UII - Understanding Invisible Illnesses

5 (Even Simpler) Steps to a Family History

2012-01-25T00:36:00.001-05:00

In September 2009, in my blog's wee, formative days, I posted what I considered to be a basic 5-step plan for learning your family's medical history. For once, I'm happy to report I think I've gotten a bit more succinct over the years, and the time has come to present to you an even simpler 5-Step Plan! Learning, examining, and sharing your family's medical history is an extremely undervalued tool. In the hands of the right doctor - or a diligent, educated patient - it can mean the difference between early intervention and late-game diagnosis.

Image found here.

What and Why?
What exactly is a family medical history? And moreover, why should I care enough to invest the time into learning mine? It's not going to change anything, afterall...

Particularly in the mysterious world of chronic illnesses, genetics seem to play a role in the likelihood of an individual turning up with one or more such illnesses. Sometimes these connections are not well understood - for example, some people link the chances of getting pregnant with twins to a family history of twins, but no one understands why or how this link may work. Other times, the links are more direct and are passed on in the same ways as hair color, height, and body shape. Either way, knowing, analyzing, and interpreting your family history can be immensely helpful in early detection of disease and illness. It will take a bit of time and (if done right) may raise some questions, but remember to look at it with rose-colored lenses: by taking the time now to find the concerns and questions, you give yourself (and others) the chance to plan for them before reaching a crisis!

Step 1: Research your family history
Develop a list of conditions that appear in your bloodline. There are a few ways to organize this information. - I think a good way is to list each condition that occured, who had it, and as many details as you can get (age at diagnosis, symptoms, progression of the illness). You are likely to find that a number of people in the family had the same or similar conditions, so keep track of each person it in whom it appeared. In particular, doctors want to know if a blood sibling, parent, or grandparent had a condition, but if you see a trend elsewhere (say, aunts and uncles), make note of that too. Remember to examine all parts of your family, both mother and father's sides and each of their siblings and parents. One way to make sure you don't miss someone is to sketch out a family tree and list information by each person's name. This will also help you remember who's a blood relative and who was related only by marriage. Additionally, some families have a person who seems to know everything about everyone. My mother is one of those people. She can tell me who had what condition, when they were diagnosed, when and how they died (if relevant), what their symptoms were...I think she even knows what color socks they wore. If you have a person like this in your family, congrats, this step will be a snap!

Step 2: Organize the information
Once you have your family's history in front of you, it can seem confusing and overwhelming. If you don't organize it properly, you won't remember the important items when you need to (such as filling out a form for a doctor). Assuming you worked from a family tree or list of family members and now have information listed next to each person, I recommend reorganizing the information by condition. Read through the list of conditions or illnesses in your family, and make a new list of each one the first time it appears. Then, go back through the raw data and record the details, especially how the person was related to you. For example:

Asthma - Dad, dad's brother Joe, grandfather (dad)
Diabetes (type 2) - mom's sister Mary, grandfather (mom), and grandfather (dad)
Breast cancer - mom's sister Ally (45), grandmother (dad) (58)

Here, I identified each person by which side they were related on (i.e., instead of 'Uncle Joe', say 'dad's brother Joe'). Doctors usually want to know information in this format. You may also want to list the age at diagnosis, which is useful in some conditions. This is also a good chance to organize conditions into groups of related illnesses. For example, put diabetes and hypothyroidism next to each other, or list all cancers next to each other. This is usually how conditions are listed on a questionaire for a doctor, and will help you remember the information AND identify patterns (see Step 3).

Or, if you think like an accountant, this is a great opportunity to exercise those Excel spreadsheet skills...just sayin'....

Step 3: Interpret the information
Once you have the data organized, you may be able to get even a little more information from it. As I said some conditions have a clear link...if you see someone in your family had colon cancer, you know you should get screenings early and often, or if a lot of people had heart disease you should be careful to keep your blood pressure in healthy limits. On the other hand, the presence of some conditions may not directly mean you are at a higher risk for them, but can show a "genetic predisposition". For example, many conditions in the autoimmune world are related. No one else in my family had Sjogren's (that we know of), but they did have other autoimmune conditions that would have indicated my increased likelihood for developing one.

Step 4: Effectively use and share your information
Now that you did all this work, at the very least you should take a copy with you to your doctor appointments. It will be invaluable when filling out those tedious new-patient forms, and may be of interest even to your current caregivers. If your family history is extensive or you have a complex health situation, consider giving a copy of your information to your doctor to keep in your record. If you have "mystery symptoms" you haven't been able to piece together, use your family history as a starting point to discuss with your doctor to reveal a new direction you should explore. Even if you are unencumbered by medical problems now, take the chance on a routine check-up to review your family history and make sure you are taking all precautions to keep yourself in good health.

Update the record whenever you find out new information. For example, if your mother develops osteoporosis, you'll want to add that to the lists. Again, Excel is a great option for this - and it makes sharing the information easy, as you can email the file to family.

A nice idea is to share the information with your family. If you uncovered any noteworthy health trends or important items, you should share that part of the information with other blood relatives. In doing so, be sure to include your own health history. And of COURSE, be sure to share the information with your own children, and encourage (maybe help) them compile a history of their other parent's side of the family!

Step 5: Your health history and family planning
Your family history is part of your own health history in a way. It helps explain why you are the way you are (health-wise) and may project what you should look out for. It is also important to keep a record of your own health history...it seems it should be easy to remember everything that's happened to you, but that can quickly become a challenge. At the least, you should have a list of all diagnoses, surgeries and the year(s) they were performed, and recurring illnesses (such as bronchitis or infections). If you saw a question about something on one doctor's forms, you're likely to see that question again so make a note of your answer.

Your family medical history may have implications as you plan a family (if applicable). I know I've asked myself and my husband if it's fair to have a child, knowing what's running around in our genetic pool. Of course, for most people the issues aren't that dramatic; you probably don't need to question having a baby altogether (and for the record, I am planning to have babies, I just thought it through). But, you may want to see if you are at risk for things like gestational diabetes or trouble conceiving. The family history will be important to an OB-gyn who will know what could be related to birth defects (for example, two antibodies I have with my conditions can increase the risk I could have a child with fetal heart block), and what steps can be taken to minimize the risk (be optimistic, many vitamins and even medications can help...for me, folic acid will help minimize this risk!). The information in your family history can also help long after the conception/pregnancy/birth stage. To use myself as an example again, I know I'm going to be really careful about my children's sun exposure (it was my trigger), and be especially attuned to any complaints they have about joints, eyes, dry mouth, or other mystery symptoms.

Have hope, you've done a good thing!
After all that work, you'll basically have a list of "WCGW" (what could go wrongs) - don't dispair! The point of this whole process is 'proactive hope'. I call myself a "pragmatic optimist"...rather than idly wish for the best, I want to do whatever I can to make the best happen! THAT'S the point of a family history. With this information at your disposal, you can take real steps toward better health and care for yourself, your family, and your children. Even if you uncover upsetting items in your family history, you've taken a step toward making something better in the future. Feel good, you've done well!

What Hypocrites

2012-01-18T09:29:00.000-05:00

This is my two cents - you don't have to agree but please be respectful: I don't know Paula Deen's medical or family history, diet, or exercise regime. If any of you are privy to that information, I'm impressed. In my opinion, the way she cooks on TV may or may NOT have anything to do with her diagnosis of Type 2 Diabetes. Furthermore, her decision to keep that diagnosis private for a while is a right we all expect and to which she is entitled. While I think it would be prudent (though not obligatory) to make more mention on her show of the fact that her recipes are treats & special-occasion meals and not representative of a healthy diet, I not only support but greatly respect her if she continues to make the same artery-clogging, diabetes-aggravating, waistline-destroying food on TV.

Image found here.

We say we are not our diseases and rightfully demand that the world look beyond these labels we must carry if we are to receive treatment and see us for the individuals we are – do we not owe Paula the same respect? The woman made a living and a reputation out of her decadent meals, but suddenly because of the label "diabetes" we chastise her for that over which we formerly drooled? Did we not already know eating the food she cooks on a regular basis would be hazardous to our health? Is it not our responsibility to make decisions about our diets for ourselves? And, if it actually were so horrific for her to cook these foods, why didn't we shun her from the start, and only now raise indignant voices after learning of her diagnosis?

I've heard the jokes for years about Paula Deen's recipes…snarky comments about owning stock in Land O'Lakes, quips about heavy chefs, and even remarks about the potential for related medical problems (aha, so we DID see that coming!). But we've always teased her because we love what she makes and wish at least one of her creations would magically transport through the TV and onto our plates. How convenient that we forget this forbidden love now.

Paula may or may not have eaten over-the-top foods on a regular basis. I don't go through her kitchen scraps; I don't know. She may have a family history like mine, with several diabetics – some of each Type 1 and Type 2. She may have cooked extravagantly on TV then gone home and eaten a raw veggie platter…or half a cake, I have no idea. But even if she did eat these foods, and more frequently than is wise, that doesn't completely mean she "brought this all on herself" and that she is any less deserving of our compassion. No one knows why some people eat a certain way and have no effects while others develop life-threatening conditions. I'm sure we all personally know of at least one person who was seemingly in perfect health only to develop something horrific, as well as someone who lives life daring disease to take them but hasn't had so much as a sniffle in years. Why do some people smoke 3 packs of cigarettes a day and live to be 90 with nothing worse than a smelly car, but someone who lived in their house is undergoing chemo for lung cancer from second-hand smoke? I would hope Paula knew a judicial diet would be healthful and that she tried to keep one, but whether she did or didn't I don't think it's my place to assume or judge.

Paula, you've always presented yourself as a strong-willed, self-reliant, independent thinker. This isn't the first time you've been criticized for your food, probably by people whose opinions mean a whole lot more to you than we random TV-watchers and web-surfers. I strongly suspect you don't need to hear this at all, but I'll say it anyway for those who need to hear it: keep on keepin' on. You love what you do, and I love you for that. If you choose to create new paths based on your relationship with diabetes, incorporate this "news" into what you've been doing, or separate it entirely from what you do on TV, I support you. You have the chance to exercise the right we all fight for – to be and do exactly what you want based on your qualifications and not your diagnosis. Live it up!

Jenny's 2012 UII & Me Resolutions

2012-01-03T01:02:00.000-05:00

Image found here, and it reminds me a lot of my favorite fellow Sjoggie blogger and her motley muttly crew...;)

This worked out quite well last year (which was the first time I ever seriously contemplated resolutions) so I'll give it another go. My resolutions - personal, professional, and otherwise - are rooted in things that have challenged me in the past year. This way, my focus is really on overcoming challenges, and that's what it should be about! And so, I humbly present...

Jenny's 2012 UII & Me Resolutions

1. Maintain blogging frequency.

Last year, I resolved to post more, at least 2-3 times per month. In the end, I had exceeded my goal, posting over 50 posts for an average rate of nearly 5 posts per month! For me, this is a big accomplishment because of other constraints on my time. For as much of a talker as I am, I don't take posting lightly and want each one to be a quality message with usable or at least interesting information which takes me some time to put together. I was very proud of my rate last year but that's not to say it wasn't challenging, so I believe it belongs on my list again. So, for 2012 I resolve to post 4-5 times per month on average, but not less than 3 times in any given month (such as especially busy months).

2. See certain projects through with AIM.

KPMG's AIM - Abilities in Motion network (formerly the Disability Network) has grown nationally and locally in Philadelphia in 2011. I have been both proud and honored to have a front row seat. But now we start transitioning into the next critical stage of maintaining momentum and continuing growth. To this end, I have some specific goals for our local chapter. The first will be the fruition of a new network idea for a caregiver's night out (most likely a bowling event) to get everyone out, networking, and relaxed without self-identifying. Second will be making sure solid gains to date (i.e., the Disability Mentoring Day) aren't blips on the radar. We received both immense praise and realistic suggestions for improving the first DMD, and we MUST follow through in making this a tradition. Third, I would like to see a measurable increase in participation - my target will be to double present numbers. Now, to be clear (because it can be very hard to measure this), I will count "participants" as people who participate in a special office event (such as the mentoring day, a learning project, etc) and/or who actively communicate with us throughout the year (such as replying to emails, giving ideas, etc even if they can't participate).

3. Grow UII's forces.

Over the past year, we had two or three people become more heavily involved with UII...not just turning to us, but working with us (such as presenting). Through this growth, as well as our expanding foray into IRL events and programs, it is obvious to me UII are ready for more people to use their voices. I hope to welcome a few more people into the UII family of representatives as speakers, maybe writers to help drum up publicity/media interest, etc. I know deep in my gut that this will be the key to making alliances with people and organizations who will help UII rise to the next level of creating awareness & providing support.

4. Take UII where it belongs.

UII is ready to be a 501(c)(3) organization (the IRS tax code regulation for a non-profit able to collect tax-deductible donations). I figured this out last year, and had a secret personal goal to make it happen but wasn't able to pull it together. Perhaps that's because I kept the goal secret. I was afraid if I announced it and didn't make it work, I'd be embarrassed and possibly lose support. However that probably backfired, so this time I'm saying it loud and proud: in 2012 I will try to get UII registered as a 501(c)(3) organization. I pray I don't embarrass myself.

5. Knock out the CPA exam.

I've passed one of the four parts of the CPA exam. Now, I'm in an 18 month window to complete the rest before losing & having to retake the first part. It's ambitious, especially since I'm not in a position to take a sabbatical or other extended absence to focus on studying - but that's not likely to work for me anyway. My preference will be to pass the other three parts this summer (according to a schedule to be finalized with some advice from my mentors), but in the interest of being realistic if I pass two more I'd have to say I wasn't a failure. If I don't get it done this year, I have only a few months early in 2013 to finish it within that window, and that'll be hell so let's pull for this summer. Prayers requested, appreciated, and very much needed, both for me to pass and my husband to survive me studying!

6. Reassert my control of my health.

I didn't do the best job last year on my health-related resolution "not to lose my health in my activism". As I discussed in my last post, I didn't fail really because I didn't have some dramatic relapse, but I certainly didn't make headway. So, this year I'll try the approach I used above again and get more specific. In 2012, I will work toward some specific health goals including: losing some - any - weight (I won't define a number, that will only set me up for failure) and keep it off. This is obviously something I would love for body image purposes, but has a serious health implication that is a more powerful driver anyway. My joints & tendons would do much better with less weight, and tendinitis has been a big problem for me this year. Also, I'm inching ever closer to starting a family (not too close, but it's going to take a long time to get my body set) and I want to be in the best shape I can to give us the best prospects! Besides weight, I want to find out what's causing my latest hair loss problems (an issue that has come and gone over the years for several reasons, but this latest bout has been on the worse side again) and tackle it. Lastly, I want to improve my stamina. I'm not so much talking about for exercise specifically, but for getting through the day. I feel fatigued after cooking, after sorting, heck even after planning these days. It may be a rough patch I'm going through at the moment, but I want to nip this bud before it takes root, and try to make my body more resistant to it.

7. Go on vacation and feel good at the end.

Shawn and I got an awesome deal for this really cool destination I've wanted to go to for a few years - the Southern Cross Ranch in Georgia. We were able to purchase a voucher at a discount, which we can use throughout 2012. Obviously there are several factors that will affect when exactly we go, but I want to plan & execute it in a way that leaves me feeling invigorated and satisfied at the end, not rushed, let down, or short changed. This means everything from allowing enough time at the front and back ends of the trip (for packing, unpacking, recovering, etc) to making use of the things that come with our package (all inclusive meals and horseback riding time). Silly as this sounds, to make this goal a reality will require me to make a plan and feel good when I stick to it. I'm a planner, but then often either stray from my plan or wish I had. It's hard for me to say "I did what I set out to do and it was great", but I'll do it this time!

8. Fix my relationship with my church.

We've had a little rough patch, my church & me. I had to terminate the youth ministry program I ran; due to shortages in certain roles I haven't gotten to lector in a while as I've needed to fill in more often to do Holy Communion (I love lectoring); and on the whole I've lost a lot of specific connections to the real life of the parish. It's the sort of thing that happens as we go through phases in our lives - I've needed to dedicate extra time to some things at KPMG and with UII and those are good reasons for re-prioritizing. But I love my parish, and value being a real member participating in life there. In 2012, I will somehow find a way to re-anchor myself a little more into this community, and also work on rediscovering some spiritual aspects that have slipped as well.

So, ladies and gents, I have again committed my goals to writing. Goals based on struggles I've had in the past year, with specific parameters when possible and generally measurable goals. Once again, I'm a little scared I'll fall dramatically short when we look back after a trip around the sun. But I'll be brave if you are!

Are you the goal-setting type? Do you find it helpful to make stated resolutions/goals, or do you do better with general concepts? Is there something you've tried that just does not work? Did you write up a post on this topic yourself? Share with me & UII! Bonne annee et bon sante, mes amis!

How Did UII Do?

2011-12-29T01:26:00.001-05:00

Image found here.

Last year, I actually made some New Year's resolutions. I don't usually get into that, but I had read a special post by a fellow blogger that inspired me to do some introspective reflections and use my challenges to create goals. Goshagolly, she was SO right!

I was scared to reread my post "Jenny's 2011 UII & Me Resolutions". Maybe I had met one target, but really, how likely was I to have actually accomplished anything? Goodness knows I didn't reference the list much over the course of the year, and a quick retrospective over the last 12 months didn't seem to yield a lot I thought would hit. I'm so glad I looked anyway.

Here are the resolutions I set for UII, and me, for 2011 and how my 'actuals' compared to my goals:

1. Strike a balance between learning from other activists and comparing to them.

I had declared "this year, I will use others as a source of inspiration" but not as a "benchmark". Actual results...I think I may have actually done well with this! Naturally, we compare ourselves to others all the time, but I really feel better that I'm making these comparisons about growth and not races. I don't feel the urge to minimize my own work so often, while being able to happily praise the work and successes of others. Arthritis Ashley has had multiple achievements lately including being named one of "40 under 40" in Pittsburgh; and RA Warrior Kelly has created the only foundation dedicated solely to rheumatoid arthritis (the Rheumatoid Patient Foundation - Rheum4Us). I didn't even get UII not-for-profit standing yet. But it's ok - I did plenty of what I would call 'strong activism' and did it while being promoted at work, handling my first big projects in this role, and trying to support my husband in his first super-intense semester at Villanova. What I've done may not be as momentous as what these other women have done, but I'm still proud of me:) (This is pretty significant - I'm not known for being secure enough to be satisfied with my own approval.)

2. Blog more often.

My resolutions post was #50 (that's 50 between September 2009 and December 2010 - 16 months), and I had a goal to blog an average of 2-3 times per month in 2011 (or 24-36 posts over the year). As you know, I recently passed the 100-post mark, meaning I've put up more than 50 posts in 12 months! A+ for me!

3. Feel good when I achieve goals.

Historically, I often set reasonable goals but when I achieved them, discounted them as not having been valuable enough. I wanted to work on changing this behavior pattern, and start valuing myself for all my contributions & achievements. Again, I have to say I believe I did it (lol, even this sentence proves it)! I refer to number 1 and 2, above...I am proud of what I've done this year, and I'm happy with being proud of myself. Similarly, I met a goal - and not an overly ambitious one by some standards - with the frequency of my blogging, and I'm giving myself the gold star for doing it, without any clauses! In fact, I think I did so well I'll be happy if I repeat it next year! Of course, in all honesty I do still seek plenty of external approval, but without it I'm still happy.

4. Make at least one or two concrete gains with the DN.

The DN (Disability Network) is now AIM (Abilities in Motion) - the diversity network at KPMG for partners & employees with a disability AND those caring for someone with a special need (parent, child, spouse, etc). I tried to do a lot when I got involved in 2010, and wanted to realize gaining some solid ground in 2011. Again... mission accomplished! We've had HUGE strides! Nationally, there were many achievements I had no role in, but I did get to attend the Disability Matters Conference (where KPMG was named an Employer of Choice) and was key in a national online training about the meaning, purpose, and tools available to us to be "ePatients". Our growth locally was even more exciting - we brought a new, extremely dedicated partner champion on board, got a network budget approved (for the first time in our office), sponsored the the Sjogren's Walkabout, and were one of a handful of offices nation-wide to host the first Disability Mentoring Day! These changes were all special projects of mine, made possible by some truly special, supportive, and caring people in the firm. And now, we have a wealth of new contacts in our office who want to be involved, and therefore ample hope for the development of programming around their passions as well!

5. Continue to grow UII's connection with VU.

My goal was to "identify...3 main projects which can keep me connected to VU". While not a 100% success, I substantially achieved this goal. First, we had the HUGELY successful nursing student event with "Invisible Illnesses Made Visible" campaign in February. Second, Stacy Andes (Director of Health Promotion at Villanova) joined us as our moderator when UII presented a patient panel at the recent Social Media in Pharma conference in NYC. The third is a little more of a reach...we've definitely kept communications open about doing future projects, though none have firmed up at this time. However, now that Shawn's in the nursing program and SNAP (student nurses association of PA), I have some firmer ideas around how we can ask SNAP to get involved with the Sjogren's Walkabout in May - at least, in some awareness efforts in the months leading up to the walk. So not an A+, but I'd say about a B+ on this one:)

6. Not lose my health in my activism.

Didn't quite hit this one out of the park either. Actual results were closer to a sac fly - made some big noise, got some attention for a moment, but ultimately in trying to help the runner advance I put myself on the sidelines for a while. I certainly didn't make any great improvement in my health, or even my self-care. I did, however, get off Prednisone and start allowing myself more rest when the opportunities arose. In my new role at work (senior associate - now I tell people their schedule instead of waiting to be told my own to an extent), I've dramatically cut down on how late I stay at work and the number of weekends. This, incidentally, is probably also a function of my managers, partner, and nature of my clients, but my own choices now play in as well. I didn't make headway but don't think I lost much ground either. I've probably earned about a C here.

7. Continue to listen for God working through me and play second fiddle to the Holy Spirit.

"This year, I will...make sure I let my thoughts, words, hands, and actions be guided by the Holy Spirit." My year started off well enough, continuing a conversation I had with a WEGO friend about faith, but it wasn't a particularly good year for me and my relationship with the church. I tried a few times to participate in some outreach efforts with my parish, and as much teen ministry programming as I could handle. But over the months, I had to make the extremely painful decision to officially end the ATM (Annunciation Teen Ministry) program and wasn't the most effective at the parish visits. For reasons I can explain another day, I had to make these decisions. Currently, I'm at another 'lull' in my activity at church - I'm still a lector though with the recent influx I'm rarely on the schedule, and still an extraordinary minister of Holy Communion (and love it). We still have our teen masses, though they now run without much involvement on my part (a good thing for those stepping up). But, similar to my thoughts above (number 3) about being content with myself, I'm not freaking out about this. My roles at work and as a health activist are particularly energy consuming right now, and I think that's where God wants me to focus for a while. I also still have an ear open around church for what my next role or project might be - it just may not be immediately around the corner. And that's ok, sometimes it's nice to assume my role as a regularly part of the congregation and enjoy my faith and all it's mysteries & glory from this view for now.

So what have I learned? I've learned that by reflecting on my current challenges and recent experiences, I can draw on disappointments and frustration to develop fruitful goals. I've learned that the acts of thinking my goals all the way through and committing them to paper (or the web) can help ingratiate them into my thought process, making them far more attainable. That a few of the 'smaller' goals and achievements can directly drive larger scale successes all on their own. And that some of my biggest challenges still include balance - balancing my health and activism, work and medical needs, and personal versus external expectations. I just might have to write a new list for 2012...what do you think?

How did you do? Did you set formal goals? What about general or informal plans? What were your achievements - planned or unplanned? Who do you want to be and what do you want to do? I just love sharing:)!

Bang!

2011-12-27T00:14:00.000-05:00

I'm a reruns girl. Give me some good 80's and 90's sitcoms - Roseanne, The Nanny, Golden Girls, or the holy grail...The Cosby Show - and I'm in heaven. But I recently fell in love with a current show - the Big Bang Theory.

