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.
21 July 2009
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.
12 July 2009
I think this is the lowest I've felt since first getting diagnosed.
20 June 2009
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.
12 June 2009
It's been almost three months since my last post. I haven't really been motivated to do much of anything. The little that I was working out passed by the wayside. Cardio is hard to do when you can't really do what you need to. Work has been so busy lately that by the end of the day, I can't wait to get home and chill.
The injections are going as advertised. Nice bump for about an hour followed by a nice red splotch for a few days. The places where I do have fat doesn't itch much. The injections into the muscle itch crazily. The closest I can compare it to is chicken pox. It itches, but scratch it and it itches like crazy. Injections into the muscle hurt.
Anything physical, I usually pay the price for the next day. Last weekend I probably have done the most in a long time. I helped a friend do some construction on the playground for his kids and then played some volleyball after. The next day I did some more manual labor. I had a two hour nap in the afternoon and was asleep for the night by 10:00.
The helpline from Shared Solutions calls every month. Which is fine, but utterly pointless. There's not a lot that they can say that hasn't already been said. "Do you rotate your injection sites? Are you going shallow or deep with the injections? Do you use the auto-injector or do it manually? Do you heat the area before and ice it down after? Are you missing injections?" The list could go own, but again, utterly pointless.
My lack of motivation has become a driving force and it sucks, but for right now I just don't care.
26 March 2009
Amazingly, there was a seamless transition on my injection meds. The people from Shared Solutions called me five days after my appointment, said they would send an informational packet and told me to call in a few days if I hadn't heard anything on a delivery. In the meantime, even though I said I didn't need a nurse to come out for the show and tell session, they were sending one anyway. I called back a few days later and they said they faxed off the prescription to my specialty pharmacy and I should call them that day. Called the pharmacy and it was ready to go and would be delivered on a Tuesday, my Rebif ran out on Wednesday and the nurse came today.
You have to hand it to the drug companies. They have more promo items to give away. I got a mesh back, a water bottle, hand sanitizer, hand cream, sun glass case, chap stick with holder, sun screen, magnetic picture frame, combination ice/hot pack and of course the obligatory pens. In this case three. Of course they all have Copaxone on them.
The nurse spent about twenty minutes here. In the end she said she felt pretty useless. Most of the people she's sees are newly diagnosed so they need the whole song and dance. After the question and answer session came the moment of truth. Since I have to shoot up every day, I can't really pick and choose where I stick myself, I started with the back of the arm. While the steroids have put 20 points on me since I took the first dose 18 months ago, like most men, it's mostly on my waist. The rest of me is rock hard muscle.
I used the auto-injector simply because it's easier. Not a lot of fat to pinch so . . . deep breath let it out, since she told me it burns just like Rebif, pull the trigger and . . . hey . . . that didn't burn. A minute or so later, it felt like somebody gave me a good pinch, a couple minutes after that it felt like somebody punched me with a knuckle sticking out. Four hours later, it's almost stopped hurting.
So . . . HOLY CRAP BATMAN, THAT HURT.
Tomorrow . . . we'll try my hip or stomach.
12 March 2009
I had my "check up" with the neurologist today. She was pleasantly surprised that the steroids helped as much as they did. I still have some spacicity in my legs but nothing compared to two to months ago. Back then just image pulling a rubber band as tight as possible and trying to do something with it.
I've been searching for the proper phrase and I think it's irony. Her concern is that my exacerbation's are on my spinal cord rather than other places in my CNS. Is there any good spot to have an exacerbation? Anyway there were two small spots on my T6 that would explain the symptoms for this last go around. Given that fact that's where the myelitis is/was: no kidding those are consistent symptoms.
We are changing meds though: Copaxone. Thankfully, I won't have to go through the months of flu like symptoms and will have to worry site reactions and shooting up every day. We did talk about some of the new meds on the horizon. As usual with anything in the states it takes forever for the FDA to give approval so right now looks like 18 months minimum before it gets to market.
There's a couple oral drugs but nothing particular on if its in conjunction with another drug or taken singly. There's a drug that will help with walking that can be taken in conjunction with other meds. Another infusion that's taken once a year that is supposed to reduce exacerbation's by 80%. Nothing definitive on that yet.
I go back in 4 months unless something changes.
09 March 2009
I'm working out a little bit more and more. It's still taxing on my energy though. I can fight through most of it. Sometimes. I had to work at my dad's on Saturday and it sucked me dry. Had to take a nap. I was okay the next day. Maybe my endurance is growing.
I have my follow up appointment this coming Thursday. Refer to another entry for my thoughts on these delightful visits.
But such is the life that we lead.
On to a lighter note : Go ManU beat Inter.
25 February 2009
I figured I must really have MS because after the first time I worked out, I wasn't exhausted, but I did fall asleep watching TV. Closed my eyes and all of a sudden it was an hour later. The rest of the symptoms . . . while not as good as when I was on steroids, it's manageable and I can deal with it.
