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About Edin

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  • Birthday 10/20/1994

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  1. Hello everyone, it's been a long time. Even though it doesn't feel like it I am getting slightly better and can do more even though the amount of pain is the same. But, because I can do more I am running into problems that I'm just not prepared for. First I'd like to ask a board question that I'm sure can help others as well: How do you keep some aspect of your independence, no matter how small, despite your illness? And as for the major reason of why I writing this: I've been threatened to be kicked out a few times now, but last night I just barely avoided it and I don't know what to do when
  2. I recently went in for a skin biopsy, 'an evaluation of small fiber neuropathy' and some interesting results came in. My doctor told me that these small nerves are pretty damaged, in his words they are swollen, frayed, and splitting. So I now have some hard proof of what is causing my pain. Nothing is set in stone, it's just his speculation, but he thinks my immune system is what damaged it. (I got POTS from a virus and this virus is probably what damaged the nerves, which in turn gave me POTS) He is thinking if he blocks my immune system it will give my nerves time to heal and that I can reco
  3. So about a month ago when I finally got in to see a doctor they asked me if I got unexplainable bruising and I said no, but it finally clicked in today that I do. I guess it was stuck in my head that I would bump into something and just end up forgetting about it. But when I looked down today I noticed I had a lot more bruising than I could forget about. So I was wondering do any of you get bruising? And do you know why? For those of you who are curious, here is a picture of my legs where all my bruising is at. http://i42.tinypic.com/2ef5hxl.jpg (Sorry my legs are pretty hairy, it's cold and y
  4. Susanhs, those are the type of attorneys I contacted. It basically came down to, because I don't have any semi-recent medical documents, they can't build a case. (It's been about 3 years now. And I'm pretty sure my young age doesn't help me either.)
  5. After talking to quite a few attorneys, they all said I don't have a case. It's really disappointing, but it's not the end of the world. My mom said she'll continue to support me and will make some changes herself. This is just another rough patch, we'll get through it. Thank you for all your help.
  6. For me the TTT was a very tough battle of will power. It was pretty short I remember, I was in the upright position for only 10 min. From what I remember I had some sort of IV in my arm throughout the test and I took a breathing test in each position. I'm not a fainter, but I was barely holding onto my consciousness while I was in the upright position and my legs felt like they would buckle under me any second, but I pulled through. My mom told me afterwords that my laying down bpm was 90 and my upright was over 300. I'm not sure if it was what they gave me, my body just not liking the test, o
  7. I've taken the first step and sent a form for a free consultation with a lawyer. I'll let you all know how it goes.
  8. Anna, they did ask me how long I could stand up and I said only for 5-10 minutes, I also said I could only sit down in a chair for about an hour. Dana, no I applied for SSI. I think my mom tried applying me for that when I was sixteen but they said she made too much even when she was on unemployment, which she is no longer. And about the lawyer, do I have to pay out of my pocket for them, because if so I can't afford it. I'll talk it over with my mom when she gets back tonight.
  9. I got the letter today, sadly I've been denied. It said something along the lines of: You said you are disabled because of POTS, CFS, and GERD. (It didn't even mention my Chronic headaches which is the worst symptom I have.) Your current symptoms are not severe enough to be considered disabling. Evidence does not show that your ability to perform basic work activities is as limited as you indicated. That last sentence felt like a punch to the gut... but anyways, it says I have 60 days to appeal if I want to. My mom told me to just give up because they are probably taking my age into account (1
  10. This is really interesting, I think I'll try it out once I move out of my apartment sometime next year. I definitely noticed I feel a bit better being outside surrounded by nature, but I thought that it was because I really like it and didn't associate it with my health. For now though, I think I'll buy some potted plants to put in my room, to bring the nature to me.
  11. Oh wow! That's fantastic! I hope you both have fun at graduation, be sure to remember a camera!
  12. I don't have problems with heat as much as you, but I was definitely shocked when I moved from Oregon to Texas during the summer. I can't go outside very often or for long periods of time, so most tips I have probably aren't long lasting. I found it's best to just try to go to one air conditioned place to the next. - I have a jacket sort of like this one, windbreaker/waterproof type of material but still really light weight. I like to put it in the freezer over night (and if you have inner pockets you could put an ice pack in there) and it would keep me cool for a few hours. It may be a good a
  13. I'm not male myself, but I have some hair problems. My hair use to be really thick, soft, and curly/really wavy, but now it's a pretty sad version of itself. I've lost a lot of volume, it is no longer soft and feels kind of grainy, and limp waves. When I brush my hair, the hair loss doesn't seem out of the normal healthy range, but my hair is nowhere near how thick or 'big' as it use to be.
  14. I think it went alright. It was a lot more basic than I was expecting actually. We went over major symptoms, checked the regular stuff, did the resistance/pushing test, grip, walking/balance, and a few other basic stuff and that was it. Though one thing I found odd was when she was pressing on my back my spine actually hurt a lot more than the muscles around it. Anyways, I think it went okay, mostly because as I was leaving she told me something along the line of 'It must be hard living with those symptoms.' I'm not sure when I'll hear back from social security, I actually forgot to ask.... bu
  15. Thank you very much you two! And I hope your appointment goes well, angelloz. I'm feeling better after cooling off. I think a lot of it was initial shock. I'm doing my best to pump myself up, and I start to get a little excited when I think of it like: if I can get through this, well I'm just that much closer to getting an approval or at least I hope so. I'll be working on a list to bring with me tomorrow, so I think I should be prepared when I go. I'll let you all know how well I think it went.
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