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MightyMouse

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Everything posted by MightyMouse

  1. Hi again, I'm more mechanically inclined than artistically creative. It is suprisingly easy to make the bracelet. You just need the right stuff. Here's my list: Beading wire (i use the platistic coated memory wire--the medium gauge) beads sterling crimp beads (used to close the ends of the wire around the clasp loops) clasps (sterling-plate brass lobster clasps, both sides--pure sterling is too soft for everyday wear) crimp bead pliers needle nose pliers (which have a wire cutting blade too in the center) that's the whole list--inexpensive if you don't go overboard in buying your beads (that's where I go nutty can't seem to help myself b/c I LOVE the sterling "Bali" style beads--they look beautiful on the wrist, but they gan be price because they're handmade. The coolest thing has been the nice comments I've gotten on the bracelets--and a few people have asked me to make bracelets for them or friends as gifts. Girlfriends at work have paid me to make holiday gifts for them...pretty cool I usually only charge them what it costs me for the components. If you do think you'll make items for friends or family, you should add one more item to your list: jump rings (plated brass if possible--again, sterling silver is soft and the ring will open or become mishappen over time). The jump rings are used in combination with the clasp to close the bracelet--you don't need them if you're attaching to a medical emblem because the emblem has openings on each side for the clasps to hold on to. Have a great time making stuff The best part is that if you don't like it, or want to change it, you can just take it apart and do something different! Nina
  2. I had a question sent to be privately, but I thought I'd share my response with your here to what one can put on the bracelet. There's not much space, so choose the most imporatant stuff for you. Mine says "Drug Allergies, Asthma, Dysautonomia. Call MedicAlert." Then the standard line imprinted on all MedicAlert items: Call Collect (number here). My previous bracelet said: Syncope, Tachycardia, Low BP, Asthma However, once the drug allergies really got bad, my docs and I felt the allergies were the most dangerous thing b/c I'm allergic to many common items, that if given, could kill me. Also, more specific instructions are on file with MedicAlert, including all my allergies, all my meds, and instructions, including emergency contact names and numbers (my docs and family--so, once a first responder call the number, that information is available. Nina
  3. Just a note--if you're going to wear one, you should put it on your left wrist--it's the first place they'll go to take your pulse, typically. No, they're unlikely to go in your wallet/purse unless you have a bracelet or necklace to indicate you might have important info in there. I used to keep a laminated card in there, until my doctor said to me "How will anyone know to look there? They may have already given you drugs you're allergic to by that time!" I got my bracelet the next day. Nina
  4. I figured I'd post this just in case: The best pasta is brown rice based Tinkanyada. I get mine at a chain of markets called Zagara's--which is the same as Genaurdi's. I've also found it at my health food store, and Fresh Fields Markets. The best mac & cheese is by Pastariso... It's my favorite comfort food--the kind with the orange powder they also have white cheddar. I like both. I usually get the "mini shells" version. Bread: food for life's brown rice based breads. They make a good one that is brown rice and pecan, and a pecan raisin. Toast the bread for the most realistic flavor. Glutano makes the best cookies...well, not exactly the BEST...b/c the absolute best are fresh made sugar cookies from a gluten free bakery in Philly called "Mr Ritts". Yum. They'll ship stuff to you frozen too. If you're a chocolate nut, order the succhertorte--it's amazing. My relatives love it for dessert--didn't even know it was "special" cake. Mr Ritts also makes a great personal pizza dough (precooked, like Boboli), just rub down with olive oil, crisp it a bit in the oven, then put on the works. Hidden ingredients can be found on this website: http://celiac.automated-shops.com/cgi-bin/...-19103249959.eb (the above is the link to the site index--find the link to the "safe and forbidden foods" list) Nina
  5. I wear one whenever I leave the house. Nope, you don't need a prescription. I initially got mine onine from MedicAlert. I also have one from Lauren's Hope. After a while, I decided to order just the tag portion from MedicAlert and I now make my own bracelet sections so I can change them every day to match my clothes. Even my doctors have commented on how nice they are I order my beads and beading wire from firemountaingems.com. If you want instructions on what to order as far as the clasps and closure components, just ask. I'll be glad to post the info. so, currently, my bracelets are still a MedicAlert tag with a customized bracelet--I like knowing that they are there to answer the emergency call 24/7 --and they maintain a list of all of my medications, doseages, allergies, and conditions--all in one place. I chose to be a member once my allergy list exceeded what I could print on a credit card sized paper for my wallet. Nina