More to come later.
15 February 2009
Steroids do wonders but 25 days on limited sleep and super appetite leave a lot to be desired. Thursday was the last tablet. Friday night I didn't crash, Saturday on the other hand . . . I think I was asleep longer than I was awake. It took me 12 hours to do 3 loads of laundry. Two naps that went over two hours plus a decent nights sleep and then going to bed early.
All in all, I feel better than have since September. The sad part is that I guess this is probably as good as it's ever going to get. People say do be so pessimistic, but I'm just being pragmatic. You can't change the damage that's already been.
26 January 2009
Last week was the marathon week that started off on such a lovely note. In home care called and arranged for a time for the nurse to come for my infusion: 3:30 to 4:30. At 2;30, nurse calls and says I need directions. Then the oh crap thought hits. She might be on her way. And she was and by the time I got there at 3:20, she was ticked. Not my fault.
Took two sticks to get the line in. Then the fun began. Solumedrol is such a wonderful thing. Instant help. Of course, when there's enough prednisone to jump start a car. . . As usual, most people at work forgot that I had this once before, so the questions started. By now word had spread about the MS, but most people still don't know. Standard response: It's just a cath tube for an IV.
Thursday: MRI. Another catch. Insurance companies in their infinite wisdom over business practices vs health chose not to authorize contrast in the MRI. Instead of 3 to 4 hours inside, I did 90 minutes. "Your doctor will fight it out with the insurance company and we'll get you back in here." "Probably Monday on your results." Damned if they didn't call on Friday after business hours were over and I missed the call.
Called today at 10:00. The results: As if it was going to be a surprise. Lesions on C2 and C3 have shrunk and you have a new lesion on T6. You don't have to have the follow up contrast, keep up with the steroids and your injections, keep your appointment and call if anything changes.
Had to tell the parents, since they kind of suspected something since I wasn't working at the other job as much as I should. Instant worry. Instant regrets.
17 January 2009
I'm not a number counter by any means. It was only meant to put a bottom line on something. But thanks for the haiku.
I adopted a couple of cats right before Christmas. They are 9 months old now and brother and sister. They are Maine Coon mixes. Maine Coons are pretty much a dog in a cats body. Take the best traits of both and there you go. Pure breeds can get large. A not fat cat male can get close to 20 pounds. They can get huge manes, have tufted ears and furry paws. It's nice having something to come home to and something to take care of besides myself.
Last time I signed off with that my fingers were getting all tingly. Things got worse after that. I had a cold which took me three weeks to get over versus two weeks that it took everyone else. After that, I don't really know if it was a stomach virus or something else, but well, you get the idea. It could have been just me talking myself into puking. I had dinner and with every bite I just felt more and more bloated. For the rest of the night it was "I would feel better if I just threw up." Since I felt like crap and I don't willing puke on my own, I decided to go to bed and sleep through it and by morning it would be better. Every time I woke up, it wasn't any better. Finally, by three in the morning, what little I had in my stomach came up.
That's when things changed.
The myelitis had gradually came back not quite to the level where it was at it's worst, but close. Since MS is thought to be auto-immune and auto-immune by definition is your immune system gone into overload, I could have had a virus and what happened next could have been an exacerbation.
My legs are horrible. Just intense tingling and just the tightest feeling I have ever known. Just imagine a rubber band pulled to its breaking point. Just standing for any length of time is pins and needs. Knees and ankles . . . I look like a puppy that's going to grow up to be a big dog. Small legs but big feet just flailing all over the place. The thing with my hands went away and with this came back. My left hand went tingly at the fingertips and worked it's way down. My right hand, something entirely different. If felt like it would if you slapped something really hard. It would itch to no end. So bad that I had to put on a cotton glove so I wouldn't scratch it bloody.
Friday I had my check up with my neurologist. Like a previous post I had, they are the most depressing things when things are going bad. You have to spill your guts about how your body is deteriorating and there's really nothing that can be done except steroids to lessen the inflammation.
The outcome: The prednisone by tablet doesn't seem to really work for you so lets do the Solumedrol followed by a prednisone taper. Since I was due for an MRI, lets do cranium, cervical, and thoracic. Also, we might start thinking about changing meds. Tysabri in the extreme but probably Copaxone since it's every day instead of three times a week for Rebif. Oh, the down side of Tysabri was that it was pulled off the marked after there were three deaths in Europe. The FDA pulled it in the US before anything happened. It's thought that the deaths were caused by dual treatment so it was placed back on the market.
Starting Monday, I'll have a new catheter and an IV bag a day ending on Friday, followed by 20 days of tablets. Thursday I get to sit in the MRI drum for 4 hours since they are doing all three areas at once and since it's with contrast, I get to come home and then do an IV bag. But no biggie, I'm on steroids, I'll be wired for the next month. With the remaining question: Will it do any good?
Sometimes I don't know whether I want to shout or cry. Most of the time I just keep on keeping on.