August 11, 2007 at 9:53 am (Uncategorized)

I apologize for my long absence.  My silence hasn’t solely stemmed from my habit of avoiding reality by not writing (or thinking or talking) about it.  There’s been a lot happening on my street in chronic town.

I am typing this in Boston.  My routine appointments with my sarcoidosis specialists in Philadelphia became suddenly less routine when I contracted what seemed like an incurable sinus infection at home in Montana.  Suddenly, all the various physicians that meddle in my care found it utterly necessary that I see a sinus specialist right away—like yesterday.  The appointments lined up in such a way that it made sense to travel East earlier.  We’ve decamped to my husband Jay’s childhood home in Boston between Philadelphia appointments and testing.  We’re hoping to sneak in some beach vacation, although my three-year old son, Andrew, has contracted a bronchial version of my intractable infection, and, given his wracking cough, we’ll stay in the civilized suburbs until he’s well.

I can’t say that I minded leaving home for three weeks.  Our entire state seemed to be on fire—literally.  40,000-odd acres of forest down the highway from our home were ablaze, and every new day brought news of yet another fire igniting somewhere in Montana.  I’ve survived bad fire seasons before.  In 2000, we awoke most summer mornings to find a blanket of ash on our skylight window and our car windshield.  But we kept on plugging away at our daily routines then.  Idiot that I was, I even continued training for bike races by going for sixty mile rides in virtually opaque air.  (And I wonder how I got sarcoidosis?)  However, before this year, I’ve never before had to contend with campfire air and particulates in my lungs while simultaneously inflicted with both a chronic pulmonary disease (sarcoidosis) and a chronically busy boy who hates being confined for more than 5.5 minutes (Andrew).  I was a prisoner of our home, and because I was worried about Andrew developing asthma or sarcoidosis or God knows what else from the disgusting air, I made him one too (albeit, a very unwilling one.)   Before my parents and my sister took pity on our sweating and suffering and purchased and installed a window air conditioner, we were braving the visible air and ninety degree temperatures by staying in a hotel.  Then, my friend Leah, who shall have my gratitude forevermore, loaned us her spacious, centrally air-conditioned house when she and her family were out of town.  Without this greater (chilled) real estate, I would have gone completely bonkers.   As it was, I was about 75 percent bonkers when we decided to head east and drown our sorrows in doctors’ appointments.  Somewhat miraculously, my sinuses cleared once we left behind the flying ash and the air that sears lung tissue.

I haven’t met with the crucial doctors yet.  That comes in the next two weeks, when I revisit with the ENT after he looks at some test results, and when I see both my pulmonologist and my cardiologist.  I’m nervous about those appointments.  As far as I’m concerned, my treatment isn’t going smashingly well, and I want to take a hard look at what should come next.  Call me picky, but my sarcoidosis is out of remission, I have high blood sugar from all the prednisone, I have a broken foot because of all the prednisone, and I have no immune system because of all the prednisone and the Remicade.  I know the white coats will urge me to stay the course.  They will probably agree that it’s pretty lousy that sarcoidosis treatments carry such significant side effects—like having your feet break under you and your blood start to resemble cake batter—but that this is all “we” have.  I know I need to ask them tough questions and be prepared to say I’m not happy with my current state of health.  But I also know there’s really nothing left for them to try.  I must negotiate a fine line between seeking more information and understanding about my disease and my prognosis and simply whining and venting about side effects.  I must not lapse into the latter—for both my sake and theirs.  For me, I need to be clear-headed and optimistic (but still remain realistic), and they need to know that I am still a part of this treatment program, no matter how difficult I find it and how much I am seized with doubt.  I don’t want them to toss me aside on the slag heap of chronicity.  I don’t want them to think, or to commiserate to one another, “She’s incurable, and a complainer, too! Get in, and get out.  And don’t waste any new ideas on her.  Just give her the old prednisone.”  I know I’m being silly and paranoid—mostly—but there is some truth to my anxiety.

I’ve got a few days before my next appointment.  This gives me time to come up with a list of talking points to bear with me into doctors’ offices; this gives my sinuses more time to heal; this gives Andrew time to unwind and visit with his grandma; this gives me time to focus on the internal fires ignited by my disease and my worries.  At least these fires don’t leave ash on the windows.


  1. barb said,

    Rebecca..great to “hear” news..still smoky here in Helena, each day I’m grateful you are not home..no offense. A. and I both got the summer cold that turned bronchial..wouldn’t have gotten her through it without antibiotic, guiffinosin (sp) and dextromathorphan…neither causes sleep. Just an idea..I wonder, since you clearly know what you DO NOT want to get from your doc team, would it be helpful to list what you DO want? Sending daily care your way. So glad you are an INFORMED consumer of what we call health “care”. Barb

  2. David said,

    I hope that things will look up eventually. Try a different drug. I have sarcoidosis and unless it is life threatening I’m not taking a thing. And I’m praying it lets up on it’s own. Now I’m scared that my family will get it. Stay positive and follow your gut feelings on your treatment.

    Take care.

  3. JRFoutin said,

    I was given a Sarcoidosis diagnosis days before Christmas in 1999. I did Prednisone for 9 months and then self weaned when it was obvious it only made me sicker and the disease still raged.

    In 2000 there was scant little to find on the net or elsewhere so I could be a better informed consumer, and I was only one of a few in my state that had been diagnosed with this disease. So I just did what I could to survive, believing the commonly told lie that it goes away on its own but wondering why my Dr had said I might need to take Prednisone the rest of my life. Hmmmm.

    Of course, Sarcoidosis does not go away. The ACCESS 2003 study cleared that up but most practitioners seem to have missed the detail snuggled into the charts. Not one, not one of the cohort of the largest multi-bookoo buck study of Sarcoidosis in US history got better, with or without conventional immunosuppression treatments of the day that you and I both have taken. BTW, most of these failure concepts are still used and I can see from your post, the elaborations on immunosuppression that your doctors are experimenting with are not helping much. It might be time to look forward.

    The best option is to become informed and choose for yourself. As one mom to another, I felt you should know about the Marshall Protocol (just add a dot-com for the URL) so you can read, ask questions, and as an informed health care consumer should–choose for yourself.

    I hope the best for you, no matter what you choose–JRFoutin

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