I've talked over the years about my epilepsy and how it affects me financially as well as physically. Then when we add to the mix my vision issues with the RP (retinitis pigmentosa) and then The Wifester losing her job a couple of months ago (after which I never was told I was fired, but I never again received another dictation to transcribe for that doctor) and wow. I mean, just wow.
Really, life? Really?
Ever since I lost my full time job back in 2009, and because of doctor ordered work restrictions and my inability in the past two years to find an employer who will work with them, (other than the wifester's ex boss who let me do her medical transcriptions at $70 bucks a week, until she fired The Wifester, that is) I have been left to do what I can to generate my own income. Since then I have done many things to try to maintain some sort of income, but none have panned out to be very profitable. At all.
I even attended school (online) and got a degree in web development, though it took me a while to finish because my eyes always went fuzzy while working on assignments. Still, my degree is only an associate's, and everyone wants a minimum of bachelor's. Plus, in the uber competitive world of web development and design, I can't find anyone who is willing to work with me with my restrictions.
For example, my restrictions include:
- I can't be on ladders, scaffolding, or other heights.
- No driving
- No operating any heavy equipment
- No working near objects that would be a hazard to me during a seizure.
- No exposure to extreme heat (medication reactions can occur plus heat can trigger seizures)
- No work in an environment where peripheral vision is essential for safety (ie: factories with moving equipment that I won't see coming at me)
- I am doctor ordered to not read, write, or look at the computer screen for longer than 30 minute intervals with 20 minute breaks in between.
- No work that requires me to read small print.
- No work that requires me to distinguish between colors. (that's part of my vision loss, inability to differentiate between certain colors)
But apparently that big $5000 I earned last year (that's my entire income from last YEAR, folks, consider that a moment.) negates my eligibility for Medicaid, and I'm not old enough for Medicare, and I can't get insured on the private market because either they don't want to touch me or they want me to pay over a grand a month for coverage that is minimal, at best.
At some point, after I lost my job in 2009, because of my severe work restrictions due at that time only to my epilepsy (because we didn't even know about the RP) I was advised to apply for social security disability.
My application went in in April 2009, and within 90 days I was denied. I was advised to appeal, which I did, and finally last month I was given a hearing date to go before the appeals judge and plead my case. By this time, two years later, I had since discovered my eye problems and added that to my request for social security disability. My lawyer felt that my diagnosis with the RP and my severely restricted peripheral vision was enough on its own to qualify me. Epilepsy is harder to get approved because they always say you can find some kind of something to do for work when you are not in the grips of a seizure and they expect employers will make allowances for you to miss time from work due to your seizures. That's not always the case. I've been fired several times for missing work due to my seizures. They also say that seizures can be controlled and that if they aren't you must not be taking your medication properly. Never-mind that some people, like me, have what are called "intractable seizures", which do not respond well to medications. But adding to the mix my eye problems and those new work restrictions, come on! I wouldn't hire me.
At my hearing it was me, the judge, the court reporter, and an occupational therapist. After my testimony the judge asked the occupational therapist if she knew of any jobs that I could perform, and she said "no". She said that there is not an employer who will work with all of my severe restrictions. At that, the judge said she had heard enough and dismissed me saying I would receive her judgement in 30-45 days.
I got my letter from her the other day. She says that she finds that I could work in a steel factory operating a cutting machine, or I could work in a warehouse picking orders, or that I can work in a clothing factory sorting and hanging garments. I don't know about you, but I'm pretty sure that cutting machine at the steel factory is going to be a bit too dangerous for a "legally blind" epileptic, and I've been in warehouses, and I've seen the equipment order pickers have to operate, and the heights they have to climb. And, honestly, if I can't tell the difference between that yellow garment and that white garment, or between the purple one and the brown one, how am I going to sort them?? The judge said that she was not considering my vision restrictions because though my doctor ordered them, he had also recommended I go to the state's blind and visually impaired office and receive orientation and mobility training and utilize services from them. He referred me alright, but they say that since they have not received funding from the state yet for this year, they can not take in any new patients at this time. I'm on a waiting list, and have been since December. That wasn't good enough for her. She ruled that I was being "non-compliant with the doctor's orders".
*Sigh*
I can appeal, which I have, but they say it will take at least another 6 months to get a review of this judge's decision.
Meanwhile, we may lose our house. I can't afford to see my neurologist or to buy my seizure medications (which cost over $300/month). I don't WANT to be on disability. I don't WANT to be labeled disabled...I just want some help with getting doctors appointments paid for and needed prescriptions filled. I am willing to work for anyone who will hire me, but I just need some extra time to complete the job. In today's job market, the need for extra breaks and extra time to complete simple data entry tasks is an unforgivable offense.
At this point, the Wifester and I are going to Ohio in a couple of weeks so she can try to find some work through one of her friends or family members up there. We have support there. We have places we can stay while we look for a new home and let the real estate agent do his thing to sell this one. We have to sell this house before we get foreclosed on, and we have to sell it before we can even get approved for a rental somewhere else! I should feel relieved about having family in Ohio who are supportive of us and willing to help us get back to where we were before...but I just feel like a 37 year old loser. I don't know what else I am supposed to do.
Forgive my bitching and moaning, but right now, I think I'd like to crawl under a big rock and never come out.
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