July 26, 2011

Julia's a Crackpot (But So Am I)

I always feel better knowing I'm in good company. I, too, am a crackpot...but Julia of Reasonably-Well put a beautiful spin on it. A quick read that will simply make you smile:) Have a good day!

I'm A Crackpot

July 23, 2011

Happy World Sjogren's Day!

World Sjogren's Day commemorates the birthday of Dr. Henrik Sjogren, who identified Sjogren's Syndrome in 1933. 

Sjogren's Syndrome is the 2nd most common autoimmune disease in the United States, affecting an estimated 4 million people in this country alone.  Sjogren's is synonymous with "dry eyes and dry mouth", but is so much more.  Yes, in Sjogren's the patient's body attacks the moisture producing glands and connective tissue which causes these common symptoms - but it doesn't end there.  We have moist tissue all throughout our bodies, and all our body's systems are dependant on these tissues.  Here is a poster put out by the Sjogren's Syndrome Foundation about just some of the possible effects this disease can have on the whole body:

A few other Sjogren's facts for you:
  • 9 out of 10 Sjogren's patients are women (though there are men out there)
  • A Sjogren's patient is 44 times more likely than an average person to develop Lymphoma
  • The typical Sjogren's patient will need about 50 times more dental work in his/her lifetime than the average person - and I think I've mentioned how extensive mine has been already
  • The typical patient being diagnosed is a woman in her 40s, but it can be found in both genders at any age (I was 15 when I was diagnosed)
  • On average, it takes 6.5 years to get a diagnosis of Sjogren's Syndrome
  • Sjogren's patients often experience 'flares' and 'brain fog', similar to many other diseases including Fibromyalgia, Lupus, MS, RA, and many more
  • A patient may have Primary Sjogrens (it is their only diagnosis) or Secondary Sjogren's (they have a comorbid conditions, such as those listed above)
  • There are limited treatment options, which focus on minimizing symptoms and slowing disease progression
  • There is no cure.
There are 3 things you can do today to spread awareness, encourage potential patients to seek diagnosis, and support research:
1. Learn something (www.sjogrens.org)
2. Teach someone (www.defythedry.com)
3. Sign up for Sips! (http://www.facebook.com/event.php?eid=183619591699575)

Thank you for reading this today and sharing it with everyone you know.  There may be 4 million Americans living with Sjogren's Syndrome - but most are not diagnosed!  They may not know there are resources to help them with their challenges - you may be the key to a better life for them.  Have a great weekend, and stay hydrated!

July 15, 2011

May I See Your Resume, Doctor?

My husband says I should wear a sign that says advocate...with a pair of devil horns.  It seems I always have the opposing viewpoint in a discussion...I say it's because I think all the way around a scenario.  Tomayto, tomahto.

Regardless, I do ultimately tend to speak for the unpopular opinion...and I'm about to do it again.

Image found here...and I think you can buy it, too!

I am a HUGE supporter of the educated patient.  I very firmly believe that the best thing a patient can do for him or herself and their doctor is to learn about their condition(s), risks, treatments, etc.  And, I hear stories every single day (literally) about doctors who obviously didn't know their head from a hole in the ground based on the absurd, uneducated, or downright negligent things they've said. 

It needs to be said: we need to trust our doctors.  They know things we don't.

Hang on, put down your pitchforks and hold back the angry mob, hear me out (ha, haha, a devil joke, get it?  I don't think I can write a post without a pun these days).

Image found here.  This one's not for sale.

I know the right (nay, need) for a patient to think independently and not blindly rely on the initials MD or DO to lead them is a huge rallying point, and for good reason.  But ultimately, we see doctors for guidance - or at least we should.  I don't go to doctors just because they have the legal right to order my prescriptions, I see them because I need someone more knowledgeable than me to take responsibility for keeping me in tact.

We've all encountered the doctors we're pretty sure graduated medical school by a fluke in the system which gave everyone passing grades; the ones who didn't believe our symptoms were real; the ones who told us things like "live with it", "it's part of aging", or "there's nothing to be done".  But I suspect the solution isn't to write off every doctor as a hack.

Instead of resigning ourselves to ignorant doctors and taking the responsibility for everything on ourselves, maybe we should learn how to recognize a good doctor from a bad one!

My rheumatologist (who I consider to be the captain of my health ship) has my trust.  There are certain things I believe just because she's told me so - but boy did it take a lot for me to trust her that much.  I can't research everything afterall.  Since I've found someone I'm that comfortable relying on, I thought I'd share some of the ways I go about finding, evaluating, and staying with a good doctor.

Finding a GOOD DOCTOR:
1. Get referrals - but dig deeper.
Referrals are great.  I'd MUCH rather spend my limited time & money seeing someone that has been recommended to me than a complete shot-in-the-dark stranger.  But just because someone does (or doesn't) like a doctor doesn't mean you're going to feel the same way.  Getting a name is great...but ask some follow up questions: why does your friend like this doctor?  What does this doctor do for them that others don't?  Are there any drawbacks or negatives to this doctor that they choose to accept in order to get the positives?  This will help you consider if this doctor will work for YOU and YOUR life.  The same goes for online rating & review sites.

