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Allene

Hi There

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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 :D

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welcome to the board. there are some amazing people here. I am a "newbie" myself but have found it to be very helpful. Where in TX are you? I am originally from Dallas area but am currently living in CO. I completely feel you on the wheelchair issue, we have started the long journey of deciding to get one or not. I am sorry your family isnt more understanding. I hope you find relief from your symptoms soon and can get your doctor situation solved.

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Welcome! I just joined the forum last month and it is a ton of help and relief for me. Nice to see someone around my age, I am 20 so I know what your going through, I recently just left my awesome internship and university summer classes and moved back in with my parents which was a huge bummer for me. I was diagnosed when I was in the 10th grade with POTS, and this summer has been really rough for me too. I also have IBS, and a gluten free diet and eating six 200-300 cal meals a day helps me the most, I don't have much of an appetite lately. I never went about getting a wheelchair, most days I am not that servere, but if it helps your mobility and going out I would do it, I know how annoying it is to turn down social events and going out with friends.

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hi allene, welcome to the forum!

i'm sorry to hear your family doesn't understand your physical problems. there is a lot of information here on this board that might help them undestand, you could print some parts and ask them to read.

i hope this forum will help you get the answers you need and that being around "dysautonomia pals" will bring you some comfort.

take care,

corina :)

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Thank you for such a warm welcome!

I live a little ways north of Houston. It's been pretty hot here this summer. Every day over 100ยบ! But I've been keeping cool inside, and only venture out when necessary.

I've been stalking browsing this forum for a week or so and I've found it very helpful. It's really answered a lot of questions, and confirmed several things that I thought could be related.

That's a really good idea, to print things and ask my family to read it. I think I'll do that! Especially where wheelchairs are related. They do seem to understand that I don't feel well, they just don't get it that even though my legs function that I have such a hard time getting around. They don't understand how unwell I feel. I've been tempted to use the powered carts when grocery shopping, and I think I might start doing that. It would be killing two birds with one stone. Giving me a break from walking all over the store, and getting my point across that I'm serious when I mean I really can't be on my feet that much.

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Welcome to the best forum family who will give you a lot of support and love. There is so much information on this site and the sharing by others of what works and doesn't work. It helped educate not only my family but close friends too. They were much more understanding after reading the information and some of the posts I shared with them. Have you thought of having your Florinef increased or trying another Medication? I wasn't able to take Florinef, but Midodrine got me walking and being able to do little things around the house again. I was bed, couch & chair bound before Midodrine. I even returned to my job, which is mostly a sit down job working at a desk. I do have a wheelchair and a Rollator Walker (a rolling walker with a seat). I use them when I am going on long excursions such as to the mall, outings and feeling fatigued which is upon rising in the morning and usually in the evening. I do go to stores such as WalMart, Giant Eagle (I live in Ohio) and stores that have motorized scooters with carts. It is fun driving them in the stores. Some of the Malls have them too. I do have 2 teenage daughters and they help push me in my wheel chair when I need it. Their friends are helpful too. They think it is cooI pushing me. I really think they like me to hold what they buy! LOL I try to use my Rollator Walker when I am feeling my best. It has a basket under the seat and if I feel tired, I sit down and rest. I also spend time studying the stores layouts-finding spots to sit down. I have even called certain stores to find out what type of accommendations are available especially seating, restrooms and emergency preparedness.

I was fortunate to get my wheelchair from another family member not needing it. Try Craig's List, 2nd hand stores or word of mouth as you may be able to get one inexpensive and or possibly free. Good luck and again welcome :)

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