Allene Posted August 11, 2011 Report Share Posted August 11, 2011 Hello! I'm Allene. I'm 21 and I'm from Texas. I was diagnosed with autonomic dysfunction in January, but I've been suffering from progressively worsening symptoms since 2008. In February I was in a wheelchair exclusively for a few weeks until the treatment my doctor prescribed started kicking in. He gave me florinef and thermotabs and told me to drink 48 fl oz a day minimum and to have gatorade on a regular basis. Also he told me to cut out caffeine from my diet. For a few months I was almost back to normal. Unfortunately, the symptoms started creeping back up on me around May, and I'm nearly at the point of needing a wheelchair again. I faint twice a week, give or take. I get pre-syncope multiple times a day. I can't lift my arms above my head for very long, kneel, bend, or lift anything more than 10 lb. My family doesn't understand that just because I don't look sick doesn't mean that I'm not sick. I have IBS, which I'm treating with a radical diet change (it's been working so far). I've been to my PCP a few times, but he doesn't really have a good grasp on the illness and doesn't know how to treat me. My insurance only covers one trip to my cardiologist a year (my cardiologist diagnosed me on a routine check up. I was born an atrial and ventricular septal defect, which was repaired when I was 4 years old, and I also have mitral and tricuspid valve regurgitation.), unless I have a referral, so I can't just go back and see him. I've been trying to talk my family around about getting a wheelchair again, but nobody seems to understand that walking causes me to feel faint, get a headache, and it drains my energy. They think that because I can walk, then I'm fine. I can't stand for more than 5 minutes at a time. I had to quit my job in Feburary because I couldn't do it anymore. I am unable to attend my university because I sleep 12+ hours a day (more if I've gone out or done something the day before). My arms go numb at night, due to low blood pressure. My lowest recorded BP was 50/40. Now my BP is more or less normal, but I'm still suffering from the symptoms. I applied for disability last week. I'm crossing my fingers that I'll get approved.My fear is that I'll continue to get worse and become bed-bound. As it is I'm almost home-bound. I have to turn down invitations to events all the time. My friends want to go out with me, but I'm just too tired to go most of the time.I've found this wheelchair that I'm interested in. I used to despise the idea of a wheelchair, but now it's more appealing. If I could get out and about and not worry about having to sit and rest every few minutes, I'd be happy. I like getting out of the house to go grocery shopping and things, and I think my quality of life would improve if I had a wheelchair. I'd encounter other problems, such as getting the wheelchair in and out of the car (who's gonna do it once I can't anymore?), and my living arrangements (my room is currently on the second floor), but I'm sure my family and I will be able to work it out. Once I get them on board anyway. The only big issue would be the cost of the wheelchair. I'm not sure if my insurance will cover it at all. I rented a wheelchair for a month when I needed one last winter, but I hated it. If I'm going to be in a wheelchair much of the time, I want one custom built for me.Anyway, I just wanted to introduce myself and say hello Quote Link to comment Share on other sites More sharing options...
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