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scarfgirl

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Everything posted by scarfgirl

  1. Doh! since my move I do all my shopping at a nice little hippie co-op down the street. It never even occured to me that they probably have licorice, or at the very least would order it for me. Thanks, lthomas.
  2. Thanks for that tip. This joint pain is driving me nuts, especially since it's a relatively new symptom.
  3. I took it for a while. It helped me, but not as much as the florinef did so I eventually went back to it. I remember very little about the dosage I took or how I got off of it. I do remember that you need to take some form of sugar with it to really get it into your system. I drank a glass of milk with mine. I'd highly recommend it if you think sodium reabsorption is an issue for you. lthomas, where do you get your extract? Finding a kind that wans't deglycyrrhizinated was such a pain, and part of the reason I went back to florinef.
  4. I know it's kinda mean, but I just say something snarky and thoughtless right back. "Joking" is no excuse for hurting someone's feelings. If it's a relative stranger I just stare at them and say "That was a stupid thing to say" or in some cases, "It's funny how fat people always feel the need to squeeze in a snarky comment about my weight" Most people when you call them out so baldly will usually stop and think next time. And although it makes me feel bad to hurt people's feelings (it shouldn't since they hurt mine first, but it still does) it's worth it for the remarks to stop without me having to "explain" things each and every time. I'm slowly learning that being a little bit mean does not make me a bad, or even unlikeable person. I still have problems with friends trying to make "helpful" comments. I know they're trying to help, but I can't seem to get it across that they're actually doing the opposite.
  5. What is it supposed to help with? The name of the company says Allergy Group, but it looks like the supplement itself is made as a digestive aid. Atractylodes Alba is the latin name for the chinese bai zhu and is used, I think, for constipation and as a general detoxer. However, Bai Zhu should not be taken by people deficient in yin. While yin is kinda tough to explain, it's safe to say that POTS people are pretty yin deficient, making this a bad herb for us. Poria cocos is called Fu Ling and is the asian verison of the truffle. It's a qi tonic so I imagine it's pretty mild on side effects of any sort, but you might want to try some small isolate dosages of it first, as opposed to something bundled with a bunch of other herbs. Sweetflag, is another one I would be wary of. I think it's called Shi Chang Pu. It should be avoided by yin deficients and I think is actualy a stimulant. It's a pretty controversial herb if I recall although it would look really great planted in the marshy area in front of my patio. Lumbricus rubellus is what I call the red wiggler worm. I've got a bunch of them in a box right now happily munching on food scraps. These guys are wonderful little bundles full of nutrients and would probably make a great supplement. Heck even their poop is super valuable. They'd be perfectly safe to consume, althought I've never heard of them having a use other than nutritional support. Unlike here in America, herbs have been pretty thoroughly researched in China. But if you were going to try some "chinese" herbs I wouldn't do so without first seeing a chinese doctor who knows about and fully understands your health problems. Random supplements have a chance of wreaking havoc on a perfectly healthy system. Sickies like us are almost guaranteed to have a bad outcome, especially since so many herbs are put in to "add energy and promote blood circulation".
  6. Good question. My demeanor is such that my hubby has nicknamed me "Mr. Spock", an epithet he particularly likes to throw at me during arguments. However I'm not sure how much of that I can attribute to my illness and how much of it is just my natural mien. I can remember all the way back to elementary school feeling a bit like an odd duck b/c I couldn't seem to giggle and scream like other girls loved to do. If being sick hasn't changed how I feel emotion, it has changed how I express it. I don't cry anymore, for instance. While nothing is more cathartic than bawling your eyes out during a nice hot shower, I know that any tears shed will only result in a sinus headache that will have me bed-ridden for the next two days as well as a puffy face and red eyes that'll take forever to go away. And no matter how excited I get, I'm not gonna jump up and down with joy b/c I'm too likely to pass out. I still feel the same amount of happiness or sadness as before, I just express it differently. Do a lot of people find their adrenaline rushes tied to their emotions? Mine just always seem to happen at random, or are triggered by a sudden change in my environment. I've never noticed an emotional connection.
