Nothing new to be flustered confused and befuzzled. Now that the nurse of death has been here, lots of people have opinions. I feel bombarded by opinions….and not a single person knows my whole health picture. It was today’s neuro that threw a wrench in the works. She does not want me to be in hospice….but she cannot give me IVIg, either. She says she is a neuro for the typical things like MS, strokes and seizures. She knows almost nothing about MG, but has diagnosed one or two people a year that she then sends on to neuromuscular neuros. She could readily tell I have MG. I liked her 🙂 She does not like the idiot clone neuros where she graduated from med school 🙂 At least half a dozen times she said she doesn’t work in the system she graduated in for a reason 🙂 She gave me the names and numbers of 2 neuros she says give IVIg and would treat me better than the idiots on the hill 🙂 Are you catching my glee in all this? I just wanted to hear a doc hate on their idiot colleagues as much as I do. I told her stories of the people I personally know of who have been through the same crap at the big hospital. She had heard that and worse….and was disgusted. That right there was worth the visit!
The bad part is she cannot directly help me. I don’t know how I feel about her thinking hospice is a bad idea. Sometimes I think that, too…but for other reasons. I have not read any of the hospice packet yet. I woke up, made the bed, got dressed and waited. First the exterminator showed up and sprayed poison. An hour or two later, the bed bug inspectors came in. Then it was safe to take a shower. I was weak, weak, weak. I was not able to use my hands much to wash my hair. I could not lift my feet off the ground. I could only slide them while holding onto the walker. And OMG…my blurry and double vision made finding my clothes and putting them on into a blind-folded scavenger hunt. Even harder was plugging my insulin pump back in. The task had me in tears. I could not see the parts or how they were oriented. When I tried to lift up my left boob to get at the infusion site, it only took a few seconds to start tremoring from the effort. Given enough time, I finally got the insulin pump components put back together and I even got dressed with a bra! 😮 Turns out my sports bra is the best place to transport the pump 🙂
Just as I got off at my TRAX stop, the endocrinologist’s office called to find out the name of my hospice company. I could tell they were miffed that their own contacts fell through and my NP found a company. More dollars they could make on me down the drain.
I liked this neuro. She was fairly young and not at all formal or stuffy. I was cheerful and joking around for the whole visit until the very end. She brought up hospice and did not think I should do it. She wants to see how much better I can get with IVIg. She was being way too nice and caring, so eventually I busted out in tears. Then she came over and practically sat in my lap, touching me while she talked. Dang it! I don’t do well with sympathy…it always makes me blubber.
I was glad to flee out into the real air and to get back on TRAX. It was a lot to think about. I came home and was even weaker. Know why? Whenever I see a new neuro, I want them to see the unmedicated Wendy…so I went without Mestinon and steroids. Gosh, I was constantly choking and gasping for breath. My blood sugars were great today, though 🙂 Then I took all meds at 5:30 PM and my blood sugar shot up 150 points, even though I have not eaten. Such a love/hate thing between me and steroids!
For me to be in the hospice program, I have to stop all meds and not go to another doc visit. After doing without my 2 most important ones today, I can see why they expect I would be dead within 8 weeks of starting hospice. I thought it was a much kinder and gentler program. It’s really a cost saving measure for insurance companies. Hospice means I would be right back to where I was before steroids. My nice old guy doc had explained how I would probably suffocate fairly quickly. Basically hospice, at least in my case, is assisted suicide. It’s a way to give up and slip away with narcotics. That’s not what I had in mind. I don’t want to be responsible for my death…I just want it to happen.
I must be at the bargaining stage of grief.