When were you diagnosed with MS? 2004
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?
During the spring before my 10th-grade year, at the age of 15, I woke up one morning to find that my eyes wouldn't align in the same direction. We consulted my ophthalmologist, who requested an MRI. A few months later, I received the diagnosis of MS. At that time, the number of lesions on my brain was too high to even count.
Reflecting back on my childhood, I can now identify various instances that could have been signs of MS. For instance, I remember experiencing a black floaty thing during elementary school, In the 4th grade, my legs would suddenly collapse and In the 6th grade, I had to take several breaks during dance class, due to exhaustion. Despite complaining of excruciating pain in my legs and back, the response I received was often dismissive - like it's just "growing pains".
Ever since I was a child, heat has ALWAYS made me feel like crap. It seemed like nobody cared or wanted to take a deeper look into what was happening.
Due to my physical and mental limitations, I've lost every job I've had. Mainly because, I was unable to keep up with the demanding needs of the job and its responsibilities. I am currently on disability. I don't get much, because of my lack of professional experience. However, thankfully, my husband's job has helped us make ends meet.
As an adult, I now find myself asking my two kids questions about symptoms that could possibly be MS. I am determined to not have them experience a delayed diagnosis, like I did.
#2: What MS symptoms do you have and how do you manage them on a daily basis?
To manage my MS symptoms, I strive to exercise regularly, rest when necessary, stay hydrated, and improve my diet. After taking Rituxan for several years, recently I experienced a reaction, that left me in a state of uncertainty regarding whether or not, I should take a different medicine.
#3: Who/What has been your most important support system?
For personal support, I rely on my family, and I also find Facebook MS groups helpful. Because, they provide a platform for me to seek advice and ask questions of those who are also diagnosed with MS.
#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?
I should probably use a cane. But my ego hasn’t allowed me too. I did buy one though.
#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 exercising. I ride my indoor bike at least 3-4x a week, just to keep my body moving. As part of my self-care routine, I remind myself that it's natural to experience down or depressed days and to learn to accept them. During such periods, I take breaks and I enjoy streaming shows or movies on Netflix. I love watching comedians, they tend to boost my mood! Additionally, I try to keep my curtains open throughout the day to let sunlight in, even on snowy days.
#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?
New MS'ers-Welcome to the MS'er family! My advice would be to join Various MS companies such as the National MS Society, MSAA, MS Focus, etc. They give out free items to inform you about ms. Also, join some Facebook groups for MS where you can connect with other MS'ers. In my experience, Facebook groups usually have medical professionals in them. As well as, if you are having a challenging time, call or text a crisis hotline. However, If you have been diagnosed a while remember, you can get through this. Yes, it may be hard right now, but take a breath, have a cry, and keep on going! You are strong and brave!
#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?
When I was first diagnosed with MS, I participated in a few MS walks with my team called "Sharelle's Hope". We did this for a few years, but as my mobility declined and I could no longer walk the 3 miles, our team slowly dwindled.
I also started an "I hate MS" Facebook group and served as the administrator for a few years. Eventually, the stress became too much, and instead of just shutting down the group, I found new administrators to take over.
Later on, I started a support group in my town, and we had weekly meetings that lasted an hour.
However, we struggled to find a place that could be ours for more than a few months, and eventually, attendance dwindled during the summer months. Despite this, the group lasted for about a year.
Currently, I am working on building my Instagram account, which was inspired by my experiences with MS and the challenges faced by newly diagnosed individuals. As someone who has been living with MS for almost 20 years, I want to reassure others that although it can be scary, it is possible to live a fulfilling life with MS; you just have to adapt and find new ways to approach daily tasks.
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