I work hard to manage my health, but some wins are effortless
I know I talk a big game when it comes to advocacy and setting goals for myself. The great results I achieve may lead some people to think that my efforts are effortless, but of course they never are.
Surprisingly, though, some things in my life with SMA are effortless. They just fall into place behind the scenes. I’m always amazed when those things happen. But if they didn’t, I wouldn’t be able to accomplish everything I do.
Good health has arrived
It’s not just a cliché to say that good things can come from bad ones. I was sick frequently last year. Feeling short of breath is like being attacked by a terrifying enemy. When it happens, wailing sirens go off in my head, and all I want to do is crawl into my bomb shelter. For me, that means quickly being placed on the ventilator in my home and turning on the oxygen.
When I have a bad year filled with many infections, I remind myself of a pattern that I’ve seen for much of my life. Last year wasn’t the first time I faced many rounds of sickness in 12 months. When those horrible periods end, I always experience a resting period of up to two years, sometimes even longer, where I barely get sick at all.
In my eyes, these resting periods are both miraculous and divine intervention. And if ever I needed one of them, it would be now. I know my medical team and I have to work hard and do our parts to manage my health. But there’s a part of this that has nothing to do with me.
I need that divine intervention to work alongside me, and so far I’ve had that in 2023. Since mid-January, I haven’t had trouble breathing for even a single moment.
Two months might not seem like a long time to some of you, but it has meant a whole lot to me. I’ve been able to be productive again. Last week, I started emailing people with ideas for advocacy projects I can make on my computer. Spending dozens and dozens of extra hours on projects wasn’t something I had the energy for last year.
Now that I’m breathing easier and have more ambition, I can’t wait to see what I’ll accomplish!
Nobody can say that I don’t appreciate the amazing respiratory care I receive from my mom and my nurses. Hopefully, with hard work from everybody, including me, I’ll stay healthy. I give equal credit to God for the work he does behind the scenes to give me health so that I can be productive.
Trying something new
When peace enters my life, that’s when innovative strategies are developed.
Last summer, I had two surgeries to remove hundreds of kidney stones, some of them very large. A few weeks ago, my doctor said that the remaining stones are small enough that I can try other strategies besides surgery to get rid of them.
Bodily movement is a major way to pass stones. The question was, how would I get more movement? I’ve explained before how I use a reciprocating gait orthosis (RGO) to stand and take steps, with the assistance of a physical therapist. Still, I want to do everything I can to pass these stones on my own and avoid another surgery.
I needed another way to stand upright, in addition to my RGO, and a family gave my mom an R82 Caribou stander. I describe it as a table with supporting straps that can slowly tilt your body into a standing position. I’m excited to have both the RGO and the R82 Caribou to get me upright and increase my movement. This is another example of doors opening behind the scenes.
People always say that when one door closes, another one opens. I’m hoping that for every door that opens for me, 10 more will open effortlessly for others. How about 10 more drugs like Evrysdi (risdiplam) in the next few years? I believe it’s a realistic hope, and hope is what living with SMA and other rare diseases is all about!
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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