Tennessee, USA
When were you diagnosed with MS? January 2017
What type of MS do you have? Relapsing-Remitting MS (RRMS)
#1: Can you tell us a little about your journey with MS. How did you feel about your initial diagnosis and how it has affected your life?
I was diagnosed with Relapsing-Remitting MS (RRMS) in January 2017. However, for me, I know it started way before that. Around the summer of 2015, I started working as an Analyst. It was a very demanding job, full of deadlines and analytic reviews daily. I was able to keep up without any problem, of course. But it allowed me to miss certain signs that I probably should have paid attention too. Gradually, I started to notice on my drive to work, that I was having tremors that migrated down my spine if I held my head down. Did that stop me…NO. I just learned how not to hold my head that way. Life kept on moving forward. But one day, I could not overlook the signs anymore. I woke up and before going to work, I noticed that I could not feel the area between underneath my breasts and above my pelvis. It was totally numb. I asked my husband to pinch me…I could not feel a thing! I thought…ughhh, it's probably nothing. So, I proceeded to work. Throughout the day, my symptoms became progressively worse. It started to feel like I could not breathe and I still could not feel my abdomen. I left work immediately and went to the Emergency room. Once there, they ran all sorts of tests, X-rays, MRIs, bloodwork…etc. Once the results came back, they came in and politely said in a non-alarming voice, we didn’t see anything alarming. But, my discharge paperwork said, possible Multiple Sclerosis as a diagnosis among other things, like Hypertension. They said to make an appointment with a Neurologist. Well, what was I to think? So, I went home. The symptoms lasted about 2 more days. After that, they went away. During those 2 days, I went to see my supervisor. Because, I was working at a medical company that had contacts that they could recommend me too. She advised me to talk to her Neurologist. So, I called and made an appointment. Not long after that, I went to see him and he said…he believed it was a pinched nerve. He advised me to have surgery on my neck, at that time. I was quite younger at that time and remember the systems had gone away. So after talking it over with my husband, I decided not to have the surgery and time went on. After that, I started to break out in rashes all over my arms mostly when exposed to extreme heat. Doctors would prescribe an ointment for that or give me a Benadryl shot. So, I thought nothing of it. But as I reflect back, it was probably a result of an over-active nervous system. In late 2016, I finally had a break in my work schedule and I considered having the pinched nerve surgery. I went back to the doctor to re-evaluate some things. We did more X-rays and MRIs of the Brain, cervical and thoracic spine. When the results came back, the doctor called me back into the office. My husband went with me. At that time, he said, let me take you around to see another doctor. He walked us around to my current Neurologist. He then gave me the diagnosis of Relapsing-Remitting MS (RRMS).
What a way to start the year huh? I'm not gonna lie, this news was a blow to me. I felt like I had been gut punched. Right away, I told my Immediate family and that was it. I didn't tell the rest of my family, my best friends, and close associates until June and July 2021. I held on to my secret for dear life, in fear of judgment and being treated differently. Maybe not on purpose...but different. Anyone, else like me? I knew it was up to me to change the narrative of my life and how people see me or individuals like me. So today, I choose to celebrate my life in a way that displays the fighter in me and the legacy I want to leave for my family. So, I am taking the time to share my story with everyone to hopefully empower and inspire others to embrace the light that shines within them and share their truth with others. I would say that MS has made me become a better person. Focused on healthier living and living every day to the fullest!
#2: What MS symptoms do you have and how do you manage them on a daily basis?
I have balance and walking issues. Some days are good and some days are bad. My left leg tends to drag a little and I have spasticity which affects my movement. To manage, I walk with a cane and I attend some type of physical therapy, exercise, or stretching programs.
