All posts for the month January, 2005

Ok, so today at work has to be the slowest I can remember in recent memory. So, all day I have been working on the new design to my music site. For those who don’t know, I create music with a buddy of mine, his name is Neil “NC Legend” Carilli.

If anyone is curious, the site is

and the updated design is @ This Page

Heed of warning, this site is a high-quality images site, so if you are on dial-up, 1) When can I smack you, and 2) It may take a minute to load

Tomorrow @ 7:30 am is my Tysabri drip, first one. I usually take my Avonex on Mondays (my legs are reminding me as we speak) but I get to skip that for now. If all goes well, no more shots.


So Tues is my appt, I’m supposed to get a call Monday with more insurance answers. So far they have told me I have a $100 deductable for the year and 10% copay. Hmm, this is starting to look a bit expensive. We’ll see.

Saturday of next (5th) is my wife’s birthday (23) and we have tickets for Sesame Street Live, then later on maybe a dance club. We are having a get together at her parents tomorrow, so very busy weekend for me since I have to wash dishes at 6 Sat and 12-11 on Sun.

Maybe I should hit the brakes a bit. Thankfully I requested the 5th and 6th off for Robbi’s birthday and the Super Bowl (come on, it should be a holliday anyway).

What is REALLY sweet is that next year, on Feb 5th when my wife turns 24, the Super Bowl is on her birthday here in Detroit. Man that is gonna be fun.

So it’s scheduled. Next Tues @ 7:30. 1 Hour drip, 1 hour whatever after.

And how much is one administration?


I need to make sure my insurance only makes me pay a co-pay for office visit or RX co-pay. If I have to cover %10-%20, I’m not sure I’d like to do that. I’ll keep you posted.

On top of the fact my wife just started selling Avon (my mom is District Manager), and is having great response. She also got a nice bonus which will help pay our bills we’ve been behind on.

Most importantly, my clinic called me yesterday with a message on the machine that said,

“Hello, Matt, this is Mary from Dr. Singer’s office. Please call me back so we can schedule an appointment for your first dose of Tysabri.”

WHOOOO HOOOOO insurance finally came through, and no more shots, just a 2 hr drip every month. Plus I enjoy being there, the 3rd floor where they administer iv’s is a dedicated MS clinic, so I get to meet lots of people with MS, so thats very interesting to get to talk to them about it.

Anyway, I have to schedule that appointment, plus my Avonex just ran out and I have a MONSTER headache again today from it.

Been a while since an update. My last post was about how great of a mood I was in, until the next day when we found out my WIFE’s car got vandalized. Back window smashed. 2 cars in one week. Someone has it in for us.

We’ve been looking for a new appartment, but I’m kind of worried about it. I dont realy want to move until we get a house, and I’m ok with staying until mid summer till our lease is up. I’m not sure if we can even afford a house, but if we move to a new appartment, I’d like to get a 3 bedroom so if we get stuck there, we can still have room for another baby whene the time comes.

I’m tired of dealing with this crap, and I want my Celica back, this rental Neon isnt kicking in.

Finally today, for the first time in a while, I feel like a normal person. No sore legs, no jittery hands, no major headaches. Its comforting to know that I’m not always in a state of decline, even if for just a day or so, I can continue with my day like I used to.

::big grin::

Lets start with Saturday…

I worked my second job as a dishwasher (heat and MS does not go well together, but I do it anyway) and got home about 1:30am. 3 O’clock rolls around and my car alarm goes off. I run outside only to find my passenger window smashed, dash/console destroyed, radar detector gone, and CD case took. Yea, great start to my Sunday. By the time the cops got there it was about 530, and I was in bed by 6am. Daughter wants up at about 830, so I struggle to stay awake while watching her. I’m supposed to work a double shift at the restaurant @ 1200 but didn’t make it in till 330 or so, worked till 11:30. Stayed up till about 12:30 after shower and such. Today I had to take my car in to the shop and get a rental. I didn’t get up till around 10:30 or so, I needed to sleep. Finally make it to work at about 2:00.

I still haven’t go enough sleep and my legs are sore and my hands are shaking again. My wife is upset with me because I’m “lazy” and would get out of bed. I don’t think she understands what its like when you don’t get enough sleep, work in a high heat environment on the weekends, and add that to stress.

To add to all of this, today is Avonex day, so I’ll be welcoming a nice throbbing headache tomorrow.

Ok, over christmas I wrote this “memo” to my family members, and figured I’d share part of it with you all. This is kind of how I was feeling over the hollidays, but the individual parts about my family have been cut out because no one understands it but us, so tell me what you think….



A mental view or outlook: “It is useful occasionally to look at the past to gain a perspective on the present”

My name isn’t Webster, but if I was, here is what my definition would say. Perspective is having a child and understanding when you go to Best Buy, you don’t automatically run to the video game or computer section anymore, you now walk straight to the children DVDs and not realize you do it. Perspective is getting married and all of a sudden, every woman on Earth now looks “just normal” and your wife becomes the supermodel. Perspective is being diagnosed with a chronic life-altering disease, and all of a sudden, life falls into place what really is important to you; not computers, not design, not games, but family and time.


Perspective is realizing that there are no such things as “dreams”, they now become goals. Dreams belong in fairytales, goals are obtainable. Perspective is flying to Las Vegas just to see if there is a slight chance you could get signed to a record label, and never wondering “what-if.” Perspective is setting a goal to retire at 30, and not resting until you do. Goals are, and will, be obtained if you push for it. I’m not one to remember dreams when I wake up anyway. Perspective is knowing no matter where you work, or what you do, you work 120% when you are there because tomorrow, you may not be able to. Perspective is loving and taking pride in proving someone wrong when they tell you “you can’t” or “it’s just a dream.”


Perspective is, most importantly, living today for today. I wake up everyday, and when I can reach down and pick up my daughter, it’s the greatest day in the world. I may not be able to do that one day. I have no choice but to live my life thinking this way, because, for me, it’s true. It has made me such a better person for it. “Love others as you do yourself. If not for the rest of your life, then just today. Never take for granted what you have and what you are all able to accomplish. Find and follow your own perspective, and NEVER put it off till tomorrow.”

So I found out Wednesday I had an appointment with my Neurologist and I dont know why. So I go into MINDS today (Michigan Institute of Neurological Disorders…catchy, huh?) and they ask me “So what are you here for?” I said, “I was hoping you were going to tell me, my next appt should be in March.”

Never got that solved why I had this mystery appointment. I figured, though, I might as well take advantage of it. I tell my doc I’ve been trying to quit smoking and its not working. The side effects of the Avonex combined with quitting smoking is too annoying. After discussion he decides to put me on Zyban for quitting. He then told me the story of how Zyban / Welbutrin started being used for smoking cessation.

Anyway, I have tried everything under the sun to quit, this may be my last hope. 7-12 week program for the Zyban, which is around when I have to see my doc next.

Take 2 of these and call me in the morning.