How to keep your job with dysautonomia?

[purplefocus]

I had my first issue of termination due to my excess absents due to dysautonomia. Although my supervisor is aware of my disease she has to go by the policy. I brought in documented evidence from my doctor but she has to present it to her boss before and if they decide to terminate me. It is very frustrating because I have my medical insurance thru this company. I know I can quickly get another job but I would have to wait 3 months before new insurance would go into effect, and unless my symptoms stay more under control I would probably have the same problems with absentees. How have any of you all dealt with this?

[Ling]

I work full time and there is not a day that I don’t feel terrible. I tell you I don’t know how I get out that bed in the mornings. I am fighting against Pots; I am the boss and not my body. Look I understand this is not always possible, but fight. I had an attack this week and felt terrible the next morning. I normal pray and thank God that I don’t have Cancer, I can walk, breath and I am not dying from Aids. It is the only way I try to find positive ness in this hellhole. I just keep going and going and going. No matter how bad I feel, I need the money and believe if I sit then I will truly get sick.

I have the most amazing boss. He is a perfect gentleman and a wonderful Christian. I have a wonderful open and honest relationship with him. I tell he straight what is going on in my life and he was one of the people who encouraged me to get a second opinion. When a stupid Cardiologist was trying to kill me with very high dosages of medication. I was more than a month at home last year and my fellow employees were very supportive and understanding. Some of them have helped carry me to the car and seen me have an attack. I truly have so much to thank God for that I will not put all my emphasis on POTS. Pots *****!

Don’t give up and keep your focus on God, he gives me my strength to get through life. Because as everyone knows, life is not easy, I have been giving 3 Diseases so what else can I truly do?

[futurehope]

Purplefocus, In case you ever try to go the disability route, a lawyer told me that it looks better to the Social Security disability people if you show that you've TRIED to maintain a job no matter what. You will have all the documentation you need in your case since you have been trying to work and can't. That's the up-side of what is happening to you. The downside is that you may not have been in the workforce long enough to even consider SSDI. I don't know your circumstances.

[futurehope]

Bless your heart, Ling. I, too, prayed fervently every day and whenever needed to keep my job. I also felt like I was in a ****-hole. The last day on my job, I, too, felt that I was so exhausted that I couldn't talk and that my heart would stop beating. I sonehow made it to the car. I don't know how. We certainly learn the grace of God in situations like this. God bless you! You're my hero for hanging in there. I pray that you have a bright and carefree day. Nancy

[purplefocus]

Thank you for all the encouragement. I am a nurse and have been for 16 years. My days at work are very hectic and I am on my feet constantly at times. I love my job and don't want to have to stop working. I have worked when I thought there was no way I was gonna be able to walk down the hall again. Not to long ago I was at work and I became the patient, ( I passed out in a patients room). I get alot of support at work and home. If I could just find a miracle for energy I think I could deal with all the dizzyness and brain fog. Once again thanks for all the encoragement.

[ethansmom]

I just wanted to say that I commend everyone who works full time outside the home with this illness. I was given the option to quit or be fired only ONE month after I got sick- they didn't even give me a chance to recover. I haven't worked full time since then (2 years ago), but then again I am raising a one year old, so working full time is an understatement

I am currently working from home and going to school part time- I don't think at this point that I have the energy to work full time, and thus have not had the desire to put myself in that position. I'm always afraid of failure- because I remember how hard it was to drag myself into that office, day after day, and be so miserable I couldn't do my job. I think my quality of life is better at home- I have the freedom to rest or lie down when needed, and to go out and do things I enjoy. If I was working that is ALL I would be able to do. Anyhow, good luck with your situation, I hope that things work out for you- let us know. BTW, I don't have health insurance right now either, it's just one of the many sacrifices I've had to make for the POTS.

[Timbo]

I find it ridiculous that after all you have done for a company, they do nothing for you. You were there when they needed you, but as soon as you get sick they abandon you. I understand the principles of running a business and that they need someone to do the job, but a temp could be hired until you are able to return. It is outrageous that there are no laws to protect an employee who becomes chronically ill.

[MomtoGiuliana]

I second Timbo's post. I didn't know it is legal to fire someone for having a chronic illness--is it? I guess I was lucky. I work for local govt. When I got sick, while pregnant, with POTS, I was gone for ten months. I had disability insurance through my job that kicked in and eventually gave me some coverage. The County continued to cover 90% of my family's health insurance premium during those ten months as well. My boss created a part-time job for me (we had started this process when I became pregnant b/c my plan was to come back part-time after the baby was born). He held the position open until I returned. I do realize how fortunate I am. Luckily, too, my position is fairly sedentary, although it involves a lot of meetings and some regional travel, but, I am not on my feet most of the time. I think the reality for many POTS patients is that you have to make lifestyle changes, and this includes the sort of job you do. Many POTS patients who have physically demanding, long-hour positions probably have to re-train for something else, or otherwise move into another line of work--if work is possible at all. Pushing yourself to the limits of your endurance, while often we have no choice, is probably not healthy in the long-run.

My deepest empathy is with all of you who face the economic and psychological trauma of making this transition, especially if it is from something you really love to do.

Katherine

[purplefocus]

New update on my job situation. The corporate office decided to not terminate me. I am sure they see the legal part of it. But they don't know what to do with me. They told my boss I was a "risk managemnent issue". I am suppose to find out monday what is happening, in the meantime I am missing quite a bit of work when actually the past 2 days I felt like I could have worked.

[MightyMouse]

Purplefocus, I sure feel for you. I've been able to work f/t for most of my career, but i have gone through several more times where my symptoms have become accute and I've been unable to work. I've taken 3 leave-of-absences; one for 3 months, one for a month, and one for almost a year.

I haven't told my current employer of my medical problems yet. I was just telling Michelle that I've been having a really tough time coping with my workload the past few weeks. I've been having intense nausea and GI pain for more than a month, and it's really been getting tough to get myself into the office and stay the whole day. I worry about the termination issue or at least being called into see my boss for the call-outs I've had.

Hang in there as best you can. If you haven't gotten a good doctor to help you yet, I hope you find one. I don't know what I'd do without my docs, who patch me up and keep me as healthy as I can be.

Nina

[denabob]

purplefocus, I truly understand your situation I was removed from my position as a letter carrier for the USPS do to "inability to perform my job duties" this is a devestating thing to face when you truly enjoy your job. I was at least fortunate enough to have a medical retirement plan and have since been approved for SSDI.I'm 30 and hoping to get well enough to eventually work again but for now I thank God that I can support my family and that I dont have something even worse! Hang in there and pray alot and it will work out for the best.

[briarrose]

My situation at work was already precarious because I filed a sexual harassment complaint against a male nurse who couldn't keep his hands to himself. Ever since then my employer has wanted to get rid of me, I'm considered a trouble maker for not keeping my mouth shut. So imagine my fear when I got sick.

I immediately seeked counsel with an attorney that specializes in these matters. They told me that as long as I had my ducks in a row, I was pretty safe and I legally can NOT be disposed of.

So I went back to my doctor and had him fill out the family medical leave paper work from the hospital I work for. He stated that I had a chronic illness and would have intermittent leaves, for the rest of my life.

The attorney said that I can miss up to 6 months a year without them putting a hand on me.

There are laws against people with chronic illness being fired. Just do some investigating, if you get fired; get a lawyer and sue their **** off!

Here's the website for the family medical leave act: http://www.dol.gov/esa/whd/fmla/