When were you diagnosed with MS? April 2015
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 Multiple Sclerosis on Easter Sunday in 2015. My journey with multiple sclerosis started many years before that. I remember a visit to my general practitioner in 2007. I had a lot of tingling in my right hand. She told me to wear a brace when I slept; because, I was probably leaning on my wrist funny at night. This tingling came and went for about three years. I would wear the brace for a couple of weeks, and it would go away. I know now that this tingling was the first indication of MS symptoms.
In 2012, my job required me to do a lot of driving. Sometimes I would drive over three hours a day to get back and forth from work. I pretty much blew the speakers out of my car trying to keep myself awake every day. The fatigue was unbearable. I remember one time, I had to rent a car to go down to South Florida. I was driving a Mustang on the highway, and I had to pull over; because, I literally could not keep my eyes open! I would forget where I was parked all the time; because, I had no recollection of how I got there. The extreme fatigue went on for about six months. I chalked it all up to having a stressful job, never once taking a day off.
The following year was when, I decided to go back to school to get my doctorate. I love learning and was in my element powering through my dissertation work. In 2014, excited about the opportunity to start a new job, I jumped on it. Little did I know that this would affect my health in such a negative way. You see I am an educator, and I love my work. As I mentioned earlier, growth is one of my core values. I love to learn new things, so a new challenge was right up my alley. I dedicated all my time focused on my career. Before I knew it the fatigue had returned. I was so incredibly busy at work that I did not quite notice. When I arrived home every day, I was asleep as soon as I hit the couch to relax, not to awaken until the next morning.
I was working a stressful job, mostly 10- and 12-hour days sometimes more to paint the picture. I was approaching my dissertation defense. I was also in the middle of selling my home and purchasing a new one. This is a lot for anyone to handle on their own, never mind having MS.
One morning in March 2015 I eagerly woke up and started getting ready for the day. In the shower, I noticed that there was a spot on my right side that was feeling numb, and two of my fingertips were also feeling a bit strange. I knew something was wrong, so I called my father, and we went to the hospital. During this initial visit, I spent about three hours on a gurney in the hallway. After some blood work, they told me that I had a vitamin C deficiency they gave me some vitamins and sent me home.
Each day after, the numbness progressed. After a few days, I was convinced that it was definitely not a vitamin C deficiency. Unfortunately, at this time, I was between general practitioners and I needed to find someone quickly. I decided to go to a walk-in facility. The doctor ordered an MRI and found that I had T2 lesions on my brain. The consensus was that I needed to see a neurologist. To be honest, most of the things I learned from this point forward were from the Internet.
As I mentioned previously, the neurologist was not a lot of help. He did a test where he stuck a lot of electrodes on me. It felt like I just kept getting shocked. Supposedly this test was to rule out another possible diagnosis. Because of his packed schedule, I was not able to get another appointment for six weeks. I had two options. I could come back every six weeks for who knows how long to rule out other neurological disorders, or I could check myself into the hospital and demand a full workup. Thank God my dad had gone with me because, I didn’t know what to do when I walked out of the appointment. He didn't know how to advise me either. But he told me he would support me no matter what I decided.
At that point, I couldn't imagine checking myself into the hospital. It felt like that would be giving up somehow. At this point, I hadn't been able to drive for about two weeks. A friend/coworker was giving me a ride to work every day. Thank goodness I had her and my dad for support. He was bringing me to all the appointments I had to see houses. I remember climbing out of the car one time and trying to step up on the curb in front of a new potential home. I couldn't feel the ground below me. I was scared as I looked around the neighborhood, just wanting to walk around and get to know the place a bit. I wondered what was happening to me. How was I going to assimilate to this new location in the state I was in?
I don't know why, but I hadn't cried at all yet. I was confused, and I had no idea what was happening to me really except speculation. It’s possible I was so overwhelmed by it all, I just had no outward emotions. I am a very independent person. Relying on others was difficult. It was probably the hardest part for me at the time, and it still is. Maybe my pride held back the tears.
