JOB?!?! Invest in Adaptation or Hope?

[Grace]

I am beginning to think it is worth it to break the bank for adaptations rather than medical procedures. The more I read, the more it seems to me that only the lucky few recover from this mysterious illness--and most only partially and over many years.

If I don't get a miracle, I will lose my job SOON. I ain't got time for many years! If I lose my job, it's an automatic bank breakers: 2/3 of the family income--gone, health insurance--gone... UGH!

Has anyone successfully held onto a job through this? Mind you, I can't sit for more than 2-3 minutes without getting fruity. Standing--why, I'm doing it now and ten minutes in, I am on the verge of shouting abuses! I'm tempted to make demands on my employers citing ADA... At least it would give me some time to stall. But I think it's a bit unfair given that I don't think the adaptations are realistic teaching college. What are they going to do? Put a zero gravity workstation in my office and one into the classroom? Maybe online teaching is in my future--as much as I have despised the idea of it...

LORD, HAVE MERCY!

Anyhow... I will lay down and ice and ice and ice.

Appreciate any thoughts.

BEHOLD my dream desk/chair all-in-one (provided rotating icepacks...)
And another alternative so that I can actually work lying down. Lying down seems to be what I'm best at these days.
I've got a crush on Ergoquest...

[janetm2]

Grace,
I have held my job but I see on difference is that I had surgery before I got that bad, basically I could still sit. The worst prior to surgery was down to 4 five-hour days a week taking weds off for a break. Warm baths 2-3 times a day and I had vacation time to cover it and an office that worked around me. Post surgery off 3 months then I am still 2years out working 4-6 hours between appointments and just either not up to more time or scared to have any reoccurence. I am taking Leave Without Pay via the Family Leave Medical Act to cover time away and again another office that is working around me. I am a software project Manager ( I lead software developers through the phases to create applications and work with customers for requirements, problems, etc). You may want to look into the online teaching. As for disability help the "reasonable"accommodations I did not believe would cove the bed and workstation as I work for the federal Government. I did get insurance to pay 80% for a wheelchair and custom Roho cushion. Since I had an old wheelchair I bought another cushion and brought those to work and be able to sit in comfort - post surgery. You do need to find what may work for you. I was lucky to get diagnosed and into surgery in my first year of continual although not as high pain as you. I was running out of vacation time so immediately went to surgery. I hope you can find a path forward.
Janet

[Grace]

A wheelchair! Why didn't that occur to me? I guess I put all seating options out of my mind. But maybe I will be better enough for a little bit of sitting... Maybe... A stash of icepacks... Alternating between standing and lying down... and use a chair to get around campus... And that cushion looks amazing!

I'm thinking... .

Everything happened super fast for me. I am always in a hurry, so I shouldn't be surprised by that!

Thanks for the feedback!!

[Violet M]

Hi Grace,

I think working with acute PN pain would be extremely difficult. I wasn't working when PN hit and I'm doubtful that I could have continued if I had been but there are some people who do. I think they amazing to be able to do that. Are you taking any medication to help you fight through it?

Violet