What did it end in? Tears, frustration, anger, depression (seriously, I think I may talk to my GP about going back on Effexor, low dose, for a little while....I think it might help with all the stress and chaos that's got me so mixed up...as much as I hate the mood change it causes, I think the way my mood is currently running is less healthy, so it's something I'm considering).
My doc said he absolutely will not place a j-tube because it would be worse for me and too much trouble in my life and a mistake as far as my health. Really? It would be worse for me than living on clear liquids and pureed pastas and pudding? I would love to know that works. I tried pleading my case, making everything clear that I knew what I was getting myself into and why exactly I wanted it. But he adamantly refused. He referred me to the specialist group at SLU, who he says will run more tests and try different medications. I asked him what real cure there was for apparent gastroparesis, and he said they had meds and things for that. I'm unimpressed with his answers and reasoning. But I'm going to the specialist group at SLU. ....in 3 months. This is stupid. I have to wait that long to get in, then it will be another year of tests and medications and who know what the answer will be after that. I just hate feeling like crap like this all the time and I'm not stupid (I'm not a doctor, but I do happen to know a few things), I know that this would be so beneficial to me.
So right now, I'm at a loss. I just want to feel good again, not perfect, just good.
On the plus side, I have a neuro appointment and PT eval both coming up in the next month. It would be nice to get someone behind me on the dysautonomia and treatment/management for that. And I'm hoping PT will help me with some healthy/appropriate exercises and get me underway for fitting for some splints, braces, and other supports (especially a knew knee brace, since the dog chewed up my expensive hinged support brace...)
At any rate, the Percoset has me flying pretty high right now (pain, headache, more pain, muscle soreness/spasm). So I'm gonna sit here and just take it easy for the rest of the night and turn in early to get some rest before work tomorrow.
As frustrating as this all is, know that at the very least, you (we) are not alone. While I don't know what will fix me, I do know that a Doctor looking at me like I have stitched myself 2 extra heads and named them won't.
ReplyDeleteOh yes, that is most definitely a high point for me. It took a while, but I'm finally meeting (online, still nobody immediately close) people who I can really relate to and who I know will actually understand all this shit (even better than the docs). My primary care doc even asked me the other day if I'd met anybody else with this disease and I told her only online....she was very pleased that at least I had plenty of that and that any kind of contact with others helped me deal with bad days (and that right there is why she's a great doctor).
ReplyDeleteI think we would get less confused looks if that were actually the case. No lie. I'm really looking forward to tomorrow when I go into the neurologist to discuss the fact that I have dysautonomia (of some kind, it all varies) and that I would really like it if she could give me the actual diagnosis so people will believe me when I say it. Should go over really well, I'd imagine...... *sarcasm*
Kris, it's nice to meet you :) Welcome to my little corner of the world, which you're always welcome in.