Sarcoidosis and Shutdowns


April 7, 2011 by Leah

It’s been a tense few days here, between waiting to see whether the federal budget will pass (there is a direct correlation between this and us having any income after tomorrow) and my brand-spanking-new diagnosis with a scary autoimmune disease.

Actually, the autoimmune disease (sarcoidosis) isn’t particularly scary. I’ve basically been waiting for a diagnosis for months, since I realized my weird skin conditions weren’t going away. My doctors were pretty sure I had some autoimmune problem, they just hadn’t pinpointed the specific culprit. Autoimmune diseases, like many other ailments, seem to fall into that medical category of “we don’t really know what causes them or have any idea how to cure them, but ____ random treatment sometimes helps – a little.” Since I didn’t have any signs or symptoms until I moved to California, and sarcoidosis can be brought on by changes in environment, I am going with my initial self-diagnosis: I’m allergic to Southern California.

For the time being I’ll redouble my efforts to be as healthy as possible, eat only real food, minimize exposure to toxins (though I’m not sure how to deal with the fact that we live in a smog blanket), and hope to heck that my skin is the only organ that will be affected by this disease before it just magically disappears, never to return. I’m even trendy – according to the Foundation for Sarcoidosis Research, April is sarcoidosis awareness month.

I wouldn’t be handling this with nearly this level of equanimity (it’s real this time, unless I’m in shock) if I didn’t have excellent health insurance.

I. Am. So. Lucky.

I married Aaron because I love him, we share the important values and a sense of humor, he’s scary smart, he’ll be an excellent father to our children – you know, all the usual reasons – but his being employed by the federal government is a very nice perk, particularly for the health insurance. (Until recently I would have said something about stability, too.) Sure, he pays a nominal monthly fee for our family coverage and we have $35 copays for office visits (some people at my dermatologist’s office have a $5 copay), but that’s about it. The prescription copay (I take thyroid drugs) is not a lot, particularly when you order generics in bulk. For the sarcoid patches on my legs, I’ll be getting some steroid cream in hopes of being able to wear shorts or skirts in public without scaring small children. Topical steroids have been around forever and therefore are pretty cheap, so I’m not worried there.

I’ve been on the other side of the health insurance equation, too. Well, all my major procedures (the craniotomy and the appendectomy come to mind) happened when I was still on my parents’ insurance, thank GOD, but I’ve had a few trips to the ER and hospitalizations while underinsured to varying degrees (including the one where your insurance is basically bogus). The few years I lacked health insurance between college and landing a professional job were extremely stressful. (In case it’s not obvious by now, I have a colorful medical history. I think it would have been different if I were one of those “young and healthy” types the media talks about.) Health insurance is THE major sticking point when Aaron and I talk about living our dream of buying a small farm and living off the land. One hospitalization could mean losing years’ worth of work.

I think last year’s health insurance bill was great for several people (particularly people in their early 20s whose parents have good insurance), but it wasn’t good enough. Can you imagine how much creativity would be unleashed in this country if we all either had good health coverage independent of our employment situations, or could rest assured that medical procedures were priced economically and could therefore be afforded by individuals?

Whatever. It’s not like we’re going to see any change of that kind of magnitude when Congress can’t even seem to pass a budget. If the budget doesn’t get passed, non-essential personnel neither report for work nor get paid on Monday. The VA central office keeps changing its mind about who, exactly, are the “essential personnel,” but we definitely know Aaron is not one of them. Never mind the fact that this project they are working on has already been delayed by shyster contractors and that the overarching goal is to vastly improve medical services for veterans. I’m appalled by the entire situation.

During the last federal furloughs in recent memory, furloughed employees ended up receiving back pay for the time they didn’t work. Aaron wouldn’t mind being paid to catch up on his Russian Harry Potter books, but we’d be foolish to count our chickens before they’re hatched. Plus, though the two of us would benefit from such a situation, it’s a terrible use of government time and money. I guess for the time being, all we can do is keep calm and carry on.


3 thoughts on “Sarcoidosis and Shutdowns

  1. Megan says:

    As the government has stated that people whose jobs are to protect life and property, you make an excellent argument for why my brother should continue to work if and when the government shuts down – while he may not immediately be doing so, building a hospital IS protecting life… Too bad the government is only capable of thinking in the short term!
    Interesting tidbit – the day the new insurance extensions went into effect was the day after my 23rd birthday. Fortunately nothing terrible happened the one day that I was without medical insurance in my entire life (thanks, Dr. Dad!). xoxo

  2. gia says:

    I feel your pain- literally with medical stuff. I’ve had hip pain for about a year, and recently so bad I can barely walk around the grocery store without leaving early bcs. it hurts. Anyway, the doctor doesn’t really have an answer either, and she thought autoimmune for me too. Maybe it is to teach us patience and to take everything in stride (no pun intended), even pain, and health issues.. (and work issues). Maybe Aaron can file for unemployment and get a little more money. Good luck! Breathe.

  3. Aubrey Clark says:

    This budget ‘crisis’ is ridiculous and childish. Undereducated members of congress with no clear understanding of the the proper role of government have confused being fiscally responsible with being fiscally conservative. Their concerns about the deficit and national debt are feigned, a fact made abundantly clear by their unwillingness to address all aspects of the federal budget, not just the politically expedient ones. Attacking foreign aid (<1% of the budget), the EPA and NPR only elucidates the sheer partisanship at work in the GOP.

    As for last year's health care bills, it is a dirty shame that a public option was never even scored by the CBO, even though it could have avoided filibuster and passed under the budget reconciliation process. Despite claiming to be strong supporters of small business (and even big business) both caucuses quietly buried the one solution which might have relieved the financial burden that rising insurance costs have placed upon American business. When US companies outsource, they don't just head over to India or Mexico, they move to the UK and France as well; wages are more expensive, but the health care is free.

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