  7. Sorry, it is MVP that requirest the antibiotics. I have Mitral Valve Prolapse Syndrome, but I consider it to be the same thing as POTS (I have been diagnosed with POTS also). I don't quite comprehend the importance of it, but I've been told enough times that I need it before dental procedures that I parrot the warning to others.
  8. I had wisdom teeth removed not too long ago. Because of the POTS I had to have the procedure done in the hospital, but other than that it was a snap. The IV solution they gave me kept me feeling really good throughout the whole procedure. Just make sure you are on an antibiotic before they work on that tooth. Your heart can have a tough time with any of the bacteria that might get into your bloodstream from your mouth.
  9. You gals don't find the health journal depressing? I think I'm pretty good about handling the ups and down of my illnesses, but writing about it daily always gets me down. Maybe if I made a chart or symptoms list, something where I could just fill in blanks instead of trying to put my illness into words? Anyone have anything like that? Thanks for all the advice so far. I love your journal, ode_to_fantasy, it looks a lot like my diary attempts. I feel less like a freak now. Thanks.
  10. Yes, you do have rights. http://www.eeoc.gov/types/ada.html My suggestion (and take it with a grain of salt, I haven't worked in two years now) is to speak directly to whomever is in charge of scheduling, explain to them the situation and your limitations and make sure they understand what they need to do to accomodate you. That "everyone has their excuses" crap needs to stop NOW. Make sure they understand that this is a real disability you are dealing with. People will often try to be dismissive of invisible illnesses, and the longer you let them get away with it the worse it will get. Best of luck to you.
  11. EVERYONE has to have a hearing. Social Security pretty much automatically rejects you the first two times, so don't worry about that part. As long as you have a lawyer that you trust you should be fine. My hearing was wonderful, despite a skeptic judge. The doctor they brought in gave a short lecture about dysautonomia and said that even though I may be perfectly fine some days, that there would also be days where I simply could not work and because of that I would be unable to sustain employment. He also said that looking at my medical records I was doing everything I should be doing to try and get better and that working at this stage would hinder progress. I wanted to cry--I think that was the best affirmation I had ever received about my illness, and it was from a total stranger. I wish there had been a doctor like that one around five years ago when I was trying to figure out what the **** was wrong with me. Sorry, I digressed a bit there--the point I was trying to make is that the hearing is a good thing and pretty much mandatory, so don't sweat it. Best wishes, Stacy
  12. Yeah, colds are horrible on me. I'm actually not that bad during the stuffed-up, coughing, snotty stage. It's the week after the major cold symptoms have passed where I really suffer and it can sometimes take me a month just to get a modicum of energy back. I'm crossing my fingers now because I made it past Christmas w/o getting my annual sinus infection of DOOM. People around me are getting sick left and right so I'm staying inside and loading up on Vitamin C.
  13. After a fight discussion with my hubbie I realized I need to keep a journal of my health so I can keep an eye out for trends and also better see the big picture. I've tried in the past to keep a diary but it was too easy to forget about. I had thought to do a blog, because that way friends and family would know how I was doing w/o having to constantly ask and because others would remind me when I stopped posting. However, I've never been able to pull that off either for the following reasons: 1) Posting about nothing but my day to day health issues gets depressing so I stop. 2) Posting about things besides my health makes me feel narcissistic so I stop. 3) Friends and family don't really get what a blog is and think I'm doing it to avoid talking to them. 4) Letting other people read my journal feels like an invasion or privacy--even if I don't write about anything private--so I tend to not tell people about it thus defeating the purpose altogether. So, I wanted to know what others did to keep track of it all. Also, if you do have some sort of online journal would you mind sharing it with me so I can get a feel for how that's supposed to work?
