08 December 2008

The year in review

This is how much shooting up becomes a normal part of your life: I started shooting up a year ago last week and didn't even remember. It's been 156 injections, 13 boxes of syringes, and if I didn't have insurance, around $29,000 just for the shots, five months of knocking myself out to make sure I slept through the aches, chills, and pounding headaches, two months of steroids, 5 days of an IV bag, 3 hours in the MRI machine.

Where am I know? Probably worse off than before. Add a new sensation of the tips of my fingers getting all tingly. What fun. Everyone should join in it. Everything I read and the word on the street is that it's an individuals disease: nobody is the same. One of the underlying symptoms that everyone seems to have though is bouts of tiredness. I can say I've never had it. Sure, I've needed naps from to little sleep, but never from exercise or just living life.

Is all this the MS or is it the myelitis.

I let somebody shoot me up this weekend. She's studying to be a nurse, so a little practical experience wouldn't hurt. It was leg day so no matter what she did it wouldn't hurt to bad. She was a little enthusiastic with the insertion. Since there's very little fatty tissue on my legs, she got it a little more in the muscle than I usually do. No big deal. Just felt like I got punched. I would recommend that we all let somebody inject us. I don't have a problem injecting myself, but when someone else does it, it doesn't quite hurt as bad. With drug trials for pill form, injections will be a thing of the past. Not for a few years though: FDA approval and then the insurance company covering it.

Always a happy thought. Our well being is contingent on whether or not somebody else will sign off on it.

22 November 2008

Empty and Black

Since someone was kind enough to respond to a post, I'll answer that first. The basic gist was that this person knew four people that have MS that had mono at an early age and wanted to know if I did. The answer to that is no. It is an interesting statistic though. If there is any correlation, it's not surprising. Autoimmune diseases are ones that put the immune system into overdrive and start causing the body to attack itself. Anything can trigger it or nothing can.

Yes, it's been another long silence since my last entry, but what is there really to say? One day is a mirror image of the last. I wake up, I have to get slowly out of bed or else I'll fall right over. My ankles and knees are so stiff that I look like Frankenstein's monster walking. I go to work and sit in my little cube a shadow of who I used to be. Oh, the flippant remark makes its presence known every now and again, but the quip a second person is missing. It's hard to be what you once were or even attempt to be that person when it's a struggle. Sitting to long makes things stiff again. I come home and and plant me butt down. Every day I tell myself that I need to work out. I need to make myself work out. Then despondency sets in: What good will it do? I can't do cardio without turning into a board. It sucks and I hate this.

I'm lumping in the myelitis and the MS because right now they are one in the same. Obviously when somebody is first diagnosed with something, they read as much as they can about it. It's only natural. I came across one article that was hard to believe at the time and then other articles just affirm what I already know.

MS is an internal disease. There's no outward sighs even though the effects can be seen as a result. When you say you are exhausted it doesn't look like it from the outside. When you say your legs hurt more than normal, nobody can see it. If somebody knows you really well, they can tell by the look on your face with every step you take. But who really pays any attention?

The other thing was how people react to you when you tell them that you have an incurable disease. Reactions can run the gambit: an over-abundance of attention, ignoring the fact entirely and treating you as normal, to total isolation.

I've seen it all. My close friends treat me normally but work around the bad days and put up with it. They let me do what I can and keep an eye on me. Parents treat me like parents: every little thing is monumental. Others ignore it completely and say things could always be worse or look at this person and see what they are going through. Others run screaming. Others give the appearance of concern, but you know they are just putting forth the facade that mean well. Selfish or Selfless.

02 November 2008



WHEN I see birches bend to left and right

Across the line of straighter darker trees,

I like to think some boy's been swinging them.

But swinging doesn't bend them down to stay.

Ice-storms do that. Often you must have seen them

Loaded with ice a sunny winter morning

After a rain. They click upon themselves

As the breeze rises, and turn many-colored

As the stir cracks and crazes their enamel.

Soon the sun's warmth makes them shed crystal shells

Shattering and avalanching on the snow-crust—

Such heaps of broken glass to sweep away

You'd think the inner dome of heaven had fallen.

They are dragged to the withered bracken by the load,

And they seem not to break; though once they are bowed

So low for long, they never right themselves:

You may see their trunks arching in the woods

Years afterwards, trailing their leaves on the ground

Like girls on hands and knees that throw their hair

Before them over their heads to dry in the sun.

But I was going to say when Truth broke in

With all her matter-of-fact about the ice-storm

(Now am I free to be poetical?)

I should prefer to have some boy bend them

As he went out and in to fetch the cows—

Some boy too far from town to learn baseball,

Whose only play was what he found himself,

Summer or winter, and could play alone.

One by one he subdued his father's trees

By riding them down over and over again

Until he took the stiffness out of them,

And not one but hung limp, not one was left

For him to conquer. He learned all there was

To learn about not launching out too soon

And so not carrying the tree away

Clear to the ground. He always kept his poise

To the top branches, climbing carefully

With the same pains you use to fill a cup

Up to the brim, and even above the brim.

Then he flung outward, feet first, with a swish,

Kicking his way down through the air to the ground.

So was I once myself a swinger of birches;

And so I dream of going back to be.

It's when I'm weary of considerations,

And life is too much like a pathless wood

Where your face burns and tickles with the cobwebs

Broken across it, and one eye is weeping

From a twig's having lashed across it open.

I'd like to get away from earth awhile

And then come back to it and begin over.

May no fate wilfully misunderstand me

And half grant what I wish and snatch me away

Not to return. Earth's the right place for love:

I don't know where it's likely to go better.

I'd like to go by climbing a birch tree,

And climb black branches up a snow-white trunk

Toward heaven, till the tree could bear no more,

But dipped its top and set me down again.

That would be good both going and coming back.

One could do worse than be a swinger of birches.
-Robert Frost

01 November 2008

Another Long While

Just like the title says it's been a while. Not much has changed. . . things suck. I still have the tingles, the tightness, all that other stuff. So . . . is it the myelitis or is it the MS? Part of me says the myelitis but the other part says MS. Not that it's an impossibility, but it just seems strange that I would get an exacerbation in the same spot that if have inflammation from the myelitis. It's not as bad as when I first went to the neurologist, but it's close.

I'm just in a down turn. My motivation to do anything is non-existent. I haven't been working out. I always go through cycles but it's just been harder this time to get back into it.

It's been a while since I've done a "My favorite singer/band" so hears another one: Charlotte Church.

She's kinda of faded into anonymity in this country, but she's still popular in Great Britain. She started out as a wee little girl with a huge soprano voice. She's done mostly opera and classical, but she did come out with a pop album three years ago. Listening to it, one would never know it was her. She has or had her own talk show, had her fair share of run-ins with the press, but she's come through it all. She has bigger balls than some men. She's 22 now, mother to one with another on the way.

18 October 2008

Thought for the Day

``Never shall a young man,Thrown into despair
By those great honey-colored
Ramparts at your ear,
Love you for yourself alone
And not your yellow hair.''

``But I can get a hair-dye
And set such color there,
Brown, or black, or carrot
That young men in despair
May love me for myself alone
And not my yellow hair.''

``I heard an old religious man
But yesternight declare
That he had found a text to prove
That only God, my dear,
Could love you for yourself alone
And not your yellow hair.''

William Butler Yeats

14 October 2008

When Darkness Comes

It has been a while since I've written.

What's to tell since my last post that the steroids weren't working? As of Thursday it will be three weeks since I got off of them and I am probably worse than when I went on them. My brief attenpt to play volleyball ended. I had no choice but to back up. If my legs and knees are stiff and I'm all wobbly when I walk, what is the point. My pride and the memories of once was limits me. How can one devote ones self to the sport that I devoted myself to for over two and a half decades and am now just a shadow on what I used to be.

Added to my frustration is the fact that upon prescribing the steriods, the neuro said to call if they weren't working out. I called last Tuesday, asked to be put on solumedrol and another round of taper. Nurse called on Wednesday, described that the last course didn't work. I didn't hear back until Thursday. Response: You're just going to have to deal with it.

Which leads to two thoughs: Is it just the myelitis or have I presented? None of the typical symptoms of MS have ever shown up. What does one believe? What does one do? I haven't worked out in a month. I want to go back but . . . my desire to do anything is non-existent. If I don't feel like myself, If I don't feel . . . what's there to do.

Outwardly, I put up a good front, inwardly . . reluctance, depressed, frustrated.