Boy howdy, is it a HOOT! I used to believe that Frasier was the smartest show on television, but The Big Bang Theory takes it to a new level. They are geniuses, masters of all kinds of technical, practical, and theoretical knowledge, but living out their dorkdom instead of smothering it in fine wines.

Though I'll take a glass to try...who am I to turn up my nose at two psychiatrists, after all.
But anyhoo.

The Big Bang Theory gives me plenty of laughs, and lots of opportunities to feel clever by proxy when I get a joke. But it's also intimidating. The main characters are supposed to be my age-ish (later middle 20s) - 3 have doctorates and one "only" a masters (he's "just an engineer", lol). I have a bachelors; one that it took me an extra year to earn due to undercontrolled AIs. Not only do these guys have several advanced degrees, but they embark on crazy capers with seemingly no physical limitations (except for Leonard's noteworthy lactose intolerance). The only masters program I'd even consider is a particularly laid back one where I'd take 1-2 classes at a time, max, and I have no interest in anything more rigorous. I love to learn but getting my tuchas to and from work each day is demanding enough.

Also, I realize I'm in the majority of non-doctoral degree holders, and that the other main character (Penny) attended community college. But Penny shows me up too, with her beautifulness, blondness (and not even dumb blond), and energy to run around dating, working, acting, etc. While waiting for her big theatrical break, she works at the local Cheesecake Factory - a ridiculous sounding envy of mine is people who can hold waitressing jobs. I could never be on my feet all day and hold the trays laden with plates, let alone remember orders with brain fog. I've never sought a waitressing job and some people think it's because I'm snooty, but really it's because I wouldn't last one day. Not that I want to wait tables, not that I'm ungrateful for a chance to get the education, skills, and connections I needed to land the job I have, but if it came down to doing whatever needed to put food on my family's table someday it's not likely I could do it.

But, for all my over analyzing, I do try to sit back and just enjoy the fiascoes brought to me by TBS. Any show on TV is going to have people with more energy, attractiveness, and accomplishments than me...and it should! Heck, even I wouldn't watch a show with someone like me - my goal is to escape reality, not wallow in it! TV is there to distract, inspire, engage, even occasionally aggravate, not to provide a comparison for my life.

And then I had a realization. I'm also a bit obsessed with the show's theme song - it's quite clever, and I was able to memorize it without looking up the words...except one. There was one word I couldn't make out no matter how many times I caught the intro. The song summarizes evolution starting with the Big Bang (duh), and the first lines are "Our whole universe was in a hot dense state, when nearly 14 billion years ago expansion started ___," after which it launches into a rapid recap of autotrophs, neanderthals, and modern sciences. I COULD NOT GET THAT WORD! So finally today Shawn looked it up for me and man, was I surprised. Wait. The word was "wait"!

Of course! In even in the most literal reading of the Bible the world wasn't created in a day, and every secular theory takes even longer (for the record, I think the Bible IS telling the story of a "scientific" process but this isn't the time or place for that discussion). We have to wait. Whether you believe in the Judeochristian or Muslim God, another deity, the spirits of nature, or unguided celestial accidents, you have to wait. For a very long time.

Waiting. Ah yes, my old nemesis, Patience. "Pat" and I don't get along well - never did, never will. It was bad enough when I was young, but once the S-word (Sjogren's) came knocking at my door in high school, I developed a need to everything now before it's too late and that really meant Pat was tossed aside. But as you and I know, I must learn to have a love/hate relationship with Pat. Sitting in doctor's offices, anticipating the next new treatment, even holding out for a diagnosis to begin with...waiting for pain meds to work, for insurance to approve it, or for a friend to "get it"...waiting to get closer to an event to see if I feel like I can handle it; waiting is part of my life. We have little choice but patience.

Of course, patience doesn't mean passivity. Patience doesn't mean hoping and dreaming and pining only. Patience can partner with action, with the power of words, or with creativity. We can always DO something now, we just still have to WAIT for it to take effect. And since we will have to wait, the sooner we 'do', the better. And, there's the indulgent side to "waiting". The type of waiting that involves slowing down, smelling the tulips (roses upset my allergies), trying to care for our own needs, and pacing ourselves. Not cleaning the entire house in one day but instead splitting it up into chunks. Taking that bubble bath because we need to soak our muscles & joints. Getting in a nap because we need it medically. These kinds of waiting are also hard, especially when they mean we have less free time than our pals or take longer to see results when we work on something, but we can also get some good from them.

I guess if Sheldon and the rest (Sheldon's my favorite - he plays the Theremin!) can "wait" for the big bang to create life, I can wait too. I can form a treaty with "Pat" and try to let him do his thing while I do mine - activism. Now when I hear the theme song come on, I get excited for the beyond-witty antics about to come my way...but also hear a little reminder in every day life to remember to wait, slow down, even (dare I say it) relax. I like to think this show not only entertains me but calls me to be better to myself and more patient with others. A very wise show, indeed.

Image of Sheldon and his theremin (I highly suggest YouTubbing this scene) found here.

HAA!

2011-12-11T14:05:00.001-05:00

No, I'm not laughing:) Well ok, I'm smirking that you probably laughed, but that's not what "HAA" stands for - it stands for the Health Activist Awards!

WEGO Health is at it again, shaking up the norm and giving activists new ways to build connections, credentials, and influence. For the first time EVER, they are handing out Health Activist Awards!

Image, and award info, found here.

You can read about the awards, rules, criteria, and the rest of the process at http://info.wegohealth.com/awards-2011/, but here's a summary for you: WEGO has determined 10 categories of activists for which they will present awards. Activists are nominated during the month of December by, well, anyone, and winners will be selected by a panel of judges - who are fellow activists! (So no, you cannot "vote", but you can nominate anyone you want for any award...and, well, I haven't been nominated yet:( ). There are awards for everyone from "Rookie of the Year", someone who just came on the scene in 2011 (so not me lol), to "Best Kept Secret". Some awards recognize different types of activists - like the "Paperboy Award" - or activism styles - like the "Hilarious Health Activist". There is one award that I found particularly interesting (though it's hard to pick, they would all be such and honor and honestly I don't know how my communities feel I add value):

Described as: "This health activist did amazing things offline this year"!

I find it acutely uncomfortable to ask for accolades, but I guess there are times I have to give myself a nudge - so my request to you is to take a look at the award categories WEGO has designated and consider if you think I might deserve a nomination for anything. As I said, the offline one caught my eye, so I guess I'll explain why. BUT, first I want make sure you understand, I'm only asking you to look at the awards, and act ONLY IF you really think I might have earned something. Nominations can be made anonymously so I'll never know if you don't nominate me...because I might not know who did if they chose to do so anonymously (if I get nominated at all). Did I ramble awkwardly long enough yet? Yes? Ok fine, I'll move onto why I think the offline category is so interesting.

My last post, We are UII - in NYC, was about the latest UII event this past week. As you know, this wasn't my first panel. It actually wasn't even the first panel Jon, Bridget, and I have done together (that would have been the presentation at Villanova back in February). But it was the first panel presented entirely by UII! In the past, I've been a panelist at events like this one as part of a group presented by WEGO Health...in fact, that's how I made the connections that led to this opportunity (add that to the list of instances of WEGO awesomeness). At Villanova, an existing organization hosted us - usually SNAP, the Student Nurses Association of Pennsylvania. UII also sends teams to events, such as the Sjogren's Syndrome Walkabout (which, in Philly, will be on May 5, 2012 - SAVE THE DATE NOW!!). But December 7, 2011 marks the first time UII presented a panel or speaker entirely under our own name!

The UII portfolio of programming is steadily growing. With each event, we reach more and more people, as well as companies, industries, and institutions. A sample of what we've done so far includes (not a complete list):

Events at Villanova including - campus-wide symposium, nursing program panel, and intimate learning community sessions
WEGO Health events - panelist for industry presentations, webinar speaker, focus group participant, and so much more
Condition-specific events - Sjogren's Syndrome Walkabouts (multiple years - walkers & committee), Sips for Sjogren's (innaugural year - donor and committee), Light the Night walks (mulitple years - walkers)
Workplace efforts - KPMG's AIM (Abilities in Motion) network leader, locally and nationally (includes organizing programs such as national online session on ePatients and local office's first Disability Mentoring Day in 2011)
Unique events - such as being part of the coalition which developed and promotes the Digital Patient Bill of Rights, and being a guest speaker on Optimal Health Seekers' Radio (hosted by fellow activist Trish Robichaud)

Oh yes, and now also...

Sponsoring presentations for the betterment of all chronic patients!

With the aid of the internet, UII has made connections with at least tens of thousands of people around the world (at last count, I can confirm hits on this blog alone from 68 countries). It would be impossible determine the full number - especially considering I've been translated into French at least once, reaching an audiene I otherwise might not (thanks, Jazzcat;). UII has also made connections with thousands of people even more directly; with KPMG, UII gets to impact not only our 23,000 employees in the US, but also other companies such as the other honorees at the 2011 Disability Matters Conference (and by the way, there is also a Europe conference). With Villanova, UII has connected with thousands of students, including those in nursing - our future caregivers. UII can only do this with the cooperation of many organizations, and especially the help of several brave men and women "on the ground" with me (like my fellow panelists).

How much impact does this really have? KPMG's ePatient session, which was one of my projects, had more participants who were not members of the AIM network than any similar event to date; I have the ear and support of the Philadelphia office managing partner, who is a influencer at a national level; and one that may not sound so impressive but represents a huge personal bond, my performance manager, a partner at KPMG, traveled from Philadelphia to NYC during one of our busiest times of year to see our panel last week (she commented she learned a lot and had ideas she wanted to discuss with our office leadership). My friends, and their friends, contact me to ask if they can refer someone they know to me to be connected with resources for special challenges they are facing. UII is earning its reputation as a place to be supported and connected - and as more people come to this place, we have more to offer each other. The larger our portfolio grows, the more UII is capable of doing!

As you can see, it's very hard to separate online from offline activism. To me, activism is activism is activism - the goal is to reach a lot of people in a many ways, and sometimes in person has more impact than online (though not always). But I can tell you I work very, very hard on all these projects, especially the IRL (in real life) ones. To be successful to me, someone must have learned something knew, someone must have an idea they didn't think of before, and someone must be motivated to do or learn or share something more. And I feel all UII events, so far, have been successful:)

We are UII - in NYC

2011-12-10T14:45:00.000-05:00

UII Panel - Stacy Andes, myself, Jon Dorfman, and Bridget Meakim

Need to make t-shirts: We are UII!

On Wednesday, four activists who are definitely NOT morning people put aside their nocturnal ways and set out before daybreak to bring the patient perspective to the Social Media for Pharma conference in New York City. Braving cold & rain, and armed with a useless GPS, slide deck print-outs, and more caffeine than should be allowed in one vehicle, the quartet made their way northward from Philadelphia for their "Broadway debut" (the conference center was on Broadway:)).

During their 45 minute presentation titled "Building a Relationship for a Lifetime: Using Social Media to Target & Market To Audiences with Chronic Health Conditions", the group covered topics including: why chronic patients (and in particular, young adults with chronic health concerns) are a crucial demographic; the experiences influencing patient decisions; the concerns patients have about their futures as they balance wants & needs; the Digital Patient Bill of Rights; and action items for pharma such as ways to use social media to improve patient relationships and advice on the proper tone to use in their communications.

As always, the audience was keenly interested in the unique opportunity the panel posed - the chance to ask patients what they really think, want, and need. During lunch, which was shortly after the panel's timeslot, the program organizers arranged a special time for interested attendees to dine with the panel and continue the discussions. By the time the checks were paid, our weather-weary but always-elegant team began their journey home with new contacts, ideas formed in conjunction with big pharma on how to move some plans forward, and a sedan full of satisfaction!

Forgiving Myself

2011-11-28T00:29:00.000-05:00

Today was the first day of Advent. While Lent (the period leading up to Easter) is more directly focused on repentance than the 4 weeks of Advent leading up to Christ's birth, there is still an undertone of seeking forgiveness during this time. Maybe it's something about the image of the new, little baby Jesus - not only innocent by divine birth, but also by virtue of being a brand new babe, who hasn't yet had time to falter, hurt someone, harbor his own hurt, or do any of the other things we do in our lives.

And for my many readers who have different religious views (or views on religion), this post isn't about Christmas or even Christ, per say. Advent just happens to be a good way of explaining a thought I had today.

In this time of seeking forgiveness from God - and with an even bigger focus on forgiveness between ourselves than seen in Lent - I realized there is one more person from whom I must seek, and to whom I must give, forgiveness: myself.

See image, and related article by Timothy A. Pychyl, Ph.D., here.

Like most Americans, I enjoyed a 4 day weekend from Thanksgiving on 11/24 through today (11/27). Also like many Americans, I had a list as long as my medical Explanation of Benefits (EOB) forms of what I wanted to get done. I needed to gut my room, find a lot of "missing" clothes buried in there, clean the carpet well, pack up out of season clothes and those to be donated, and figure out how to store the clothes I have. I also needed to clean the living room, write some blog posts to have on hand over this next terribly busy month, work on some items for the AIM network at my firm, get a jumpstart on work for my current client, and due to some technical problems earlier in the week, try to nail down work for another project. I also wanted to get some holiday shopping done, revise Shawn's budget with him, and go over our benefit options for my open enrollment period.

As I write this on Sunday evening at 11:30pm my time, I've gotten through perhaps 1/4 of my bedroom. I sorted a tuchas-load of clothes, put most of the folded clothes that are mine away, organized and stacked Shawn's so at least they're off the floor, got the air conditioner out of the window, vacuumed the part of the floor I revealed, threw out trash, gathered some clothes to donate, and organized 3 suitcases I use to store sweaters & shoes. It was solid work, and I felt good with what I got done. But in the same breath from which I heave a satisfied sigh, I feel the nag of the rest of the to-do list that didn't get-done. I couldn't go over anything with Shawn as he worked some crazy shifts and was swamped with schoolwork, and I did get some holiday shopping done (I'll have to tell you my First Black Friday adventure another time), but that still left the vast majority of the work.

A very big factor in my low-productivity, actually, was my exhaustion. As you may have noticed, I pound away at life pretty hard most of the time. I've put in late nights at the office, worked on the upcoming UII panel presentation and related materials, and done a million other things lately (which is why my to-do list was so atrocious in the first place). Also, I recently switched from Provigil to Nuvigil (both "stay awake" meds) due to insurance costs, and found Nuvigil works but wears off far more quickly. It is, as usual, a double-edged sword. Sometimes Provigil would keep me going too long, which prevented me from getting enough rest many nights, but it would also usually stay in effect a day or two after I took it which let me skip doses on weekends when I could nap if I wanted but still be mostly functioning. Nuvigil lets me fall asleep more easily on days I take it, but it also means I experience more significant fatigue on days I skip it - hence my multi-hour naps on Friday and Saturday. When I let my body get the rest I know it needs, I lose a HUGE amount of time. I know this is something you all relate to incredibly well. And, even after waking from those naps, I was usually pretty brain fogged the rest of the night.

I'm upset about what I didn't get done. I'm stressed about the things on my plate now for the next few days at work; I'm frustrated that for what I got done in my room it's still a pit with heaps of clothes and boxes and bins; I'm worried about the information I never got to review with Shawn.

I didn't have the best work ethic when I was younger. It was sometime during college when I broke through my procrastinator ways, and figured out that by getting it done now I wouldn't have to worry about how to do it later. Because it was a self-taught and honed trait, I'm secretly rather proud of my work ethic such as it is now...except this weekend sucked that out of me. Suddenly here I am in the all-too-familiar place at the top of the "supposed-to-do" list.

This is not the work ethic I make myself live up to. But, I think I need to forgive myself.
I obviously needed the rest. I wasn't running around playing the social butterfly - yes, I saw a couple people but that accounted for less than 4 hours total across 2 days. I wasn't being frivolous with my energy, I just simply didn't have enough to go around. And, this should have been a weekend where it was ok to be in that situation, when no one was demanding much of me. With one notable exception I don't care to dwell on and get myself worked up over, this was a time people around me were saying "stop. Recharge. Take some time". That's next to impossible for me. My instinct is to cram as much into my time as I can. When I plan time off, I always budget my days by what type of tasks I want to accomplish (cleaning, writing, etc); it's just how I operate. Or rather, it's how my brain operates. Unfortunately, my body has other plans from time to time, and this weekend was apparently "time".

My body said "heck no, don't even TRY it Miss; you WILL regret it", and suddenly I was sidelined for the first 3 quarters (wow holy Gadzooks - not only did I use a football reference but it was a pun, too). I'm angry with myself for not pushing through more work.

But I know that's not right. It's easy enough to ask myself for forgiveness, but I don't know how to grant it to myself. Somehow, I have to find away. When all's said and done, I have to forgive myself for not living up to my plan. This is especially true when in hindsight I realize it was an unrealistic plan from the start. Gosh, I hope I'm a lot better at forgiving others than I am with myself.

With chronic illnesses (and pain and fatigue) comes plenty of chronic guilt. We may voice the legitimacy of our limits for the rest of the world...but inside our own heads we hear so much doubt. Do I really need a 4 hour nap? Can't I stay up late and get this task done? Why should I get to claim "brain fog" when other people wouldn't need to stop? (And yes, "brain fog" sounds pretty silly to us, too, even though we live the debilitating effects.)

Yes, we do. Yes, we need to nap - our bodies are fighting 24-7 battles against themselves. No, we can't stay up late - what little functionality we have is strongly correlated to our ability to adhere to a schedule. We 'get to claim brain fog' - our work is no good when it comes from a low-hanging cloud. We need to forgive ourselves.

We need to BELIEVE it's ok to live within these limits. We need to allow ourselves compromises with ourselves. We need to accept we aren't going to be able to build the tower of Babel on a 4 day weekend just because "it has to get done somehow", and love ourselves anyway. We need to ask ourselves for forgiveness and give it wholeheartedly and without delay.

Now if only there was a 'common sense' pill to help us forgive.

(PS - I found a great article on this subject by Timothy A. Pychyl, Ph.D., entitled "Forgive Yourself to Stop Procrastinating". Take a look at why some psychologists believe this is a key to future productivity and progress!)

Holiday Travel Tips

2011-11-23T23:12:00.000-05:00

In the United States, today was the day before Thanksgiving. For us, today kicked off in earnest the holiday season...which also meant kicking off the traveling season. In fact, for the first time since the US recession began, reports indicate we're seeing an increase of as much as 4% nationally in travel for Thanksgiving. Many of you have already put in hours on the highway, or may even be reading this on your smartphone as you sail down the byways (or sit bumper-to-bumper...).

See the original cartoon at The Week and more from cartoonist Drew Sheneman here.

Yesterday, my favorite blogger and fellow Sjoggie, Julia, posted about suggestions the Sjogren's Syndrome Foundation makes for surviving air travel. You can see her post at Sjogren's Syndrome Foundation: Tips for Airline Travelers with Sjogren's. And yes, a lot of these tips are applicable for travelers without Sjogren's so you might want to take a read through.

So, in honor of this national time of travel tips and woes which gives rise to some of the best "Worst Trip Ever" stories, I thought I should discuss the lessons I've learned from one of the most famous travelers & explorers in the world - Indiana Jones.

Photo found here.

And so, for your Thanksgiving enjoyment, I give you my list of...

The 10 Most Valuable Things I’ve Learned from Indiana Jones

1. If you can’t see what’s ahead, throw sand.

2. If you don’t know how to get from where you are to where you’re going, just use a rubber raft.

3. Stay in the shadows but look for the light.

4. Sometimes air is not your friend.

5. Fear live people, not dead ones.

6. Listen to the crazies.

7. Every crisis is a learning opportunity.

8. Everyone should know how to use a whip.

9. Don’t be a child, find something to fight with.

10. The right hat will work in any occasion.

Happy Gobbles, my fellow turkeys!

Living Happily Ever After: Building a Brighter Future

2011-11-18T02:11:00.003-05:00

As you know, October was National Disability Employment Awareness Month (NDEAM). In celebration, I wrote two posts - Once Upon a Time: A Tale of Disclosure and After the Honeymoon: Chronic Illness in the Workplace - which are about deciding to diclose my disability and my first months in the workforce. We've looked at the past...so now let's look to the future ahead, and what we can do to get there from where we are right now!

The event I'm writing about took place on October 19. Yes, that was last month. And yes, NDEAM itself was also last month. This I know. But what's more fitting than carrying the conversation on into the rest of the year? (My schedule these days might have just a little something to do with the timing, too...just a titch.....)

Image found here. Sadly, I didn't get a photo from our actual event.

On a rainy Wednesday in October, half a dozen KPMG professionals gathered in our favorite conference area to participate in our first Disability Mentoring Day, which was part of the firm-wide celebration of National Disability Employment Awareness Month (NDEAM). There, they were paired with mentees who are customers of the PA Office of Vocational Rehabilitation (OVR) in our local region (OVR is a government agency which works with people fitting the broad definition of having a disability to develop the skills they'll need to compete and succeed in the workplace). The mentees spanned diverse backgrounds from recent college graduates in their 20s to experienced men and women looking to apply skills developed over time in new markets. Each came to the event with different goals for the day, yet all said their expectations were exceeded by their assigned mentors.

The Philadelphia office managing partner (the head honcho in the local office) gave the welcome address, explaining that the Mentoring Day was the next step in our office’s journey toward diversity and inclusion. The group, which also included OVR representatives and other KPMG volunteers, learned about the history of the AIM (Abilities In Motion) network, firm programs such as schedule flexibility, and the uniform accomdoations process introduced earlier this year. KPMG mentors spent the next few hours working one-on-one with their mentees. Throughout the day, the pairs discussed many aspects of professional and operational matters based on the unique interests of each mentee.

While the event was designed with the needs of the mentees in mind, KPMG participants gained much as well. One friend of mind, a first year audit manager, used his role as mentor to develop his own leadership skills, noting that “meeting an individual with a disability [helped him] to realize that they really aren’t that different from you or me”. He found that managing a team including people like his mentee requires the same types of creative problem solving as any other, such as involving those you manage in identifying solutions and being sensitive to individual needs. His mentee described how my friend used real-world examples to help his mentee better understand the analytical perspective our professionals exercise. Our manager was successful in his role because he understood his mentee is a person first, with a disability that does not diminish his ability to do the job.

The mentoring day held special meaning for me personally. To begin with, I was given free rein to take this idea and run as far as I could. The proposal to participate came down to us from national, along with a rough draft of an agenda and local contact information. The rest of the logistics & event design were up to me. And to be honest, I'm pretty derned proud of myself. I was able to pull together all the information OVR needed, anticipate and address various challenges (such as balancing the goal of providing mentees with a realistic glimpse into our world while maintaining confidentiality of client & firm data), and react to last-minute changes (including fluctuating numbers of each mentors and mentees) to put forth a solid event. When the program was over, I realized I felt like I had been at a firm event - nay, a GOOD firm event (we had food :D) - and not some amateur attempt. Anyone attending would see it as a polished product from a major company, not a wing-and-a-prayer presentation by a fledgling staff flunky. I think the idea here is that I felt accomplished.

I don't usually go off on quite such a tangent about the success of my ventures (partly because they don't always result in such success!), but this event was more than just a "good show" for me. This event, in a mere 5 hours, impacted at least a couple dozen people in different ways. Our 6 mentees and 2 OVR guests saw what I've been saying for 2 years - KPMG is a company that walks the walk that matches their talk when it comes to inclusivity and support for employees with disabilities. They're not perfect, but are doing well and moving steadily in the right direction.

Some of our top leadership & HR professionals heard first-hand what this population needs AND what it has to offer. And some of my closer coworkers - managers and staff I've worked with since I began with the firm - learned first-hand things I hadn't been able to convey in that time. When they introduced themselves to the group, at least half of our mentors said "I don't really know anybody with a disability, but wanted to participate because of X, Y, and Z"...but they know me. Hardly a day goes by I don't mention something about my "disability". They work with other people in our office whom I personally know have disabilities. One gentleman even went on to mention problems he has with his joints that was a textbook description of a disability - but said he didn't know anyone with one.

