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Everything posted by Edin

  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 the time does come that it will happen. I've been sick since I was very young and have just recently been well enough to get out in the world, but I've never been taught how to survive in it. I'm almost 20 now, but I don't know how to be an adult. I can drive, get my own groceries, and manage my bank account, but that is the end of the line. Things like rent, paying bills, taxes, or anything else I have not a clue about. Do any of you know some sources or can tell me through experience about these kinds of things?
  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 recover. So this is great news if he is correct. Sadly he is retiring very soon and is going to send me to a new doctor downtown. I'll either be getting a call or calling them on Monday. I'm quite excited, this is the most progress I've had in years.
  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 you know how showers are exhausting.) Most of the bruising is on my right leg, if you look closely you can see the ones on my left though. I also have one on my left knee that isn't in the shot.
  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, or both. I was really worn out after the test and had to be taken out of the hospital in a wheelchair. Whether the test is hard or not for you, I hope you get the results you are wanting. I wish you the best of luck.
  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 (18) and the fact that some people can recover. After asking multiple times if I should appeal, she just said I can if I want, but it doesn't sound like she'll be very supportive with this. What do you all think I should do?
  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 alternative until you can get a cooling vest. - Parasols might do you some good for some portable shade. - If you need a quick breeze on your neck or face a hand fan might work. - If you carry around a water bottle with you, you can fill half of it up and put it in the freezer over night to turn it into ice and then fill up the other half before going out so you have some ice cold water, plus you can use it for an ice pack. (Don't try this with gatorade, it turns into this weird gel/mush instead of ice and tastes horrible once it thaws.) - I haven't tried it myself, but I've read mint lotion can help you feel a little cooler. - If you are starting to feel really hot and need a quick fix, try going to a restroom and dampen a paper towel and run it across your face, neck, lower back, wrists, anywhere you need to. - When indoors, if you can, try taking off your shoes for a moment. A lot of heat often gets trapped in there. I wish you the best in staying cool!
  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.... but I'll post an update on the result.
  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.
  16. I applied for SSI a few months ago and instead of getting a letter of approval or denial they scheduled me for a medical exam this coming Wednesday. I know it's not out of the blue since I haven't been able to go to the doctor since 2010, but I'm still really stressed out and overwhelmed. Mostly because I have to go alone; I've rarely gone anywhere without my mom since I became ill, let alone something this important. I know me being confused and slow with things will help my claim, but I can't help feeling so bad about this. Being approved for this is incredibly important to me, so do any of you have some words of advice for me? I tried looking up the doctor that I will be seeing to see if they are the type to keep things short or not, but they really didn't have anything about them. I was thinking, should I write out a list of the symptoms that keep me from working before I go? And if so, how should I organize it? I have a hard time focusing my thoughts and when I go in I don't want to forget something really important that might help me.
  17. Do any of you know of some mental exercises that help with memory and/or decision making? (Nothing hard, I need to start off with stuff you might find extremely easy.) I've noticed that my physical capabilities have been improving lately, now my mental capabilities is the thing that is holding me back the most. While I have not had any medication that has helped me, a little bit of exercise has, so why not some exercise for the mind? I've been really reluctant to try until now because my headaches become crippling the more I try to think/comprehend. But, I want some change and to try to help myself get healthier.
  18. Sorry I don't have any advice, but I can share my experience: I did the TTT a few years ago at the Mayo Clinic in Rochester, MN so my memory is a little fuzzy. I can't remember the entire duration of the test, but I spent ten minutes at 75 degree angle, no higher. The entire time I had something injected into my arm, not sure what it was. They also had me doing this breathing test at every angle I was at. Surprisingly enough, my heart beat got into the 300s. I was barely conscious at the time, but my mom told me the nurses were panicking a little and she had to convince them to let me finish the test so I could get some results. When they laid me back down my heart rate quickly dropped to around 90bpm. It was a very odd experience, at the time my highest bpm was in the mid 200s, so whatever they injected me with must have made it shoot up.
  19. I was able to talk to my mom a little bit today. She said we are uninsured and she makes too much for medicaid. She said I might be able to apply for it when I'm 18. And I outright asked if we can afford going to the doctors and she said no, though it was fine to start researching more now. But overall, it still comes down to waiting. It's a little hard. I've spent so long 'running away' from my illness because of money problems, but now I'm trying to face the problems and find a way around it and it all comes down to me not being old enough.