19 September 2008

Teneo vestri ego

To know ones self. . . Just as before, the tablet steroid taper didn't work. I still have one day of two tablets and five of one. Just as before, starting about halfway into the 60 milligrams, it just came back. I should have stuck with the direct infusions for the five days and the 20 day taper.

I also played volleyball last night. The new league started that I agreed to play in way back in June. Mixed blessings. 4.0 on passing/-.500 on hitting percentage/7-to-1 on ace-to-error percentage.

Next week . . . could be entirely different.

F it all to hell.

09 September 2008

"No news is good news; If it bleads it leads . . ."

When there's nothing to report, it's boring. Go back to my recent post of people that say they don't let their disease rule their lives. With any flare up of MS, the treatment is steroids, if the flare up is bad enough. The taper packs that are given to people for skin allergies or poison ivy/oak aren't anywhere near to what I take.

Saturday, as usual my knees felt like exploding and my muscles burned. Nothing to worry about. It happened the last time. Before I ever had steroids, I was told get used to no sleep and that was from somebody on the small doses. It's no joke. I finally fell asleep about 3 in the morning and woke up at 7 and dozed for another 90 minutes. Sunday, pretty much the same thing. Monday, get ready for work which meant buying Red Bull on Sunday.

The cool thing about steroids is that even with the lack of sleep, you're still wide awake. Until you crash which usually happens every couple days. Yesterday was the crash. Now, no sleep on Tuesday or Wednesday, crash on Thursday.

As with the last time, the 80 mg work well. 60 mg starts on Thursday. Does it go back to the way it was or does it stay minimized until the next flare up that won't go away? Time will tell.

Tell me how someone can say that they don't let their disease rule or dictate their lives when they have to face three weeks of no sleep, increased appetite, increase weight?

05 September 2008

Pass the Juice

Since someone near and dear accused me of being rather lame lately on publishing my posts, how about back to back posts?

I had my six month check up with the neurologist today.These things are always a little apprehensive since you have to divulge every little bit about "How are you feeling?" The sad part of it is besides being on disease modifying drugs, there's not a damn thing they can do for you. The usual treatments for exacerbation's are steroids. Which aren't any joy either. Anybody that has done a taper pack for a skin allergy can kind of equate. People with MS and transverse myelitis get mega-doses.

Since my flare up is probably myelitis, since I don't have the usual tell-tales of an MS flare up, I get to go back on the steroids. Pass the juice, please. My mega-dose is 80 Mg's for 5 days, 60 for 5, 40 for 5, 20 for 5.

Welcome to 20 days of sleepless nights and a case of Red Bull to get me through the mornings for the next three weeks. As much as it sucks having an IV line in for 5 days, I would have rather had the Solumedrol which delivers 1 gram of prednisone in an hour and then done the taper. But I'm not the doctor. Also had a major misconception that you can't be on steroids and interferon at the same time. Evidently, you can.

I will bid everyone goodnight on my final night of a good sleep for a while and if anyone wants to call me, I'll be up. ;-)

04 September 2008

Che giova a te, cor mio, l'esser amato?
Che giova a me l'aver si caro amante?
Perche crudo destino -
Ne disunisci tu s' Amor ne stringe?

01 September 2008

Selfless or Selfish

I had been thinking about writting this for a while. Yes, it's more of philosophy from Steve. Call it a guilted and jaded view on life, but of those who know me, even though they may not agree with it, they can understand why I would say what I would say.

I tend to believe that we humans are more selfish than selfless. Does selflessness even exist any longer?

I posed this question just the other day with someone I would never have expected to have this conversation with. If someone donates $5 and they feel good about their donation doesn't that make the act one of selfishness as opposed to the person that gives $5 and doesn't care about it afterward?

Does the phrase "Doing something out of the goodness of the heart" even exist any more? Are any acts of kindness done just to do them or are the self-serving? When asked to do something do we say yes without thinking about it or do we consider the issues that lie beneath as something we can use later on.

Something to think about and comment on if one so chooses.

27 August 2008

The roof, the roof, the roof is on fire . . . make that the feet

Yes, it has been almost three week since my last post. The myelitis has really flared up. I had a flare up about a month ago, it went away and then really came back a week later. Spastic calf muscles and my feet were on fire. It got so back that I had to dispense with my normal business casual attire for work. The dress socks and shoes had to go. Nothing like that constant feeling of walking on broken glass. Out comes the no show socks and running shoes. Fortunately, dress shoes and running shoes are black so nobody noticed. This week has been a roller coaster. Some days good, some days not so good.

My foray into personal training is probably about over. As most people do, they give working out about a month and then give up when they don't see any results. Said person was told change your lifestyle or you are heading for an early grave. Fear of dying is a great motivator. At first. Then the old habits kick back in and the questions arise:

Why am I doing this?
What good is it?
If nothing is happening, why continue?

I've always been active and it wasn't until about 33 where I felt the need to work out in order to keep what I had for volleyball. There were some months were I didn't work out at all. Since I was diagnosed, there has only been a week here or there where I didn't work out. It has taken a really long time to develop and tone muscles. Always being athletic and competing on a higher level, I know it was going to take a while.

I told said person that. Don't give up on yourself, you have to make a commitment to it and after a while, it becomes a habit and then it something that you get addicted to. Fall out of it and it will be hard to get yourself back into it. Keep a positive mental attitude. After a tough week, back come the cigarettes and the rationalization. Forgotten is the thing that got it all started in the first place: Change or die.

Thought for the day.

07 August 2008

What is time?

Someone once asked Albert Einstein to define time. In the man's wisdom, he said "Time is what is says on the clock," or something to that affect.

Was it the man's intellect coming through to say there is no definition of time? It is something that just is. Time has no meaning except for what we define it as. Or is it something else?

I think we define time as those empty periods between the moments that fill our lives. When our lives are filled, time stops. Every sunrise is fresh. Something never seen before. Every little thing has meaning. The air smells wonderful and we breathe it into our toes.

Take that away and life is but a series of empty moments. The sameness rules the day. Everything is the same no matter how different. Then something comes along that changes those empty moments into full ones.

I think when someone has a disease, time takes on a different meaning. If someone says they don't let their disease rule their lives. Don't believe them. In some way, no matter how minuscule, it does.

My shots are just something I do three days a week. I don't even think about them anymore. I just know that I have to arrange my schedule or shoot up where I am. Granted, I'm supposed to shoot up about the same time every time. At this point, I'm past the side affects so timing isn't that big a deal. But, I digress . . .

Now, I measure time as good periods and bad periods. I've had a good period for quite a while. This week sucks. I am having a myelitis flare up. My left calf has been cramped since Sunday. Half my left leg is numb and tingly and the other half isn't. My feet are on fire, yet I can't really feel them.

Yet . . . I continue on. I don't let my disease rule my life. I got over the fact that the athlete that I was has died and will only be reborn if the myelitis goes away. Yet it is something that I have to face, deal with, and live with everyday.

03 August 2008

Long time, no see . . .

Yes, it's been three weeks since I've posted anything. Mostly, I've been busy and secondly, I haven't had a lot to say.

I ended my hope of a one and only stop on the "Steve's farewell volleyball tour." Maybe it was my lack of desire or that distant knowledge that once was will never be unless the myelitis goes away. I have all this knowledge in my head and yet the body that the knowledge commanded changes on a daily basis. It's not only because I am rusty, that has a lot to do with it, but there's no consistency of what my body can do from the times I play. It sucked have to pull out of the tournament, but it was the right thing to do. It wasn't fair for my doubles partner to play with me for just one more tournament. Given the way things went, maybe I should have played. But, that is in the past.

I've been busy with the house. I've cleaned the carpets and put in a speaker system for my theater. The carpets were so dirty that it took an entire day and they still aren't totally clean. The speakers took about 4 hours and mainly it was running lines. It should have been taxing at all, yet I was exhausted afterwards.

This weekend was spent working. The "not mandatory," mandatory overtime was yesterday morning and the person that ordered it wasn't there. It's called a command function, but if you tell people you oversee that there is overtime that everyone is encourage to attend and if not, it's held against you and that person doesn't show up, it's called being a hypocrite. It's such a good way to instill that warm teamwork feeling. I worked out after that and there was basically the entire day.

Today I had to work at the family's business. The deal to get my parents out of the house sooner was that I had to work. Granted, it's not in full scale production, but I still have to do it. So, another 3 hours working on the weekend. In the last two days, I've worked eight hours. The supposed weekend that's used to refuel and recharge went out the window. From now on, when there is the "not mandatory," mandatory overtime, I'm going to have plans.

Health wise, I have been fine. I'm still working out 4 days a week and throwing in some cardio as well. It's good to sweat. The shot's still hurt like hell. Sometimes it's enough to get me cussing.

