I’m Alive

April 25, 2008 at 3:24 pm (Uncategorized)

It’s been a rough few weeks on my avenue in Chronic Town, and it’s been difficult for me to find the energy to write.

If I could make the healthy world understand only one attribute of living with a chronic illness, I would choose fatigue. Yesterday, I napped for seven hours (yes, that’s 7), woke up long enough to take my evening medications and slept for another eight. And today, I’m exhausted. I slept through a Remicade infusion, fell asleep in the lab at the hospital waiting to get my blood drawn, fell asleep listening to a book on tape. This level of fatigue—this gnawing, persistent, cry from my bones to go to bed and sleep—can last for weeks.  I’m hoping this latest bout of deathly tiredness only persists for a few days.

Partly I’m to blame for the exhaustion. I pushed myself hard to put together a book proposal. I had to work the equivalent of eight-hour days for about two weeks. Sadly, this crushed me, though I am glad to have the proposal done and proud to have been able to produce a 40-page document I can send to agents or editors. I’d really like to turn the meat of this blog into a book, and I needed the proposal to do so.

We had a couple of visitors, and even though I have given up cleaning, cooking, and fussing for guests, it still requires more energy than usual just to be upright for a greater percentage of the day than I usually am.

The real reason for this latest bout of exhaustion, though, is that somehow my sarcoidosis has become active again. How I can have a documented flare whilst receiving the maximum dose of Remicade along with a hefty dose of prednisone is making me a genuine scientific curiosity. I’ve avoided having sarcoidosis involvement in my lungs until now. My once perfect pulmonary function tests aren’t so perfect anymore. I huff and puff walking around the house. My liver tests are a mess, my heart is skittering again, and the large granulomatous lesion on my foot bone is back. I continue to have the headaches and vertigo caused by the neurosarcoidosis. Consequently, my last few days have involved very little besides limping, huffing and puffing, listening to my heart skitter, tilting with vertigo, seeing doctors, and sleeping.

I shouldn’t forget worrying. I spend plenty of time doing that. The White Coat Brigade wants to add a third drug to my immune-suppression mix. It’s called Imuran, and I think it is mostly used to treat organ transplant patients. But it does tamp down another part of my immune system, which is believed to be the source of my disease. I have the prescription, but I haven’t filled it yet. Jay did a preliminary Internet search on Imuran, and one of the potential side effects is cancer, especially when it is mixed with the anti-TNF agents like Remicade I’m taking.

Cancer is a scary word. But, then, so is the thought of sarcoidosis running rampant and a potential lifetime of sleeping eighteen hours day. I’ll do some mental weighing, putter around on the Internet to see what I can learn, and probably end up taking the drug—at least for a few weeks. But, now, I’ve got to go back to bed. I’m so tired.


  1. Paul said,

    Hey rebecca

    Good to see you posting again.

    Hang tight


  2. Barb said,

    Hey..alive is good. Your body fending off the sarc and working with the meds must be like working in the mines all night.. no wonder you are feeling exhaustion. Wish I could lend you some energy. Instead I’ll keep sending care to you and Andrew and Jay.

  3. Alicia said,

    You’re right, I don’t think anyone can understand the fatigue unless they’ve felt it. In my past life, I could never have imagined being so tired for so long, or how much I would have to budget energy and functioning. I’ve been thinking about you!

  4. Nancy said,

    So grateful you are alive and that you found someone to hear your voice. Please know love and prayers come to you three – Nan

  5. Salt said,

    I’ve lived with neurosarcoidosis for the past 8 or 9 years, probably had symptoms since I was 16, but it wasn’t disabling until the end of 2000. I wish I had left behind a blog like this, because its so much to explain to others, and there isn’t much out there for the people that also suffer neurosarc to know what lies ahead.

    I know all too well the difficulty of communicating at times with this. I don’t think I had the mental clarity to leave something like your blog behind for several years. I would type sentences and the words would be the wrong tense, wrong word, or sometimes I would look up and see fyh2fw8h in place of what I wanted to type and it just didn’t make sense at all. It did the same thing to my speech. On top of sounding like I had just drank a fifth of whiskey, I couldn’t get the words out, had a great deal of trouble finding them, finding the right tense of them, and not so great of a chance of being understood by anyone who listened to them.

    Some days (and some days still) it would take away my hearing, or at least ranges of my hearing. I’ve become fairly good at reading lips, but its not a substitute, and the closed captioning on the TV is often humorously bad.

    Its a weird disease. Constantly thirsty, having to get up to use the bathroom like an old man 5 times in the night. Sometimes lose my sense of taste, and my sense of smell. Some days I’m weak, and can’t make it out of bed because I don’t have the muscle strength. Some days I just don’t have enough control over my limbs to make them do what I want them to do, nor the balance to get things done, or my bones hurt from being thinned by steroids. Sometimes a car ride is fine, other times every single bump in the road is torture, pain, nausea, and dizzying. I can’t stand the light, nor the sun: it brings on a headache and ill-temper that I prefer to shield those I love from. The facial pain, where its like a cross between being cut with glass and hit in the nose with a shovel was something else. I couldn’t even kiss my girlfriend without intense agony. The days of not being able to find a good temperature are many, as are the not so fond memories of steroid withdrawal depression, and trying to shed the pounds that 60mg a day of prednisone, or 32mg of methylprednisolone added. Yeah, I DID eat a 16″ Imo’s pizza by myself, and it was good, and I only have myself to blame..and yadda.. But I was hungry, and hungry constantly. …The disease would come back worse after every course of steroids too. So many things that changed, if I rattled off a list of everything I experienced people would think I was a hypochondriac. It doesn’t help that all of the poking and prodding the white coats do, most of it comes back “we don’t know, or can’t find the source of” … But at least its not something *else*. . . 🙂

    Of all the things neurosarcoidosis has brought, some bizarre and some not so; the hardest to deal with of all of them has been the fatigue. Even on the experimental treatment that has given me a lot back (and I don’t recommend it just yet), its the last thing to improve, and some days it doesn’t seem like it has at all. My girlfriend and my family just accepts that sometimes I will sleep for 16, 18, 24, 30 …hours and I wont be available then. She is kind enough to bring me some tea and water, and often will see that I cram down the myriad of pills I have to, or that I eat something at least once a day… but I go right back to bed on those days. I know she misses me, and I know she would love that chance just to talk for awhile. I miss her too. I feel so much better when she comes in and sits down with me and just holds my hand. Even if its just her presence. I know her kids miss me too. When you can sleep through the noise of screaming and playing 5 and 9 year old boys like its nothing, the fatigue is severe.

    I wish you luck on your journey, and I hope they eventually find something to cure all of us of this. The first couple years are very hard, and its easy to get bitter. It takes true talent, faith, and a lot of gratitude to get to a point where you can live fairly well with this stuff. Even after 9 years, I’m not entirely there yet, but I’m a heck of a lot closer than when this started. The white coats don’t know half as much as they think they do, and even less than that when it comes to the rare diseases like this. The only words of wisdom I’m going to impart: If a test wont change the course of treatment, spare yourself the poking and prodding. You have enough on your plate, and we both know this does a lot of things that aren’t in the books. The first few years are terrifying, but after awhile the bizarre things are less so, and less troubling. You know you will survive them, and its just one more weird little thing to add to the pile.

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