This didn't escape the notice of our mentees, either. As we sat around a table, eating lunch and discussing these observations, we shared a look and an unspoken affirmation - by putting ourselves on the line (for in this way, I was more like my mentees than my coworkers), we had finally reached these people. They came in thinking they didn't know anyone with a disability, because even people who told them outright then operated under the guise of "being normal" so familiar to all of you reading this. But there, in a room where the entire focus was on the disabilities, these same people began to get it. And, they rose to the challenge.

My one friend, who I mentioned above, has been a tough one to get involved. He didn't answer my invitation emails, didn't respond to my follow-up texts. Believing he was just too busy to get back to me, I finally cornered him in the office one day. In my oh-so-delicate way of arm-twisting, I pushed him to at least give me a firm yes or no. That's when I discovered he was avoiding me not because he couldn't nail down his schedule, but because he was afraid. He said he didn't have much experience interacting one-on-one with a person with a disability, and was afraid he wouldn't handle it properly. In that moment, I was reminded that my coworkers are going through a learning process just like me. I live in this world every day...every minute of every day, really...but my second nature may be foreign to them. So, I reminded him that in his new role as a manager, he now had a responsibility to learn to handle that situation. He will inevitably work with someone with a disability in the future. And this event, with it's controlled environment and predetermined schedule, would be a safe opportunity to dip his toe in the water. I armed him (and all our mentors) with information on how to discuss the topic of disabilities without violating privacy rights of our mentees, as well as the various programs offered by the firm to deal with issues from flex time to accomdoations requests. I also later found out our partner, who had declined to participate in the event herself, did so in order that she could do the work that would have tied him up that day so that he could participate. And my friend did himself proud. As I said, his mentee raved about his experience, and my friend commented that he learned a person with a disability is like any other employee.

I think this is a key we need to consider. Would it perhaps be more appropriate, and effective, to change our language? What might happen if instead of saying "I AM the same as you despite my disability", we said "I am WORTH the same as you, regardless of my disability"?

Our disabilities aren't something we can compartmentalize. We can't leave them at home, or lock them in a drawer for the workday. Instead of trying to be the same, what if we made them the focus of the conversation, and show that we are not the same but are equal? By wanting to be seen as the 'same', aren't we really authorizing society to turn a blind eye to disabilities themselves? Maybe the way to change society instead of just laying a new framework on top of it is by putting the spotlight back on the disabilities. Take them out of the shadows where they can grow and morph into insurmountable roadblocks and brightly illuminate the role they truly hold.

Lightbeam image found here.

So Many People Think I'm Crazy - But I Had That Ruled Out

2011-10-30T23:35:00.000-04:00

"Thanks for caring, because so many people think I'm crazy - but I had that ruled out."

This came from Sarah, a friend seeking a diagnosis for her invisible illness, while she was in the emergency room for the umpteenth time over as many months with crippling pain and other mystery symptoms. She texted me because the nurses in the department were making comments about seeing her "back again" and the doctor wasn't considering any new advice, tests, or treatments. It's a problem so many of us have been through (and may go through again someday). But Sarah knew she had someone - a network of people, really - she could reach out to that would remind her she's worth the fight and in very good company. She had a place to go to recharge emotionally; to be reassured others go through the same challenges and find answers; to share the humor we must use to keep this experience in it's place as a part of our lives without defining our lives. It's great she can put this humorous spin on a challenge common to us 'sickies', and it's made even more powerful by sharing it with people who can laugh at it together.

Image found here.

This is my 100th post. I've been a "blogger" for 2 years, 1 month, 3 weeks, and 6 days. I'm in shock.

I'm not a writer. I hated journaling assignments in school, and never kept a diary. Technical or persuasive writing are fine but "creative writing" always made me cringe. The last creative writing project I remember not hating was a story I wrote in 1st or 2nd grade called "*69" (it was a mystery...noo noo noo noooooo....). And introspective writing just made me uncomfortable.

But I've come to realize this blog isn't about introspection. It's about a connection with Sarah, and Julia, and Amy, and the other Amy, and Alicia, and Lisa, and the other Lisa, and Genevieve, and Annie, and Jen, and Jenni, and Mark, and Phil, and Mike, and Tiffany, and Casey, and Ellen, and the dozens of others too numerous to list. It's about a relationship with organizations like KPMG, the Sjogren's Syndrome Foundation, the Leukemia & Lymphoma Society, WEGO Health, ImageThink, TheBody.com, the Advanced Learning Institute, DTC Communications, Springboard Consulting, THINK-Health, Klick Pharma, HealthCentral, the Digital Health Coalition, Rest Ministries, and ePatient Connections (again, among countless others). Above all, it's about putting these networks to work for each other.

My posts discuss communities out there, information you share with me, conversations happening all around us, and sometimes even your own words and messages. Sure many posts are in my voice, but it's only by telling you about myself and reading about you that we bond with each other. "My" experiences aren't about me as Jenny, but me as a patient, employee, student, volunteer, wife, daughter, and activist.

I mean it when I say "UII" is about "we", the community of chronic patients, family, friends, and caregivers who represent so much of our society. In meeting you through "UII", I've gained so much. I have new insight into my own ideas and aspirations - like confirming that I should continue "UII" and take it to the next level. You've helped me refine my goals - like realizing it is appropriate to narrow the scope of "UII" enough to provide more focused and valuable resources. You've shown me how little I know on my own - like the value of social media outlets and health options I never dreamed existed.

Like Sarah, I need to thank you, for sharing your experiences, knowledge, dreams, fears, and lives with me. Thank you for answering questions, steering me in new directions, and bringing others into the conversation.

Thank you for reminding me I'm not crazy when, like Sarah, I find myself surrounded by those who would convince me otherwise.

Thank you for 2 years, 1 month, 3 weeks, and 6 days of the best education on Earth. For an educational program from which I hope I never graduate. For great laughs, better ideas, and blessing me with your friendship. For loving me for the little I am, calling me to be more, and never making me feel that I'm not enough. You're special people who take "UII" from a fantasy of mine to a reality of ours, and I'm glad we've met.

After the Honeymoon: Chronic Illness in the Workplace

2011-10-09T23:40:00.000-04:00

October is National Disability Employment Awareness Month (NDEAM). Therefore, it seemed like a good time to tell parts of my story relating to being "disabled" with chronic invisible illnesses as a young adult in the workforce. A lot of the patients I hear from faced the challenges of developing these illnesses in their 40's (give or take) and having to leave the workforce; there is much for me to learn from their experiences, but I need to apply it in a different way as I entered and try to make my place in the workforce. At 45, it's hard enough to give up your job - at 15 (age at diagnosis) it's really not an option. Hopefully what these patients went through can help me in this challenge.

In my last post, "Once Upon a Time: A Tale of Disclosure", I discussed my decision to disclose my illnesses to my firm before I was hired full-time. Now, I'd like to share how I approached my first few months (which included my first Busy Season) and when I realized I needed an accommodation. To be clear, I'm not suggesting all other chronic patients follow in my footsteps, but we can learn a lot by examining the way other people make these decisions and that's what I hope you take away.

Cartoon found here.

When the honeymoon was over...
I spent my first 6 months or so as an auditor trying the full grind to see what I could handle. By then, I realized the travel was one of my biggest problems - at least, of the problems we could do something about (as opposed to the excessive overtime that's part of the biz - my rheumy still isn't happy with me about that). Up until that point, my "disability" had been mostly talk; the firm knew about my medical situation since I externed (the summer before my internship) but I hadn't needed any real accommodations. We knew I was different in theory but I had acted and been treated like anyone else, so far. In a way, this was like a couple's first big financial decision - it can solidify their relationship or send them running for the hills and the nearest divorce attorney.

With this in mind, I wanted to come to the table asking for an accommodation to reduce my out-of-town travel with some possible solutions in hand, so I developed a list of clients in my preferred industries which were local enough to avoid an overnight stay. I think this is when I developed my concept of "making accommodation feel like collaboration". While I never actually ended up on any of those engagements, it showed the powers that be I was only looking for them to meet me halfway. Which they did.

There are, of course, imperfect moments. I've dealt with some team members who could stand some serious sensitivity training (not to mention an education in health issues in general...or even just in manners). As I mentioned, the hours are an ongoing struggle. Even as I enjoy the support of the rest of my coworkers allowing me to advance on par with my most ambitious peers, I also face the other edge of the sword with dramatically increasing responsibility (read: stress, anxiety, and reduced tolerance for foggy brain days). But I couldn't ask for much more than an environment in which I can safely and comfortably discuss my medical challenges even while managing local and national projects which just happen to be part of my dream.

But not everyone has found their Prince Charming.
I know I'm one of the lucky ones. I know some day my luck may change. I know some people are ready to throttle me for telling this tale. Knowing how many of my "spoonie" peers are in the exact opposite (and often sinking) boat makes this whole thing a little bittersweet. I'm not oblivious to the horrific injustices so many of you go through for employment - if you even can work at all.

I can only explain my decisions. I wanted you to know, especially during National Disability Employment Awareness Month, WHY I disclosed to KPMG. It was a damn big risk- I was already taking an extra year and most of my student loans to graduate college, if I had blackballed myself among the top employers for graduates I would be in a BAD place. I didn't make the same decision to disclose to my employer during college (when I worked part-time for a small construction company). And I don't suggest that everyone else should follow my lead.

But eventually someone has to take the risk. It's not just for myself, it's also for everyone else who needs their job. If we all hug our cloaks of invisibility tight for fear of what society's ignorance will do to us, we only make it worse. Those of us blessed enough to have a chance to cast off the cloak, I believe, have the responsibility to do so, and fight ignorance with information. And above all, I want you to know these situations and employers do exist. KPMG is just one of the "good companies", but since job seekers don't have to disclose, it's hard for these companies to reach us.

Look for more posts this month about my experiences as an employed person with a disability. Have your own experiences, thoughts, or ideas to share? Leave me a comment, or better, write a post and comment with the link! Mine is only one perspective, we need many to get anywhere.

Once Upon a Time: A Tale of Disclosure

2011-10-03T23:13:00.000-04:00

"If there's something you're passionate about, talk about it constantly. Tell everyone you meet, every chance you get. You never know who will be that connection you need; who is in a position to help make it happen; who you will meet that has that passion too."

This is the best piece of advice I have ever been given. This gem came from a partner at KPMG who I met during a networking event as an intern in the summer of 2007. It is, as are most strokes of genius, extremely simple. You don't need to explain the logic behind it, like that feeling you have in your heart when you simply know something is true. And quite honestly, it's pretty funny that someone had to tell me to do this (I mean really, am I ever NOT talking about a passion?).

But as obvious as this advice is, when your passion is something as emotionally and socially charged as disability and health issues it's easy to repress instead of express. We know that feeling when the person we're speaking to is tired of hearing what we have to say. We've lost friendships and relationships when the pervasive effects of our conditions were too much for someone else to handle (ignore the fact that we have to handle it, like it or not, every day without reprieve). We dream of a chance to forget and experience life without that chronic lens. If so many people - including ourselves - are sick of hearing about it, why would we bring it up to strangers?

I bring it up because for me, invisible illnesses & disabilities are not something I live with privately. They are a passion, and part of my dream. I want to build a network, support system, resource base, and education program for people affected by chronic and/or invisible illnesses. You know this dream as "UII".

That summer, UII was little more than a small Facebook group without much activity. I had begun working with the Office of Health Promotion at Villanova on my first IRL (In Real Life) awareness event to be held in October, 2007. I knew I had a passion, but was certain of little else - I didn't know if I could be successful in this work, or even how this work would take shape. But I was given advice and I took it to heart.

At the end of the 10 week internship, I had an exit interview with a partner from my alma mater. He was very interested in my 'big picture' plans. KPMG is one of those places that likes people with plans, goals, and passions - we are hard workers and go-getters. So, when asked what I wanted to do in the long run (it's an accepted fact that most people join the Big 4 to prepare them for something else), I told him my passion. He responded with the name of an author (and as I would now term him, a health activist) who was writing on a theory about the link between stress and chronic illness. And some words of support for my plans. And my offer to join the firm.

And so we've lived (mostly) happily ever after, KPMG and me.

I'll be honest, it's more like a real marriage than a fairy tale:
For better (the Disability Network) or worse (busy season hours & flares),
for richer (this year's raise) or poorer (last year's raise),
in sickness and in health (well, that's a gimme)...
And there are days I think it will be death that will do us part.

But I'm still here, kicking and screaming (yup, this really is just like a marriage):)
(Stay tuned for part 2, where I discuss some of my experiences actually working for the firm and the man-on-the-ground challenges II's bring!)

Image found here.

Enjoy October, which is National Disability Employment Awareness Month. I have some special topics in store, along with those I've already promised to cover. I wonder if I can pull off a mini-series here...hm...guess you'd better stay tuned;)

Say WHAT?!

2011-09-22T10:55:00.000-04:00

This past Monday, I had quite a thrill when I got to work with 19 other health activists from many parts of the country, right here in my beloved Philly. Imagine a room with 20 passionate people: a few were more soft-spoken than me, prefering to quiety listen and gather their thoughts which they then shape into powerful messages; a few actually made me look demure (if you can imagine that); most are patients but the group also includes caregivers, professional patient advocates, writers, and community leaders; the activists range in age from me to our senior statesman in his early 60s. We came together (thanks to sponsors & supporters the Digital Health Coalition, Klick Pharma, ImageThink, Health Central, The Body.com, and WEGO Health) with the idea of an ePatient Bill of Rights in mind.

Pretty explosive set-up, if you ask me. Could easily have become a Hiroshima situation. However, these activists were not only passionate, but extremely bright, insightful, well-versed in their particular area, and oriented toward the good of patients everywhere. What could have been an atomic disaster was more like the best fireworks display I could imagine.

And a display that I'll be posting about soon, I swear. I'm going to share with you the magic sign that represents the outcome of our session, major themes discussed, questions & concerns I want to hear your thoughts on, and where this is all going from here...just as soon as I can possibly get the post written. But as I had to take time from work at a critical point in my current engagement to attend, I'm even MORE backed up! I'm also trying to plan my office's Disability Mentoring Day as part of the National Disability Employment Awareness Month in October (yet another amazing post topic coming your way). So, to do my post on the Coalition justice, I just ask that you bear with me a few more days so I can get it together.

But not to leave you high and dry - here is a picture from the session. As you can see, I am making some (no doubt, mindblowing) point to the group...and talking with my hands. This is apparently a ubiquitous "Jen" pose. I think I remember what I was saying at the time...but would love to hear your guesses! So let's have a little game, shall we!

WIN A UII PRIZE!!
Take a look at the picture below, and leave a comment with your guess at what I'm saying! (Funny or serious, just not crude or offensive please.) You have one week (cut off will be midnight on 9/29), at which point I'll pick the best and send you a small prize!! You can also leave comments voting for responses you like best:)

Ready, get set, GUESS!

Awesomeness: Telling Doctors "No" and Doctors' Medical Arrogance

2011-09-15T22:58:00.001-04:00

In honor of Invisible Illness Awareness Week 2011, I thought I'd share some key posts by a very talented fellow blogger.

This "pro-writer turned pro-patient" really shines. These posts are something mine rarely are - brief:) Read about these two momentus and very timely issues. It will take only perhaps 5 minutes total, but I promise they will have you thinking for days (and days and days...).

Make This Look Awesome...: How do you tell a doctor you don't want to comply ...: My new doctor expected to show me how my claims for Autoimmune Hypophysitis were misguided. That hasn't happened.

Make This Look Awesome...: Medical Arrogance and the Effects of Prejudice: One of the most fascinating stories I have run across about medical arrogance is actually a story about doctors turning on one of their own.

It's like a crash course in patient self-advocacy!

History Reinvents Itself

2011-09-13T23:18:00.000-04:00

Philadelphia has so much history, it could make a person lightheaded. I guess being one of the original 13 colonies, the first to support religious tollerance for all people, and home to game-changers such as Benjamin Franklin sets you up to be an amazing place. Philly was the largest city in our country's early years, and the first official capital city until D.C. was built. She's the birthplace of many crucial techonologies and services, such as printing in the colonies, free libraries, hospitals, volunteer fire companies, and even medical schools. And don't forget some of the first and most-enduring US icons, including the Liberty Bell and Independance Hall. Our streets today are jammed with amazing architecture representing hundreds of years of immigrants bringing old-world styles alongside new-world ideals and the evolving needs of an evolving population.

Image found here.

Perhaps because of this extensive & long-lived history, I think all Philadelphians have a little kernel of patriotism seeded deep in our souls. We may not always realize it's there, but give us a chance to stand side-by-side in honor of what's great about our country - or even to try to fix what is flawed, as did our forefathers - and it blooms.

It therefore seems only fitting that next week a group of people representing different communities will come together to discuss, debate, and draft another 'revolutionary' document - about 300 ft from Billy Penn himself. (For any non-Philly history buffs, Billy is a larger-than-life statue who sits atop City Hall, is the largest freestanding statue on any building in the world.) Next week, Philadelphia will play host to the Digital Health Coalition and their 20 recruited health activists who will draft the ePatient Bill of Rights.

Image found here.

As a native Philadelphian and rabid health activist, I am honored and excited out of my eyeballs to be one of the 20.

The document we draft will be used to spur discussion and action throughout the digital community. It will undergo a public comment period, and serve as a kickoff for a powerful media & policy push. The day spent building this platform (Monday, September 19) will be recorded. Our goal is to work toward an "ideal world" for ePatients. And, our product will be unveiled during the succeeding two-day ePatient Connections Conference.

Image found here.

I invite any thoughts you want to share, any messages you would like me to carry to the table. The point of all of this - the Coalition, the Bill of Rights, UII itself - is to make sure the work done by one is for the benefit of many. Therefore, the more interests I can represent, the better off we'll all be.

Do you think I'll get to sign anything with a quill pen? I've always wanted to use a giant quill...I think it would be quite dashing!

Drawing found here...and, I hope, at the table next Monday!!

IIAW 2011: 30 Things

2011-09-07T23:55:00.000-04:00

It's that time of year! Time for the Invisible Illness Awareness Week "30 Things meme". You can learn more about the meme, the awareness week (a national movement started by Lisa Copen) here. Sign up for Lisa's emails (packed with valuable links), and receive the download for a FREE eBook covering many aspects of life with chronic illness (including a chapter by yours truly). This year's IIAW is September 12-18!

Please post a link in the comments to your meme! Sharing these responses is one of the most exciting and powerful aspects of this movement. Enjoy!

1. The illness I live with is: Sjogren’s Syndrome, Fibromyalgia, Dysautonomia, Localized Scleroderma, & Raynaud’s Phenomenon.

2. I was diagnosed with it in the year: Started getting diagnoses in 2001, at age 15

3. But I had symptoms since: 2 years old (1988)

4. The biggest adjustment I’ve had to make is: Knowing if I don’t make decisions to limit my activities, my body will do it for me and not the way I would have chosen to do it.

5. Most people assume: Either that I’m exaggerating my experience, that I’m a hypochondriac, and/or that OTC treatments should be enough.

6. The hardest part about mornings are: Moving. I tend to be stiff and achy when I get up, and my hands & feet are puffy (inflammation more than fluid retention).

7. My favorite medical TV show is: I can watch a few episodes of Royal Pains, but I spend most the time arguing about the realism. Won’t go near Grey’s Anatomy, House, HawthoRNe, etc.

8. A gadget I couldn’t live without is: My large microwavable heating pad. I can hug it, lie on it, squish it into a shape, toss it in my suitcase, use it at work, or heat it up before leaving home/work and have it in the car. I have a slew of other “warmth” products, I ‘ll have to write about it sometime.

9. The hardest part about nights are: Falling/staying asleep, poor sleep quality, certain bone pains that come on at night, almost always being too cold….

10. Each day I take __ pills & vitamins. (No comments, please) 5-9, not counting ibuprofen.

11. Regarding alternative treatments I: have tried a combo of moist heat, mild electrostimulation, and chiropractic therapies which was very effective. Unfortunately my local practitioner had to relocateL

12. If I had to choose between an invisible illness or visible I would choose: We can all agree there are things about having an invisible illness that would be more straight-forward if it were visible (mostly with how others treat us). However, I do like having the choice – sometimes – if and when I want to tell someone.

13. Regarding working and career: So far, (basically) so good. Some challenges I have/had include: travelling caused problems, we work way too many hours, and its high-stress by nature. I travel to different client sites, so I have to carry a lot of things with me and can’t settle in with things like ergonomic chairs. But, my employer is pretty amazing – for example, they work with me for my accommodation to reduce travel. And through being part of their Disability Network, not only can I be upfront about my limitations but have even gotten very valuable opportunities to hold a leadership role working with those far above my level on many projects. Overall, I struggle to handle this job, and can’t help but worry how long I’ll be able to, but for a shaky little rowboat at least it has good buoys.

14. People would be surprised to know: I doubt myself and question my limits every day. People tell me (close friends and web acquaintances alike) that they can’t understand how I do so much – and the truth is neither do it, nor do I know that I’ll be able to finish things when I start them. I’ve a deep seeded fear of what I won’t be able to do tomorrow so I have to do it today.

15. The hardest thing to accept about my new reality has been: the roadblock it creates to forming friendships the traditional ways. Sometimes it’s the result of skipping certain events, but other times it’s due to live decisions I’ve made based on my conditions. For example, I didn’t live on campus in college, as I knew I needed family around to physically support me when I flared. This had a major impact on my social connections.

16. Something I never thought I could do with my illness that I did was: my job. I’m an auditor, which means an average of 55 – 60 hrs per week (far more during busy season). Every day I do tasks that don’t require a second thought for other people but are a challenge for me, from traveling to carrying files around all day.

17. The commercials about my illness: don’t exist…however, Venus Williams was just diagnosed with my predominant condition (Sjogren’s Syndrome). Therefore, there has been a sudden and overwhelming media outburst, bringing rare attention to the problem!

18. Something I really miss doing since I was diagnosed is: walking in the rain. I actually don’t like storms, but if I had to get caught in a basic downpour or drizzle it was no big deal and could be kind of fun. Now I go to great lengths to avoid getting wet in the rain, knowing it bring the risk of a respiratory infection and the promise of joint & bone problems.

19. It was really hard to have to give up: s

20. A new hobby I have taken up since my diagnosis is:
21. If I could have one day of feeling normal again I would: I don’t know what that feels like. I had joint, eye, and mouth symptoms going back into my early childhood among other problems. However, if I could have a time of physical abilities back, I would spin a color guard show one more time.
22. My illness has taught me: a work ethic. To care less what people say. To gear my life toward helping others. If I go through something bad, I make myself ask “how could people who will face this next be helped, and what do I need to do to make that happen”.
23. Want to know a secret? One thing people say that gets under my skin is: “at least you don’t have ____”. I’ve said it before and I’ll say it again – if you total your car in a horrendous crash and break both your legs, yes, it’s true it could be worse because at least you’re alive – but you still have two broken legs! Why do people think just because it could be worse it isn’t bad at all?!
24. But I love it when people: ASK QUESTIONS. I love when people ask me what my conditions are, how they affect me, how a specific situation might impact me, what I do about problems, how I want them to help me, etc.
25. My favorite motto, scripture, quote that gets me through tough times is: I have a few so it’s hard to choose, but two of my favorites are the quote by Shelby in Steel Magnolias which sums up my perspective on life “I need your support. I’d rather have 30 minutes of wonderful than a lifetime of nothing special”; and the Robert Ingersoll quote, “it is a blessed thing that in every age someone has had enough individuality and courage to stand by his own convictions”.
26. When someone is diagnosed I’d like to tell them: do your research and hold to your priorities. While you can’t put your head in the sand, you don’t have to give up everything that makes you happy either – if hiking mountains is what makes you happy, gear your health plan toward that goal instead of telling yourself it’s gone forever.
27. Something that has surprised me about living with an illness is: the self-respect it helps teach me. Yes, I often feel bad about myself, hate my body, or feel guilty for how I impact those around me…but I’ve learned that it doesn’t mean I have to put up with cruelty, being marginalized, or being used. I have so much to do and so little time and resources in which to do it, I don’t have time to be bullied.
28. The nicest thing someone did for me when I wasn’t feeling well was: my favorite “little thing” is when my best friend asks me where I hurt today before she hugs me. The world could be crashing down around us, but she doesn’t lay a finger on me until she knows how to hug me without hurting me.
29. I’m involved with Invisible Illness Week because: it is a national (sometimes international) celebration of the joys & struggles I live with every day.
30. The fact that you read this list makes me feel: real, appreciate, and visible.
I can’t really say. I was diagnosed a decade ago, at 15, so my interests have changed a few times, as you would expect for a teenager.
inging. This passtime, which had always been one of my favorite things, lasted a year into my college experience. However, I then began to find my Sjogren’s dryness has damaged my vocal chords/throat, making singing all but impossible.

