It really is true when they say “the days are long, but the years are short” and 2021 was no exception. My family and I experienced a lot of very long days, but what I can’t believe is that it has officially been one year since the words Multiple Sclerosis came out of the ER Doctor’s mouth.
It shouldn’t come as a surprise though that this huge milestone has snuck up on me. My days have been filled to the brim since the twins were born and having returned to work full time. In between trying to get three kids ready for school, playing make believe and peek a boo, picking up the house, working, putting the kids to bed, late night dinners, taking care of the animals and dealing with everything else life throws at you, I would always say to myself, “I need to write another blog”, and then before you know it, eight months had passed.
With that being said, let’s rewind to May 2021…
The boys arrived a little earlier than expected via cesarean at the end of May. My husband and I got to spend a very short 20 minutes with them before they were whisked away to the NICU. Thinking back on it now, it does all feel like a blur. Once I was discharged, him and I would visit the NICU each day, bouncing between each of the boys’ rooms until they were finally put together which made it a little bit easier to handle.
I can’t even begin to describe how painful it was to not bring our boys home, it was one of the worst days of my life. I was also feeling immense guilt spending so much time in the NICU while our daughter was back at home without us. We were very lucky to have such a good support system to take care of her while we were at the hospital, but it was still unbearable. I’ll never forget when we were finally able to bring the boys home to meet their big sister and be a family under one roof. That was one of the best days of my life.
The day after the boys were born, I received a call from the radiology department about setting up an MRI. A few choice words came to mind as that was the last thing I wanted to think about as I was just freshly cut open, but I begrudgingly made the appointment.
They already know I have lesions on my brain, this was to see if I also had them on my spinal cord. More specifically, they wanted images of my cervical spine (neck) and thoracic spine (middle back). Based upon previous symptoms I had in the past (tingling, numbness) my neurologist was confident that I had them there as well. These results would help determine how aggressive we should be when choosing a disease-modifying therapy.
I had the MRI in July and the next day I received the results in our automated health chart system. Moral of the story, don’t read your results before you talk to your doctor and then visit Dr. Google. You would think I would know better by now, but clearly I still hadn’t learned my lesson. Besides identifying more lesions which was expected, it was also noted that I had a small syrinx in my spinal cord. Long story short, there was no syrinx but there was a lot of wasted hours of concern.
Shortly after the MRI, I met with the neurologist where we finally went over the different medications currently available for RRMS. After some initial blood work, I finally settled on Kesimpta, a B-Cell therapy. I’m sure you have seen the commercials but if not, it is a monthly shot that is self-administered at home. Our immune system uses B-Cells to help fight infections. For some reason, instead of protecting my immune system, my cells attack the myelin on my brain and spinal cord causing damage and disrupting the communication. These shots lower my B-Cells and hopefully stop them from causing anymore attacks.
I was able to take my first shot in October and even though I definitely felt some tough side effects, I also felt immediate relief. It seemed as though I was finally heading in the right direction since being diagnosed. I was no longer waiting around nervous about whether a flare up was right around the corner, I was being proactive.
I’m not naïve to the fact that I still have this disease and another attack could happen at any time, but being on a high efficacy DMT does make me feel safer. Of course, if it doesn’t work, there are several other options available to those with RRMS.
So what’s next?
Right now I am in a holding pattern until my next neurologist appointment and MRI which will be happing soon. The MRI will be my new baseline since starting Kesimpta and then I will have another one three months later to see if any new lesions have developed.
Am I nervous? Definitely.
But the good news is, unlike my first few blogs when I was originally diagnosed with MS, I am no longer constantly thinking about it. Of course it pops into my mind every once in awhile or when I have to take my monthly shot, but that is a far cry away from where I was a year ago.
I am still going to check in here from time to time as I have new details to share. But what I am most hopeful for in 2022, is that my days continue to be long and filled to the brim with snuggles from my kids, family adventures and self-care.
Be Well – Be Happy – Be Kind – Be Present
-Ms. Meant To Be
MS. MEANT TO BE 