My MS Moment

Unfortunately, I will never forget the day the neurologist told me that I have Multiple Sclerosis. My heart sank. I felt like I let Mitchell down and I truly felt like my life was over. I now know that it is not and I have since witnessed two loved ones actually lose their lives to cancer. But, at the time, it was devastating. No one else in my family has Multiple Sclerosis. Why did I get the diagnosis? What even is Multiple Sclerosis? How is it going to impact my future plans, my kids, my active lifestyle? Will I become a burden for my loved ones? So many thoughts and questions ran through my mind. 

I remember the morning of my MRI I had been feeling so confident that everything was fine and I would just have to get through the five years of MRIs and I could move on with my life. I was down two and only had three to go. But, in hindsight, who really loses their eyesight and doesn’t have an issue? I actually think it is interesting that I didn’t get diagnosed immediately. I can still remember the first time I was in the neurologist’s office after my very first MRI and the nurse that was checking me in asked how long I had MS and I hadn’t even been aware that was what they were looking for. I was so angry. How dare he assume I have MS and there is no way I could have MS. 

I think God was providing me a couple of buffer years to let the idea of MS sink in. No matter how angry I was that the nurse mentioned I have MS, it put the idea in my head, so I was more prepared for that day that the neurologist said I have MS.

I still to this day think maybe the worst part was that they sent me home with a sticky note with one link to the multiple sclerosis society webpage. That was it. They really didn’t even tell me a whole lot at my appointment besides I had MS, there is no cure, but a lot of treatments, and that there was no reason to need to worry about my disease course at this point. I had no idea what to expect, no idea what was going to happen. Multiple Sclerosis is so unpredictable, so complicated, and so different between two people. So, Google was not my friend. And, the internet, in general, was terrifying. It’s no wonder I thought my life was over.

At the time I had been seeing an optho neurologist since it all started in my eyes. So, he had referred me to a regular Multiple Sclerosis neurologist. I also remember that first appointment so clearly. I remember sitting with Mitchell waiting for the neurologist to come into the room and there were pamphlets on the wall about walkers and wheelchairs. There were packets about cooling vests and how to manage your MS. It was terrifying and I was pretty confident this was not my life. Mitchell and I were silent. I was holding back tears and I think we both were sick to our stomachs. But, God blessed me with a fantastic neurologist. He has such a calm and sweet demeanor. He has always been positive and I have always been able to ask tons of questions and he always has acted as if I am his only patient and never rushes me through my appointments. I have really been thankful for him on this journey. And, I think the last couple of years has really surprised him that my disease has not progressed faster. He is hopeful and confident that if I follow my medication I could end up having a very mild disease course. This is exactly what I want to hear!

Even though the year following my diagnosis was extremely hard, I feel incredibly blessed today. I can’t believe that my story has been this easy. I understand that my future is unknown and unpredictable, but I am going to take each day free of a relapse as a blessing. Each day without symptoms is truly a gift to be able to enjoy my early thirties with two little ones running around. If this is the first post you are reading, as a reminder, Multiple Sclerosis is unpredictable and no two people have the same experience. We have a massive list of possible relapse symptoms and it is incredibly hard to diagnose this auto-immune disease. 

Based on predicted timelines, I am “technically” due for a relapse at any time. I am hopeful that I can beat the average person and go several more years before a relapse. I do a damn good job of taking my medication every day twice a day. I have maybe missed 3 total doses in an entire year! I get so mad at myself when I realize I miss a dose. I think all three missed doses were a Friday or Saturday night when I went out to eat or was with some friends. I was so embarrassed to tell the nurse that checks in with me every six months that I missed a handful of doses, but she was really impressed that I have only missed three. I hope as time goes on it just gets easier and easier to take my medication.

My next MRI will be in early August. Please start praying now that my scan will be clear of new lesions and that I will continue to be a boring patient for my neurologist. I would like to just stick to the current plan and not see any activity for a long time! 

Thank you all for your continued support, prayers, and love.

If you would like to support research to end MS forever, please donate to the National Multiple Sclerosis Society here.