Today is the end of MS awareness week and I wanted to capture what life is like for me, a young person living with MS.
Once a month I get called by a company who arranges for this box to arrive on my doorstep. Oooh! Is it something fun?
Not really. It is expensive though. $2000 expensive.
There are 8 different disease modifying drugs for those of us with MS. However, right now I can only have one. Why? Well, my insurance only covers 50% of the cost which would leave me at over $1000 out of pocket each month. The company that makes Betaseron is kind enough to provide me with assistance to cover the remaining amount for 10 months out of the year. My neurologist's office was thoughtful enough to save samples for me to get me through the other 2 months. The other companies couldn't guarantee assistance for anything over a year. I am beyond grateful to have Betaseron give me their assistance.
Speaking of 50%, Betaseron reduces my chance of disease progression by that amount. I wish it was higher but 20 years ago there weren't any drug options for MS so it's better than nothing. Researchers are still learning so much on drug options for MS, it is constantly improving.
I am always fearful of it not working because my options are so limited.
Every other night I give myself an injection. Some nights it isn't too bad. The nights when you are tired and just want to crash into your bed it is a pain. Lucas also helps me for the hard to reach areas like my arms. Not fun when you love each other. Not as bad on the nights we have disagreements because he can take his anger out on me I guess. Above on the right is my auto-injector so I don't have to do it free hand and all the bits and pieces I have to mix together. I rotate between 24 different areas so my skin and tissue don't become to cranky and damaged. What does cranky bruised skin look like?
Imagine these all over my body. It did put an end to my bikini career. That was a good thing.
Needles, needles, needles. I have many sharp containers full of needles as they aren't easy to dispose of. I worry about having them in the house with small children. I just discovered I need to fill the containers with sand or kitty litter, duct tape them up and throw them away. Creepy.
When I travel I have to plan carefully and make sure I have everything I need on the road.
A lot of work for something that doesn't give me a cure or completely stop the progression of my disease. How do we know it is working? It just depends on how many symptoms decide to appear. I have an appointment with my neurologist once a year where she tests my neurological responses. Every other year I get a costly MRI on my brain to see if there are any new areas of scaring. My spine has also been affected but I don't need that scan as often through my life. Since symptoms can come and go and increase with intensity, it is important to document all changes I experience.
What can turn on symptoms? Stress, exhaustion and unhealthy habits are major triggers. I can feel numbness, cognitive issues, aches and painful sensations in my hands, arms and legs at any point in time. Some days and weeks I don't feel much of anything.
The uncertainty of the disease creates a lot of stress and worry.
Every morning I wake up and hope that my vision is intact and my legs will carry me throughout the day. Does that stop me from getting up and exercising, playing with my kids, working hard at my job, taking care of my home and spending time with my loved ones? Nah. When I think of myself this is what comes to mind:
Training and running a 10k race for the first time with friends.
All of this possible worry and doubt makes me appreciate what I AM able to do every day. I never take my health for granted and I always focus on what I am able to control in my life. I see how many others with MS have greater health challenges than I do and I'm grateful for what I do have the ability to do. Even if I do end up in a wheel chair some day, I think I can pull the look off:
Of course it helps to have all your loved ones cheering you on.
