Some Hypochondriac I Am!

When I was little, they said to my mom:
"She's attention-seeking."
"She's trying to get out of class."
"Does she only seem sick after she's spent time with you?"

As I got older, they said to me:
"Just because your parents said you have arthritis doesn't make it true."
"There's a difference between out-of-shape and sick."
"If you tried to make yourself floss your teeth wouldn't have so many problems."

While becoming an adult and with diagnoses - names - for what I had, they said still:
"Must be nice to get these breaks."
"How convenient that you got sick before the due date."
"You don't look sick to me."

Even as an independent woman, diagnosed a decade and engrossed in health activism, I've been told:
"I just don't buy it."


You probably didn't know, dear readers, but I'm a hypochondriac.  I must be.  What 20-something predicts weather fronts from joint pains; what teen really gets sick around major assignments that caused a great deal of stress; what 3rd grader wears long-johns to guard their arthritic legs in the cold.  Who gets sick, after all, from eating first thing in the morning - and getting your head wet absolutely cannot lead to a cold.

I guess there's no scientific basis to some things I'd been told.  It seems bones aren't made of porous materials that swell & contract with changes in humidity & pressure much like wood does.  Stress doesn't affect your immune system or trigger flares.  Everyone knows that arthritis checks your birth date to see if you're 'old enough' before causing pain, and a the drop in body temperature from the evaporation process of a wet head coupled with an already defunct regulatory system doesn't leave your body susceptible to illness.

Even my behavior couldn't cover my lies.  Being a top student didn't fool the staff in my schools who knew I was just trying to get out of classes & assignments.  My doctors may have been deceived into giving the diagnoses they documented in letters, but these teachers, school nurses, & staff members could not be so easily duped.

But it turns out I missed so many symptoms.  Some hypochondriac I turned out to be.

I didn't know that the pop & crackle of my joints could be played off as tissue damage.  I had no idea the inside of my mouth where the inside of my cheeks are so dry that tongue depressors hang on for themselves & the flesh appears matte would be a great excuse for my frequent dental carries.  Imagine how much more I could have claimed if I knew my excessive reaction to mild exercise with a pulse that jumps & thorough fatigue afterward could be claimed as signs of a disorder, that problems swallowing are frequently attributed to several conditions, or that my laziness could be titled "brain fog".  I'm getting a little better, though...I know that the problem I noticed lately where I randomly have trouble with my hands in doing tasks such as jotting down a note for someone might be passable as complications from Sjogren's & Fibromyalgia.

It's such a strange feeling when I realize retrospectively that a personal habit or mannerism I've developed over time might actually be claimed as a medical malady.  Sometimes I go for years without coming up with the claim.

I'm really going to have to step it up if I'm going to be the hypochondriac I know I have inside.

Image found here.

How Did UII Do?

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:)!

HAA!

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:)

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

 "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.

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 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!

Photo used with permission of Klick Pharma: ©2011, http://klickpharma.com/. All rights reserved.



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!

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!!

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.

Happy World Sjogren's Day!

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!

WEGO Webinar on IRL

 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!

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

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!

Just a Little Look, Now, Gotta be Patient...

But if you're like me, you're just DYING for a sneak peak!  Of what, you ask?  What else - the UII + VU INVISIBLE ILLNESSES MADE VISIBLE PHOTO DISPLAY!!!!

These are just sneak clips, don't wanna ruin the effect before it first goes up.  Due to the insane snow we've had around here lately, the school had many snow days and cancelled classes, which threw off a lot of schedules and the display wasn't able to go up last week.  But fear not!  Bridget, Shawn, and I couldn't let this go by the wayside, and now the display is done and ready to go up 3 times over this week around campus with the nursing student projects.  Also, many of your pictures and stories will be featured in a pre-panel slideshow next week...and that's not even touching on the tricks and plans I have up my sleeve!  But shhh, not time for those just yet.

Anway, here are some glimpses at the display.  I'll post pics of the full impact soon!

