A few months ago my neurologist at the MS clinic at st. mike’s told me that he thought it was time to treat my MS more aggressively. I had another relapse with optic neuritis, and he was worried that it could affect my ‘good’ eye. Up until now I’ve been injecting copaxone which is a relatively no risk type of treatment. I’d like to say that injecting helped me get over my fear of needles but the blood lab I recently went to, would heartily disagree. Anyway, the neuro gave me three different treatments to consider all of which were infusion based. He asked me to research and decide which I felt comfortable with. I went home and read up on all of them and quickly realized they all were scary as fuck. My anxiety spiked and I decided to lock it away until after the holidays. Of course my anxiety didn’t agree and it remained at the forefront, haunting me and mocking me. Just recently I decided on which one to try. It’s called lemtrada and is given over a five day period via infusion. Its purpose is to essentially reboot my aquired immune system and hopefully heal my damaged myelin (the coating around nerves). Along with it I would be infused with something to help me beat any viruses during this time period. Since reactions are common I would also be given antihistamines. It’s a full five days almost like a work week starting in the early morning and ending in the later afternoon. I would be monitored by a doctor and nurse during this time. Nausea and other reactions seem pretty common while others report feeling great. So it’s five days the first year and then three days the second year and that will hopefully give me a better shot at avoiding any relapses. After my infusion I was advised to take time off of work since I work in a heavily germ infested workplace and slowly give my immune system time to recoup. I was also advised to not stay in a bubble which would not help physically nor emotionally.
Along with all of that is monthly blood and urine tests for the following 4 years after infusion. Lemtrada carries a shit ton of risks including increased chances of cancer and other good shit like that. I can’t really read up too much on it bc I get anxious and freaked out.
I had a meltdown today. It started off with me feeling nauseous which I realized may be coming from anxiety. I made my way downstairs and when Joey asked me what was wrong….I flipped. I cried, shook, sobbed. You name it. I tried to verbalized my intense emotions but all I could think was ‘it’s not fair’. I kept thinking that this whole process is making me feel more anxious than I have in years. It’s supposed to be moving towards a treatment plan that will help me and yet I feel worse than ever. I told him repeatedly that I couldn’t do this.
I slowly regained some semblance of composure. Okay th CBD capsule may have helped in this task. So now I’m sitting here reflecting on this. I don’t know how I feel. Actually fuck it I do. I know people want me to be a fighter and beat this shit elegantly and with grace. I know people want this not out of malice but out of hope. A hope that goodness prevails. That strength and positivity can beat anything. And that everyone is capable of doing that.
I’m not that person. I never have been. When I was diagnosed with anxiety and depression, I embraced it like a warm blanket. It somehow just made sense. But this. MS. Multiple Sclerosis. It feels foreign and alien to me. It’s like my mind keeps rejecting it like a donated organ.
I didn’t come up with a heartwarming realization. Dear reader, you must have realized that this wouldn’t be that kind of blog.
It is what it is.
And still I rise.