So What if I Wear My Sunglasses at Night?

For the month of July, WEGO Health is focusing on empowerment.  To this end, they have suggested a few blogging prompts, one of which really caught my fancy.  #4 on their list of ideas is about having convictions.  That's funny, I have a list of quotes I love, and one of the first on it was "It is a blessed thing that in every age someone has had enough individuality and courage to stand by his own convictions" (Robert Ingersoll).  So, I guess I'd better list 5 things I "will not apologize for".  You don't have to agree with me, but instead of arguing, let's discuss...and maybe you'll post about YOUR convictions too!  Let me know where they are and I'll come read them!

I will not apologize for...

1. 'Wearing my sunglasses at night', or Expecting the support I deserve:  There are specific sources from which I expect support - family, close friends, & my employer for example.  What exactly I expect various as appropriate for the source - from my employer, I expect respect & reasonable flexibility, whereas from my family I expect not to be mocked and that they will not look on me as lazy.  (That's where the sunglasses comes from - I get a comment from a family member or two when I wear them after they think it's 'dark enough'.  It really grinds my gears, especially because it has NO impact on them whatsoever.)  I think I deserve these things because of how I approach these sources - I am respectful & considerate of my family/friends & their needs, and in dealing with my employer I am conscientious of their concerns & need to be profitable & fair to all employees.  In both cases, I strive to add value every chance I get.  I don’t expect things without working for them, but since I work hard, I have earned & deserve them.

2. Being afraid of things about my future:  I have some real, founded concerns about my future - but that doesn't mean anyone should roll their eyes at me (which they do).  For example, it bothers me to know that I may wind up in a wheelchair, have increased chances of problems with pregnancy & motherhood, or that with Sjogren's I am 44 times more likely to develop Lymphoma.  There is both statistical, scientific support for these concerns as well as 'experiential' support in the experiences of people I know.  They are real risks.  I have proven myself to be on the whole optimistic & level headed, but find I'm made out to be a hypochondriac, catastrophosizer, and attention-seeker who blows things out of proportion.  I’m as entitled as anyone else to my fears.  I don’t act like one will definitely occur, and like everyone else I hope I’ll have the happiest life possible - but I know they’re real, and I don't like them.  Instead of being mocked or marginalized for expressing them, I believe the listener should try supporting me and reminding me that they will continue to should I ever run into these problems.

3. Going public about my conditions:  Disclosing your conditions or challenges is never an easy decision, and doing so on an international stage for all the world (and your current & future employers) to see simply isn't for everyone.  I respect the decision many people make not to disclose, even if I sometimes disagree with them, as their choice based on valid risks.  But as I see it, someone has to do it.  The reason so many risks (real & perceived) exist is because the misconceptions & fears ignorance of the facts causes in society - the public needs to know, which means someone has to tell them.  To end legal segregation, someone had to face their fears and make a public spectacle; the principle here is no different.  And it's not for everybody - but we each have a job we need to do in this world and for some of us, it's public health activism.  Besides, as I posted before, “I gotta be me”.

4. Being frustrated by the general impression out there that Lupus is ‘worse than’ SjS or other conditions:  Please listen carefully - I'm glad for increased awareness of autoimmune diseases, grateful for every battle I don’t have to fight, and never begrudge those with Lupus (and/or other things) any support they get.  I know Lupus is still vastly under-recognized & misunderstood.  But it’s not necessarily “worse”.  My own mother (who is normally an example of the self-educated patient) still comments that she hopes at least I always have 'just' Sjogren's and that it never 'develops into' Lupus (insert frustrated hands-in-the-air here); my mother-in-law can't seem to remember that they are different conditions; even someone on a Facebook group yesterday posted that they were diagnosed with SjS and RA, but 'at least not Lupus'.  It blows my mind...personally (and this is just my own impression from patients I've met), I'd be far more upset to be diagnosed with RA than Lupus, but that's besides the point.  They are each different conditions, and which is "worse" depends on who you are and how your case progresses.  Take those three, SjS, Lupus, and RA - a progressed case of SjS can be WAY worse than a mild case of Lupus; RA in one patient may be controllable whereas Lupus in another may run amok; and even two people with the same condition will have entirely different experiences.  It’s a case-by-case deal.  I don't want a diagnosis of Lupus, nor one of RA, but my concerns about the dry mouth and problems with my shoulder are at about the same level.

