New Therapy Checklist - 10 Answers You Need

On any given day, we patients progress through a common linear set of events, such as the following:

• We go to the doctor with a problem - a new symptom, increased frequency or severity of an existing symptom, or even to manage an asymptomatic issue of which we were already aware.
• Especially in the case of a chronic illness, we celebrate a possible treatment which may alleviate this problem.
• Eager to improve our lives, we start down the treatment path prescribed (be it pharmaceutical, physical, or another type of therapy)...and quickly encounter a side effect.  Or perhaps we don't seem to experience relief, or maybe we do but this relief is incomplete or short-lived.

We're now faced with questions: Do I stop my treatment?  Is this normal and safe?  Is it normal but not safe?  Are there things I can do to make it more tolerable?  Does this mean it isn't working for me?

We have these questions because we didn't know what we were getting into.  Either we misunderstood what our doctors told us, or perhaps they never even told us many of these details to begin with.  The doctor's role isn't restricted to managing our illnesses, it also includes managing our expectations, and that clearly doesn't always happen.

Today while covering day one of the Patient Summit USA conference as part of the WEGO Health Press Corp, I listened to several presenters discuss critical aspects of the patient-provider relationship that impact how likely patients are to adhere to a course of treatment (especially medications).  In fact, "adherence" was the buzzword of the event.  From these conversations and drawing on my own observations as well feedback I've received from other patients, I was able to identify several key questions I believe a patient should ask about any treatment prescribed for them.  As was pointed out to me by Dr. Steven Feldman who gave the opening speech this morning (yes, a DOCTOR said this, not a patient advocate), the fault doesn't lie solely with the patient - the provider has an obligation to communicate with the patient and to do so effectively.  After all, if you say something but no one hears it, did you say anything at all?

So, in light of this argument that doctors should take a more proactive role in getting information out to patients even if they don't ask, I believe that, as always, it is ultimately on us to ensure we get the level of care we require.  This care and information need to be at a level we can understand if they are to be used to their utmost whether we get that by reading information sheets or asked questions of the provider during the visit.  And therefore I present to you not 10 Questions to Ask, but 10 Answers to Have about any course of treatment before leaving the office.

I feel like purchasing this post, found here, for a few physicians - and patients - that I know!

1. What diagnosis does this treat?
2. What symptom(s) does this treat?
3. How does it work - what is the mechanism or process (i.e., stopping this from happening, increasing that, and so on)?
4. How much improvement can I expect (full relief, partial recovery, etc.)?
5. How long does it take to begin seeing a change in my symptom or condition?
6. How long before the full extent of relieve I can expect should be realized?
7. What are normal side effects which don't indicate a safety risk, and how can I cope with them?
8. What are abnormal or particularly worrisome side effects which signal I should stop the treatment?
9. Are there any other risks I need to consider, such as long term effects or interactions with other medications or supplements?
10. Why do you think this is the best treatment for me at this time? OR I have some concerns I'd like to discuss first.  (Depending on how you feel about the treatment.)

I can't stress enough the importance that you don't just ask these questions, but that you really get answers.  Answers which MAKE SENSE TO YOU, at least to a reasonable extent.  YOU have to follow this course of treatment; YOU have to make decisions while on the treatment about hurdles that may arise; YOU have to live in the body that was affected by these decisions.  Here's an example of what I would consider reasonable answers for taking Plaquenil, a common maintenance drug prescribed for Sjogren's and related conditions.

