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. ;-)

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?

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.

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.

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.

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.

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.