05 June 2010
Yesterday, I was having a dead foot. I can always tell when one day is a little worse than the others by how I walk. Sometimes, after I push off, my foot just decides it's going to drop. Mostly I just end up dragging my toe, but yesterday, I almost did a gainer. I saved it, so no falling but ESPN plays of the week it was not.
I decided to put laminate flooring in one of the rooms of my house. 60 square feet. Under normal circumstances, it probably should have only taken a couple of hours to lay it down. Given that the MS affects mostly my legs, it took twice that. I emptied out the room, cleaned the bare floor and laid down about half before my legs started to fail me. After a 30 minute break, I was ready to go, did a couple more rows and needed another break. After I finally finished, there wasn't enough strength in my legs to take everything back in and it wasn't a lot. After a couple hours, I was able to move everything back in.
One unforeseen circumstance is that all the sawing and hammering freaked my scaredy cat cat. The front half of the house is carpet and the back half is tile and now laminate. Their food and litter box is in the back half. After all that, she wouldn't get off the carpet and has been totally frightened of everything in the house. It's been a slow progression of getting her back to the back of the house. My male Maine Coon was totally unaffected by it all and as typical of Maine Coons offered his "help" by laying where ever I needed to be. He seems to love the floor because he runs full tilt and then does a 180 spin. Crazy cats.
I saw an article on a dietary supplement called Prevagen. It contains some protein harvested from jellyfish called aequorin. It's supposed to slow the progression of aging of brain cells and help memory and cognitive function. It also has some affect on neurological diseases. Always leery of naturalist medicine, I took to the Internet for some research. Bottom line, it doesn't do crap for memory, but there may be some benefit for neurological diseases. So I thought I would try it. After a couple days, it seemed that the tingles I had throughout my legs was a little less. Or it could be psychosomatic. Regardless, there was a difference. It probably doesn't really work, but I though I would try it for a couple months and see.
27 April 2010
I had a check-up in March and my worries about a relapse turned false. I was just really tired from a back-to-back cold. Chest cold that turned into a head cold. Two weeks of fighting of a cold took it out of me. As apposed to last year wear I had a cold every other week. That was because of the Rebif and being on it for over a year. The check-up went fine. I finally sucked up my pride and asked for a doctor's note so I could wear running shoes to work instead of somewhat dress shoes for business casual. Since I had those two relapses one right after the other over a year ago, anything other than athletic shoes feels like I'm wearing barbed wire. But working for a corporation means that nobody can make a decision no matter how mundane it is without CYA. If I didn't have to work to have health insurance I would have quit a while ago.
I took a week off work to recharge the batteries since it was desperately needed. I packed up the HUMMER and went to Louisiana. Nine hour driving trip sucks under the best of circumstances. Nine hour trip on two hours of sleep. . . Stupid MS and those middle of the night bathroom calls. I woke up with that urgent need and couldn't get back to sleep after that, so three in the morning, I left. Nine hour drive is long, nine hour drive with a six pound cat on you lap for most of the trip kills the legs. It was all worth it because that night we ordered 60 pounds of crayfish. They were so good, my lips were still number from the spices four hours after I got done eating.
Not much else happened since then. I did wake up this morning with hardly any tingles in my legs and feet and there was barely any spasticity in my legs. It lasted for most of the day. It was good feeling, albeit short lived.
20 February 2010
Being a Summer child, winter always blows. The great thing about volleyball is that the tournaments start amping up in January and end in April. Usually by March though, I was ready to hit the sand. But it got me through. Then there was snowboarding, but I didn't do a lot of it since I moved back from college. Maybe once or twice a season. Now though . . . I still haven't adapted to this new life.
I still have that feeling that every day I work is a day wasted. After a while, they all blend together. I've been working since I was 13 and have never really liked to work. It's not that I'm lazy, it's just that my time is my own. Working for family inflates that belief. I was working, but it was still essentially for myself. The fact that I was transplanted in to "Office Space" certainly helps to exaggerate everything.
Not much to report on the symptoms front. I still haven't decided if I've relapsed or not. I woke up in the middle of the night with the itch that can't be scratched, but it could have just been that I was sleeping on my left arm. Who knows. Being twilight sleep, you can tell yourself anything and make it out to be true.
I was glad to see that the FDA approved a drug that helps walking. As usual, the side affects suck. But it comes down to a quality of life issue. Most days I can walk just fine so I doubt that there would be any reason for me to go on it yet. There's no price to it yet since that's really up to the insurance companies, but wholesale price is about $1,100 a month. Throw in any of the CRAB treatments and it's $40,000+ a year.
Isn't modern medicine just marvelous.
22 January 2010
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.
09 October 2009
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.
21 August 2009
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.
31 July 2009
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.