23 February 2008

A Past Life, But only a Shadow

Yes, I know. It's been ten days since I last wrote. Truth be told, I haven't had the desire or the inclination to even "pen" my name. Being a "summer" child, winter is never my best time of year. All of my craziness seems to come out. It was most prevalent during college. Nothing is more depressing than having to walk to class in the cold, then come home, do homework and then do the same thing all over again.

Volleyball always kept me grounded. Only a genuine love for the game would make someone get up at 5 in the morning drive two hours, play until 7 at night sometimes, and then party till all hours in the night. While my volleyball career, to this date, not as long as I would have liked, it was successful. It's broken down into two areas: indoor and outdoor. I started off playing doubles and moved to indoor to keep my skills up for outdoor. While outdoors it's just my partner and I; indoors had five other people. Five different skill levels, 5 different, personalities, 5 different temperaments. I could write an entire paper on what I hate about indoor volleyball.

Keeping it short, I became disenfranchised a long time ago. When the myelitis started last February, I had an excuse to medically remove myself from a team that I really didn't want to be on. I had no idea what was going on and the guy gene was preventing me from going to a doctor. Hindsight and all, If I went then, one steroid treatment probably would have done the trick.

I haven't been a part of the volleyball world for a while. Just like any circle where everybody know everybody else, stories get around. My face only made occasional appearances and then completely dropped out last July. I worked out for the first time in a month and when I saw that I had a voicemail from somebody I haven't talked to in a while. Made me an offer to play on a couple of co-ed teams.

Outside of my family and circle of friends, nobody really knows. It's not that I have a problem telling people. I don't. When your not part of that world any more, the chances aren't there. I've known this person for quite a while, so I got the truth out there from the start. Like most people, transverse myelitis doesn't register. Mention MS, and the ceiling just feel in. The MS isn't preventing me from playing it's the myelitis. I went through all of the things that suck. "The Steve that you knew is no more and I don't know if he's ever going to come back. Compliments of all compliments, and it's not the first time I've heard it, "You should play anyway because you would still be better than most people out there."

It's not totally a case of lack of skills, although they are certainly lacking not having played in 8 months. It's a case of looking foolish. I was two days into the first round of steroids and tried to play soccer. Mind you, the myelitis was pretty severe. Simple things that I had been doing for years suddenly became difficult. It was only two on two and I knew my friends would never laugh or anything and I know they wouldn't pity me to my face. I went for a running throw in and completely lost my balance and ended up on my face before I knew what happened.

To hear: "Oh how the mighty have fallen . . ." would be tough to bear. Of all the things that I've read from people that have MS, it's that they don't want to be pitied. My standing rule is that don't ask how I'm feeling. Ask about myelitis, ask about MS, but not how I'm feeling. First, I get annoyed with it because everyone skips over the myelitis and goes straight to the MS. Understandable. The unknown age of scar tissue in my brain and no presentation of symptoms can lead to one being annoyed with "How are you?" or "Why are you tired?" The last question probably sets me off more than anything. Although, not normally a nap taker, sometimes I just get tired.

This has been a longer rant then I had planned, but I had to get it off my chest. I go back to the neurologist on 3 March. Do I go back on steroids or not? Stay tuned.

13 February 2008


Just a couple of updates . . . From Monday's shot, I have a dime sized bruise. It is a lovely shade of puple with just a tinge of green. Such a lovely color for the coming spring.

Myelitis . . . still there, this week doesn't seem to be as bad. Still can't do anything really active or else my coordination goes down hill.

As tomorrow is Valentines Day, just a paragraph on the most commercial of all commercial holidays. Such has the holiday become that it stresses everyone out that has someone in their life. What do I get for that special someone? On the flip side, for those that don't have someone in their lives, all the forced commercialism makes said people constantly aware of how alone they really are.

As one girlfriend once said "Happy singles awareness day!" As another said "Don't you dare get me anything for Valentines day. If you truly care about me, there's 364 other days that you can and should show it. You shouldn't feel obligated just because everyone else does and if you don't show it the other 364 days, why are we together?"

Think and ponder.

11 February 2008

What's in a weak?

No . . . I didn't spell it incorrectly. True, I haven't written in a week, due to the fact that I was feeling rather weak last week. I had that mind splitting headache for 4 straight days. After spending 9 hours in a horriblly lit office and staring at a computer screen, the last thing I wanted to do was write. Also there has been a flu/lung something going around and miraculously enough, I haven't caught it. For those that don't know, one of the downsides of interferon is a weakening of the immune system.

On to a brief rant. In a former life, I had a desire to be an architect. Academicly, I only lasted a year, but the desire and the want was always there. The jobs that I have had have all been good. Working for my father, there's 2 acres of green space, other places had plenty of windows and natural light. When I went to work for my current employer, we were in an office park. There were plenty of windows: the walls were half solid and half glass and the building sat on the shore of a lake. Then in 2006 we moved . . . to a converted warehouse. There are windows, but nobody can see them, no fresh air other then what comes in when someone opens one of the two doors, there's no green space to speak of. Unless you consider the covered over garbage dump in the back. The walls are painted tan and brown and the carpet is burn umber and tan. The cube walls are light brown. There is so much floresent lighting that most people have headaches on a daily basis. As one student in a critique so eloquently put it: If I did that, I would never admit that piece of crap came out of my ass. Whomever did the interior design should be fired and publicly ridiculed as an idiot. If anyone has seen "Office Space" that's what I'm in.

The nurses from MS Lifelines called last week to follow up on how I was doing. While it is nice that they do it, it just adds to the confusion on my part. The nurse asked I was coping and dealing with my MS symptoms. My response was: "I don't have symptoms, I've never presented with any." After a pregnant pause . . . "Oh . . . It's good that your on the medication now because it will certainly reduce any flare ups you may have." No kidding.

That still doesn't help me on this journey to the great unkown. Also to top the week off, the old pharmacy called and said I should be dealing with my current pharmacy insteady of them for the Rebif. NFS. If they would have told me that in the very beginning, I wouldn't have missed an injection and delayed on by 24 hours. Instead, they call two weeks after the script ran out.

This weekend, I had a guys night in and played video games. After doing the dinner thing, I brought out Rock Band and two friends and myself jammed out. As much as we could, but every one had fun. It was good way to forget how crappy the week had been.

03 February 2008

Superbowl Sunday

There was absolutely nothing on TV today unless you wanted to watch the NFL pre-game that started about . . . last week. I haven't been to much of a pro football fan since college. I've always looked college football and the what the rest of the world calls football. As much as the commercials are good, they aren't worth having to sit through 3 hours of mindless bable form the announcers. Plus, I really didn't care about the teams. Although, given what happened with the Patriots this year, I didn't want them to win.

There is a saying in sports: "If your not cheating, you not playing." In baseball, it's about trying to steal signs. On problem, you may know your going to be thrown a fastball but you still have to hit it. Knowing the formation of the defense and arranging your pass routes to put receivers where the defense isn't makes catching the football that much easier. Congrats to the Giants.

On to me . . .

I've gotten used to the fact that every day is different. The myelitis makes waking up an adventure. For about the last week, every day is just a little bit better and then today happens. It's never as bad as before the second round of steroids, but bad enough that those thoughts of "if it gets just a little bit better, I'll be able to do all the old things that I used to do." I've given up on those thoughts a long time ago, but there is always that hope.

Hope that it will all go away, hope that it will go away enough that I can run or play volleyball, hope that the MS will never present, hope that hope will eventually pay off.