I missed my thirteen year MS anniversary.
What does this mean? It means that 13 years ago on June 19 I was 18 years old leaving my house, to most likely engage in summer shenanigans with Stacey, and my mother told me that the doctor called her to confirm my diagnosis. It was official, I had multiple sclerosis. And every June 19th since, I have celebrated, or at least acknowledged this. I have made note of it, often, to recognize my strength in dealing with it and my resilience as an 18 year old in addressing the diagnosis appropriately and in a healthy way.
But, this year I missed it. On June 21st I realized that I had overlooked the day and carried on with my life. I shared this with a couple friends and they asked, “how do you feel about this?” At the time, I realized I had no answer, or at least no honest response without first reflecting.
So, this is what I have thought about. Currently, within my little world of MS related activity I am conflicted around the fact that my own experience with the disease is changing. My MS continues to be managed, I am still doing well and have zero overall arching concerns. I have, however, started a new medication and with it comes a lot of chaos, emotionally and physically.
Due to personal reasons, Michael and I, along with my treatment team, have determined it best at this time to begin Copaxone. This is an injection that is done three times per week; I am fortunate to have Michael to help with this as I cannot fathom doing this on my own. I began the process of switching medications shortly before our wedding and was reminded of the nightmare that is ordering specialty medications. Being on hold for hours, having to repeat personal information multiple times, having incorrect insurance information being recorded, astronomical co-pays and the fear of being denied assistance. Then comes the medication itself. Each injection is a process in and of itself. I must hold heat to the area prior, Michael will do the injection, it hurts…a lot, sometimes I cry, I ice the area, I struggle to get comfortable for about an hour and then I give up and fall asleep, still in pain. The next day the are aches, sometimes it itches and all the while I feel the indentation left in my skin, hopeful that the area will return to normal, full well knowing a side effect is permanent skin marks.
This is tiring. This is unnerving. This is a regular reminder of the toll this disease takes on me, takes on my loved ones, and takes on life. Like I said, my disease is managed; overall I am well. But, overall, I am exhausted and going through a transition in how I am living my life with this disease.
I am re-evaluating my diet in an attempt to feel well in any way I can control. I am working on bettering my sleeping habits, and am navigating my exercise routine in a way that is realistic for me. I am following up with doctors and initiating new appointments. I am communicating better than I ever have with those that can help and I am actively focusing on my anxiety and stress levels as well. Needless to say, I’ve been doing a LOT in a short amount of time.
And this, I imagine, led to the reason I overlooked my 13 year MS-iversary.
To return to the question from my friends…at 13 years with an official diagnosis, 15 plus years with disease symptoms, I feel angry. I recognize that I continue to move through the fluid stages of grief and at this anniversary I feel angry about having MS, about creating an anniversary for something so awful. I feel sad for putting my husband through this regularly (though he is wonderful and knew full well the extent of how exciting a life with me would be). And I feel exhausted, I feel drained of any emotion having to due with being sick.
But, I also feel proud. Proud of all that I manage to do daily, weekly, monthly and yearly. I feel proud of holding a full time job, maintaining a social life, and focusing on those that I love. I feel proud of teaching yoga and finding my self care in more ways than one (bubble baths and wine included). And I feel proud of being honest in my MS journey, though most of the honesty comes through in writing.
Also, I feel grateful. Grateful for my husband, my family, my friends, my friends turned family. I’m grateful for ridiculous pets to amuse me when I just want to scream, and that somehow they know when it’s time to cuddle because I don’t feel well. I’m grateful for the home we’ve created and the life I continue to build and work towards. I am grateful that my disease is mainly sensation based opposed to function based and my suffering and challenges are most often temporary.
While I’m angry and sad and frustrated with MS and with missing this important (to me) date, I am also proud and grateful and accepting. When asked directly how I feel about that, I will most likely share that I am indifferent because in each moment, without reflecting, there is no possible way to gather my thoughts, or to recognize the extent of my feeling around it.
Now, on June 26 I am acknowledging my 13 year and 7 day MS anniversary. Tonight, Michael an I will go to dinner, we will laugh and soak in each other, most likely not talking about MS and actively work to relax. I will have a glass of wine, I will toast to my resilience and I will enjoy the life I have created despite multiple sclerosis.
These Are The Things I Have To Think About 