Laid out on the plywood pre-painting:

Your loving display creators - pre-Mod Podge fumes:

The Podge was still drying:

...and STILL drying:

Ok that's it!  In fact, I'm pretty sure that's more than you should see before the whole kit and caboodle goes "live" this week...but you're such fantasticly brave and wonderful people I figured I owed you a teaser.

Also, I just want you to know - each set of pictures came with a story, and those stories moved me in ways I thought I was immune to.  Guess I should have known I have defunct immunity all the way around:)

But seriously.  Throughout this project, Bridget and I have discussed the details over and over.  Some of you shared stories that inspired us because of things you did to raise awareness about your condition (such as our Lyme Teen Beauty Queen) or things you did completely in spite of your condition and just because you love them (like our Boogie Boarding Scooter Traveler).  You tapped into your artistic sides (the Waiting Room Floor comes to mind), and shared secrets you've held inside you until this day (a faded self-injury scar bears better witness than I can). 

We heard from people who had stopped hoping, fallen into depressions, and could no longer believe the world could ever be a better place for you so long as you have an invisible illness.  It was as if this project gave you something to cling to; a reason to dare to hope that society could learn about the way you live and discover all you have to offer...or maybe that you could discover it yourself. 

We want you to know we hold ourselves responsible to you.  So long as we have voices to raise and minds to dream and family to help make it happen, you will be heard.  You obviously don't need us - look at how powerful you are on your own - but just like the Who's in Whoville needed every last Who to scream and shout and save their dustspeck (it's Dr. Seuss, go read it), sometimes we need to speak up for each other.  And so, this puffed-up Prednisone popper would like to remind you "I meant what I said and I said what I meant; an elephant is loyal one hundred percent"! 

Look for photos of the WHOLE display coming soon to a blog near you!

Living Well with Chronic Illnesses

As you may know, I began blogging in September 2009 for National Invisible Illness Awareness Week.  This is an annual national project to bring awareness to the millions of Americans who live with invisible illnesses day in and day out.  This past year, event founder, organizer, and year-round activist Lisa Copen took a new direction, and made it a week about reaching out to those who are not just invisible but also silent; those who may not have known all the resources and support available to them.  (Read more about Lisa, her organization Rest Ministries, and IIAW news here.)

As part of her efforts to draw people - patients as well as the public at large - to her site and this life-changing cause, Lisa reached out to some of her friends and compiled an eBook with with tips for people with chronic/invisible illnesses from 20 'experts'!  (I put experts in quotes because she included me and I'm not sure what I'm an expert on...)  The book was available as a free down load to people when they signed up for daily emails about the event.

In the past few months I've made a lot of new friends online, and with the photography project with Villanova, traffic to my blog has hit an all-time high!  So, I thought it would be a good idea to actually post something useful for all my new readers:)  Once in a while, I have to actually write something useful, right?  So, here are the 9 tips I contributed to Lisa's eBook in September 2010.  If you want to read the other 254 tips, you'll have to go to Lisa's site (linked above) to learn more:)

9 Tips for Living YOUR Life with a Chronic Illness:

1. Redefine what “control” means to you. To me, ‘control’ meant I would decide what I would do and when I would do it – and my disease would have nothing to say about it. Ultimately, I realized that ignoring my special needs was giving control over to my conditions, because I would eventually push myself into a flare. Now I’ve regained ‘control’ by doing the things that keep me functioning – such as using sunscreen or wearing gloves even for quick trips outside – so I can do the things I want.

2. “Do what you can, while you can, so you can continue.” I can’t run, do jumping jacks, or take a step class – but (on a good day) I can walk, bike, or do yoga. Some people have misunderstood my exercise on one day to mean I’m ‘faking’ illness on other days, so I try to explain that by walking on days I can handle it, I’m improving my joints so I can continue walking in days to come. Find what abilities you still have and be sure to use them in ways that improve your prognosis in the long run!

3. Check out teaching hospitals when looking for a specialist. Hospitals affiliated with educational institutions often have doctors versed in the most recent developments, those who have a special interest in specific conditions, and those who are most likely to have an open mind to information you may provide. While not a guarantee, a teaching hospital can be a great resource for finding a doctor who will work with you.

