I got the decision from my disability hearing and they decided that I am perfectly capable of bagging groceries still. I wanted to write about this yesterday, but I was so furious that I would only have spewed out obscenities and would have been incapable of having any kind of reasonable response. Now don't get my wrong, I am still angry but I want to share this enlightening experience so others may benefit from it. My family was concerned that I would try to off myself, but there is no way I am going to let Social Security win. I do not feel that I am out of line asking for disability and if they think I am just going to give up the fight, they have gambled with the wrong gimpy crackpot! It only brings out the stubborn mule in me and makes me that much more determined. I have now girded my loins (a bygone phrase, but one that is too good to let die out) for a long bitter battle. Okay, enough of my battle cry, here are the highlights of the judge's decision:
My MS is mild and under control. Where have I been? I am so glad this judge told me this! I thought 5-6 attacks in the first year and having to do the steroids 4 times in 10 months might have been the opposite of mild. And what do my neurologists know? Even though my first neurologist is a highly respected doctor and one who SS has sent patients to for evaluation, they still know better than him. He wanted me to avoid any kind of stress due to the aggressiveness of my MS and said that he felt if we didn't get my MS under control I would probably enter the secondary progressive stage within 2-3 years. Also that fact that I never recover completely from my attacks worried him. Even on Tysabri I'm still having a, albeit more slowly, decline. It was also not considered that Tysabri is a last resort for treatment; that you have to fail or be unable to tolerate any other treatment to get Tysabri. But what are facts to the SSA?
A psychiatric nurse's records and opinions are not good enough. Even though my psych nurse was recommend to me by 2 different doctors, her records and diagnoses were inadmissible because she is not a doctor, so all that was thrown out. She can write prescriptions and is highly respected but her opinion is not good enough for the SSA, which leads me into the next one.
My depression was not considered because it did not fall into their strict criteria. Okay, I am going to be 100% honest here. I have had 2 major "depressive episodes" (they are not called "nervous breakdowns" anymore) but they were not considered because they have to last at least 2 weeks and of be of such severity that I am unable to function in even the most basic way, ie bathing, eating (which I didn't do for a week during my first nervous breakdown) etcetera. One must lose touch with reality and descend into the depths of believing their cucumbers look better in spandex than they do for the episode to be recognized. Even though I cut my wrists and had to spend 5 days in a psych hospital, it was not considered bad enough because I wasn't suicidal for at least 2 weeks. And because my psych nurse practitioner is not a doctor, all her records of my depression were thrown out and they only recognized that I cut my wrists once (heck, that is such a minor thing!) and that I take psych meds that they deemed to be working miracles for me. Good thing they let me know that! I thought fighting with depression and anxiety daily was pretty major, but I am just one little crackpot who doesn't know her own problems as well as the SSA.
I do not have a record of my functional capacity. Herein lies my biggest mistake. I never had anyone do that functional capacity test (is that what it is called? For some reason I can't remember right now.) where they test how long you can sit, stand, walk, kneel, crawl, how many times you can lift something, how much weight you can repetitively lift, how much repetitive motions you can do, and so on. I never wanted to do it because I knew it would wipe me out for the rest of the day and I hate that feeling. That is where I messed up. I now have on my very short list of things to do that stupid evaluation, that and finding a psych doctor to confirm what I already know about my mental instability.
Even though my future prospects are not good and at most I could only work a 6 hour day, per SSA, I can still bag groceries. In the report the judge concedes that my future prognosis is dim and my continued deterioration is highly probably, but I am still able to work 6 hour work days with accommodations and periods of rest. Wow. Where do I start with that one?! First, what employer would touch me? I am a limping liability. And would a grocery store would be willing to accommodate a 34 year old bagger that needs more rest breaks than her 16 year old co-workers? For some reason I don't think the offers would pour in. Second, how would I ever support myself doing that? Tysabri alone is over $50,000 a year (when the infusion center charges are added in) and then add my 9 other meds into the mix and I just don't see me making it.
I think one of my biggest mistakes was trying to downplay my MS and assuming that they would understand that when I said I have overwhelming fatigue, limited sensation on my right side, have lost visual acuity in both eyes, have optic neuritis in my left eye, pain in limbs, face (TN), and around my left eye that they didn't need me to spell out what that all added up to. The judge even says that I am a believable person and came across as credible, yet all my symptoms from my MS are not documented in the way that he would recognize them. Again, my BIGGEST mistake of not going through the ordeal of testing my abilities bit me in the behind. I would love to bag his groceries and replace his Preparation H with battery acid, his bottled water with douche bottles of Low Tide scent, his pimple cream with Vagisil... are you sensing a theme here? But I'm not bitter at all.
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