Sunday, September 27, 2009

Goodbye Copaxone, Hello Rebif

I look out my window, and see the signs of autumn upon us. I love fall, it is by far my favorite time of year. I'm already plotting how to get to the cider mill this year despite my physical struggles. Just as the world is changing outside with the season, it seems once again my own little world in a state of change again as well.

As I mentioned in a previous entry, I had stopped taking Copaxone in preparation to begin Rebif. I'll be honest, I was dreading it. Then the titration pack arrived in the mail, and I simply cringed. Not so much the thought at having to do shots again, but because of the side effects. For those unfamiliar, a titration pack is an increasing dose to get your body gradually accustomed to the medication. I have to do the injection three nights a week; I chose Monday, Wednesday, and Saturday because I can sleep in the following day if needed. The first six injections were only 8.8ml, and much to my relief, I coasted through pretty easily. Now, last night was my second dose at 22ml. Hmmm...not coasting quite as easily anymore. I had a feeling almost tripling the dose would hit me harder, and I was right. I'm not sure how to explain it, except it feels like the aftermath of having the flu. I find the day after (I go to sleep immediately after the shot) I feel extremely achy, run down, and just overall blah. Needless to say, if this is how I feel after only 22ml, I'm seriously dreading the next to jump to the full strength dose of 44ml. Urgh!

I guess I'll have to wait and see how the next few months go. Maybe I'm being foolish even posting on this right now- I admit I'm not in the best spirits. As most know (see previous post) me and stairs simply do not get along anymore. Yet I am currently living in a second floor apartment. Well, to make a long story short, the stairs have officially won the battle. *sighs* About a week ago, I completely blew out my knee trying to maneuver them, and I've been pretty much housebound trying to heal ever since. I'm getting real sick of limping around the house in a flurry of profanity whenever I try to do even the simplest thing like move from my computer to the couch. So couple that with legs that were already sore and weak, and a shot that leaves me achy the next day, I'm more than a little annoyed at life at the moment. It just sucks. I'm sick of being tired, and I'm tired of being sick.

The one bright spot on the horizon, is we are trying to move into a ranch house. No stairs, yay! I actually just called the homeowner back today, I'm hoping we can see it either tomorrow or Tuesday. I'm praying he's also willing to work with us on deposits- we had anticipated a large back check from Social Security to cover the moving expenses and deposits. Thanks to them apparently forgetting I worked full time many years before getting sick, that check hasn't come. Now, we are struggling to come up with the money on our own. Not an easy feat. But, as my currently swollen and fluid filled knee proves, the time has come moving to a single story dwelling is no longer an option- it's a necessity. I just can't live on the second floor anymore, it's making my life ten times more miserable and painful than need be.

So, that's the latest from my end. Say a little prayer my knee heals up and we find a way to move into this house. I guarantee if these two things happen- my next post will be in MUCH better spirits :)

Until next time- Be well!

Friday, September 11, 2009

The Little Things You Never Thought You'd Miss

As we go through our day to day lives, there is so much we do we simply take for granted. The seemingly small things we never actually give thought to, and often do almost subconsciously without any real effort. That is... until the day comes you can no longer them. Then, those tiny little things we never paid attention to seem enormous, and we no longer take them for granted.

This was a lesson I learned this evening. Tonight was my daughter's debut marching band performance, at the first football game of not only the year but her high school career. I was so excited, she's been working so hard and I was just beaming with pride. You must also understand that the marching band kids aren't seen as the 'geeks' they were back when I was in school. In her school, they are quite popular, and the crowd goes wild the minute they hear the drums booming before they even actually march onto the field. They dance, they have amazing choreography as they play, they are so 'alive' and exceptionally good. Just like she'd been waiting for this night a long time, so had I.

My spirits where very high when left for the stadium. Parking was a nightmare to say the least. There wasn't even a handicapped spot open anywhere. No biggie, my husband simply dropped my son and I off at the gates and parked while I bought the tickets. Well, it turned out the walk from the parking lot was nothing compared to having to walk to around the stadium to the other side. By the time we reached the area our team's fans sat, my legs and feet were hurting and very weak. As I looked up at the mass of red covering our side of the bleachers (red is our team's main color), my mind went to instant assessment mode. How was I going to climb these bleachers? Suddenly my high spirits turned to anxiety, because I realized there was no way in God's green earth I'd ever be able to simply hop up the levels as I did the last time I was in a stadium. This... was going to be a problem.

