December 29, 2011

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:)!

December 27, 2011


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.

December 11, 2011


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, 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 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:)

December 10, 2011

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!