Symptoms, Health Care, Benefits, Denied, UGH!

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.

3 thoughts on “Symptoms, Health Care, Benefits, Denied, UGH!

  • April 26, 2015 at 5:52 am
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    Hi Matt,

    First off, thank you for being so candid and honest. Your post really resonated with me because your frustration with the health system is something I can somewhat relate too. My dad has various health issues and is dealing with a situation with social security. It boggles my mind that there is a health system that aims to aide people but in order to receive such help you must meet an array of requirements. I agree that our system is definitely broken. But like you mentioned, it is important to remain patient and persistent no matter how frustrating the process can be.

    Reply
    • April 29, 2015 at 1:05 am
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      Sorry to hear about you Dad but yeah. RE the healthcare system, being patient is easier said than done haha….

      Reply
  • May 15, 2015 at 6:16 pm
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    Hi Matt- I am thankful for your honest posts! Our system of health care is extremely difficult at times. Reading your sentence about someone has to be 100% disabled or 100% able to work kills me. This is so frustrating!! I hope this can change. I want to encourage you to keep on striving. To keep advocating for yourself and others who are also in similar situations. I wonder what health care will be like in 10 or 25 years from now. I feel like it is so clear to the majority of Americans that our system doesn't work but yet no one can implement a solution… Let's pray someday this will change.

    Reply

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