And Now a Word From the Sjogren's Syndrome Foundation

2011-09-01T21:25:00.000-04:00

In reaction to the news that broke yesterday when Venus Williams revealed her recent diagnosis with Sjogren's Syndrome, the SSF issued a press release for immediate distribution. Naturally I'll be sending this to all local outlets, but I also thought I should share it with you. I'll have to write a separate post regarding my reaction to the news (and news outlets' coverage thereof), but for now please enjoy and share the reaction of the Sjogren's Syndrome Foundation!

And after that, read this article on Tennis Grandstand - it's by FAR the most accurate article yet!

Sjögren’s Syndrome Foundation Supports Venus Williams

Photo found here.

The Sjögren's Syndrome Foundation (SSF) was saddened to hear about Venus Williams’ diagnosis of Sjögren’s syndrome and supports her courageous decision to step forward and share her diagnosis.

Steven Taylor, CEO of the Sjögren’s Syndrome Foundation, states that “on behalf of the 4 million Americans with Sjögren’s, we applaud Venus for publicly stepping forward and shedding light on this serious autoimmune disease. Her courage gives hope to the many who live silently with Sjögren’s because of the lack of awareness around this disease.”

Although not always life-threatening, Sjögren’s can cause debilitating and life-long complications and have a profound affect on one’s quality of life. At the same time, many Sjögren’s patients fortunately live healthy and productive lives free of major complications.

Sjögren’s syndrome is the second most common autoimmune rheumatic disease and 3x more common than better known related diseases such as Lupus and Multiple Sclerosis. The disease affects the moisture-producing glands which can cause dry mouth and dry eye. In addition, fatigue, muscle pain and joint pain are prominent symptoms while serious manifestations can occur with life-threatening lung involvement, central nervous system complications and cognitive functioning.

As Venus stated, she “is thankful to finally have a diagnosis,” and the Sjögren’s Syndrome Foundation is glad that she now has peace in knowing what was causing her symptoms. Unfortunately, many Sjögren’s patients face the same struggle with trying to get a diagnosis that, on average, takes 6.5 years. The Sjögren’s Syndrome Foundation is launching a major new initiative this fall aimed at reducing the time from onset of symptoms to obtaining a diagnosis.

This October, the Sjögren’s Syndrome Foundation will formally announce plans to achieve a new breakthrough goal of “shortening the time from the onset of symptoms to a Sjögren’s diagnosis by 50% over the next 5 years.” The SSF will be introducing national initiatives and programs to help educate the general public and healthcare professionals. Steven Taylor, CEO of the Foundation said, “We hope Venus will consider helping us with this bold initiative, as it will take many to make this goal a reality.”

**Arrangements can be made for interviews with local Sjögren's patients, healthcare professionals as well as Steven Taylor, CEO, of the Sjögren’s Syndrome Foundation.*
(Jen's Note: this statement is referring to the Sjogren's Awareness Ambassadors, of which I am one, so please feel free to contact me or the Foundation if we can speak to someone from your organization!)

Deadline Extended

2011-08-31T10:49:00.000-04:00

Dear Readers,

WEGO Health has decided to extend the deadline for readers to fill out the Reader Insight Survey to the end of this week. Thank you to those who did fill one out for me, I look forward to seeing what you had to say when the results are provided to me at the end of the program.

Based on the latest update I received, however, there are very few of you (who filled out the survey). I believe the count of those who actually took the survey was 4. I have over 1,000 hits on my blog this month. I kind of doubt that each of those 4 people visits my blog 250 times in a month, so that has to mean there are more readers stopping by, and I'd really appreciate your feedback. Some people have told us they don't understand why the survey asks questions to determine what kind of health activist the reader is - but it does have a purpose. By understanding how you use information, I can try to provide more relevant and useful posts to you in the first place.

I really hope more people will jump in with the very kind Fabulous Four who have filled this out for me (and remember, if you filled it out for someone else's blog, that doesn't count for me so you'll need to do it again following my personal link). Please please PLEASE fill out the survey for UII, here (http://bit.ly/onFNFA). Thank you!

(And by the way, just WAIT until you see the next few posts I have in store ^-^ :D).

Reader Insight Program - Update & Plea!

2011-08-23T14:30:00.001-04:00

Image found here.

You may remember that I’m currently participating in WEGO Health’s Reader Insight Program – helping me to improve my blog with direct feedback from you, providing you with instant social media tips, and finding the Health Activists among you for exclusive invitations to WEGO Health programs.

The program has been going on for about a week, and WEGO Health just sent me an update. And honestly, the numbers are so low I can't even bring myself to share them with you.

I know this is yet another survey, yet another link, yet another set of questions you're probably tired of asking yourself. But, this is also one of the few ways I can get any information or guidance.

There are a number of approaches to being a blogger. Sometimes a person blogs because they want to discuss or share all kinds of things going on in their own life. They may not even care if people read what they write, or hope that those who do read it are entertained. Other bloggers are like clearinghouses for information. They may never write anything personal, and most posts are about things they've learned, read, heard, or found online. They are obviously trying to be helpful in the way they are most comfortable - constantly passing along information, whether about a specific topic or general news.

Then you have the rest of us. Many bloggers post a variety of entries, sometimes passing on information, other times sharing a part of their personal life, and sometimes asking questions. We are trying to interact with our audience. Most bloggers I follow are like me in this way. But we can guess what our readers care about for only just so long. Eventually we need you to interact with us.

You know how I feel about WEGO health. I mention all the time that I enjoy being a part of their network and have had many great experiences and opportunities at their hands. But I don't expect everyone reading my blog to want to do the same. If you don't want to join WEGO, that's fine! Not a problem! It's just not your thing. But even if you don't want to join, you can take the very quick survey and help me out. It will ask you a few questions aimed at determining your style of health activism - that's what WEGO's about and all - but also about why you read my blog, what you like, what you dislike, what I can do to be more relevant for you. THOSE are the questions that I need you to answer.

My recent post about chronic pain is getting quite a bit of attention, thanks to Kelly at RA Warrior who included it in her blog carnival (you can see the other responses here). The only reason I knew to put up a post on this critical topic is because Kelly interacted with me (as her reader) and brought up the idea. I want to write many more useful, relevant, meaningful posts, but I NEED to hear from you to do it.

The program will be going on for another week, so if you haven’t had a moment to take the survey and share your thoughts yet, I hope you will! Here’s the link to share feedback with me: Reader Insight Survey. I really hope you'll help me out, because I want to have the best impact possible and need some guidance to do it!!

The Smell of Clean

2011-08-17T22:40:00.000-04:00

It must have been a week of really good posts! Another of my blogging friends, Miss Diagnosis of A Fragile Faith, put up this useful post recently (see link below).

I know a lot of my readers have sensitivities to many chemicals. Personally, I'm noticing gradually-increasing reactions to everything from perfumes to unvacuumed spaces (which REALLY puts me at a disadvantage in my own home...let's just say I will never be known for my housekeeping).

We usually do laundry at my parents' house each weekend when we go over for Sunday brunch (no we're not upity, we just go to church first). We always used scented detergents when I was growing up, but a few months ago my parents found a deal on one of those "free" detergents, without fragrances or dyes. Holy shnikes, is that stuff good. I didn't think it was such a big deal at first, but last week we did laundry with the scented degertent that was on sale this time and I seem to be itchy and sneezing all the time. And, this detergent's called "Mountain Fresh Scent" - I'm not sure what a mountain smells like, but I just keep remembering what bears do in the woods...

And on that note, please, enjoy The Smell of Clean:)

Picture found here - I think I'll make this my motto.

Sjogrens Syndrome Medication | Treatment for Sjogrens Disease

2011-08-13T21:02:00.000-04:00

As you know, at UII we try to stay focused on hope. So long as there's a tomorrow, there's hope - for a treatment, relief, a cure. For understanding, for compassion, for education. For laughter, for friendship, for peace. If nothing else, for a miracle.

This lovely photography by Caroline, found here.

My base level is pretty hopeful. I have my low moments like everyone else...times when I'm depressed, when I frankly don't want to move past my negativity in the moment to think about the hope of tomorrow...but they pass. I see myself as an optimistic person, but some news recently took me by storm. I found an article on Arthritis Today about MULTIPLE advances in treatments for Sjogren's Syndrome, ranging from drugs to biologic therapies (see the article, link below) to gene therapies...and even artificial salivary glands! OMG!

That's what really pushed me over the edge. The idea of an artificial gland to restore oral moisture (dry mouth's one of my more prominent symptoms)...well it's almost too much to imagine. I thought I was usually hopeful, but when I read this article and had this dramatic reaction, I realized how hopeless I had been.

I had hope for societal changes - understanding, an interest in learning, acceptance - but it seems I never really gave much thought to medical hopes. I could talk about hope for a breakthrough, but hadn't considered the reality of that hope and what it could mean for me.

Many of us have been asked that (somewhat ridiculous) question, "if you could magically make it happen, would you like to be completely cured". I think a lot of people share my reaction that actually, I'm not sure I would. My experiences as a patient are a BIG part of who I am and why I'm who I am. If I woke up one day with the need for those experiences gone, who might I become? Maybe I'm better off carrying my cross everyday so I remember who I am.

But that's when it's a magical, mythical, cured state. What if I could undergo a procedure or treatment, or maybe an ongoing treatment, to be "cured"? If it weren't magic, but validated science? This is another thing entirely. This, I think, could be the best of all worlds. I could have relief but still remain connected to 'who I am'.

And as a side note, for the record, to me this scientific cure would still be a miracle. People think of miracles as something unexplained - but I believe most times they are perfectly explainable and still a gift from God. Did you ever wonder WHY a cure came out when it did? WHY someone came upon a person in an emergency when they did? WHY the rainbow appeared on a day when someone needed to see it the most? Can't science have "solved" a problem because God led them to it? I'm quite sure it's all God's doing.

But I digress:) I'll leave you with my hope, and the article on Arthritis Today responsible for it. Perhaps it's not coincidence that I found the article at all....;)

Arthritis Today Article: Sjogrens Syndrome Medication Treatment for Sjogrens Disease

Enjoy!!

Readers – Help Improve My Blog & Share Your Thoughts!

2011-08-13T19:05:00.000-04:00

I wanted to share this new project I’m working on with WEGO Health to learn more about my blog and about all of you who read it!

First some background: For those of you who aren’t familiar with WEGO Health, they’re a different kind of social media company focused on helping Health Activists – folks like me who use the internet and social media to connect with others around health topics. WEGO Health’s mission is to empower Health Activists to help others, and they offer Health Activists the chance to get involved with video through WEGOHealth.tv, to learn and connect through webinars and chats, and to gain a voice in the healthcare industry through insight panels and the Health Activist Speakers Bureau.

Now WEGO Health is launching the Reader Insight Program – helping Health Bloggers like me to gather feedback from their readers, while telling you a bit about yourself. At the same time, WEGO Health has a chance to see if any of you are Health Activists eligible for their programs. I know many of you out there are as dedicated sharing health info and I have a feeling you’re Health Activists too!

I agreed to try the Reader Insight Program because I’m excited to learn more about why you visit my blog and how I can make it even more valuable for you. I hope you’ll take a moment to share your thoughts with me by taking WEGO Health’s Quick Quiz (http://bit.ly/onFNFA). By taking the quiz, you’ll help me learn what you need – and you’ll also receive customized social media tips for yourself!

A few things to know about the program:

- WEGO Health will gather your quiz responses and feedback for 2 weeks starting today. After the 2 weeks are up, they’ll create a Reader Insight Report for me (then I’ll share it with you!)

- Your responses will be shared with me anonymously – please be candid!

- Your information will not be shared or sold by WEGO Health

Thank you for helping me make my blog even more engaging! I can’t wait to see you what you think!

Pain Relief - Reality for Chronic Pain Sufferers

2011-08-12T12:22:00.000-04:00

Kelly (aka RA Warrior) blogs about every aspect of life as a Rheumatoid Arthritis patient. You can read about her experiences (and knowledge gained about) dealing with family, responsibilities, doctors, diagnoses, treatments, even the media and government, at her blog. While Kelly's posts are focused on RA, we all know that these conditions overlap and we experience many of the same things with other diagnoses.

Recently, Kelly posted on the vital topic of pain relief. Then, being Kelly and all, she took it a step farther and invited her readers to post on the topic as well for a blog carnival. And, well, here I am:)

I wanted to focus on what I consider to be a fundamental issue for chronic pain sufferers, and one that (in my experience) isn't examined directly often enough.

As Kelly mentioned in her post, there is a lot of conversation on the issue of pain relief efforts by doctors / caregivers. Patients, especially those in chronic pain (who are often mistakenly labeled as drug-seeking) and men, frequently find their complaints of ongoing pain are dismissed. They get responses like "it should get better with this treatment" (excuse me? "Better"? What does that even mean?!), or "try using heat/ice/Tylenol/AnyOtherPacifyingMechanism" as if we haven't already tried these usual remedies before 'bothering' the doctor with the complaint. It is VERY true that many (if not most) patients are struggling to have their pain recognized and treated at a basic level.

Unfortunately, the problem doesn't stop when pain is (finally) dealt with by a doctor. Treatments (drugs, holistic remedies, lifestyle changes) usually aren't enough for chronic pain sufferers. So then the discussion evolves to the problem of getting SUFFICIENT pain relief treatments. But, is this realistic?

Image found here.

I'm all about hope - hope for understanding, acceptance, societal change, support, treatment, relief, advancements, and cures. But hope has a caveat. If the basis for hope is not realistic, hope may lead to huge disappointment. To have hope and benefit from all the good things it offers, you have to have a realistic understanding of where you're starting out (this is all part of my "pragmatic optimist" theory). Hope grounded in reality leads to actionable ideas; if we understand where we really are today we can do things to make tomorrow what we hope it will be.

So what is our current reality when it comes to chronic pain:
*We have chronic pain - which means we have ongoing pain over a long period of time. The pain may come and go throughout the day but return day after day, or it might be pain that never truly goes away.
*We've tried traditional and OTC relief methods - OTC medications (acetaminophen, ibuprofen, aspirin), applying ice or heat.
*We've usually tried alternative relief methods too - massage, rubs, Grandma's never-fail tea & herb drink, hot baths, dietary changes, supplements.

What can doctors do:
*Prescribe medications specifically to relieve pain - codeine, morphine, fentanyl (these turn off pain receptors).
*Prescribe medications to reduce pain by reducing problems (like inflammation) - NSAIDs, steroids, muscle relaxers (these work to reduce the problem causing pain like inflammation or muscles pressing on nerves).
*Order professional therapies - occupational (how to relieve/prevent problems with how you move), physical (how to relieve pain & problems through exercises), orthopedic/osteopathic (adjusting your body for structural irritants (such as chiropractic medicine)).

Now for the reality check -
What are some limitations of these solutions:
*Drug interactions
*Side effects
*Long-term effects of drugs (such as long-term liver damage, ocular effects, kidney damage)
*Expense (high prescription costs and many therapy programs require a copay for every visit 2-3 times per week)
*Time commitments (it's hard to work therapy routines into busy or unpredictable schedules)
*Limited success - There is only so much these things can do. The drugs that address things causing the pain are a great way to go but don't usually relieve all pain. Therapies tend to reduce intensity but often don't eliminate the pain and can even cause other (lesser, usually temporary) ones. The drugs most likely to really eradicate the pain are also the most dangerous - they don't treat the problem so the issue can continue to cause damage, they often involve mental side effects (everything from mood swings to delusions), distribution is usually tightly controlled, and many can cause addictions.

Unfortunately, this means a patient with chronic pain may be expecting too much from modern medicine & our doctors. When we begin a new treatment (pharmaceutical or otherwise), we should discuss with our practitioner what are the REALISTIC benefits we can expect to experience. HOW MUCH pain relief should we look for, and how long will it take to realize? I'm concerned that as patients we are setting ourselves up for failure by looking for complete relief when it just isn't realistic at this time.

Of course, I believe we should HOPE for full relief. We, as people, DESERVE this relief, and we should demand scientists keep working for it. We should still have hope, now that we know exactly what it would take to be real!

In the meantime,
There are a few things we can do to make the most of the reality in which we live:
*Prioritize...and make sure our doctors share our priorities - medications come with side effects and contraindications. But that doesn't mean we have no choices! A patient should decide what he/she can & can't live with, and work with their doctor to align their medicines accordingly. If the steroid you'd need to relief the symptom most intrusive to you interacts with something else you take, tell your doctor that this is more important. They may be able to take you off the other medicine, find out if there's an alternative drug that won't interact with the steroid, or suggest other options to allow you to take the steroid which may make you happier.
The same is true for side effects from drugs - if you can't stand a side effect, maybe the original symptom is worth living with. However, remember that the reality simply is you can't have it all. It's rare you can treat and resolve a symptom completely without other side effects, so have a reality sit-down with yourself and decide which you can live with.
*Take responsibility - let's say your doctor ordered a therapy, but you can't afford (in terms of time and/or money) to go 2 or 3 times a week for 8 weeks. Find a way to go a few times, and consider if you can learn the therapies to do on your own at home. This is usually an option with physical therapies (depending on the safety of doing the exercises on your own), though less so with ones that involve someone else 'forcing' your body (like in an orthopedic setting). If you're considering this, be honest with your doctor and discuss if this is something you can try safely.
*Don't get mad, get creative - If a treatment really isn't cutting it, think in different directions. What about combining different types of treatments; many drugs interact, but what about some medication, lifestyle adjustment, and an alternative therapy? Since they each approach the problem in a different way, it's more likely you'll experience comprehensive relief! Just remember nutritional treatments can interact with prescription drugs, so consult your doctor to be safe. And don't forget seeking spiritual support! But we can address that in another post:)

Image found here.

And if that still isn't enough? Use your voice. Tell the government and science community "hey, the status quo isn't cutting it here". Blog, join an organization, write letters, make phone calls, spread community awareness, reach out to drug companies. Find other people who agree with you and work together. It can become your calling in life, or be something you throw your weight behind when you have some free time. But you will be empowered, and since you can't run a marathon without a first step, your action is pivotal!

No Regrets, on Your Terms (Repost)

2011-08-06T12:19:00.001-04:00

This CPA review is a monster, and has hijacked all my time lately. I'm sorry I haven't been able to post much lately! I take the exam on Monday, so hopefully after that (and a too-short vacation) I'll be back:)

In the meantime, I have a post I originally put up in May 2010 which I think you'll enjoy. Honestly this is a message everyone could take to heart regardless of their health-state, but can be even more important for those of us with chronic illnesses. We face decisions every day about what we can accomplish within our limits, and I don't know anyone who does it without that mustard seed of doubt in the back of our minds about missed opportunities and the fear of "missing out". It's a founded concern - most of us have lost friends and even relationships when we couldn't keep up physically and have to pass on a lot of recreational fun in the hopes of being able to meet our obligations.

But I believe with the right approach, we can do make choices that make us happy while being responsible, and remind ourselves of all our validity and vitality in the process.

Image found here. This cat may be my new hero.

No Regrets, on Your Terms (Originally posted on May 27, 2010)

"Have you ever done something you regret?" I hate that question, because it's just plain stupid. Anyone who's ever blurted out something not-too-bright and had that instant grimace 'regrets' something they've done. I'm only in my 20's, but pull out a picture of me 10 years ago and I'm probably going to cringe about something I wore (and those who have pictures from the early 80's have a lot more to 'regret' than me). And we won't even get into middle school crushes, comedic trips-and-falls, or the various ways pants (or skirts) can inspire more regret than a diet-busting ChocolateFest. Yeah, I'm pretty sure we all have regrets. (However, I'm rarely willing to share them with the anonymous and indefinite public who may read my answer to this question, usually found in online surveys.)

But ask me "have you made decisions - real ones, of substance - that you regret", or if I think that when I'm someday on my death bed I'll wish I had lived my life differently. Go on, ask. I dare you!

You don't have to ask me; I'll tell you whether you want to know or not:) My answer is "no". My life and the decisions I've made so far about it are far from perfect. I've made many mistakes, and continue to do daily (I have no illusions of perfection). But by 'mistake', I simply mean what I've done was not the best or most productive option that existed, and sometimes caused a problem or inconvenience for myself or someone else. However, I don't do just about anything without a reason or purpose (some people would say I over-think everything - I say logic is our most valuable tool; tomayto - tomahto). Therefore, I feel everything I've done and all the consequences thereof have a purpose. Did you notice that - the word "purpose" describes both the motive for and effects of my actions? More than coincidence, if you ask me....

But anyway. Many choices I've made were just plain good ones - marrying Shawn, going to Villanova, all the things I do to try and control my conditions, etc. Some were fruitful, even if not ideal - taking the 5th year to finish my degree and "going public" with my medical issues come to mind.

Then there's the third category. These are decisions I've made which, if viewed from certain perspectives, look pretty bad. Examples would be things such as staying in color guard for my last 2 years of high school, or any time I push my body past a safe point to achieve some other goal. I know that each and every time I do this, I am risking more than next-day soreness. Anytime I wake up aching, stiff, and fatigued because I just HAD to go to that concert or participate in that pick-up game, the aches/stiffness/fatigue are only the most immediate results. They indicate a type of damage which has long-term implications on the speed at which my conditions may progress, as well as the severity they may reach (and no, I'm not being dramatic). But what would be the point in making my body last as long as possible, if I didn't do anything in that time? Yes, I have many things I still want to do that require physically holding up - having kids for instance - but it's a balancing act, not a one-ring show.

Many of you have probably seen the movie "Steel Magnolias" (which, incidentally, is fantastic and I encourage everyone to watch it). No spoilers here or anything, but basically it's the story of Shelby, a young woman who has grown up with Type 1 Diabetes (whadda ya know - an INVISIBLE ILLNESS). At a critical point in the movie (again, don't worry I won't spoil anything), Shelby's talking to her mom about a decision she's made in her life with which her mother disagrees, because of the potential health risks involved. As she tries to defend her decision, Shelby finally blurts out "please Momma, I need your support! I'd rather have 30 minutes of Wonderful than a lifetime of Nothing Special."

Every time I see this scene (and that's at LEAST 30 times so far), it resonates with me. Yes, I have goals and desires and even obligations to other people that mean I am responsible for making good choices regarding my health, but only to the extent that those choices ENHANCE my life (or someone else's). I want my Wonderful. And just like Shelby, I'm going to get it, even though it means making some tough choices and taking a few risks. My path is based on my own priorities and values, which are going to be different for each of us in various life stages and situations. My decisions would be very wrong for many of you, and some of your choices wouldn't ring true for me.