4. Insist that doctors explain treatments to you (including prescriptions) until you understand it. If you can’t answer your friend’s question about how a drug or treatment will help your condition, you shouldn’t be taking or doing it! Asking your doctor isn’t enough if you don’t understand the answer, so insist that your doctor keeps explaining it and uses language you can understand until you are comfortable with the decision.

5. When asking for accommodations, try to suggest another way you can contribute. I had to ask for an accommodation at work to reduce my out-of-town travel and felt nervous how this might impact my job. So, I made sure to mention other ways I can still contribute something special, such as working on recruitment projects or with our “disability network.” These suggestions will show people that you are not looking for an easy out but rather are trying to do the best job you can with your unique needs, and make the changes feel more like collaboration than accommodations.

6. Request copies of all test results (such as blood labs, x-rays, MRI / CT scans, etc.). We all know how stressful it can be to change doctors, or how hard it can be to coordinate treatment among multiple doctors. Having a copy of things such as recent tests will make this process much easier. And remember, your health records are yours by law and you have a right to these copies (though you may have to make a reasonable advance request).

7. Ask your specialist what you should do if you have an urgent question between appointments. Many chronic conditions are not considered urgent care issues (no matter how pressing symptoms may feel to us at times), and so many specialists are unavailable outside of business hours or may lack the ability to accommodate a last-minute appointment. Ask your doctor during one of your appointments how you can contact them with a question between appointments. Many doctors now have email accounts from their affiliated hospital and will readily provide them to you.

8. Learn your family medical history. Research your family’s medical history (specific conditions people had, how you are related, and relevant details), then organize and interpret the information to see how genetic traits could impact you or your children. Chronic illnesses often belong to “families” of related conditions and knowing what is in your bloodline and how it manifested could save a lot of time in getting a diagnosis and effective treatment. Remember to share the information with your family!

9. Have no regrets – on your terms. You know how quickly your life can change – don’t waste a moment of it regretting something you did in the past. If you take the care to be as educated as possible and identify your priorities/passions, even decisions that had unpleasant outcomes will have served a purpose.

Call to Action: Pics for Project with Villanova University

UII is working with Villanova University on a groundbreaking project!  Nursing students at the University will be researching what chronic/invisible conditions are present on campus, and doing projects on them and the effects they can have on body image!  This will be presented in combination with an existing program - "Love the Skin You're In", a body-image focused fashion show (held this year on February 7).

 

At the University's request, UII is coordinating a live panel discussion, which will take place on February 22.  In addition, we have decided to develop a visual display to accompany the fashion show (there will be many displays with body image and health information, as well as the student projects).  This display will then 'travel' the campus as promotion for the panel discussion!  That means at LEAST two full weeks of exposure raising awareness of chronic and invisible illnesses on a campus of nearly 10,000 students, staff, and faculty!

 

But to make the display a reality, we need YOU!  We are asking people from around the country (and around the globe) to send in your pictures showing the 'hidden' aspects of the conditions you live with, such as:

• Good health days (put together, well rested, makeup and hair done, etc) versus flare days (blotchy skin, rashes, exhaustion, oily unwashed hair, and so on),
• Scars, hair loss, patches on skin, or other permanent 'marks' of your condition(s), or
• Revealing the hidden devices you use (insulin pumps, prosthetics, etc)

 

See the bottom of this post for a list of ideas, but use your life for inspiration!  The sky's the limit.  Our goal is to show what lies below the surface; what we really look like in the throes of our conditions.  Our battle scars, if you will.  Also, take an artistic license...black and white, close ups, high or low angles...anything that emphasises your subject is great!

