I am so happy that you are here! If you landed on my ‘About Me’ page already, you know a little about my motivation for starting this blog. Long story short, I lost more than some feeling and movement when I was diagnosed with MS, I lost myself. I was going through the motions of being okay, but I knew I really wasn’t okay. And you know what? It’s okay to not be okay sometimes. It has taken over a decade for me to get to this point; however, I don’t want that for you. I am here to share everything I have learned and continue to learn on this journey to hopefully make your journey a little easier. At the very least, I want you know that you are not alone. We are in this together!
So, full transparency here… This is probably one of my longer posts. It’s my diagnosis story and I wanted to get it all out at once. Honestly, it’s not the easiest for me to get through. Please remember that trauma and vulnerability look different for each of us. Thank you for being here and being kind as we grow together.
“Nothing is Impossible. The word itself says ‘I’m Possible'”- Audrey Hepburn
A couple of months after my 24th birthday my life changed overnight (literally). I started to experience tingling in a couple of my fingers. It was odd but I ignored it hoping it would go away. It didn’t. In fact, it started to travel to more fingers and up my arm. A trip to the ER led to a diagnosis of carpal tunnel. I wasn’t convinced seeing there was no pain but I didn’t know any better so I trusted them. I was to wear a brace and rest….okay, sure…
Within the same week the tingling continued to consume my arm. I returned to the ER and to my PCP. It was then they ordered an MRI. Whatever that was!?!?! I had no idea back then (Click here to read about that bundle of joy). I was then told to relax as much as possible until I heard about the MRI results. The medical professional assisting me suggested that I take a warm bath and rest. Still no answers but maybe relaxing would help it resolve….somehow.
I went home, laid in the tub, and within a couple of minutes, almost as if I were struck by lightning, my entire right side of my body from my neck down burst into intense and painful tingling and numbness. It was one of the scariest moments of my life. We flew back to the ER again and refused to leave until we had answers. Thankfully they expedited my MRI and the next words I heard were, “you have lesions in your brain”. WHAT?! Lesions? My mind immediately and simultaneously went through all the worst case scenarios and what it could mean for my future, if I even had a future. They explained to me that they believe it was multiple sclerosis but would need a spinal tap to positively diagnose it. Side note: If I knew then what I know now, I wouldn’t have ever let them do a spinal tap. Insert traumatic experience here. Did I mention they didn’t even get any spinal fluid once they were in there??? Yeah…. Moving on…
Did I call, no. Should I have, yes!
So, the next few weeks were a blur of chaos. More MRI’s, blood work, appointments, and lovely steroid infusions, which I had to do two full sets of because of the severity of the episode. If my memory serves me right, it was a total of eight or nine infusions that each lasted two to three hours within a two and a half week period while caring for my child who wasn’t even a year old yet. I even had to have an IV port in my arm for one of the weeks because I had to go in every day for the infusions. Exhausting. I did, however, have one of the best quesadillas of my life during one of my infusions in the hospital. So good…
Anyways, I established care with an amazing neurologist who was the one who told me that I did indeed have multiple sclerosis. He walked me through my next steps and the medication he thought would be best to start with. He also gave me the phone number to a lady who also had MS and was willing to talk to me. It was very kind and meant a lot. Did I call, no. Should I have, yes!
At this point, the pins and needles were so bad it hurt to walk and laying down made me so acutely aware of everything I ended up having to try to sleep sitting up in a recliner for about a month and a half. This is also when the effects of the damage to my spinal column were coming to a head. I lost the use of my right arm and hand. I was weak on my right side and had to be careful walking. My husband had to dress me, wash my hair, and basically do everything I couldn’t do for myself. Trying to do buttons was like asking ice not to melt in the sun. Impossible. I was living a nightmare. I felt completely useless and broken. Every second was a painful reminder of who I was prior to all of this and how I would never be her again. I didn’t know who I was or what my future held.
The Crossroads
I was at a crossroads. What was I going to do? I sat alone one evening and decided to give myself a day. A day to wrestle with all the negative emotions that were boiling up. I needed at least one day to be selfish and feel sorry for myself. So I did and at the end of that day I realized that if I were like this everyday there was no hope for improvement. I would get stuck in a downward spiral and I would most likely take others down with me. It wasn’t worth it. I knew I had to be strong and suck it up. I was determined to get better.
I started physical therapy to try and retrain my muscles. I remember the therapist asking me to close my eyes and open my hand. She then placed something in my hand, apparently, and asked me to describe it. I couldn’t. I couldn’t feel it. It was heartbreaking. She was very kind and coached me through different exercises and things to do at home. She gave me hope. I worked hard, and after four months, with the help of the therapy and new medication I was on, I was able to regain about 95% of the feeling back in my hands.
I would love to say it was all roses and cotton candy from here, but we all know life just doesn’t work that way. I was on my road to recovery physically, but I still had a long way to go. My anxiety increased. I was afraid of everything, even driving. My medication made me incredibly ill, and the deeper I pushed my mental and emotional feelings, the more brittle they became, but more on that in a later post.
Let the Journey Begin!
Fast forward to the present and here I am killing it! Not really, but positive vibes right!? So basically, for the last decade I have been trying to find the best way to live my best life (again). I had to relearn who I was. I had to relearn some basic life skills. I also had to come to terms with the fact that the MS is never going away. It took a while for me to truly believe that, yes, I have MS, but MS doesn’t have me. My life is different than before, but it is still my life and I’m going to make the best of it.
So here I am! I want to make a difference. I hope that my story will inspire people to not give up. My whole goal is to hopefully make your transition from “why me” to “warrior” quicker and easier than mine was. Even though we feel things differently and our experiences are unique, we can find strength and connect with one another based on similarities we have. I am excited for the future and determined to live life with FLAIR while living with FLARE and I’m here for you too. So let’s do this and let’s see what happens. Remember, you are more than enough. You are so much more than you give yourself credit for. Rise up, smile, and shine. Let the adventure begin!
