Where Do I Go From Here?

That was the exact question I asked my MS doctor at my latest visit. I have a diagnosis, I have somewhat come to terms with the uncertainty of this disease (depending on the day), and I have learned a lot about it in just a short amount of time, but what I didn’t know, was what was the next step for me. Based upon our conversation, it became very clear that my next step in this journey is to simply wait, at least until the boys are born. After they arrive I will be sent for another MRI, but this time on my spine to see if any lesions are present. The results of this will help her determine how aggressive we should be with the DMTs and which one she will prescribe. After I start taking them I will have MRIs every few months to see if there are any new active lesions, and if so, she will recommend a new DMT. That is the other difficult part of this disease, at least regarding the medicine. It is a lot of trial and error and just because it slows the progression down for a year or two, doesn’t mean it will work year three, so then it is back to the drawing board and a new treatment. Everything had been moving so quickly since my visit to the emergency room and now it feels like I’ve been placed in a holding pattern. It actually reminds me a lot of pregnancy, some days and weeks fly by, where others absolutely drag. Not only am I saying, “I am ready for the twins to be here,” but I am also selfishly thinking “I am ready to start treatment.”

“Where do I go from here?” wasn’t just a question I had asked my doctor, but it was also a question I had asked myself. I had been given this life altering news, so what was I going to do about it, what was my next step? As you can tell, the fact that you are reading this blog shows you one of the answers I came up with to that question. It was time for me to share my story and I am glad that I finally did. The amount of support, love, comfort and kindness that I experienced from everyone was damn near amazing. I truly couldn’t believe I had spent so much of my energy wondering if I should hit the publish button, what a waste of time that was. I felt as though I was no longer buried under this immense weight of a secret diagnosis. MS no longer stands for “My Secret” it is now “My Story.” I can now share with people if I am not feeling great or am sad about what has transpired since January. I can also pick up my MS doctor’s phone calls at work and not have to rush to the other room and whisper because I don’t want anyone to know. These seemingly simple things may only have a little weight to them, but when you have a lot of little things, it begins to add up quickly and before you know it, you are crushed underneath all that weight. Each of you had a part in helping me lift up everything I had buried myself under in such a short amount of time. Every time someone reached out, it felt as though a small pebble had been removed until finally I was able unbury myself and move above ground again. Thank you.

One of the other amazing things about publishing my story is that it gave me the opportunity to connect with several wonderful and strong individuals who also live with MS. If I had kept quiet I would have never had that chance. I was able to read their stories, ask a ton of questions, learn a lot about how they manage this disease and it also helped me to feel not so alone. It also proved that MS is different for everyone and you can’t compare your story to others, it truly is a snowflake. From different therapies, coping techniques, diagnosis journeys and symptoms, the differences were easy to see. However, the one common theme throughout all of them, was their willingness to help. They all remembered how scary of a time it was for them when they were first diagnosed, whether it was 11 years ago or 2 years ago, it’s not a day you ever forget. At the end of each of their correspondence, they all told me to reach out to them with any questions as they arise, I assured them that I would. From the bottom of my heart, thank you.

So what’s next for me? I would say, continuing to live life to the fullest. I know I called this time right now, “a holding pattern”, but as negative as that may seem I have been really appreciating it. These next 13 weeks are the last time that it will just be the three of us before the twins are born and I am trying to soak up every second of alone time with my daughter while we still have the chance. It is also 13 weeks I don’t have to worry about MRIs, postpartum flare ups or DMTs.

Instead of constantly worrying about the future I have been doing a good job on focusing on the here and now, because I will never get it back. So at this present moment the only thing I am focusing on is my family and enjoying this Shamrock Shake, that my husband will also never get back. 🙂

Be Well – Be Happy – Be Kind – Be Present

-Ms. Meant To Be