That's really all I have to write for now.

13 July 2008

Screeching Hault to the Farewell Tour

Ya, I know, I haven't written in a while, it's just been really busy. The parents decided to come home a little early and it's been absolute chaos. In addition to packing up their belongings, I had to obtain a few of my own. In addition to trying to keep things where there's little disruption in life, it's a been a little stressful.

Also, I've started some personal training. I never had a problem working out by myself, but having somebody I can direct and workout with is nice.

My birthday was pretty atypical. Had dinner with friends and then home because I was pretty exhausted. For those who knew it was my birthday and didn't wish me a happy one, I'll remember that for the future.

I've played volleyball a few times in the last couple weeks. Twice in sand and once in the grass. Sand . . . sucks. As in my previous writ ting, the things that came natural aren't. It seems that my brain is short circuiting and I can't decide what I want to do. This weekend was going to be my last tournament. Honestly, it didn't matter if I played or not. My partner has run into some babysitter options and I may not be able to play. I'm not all that broken up about it.

Health wise, everything is the same. The days all run together. The shots are just something that I do every other day. I don't really think about them anymore and I don't have any side affects.

23 June 2008

Pontification for the masses

This week won't be exactly on topic and that's okay. Last week was a little rough. I played volleyball on Tuesday and Thursday. Thursday was better than Tuesday, but that person that was graceful and light on their feet is no more. I fall down like a house of bricks and can't pop up like I used to. Such is life.

I missed my shot time on Wednesday by three hours. I don't know if I paid the price for the next day or not, but I felt like crap. It was either that or my allergies or both. Friday's, as always, are the enjoyable shot days. It was in my left leg which is the worse out of the two. I think I could jab myself with a screwdriver and I wouldn't feel it.

Saturday was a sad and depressing day. I held and fed a three week old little girl. The mother . . . a child herself. "Sins of the father . . . " is just as applicable to mother's as well. The new grandmother, age 35, gave birth to her child at 18. Said child gave birth at 17. What does the future hold for this little one?

When one has an outside perspective, it's possible to see things coming a long way off. Not that I am expert in raising a child, far from it. I have coached enough children to know a problem when it exists. Only to late did the mother realize her child was on the wrong path. By that time, at age 15, she was beyond reach and help. Nobody is beyond help, but when the person to provide it is lacking in a moral compass and is just a self centered as her daughter, what help is there?

Where does everything stand now? The mother of this precious child no longer has custody. DFS has awarded custody to another relative. Sadly, the mother probably does not care. "I have been relieved of burden." The selfish always turn things around to fit themselves. This self centered child will undoubtedly change this around to fit her own purposes. "Poor me, my child was taken away . . . pity me and adore me for I am the down trodden!!"

This tiny little baby has a very uncertain future ahead of her. It is very likely that the mother was a druggie. Only time will tell if there is any permanent damage. She is active and does cry, but at three weeks who is to say if that is a good sign or not.

I feel sorry for this little girl because nobody should have to grow up in such a situation. As I said, sad and depressing.

In that theme: White Lion - When the Children Cry.

17 June 2008

"On the dark side of the moon . . ."

Such is summer . . . the time of being busy and just hanging out, spur of the moment plans and enjoying the moment.

The shots went okay last Monday and Friday. Wednesday's almost made my knees buckle it hurt so bad. Thursday, I did something I haven't done in a long time. I left work, went to the courts and played volleyball for a couple hours, went to the Y, played in a league game, went and got some dinner and then went back and played some more sand. Friday was a little rough but it was worth it.

Today, I played again and played horrible. Not that anyone else could do any better. It could be that I am just out of practice. Fundamentals are called that because they are fundamental. When I was at the top of my game, the fundamentals were things that I didn't have to think about. Feet placement: perfect; balance: perfect; court vision and court sense: perfect. Today, I had to think about all of those things before I did them.

I did show some signs of past glory. I had a one handed back set that went from zone four to nine. As usual with those sets, not only did I fake out the other team, but my team as well. Then I had an open hand dig on a driven ball.

On the home front . . . the parents put a contract down on a house today. It's everything that I hate. It's a gated community, high gabled roof, the street name is the typical manufactured, symbiotic to the name of community, the typical, cookie cutter house. It does have some character to it, but it lacks vision. A house isn't just four walls, a door and windows.

Since no artist of the week last week . . . this week we'll go with Siouxsie and the Banshee's. 'Nuff said.

08 June 2008

The Liberation Has Begun

It's been a rather busy week. My parents have begun their pre-move move. They left Friday in search of their new abode and the transfer for theirs to mine has begun. The man-cave is being renovated which began on Thursday with the delivery of my 52 inch flat screen TV and stand along with the new X-Box on Friday. Before this, I already bought the Blu-ray. One word: WOW.

Yesterday, I had a wedding to attend. The first week in June is usually one of two things: hot or moderate with the weekend just the exact opposite. Yesterday was hotter then hell. Most weddings, guys can dispense with the sport coat and just wear a tie and button down. Needless to say, I was hot. Also, I was over dressed. One guy walked into the church in a Hawaiian shirt and shorts. WTF?

I got to spend some time with two people that I haven't spent time with in a while since my life changed. Add two more people two the list that know. As always, the reactions were wide spread: Oh, that sucks, I'm sorry. The other person is a year away from graduating med school and she didn't have a lot to say other then ask how I dealt with the side affects from the interferon. Sometimes it's just nice to receive that knowing look without having to go through a lengthy explanation. Then there's always that: I have it, but I don't explanation as well.

Anyway, today I was pretty tired and it doesn't have anything to do with the MS. It was just a busy weekend and going to bed late and waking up annoyingly early didn't help. Shots this week went okay. I have a nice bruise on my stomach. Haven't had one of those in a while. If there's anything enjoyable about my injections it's Friday's. Friday's I shoot myself in the leg. Since my left one is the worse one as far as the tingles go, I hardly feel it.

01 June 2008

I Dipped My Toe In And The Water Was Warm . . .

To the masses that are reading this ;-) I haven't written in a couple weeks because there hasn't been a lot to say. The sameness of the days tends to run together and there's nothing new to report. Last weekend my allergies were out of this world. There wasn't a lot going on for the holiday weekend thankfully enough. Last week, much of the same: I worked out and I shot up.

Today, I bucked up the courage and went and played volleyball. As my previous writings revealed, it's difficult knowing how one once played versus how one plays now. They only difference between then and now is that I am just rusty. All the important things are still there, it's just the fine tuning that needs to be worked on.

Now that I've dipped my toe in and the water is fine, it's time to play again.

Artist of the week . . .

Two bands that helped to make CBGB's what it was: The Ramones and Blondie.

19 May 2008

Less is more . . .

Not a lot to write for last week. After my running hurdle that I crossed, I fell off on everything else. Due to the crazy St. Louis weather of having rain at least twice a week, my intention to work out last Tuesday was cut short by the quarter sized hail that started just I was leaving. While the Hummer is solidly built, the roof is just as flimsy as any other car. Driving on the highway in a hailstorm . . . I love my truck more than working out. Then that set the tone for the rest of the week. I wasn't as sore as I thought I was going to be after the run and that was about the only good thing of the week.

I did run again today. It wasn't as bad as last week, save for the spastic muscles in my butt and thigh. But I toughed it out.

Shots I was a big baby. Usually, I do a couple of deep breathes and pull the trigger. Last week I was running a marathon. Stomach didn't hurt so bad, butt . . . not as bad as the previous weeks (I took the shot out the day before) my leg was best of all. Since that is where most of the myelitis is centered, I hardly ever feel it.

Artist of the week . . . Not so much an artist but a genre and all it's sub-genre's.

Paul Oakenfold and when he collaborates . . . Oakenfold, DJ Rap, Iio, Amber, Basement Jaxx, Frankie Knuckles, and the list goes on and on.

Any one reading this is probably going WTF? by now. To the uninitiated it's techno. To those familiar: house, trance, trance-hop, drum and base, and the list goes on and on.

When you lived the club life, it's the music that made you move. Plus, I think it would really cool to be a DJ. Especially when it's late, most of the crowd that is only there to be seen has left, and the DJ goes freestyle.

12 May 2008

Somebody . . . follow me in the ambulance

I held off on writing anything because of what I wanted to do today. The myelitis is always more pronounced while at work. Whether is the sitting or the dress socks that I have to wear, my feet always tingle more at work than any other time. So . . . I planned on sucking up my pride, but mostly my lack of pride and I decided to run.

