mamabunny
DIS Veteran
- Joined
- Oct 11, 2012
- Messages
- 3,837
It's long - it's VERY LONG - I apologize in advance - but a lot has happened.
°O° °o° °o° °o° °O° °o° °o° °o° °O°
So, where was I?
Oh - yes. The Hubs was in the hospital, and things were *not* looking good. I can admit it now, but there were moments when I was so scared, I would just be uncontrollably shaking. Days, then weeks, a month... it felt like a waking nightmare.
And then, everything just worked. Suddenly, everything came together (literally and figuratively) and he was standing, wobbly but tall, next to his hospital bed. About a week later we were headed home, and I was scared to death again, but this time because he was so happy to be home that he did not want to eat the prescribed diet, and he wanted to go everywhere, and do everything, and was almost more unruly than a kindergartener full of sugar.
During this time, we bought a new mini-van. Our daughter was helping me by running errands in it, and a woman rear-ended her. It *almost* totaled the van, even though the air bags did not deploy; the other driver was in a "lifted" late model giant pickup truck, and the amount of damage was stunning. Luckily, our daughter was OK, just very shaken, mad at the other driver for not paying attention (PUT DOWN YOUR PHONES WHEN YOU DRIVE, PEOPLE) and she had a horrible case of guilt because she was driving our new van when it got hit.
So, we dealt with that, and rental cars, and insurance companies, and nearly 4 months later, we got the van back home.
Once he was back to reality, back to work, and released from his surgeon's care, the general consensus in the family was that Mom Needs A Break. (I agreed!) So our Texas-based daughter and I snuck away to WDW for a stay at AKL, where we were so happy to see all of our friendly CMs, and to be "home" again for a few days. This was in early January of 2025.
That trip was hard. As in, I hurt more, and I was just more clumsy than normal. We put it off to my general exhaustion and too much excitement. On the drive home, I could hardly stay awake; the family joked that I didn't get much of a "break" because we were too busy having fun.
After a few days at home, I traveled with our daughter to Texas to stay with her - she had a new-to-her home (she's renting a lovely mid-century bungalow, with a native stone fireplace, and a kitchen that makes me green with envy LOL) and we had a lovely visit; I learned to play D&D (she hosts 2 different games each week) and we ate amazing foods, and I got to visit H-E-B whenever I wanted (IYKYK) and the time was passing all too quickly. Until the night I tried to stand up from the table after a D&D game. It was January 14th, Valentine's Day 2025.
I couldn't stand, because it hurt. It hurt so badly, I sat back down gently, and waved goodbye to everyone as they left, and then I told our daughter that something was really wrong.
I thought that maybe I had sat "weird" or that my legs had fallen asleep. She thought maybe it was just because we had been at the table so long; y'all these people play for hours.
So, she brought my wheelchair around, and I got to my room. I was going to change into nightclothes, but decided I needed to use my rollator to go to the bathroom. My legs still hurt, worse than before, and I was scared - this was not good, I just didn't know what was happening or why.
We were in Austin, Texas - a nearly 8 hour drive to get home, Our daughter put me, her kittens, all of my "stuff" and her work laptop into the car, and started driving for home. I was fine when I was sitting, but trying to stand was increasingly, horrifyingly painful. We agreed that I needed to see my surgeon, that night if possible.
We made the trip in just over 6 hours, and by this time, I knew something was really wrong. We got close to home but instead stopped at the ER where I had met my spine surgeon 5 years earlier. He arrived not long after they checked me in, and after some lovely sedatives (I am so claustrophobic I have to be fully sedated for the MRI) the next time I was conscious was in Recovery, and it was nearly 8 hours later.
My spinal cord was very nearly severed when they opened my back. My surgeon estimated that I had less than 12 hours before it would have been completely severed. They had to remove all of my "original" hardware, and put in more, longer, new hardware.
Recovery was the last time I was even somewhat conscious for nearly a month. Blood clots, a major infection, a suspected stroke (nope, I didn't have one, thankfully. There was enough other stuff going on) and a horrifying reaction to a medication (that we didn't know I was allergic to) was more than enough. I was able to wiggle my toes and bend my knees on command (again, I don't remember any of that) and I lost a tremendous amount of weight; more than 50 pounds. It is not the way to lose weight, let me tell you.
Our daughter stayed by my side nearly 24/7, even through PT/Rehab. Her bosses at Apple were amazing, and made sure she had everything she needed to stay with me. My husband had to jump through some paperwork hoops (and use all of his vacation + sick time) to get time off to be at the hospital, and later help care for me through PT/Rehab, and at home.
Residential PT/Rehab was hard, but with a lot of determination, the staff got me up on my feet, and ultimately walking (assisted) again. My "parting gift" was a fleet of nurses, OT & PT folks, and a delivery of all kinds of medical stuff that would show up at our house starting the following week, and for the next 90 days.
I was finally home on March 31st, 2025. On April 2, our home took damage from a tornado, and our roof was there, but not working. Every shingle was lifted during the tornado, and then slammed back down onto the roof. (it was SO loud!) At first glance, our roof looked fine; then if you looked a bit harder, it was a real mess. Our yard was full of other people's shingles and outdoor furniture cushions and oddly, a bunch of doggy toys from our neighbors back yard. The paint was completely stripped off the walls on the west and south sides of the house. Our neighbors on one side were skipped, but the folks next to them literally walked out of a pile of rubble; they just started repairs today, finally. All in all, it tore a path more than a mile long through our neighborhood, and it was so bad that the Highway Patrol was stationed at every entrance, checking IDs to keep looters and looky-loo's out of our hair for nearly 2 weeks.
