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April, hope you are doing OK. I was thinking about the subject of isolation as it applies to those of us with this illness. I'm sure most of us have made our homes as comfortable as possible. Where we have access to everything we need deal with our symptoms. It was a holiday weekend and I had the chance to travel a little and go visit some family. Part of me always wants to just stay home and not experience any more pain than I have to but being alone all the time stinks too. I decided to go visit. The 2 hours driving there and back left me a wiped out (I know I should feel lucky I can still drive), I got a sinus infection and had a really bad headache that night at the hotel. I'm glad I went but sometimes it just doesn't seam worth it. I'm guessing most of you can relate to this.

You sound like a great nurse. It looks like you have found other ways to help people with your knowledge.

I tried midodrine one time. I couldn't stick with it. I only took it a few day and had stomach problems. I do wonder if I could have stuck with it longer if my stomach would have adjusted. Can't remember the dosage. It was the first thing recommended by the neurologist I saw at Mayo.

Thank You Stace and Bella for the kind words.

The title of this post got my attention. The answer is yes. I have been dealing with symptoms of dysautonomia since my teens. I didn't get diagnosed until a few years ago. At least my family can stop thinking I'm a hypochondriac. I know I was starting to think I was! LOL I've lived alone for many years and have a hard time keeping contact with friends. Life hasn't been great and it feels like it just gradually gets worse. I try to believe things will get better someday and I won't be alone forever. I'm closing in on 40 and starting to have doubts. I found this forum last year and it has helped me find people who understand what we are dealing with. Hang in there April. I hope you find a job or it finds you.

Thanks Jennifer, Jana, Flop and Dawg. Your comments helped me through the day. I didn't work and I didn't go back to sleep all day. I don't know how I stayed awake today. I actually walked a few laps inside my apartment while listening to the iPod. Hopefully I will be pretty tired when bedtime rolls around. YOU can never tell. bluesman

Thanks Jennifer, Jana, Flop and Dawg. Your comments helped me through the day. I didn't work and I didn't go back to sleep all day. I don't know how I stayed awake today. I actually walked a few laps inside my apartment while listening to the iPod. Hopefully I will be pretty tired when bedtime rolls around. YOU can never tell. bluesman

Glad to hear your TTT went OK. bluesman

Lets hope you find some answers. bluesman

Well here I sit. my back hurts my head hurts and I might I've slept 4 hours. I have to decide whether or not to call in and miss work again. I know i can't last long during the day on such little sleep. the only thing i haven't taken that will give me relief is klonopin. i know it will make me too tired to work. i really hate this. i feel angry alone and hopeless. My weight has dropped from 136 to 130lbs and I don't know why.

Jana I'm so sorry to hear about you fiance. Here's hoping he is going to be OK. It's tough feeling like you can't help but I'm sure your emotional support is very important right now. I hope you can find some one to help with the physical things that need to be done. Thinking of you. bluesman

Good news.

Morgan This is sad news. I'm still thinking of you.

I hardly sweat at all and I'm a guy. What happened to men perspire more or is that just in commercials? When I get in a vehicle during hot weather that burst of heat make me feel sick and nauseous.

I remember my heart racing at around age 12. I never thought anything of it. I figured everyone must have this happen. A doctor with a stethoscope finally heard it when I was in my late 20's. Then I had an echo to confirm the diagnosis. No wonder this illness is so hard for people to understand there is no consistency with symptoms. I've never passed out. Maybe I will someday as I have felt close.

I was wondering who here has been diagnosed with mitral valve prolapse. I was diagnosed with mvp about ten years before I was diagnosed with dysautonomia.

A new quality window air conditioner seems to keep a room cooler than central air. Make sure it is rated for the size of the room or over rate it if you like an ice box.

In my 15+ years of trying to get diagnosed I would have been OK with a terminal illness just to know what was wrong with me. I don't really remember what it is like to be healthy. It's like I'm aging at an accelerated rate. Chronic Illness is something that just seems to be never ending. The phrase I have read is "lifestyle threatening." If some one had to change their diet to mine and stop doing some of things I can't do they would not be happy. I had a counselor one time ask me to try and put a positive spin on my illness. No matter how hard I tried I couldn't do it. I read a pretty good book called "Just Fine unmasking concealed chronic illness and pain"

Hey Nauthiz I have so many unexplained aches and pains I usually just blame them on the dysautonomia. I'm sure someone smarter than me will chime in.

I can relate. Talk about a confidence killer. I have been telling some people I have a memory problem. Names and numbers are the worst. I try to read and do a few soduoko puzzles which are hard for me. Sometimes I'm very calm acting but the wrong words are coming out. I was trying to chat with someone online the other day, something I never do, and my hands were shaking so I confessed my anxiety and that ended that chat. Hang in there Chrissy.

I'll stick with a robot dog. I think I'll call him Zippy.

Thanks BellaMia I love animals but I can't really live in a place with pets. I have terrible allergies and they cause me to have trouble breathing. And I sometimes break out in small itchy bumps. I wear a dust mask when I see my brother during the holidays. I don't want to take anymore medication than I have to. Along with certain foods, pets are just something else I can't have. Maybe I'll get a robot dog.

Thanks for the advice Nauthiz My social life is getting worse as my friends are busy with their own lives. Truth is I look pretty horrible.

Thanks for the replies. I have pretty much given up for now. Things have not been good.

Angela Sorry you are in such pain. I hope you have some kind of medication for relief. Hang in there. bluesman