Thursday, October 27, 2011

Fuck Rebif

Rebif was one of the worst experiences in my life. I had 2 exacerbations in the 3 month period I was taking it. The exacerbations left me barely able to walk or function. If I owned a wheelchair I would have been in it. I dragged myself to and from the bathroom multiple times during that period.
They say it can take up to 6 months before the worst side effects wear off, well I didn't have 6 fucking months to wait and hope it got better. It was tearing me up. The shots were awful. After the titration pack you go up to 22mcg, things really got bad. The shots got more painful. The injection sites were bruised almost until it was time to inject in the same area again. Imagine for a second having big bruises that are tender to the touch on both legs, under both arms, both sides of your stomach and above your ass... every time you try to move you are reminded you have ms and your shit hurts.
So the shots themselves were shitty, then comes the side effects, the flu-like bull shit. I played around with the injection times. I was taking it before going to bed for a while, then a MSLifeLines nurse said it takes up to 8-12 hours for it to fully take effect so I should take it earlier in the day. The medication didn't care, it was a big fuck you no matter what time. It still caused me issues sleeping the entire time.
The next day after an injection was completely fucked. I would be so sore I could barely move. It was getting so bad I started dreaming that I was being held down and fucking beat up like a bunch of thugs were jumping me and then waking up feeling like I had been in fight. When that became a nightly dream I had to quit that shit.

I told my neurologist I was quitting it no matter what anyone said. I then requested to get put on Gilenya. He respected my request and started the process.
I did the pretests which include blood work, an EKG, and an eye exam. I had no issues with any of that stuff.
Gilenya got in touch with me, gathered some info and told me I would get the medication for free. My insurance specialty drug copay is $250 so I am thankful that they are giving it to me for free.
Three months now on Gilenya and no side effects. No issues, no complaints. I had some leg weakness at the beginning but I started taking it shortly before going to bed so if there is a side effect, I am not feeling it. I have the normal every day bullshit that comes with having MS, but nothing is magnified by the medication.

I want to make sure I am clear about a couple things regarding Rebif.... I was able to also get that medication for free thanks to their financial assistance program. Also, the MSLifelines program is top notch. They have nurses and people that are always available to talk at any hour of the day. You are assigned a nurse that calls every couple of weeks to check in with you. When you call them, that same nurse is there for you. So I have no complaints about the program and its nurses, but the medication.... fuck that shit.

Quick timeline of my MS bullshit

Started with little weird things like spasms and numbness. I really didn't think of anything at the time.

When I was preparing to move to another state from the town I grew up in I was under alot of stress. The getting ready to move and at the time I didn't know if I was going to get to keep my job in the new state by working from home. I developed this thing in my foot, it felt like a golf ball was in my shoe. I couldn't feel it with my hand by pressing on it, I could only feel it when I walked. But I was in the process of moving so I didn't have time for that shit. So I pressed on. The move was very hard with the foot problem that had me limping along, but we got it done. After the move within a couple weeks the thing in my foot started going away, so I thought nothing of it.

After 6 months of living in this new state I find out my girlfriend of 10 years (who I planned to propose to) is running around with some dick head she worked with. After months of lies and more lies I find out shes actually fucking this loser. During this whole time my eyes started bothering me and gradually within a month period I had double vision.
Went to an eye doctor (ophthalmologist) who diagnosed it as Superior Oblique Palsy of the 4th nerve. One visit she said it was my right eye, the next visit she said it was my left. She ordered an MRI.
Are you fucking kidding me? You tell someone that's 20-something some life changing shit like that over the fucking phone??
At that time I didn't know anything about MS other than the people I have known who knew or related to someone with MS was a fucking cripple. 
I couldn't even be consoled by the cheating girl that was still living with me (because I couldn't fucking see). I didn't want her to care for me. I was still so fucked up by that situation I didn't want her to touch me. All of my family lives 15 hours away. I was completely alone with this shit.

Ugh... so anyways, the double vision cleared up for the most part after about 5 months or so. I still have double vision it seems at night. I cannot see one set of stars or one moon. I would give anything to see right at night.
I also cannot look at any extreme corner of my peripheral vision or it goes double.

I did not have insurance during this time. I had been relatively healthy and had not been to a doctor in close to 10 years. But I eventually got a state ran high risk pool insurance. All of the initial doctor visits and MRI's were all out of pocket.

I started Rebif after about 2 months of the first MRI, and 3 months later started Gilenya. I have had an additional MRI that shows lesions in my spine so I may be looking at future disabilities. 

So there it is, I couldn't make this shit up, and I certainly wouldn't tell it at some goddamn campfire.

That's only part of the story. Can you blame me for not being excited for tomorrow and whatever bullshit it brings?

First post.. Blog cherry popped.

Here we go, first post.
I want to write this shit without going back and thinking about it too much. I could drive myself nuts concerned with how it sounds when you read this but I am just going to put it down with little to no edits. I want to look at this down the road and see how I was in the first year.
I can be an asshole, I know this. I can be way too cynical, I also know this. I know I am depressed at times but I am sane enough to know I am not bat shit crazy. 
Very unhappy with the way life has turned out. Certainly not what I had envisioned when I was younger, but I imagine that happens to most people. It's not by lack of work or motivation. There are just things that you cannot control. I don't give a shit what someone says or what bullshit quote they spit out about life, there are simply some shit you cannot control.
There is not a god damn thing I could have done to avoid MS. (in 20-30 years that statement might be untrue, but in 2011 it is.)

I want to knock someone the fuck out when I am told one of these two things:
1. "Some people have it worse" 
Yeah, well no shit, but I am not those people, oh and go fuck yourself.
I have to deal with my own fucking problems. And my own problems in my very own life really are bigger than theirs TO ME. I have spent way too much time of my life worrying about other people that I let symptoms of MS go ignored for almost 2 years. I will worry about my own shit and if I have the time or patience I will tend to others. If you think this is selfish, then fine, fuck off and worry about other fucking people meanwhile your life will go to shit. Just watch and see.

2. "I know [insert unlucky bastard's name here] who have MS and are perfectly fine."
Thanks for the fucked up way of telling me cheer up.
MS is an individual disease. It is different for everyone. I can go to a MS Meeting and see people in wheel chairs, but since I'm not in one currently I am not going to fucking feel better about my situation. That's looking into the fucking future. May not be tomorrow, 5 years, or 10 years down the road, but it's going to happen. If someone knows someone that has MS and is doing fine, they either are doing good for the time being, or they are a fucking liar like I am. I will tell any and all family/friends that I am doing great, because I don't want them to worry about me.

There we have it. Having a blog is something I have said I have never done, and didn't think I would ever do.
I will try to keep this blog up to date if I feel like it with different bullshit. I hope none of my family of friends come across this and figure out it is me.