Well, I had my first Tysabri infusion yesterday! It went really well, I did get chills and I got VERY fatigued, so I slept almost all of yesterday. I don't think my allergies helped out that factor at all. I noticed that my tremors increased, so I took another baclofen and they went away for the most part. I feel great today, besides my allergies!
They gave me my appointments all the way till May, so I'm getting my infusions pretty much in the middle of the month, each month. It was kind of relaxing being there... no kids, no one to bother me... it was nice. I'm actually looking forward to my infusions now! lol I'm gonna call my lawyer today to see where we stand on the appeal process. I really need to send them my important records, but it wasn't letting me last time I tried... So I'm going to see how I can get that done. Maybe try from a PC to send a large file? I don't know.
I just wish the appeal process would hurry up... I want to know if I'm getting it.. or if I have to find a job working from home, and tough my way through it. My memory is so bad, I don't see how I could do it, but if I don't get Social Security.... I guess I'm going to have to try.
Taking a break from college this semester is a BIG relief. I am less stressed... and it feels good. I do want to go back though.... again, depending on my Social Security. It's like, they can say NO your DENIED really fast... but when it comes to the appeal, they take their sweet time. Very frustrating, I must say.
My mom came up last night, since I had my first Tysabri infusion, she wanted to be here in case I needed her. We are going to go grocery shopping soon, and hopefully I don't need any assistance this time... but we will see. My next neuro appointment is the 26th... I'm going to really talk to him about my disability and see what he has to say. I have a feeling that it really depends on what the DR says when it comes to my case... and I want to know what he is saying.
Of course not a lot of people can understand how a 24 year old can be disabled, but it's possible, trust me. I didn't go to the gym yesterday cause I felt like crap, and I was sleeping... hopefully I can go today to tough through some things. I saw that they have a pool, but it's outside. I've heard water aerobics really helps those with MS, and I want to try it. The only thing is, being the pool is outside, I'de have to do it in the TEXAS SUMMER, which we all know is not the best weather to be in.
My nurse at the infusion clinic told me that I will have more energy with the Tysabri for like 3 weeks, then the 4th week I will be a little slower, then I will get my infusion and get back on track with energy... can we say roller coaster ride! Tysabri "Active Source" contacted me about being a mentor for Tysabri once I get more infusions. I was going to be a mentor for Avonex, but seeing as it didn't work for me, kinda hard to do that.
I'm crossing my fingers and praying that Tysabri will work for me, because not having anything that will help me will be heart breaking. Just the thought of being out of options is heart breaking, and that's something I don't want to deal with.
Well, I'm gonna get going now. I hope everyone has a good weekend! It's Friday the 13th... AHHH! lol