The Power of Sharing Your Story: This is the start of something big!

The well awaited blog is here! I want to officially welcome you all to the New Face Of MS's blog. It's been a few years since I received my diagnosis of Relapsing-Remitting Multiple Sclerosis (RRMS), and I must say that my journey has been one filled with both challenges and triumphs. For many years, I kept my diagnosis to myself, and it wasn't until recently that I decided to share my story with the world. This decision came from a place of empowerment, as I realized that by sharing my experience, I could help others who may be going through a similar situation.

MS is a chronic disease that affects the central nervous system, and its symptoms can vary from person to person. Some of the common symptoms include fatigue, numbness or tingling in the limbs, difficulty with coordination and balance, and vision problems. The fact that the symptoms can come and go, as is the case with RRMS, makes it even more challenging to manage.

When I was first diagnosed, I was in shock. I couldn't believe that something like this was happening to me. I was afraid of what the future would hold, and I felt alone in my struggle. It wasn't until I started to open up to my family and friends that I began to realize the power of sharing your story. By speaking out about my diagnosis, I was able to connect with others who were going through a similar situation. I found that by sharing our experiences, we could offer each other support and encouragement.

Of course, sharing your story can be a scary thing, especially when it comes to a health diagnosis. You may be afraid of being judged, or you may feel like you're burdening others with your problems. But I want to encourage you to speak up and share your truth. You may be surprised by how much support and love you receive in return.

When you share your story, you're not only helping yourself, but you're also helping others. You're letting them know that they're not alone, and that there is hope. You're creating a community of support, and that is a powerful thing.

I want to invite you to join me in the fight against MS, and to share your story with others. Whether you're struggling with a health diagnosis, or you're facing any other challenges in your life, know that you're not alone. We are all in this together, and by sharing our stories, we can create a brighter future for ourselves and for those around us. Let's celebrate life, no matter what!

Visit www.thenewfaceofms.com and click on the "Share Your Story" Form to take the first step! We will post your story to our site and share it on our social media pages. Looking forward to hearing from you!

The New Face of MS

Contact us at thenewfaceofms@gmail.com

Meet - Sharelle Silveira

Utah, USA

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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Leave a comment, and share your experience. We would love to hear from you!

Meet - Travis Schupbach

Washington, USA

When were you diagnosed with MS? 2012

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?

Perhaps my journey with MS is similar to most, or maybe not. Regardless, I'm not afraid to share my truth. Multiple sclerosis has had a significant impact on my life, and I'd like to share a few specific ways. For instance, my daily life is affected by my struggle with incontinence, and although I can walk independently, it's at a slow pace.

#2: What MS symptoms do you have and how do you manage them on a daily basis?

I manage my symptoms by staying calm and meditating. I also, take meds like Ampyra and Tecfidera (Dimethyl Fumarate).

#3: Who/What has been your most important support system?

My family and friends are crucial pillars of support for me. They are always there to lend a helping hand. Frankly speaking, I would have given up without their presence in my life.

#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?

When I go out, I use a cane and a walker.

#5: How do you stay positive and motivated in your daily life? What do you do for self-care?

Despite any challenges I face, I maintain a positive outlook on life. To take care of myself, I typically enjoy taking a warm bath or shower, as well as spending quality time with my family.

#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?

My advice to anyone would be to avoid getting mad and prioritize reducing stress levels. It's crucial to set aside some time to meditate and unwind, even if it's only for 5 minutes. Additionally, it's important to maintain a comfortable temperature during the different seasons - stay cool in the summer and warm in the winter.

#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?

Although I don't have a specific mission or business, I make it a point to raise awareness about multiple sclerosis. When I was diagnosed with this condition a decade ago, it wasn't well recognized by many people. Therefore, I strive to provide advice and increase awareness whenever possible.

Want to become a part of the movement? Click the box below to order your gear!

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Leave a comment, and share your experience. We would love to hear from you!