I have been away for so long without posting that I'm not sure I can cover everything that's happened in a timely matter. But since I've got time, I guess I'm going to try.
I went to my support group meeting and it was unbelievable for many reasons. I was one of the youngest people there, but suddenly as we began introducing ourselves around the room I realized I was surrounded by others who were talking about MY symptoms, what I have had to go through all these years. But that's the point of a support group, right? So you don't feel like you're the only motherfucker out there with this problem?
The horror of Lyme Disease is that the more people that turn a deaf ear to MY problem, the more people will become infected and ravaged by this terrible illness. In the 80's, the AIDS epidemic began pushing its way to the forefront until it could no longer be ignored. Lyme Disease is like that, and in the midst of denial and rejection and political warfare this sickness is going to keep spreading. We'll pass it to our family members and children through blood to blood contact, we'll be ridiculed by doctors who aren't familiar with its travesties, we'll be bullied by our insurance companies and denied treatment. What will it take to break this cycle? And what was so strange about sitting in that chair listening to everyone else's stories was that if someone had acknowledged what was happening to us in the beginning, it could have all been avoided. Over and over again I hear this: "I had the tick, the rash, and the symptoms, even tested positive, and my doctor said it wasn't Lyme Disease." Or: "I've been diagnosed with (enter 10 generic catchall diseases of your choice here) and finally found out it was Lyme." Or: "One minute I was fine, the next I couldn't (insert normal everyday bodily function here)." And the saddest fact is that Lyme Disease, caught early, can be easily treated. Yet the denial goes on and on.
My own doctor seems to have resigned to the fact that I'm a difficult patient and can't be helped. My meds were stopped because of the hives, and for a week I floundered between ill and okay, then promptly developed an icky secondary infection thanks to the antibiotics. With that overwith, I did gain a small victory with convincing the good doc to test me for co-infections (caused by other germs ticks carry) and will hear the results of those in a few days. Either way I will probably end up at KU Hospital and those catchall generic diseases will be on my roster as well.
My midline catheter was removed today, and quite easily, I'm afraid to say. In spite of the ordeal it took to insert it, the nurse simply sat me down, unhooked the tube, and slid the line out of my vein in all of two seconds time. The only sign it was there is the massive tape burn and probably a permanent tiny hole in my arm, but I can't get my hopes up yet. The catheter will surely go back in before too much time has gone by.
Today my daughter and I went around town doing various errands and I was surprised that a full four hours passed and I was able to keep going even through long walks and carrying things. Everyday I suffer the short-term memory fart of thinking my symptoms are new and frightening, when really it's the same shit I've been dealing with all along. It comes on like a slow storm, and I can feel it moving closer and closer. Some days it's even like I wake up in wet cement, and as the hours progress that cement hardens, stiffening my joints and muscles till I can no longer move or function properly. Some days, like today, it's like a wave, starting with the slightest hint of pain in my legs, engulfing me in flu-like feverishness and fatigue, then rolling over me and leaving me washed up and beached. Then there are the days it's like a hurricane, hitting before I can even evacuate my bed in the morning, knocking me over and sending my life crashing like debris all over the place. There are the hours when I twitch incessantly, when the noise from my surroundings and the sight of it and the smells are just too loud. Two hours later I'm the perfect picture of health, doing the dishes and making lunch. By evening I can't remember what I did all day, or where the bathroom is. And facing anything is like looking up a tall, slick hill I'll never be able to climb.
I've gone through phases after learning of my diagnosis, phases that have surprised me, phases that have been predictable, that have allowed me to accept what inevitably must be true. It is not unlike other tragedies and what they bring in their wake. At first I was in denial, that I had this, that it had done this to me, that this could be the answer I'd been looking for all this time. Then I had to cling to it, to really milk it for everything I could and acknowledge that this was the thing to blame for everything. Now I must move past it, and realize that it's no different knowing its name. I have struggled with this for so long, that's it's really just a part of everyday life for me. What that means I will always be finding out.
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