Anyway the next morning, I woke up and the numbness was even worse. The MS hug was pretty aggressive now. I also had other symptoms beginning to develop like incontinence, fatigue, and brain fog among others. I did not feel like I had a choice, and I checked myself into the hospital. When I got to the emergency room the doctor came in and asked me what was wrong. I told him about my physical symptoms. I also let him know that I had a previous MRI and what the results were. His eyes grew as wide I think as they could, and he said in a really low voice “oh”. Before I knew it the hospital neurologist was in my room. Not long after I was all checked into a private room. Although I was clueless, they knew I would be there for a while.
The MRI was overbooked, and it took three days three finally run the scans. It was two in the morning when they wheeled me down there. An MRI for both my brain and spinal cord with and without contrast. This initial testing took three hours. For some reason, I never had a problem with the tube itself. It was more lying flat on my back for such a long time. If the government wanted to torture people during interrogations, this would be a great way to do it. If you've never had an MRI with contrast, I'll tell you it's a pretty interesting experience. They put in an IV and injected some of (who knows what?) into your body to be able to take the pictures. The injection is cold and I always develop a metal taste in my mouth. I could feel it go throughout my body, and then they slide the flatbed back into the tube for more images. In this moment, I felt helpless and alone laying there listening to the banging. My only savior was the sound of Dave Matthews between all the clanging. At least my favorite music was somewhat comforting.
At this point, let's just say, there were a lot of lesions. They were on my brain and my spinal cord. Dr. Morgan said the ones on my spinal cord were why I was so numb everywhere. So, on day four, which was Easter morning, they brought me down to get the Spinal Tap. They call it a lumbar puncture now, so it doesn't frighten people, I think. But I don't care what you call it, it's still pretty nerve-wracking. So, they do the procedure to rule out any other issues that may be going on in my body before they make a final determination that I had Multiple Sclerosis. There is no real test for MS.
My dad was there with me when I got back from the Spinal Tap. My best friend came to the hospital, as well. She left her family at home to come to be with me on Easter. After a Lumbar Puncture, you must lay perfectly flat for a few hours. This helps to avoid the incredibly excruciating headache that may occur should you move. Again, complete torture! I was in a lot of pain having to lay there and not move. My friend Kristine held my hand the whole time. We had some girl talk, and she even painted my toenails for me. This was the first time that I cried. It was the ugly cry too. The RN came in to do her nursing thing, and I was crying so hard that she left the room. I don’t blame her. It was a lot all coming out at once. Six weeks of tears accumulated into these bellows of emotion.
I was at the hospital for three more days so they could administer the steroids and hopefully get me back to normal. When the nurse came into the hospital room with steroids, she looked at the IV bag and read the dosage indicated on the orders. She actually said out loud that she thought it was wrong; because, she'd never seen such a high dose before and went to check with the doctor. She came back in with the same bag noting that the orders were correct. I had three rounds of intravenous steroids over three days. On day seven I left the hospital.
The next six weeks were a rollercoaster. I sold my home and moved in with my father’s one-bedroom apartment while I waited for the closing of the new house. I ended up getting vertigo from the steroids, so I was out of work for another week. I missed a trip to visit family I had been planning for months. I felt like I let everyone down. I was very overwhelmed with emotions plus the steroid effects had me tearing up quite frequently. Some say crying is therapeutic. I am definitely all about some free therapy.
I successfully defended my dissertation and graduated in June 2015. My family came to celebrate with me, and my dad put on the Ritz. They were the real medicine I needed. I now had my doctorate in educational leadership. I didn't know what my future held then and I still don’t. I’m just trying to live my best life.
#2: What MS symptoms do you have and how do you manage them on a daily basis?
At this point, I am able to manage my symptoms for the most part. They show up every now and again when I am stressed or exposed to too much heat. They will manifest as MS hug, fatigue, and the ever-popular brain fog. I was at a work event a few weeks ago and wasn't able to leave a pretty hot location for an extended amount of time. I had lots of fun that evening but my body did not want to cooperate the next day. So yeah, I also get stiffness and spasms.