  6. Oh, one more thing! I have an ep cardio, Dr. Francis Kempf, at U of P also!!! He's not an ANS specialist, but he's a really good doctor--was genuine, interested in learning about my disorder and was super helpful. If you have a good experience and find a doc who knows this stuff, be sure to let me know! I always like to know what my options are locally--and it's nice to know that I can see someone nearby instead of driving hours and hours to see someone knowledgeable. Nina
  7. Hi there Poslisa, usually with POTS, the high heart rate is functional. By "functional", I mean that the heart is trying to keep your heart, lungs and brain protected and perfused with blood--the rise in heart rate can be triggered by a falling or unstable blood pressure. So, just decreasing heart rate, alone, will sometimes make folks with POTS feel sicker, be more likely to faint due to lack of blood flow to the brain, etc. This is why some folks who have various types of cardiac ablation to slow the heart rate (ablation kills some of the tissue that may help the heart kick up the pace) have done terribly afterward There are a few who've done well afterward...but I don't know many. The folks I know of have all done much worse after ablation. This is why the first line of treatment is usually to find a way to stabilize the bp. This is done using the simple stuff first: total blood volume expansion by increasing salt and fluid intake, and the use of support hose to force blood to the upper body more effectively. If these low tech things do work, there are meds, some which expand blood volume by various means, and others that constrict blood vessels to force the bp a bit higher. My heart rate, lying down, is between 60 to 80. Upright, it can be normal at about 80, but I know at work it goes well into the aerobic range, in the 130s... just driving my car today, I know I was in the 110 to 120 range. This is my norm and I guess I've just gotten used to it. When I wear support hose, I do better, but it's a catch 22 b/c it was about 80 today and the hose are so HOT and uncomfortable in the heat. So, instead, I sweat just doing nothing, but at least I don't feel constricted. Have you tried Rx support hose? These are not the standard off-the-shelf support hose--these are rated something like 30mg of mercury--sturdy, indeed Nina
  8. For years I thought I was allergic to wheat...but it turns out that it was the gluten, not the wheat, that was making my belly so grumpy. Gluten is found in any items derived from wheat, barley or rye. I have found that there are several places where I can get really tasty pasta. Email me if you want a list of the goodies, b/c I've tried many brands over the past several years and can tell you what tastes most like the real deal. Same goes for bread and cookies. Also, don't assume that products are gluten free even when they say so on the label...can't tell you how many times I've inadvertantly cheated. Soy sauce has barley malt...beer is a no-no...corn flakes have barley malt, as do most rice cereals other than oatmeal. Granola is usually off limits b/c of wheat germ or barley items. One of my biggest surpise no-no's was Twizlers...they're made of wheat starch. Also, most vegetarian items contain meat substitutes which are derived from gluten--if you see the term "textured vegetable protein" that's a synonym for gluten (fake chicken, hot dogs, burgers, etc.) and will probably give you more gluten than any other single item. I found out each one of these tidbits the hard way. Nina
  9. I've experienced similar problems. It was described to me as a bp and hr regulation problem, not just low bp and high hr... I get huge swings in both, then followed by a precipitous drop in bp and then a few minutes later, my hr drops too, and down I go (that is off meds). Nina
  10. I'm not one of those who no longer gets sick anymore--I seem to pick up everything that's running through the neighborhood or school. I've learned from my past that it pays for me to get my flu and pneumonia shots every year---keeps me out of the hospital in the winter. As for SSRI's, I'm very fortunate to have never suffered from clinical depression. However, I am still taking a very low dose of Celexa as per Dr. Grubb's advice to me. He believes that the the SSRI's help the CNS, and that, in turn, has "a mediatiing effect" on the ANS. I have noted a more stable (but far from perfect) bp and hr. Also, my GI functions are better. Again, not perfect, but better than where I started. No perfect answers out there for any one of us yet--but it's worth looking in to the SSRI's for some potential benefit. Also, don't discount the entire class of drugs if one doesn't work for you; it's possible one of the relatives still may be useful (for example, paxil has horrible side effects for me, but Celexa only had an initial adjustment and I now have ZERO side effects). Good to see you back on the board. Nina
  11. Body temperature is regulated by the autonomic nervous system--so if your ANS isn't working properly, such as with POTS, it's possible that it may be the reason your temp is "off." BTW, if you haven't ever downloaded the free book from the NDRF, their handbook, I strongly suggest it. It answers many of the common questions and clearly described all the systems involved with the ANS... http://www.ndrf.org/NDRFHandbook.htm from memory, here are a few I can think of: blood pressure, heart rate, GI functions, bladder functions, sexual functions, body temperature (including sweating, flushing), partial control of respiratory function, etc. Hope that helps! Nina
