While I realize it has been more than a year since my last post and the past 2 months I kept thinking that I should get back to blogging for whatever reason this morning I woke up and had yearning to write about my struggles. I guess I hadn’t written anything because I am a little disappointed even ashamed of how poor my health has become. I can’t type anymore so this is all being done by voice and I am in a wheelchair at least 90% of the day. To say that Lemtrada was a great drug choice would be blasphemous. I can’t believe I used to be embarrassed to walk with a walker or cane, I would give anything to be able to use those things again. I should’ve been thankful for what I still could do on my feet. I much rather appear to be drunk then to be completely disabled.
So for those of you who follow me on Facebook and Instagram I’m sure you saw the post in the first week of March of me doing a treatment… Believe it or not my doctor somehow talked me into doing Lemtrada one more time. Trust me, I know how absolutely crazy that sounds. Why would I willingly go through another intense year of discouragement?! When I visited with my doctor I cried and explain to her how my life has been a living hell. To which she replied “your life already was a living hell” I obviously boobed and complained way more than I should’ve. She also explained to me that the treatment I did a year ago was not complete until I did it a second time and was afraid that I might be missing out on any opportunity of good health. Also my Family was encouraging me to at least complete the process. If it didn’t work again, then I would be able to try and new treatment, but not until March 2019. So I guess I was willing to take the chances. Trust me I know how crazy this is.
I do believe however that God has a plan for me and I am supposed to be going through this to learn whatever it maybe. This past year I have learned to ask and accept help, created amazing friendships, my marriage has definitely strengthened and my daughter has learned a certain responsibility that no other four-year-old can understand. I sometimes wonder to myself where I would be without MS… would I have made poor choices? Would I be a horrible mother? Would Jeff and I still be together? These are all questions I ask myself when I try to see the bright side of this shitty situation. I am a very very stubborn and independent person and this past year that has all had to be thrown away. The relationships that have formed over the past year are irreplaceable and I am so thankful that I needed to rely on those people to get me through.
So before this post goes on and on (it has been a year!) I will give a quick little update, and trust me it is rather short and quick! The second week of March I received three days of treatment. And while I was terrified, my nurse also reminded me that the only way that tjis was going to work for me was if I kept a positive attitude and told myself it was going to work for me. So the good news is last year when I receive the treatment I was left bedridden for over a week constantly sick. Vomiting and bloody noses became a norm. And this year I spent about two days in bed and never got sick (knock on wood) so in my mind I am already off to a great start! Not to mention my awesome new wheelchair that helps me do more and more throughout my house each and every day. Trust me I hate the fact that I have to use a wheelchair but I am also so so grateful that I am able to have a wheelchair that can do so many amazing things and allow me to be more of the mother and wife that I want to be. There was something about the day I got the wheelchair, I thought I would be emotional and upset that this is what my life now looksd like. But for whatever reason it was extremely comforting and I felt so blessed and like everything was going to be OK. Every time I have a bad day I think to myself that one day I will look back and say “remember when?” In the words of Bob Marley, “don’t worry about a thing, cause every little thing is gonna be all right.” I think this is my theme song for life and what I have to keep in the back my mind in order to make it through this life.