Who am I?

This past November I was diagnosed with CIS (Clinically Isolated Syndrome) which is the first documented attack of Multiple Sclerosis. CIS is a form of Relapsing MS. At first I was shocked, upset, scared and a million other emotions. I went through my first treatment of steroid infusion therapy and did not see much improvement. So, in January we went back for round two of steroid infusion therapy and after some tough weeks, lots or prayers and positive vibes and a lot of fight I went into remission and am currently living (mostly) symptom free.

Luckily, I have an amazing husband, family and group of friends that have shown and continue to show me an amazing amount of support and love.

I am an avid Harry Potter fan, dog mom of a 100lb snuggle machine (Sir Mac N Cheese), newly diagnosed MS Warrior and a dreamer. I have always been the type of girl who chases after her dreams and doesn’t just sit back and let life pass me by, and I plan on continuing to chase my dreams and live my best life despite of this disease.

A new diagnosis is hard and I would be lying if I said that I was always positive or happy. I have my challenging days too. Writing and reading have always been powerful positive sources of energy in my life so I would like to share my journey with you in the hopes that I bring some of that positive energy into the world with my words too!

The fatigue is real…

Ever since my diagnosis of Multiple Sclerosis this past fall one thing that I have learned is that with MS you don’t just “get tired”. You get fatigued. I’m not talking normal every day fatigue either. I’m talking ” I just moved my entire life’s belongings from one apartment to another…alone” type fatigue. (…yes….I did do that when I lived in Chicago…twice).

This fatigue can hit at any time. For me I pretty much always feel it. I’ve been feeling it for a long time now. It was one of the major red flags that something was off in my body. When you start sleeping 18 hours a day and still wanting a nap during the other six it’s time to get checked out. Some days I feel it less than others. Some days I feel like I could hike a mountain or dance for hours, and other days I feel like I am fighting with my entire body just to get out of bed.

It’s definitely one of the hardest parts of this disease for me. It’s unpredictable (just like everything with MS) and it makes it hard for me to commit to things in advance. I hate the familiar ache in my heart when I text or call a family member or friend to tell them I need to cancel plans…again. It hurts my heart when I can’t attend things I have been looking forward to for weeks. And it freaking sucks to miss out on all of the fun things I could have done if I hadn’t been so fatigued from this disease.

I am lucky to have a supportive husband and a tight knit group of family and friends that are very understanding and supportive of me and my fight with MS. But, I know it hurts them too when they get that last minute text asking to reschedule.

I am learning to come to terms with my “new normal”. I am learning that it is OK to put myself and my health first. I am learning that there is nothing to be ashamed of when I need to nap or rest my body. I am learning that when I push myself too hard one day, I will pay for it in the next few. I am learning that the people who love me understand and do not judge, I am learning to to LISTEN to my body when she tells me that we need a break. I am learning.

P.S. pictured is my dog and nap partner Sir Mac N Cheese