So no, I don't regret my decisions in life, even if they had a cost. Some of them were necessary if only for what they taught me for future decisions (I'm a big believer in the idea that everything's a learning opportunity - if you apply that knowledge later). Some of them, horrible as they seemed at the time, opened doors I couldn't possibly have imagined; that I would have missed if I'd played it a bit safer. And honestly, that in itself is what gives me hope - if I've had this many wonderful outcomes in my brief 24 years, there must be more around the corner! Why do I look for something good to come when I hear bad news? How do I keep from giving up when I get slammed (and don't be mislead, I've had very real bouts of Depression)? Because it happened before, many times. I've gotten miracle after miracle, gift after gift. I've gotten them, as far as I can tell, because I keep looking for them. God helps those who help themselves, which I believe to be absolute truth because when I've seen someone wait for their miracle they rarely got it, but every time I've worked for mine it came through. I know my light's at the end of the tunnel, so I have no problem digging the tunnel myself with every choice I make. I have no regrets - on my terms.

So I ask you, do you have any regrets? Or do you empower yourself, to know when you need to play it safe and when there's something more important to your happiness? Please, live your life so you have no regrets - on your terms.

Julia's a Crackpot (But So Am I)

2011-07-26T10:44:00.000-04:00

I always feel better knowing I'm in good company. I, too, am a crackpot...but Julia of Reasonably-Well put a beautiful spin on it. A quick read that will simply make you smile:) Have a good day!

I'm A Crackpot

Happy World Sjogren's Day!

2011-07-23T13:00:00.000-04:00

World Sjogren's Day commemorates the birthday of Dr. Henrik Sjogren, who identified Sjogren's Syndrome in 1933.

Sjogren's Syndrome is the 2nd most common autoimmune disease in the United States, affecting an estimated 4 million people in this country alone. Sjogren's is synonymous with "dry eyes and dry mouth", but is so much more. Yes, in Sjogren's the patient's body attacks the moisture producing glands and connective tissue which causes these common symptoms - but it doesn't end there. We have moist tissue all throughout our bodies, and all our body's systems are dependant on these tissues. Here is a poster put out by the Sjogren's Syndrome Foundation about just some of the possible effects this disease can have on the whole body:

A few other Sjogren's facts for you:

9 out of 10 Sjogren's patients are women (though there are men out there)
A Sjogren's patient is 44 times more likely than an average person to develop Lymphoma
The typical Sjogren's patient will need about 50 times more dental work in his/her lifetime than the average person - and I think I've mentioned how extensive mine has been already
The typical patient being diagnosed is a woman in her 40s, but it can be found in both genders at any age (I was 15 when I was diagnosed)
On average, it takes 6.5 years to get a diagnosis of Sjogren's Syndrome
Sjogren's patients often experience 'flares' and 'brain fog', similar to many other diseases including Fibromyalgia, Lupus, MS, RA, and many more
A patient may have Primary Sjogrens (it is their only diagnosis) or Secondary Sjogren's (they have a comorbid conditions, such as those listed above)
There are limited treatment options, which focus on minimizing symptoms and slowing disease progression
There is no cure.

There are 3 things you can do today to spread awareness, encourage potential patients to seek diagnosis, and support research:
1. Learn something (www.sjogrens.org)
2. Teach someone (www.defythedry.com)
3. Sign up for Sips! (http://www.facebook.com/event.php?eid=183619591699575)

Thank you for reading this today and sharing it with everyone you know. There may be 4 million Americans living with Sjogren's Syndrome - but most are not diagnosed! They may not know there are resources to help them with their challenges - you may be the key to a better life for them. Have a great weekend, and stay hydrated!

May I See Your Resume, Doctor?

2011-07-15T12:00:00.000-04:00

My husband says I should wear a sign that says advocate...with a pair of devil horns. It seems I always have the opposing viewpoint in a discussion...I say it's because I think all the way around a scenario. Tomayto, tomahto.

Regardless, I do ultimately tend to speak for the unpopular opinion...and I'm about to do it again.

Image found here...and I think you can buy it, too!

I am a HUGE supporter of the educated patient. I very firmly believe that the best thing a patient can do for him or herself and their doctor is to learn about their condition(s), risks, treatments, etc. And, I hear stories every single day (literally) about doctors who obviously didn't know their head from a hole in the ground based on the absurd, uneducated, or downright negligent things they've said.

However.
It needs to be said: we need to trust our doctors. They know things we don't.

Hang on, put down your pitchforks and hold back the angry mob, hear me out (ha, haha, a devil joke, get it? I don't think I can write a post without a pun these days).

Image found here. This one's not for sale.

I know the right (nay, need) for a patient to think independently and not blindly rely on the initials MD or DO to lead them is a huge rallying point, and for good reason. But ultimately, we see doctors for guidance - or at least we should. I don't go to doctors just because they have the legal right to order my prescriptions, I see them because I need someone more knowledgeable than me to take responsibility for keeping me in tact.

We've all encountered the doctors we're pretty sure graduated medical school by a fluke in the system which gave everyone passing grades; the ones who didn't believe our symptoms were real; the ones who told us things like "live with it", "it's part of aging", or "there's nothing to be done". But I suspect the solution isn't to write off every doctor as a hack.

Instead of resigning ourselves to ignorant doctors and taking the responsibility for everything on ourselves, maybe we should learn how to recognize a good doctor from a bad one!

My rheumatologist (who I consider to be the captain of my health ship) has my trust. There are certain things I believe just because she's told me so - but boy did it take a lot for me to trust her that much. I can't research everything afterall. Since I've found someone I'm that comfortable relying on, I thought I'd share some of the ways I go about finding, evaluating, and staying with a good doctor.

Finding a GOOD DOCTOR:

1. Get referrals - but dig deeper.

Referrals are great. I'd MUCH rather spend my limited time & money seeing someone that has been recommended to me than a complete shot-in-the-dark stranger. But just because someone does (or doesn't) like a doctor doesn't mean you're going to feel the same way. Getting a name is great...but ask some follow up questions: why does your friend like this doctor? What does this doctor do for them that others don't? Are there any drawbacks or negatives to this doctor that they choose to accept in order to get the positives? This will help you consider if this doctor will work for YOU and YOUR life. The same goes for online rating & review sites.

2. Sometimes those who CAN do, teach.

The first places I turn when I need a new doctor are my local teaching hospitals. While not a guarantee, I find many doctors associated with these hospitals have a few great traits: they tend to be better at explaining things, they're more receptive to self-educated patients, and they tend to have knowledge of the most recent developments (heck, sometimes they're even part of them)! Living near Philly, I know I have a surplus of these institutions at my disposal, but sometimes doctors at these facilities will also have locations that may be closer to you.

Evaluating a GOOD DOCTOR:

3. Get answers.

Please note - I didn't say "ask questions", I said "get answers". We all ask questions, but we don't all get answers to them from our medical team. One of my favorite examples of what I think a good doctor should be able to do is answer "how will this medication help me?". Things that do NOT count as answers:

*It will make you feel better (this is arguably the worst answer)

*It reduces inflamation (sounds good...but you end up with no more information or understanding than you started with)

*The hydrosomethingdohicky combines with the gobbletygook via the Hokiepokie Reaction thereby minimizing the inflamatory reaction you're experiencing (this person is either being condescending because you dared to question them, or may just be completely out of touch with reality - neither is good)

An example of a good answer might be: "This medicine combines with a chemical already in your system, which will interfere with the Hokiepokie Reaction that causes you to experience inflamation. By interupting the Reaction, you will have less inflamation overall". This answer isn't attempting to talk over your head in 'doctorese', but actually gives you information on the mechanism at play. Think of it this way, if you can't explain to your friend why you're taking something and how it actually helps, your doctor isn't 'answering' your questions. (BUT - to be fair, you may never have really asked or driven at a better answer. Give your doctor a fair chance by making sure you're asking questions and letting them know if you still don't understand.)

4. R-E-S-P-E-C-T.

A doctor, like anyone else you turn to for guidance in your life, should help you be realistic but still true to your priorities. For people with many chronic conditions, this can be trickier than it seems. One way I knew my rheumie was a winner was during a visit while I was in college - we were discussing my weight and certain musculoskeletal symptoms, and instead of telling me to find a way to work out she said "well I know your schedule isn't going to change until school's over so let's figure out what to do now". I think I actually did a double-take. All other doctors (before and since) basically look over their glasses and give me that "now child, we know you're just being lazy" stare while telling me to find a way to work out somehow. This doctor acknowledged the priorities I had in my life at that point (certain organizations, classes, part-time job, etc) and wanted to work within that, at least for a while. Now that my schedule is indicative of a more lasting lifestyle, she does encourage some changes when necessary - trying to find more downtime (ha, haha, hahahahaha), actually finding ways to incorporate some reasonable amounts of exercise, and so on - but she knows if her advice doesn't jive with my life, I won't listen to it anyway. One question she asks at every single visit is how my marriage & husband are doing...now that's a doctor who's concerned with my LIFE, not just my Sjogren's.

Staying with a GOOD DOCTOR:

5. Determining your limits.

There's a world reknowned Sjogren's specialist in my backyard here in Philly - I was actually a patient for a brief time. Unfortunately, there's a group of us who used to see this doctor but eventually left the practice because of the office staff. My experience included weeks of unanswered messages, undelivered test results, even unfilled prescription requests, and I've been told I'm in good company. It wasn't the doctor, but the front line of people a patient encounters are that inept, and it hurts the practice. My current doctor's staff isn't perfect, I had some issues again with slow response times, messages that weren't passed on, and scheduling issues. I also go to every appointment prepared to wait an hour or more for my visit if I'm not first that day. So why am I willing to deal with staff problems and long wait times, but I left the previous doctor for similar reasons? I have determined my limits and what is most valuable to me.

Personally, I value my doctor's care enough to cope with the frustrations I encounter. I'm willing to wait for my appointment well past my scheduled time because I know I'll get a thorough exam and all my questions answered when it's my turn in the room. The communication problems aren't as bad as at the former doctor's office, and I know that I can email my doctor directly if I have to and that once she gets my message she'll give it the appropriate attention. While I'd prefer a perfect office to go with my perfect doctor, I'm ok with this situation. Just like I expect my doctor to respect my priorities and lifestyle, I have to accept not everything in her office will be ideal.

It's funny - to find, evaluate, and accept a Good Doctor, we have to remember to view them as humans with imperfections. Just like other relationships in our lives, the one we have with our doctors should be filled with acceptance and respect. This way, we all come out ahead.

So What if I Wear My Sunglasses at Night?

2011-07-10T15:00:00.001-04:00

For the month of July, WEGO Health is focusing on empowerment. To this end, they have suggested a few blogging prompts, one of which really caught my fancy. #4 on their list of ideas is about having convictions. That's funny, I have a list of quotes I love, and one of the first on it was "It is a blessed thing that in every age someone has had enough individuality and courage to stand by his own convictions" (Robert Ingersoll). So, I guess I'd better list 5 things I "will not apologize for". You don't have to agree with me, but instead of arguing, let's discuss...and maybe you'll post about YOUR convictions too! Let me know where they are and I'll come read them!

I will not apologize for...

1. 'Wearing my sunglasses at night', or Expecting the support I deserve:  There are specific sources from which I expect support - family, close friends, & my employer for example.  What exactly I expect various as appropriate for the source - from my employer, I expect respect & reasonable flexibility, whereas from my family I expect not to be mocked and that they will not look on me as lazy. (That's where the sunglasses comes from - I get a comment from a family member or two when I wear them after they think it's 'dark enough'. It really grinds my gears, especially because it has NO impact on them whatsoever.) I think I deserve these things because of how I approach these sources - I am respectful & considerate of my family/friends & their needs, and in dealing with my employer I am conscientious of their concerns & need to be profitable & fair to all employees. In both cases, I strive to add value every chance I get. I don’t expect things without working for them, but since I work hard, I have earned & deserve them.

2. Being afraid of things about my future:  I have some real, founded concerns about my future - but that doesn't mean anyone should roll their eyes at me (which they do). For example, it bothers me to know that I may wind up in a wheelchair, have increased chances of problems with pregnancy & motherhood, or that with Sjogren's I am 44 times more likely to develop Lymphoma. There is both statistical, scientific support for these concerns as well as 'experiential' support in the experiences of people I know. They are real risks. I have proven myself to be on the whole optimistic & level headed, but find I'm made out to be a hypochondriac, catastrophosizer, and attention-seeker who blows things out of proportion.  I’m as entitled as anyone else to my fears. I don’t act like one will definitely occur, and like everyone else I hope I’ll have the happiest life possible - but I know they’re real, and I don't like them. Instead of being mocked or marginalized for expressing them, I believe the listener should try supporting me and reminding me that they will continue to should I ever run into these problems.

3. Going public about my conditions:  Disclosing your conditions or challenges is never an easy decision, and doing so on an international stage for all the world (and your current & future employers) to see simply isn't for everyone. I respect the decision many people make not to disclose, even if I sometimes disagree with them, as their choice based on valid risks. But as I see it, someone has to do it. The reason so many risks (real & perceived) exist is because the misconceptions & fears ignorance of the facts causes in society - the public needs to know, which means someone has to tell them. To end legal segregation, someone had to face their fears and make a public spectacle; the principle here is no different. And it's not for everybody - but we each have a job we need to do in this world and for some of us, it's public health activism. Besides, as I posted before, “I gotta be me”.

4. Being frustrated by the general impression out there that Lupus is ‘worse than’ SjS or other conditions:  Please listen carefully - I'm glad for increased awareness of autoimmune diseases, grateful for every battle I don’t have to fight, and never begrudge those with Lupus (and/or other things) any support they get. I know Lupus is still vastly under-recognized & misunderstood. But it’s not necessarily “worse”.  My own mother (who is normally an example of the self-educated patient) still comments that she hopes at least I always have 'just' Sjogren's and that it never 'develops into' Lupus (insert frustrated hands-in-the-air here); my mother-in-law can't seem to remember that they are different conditions; even someone on a Facebook group yesterday posted that they were diagnosed with SjS and RA, but 'at least not Lupus'. It blows my mind...personally (and this is just my own impression from patients I've met), I'd be far more upset to be diagnosed with RA than Lupus, but that's besides the point. They are each different conditions, and which is "worse" depends on who you are and how your case progresses. Take those three, SjS, Lupus, and RA - a progressed case of SjS can be WAY worse than a mild case of Lupus; RA in one patient may be controllable whereas Lupus in another may run amok; and even two people with the same condition will have entirely different experiences. It’s a case-by-case deal. I don't want a diagnosis of Lupus, nor one of RA, but my concerns about the dry mouth and problems with my shoulder are at about the same level.

5. My priorities:  Focus here on the first word - MY priorities. MINE. ME ME ME. Obviously I'm not being self-centered, but I am responsible for myself so I have to make my own decisions. They affect ME. My priorities don't have to be anyone else's (well obviously Shawn and I have to align ours but let's not nit-pick this one), and therefore they won’t always make sense to others. They don't have to. At different times I've had different priorities – in college it was one organization over another, after graduation it was work over social, at a higher long-term level it's family over work. For a while the CPA exam had to wait while I stuck it out trying to adjust medically to a new job, with Prednisone & other challenges; I knew I couldn’t do that AND handle the stress of this high-pressure exam process. Even choosing specific causes to support has to be prioritized, and which I choose won't be the same others might choose…I work on SjS projects, choose to participate in one event over another, etc. I welcome questions about why I make these choices, why something is a priority for me, or discussions about why some people make a different decision - but not insinuations that my priorities are 'wrong'. Frankly, they're just not something others get to judge.

I guess this entry seems a little argumentative...and while that's not my intention, I suppose it is a reality of life. Having convictions means standing by them when challenged. The good news is, I will also support you as you stand by yours. I want to thank WEGO for encouraging me to explore this head-on, and extra thanks to you for hearing me out:)

Unlikely Insight

2011-07-08T23:32:00.001-04:00

Other than the topic of socialized healthcare, political issues don't often enter into my world as a health activist. Somehow, the greater life problems of holding up as a patient, communicating with the rest of the world, and needing each other to buoy ourselves seem blind to bipartisanship (gee, imagine that). But as we know, there's an exception for every rule.

It would seem the Chairman of the Federal Reserve also crosses party lines. Nominated for a second term by President Obama, Ben Bernanke was originally appointed by President G.W. Bush in 2006. The thought crossed my mind, "how could this man be supported by two of the most dynamically disparate leaders in this country's collective memory? AND, having assumed his role mere months before a global financial disaster, how did he hang onto his job into a second term?". Circumstances suggest perhaps he knows something the rest of us don't...or maybe, that he knows exactly what the rest of us do, he just articulates it better.

And with one such articulation, Ben B earned a special place in my heart. When he was appointed, I was an eager accounting student at Villanova trying to pretend to care about economics (I've since given up on pretending). But Benny tossed out a gem that I've loved ever since - "Creating monetary policy is like driving a car looking only into the rearview mirror". True, to the point, relatable - I love it.

"That's lovely...but WHY on earth are you giving us a lesson on Bernanke? Why would we care?" That's right, I heard you. I can read your mind!
Ok not really, but I can imagine. I have a good answer, I swear.

Benny's message was that his job requires him to make decisions - important ones, that affect all of us whether we realize it or not - without being able to look into the future. His only resource is history, and honestly even though "history repeats itself", it doesn't do it on a nice predictable basis.

Another of my favorite public figures conveyed the same thought, but perhaps on a better man-on-the-street level: "Ain't no need to watch where I'm goin'; just need to know where I've been" - Mater. Yes, as in the tow truck Mater from the movie Cars. Pixar's all about life lessons, kids, pay attention;)

Oh, and right about now that "man on the street" pun is clicking. Go ahead, giggle (or groan).

Anyway - the point is Mater drives backwards (at high speeds and making crazy sharp turns that terrify Lightening McQueen) with confidence, because he knows where he's been. That only works because he knows the territory so well; he's driven down the same road so many times, he knows what's coming based on what he's passed. Bernanke doesn't have the luxury of a consistent road, so he can only use what's passed as a clue, not a road marker (good God I love these car puns).

I contend that we, chronic patients, are somewhere between Bernanke and Mater.

Photos found here and here.

Like Bernanke, we are faced with choices - of all magnitudes: if I shower in the morning will I have the energy to get dressed; should I park near the door now because when I leave I'll be exhausted; can I afford a cut in hours to accomodate my medical needs - and have no reliable way to predict the future. Sometimes I feel like my motto is "Plan For Everything - Stick To Nothing" because I have to plan far in advance to 'budget' my energies, but then be completely flexible to an unforeseen drain on them.

But like Mater, many of us have been down certain paths many times before. It took a while, but I've learned some symptom patterns that indicate what's to come for me. For instance, I have a very specific sensation in my throat and chest which means bronchitis isn't far behind. Or, I know 15 minutes of sun exposure without sunscreen (& preferably a hat) will mean up to 36 hours of full-body aches, brain fog, and other types of fall-out - on average. And yet, I wouldn't dare try to speed willy-nilly down any projected road, because even though I had an experience a dozen times, it could definitely take an unexpected detour the next time.

And so, we land somewhere in the middle. Between "I have no clue" and "look Ma, no peeking", you'll find a swarm of chronic patients. We live our lives tentatively, trying to predict and plan but aware that every experience will have it's own twist. It goes all directions; sometimes instead of my expected Bronchitis I end up with a more mild infection that clears more quickly, but then sometimes a tried-and-true remedy fails to provide relief. It's all part of the crap shoot. But ya know, everyone's life is a crap shoot, chronic challenge or not. No one knows that tomorrow will be what they expected. We may have less predictability in some areas of our lives, but on the whole I'm not sure we have so much more to deal with but that we have to deal with things more consistently. Which is pretty ironic, really. I guess God does have a sense of humor...we'd better start laughing along if we're going to enjoy this ride:)
Did you catch it? One last car/road/ride joke? Aw come on, it wasn't THAT bad.....

Take Me Out to the Ball Game, Take Me Out to the Crowd...Buy Me Some Water and a Great Big Hat...

2011-07-04T22:26:00.000-04:00

Shawn and I dedicated Saturday as our day to ourselves for this holiday weekend. Our requirements for what to do were simple - inexpensive and outside. Turns out one of the Phillies minor league teams, the Reading Phillies, had a home game that evening with a fireworks show afterward. Perfect!

Being a blog about living with chronic illnesses, of course, I have to share the Sjoggie twists on the day's festivities. I want to say upfront, I'm actually not bothered by any of them. Honestly, they weren't problems, and for the most part are things 'average' people should be doing too. Some even strike me as funny. Not every accommodation has to be a big deal, people:)

Reading is an hour and half from us, give or take, which meant a mini road trip. Fortunately in my car that isn't a problem, I can adjust the tilt of the actual seat (like, the part you put your butt on) so it doesn't hurt my back. I also wanted to take Frankie (my Sonata...get it? Frank? Sonata? Yeah yeah no one else thinks it's funny either) out on the highway, as it's been a while. At the stadium I noticed something interesting - they had a LOT of handicapped spots. Like, a couple dozen or so, at least that I saw on one side of the building. Maybe people with disabilities like to come to the small stadium or something.

We got there pretty early and the sun was pretty intense, so being a good little Sjoggie I put on my sunscreen. I used to skip sunscreen, complaining that it took too long to apply, left my hands slippery, etc, but a few years ago I finally realized that was silly. It only takes a moment to apply, my hands are only slippery for a minute, and not being sick later is way more valuable.

Even with sunscreen and my hat (yes, risking hat hair), it was a little too much time in direct sun, so we perused team photos & plaques under one of the seat sections, then returned to our sunny seats for the start of the game. After a little while Shawn went for another round of drinks, and brought me back a giant bottle of water. He said we were in the sun and I needed it; he's a good boy. I actually drank it all...I was a good girl:)

Naturally, the stadium had those giant lights for keeping things just as bright after the sun set, so I had my sunglasses on the whole time. However, they turned the lights off for the fireworks so I took off the glasses...then put them back on. My eyes have been even more sensitive and painful than usual for the past few days, and I actually couldn't look at the fireworks without them! For some reason, this struck me as pretty funny. I have to think if anyone had noticed me wearing my sunglasses at 10pm in a darkened stadium they would have been very confused. Shawn looked at me at the end of the show and started laughing. Hey, a Sjoggie's gotta do what a Sjoggie's gotta do!

After the game we were both craving ice cream, so we decided to stop at a diner. By then my ever-present cheese + salt craving set in so we shared a cheese quesedilla, then a banana split. I don't know what came over us but we powered through it in no time - we were seated, ordered, ate everything, paid, and were out in about half an hour. You can see the destruction of our sundae below.

Happy Independence Day, everybody, I hope you had as much fun LIVING with your chronic challenges as I did. We've gotta grab a few laughs whenever we can, ladies and gents, and I hope you yucked it up!

Our beautiful banana split:

The aftermath, about 10 minutes later:

Guest Post: Komen's Wild Ride

2011-06-10T16:08:00.000-04:00

If there's one thing I appreciate in a blogger, it's a stand-out voice. There are a few qualities that I think make an excellent health activism blogger: 1. Passion - kind of obvious, but never to be underestimated! 2. Strong - this is also obvious, though perhaps harder to qualify...strength could be through how the writer 'speaks' or by virtue of what he/she lives. 3. Balanced - I think this can be the hardest to do. I may like a number of bloggers, but the ones I keep coming back to read strike a balance between ups and downs. Writers who only cover problems, pitfalls, and setback; who only discuss what's wrong with society and why life with their condition sucks wear me out. Naturally those who are rainbows & glitter are a bit easier on the spirit, but eventually that just doesn't feel true-to-life.

Today's guest blogger really does it all...and usually more than once. Alicia Staley is a 3-time cancer survivor (Hodgkin's in ther 20's, then 2 bouts of breast cancer), engineer, and founder of The Staley Foundation...not to mention activist extrordinaire (you can read her blog here). Having interacted with Alicia on Facebook, Twitter, and WEGO Health, I even had the chance to meet her when we were on a panel together (with Amy Gurowitz) for the Social Media & Health Pharma conference.

Those of you who follow me on Facebook or Twitter may have picked up on my ambivilance toward Komen for the Cure recently. But of all the articles & pieces I've posted about, few really hit the mark so well as the voice Alicia used in her post on WEGO today. Alicia wrote basically an open letter to Komen, calling them out on their behavior, pointing to the biggest problems, and issuing one last call for Komen to mend their ways. No one could say it quite like Alicia.