1. Plaquenil is being prescribed to treat Sjogren's Syndrome.
2. This medication should help minimize overall inflammation and general disease activity such as brain fog and fatigue.
3. Plaquenil helps reduce these symptoms by suppressing the autoimmune system so it won't attack healthy tissue as much.
4. This course of treatment is meant to reduce existing symptoms that are due to highly active inflammation processes in the body as well as slow the progression of the disease going forward.  While possible, it is not likely that the patient will have complete relief from these symptoms.  The patient should expect to notice an overall more comfortable level of functioning with less fatigue and brain fog and fewer and/or less severe flares.
5. Patients usually begin to notice improved symptoms in 3-4 months though not complete relief.
6. It may take as long as 9 months to realize the full extent of the improvement so we usually ask patients to stay on the treatment at least this length of time if possible.
7. Some patients have mild nausea when taking the pills, so patients may want to take them with a glass of milk.  Also, it is not uncommon to have unusual dreams while taking this medication but this side effect is not harmful to the patient.
8. Patients may experience more concerning side effects.  If a patient become physically ill for 3 or more days after beginning the treatment, discontinue use and contact the prescribing physician.  If the patient has symptoms of a severe allergic reaction such as swelling of the throat, discontinue use and seek emergency medical assistance.
9. Two primary long-term risks are associated with Plaquenil.  In some cases, patients taking this medication for a long time develop retinal toxicity which affects vision - therefore, we will have to get certain eye exams every 6 or 12 months to detect any build up before it affects your vision and can be reversed.  The other effect can be liver damage, so we will run common blood tests before every appointment to monitor for signs that it might be affecting your liver function.  We don't see these very often and both are reversible when caught early so we will stay on top of these tests.
10. I believe this is a good treatment for you because you do not have many risk factors, the treatment has a strong history of success in long term disease management, is inexpensive under your insurance, and simple for you to use.  Other treatment options have lower success rates and more side effects, so I'd like to see if this works before trying those.

These really are basic pieces of information every patient should have about their own care.  We are not employees to be directed, we are customers hiring a doctor to provide a service - care and guidance.  Never lose sight of your own right - and obligation - to make the final decisions about your own health!

Kindling

Fire is a life source.  We all know the cliches, about how fire transforms, it creates and it destroys, it changed human existence and in fact the world forever.  It is huge and yet it is nothing; it has no substance.  It is terrifying, but it is also beautiful.

But fire also dies.  Fire pits, bonfires, even expansive forest fires will eventually burn out.  Nothing lasts forever, not even fire.  And yet, we can always start fire anew.  Sometimes it even restarts itself.

©2010-2012 ~persistentgloom

When a fire "dies", it still retains a tiny bit of life.  Embers can survive even buried beneath debris for days.  All it takes for an ember to bring about the life of a fire anew are the right circumstances and some scraps - wood or material otherwise considered worthless - which are known as kindling.

Image found here.

We humans are fire.  We destroy, we build, we leave nothing untouched.  We eventually run out of fuel and sometimes it appears we've lost the passion that drives life...but we don't truly 'die'.  We are more than raging, uncontrollable flames - we are also embers, waiting for the right kindling.

It's been a long time since I've posted.  The demands of my job, trainings, and some scattered projects have taken their toll, on top of which the springtime (formerly a favorite part of the year) has become the worst for my overall health.  The wildly fluctuating temperatures coupled with seemingly endless rain & humidity play games with my physical being.  Coping with all these forces as well as plain old exhaustion and has left me drained.  

In a webinar I did with WEGO Health on "IRL Activism" (In Real Life), I was asked to summarize a few of the lessons I've learned into tips I could share.  One of the biggest hurdles I face in common with my peers everywhere is burnout, and I was asked how I cope with that.  The best I could offer is to let yourself be burned out.  Give in to the void.  Just as you would switch gears to cope with physical pitfalls, you must also allow yourself to heal from emotional, psychological, or even spiritual ones before pushing back into the grind.  I think, perhaps, it's not a coincidence this is called "burnout" (though, I swear it was a coincidence that I ended up saying it in this post - it's one of those posts unplanned, which gushes out of me unaffected by my urge to organize).  This 'burnout', like a dying fire, is full of embers and if you can be patient and observant, you will find your kindling.  Your fire, passion, will burst into new life, almost of its own accord.

