For those of you that are new to IWWB, Pass the Mic is a way to give other spoonie warriors a platform to share their chronic illness journeys with each other. Sharing helps us feel a little less alone in our battles. Wanna be featured? All you have to do click here.
This month’s PTM warrior is Rachel. She is here to share her experience as a Multiple Sclerosis (MS) warrior.
So what’s your name and where are you from?
Rachel C Philly native 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.
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 confirm this.
Besides the symptoms, what’s the most difficult part of having a chronic illness for you?
The hardest part for me is being so far away from family & friends that are apart of my support team but from afar. 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 plan to rebrand myself and my blogging business to share my journey and life while living with a chronic illness; fashion, beauty & lifestyle.
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!”
If you’d like to connect more with Rachel you can find her here.
Also, if you want to know more about Rachel and her journey, she and I are going live Wednesday 11/18 at 6:30pm EST to chop it up and dig a little deeper. Make sure you tune in via IG to catch it.