  14. I take both and don't have any problems. I had to play with the different brands and dosages of BBs for a bit and at one point I took a calcium channel blocker instead of a beta blocker b/c I always got dizzy on the BB. Now I take a real small dost of Atenolol and that seems to work just fine. I never had a problem with fatigue on them though, just dizziness.
  15. When I first got seriously sick I started lucid dreaming. I thought that was great, as I could always steer my dreams to a happy ending. Once I started getting treatment I lost that awareness and now whenever I have a heavy sleeping spell I find that my dreams are often very disturbing. Not like nightmares exactly, more like bizarre to the point that they creep me out. I don't like them, but at the same time I feel that they are necessary somehow to keep my psyche healthy so I do my best to not worry about them and instead focus on my sleeping environment. I found that little noises and interruptions during sleep made the dreams worse. Cuddling with a spouse or a kitty cat on the other hand helps a lot. Also the last two nights my dreams, while truly strange, had Johnny Depp in them. I am willing to accept all kinds of weird to have that trend continue.
  16. That does indeed look like a negative test but I have a few questions. Were you on any medicines when you had the TTT done? And if not, how long were you off the meds before you had the test? It may not be POTS, but just b/c you don't have POTS doesn't mean it's all in your head either. Have you looked into things like Chronic Fatigue Syndrome, et al, that have very similar symptoms to POTS?
  17. Good to hear Julie! It always warms my heart when someone has a good Dr. experience. I hope this means good things for you and your family. May I get a peak at that article as well? I wonder why the focus lately has been on adolescent POTS.
  18. Yep, that's a problem for me too. My family has gotten used to me taking a "time out" during events where I go find a quiet place to lie down for a bit. It's like I get a sensory overload from all the surrounding activity that totally wipes me out.
  19. My symptoms get so bad around that time that my Dr. changed my birth control so that I'm on a three month cycle instead of just one. It's really helped.
  20. LOL. Well, if you think about it, erectile dysfunction often involves not getting enough blood flow to certain "areas" when needed . I suppose the same principle could be applied to POTS people somehow. It's no stranger than some of the meds we take. And you said dilate, but did you mean contract? Offhand that makes more sense to me but I could be wrong. Good luck with this experiment. Strange as it may be I really hope it works for you.
  21. Seattle here. I never found anyone, so I found a good primary care physician and then called Dr. Grubb's office and asked for information to give my doctor. They responded VERY prompty and sent me so much research that my GP could probably consider herself an expert by now. I find having a good doctor close by that I can see on a week's notice if something is wrong is better than trying to drive three hours (I use to see a doc in Portland) to see a specialist that you have to schedule for a month in advance. And in my case at least, personal attention worked better than experience as far as improvement was concerned. Cheers, Stacy
  22. Thanks for the link Sunfish! I'll drop that off at the doctor's office first thing next week. I especially love the diagram in that article. I've been trying to put together something similar for ages and now I won't have to. Saw my Dr and my blood pressure was too high (never thought I'd live to see THAT) so we're gonna work on getting that under control by weaning me off of Florinef a bit before looking at new meds. Sheridan and Jacquie: Good luck to both of you, I hope it affects you positively. Keep me updated.
  23. I have no useful information to add......I just wanted to say that whether or not dysautonomia is your issue, that a lot of people here have been down the path that it looks like you're about to take. The exams, tests, medicine trials, etc. It's not fun and I'm sorry you have to go through all that but you're not alone.
  24. I've always had big problems with breathing. Shortness of breath was a major complaint for me long before the dizziness started, and I think I had every pulmonary and cardio exam possible trying to track down the source before the fainting started to clue me in. Basically, it's not asthma, but just like your brain can't get enough oxygen b/c of lack of bloodflow, making you dizzy, your lungs also aren't getting enough blood flow making you feel like you can't breathe. When you're riding your bike not only are you sitting down, but the exercise and pumping action is improving your blood flow even more so yeah, it'd make sense that standing would be more problematic for you.
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