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May 9, 2019 03:13PM
I am my own employer and I am on disability. I got my diagnosis 3 months after signing a lease on my first retail spot. I have a small art school that I was running by myself with an assistant.
I am unmarried and I don't have children. My path would have been different for sure if I was/did. I feel awful for women who are working so hard just to keep their insurance for their kids. It makes me so sad because I can't imagine having to be a consistent 40-hours-a-week worker. If I am up and on my feet form more than 4 hours I'm tired -- if I push it six I'm in pain -- any more than that then I can't get out of bed the next day. This is just fatigue & pain-- what about all the gastrointestinal problems and the cognitive problems?
I used to be able to teach all day long -- on my feet. Well that plan fell apart! Right after my diagnosis I went to an MBC support group and the women there told me to apply for disability NOW because if I wait it will be harder. I guess if you wait, it is harder to get unless it is linked to a big change -- like starting a new treatment. So I applied and got it. Because I have a business they were harder on me and I'm still provisional in a sense -- they will be checking in next year. They said 'How can you be disabled if you have a business?' And I broke into tears -- I told them I had a lease I couldn't break. Tears and bad language somehow did the trick and they wanted me off the phone so they sent me paperwork.
The last 2 years have been crazy but I have kept my business open. I suddenly had to hire people to do my job -- I wasn't ready for that and I was too sick to train them. It was bumpy, but I just kept doing what I could and 2 years after diagnosis I am still doing it. I got into debt to pay my employees but we're finally seeing the light. I lived off of the charity of family and friends until I got disability. Now I have the stability of $1400 a month coming in. I think I'm allowed to make $1100 on top of that through work.
All I care about is that the business can support itself because it brings me joy and keeps my mind active. We are starting to be profitable which scares me. I fear the gov't will say, 'you're obviously fine' -- but they won't understand that I can suddenly be very, very 'un-fine' at anytime. If they say I have to give up the business to keep my disability income, I will -- because I can't pull it off without that stability of guaranteed income.
If my business starts being more stress than joy I will also give it up. I don't want anything stealing time or health from me.
p.s. About insurance-- Before my disability came in I was poor enough for free health care. Because of a cost of living increase my second year of getting disability income, I was $20 over the limit for my health care (there was still no profit from the business). Regular insurance co-pays would have killed me. I found out about BCCTP - the Breast and Cervical Cancer Treatment Program -- it gives you 100% free Medi-Cal without the income limits for as long as you are in treatment. It was difficult to figure out - I was on the phone with so many social workers who knew what i was talking about but could not agree on how to get me enrolled. Eventually I found free legal aid and they figured it out in a day. It was the greatest day ever -- I could get my Ibrance refilled!
When I've been on disability for 2 years (I think), I will be manditorialy switched to Medi-Care.
p.p.s. I live in California and things may different state to state.
6/30/2017, IDC, Left, 6cm+, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2-
8/4/2017 Femara (letrozole), Zoladex (goserelin)
3/9/2018 Ibrance (palbociclib)