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I was diagnosed with RMS in 2001. A few years post-diagnosis, I was forced to quit work, filed for SSDI benefits, went through a horrific divorce and found myself back in Dallas to be closer to my family. Those were challenging times, but I survived. Here’s a little more background about me and my MS journey. 

The majority of my relapses occurred in the first few years of my life with MS. I could be wrong, but in my opinion, I think the most damage might have occurred from my first exacerbation in 2001. This was the very one which prompted me to seek medical intervention and eventually led to my confirmed diagnosis. Subsequent exacerbations or “flare ups” seemed to be frequent occurrences, yet were much less intense and shorter in duration than my first one. Over time, these flare ups seemed to settle down and the disease activity/lesions on my MRI scans mostly showed old lesions (black holes). I continued to have some ongoing activity throughout my spine, yet my brain remained stable with no new lesions. Some of my annoying, yet familiar symptoms would come and go while others became more intense and unwavering (i.e., fatigue, cog fog, and spasticity). Oddly enough, I continued to remain somewhat free of relapses (as far as I know). 

New issues began to pop up around the time I turned 50 years old. That’s when I first started to wonder if my MS could be morphing into secondary progressive MS. 

My doctors hesitated to confirm at first, but last year they agreed I had likely progressed to SPMS. Hearing the news was somewhat of a relief as it only validated my assumptions. In fact, I felt oddly at peace knowing I finally had some answers as to what I had been dealing with over the years. Even after I was first diagnosed with MS in 2001, I wasn’t scared, nor was I sad. I was confused, but took the news as matter of fact and decided to deal with it and move on. It wasn’t easy and it definitely took some time to come to terms with everything, but to this day, I refuse to let MS own me. I refuse to curl up into a ball, give up and cry about what “used to be.” I’m still here! 

I’ve been through a lot in life and this thing called MS is just one more thing. The more crap which gets thrown at me, the more resilient I am to cope with such obstacles and the stronger I become over time. One of my many coping tools involves humor. I find humor an integral component to living well. It’s important to laugh out loud and do it often! Laughter is cathartic, therapeutic, and boosts the immune system. Of course, living life with MS isn’t all lollypops and rainbows, but I try to make the best of each and every day. I’m still here! 

I push myself too hard for my own good. I overstep my boundaries regularly and to my own detriment at times. Eventually, this behavior leads to a total crash and burn situation (mentally and physically). When this happens, it’s time to unplug, rest, and restore until I can reboot and restart again. I’m slowly learning how to be more mindful of my habits and to make self-care a priority. As a life-long people pleaser, I’m learning to say “no” when it’s warranted. On the same note, I’m learning to say “yes” to myself whenever I see fit. I’m a work in progress, but I find it important to carry on with purpose and passion. Whatever life throws at you, remember to keep moving forward. If we try to bring about change for the better, the more opportunity we have to create the life we want, need and desire. I choose to live in the now, eager to explore new territory and ideas for tomorrow because I’m still here!

Thank you to my doctors who listen. Thank you to my friends and family who love and support me. Thank you to my online community of fellow MSers who are always there to share their stories and wisdom with others. Thank you to the advocates and activists who use their voices to make a difference. Lastly, thank you to the musical genius that is Stephen Sondheim for entertaining and inspiring me over the years with his songs and lyrics. Thanks to you all, I’m still here! 

“Good times and bum times, I’ve seen ‘em all
And, my dear, I’m still here
Plush velvet sometimes
Sometimes just pretzels and beer, but I’m here!

“I’ve run the gamut, A to Z
Three cheers and dammit, C’est la vie
I got through all of last year, and I’m here
Lord knows, at least I was there, and I’m here!”

I’m Still Here (Follies – 1971)
Music and lyrics written by Stephen Sondheim