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Trying to get by day by day

Diagnosed about a year ago. Hospitalized in the Spring. Remicade every 5 weeks. B12 shot each week. I never know day to day how I will feel. I hardly go out anymore because I end up sick. But denied disability because my job is not physical. Am on unpaid leave of absence so I'm very stressed over finances.
 

nogutsnoglory

Moderator
Welcome to the forum. Can you appeal the disability denial? I see you joined the disability/unemployment group and that's a good place to find out what others have done or suggest.

I'd also recommend calling the Jennifer Jaff center as they offer free advice and help for those with chronic disability http://www.thejenniferjaffcenter.org
 
Thanks for the link. I have an appointment with a labor lawyer next week to see whether to appeal the LTD denial. Can't apply for SSDI until end of January. My STD ended mid-Nov.
 
Welcome to the forum. How long have you been taking Remicade? Did the Remicade give you some relief when you first started the infusions but have now stopped their effectiveness? You may have built up antibodies. It may be time to consider an alternate treatment.
 
Started Remicade in January. Had a major flare the weekend after my third infusion and ended up in the hospital. After that they doubled the dose. I see my GI after the holidays. He mentioned that I might be building up antibodies when I saw him last month. I am just getting over a peritonsular abscess. I meet with a labor lawyer on Tuesday to see whether he thinks I have a case in appeal.
 
Started Remicade in January. Had a major flare the weekend after my third infusion and ended up in the hospital. After that they doubled the dose. I see my GI after the holidays. He mentioned that I might be building up antibodies when I saw him last month. I am just getting over a peritonsular abscess. I meet with a labor lawyer on Tuesday to see whether he thinks I have a case in appeal.
Hmmm... I know it is very difficult to get approved for disability. A friend if mine works in the SSA appeals court which considers reconsidering cases which were initially denied and she sees lots of Crohns cases and even cases where the person has suffered a dozen or more years are most often denied.

Is there any chance your employer would consider allowing you to work from home a few days a week?

What about natural supplements? Are you taking any probiotics or vitamin supplements?
 
I take a multivitamin, vitamin C, weekly B12, and periodic course of vitamin D. I'm allergic to NSAIDS, so not much help with the arthralgia. I have telecommuted for 4 years, but company is ending that the first of the year. The new HQs is about 130 miles away now. For me that would be a 3 1/2 hr commute each way. Some days my hands hurt so bad I can't button my clothes. The B12 helps with the fatigue and memory but I start running down about 5 days in. I do federal proposals and after my hospital stay, they are afraid to give me work because I may get sick. Proposal work is high stress and long hours. Right now I'm focused on appealing the LTD through the insurance company. I can't apply for SSDI until the beginning of Feb.
 
I take a multivitamin, vitamin C, weekly B12, and periodic course of vitamin D. I'm allergic to NSAIDS, so not much help with the arthralgia. I have telecommuted for 4 years, but company is ending that the first of the year. The new HQs is about 130 miles away now. For me that would be a 3 1/2 hr commute each way. Some days my hands hurt so bad I can't button my clothes. The B12 helps with the fatigue and memory but I start running down about 5 days in. I do federal proposals and after my hospital stay, they are afraid to give me work because I may get sick. Proposal work is high stress and long hours. Right now I'm focused on appealing the LTD through the insurance company. I can't apply for SSDI until the beginning of Feb.
I see. I know a thing or two about the federal system so I understand your dilemma. So disappointing they are discontinuing their telecommuting policy next month. Would they consider making an exception for you since you have a documented chronic illness and s 3 1/2 commute one way? Telecommuting was not permitted in my organization until just a few years ago, however, prior to offering it, they allowed one of my coworkers with IBS to telecommute four days a week. Don't let them take that away from you without a fight!

Glad to see you are taking Vitamin D, but is it Vitamin D2 prescribed by your GI that you take once a week or is it Vitamin D3 which you take every day? How much are you taking? You are obviously having some severe inflammation issues and Vitamin D (which is actually a hormone, not a vitamin) regulates the amount of inflammation in your body. If you increase your Vitamin D intakes, specifically Vitamin D3, you may enjoy some relief from the inflammation you are experiencing.
 
That's why I'm going to talk to a labor lawyer. I can't return to work if I appeal. Even if I could they would need to accommodate my medical needs. Crohn's is covered under the ADA, so they should have to demonstrate that the accommodations will be detrimental to the company. Since I've been doing the job from home for years, I don't know how they claim that. I guess we will see. In the meantime I'll just stress over finances. I'm not sure which vitamin D it is. It is prescribed by the rheumatologist. It's 50000 mg weekly. Usually for 8 weeks.
 
That's why I'm going to talk to a labor lawyer. I can't return to work if I appeal. Even if I could they would need to accommodate my medical needs. Crohn's is covered under the ADA, so they should have to demonstrate that the accommodations will be detrimental to the company. Since I've been doing the job from home for years, I don't know how they claim that. I guess we will see. In the meantime I'll just stress over finances. I'm not sure which vitamin D it is. It is prescribed by the rheumatologist. It's 50000 mg weekly. Usually for 8 weeks.
Only D2 needs to be prescribed by a doctor, therefore, you are most certainly taking D2. Taking D3 is much more important than D2. D3 is more effective than D2 in combating inflammation. Have you had your Vitamin D3 level tested? What was the result?
 
SERIOUSLY, this might be a real help
I have story I am trying to help spread and I think it could really help you and anyone else with the diesease out. Three years ago I was diagnosed with the disease and within the last year I have been practically cured of any symptoms. I am trying to share this story about how I reduced the inflammation caused by my Crohn's disease naturally and actually lowered my medicine intake (bare minimum to none) within the last 6-7 months. I really want to see if I can be of any help to to anyone else with the disease. Feel free to message me on Facebook to hear the whole story @jocelyn Senecal or reply

My friend showed me a natural drink that reduced my medicine intake to the point where all I have to do Is use this instead of pills. My friend told me about mangosteen and how they have many drink supplements with it. It's a fruit that is proven to help inflammation. It seriously helped me and I do not think many people know about it.

Jocelyn
 
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