I don't have anything to prove to anyone other than myself.

At some point you have to get beyond telling yourself that your limited by the cards you have been given, bluff your way into going all in and just doing your best and don't muck the hand. Enough poker metaphors.

To borrow another phrase, this one from "Risky Business" "Sometimes you have to ask yourself What the F**k?"

I didn't have any expectations. How could I? I didn't set any speed records. I'm probably the fastest 35 year old that runs like a 50 year old. After about a quarter of a mile, my feet felt really heavy but I didn't have any of the coordination loss that I had when I was first diagnosed.

The next step. . . sucking up enough courage and playing indoor volleyball again. That's a much harder thing though. It's one thing to tell people you know outside of what your know for about the person you are now. It's something entirely different going back to a game that was your passion and knowing that it's never going to be the same and having to explain to people who have known you for years that the player the knew was dead and that I'm just a regular guy playing a game.

Not that I'm Michael Jordan or anything, but I would be willing to bet that he would give anything to play professional level basketball again. Knowing that he can't, playing anything below that isn't quite the same. There's always something lacking.

Anyway, last week was okay. It would have to be to make me run. One thing to take note of is the shots in my ass have really started to hurt. The first time, I thought it was because I took the shot out late, but last week hurt worse than the first. Damn it.

Artist in this case Band of the Week.


What's there to say about a band that puts out a CD of the brother's doing nothing but arguing? Pick an album and they have awesome songs on it. "What's the Story Morning Glory" is probably the best and it was so good that it produced two separate releases of the B - Sides and some of them should have been on the original album. MTV Unplugged had some great performances and Oasis, well, Noel had one of the best performances.

04 May 2008

Titles? Who needs them.

Not much in a writing mood today. The creative juices for a pithy title aren't flowing.

Not much happened last week. No news is good news. I was sore for a couple days after my new venture into volleyball. It was a good pain though. I worked out three times during the week. I took Friday off of work and lifted heavy for my upper body on Friday. Saturday, I had the deep muscle pain. I also played volleyball again for a couple hours. I even managed to run around and sprint without the decrease co-ordination that was usually associated with the myelitis. I may even try to run sometime this week. My three shots went fine as well. I didn't have the usually morning aches on Tuesday. That's been hit and miss for the last month or so.

I also saw some people that I haven't seen in a while. They told me they did the MS Walk because of me. Flattering and I said think you, but it's always an emotional rollercoaster when I get told that. It just sends my mind swimming. On one level, I am still trying to wrap my head around all of this. What is life going to hold for me? Am I ever going to present with recognizable symptoms? What happens if and when I ever do? What damage is going to be done?

Then, the objective, logical, and cynical portion of my brain kicks in. The MS Walks and rides are supposed to raise money for research. As with all things when there's a "National" involved . . . how much of that money goes towards administration costs and how much goes for actual research. With some charity organizations, it's absurd how much goes towards administrative costs and how little gets to the people who really need it.

I'm not naive enough to believe that there will be a cure in my life. There very well may be a cure, but believing in it is probably a false hope. How many auto-immune diseases are out there that are "controlable and managable" and how many are cureable. If anything, a cure probably isn't in a drug. As with all things, it will probably start at the genetic level and changing some gene that tells the body to stop attacking itself. It's only been 10 years or so since the Human Genome Project was completed.

Music Artist of the Week: Ryan Adams

Pop, folk, country.

"Love is Hell" is probably my favorite album. It has an excellent cover of "Wonderwall" and "Avalanche" is excellent and has been in a ton of movies. For One Tree Hill fans . . . Haley and Chis Keller covered "When the Stars go Blue." I like the Ryan Adams version better.

28 April 2008


In my haste yesterday, I forgot to add something that I wanted to start. Since music is so expressive, can capture a mood, a feeling. I thought I would do my artist of the week. So to speak. Can't say how long it will last but my tastes range far and wide.

This week . . . Leonard Cohen.

Been around for fourty years, but I think his songs are timeless. Three favorate come to mind: Hallelujah, If It Be Your Will, Everybody Knows. Hallelujah has been covered quite a bit, but Jeff Buckley certainly had the best version. It's been featured in movies and TV the last few years. Jason Castro did it this year on American Idol.

The last two were in Pump Up the Volume. Including a cover version of Everybody Knows by Concrete Blonde. Both are equally good in their own respects.

27 April 2008

"Maybe It's Just in Your Mind" - A Working Title

Today I am sore.

I know mind over matter is a big thing. Having a positive mental attitude can't keep depression away, but it can make have less of an impact. How does that apply to the physical? Is it possible for a person that is paralyzed to be able to learn to walk again? Of course it is. It happens all the time. I've known a quadraplegic game some use and motor function.

How does that all apply to myself. I've had myelitis for over a year and it's only been since last August since it got bad. Before the steroids and solumedrol any activity just made it worse. Coordination went out the window, physical prowess dropped to close to zero. I thought I was going to not be able to do anything but work out. Not entirely a bad thing, but for someone that would play soccer, tennis, and volleyball all in the same day, it's certainly a change in lifestyle.

Yesterday I played volleyball for about four hours. Two of which wasn't really serious and the other two not quit competative. Aside from a lot of rust, it wasn't bad at all. It didn't seem like I had a loss of speed or coordination or its that my body has just gotten used to what I have to deal with or both. Memory tells you how you used to play but your body forgets. Working out certainly helps, but playing volleyball for so long, my muscle memory is set in its ways.

Afterwards was a little rough. Either the numbness/tingling really makes my feet hurt because of the pounding or I need new shoes. The knees were a little tired. Today I sore, but not as sore as I thought I was going to be.

The rest of last week was just a normal as a week should have been. Three shots, one of which hurt like hell. Forgot to take it of the refrigerator, so it was only out about 15 minutes and I held in my hand for another 10. It hurt enough for me to say "OW" aloud.

19 April 2008

Apathy . . . Ah . . . Who cares.

Yes . . . It's been two weeks since I've written anything about what has been going on. Frankly, as the title suggests, I just really haven't cared to do much of anything. I haven't really worked out in a couple weeks. I changed my workout schedule and it didn't really work. There doesn't seem to be a lot of people who go to the gym that I belong to. Monday is always the busiest day. It' funny that people think going to the gym is going to fix what they did over the weekend. Anyway, I used to go Tuesday, Wednesday, Saturday and Sunday. For some reason I kept Saturday and Sunday but changed to Wednesday and Thursday.

Bad idea.

Turns out that I need to get off my ass at the beginning of the week or by the time Wednesday rolls around, I have no motivation to do anything. Last week, I wasn't really motivated to do much of anything. I had every intention of working out on Wednesday, had my truck parked out in front and then came up with every excuse why I wasn't going to go.


I get easily annoyed with blatant stupidity. Understandably, certain situations are excusable. Yesterday, St. Louis was jolted with a 5.2 strength earthquake at 4:37 in the morning. Granted everyone that was aware of was woken up by it. This has been the strongest quake in about 30 years. Granted peoples memories are pretty short, but that doesn't excuse blatant stupidity.

All the earthquakes that have happened in my life, I was either on the road or asleep. This one, I think either my internal warning alarm went off or the the initial shaking woke me up. First thought was that since a rail line is close by, it was a damn heavy train. Except my bed wasn't rattling or vibrating, it was actually moving back and forth. Just to confirm, I turned off my air purifier and didn't hear a train. In typical guy fashion, if it wasn't a train, it had to be an earthquake. I rolled over and tried to go back to sleep. After about 15 seconds of shaking, it still wasn't over. So I took a pillow put it over my head in case the ceiling fell and did go back to sleep.

Of course, the only topic of conversation at work was the earthquake. Enter the dance of the stupid people. "I didn't know what it was, " "I thought it was the wind," "I thought a truck was passing by," "I didn't find out it was an earthquake until I saw the news."

It just amazes me how people don't use that gray mass of mush under their hair and have to rely on being spoon fed information. I am not the most intellectual of people when I first wake up and especially when it's a sudden wake up, but if I can put 2 & 2 together. . .

There was an MS Walk last weekend and one of the people I work with was kind enough to bring me a care package. Actually, it was what was given out to everyone that walked. Funny enough, it's all stuff from the drug company that makes Rebif, which is what I take. Included was a small backpack with Rebif on it, a bright yellow t-shirt with Rebif on it, a yellow neck cooler with Rebif on it, then pamphlets on how the drug company assists those how have trouble paying the outrageous cost of the drug.

Nothing like free advertising and nothing like advertising you or someone you know has MS. Yes, I am being cynical again.