5. My priorities:  Focus here on the first word - MY priorities.  MINE.  ME ME ME.  Obviously I'm not being self-centered, but I am responsible for myself so I have to make my own decisions.  They affect ME.  My priorities don't have to be anyone else's (well obviously Shawn and I have to align ours but let's not nit-pick this one), and therefore they won’t always make sense to others.  They don't have to.  At different times I've had different priorities – in college it was one organization over another, after graduation it was work over social, at a higher long-term level it's family over work.  For a while the CPA exam had to wait while I stuck it out trying to adjust medically to a new job, with Prednisone & other challenges; I knew I couldn’t do that AND handle the stress of this high-pressure exam process.  Even choosing specific causes to support has to be prioritized, and which I choose won't be the same others might choose…I work on SjS projects, choose to participate in one event over another, etc.  I welcome questions about why I make these choices, why something is a priority for me, or discussions about why some people make a different decision - but not insinuations that my priorities are 'wrong'.  Frankly, they're just not something others get to judge.

I guess this entry seems a little argumentative...and while that's not my intention, I suppose it is a reality of life.  Having convictions means standing by them when challenged.  The good news is, I will also support you as you stand by yours.  I want to thank WEGO for encouraging me to explore this head-on, and extra thanks to you for hearing me out:)

Unlikely Insight

Other than the topic of socialized healthcare, political issues don't often enter into my world as a health activist.  Somehow, the greater life problems of holding up as a patient, communicating with the rest of the world, and needing each other to buoy ourselves seem blind to bipartisanship (gee, imagine that).  But as we know, there's an exception for every rule.

It would seem the Chairman of the Federal Reserve also crosses party lines.  Nominated for a second term by President Obama, Ben Bernanke was originally appointed by President G.W. Bush in 2006.  The thought crossed my mind, "how could this man be supported by two of the most dynamically disparate leaders in this country's collective memory?  AND, having assumed his role mere months before a global financial disaster, how did he hang onto his job into a second term?".  Circumstances suggest perhaps he knows something the rest of us don't...or maybe, that he knows exactly what the rest of us do, he just articulates it better.

And with one such articulation, Ben B earned a special place in my heart.  When he was appointed, I was an eager accounting student at Villanova trying to pretend to care about economics (I've since given up on pretending).  But Benny tossed out a gem that I've loved ever since - "Creating monetary policy is like driving a car looking only into the rearview mirror".  True, to the point, relatable - I love it.

"That's lovely...but WHY on earth are you giving us a lesson on Bernanke?  Why would we care?"  That's right, I heard you.  I can read your mind!
Ok not really, but I can imagine.  I have a good answer, I swear.

Benny's message was that his job requires him to make decisions - important ones, that affect all of us whether we realize it or not - without being able to look into the future.  His only resource is history, and honestly even though "history repeats itself", it doesn't do it on a nice predictable basis. 

Another of my favorite public figures conveyed the same thought, but perhaps on a better man-on-the-street level: "Ain't no need to watch where I'm goin'; just need to know where I've been" - Mater.  Yes, as in the tow truck Mater from the movie Cars.  Pixar's all about life lessons, kids, pay attention;)

Oh, and right about now that "man on the street" pun is clicking.  Go ahead, giggle (or groan).

Anyway - the point is Mater drives backwards (at high speeds and making crazy sharp turns that terrify Lightening McQueen) with confidence, because he knows where he's been.  That only works because he knows the territory so well; he's driven down the same road so many times, he knows what's coming based on what he's passed.  Bernanke doesn't have the luxury of a consistent road, so he can only use what's passed as a clue, not a road marker (good God I love these car puns).

I contend that we, chronic patients, are somewhere between Bernanke and Mater. 

Photos found here and here.

Like Bernanke, we are faced with choices - of all magnitudes: if I shower in the morning will I have the energy to get dressed; should I park near the door now because when I leave I'll be exhausted; can I afford a cut in hours to accomodate my medical needs - and have no reliable way to predict the future.  Sometimes I feel like my motto is "Plan For Everything - Stick To Nothing" because I have to plan far in advance to 'budget' my energies, but then be completely flexible to an unforeseen drain on them.

But like Mater, many of us have been down certain paths many times before.  It took a while, but I've learned some symptom patterns that indicate what's to come for me.  For instance, I have a very specific sensation in my throat and chest which means bronchitis isn't far behind.  Or, I know 15 minutes of sun exposure without sunscreen (& preferably a hat) will mean up to 36 hours of full-body aches, brain fog, and other types of fall-out - on average.  And yet, I wouldn't dare try to speed willy-nilly down any projected road, because even though I had an experience a dozen times, it could definitely take an unexpected detour the next time.

