From Invincible ME to Relapsing MS By Chad, Husband, Father, Software Engineer • January 19, 2017
When we finish high school and start life in the “real world” we’re all invincible, right? Life is laid out before you just waiting for you to take hold—and you’re just waiting to be told where to go.
Caution. What is that? I’d heard the word before but didn’t pay much attention to it, since caution was something for old people. It didn’t apply to me. Full throttle— now that’s what I wanted. What’s that stock car racing saying? Oh yeah, “Go fast, turn left!” Although that didn’t apply to me either, as my mantra was just, “Go fast.” Turning would slow me down. I was 19 and—wait for it—INVINCIBLE!
No longer did I need to sit in a school all day dreaming of setting my own schedule or being told what to do—so I did just what I wanted and I made my own rules. I did go back to school, but this time on my terms. For a little money I could take the classes I wanted to, when I wanted to. This freedom was intoxicating, so I figured that if I had more money, even more possibilities would open up.
Since school was during the day, I’d have to work at night, which left those hours in between for really pushing down hard on the throttle of life. I was finally living the perfect invincible life. I was a full-time student during the day and I loaded and unloaded package trucks throughout the night and early morning. In between I was playing basketball, golfing, running, lifting weights, or hiking in the mountains. This life of invincibility was great, but what I hadn’t considered was my body might have other plans for me, which unfortunately, it did.
To make a long story short, the first few months of 1993 were spent in emergency rooms, intensive care units, regular hospital rooms, and a rehab facility. Was my body trying to tell me I was wrong about this whole invincibility idea? Finally the question was answered when an MRI showed lesions on my brain and spine with the largest of them directly on my brainstem—and not long after, I was diagnosed with relapsing MS.
One of the parting “gifts” I received after being released from a long hospital stay was a fancy new customized wheelchair. I was not a fan, but I was determined to show everyone that invincibility and Chad still fit together, like my hands and the flashy wheelchair gloves I now wore—I’m sure you can sense my sarcasm. So I went back to trying my hardest at exercising and decided not to go on any treatments, which I know now wasn’t the best of ideas. But hey, would an invincible person be taking treatments to help with a disease that shows they’re mere mortal? I think not!
Eventually my mom and my neurologist talked me into starting my first injectable treatment. With the help of steroids and physical therapy, I got back to the point where that fancy chair was no longer needed. Part-time school and basketball came back into my life, but after about a year I was very disappointed. Tests showed that my disability was progressing, so it was time to switch to another injectable treatment. Around this time I had become very active in my church, where I met a lot of other young, single adults, but most significantly, Lara.
We started dating and very quickly we both knew that our meeting was the start of a new life together. This new relationship brought that invincible air back, as I just had to show her everything I could do. Apparently something worked (or maybe she just felt sorry for me) and we were sealed together for time and all eternity on February 3, 1996. Again, invincible me paid no attention to common sense and we moved into our first apartment, a sub-ground-floor unit with stairs to get down to it. Some poor EMS workers had a fun time carrying me up those stairs a few months later when I had another relapse and couldn’t walk. Then I was back to the hospital for more steroids and another injectable treatment.
Now let’s skip ahead a few, okay, closer to 20 years. We had moved across the country and lived in 3 different apartments and 4 different houses. Yes, we’re tired of moving. :) I had been on 6 different relapsing MS therapies—including injectables, orals, and infusions. My relapsing MS was progressing and my hope was decreasing. That’s when my neurologist first brought up LEMTRADA. After more than 20 years and with everything I’d tried thus far not working for me, I wondered, could this be my next treatment option? I read about the possible benefits and how LEMTRADA is thought to work, and that caught my attention.
Of course, we discussed possible side effects, including those that could happen during infusion days, such as headache, fever, and rash, and the fact that I would have to be monitored for autoimmune side effects and skin cancer (melanoma) until 4 years after my last round of treatment or longer. After many more discussions with family and friends, Lara and I decided that in my case the possible benefits outweighed the risks and together with my neurologist, we decided to move forward with LEMTRADA.
After my treatment, I’ve been very pleased with my results. Of course, everyone’s body responds differently to medications, but my results have been positive.
Are you ready for this??? Since my first round of LEMTRADA I’ve had NO relapses and my neurologist has confirmed that I have not had any disability progression. Needless to say, I’m quite pleased with those results!
This has been a condensed version of my life with relapsing MS over the past 20 or so years. Trials and hardships will always come our way, but what we do with them is what really counts. What can make our souls invincible is faith, hope, determination, and the relationships we form with others. No matter what relapsing MS therapy you choose, an invincible mind will always make things work better for you. Or in other words, it will help you bear with any challenge presented.
- THE DECISION
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