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karina77 (@karina77)

Working with a Chronic Illness

Just Want to Talk | Last Active: Apr 9, 2019 | Replies (13)

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@tiymay

I recommend talking with your provider about appropriate accommodations for you, and requesting them at work. It sounds like your current job may not be the best fit though- while they can’t legally discrimate, they can be unpleasant and unsupportive.

If this job doesn’t work out, you could contact your local Vocational Rehabilitation office- they provide free assistance in job hunting to individuals with disabilities.

If working does not work out at all, SSI could be an option. When you’re under 18, your parents income is counted against you (it’s a financial-need program, so they determine how much you need based on income). Once your turn 18, your parents income won’t be counted.

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Replies to "I recommend talking with your provider about appropriate accommodations for you, and requesting them at work...."

Karena, I understand a really feel for you. I have followed This Mayo Thread or whatever it is called now for several months now looking for help myself. Last July I came down with what I still feel I Lyme Disease. But after chasing it around with incompetint doctors in my state, New Mexico, rated last in the country, no one would give me an exact diagnoses.
So I have reseached it and many thinigs that fall close to it. Chronic Fatugue, West Nile Virus, Fybromyalgia, Lupus and many others. Lady Gaga is the Leader in the Fybromyalgia right now. They all have very similiar triats.
One of the most comon I have found is REST, REST& MORE REST!. I know that my doctors and I are masking many of my problems or hurts and soreness with certain medications that allow me to conduct a somewhat normal everyday live. But other than me skipping a med at a certain time that will put me down as you describe is the not getting rest. I am 72 and have been an active hiker, fisherman, skier, played golf for 65 year and many other things. I tried playing 9 holes of golf the other day. I was down for a week. Maybe I got off track a bit. What I am trying to say is you can't live life as you normally have. You have to cut back at least for now and watch what you do. Plan your live around your work and social schedule. That may sound harsh but that is the only way to address what you have. I am self employed and run my own business. I have to plan the days so I know when to rest the day before and hope I wake up feeling ok. There are days when I don't but I go ahead and see my customer, which can take 2 -6 hours. When I come home I usually go stright to bed. Last Thursday I had to travel 600 miles round trip the same day. I slept just under 30 hours this weekend and just got up from a two hour nap on Monday.
Sorry for sounding like a lecture but you have to go through it. It dosen't seem to want to go away from us! By the way where did you here about Othorstatic Intolorance because that happens to me quite fequently.
Thanks,
Sundance

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