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  1. Hi, I've been away b/c I've been too sick and was out of town. I had my tonsils removed monday and I'm shocked at how much pain I'm in. The oxy. is only bringing it down to about a 5 and I'm still having a hard time getting any sleep b/c of ocd. Last I tried to eat, I threw up quite a bit, so I'm hungry too. I went to Rochester to Mayo clinic to see a neuro-immunologist. Before I even came he had made up in his mind that it was depression after speedily reviewing a few records even though I brought all of my records organized. Every question was if my family had depression and I talked about the year I was bedridden unable to even lift my head b/c of deathlike fatigue and he said, "were you depressed?" So when all was said and done he wanted me to: see a psychiatrist, see a urologist, and take CFS classes on managing my fatigue. #1. I refuse to see another psychiatrist ever again. I've BEEN DOING THAT FOR THE PAST DECADE. My psychiatrist referred me b/c in 10 years NOTHING has helped. The mayo neuro claimed I was "treatment resistant" - I really hate that phrase, why not look for physiological causes instead of shoving more pills down my throat? #2. The urology dept. refused to see me. One of my ocd things is writing things down so I couldn't do a voiding diary. I tried to explain the ocd and they were really rude. I've seen tons of urologists at some of the best centers in florida anyways.............. #3. They wanted me to fly back 6 months from now and take some classes on managing fatigue. I think after 6+ years, I'm well aware of how to manage the fatigue. Was the doctor not listening when I told him that if I take a shower I have to lay back in bed b/c the post exertional malaise is SO BAD!? #4. He was a so called dysautonomic specialist, this is part of why I went, I have horrible POTS. He said it was b/c I'm inactive and lying in bed and left it at that. (the truth is, it started up when I was active and hiking then passing out in the woods on walks). WITH ALL THAT SAID, I have an appt. with Dr. Najjar in 2 weeks. Please send out positive thoughts and prayers my way. The flights nearly killed me, at one point on the plane I thought I was dying. Everything I do causes more and more fatigue and the motion from plane made me throw up. Dr. N's receptionist said he reviews all records before taking on patients so I hope that is a good thing..... that something stuck out to him or he thinks he can help or worth a try. Insurance covered mayo's appt but is not covering Najjar's. I'm worried about any tests that will be run as my mom and I don't have much money. We will try to get things covered post nyc. One thing is I've never had a lumbar puncture and I keep worrying about how much that will cost. We are trying to do what we can with insurance right now. Anybody have any tips in regards to showing up without insurance coverage, how tests will and can be covered? Thanks everyone for your kindness and friendship. Thanks to @trintiybella for you message. And powpow - for your continued support. Juliafaith.
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