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Hi folks,
I was hoping to never have to do this again, but life works in funny ways sometimes and I have to ask for help from my friends and the general public again. When we last ‘spoke’ I was unable to return to work at Discover because neither my neurologist or psychiatrist would sign the release papers to return to work, justifiably. Actually, lets give you some back story first…
So I’m a 49 year old Cuban American. I was born in NYC, but moved to Phoenix AZ in 2006. Over my life I’ve had 13 different Traumatic Brain Injuries (TBI) which have left me with brain damage. The most recent TBI was in Phoenix in 2008, after which I had a personality shift, and started having anger management issues. As we investigated that the brain damage was discovered and I was diagnosed with PTSD from previous traumas as well as a condition called Psychogenic NonEpileptic Seizures (PNES).
At that time I was told that I would never be able to work again, but I rebelled and sought out therapists and doctors that would help me struggle towards that goal of rejoining the workforce. After about a year and a half of struggling I was able to work full time in a call center. I still had my seizures, but with medication was able to keep the frequency down enough that I could use protection from the Family Medical Leave Act (FMLA) to protect my job from my frequent absences.
Fast forward to early 2020 where my seizures spiked. I was having 3-4 a week and I ran out of FMLA by July. I left work on an unpaid short term leave of absence and used Fundrazr to help me live until I could see new specialists on find out why the seizures had spiked, because my regular psychiatrist and neurologist couldn’t figure it out or get them under control. That brings us back to last January, where I was let go from Discover because I couldn’t be released back to work yet, because the new doctors didn’t have answers yet.
Since then I’ve seen countless specialists and stumped them all. One neurologist did find that I have a migraine disorder, and that’s getting treated now, but that treatment hasn’t had an effect on my frequency of seizures, which is currently 3-4 a week. I have been in treatment for my PTSD, using EMDR therapy, since April but that therapist isn’t on our insurance and that’s $150 per session. The latest ‘diagnosis’ is that I most likely have Chronic Traumatic Encephalopathy (CTE), which is an untreatable condition.
Another challenge I’m facing is that my spouse, while still working, changed jobs during the pandemic and isn’t earning as much as he used to, which is effecting our ability to pay bills without my bringing in any income. He doesn’t have insurance so we had to purchase that through the AMA marketplace, which is very expensive.
When I last asked for help I estimated that needed about $6000 for 5 months worth of living and medical expenses. Unfortunately with all the out of pocket specialists, his lower income and the pretty … limited… insurance we have now I need to ask for about that much for just two months. So far this year I’ve been surviving on cashed out investments and leaning on my family for help when that ran out, but my family is now stretched to thin to continue to help.
The person working my case at the disability office has been great about returning me calls and has kept me abreast of things, and I’ve gotten him records when he’s had difficulty getting them himself. He said when we last spoke on Thursday that we’re in the homestretch and it should be just another month or 2 before disability is decided on, so that’s what I’m basing the timeline on.
So that’s what’s going on. I truly hope that you can help me survive these last two months.
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