In the aftermath of changing medications for my disease, I am crashing at odd times of the day. Yesterday, which was Sunday, I went to a church. It was a fine congregation and we even had a holy rapper. And because the older folks of the congregation had "slow ears," his words, he spoke the words afterwards. Even to us, the older folks who are not into rap, enjoyed the performance.
After the experience, my husband bundled me into the car and brought me home because I was white and trembling. In minutes I was in my bed and as my head hit the pillow, according to him, I was snoring.
Unfortunately sleeping is not always resting. I woke up ready to sleep again. Can I tell you a little about the disease? I have Wegener's Granulomatosis, a Vasculitis disease. It means that if my immune system is not controlled with chemo and prednisone, the blood vessels will inflame and there will be no blood flow going to the organs. In my case, the first organs affected are the kidneys.
It is extremely dangerous and usually fatal without medication.
The meds are not lightweight either. If I am on certain chemos (cytoxan) too long, I can get cancer. Recently I was on imuran for six plus years. I am now too toxic on this drug and will soon be changing to another one - Cellcept or the generic. And that is the problem, I get toxic. And another problem is I wake up in the middle of sleep with the most horrendous leg cramps.
My rest is not gentle. I need the rest more than anyone else because with my immune system suppressed I have no "bounce back" from anything including stress. My only recourse is a nap.
I asked my doctor if this would change at all once I healed. I got a no. It is not the disease that is taking away my "bounce back." It is the meds. And without the meds, I would flare. And if I flared (flare is when the disease becomes active again) I could die.
Not a word I like to hear - die. So I take naps and rest. And I hope I have the time to do the things I want to do most - write.
You can find other essays on Rest at Sunday Scribblings.
8 comments:
You describe the difficulties of living with this particularly difficult disease with such candour. I am so pleased you are able to write about it; perhaps your goals in your recovery are to live, love and write. What better ones to have!
Thank you oldegg. ;-)
Before I turned 41, I had no idea life could be so hard or so simple.
Thanks for commenting.
Cyn
You have my sympathy. I have several ailments, the medications for which often interfere with one another. I don't have the courage you have to describe them so vividly. I would much rather ascribe them my symptoms to just old age - which might even be true.
Thank you for your honesty - and you are a vivid writer.
Hi Granny,
And thanks for your comments. I can't blame this one old age since it all started when I was 41. ;-)
But when I do have strange symptoms that I don't know where they are coming from, I blame it on medications.
Thanks for the compliment.
Cyn
That sounds incredibly frustrating. Well, at least you have a husband to bundle you up, and hopefully writing is a healing outlet.
It does help to have a hubby that tries to keep me in good health. And, if I didn't write, I would probably lose my humor.
;-) Cyn
From what you're saying, it does sound utterly draining.
TY William,
Yea - I went out for a few hours yesterday, breakfast and a visit, and then I had a three hour nap. I can tell when I am tired because my world goes from color to gray.
Cyn
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