Dear Susan G. Komen for the Cure:

Stop. Just stop. I've reached the point where I'm embarrassed by you and all your branding efforts for the cure. I see tons of pink ribbons, plastered on everything from shampoo to lawn mowers and cat litter. I'm beyond aware. I'm frustrated. I can no longer justify your breast cancer awareness campaigns to my friends that want to know why there's no cure. I've received more emails in the past week over at Awesome Cancer Survivor expressing exasperation at the breast cancer community than I care to count. As a breast cancer survivor, I shouldn't have to justify your behaviors.

When you launched your partnership with Kentucky Fried Chicken (aka "Buckets for the Cure"), I excused your lapse of judgment. I assumed it was a temporary slip, and you'd eventually focus your energies back on partnerships and alliances that aligned more closely with your stated goal of "For the Cure." You trumpeted the partnership, declaring KFC would make the largest one time donation of an estimated $8 million to Komen. The ultimate goal of the $8 million donation never materialized. According to your own reports, you only took in $4.2 million. Not pocket change by any stretch of the imagination, but only about half of what you were looking to grab. You are the self-proclaimed leader of the breast cancer community. Where is your leadership?

When you went after the little guys, suing everyone and anything using the phrase "for the cure", I lost all respect for you. You attacked the very people that are desperately seeking a cure and trying to find some solace in the face of this devastating disease. Instead of reaching out your hand to help lift these groups up, you smacked them down with frivolous lawsuits. Exactly how is "Grandmas for the Cure" hurting your multi-million dollar campaign and branding efforts? These small charities, working for a cure, picked up the baton you dropped long ago.  You are the self-proclaimed leader of the breast cancer community. Where is your leadership? Where is your compassion?

When you launched a perfume, I realized your days as a leading breast cancer charity were dwindling. A perfume named "Promise Me?" Why? Do you know that chemical sensitivities are heightened while undergoing chemotherapy?  To this day, almost 18 years after my last chemo, I still have trouble with certain smells and tastes. I can't imagine the thought of wearing a perfume that reminds me, everyday, of the lack of progress made in the fight against breast cancer. Were you expecting every woman fighting breast cancer to spritz on some "Promise Me" before heading out to the cancer center? You are the self-proclaimed leader of the breast cancer community. Where is your leadership? Where is your compassion? Where is your creativity?

And now this: Roller Coasters for the Cure. Did someone run this one by corporate? A Komen affiliate has co-opted the pink ribbon to plaster on a roller coaster ride. According to the press release: "Wild Waves challenges all U.S. theme parks to paint their Skycoasters pink to raise awareness for breast cancer." Save the paint. Remind me again - for what exactly are you raising awareness? We're all aware. It's time to move beyond awareness. You are the self-proclaimed leader of the breast cancer community. Where is your leadership? Where is your compassion? Where is your creativity? Where is your self-respect?

The backlash is here. The Komen Bandits are organizing. Count me in as a bandit. I'll carry the torch for Joan, Jeannie, Susan, Martha, Mary, and Lisa. These women were dear friends that died from metastatic breast cancer. I'm asking you to take a leadership role in addressing the lack of progress made for those facing the metastatic aspects of this disease. The once mighty Pink Ribbon, used all these years to herald the importance of breast cancer awareness, is quickly becoming the poster child for cause marketing overload. Don't make this your legacy and drag the rest of the breast cancer community down with you.

You've done a great job of making us all aware of breast cancer.  Please take those next steps to help those that continue to suffer. Leaders don't rest on their laurels. They keep moving, they keep innovating. They don't go back and rehash the same products and promotions over and over again.  We get it: You could sell a pink ribbon popsicle to a woman in white gloves. But, please know, your days of King of the Mountain won't last long if you don't address the groundswell of criticism directed at you.  Wake up, the bandits are coming. And we're not happy.

Promise me that metastatic disease will become a priority for your organization.
Promise me that you'll visit the nearest cancer center and sit with those women going through treatment right now. It's not a pretty sight. Frustration is alive and well there, if not much anything else.
Promise me that you'll remember why you started this fight in the first place.

Promise me that you'll take these next steps or get out of the way.

Speaking For Myself ... Whoever That May Be

2011-06-06T19:44:00.002-04:00

Photo found here.

I am not my illness. I am a wife, a daughter, & a granddaughter; an auditor, a leader, & an activist; a lector, an extraordinary minister of Holy Communion, & a youth minister. I live to laugh, cry at the drop of a hat, and talk to my pug as though she were human. I love to buy shoes, am fascinated by tiaras, and think it’s fun to impress with acts of physical strength. I plan to be a mother, a community leader, & to make a difference in this world.

I am not my illness. But neither am I the person I was before diagnosis. I still love shoes – but the ones I choose accommodate my tendon and joint problems. The strength I would show off is gone – now even washing dishes or carrying bags is a problem. My illnesses shape my physical self, as well as my goals in life because of what I go through. I was a leader as far back as I can remember, but now I also lead other patients and disability activism groups. I still plan to be a mother, community leader, & make a difference.

The affirmations we hear in our communities are legitimate, but I have concerns about their accuracy. The two I hear most are "I am not my illness" and "my illness does not define me", and they evoke an emotional response for me. I am only speaking for myself - I can fathom many reasons why (and how) both statements may be spot-on for a lot of people. But while I believe I am not my illness...I do think my illness defines me, or at least many things about me. And that that's ok.

I am not my illness, but you must meet Sjogren's to have met me.
For one thing, you simply cannot talk to me for more than a few minutes without me bringing it up. So by default, you will meet it - I will introduce you.
Stay by me a little longer, and you'll learn about its personality - when it wakes up on the wrong side of the bed, I have trouble moving. When it has a mood swing, I go from all-in to last-leg. When its feeling benevolent, I get in a long walk.
Then, if you're really loyal / curious / masochistic, you can stick around through the flares and really get up close & personal. That's when you can make friends with greasy hair & all-day pajamas because I can't handle the exertion to take a shower, or relieve Shawn of his usual duties as butler because I can't get up for a drink/snack/tissue/medicine/ToSaveMyLife.
And Sjogren's is just one member of the entourage; "I'm freezing" and "I stood up and am going to pass out" are just a few calling cards left by Dysautonomia. "Please don't so much as put your finger on my shoulder" (Fibromyalgia) also likes to hang around.

I am not my illness, but I am at times exhausted, mentally foggy, achy, weak, light-headed, and yes even scared. Those aren't my "normal" traits. I prefer to over-schedule, be quick to process information, feel strength coursing through my body, horse around, and take on any challenge I can find. How could I say I am not defined by my illness? To me, that would be as silly as saying I'm not defined by my race, religion, or gender.

When we say "my illness does not define me", I wonder if what we really mean - if the message we're really trying to send ourselves - is "my illness does not confine me". That makes a lot of sense to me. One of the things I fear most in life is becoming confined, restricted, or controlled. Sitting in a doctor's office at 15 being told I shouldn't continue with the thing that gave me the greatest joy & pride to that point, Color Guard, that's exactly how I felt. Maybe because I was so young I hit a good mix of rebellious and malleable; I didn't passively accept anything, but also learned over the years to pick and choose my battles. That's a conversation for another day - but my point is I do not believe I am confined by my illness; I am still in charge, still do what I want, still control my future. I just do it acknowleding an influencing factor.

I am not my illness. I am not confined by my illness. Sometimes, I am defined by my illness. I am an interesting person, active in the world around me, & happy with most things about my life. I have my soul mate, a career I love, & a future to look forward to. I am a Sjoggie, and that's ok with me.

You Are Loved & Important in My World

2011-05-31T20:53:00.001-04:00

Photo found here.

Trying to maximize my membership in the amazing powerhouse that is WEGO Health, I posted a discussion last night about a particular struggle I'm having in my online communities. Responses are trickling in ... and the buzz around the issue promises many more in short order. This is certainly a question I think we'll be kicking around for some time.

In the meantime, however, I wanted to share with you this struggle the "health community leaders" took on, as well as how we are working to aleviate it. I want you to know how hard this group works for our communities, so you understand that we are not just writers here to impart our so-called "wisdom" and move on, but that we are listeners, carers, and supporters here for you. We love to share our experiences - but not as much as we love to INTERACT with you and try to be what you need us to be. My post is just one type of issue we work on, alongside topics such as providing real value to community members, writing purposeful posts, and finding out what concerns are top for our members. Many of you are leaders of your own communities, so you understand how much care we put into what we do.

Lately, I'm struggling with how to work with people who bring negativity into groups. This is a problem I've seen recur in many places, but I'll use my most recent example from Facebook. In one group, a person asked for some positive things any of us have gained from our experiences as chronic patients. I was so excited, I quickly jumped in with my two cents. A few others followed suit...then things took a turn. A few people shared their frustrations with the world (which are EXTREMELY valid, of course!), but in an overwhelmingly depressing way. They shared their decisions to simply "shut up", "keep it to themselves", and "stop bothering" everyone else.

To be totally honest, I am a bit unhappy with them for doing this in a conversation specifically asking for positives. If they really had nothing to add and wanted to share their frustrations, I think it would have been more appropriate to create a new chain. But, it wasn't my post and it's not my place to say, so I haven't.

What I did, however, was attempt to inject some positive back in. I wrote another comment, insisting that as real as their bad experiences have been, there are still a lot of people out there who do believe them, support them, and want to talk with them. I also discussed some options & resources out there for trying to communicate with friends, family, & doctors who are dismissive at best.

The reaction I got was someone telling me they were just trying to share their frustrations and "someday they'll learn to just shut up". Now I'M so frustrated. Another person has been commenting to this poster as well, suggesting that she sounds truly depressed and encouraging her to seek help for the depression. I added one more comment trying to convey that "shutting up" is exactly the opposite of what I'm encouraging. I said, tell me anything you want including these bad things, but at least feel a tiny bit better having done so knowing that I do believe, care, and am not the only one! This person has since posted again, sharing a very scary train of thought...but finally ending on the note that perhaps they will try to talk with us more in the group and see if it can help them. I have no idea where this will go.

I know from past experience that I may have completely missed the mark here. My best intentions may have annoyed her instead of encouraging her. I'm sorry if that's the case, though I can't really regret having said what I did because I thought it through to the best of my ability. But, it still left me confused, frustrated, and out of ideas. So I turned to my handy-dandy WEGO community, and posted a discussion on this topic. I must have hit a nerve because by the next morning there were Tweets and Facebook posts flying with links to the discussion. It makes sense - in that community of leaders, we must all run into this same problem. The impression I have is that it isn't an easy question for anyone - many people seem to be reading the discussion but are still considering their responses before posting. I'm really looking forward to what my peers will say.

In particular, I posed these questions:
Do you run into similar problems in your communities?
How do you balance wanting to encourage positive behaviors without isolating those who really need to vent?

The worst part of the conversation on Facebook was when the poster felt that I hoped they would "shut up". People need to vent, to be validated, to be heard. I believe we, as chronic patients, actually owe it to each other to hear the negatives when people need to release them. But we also deserve to enjoy ourselves and have a place to turn that provides a reprieve. Some of us even use a direct approach where we vocalize 'positives' and hope as much as we can. What are some ways to balance everyone's needs, and support those who are down without letting everyone wallow in despair?

As more replies are posted to my WEGO discussion, I'll try to incorporate them into my activism activities. I welcome your thoughts on the topic if you have any you wish to share. Above all, I hope you feel as loved and important and we hold you to be in our hearts. Everyone needs to know someone's looking out for their happiness:)

Photo found here.

"UII" Are A Family

2011-05-26T19:25:00.003-04:00

Miles 4 Mark Team at the 2010 Light the Night Walk

“UII” Can Spread Hope!

Cancers, especially blood cancers, are part of the family of ‘invisible illnesses’. Patients have few (if any) outward marks that indicate to others the life-threatening battle they are facing. That’s why it came as such a shock to my family when Mark, my husband’s step-father, was diagnosed with Lymphoma in 2008.

My Family's Story

Mark is a bear of a man; a true ‘gentle giant’. He’s soft-spoken; you can count the words he says during dinner on one hand, and he’s never riled by the boisterous family activity going on around him. He’s the type of guy you can’t imagine getting a splinter, let alone a disease that carries such a terrifying potential outcome.

The 16 months after his diagnosis went surprisingly quickly, as Mark began chemotherapy treatments and the agonizing waiting periods. Updates came at bi-weekly family dinners, with rarely any mention of side effects or the emotional strain this had to have caused. An unexpected update came the day my mother-in-law, Debbie, called to tell us Mark had been declared in complete remission. Debbie didn’t cry when she told us Mark was diagnosed, but she cried when she told us he was cured.

After this pivotal day, we found out how Mark & Debbie got through all the treatments, scares when his progress wasn’t as anticipated, untold side effects, and “wait & worry” times. They had the LLS. This organization provided my family with the resources, experience, and support they needed to maintain composure throughout the process. Debbie described how they pointed Mark in the right direction at various turning points. Then ‘Silent Mark’ started to talk.

Ever stoic, Mark never got into the details of what he went through with his treatments. Other than a buzzed haircut and light appetite at those dinners, I may never know what effects he experienced. But I know what the LLS means to him. I know his passion to support the organization that supported him has broken his shell, and is infectious to the rest of us. Mark joined the executive committee for the 2010 Light the Night walk, and our family fell in line behind him. We learned that innovations developed with funding from the LLS are often repurposed to battle other cancers. I knew that it was in part because of them that my own father had more reason to hope when he had his kidney cancer scare months later.

“UII” (Understanding Invisible Illnesses) aims to utilize the power of collective knowledge by pooling the information, resources, and experiences of many patients and caregivers with the purpose of benefiting others and ultimately spreading hope. The LLS epitomizes these goals. Throughout the year, we receive messages from the society sharing the hope-filled stories of previous patients and the relief felt by those who’ve been touched by the LLS’s programs. As I mentioned, the LLS funds research and innovations that are frequently recycled for other cancers & diseases. I’ve met with regional organizers and a national vice-president from the society, and can vouch for the enthusiasm with which their people approach their work. “UII” are proud to support the LLS by joining the walk and encouraging donations. They’ve given continued life, connectivity with other patients, renewed hope, and more to thousands of people already – the least we can do is give a little bit back.

As you know, my policy is to only actively fundraise among my community for 3 causes in the year which are especially close to me: Sjogren's (my condition), Autism (for my Aspie brother), and the LLS (for Mark). See my fundraising page here for information on the LLS or make a donation. Please use the share buttons below to post to Facebook, Twitter, or email your friends. And thank you, as always, for your support.

WEGO Webinar on IRL

2011-05-23T22:32:00.000-04:00

Photo found (and subsequently photoshopped) here.

Ok this one cracks me up just a little bit.

Sometimes I ask myself questions to assess what I'm doing with my time and how well I'm doing it. Lately, one of those questions has been "in relation to my role as a health activist among activists, what do I bring to the table? What value do I contribute? How am I unique in this community and how can I leverage that?". And no, I'm not being self-deprecating or modest; I KNOW that I add value, I'm just trying to focus in on how exactly I do that so I can do it better.

My age is sometimes an oomph factor...though less and less these days (darn kids speaking up and making me feel old). A pretty solid perspective I bring is that of a working professional & chronic patient. I like this role, it's become one of my favorite angles to portray. I think my story is inspiring - not even so much because of what I do to make this work, but because I can go out there and HONESTLY speak from the heart about cooperative employers and trying to make accommodations a viable solution. I know many people listening either truly can't carry the workload or will only be able to for a while longer, but it always helps to have a real basis for hope for the future.

In the past few months, it became obvious that the other reason people are interested in my work is because of my experience with IRL - In Real Life - activism. I think you all know some of my stories about presentations at Villanova (if not, go back a few posts), and of my new hat as a Sjogren's Awareness Ambassador (and on that note, remind me to tell you about the VERY cool things going on with that soon). I've even had the occasional friend ask for my thoughts on some IRL ideas of their own. I began IRL, then moved online, and LOVE to bring them together (my recent panel appearances related to social media speak to this idea).

So, how did WEGO Health, the trail blazers of all things activist-related, decide to make use of my experiences? By having me do a webinar on IRL activism. That's right, a WEB-BASED session on doing things in-person. I love it! How much more to the point can you get? We don't exist in isolation; we aren't just a Twitter persona OR a face behind a podium. That would be like saying we either have one symptom or another, only see one type of specialist, or even that we only enjoy either the ice cream or the cherry on top! Ridiculous!

I do Tweet, blog, Facebook, and play with a variety of online tools...but I also talk, educate, coordinate, and put myself on a stage, or in a classroom, or in an audit room where I simply won't stop "sharing". I get excited when I bring these worlds together; synergism is an awesome thing.

You knew, of course, that this post could only end one way - with a link to sign-up and a call to action: register now to attend the webinar! Once you spend the grand total of 20 seconds or so to register, you'll receive a link and instructions for logging in on Thursday (5/26) at 7:00PM ET You are able to submit specific questions ahead of time, as well as during the program via the webinar tool and even on Twitter using the designated hashtag!

WEGO Health Activist Speakers Bureau

2011-05-22T10:14:00.000-04:00

I just joined the WEGO Health Activist Speakers Bureau! As you know, I’ve already been able to do two live panel presentations with WEGO, along with three upcoming web/video based projects. So, when I received the email informing me about their new Health Activist Speakers Bureau, it seemed obvious I should formally sign up to keep these opportunities coming!

Signing up was easy and took just a couple minutes. I indicated a few areas/topics/conditions I feel qualified to speak about, my willingness to travel, and a comment about my favorite/most successful project to date. Voila! I’m in on the list!

I thought some of you might be interested in learning more about it as well – it’s a great way for Health Activists to share our stories, raise awareness and get the word out about the work we’re doing. Don’t worry if you don’t have a “health activist speaking” resume, you have experience living with your challenges, communicating them to others, and an interest in developing understanding across society. But, if you are interested but hesitant, feel free to ask me about my experiences presenting with WEGO. I’d be happy to discuss your concerns! And, submitting your application won’t obligate you to participate in any specific activity, so you can always decline if you are uncomfortable.

Members of the WEGO Health Activist Speakers Bureau receive exclusive invitations to present at conferences, speak to members of the media, and be featured on WEGO Health.

Interested in joining the WEGO Health Activist Speakers Bureau? Apply today! It only takes a few minutes and they’ll email you as soon as they have opportunities relevant to you and your interests.

Guest Post: A Very Special Note

2011-05-18T13:08:00.000-04:00

This guest post is courtesy of my brother, Jon Dorfman. I've mentioned him before, most notably in my post, My Oxymoronic Brother and for his participation on the II panel for the VU + UII project in February. Jon has Asperger's Syndrome (this makes him an 'Aspie').

Misdiagnosed as a toddler, he went through many rounds of added and revised diagnoses until he was finally matched up with this condition on the 'high functioning' end of the Autistic Spectrum at 8 or 9 years old. Fortunately, his theraputic early school environment had been right either way, and he had every support therapy/service our parents could arrange to help him actively learn things that are subconscious for us neurotypicals (NTs): how to communicate verbally, to relate to people around him, and other social skills needed to succeed. Some didn't work so well and there were P-L-E-N-T-Y of setbacks, but even if it felt like 10 steps backward, there was at least the eleventh step forward to hang onto.

In college, Jon became HIGHLY involved with the Kinney Center, acting as a summer camp counselor, school-year social skills instructor, and resident media darling. You can see just a few of his interviews (articles and videos) here: Kinney SCHOLARS Profile, Philadelphia Inquirer story, Twitter, his startup website, or his 2nd NBC interview. Google him if you want more, I'm tired.

Jon wrote the Facebook note recreated below immediately following his graduation this past Saturday from St. Joseph's University. It is addressed to his friends - friends he made in college and who filled a social void in his heart with amazing speed, affection, and compassion. Even though he (accidentally, I'm quite sure) left out his favorite sister, his note is a rare glimpse into the SOUL, the emotion, the heart, and the logic of an 'Aspie'. When something in it reads strangely, pause to understand that it is a unique expression of something we were told Jon would never be able to communicate.

Hear the 'voice' of Autism once the shackles are broken...or, once we've learned to put them aside.

A very special note to EVERYONE who helped me get through despite myself.

So, let's start out with a simple advertisement, shall we?

Fine Arts Major: 4 years.

College Education: $120,000.

Yelling at the Registrar staff every God-damned semester: 40 courses.

Increasing to anxiety levels untold of for centuries while waiting for grades: 124 credits.

Graduating 2nd out of 1,112 students despite all odds and predictions: PRICELESS.

I realize that I would not have made it this far without the help of several (teams of scores of you) people in my life to keep me going. I was never supposed to reach college, much less graduate from one. (The official Rub-it-in-the-doctor's-face Award goes to the doctor who thought I was mentally challenged based solely on the fact that HE did not realize Crayola had changed the name of a crayon from "flesh" to "peach" when I was two. Congratulations! You're a freaking moron!) But there were many people who never gave up on me, even when I wanted to.

I can still remember my anxiety spat with my parents that I felt that I couldn't go through with college right before the first day of Freshman year. They calmed me down and persisted that I could. I got to college, went on a couple of tirades, and landed in some hot water in the first semester. Rather than kicking me out all together, the University saw my potential before I even did and gave me a second chance to pull myself together. So, I did just that.

The second half of Freshman year was a depressing time for me. But those who mattered didn't mind, and those who minded ended up not mattering. They reinforced in me, the idea that I was never alone, despite my being single and never having gone on a date before. My friends actually cared about me, and that was empowering to me to say the least.

From September 2009 to October 2010, I suffered 13 months of a debilitating depression. Debilitating to the point that I needed daily reassurance that I was a good person, and that I had Goku-level amounts of potential. My friends are pretty much (in my opinion) the only reason I survived Junior year emotionally intact.

And now, I've completed my finest hour thus far. I have graduated 2nd out of 1,112 people in the Saint Joseph's University Class of 2011 (that is 2nd by virtue of my placement in the line, not by GPA). I defeated all of the odds that my doctors placed on me when I was two-years-old. Much more to the point, the people who minded and didn't matter... they were at least a year ahead of me during my Freshman year. I ended up graduating before a vast majority of them. (One person comes to mind, who is entering his 8th year Undergrad at SJU next year [with no known or aparent reason]. His parents must be so proud...) They claimed many battles over my peace of mind, but Karmic Retribution helped me win the war.

Much more to the point even than that, I reiterate that I could not have done it all by myself. I have the one thing those people will never have, even if they ever get their college degrees: TRUE FRIENDSHIP.

One of my best friends greeted me after graduation just to tell me that he was proud of me, and that I can do anything I set my mind on. Another of my best friends called me later in the evening from Harvard to tell me that she was equally as proud of me and that I "deserve everything good [I] get." Mind you, this was all the way from Harvard. I think I should be proud of her a little bit more, though...

So what did that advertisement in the beginning have to do with all this? Well, here's the last line of it that I intentionally left out until now:

There are some things money can buy, for everything else, there’s HOPE.

I overcame all adversity, shallow odds, and half-baked prognoses to prove that I am powerful. Not by my physical nature, but because of my emotional and mental nature. Yes, I am an Aspie, but this little Aspie has an army on his side willing to fight the good fight alongside him for better or for worse. And I could never be more grateful for that. Thank you. Thank you all. I love you all with every fiber of my being. Grad pics up soon. I promise.

May you all find peace with yourselves, within yourselves. And never stop believing!

Diagnosis Trail (Repost)

2011-05-16T21:30:00.000-04:00

I've been swamped this month - a week of out-of-town training, the Sjogren's Walkabout, my baby brother's graduation, and kicking off two engagements at work (one I'll be leading) only scratched the surface. I appologize for my absence.