And so, we land somewhere in the middle.  Between "I have no clue" and "look Ma, no peeking", you'll find a swarm of chronic patients.  We live our lives tentatively, trying to predict and plan but aware that every experience will have it's own twist.  It goes all directions; sometimes instead of my expected Bronchitis I end up with a more mild infection that clears more quickly, but then sometimes a tried-and-true remedy fails to provide relief.  It's all part of the crap shoot.  But ya know, everyone's life is a crap shoot, chronic challenge or not.  No one knows that tomorrow will be what they expected.  We may have less predictability in some areas of our lives, but on the whole I'm not sure we have so much more to deal with but that we have to deal with things more consistently.  Which is pretty ironic, really.  I guess God does have a sense of humor...we'd better start laughing along if we're going to enjoy this ride:)
Did you catch it?  One last car/road/ride joke?  Aw come on, it wasn't THAT bad.....

Take Me Out to the Ball Game, Take Me Out to the Crowd...Buy Me Some Water and a Great Big Hat...

Shawn and I dedicated Saturday as our day to ourselves for this holiday weekend.  Our requirements for what to do were simple - inexpensive and outside.  Turns out one of the Phillies minor league teams, the Reading Phillies, had a home game that evening with a fireworks show afterward.  Perfect!  

Being a blog about living with chronic illnesses, of course, I have to share the Sjoggie twists on the day's festivities.  I want to say upfront, I'm actually not bothered by any of them.  Honestly, they weren't problems, and for the most part are things 'average' people should be doing too.  Some even strike me as funny.  Not every accommodation has to be a big deal, people:)

Reading is an hour and half from us, give or take, which meant a mini road trip.  Fortunately in my car that isn't a problem, I can adjust the tilt of the actual seat (like, the part you put your butt on) so it doesn't hurt my back.  I also wanted to take Frankie (my Sonata...get it?  Frank?  Sonata?  Yeah yeah no one else thinks it's funny either) out on the highway, as it's been a while.  At the stadium I noticed something interesting - they had a LOT of handicapped spots.  Like, a couple dozen or so, at least that I saw on one side of the building.  Maybe people with disabilities like to come to the small stadium or something. 

We got there pretty early and the sun was pretty intense, so being a good little Sjoggie I put on my sunscreen.  I used to skip sunscreen, complaining that it took too long to apply, left my hands slippery, etc, but a few years ago I finally realized that was silly.  It only takes a moment to apply, my hands are only slippery for a minute, and not being sick later is way more valuable. 

Even with sunscreen and my hat (yes, risking hat hair), it was a little too much time in direct sun, so we perused team photos & plaques under one of the seat sections, then returned to our sunny seats for the start of the game.  After a little while Shawn went for another round of drinks, and brought me back a giant bottle of water.  He said we were in the sun and I needed it; he's a good boy.  I actually drank it all...I was a good girl:) 

Naturally, the stadium had those giant lights for keeping things just as bright after the sun set, so I had my sunglasses on the whole time.  However, they turned the lights off for the fireworks so I took off the glasses...then put them back on.  My eyes have been even more sensitive and painful than usual for the past few days, and I actually couldn't look at the fireworks without them!  For some reason, this struck me as pretty funny.  I have to think if anyone had noticed me wearing my sunglasses at 10pm in a darkened stadium they would have been very confused.  Shawn looked at me at the end of the show and started laughing.  Hey, a Sjoggie's gotta do what a Sjoggie's gotta do!

After the game we were both craving ice cream, so we decided to stop at a diner.  By then my ever-present cheese + salt craving set in so we shared a cheese quesedilla, then a banana split.  I don't know what came over us but we powered through it in no time - we were seated, ordered, ate everything, paid, and were out in about half an hour.  You can see the destruction of our sundae below. 

Happy Independence Day, everybody, I hope you had as much fun LIVING with your chronic challenges as I did.  We've gotta grab a few laughs whenever we can, ladies and gents, and I hope you yucked it up!

Our beautiful banana split:

The aftermath, about 10 minutes later:



Guest Post: Komen's Wild Ride

If there's one thing I appreciate in a blogger, it's a stand-out voice.  There are a few qualities that I think make an excellent health activism blogger: 1. Passion - kind of obvious, but never to be underestimated!  2. Strong - this is also obvious, though perhaps harder to qualify...strength could be through how the writer 'speaks' or by virtue of what he/she lives.  3. Balanced - I think this can be the hardest to do.  I may like a number of bloggers, but the ones I keep coming back to read strike a balance between ups and downs.  Writers who only cover problems, pitfalls, and setback; who only discuss what's wrong with society and why life with their condition sucks wear me out.  Naturally those who are rainbows & glitter are a bit easier on the spirit, but eventually that just doesn't feel true-to-life.