 

General information:

• The deadline to submit your photos is Sunday, January 30; however, the earlier the better as the pictures will need to go through at least two reviews before being sent off to be printed.  I will let you know if we are able to extend the deadline.
• Pictures should be submitted via email if possible.  Please contact me if this is a problem and we'll discuss our options.
• When submitting pictures, please include the name of the condition, issue, or device, and if you want your name to be listed or the photo to be used anonymously (see below).
• We would like to represent a wide variety of conditions that are chronic and/or "invisible" in nature.  If you are unsure if your subject is appropriate, please ask me and we'll discuss it.  Most conditions will be relevant; see list of examples below.
• Pictures should show the 'truth', but please be tasteful - use common sense, if you wouldn't want to show your grandmother, don't show it to us.
• All pictures will be reviewed for appropriateness and space restrictions first by me, then by staff from the University's Office for Health Promotion.  We retain the final decision on which pictures will be included.
• Please indicate if you wish to have your name listed as a contributor.  If you so desire, we will use your picture anonymously.  No picture will be individually identified with a name, but we will provide a list of contributors who wish to be included somewhere with the display.
• As this is a Catholic University, please understand you may be included in prayer intentions as a participant in the project (whether by name or anonymously).
• We will try to let you know if we wish to use the picture again somewhere in the future; however, depending on the logistics of tracking all the photographs, your submission will imply your consent for future use of the image for educational and/or awareness purposes.
• No information will be shared (other than your name, if you elect to be listed); your email address and any other identifying information will be kept private.
• I will be posting pictures and perhaps video of the display and event online when available.
• I will also try to put together a handout or list to go on the school's website of resources and communities students can look into.  If you wish to have a site or community listed, please send me the information so I may review it beforehand.
• Don't forget to send a "healthy" or "normal" picture as well (if possible), so we can show the contrast between the face we choose to present to the world and the one we see in our own mirror!

Examples of Ideas for Pictures (this is just a list of IDEAS; please feel free to use other ideas):

• A profile picture (like the one I use - makeup on, hair done, in a formal suit), contrasted against
•  the bald spot I usually cover (from Localized Scleroderma), or
• of myself in bed totally wiped out with oily hair (because I'm too exhausted to wash it) and pale, blotchy skin with swollen parotid glands 
• A person in an outfit which hides an insulin pump, contrasted against
• them lifting the clothing to reveal the pump and where it enters their body
• A person at an average weight having fun and laughing, contrasted against
• protruding ribs, rolls of fat, hair loss, or brittle nails (for someone with an eating disorder)
• Scars (from surgery, self-injury, or disease progression)
• Patches on your skin (such as scaly patches, red marks, ruddy patches)
• Rashes
• Mouth ulcers, tongue lesions, severely chapped/sore lips
• Inflamed joints
• Discolored or misshapen extremities
• Hives
• With-versus-without a prosthetic (such as standing on two legs then the same pose with one fake leg missing)
• Devices which symbolize something about your life with this condition (for example, I might use an array of eye drops for varying levels of dryness or the denture cream I used to hold in a temporary crown on a tooth destroyed by dry mouth), such as:
• mobility aides
• joint support devices
• testing supplies (such as for diabetics)
• medical paraphernalia (such as syringes)
• specialized furniture

I have created a special email address for this project (which I may continue using in the future):
Please send all photos, information, and inquiries to uii.JennyP@gmail.com (that's uii [dot] JennyP [at] gmail [dot] com).


COUNTLESS conditions fall in the umbrella of Chronic and /or Invisible Illnesses.  A VERY brief list of conditions follows (this is NOT an exhaustive list by any means):

• Autoimmune diseases (Sjogren's, RA, MS, Lupus, etc)
• Diabetes
• Pain conditions (Fibromyalgia, etc)
• Chronic Fatigue Syndrome
• Gastrointestinal diseases (Crohn's, IBS, GERD, etc)
• Mental health / emotional / behavioral conditions (Autism, Depression, Bi-Polar, Anxiety, Schizophrenia, etc)
• Cardiopulmonary diseases (heart disease, pulmonary embolisms, Asthma, etc)
• Cancers
• Chromosomal disorders
• Musculoskeletal conditions (Osteoporosis/osteoarthritis, etc)
• Neurological diseases (Parkinson's, ALS, etc)
• Severe allergies (Celiac, other specific foods, etc)

Life with a Chronic Illnesses: The Pirate Prognosis

Bear with me.  I'll admit, this one's going to sound like a groaner up front but I think you'll enjoy it, so just hang in there...