There's really nothing new to report. The myelitis changes every day and as usual, no signs of MS.

07 April 2008

Philosophy 201?

Time for a bit of philosophy since I haven't waxed poetically in a while. Some thoughts came to me and they were those thoughts that only come late at night.

What defines us?

Is it our actions? or is what we say? or is it both.

What defines you?

A previous entry made use of the word hypocrite. Saying one thing and doing the opposite.

Actions or words?

For most of us, actions are both a public and private thing. But it's such a duplicitous thing because the same act in public can mean the complete opposite in private. Words on the other hand are just the opposite: mostly private sometimes public.

Is it words or is it actions?

Dichotomy - a division or the process of dividing into two especially mutually exclusive or contradictory groups or entities

What's the difference between public and private perception? Does it matter? What's worse: the things we do in public or our actions in private. I think that we delude ourselves with the deceptions that we create in our own lives. When we let people in, they get to know us sometimes the very perceptive know us better than ourselves. In poker, it's called a tell. We are creatures of habit, but back to the question at hand . . .

Actions or words?

I have always thought that "Actions speak louder than words" is half true. Actions: public; words: private. I think the two go hand in hand. I can talk out my ass, but unless I back it up, the words are empty. Words are important, words have meaning.

Enter Dichotomy again.

Think of the feelings evoked when someone says "I love you." How much meaning do those words carry after the the hundredth time, the two hundredth? At some point do we want those words to be backed up by actions? Does love come with a price tag? or is it just the simpleness of an act.

Let not the marriage of true minds
Admit impediments. Love is not love
Which alters when it alteration finds
Or bends with the remover to remove.
O no, it is an ever-fixed mark
That looks on tempests and is never shaken.


She walks in beauty, like the night
Of cloudless climes and starry skies;
And all that 's best of dark and bright
Meet in her aspect and her eyes . . .

Are those words that were penned 400 or 200 years ago carry any less weight than a flower given unexpectedly?

Actions or Words?

There are a ton of platitudes for actions and words. Are there any for both? I have always thought if I give my word and fail to back it up what use are my words or lack of action? If you say you are going to do something and then don't do it, how many times are people going to put their trust in you. You can only treat people like a doormat for so often before they aren't going to take it. Unfortunately, people don't like to admit their mistakes. It's always the fault of someone else," you've changed, you just don't see it."

Do we consider ourselves to be a just and moral person? Do we do what is right or do we do what is right now?

Actions or Words?

05 April 2008

"One small step for Steve . . ."

This past week has been kind of up and down. We've tried this thing at work for the last 18 months that just hasn't work. Probably with all things "corporate" and hierarchical command structures I can make a blanket statement because it probably accurate. We can all watch "Office Space" and find someone we can identify with or something.

With any problem that's "corporate" a group is organized to study the problem and come up with solutions. When that isn't working, another group is started to study the group to find out why they aren't coming up with solutions. In the meantime, another group is started to study the original problem. By this time, the original problem has grown beyond the grasps of those studying the problem and taken on a life of its own. Instead of analyzing what is going on, the powers that be decide that just solve the problem by destroying that which created the problem and coming up with an entire new way. Instead of studying this new way before putting it into action, it's the ol' jump right in method. Which creates a new set of problems which takes us back to the beginning when all these new problems crop up.

When this new system was put into place, it was evident from early on that we had to few people and to much work. Fast forward to now where two teams are fully staffed and the team that I am on is still the same five people. Now add to the mix that all overtime now has to be approved. This lead to a meeting where we were told our processes are not working and we need to change. Big F'ing surprise. I've been saying that for 18 months to know avail.

Now on to the rest of the week. Shots went good. Monday's were typical, Tuesday's achy. Surprising, Wednesday was as well. Friday, I hit a vein and the thing wouldn't stop bleeding. Mangina that I didn't want to be, put on a band aid, then mangina that I really didn't want to be had to rip it off and the multitude of leg hair came with it. Those from my past would have been proud of how many hairs they could have ripped with it. ;-)

I also touch a volleyball for the first time since August. I really had my doubts and still have them. I had been on my feet since 1:00 today. Usually, when I am on my feet for that long, the myelitis really flares up. I did manage to sit down for about 60 minutes before playing and it did help. I wasn't so worried about getting to the ball. I already know that my mobility isn't going to be what it was. Age wise, I may soon to be 36, but I'm probably 50. The thing that scares me the most is hitting. If you can't jump, what's the point of playing a sport where it's a requirement.

With any athlete, there's a double edge sword: if you leave at the top of your game, there's always the question of what might have been; if you leave on the downward spiral, you are always trying to regain what you had and that's not going to happen and people say you should have left earlier.

I know that I haven't been at the top of my game for a while. A volleyball player's prime is between 26 - 28. Looking back on it, mine was between 27 - 30. I won the most tourney's then than all the previous years added up together. I've slowly stepped away from the game and I did it on my terms until this. The sport that's in my heart has been denied to me. I think the hardest thing for an athlete is not to leave on their own terms.

I know I can still play after today, but no where near where I used to be. The question is do I discover a new me in volleyball and erase the memory of what used to be or walk away completely.

31 March 2008

The March of Time

I took last week off from doing anything. With my knee, I didn't want to work and then I woke up in such a bad mood on Monday I need to take a day off. Things being what they are when you work for the man, you have to request a day off 48 hours in advance. No big deal, I hate taking days off in the middle of the week, so Friday. Check the book and damned if someone hadn't already taken the day on my team. No day off for Steve. After a string of cuss words, I suck it up and take the next Friday off. The rest of the week sucked ass. If I could have put it on fast forward, I would have, or a few shots of tequila.

Friday comes and goes and then it's the weekend. After last Friday's fun cut short, staying out late is just about over. Which, BTW, was cut short anyway by the county cops. Saturday, I went to a birthday party for my friends one year old. Brooklyn is a miracle baby of sorts. Her due date was supposed to be my birthday, but she had to be delivered about 100 days early. Surprises of all surprises, her doctors let her go home early. With premature babies, they usually stay in until their due date. She came home the week before Memorial Day. She was all of 5 pounds.

She seems to be a healthy happy baby. When I saw her a month ago, she was a typical baby: you lay her down and she stays there. Four weeks later, if you sit her up, she won't do a face plant, she can't crawl but she can push herself backwards. Entertainment of all entertainment, she got an un-iced chocolate cake to tear apart. Chocolate cake all over the place including her face. It was good to see childlike innocence again.

Sunday I spent the day lounging.

Myelitis . . . same, MS still the same. Shots . . . Monday was okay, with the delayed flu. Wednesday okay again, with delayed flu, which was a little unusual. Friday . . . hurt like hell, no flu.

22 March 2008

Happy Easter

Not much to report this week. Myelitis was okay. No really major flare ups. I did my usual four workouts this week and I think I tore something in my knee on Thursday. "And the hits just keep on coming . . . " I don't know how much the sled weighs on the leg press, but I have been easily pressing 270 pounds of weight fairly easily. When I went on Thursday, there was already 270 on plus an additional 50. What's 50 pounds when it comes to the legs? On the third rep, a nice sharp pain behind my left knee. Took 140 pound off and kept going. Now it's just stiff and crunches every now and then. Not good.

Shots went well this week. I had a birthday party to go to last night. Throw in trivia and beer pong and it makes for a fun night. It's nice that my friends look out for me, because I got to drink one beer. Everything past that, nobody would let me drink. Shot nights and staying out late are not a good combination. About 11:00 the mild headache started and about 11:30 started the joint pain. I tried to hold on, but all I wanted to do was take some drugs and go to bed. When 12:00 came around, I had to go.

Such a drastic change from that former life I had. Stay out until 3 in the morning, go home, sleep for three hours, get up, play volleybal all day, get dinner, go home sleep for an couple hours get up and stay out until 3 in the morning again. Every Weekend.

"How the mighty have fallen"

15 March 2008

No News is Good News

Not much going on this week. My myelitis flare up continued on through till the end of the week. The neuro's office called on Tuesday and my blood test results all came back normal. Not that I was all that worried about it. Since the office I work in is a germ factory and a virus and upper respiratory bug hit almost everyone and skipped over me, I didn't think my white cell count when down.

My arm from the stick for the blood test is still a lovely shade of purple. Earlier in the week, it was just about every color of the rainbow. I worked out 4 times this week which is about what I normally do. Last Saturday was a max lift for my upper body. Which, sad to say, was what I was doing two years ago. As a result, everything was tired when I lifted again on Tuesday. But today, I had more endurance.

All in all, it was a quite week.

