Saturday, May 01, 2004

End of the road... 

The fatigue is crushing me. I cannot get out from under it. Until about six months ago, I always had something to blame the fatigue on, like not enough sleep, too much activity, etc. And even if I woke up exhausted, I could usually shake it off somewhat during the course of the day. But now it is my constant companion, even if I have gotten ten hours of good sleep and haven't overextended myself in any way. I'll get up, take my morning meds, disassemble the humidifier, and by the time I head downstairs, I'm already starting to tire again. Just cooking a meal exhausts me, but so does eating out. You know it's bad when you're too tired to brush your teeth.

This is particularly frustrating because I've gotten nearly every other aspect of my illness fairly under control. I was so close to being functional. I've managed to get my pain level down to a very respectable 5 out of 10 on most days without pain meds. I was so sure that when my pain level went down, the fatigue would lessen after a few weeks. That is how it used to work for me. I was so looking forward to being able to do a bit more with less pain, but it isn't working out that way at all. I've conquered celiac, I've conquered the dry eyes and dry mouth of Sjogren's, I've conquered trigger points, I've conquered allergies, I've conquered hypothyroidism, I've conquered adenomyosis. But the fatigue is managing me, not the other way around.

I'm averaging a day a week off sick from work. That's not good when I'm only supposed to take four days a year. I have a very easy job, only 36 hours a week, not too much sitting, standing, walking or typing at any one time. What's ironic is that it isn't the job that's stressing me out so much as the monumental effort it takes just to show up. Part time is not an option at this particular place of employment. It wouldn't help anyway. When I call in sick because I can't get out of bed, I do not feel much better for having stayed in bed. The only reason I get up the next day and return to work is because I'm afraid I'll be discliplined for calling in two days in a row. I did take three weeks off in December, and did feel better for it....for one week after my return. After that, I was back to ground zero. So this is not something I can fix with a vacation. In fact, vacations in their own right are somewhat exhausting....if I travel, I have to rest before and after.

Went to the rheumatologsit yesterday and brought my usual list of symptoms and questions. I tried to keep it abbreviated, but it still filled an entire typewritten page. We did agree to a few things....I'm going to try Vioxx in place of the Bextra (for arthritis caused by Sjogren's) to see if the headaches diminish. Also, I'm going to go back to the ENT to see if my new vertigo attacks are related to the increase in tinnitus (another Sjogren's problem). But as for the fatigue, the rheumatologist could not help me at all. I'm not angry with him....I've read up on the subject and know there are almost no established remedies for Sjogren's fatigue. All he could do was listen to me telling him how many activities I've given up for the sake of saving up every precious drop of energy to get through another work day.

I did ask the rheumy if I could be in a flare....he said in the four years I've been his patient, I've never had a flare, which is true. Instead, since I got sick seven years ago, I've had a slow but progressive decline overall. I've kept up with each new symptom as well as I could, but it's a bit like a bandaid on a hemmorhage at times. The rheumy's opinion is that I have a progressive case of Sjogren's and that it is unlikely that I will wake up tomorrow and find the fatigue gone. I know in my heart he is right.

Basically, I have two choices....go back on steroids, or go on disability. Even though I want like hell to keep working, I think prednisone is not worth trashing my immune system again, so I declined it for now. If I were to take the steroids and feel energized enough to work long-term, there would always be a risk of me catching a co-worker's cold, which in a person with a compromised immune system could result in bronchitis or even pneumonia. And guess what they use to treat pneumonia? Prednisone!

On the other hand, I'm not ready to quit yet. I feel as though if I go on leave because of fatigue, I'm letting the disease win. If it were something serious like lymphoma or organ damage, I'd of course take leave right away. But is disability insurance going to take being tired as a valid claim? I'm only 40 years old with 15 years left on the mortgage. Selling the house would not necessarily be wise because rent here is just as high if not higher than a mortgage. In either case, we cannot get by on Dan's income alone, not with my medical bills. So right now, I've not made a decision. I'm going to hold out for a miracle just a little while longer. I see the rheumy again July 1st. If my situation is no better by then I may ask him to authorize me for FMLA. Sigh.

Pain level: 4
Fatigue level: 9

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