As you may have noticed, I've had some ups and downs lately.  As you CERTAINLY know, that's par for the course with any chronic condition, and one that responds to changes in weather, stress, and everything else under the sun guarantees at least a few of these trips in a year.  When these loopdeeloops show up, we have to keep relearning some adaptive behaviors (especially if you're like me and seem to forget these lessons). 

Recently, I was discussing some of these refresher lessons with my husband and came to a revelation.  Chronic illnesses may each have a different prognosis - highly controllable or highly unpredictable, systemic or focused on a specific area.  But as far as I can tell, all chronic illnesses share a common fate.  We must all Adapt, Readapt, Rinse, and Repeat....or ARRR - the Pirate Prognosis!

(Picture found here.)

(Stay with me, I warned you it was a corny start...)

Take the seasons for example.  Here in the US, winter is coming.  We've already had a few cold snaps, and at this point even 'seaonsal' temperatures leave me shivering me timbers (wow so I guess I'm going to milk this analogy for all it's worth).  Having Adjusted to the way my body responds to the cold, I have my new gloves for the year and am on the hunt for a replacement for my favorite but misplaced heating pad - these are things I've learned to Repeat every year.  It's not enough to guard against cold Raynaud's hands or bronchitis for one season - I have to keep doing it.

I've been through 20-some-odd winters of course, most of them with at least some major symptoms, and nearly a decade since my diagnosis.  And yet, each year I discover some new problem I have to cope with - and this year will be no exception.  I've already begun facing one new issue: this is my first winter (well, any season) on Prednisone (as well as my first where my symptoms are so progressed that I require Prednisone in the first place), and I'm finding myself surprised again.  I thought I had this figured out!  I thought I knew what I needed to do and was doing it already!  I had adjusted!  But now I have to Readjust.  Oy.

Change is part of life.  We all had to face this when we were diagnosed, or learned a friend or loved one received a name for their condition.  Certainly everyone's body will change as they age - and ours will change in ways we may not have expected.  Even the reaction we get from people around us will change...often in ways that sadden us (lost friendships, ungranted opportunities, etc), but undoubtedly also in positive ways (increased awareness, curiosity instead of condemnation, and so on).  If we can anticipate and accept these changes and the ways they will force us to respond, we can also accept that simply caring for ourselves physically will require ongoing evolution. 

Without a doubt, I'm usually not too thrilled about this fact myself.  I'm an accountant - an auditor, yet - I very much enjoy learning a pattern I can repeat year after year.  But I also see far more benefit in accepting the need to A-R-R-R and allowing it to help me move forward instead of stagnating in a mournful, stubborn stalemate.

Lastly, I'd like to take one moment to acknowledge that the Pirate Prognosis is a highly communicable condition!  That is, those without chronic conditions of their own but who live with, love, care for, or interact with us are just as vulnerable to needing to A-R-R-R with us.  My husband and I started dating in January many years ago.  He was a 17 year-old high school senior, worried more about what role he'd get in his last high school play than arthritic joints and the risk of gestational Lupus.  Within six months, he got into college, graduated high school, and found out his peppy little freshman girlfriend was diagnosed with life-long autoimmune conditions that were spiralling out of control.  Talk about an Adjustment!  That was certainly one most of us wouldn't have accepted (thank God he did, I would be no one and nowhere without him).  And of course, it wouldn't be the last time he had to A-R-R-R...added diagnoses, extended college plans, redefined "baby time lines"...not to mention his own life with redeclared majors, career changes, and so on.

I'm sure my parents didn't expect to have a child with chronic infections, nor the next with behavioral barriers.  They didn't count on childhood owies becoming adolescent ER visits or adulthood headaches.  Maybe they didn't anticipate activism either - in their children, or in themselves (for they truly were our first advocates and still don't back down) - and I hope that at least this rise to our challenges is their silver lining.

There are many groups of people I could mention, who have probably faced this Pirate Prognosis: friends (lost and lingering), coworkers, teachers...even classmates, Facebookers, and web surfers who may have found any of us.  But I think I've taken a long enough walk of this abruptly short plank (sorry, had to get one more in), and you get my point.

I think for the next awareness event we should incorporate eye patches and go around proclaiming the motto "ARRR"!!  Hm, I wonder if we could train a parrot by then...