08 March 2008

National MS Awareness Week

Monday starts National MS Awareness Week. Enter cynicism.

Why do we need just a week? Those of us that have been diagnosed are certainly aware of it every day. Or is this a week to make people that don't have MS aware? What is being aware. Telling people that you have it, does that make them aware? Knowing someone that has it, does that make them aware? In the age of feelings, we have "Awareness" weeks, but what is the purpose?

Yesterday was my 6 month check up at the neurologist. Not much to report. I'm not going to have another round of steroids for the myelitis. I really didn't think I would, but one could always hope. It was basically another interview.

Q. How did you react to the Rebif?
A. Fine, January sucked since I started the full dose. The side affects were controlled by ibuprofen. I had some mood swings, but they went away.

Q. Notice any physical changes? Ever have days where you were exhausted for no reason?
A. Haven't notice anything really. I have energy, just lack of motivation. Winter's not my best time of year. I'm working out again after pulling a muscle in my back.

She did mention a couple things on the horizon. There could be a couple of new drugs in the next two to three years that are in pill form. Also a "new and improved" form of injectibles in the same time as well. They are starting human trials shortly. Hit the National MS web site at http://www.nationalmssociety.org/index.aspx for details.

After about 10 minutes we were done. Told me to come back in 6 months, call her if anything changes or I had questions and go to the lab and have your blood test to check you red and white blood cell count and your liver function. The nurse took two vials of blood and I left knowing I would have a nice bruise in the morning.

I woke up this morning with the worst flare up of the myelitis since the second round of steroids. It's gotten better since the day has progressed. It also brought something else to mind. If there's anyone reading this that knows, let me know.

My employer has instituted mandatory random drug testing. Wednesday was my lucky day. As always when these things happen, they came and got me right after I came back from the bathroom. Fortunately, the myelitis wasn't bad last week and 48 ounces of water and an hour or so later I was done.

The way these things go, an individual has 3 hours from the time they report to fill the cup. If they can't a doctor is called for a medical reason. Obviously I have two dead fire reasons why I may not be able to provide a sample. There's were days that as much as I tried, nothing would flow, for hours. No matter how full my bladder was. There's nothing that hampers performance more than frustration.

If there's anyone out there that's run into a problem, please share. I imagine that if it ever became a problem, I could always throw ADA at them and see where that gets me.

04 March 2008

"Taking The Sleigh For a Ride . . ."

For those unfamiliar with Saint Louis weather, it can turn on a dime. This weekend was awesome. Saturday it was in the mid 60's and Sunday was in the mid 70's. March was entering like a lamb only to be eaten by the lion. Monday . . . Ice. Tuesday 10+ inches of snow in about 5 hours.

Needless-to-say, traffic was a little insane. The main roads were a parking lot and the highways were a nightmare. At one point, MODOT wanted to close the highways due to so many accidents. With the accidents, they couldn't really plow the roads. Thankfully, none of that mattered to me.

I have what someone called an alpha male vehicle: 2008 Hummer H3 Alpha. During Christmas there was a Hummer commercial that showed a top down view of a Hummer zipping through the snow and the only caption was "Taking The Sleigh For a Ride." I took the highway home and out of 4 lanes, two or three had cars on them, so I made my own lane. It was awesome. It only took me 15 minutes longer than normal.

With the warm weather came activity. I was tapped to help a friend finish out his basement. Taking advantage of the weather, we peppered the volleyball around. It was the first time I touched a volleyball since September. It wasn't the best but it wasn't like it was the last time. The myelitis is still affecting my reaction time, my coordination was better, jumping though . . . lacking.

Last post I said I had a check up with my neurologist that would have been yesterday. Guy gene kicked in and the appointment wasn't yesterday. I didn't get the reminder call all of last week and for the life of me couldn't figure out why. After there was no call on Friday, I decided to check the appointment card. This Friday.

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.

31 January 2008

Crisis Averted

Update on the Rebif. . .

Monday is always a busy day at work so I didn't get a chance to call the pharmacy. Tueday I did. Some how, some way, they gave me the wrong fax number. Called the doctor's office for the third time. "Didn't we already fax this twice?"

Less than 24 hours later, the pharmacy was calling to arrange shipment and I got it today. 3 months worth. With a little added bonus. Something to make you feel your insurance company is working for you. The first time, the pharmacy just sent me a bill for $90. This time it was chocked full of information. It was like a Mastercard commercial:

Market Price: $6,800
Our Price: $5,300
Your Price: $150
We saved you $5,150
Knowing that your semi-protected from any future flare-ups: We'll bill you!!!

Overall, I missed one shot and delayed another 24 hours. It still hurts like hell. My six day vacation is over. It's not back to the waiting game of "if and when." It's just that every other day reminder when I have to give myself a shot.

26 January 2008

..|.. Part 2

One last ditch effort in order to get another supply of injections before I officially go off my meds as of Monday. Knowing bureaucracy, I called the new insurance company pharmacy to see if they got the script fax from the doctor's office. Nope, was the answer. I called the doctor's office and they faxed it on Thursday and would fax it again on Friday. In one last ditch effort, I called the old pharmacy to see if I could get it at cost. After a 3 minute hold wait, I was told yes, you could have a one months supply for $2,200. There it was . . . The choice to go without for a week or pay out a couple grand for peace of mind. I decided to go without.

Frankly, it will be a relief to go without the bruising, the flu, the intense headaches. Then I was struck with another thought. It's cheaper to treat a flare up of MS then it is for the semi/pseudo preventative. From what I understand a flare up is treated with Solumedrol/prednisone. With insurance, I paid $10 for the steroids and for the nurse visit and IV's $34. I know interferon has to cultivated and extracted and formulated, but $2,200 for 12 syringes?

This next part will probably tick a lot of people off. My little blow up over insurance got some people talking: Steve just doesn't understand, he doesn't know what it's like to pay more for insurance and get less. The next thing is "It needs to be fixed . . . " It got me to thinking. First off, I don't think most people can argue an issue like this without it being a personal thing. In order to do so, you have to be logical, knowledgeable, and dispassionate. The next thing is are you a bottom up thinker or a top down thinker?

To me, if your a bottom up thinker, in this situation, you argue how to make the situation better for yourself. Easiest answer is that the government needs to step in. If you're a top down thinker, you argue on how to make the situation better for everyone. You try to fix what's wrong with the entire system. I'm not going to get on a soap box and say this or that needs to be done. There's no right answer because there are no answers. I don't think socialized medicine is the answer and there are to many variables to try and fix they system.

What do you do? You make a choice: $2,200 or the greater chance for a flare up and $50 for steroids.

24 January 2008


That's my weak attempt at the cyber finger.

Hadn't heard from the pharmacy all week so I called today. Gave them my usual information, then "Can I put you on hold?" Oh hell. A minute later, they tell me something that they should have told me earlier in the week. Evidently, with specialty drugs, the insurance companies use one specialty pharmacy. My new insurance company isn't compatible with the old pharmacy. Talk about a cluster/SNAFU/FUBAR. It is just unbelievable to me that I had to call to find this information out and then run around with my hair on fire.

After I got off the phone with the old pharmacy, made a call to new insurance company. One phone call got redirected into another one. "Sure we can help you." I had to get pre-registered with the pharmacy, told to expect a phone call in the next 48 hours to fully register, in the meantime, call your doctor and get them to fax the script in.

Enter Act II for the drama of the day . . . the over worried/over protective parents who have asked every day this week if I've heard from the pharmacy never heard a word I said last week. "Your drugs didn't show up today." Which was totally contrary to what I said last week: "Call Thursday if you don't hear from us." Explained what happened, kept getting more and more angry with every question. All of a sudden I'm being defensive and I'm a liar. I lost it.

The blow up that was gradually building up since all of this started finally boiled over. The thing that separates my friends from my parents is that my friends don't treat me any differently than before. My parents treat me like I'm soda glass and the littlest thing will break me. If I sneeze it creates havoc. I don't want people to ask how I'm doing, I'll tell you. You want to ask about MS, I'll tell you. You wanna know how I'm dealing with MS . . . couldn't tell you. Aside from the myelitis, that's the closest I've come to any similar symptoms.

There is a man at work that is in a wheelchair from MS. He's had it for 15 years. Gradually started out like everyone else, I imagine. I've only known him for about 4 years. He used to walk with a cane. On his bad days he had a wheelchair. Gradually he became worse and worse. I would have to help him out of his car because he wasn't strong enough to push his upper body up. On his bad days, myself and another person would have to cradle lift him up into a chair. He tired out easily and his muscle endurance was next to nothing.

