Work Or Disabilty?? Really Torn.....

[brethor9]

Hey Guys!

I need and would appreciate some input on this issue. Long story short for the last 4 years I had been struggling with a miriad of slowly debilitating symptoms which made it so I finally had to take a leave from my job as a ward clerk in a cancer clinic last February....fast forward to May of this year and I was finally diagnosed with OI/POTS, moderate Dysautonomia, Hypovolemia and Beta-adrenergic hypersensitivity. I started treatment in June with Florinef and a Beta Blocker (I could not tolerate the BB) and not having great results with Florinef either.

Anyways, on some days I feel much better and think to myself; oh you could have worked today...only to be shut down again for the next several days to a week and then the same cycle again. My work contract ends in October and they really want to know when I am able to come back even on a modified basis. At this point I feel really torn because I do want to go back to work but really deep down feel it is too soon and I would end up stressing my system too much; although I feel like I am being a wimp or taking the easy way out if I apply for short term disability.

How many of you work?? and how long did it take you to return to work? or did you work all the way through your symptoms and illness?

How many of you are on short term disability? What made you decide?

I am having a really hard time with this decision....although I think I know deep down the timing isn't right yet but I would love some feedback!!

Thanks

Bren

[janiedelite]

This would be a great discussion to have with the doctor who treats you POTS/OI. If you do decide to apply for disability, you'll need that doc to be in agreement anyway and to fill out quite a bit of paperwork on your behalf attesting to your disability. Also, I've found it helpful to keep a symptom log/diary. That way you can track what type of activity you are capable of on a regular basis. If your symptoms are too variable, that is definitely something to keep into account. If you are trying to return to work, try "practicing" at home for a few weeks prior to your return. Try sitting up or standing during the period that you'd be getting ready for work, driving to, working, and then driving home; do this at home and then if your symptoms become too unmanageable, you'll have a more definite answer.

[jennyg97]

This is such a hard call - agonizing really. I feel your pain. It's tough because the less you do, the less you are able to do. But at the same time, if you push too much, then you are also able to do less.

Are there any other options like part time work or telecommuting? Maybe going into the office for a few hours a couple of days a week, with some flexibility on which days? This kind of flexibility can make a huge difference and help you maintain some sense of normalcy and positivity. For me, I get a lot of my satisfaction out of work, so when I can't do it, or can't do it well, it becomes harder to stay positive. Plus, starting with a more flexible schedule allows your body to gradually adjust to working again after a hiatus, rather than taking it from full rest mode to full work mode - an almost guaranteed relapse waiting to happen.

All that said, only you know your body and how far it can be pushed. Only you know how stable you are on a day to day, hour to hour, minute to minute basis. Only you know the flexibility you have at work. And you have to be cognizant of all those factors.

For myself, I had to go on short term disability several years ago. It was an agonizing decision, and hard on me physically, emotionally, and financially. But ultimately, it was the step I had to take to allow my body sufficient time to begin to heal from the trauma it had gone through and was going through. Once my short term disability was over (3 or 4 months, I believe), I started working part-time to gradually rebuild my strength until I could work a full schedule again. The rebuilding phase was all worked out with Human Resources before I left the office, so all sides were on the same page from the outset.

After my short break, I was able to return to full time work and eventually pick up with a full schedule of 50-60 hours a week and including international travel.

[Godsgal]

Hello...I'm 30 so being disabled is not exactly what I want to be BUT I know where my body is, I know how I feel, and I know how randomly sick I can become so quickly. Only you know what you're able to do everyday and whether work would be okay for you. Work is not okay with me right now. I just got this in December and I'm still struggling. I did apply for disability back in February because I knew something wasn't right. They denied me of course and I appealed it. Are you in a place in your condition where working at home doing anything would be an option? Maybe the job you had is not possible for you right now. Or maybe limited, or at home? Or maybe a different line of work? Brainstorm with yourself and be honest as to what you are capable of doing right now without worsening your condition.

[MomtoGiuliana]

I went on short-term disability. I was only granted it for about 4 months. I did go back to work about a year after becoming disabled by POTS, part-time. I have slowly improved. It is so hard to know how an individual situation will progress, but if you cannot work, short-term disability should be considered if it is possible. I got mine through work (I get short-term disability insurance as part of my benefits package). I don't know personally how SSDI works, but many people on DINET do.

[mwise]

My heart goes out to you as I know this is a very difficult decision to make for you. I was diagnosed with Orthostatic Hypotension Dysautonomia (Autonomic Neuropathy) in December 2010. I was off 21/2 months before I was able to return to work-full time. I am nurse of 35+years but have an administrative/desk job in hospice/homecare. I was on short-term disability which was part of my benefit package. I didn't know if I was going to get back to work and was preparing for disability. There is a lot of good information on this forum as to how to apply for disability.

You mentioned that the medications (Beta Blocker & Florinef) you were and have been taking aren't working well. Maybe you need to let your doctor know and work with him/her to find medications that may work and help get you back on your feet. I could not tolerate Florinef, but thanks to Midodrine, Mestinon, and a good diet & treatment regimen, I was able to get back on my feet-walk again and do little things around the house which lead me to return to work. I am still working-full time.

[icesktr189]

I am only 22 but am going for disability. I havent been able to work for almost two years now. I hope one day I get get off it and finish my degree, but until then my options are very limited right.now.

If you do go for long term disability, make sure to get a good lawyer and apply asap. It takes aroubd two years to get an award

[GingerA]

I understand your dilemma. I had to leave my job officially in June but the truth is I was constantly out because of the POTS before then and I was a wreak when I was there. I thought about disability myself but thought about what I can do instead. I am going to school online and trying to work online as well. In today's world there are many options that may not have been available in the past. Maybe a career change is something to consider. Think about what you can do and what interests you. You might find something that fits your new life style.

[Elegiamore]

My sympathy for the terrible situation you are in. You are thinking this through carefully and I feel you will make the right decision for your situation.

My experience: I worked on and off for 20 years with hyperadrenaline POTS and very severe ME/CFS (I am now middle aged but been sick since 19). I cannot count the leaves of absence or times I was fired for too many days out "sick." My work record was so ruined that nobody would even consider hiring me, even with wonderful letters of reference. I started a business with family members as my last option, which was successful.

In MY CASE (this is an individualized disease as we all know), the more I worked the sicker I got. Each leave I would finally feel good, go back to work and start it all over again. I only did it because I NEEDED AN INCOME and I need HEALTH INSURANCE.

Dr. Raj at Vandy told me he only has a dozen patients out of over a 1000 that are as sick as me. Can't help but wonder what would have happen if I had "retired" at 26 when the 200/100 blood pressure started. Stupid me.

As for SSDI (gov. disability) even as sick as above, including multiple heart attacks from coronary spasms caused by NE rushes now, it still took 20 months to get the FIRST yes or no. And I got a "yes." But it took 20 years of documentation and letters stating my time was very limited from the head cardiologist at Emory University.

GOOD LUCK! LISTEN TO YOUR BODY and not those around you is my best advice.

[Brye]

I applied for SSDI and was approved the 1st time around and in less than 6 months so it is possible to get a quick response. I would say don't stall though once you make a decision. I put it off longer than I should have because I had heard so many stories of rejection I assumed I would be denied at least once. You just never know.

Brye