Today's guest blogger really does it all...and usually more than once.  Alicia Staley is a 3-time cancer survivor (Hodgkin's in ther 20's, then 2 bouts of breast cancer), engineer, and founder of The Staley Foundation...not to mention activist extrordinaire (you can read her blog here).  Having interacted with Alicia on Facebook, Twitter, and WEGO Health, I even had the chance to meet her when we were on a panel together (with Amy Gurowitz) for the Social Media & Health Pharma conference. 

Those of you who follow me on Facebook or Twitter may have picked up on my ambivilance toward Komen for the Cure recently.  But of all the articles & pieces I've posted about, few really hit the mark so well as the voice Alicia used in her post on WEGO today.  Alicia wrote basically an open letter to Komen, calling them out on their behavior, pointing to the biggest problems, and issuing one last call for Komen to mend their ways.  No one could say it quite like Alicia.

Dear Susan G. Komen for the Cure:

Stop. Just stop. I've reached the point where I'm embarrassed by you and all your branding efforts for the cure. I see tons of pink ribbons, plastered on everything from shampoo to lawn mowers and cat litter.  I'm beyond aware.  I'm frustrated.  I can no longer justify your breast cancer awareness campaigns to my friends that want to know why there's no cure.  I've received more emails in the past week over at Awesome Cancer Survivor expressing exasperation at the breast cancer community than I care to count.  As a breast cancer survivor, I shouldn't have to justify your behaviors. 

When you launched your partnership with Kentucky Fried Chicken  (aka "Buckets for the Cure"), I excused your lapse of judgment.  I assumed it was a temporary slip, and you'd eventually focus your energies back on partnerships and alliances that aligned more closely with your stated goal of "For the Cure."  You trumpeted the partnership, declaring KFC would make the largest one time donation of an estimated $8 million to Komen. The ultimate goal of the $8 million donation never materialized.  According to your own reports, you only took in $4.2 million.  Not pocket change by any stretch of the imagination, but only about half of what you were looking to grab. You are the self-proclaimed leader of the breast cancer community.  Where is your leadership? 

When you went after the little guys, suing everyone and anything using the phrase "for the cure", I lost all respect for you.  You attacked the very people that are desperately seeking a cure and trying to find some solace in the face of this devastating disease.  Instead of reaching out your hand to help lift these groups up, you smacked them down with frivolous lawsuits.  Exactly how is "Grandmas for the Cure" hurting your multi-million dollar campaign and branding efforts? These small charities, working for a cure, picked up the baton you dropped long ago.  You are the self-proclaimed leader of the breast cancer community.  Where is your leadership?  Where is your compassion?

When you launched a perfume, I realized your days as a leading breast cancer charity were dwindling.  A perfume named "Promise Me?"  Why?  Do you know that chemical sensitivities are heightened while undergoing chemotherapy?  To this day, almost 18 years after my last chemo, I still have trouble with certain smells and tastes.  I can't imagine the thought of wearing a perfume that reminds me, everyday, of the lack of progress made in the fight against breast cancer.  Were you expecting every woman fighting breast cancer to spritz on some "Promise Me" before heading out to the cancer center?  You are the self-proclaimed leader of the breast cancer community.  Where is your leadership?  Where is your compassion? Where is your creativity?

And now this: Roller Coasters for the Cure.  Did someone run this one by corporate? A Komen affiliate has co-opted the pink ribbon to plaster on a roller coaster ride.  According to the press release: "Wild Waves challenges all U.S. theme parks to paint their Skycoasters pink to raise awareness for breast cancer." Save the paint. Remind me again - for what exactly are you raising awareness?  We're all aware.  It's time to move beyond awareness.  You are the self-proclaimed leader of the breast cancer community.  Where is your leadership?  Where is your compassion? Where is your creativity? Where is your self-respect?

The backlash is here.  The Komen Bandits are organizing.  Count me in as a bandit. I'll carry the torch for Joan, Jeannie, Susan, Martha, Mary, and Lisa.  These women were dear friends that died from metastatic breast cancer.  I'm asking you to take a leadership role in addressing the lack of progress made for those facing the metastatic aspects of this disease.  The once mighty Pink Ribbon, used all these years to herald the importance of breast cancer awareness, is quickly becoming the poster child for cause marketing overload.  Don't make this your legacy and drag the rest of the breast cancer community down with you.