(Although, I certainly didn't say it with this finesse...maybe I should ask for a transcript revision;).)

I think I'm finding my kindling.  I am not dead; my passion, my activism, my dreams, and my life are not dead.  I've just been stuck for a while on "smolder".  But tonight I felt a scrap of kindling fall in my lap and catch, warming itself as well as the world around it, and now eager with the potential to show its full force.  I just might burst into flames.  Tomorrow I will finally get to wear my Walking Gallery jacket for the first time. In 12 more days, I'll not only get to wear it again, but do so besides dozens of other exhibits in this gallery and the mastermind herself Regina Holliday, when we form a true Walking Gallery in DC.  The thought went through my head "I don't know which I'm excited about more"...and my embers glowed.  I'm ready at long last to explain the Gallery and my story depicted in my jacket, "The Picture of Health".  And I'm ready to burn up the web by resuming my blogging.  It's been a painful month since my last post (again, I swear that was coincidental too) and writing again really feels like I've come back home.

I'm glad to be back, readers, and hope you're ready because I can feel the impending blaze.  It's going to be a beautiful thing.

Image found here.

UII Blog Carnival #1 - Successes!

Wow, I am overwhelmed!  I was nervous about putting out the request for submissions to our first blog carnival, because I thought no one would respond.  It's not always easy to break into new projects.  But your support was overwhelming!  Many of my blogger friends posted links encouraging others to sign up, sent in their own submissions, and WEGO Health jumped in before I could even ask, sending bloggers my way.

And what an inspiring bunch of writers you are!  The topic for this first UII Blog Carnival was 'success stories'.  I asked writers to send me their tales of treatments/procedures/tips that made their lives, or the lives of their loved ones, better.  This was my sneaky way of giving you a two-for-one: (1) really good reasons to be positive and hopeful, and (2) some concrete ideas of things that have worked for others.  Enjoy - I did!

Image of Awesome Kid found here.

Elisa, who tweets as @SjogrensStyle and maintains a blog by the same name, reminds us even things that aren't perfect can still be pretty great.  Her post "Friday Favorite: Plaquenil" covers the joy of an improved general well-being, weighing benefits & risks, and best of all - answers a question I've been wondering about for years (thanks for the history lesson)!

Licensed marriage & family therapist Laura shakes things up a bit...literally.  Instead of a traditional blog, she sent me a link to one of her articles published on the website HalfMoonBayPatch, titled "Dancing Despite Disabilities".  I'll be honest, I think Laura wanted to remind us our lives & passions don't stop when we're diagnosed, and I LOVE that message...but I also saw a hidden gem in this article.  Read closely and see if you notice the way one person helped themselves GET a diagnosis - which in turn led to their ability to regain their life!  Follow Laura on Twitter at @lcstrom.

@IBSTales tweeter Sophie Lee discusses a set of challenges familiar to many readers.  After beginning several treatments at once, she now wonders which are actually helping and which may be extraneous.  However, stopping them poses the risk of returning symptoms.  Read about the successful treatments Sophie uses & how she works through the question of which are really necessary in her timeless post, "Gaining Control".

Our next contributor copes with many "invisible" realities which complicate her life, especially how she interacts socially.  Blogging under the pseudonym Displaced and tweeting at @GonnaEatWorms, this blogger touches on many of the emotions that come with prioritizing your own needs.  I relate to many topics in her post "Claude Raines has nothing on me!", such as the silver lining to having a condition which is 'invisible' and the inherent responsibility many of us have to force society to deal with things that make it uncomfortable.

My brother Jon, who tweets at @thedorfist, has been a guest blogger for me in the past.  He's started a new blog, chronicling his revelations in the post-collegiate world of the Asperger's degree holder in The Aspie Epilogue.  In his recent post, "...But Does It Blend?", Jon discusses key considerations in moving past emotional explosions (or helping an Aspie to do so) and how to grow from these experiences.

