Up (Or Should That Be Down?) Date

May 30, 2008 at 2:33 pm (Uncategorized)

Pardon my absence from the blogosphere. I’ve been sick. I’ve been tired. I’ve been sick and tired. The novelty of this has worn off for me—and sometimes, I worry, for you, as well. I want to post a happy entry. I want to bring you news of positive changes. But, it is still just me, sick and tired.

There is, however, some medical news. After months of griping about my sweat attacks, mood swings, and other issues that I will delicately categorize as “related to my reproductive functioning,” my doctor rechecked various hormone levels and found that I had virtually no estrogen in my body and that my pituitary gland had stopped producing the hormone. At 36, I am officially in menopause. As if it wasn’t news enough that I have less estrogen than an eighty-year old woman who has gone off hormone replacement therapy, my doctors have begun to fret that the source of the estrogen problem isn’t simply my long-term use of prednisone, but rather that the sarcoidosis has begun to nibble away at my pituitary gland. Why not? It is, after all, the pituitary is just a quick hop, skip, and jump from my cranial nerves, where the disease is already well-established. And one thing my case of sarcoidosis has made clear to me is that it has boots made for walking and it likes to use them.

I sleep about thirteen hours a day and awake still exhausted. After having another sleep study a couple of weeks ago, I learned that not only do I have severe sleep apnea (which I personally attribute to becoming fat and developing loathsome rings of flesh—which I affectionately refer to as “my wretched goiter”—around my neck), but I also have episodes of non-apnea related hypoxia. OK, let me try that in English. Sleep apnea occurs when the soft tissues of your airway collapse as you sleep; this means you don’t get enough air (and thus oxygen). The result is crummy sleep, along with extra strain on your heart, which has to pump harder for those interludes of less oxygen that take place before your brain rouses you from sleep to resume breathing. To treat sleep apnea, you need to use a machine that gently (or not so gently, in my case) blows air down that collapsible airway to make sure it stays open. I already knew I had sleep apnea; in fact, I own one of the machines. However, I was instructed by my doctors to discontinue using it because they felt it was contributing to ongoing sinus infections, to which I am doubly susceptible because I am so immune compromised.

But this latest sleep study revealed that I also have long periods in which my airway stays open (i.e. non-apnea) but my oxygen levels still drop below 70 percent. I believe the clinical term for this is “not a good thing.” Oxygen saturation levels below 90 percent are considered dangerous. So now I am using nighttime oxygen, while awaiting an additional sleep study, in which they will outfit me with the latest and best sleep apnea machine and accompanying mask and oxygen to see how I do. I had hoped the oxygen at night would help me feel less tired. It doesn’t. But I do have my very own compressor next to my bed and twenty-five feet of neon green tubing. As much as I love my compressor and its constant thrumming, I’d like to know why I’m experiencing oxygen desaturation—not only at night, but also during periods of mild exertion. As with my pituitary dysfunction, my doctors speculate that my sarcoidosis is busy in my lung tissue and that this is the cause of my non-apnea breathing woes.

Shall I go on? Well, it’s my blog, so I will.  I continue to limp because of the (theoretically) sarcoidosis-related bone issues in my foot. A trip to the foot-specializing orthopedist revealed that the sarcoidosis lesion is no longer present (or at least visible) on the bone in my foot. Which might sound like good news, but the entire area still remains swollen and sore. I suppose I should be grateful that walking around the house uses up all my oxygen, because that’s about all the exercise I can do without causing my foot to balloon and throb.  Even though the contrast between my highly mobile disease and my own now pretty fixed in place existence can be a little hard to take. I used to be a world traveler, but the illness’ impact on my brain means that driving across town gives me vertigo.

Sometimes I envision my sarcoidosis as a restless little Napoleon, always on the lookout for new organs to conquer. Once it has toyed with my liver or my heart, it grows bored. I can almost feel it impatiently tapping its fingers on the table, as it eyes the Gray’s Anatomy map of my body and plots its next campaign, maneuvering between the batteries of Remicade and Imuran and prednisone I try to lay in its path. It has kept its military bases in my liver and on cranial nerve number eight (the source of my vertigo and perpetual headache), but otherwise sends its troops where it will. Where’s a frigid Russian winter or a Lord Wellington when I need one? Switching centuries (if not metaphors, entirely), I feel like one of those 1930s Ethiopians shaking my spear at the Italian bombers flying above me.

So, there’s my update. Sarcoidosis here, sarcoidosis there, sarcoidosis everywhere.

4 Comments

  1. Barb said,

    Rebecca,

    Drat those damned battles and bless the battle field body. I appreciate that you put up with the dizzy headache that you probably incurred by writing this down date. Sending prayers of peace talks and cease fire agreements very soon.

    Hang in there funky white girl…

  2. Sharon said,

    Hi Rebecca,

    I’m sorry that your illness is causing all these old & new troubles. I’m stuck at home too – mostly housebound for the last couple of years. I have CVID (a primary immune deficiency) and SLE (Lupus) which were both diagnosed in 2006 after many years of illness. And a few other conditions that developed over the years (including sleep apnea – though not as serious as yours.) And recently have just found out that my adrenal glands are not functioning properly. This is probably another autoimmune disease (Adisson’s), – not sure, still at the beginning of the diagnostic process.

    I came across your blog a few weeks ago. I’m glad you’re blogging again, I know it must be hard considering how sick you are. I hope you have some good things happen soon & that the war quiets down.

    Sharon

  3. Dani said,

    re: pituitary gland
    I have sarcoidosis, aspergers syndrome, EBV and staph. Last week I was fitted with a SOMA (Splint Orthodontic Myofunctional Appliance) to treat my jaw alignment problems. The SOMA has helped relieve different types of chronic pain, respiratory problems, TMD, neck and spine problems, and immune system conditions. There is a hypothetical possibility that the Pituitary gland operates more normally when the cranium is widened. and the pituitary thyroid adrenal axis works better. In addition the airway space is freed, allowing improvement in swallowing, speech, eating, breathing, and sleeping. So, I am slowly fixing my problems with TCM, diet, herbs and SOMA etc. I am trying to avoid steroids etc. Kind regards and best wishes.

  4. Alicia said,

    Despite all the bad news, I was still LOLing at the “wretched goiter,” frigid Russian winters, and Lord Wellington bits. Your humor is the best tool in the tool box!

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