  20. May I ask how much going to the doctors cost for you all? I'm not sure I can afford it. My mom just got off of unemployment and her current job has no benefits. I'm not sure if I'm insured or not, but I do know that my mom is still paying off doctor bills. Maybe the money from long term disability will be able to pay for it? But I'm not sure how I'll be able to get to the doctor in the first place with my mom so busy and with us new to the state, we don't have any friends or family that can drive me. Maybe if I'm able to get my motorcycle license and a bike I might be able to make it. But either way I need to wait until I'm 18. And thanks for the other tips, I'll try to make a routine; routines have always been one of the hardest things for me.
  21. Have you found a lifestyle that works for you? Are you testing things out to see what works for you? How are you doing that? (I’m sorry if this is a little jumbled or repetitive, putting thoughts to words is very difficult for me.) I’ve been very confused on how to go forward lately and I was hoping some of you might be able to share your knowledge or experiences with me or maybe give me some advice. To start off, a little about me: I’ve spent most of my life in a very small town mostly cut off from the rest of the world. About half a year ago I moved north of Houston. It’s like a small city just outside of the big one or something. I became ill when I was 13 and became bed ridden when I was 15. While I was still 15 I flew across many states to go to the Mayo Clinic where I got a diagnosis. I have not been to a doctor since, so I do not take any medication. (I only drink gatorade to increase my sodium levels.) I am currently 17 and have been improving a little bit. I’m now able to go outside for a few hours at the most two or three times a week. School and work are impossible for me. A big problem I have is that when I was healthy I was never taught how to live independently and what that entails. And now my illness has given me a learning disability of sorts. (I have a constant headache that gets worse every time I try to think. Understanding things, conveying things, sometimes even registering my surroundings is difficult. The worse my headache gets the more difficult it becomes until the pain completely consumes me and I can’t do anything else that day but mindlessly watch videos or something.) I’m just barely starting to understand the world and the society in the usa. And I’ve realized that things are very difficult. A difficulty that I can’t find my way in. I’m completely dependent on my mother and I don’t know how to change that. I want to find a lifestyle that works for me instead of just sitting here in my room spending my time on the internet. I’ve been doing that for years and nothing else. I’m quite tired of it and want to change what is in my ability to. Though I don’t know what type of lifestyle is available to me or how to achieve it, I’ve been trying to think of ways to at least do something. I don’t fully understand, but my mom said when I’m 18 at the end of October she will try to put me on long term disability through social security. (If I do get it, it will only pay $600 a month.) And I am planning on trying to get my motorcycle license. I know it will be very hard for me to learn the manual and laws and what not and I’m not even sure I can physically ride a motorcycle or motor scooter, but I hope it’ll give me a form of transportation if I can. (My mother works long hours and can’t take me out much and there is only one bus in this small city which doesn’t even come close to my apartment. There also isn’t very many sidewalks.) I’ve been trying to find hobbies and things I like that I can do, but it’s not enough to form a lifestyle around. Nor do I like creating things, so making crafts and/or selling them isn’t really for me. I really don’t know where to go from here. If you could give me any advice or share your experiences, that would really help. Thank you.
  22. Sorry this is only off the top of my memory and I wasn't on it for very long before I got my GED. Another thing to note is that I was from a small town/school. (About 500 kids in my high school and my appt. was in walking distance or my mother would take time off to drive me home.) A few things that my 504 plan included were: Being able to put my feet up on the chair in front of me. Being able to carry around any type of liquid with me wherever I went. Only having to attend a few classes per day. (For example, I could start school with 3rd period, go home, and then come back for 5-7th period.) They had an online program, I believe it was called Dynamic 2020, that I took a few classes on to make up for the ones I wasn't going to physically. (This program was very easy for me, you could go at your own pace and could do classes while laying in bed.) Being able to carry my medicine with me. (Keeping it at the office, we didn't have a nurse's office, wasn't an option if I had an attack and couldn't get to it easily.) Extra time on homework, projects, and tests if needed. (I just had to talk to my teacher and say I needed extra time.) (We didn't have any extra lockers or books to spare, so I used a roller back pack or asked someone to carry it for me. I also already finished all my p.e. credits by then, so I didn't need to worry about that.) I wish you luck in setting up a plan that works for your child.
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