Today was 28th day Tysabri infusion day. It's the day I trudge into the clinic along with all the other MS "Warriors", so they call us. We look like zombies hobbling down the hall to get "treated" and released back into society. I feel crippled and bound and weak and, well, disabled as we amble down the corridor. I spend my 2 hours, that I sit for my infusion, catching up on work and schedules. I feel more optimistic as I leave, and I wonder if the others do too. I think of all the things that I AM and that I accomplish. I am a full-time mom of 3 (which is rarely ever just 3), I am an EMT, I am a treasurer, a marketing director, a beekeeper, an artist... The list goes on. I think "If I can do all that I do.... What are their superpowers'? It's proven that, in the face of disaster or a major traumatic event, people are their best. They do things they can't normally do. They have super-human strength and compassion and drive. There is something about having an incurable, progressive illness and losing so much that makes me like that in every situation, not just in the face of tragedy. I listened to someone speak in church the other day. They spoke of "not just helping someone but going above and beyond". I hear this so often.... going above and beyond.... and I think.... should there even be such a phrase? Shouldn't above and beyond be the norm? When I do something I hope, no matter what it is, that I go above and beyond what is expected. That is MY norm. That is MY "pay it forward". That, in part, is me making the world a better place. That is also, in part, why I am so busy and so tired I suppose.
Which leads me to my Neurologist appointment. I was relaying to my doctor my ups and downs over the past few months and how I can take on the world sometimes and then ....there's the other times. The times when I can't even take on sitting up. She asked if I have been stressed at home (hahaha). So, I watch her face drop as I tell about taking care of 6 kids and my parents (main support system) being away for 2 weeks, and us working on another home remodeling project.. and ... and... I figured I would stop before she had me committed and not let me leave. I added that it wasn't the big things that left me fatigued, it was the lack of endurance at the end of the day to even read an extra bedtime story or to do an extra craft with the kids or make that one last stop in order to complete all my errands. She suggested for me to try a new medication, Provigil. She went on to say, however, how expensive it is and how unlikely my insurance is to cover it for use as an MS med to fight fatigue. She asked how long this has been going on and I told her I was doing SO well a few months ago that I was able to go to school, get my EMT certification and volunteer at the local fire department. Her face lit up! She excitedly told me how that fact alone, that I went on calls all hours of the day and night, would possibly qualify me to get insurance coverage for this med. It has traditionally been used as a treatment for narcolepsy for those that do shift work or work odd hours and have disrupted sleep cycles on a continuous basis. Wonderful. She anticipates it will make a dramatic change in my life. I can't wait.
Another issue I had to address was my hands and arms. Lately, I have difficulty typing. Ever since my first major episode of MS when I lost the use of my hands, they don't seem to work independently. I have to watch them in order for them to perform tasks. So, tying shoes, writing, stirring something, typing...I can't look away. Lately, although I chaperone my hands closely while typing, I will look up at the screen and its just a jumble of smushed together words. I have to almost chicken peck the keys to get my fingers to lift up and move to the next key. I stress that I do a lot of computer work and when I go back to work its probably going to be computer based and I can even type anymore and...I look up at Dr. Bailey after telling her this and expect her to have this "you are crazy" look on her face but instead, she reacted by telling me it's completely normal. So, I begin physical therapy asap and hopefully, they can help me get back on track. She also related this to the spasticity I have been getting in my hands and arms. When I sleep at night my arms are in such pain, like someone is twisting them almost to the point of breaking. When I wake up, my fists are clenched and it takes a few minutes to regain normal motion. Dr Bailey says this is all due to muscle spasticity and a little Botox should take it all away. That's it? A few Botox injections in my arms every 12 weeks and they will be pain-free? This is all amazing.
So, I optimistically prance out of her office and down the hall with all the other MS "warriors" and off we go, a force to be reckoned with. Until next time.....
