I have been struggling lately as I wait to feel better. My family wants me to be better, but I have been hearing a lot of the same advice from all of my doctors. Be patient. They tell me this because I want to be well, I want to be over pneumonia, but they tell me that it’s going to take me a couple of extra months to recover because of my “special” circumstances. I am not a patient person, so this is not sitting well with me. They tell me that I’m “special” a lot of the time. There are so many things wrong with me now due to all my illnesses and medicine side effects that it’s almost impossible to separate the two, so this is translated to “special.”
I tried to stay home as much as possible to keep away from germs, but now I have a cold. I didn’t have to leave my house very many times for that to happen this time of year. I missed a couple of months of my girls’ violin lessons, and I went to one. I went to Target and Walgreens once. Other than that, it was just doctors, and an obscene amount of hand washing. If I end up back in the hospital because of this, it may just send me over the edge. It may send my family over the edge. I see the way they look at me. The fear in their eyes. I understand. September and October were awful.
In other news, my neurologist has also altered my VNS settings and my medications to help me deal with my auras. I was supposed to be able to drive again in October, but pneumonia, and now my auras have delayed things until possibly January. I’m really OK with that because I don’t want to drive while I’m a danger to myself or anyone else.
The other fascinating, or traumatizing thing that my neurologist said to me at my last appointment was that I should look at epilepsy as the least of my problems. She said to focus on my autoimmune diseases. I agree that this is likely good advice, but still, it’s a bit upsetting that epilepsy could be looked at as something to brush aside.
My rheumatologist has also adjusted my medication to see if it will make it easier for me to eat again. I gave up on trying to keep my hair a long time ago. I’ve gone through most of the anti-Lupus drugs already, so if this one doesn’t work for me, I think I have one more left to try until more are approved by the FDA.