I'm Still Alive

Yes, I know I haven't written in quite some time. The truth is, I really haven't had anything to write about. No news is good news.

The shots are pretty much the same. I occasionally am late with one. Not to often though.

The muscle spacticity is pretty much the same. Some days are worse than others.

Bladder . . . Well, we can all attest to that. Most of the time, it's a sprint to the bathroom only to have the sensation go away by the time I get there. Then it's a ten minute . . .

I thought I might have had a relapse a few weeks ago. If it was, it was the smallest ever. I couldn't really tell, but the tip of my little finger on my left hand felt tingly. Whenever something happens we automatically think MS.

Still have that same feeling that I am wasting my life away having to work. Some days it's not so much, other's days it's WTF?

I've lost 10 pounds just by eating a little better. I'm sure if I want to get back into my Hugo Boss skinny jeans, I'm going to have to get off my ass and work out again.

I still try and shoot at least once a week. That thrill of being good at something again just didn't come. I had to work to get good at volleyball and then I had to work to stay good at it. After a certain point it's just embroidery. Shooting is the some way. Once I got used to my pistol I was putting the shots in the X Ring and 9 ring. All qualifying rounds. I could shoot more and get a tighter cluster but . . .

In economics there is a theory called Economies of Scale. Basically, it's producing more for less. I compare the Economies of Scale of volleyball to shooting. For an indoor volleyball tourney, $13 for the entrance fee, $20 for food during the tourney and then another $20-$30 afterwards for dinner and alcohol. At the most $63 for 12 hours on a good day.

Shooting: Box of 50 9mm target rounds: $15 or so. Give or take a dollar here and there depending on brand and load. $2 for targets. I usually expend about 120 rounds in about 45 minutes. Have to let the barrel cool off. Grand total about $40 for less than an hour. Olympic target shooter I have no desire to be.

I go back to my neuro on March. Since the last area that was MRI'ed wasn't where I had the relapse, I'm sure I'm due for another when I go back.

No news is good news.

Didn't Realize it had been so long

No news is good news as the saying goes.

I guess after a time, one gets used to the pain of the injections or something. Whatever it is, either I'm used to the pain or they just don't hurt any longer.

I really haven't been doing much of anything. I was going to start working out again after Labor Day, but then I was going down to Louisiana the last week of September. So why start working out when was just going to have to take a week off. Which would have turned to two weeks off. But more on that later. I know it's pure procrastination.

I did manage to drive the nine hours to my parents. With two cats. Without any problems. The cats were a bit mouthy for an hour or so and then settled down. Into the smallest space they could find. When we got there, Logan was easy to get out. Sadie crawled under the drivers seat, dug her claws into the carpet and wedged herself around one of the horizontal supports. Took 20 minutes to get her out. Coming back though, placed towels underneath the seats. Take that.

I managed to drink for four consecutive days with my parents neighbors who are younger than me. Doesn't matter though, we fight right in. As to be expected, the MS questions always arise. Although, I was slightly surprised at my dad's reaction about me having the option to go on Tysabri. The death rate wasn't that big a deal. Maybe it was positive thinking, maybe not.

Since I haven't been able to play volleyball for really almost a year and half since my relapse last
September pretty much ended that hope, I've been just lost. When you do something competitive for over half your life and suddenly it's gone, there's a huge part missing. I loved that I was good at something and excelled at it. I loved the competition almost as much. My mom and dad joined a gun club. It is Louisiana after all. I haven't shot pistol since I was a kid and it was never paper targets. Always an empty can in the middle of a dirt road out in the middle of no where. I had always shot air pistol and rifle at home. Get a trap and fire away.

I forgot how much fun it is. I've been thinking about buying a handgun for a while and my state does have conceal/carry. Just to see how I would do on the shooting test, I moved the target the 21 feet down range and would have qualified easily. Not that 21 feet is a great distance. Then, I moved the target as far as it would go and started doing double taps. Wider disbursement but not bad. When I got home, I unloaded truck, dropped the kitties off and when to my truck dealer and bought a Beretta 92. I've wanted this pistol since I had it as an air pistol. Haven't shot it yet, but soon.

I think I have found something to replace the volleyball. It takes skill to be able to hold a gun steady and put a round right where you want it. It's something that I can take pride in just as much as I took pride at volleyball.

Not Big on a Title

I had my follow up visit Friday with the Neuro. As I stated previously, my hand was getting better. Now, it's about 80% - 90% back to normal. Like all things MS, it changes on a day to day basis. If it had gotten much worse, I was afraid that I would have to start signing my name with an "X".





