It’s one battle after another around here. If I didn’t have diverticulitis, I would jump up and run from this place.
Last night I was taken off the IV antibiotic and a nurse came in and handed me pills. She said it was the pill version of the IV Meropenen. I asked lots of questions. Turns out what she said wasn’t true at all. The pills were clindamycin.
I remembered I had a bad reaction before, so Googled it. Site after site said it was bad for MG. When the nurse came back, I told her. She insisted the pharmacist had read through the package insert and it didn’t mention MG. I said they needed to get the list from the MG Foundation.
Then the CNA came in to try to convince me to take it. I took out the computer print out list from 2002 that I carry in my wallet. It listed clindamycin…and the eryrthromycin that hospitalized me this spring.
I have to argue about every detail of my care with these people. They are not letting me use Lantus, so my blood sugar has gone up. They find nothing wrong with up to 150 four hours after a meal. I stay around 100 right after a meal. It’s the difference between sloppy expediency and tight control. They just accept that diabetics will have poor wound healing, instead of the bother of keeping blood sugar near nature’s 85-95 normal. My wound healing has been quick using anyone’s standards because I keep tight blood sugar control.
I went to my old blog and Googled clindamycin. I took it October 24, 2009 for phlebitis and cellulitis. I knew it was on my don’t take list…but the Adirondack hospital people insisted I should take it anyway, and “they” would deal with the consequences. I went on to have MG weakness and breathing problems and several months of severe diarrhea. There was no “they” dealing with the consequences, just me :-(
The night nurse here was a total bitch to me. She badgered me many times and insisted I take the clindamycin because I would be just fine. She was making me nuts. Thank God another nurse came in!
A doctor was sent for. This morning I was told the doc didn’t want to wake me up, so left. What a bunch of BS. They woke me up every hour or two for other things.
Next a nurse and CNA came in to berate me for not taking clindamycin. The nurse hooked me back up to the Meropenem IV antibiotics, tsk, tsking the whole time. I used to like that nurse! I told her about the botched hysterectomy and how I kept insisting I had an infection and no one would listen. I showed her the wound pictures. I explained that I didn’t even have cancer and that this whole ordeal had been caused by doctor’s mistakes.
In Utah it all started with the neurologist refusing to give me IVIg. I then had all sorts of MG breathing and weakness problems. My internist gave me eryrthromycin which caused me to go into near MG crisis. Then I had to be hospitalized for that and was given high doses of IV solumedrol which caused me to bleed, which got me the cancer diagnosis. A bunch of dominos.
I then told her the long story about my appendix being ruptured and no one listening to me. I told her about my family doctor declaring me psychosomatic and then soon after, the college doctor diagnosing me with rheumatoid arthritis. Whenever a doctor didn’t know what was wrong, they blamed it on me. Over the years I got diagnosed with one autoimmune disease after another. I explained to the nurse that I had to learn to believe in myself and stand up for myself every step of the way. Almost without fail, if I backed down, doctors caused sometimes life threatening or at least significant problems. By the time I was done, the nurse was hugging and patting me. She saw the pictures, heard the stories and finally understood where I was coming from. If only medical idiots could try being me for awhile….it would be poetic justice.
The healthcare system we have is better suited to acute illness with people who are passive. Myasthenia gravis isn’t even understood by most neurologists, let alone other kinds of doctors, nurses, etc. It’s like constantly beating my head against the wall.
Well…time to prepare myself mentally. There are many battles to fight today.