#3: Who/What has been your most important support system?
The MS community is special. Even though we all have different stories we come together. We can depend on one another. We don't assert judgment on one another. Once I met my friends Melissa and Morgan I knew I was in the right company. But when I began speaking to other people with multiple sclerosis all over the world, I felt lifted and supported in a way not matched by anything I've experienced. I am grateful to have these thrivers in my life.
#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?
#5: How do you stay positive and motivated in your daily life? What do you do for self-care?
Self-care to me is a mindset. Knowing that I am worth putting in the effort for and knowing that I can live a great life. When I lose sight of myself and lose focus on what's important (me), my mental and physical state goes right down the drain. I maintain a positive and focused mindset on things that I enjoy and what make me the happiest in life. So you will find me at comedy clubs, concerts, and the beach. Those are my happy places that keep the stress low.
#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?
Figure out what the most important things are in your life and make that your focus. My core values are growth and humor. If I am not learning or having a good time, I am not going to put effort into whatever it is I'm doing. And I make no apologies. If it isn't serving me in a positive way, I have no problem saying, "No thank you".
#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?
People have been asking me a lot lately about why I’m starting this podcast. I’ve done some deep reflection and the following story really sums it all up... I started logging onto the Clubhouse App at the beginning of March 2021. I found it pretty intriguing. The very first night I went on the app Angela Duckworth, the author of Grit, spoke to a room full of thousands of people. After that, I was pretty hooked for a while. One morning I found Snoop Dog had been on all night long with hundreds of people, mostly women, just chatting. The reach and scope of the platform seemed endless to me. I stumbled upon some people trying to earn my business by teaching club members how to navigate Instagram. This led me to other notions of the same sort and podcasting came up.
I’ve been listening to several podcasts for many many years and personally get a lot out of them. I tune in to podcasts to learn about how to be the best coach in my field. I’ve been an educator for over 20 years. Coaching for Leaders with Dave Stachowiak is very insightful. He interviews guests with a variety of experiences who share a plethora of knowledge. As the show wraps up each week I have new tools in my leadership toolbox.
I turn to podcasts to laugh. After watching Tom Segura‘s first comedy special, I Googled him and found that he had a podcast. Although Your Mom’s House pushes the envelope on a variety of levels, I find it quite hilarious. Tom, and his wife Christina (who is also a stand-up comedian), interview comedians so I get to learn a lot more about the people I laugh with.
I wait eagerly to hear the next episode of Grow the Show each week, as I have begun planning the debut of my own podcast. Kevin Chemidlin Is not only a charismatic speaker, he provides priceless information for people like me who are just beginning their journey in this medium, but also those who would like to add a new spark to their established broadcasts.
So when I started listening to other podcast hosts discuss their processes on Clubhouse, I was hooked. At first, I really didn’t know what I was going to talk about. I started with education, then moved into social-emotional well-being, and back to education. I really wanted to focus on a topic that I wasn’t immersed in for my career. I began to brainstorm topics I have firsthand knowledge about. I knew I wanted to learn from other people and hopefully offer some insight myself. Multiple Sclerosis (MS) and autoimmune diseases were first on my list. I was diagnosed with MS in 2015 and hyperthyroidism in 2021. When I started my research on the people in this space, meaning all of you who may be reading this right now, I was blown away by the community and the support they provide to each other.
I joined Facebook groups for MS when I had my first round of disease-modifying therapy (DMT) infusions. One of the girls getting another type of infusion told me about the groups. I read through the posts there from time to time. One of the group’s members posts some wild memes that make me laugh hysterically. The other group’s members post more serious questions about MS, while others weigh in offering advice. There have been times when I’ve been very involved in reading through posts and responding, and other times when I haven’t gone on those groups for a while, possibly months.