Following some words of advice for when stuck in such a blogging dry spell, I revisited some of my original posts. Interesting, in rereading one about how I was first diagnosed with Sjogren's, I realized it would not only be convenient to repost it - it would be wise. I had few readers when I originally wrote this post nearly 2 years ago, and now with a more integrated audience across multiple social networks...well, I think it's time for a repost. Please check out my story - just one of the millions chronic patients could tell you - and remember that it is by sharing we make progress. By sharing our own stories and stories of our friends, we may spark the missing clue in someone's diagnosis puzzle!

My Diagnosis Trail (originally posted in September 2009, minor edits made for current info)
Everyone's diagnosis story is different. The average diagnosis time for my main condition (Sjogren's Syndrome...which is actually technically called Secondary Sjogren's Syndrome even though it's my 'primary' diagnosis because it occurred alongside other diagnoses) is 7 years and the typical patient getting diagnosed is a woman in her 40's. I was diagnosed at 15 which is very young, but that doesn't mean I was diagnosed quickly. (For reference, I am now 25.)

I can trace my symptoms back to 2 years old. At that age, I had so many chronic ear infections that they had to insert tubes to keep my ears draining. That alone is not so unusual for a toddler, but it was the first part of a loooong pattern. By 4 years old, I was experiencing intense leg pain, especially at night. The kind that kept me (and my parents) up overnight with my crying and thrashing. The pain wasn't just in my joints, but seemed to come from the center of my bones. There isn't much that can soothe that kind of pain, and at my age all they could give me medication-wise was Tylenol (I've never had much luck with Tylenol). My doctors finally did some imaging tests, but since they saw no breaks or tumors, they said I had "growing pains". These leg pains continued regularly ever since, though I now know the familiar onset symptoms and can intervene more effectively with ibuprofen.

By the time I reached school age, I was experiencing a regular cycle of infections throughout the year...respiratory infections including bronchitis, urinary tract infections, stomach bugs, and the eye problems started. Anyone familiar with Sjogren's knows the two most predominant symptoms are extreme dry eyes and dry mouth (but please don't assume that's all there is to this disease, I'll explain more later). My eyes were ALWAYS dry and gritty, I always thought there was something in my eye, and I produced a thick secretion. I constantly picked at and rubbed my eyes, which is something my classmates never understood but still remember to this day. Doctors gave me all kinds of drops and ointments, none of which made a dent into the discomfort. On top of all these things, I always felt sick in the morning when I got up for school. Many days, I wound up in the nurse's office with a stomach ache, and when I told her I did not eat breakfast (trying to eat in the morning itself made me nauseous), she decided I was trying to get out of class. I missed on average 20-30 days of class every year. My parents were my only believers, the teachers and administration tried to tell her I was a hypochondriac trying to get out of class...it was absurd! I LOVED school. I HATED missing time. Some days I still want to go back to my elementary school, find anyone who was working there when I attended, and hand them a list of my diagnoses and symptoms.

Then I hit high school. I had joined the color guard, which participated in band camp the two weeks prior to the beginning of the school year. We spent 8 hours each day for two weeks in the sun learning our show (with few water breaks or chances to reapply sunscreen). Once classes began, we rehearsed 3 hours Monday and Wednesday evenings, had football games on Friday nights, and spent 8-10 hours on Saturday rehearsing before going to our competition for the week (we finally got home around 1am most weeks). I had not spent much time in the sun growing up, but for my family that was normal. This was the first time I had gotten a real tan! It was also the most exercise I'd ever had (I played hockey in elementary school but other than that I was more of a book worm than an athlete). I had no way of knowing I had opened Pandora's box.

It is my personal opinion, based on research and experience, that the appearance of an autoimmune condition (of my diagnoses, Sjogren's, scleroderma, and possibly fibromyalgia are autoimmune conditions) is the result of a genetic predisposition and an environmental trigger. In another post I'll discuss my family history but for now suffice it to say we are RAMPANT with autoimmune disorders, and it turns out *tada!* the sun is my environmental trigger.

So to return to the color guard story, our season began with band camp in August and ended around Thanksgiving. At Christmas time that year (my freshman year of high school, 2000), my mom noticed a small bald spot near the back of my crown of my head. It was about the size of a pencil eraser. Since I had been pulling my hair back tight for guard, we figured I probably just needed to be careful and let it grow back, but we also kept an eye on it. By Easter time it was the size of a quarter and we started seeing dermatologists. The first one we went to looked at my from the doorway of the office and said "alopecia, nothing I can do" and walked away. Later, when I looked up 'alopecia', I found out that's really just a term for the symptom of hair loss, and has NOTHING to do with the cause. Obviously we went to another doctor. In the meantime, somehow we were directed to a rheumatologist (and I had begun having severe dehydration issues, serious enough for multiple emergency room visits and one overnight admission). That rheumatologist told me to insist that the next dermatologist do a biopsy of the area. At this point he was considering discoid lupus, along with other things. So, when I went to a new dermatologist who was convinced it was discoid lupus from a visual exam, I still asked her to do a biospy anyway. Good thing, the result was localized scleroderma.

Once we got the scleroderma diagnosis, everything sped up more. My rheumatologist was a doctor for adults, and though I was 15, he said he was not comfortable treating a pediatric patient. He helped direct me to a doctor at DuPont Hospital for Children, who happened to be world-renowned and a top doctor to boot. Once I got to DuPont, that doctor and his fellow (who would takeover as my rheumatologist when the original doctor finally retired) were a Godsend. They quickly came up with the Sjogren's diagnosis (and therefore, treatment plan), and over time pieced together many of the mystery symptoms I had been coping with.

I thought at first I'd have to give up everything I had just gained - I was told to stay out of the sun, use all kinds of sun protection, drink all the time to stay hydrated, and a million other things. When I joined the color guard (remember, the reason I had so much sun exposure in the first place), I became a new person in many ways. I had just started high school, found a niche (and one I was great at!), made a ton of new friends, looked better than ever...the list goes on. I saw it all slipping away - how could I be in color guard when I was supposed to stay out of the sun and drink water all the time (as I said, we had very limited water breaks)...oh and I forgot to mention that since the season extends into November, I had to battle the cold with my stiff arthritic joints, and especially with the Raynaud's diagnosis I was told to avoid this situation as well. It seemed that all doors that should have been opening were closing - travel plans, a social life, etc etc. However, my doctors were great. They listened to my fears and helped me through the adjustment period while also helping me figure out how to hang on to the things that were most important to me.

If you don't have chronic illnesses, please understand that this is only the story of how I got the first set of answers. After that year, I had a name (well, names) for my most pressing problems, but these conditions change. Over time, other diagnoses developed or came to light, and like most people I know in the II world, my diagnoses list has grown and probably will continue to do so. By definition, none of these chronic illnesses will ever go away, so I just have to keep adding. Conditions can mask or imitate each other, which adds to the confusion and evolving diagnoses list. However, getting through this stage was crucial. It was the point at which I was able to move toward control.

Who Cares About Sjogren's Syndrome?

2011-05-04T22:41:00.001-04:00

I try to be original in my posts. Who wants to read the same-old same-old, or worse, a copy cat? But, sometimes my fellow bloggers are just too clever and inspiring, and I have to consider trying out one of their techniques. Can you tell what fellow Sjoggie blogger inspired this post's scheme?

I have a little voice in my head. Well, actually, I sometimes have a few little voices in my head, but that's besides the point. These voices don't direct me, tell me what to do, or anything disconcerting like that. Rather, they represent my inner fears, concerns, or anticipated confrontations. While perhaps not always enjoyable, they do serve a purpose; it's through my head-voice debates that I often work out my own stance. Today, one little voice, let's call her Cynical Cindy (CC), really wants you to hear what she has to say:

Health Activist Hearing - Jenny Pettit of UII v. Cynical Cindy of Doom-n-Gloomsville City Council
Subject - Who Cares About Sjogren's Syndrome? May 4, 2011
Jenny: It's that time of year - it's Sjogren's Awareness Month!

CC: Well, actually, that was April, we're in May. What happened, drop the ball?

Jenny: No, not exactly. In April I did talk to a lot of people about Sjogren's, and worked hard to get my employer involved in the upcoming walkabout and build the biggest team. I'm just in time...because April may be SjS Awareness Month, but in the Philly area that culminates with the Sjogren's Walkabout, on May 7!

CC: Big deal, yet another walk, for a condition no one knows about nor can they pronounce, blah blah blah.

Jenny: It is a big deal. The biggest deal, actually, for the Sjogren's Syndrome Foundation - the Philly area walkabout is their biggest annual awareness-and-fund-raiser. And Sjogren's isn't so hard to pronounce ("SHOW-grins"); there are a lot of words people had trouble pronouncing at one point but are commonplace now.

CC: People may learn to pronounce it, but they still aren't going to care about a condition so few people have. Even doctors & nurses who've heard of it before you bring it up say "that's really rare".

Jenny: Ah, CC, you must not have heard the stats. Sjogren's is the second most common autoimmune disease. For comparison, there are approximately 400,000 MS cases, 1,500,000 Lupus cases, and 2,000,000 RA cases in the US. At about 4,000,000 Americans, there may be more Sjogren's cases than the other three combined!

CC: If there were 4 million people walking around the in the US with Sjogren's, we'd have heard of it before now!

Jenny: If there were 4 million DIAGNOSED patients, yes. But a significant number of that 4 million are undiagnosed. Sjogren's is poorly understood (if even known) among medical professionals, and the symptoms can be so varied a patient may not even think to mention, which makes it very difficult to even pursue the diagnosis. As it is, the average length of time from the onset of symptoms to diagnosis is 7 years. Think of how many patients may be in that pipeline!

CC: May 7 is a big day around here - weddings, Holy Communions, even early graduation parties. No one's going to come to a walk for some underdiagnosed oddball illness - it's not even sexy! They symptoms are dry eyes and dry mouth - anyone can have that after a good night of partying, they're not going to care about your pity fest.

Jenny: Oh CC, you need to visit the Wizard of Oz and ask for a heart yourself. So bitter!
But until then, I'll fill you in. Dry eyes and mouth are traditional hallmark symptoms of Sjogren's Syndrome - but they just scratch the surface. First of all, they can be so severe that patients have to continually monitor their eyes for scratches, lesions, and repetitive infections, and incur on average 50 times more dental work than a 'normal' person. Spicy or well-seasoned foods, sandwiches without mayo or another lubricant, and other common foods become extremely difficult to eat; voices become scratchy at all times; patients even have trouble speaking from the dryness. But, Sjogren's can also affect every system in the body - from neurologic effects to organ failure and more, any and every part of their body can become involved. Patients have ongoing symptoms including chronic widespread pain, extreme fatigue, and "mental fog", which impact every aspect of their lives! Early diagnosis and treatment plans are the ONLY way to slow the progression of the disease and preserve the best quality of life.

CC: Ok ok, so it's a serious condition - why would anyone want to deal with something so burdensome on such a great weather day (May 7 is supposed to be warm - but not hot - and dry with some sun)? Not gonna happen, my friend.

Jenny: Wrong again, CC. This year, the walkabout has a brand new location, at the Philadelphia Zoo! Walkers will get FREE entry for themselves and their entire families, and may even be eligible for free parking! The event will also host a health fair, facepainting & craft for kids, snacks, music, and more. The Sjogren's Walkabout is THE place to be!

CC: Well, Jenny, you seem to have all the answers, don't you. Well I have one more question - quick! Tell me where I can get more information about Sjogren's and sign up or make a donation for your walk? Ha! Bet you don't know that so quickly!

Jenny: This just isn't your day, CC. I can tell you! For more information about Sjogren's Syndrome, symptoms, and diagnosis, visit http://www.defythedry.com/. To sign up for the walkabout and/or make a donation (yes, there's still time), visit www.firstgiving.com/uii - full directions are available on the site.

CC: Blast! Foiled again. Well, Jenny, I guess you've won this battle. That new role as a Sjogren's Awareness Ambassador is going to fit you well. Congratulations and I hope you have a great walk...but don't be fooled, I'll be back! With enough persistence, Cynicism will win the day! Bwahahaha.

Jenny: (Knowingly shakes her head, while giving CC that bittersweet smile that parents give their children to say "silly girl, guess you have to learn the hard way", Jenny watches her defeated alter-ego fade out of existence. She'll be back, but Jenny will be prepared for the next round when it comes.)

Ruling - Activist: 1, Doom-n-Gloomsville: 0
America WILL Care About Sjogren's Syndrome!

Scary place inside my head, isn't it?! Sometimes I don't even want to hang out there. But, I hope you gained something from the hazardous trip:) Please check out the sites Jenny provides to CC, and if you're in the area, maybe I'll see you Saturday!

Disability Matters 2011 Conference

2011-04-28T23:27:00.001-04:00

Photo courtesy of and used with permission from Erin, my peer from one of our Ohio offices.
These are the KPMG employees from literally across the country, gathered at the Conference to receive our Employer of Choice Award!

On April 6-7, 2011, 16 organizations in a variety of industries from around the country were honored at the 5^th Annual Disability Matters Conference in San Jose, CA. The awards conference, run by Springboard Consulting, recognizes companies that help people with disabilities succeed through their efforts as employers and suppliers. Honorees are recognized in one of five categories: Workforce, Workplace, Marketplace, Small Business, and new this year, Employer of Choice.

KPMG has been recognized in the past in one of the four original categories; this year, the firm was told that our efforts go far beyond what the original categories encompass, and we would be recognized with Cisco Systems, Inc. as the first Employer of Choice honorees!

The conference consisted of many networking opportunities & panel presentations by the honorees in each category, creating a rare opportunity as each organization shared what they are doing as well as what roadblocks they have overcome along the way. Attendees were able to ask questions of each panel, effectively producing an array of ‘take-aways’ we can use in our own corporate community. I would have presumed it would be a feel-good day, celebrating all we're doing, but how much could one of us gain? Afterall, we were all honorees already...and KPMG was an Employer of Choice, of course. What could be new when this was a group of singing clergyman preaching to the choir?

Employment policies, top-down integration efforts, and radical accessible venues outside of the workplace, that's what's new!! Paint me with stripes and call me a tigerlily, I couldn't have been more visionless. It's hard to narrow it down because all 16 organizations impressed me, but here are some of my absolute favorites - watch out for these radical revolutionaries, people:

Cisco Systems, host to this year's event and the other Employer of Choice, took us on tours the afternoon we arrived. Visiting just a few stops of their 30+ building campus in San Jose, we encountered a receptionist in another building (via one large itneractive TV + webcam set-up) before heading off to learn more about just a few of the adaptive technology products they offer. "So you saw a videophone, big deal"...true, if that's all we saw. But actually, we learned how they dream up the new technology, how they incorporate real-life potential users to test their products, and how they are designed to fit into a lifestyle, not define it.
Autism is a hot topic these days, and as you all know by now my brother has Asperger's, so it's a topic that catches my attention. Growing up watching my dad and brother fight every time they went to the movies as he tried to deal with the overall darkness, bright flashing screen, blow-your-hair-back volume, and social standards about laughing, clapping, or singing along...well, it was exhausting! AMC Theaters paid attention to a mom whose son had the same challenges - and instituted Sensory Friendly Films! At these special airings (the same weekends as shows are available to neurotypicals, but at times when there are fewer crowds), kids - Autistic, neurotypical, or whatever - are encouraged to stand, dance, sing, shout, and participate in their movies...which, by the way, are shown at more tollerable volumes, with a little bit more lighting, and no trailers to side track attention!
Every kid has their favorite piece of equipment or game to play at a park. I was a see-saw fan myself, though in their absence my heart belongs to swings, whereas there were the hardcore jungle-gymnasts or the Emporers of Tag. But one family dreamed up a magical playworld I couldn't have fathomed, and which warms my heart. Morgan's Wonderland in Austin, TX is touted as the World's First Ultra Accessible Family Fun Park in acknowledgement of their simple but ingenious solutions to common problems. A borderless sandcircle replaces the barriered sandbox, admission is limited to a fraction of the potential capacity to minimize ride wait times, & world-premier 'off road' vehicles that allow people who use any mobility aide to join their family on a park-wide trail effectively remove the things that keep people of different abilities apart. Only one entrance & exit are utilized to control volume and security. But my ABSOLUTE favorite innovation? One that is so simple and would be so useful to every park go-er in the US...each family/group entering the park receives wristbands such as we know from water parks, but these have RFID tags! Tags are assigned to a family/group and are usable at stations throughout the park to locate other members of the group. This allows every visitor freedom to safely roam, and helps find members who may have wandered away from the crowd!

KPMG’s Disability Network sent representatives from offices around the country to take part in the conference, including yours truly. Each participant was asked to bring back action items to implement in their local office. Besides the amazing inspirations listed above, some of my favorite ideas for my office include ways to effectively distribute information to employees, accessibility considerations as we remodel in the coming years, and potential local office trainings. Now I just have to find time to work with office leadership and our chapter of the Disability Network to put key take-aways into practice.

Disability concerns are relevant to all employees in my firm, whether they consider themselves disabled or not. If they don’t have a challenge, I promise one of their coworkers does. Accommodations developed for one employee’s challenge often wind up being useful to other employees. And, as it was said at the conference, ‘this is a group anyone can find themselves a member of at any time’. It would only further our goal to be a true Employer of Choice for all employees to unite in support of these initiatives...and the same is true for employers, community groups, and even families around the world.

The 2012 Disability Matters Awards & Conference will be in my backyard next year, in Newark, NJ April 18-19. Not an American reader? How about Paris, France, for the Inaugural European Disability Matters Conference! No date has been determined yet, but details will be coming soon, I'm sure. No matter where you are, I suggest following Springboard's leader, Nadine Vogel, on Facebook or Twitter!

Who Says Seuss Has to be a Doctor?

2011-04-23T14:28:00.000-04:00

The original Seuss may have been known as 'Doctor', but I know a Sjoggie Seuss who was a nurse!

My favorite blogger, Julia, has written this PERFECT post as part of the April WEGO blogging challenge. You can see the original, and all of Julia's great posts, here.

On a bright spring morning -
a beautiful day -
Julia the sjoggie
went outside to play.

She rushed out the door
and didn't stop to think
that she should do a few things
that took just a wink.

She didn't wear her sunscreen.
She didn't wear her hat.
She didn't put in eye drops.
The next day she was lying flat.

Oh, poor me! she cried.
Whenever will I learn?
I'm so stinkin' tired!
And I've got a sunburn!

The moral, my sjoggies,
of the story is this:
Wear your hat and some sunscreen,
so your spring will be bliss.

Hm, Julia's message reminds me a lot of this post I wrote a couple years ago...maybe great minds think alike;)

What We Can Learn From Sammy Davis Jr.

2011-04-15T21:07:00.001-04:00

I recently found myself in a familiar situation, emailing with my team at nearly 11pm (yes, while I was on 'vacation'). Now, for the record, I had every right and option to not reply, without retribution. But, being the ~~overachiever~~ good auditor I am, I wanted to keep the process moving as it was about a question the client needed answered. In the process, I realized I had gotten a little "blurty"...you know, didn't really say anything 'wrong' but didn't necessarily weigh every word I wrote before sending an email. I knew it would be ok, but wasn't perhaps the behavior that would earn me any kudos.

I was ~~obsessing over~~ contemplating the emails I sent, but came to a (familiar, again) conclusion - I gotta be me. It's the same reason I disclose my medical situation. I've known for years my personality evokes a strong reaction in others - people either love me or hate me - and I think it's also due to this same irrepresible trait. I gotta be me. If someone can't (or won't) work with these aspects (my illnesses, my honesty, etc), the whole thing isn't going to work in the longrun anyway and I'd rather know up front. (Fortunately, so far KPMG and the important people there I work with can:)). I gotta be me...and I gotta be surrounded by people who are ok with that.

I found this version of Sammy singing this song, and love it - it's real and raw and gutteral. I love it:

Whether I'm right or whether I'm wrong
Whether I find a place in this world or never belong
I gotta be me, I've gotta be me
What else can I be but what I am

I want to live, not merely survive
And I won't give up this dream
Of life that keeps me alive
I gotta be me, I gotta be me
The dream that I see makes me what I am

That far-away prize, a world of success
Is waiting for me if I heed the call
I won't settle down, won't settle for less
As long as there's a chance that I can have it all

I'll go it alone, that's how it must be
I can't be right for somebody else
If I'm not right for me
I gotta be free, I've gotta be free
Daring to try, to do it or die
I've gotta be me

I'll go it alone, that's how it must be
I can't be right for somebody else
If I'm not right for me
I gotta be free, I just gotta be free
Daring to try, to do it or die
I gotta be me

Can I Be a Survivor?

2011-04-12T12:17:00.000-04:00

Image found here.

As you know, I have a team for the Philadelphia area Sjogren's Walkabout on May 7 (shameless promo: feel free to join or donate here). While I have a few things working for me - loyal & supportive family and close friends as well as the support of my employer - I am still struggling a bit to get people beyond that close family/friends circle to even hear me out. In my frustration, I thought about the various other causes I've seen promoted (and supported) on Facebook and other places...and noticed a trend. As might be expected, most of those causes were cancers - breast, blood, even uterine. What makes cancers more attention-worthy than Sjogren's (besides the fact no one can pronounce 'Sjogren's')? Well, there's the basic element that cancer is more well-known than an autoimmune disease (please note: I'm not suggesting the general public understands what it's like to be a cancer patient, but if you say "cancer" to someone they have an idea what's going on). But...I think there's something more. And that's when it dawned on me - most of the people I know participating in these events are (or are representing) a Survivor.

With some exceptions (such as my friend Bridget who has Fibromatosis - a chronic cancer which will continue to cause tumors throughout her life), most cancer patients are striving to defeat their illness. Once in remission, they live with the ongoing risk of another bout but also the hope that it may be over forever. We describe their experience as a "battle" with cancer, their role as a "fighter", and their remission as their "victory". Ultimately, those who "defeat" their cancer are "survivors".

I found this definition for 'survive' on Merriam-Webster's Medical Dictionary:
"to continue to exist or live after (survived the stroke)"

But what about me? I too hear the terms "battle" and "fighter"...but I cannot be "victorious". I can never be a "survivor" by this definition; my Sjogren's (and other diagnoses) are forever. I'm what I call an optimistic pragmatic - I hope for a cure in my lifetime, but I live according to reality as it stands today, and today I cannot expect to "defeat" my Sjogren's the way someone might "defeat" cancer.

Then I found this definition of a 'survivor' on Google's dictionary:

A person who survives, esp. a person remaining alive after an event in which others have died
The remainder of a group of people or things

So far, sounds a lot like Merriam-Webster's. But they listed one more:

3. A person who copes well with difficulties in their life

Well, now we might be onto something.

Before my mother or husband comment about the chronic whining, wimpering, and neediness that come with my chronic illnesses - I'm not an ideal patient. I complain from time to time, and certainly require far more assistance from those I live with than any of us would like. But that being said, from a big-picture perspective I think I'm doing pretty well so far with "coping well with difficulties in [my] life". I'm holding down a (very) demanding job, finding both purpose and support through my health activism, and even manage to stay involved with my parish & the youth group I run. I come home to a decent (if imperfect) apartment in a neighborhood I love, to my supportive husband and ever-loving puppy. When I survey my life on the whole, I am happy.

My medical prognosis is scary. Much of it is unpredictable, which means any long-term plans I make must come with contingencies. It's been a decade since my SjS diagnosis, and in that time I've begun to see the permanent damage it can cause. My impaired salivary glands cause extensive and ongoing dental issues along with the loss of my ability to sing, increasingly scratchy voice, and more and more difficulty speaking without sipping water. At church, I always try to receive both the host and the wine (the Body and Precious Blood) because without the wine I can't get the host down. Years of varying levels of tendon & joint inflamation have severely reduced some of my physical abilities including most common forms of exercise and make it difficult for me to wash dishes, carry boxes, or even hold files or binders at work. And of course, the list goes on from there.