I look at him and I am so far from where he is now or even where he was when I first knew him. I can't even compare.

After today, I just want to give the world the finger.

22 January 2008

"A back, a back, my kingdom for a back"

There's something to be said for my limberness that I can put my socks on while laying on my back. Actually, that's the only way I can put my socks on. Back still hurts, but getting better. It's been bad for 15 years, some times when it goes out, it is bad, others worse, sometimes not bad at all. It's something I've just gotten used to. It hurts sometimes.

I think I'm running into insurance problems that people with MS run into. I decided on Rebif on a Friday, by the next Saturday, the mail order pharmacy was calling to set up a delivery. 1 January 2008, my employer changed insurance providers. Hindsight and all, I should have called earlier, but I called for my refill last Tuesday and gave my new insurance card. Friday . . . still haven't heard anything. Call . . . insurance still hasn't signed off on script. "We'll put a rush order on with the insurance company. Call us Thursday if you haven't heard anything." I run out this Friday.

This is where that strange dichotomy that is my MS comes in: Haven't presented with any symptoms yet I am on an outrageously expensive drug to help prevent any future outbreaks. Want to know how much of a crutch a drug is that hurts like hell to inject is when you are facing not having it. In 99% of my mind it's not that big a deal. I was diagnosed on 10/2 and didn't start injecting until 12/3. If I was under that much risk, I believe the neurologist would have forgone the steroids for the myelitis and started right with the Rebif. Nevertheless, it is still a concern. On the flip side, I'm hoping for one more round of steroids and maybe this time, the myelitis will totally go away or reduce to such a degree that I can actually play volleyball again. If that happens, I go off the Rebif anyway.

Oh ya, last nights shot . . . took my breath away it hurt so bad.

20 January 2008

Do Nothing Sunday

Backs still out. Better, but still out.

Catch .22. Book to some, just a phrase to others. All it means is a choice between two equally unattractive choices. The myelitis is set off with heat. With every shower or bath, boom . . . more tingles. What helps my bad back when it's like this: heat. Since I really can't do anything today, it's an even trade off.

Today has given me time to philosophize which I haven't done in a while. I was thinking about searching. We are searching, the difference is for what. I think that if we know ourselves, our path is clear. Our goals are defined. What happens if we know ourselves, yet deny who we are. What happens when you have everything that you've ever wanted right in front of you, yet you accept it for what it is, forget what it took to get it, and seek out the next great thing.

I think it's an empty life. You're always looking for something to fill the emptiness, yet whatever it is, you feel it is never enough. When in actuality, it's more than you could have ever wanted. You're always sacrificing what you have for the great unknown. The thrill is in the hunt and when the hunt is over, it's time to move on to the next hunt. And the next. And the next.

The thought for the day is: Before moving on and denying what you have for the next thing you feel you're missing, look inside yourself and ask if this is replacing, filling, or is the search the true representation of what you are.

19 January 2008

I am in . . .

Hell. Because of the myelitis, the only exercise I can do is work out. When volleyball was my life, I worked out to improve my game. As I got older, I worked out to keep what game I had. Now, I work out to preserve what strength that I have and to keep fit in case that day comes when I have an flare up and the MS presents itself.

Every day is different and presents varying degrees of how I feel. Tuesday was back to working out. Leg day. Wednesday another injection and working the arms. I felt pretty good. Usually, once every two weeks I try to go heavy. Since I felt good today, I did a combination: medium weights with step ups and step downs. I figured that the muscle pain I was to endure the next day would help mask the flu induced by the shot. Great plan I said to myself.

Thursday . . . muscle pain and I felt good when I woke up. Except for an hour later when the flu kicked in. Two pills and an hour after that, back to normal. Except for the muscle that I seemed to have pulled in my back that threw it out again.

Dante needed to add another level of hell in "Paradise Lost" because the combination of a thrown back and myelitis is a one that truly should be missed. For those that may be reading this that don't know the feeling of either, imagine the feeling after the pain recedes from hitting your funny bone and all that remains is the tingling all through your arm. I have that from the toes on my left foot all the way up to my rib cage. I have it 24/7. Now, add the pulled muscle in my lower back that pulls my spine out of alignment. Oh, did I mention that even below the layer of fat I have on my stomach, my abs are still strong. They want to compensate for the pulled muscle and clench and pull themselves.

It is my life and something that I've gotten used to.

15 January 2008

Another Day, Another Injection

Not much to report. I felt better Sunday, but was so drained from Saturday, I really didn't feel like doing anything Yesterday was pure hell. I was back to feeling bad. I still had the headache that started Friday night. I didn't sleep well either. The myelitis was making my feet burn. All day I was dreading that syringe awaiting me when I got home. If I felt this bad after almost three days, what was another dose going to do to me?

Surprising enough, I felt better after the shot. The shot itself, still hurts like a mother. I iced up the site for 10 minutes and it still burned going in. My problem is I don't have enough injectionable fat. I was an athlete and still consider myself one. The only fat I have is on my backside and my waistline. Everything else is solid muscle.

Anyway, today, I had the usual joint pain and the "my skin hurts to touch" usual flu feeling. After a couple ibuprofen, I was back to normal. It was just another day, another injection.

12 January 2008

9 January - 12 January

I haven't written in a few days because there hasn't been a lot to write about. I didn't work out again until Thursday because I was to sore from the weekend. The thing about myelitis is I can't quit figure out if it makes the muscle pain better or worse.

I've shot myself up twice. I think I pretty much sleep through the worst of the side affects. I shoot up at 5:30, by 9:30 I start getting a low grade headache. Two ibuprofen takes care of it. I wake up and I don't feel bad, but I don't feel good either. The day after the shot is a tiring day. People say the notice I go through some mood swings on Tuesdays and Thursdays. I don't notice it, but if people do, maybe it's true.

Yesterday's shot made me feel absolutely horrible today. Maybe it's me, but it seems that sometimes Saturday's are a culmination of the entire week. The days after the shot during the week aren't so bad. Most Saturday's though . . . I woke with that usual feeling the day after and then it just got worse: headache all day, sick to my stomach, and just a general feeling of blah.

Sleep will be welcome relief after today.

08 January 2008

Sleep . . . We don't need no stinking sleep

Not a lot to write today. No site reaction to the shot and felt just a little bad, but that could be because it's the second night that I consistently woke up every two hours. We had a huge storm system that came in . . . thunder, lightening, everything that usually makes me sleep. But not used to it in January.

I kinda lost it at work today. We changed insurance carriers at the beginning of the year. It has it's positives and negatives. Of course nobody ever mentions the positives. Everybody was bitching about their prescriptions and how much they cost now compared to before. I couldn't take anymore, lack of sleep certainly helped. "you people have nothing on me. Every other day, I'm injecting $125. Without insurance, my drug cost would be about $16,000 a year. Now tell me about your problems."

I know people talk to hear themselves talk and it's always easier to complain than compliment, but I tell ya. It kinda shut people up, though. Nothing like shock value to shut people up.

07 January 2008

Par for the course

Monday's are really busy at work. It's just the nature of the business. One of the unattractive things about transverse myelitis and MS is how much of an affect it has on the things that come natural. One of the first symptoms of the myelitis was that I had trouble urinating. See, not attractive. At first I thought it was prostate problems. Today, I had a big glass or orange juice, three 16 oz glasses of water and a pop. By three o'clock, I realized that "Hey . . ." A full bladder and no sensation. Welcome to a day in the life.

Monday's are also another day: shoot myself in the abs day. Iced up the site, alcohol swab, let dry, place Rebiject against skin, apply pressure, push button and then Owwwww. It's tough for me to find places to inject myself. Even though cardio wise, not so much in shape, the rest of me though, rock hard. Except for my stomach. Age certainly does show. I used to have a six pack with side handles, then just a six pack, then a four pack, two pack and then my flat, washboard stomach became and outie. It is what it is.

The January thaw comes a little early this year. It's been a April around here the last couple of days. Even with the cloudy weather, it was nice to have the windows down and the sunroof open. Sometimes the simple things are nice.

06 January 2008

Does a title really matter?

Not really waxing philosophical today. I did a leg workout and did a cardio afterwards. Cardio was probably a mistake. It was warm in the fitness center and I probably did to much. I've done nothing but sit on my butt for the last month. For those who think volleyball is a picnic game it's not. It's a game of going from a complete stop to a burst of speed. The correct term is anaerobic. You have to have good aerobic fitness to have good anaerobic fitness. The mind remembers what the body used to be able to do. The body, on the other hand, fights against the mind. Muscle memory is forgotten. Add MS and myelitis to the picture. There is no such thing as what I used to do, it's "what can I do today." I went a little hard today. I was sucking air on an elliptical machine and gave myself a terrible headache. It bordered between a brain freeze and a migraine.

