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About azmusiclover

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    Advanced Member
  • Birthday June 3

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    Music, family, poker, psychology, and striving to get better!

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  1. The weight loss may not be the medicine. I lost over 30 pounds in a couple of months when I relapsed last year. I still have yet to put most of it back on. I think I've gained back 5-8 pounds in a year. I hope you get it figured out, I was on the dangerously thin track as well....
  2. Oh it sounds like they are going to play dumb and give you are hard time. Did you request a formal meeting in writing? If you request it in writing they have 10 days to schedule and hold the meeting! Your daughter should qualify under "other health impairments." A 504 is not going to be enough if they are playing hedgehog right now. What sort of documentation do you have on her issues? I love helping other parents with IEP issues, since I've dealt with it for 10+ years and several kids. Please message me if you want further assistance.
  3. Count me in. RIght side more prominent too. If the reynaud's kicks in you can see all the veins in my hands and fingers too. It's creepy looking. I have extremely pale skin and it is very translucent. Finding a vein is never difficult, it's getting the vein to cooperate that's the hard part! I have the bulgy vein over my ankle too. It's one more of those things that I have just accepted about this illness. The weird stuff that doesn't fit. Interesting that we all have a similar experience.
  4. Yep me too! I always feel like I get a delayed reaction to most things... ultrasound techs have told me that my bladder is a "delayed filler" and then I have to go a ton, I often sick way after others are, or react to a food much later etc. Frustrating because it makes it difficult to know what's causing what!
  5. I moved from Michigan to Arizona back in 2000 for work, but I picked it because of the relative number of days of stable weather. Yes it's hot, and I don't tolerate that well right now, but most of the year it's great. I notice every monsoon though as the humidity increases and the storms start up, I feel worse. I wish I could afford the san diego area. The moderate temperature is so helpful. But the changes in pressure are horrible on me, and on my kids autism too!!! Holy cow, on the stormy days they are out of control! I hope your move helps you.
  6. Awesome. Thank you. I don't know about going off the antihistamines though.... I'm pretty much useless and sick without my hydrox! I'll have to think about that one....
  7. NM Potsie, is there a specific area of the skin they say to try the test on? Like arm is better than leg, or do it on your tummy or? I think that would be really interesting to do before I go see the allergist in case it's a rare time that I don't have a skin flare up going on. Thanks!
  8. I have had it happen. It happened a ton before I got on my regime of 20mg of pepcid twice a day and my hydroxyzine. I get that super full feeling right away and then the nausea... it's almost like I can feel it moving through the upper portion of my digestive tract. I also use zofran for nausea, but I have not had to take near as much since I got on the pepcid. Definitely talk to your doc before starting anything, reflux can be a sign of a lot of things that are going on in the GI tract and you don't want to mask something that's serious.
  9. My pain fluctuates. Where are you in your cycle? You might start tracking that, see if the hormones are aggravating the pain?
  10. Hmmm several weeks ago I was having a bad day, didn't feel right and had many episodes of smelling smoke that my husband did not, over like a 4 hour period. I even ended up going to the ER because I was feeling so bad. They did nothing of course. Wondering if I should have an EEG done... Very interesting.
  11. Thank you for posting this. I see the mayo allergist in 2 weeks and I am convinced this is a huge piece of the puzzle for me. Hydroxyzine has been my lifesaver for months now and I just had another round of the dreaded "d" today and I thought, I'm going to take one and see what that does. 30 min later my tummy is quieting and I feel "better" minus a little fatigue. I also noticed in your signature that we are both allergic to or have adverse reactions to a lot of the same medications. I find this highly interesting and fascinating since I also have two on the autism spectrum and one medical m
  12. I have been to both Rochester and Arizona. I went to Rochester in 1999 and we stayed a week. This was in the early days of testing. I had some lab studies, the tilt table (which was deemed experimental at the time so we had to pay out of pocket!) an EEG and then I saw the doc again before we went home. It was worth it because I knew what was going on. I spent 2 years in a rough patch then got better. Symptoms flared up again starting last year, so since I am in Arizona now and my insurance covers Mayo, my husband said, go ahead. It's taking longer since I am local, they space it out, but at le
  13. When I have gotten fluids it usually lasts about 36-48 hours for me, but stuff seems to linger in my system- meds, numbing from the dentist, etc. I WISH I could get a script for fluids. My primary is willing to get infusions set for me, but she wants a directive from Mayo. I would just like to be able to get fluids when I need a bump.
  14. Mytwogirlsrox, I have TONS of allergies. Levaquin, Zithromax, Doxycycline, Hops, Christmas trees, cats, pot, bees, strawberries, (these all cause severe reactions) and who knows what other environmental and food allergies that I have. When I was a kid I was literally allergic to everything except rice and carrots. Now, I can't eat rice because of my tummy issues, and I am running out of choices of things that don't make me feel sick. I am having the food allergy panel done to check for the delayed reactions, not just the immediate ones. I have horrible bloating, pain when eating etc. I've lost
  15. I figured the swollen legs were pooling. The next day I played in a tournament and I had my legs propped up on a chair next to me. Told them it was medically necessary. It totally helped. I rarely drink, and I had been super hydrated so I would be surprised that a small sip of alcohol would cause me to react but you never know! I've had reactions to all sorts of things over the last year or so. It's weird to me that it happened there because it is an environment that I am very comfortable in. I know all the staff and the place isn't "new" and the group is kind of like a big weird family reunio
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