Tuesday, March 15, 2011


Well I’m surprised to be posting another blog so soon after my last post and given how I ended my last blog, something interesting must have happened on my ski trip. It was interesting all right but not in a good way! The situation was actually very puzzling, I just could not figure out what was going on. It was a beautiful day and the slopes looked so inviting, I was so excited! Once I was strapped into my mono ski there was no time to waste, I was eager to get up the mountain and then right from the beginning problems began. I started pushing towards the chair lift but was having a problem because my outrigger would not stay in the locked upright position. We tried to fix it but the pin just wouldn’t stay engaged so we had to find another one and take them both apart to replace the bottom ski, not that big of a deal, maybe a half hour delay. With enthusiasm and adrenalin pumping through my veins I started pushing towards the chair again which was quite a distance. Skya, don’t have a clue how to spell his name but that’s how it’s pronounced, asked if I would like a push to which I gladly answered yes, no point in tiring myself out right from the get go. There wasn’t much of a line up and we were on the lift very quickly. It was so cool to look at the different runs and the variety of terrains, a lot different than the smaller slope I’d become used to at COP. It must have been 20 years or longer since I had experienced this type of scene and I was excited, perhaps even a little nervous. Everything was even more awe inspiring when we got to the top, then you realize you’re on a mountain, the view was great!
My ski had been changed to a much wider, twin tips ski they called it from the regular ski I had been using. We had discussed changing my ski to this during the year but it hadn’t happened so I was excited to try this new one that had been freshly tuned up. My excitement was very short lived, as I started down the run I couldn’t control it, I could not make a proper turn and fell down right off the bat! Skya pulled me back up and I started down again but the same result. This happened several more times and I just couldn’t figure out what was going on, I thought surely the new ski couldn’t have made that big of a difference. Well something was sure different because I could not do anything; it was as if I had never been on a sit ski before! I was obviously getting frustrated and received encouragement from Skya and Cheryl but that wasn’t helping, I couldn’t even connect two turns, it was just fall after fall! At this point I wasn’t too excited to be at the top of a mountain anymore, at this rate it was going to be a very long and sore trip down. I kept trying but nothing was working so eventually Cheryl called in an SOS to the CADS supervisor. Jacob had been instrumental in teaching me but even with his wisdom, experience and help I couldn’t do anything! It was going to be painful and take forever to get down the mountain so he had to hold me from behind and ski me down. That was actually kind of fun but freaky at the same time, he picked up some pretty good speed and I wasn’t in control of anything, almost like an amusement park ride. So I was finally at the bottom and we found a similar ski or maybe the same one that I had been using all year and changed hoping that would somehow make the difference. We decided to have lunch before going out to try again and afterward I figured I should just take a run down the bunny hill to test out the new ski. It made no difference, I just couldn’t ski, not even the bunny hill! Right off the bat I was down, and down again and again! Unbelievable, I was so choked and confused…what the heck happened? At this point I knew that I couldn’t carry on, I know I whacked my head a few times but the simple fact was that I just had no balance. On my last try up the magic carpet Jacob was behind me encouraging me to not give up, he was referring to next year. At this point I was fully aware that my balance problem was an MS issue, not something I could notice sitting on my scooter or using an aid like my cane or a wall for support but balancing on a single ski was just not happening. Jacob was trying to convince me that even if I couldn’t regain my balance I could still ski next year, just maybe not on a mono ski. I assured everyone that I’d be back; no way could I end things on a crappy note like that!
So that was my mountain trip, totally unexpected outcome and now more than two days later, things aren’t getting any better. Getting around is definitely more difficult and my left eye is not doing very well either. It seems as though I’m having an attack, just over one year since my last one. This disease never ceases to surprise me, I was doing really well and what an opportune time to rear its ugly head again, on the very day of my mountain ski trip! Well at this point it’s not nearly as bad as I’ve been in the past but what’s my next move? I didn’t hear back from the MS clinic today but I think I want to try and catch things early this time. Last time I had an attack I wanted to tough it out and avoid the high dose prednisone but that strategy didn’t work out too well. I eventually had to try the steroids and they had very limited effect so this time I want to try the drug remedy at the very beginning of the attack and hope for better results. I still hate taking the high dose prednisone but there are very few options when it comes to fighting off an exacerbation. The bothersome part is that I’m taking Tysabri to avoid attacks! I was scheduled to have an antibodies test on my next infusion because I’ve been off the drug and now started again they check to see if my body has built up antibodies to the drug. Why can’t my body just build up antibodies for MS!?! Anyway it’s not looking too positive for the effectiveness of Tysabri, now what?? I did shoot off an email to Dr. Moore but it’s doubtful anything will come of that. Maybe he’ll send me for another ultrasound to see if the blood flow from my brain has changed or slowed but then what, he’s not permitted to do anything about it anyway! Two of my MS blogger comrades have gone for secondary angioplasty treatments, one of them is actually on his third but I don’t think that is a likely option for me. It is much easier to receive treatment now in the U.S. but outside of my financial future at the moment. I am still interested in seeing more research results and there are many new conclusions developing from CCSVI conferences like the one going on in Italy right now. I’ll just have to wait and see what the future holds but for the moment I must deal with my current situation. Even though I’m not in terribly bad shape at this time, I know how rapidly that can change hence my proactive strategy this time around. As always nobody knows what is currently happening or what the best option for treatment is so again I will just leave it in the capable and all knowing hands of God.
Although I am very disappointed, you might even say pissed at the most recent developments, I still remain upbeat and positive, there is no other helpful or healthy alternative. I’ll keep my blog updated as things develop both with my health and treatment decisions. I’ll hopefully get in to see my neurologist before my scheduled appointment at the end of the month, I am really eager to see what my last MRI shows!
Stay tuned until then.

1 comment:

TK said...

Awe that really sucks :(...it's great you are keeping positive...that's the hardest battle. Just remember you are not alone. Hugs