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
xoxoxo
Ashley
Hey Sweetie,
ReplyDeleteJust so you know, if Tysabri doesn't work, you do have more options....I am alergic to Tysabri, so now I am going on IVIG. I am now going thru the insurance dance....ugh!!!!
I am just letting you know that you have more options!
Love you!
Becky
I am doing Tysabri (#18 is on the 24th). I've had no new lesions since starting it. Drink lots water for a couple days before the infusion. Just try to stay away from sick people for a few days after treatment. Your immune system gets a little beat up. Take vitamin D3 (4000-6000 units) once a day to help your immune system build back up. Hope everything works out.
ReplyDeleteT-
Ashley, I pray that these infusions work for you. I do have a friend who is disabled and she has CIDP....it's pretty much like having MS but in the Peripheral Nervous System. Like MS, CIDP causes demyelination of the nerves. She receives infusions pretty much on the same schedule as you and it has helped her greatly.
ReplyDeleteIt is not hard for me to believe a 24 yr old could be disabled. I got MS at age 27 and I have now had it for 18 years. You are doing a great job with this blog and I think it is a wonderful therapy to write about your journey. God Bless!
Hi Ashley!
ReplyDeleteI had my second Tysabri infusion yesterday.. and I felt kinda yukky after but I have been under a lot of stress. Slept most of the afternoon away and felt better today. Keep your chin up and think positive, and as you've been told, there are other options. Hopefully you won't have to look any further! Best of luck and God Bless you!!
Thank you for the kind words! I really appreciate it! It means so much to hear feedback and to know that I'm not alone in this battle against MS!
ReplyDeleteHi! Just discovered your blog. I have my first tysabri infusion next Wednesday on the 12th. I'm soo looking forward to it. I am near the end of a really bad relapse, first one since being diagnosed 3 years ago. It's been a crazy summer! Thanks for sharing!!
ReplyDelete-Jessica