HOME-BOUND HAPPENINGS: MY LIFE IN-BETWEEN SPINRAZA TREATMENTS

I knew going into this treatment opportunity that I would have to make some sacrifices. Not the kind where you feel bitter and resentment towards whatever it is you made that sacrifice for. No, not that kind at all. It was the kind of thing where you understood the fine print of said opportunity and were still willing to sacrifice just about anything anyway. But, I digress.

As most people living with SMA can attest to, this time of year is the WORST time of year for germs. People often forget the common courtesy of covering their mouths when they cough or sneeze, pneumonia is apparently “not sick enough” to stay home, and people just don’t understand the danger an illness can be when, after all, “it’s just a sinus infection”. But, for someone with SMA, just a sinus infection could mean a prolonged stay in the intensive care unit. This time of year, my family and I remain extremely cautious. However, now that this drug treatment has come into the picture, we’ve really taken things to the next level.

I guess you could say I’ve always been leniently cautious during the winter months. Of course, I’m very responsible and always do my best to avoid sick people. But, this has never prevented me from going out in public in the past. When I said yes to Nusinersen, though, I knew some things had to change.

I had to cut Christmas Day celebrations short due to germs, I rang in the new year by myself because everyone tends to get sick after the holidays, and I’ve had to bow out of plans with friends. Sure, it has been a little lonely, but I’d much rather be healthy and alone than sick and unable to go to my treatments. So, instead, I’ve started to learn how to become my own best friend. (Disclaimer: I am by no means trying to sound pathetic here. It’s more of like a “hey, look at me go on my journey to self-love!”)

With a lot more free time on my hands, I have been able to accomplish SO much more. I have more energy because I’m doing less for once. My wallet hasn’t been hurting as much because I’ve been staying home (okay, now THIS is pathetic), and I finally have time do things that I’ve been putting off for far too long.

Take my newly designed office you’ll see below, for example. Sometimes I get these creative bursts of energy to act on my love for interior design, and then my mother hesitantly complies to these ideas. So, shout out to my mother and home-bound partner in crime for putting up with my impulsivity and borderline boredom to helpΒ me create a space that truly represents me. And thank you to my grandmother for always having a stroke of luck and winning enough money to buy me a fancy new desk. Love you both so much!

PS- I also had enough time to redesign my blog which I had been meaning to do for…oh, about 2 years. What do you guys think? πŸ™‚

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Chronicling my journey while teaching the world that I have SMA, but it will NEVER have me. Life's what you make it, dare to make it a remarkable one✨

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