Had my 23rd infusion today. Next month I will “celebrate” my two year Tysabri anniversary. I never wanted to go on this drug but it has saved my quality of life and to a big extent, my life as a whole. So for that I am extremely thankful. I am so happy that I can be a good mother to my wonderful boys, wife to my amazing husband, and daughter to my truly devoted parents.
Wish I could say more but my fatigue plus the side-effect of Tysabri “sleepiness” is lulling me to bed… Love you all!
I just can’t win, especially at the end of a 28 day cycle (no, not that kind of cycle). My medication cycle, which I get every 28 days. I can feel nearly a week ahead of my scheduled infusion that my body is jonesing for my meds.
So, I did go to bed early yesterday like I planned. Yay! However, it took me a bit longer than I wanted to fall asleep. I remember looking at the clock and it said midnight – 40 minutes after I laid my tired head down on my pillow. It was a great sleep though, but I definitely do not feel well rested. Ugh. Fatigue is still plaguing me – thus I am trying to wake up with some coffee.
Maybe if I make it a trend to go to bed earlier, it will make a difference. But this Monday, after my medication I should be good to go by Tuesday afternoon.
We are coming upon my six month post-stem cell infusion visit. My goodness, time has flown!
I continued having a lot of trouble with eyesight in my left eye since November and went through three 5 day IV infusions with no improvement in my eyesight 🙁 Thus, I chose to do something I never thought I would do and started on the medication Tysabri
In 5 days I will be having my 4th Tysabri infusion.
And amazingly my eyesight has gotten much better – not directly due to the Tysabri, but simply because my body has stopped my continuous relapse of Optic Neuritis, and I have gotten time to have my body slowly try to heal itself.
I have noticed that I feel better on the Tysabri but about 1 week before the infusion my body reminds me that I need my infusion. In fact, today and for the past three days I have noticed some increased difficulty walking, increased spasms and increased fatigue. It’s weird… I feel like I NEED my Tysabri to feel better.
5 days and counting…
My stem cells are still circulating in my body and still need time to do some healing. At least now they have a chance since my relapses have thankfully stopped for the time being.