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BelieverEM

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About BelieverEM

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  1. I love the white-fading into-scarlet idea. Can somebody design one? I'm no good on computer programs like that, but I'm guessing someone here is?
  2. Determining the proper length of ramp for handicap access. 1. Determine how much of an incline your power wheelchair or scooter can go up (should be listed in your owners manual). 2. If it is a straight shot into or up the stairs/step measure the amount of space or distance that you have going straight out from the highest point. 3. Take a measurement of the total useable width of the area you plan to have the ramp rest as the ramp width will obviously need to be smaller than this in order to fit. 4. Take a measurement of the total vertical(up and down) rise that you are trying to overcome. 5.
  3. Choosing a unique combination of colors would work best if we don't already have a color. Chiari uses purple, but so do over a dozen other causes.
  4. What is the awareness color for dysautonomia? How about a logo? Do we have one? I'm looking to make ribbons. Thanks! Erin
  5. Thank you all for writing about this! Of course I am intolerant to heat and cold, but I would put up with almost anything if only it would stop changing! Any rise or fall in barometric pressure makes my head feel like it's going to explode. It feels like when I used to dive, and would go to the bottom of the 14-foot pool. Except I feel it all day long. I call them "pressure headaches." Here's the weird thing: my dad gets them too, and he doesn't have POTS, or really anything "wrong" with him!
  6. My IgG was positive, but the biopsy was negative for Celiac. Still, when I went off gluten my fatigue, achiness, and brain fog improved quite a bit. Being GF is truly inconvenient and expensive and makes me a bit cranky, but is worth it. I agree: don't rely on the tests-- trust what your body tells you. If you feel better without a certain food/ ingredient/ chemical, hey, we'll take whatever relief we can get!
  7. If you use www.coolvest.com they offer a 20% discount to us. Code: POTS-20 I bought the ice packs from them, but tried 4 different vest before I found one that fit me right: http://coolsport.net/index2.html It helps tremendously with my daily intolerance to heat, but if I'm outside in the summer, it's not cool enough. I've read every article available, and know that I'm not supposed to use ice packs below 55 degrees because of vasoconstriction (see: http://blog.coolvest.com/how-the-body-cools/ Still, I'm thinking of investing in a active cooling system fot his summer (the kind that circulate
  8. May your glimmer of hope turn into a RAY OF SUNSHINE FOREVER. Thanks for sharing your great news with me. xxx's bellamia~

  9. I was on it for about 8 months, prescribed by an integrational MD (combines the best of holistic & traditional medicine). I had no adverse reactions at all, and only went off it because of insurance. Definitely worth a try. Preliminary follow-up had suggested that it was boosting my immune system. A pharmacy in Waltham MA (near me) made it. Contact me if you want more info (probably more reliable than from overseas).
  10. My advice: take your time and see someone who knows about POTS, and tell them that's what you want to be evaluated for. It took me over a dozen years, countless neurologists (the latest and supposedly best of whom diagnosed me with Psychosomatic Disorder), and three cardiologists who all somehow missed this! I was diagnosed with EDS by a geneticist 6 years into my medical nightmare. It was missed by cuntless orthopedic surgeons, physical and occupational therapists, ER docs, 3 PCPs, an rheumatologists. Recently, I came across POTS on an EDS discussion board. I found dinet, and saw a physician
  11. It feels so good not to be alone on this one. Often, I only manage to shower once a week. In between, I either use "No-Rinse Body Wash" (I put it in a spray bottle because it's thin as water and difficult to apply straight from the bottle) or pre-moistened bathing cloths. I've tried them all, and my favorite is "Comfort Bath Ultra-Thick Washcloths" because they're easy to use (no rolling or bunching) and actually get me clean. Applying babdy powder afterward is a MUST, to get rid of the slightly-sticky feeling, and to stay dry (just getting dressed can make me break out in a sweat). My hair i
  12. I got my powerchair after prowling craigslist for many months. My insurance was awful: they would pay $2000 toward my chair, but only if I got it through a certain company, which sold only very expensive models at retail price. I would have been spending a minimum of $5000 out-of-pocket if I went with insurance. As it was, I spent $1000 for a practically-new Invacare Pronto M51. About the ramp situation: I cannot afford an accessible vehicle either. I have two solutions. 1: We bought a folding ramp for less than $300 that fits in my mother's ford escape. I'm not endorsing any company or produ
  13. If it makes anyone feel any less anxious, I am now recovered from H1N1 (after 2 weeks). It felt like a regular flu. I took Mucinex 2x/day from the very beginning, and I swear it's what kept me out of the hospital (I have trouble with colds almost automatically turning into Pneumonia). It started with a sore throat & fever, and on day 2 I had the full-blown head cold. I started coughing around day 5, and the fever lasted a week. The chest congestion is now easing up. Take care of yourself! Erin
  14. I'm Erin Mosca (not the one from NY-- there are 2 Erin Moscas on facebook). Just put a note that you're from dinet when requesting to friend me! I don't know about chat rooms, but at the bottom right, you can check to see who else is online, and instant-message them.
  15. Like most of you, I only really leave the house for doctor appointments and church (my church has private rooms for nurshing mothers etc, with comfy recliners and tvs to watch the service, so I can sit in there with a few friends to enjoy fellowship and the sermon without the noise & confusion!). It's a bit of a relief to hear from others (especially other 20-somethings!) in the same situation. Facebook has a way to chat online with other members, so that's one way we could conect with each other-- setting up a time to meet online. Anyone interested? Erin (fscerin@yahoo.com)
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