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Posted By : mirowpl - 10/2/2017 12:56 PM
SO i have been struggling with what i thought was my gout acting up. The GI and my PCP spoke and about a month ago pcp put y on a short 5 day course of prednisone. well in about 7 days it was back. i tried to wait it out but the pain was too much. foot inflamed and couldn't get a shoe on. so called back and got another 5 days course, but this time he gave me a refill. i finished that second round on Wednesday and by sat i had to order the refill.

I messaged my GI at Mayo clinic. They just got back to me and after she consulted with the rheumatologist, they believe I am having a bad crohn's flare. (side note, when i was at Mayo, i did a consult with a rheumatologist who felt then that all my joint issues with crohn's related and not much she could do) They want the local GI to do another colonoscopy soon versus waiting until December. They are afraid the entyvio and methotrexate is not working.

I am so tired of all of this. I keep trying to stay working, remain positive, exercise some when i feel like it, eat well. But Hell, none of it is doing any good. when DO i just stop working and try the disability route? How hard is it to go this route? WOrk already accommodates me by letting me work from home, but still i just don't feel good most of the time and i do not sleep anymore and I am just flat tired all the time.

sorry to vent....

just frustrated with this SH**TY disease.....

Posted By : NiceCupOfTea - 10/2/2017 1:47 PM
Nah, it's okay. Vent as much as you like. I have different issues (uveitis), but am as fed up of this ****ing disease as you are. Also have problems with sleeping and just feeling like crap all the time.

Wish I could give some advice, but I can't even do that really :/

Posted By : gumby44 - 10/2/2017 7:47 PM
If you decide to go the disability route then get a disability lawyer to help you file. They do take a percentage of your payment, but will help you navigate the hassles. I'm assuming you are in the US, is that right? After being granted SSD, then you have a two year wait before you can get Medicare... so that really sucks.
You need to ask yourself if you really would be financially and emotionally better off not working and on disability. Working when possible often helps people with structure and a sense of purpose, but if you are really chronically too sick to work, then disability might be the way to go.
I'm so sorry for all you have been through! My guess is that with your history you would qualify, but sometimes they reject your claim the first pass and you have to repeal it before it gets accepted. It's a lot of red tape and hoops to jump through
58 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.

Posted By : mirowpl - 10/3/2017 4:58 PM
Hi Gumby...you hit the nail on the head....I would miss work and my team. so it Is hard to know what t do. I am in the usa and I work for a very large company (280,000 employees) so we have a good long term disability plan. but it sort follows the rules of the SSD and such. They do make you file for ssd once you have been out for 2 full years you also agree to be retrained and such for a job you might be able to work some...the idea is to reduce their payout but what you make working. if you don't get approved you can technicaly still be on the work ong term disability plan but odds are they will have you seeing their doctors and such to make sure you are really unable to work. in fact, the disability company will help me file the ssd claim when it is time.

anyway, I decided to hang on for now and see what is going on with the current flare. I am just so tired its hard to know exactly what is wrong and how to get better.

thanks to all for listening

Posted By : gumby44 - 10/3/2017 8:42 PM
It sounds like you work for a good company and if they have the ability to re-train you or allow you to work part time and still get disability coverage then maybe you should go for it.
58 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.

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