  12. My original diagnosing doctor was a neurologist. This was then confirmed by a TTT done by a cardiologist that she referred me to. Either can do the diagnostic stuff--typically the issue is that most docs haven't got much training in this area, which is why they routinely send you along to someone that they may feel knows more about your specific issues (at least that's the way it's SUPPOSED to work). Nina
  13. Tingling could be a symptom of POTS, but remember that you may have other issues going on as well. I had tingling in my arms for years which I just chalked up to my wierd POTS/NMH issues--but it turned out my spinal cord was seriously compressed and I needed surgery to have it repaired. Now my hands and arms feel perfectly normal. So, I guess my message to you is this: Just because you have an autonomic disorder doesn't mean you aren't susceptible to all the other ailments that happen--in my case, it was a ruptured disc, and followed by my body naturally fusing the joint in a bad position. If the tingling continues, you should be sure to let your primary doc know...and perhaps be seen by a neurologist just to rule out the typical culprits. nina
  14. Some people, particularly those with sudden onset (such as post viral), may get better over time. Others may stay the same and others may get worse. I asked this question when I saw Dr. Grubb--for me, the answer is that I may get a bit worse, especially around menopause. Keep in mind, I've been symptomatic all my life, and this prediction is made given that little by little something else goes wrong each year...so since that's been the pattern of the past, it's likely to be a similar pattern in the future. So the short answer is that it will be a different course for each one of us. Nina:)
  15. Yep, I know exactly what you're going through. I was out a couple of months ago with my uncle...and he confided in me that my Dad, although he's never said it to me directly, thinks I'm "doing all this for attention". To which I replied to my uncle, "yes, I'm such a good faker that I was able to trick the NIH into including me in their clinical studies." My uncle felt bad ...and I guess he was telling me in order so that I would not disclose information to my father that would just end up being thrown back at me, or have him call my a hypochondriac (which is apparently what he's been telling the rest of the family). The other thing that bugs me is that my dad doesn't have the guts to say a single word to me either way...but is quite free to say all this crap when I'm not around. At 37 years old, I thought I was past getting that pissed about stuff that my parents do. Guess you never stop being "their kid" no matter how old you get to be...hence, it really does hurt when stuff like this happens. big sigh. Got to let it go. Although, I'll turn into a fire-breathing dragon if he (or anyone else) ever has the guts to tell me such things to my face. Nina
  16. oops! I forgot to say that I also take ambien nightly to help me fall asleep and stay on a regular sleep schedule. I find that if I don't keep to a good sleep routine, the rest of my health goes haywire. Justin, I also have terrible medication allergies which developed over the past several years--however, these were well underway before I started Celexa. I wear my medic alert bracelet because I now have allergies to nearly every antibiotic made (only tetracylince/doxycyline doesn't give me hives and respiratory problems). I have heard that there is a new antibiotic on the market, but at present, the price is in the hundreds for one series. Everytime I get a sinus infection, I keep my fingers and toes crossed that the doxy kicks it out of me...otherwise I'm seriously S.O.L.
  17. I take 20 mg of Celexa as per Dr. Grubb. He believes that SSRI's, which affect the central nervous system, can have a mediating effect on the autonomic nervous system. Since starting Celexa almost 2 years ago, I've had significant improvement in my GI symptoms--fewer bouts of spasms and pain, and when I do have symtpoms, they are less intense. I'm not currently taking any other meds specific to dysautonomia--but I'm on a snootful of stuff for allergies, asthma and reflux--flonase, zyrtec, advair, singulair, benedryl, and nexium-all taken daily or twice a day. Nina
  18. Hello--the previous posts are completely accurate: GI symptoms can be a result of autonomic dysfunction. Keep in mind, your gut works on stretch receptors to let it know it's "full" or it's "empty"...just like your veins and arteries work on stretch receptors to adjust the pressure, flow rate, etc. Some of us experience severe GI symptoms, including gastroparesis (JacobyD can speak to that one). I have very slow motility...and have a 20 year history of severe GI pain. My docs used to think it was endometriosis--but after an exploratory surgery, it was determined that it was not the case. I think it's just my system spasming, the same way my veins and arteries do. In fact, when I had an arterial line, the artery spasmed for most of the day. My veins do the same thing. You may find it helpful to download the ndrf's handbook on dysautonomia, which is a free PDF download. There is a clear description of the GI implications. http://www.ndrf.org/NDRFHandbook.htm Nina
  19. Hey there Tim, The other board was great, but if this one is more consistently up and running, then I know that it'll be great for all the members. You and Michelle have provided us with a great avenue to share information, ask questions, and get support from one another. THANKS!
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