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Everything posted by BelieverEM

  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. Use the measurements in accordance with the ADA requirements below to find the length of ramp needed for your situation. ADA requirements: (Residential Use) For loading unoccupied wheelchairs/scooters (unoccupied means nobody is sitting in the wheelchair/scooter while it navigates up the ramp): ADA recommends a 3:12 slope which means for every 3" of vertical rise you are required to have at least one foot of ramp (14.5 degrees incline) To determine the length of ramp needed: Measure the vertical rise from the ground to where the ramp will sit on the vehicle, stairs or threshold. Take that measurement (inches) and divide it by 3. This will determine the length of ramp needed for an unoccupied power chair. Example: 24 inches of rise requires an 8 foot ramp minimum (24 divided by 3). (Residential Use) For loading occupied power chairs/scooters (someone is riding on the power wheelchair/scooter): ADA recommends a 2:12 slope which means every 2" of vertical rise requires one foot of ramp (9.5 degrees of incline) To determine the length of ramp needed for residential usage (Note: Business use requires a 1:12 slope): Measure the rise from the ground to where the ramp will sit on the vehicle, stairs or threshold. Take that measurement (inches) and divide it by 2. This will determine the length of ramp needed for an unoccupied power chair. Example: 24 inches of rise requires a 12 foot ramp minimum (24 divided by 2). Check out the chart at: http://www.discountramps.com/articles/corr...ramp-length.htm
  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 circulates ice water through tubes). I'd be very interested in hearing from anyone who owns one of these! Erin
  8. 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).
  9. 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 from their list. I had my testing this week, and yesterday was finally given an official POTS diagnosis. Hang in there, and trust what you know about your own body. Keep us updated. God bless, Erin
  10. 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 is far too thick for the "No-Rinse" shampoo to do any good (I tried it once, and had to use almost the entire 16-oz bottle to dampen my hair, which was tangled beyond reconning, even with the conditioner chaser! My only way to get my hair lean without showering is if a parent or sibling if available to help me. Then, we use the "E-Z Shampoo Hair Washing Tray" in the sink (around $30-- you can get others for more money at sites like http://www.rehabmart.com/category/Bath_Hygiene.htm). I like the tray better than a basin because I don't have to lay down or tilt my head back at all. The cape (like the Comfort-cape) and funnel (like the shamp-ease shampoo funnel) styles also work well. It all depends on how much you want to spend. When I DO shower, I use my shower chair, prop up my legs, and use the hand-held showerhead. I use lukewarm water (slightly cooler than skin-temp) and do not leave the water running-- for example, I'll rinse my hair, then turn off water while I lather shampoo. Rinse hair, then turn off water while applying conditioner... I'd be interested in hearing how the rest of you manage to stay clean! Erin
  11. 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 product, but you can see photos of an example set at http://discountramps.com/portable-wheelchair-ramps.htm (TIP: get the 8-foot ramp for easiest leading/unloading of your chair!) 2. Check with the local public transportation bureau (for example, the "T"). Often, they have a program for disabled passengers. In Boston, it's called "The Ride." I can arrange to be picked up at home by an accessible bus for a very small fee. This gives me freedom when my parents can't shuttle me around. Again, just an example, is http://www.mbta.com/riding_the_t/accessibl...ult.asp?id=7108 We all reach the point of deciding that a wheelchair is preferable to missing out on life. My sympathy AND congratulations on making it to that point. Good luck and God bless! Erin
  12. 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
  13. 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.
  14. 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)
  15. I'm so glad someone started this discussion. I'm single, and it's something I think about often: will I every find someone who will want me, with all my issues, knowing what he's getting into? You've reminded me to try and remember that I have more to bring to a person/ relationship than my illness and limitations, and that everyone has SOME kind of shortcoming. Mine is just more visible than most.
  16. I think that answered my question. They can't get me into the lab for a tilt table test for another 10 weeks, and the doctor will see me 6 weeks after that to go over results (so I won't know anything until February at the earliest). In the meantime, I was just wondering if there is subjective criteria (like Julie explained), or if it's really based on interpretation of how much they believe my symptoms.
  17. I finally got in to see a neurologist who specializes in autonomic disorders (after a 5-month wait), and even though I have EDS and Chiari (2 known causes of pots) she seemed very skeptical. She only half-believed my prior diagnoses, because my EDS was a clinical diagnosis (there is no blood test for the type I have!), and because she said my Chiari looks mild on the films. She agreed to send me for testing (the soonest appointment is mid-December), but scolded me for using a wheelchair and being in bed as much as I am, and said that my problems are likely due to being over-medicated (I'm on so many meds BECAUSE of increasing issues!), or being depressed, and claimed that I'll feel better if I get out of bed and exercise more. I have practically every symptom listed on these pages, but they vary from day to day, and I'm worried that when my testing day finally arrives, I'll be having a miraclously good day and the test won't show anything. My question is this: what exactly is the criteria for diagnosis? Thanks, Erin
  18. There are several specialists listed in the physician directory, but as someone who has had horrible experiences with most neuros, I'm looking for personal recommendations. I've not yet been officially diagnosed, so I'm looking for that, plus treatment. Anyone in my area-- who would you recommend and/or NOT recommend? Feel free to email me directly with any details. Thanks in advance! Erin
  19. I feel worse after eating, too. We decided that it's because all the blood was going to my stomach to aid in digestion, like the other poster suggested. I do much better eating tiny amounts throughout the day. Good luck! Erin
  20. I don't look sick, but gained a ton of weight/ lost a lot of muscle, as I became less and less able to be up and around (now, I walk to the bathroom and feel like I'm going to pass out).
  21. THANK YOU for all the suggestions. I've not tried the hat, but made myself a neck wrap really cheap, using the gardening water crystals. The thing I did last week that helped was to put my feet in a bucket of ice water when I was sitting outside (in the shade), which cooled off my entire body. It won't help when I want to go someplace or be up and around, but it did allow me to be outside with my nephew and watch him play.
  22. I posted this somewhere else, but thought I'd add it here, too: if you'd like to buy from coolvest.com, they gave me a coupon code (to share with the community) for 20% off: POTS-20. I had a poor fit with the first one I ordered, and they let me return it with no penalty (the website says that they charge a restocking fee). The customer service rep I dealt with was excellent-- Jennifer Scherer <jscherer@coolvest.com Hope this helps! Erin
  23. Rachel, You don't sit ON it (I also need a cushion b/c of loose hips). It straps to the back of the chair, and you lean back against it. I find it very helpful, especially when I don't want to waer the full vest, b/c I overheat just by having my back leaning against the seat. If you want me to explain how I made my own, I'd be happy to help. Good luck! Erin
  24. It has been in the 80's here the last few days, and I cannot leave my air conditioned room without feeling like I'm going to pass out or throw up. I have a cooling vest, but this year it doesn't seem to be helping nearly as much. What do the rest of you do? Meds, devices, tricks? Please help-- right now, I don't know if I'll make it through the summer!
  25. I thought I was just crazy! You can literally see my hearbeat in my stomach, and it makes things move when placed there (like the remote you mentioned). If my veins are so floppy and circulation so inefficient, how can this be?
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