Monday, July 13, 2009

Yay, good news

The neurologist says I don't have nerve damage, which I'd still have if I had Guillain Barre--he thinks I was so weak because of blood poisoning/effects of that much bacteria from being that ill. So I get to cross one more specialist off my list again. My husband looked kind of queasy/squirmy during the nerve testing--they stick needles in pretty far.

My husband asked if this changes my mind about my internist. No, I was not to blame for not recovering after four rounds of antibiotics. I was really sick and not to blame for it. (Don't read this sentence if you get grossed out--incessantly coughing up copious green fluids for weeks was scary.) If he thought I were less ill, giving me reassurance and his evidence that I was and should be okay would have helped far more. Ultimately, our styles are just too different, and we just could not have worked together. When I started going out of my way to avoid him for routine problems, that was a sign I should have changed doctors. I still believe that he's a good person who cares about his patients; I still think I am a good patient who cares about my health and a good person who shows more consideration than most for my doctors' time and efforts. Whether I needed reassurance, whether I was experiencing drug side effects, or whether I had something more serious, I did not need blame.

Maybe some patients who are giving up and not trying improve with straight talk--I don't know. But I need encouragement. The doctor today was encouraging and not blaming, and I feel good about that. The dermatologist Friday gave me news that she said she knew I did not want to hear but she did not blame me for not coming in earlier, though I should have. Instead, she gave me help for where I'm at so that we can go forward without more damage, telling me at what point to come in at the future so more loss doesn't occur. That's encouragement.

I did call to get Enbrel set up. I don't know if this is a good idea or a bad one, but all I know is that I'm having very, very few good days. Saturday was a rarity. I'm sitting on ice packs just after going to the neurologist. I'll give it a try. I'll be careful--I will. It can always be discontinued if I need to.

Note: I looked up blood poisoning and sepsis and related diagnoses and don't know that I agree with that unless I had some slow-cooking version of it that the change in antibiotics reversed, but anyway, I was pretty darn sick with that infection, staggeringly sick, and it wasn't my fault. I'm glad I got better. You can bet if my kid or spouse or parent was that sick--not just the respiratory symptoms, but getting that physically weak and worsening, I'd have been fighting for better care. And I'd do the same for myself if it happens again. I'm not accepting blame anymore for what's not my fault. If there is something I can change, fine. But not for what's not my fault. I took my medicines, drank my liquids, followed directions, avoided others with illness (though I got sick again then from a nurse with a cold). It is beyond ridiculous to blame a patient for upper respiratory infections when many people had upper respiratory infections then.

I haven't had an upper respiratory infection in many months. It is not because I am virtuous or changed my attitude or have followed some obscure practices. It's a matter of weather and luck and avoidance and an immune system that's not already down from other infections or inadequate pain control (pain was less relieved then).

No comments: