It’s been a little while since I have talked about the current state of the union of myself. A lot has happened this past year as you know in terms of my health. In the late summer and early fall, I had weakness and stiffness in my left hand and fingers. It was as if I had lost all muscle and strength in my left hand and fingers. I literally couldn’t lock or unlock the front door with my left hand without the help of my right hand. It lasted for weeks, and this issue resulted in a doctor’s visit, multiple blood tests and an mri with contrast, and you all know how I feel about contrast.
Then, the worst of it is that the mri results came back showing that I had new lesions in my brain. This meant that I had to come up with a new treatment plan, which I haven’t had to do since I was first diagnosed. This brought back a lot of feelings I had when I was first diagnosed, and I didn’t expect to feel that way. I thought that I was past all of that, but it goes to show that some things you don’t fully forget no matter how much time has passed. For me, it has been exactly 5 years since the original date of my diagnosis. I am trying to tell myself that it’s okay to sometimes feel those feelings I had 5 years ago again. What this does is remind me that there will be changes with my disease as time goes on. Sometimes there will be ups and downs, and I have to mentally prepare for this. So, for those of you reading this who have ms like me, I want you to know that it’s okay to be upset, frustrated, overwhelmed or any other feelings you may have about your diagnosis. Some days are better than others. This is at least what I tell myself as I navigate this new chapter of my ms.
So, anyways, after mentally coping with the news of my lesions, I got together with my family and neurologist to debate and research the best treatment plan for me, and we decided on Kesimpta. To be honest, I wasn’t thrilled about this plan.
I truthfully wasn’t really thrilled about any of my treatment options. I liked my pill treatment I was on for 4 and a half years. It worked with my life and schedule seamlessly, and I was used to it. I didn’t like the idea of not being able to easily cart my medication with me wherever I went, and I didn’t like having to go on a stronger medication since clearly the pill form of treatment was not strong enough to stop my immune system from attacking itself. For those of you who don’t know this, generally speaking, the pill forms of treatment for relapsing remitting ms work the same and get to the same result. So, if one of them isn’t preventing lesions, chances are the others won’t either. My next best options were shots or infusions. A good amount of my friends use infusions for their ms treatment. For me, infusions seemed really aggressive, invasive and time consuming. For some of them, you have to give up almost a whole day once a month or every 6 months to have your infusion done at an infusion center, and you have to have an iv of steroids and Benadryl at the same time. Because I am in the business of limiting chemicals and medications, all of that was a big no for me. So, shots it had to be.
Kesimpta is a shot that you give to yourself once a month. It has to be refrigerated, which makes things a little complicated, and it makes travel a little bit harder and more of a headache. But the once-a-month part is nice once I got used to not taking a pill twice a day. The shot part of things is not so fun, and to me, when deciding my new treatment, I didn’t like the thought of something like a shot or infusion, because both of those options make me feel like I am sick when I am not really sick. Yes, I have a lifelong disease, but on most days, I lead a really normal life. So, I didn’t want to have to do something that represents a real illness or makes me remember on a regular basis that I am not like everybody else. Regardless, I got passed that issue because basically, I had to. There wasn’t really any other option for me that was less invasive. Also, luckily, I don’t have to administer the shot myself; I have enlisted my husband for this task, and he has gotten pretty used to this routine even though he doesn’t particularly enjoy it.
And, the biggest plus side of things is that Kesimpta is actually working. I have had no new lesions since starting my Kesimpta treatment plan. So, I consider myself pretty lucky, and at least, for now my ms is fully under control and I am back to normal. My family and I are very thankful for that. The low of my roller coaster journey with ms is over for now, and I am hoping that this will be the case for a very very long time. Then, my family and I won’t have to go through this again.
Here’s to being well preserved.
Always,
Taylor
