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Wufflebear

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Everything posted by Wufflebear

  1. I have been wondering if I could/should get a service dog. I pass out without warning maybe only once every 5 years.. and get hurt. The rest of the time I pass out with warning and dont get hurt but as we all know that is only part of the problem. I get dizzy or turned around and confused in stores, bad brain fog etc. etc. etc. So A dog to warn me about a no warning faint, a dog to help me out emotionally when I have to lie down in public, a dog to maybe even warn me when I am pushing myself too far and end up doing something stupid as I am do foggy and ddizzy to really be doing that.. especially with kids now I find that I can push myself too far. Not even sure if any of this qualifies as dog worthy! My mom and kids think so.. Thoughts??
  2. yes on a bad day Venetian blinds can drive me nuts as well. Thank you for responding. It is good to hear I am not alone on this one.. Folks think I am nuts when I say 'squares bother me." lol Can't blame them. it does sound a bit odd. lol
  3. Anyone else going? Kublacon in San Francisco
  4. no repeating patterns anywhere. Drivable grocery carts, Self driving cars, benches everywhere! I would move to Pots town so fast! lol
  5. I think, my opinion, that anything that puts stress on our systems can cause us to feel sicker. Our bodies just have to do so much more work to do basic things.. So a cold, being tired, a time change etc. etc. can all throw us off. It does for me.
  6. Yup I get it too. I try and just relax if I can. Even 10 min with quiet laying down some where seems to help me for a bit.
  7. Happy Friday everyone! I have been noticing for some time that when my heart rate is higher.. 90+ resting or higher obviously standing up.. That I get really dizzy and confused. Some patterns I think make it worse. Squares seem to drive me nuts. Like in a mall or store with the square packages, tiling etc. (I have had this since I was in Jr. High). Is that part of being dysautonomic? Or is it a vertigo type thing? I got into a store the other day and got so dizzy and confused it took me a while to figure out how to get out.. Not fun. Does anyone else have issues with patterns or visual things messing with their head?
  8. Thank you. Yes it is tempting to tell becasue between the autonomic dysfunction and the visual vertigo, some days are not so much fun.. But I have lost jobs before for this thing.. I might have an in person talk with my immediate supervisor (and friend ) and see how that goes. I work from home, but I am supposed to go for a site visit this winter..
  9. Hello all, It has been a while since I last postd. I work from home now (last 6 years or so) and things generally are better. Idont faint as much for sure. I still have brain issues though. I got hru periods of just being so confused and dizzy. I got lost inthe store yesterday.. So for working, I make fore mistakes but I am not sure whether to come clean with them (worked with them for a few years) or not. Normally I make very few mistakes but right now (and periodically when it gets bad) i make more than I like.. I know, I am human and hate to be remidned of that, but right now is kind of yucky. I have hd this since I was 3 and was not diagnosed till 34, so my tendancy is just to put up and shut up, but man.. I wish sometimes folks knew and could allow me some slack.. Thoughts?
  10. I have not been diagnosed with it, but I do office work all day from home and the last two years I get bouts of it. Used to just be a finger or two.. Now it is all fngers and the left thumb. Makes typing a tad weird. /:
  11. I did a total juice fast (with a juicer) last summer for 2-3 months but found the amount of standing prep time too much. I got a nutribullet a few weeks ago and do breakfast and lunch with it exclusively. 1c kale 1c spinach 1/2c broccoli 1/8c flax seed or 1/8c chia seeds raw 1/4c blueberries frozen or 1/4c strawberries or 1/4c apples or 1/4c grapes 1/8c cashews or 1/8c pecans 1/8c hulled sunflower seeds (raw) 1/4c frozen banana This comes in (after fiber is taken out) at just under 30g carbs... so good if you are diabetic or trying not to become diabetic. Dr Oz also recommends Raspberry Ketones (supplement). Anyone taking that?
  12. Thank you! I will have to go check out the other thread.
  13. Hello I juiced for breakfast and lunch last summer for about 2 plus months and had some issues (Pots acting up but also having to stand so long to do it..) so I quit. Then about a week ago I started using a nutribullet to make breakfast and lunch.. broccoli, kale, spinach, flax seed, frozen banana, frozen blueberries, pecans, sunflower seeds... Since I had gestational diabetes with my son (5 years ago) I figured the fiber from using the nutribullet would be a good thing.. The nutribullet is super fast to use and since you drink right out of the cup you blend in, clean up is easy.. Ie: no long standing for juicing or clean up. The last few mornings my body has been sending me warnings.. sugar levels felt unstable.. then this morning the tunnel vision started.. I also started taking Raspberry Keytones, resveratrol and a multi vitamin.. Does any one know of any veggies, nuts etc that can help? Maybe I don't have the most beneficial blend.. or maybe I am not getting something in there that I need.. or maybe the suppliments are messing with me.. Anyone else juice or blend for meals? Thanks!
  14. I am wanting to finally apply for disability from the government but not sure what code to put in there... What is the catagory those of us with dysautonomia w/ tach and syncope fall under?
  15. I get the shots periodically for bursitis in my hip and they dont bother me. That being said, I just finished a bout of prednisone (oral version) and it totally kicked my tushy...
  16. Yea, standing jobs are bad. I tried when I was in high school, college and beyond. Sometimes you can convinse them to give you a stool and maybe some back office work... That can be do-able but only when I did it part time...
  17. I was taking indurol before I got pregnant.. It did help. I did find however that my body adjusted to it, so we had to monkey with the dosage every 2-3 weeks which I felt was a bit much.. The other way I have used it is to just take it during bad spells.. Then I can keep the dosage down.
  18. Hi and I am so sorry you had to suffer thru that. I have been fainitng since I was little and I think the key is to try and figure out what you feel just before it happens... That way you can get down and minimize the damage..or get out of the room from where the kids are. My daughter has only seen me faint once and it did scare her. But she laid with me for a long while and we talked about what happened. <<Hugs>>
  19. I work and have pots w/ syncope. Granted I use up all my sick time by June and then end up w/ lots of unpaid time but my employer has been understanding about that. I have a reclining chair w/ foot rest and I have to use that to work. Sitting w/ my feet down really can bring on symptoms. I also work w/ my boss so I know what i need to do when... For example: 8-9 emails and personal projects, 9-10 do online class, 10-11 self paced projects, 11-12 take support calls, 12-1 lunch, 1-2 do online class, 2-4 take support calls, 4-5 self paced projects. This way if I am having a good day I can be really productive and if I am having a really bad day the self paced project time serves as a kind of down time for me and it allows me to pace my self thru the day. I also have my husband cook, as I can't stand that long. And do sit down showers and hair drying w/ my kids. I shower at night, after the kid goes to bed, cause I am stuck in my bed for about an hour afterwards.
  20. Well we qualified for WIC. We had to have a 'risk factor' and POTS qualified as a risk factor. Boy I am not used to POTS helping me out any! Usually it is the other way around. lol I gave them the site address for potsplace.com and they said they would check that out. I am very very glad we have this place to help us inform others as folks tend not to beleive in things they have never heard of.
  21. Yea, we have an appointment w/ the local WIC office on monday since I will be near there getting blood work done anyway. I may stop by the food stamps place too just for the heck of it... Anything will help, anymore...
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