Pennsylvania, USA
When were you diagnosed with MS? December, 2015
What type of MS do you have? Primary-Progressive MS (PPMS)
#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?
When I was diagnosed, I didn't really know how to feel. I had just experienced the most painful thing ever, the lumbar puncture and other tests. So, I was really just afraid for my life and I felt very alone; because, I didn't understand what was happening to me. So it's safe to say in the beginning, I felt alone and scared. I had never heard of Multiple Sclerosis or how much damage it could do to the nerves in your body. Being diagnosed with MS has affected my life tremendously, in good and bad ways. On good days, I can say that being diagnosed with MS has made me really take life seriously and never take anything for granted. Because, in the blink of an eye, it can all be taken away. It definitely was an eye-opener for me. However, MS has affected me in bad ways too. On bad days, I have had to endure excruciating pain, rely on medications, and navigate the unpredictable ups and downs of the condition. It has significantly affected my mobility, making even simple tasks like walking, showering, and getting dressed difficult. Performing everyday activities and taking care of myself have become more challenging as a result. Thankfully, my husband has provided invaluable support since the onset of my diagnosis.
#2: What MS symptoms do you have and how do you manage them on a daily basis?
The 4 lesions on my brain, cause constant tingles in my face. They also really interfere with my cognitive abilities. I have continuous headaches, which makes it hard to concentrate and remember things. The 5 lesions on my spine affect mobility in my arms, hands, and back making them hard to use. With that, comes constant pain, tightness, swelling, and occasional seizure-like jerking. The way I manage these symptoms is with medication, to be honest. For my cognitive issues, I keep my brain busy. I like to create books; among other things. Just being creative in general, is what led me to create the Beauty within MS Journal and the Busy Book to help individuals with cognitive issues.
#3: Who/What has been your most important support system?
Wow well, I will have to give the most important support system award to my husband. When I was diagnosed we were not married; so, at any time he could have given up on me and gone on with his life. But he did not, he stuck by my side and has been my rock ever since. I also have my mom, family, and friends who support me as well. But my husband has been my lifeline!
#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?
I used a cane in the early stages of my diagnosis and whenever I relapsed. Currently, I do not use any accessories to manage daily activities.
#5: How do you stay positive and motivated in your daily life? What do you do for self-care?
This may sound crazy, but I honestly get angry with MS. I yell, I curse MS out (lol) and I tell it that it's not going to control my happiness. Then I muscle through the pain and accomplish my goals. For self-care, I take the time to do my own nails, hair and focus on my skincare routine. The list goes on and on. I made a promise to myself after my last relapse, that I would NEVER take the small things for granted again! The mobility of my hands and being able to walk really put things in perspective. When I lost the function of my limbs, I decided at that moment that if the good Lord allowed me to have the use of my limbs again, I would do everything I could to keep that promise I made to myself and I have done just that!
#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?
Ladies and gentlemen whatever you do just...Don't Give UP! MS is not a death sentence. You can still do whatever it is in life you still want to do. You are badass, you are stronger than the average person KNOW it and BELIEVE it! You are loved and you have support from the MS community you just need to tap into it; because, you are never alone.
#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 started a business known as the "Belle Book Studio" which is an online book and apparel store that houses my books; not only for MS, but also for other chronic illnesses too. Previously I mentioned that, I liked to be creative and my first creation was "Beauty Within MS". This is a daily journal, affirmation, medicine tracker, and activity book created to help me find the Beauty Within MS and to help others find Beauty Within MS too. I also created "The Busy Book" Crossword & Activity Book that helps with Cognitive Concentration. Both are available on Amazon.
The effect MS has had on my life, inspired me to tke the next steps in pursuing my goals. I am determined to beat MS regardless, of any limitations or roadblocks that it may try to put in my way and I encourage others to do the same.
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