There were zero seats left on the first level. None. We walked slowly along, searching for seats I could access, and found none. Now my anxiety was getting really high; I couldn't stand for the whole game, I couldn't just climb over seats, what in the world was I supposed to do? Finally, at the very end of the stadium, I spotted some end seats open a few rows up, and because it was the end there was also a railing. With an enormous sigh of relief, I trudged my now exhausted and shaky body up the stairs while clinging to the cement railing and we sat down ready for the game.

As we sat for the half hour waiting for the game to start- and the bands big number, which was immediately before the game started- my legs just ached so badly. I tried to hold up my cell phone with my left hand to take pictures only to find it was trembling so much anything I took was just a blur. Then, I felt my right leg start get the cold, numb feeling I experienced during my last relapse; it feels as though my leg is in a bucket of ice water. "I can do this" I thought to myself, almost trying to convince myself I'd be ok. "I CAN'T miss this, so I just have to deal with it awhile". the distance, the sound of drums booming over the already rowdy crowd. Once again my spirits immediately soared, they were coming! I rose to my weak feet with the rest of the crowd, everyone screaming and clapping as the band made their entrance. And I stood there with probably the biggest, goofiest grin on my face as I watched my daughter perform. The crowd danced and sang right along with the music of "The Who" as the band played flawlessly. I watched in amazement as over 200 kids moved fluidly around each other as they played, even making the formation of a pinball machine during "Pinball Wizard". They were just awesome. I'm not sure if it's normal for people to tear up during "Who Are You", but I did. I fought tears of pride and happiness as I watched my little girl transform into a young, talented woman right before my very eyes.

When they finished, I was screaming and clapping right along with everyone else. And as I watched the band exit the field, suddenly I realized I was going to face plant into the guy in front of us if I didn't sit down. My legs no longer ached, they HURT and hurt bad. I mean, I was totally spent. Meanwhile my son was losing his mind, and it became apparent fast that we weren't staying for the whole game. My daughter's part in the night was over, so I was alright with making an early departure. I saw her big moment and watched her play, so now I needed to go home.

Sounds like a simple task, right? Oohhhh no, not by a long shot. There were people lining the cement railing I'd used to make the climb up. Not just a few people, but solid people all the way down the entire stairway. I stopped and leaned into my husband, whispering "we can't leave, I can't make it down stairs without the railing". Two women nearby overheard me, and immediately looked me up and down, obviously trying to figure out what the heck my problem is. (yes, here we go again, you look fine so you must be fine!) We sat back down, and I once again felt close to tears. Not tears of happiness and pride as I had just a short time before, but frustration and even a little embarrassment in the fact I couldn't even go down ten stupid stairs because the railing was blocked. I felt trapped. I felt helpless. I felt...just...awful.

By the grace of God, the row lining the railing decided to move down. I immediately tugged on my husband's arm "the railing is open, let's go!" So we made our way down the stairs, me almost hugging it just to support myself so I wouldn't fall. Finally... now if I can just make it to the gates so my husband can drive the car around, I'll be ok. Fifteen agonizing minutes later, I fell into the car. My legs were so weak by this point I couldn't even lift them in. I had to sit and actually grab my thighs to give them the extra boost into the car. Of course, being as we're still stuck in this dang second floor apartment a few more weeks, I had to make it up them too. I honestly didn't think I would, either. I can't remember the last time I had to push myself so hard.

So... that was my night, and the events that led me to realize all the little things I once took for granted that I now miss so painfully much. The ability to walk. The ability to go up and down stairs. The ability to simply stand for a length of time. All things I would now give anything to be able to do again, even just for one more day, and everyone else around me takes for granted doing so effortlessly. All the little things I never thought I'd miss.

My challenge to you? Take a look at the things in your life that you do, the people around you, and the things you have. Don't take any of them for granted, no matter how insignificant they may seem. Give thanks for the little things while you have them, because sadly, you never know much you'll miss them until they are gone.

Be well all,