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:)!

Bang!

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

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

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

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

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

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

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

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

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

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

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

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

HAA!

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!

Forgiving Myself

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Holiday Travel Tips

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

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

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

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


Photo found here.

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

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

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

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

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

4.      Sometimes air is not your friend.

5.      Fear live people, not dead ones.

6.      Listen to the crazies.

7.      Every crisis is a learning opportunity.

8.      Everyone should know how to use a whip.

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

10.  The right hat will work in any occasion.

Happy Gobbles, my fellow turkeys!

Living Happily Ever After: Building a Brighter Future

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

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



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

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

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

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

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

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

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

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

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

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

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



Lightbeam image found here.

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

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

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



Image found here.

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

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

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

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

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

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

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

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

After the Honeymoon: Chronic Illness in the Workplace

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

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

Cartoon found here.

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

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

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


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

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

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


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

Once Upon a Time: A Tale of Disclosure

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

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

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

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

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

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

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

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

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



Image found here.


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

Say WHAT?!

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.