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About friday7

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  1. Thank you statesof and ks42.It think I have a better understanding of this. I will try what you suggested about the doctors. It's really hard for me. I have social anxiety, so making phone calls in general is really hard for me. But I am at that point where I feel I have gotten all that my present doctors are going to give. I will have to learn to call doctors office asking questions. It's very hard because you don't get very many people willing to take time with you. I know I have to persist. It's just hard.
  2. Thanks for the answers everyone. angellozI have been tested for other autoimmune diseases so far nothing. I have had a couple of Neurological tests done lately. I had a cat scan, an EMT I think it's called, and a tissue punch test. The last one I haven't gotten a result from yet. Most of my treatment has consisted of getting my BP up with Salt tablets. That helped quite a bit. And after I had my oophorectomy that helped a lot as well. But these Neurological symptoms. They weren't that bad at first. But now it seems they are worse and aren't going away. My Dad had Neuropathy from Diabetes and
  3. I'm trying to understand this because I'm really having a hard time with Neurological symptoms. Is P.O.T.S. a neurological disease or not? It is listed as a Neurological disorder on the National Institute of Neurological Disorders and Stroke site. I know it falls under the category of Dysautonomia. Yet all of the neurological specialist I've seen have said I do not have Neurological problems because I do not have a neurological disease. The first two had never heard of P.O.T.S. I recently saw a new Neuro. I started seeing her when I was getting numbness in my legs. I also was getting trouble
  4. I just think everyone is so connected these days, I think virtual support for people that can't get out much, makes sense. I'm glad to see others feel this way as well. Although you can get support from an online group it's not the same as talking in person. I wish I could start something myself but I just don't have it in me. I've been sick all week so I haven't really looked into this any further but I did see, that in the online community, "Second Life", there are areas specifically for people with disabilities. For anyone that doesn't know, "Second Life" is a virtual world. It's similar to
  5. Hi. I was having a hard time again lately with keeping my BP up and getting infections and I felt upset because I didn't want to be stuck in the house again. Then I thought about a you tube clip I saw once about a woman who used Second Life as a place to teach some of her students that were physically disabled and I thought what a great idea. They were able to not only learn and talk about their issues but also socialize. And although they were behind an avatar they were able to talk to others through their PC. Anyway I started to wonder if there might be anything like this for Chronic illness
  6. I've been having nightmares lately and I had taken Prazosin, or Minipress, in the past for this. I am a little reluctant to try this again because of the fact that the prescribing doctor says it can cause low blood pressure. I thought I had head that it was like a beta blocker though. I remember taking a Beat blocker for the POTS a few years back. I was told at that time it would have the opposite affect on me. Meaning it could raise my blood pressure. So my question is, has anyone taken Prazonsin? Or do you know what kind of affect it has on people with POTS. Is it similar to a beat blocker?
  7. I was wondering if anyone knew whether Medicaid would pay for pain management, or how I would go about finding out. I'm not just interested in drugs. Any kind of hypnosis, biofeedback or things like that. Normally I know Medicaid won't pay for things that are not drugs. Bet i thought in the case of Pain Management there might be something I can get . I can't afford anything on my own. I'm in NJ if that helps.
  8. Hanice, That's a Beautiful painting. Carrie, do you have a link to your blog?
  9. thanks all for the replies. not feeling up to replying myself right now, but i wanted to let you all know i read your words and i thank you for the support.
  10. Hi. does anyone else have decreased resistance to colds and such? Seems like I go from one virus or infection to the next. I have a time where I feel pretty good for a while. Start thinking of maybe even trying to work, then bam I'm sick again...and no it's not psychological..lol I was actually looking for a job this past year. Not easy to find the hours I need though. I was volunteering which was nice. And even driving. But then I get sick and I feel so alone. It's been a few months now. I start to feel better and then something else happens. I have a hard time now not feeling negative. I kno
  11. Thank you so much everyone! I told them i wanted to talk with my doctor directly. She called back and wrote me a letter, no problem. So i feel so much better now. now hopefully ill get help with my air. the woman i talked to first obviously didn't know anything about pots, but of course assumed she knew enough to tell me what i needed. so frustrating when you have to deal with people like that! i was so upset because someone is willing to fix our central air and it would be crazy if that were stopped because of a stupid note that i actually deserve to have. Thanks everyone for your help and su
  12. thank you so much hearts. that's just the kind of thing I need.
  13. first i apologise for my typing. my keyboard isn't working, so im typing this on the onscreen keyboard its not easy. anyway, i have a very hard time with the heat in the summer. i know thats not uncommon with pots. i currently have no central air conditioning system. it broke, we can't afford to have it fixed, and in our community they wont allow us to put window air conditioners in. i am very scared about the coming summer. we can get help getting it fixed however, but i need a doctors note stating that its medically necessary for my condition. i already called the doctors and had a nurse t
  14. I used to have a wheelchair. First my Mom pushed me in it because it was too hard for me to push it myself. Then after a while when I gained more strength, I would use it as a walker and sit down when I needed to. I am able to walk better now and just need a seat with me just in case I need a rest, so I use a walker with a seat. I don't know what kind of insurance you have but I have medicaid and they paid for both. So I didn't worry about the cost. Don't let anyone worry you about it keeping you deconditioned because the more you get out the more you'll want to get out and the more you'll wa
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