I finally put in a call to my LLMD today about my symptoms and how I've been doing on the plaquenil. She liked how I figured out to take it at suppertime so I can sleep through most of the yuck from it. She also asked if I was tolerating it. And I'm not sure.
Right about now, I've spent most of the last 24 hours in bed. I laid down when Lizzie did in the afternoon and just haven't felt up to being up and responsible for anything. I was up last night to eat supper and that's about it. This morning I spent time in the living room in my chair watching Labyrinth with Lizzie for the first time, and then I went back to lay down. I wasn't feeling well enough to stand in the kitchen long enough to make myself a breakfast shake or get my meds. I got up again for lunch and to go to the bathroom and get drinks. But I've been lying in bed, trying to remain entertained, yet resting. And so far things on the computer have been interesting, but I feel like I need to rest my brain. Sitting up in bed to give my body a different position while typing this entry is exhausting.
Perhaps its time to spend a few days with Grandma. I don't have another appt until Thursday, so Lizzie and I could go up there and she could be entertained and taken care of well, and I could just lie there and rest. And Jared can work and not have to do double duty. I'll have to talk to everyone about that. My only concern is the heat, how poorly I do in it and the sun and how there isn't good AC in the truck. Maybe if we leave in the evening tonight it will be easier.
Regarding tolerating, I asked the ladies on my chronic illness forum that I haunt ALLLLL the time, how they define it. One said that it could be looked at as looking for "permission to stop treatment" vs "reassurance that its ok to continue". As miserable as I am, at this point I'm still on the reassurance side. Another said that she looks at tolerating something by seeing if she can still take care of herself and the animals that depend on her. I'm just barely squeaking by on that one, but I can't really take care of the animals and Button. Others said they define tolerating a med by the benefits of treatment outweighing the side effects. This one got me thinking.....
In my case, the side effects are nausea, headaches, stomach pain, and sun sensitivity for the most part. The results of treatment are killing the bugs. Yet killing the bugs cause effects in and of itself. I experience increased pain in my joints, flu-like aches, feverish feeling, swollen, painful lymph nodes and exhaustion and increased brain fog. Add all of that up and its pretty miserable.
But do I want to continue to let the Borellia have free reign over my body? Do I want to continue to deteriorate and become more disabled than I already am? I give a resounding HELL NO!!!!!
It reminds me a lot of cancer. Now granted, I haven't ever had it, so I don't really *know* what its like, but I do know a few things. The chemo drugs are toxic and cause some pretty yucky side effects. Yet when you take chemo drugs, they don't discriminate and only kill the cancer cells. Every cell that is dividing in your body dies. And this makes you really sick too. Its a double whammy. Its not the drugs themselves that cause your hair to fall out, its the cells in your hair follicles dying. Its a result of the treatment, not a side effect from the drugs.
How do you choose when treatment results land you in bed and unable to care for your family? I guess ultimately, cancer patients know that if they don't treat the cancer, they'll die. Is lyme disease a fatal one? Not immediately, no. But the lyme buggers can and DO cause permanent damage to your heart and nerves and joints if they're left to do their thing for too long. If they dig into the wrong places in your body, the damage they leave can eventually kill you, a very long, agonizing time later.
So I'm at the point where I'm seeing the choice I have to make. I'm seeing what the forest I have to travel through looks like. Its dark and rather scary. But if I want my life to improve, I have to keep going.
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