One year ago, I did my last Copaxone shot. From July 2015 until May 2019, I gave myself shots, three times a week, like clockwork to control my MS.
I was first suggested to switch my therapy to a new and much more effective treatment in January 2019. I considered it for a while, and prayed on what to do. After a couple months I decided to just go for it. And I am so thankful I did. In the last year I have only had to get the flu shot, and think about my MS every 6 months. I have had most of my normal symptoms from MS disappear almost entirely. My numbness and leg pain are gone, fatigue is hit or miss but that is probably just life, and my TN is so few and far between I sometimes wonder if I am just having pseudo flash back pains. Unfortunately, I have added the supernatural ability to live through chronic headaches and battle for months on end with insurance and drug companies, but we are working on that now. Overall, I am so thankful that I made the change in my therapy.
Now comes the time that I am getting ready for my next infusion-my first in the middle of a global pandemic. I had my first full one in November, and since COVID19 is such a driving force in daily life, I have been wondering what to do about my May infusion since this whole pandemic started. The way I see it, the virus seems like a gamble. I might get it, I might not. And whether I do the infusion or not, I might be fine if I get the virus, I might not. The only guarantee that I have is that with no MS treatment, my disease will get worse. I have talked to anyone that would listen and is familiar with my situation, multiple doctors, and done a lot of research.
Even after all that, I was still torn, so I went to prayer. Do I get the infusion, continuing to make me a higher risk for this disease, but continue to keep my MS stable? Do I hold on the infusion for an unknown time-frame until the virus is less scary or better treated, but risk another MS relapse? What is your plan for me? I asked God to help me with this decision, somehow give me a sign which way is the right way. I had to trust that he would guide me, because I had already surveyed all the loved ones and medical experts I would listen to and had no more clarity than I did originally.
And then it happened, two weeks ago my MS started to act up. My numbness and pain in my legs and feet were back. I am always tired. My body just feels heavy, (Sigh, even on top of the weight I feel like I am gaining in quarantine…..) I am back to the me I was before I started on my new treatment, it was as if almost overnight I could feel my medicine wear off. I know that I am not alone in this, others have reported feeling the “crap gap”. (The time-frame between treatments that your medicine seems to wear off and you can tell it is needed again.) Some people say it hits them so hard they have changed their infusion to every 5 months instead of 6. Some people say they never have it and wonder if they can space their infusions out even further. That was me last November. I had no issues between May and November, which is part of the reason I thought, maybe I will not do the infusion yet and wait and see. But now I know I need it. There were other plans, and here is the guidance I had prayed for.
I am not saying He was up(?) there thinking “Okay Andrea. This is silly, you know what you should do, but here is a reminder-Boom. Body numb.” Sure-science and medicine are the reason that I am in this situation, and the medicine “wearing off” is the reason that I am having symptoms, but I also believe that this is the sign I had prayed for. I think I was leaning toward doing the infusion, but slowly deciding that maybe I should wait. It depended on the day. I do not know what else would solidify my decision to infuse more than worsening symptoms, my body telling me it is time, and my God helping me make and accept that decision. I have not thought differently since. Even yesterday when the infusion center called to tell me I can have zero visitors. Even when I got a UTI/kidney infection (do not worry, this is part of my life since I was 1. It sounds scary, but I am fine). Even when I remembered my favorite infusion nurse would not be with me this time. I am confident in my decision, because even though I will be alone, except for one stranger checking on me every 30 minutes to an hour, God will be with me, and I will leave there next Friday exhausted either way, but with a much better shot at continuing to beat MS.
For those of you who have prayed with me, or for me, or just talked me through this journey at some point, thank you! I appreciate you more than you know. As for me, I am at peace and looking forward to having it done, and hopefully having more information and data about MS-ers and COVID19 soon.
For all my MS warriors who I have met on this journey, stay strong, and make the decision you feel is best for you! I have discussed with so many of you and am happy to continue to do so. We are all in this together, but it does not mean that all our journeys look the same. Much love!
❤ MS Andrea Jackson