I am so over this relapse. I want to wake up from this bad dream and never sleep again.
I need to take care of my kids. I need to be present for my husband. I need to get to a place where I am able to return all of the acts of kindness I have received. This relapse has taken just about everything from me and I want it all back. All of it. Hell, I even welcome the nerve pain caused by too many squats and leg presses.
I NEED to feel something outside of squishy legs, pain, and numb body parts.
I was getting by when I was being pumped full of steroids. The hot flashes and insomnia helped with my newborn’s sleep schedule and the candy was delicious. I had a false sense of security, but there was no need for a babysitter… for me. And then Blue Cross Blue Shield went and turned my life upside down. Assholes.
I had no idea there would be so many hoops to jump through when I truly needed something. I have a need, not a want, and the hoops have hurt me. The rage I feel for insurance companies each time my feet falter isn’t very lady-like.
You see, insurance companies, at least mine and my mom’s, are no longer giving patients with Multiple Sclerosis the green light when it comes to Tysabri. These days it’s more like a stale green light that will turn red as soon as you think you might make it through. They now have the ability to approve or deny your coverage for Tysabri because they don’t want to foot the bill.
A bunch of turds are sitting in a room, deciding the fate of patients with Multiple Sclerosis.
They don’t want to pay something like $5600-ish a treatment and then whatever it costs to bring you back if you get PML. I get it from a business viewpoint, but these are people’s lives we’re talking about. Their wellbeing.
The waiting game has destroyed any shred of the positive attitude I was hanging on to. It took away my hope and has strained every aspect of my life. It isn’t fair to all parties involved in my recovery.
My mom was approved for Tysabri because she is negative for the JC Virus. Fabulous. I’m glad she made the cut. I was not so lucky. I had to wait weeks to find out I was denied because I am positive for the JC-fucking-Virus. Weeks! Weeks to a person trying to manage the symptoms of a relapse is practically the kiss of death. All of the progress from the steroids? Gone. What a waste of time.
The silver lining that I am able to pass on to any patient out there struggling is Biogen’s free Tysabri program. Their financial aid program is open to those without insurance, as well as individuals on the reject list.
For now, the free drug program is how I am back on Tysabri. Is Tysabri what my doctor wants me on long term? Not at all. Will Tysabri get me back on my feet the quickest? You betcha!
I need to get back on my feet so I can manage my weekly Target trip!
- Loss of sensation/numb body
- Lack of upper body strength
- Mental fog