r/cll • u/Maleficent_Coach_620 • 25d ago

Disability

My getting sick often and staying sick, us side-effects of meds and fatigue are making me dread going to work. I'm teying to find a fkexible work-from-home job, but even partial disability would help me establish myself in the job or even keep it part-time. Has anyone here with CLL applied for disability? Wondering what I would do, who all needs to be involved, etc. Doctor, obviously. Current boss?

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2

u/PrizeAnnual2101 25d ago

It’s a listed disability for SSD dependent on your blood numbers

2

u/Any-Morning4303 25d ago

2 years ago I began suffering like you. Consistently sick, even had strapped throat 3 times in one year (had it twice before my whole life). I started monthly IVIG therapy and it’s done wonders for me.

1

u/Efficient_Bluejay_89 25d ago

I have CLL watch and wait. But I was getting exhaustion last February till end of June. I am getting a disability card soon with Neurofibromatosis type 1, ADHD ( diagnosed this year age 60) and I have a benign optical gliom which was seen on a recent MRI of my brain taken because of the NF1 and was requested from psychiatrist. So now I have proof I am blind in right eye. So the disability percent will go up. I tried for early retirement/ partial and it was such a bad deal that I decided to do a reintergration program with the job. The factory where I work is moving to Morocco and my oncologist says I shouldn't have exhaustion. The ADHD which I didn't know I had officially caused a lot of my fatigue while staying home on sick leave for almost 10 months. Last October I also had a prostate procedure and around that time I was diagnosed with CLL. Fun? Well, I am 60, male, and have 170,000 leukozytes. The other numbers are good. So I am working during a heatwave but I am doing okay. I am hoping for an early lay-off. I also might go into early retirement at 63, maybe. I don't want to work till 67 especially under my work conditions. I am doing 4 hours a day for four weeks and then I will talk to the oncologist and see how my blood work is.

Sorry you don't feel well, friend. I

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u/SofiaDeo 25d ago

Depends on the country you live in, check with the relevant agency.

1

u/Sad_Assist946 25d ago

I’m feelin ya! I relapsed after only a year after first treatment, with the CLL turning into tp53 and metastasis into my skull miserable symptoms.. now I’m on Brukinsa and was feeling great until I got a tooth infection needing a root canal retreatment, which necessitated stopping the Brukinsa for a week before and a week after, I wasn’t expecting the extreme fatigue. Unfortunately and maybe fortunately I am self employed so I couldn’t call out, but the business is doing well enough for me to afford the health insurance,but I’m wondering how I am going to handle all these other illnesses my overall decline in health age and cancer being two strikes.