Tuesday, March 24, 2015

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.

Saturday, March 21, 2015

Am I Getting Better?

It’s hard to tell; change can be so gradual. My vision still sucks but when I think back to a month ago and compare myself to now it’s very different. I am getting around a lot more and trying to do more things on my own. A lot of that probably has to do with the fact that I have actually been sleeping!

I have been taking 30mg of Temazepam (Restoril) along with 5mg of Melatonin every night this week and I have been sleeping pretty… well, I have been sleeping haha. So my mood and energy level have been better. Then, yesterday, I decided to start taking Ritalin again to see if I could get more than showering, eating, and sitting at the computer all day, done. I am supposed to take 5mg twice a day (I wanted low) but I took 10mg all at once yesterday morning and I felt so great. I got so much done! Enough to impress the NOT-relapsing Matt. I took 10mg again this morning so lets see how that does. It seemed to have lasted till about 8:30 last night or maybe the feeling of being less tired was mistaken for feeling like I have energy haha. Either way, I was more productive.


I just want my vision/balance to stabilize! I am getting around better because it’s probably improved a bit and I have got used to it but it’s still very limiting. At least my fine motor skills in my hand seem to be much better making typing easier. A computer screen is flat so my eyes can easily focus on it well enough for me to write and read some but if I stare at it to long it makes stepping away difficult. It’s like my eyes get used to being at a set focus and then stepping away requires them to start constantly adjusting so I have been trying to stay off the computer or at least limit my time and instead just walk around so my eyes constantly have to readjust. Maybe that will speed along the recovery of my vision? I don’t know but it feels better to not sit down all day either way.

Wednesday, March 11, 2015

Everlasting Insomnia Takes it’s Toll

So the other day I had some pretty bad insomnia. The next day/night I took a bunch of medication to help me sleep. The following night I had even worse insomnia. I think that was bad grammar but whatever, I don’t feel well. I could not drift off and the TV (which I turn the screen off of and use a sleep timer on just so I can hear noise) kept turning off even when I set the timer for an hour and a half. I never hear it turn off even when it is set for just an hour! I suppose an hour is still a long time but I have always had trouble sleeping for the last few years. Anyways, I didn’t want to get up and take medication because part of me thought if I just gave it a little longer I would fall asleep on my own.

Just a little longer…

Just a little longer…

“Oh wow, it’s 3:00am and I have been in bed since 9:00pm.”

I was wide-awake and now I was just angry, annoyed, fed up. So I got out of bed and did what you're not supposed to do when you can’t sleep; I got on the computer. I surfed Facebook for a while, listened to music on Youtube, and did some reading. I was still wide-awake – I was physically exhausted but mentally I was wide awake. I tried lying back down but after an hour of shifting around in bed I gave up again. So I turned the TV back on and started watching the first season of House.

Later I tried walking around. My vision had tanked again and I could not walk. My balance was horrible. I watched House all day, literally, until 8:00pm! Then I took some Tylenol PM and 50mg of Benadryl and tried to sleep. I kept dozing off and then some sound would startle me awake. Finally I fell asleep but how deep of a sleep I have no idea. I had a dream I was on the planet Mars in the not to distant future watching someone try to break the record for how far a football can be thrown on Mars and then I was driving around on Mars listening to a friend tell me I should join AARP to get cheaper car insurance. “But you have to be over 50”, he kept telling me to which I would reply, “yeah, I know, you said that, and I am not!”

Now I am talking to someone about Mars (back on Earth) wondering when a Toyota car dealership would open on the planet. Would Ford beat them there? I woke up to hear my TV did not turn off; I forgot to set the sleep Timer. The Science channel was on so I just laid there for a while, listening, trying to convince myself to get up. “The Universe” was on (Mars) and then it switched to a commercial brake. Some show about beating the world record for throwing a football with a machine, AARP and then an auto commercial. So I guess I was in that half awake half asleep state and my brain was turning the sounds of the TV into my dream…

I feel a little more “stable” today, as in, I can walk. My vision is still not great but it’s better than yesterday – not as good as 2 days ago but better than yesterday. I can’t do this. I need sleep to get better but I don’t want to keep using medication to sleep. I had mastered overcoming insomnia without medication but ever since I moved back from Colorado I have been having such a hard time sleeping… I miss my silent apartment so much.

Ugh… I just want to see again. I want to not feel dizzy.

