Well, well….Let me reintroduce myself since it’s been so long. My name is Scott and I have MS or Multiple Sclerosis. I was diagnosed in 2007. March 8, 2007 to be exact. I’ve been living with this disease for almost 13 years. It’s been one hell of a ride. I’ve been through the gauntlet of treatments starting with Rebif then on to Betaseron. Followed that one with Tysabri which I firmly believe was the best for me but that pesky JC virus decided to join the party and threw a wrench in that one. Now I am on Lemtrada. This treatment was supposed to only be two rounds of infusions one year apart. 5 days the first year and 3 days the second year. Well leave it to me for my body to decide that 2 rounds just weren’t enough. After an MRI showed two new lesions last year, I had round 3 last July. I actually spent my 40th birthday at the dr’s office getting the last day of that round of the medication. Fun times!
It’s been a while since I updated y’all on how I’m doing. My heart just hasn’t been into writing any of this at all. I guess I’ve been in some sort of depression about the medication not working as well as I had hoped. I guess I read too many success stories and got my hopes up. Should’ve known better I guess. Overall, I’m still very undecided about how I feel Lemtrada has worked for me. I feel like I’ve been on a downward slope with no end in sight. My walking is worse. I’m using a cane full time now. I also wear an AFO on my left leg to help with the foot drop on that leg. I’m constantly exhausted. Never imagined I would be here when I hit 40. What’s 50 gonna be like? Hell, what’s 45 gonna be like at this rate?
There’s times I look back and miss so many things that I used to be able to do and enjoy that I no longer can without issues or accommodations. I am struggling to find myself again. To enjoy the little things in life. I just don’t know how to get back to that place where I am happy with who I am and who I’ve become. I love my wife and my kids beyond words and I am extremely thankful for them every day of my life. I would’ve given up a long time ago if it wasn’t for them. But I also feel so guilty for them to have to deal with this. With me.
These are just thoughts that run through my head daily. I push forward and continue going no matter what in hopes that one day I can return to being me. Yes I have this baggage called MS that is going to be with me forever and even after all this time with it I keep hoping something new will come along to help me. I’m thinking of starting at the gym to try to get some of my strength back. Maybe if I can feel a little more In control of my body, I can get myself back to where I want to be. Who knows?! I just know something needs to change.
Any ways, enough downer talk. I just wanted to get it out there. I feel if I get it all out there in the world, it will help. That’s one of the reasons I started this blog all those years ago. Might as well get back to it and put it to use. Right? I hope anyone that reads this is doing well. It’s time for me to get to bed. Thanks for reading my ramblings.