But after this 1st decade I have new abilities, too. I can problem solve around almost any physical limitation. I no longer fear the dentist (how can you be afraid of a chair you've spent countless hours in), and I've learned to network like a pro (these networks are vital to a health activist, and especially one with an agenda). Some confusing life decisions have a new clarity since I know I may not be able to do it all. Even my work ethic improved, because I learned that a) doing my work now while I can may avoid a problem if I can't later, and b) stress is my ultimate enemy so anything I can make go away is worth doing. I'm through looking for silly shortcuts (like not putting on gloves before going outside), and I can easily tell who is my true friend (a person's reaction to my medical situation is an acid test - no one can 'fake' understanding or caring about it).

So, am I survivor? Are the things I've done so far enough to earn me that title (getting through high school and college, succeeding at my 1st job, the health activism projects I do, etc), or is it an honor reserved for those who have seen a challenge through to a stopping point? I'm not being funny - I would never want a recongition I didn't earn. But if it takes reaching an illness stopping point, I want "Loving daughter, wife, mother (I hope), and SURVIVOR" on my headstone - because there is no other finish line in a life with Sjogren's.

If I'm not a survivor...what am I? An ongoing fighter, a tireless warrior (hm, I almost typed 'worrier'...Freudian slip?)...perhaps, but these titles bring an air of exhaustion & imply that one day this 'fighter' may be cut down before the 'war' is won. I'd rather not see myself as someone who has spent my life fighting so that I may continue fighting until the day I die. I'm not a survivor, at least not as society would perceive it, and I don't want to be an eternal warrior. On my team page...how do I describe myself? Is there a word I can use to evoke the pride & purpose of the word "survivor" which is appropriate for my situation? And, will there be a day I can call myself a survivor? Or moreover...a day when society will care about my 'battle' even without that powerful word?

(Note: I respect & recognize those who are survivors, of cancer or any other battle. We have many survivors in my family, and I was just as relieved when they earned their 'titles' as everyone else. I don't begrudge them the support they get for even one moment; I want to know how to open people's eyes to the countless conditions we CAN'T defeat, for we need just as much support and possibly for a longer time.)

Join me for WEGO Health’s Webinar: Navigating Your Health Narrative!

2011-04-04T13:42:00.000-04:00

I just registered for WEGO Health’s exciting new webinar and I wanted to share with everyone. Here are the particulars:

What: Navigating Your Health Narrative Webinar

Who: Health Activist Panel with Lisa E, Erin B, Jenni P, and Amanda D

When: Thursday April 21^st 8pm EST (the webinar will last one hour)

Where: Sign up here and you’ll get all the details

The webinar is for anyone from seasoned bloggers to blog-readers who want to start their own blog. The webinar will cover the basics of blogging and include more advanced tips and tricks for promoting posts, managing your time, and establishing your blog “voice” and how to raise awareness about your condition through blogging.

By signing up you’ll also have a chance to ask specific questions for the Health Activist panel that will be answered during the live Q&A portion of the webinar. You’ll get access to the archived version of the webinar!

Thanks to WEGO for creating this ready-to-publish blog post so I can easily let you know about this event!

My Oxymoronic Brother: an Autism Activist

2011-04-01T12:32:00.000-04:00

April is Autism Awareness Month (it's also Sjogren's Syndrome Awareness Month - leave it to my family to overlap). I call my brother the Walking Oxymoron - he's an activist for Autism. Think about that...he's a spokesperson, a mouthpiece, an advocate, a health activist, for Autism, a condition which calls to mind images of non-verbal children trapped in their own world, unable to communicate with those around them. My family is nothing if not contrary, and my brother fits right in. My firm is observing Autism Awareness Month in a few ways, beginning with a special MSO offering titled "Autism - Transition to Adulthood". In their announcement today of this program, they asked anyone with a related story to send it in so they can share them through the month. I began to write an email just briefly outlining my brother's story, and found myself writing what must be one of my most emotional blog posts. I don't know if or what exactly I may still send in at work, but this story - not just of my brother's success so far, but of my family who was and is here through it all - belongs here. So this is not a guest post, but perhaps, a guest topic. For Autism Awareness Month and for my brother, I share this story.

My brother has Asperger's Syndrome. He presented with symptoms when he was 2 or 3 years old, and over the years he's had many misdiagnoses (such as ADD). Fortunately, the therapies he went through were the right ones regardless of diagnosis – he went into a therapeutic preschool and was mainstreamed into the public elementary school by 4^th grade. He had an aide with him through high school. Obviously things were rocky – my parents had to be his advocates before the word 'advocate' came into popular use – but there was always progress. This May he will graduate from St. Joseph's University, and is actually pursuing a more creative field than many "Aspies" (film-related fields), who generally gravitate toward left-brained jobs.

St. Joseph's hosts a program, the Kinney Center, which is designed to provide support and resources to families with children on the Autistic spectrum as well as improving awareness. They have a summer day camp program, which brings together kids on the spectrum with neurotypical children, so the Autistic kids are exposed to social skills and the neurotypicals learn about Autism and accept Autistic kids as their peers, removing the stigma. My brother was selected as a counselor for the program's first year and was interviewed on the news for his role. Additionally, the program provides various after school and evening programs during the school year to work on socialization, and my brother has been hired to teach various courses. He is currently leading a group of high school aged students, as they prepare to make the transition he has so successfully navigated. He is also interning with NBC in their health and wellness area, and has been interviewed on air again, for his response to the effects the show "Parenthood" is having for awareness and understanding of Asperger's children. It's true he is anxious about making his next transition into the professional world, but the opportunities he created for himself in the past year have gone a long way toward easing the process. He is a success story in a way no one imagined could be possible.

He's my little brother, and I remember when he was non-verbal, biting and scratching, hating to be held. My family will always remember moments when society was not understanding – we've been thrown out of more McDonalds than the Hamburglar – but we'll also always remember moments such as the first time he ever said "I love you Mom," at a talent show/popularity contest our high school hosted after his outstanding performance. He recently joined me in my own awareness efforts (for 'invisible illnesses') to do a panel presentation for nursing students at Villanova University (my alma mater), and in answer to a student's question he said "she's my sister and I love her" – another first. I thought my parents in the back of the room were going to pass out from shock. Sometimes I wonder what he had which allowed him to make such progress that others didn't, I suppose it must be the intense support of my parents, but I also think about the battle he fought against stigma and lack of awareness that are slowly diminishing for kids these days. And I'm watching him take an active roll in this progress, such as his work with students in high school, and I'm amazed by this person I never knew was hiding inside my baby brother.

He spent most of his life comparing his accomplishments to mine; I hope he knows now why that never mattered. We are so much alike for all our differences…I hope the world is ready for usJ

A Sjoggie's Night Out

2011-03-29T23:01:00.001-04:00

Web Radio Appearance Rescheduled

For anyone who may have missed the update...you can still 'hear me hear me' on web radio...in 2 weeks. Trish, the lovely lady who hosts the show, has not quite recovered from a recent procedure and we had to reschedule. We have now booked my guest appearance for April 10 - which happens to be my birthday - so I will post new details closer to that date. And in the meantime, if you're the praying type, please include Trish in yours so the rest of her recovery may go smoothly and she can return to the work she loves as soon as possible!

In the meantime, I had a weird thought to share with you (yes, I know, just what you've always wanted).

A Sjoggie's Night Out

Picture found here, from Payless Shoes.

On Saturday, Shawn's firehouse had their annual banquet. While officially "semi-formal", it brings out every outfit from leggings and tunics to strapless body-hugging cocktail dresses. Many of the girls get their hair done, and the local nail salons are practically overrun (which is saying something, considering my town is known for our abundance of pizza parlors, parks, and nail salons...don't ask me why). It seems over the past six years I've tried every look imaginable - one year I went hot & spicy with a long red halter dress and sassy strappy shoes with big sunny flowers on them. Another year I wore the "anti-Jen" outfit, comprised of a blue strapless dress, high pointy silver pumps, and a sleek hairdo (things I generally avoid). Of course, I've tried the pant-ensembles as well - something every inflamed-jointed Sjoggie appreciates especially in the unpredictable weather March brings. This year, I think I finally nailed a look I'm pretty happy with - but in the process I noticed a few peculiar things I have to cope with for a night on the town. Afterall, no special event would be complete without giving consideration to my physical (dis)abilities, so here's a list of battles I fight with my body to get out the door and through the night.

Challenge 1: Time!!
Getting ready for something like this is truly a day-long event. As you'll notice from the rest of the challenges below, to ACTUALLY do my hair and makeup, get into my outfit, and out the door takes a while (more than just the stereotypical 'girl prep'time). Oh, you want to do it without getting into a fight with my husband or sobbing? Tack on another hour or so.

Challenge 2: My Arms & Shoulders
I can't afford to get my hair done for this so I have to plan and execute a style myself. This is always one of the hardest things for me. Leaving aside the fact that my hair is as stuborn as I am, any look I try to go for involves holding my arms over my head for an extended period of time. With the style I chose, I had to obviously start by washing my hair (arms raised), blow it out (arms raised AND flipping head over), roll it in hot curlers (arms raised and dexterity), coerce the locks into a style after curling (arms raised and finer dexterity to use pins)...ugh I'm aching thinking about it. And a little side perk - the hairspray isn't exactly sicca syndrome friendly (dry eyes + hairspray = problems).

Challenge 3: My Hands
With antibodies that go for connective tissue & chronic inflamation comes a certain tendon-cy. Ha, haha, get it? Tendon? Tendonitis? Tendon-cy? Hoo boy I guess those hairspray fumes are still affecting my brain power.

Well anyway...yes, I am prone to tendon problems pretty much throughout my body, though the majority of these problems manifest in my hands. In particular, the tendons in my hands which connect to my thumbs get pretty darned angry. Imagine fanning yourself with a flyer or brochure - those are the tendons I'm talking about. It's amazing how many things we do which use those tendons...and which it is now hard for me to do at all. For example, I can't handwash dishes anymore because holding plates and working the sponge or towel into crevices sets them off (no, this one's not a joke, it's really not funny being dependant).

There are countless other things I do that use (and aggrivate) those same tendons. They acted up while putting on makeup, fighting with an awkward side-zipper, and using hairpins or other hairdo activities (see above). Possibly the most obnoxious task? Putting on hosiery. For those who don't know, to put on a pair of hose one must scrunch up one leg and then using all your strength battle that scrunched hose up - carefully maintaining the right balance of 'yank' and caution lest one wrong move pop a run. Then, with that leg partway up, you balance while scrunching up the other leg and starting the process over, this time while pinned to your half-hosed knee! Then when they're about even, you start the similar process of getting them the rest of the way up, which includes all the previous steps PLUS a very bizarre looking dance. This was possibly my most frustrating and surprising challenge of the night.

Challenge 4: High Heels
Stiletto pumps (pictured above). 'Nuff said. (Although, small victory - this is the first time I've EVER kept shoes this style on my blasted feet as I walked!)

Challenge 5: Purse Packing
This sounds like it shouldn't be so rough, but I was trying to get all my necessities into a tiny bag. What are Sjoggie necessities? Well, there's the usual things - credit card, ID, business cards (I never leave home without them); then, the girl things - nail file, lip stick; the things every good wife carries - a Tide pen. But then I still have to cram the Sjoggie supplies - eye drops, Advil, stomach meds (gotta love that GI system involvement that springs up at the worst times).

Challenge 6: The Cold
And finally, we get out the door...and into the cold. I faced the usual choice - which coat. There's the amazing warm jacket I've fallen in love with this winter, but which not only ruins the look but also leaves it's down feather filling calling card on everything I wear. Then, there's the long black trench coat which makes my outfit and almost makes me look skinny no matter what, but doesn't provide adequate protection against the below-freezing temps. Of course, I chose the trench coat (hey, I'm usually pragmatic but once or twice a year a girl's gotta feel like a real woman, not some balsawood toy plane held together by paperclips and rubber bands). I may have made my choice but of course I still had to live with it - and pay for it

Challenge 7: The Day After
The grand finale - and one familiar to every Sjoggie (or other chronic patient) I've ever met. So I wore out my arms and tendons in my hands, did battle with nylons (or whatever those things are actually made of), and out of sheer pig-headed will danced the night away in my silly (but oh so pretty) shoes. The next day I felt like I'd done the tango with a battling ram. I only wore stilettos on my feet, why did my whole body have to pay for it? I guess because the only time my whole body communicates is to share inflamation. It's now three days later and I have a sore throat, extra dry eyes, and a lingering problem with my left hand.

Was it worth it? I don't know, ask me after my next dose of Advil. Hm, I wonder what I'll wear next year....

Hear Me, Hear Me! On Web Radio!!!

2011-03-19T22:23:00.000-04:00

I’M GOING TO BE A GUEST ON THE SHOW!

I’m happy to announce that I’m going to be a featured guest on Optimal Health Seekers’ Radio (OHS-Radio) on Sunday, March 27, 2011 at 4pm eastern!

OHSRadio is a radio show that educates inspires and empowers people motivated to take an active role in finding their own personal level of optimal health.

The host of the show, Trish Robichaud brings a voice of compassion, logic and humour to those who are motivated to take an active, even proactive role in managing their health.

She is a multiple award winning Disability Awareness Coach, Maximum Life & Business Coach, Author, Facilitator, Advocate & Motivational Speaker who lives with multiple sclerosis and major depression. She is a woman with a disability but she is NOT a disabled woman.

For those of us living with chronic illness, disability or some other ongoing health condition, finding the resources, energy and motivation needed to optimize our health can be daunting to say the least.

Trish Robichaud is passionate about helping people living with chronic illness or disability how to honour and accommodate their health while striving to achieve optimal health, personal fulfillment, work/life balance and entrepreneurial success through spiritual growth, confidence building and self-acceptance.

Please listen in on Sunday, March 27, 2011 at www.OptimalHealthSeekers.com as Trish interviews me about my journey with my health and how I’ve created a life seeking optimal health while pursuing my passions!

~Jenny Pettit
UII – Understanding Invisible Illnesses

PS… If you’re living with health issues yourself, please take a moment to visit www.MyOptimalHealthClub.org and check out Trish’s free trial membership. It’s the only health-related membership program on earth that provides its members with Life Coaching as a primary benefit of membership!

What Do You See?

2011-03-13T21:48:00.000-04:00

Pictures are powerful. Images of the devestation from the earthquake in Japan have been flying around the web and news outlets, expectant new fathers stand anxiously by while their wives give birth, camera in hand, and photographers sometimes generate the highest bill for couples getting married.

Those of us with invisible illnesses spend quite a bit of time thinking about images; about the visual world around us. As you know by now, we more and more turn to images as symbols of the unseen battles our bodies fight each day. Our illnesses are like the wind - known only by the effects they have, effects which can move heaven and earth and shape mountains in our lives. You can't see the wind but know it is what blows leaves from the trees. Likewise, you often can't see something under a microscope for our diagnoses, but the pain, exhaustion, or damaged joints are just as real as the naked trees.

We used many pictures to help convey our messages at the VU+UII panel (thank you again to everyone who contributed). Our display was one way to use images to send a message. Blogger Mama, a fellow Sjoggie who writes about her experiences as a patient with invisible illnesses and stay at home mom to a dynamo of a toddler, has taken on her own project using photos in another way to spread awareness. Visit her latest post, Pop Quiz Time. There, you can look at a few pictures and leave your guess as to who has an illness and what that illness might be. It promises to be a very interesting reveal when she shares the results in a week!

Want to "see" more? Check out these blogs and friends of mine on Twitter, who use photography and other visual arts in amazing ways!

http://twitter.com/fragileannie or It's Time to Get Over How Fragile You Are
http://twitter.com/leeannthill or The Butter Compartment
http://twitter.com/artappleaday or The Feeding Edge
http://twitter.com/Abeeliever or Una Vita Bella (she helped start the whole photo display idea)
Or, consider following those on my Twitter list or subscribe to The UII Connections Daily which gives a great compilation of activity on the wide range of II's represented in my Twitter list (you do not have to be on Twitter to subscribe to this "newspaper" feed).

Guest Post: You've Helped Me

2011-03-09T19:07:00.001-05:00

Our next guest post comes from another Jen! "Daisybee", as her friends call her, blogs at Suicidal No More about living with mental and chronic illnesses to inform, educate, and offer hope. As a consumer advocate for people with mental illnesses like herself who does PLENTY of public speaking, Jen has great experiences to share with us at UII. She says that having lived with several invisible illnesses - including Schizoaffective Disorder, Sjogren's Syndrome, and Fibromyalgia - for many years, she is excited about the efforts UII is undertaking and feels this blog is an excellent advocacy tool (her words, not mine:)). Jen, we welcome and salute you!

"You've Helped Me"

Bayside HighSchool sits directly across the street from the county jail, so the view from the parking lot is not exactly one that inspires hope for the future. As I entered the high school early on a November morning, I was filled with a mixture of anxiety about the task at hand, and looking forward to trying to give that very thing the surroundings lacked – hope – to the students I was about to meet. One of my fellow members of the National Alliance on Mental Illness (NAMI), Dick, who has a daughter with Schizophrenia, and I were meeting up there to take part in the Great American Teach In of 2010.

Our task was to speak about mental illness, and mine was to speak about my own. As we took a tour, a school staff member told us that students could be enrolled at this alternative high school until they graduated or reached the age of 24, and that it was a school of last resort, the place that would accept students who had been expelled from other public high schools or who had recently been detained in the juvenile detention center. These facts made me a bit nervous about what we were going to encounter. I pictured teenagers throwing spit balls at me and laughing as I talked about very personal matters, and wondered how I would make it through five classrooms of this. I was soon to find out that my fears were unfounded.

Instead of laughing, the students listened intently and quietly without causing any disruptions. Sure, there were a few who slept through our presentation, but I imagine that I would find a sleeping student or two in most high school classrooms at 8:00 A.M. What I spoke to them about were things that I don’t bring up in everyday conversations with most people I come across: my high school era depression, the addiction I had to self-injury as a teenager and young adult, the years I suffered from Anorexia Nervosa, and the more recent struggles I have gone through with Schizoaffective Disorder. I figured that there were students who could relate to some of the discussion, particularly about Major Depression, which is such a common illness, and I longed to give them some hope that they, too, would one day recover from that, as I did. As Dick and I told these young people, suicide is the third leading cause of death in high school , and the second leading cause in college students, so it is important to get help if one is dealing with depression and suicidal thoughts. We stressed that suicide is never a necessary choice, and that there is affordable and accessible help available.

While these subjects were easy for me to discuss, I was not confident in my ability to disclose the details of the past decade of my life. Talking about being psychotic with Schizoaffective Disorder can be tricky no matter who the audience is. In the past couple of years, I have spoken to police officers, volunteers at a performing arts center, and the staff of a community mental health center. For six years, I have also written a blog where I discuss my disorder frankly, and try to give information and inspiration to those who might not understand mental illness, as well as those who live with it and feel alone in their battles. Talking to teenagers, however, was new to me, and yet, somehow, it ended up feeling much easier than I expected it to. I told them what it was like to experience auditory hallucinations (i.e., hearing voices), visual hallucinations, and delusional thoughts. I described some of the beliefs I had when paranoid and delusional, and how I had wandered around aimlessly, moving from place to place as I could not keep a roof over my head, and feeling lost as I could not attend college or work at any job for years. I told them about voices telling me to die, the deluded thoughts that I had about how I was supposed to die, as well as the luck that I had in surviving several suicide attempts and in avoiding one that would have most likely been lethal.

Finally, I described one of the best things that had ever happened to me, which was, surprisingly, being taken to a hospital in handcuffs and kept there for five months under the orders of a judge. It certainly did not feel like a positive experience at the time, and only with years of reflection did I come to consider it one of the best things that had happened to me. I had been hospitalized many times before that, but had always been released within a week or two. I had never been properly diagnosed nor had any effective treatment, until that judge decided that this time I wouldn’t be leaving so quickly. Thanks to the good graces that exist in the universe, I had been put on medication that worked for me. It did not work immediately, however. If I had not been kept in the hospital for months, I probably would not have been put on successful medication. But once it did work, I began to think clearly again for the first time in years, and was able to come to grips with the fact that I had a serious mental illness which I had been living with for a very long time. After those months in the hospital, I went to live in a group home, and after ten months of that I moved into an apartment. I told the students about how I have now lived in that apartment for four years, which is the longest time period I have ever spent living in the same place as an adult. I told them about going back to work part-time, finding a therapist who was extremely helpful to me at the community mental health center, and returning to college part-time. My purpose in telling them about these successes was to let them know a person with a serious mental illness can get better.

After I finished speaking, some of the students asked really interesting questions. One young woman said how she was on medication for a mental illness herself, and she wanted to know if I had ever taken the same medicine, or if I had ever been in the same psychiatric hospital where she had been a patient. Another asked what gave me the courage to stand in front of this classroom and talk about such personal information. I said that, even though I was nervous, it was a worthwhile experience for me because of the possibility that I might help one person, and make a difference in one life. “You have,” a young woman in the front row said. “You’ve helped me”. I felt fulfilled right then, and grateful to this girl for having the bravery to say so in front of her entire class.

The teacher of our last class period mentioned that the student body had lost one of their members last year to suicide. She said she was very grateful that Dick and I came to speak at this school about this topic, because many of the students in her English classes wrote about emotional issues, being depressed, or feeling suicidal. She said that she had students leave suicide notes on her desk, which made me extremely grateful I got to have contact with the young people in her classroom that day, because there was obviously a need for information about mental health in their lives.

In addition to talking about my own story, Dick and I both talked about the stigma that enshrouds mental illness, and the fact that people with mental illnesses are really not more likely to commit a crime than people without mental illnesses, according to NAMI. In fact, those of us with mental illnesses are far more likely to be victims of crimes than to commit them. We talked about the stigma perpetuated in Hollywood movies, and the differences between those stereotypical portrayals of people with mental illnesses, and the reality that we are actually just regular people like everybody else. I really wanted to stress the fact that having a mental illness does not mean you have a personality defect, a character problem, or that you deserve to be made fun of for being different. The students seemed interested in this aspect of the presentation, and I felt it really got through to them when some of them opened up about their own illnesses, or those of their friends.

At the end of the day, I was tired, but actually felt refreshed. I truly came away from that school building, across the street from the ugly county jail, feeling like I had made a positive impact on some young lives. Even if the impact had been a small one, I knew, because of the young woman who told me so, that I had made a difference, and I think making a difference makes any given day worthwhile. I felt, also, like I had come full circle from the suicidally depressed and painfully shy teenager I once was, afraid to speak up in a classroom or talk to my classmates. My first suicide attempt was when I was fifteen years old, and back then I never thought there was hope for me to feel happiness again, much less become a public speaker about mental illness. I was able to use my voice now, to speak out about that which too often remains shrouded in darkness and secrecy where stigma sprouts like a cancer. I know that telling my story is the best way that I can combat that stigma, the stigma that keeps so many people who live with mental illnesses from getting the help they desperately need, and I always feel gratified after doing so. I can only hope that one day, one of the students living with a mental illness in that high school will find the help she needs, and maybe she will even want to speak out, spread awareness, and become another voice in the darkness, offering a helping hand to those who are lost and need one.

A Few Days Left - How Do YOU Use Technology For Your Health?

2011-03-02T10:58:00.001-05:00

WEGO Health is conducting a study on people’s use of new technologies for health and they need your voice to understand the potential of technology to empower patients.

The survey will take about 10 minutes (you can stop anytime & come back later). All completed survey responses will be entered into a drawing to win an iPad, one of three iPod Touches or one of 200 iTunes gift cards. Everyone will receive a report on our survey findings.

This survey won’t be open much longer, so jump in now!

Take WEGO Health’s Health Technology Survey: http://svy.mk/eJvSow
Reminder: Our survey takes only 10 minutes and all completed survey responses will be entered into a drawing to win an iPad®, one of three iPod Touches® or one of 200 iTunes® gift cards. Everyone will receive a report on our survey findings.

I took this survey and enjoyed the nature of the questions. It takes just a few minutes, and honestly I got something out of just taking the survey - I found out about technology applications and options I hadn't known existed!