About a year ago my life got flipped upside down when I was diagnosed with Multiple Sclerosis. I honesty have not been the same since and probably never will be again, but after going through the valley with a dope ass support system and God by my side, I am now standing at the mountaintop ready to share my journey with the world!
There was a point where I forgot who I was. I could only see the bad, the sad and the broken parts of me. I was at my tipping point and it was then that I remember crying out to God for help! I asked: “Why me?! What did I do to deserve this? Please just take it away!” I even began to bargain with God or at least I tried anyways. The always energetic & outgoing girl that everyone loved & adored was now just a mere shell of a person. I would look at myself in the mirror and the light that once glowed behind my eyes was now dim. Eventually, I realized that everything I wanted to change had to come from within. I had to remember who I was. Soon… I found my new reclaimed purpose and remembered that I was a boss babe that could take on any and everything that came her way. I was in fact a child of God and no weapon formed against me would prosper. Once I had found her, I vowed that not a damn person, place or thing would take her away again!
Recently, I was afforded the opportunity to partake in an interview with a fellow spoonie, Morgan of Is Was Will Be Blog. Her “Pass the Mic”series is a way to give other spoonie warriors a platform to share their chronic illness journeys because doing so helps us feel a little less alone in our battles. I hope that you enjoy it and learn something new!
So what’s your name and where are you from?
My name is Rachel Carson. I am a Philly Jawn currently living in Atlanta GA.
How old were you when you were diagnosed with Multiple Sclerosis? What events led up to the diagnosis?
I was diagnosed on September 4, 2019; almost three weeks before my 36th birthday.
I was at a happy hour with a co-worker/friend celebrating our first week back at work (I work at a high school as a Dean of Students) and fainted out of nowhere. No, I wasn’t drunk at all; I had only sipped my first drink a few times as we ate our appetizers.
One moment I was at the bar, the next, I woke up on the sidewalk. Over the next few days, I began to lose feeling in the left side of my body.
I sought medical advice from my PCP amongst other doctors and after about a month of different tests being run (bloodwork, MRIs, etc), I was diagnosed.
TYSABRI is a prescription medicine used to treat relapsing forms of multiple sclerosis (MS), to include clinically isolated syndrome, relapsing-remitting disease, and active secondary progressive disease
What has your treatment plan been? Which medications have you had the most success with?
First, I began a round steroids (both IV & oral – Prednisone). Then I began a Multiple Sclerosis medication called Aubagio, which I was on for 3 – 4 months, but after getting another MRI, it was shown that my lesions had doubled in size.
After I was taken off that drug, it was recommended that I start Tysabri. I have been on this drug since February and it has been working very well; new MRI scans have confirmed this.
Besides the symptoms, what’s the most difficult part of having a chronic illness for you?
The hardest part for me is being away from family & friends that are apart of my support team but live a long distance. I am very stubborn when it comes to asking for help; and those that would do anything for me in a heartbeat, live 700 miles away.
What’s the biggest impact Multiple Sclerosis has had on your life? Have you had to make any changes to your everyday life?
The biggest impact on my life has been my lack of control and predictability. This goes against everything that I know as a Perfectionist Virgo who has OCD. I have had to make adjustments and literally have to take each day at it comes.
Besides physically what other effects has MS had on you (mentally, emotionally, spiritually, financially, etc)? How have you worked through these issues?
Almost immediately following my diagnosis, I shut down. I was emotionally and spiritually broken. I sought some help as I was fresh out of coping mechanisms and was soon diagnosed with depression and anxiety. This was the best decision that I could have made.
My only regret is not starting therapy sooner. My therapist is amazing! She is so much more than a therapist… she is my life coach!
Who or what has helped you the most in coping with your diagnosis?
Having an amazing support team and my faith in God has helped me with coping with my diagnosis.
What goals have you been able to accomplish in spite of your Multiple Sclerosis diagnosis? What’s next for you?
In the last year, I haven’t really accomplished anything that I can think of that wasn’t already in progress prior to my diagnosis or was put on hold because of it.
But now that I feel that I have a better handle on things, I have been rebranding myself and my blogging business to share my journey while living with a chronic illness as a fashion, beauty & lifestyle influencer
Think back to your diagnosis day. What advice would you give to yourself or someone newly diagnosed ?
The day of my diagnosis I had a full out panic attack. The advice that I would’ve given to myself that day would have been to breathe!
Any other comments or words of wisdom you want to share?
I part with these words of wisdom: “It’s okay to not be okay!”
