It has been almost 2 years since I sat down to reflect and put those reflections into words….words that I choose to share with you in my blog anyway. There has been so much going on in my own life, the lives of people I care about and the world as a whole. It has been a difficult and personal decision to keep my writing to myself; my opinions of an often-shattered world, and the most influential impact to me personally – MS. I am incredibly thankful that my life with this disease continues to be stable and I feel lucky for that every single day.
MS has taken a lot from me but I will never let it take away my optimism, my hope for the future, my eagerness to stand with my daughter as she explores the endless possibilities for her in this life.
So, what’s been up in my world? I am still on the infusion treatment, Ocrevus, and it has treated me pretty well overall. I had an MRI recently and all seems to be relatively stable, only increasing my confidence in this drug improving my journey with MS now and for years to come.
I’ve had COVID twice, which was anything but a good time but I fully understand it could have been a hell of a lot worse, both times. I spiked pretty high fevers and that made every single MS symptom I already had, and a few new ones, come out to the max. This made for an interesting day as I could not take care of myself. I had to lean on my husband to get me anywhere in the house. It was especially fun when MS bladder urgency needed me to be to a bathroom in record speed. Man, I owe him big for the help he gave me during those “emergencies”.
Unfortunately, my medication for MS, which has improved my daily life tenfold since I’ve been on it, also makes me more vulnerable to COVID and any ailment taking aim at my immune system. I am fully vaccinated and boosted but the effectiveness of the vaccine is greatly reduced in MS patients on certain treatments – Ocrevus being one of them. So, you roll the dice a bit and let the cards fall where they will while being as safe as possible.
I am receiving my 2nd infusion of the year in a little over a week and to say I am ready becomes more and more of an understatement with each passing day. I continue to stay pretty active, in MY way, hoping to keep the fatigue as limited as possible. Of all of the symptoms I experience year-round but more so when I’m due for an infusion, fatigue is by far the most debilitating. It never ceases to amaze me that I will be SO tired over absolutely nothing. I walked to the kitchen. Oh man I need a break. I stared at my iPad for an hour, I better lay down. Hmmmm, I would love a snack but walking to the pantry and throwing something together seems way too daunting. It is also the hardest symptom to explain to those around me. I’ve learned how to do my best to explain it or to simply not try. I am positive better days are always right around the corner.
Until then, I will patiently wait to be bright eyed and bushy tailed. And medicated.
I sincerely hope you are all safe, healthy and living your best life.
As always, I am sending much love 💜
12 thoughts on “Its Been A While…”
Thanks for the update and so very sorry about catching covid. I didn’t know how it could affect your MS. I learn so much from you and appreciate you sharing your journey with us. I am sending you so much love, light, and positivity.
Thank you! Its been quite a ride the last couple of years eh?! I hope you are well and I know Ryan and I would love to see you soon! Stay in touch!! Sending that all back at you too 💜
Lisa, I have so much admiration for you and your family for battling this terrible disease!There are so many times when I have a bad day that I think of you and what you’re going through.What I love the most about you is your crazy sense of humor-gotta have it to get through this life!You are always in my thoughts-so glad we’re friends❤️!
Thank you so much! I agree, a sense of humor is absolutely crucial!! I am so grateful you are in my life too!
P.S.-I think of you on good days too😀!
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Hang in there Kiddo! We are challenge daily yes. But we are an example for those “healthy ones” that if we can fight through this and smile. What do they have to complain about? Frizzy hair?
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Thank you….I know we can! I hope you are feeling well too 💜
Hi Lisa – it was so nice to read your blog and hear how you’re doing. You’re one of the strongest people I know and I’m always amazed at your optimism. Keep taking care of yourself and sounds like Ryan deserves a HUGE kudos for being who he is too! Love you girl!!Helen
Thank you Helen – that is very sweet! You are a very strong person also…..we gotta stick together 💜 Love you forever!
As always, Lisa, amazing insight for all of us who love you so much💗. You are such an inspiration with your strength, humor, and positive attitude! Thank you for keeping up your blog – I’m sure you have an impact on many people who share your challenges- including their family and friends 😍
Lisa, you are amazing.! Your courage is inspirational.
The burden of this disease is difficult, more than anyone can know. The times I have spent with you have been witty, warm and fun. Your spirit is strong, please keep inspiring.
I am at my first day back at work after Covid sidelined me last week. Glad you pulled through. And, yes, fevers with MS are the absolute worse. I wish you the very best.