Last week wasn't really rough, but the spastic muscles in my legs were showing themselves greatly and my feet just burned. When I had my follow up, I had my gait check to see if I needed anything to help with the spastic muscles. But, alas, I guess it wasn't bad enough yet. I am mostly drug free except for the Copaxone. It's been about 6 months since I first started on it, so it's getting ready to move outside that window. Hopefully it works because I'm staying on it for the time being. I suppose if I really wanted to go on Tysabri I could. I checked out the web site and read what people wrote on WebMD. Like al MS drugs, it's great if it works for you, if not, you're probably no better off than before. Granted the chances of death are probably over blown, but because there is a probability there's a possibility.

I had one of those "deep" conversations this weekend. I have always been one of those people who get enjoyment out of anything: going to the art museum, sitting by a lake and reading a book or just doing nothing. A friend of mine lost their dad a couple years ago. While it is the natural order of things, when it happens suddenly, it leads to some introspection. You begin to realize your own mortality. For a majority of your life, mom and dad were always there and suddenly one of them isn't. "Am I living life to the fullest?" Robert Frost called it taking the road less traveled: " Two roads diverged in a wood, and I—I took the one less traveled by, And that has made all the difference."

I have never wanted to work, even though I have been doing it since I was thirteen. I have never wanted to work for a corporation. Where am I? Working and working for a corporation. I can go into the reasons why, and I believe I have done so previously. If I didn't, just watch "Office Space." Everybody has a Milton and some useless, ginormeous tool hack of a boss, some slacker that gets promoted. 'Nough said?

I think part of my so dour mood for the last few months is that the whole purpose of working has changed. It's something I go to every day for the insurance. Instead of living the life that I want to live: stop and smelling the roses, I'm working for the man. If somebody says MS is taking the road less traveled, I'll punch them in the nose.

I work 5 days a week, sometimes 6 and sometimes 7. By the weekend, I'm so tired that going out and doing those things just doesn't seem appealing as compared to planting my butt on the couch and maybe taking a nap. Damn the man.

And Now For The News . . .

I had my MRI Monday on my C-spine. I know that the technicians are supposed to be pleasant and helpful and trying to put the patient at ease but one would assume that when said person asks said patient "Oh, it looks like you have had a few MRI's . . ." with a response of "Four in two years" we could dispense with the BS. I don't need the walk through, I don't need you to ask about how I am doing, just get going and get it over with. Especially when the thing is only going to last 45 minutes.

Got the call about the results the next morning. No new scar tissue on my neck and the two spots on my C2 and C3 have shrunk even more since my last scan in February. Good news but WTF is up with my hand? Unless there's scarring some place else.

Strange of all strange, as soon as the call was over, my hand got getter. Not 100% better, but certainly noticeable.

Ho Hum

I had my periodic check up with my neurologist today. For some reason, I was just very anxious about it. Probably because I had a relapse so soon after starting a new medication. She had a new resident with her today, so I had a little more attention than normal. Which is fine. It doesn't really bother me. My hyper-reflexes in my legs weren't so hyper this time. Some of my other reflexes were spread: Tap my bicep and my fingers twitch. I had to close my eyes and touch my nose. I got the side of it with my right hand and got the tip with my left. After the once through it came time to discuss what to do.

I have another MRI scheduled for Monday. When it comes to MS, the first assumption with any new symptom is that it's MS. My hand could be carpal tunnel, but is probably another relapse. We're going to hold off on another round of steroids for right now and see if my hand will clear up on it's own. The doctor finally came to the conclusion that the mega-doses of steroids in tablet form really don't do anything for me. If it doesn't get better in a month, we'll do another round of IV's followed by a taper.

No doctor likes to continually change medications to see what works. So Tysabri is back on the table. According the doctor, I am an excellent candidate for it. Am I an excellent candidate for PML as well? There is always that question: "What if?"

What if I don't go on Tysabri?

What if I do go on Tysabri?

These are the heavy questions that I left the office with. Needless to say, my dower mood from before hasn't really changed. It's a good thing I get my hair colored or else my grey hair would really be showing.

Happy Birthday to Me

Last Friday was my birthday. My body gave me a present of my very own. For a few days prior, my hand would tingle a little and then go away. Not that it was completely out of the norm. Then finally, it stayed and progressively got worse. Just transfer the way my legs and feet feel and transfer it to my right hand. The tips of my fingers are the worst, my knuckles are stiff and the rest of my hand just feels swollen. I have my next check up with my neurologist tuesday week.

I think this is the lowest I've felt since first getting diagnosed.

So Much For The Summer

For most of last summer, it was business as usual: I played volleyball, I ran, I enjoyed the outside. This past week, Saint Louis have been under a heat warning and will be into at least the middle of next week with temps in the mid to upper 90's and humidity pushing the heat index to over 100.

Conventional wisdom is that hot weather and MS don't mix. No kidding. I certainly found that out with spending 10 minutes outside. Left leg went all spastic and my right hand went numb. Hello air conditioning.

Nothing really new to report. I had a great bruise on my left leg about the size of my hand from the shots. If I would have thought about it, I could have taken a picture to share with the class.