2. Sometimes those who CAN do, teach.
The first places I turn when I need a new doctor are my local teaching hospitals.  While not a guarantee, I find many doctors associated with these hospitals have a few great traits: they tend to be better at explaining things, they're more receptive to self-educated patients, and they tend to have knowledge of the most recent developments (heck, sometimes they're even part of them)!  Living near Philly, I know I have a surplus of these institutions at my disposal, but sometimes doctors at these facilities will also have locations that may be closer to you.

Evaluating a GOOD DOCTOR:
3. Get answers.
Please note - I didn't say "ask questions", I said "get answers".  We all ask questions, but we don't all get answers to them from our medical team.  One of my favorite examples of what I think a good doctor should be able to do is answer "how will this medication help me?".  Things that do NOT count as answers:
*It will make you feel better (this is arguably the worst answer)
*It reduces inflamation (sounds good...but you end up with no more information or understanding than you started with)
*The hydrosomethingdohicky combines with the gobbletygook via the Hokiepokie Reaction thereby minimizing the inflamatory reaction you're experiencing (this person is either being condescending because you dared to question them, or may just be completely out of touch with reality - neither is good)

An example of a good answer might be: "This medicine combines with a chemical already in your system, which will interfere with the Hokiepokie Reaction that causes you to experience inflamation.  By interupting the Reaction, you will have less inflamation overall".  This answer isn't attempting to talk over your head in 'doctorese', but actually gives you information on the mechanism at play.  Think of it this way, if you can't explain to your friend why you're taking something and how it actually helps, your doctor isn't 'answering' your questions.  (BUT - to be fair, you may never have really asked or driven at a better answer.  Give your doctor a fair chance by making sure you're asking questions and letting them know if you still don't understand.)

4. R-E-S-P-E-C-T.
A doctor, like anyone else you turn to for guidance in your life, should help you be realistic but still true to your priorities.  For people with many chronic conditions, this can be trickier than it seems.  One way I knew my rheumie was a winner was during a visit while I was in college - we were discussing my weight and certain musculoskeletal symptoms, and instead of telling me to find a way to work out she said "well I know your schedule isn't going to change until school's over so let's figure out what to do now".  I think I actually did a double-take.  All other doctors (before and since) basically look over their glasses and give me that "now child, we know you're just being lazy" stare while telling me to find a way to work out somehow.  This doctor acknowledged the priorities I had in my life at that point (certain organizations, classes, part-time job, etc) and wanted to work within that, at least for a while.  Now that my schedule is indicative of a more lasting lifestyle, she does encourage some changes when necessary - trying to find more downtime (ha, haha, hahahahaha), actually finding ways to incorporate some reasonable amounts of exercise, and so on - but she knows if her advice doesn't jive with my life, I won't listen to it anyway.  One question she asks at every single visit is how my marriage & husband are doing...now that's a doctor who's concerned with my LIFE, not just my Sjogren's.

Staying with a GOOD DOCTOR:
5. Determining your limits.
There's a world reknowned Sjogren's specialist in my backyard here in Philly - I was actually a patient for a brief time.  Unfortunately, there's a group of us who used to see this doctor but eventually left the practice because of the office staff.  My experience included weeks of unanswered messages, undelivered test results, even unfilled prescription requests, and I've been told I'm in good company.  It wasn't the doctor, but the front line of people a patient encounters are that inept, and it hurts the practice.  My current doctor's staff isn't perfect, I had some issues again with slow response times, messages that weren't passed on, and scheduling issues.  I also go to every appointment prepared to wait an hour or more for my visit if I'm not first that day.  So why am I willing to deal with staff problems and long wait times, but I left the previous doctor for similar reasons?  I have determined my limits and what is most valuable to me.

Personally, I value my doctor's care enough to cope with the frustrations I encounter.  I'm willing to wait for my appointment well past my scheduled time because I know I'll get a thorough exam and all my questions answered when it's my turn in the room.  The communication problems aren't as bad as at the former doctor's office, and I know that I can email my doctor directly if I have to and that once she gets my message she'll give it the appropriate attention.  While I'd prefer a perfect office to go with my perfect doctor, I'm ok with this situation.  Just like I expect my doctor to respect my priorities and lifestyle, I have to accept not everything in her office will be ideal.

It's funny - to find, evaluate, and accept a Good Doctor, we have to remember to view them as humans with imperfections.  Just like other relationships in our lives, the one we have with our doctors should be filled with acceptance and respect.  This way, we all come out ahead.

July 10, 2011

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:)

July 8, 2011

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.....

July 4, 2011

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: