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About janiedelite

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  1. I have high BP on standing, raynaud's and other symptoms of vasoconstriction. My excess constriction is a result of the high norepi levels that I produce in response to orthostasis. But my underlying problem is actually blood pooling and the vasoconstriction is my body's way of compensating for the blood pooling. I wear 30-40mm thigh high hose (I'd use abdominal compression, but it is too uncomfortable). I also use lots of salt and fluids. When I'm overly hydrated and/or compressed, my upright BP's are lower.
  2. I've found that chest pain that is relieved by lying down is probably POTS-related, and due to thoracic hypovolemia.
  3. Another thing about "normal POTS chest pain" is that it should get better once you're lying down.
  4. Thanks for sharing that, Mack'sMom! Sounds like a good image of the "golden years"
  5. MommaChaos, I agree with kcmom. My hubby is a Special Ed teacher, so I know a bit about special needs kids through him. If I were you, I would want a 504 plan in place because the teacher and school will be held liable if the for some reason your son is hurt as a result of them not following the 504 plan. It's more legally binding and protects your son.
  6. I have coped with my illness by volunteering. I wasn't sure how reliable I'd be if I had to drive somewhere to volunteer, so I started by volunteering on DINET as their Volunteer Coordinator and now as a Moderator as well. I also helped at my husband's school because I knew I could lie down in his office as needed. Last year, I volunteered as a foster parent (with my husband and other family member's heavy support). We only had 1 child most of the time, occasionally 2 kids. This year I'm going to try to volunteer at a local elementary school. I'm going to help for just a couple hours at
  7. I went through a bout of very low BP a few months ago. I was caring for our 2 y/o so there was no opportunity to take more than a few minutes getting up out of bed once she was awake! I would keep a midodrine at my bedside and put it under my tongue to make it get into my bloodstream faster. I also kept a 1/2 liter of extremely salty fluids next to the bed and drank them upon waking. Another thought I had was getting a small office chair or a stool with wheels (like the ones doctors use) that you could use to roll to the bathroom.
  8. I go to a protestant service, but spoke with the pastor to let him know about my illness and that I'd be lying down in one of the back rows so that I'd still be able to attend. I sometimes got funny looks from the other congregants but just told them that I had a heart problem and then they were sympathetic.
  9. Have you tried domperidone? It can be helpful for nausea and stomach dysmotility and doesn't have the extrapyramidal side effects that reglan has.
  10. Sounds like she hasn't really been helpful anyway. I suggested getting a copy of your records so you could see if she really thought you had a mental health issue. If you could get your husband to tell you exactly when the doctor spoke with him even when she wasn't authorized, you could make a formal complaint. However, I'm not sure what good that would do. I try to keep on good terms with my physicians, even the ones that I no longer see for various reasons. That good rapport can only be helpful if your new doc talks with your old doc or reads her notes about you. Mostly, you need a doctor
  11. I agree with Sue1234! Also, I'm sure you know it's important to maintain your fluids and electrolyte levels during this time. I use water, pink himalayan sea salt and EmergenC packets.
  12. Check out the "what helps" on the DINET home page: http://www.dinet.org/what_helps.htm
  13. Can any of the other physicians in the clinic get you an IV today? So sorry; maybe if you got the IV into your system you'd feel well enough to make new arrangements for a physician.
  14. My EMG is pretty normal, but when I did a Functional Capacity Eval (done by a PT to assess what type of work I could do) it showed that I was very weak. I was SO surprised! I did the exam on a day when I thought I was feeling fairly good. I do notice that when I'm more hydrated that the weakness isn't so bad, although there are some days when I have no control over the fatigue and weakness.
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