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WinterSown

Volunteer
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    648
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About WinterSown

  • Rank
    Advanced Member
  • Birthday 08/23/1957

Contact Methods

  • Website URL
    wintersown.org

Profile Information

  • Gender
    Female
  • Location
    Long Island
  • Interests
    Winter Sowing, metadata, learning new things everyday.

Recent Profile Visitors

1,624 profile views
  1. I lost my thirst when my symptoms came on, lost my appetite and 60 lbs too. I can eat better now but thirst is still a bit problem.
  2. Yes, there's a weekly or yearly charge. We first started with the weekly delivery charge then opted to pay for the full year which gets us free deliveries all the time. Some of the grocers may have specials where if you purchase a minimum amount you will get free delivery. They all have their gimmicks. I just finished filling my cart there. It took less time this time because I am getting better at ordering. I use PeaPod by Stop N Shop. I think a lot of them have similar rules for membership. https://www.peapod.com/home
  3. I've been getting delivery once a week now for a while. There isn't a week that goes by I don't buy three of something I don't remember clicking on, but that's happening less. I've learned to sort for specials and stock-ups, it does make cents, too.
  4. I've been knocked out five or six times by doctors in the last four years since my symptoms began. I've never had a problem. Scoping is quick, your biggest worry is that if they are running late you may not be eating until late afternoon but that can happen.
  5. I was diagnosed at 59 and have had a wonderful lifetime of diseases, virus, accidents, concussions, even got bit by a brown recluse spider, etc etc. My doctors and I made the decision together to not look for cause but to concentrate on reducing the symptoms and their effect on my life.
  6. Heat and sweat can also effect your numbers--summertime is sweaty time 😞 You can try to eat more foods that are potassium-rich, it's a nice list and you probably already eat these foods--so eat them more often. It's all yummy stuff. https://www.webmd.com/diet/foods-rich-in-potassium#1-4
  7. Yes, that's fine. The benefits of exercise are accrued.
  8. You increase the setting to make it a little more difficult but you don't increase the time until you are quite comfortable at the higher resistance. I don't use a rower but I use a resistance bike at PT where they slowly build you from beginner with no resistance to 'better' with resistance. Most important is to not overdo it so that's why you don't increase the amount of minutes when you're just starting to strengthen. Always stop before you feel it's a drain because you will get turned off from it--go at your pace and move to higher levels whe you think you can handle it. Also, go back to lower levels when you need to. Some days it's better to set it to three instead of six, we all have extra-low energy days--it doesn't make sense to do a lot when you can really do just a little. Listen to your body and keep at it! I truly believe that exercise, in any form, is going to increase your stamina and strength. You look better for it, too.
  9. I take a benadryl to knock down paresthesia. This is a thousand times better than getting lockjaw from tet. I've had lockjaw and it dislocated at the left side under the ear, it's super super painful. You can die from tet, if you haven't had a vaccine in over ten years they'll give you one because it is a very painful death and they don't want that for you. You're lucky that it's only pins and needles but it is temporary. Feel better soon.
  10. If you don't get outside you can't see the fun world around you. Catching a bee fanny in a photo is a joyful thing.
  11. RLS feels like you gotta dance or get up and walk or do anything to de-energize your legs. I've not experienced lightning bolt pain with RLS but I have had that with sciatica. Definitely see your neurologist, if you don't have one ask your cardiologist for a recommendation and they'll hook you up with someone who will also understand your dysautonomia. Sciatica hurts like mad but it it very treatable, I am sorry you are hurting and I hope you can get some help soon. An epsom salts bath and aspirins may give you some relief in the meantime.
  12. I like Bentyl for calming down my gut when it's flaring. It doesn't work immediately but in a few minutes I can feel it all settling down to a dull roar. It's not perfect but it is a great improvement. I have not found it to effect my vitals in any way. It works. https://www.webmd.com/drugs/2/drug-5245/bentyl-oral/details
  13. I just got back from PT. Not only does the exercise make you calmer but I've found that when I shower afterwards I am less likely to faint in my shower. I do believe the innervation is what the deciding factor is--I am just better oxygenated and stronger to withstand the sensations and not collapse from the steam and heat in the shower. It's happened a lot more than once. I am really sold on exercises being a major management tool for dysautonomia. All my doctors have told me they will keep me in PT for as long as I need and that's forever. Cool beans.
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