Sjogren's and other invisible illnesses are not limited to the English-speaking, of course.  One of my long-time favorites, Jazzcat, is a bilingual blogger!  Jazzcat's entries are written first in her native French, then translated (by her, not a machine!) into English in the second half of every post.  After beginning to practice yoga a year ago, she swears by it for therapeutic & mobility purposes today.  Read about her first attempts in her post "Yoga Cat" and her recent update, "Flying Away".  Merci, Jazzcat!  C'est tres bien!

Kristen, better known as Blogger Mama, shares her discovery of a new type of eye exam which is performed more quickly and is gentler on the patient than traditional exam methods (especially for those who need special exams for medical reasons, such as taking Plaquenil)!  I'll be speaking to my doctor soon about the method Kristen described in her post "Eye Doctor"!

Then there's Julia - ah yes, @JuliaReasonWell on Twitter - who never disappoints!  Enlisting her trusty Cannon camera and accomplice Goldie the Prius, Julia reminds us that we have to make choices but it's ok to sometimes choose what makes us happy.  In her post "Where Julia Went in the Sunshine", she chooses enjoying some of her favorite spots in nature (with the proper precautions for a Sjoggie, of course).  Check it out to see how she balances wants & needs, along with some rockin' photography!

My new friend Tosha doesn't tweet, but does host a Facebook group with the same name as her blog, Bottled Time.  Her post, "I Do Tricks for Treats!: My First Experience with Cimzia for Inflammatory Disease", is quite funny!  While discussing the very serious & important topic of injectable biologic medications, the post is sprinkled with chuckle-worthy pictures & chortle-inducing perspectives.  Don't skip the links at the end of the post - even the descriptions were an endorphin boost!

A woman who claims to actually be capable of "Falling With Grace" - a feat I will never master, as I am a pro at falling but not so great with doing it gracefully - practices a habit we can all do.  As blogger Amy explains in her post, "Word", this tip doesn't require money, equipment, special food, or even much time...just willingness to give it a genuine try.  Now that's a hard one to ignore!

Embracing a similar approach, chronic patient Chelsey started her blog, HOPE - Helping Other Patients Everywhere.  I relate to many ideas in her post "Encouragement and Perseverance", which describes (and demonstrates!) her in-charge mentality for dealing with very intrusive chronic illnesses.  I think my favorite part is the 'conversation' between Chelsey & her illness.  We should all be so determined!!

Bennet Dunlap (@DiabetesMayVary) is pretty unique among our carnival bloggers.  He is the caregiver for his children with Diabetes, one of two male contributors, and one of four contributors I've actually met in person - and, will be presenting with UII at a conference in May on the Digital Patient Bill of Rights, which was developed at the Digital Health Coalition event we did together in September.  In his classic post "What Is Your Goal?", Bennet delves into the questions parents of kids with chronic health issues must ask of - and answer for - themselves.  Bennet reminds us to keep our eyes on the real prize.

How about one more for the road?  Our favorite 'gimpy girl', Bridget, shares her way of staying 'Bridget' despite the best efforts of her aggressive chronic illness.  See how, by "Sewing Through the Pain", Bridget found a way to really leave her illness out the equation (safely).  She's not battling it, ignoring it, or even attacking.  She's simply being herself in spite of it.  And I love her for that:)

"...or Brother"!  Image found on SodaHead, here.

And there you have it!  Lucky 13 contributors with actually 14 posts among them, for your hopeful & healthful pleasure!  These bloggers collectively share an incredible array of tactics for making life as a chronic patient better - physically, emotionally, and even spiritually, and I know you'll enjoy what you find.

Gee, I can't wait for the next topic!!

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:)

We are UII - in NYC

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!

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.



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!!

Deadline Extended

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!

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!!

Readers – Help Improve My Blog & Share Your Thoughts!

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!

Guest Post: Komen's Wild Ride

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

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

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.