Living With SMA Type 2 at 49
Last updated: September 2022
You'd think, "OMGosh she’s bedridden or should be."
I have been on my own since I was 28 and have had to many challenges. I was married that year and divorced 9 years later. My ex was abusive, but I finally got the courage to leave and move across the country on my own. I had alway been extremely stubborn so I refused assistance from anyone.
Finding love unexpectedly
You see, I was raised to be independent and I wanted to prove that I could make it on my own and I did. When I turned 41, I decided to move north again near my friends. I met a really great guy, a sweetheart really. We used to hang out as friends, until one day he said he loved me. We started dating and because we both had bad marriages, we didn't rush into anything. All of this time I had been healthy, no hospitalizations, nothing.
On the mountaintop
On my 46th birthday we went away on vacation. He tricked me into looking for moose when he stopped the car at a lookout area with a gorgeous gazebo, that's when I realized we were on a mountaintop surrounded by a beautiful sunset. He asked me turn around and when I spun my chair around he was on one knee with a ring! I asked him if he was serious, he said yes. Then I asked if he was sure and he nodded. That was when I noticed his tears. We were so excited, until there were rumors of COVID.
Postponements due to COVID
My doctors told me to quarantine until it was over...it's still not over today. Fall of 2020 rolls around and we had to postpone our wedding because COVID was really bad here. We decided the following summer that it would happen that Fall. Since I only had two months and it was so close to Halloween, we decided it would be based on Nightmare Before Christmas. I told him I have always felt broken and he loves me anyway.
My first nonsurgical hospital stay
This summer was the worst and scariest we've ever experienced. My father-in-law passed away, and of course I attended his funeral and caught COVID, which became COVID, plus bilateral pneumonia. My first ever nonsurgical hospital stay. I don't really remember much, but my hubby said it is better that way. I was there for two weeks stuck in a hospital bed. By the time I was ready to go, I was unable to drive my chair. I cried even though I knew I hadn't taken my Evrysdi while I was in the hospital.
A new milestone
Well, seven days ago celebrated my 49th birthday and I regained all of the strength I lost. I guess I'm too stubborn to give up!
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