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sandymbme

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About sandymbme

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    Advanced Member
  • Birthday 08/12/1975

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  • Gender
    Female
  • Location
    Ohio
  • Interests
    I am fortunately a voracious reader- which gives me something to do even on the bad days. I used to love all sorts of outdoor activities which are mostly beyond me now. I love to cook- and am even happier when I can eat what I cook!

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  1. I had a husband who needed a "happy and healthy" wife. Operative word being HAD. I got sick 5 weeks after we got married, and our divorce was final 15 months after that. He abandoned me in every sense of the word, told me frequently that the weight I had mysteriously gained (turned out I had celiac disease, it came off, fast, two years later, and then some before I finally got correctly diagnosed, went gluten free, & am finally relatively stable) even though I was only a size 6. He would completely abandon me every time I had to be hospitalized, telling me that all his friends "at the bar"
  2. At the time I was dx'ed, I was also a retail department manager. working 50-60 hour weeks. On August 12 2007, (doubly memorable, because it's my birthday.) I woke with the worst migraine I have ever had. It lasted for 9 months straight. In the beginning, I rarely had syncopal episodes. I just could not shake the migraine, and eventually I started getting dizzy spells. I still wasn't passing out, but it was interfering with my work, tremendously. As I passionately loved my job, I just could not tolerate being so bad at it, even though my employer was bending over backwards to try to accomodate
  3. I tried adderall, fairly early on in my journey, so at least 2 or 3 years ago. For me, there was not enough overall benefit to outweigh side effects and risks. The XR would keep me awake for exactly 12 hours, almost to the minute! But I didn't really see any cognitive improvement. I was awake, but not any better at comprehension, still "blanking out" on words, (which we STILL haven't dx'ed the cause or come up with effective treatment, sigh!) and getting lost, geographically as well as conversationally. That was the only drug in that class we tried, just didn't like the way it made me feel. Bu
  4. FWIW, as I mentioned in another thread, my first ever syncopal episode was when I was 17 in an aerobics class. With all of the postural changes in an aerobics class, I have never gotten more than 5 minutes into one without having a full sycope and a trip to the ER in the back of an ambulance. Almost 20 years later, and that is not only unchanged, but I have come to understand my POTS is caused by my EDS, which prevents me from doing ANY land-based exercise. The risk of dislocation, tears in ligaments and cartilage is just too great. I am, right this very moment, recovering from arthroscopic hi
  5. FWIW I have orthostatic hypOtension, and aerobics led to my eventual POTS dx. I can't go more than 5 minutes into an aerobic workout before all the positional changes do me in, and I syncope every time. My high school (this was early 90's, so no one knew much of anything about wny this was happening, and my PCP at the time eventually just gave me a note excusing me from gym until we were done with aerobics) did aerobics for a whole quarter, and by the time we were 5 minutes into the routine the ambulance was on its way to collect me! I also found, much, MUCH later (as in 8 months ago!) that I
  6. Sadly, despite being the daughter of a nurse and a pharmacist, these sorts of medical texts tend to be completely indecipherable to me. Can I just take your word for it, Issie? Sandy
  7. I don't think I have ever "reset". In fact, I have to be super cautious after I have a syncope issue, because I am very, very likely to just keel back over again when I try to get up. There have been episodes where I have been stuck on the floor for HOURS, because every time I try to get back up again, I come crashing back down. Today, in fact has been pretty bad, have had three full syncopes, and dozens of near syncopes. DISLIKE! Sandy
  8. This is good news! There is far too few resources to turn to for diagnosis and treatment, and the west coast has been terribly deprived! Yay! Sandy
  9. I have been there, and as another poster said, it truly was for the best in the long run. She told me rather bluntly she could not continue to manage my care because I had just grown way to complicate, and with her (admittedly very large!) patient load she could not manage me the way I needed, coordinating care, and being the "gatekeeper" over my meds. I ended up interviewing several, and got really, really luck finding my PCP who was just starting out in private practice, but had been an ER doc for years. So she had seen all kinds of bizarre issues over the years, and was unfazed by me. She g
  10. My PCP is a "integrative" or "fundamental" MD, which means she is just as likely to tell me to get a specific herb, or preparation that contains a variety of herbs, as she is to write a prescription for say, antibiotics. She firmly believes that health is managed beat when you use the best tool for the task at hand. So she has me on: Boswelia- an anti-inflammatory herb used for GI tract inflamation Vitamins C, D (10,000 IU per day) folic acid, B12, and acidophilus pearls. Inflamm-X from metagenics- a powdered drink mix that has complete, highly digestible, nutrient formula to help kind of tide
  11. I can't believe they don't feel EDS is very serious! Especially when there is some pretty darn good evidence that says in has a causal relationship to POTS! I have both, and a few other things as well, but my EDS probably causes me the most complications, the most pain, and impacts my life the most. Especially since it can be degenerative to a lesser or greater degree. In me, my EDS, POTS, celiac disease, and osteoporosis are all interwoven in a vicious little circle and exacerbate each other in all sorts of unpleasant ways. I would strongly encourage you to seek out a second opinion. PS...Thi
  12. A couple thoughts- First- Dr. Grubb asks me every time I see him how I am managing my stress. Not because he doubts my illness, on the contrary he confirmed on dx and was the one who originally caught and dx'ed the cause of my POTS. But he told me that stress if the biggest, most common trigger of bad "flares" of the illnesses, and that stress has a negative impact of the physical health of ANYONE. What stress does to one's health is NOT imaginary, or psychosomatic, or insignificant. Stress can put you at much higher risk for heart attacks, strokes, various types of cancers, the list goes on a
  13. I gained about 30 pounds or so when I first got sick, and then last year my weight plummeted, for no reason we could easily tell. After a lot of false negatives and dead ends, I finally ended up with a diagnosis of celiac disease. My weight stabilized for a minute, and I got back up to about 140, (I am 5'8, so at 140 I am still pretty slender.) but my symptoms have gone completely haywire, and my POTS, EDS type III, celiac disease, and osteoporosis are all exacerbating each other to a horrible degree. I have lost even more weight, am now down to 124, which is less than I weighed my senior year
  14. Hooray! It makes the journey so much less frightening and overwhelming when you start to feel like you have the right "team" of physicians, working with you, not ON you! Makes all the difference in the world when a doctor displays real interest and concern, and tries to treat you as an equal. So glad you found a good one! Sandy
  15. I am currently being treating for a very similar sounding rash, raised itchy red bumps, but small, about the size of the tip of a pen, or slightly larger. My doctor said she suspected foliculitis, which is a type of staph infection of the skin. So we are treating it with a 10 day course of Ceftin, (YUCK!) and we'll see where we are at once I am done with the antibiotics. About 2-3 months ago I also seemed to develop a nail fungus in my left big toe, which completely grosses me out. So we starting a long course of oral Lamisil for that, but she will be carefully monitoring my liver enzymes, as
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