You've done a great job of making us all aware of breast cancer.  Please take those next steps to help those that continue to suffer.  Leaders don't rest on their laurels.  They keep moving, they keep innovating. They don't go back and rehash the same products and promotions over and over again.  We get it: You could sell a pink ribbon popsicle to a woman in white gloves.  But, please know, your days of King of the Mountain won't last long if you don't address the groundswell of criticism directed at you.  Wake up, the bandits are coming.  And we're not happy.

Promise me that metastatic disease will become a priority for your organization.
Promise me that you'll visit the nearest cancer center and sit with those women going through treatment right now.  It's not a pretty sight.  Frustration is alive and well there, if not much anything else.
Promise me that you'll remember why you started this fight in the first place.

Promise me that you'll take these next steps or get out of the way.

Speaking For Myself ... Whoever That May Be

Photo found here.

I am not my illness.  I am a wife, a daughter, & a granddaughter; an auditor, a leader, & an activist; a lector, an extraordinary minister of Holy Communion, & a youth minister.  I live to laugh, cry at the drop of a hat, and talk to my pug as though she were human.  I love to buy shoes, am fascinated by tiaras, and think it’s fun to impress with acts of physical strength.  I plan to be a mother, a community leader, & to make a difference in this world.

I am not my illness.  But neither am I the person I was before diagnosis.  I still love shoes – but the ones I choose accommodate my tendon and joint problems.  The strength I would show off is gone – now even washing dishes or carrying bags is a problem.  My illnesses shape my physical self, as well as my goals in life because of what I go through.  I was a leader as far back as I can remember, but now I also lead other patients and disability activism groups.  I still plan to be a mother, community leader, & make a difference.

The affirmations we hear in our communities are legitimate, but I have concerns about their accuracy.  The two I hear most are "I am not my illness" and "my illness does not define me", and they evoke an emotional response for me.  I am only speaking for myself - I can fathom many reasons why (and how) both statements may be spot-on for a lot of people.  But while I believe I am not my illness...I do think my illness defines me, or at least many things about me.  And that that's ok.

I am not my illness, but you must meet Sjogren's to have met me. 
For one thing, you simply cannot talk to me for more than a few minutes without me bringing it up.  So by default, you will meet it - I will introduce you. 
Stay by me a little longer, and you'll learn about its personality - when it wakes up on the wrong side of the bed, I have trouble moving.  When it has a mood swing, I go from all-in to last-leg.  When its feeling benevolent, I get in a long walk. 
Then, if you're really loyal / curious / masochistic, you can stick around through the flares and really get up close & personal.  That's when you can make friends with greasy hair & all-day pajamas because I can't handle the exertion to take a shower, or relieve Shawn of his usual duties as butler because I can't get up for a drink/snack/tissue/medicine/ToSaveMyLife. 
And Sjogren's is just one member of the entourage; "I'm freezing" and "I stood up and am going to pass out" are just a few calling cards left by Dysautonomia.  "Please don't so much as put your finger on my shoulder" (Fibromyalgia) also likes to hang around. 

I am not my illness, but I am at times exhausted, mentally foggy, achy, weak, light-headed, and yes even scared.  Those aren't my "normal" traits.  I prefer to over-schedule, be quick to process information, feel strength coursing through my body, horse around, and take on any challenge I can find.  How could I say I am not defined by my illness?  To me, that would be as silly as saying I'm not defined by my race, religion, or gender.

When we say "my illness does not define me", I wonder if what we really mean - if the message we're really trying to send ourselves - is "my illness does not confine me".  That makes a lot of sense to me.  One of the things I fear most in life is becoming confined, restricted, or controlled.  Sitting in a doctor's office at 15 being told I shouldn't continue with the thing that gave me the greatest joy & pride to that point, Color Guard, that's exactly how I felt.  Maybe because I was so young I hit a good mix of rebellious and malleable; I didn't passively accept anything, but also learned over the years to pick and choose my battles.  That's a conversation for another day - but my point is I do not believe I am confined by my illness; I am still in charge, still do what I want, still control my future.  I just do it acknowleding an influencing factor.

I am not my illness.  I am not confined by my illness.  Sometimes, I am defined by my illness.  I am an interesting person, active in the world around me, & happy with most things about my life.  I have my soul mate, a career I love, & a future to look forward to.  I am a Sjoggie, and that's ok with me.