Once again I find myself
waking up every morning hoping that I will be able to sit up and see straight.
Nope. Still dizzy. Still some minor double vision, which is making getting
around so difficult. I can hardly type as I keep hitting the wrong keys!
I called my neurology office
yesterday to see if the approval for my Tysabri was still pending. Everything
was; Tysabri, Acthar NRIs, LP, everything my doctor ordered but now there is a
Next I called my insurance,
well, my father had to help me because the numbers on my insurance card were
too small for me to read. They said they don’t have all the information they
need and that I had to call my doctor’s office to tell them to call my
insurance. Don’t you love being stuck in the middle? Why could they not just
call my doctor’s office and tell them what they needed? I guess that would just
make too much sense…
So I called my doctor’s
office and added a few more holes to my “Time Spent on Hold” punch card; 2 more
and I get a free additional 15 minutes of waiting on hold while listening to
classical music (over the sound of static) by America’s least favorite
composers of the 17th century! After I talked to them Biogen called
me to try to enlist me in another program that would help me with the costs of
the actual infusion, which I wanted. After half an hour on hold the operator
asked if I wanted to continue holding until a representative was available or
have them call me back. I was struggling to keep my eyes open so I opted for a
call back. I took some Benadryl and Klonopin and I knocked out for the
remainder of the day. Sleep is the one way to really escape this double vision.
I think I may have mentioned
this already but I have been using my cane here and there. It’s a bit depressing
to see myself going backwards. When I am in the kitchen I can hold on to the
counters to get around but in other places there is nothing to grab on to so I
need my cane to keep me balanced. If I start feeling the handle press into my
hand more than usual, then I know I am leaning into it. If I feel the pressure of the
handle on my hand growing weaker I know I am leaning away from it. Stairs are
fun; I usually take a few steps and end up on a knee and a hand. I am really
trying to not go up or down unless it’s absolutely necessary.
1 more month and I enter
“rebound territory”, that is, usually after 4 months without Tysabri, those who
did well on it have a rebound, not a relapse. It’s like a withdrawal from the
medication where you have the worst relapse ever and the disease activity increases
by about 3 times including the number of lesions you have. I have been trying
to get Tysabri and Acthar since December (before I even moved back to SoCal)
and come to find out it’s my damn insurance that is doing this to me! Don’t you
love it when your life is dictated by paperwork that you have no control over?
I have no idea what I will do
if I get into the 4-month realm… Especially because next week we are suppose to
me in the mid 80’s (27’s C) while everyone on Facebook is posting pictures of
the FEET (30cm +/-) of snow they are waking up to. I miss it so much (the cold
weather). I want to build a styrofoam insulation box with a portable A/C in it
within my room so I can survive the summer. I’ll take as many online classes as
I can so I don’t have to go out in the 110F (43C) degrees average temperature
the “summer” will bring. Once I graduate I can save up, look for a job back in
Colorado and move back with a better foundation.
I have a reliable car, I want
10 grand in a savings account for emergencies and so I can fly back to see my
SoCal neurologist whenever I need; I know what to plan for now. Time to do it
right. I just can’t wait to pay off all my medical debt so I can really feel
like I am moving to start a new life with a clean slate. I didn’t do it right
last time; it was an act of desperation and though it showed me what I want it
bit be in the ass because I was far from prepared.
Anyways, wish me some sort of
recovery (I would say speedy but I have realistic expectations here haha), this
sucks (duh) and I am going to miss this semester of school, which I really
wanted to attend. Oh well. When the time is right I suppose.
  •  Double Vision (closing one eye doesn’t help)
  • Vertigo
  •  Poor Balance
  • Weakness
  • Extreme Fatigue
  • Minor Cognitive Impairment
  • Difficulty Coordinating (mostly fingers)

7 thoughts on “

  • February 3, 2015 at 8:03 pm

    Best wishes for your recovery Matt! 🙂

  • February 7, 2015 at 3:56 am

    I always thought that the US health system is different and patient-centered, meaning a way of thinking that we don't have here in Europe. Your sad experience demonstrates me the opposite.
    So I guess health systems are the same all over the world.

    Hope you get a favorable answer soon from the Insurance company.


    • February 19, 2015 at 8:00 pm

      lol no, all this and I HAVE insurance. How ever bad Europ might be the States treat their citizens like garbage…. blah!

  • February 19, 2015 at 8:03 pm

    I have not forgotten, sometime I just look at this as "a reminder". I am stubborn so I know I will get through all this Im just tired of it. blah….

  • March 28, 2015 at 6:06 am

    Thanks for the blog, Matt – I've learned a few things. I'm currently on Tysabri so I know what you're going through. I stopped taking it, for no good reason, and had the "rebound' just as you described it! I'm back on and things are going better. Now for my point – you can call Biogen at 800-456-2255 and apply over the phone for their Infusion Copay Assistance Program and $10 Copay Program, irrelevant of your insurance. Wish I had know earlier! Good luck!


Leave a Reply