When I was very first diagnosed I registered for an app called my MS team. That was my very first taste of the online MS community. Remembering back to that time, I felt like there was a great sense of community there. Members were quite responsive to one another and compassionate. Everyone understood, in a way, what others were going through. But there’s also an aspect of that app that I wasn’t prepared to experience. When I log on, it allows me to share how my day is going by indicating I am having a good day, an average day, or a not-so-good day. Some MS’rs would share that they were not having a very good day and explain what was going on with their body and their emotions. Being a newly diagnosed MS patient I was not ready to hear what people were going through.
Scanning through what people had to share and what I could be looking forward to in my future was overwhelming, to say the least. So after a few months, a rarely opened that app up. But since this new podcasting journey started, I’ve been involved with both Facebook groups and the My MS Team App. Now on Instagram and emersed in the space with other people going through similar autoimmune struggles, I am now ready to hear the messages. I can relate so much more to what everyone is going through. The support I’ve received, not only for my physical condition but also for my heart & soul, has been emotionally fulfilling.
I realized, after a couple of weeks on Instagram and going back to the other apps, that there was no other podcast I could do or be a part of that would provide me with this type of community experience. I want to offer people a place where they can be honest with themselves and others about what they’re going through. But mostly a place people in the community would inspire one another.
The name Thriving Over Surviving popped into my head one day as my friend Melissa and I were starting to lay the foundation of what would be the shell of the podcast. I was driving to her house and it just came to my mind and at a red light, I texted it to myself. I forget everything if I don’t write it down. As soon as I said it out loud to Melissa she felt the same way I did. Originally, Melissa and I were planning to do the podcast together. She also has MS and works in the same school district I do. We were introduced, by a mutual friend, years ago. Melissa had an unexpected and positive life event that I am so excited about. However, she does appear on the podcast as a guest where she shares her spectacular news.
I thought about the title of the show quite a bit and came to the conclusion that what thriving is to me might be completely different to the next person. Maybe thriving means not having had a new lesion since the last MRI or it may be that walking today without the use of assistive devices was a success. It may just be having the ability to take a shower. But whatever it is that day, at that moment that provides comfort, hope, or joy... that is the thriving part of life with a chronic illness.
I’ve felt so renewed, spending time with amazing human beings along this journey with me in the last couple of months that I don’t think that I could turn back now if I wanted to. I need these people in my life. Family and friends that have known me for a long time have noticed a change in my optimism level. These community members are lifting me up with joy and I can’t wait to share they are stories of inspiration with all of you.
So my core values, as you will hear over and over again, because it’s very important to me to stay focused on them, are growth & humor. It is essential that I am continually learning new things and sharing experiences that help me to grow. That broadened thought process may be intellectual, emotional, spiritual, or physical. When I learned something new it fills me with complete joy and I want to share that feeling with anyone willing to listen.
Every time I speak with one of these amazing thrivers, I am growing. I grow in my gratitude for them, for this experience, and for the possibilities for the future. If you haven’t heard so already within this very lengthy blog, I am a fan of stand-up comedy which supports my humorous side. As a result, I am committed to making sure that even if we have some tough moments on the show, the overall theme, message, and vibe are of happiness, joy, and laughter.
We discuss lots of heavy topics on the show. We’ve all gone through hard things, us more than others in many ways. But I don’t want people to leave this space the same way they came in. I want people to feel as though...
this is a space I visit that brings me joy;
this is a place where I consistently learn new things about myself and others;
this is a spot I go to where my spirits are lifted;
this is a community where what is shared adds value to my life;
this is a space where I feel safe, understood, and have a sense of belonging.
I want this thriving community to be that place for us. My goal is that the Thriving Over Surviving Podcast provides us with a renewable energy resource we crave. We all have freedom over the choices we make in life. We all have unique needs. We know what is best for our own bodies and minds. Here, we share how our individual choices have guided us on journies of health and wellbeing. This is a community where people share their thoughts about a very personal road they have walked down. Please join me as we embark on this adventure.
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