I think I will take something tonight and talk to my neurologist tomorrow (when I see him before my Tysabri infusion) about what I should do or take because I have tried everything over the years! Fingers crossed… Oh, yeah, I am supposed to do my IVIG on Friday so we will see about that…


Must be California spring. I left my window open all night and it never got cooler than 70 degrees F (21C) in my room. Summer will be fun!..

Sunday, March 8, 2015

Insomnia; IVIG, Just Kidding!

I used to have insomnia issues all the time when I was first diagnosed with Multiple Sclerosis but after a while it let up. Last night (for whatever reason) it got me good. I still can’t really see so I lost track of the time since my clock is on the other side of my room. I went to bed at 9:00pm and just laid there waiting to drift off as I listened to the History channel as I do every night. I turn the screen off so it’s just sound, no light to keep me awake.

I knew I had been up a while as the sleep timer kept turning the TV off and I am never up to see/hear the TV turn off. Eventually I fell asleep around 4:00am and then I woke up; I could hear my Dad getting ready for work, which meant it was 5:00am. I got up and saw the time: 5:00. Not like he was loud, I always sleep through it but for some reason, the one time I should be completely knocked out, I woke up. Could I go back to sleep? Nope, I was wide-awake again! What the heck?

I stayed in bed till about 9:30 wondering why I didn’t just get up to take something that would knock me out and then I got up. I felt a little more off balance than I have been lately and my vision was a little more… whatever it is right now. So because I only got about an hour of sleep I feel like I have taken a step backwards instead of forward.

I knew I had to stay up till 9:00pm (at the least) in order to not screw up my schedule so I took some Ritalin and made some coffee. I still feel like a Zombie and that bed of mine is calling me like the ring  (Lord of the Rings reference haha). I have to fight it! 6 more hours or so to go… Oh yeah, I have had a headache all day, it came on before I even got out of bed so that has been lovely.

It’s so hard to want to do anything when your feeling “MS sick” but when you are running on an hours worth of sleep and you have a headache on top of it all? I have no idea why I am even writing. Trying to stay busy I suppose.

Oh yeah, for the last few days I have been trying to get around the house without my cane. I am bouncing into walls and rather unstable but hey, I could not walk like this a week ago; progress.


Oh yeah again, I almost forgot. I got my IVIG stuff Friday night because they wanted to do my infusion on Saturday. This has been interesting. First of all they never called me to ask what I need so they sent me everything including a new IV pole and IV pump. My old pump was nice and small but this one is the big green one they use in hospitals. What is funny is this new pump weighs a lot, like a car battery, and the pole they sent with it? It’s super cheap aluminum, thin, it feels like the handle to a Swiffer. I put the pump on the old IV pole I have (which is made of steel) and even that was starting to bend! Supplies; I have so much tubing, alcohol swabs, syringes, needles, gloves, gauze, etc. I am running out of space! I could have done two infusions and still had leftover supplies before they sent me more! Now I really am ready for the zombie apocalypse, they even sent me a couple vials of epinephrine so I am totally set! The nurse never showed up on Saturday and no one could get ahold of the nurse scheduler to find out why so that didn’t happen. I swear, if I could see well enough I would have just infused it myself! (Just kidding… kind of)

Wednesday, March 4, 2015

Update (Attempt) – Relapse/Rebound

I still can’t see so this will be very basic. I had double vision for a while, oscillopsia (with nausea), all topped off with blurred vision. Vision is still very blurry and slightly doubled (maybe oscillopsia again but not as severe; no nausea) .

I was so nauseous I could hardly eat or even move my head left or right. Weight loss, yay! My balance is horrible but I ditched the walker and am back on the cane.

I feel like if my vision would get better everything else would follow. I rely on my vision so much for balance…

I need to start working my legs out because that is where I can tell I have lost the most muscle mass; I really feel it when trying to get up from (lets say) sitting on the floor. But without vision I don’t have the balance to do things like squats, hell, I can barely get around some days.

This mostly started with motor issues like the inability to produce rapidly repeating/alternating movements on my left side only. Now it’s either not as bad or masked by all my visual and balance symptoms.

This is not nearly as bad as when I spent all that time in the hospital/physical rehab back in 2012 but this is definitely second place… Doesn’t help when insurance denies things and my doctor’s office doesn’t want to do anything. I should have stayed in Colorado, risked PML, and found a new neurologist out there because I would have avoided all of this. Oh well, if I can go to school and start an actual career I can move back with lots of money/stability and a reliable car so it will work out; I am just really impatient.


That’s it for now, my eyes hurt, even on this big screen I am using (see picture above).