Being immunosuppressed in a COVID world definitely presents complications the average bear doesn’t have to navigate. MS is particularly tricky, because the reason I have the condition is my autoimmune system is on overdrive. In theory that means I should be more protected than most. After all, in order to treat the disease, the goal is to put the immune system to sleep so the body stops cannibalizing itself.
Once I started taking the intravenous meds over ten years ago, I assumed a suppressed immune system would mean I would catch everything known to mankind. I would have bet everything I owned that I’d be sick with a cold , flu, or some godawful thing from Thanksgiving until Spring, but that never occurred. In fact, I can count the number of times I have been ill during this span on one hand, which I still think is odd, and I have no idea what this all means.
The reason this is becoming an issue is because while last month’s plasma transfer provided immediate relief from the weakness and the falling, the relief only lasted ten to fourteen days. Since then, I have been struggling with my balance and ability to move around. I literally have no strength in my ankle, my leg feels like it has no bone in it from just above the knee down, and the weakness gets worse with each passing week.
So while the plasma transfer helped, it appears my condition has regressed. The only thing I have done differently in terms of treatment (other than going two months without doing anything instead of the normal one) is that I suspended receiving the Ocrevus infusion that was due in March. It has been over nine months since my last infusion, and the gap between treatments is supposed to be six.
So my dilemma is to whether to bite the bullet and get the damn thing. This is not the first time I have stopped taking something to my ultimate detriment, and while I cannot clinically prove the infusion has been helpful, my not getting it certainly fits a historical pattern. But I know from lab test results that this drug shuts down cells that fight infections, and that doesn’t sound like a smart thing to do.
What is most irritating about being in a high at-risk group is that you have to think about and analyze everything. This is cumbersome because nobody knows if the decision they are about to make is going to be the correct one. I go through a line of thought that asks if the decision I am about to make is balanced and thought out or impulsive. Is it selfish? It is overly conservative? Is it rational or based on fear? Is it what is best for me? Is it what is best for my family? The process can be draining.
For instance, do I avoid any kind of crowd, even if I wear a mask, if I get the infusion? Do I stay home and not visit anybody or have anybody visit me? Do I live like the boy in the bubble? Or do I throw caution to the wind and say fuck it! I was taking a lot more immunosuppressing meds than I am now and rarely got sick. Why should this be any different?
Well, the difference is the potential consequence, which could be tragic for myself and those around me. That is the rub. One bad decision and the dirt nap can become a real possibility.
While I don’t have any plans for the summer, I like to have options. A group of good friends from out of state have talked about getting together this summer, and while I’d really like to do that I’m not sure how smart that would be if I go ahead with this. I’d also like to go back to a restaurant at some point in time, and be able to visit with local friends. Part of me says why worry if the necessary precautions are taking. Then again, there is that nagging little voice that whispers, “what if?”
My gut tells me to get the infusion sooner than later. I would like some assurances, but I know there are no guarantees. I suspect that I will be reduced to a prisoner in my own house for a minimum of three months if I get the stuff, and I really don’t want that.
But what good is having options if you can’t walk more than ten feet without holding onto or grabbing something? What good is freedom if it means a complete loss of mobility and a quicker date with the wheelchair. Is the risk worth the reward? I’m thinking not, but we are heading into the best time of the year, which would make my confinement seem exponentially longer.
Do I risk being completely disabled or risk being completely dead? I obviously don’t like either choice, so the middle ground is to get the drugs then hide from the world. That is the sober reality of the situation.
I’m waiting to hear to see what my neurologist has to say about my quandary. Meanwhile, I’m trying to figure out how I’d cope with the restrictions I know the infusion would place upon me. One option that crossed my mind is to increase my MMJ intake and live in a comfortably numb state, except when I am working or sleeping, until a vaccine is developed and my sentence is over.
Now there is a thought!