So I am just trying to do a progress update to bring everyone up to speed on what is going on in my life. I've been doing a lot of reading on visual symptoms to try to determine what it is that I am experiencing. I came across something that defined exactly what I am experiencing in the simplest way ever. "When I am walking I cannot read signs around me but when I stop and stand still everything comes into focus", they gave more details but this along with everything else was exactly what I'm experiencing. So I dug deeper and deeper and started reading about “vestibulo-ocular” symptoms and though I cannot say I fully understand how any of this works just yet I can say that this is what I am experiencing: oscillopsia.
Yes, exactly what it I thought a few weeks ago. I let go of this idea when I started feeling nauseous and really dizzy. I assumed it was all one symptom but now I am under the impression that it was multiple symptoms that I simply mistook for one. Take away the dizziness and the nausea and I have textbook oscillopsia. The new definition I had found is so much more clear than the old one I was working with. I'm trying to get a referral to an ophthalmologist because obviously I can't diagnose myself, besides, I could be wrong. But knowing what is going on, putting a name to this sensation, it helps a great deal. Now I don't feel a lingering sense of unknown over my shoulder. Unfortunately, from what I have read, there is not really anything that can be done for oscillopsia besides steroids and maybe IVIG (according to some studies) all of which I have done or am still doing. So it looks like I am just playing the waiting game.
I hate the waiting game. Who doesn't? I have to play it when it comes to my health, my recovery. But I am also playing it with a lot of clerical BS. I had complained in the past about how my insurance kept denying all my medication and procedures. Well I got a letter the other day informing me that my Tysabri had been denied. I wanted to drop to the floor and just sink into the ground. What the hell is going on? I just can't catch a break! I had had enough. The next day I called my insurance and asked them to explain to me in plain English why they were denying my Tysabri and why they had denied my prescription for Acthar. Turns out, on the prior authorization forms that my doctor's office sent in? Nowhere did it say I had relapsing remitting Multiple Sclerosis and that I was suffering an acute exacerbation. I was furious.
I faxed both the letters to my doctor's office; I sent it directly to the nurse that handles this. I then tried calling every few hours but was never able to get a hold of her. I called again this morning as soon as their office opened and this time I got ahold of her. I won't go into the details about how our conversation went over but I will say this: she was trying to deny any personal fault and kept trying to interrupt me but I simply just kept talking as if she had not even opened her mouth. Denial? Deny all you want but I just spoke to my insurance yesterday and they told me exactly what I am telling you. She told me she would look into it and call me back. I will give her a few hours. I am beyond sick of being put on the back burner and then paying the consequences for it. So I will do whatever it is that have to do to make things happen.
This includes my situation with Social Security. So from what I understand, I was denied SSDI at my first hearing. I then appealed and at my second hearing they approve me for regular SSI. This was in 2012. I had been receiving benefits until December 2015 at which point I received a letter stating my benefits had been canceled and I had been overpaid $25,000. I talked to Social Security on the phone and I was told that they can't do that, she could see it on her computer that they never even sent out a three-month notice which they are supposed to do. So I went to the Social Security office were they broke it down like this: at that second hearing. Where they told me I had been approved? I was actually denied. Than the fact that I had received benefits for a matter of years was somehow a glitch in the system. So despite the fact that they told me I was approved and had paid me for around three years they are now telling me "Oops, looks like we messed up, we will go ahead to and take that $25,000 back", so they messed up, they acknowledged that they messed up, and I'm supposed to pay for their mistake? Tell me how this makes sense, someone who can't work and needs government assistance to pay his bills is now magically supposed to somehow start working and earning money to pay them $25,000?
I will fight this to the grave. Even if I won the lottery tomorrow and had millions of dollars to spend I would rather spend all of it on the best lawyers in the world to ensure Social Security does not get a penny back from me. This system is so broken! Because I have relapsing remitting Multiple Sclerosis their little computer algorithm decides I am not eligible for disability benefits because though sometimes I can do as much work as a tomato there are some times where I am in "remission", which I am sure all of you know does not mean I am 100% symptom-free, and should be able to work; like anyone could hold a decent job when every few months you have to call off work for a few weeks due to a relapse. It would be easier to get Disability if I broke my ankle and complained that even after it healed it’s still sore. UGH!
I am wholeheartedly trying to achieve financial independence and my government does not even want to help me get back up on my feet to become a functioning member of society again. Either you are 100% disabled or 100% functional, there is no in between. I will keep appealing, I will hire a lawyer, or I will write my senators, whatever it takes but this is causing me a ridiculous amount of stress. It's actually kind of funny, because let's say they determine I really do owe them $25,000. How do they think they are going to get that from me? I have no money, no income, no assets, nothing. Are they going to send someone with such a severe case of Multiple Sclerosis to jail? That will play really well on the news! All I know is I want this done. I am so tired of feeling like my life is nothing but a bunch of puzzle pieces waiting to be put together.
It's been really rough, mentaly, emotionally. It's like I want to give up but I'm too stubborn to give up. To give up would be to admit defeat something my personality just doesn't like. I can't really see, my motor function is falling apart, everybody is trying to deny me medication and treatment, benefits, and I get nothing in the mail but medical bills and bad news. There is a line from a movie which I can't remember word for word but I know how to illustrate the point. It's like the universe was looking around and spotted me and said, "there you are! I have you now". But I'm sorry to disappoint you universe, I just can’t give up, I'm exhausted from the constant struggle, pushing the boulder uphill; my inner being, my will, it is fractured but it has not shattered. How? I have no idea, like I said, I think I am just too stubborn and all this nonsense is nothing more than fuel to the fire that is my rage. I am stubborn and I am patient.
I may not be as active online for a while, I don't know, I'm having a rough time and I'm just going with the flow and doing whatever makes me feel best.