My decision to start Tysabri, or Natalizumab was not made overnight. Well maybe it was, but I think the events leading up to it made the decision for me.
Before you read anymore, please know that I am not endorsing or recommending that anyone choose this drug, I am only sharing MY Journey, and it is a long one.
I either made my decision to start or actually started Tysabri in 12/2009. I was in the hospital for IV Steriods AGAIN for ANOTHER MS Relapse. I had been averaging two to three flares a year for the last 5 years. This time I had couldn’t move or feel either of my legs. I was beyond depressed. I literally think I slipped into a vegetative state (not clinically, but I certainly wasn’t there mentally)
My MRI’s showed several herniated discs, my spinal cord was pinched and displaced, but I also had several active lesions from MS. No one could agree on the cause of the loss of use of my legs. To call the doctors a team of doctors was ridiculous. It felt like they were fighting with each other instead of FOR me.
After being hospitalized for the week, I began to regain some feeling and very slight movement of my legs. The five days of steroids were over and the only thing the doctors could agree on is that it was going to take some time and a lot of physical therapy for me to hopefully regain some mobility. They discharged me and wrote orders for home health to visit me everyday.
I don’t know if it is MS, the drugs I took for MS and depression , or basic survival skills of blocking out bad memories, but the timeline is a bit blurry for me about how things happened next. The things I do remember though are:
Being left outside in the rain in a wheelchair
We had at least one step to get into or out of our house at every door. Navigating a wheelchair with very weak legs was hard enough, but the steps were killer. I was so tired of being confined to 4 walls in the house and NEEDED to get some fresh air. I begged my now ex-husband to take me outside, just for a little bit. It was a major ordeal, and turned into a shouting match about why he hadn’t built a ramp yet. He stormed off and left me outside. ( I don’t blame him for his actions, I was scared and very mean and the mood swings were insane. He had been doing double duty with the kids and working full time and didn’t have a clue how to build a ramp) It’s important that I share this story because I think it was the first in the series of events that lead to my decision to start Tysabri. It began to pour outside and there was nothing I could do but sit. I tried to wheel myself to the front door, but the stairs where in my way to getting close enough to reach the door or doorbell. No one could hear me crying or screaming for help. My youngest daughter came looking for me to tattle on her sister for something she had done. When she found me, I don’t know who was more scared. Her or me. I was crying and freezing. I had never been so helpless.
My youngest daughter wouldn’t come near me.
After that night, my youngest daughter wouldn’t come near me. She thought that if she touched me, she would break me more. Looking back now I think she may have been a little bit afraid of me after watching me experience a couple episodes of “Roid rage”. Maybe she was afraid that I was dying. This memory, I can tell is too painful to relive or think about too much, So I will try to focus on the positives and leave it at that. It was time for something to change, if the doctors I had were not helping me I would find one that would.
We are supposed to make our children feel safe and loved, not afraid!
OMG what had I done?
I will post the next part soon. I never knew that writing could be so therapeutic and I am working on laying those demons to rest.