I have been on several DMT's (Disease Modifying Therapies) since my initial diagnosis. I've been on Gylenia, Tecfidera and Ocrevus to prevent disease progression. I believe the reason that I have been on soooo many meds is because every time I thought I had a new symptom, I complained to my doctor and he changed my meds. Ocrevus has been working...umm OK, I guess. Since taking it, I have been having problems with my right leg too. Which is a matter of concern. I like the convenience of not taking something daily. However, I may be changing to something else soon. He does not want to put me on Tysabri yet; Because, I tested positive for the JC virus antibodies. My doctor says surprisingly, I have a mild case. But one of my lesions is sitting in an awkward place and it's affecting my movement. Go figure! But you know what, through it all my faith has been strong. Thank "GOD" I do not have any new lesions, since my initial diagnosis!
#3: Who/What has been your most important support system?
My husband of 23 years, son, mother, and my siblings are my most important sources of support. They are always there for me, no matter the circumstances. My husband Alvin has been my rock. He has been there for me since day 1. He makes me feel comfortable, even when I limp. He is particularly attentive to my needs and is quick to offer suggestions to make my life easier. It's become somewhat of a running joke that if I mention any kind of discomfort, he'll immediately offer to buy me a solution. So, I have a massage chair, leg massagers, exercise bikes, weights...you name it! I also have a good group of best friends who have been in my life for years. I know they have my back literally. Whenever I'm with them, they make me feel secure and I don't have to lift a finger. Although, I always try!
#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?
Yes, I use a cane daily. Canes have been apart of my life now for about a year. Especially since my limp has become progressively worse. I have them in all colors with different complimentary handles. I get compliments on each one everywhere I go by men and women! My reply is…Thank you and if you have to have one, it may as well be CUTE!
#5: How do you stay positive and motivated in your daily life? What do you do for self-care?
I stay positive and motivated by meditating daily and I also subscribe to the apps pray.com and calm. They help me start and end my day with intentional focus. Self-care to me is very important. It has always been apart of my life, even before my MS diagnosis. I aways take the time to have a "ME" day. A day just for me to get my nails done or get a massage and I love interior decorating too! Yes, retail therapy helps me out of a slump every time!
#6: Your story and experiences with MS are incredibly valuable and can provide encouragement and motivation to others in the community. What words of advice or encouragement would you give to someone who is newly diagnosed with MS or going through a challenging time right now?
I would encourage you to find a doctor that cares about seeing you live your best life, for as long as you can. You also need a team of doctors. I would suggest a neurologist, orthopedist, pain management, nutritionist and a physical therapist. They all work with me, to help keep me as healthy as I can be and moving along to the best of my ability. I would also encourage you to get involved with an MS group, virtually or in person. As well as develop a self-care routine that makes you feel good inside and out. It could be something as simple as sitting on the porch taking in the sun or reading a book. As long as, you are taking time for yourself!
#7: Have you started a business or mission related to MS? Can you tell us about it and what inspired you to take this step?
Yes...I founded the "The New Face of MS". Our mission is to empower, educate and unite the MS community by raising awareness and promoting positivity. We aim to showcase the strength, resilience, and daily achievements of those living with MS, and foster supportive relationships among MS fighters, their loved ones and the wider community. By standing together, we can be the new face of MS and break stereotypes associated with the condition. Together we can educate others and make a real difference for those affected by MS.
I took this step because...If I have learned anything over the past few years, it is that sharing your story is very important. When I received my diagnosis, I did like many of you, I bet. I took to online searches looking for anything I could find on Multiple Sclerosis. Then, I remember looking for people with MS online. I could only find stories of entertainers or those with a large media presence. Their stories and testimonials helped. However, I could not find anyone that looked like me. You know the “Ordinary” everyday individuals like you and me. The ones having good days and bad days outside of the public eye. That’s what I wanted to see, people who were on the same Disease Modifying Therapies (DMT’s/meds) like I was and living their lives unscripted. That’s when I took to social media. I found the largest community of MS’ers on Instagram and I said “YES”! There I was able to make positive connections with people that were displaying the GOOD, THE BAD & The Ugly of MS . Many of which, I was able to learn from just by viewing their pages. I was also able to connect with some powerful mission-driven individuals and businesses too! I wanted to build a community dedicated to sharing their journey in hopes to create a brighter future for all impacted by this condition.
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