I wanted to take the time to thank the person that decided to comment on my post from yesterday. I didn't know if anyone was reading and frankly, not expecting one after only 8 posts. I've played volleyball for 17 years. There's not much that I haven't done in the sport. I learned the game on my own and had and have a genuine love for the game. In the last few years, when the kids that I coached could beat the coach and it got harder and harder to make it through the day, age was telling me something. What really killed it was the cliques. That's a novel in itself. I've been moving farther from the game for the last couple of years.

Had this happened four or five years ago when I was at the peak of "career" I would have been devastated. As it is, while my time away from volleyball has been greater and greater, it sucks that I just can't go play. Nevertheless, I do realize I am on a journey:physically, mentally, emotionally, spiritually and every other "ly" that could be thought of. I know that there are things I can do and not a lot that I can't. It's just the things I used to excel at are a struggle. I realize that, but tell that to the competitor in me.

A lot has changed for me and everyday is new and different and I am fine with that.

Does a title really matter?

05 January 2008

Could it really be that simple?

I moved my injection time up yesterday. I started getting the same type of headache that I did Monday. When I woke up though, no flu. Every once in a while I'll do an MS search. Consequently, that's how this blog got started. I read someones blog and thought "What the hell?"

Searching more through that blog, there was a link to someones web page that takes the pragmatic view of MS. I read it and it wasn't the "everything is coming up roses" that we are so used to getting. I use "we" because I don't know what else to refer to myself as. I have no active lesions and the scar tissue from the ones I did have are old. The myelitis is the only thing I have going on. More on that later.

The theory is that MS is auto-immune and on this web page, I have to give the guy props because he did his research, back tracked through his life to a potential cause. Transverse myelitis can be caused by an infection and so MS might also. Something triggers the body to go into overload and attack itself. I immediately thought of two things: I had the chicken pox when I was 15 and when I was 18 or so I went off in the woods and had so many chigger bites that my lymph nodes swelled up. That's when I thought to myself: Could it really be that simple?

I haven't mention the myelitis in a while. It's always with me. My grandfather used to say that he brought his friend with him: "Arthur, Arthur Itis." Athritis. I kinda feel the same way. Before I went to the doctor, balance was an issue and so was coordination. Being an athlete, I was excellent at both. I had a 30 inch vertical jump. I doubt I could have jumped four inches let alone keep my balance when I came down. I could run forever and now I couldn't run 100 feet.

The first round of steroids did nothing. It was 10 days of 4 pills at 20 mg and then 3 for 3, 2 for 3, and 1 for 3. The 10 days did wonders. Everyday was different and better. By the second day of taking 3 pills, it didn't matter any more. It was coming back. By the time I was down to 1 pill, it wasn't making any difference.

After my next visit to the neurologist, taking care of the myelitis was more important than the MS. No activity . . . worry about it later. This time 5 days of Solumedrol followed by 5 days of 4 pills, 5 days of 3, 5 of 2, and 5 of 1.

Walking around with an IV line in, washing the line with saline and heprine certainly raised some eyebrows when I was at work. Some people know of the MS, most don't. Of course questions were asked. I had an easy answer. The Solumedrol certainly helped and the rest of the pills certainly did, but it didn't and still hasn't gone away. Everyday is different.

Over Christmas, it felt like it was coming back full force. "Will I never be rid of this? Is this what life holds for me? Will I ever have my old life back?" All of a sudden it changed and was almost tolerable. Last Sunday, I almost thought I could go play volleyball. Running up the stairs though, kinda changed that. It felt like there were bands around my knees. Hard to run, plant, bend knees, push, and lift yourself up when your knees don't work.

I haven't worked out since I started shooting up. Whenever I would work out, the tingling would get worse, the vision in my right eye would get all milky, just not a good feeling. If volleyball has taught me anything is to fight through the pain. I've had a dislocated pinkie, endless sprained ankles and a partially torn MCL. What's a little tingle and numbness?

I worked out tonight for the first time in a month. Maybe the interferon is helping the myelitis or maybe it is just hopeful thinking and there's more to my MS. While always there, the tingles didn't get as pronounced and the vision thing was almost non-existent. I didn't do any cardio though and that's when things would get fun.

04 January 2008

Friend ends with End

On the MS watch. Monday/Tuesday was no joke. Thursday I felt like I got hit by a truck. It's been a while since I've had the flu but Thursday morning was a good reminder. Headache, back ache, sore joints and that general feeling that I feel like crap. Two ibuprofen and an hour later the aches and pains were gone and an hour after that back to normal. Tonight I shrugged off the cult of manliness, iced up the injection site, pulled the trigger and didn't even feel it. ;-)

Do people realize what comes out of their mouth and realize that their actions totally go against what they just said. I think that's called being a hypocrite. Webster's defines hypocrite as "a person who acts in contradiction to his or her stated beliefs or feelings." The saying is actions speak louder than words which is true. But words mean things. Thoughts and ideas span over time and can not die.

In this digital age of emails, text messages, and even this blog . . . do these words mean anything? Do they make a difference? Or are they just empty and hollow? Those stated thoughts and ideas expressed and denied, contradicted and so many others.

What defines a person today? How do they define themselves? How do others?

02 January 2008

Thank You Sir, May I Have Enother

Definately a hot poker. This time, where I shot myself, add a jackhammer on top off it. I told another person I had MS today. She, like everyone else, even myself, asked "What is it?" Strangely enough, she said she knew two other people that had been diagnosed. Living in New York City, and both individuals were women, it's statistically possible. Not that it's a lucky thing, but how does one person now know three people and I don't know any?

Vacation over . . . back to work. That place we go on a daily basis. But to what end? We all work because we have to. We have bills to pay, we have a lifestyle that we must support, a family to support. But does it mean anything? Do we make a difference? Does any one really see what we do?

How many sayings come to mind? The sqeaky wheel gets the grease, a raised nail gets the hammer . . . and so many others. I say: Dare to be Different. Never be conformist.

01 January 2008

Later that same day . . .

The day started at 11:43. I woke up with the same splitting headache that I fell asleep with. If I have a headache that bad, I should have at least drank enough alcohol to warrant it. Anyway, I stayed in bed till until I had to cook dinner. I was actually feeling better. Still felt like I had a hangover.

Tomorrow . . . Back to work. Back to all the simplistic people and their petty lives. Back to the questions of "How was your vacation?" I have a one word answer for them: Cathartic.

Happy New Year

2007 is over and good riddance. In a year that was filled with pluses and minuses, it certainly wasn't a good year. I lost two relatives and because of the MS, I killed a part of myself off but was reborn into someone else. That's part of the territory.

I've been on vacation since Christmas Eve. Out of those days, I haven't felt great 2 out of 3 days after my shot. Tonight, I had to leave a party early. It was the first shot at the full dosage. My comment about a hot poker rang true tonight. I've stopped doing the manual injections and started using the gun. I haven't bruised as much or at all.

I felt fine for a few hours then just started getting hot and cold flashes, sweats and then a pounding headache. The next day after my last shot at 50% was the worst I've felt so far. Later today will be a joy. Although if this brief history rings true, it won't be for a while until the full affects are felt. Tonight could have just been a coincidence, or not.

On the plus side, I reconnected with an old buddy. A person he works with was also just diagnosed with MS. In order to help both of us, he wants to get us together. While this is an excellent idea, it brings about that fine line of "I have MS, but don't have it." I've never presented with any symptoms. I was only diagnosed because an MRI showed scar tissue. How old, nobody could tell.

One of the slogans for MSLife Lines is "You don't get MS until you get MS." I have it and I still don't get it. I've read all about it, read the horror stories, know what the future could hold, but what about the present? Usually, when someone is diagnosed with a disease, their life changes and their life is defined by their disease. When it's discovered of an incorrect diagnosis after an extended period of time, depression usually sets in. That one defining, constant thing is suddenly gone. One is left with the question "Who am I?"

I'm still new at this. I'm still trying to define who I am. Hell, I was trying to do that before this. When one suddenly has a ticking time bomb inside them and there's no telling when it could go off, what does one do. My philosophy has always been live life to the fullest, act like it's the last day of your life because there may never be a tomorrow. Great idea when it's only yourself you have to worry about. When all of a sudden your future may depend on someone having to take care of you when you can't take care of yourself, being scared and fear sets in.

Enough waxing philosophical . . . more when the desire arises.