September 22, 2011

Say WHAT?!

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, 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!

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!

Photo used with permission of Klick Pharma: ©2011, All rights reserved.

September 15, 2011

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

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!

September 13, 2011

History Reinvents Itself

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!!

September 7, 2011

IIAW 2011: 30 Things

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.

September 1, 2011

And Now a Word From the Sjogren's Syndrome Foundation

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!)