You guys!!! I can NOT believe it has been three whole years since my immune system got a reboot that started my new life free of disease progression. I am so thankful that I was able to travel to Mexico to get this done and I am forever thankful for all of YOU for following me on this journey. I wish I would have kept track of all of the people that were encouraged to pursue HSCT because they heard my story and the hundreds of others like mine. It has been such an honor to join them on their own journey through the discovery, treatment, and finally recovery and starting their new life.
I think it is safe to say that 2020 has been a rollercoaster for the entire world, so that helps a little knowing I’m not alone in this struggle. With all things related to MS, it is hard to know what is MS and what is just normal pains/sensations/mental fog/exhaustion. Heat has always been my biggest trigger of my MS symptoms popping back up, but this year I realized how much stress contributes to this, too. Spring threw us all into the crazy unknown of a pandemic and quarantine and in my case, finding out I am NOT a good kindergarten teacher and that virtual learning is hard. Summer was a hot mess in all senses of the term ‘hot mess.’ The heat proved to be quite unbearable, and thanks to social distancing, I couldn’t get my usual relief of friends’ pools or going to the lake to cool down. We are really hoping that we will be able to get a pool put in at our house next summer, because I don’t know how I can make it through another summer like the one we had if I don’t have a quick way to cool down. The heat and stress of the summer made me question almost daily if my disease had come back, because so often I would find myself with blurry vision, trouble balancing, brain fog, and extreme fatigue. Before treatment, when my symptoms would flare up, it would take many hours and sometimes days for me to return to my baseline of normal. Thankfully it is now a matter of minutes after I cool down (physically and mentally) before I find myself feeling normal again.
I had a virtual appointment with my neurologist in April at the beginning of quarantine for those of us in Michigan and it couldn’t have come at a better time. She reminded me that stress brings on flares of symptoms but that not everything is MS-related and to not get too worked up about thinking I’m relapsing. I’ve had to remind myself of this daily and have been trying to live with a ‘one day at a time’ mentality. It is easy to get bogged down with all of the negativity and uncertainty surrounding us daily, so keeping my head in the right space and always looking for the positive things in each day has been critical for me. In July I was able to have an in-person appointment with my neurologist, and as always, she was blown away with how unremarkable my MS is. I passed all of the crazy little tests we have to do — like hopping up and down on one foot, walking down a hall and back as quickly as possible, walking heel-to-toe in a straight line (this is always so hard and makes me nervous to ever have to do a field sobriety test) — with flying colors. This was my 2nd appointment with her that I was able to participate in a research study where they take blood samples and measure neurofilaments to compare them with my current disease progression (or lack thereof) in hopes of using the data to help predict disease courses and the effectiveness of treatments (https://www.prnewswire.com/news-releases/michigan-based-memorial-healthcare-first-in-us-to-use-new-neurofilament-light-chain-technology-for-multiple-sclerosis-patients-300914523.html). She said it is so exciting having someone like me in this study so my samples can be compared to other MS patients who have not had HSCT, especially so early after diagnosis. It’s really neat knowing that my blood samples could change the lives of people suffering from neurological conditions like MS. How cool to think that someday we might be able to tell (from a blood sample) if we are about to relapse, how bad it may be and which treatment option may be best. MS is like a ninja just waiting to attack. You know it’s there, you know what it’s capable of, but you’re just waiting to see if, when, and how bad the attack will be. For me that is the worst part about having a disease like this. Knowing that I’m fine now, but I could wake up tomorrow unable to walk, is maddening.
All of that rambling aside, how am I doing, you’re wondering?
I’m good! My disease remains in remission despite being off all disease modifying drugs for nearly 4 years. My MRI results came back showing no disease progression and no active lesions. All of my symptoms that I experience are symptoms that I’ve had since being diagnosed, so it is nothing new or worsening, which is the whole goal of HSCT. A lot of people who go through this treatment end up with a lot of their symptoms completely gone and even have lesions (spots on the brain or spine due to damaged nerves seen on a MRI) disappear! So far I am not one of those cases, but as long as this is as bad as it gets, that’s all I can ask or hope for.
My hair is still as curly as ever which is still so strange for me. Note to those of you who might be considering having HSCT done: Don’t wish for ‘chemo curls.’ I finally got my first (professional) haircut last week and got my hair dyed. I finally feel like myself again with freshly-dyed BLUE hair!
So, all is well….as well as one could be in 2020, that is 😉
I remain in remission, I have blue hair that I straighten or put back into a ponytail every day, I am able to play with my family and go for bike rides and do sidewalk chalk, I have a hope for a better tomorrow and a brighter future.
Sorry for the late update, I always struggle with these posts when there’s nothing new or big to report but I feel so blessed that I don’t have anything new or big to report!
Adios, MS! 