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Nan

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  1. I'll try to make this short. Two years ago I got sick, one year ago I got diagnosed with dysautonomia and POTS (not by neurologist). My neuro after two years has decided now is the time for testing and medication. Currently throwing around the idea that I might have Lupus. So for the past 8 months or so I haven't gotten worst and I haven't gotten better. I am high functioning and really want to go back to work. Have even been looking around for jobs. My boyfriend and his mother (whom I no longer live with) still want me to go the disability track and take more years to "get better" and provide a "safety net". They are concerned that if I go back to work I will end up back in the hospital and with no possibility of money coming in. Well I just got a date for my hearing-in January. I am currently living with my Dad and taking a loan for living expenses. So obviously he really wants me to go back to work. AND to add to the mix my therapist thinks that if I go back to work I will get better. I am a little bit scared/concerned that me going back to work could blow up in my face. I am just wondering if anyone have similar experience. Did it work out for you if you went back to work? Did anyone go through the disability track? How did that work for them? Thanks,
  2. I don't do salt at all, and I haven't. I follow Dr. Fuhurman's diet, which is no salt, oil, fat or sugar. It has helped me immensely. I notice when I cheat that I start having problems real fast.
  3. I am currently seeing a gastro and yes I have had my labs checked during the episode. Because of memory and confusion I am not very consistent with my vitamins.
  4. Wondering if anyone else is experiencing this: Every now and then I turn yellow or orange with swollen lymph nodes and slightly increased confusion. My liver enzymes are normal and "fine". Stumped the doctors.
  5. Hello! I went to Mayo in MN last year. This was right after I got sick. I was hospitalized in May and went in September after exhausting all doctors in my area. So I didn't have all my symptoms yet and I didn't have my POTS symptoms. I was there for three weeks seeing multiple specialists and was eventually put in the category of Central Sensitization Syndrome and was place in a class on how to learn to manage the symptoms I had. When I ask the neuro there if I had dysautonomia I was told no, when I asked the clinic that I went to for the class they said it was a possibility. The way Mayo helped me was one it told all my doctors at home I have a diagnosed illness and it helped me retain me long term disability through work. Other than that, I didn't find it very helpful and felt like I was chasing my tail.
  6. Thanks for the information. I was wondering if hormones play a role. Currently getting my hormones tested and will be trying bio-identical hormones.
  7. Hello, I also suffered from severe constipation. What is working for me right now is that I take a really good probiotic every morning, digestive enzymes before meals, I have radically changed my diet to vegan. It took about three months but now I am going almost every day and couldn't be happier.
  8. I need advice how do you all stay positive with everything you are going through? I started getting sick last year and have been semi positive up until this summer when it became apparent that I would not long be able to get back to my old life. It is compounded with the fact that I am having trouble with my significant other. I current have no other options except to live with him. My family walked away from me and my friends. I don't have that much finances to take care of my self or the ability to take care of my self fully. So he tells me last night in an ultimatum that I need to be more positive/happy or its over. Need some advice on how to accomplish this when my whole life is in turmoil.
  9. ASHC, In June I started to eat raw vegan/vegan and have been doing much better in regards to fatigue. I am now able to do more around the house but am still suffering form extreme confusion and occasional episodes of POTS. Which my fiance also finds annoying. Before this diet thought I could barely get off the couch.
  10. Hello! I am new here too! I have also been newly diagnosed with POTS and dysautonomia in February. It took me about about a year to get diagnosed. My "friends" all initially wrote it all off as anxiety, my neurologist initially was going to write me off as a head case until I went to Mayo in MN and they diagnosed me with Central Sensitization Disorder. I didn't get diagnosed with POT and dysautonomia until I had a fainting episode in February. Currently I am doing a vegan diet and trying to get my family on board with a raw vegan diet. It has helped me tremendously-more so with the raw vegan diet. My BP gets super low, as well as my oxygen saturation and my HR skyrockets, I also deal with extreme confusion, extreme fatigue. I haven't been prescribed any medication and I am just taking one day at a time.
  11. I always bruise super easy. To the point of not knowing how I have gotten a bruise and some of them are pretty bad.
  12. So my Fiance and I had a bit of a falling out, due to a transgression that I committed ( I was in the wrong), this part doesn't matter. Because of this a lot of things came out about me being sick. He commented that I NEED to start being a more positive productive member of the household. Basically I have been too lazy since I have gotten sick. Even at my sickest I still tried to do something, like laundry, getting trash ready or some cooking. Now he literally is on me everyday, commenting on this needs to be done or that and will text me through out the day to see what I am doing. How does everyone else deal with family members? I know me getting sick last year has been hard on everyone, but I am stuck at these comments from him. Just need some advice.
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