Following this weeks tradition of short notice screwing of EVERY SINGLE DAY, we had many emergencies today of which was not the least that a) Dr. Atwell-Pope ignored the instruction that she was no longer my neurologist of record. She called my GP to convince him that the Neuropsych unit where people with MS, Lupus, epilepsy and others learn behavior modification to keep their many symptoms (some of which are assumed to be stress related and thus bogus), in check and not constantly require attention from doctors or other medical staff was actually all about Neurological investigation (when all the literature FROM the unit says otherwise). And b) My GP decided he needed to speak to me today, this afternoon.
So I meanwhile was in my continuing quest to get another Home Care Nurse than Edriss, which it appears had never been done before. And the further I went, the more supervisors I talked to, the more you could have made ice over the phone line. First, CLIENTS don’t tell RN’s what they can and cannot do (Because Clients are usually 75 or so), and second, it was ass covering time. It turns out now that the head of the nursing section of VIHA has been added to tomorrows meeting (notified at 4:00 pm today, meeting tomorrow at 11:00 am). I asked if that meant we would talk about getting me a new nurse. The Nurse supervisor said, “All the parties will be present.” – and that is literally the ONLY sentence she would say. So fun, as I try to replace my nurse who has commandeered MY apartment for HER meeting.
Meanwhile my GP, because I had made a complaint against Dr. Atwell-Pope felt threatened, as I am “abrasive” and highly intelligent and would HE then have a complaint against HIM? I told him that of all the doctors who refused to treat me from sexual orientation to religious beliefs, I NEVER made an official complaint and I never expected to. Dr. Atwell-Pope had, in her own practice and now with her interference in my relationship with my GP (like this meeting for example) was causing a detrimental impact in my health instead of assisting in my healing. She had ordered tests, not to try and find out what was wrong or treat me but to prove she was right. This occurred even after her theory had been dismissed by her mentor, she continued in ordering the same tests repeatedly hoping for different outcomes and trying to stop all treatment from all parties, including my GP, because it would go against what her “instinct” told her a year ago. By the time this was all explained and everyone was okay, the talking on the phone for 7 hours, the week of exhaustion and the being in a very hot room made me put down my drink because “something was happening” (in EMT speak a “sense of foreboding”). Then I had a seizure. The Doctor observed (did nada to help me apparently – I was, um, busy, at the time) and Linda narrated what was going to happen next.
This made Linda’s day.
I feel like I have been repeatedly beaten.
The doctor has ordered an emergency CT scan. He will start me on pills next week. I spent a great deal of time not fighting the system in bed but Linda is happy because now the Doctor has SEEN, and he believes. Which makes me feel a bit like I am the miracle worker only in reverse, I have to create a disaster in myself, to make people into believers.
And starting tomorrow at 10:00, it all starts again! We have eight people in the meeting regarding care of my seizures. I told Linda I don’t know how I am going to stand the heat of being in a room with seven people. She said, that maybe (with a smile) I won’t be able to.
“You want me to have a seizure!” I yelled outraged.
She admitted that it would be very effective. I pointed out that it is VERY painful and that no, I cannot go around having seizures and losing days just to make points during meetings however USEFUL that might appear to be. Not to mention I don’t have control over it (though heat, stress, and fatigue are all factors).
Sigh, if this week ends, I swear, I am ripping out the phone because having a “week off” from my medical week which had two meetings a day and 5 hours on the phone minimum followed by ANOTHER week of medical tests (but this time, they are going to be “emergency tests for Seizures, including a EEG test after I am completely fatigued…..at night…in a warm room) Please, just let me write a damn postcard. Please. Let me watch a DVD. Let me send a gift. Please. Stop testing me and start CARING about me.
P.S. (1:55 a.m.) I actually did stay up past 1:30 a.m. and went to bed relatively content, a bit of my life taken back. To see how and why, go here
6 hours ago