Thanks Melissa, Gloria, Bob, you really helped me feel less alone- when I logged on I thought no one would answer. Bob, you are eternally my favorite buddy - you are amazing, considering all that you endure. You know you’ve always got me.
Matt,
I just started crying when I read your post. I understand so well the longing to have things return to normal. To be able to work that stressful career that I used to complain about - now the loss of it is huge. I had made my way up in a guy’s world, and was so proud of where I had gotten. I was a construction project manager, and as the condition progressed and I became more and more medicated, my work started failing. When worse came to worse and I found out I would need the MVD, I worked till 2 days before it, and was certain that I would be back to normal in 6 weeks. I would be one of the lucky ones, and it would fix me. Many complications later and another 1-1/2 brain surgeries, and I am still broken. OK, so be it - I can deal - I always do.
anyway, yeah, the loss of the career was SO HARD to get my head around. I figured out just how type A I was when I got sick - the idea of stopping, of not pushing through pain, or resting and doing nothing are so %$%&ing foreign to me. But I am learning.
I’ve got a binder of records as well, and I am dumbfounded that they have turned me down. My next door neighbor has SSDI. he has cancer. It is in complete remisssion and he is out doing everything he wants. ,enjoying the lovely days. I am fighting tooth and nail for it, and am stuck in my house trying to deal with incessant pain, losing day after day of my life. I mean, I would never want cancer, and it is horrible, and I so feel bad that that is his course. But he gets to thrive a bit in between, lucky him. It doesn’t seem fair all the same. WE paid for SSDI by working all of our lives - you’re right! Damn them for denying us.
OK… geeze, I HATE looking at the denial letters, they incense me so much to read them - I will abrieviate to shorten: first denial: U said that U are unable to work because of TN, and Trigeminal Neuropathic pain. The medical evidence shows that u have TN and assoc nerve pain. While this condition does limit your function, it does not prevent all work activity. You are able to freq lift 10 lbs; Stand and walk bout 2 hrs in a normal 8 hr work day, and sit for about 6 hrs in a mormal work day. U should never climb ( ladders ropes) but may climb (ramps), balance, stoop, kneel, crouch and crawl frequently. U should avoid moderate exposure to extrm heat, cold, fumes and avoid expos to hazards (machinery, heights) We also evaluated your mental health. Tho u may be anxious or depressed at times, your records show that you are able to think, communicate, and act in your own interest. (then some more about being able to act like a human), and then we realize that you can’t do your past work, but your condition does not preclude you from all work activities… further down it says…U must meet certain rules for SSDI, you’re required to have the required work credits and your health problem must keep you from doing any kind of substantial work, nd last, or be expected to last, for at least 12 months in a row, or result in death
The appeal denial says We have determined that your medical condition is not severe enuf to keep you from working. We considered the med and other info, your age, educ, training and work exper in determining how your condition affects your ability to work. You said that you are unable to work becuase of TN, Hydrocephalus, Vision. We reviewed your claim to see if our decision that you are not disabled was correct. In addition to the evidence already contained in your file, addt’l reports were considerd. After reviewing all of the information carefully, we again find that your condition does not preclude you from performing all work activities. All though you may not be able to perform your past work, based on yr age, education, blah blah blah. Again, the statements …You must meet certain rules for SSDI, you are required to have the required work credits and your health problem must: keep you from doing any kind of substantial work, and last, or be expected to last, for at least 12 months in a row, or result in death
So again, apparently, if I swallow enough magic pixie dust (which I am still waiting to receive from them), I should be fine. No problem. I used to get migrianes pretty regularly. I mean diagnosed, vasodilating, real migraines. Not headaches. And I would work through those until I dropped. Those shifts I only stayed 8 hours. The rest were 10, 12 hours long. I was TOUGH. But jeeze, how can they say these things - how can they hide behind an official letter. I want them to come and say it to my face. On a bad day. Which would be most of them, really. WE DO NOT GET BRAIN SURGERY TO TREAT “HEADACHES”. Oh my god - every doctor I meet reacts like one should…they feel genuinely bad for you. Becuase they have learned about TN. On the flip side, I made a comment to an aunt in law, saying that TN is worse than migraines - she said “REALLY?”. No. I get brain surgery for the fun of it. OH, and one day, she and my mother in law saw me trying to deal quietly with a bad pain day (i didn’t say it was, I was just sitting quietly in an armchair, waiting for them to leave), and they thought that I was on the nod from too many drugs.
Sorry, Matt, you opened that door. And now all my frustration is coming out. And I am hurting today, and that doesn’t help. In fact, it is really past time to go lie down. I hope that you never have to read those words from SSDI, it really hurts to get those letters. I hear that they always turn you down if you are in your 40s or younger. But that is just heresay, I hope. And as a woman, there is always the assumption that we are being frail. Or overreacting. Ughh.
I am going to go lie down. Thanks Matt, Bob, Gloria, Melissa - I need to get that stuff off my chest every once and a while. I am a good natured person, but this is just too much.
Love and peace to all here,
Lily