Help needed

[Ling]

Dear All

Can you please let me know where some of your currently stand with you sicknesses. I told my doctor on Tuesday that some of you don’t work and have or are bed ridden. She could not believe it at all I would love to show her a letter from all of you.

I am presently working full time, have a part time job every 3 weekend. I study part time and involved in the youth of our church. I am happily married and do 90 % of my own housework and have a beautiful black spaniel baby at home. Presently I cant do any form of exercise as cleaning my kitchen floor exhausts me. The longest duration I have spent in bed was about a month. I have been living at doctors for the last 9 years and have spent a fortune and I don’t believe I will ever feel normal again.

[MightyMouse]

Ling, your doctor is misguided to believe that POTS and related disorders cannot be completely debilitating...or even fatal. My friend, Brent Chance, passed away 2 years ago from autonomic dysfunction. His GI functions stopped (gastroparesis) and he lost a great deal of weight. Even with a feeding tube, he was unable to get enough nutrition. Eventually, his other organs gave out.

Personally, I had a one year period when I was unable to work. While my problems have not been as severe as some folks, I've had my fair share of major setbacks, such as my gall bladder ceasing to function, having longstanding GI related pain from very slow motility and spasms, nausea, multiple episodes of pneumonia, swallowing problems (Dan Jacoby can speak to that one, as his have been quite severe at times!), etc. Then, of course, there is my every day dizzies...

Nina

[Guest Julia]

Apparently your doctor has no business being a doctor. I really feel for you. The last thing you need is a Doc who doesn't understand the ANS.

The ANS controls the homostasis of our bodies. Digestion, Heart rate, Blood pressure---and endocrine system is a huge part of our being. What is wrong with some of these Docs. It's just plain common sense-- ---of course i'm meaning the Doc's---not the average non medical professional. A lot of people are unaware of the vital role the ANS plays to keep us alive.

I'm doing much better now other then some spinal (neck/ brain stem compression) issue's that do still affect my ANS. It's complicated and long---mostly, my symptoms come with exertion---which makes sense. When I was working there were a lot of chemical fumes that would leak through the ventilation system to the front office. I think that was what made me crash with the worst part of my POTS. I simply could not process the toxins due to severe spinal stenosis. I started to get better on my own after leaving the company.

There was no way I could have worked when I was so symptomatic. I was an office manager and had multiple tasks every day. I started getting sick in December 2000 and somehow managed to stay working until March. I was bed ridden the whole month of March. One time I went to work near the end of March and failed miserably. I tried to go back in April but ended up struggling. I was not ready at all. After 10 years with the company, I was demoted. I resigned. Some companies like to do ya dirty by demoting you---this way if you turn it down you won't qualify for unemployment. I was lucky, my immediate boss didn't want me to go, it was the regional VP----so my boss approved my unemployment.

The unemployment office has no case---because we can work ---right?

So I filed. Funny though--------the unemployment office will do everything to prove you are unable to work to avoid paying the benefits earned. But SS disability will to everything to prove you CAN work to avoid the benefits you earned. Which is it?

Help us someone------------

Julie

[MightyMouse]

Hi Ling, just to clarify what Julie has said:

The autonomic systems are responsible for many of the "automatic" functions of the body:

gastric systems, blood pressure and heart rate control, partial control of respiratory functions, bladder function, sexual function, body temperature regulation, etc.

You may want to download the NDRF handbook on dysautonomias from the NDRF website to give to your doctor--and maybe to read for yourself. It reviews all of the areas that the ANS controls.

http://www.ndrf.org/NDRFHandbook.htm

Nina

[justin]

i don't work, although i'm no longer bedridden. right now, i'm applying for long-term disability. that decision could take up to 8 months. in the meantime, i'm on social assistance--with a medical exemption so i'm not required to look for work.

you gotta push these jerks sometimes; if you can't work, you can't work. sometimes, i have to get very in-your-face with social workers or doctors. if they don't like it, well, too bad. they can cry me a river as far as i'm concerned.

good luck!

justin

[JacobyD]

Hi Ling.

I have been almost completely debilitated for the last three years. I had a short period where I was functioning at about 70% of my potential during the summer/fall of 2002, but outside of that I have either been bedridden (for a total of about 7 months) and/or housebound.

I am currently experiencing some improvement, but like MightyMouse mentioned I have severe problems with my throat. I get spasms and choking sensations out of the blue that raise my anxiety levels and make it tough for me to get out on my own.

I am still experiementing with new medications for my throat but am mostly on my own to research what medications might be helpful. The hard part is it can take several weeks before it can be determined if a new medication will work, have too many side effects, or won't have any positive effect at all. By the time I find something that works (SSRIs are out of the question for me) I will either die of old age or it will go away on its own!

I hope you can find a doctor that understands how serious this illness is. I recently fired my primary care physician because she thought I was being uncooperative because she told me to get in my car and go to work every day! Not to offend the good doctors out there, but this one was a real jerk !

-Dan

[futurehope]

Ling,

I had been working full-time from the age of 21. I'm now 52. At about 50 years of age, my dysautonomia became more pronounced. It became very difficult to go to work. I was exhausted, my head was constantly pounding, and I was very dizzy. I could barely do my assignments at work. I could barely make it to the ladies' room or to lunch. I hung in there for a year past when the symptoms got real bad. One day, I was so thoroughly exhausted that I could barely talk or make it to the car. I actually thought my heart would stop and that breathing took too much energy. I collapsed on the bed when I got home. (Luckily, my husband had been driving me to and from work. I thought it was too dangerous for me to drive the 28 miles.) That's when I made the ultimate life-changing decision. And that was, I was to leave work and not come back. I realized how ridiculous it was to keep pretending that I was all right when I was suffering so much. I also knew I was no good for the company. I've since applied for Social Security disability which has been turned down. I will appeal with a lawyer's help. All I know is, I used every ounce of willpower and strength to stay at my job, and then it was over. I could not go on. I hope your doctor understands. I don't think anyone but the people on this board (or the NDRF forum) really understand how disabling it is to have dysautonomia. The disability people are trying to prove I can work because I'm not in pain. I like to see some of these "doctors" feel like we do for one day and THEN tell us whether we're disabled or not! Good luck to you, Ling.

[Michelle Sawicki]

Hi Ling,

You can read my story at: http://www.dinet.org/personal_stories.htm There are other stories there that you might want to show your doctor as well.

I am a million times better than I was back then, but I still deal with dysautonomia on a daily basis. Cleaning is especially difficult for me because bending up/down/over really exacerbates my symptoms. I just do a little bit at a time and try not to stress over the fact that my house isn't perfect. I am really just incredibly grateful that I'm able to live a fairly normal life again.

Michelle

[ethansmom]

I am astounded that doctors, who are supposed to know more than patients, can be so misinformed. I never knew the extent of it until I got sick and they couldn't help me...I agree that you should read and print the NDRF handbook and show it to your doctor, it has some really good information, and you may learn some new things as well- I know I did when I read it =)

I thought what Julia was saying was interesting, in regards to the chemicals in the work environment- my POTS symptoms came on suddenly very shortly after starting a new full time job, and they have *never* been as bad as they were, sitting in that office- I only lasted two months and I also had to resign. My doctor even wondered if something there had triggered my symptoms. I guess I'll never know for sure, but it was an interesting thought.

I certainly have been bedridden before, and I am thankful for every day that I am up and around. I've felt fabulous for the past 4 days (which is a record for me) and I am appreciating every moment because I fear that I am going to crash at any time...I just hope that someday these docs and disability people will get a clue and it will be easier for us. In the meantime, we have to keep fighting. Good luck!!