But during the tornado, I was stuck - our "safe space" is a small bathroom in the center of our house, that has no windows. The hallway it is on had windows at either end, so I couldn't sit in my wheelchair outside the bathroom - there was a risk of flying glass and debris. There was a connecting hallway that had no windows, so I sat there, scared, stunned and alone while my family rode out the tornado in the bathroom.
It felt like too much. I finally broke down, and after calling a local construction company to come and tarp the roof, and inspect the house to make sure we could still safely live in it, I told our daughter I needed mental health support, and the sooner the better. She performed some kind of miracle, and just hours later I was "meeting" my therapist over a Zoom call. She has been a regular part of my schedule since that day as I continue to work through the trauma of everything.
Encouraged by our Evita here on the DISboards, early summer of 2025 we bought 3 Hyundai Ioniq 5 TVs and traded in our "regular" gasoline-engine cars. All 3 are the Disney 100 edition, and while I have not driven my car yet (family members drive me in my own car LOL) I love it so much. Evita had given me an amazing amount of information about the Ioniq 5 the year before, because she and her hubby drove one. I promptly named my car "Evita" the day we drove it home, and it means even more to me now that our friend is gone.
So, here we are, nearly a year to the day later. I am profoundly grateful for my life, a surgeon who showed up, and daughter and husband who fought for me when I couldn't and who stayed by my side through some really hard times for the last year. My PT and my psychologist. Oh, and a fantastic contractor who put our house back together.
My prognosis has not changed: it may take as much as 3 years to recover from the surgery. I have some lasting issues that I continue to work on in regular physical therapy sessions, and a plethora of assistive devices to help me be more independent. I still get tired very easily, both physically and mentally. My family has put a WDW trip on the books for late spring/early summer of this year, and I am trying very hard to be ready for that. Stay tuned.
So, I will still try and pop in from time to time. But forgive me if I am absent at times; I'm still very much a work in progress.
XO Mamabunny
°O° °o° °o° °o° °O° °o° °o° °o° °O°
So, where was I?
Oh - yes. The Hubs was in the hospital, and things were *not* looking good. I can admit it now, but there were moments when I was so scared, I would just be uncontrollably shaking. Days, then weeks, a month... it felt like a waking nightmare.
And then, everything just worked. Suddenly, everything came together (literally and figuratively) and he was standing, wobbly but tall, next to his hospital bed. About a week later we were headed home, and I was scared to death again, but this time because he was so happy to be home that he did not want to eat the prescribed diet, and he wanted to go everywhere, and do everything, and was almost more unruly than a kindergartener full of sugar.
During this time, we bought a new mini-van. Our daughter was helping me by running errands in it, and a woman rear-ended her. It *almost* totaled the van, even though the air bags did not deploy; the other driver was in a "lifted" late model giant pickup truck, and the amount of damage was stunning. Luckily, our daughter was OK, just very shaken, mad at the other driver for not paying attention (PUT DOWN YOUR PHONES WHEN YOU DRIVE, PEOPLE) and she had a horrible case of guilt because she was driving our new van when it got hit.
So, we dealt with that, and rental cars, and insurance companies, and nearly 4 months later, we got the van back home.
Once he was back to reality, back to work, and released from his surgeon's care, the general consensus in the family was that Mom Needs A Break. (I agreed!) So our Texas-based daughter and I snuck away to WDW for a stay at AKL, where we were so happy to see all of our friendly CMs, and to be "home" again for a few days. This was in early January of 2025.
That trip was hard. As in, I hurt more, and I was just more clumsy than normal. We put it off to my general exhaustion and too much excitement. On the drive home, I could hardly stay awake; the family joked that I didn't get much of a "break" because we were too busy having fun.
After a few days at home, I traveled with our daughter to Texas to stay with her - she had a new-to-her home (she's renting a lovely mid-century bungalow, with a native stone fireplace, and a kitchen that makes me green with envy LOL) and we had a lovely visit; I learned to play D&D (she hosts 2 different games each week) and we ate amazing foods, and I got to visit H-E-B whenever I wanted (IYKYK) and the time was passing all too quickly. Until the night I tried to stand up from the table after a D&D game. It was January 14th, Valentine's Day 2025.
I couldn't stand, because it hurt. It hurt so badly, I sat back down gently, and waved goodbye to everyone as they left, and then I told our daughter that something was really wrong.
I thought that maybe I had sat "weird" or that my legs had fallen asleep. She thought maybe it was just because we had been at the table so long; y'all these people play for hours.
So, she brought my wheelchair around, and I got to my room. I was going to change into nightclothes, but decided I needed to use my rollator to go to the bathroom. My legs still hurt, worse than before, and I was scared - this was not good, I just didn't know what was happening or why.
We were in Austin, Texas - a nearly 8 hour drive to get home, Our daughter put me, her kittens, all of my "stuff" and her work laptop into the car, and started driving for home. I was fine when I was sitting, but trying to stand was increasingly, horrifyingly painful. We agreed that I needed to see my surgeon, that night if possible.
We made the trip in just over 6 hours, and by this time, I knew something was really wrong. We got close to home but instead stopped at the ER where I had met my spine surgeon 5 years earlier. He arrived not long after they checked me in, and after some lovely sedatives (I am so claustrophobic I have to be fully sedated for the MRI) the next time I was conscious was in Recovery, and it was nearly 8 hours later.
My spinal cord was very nearly severed when they opened my back. My surgeon estimated that I had less than 12 hours before it would have been completely severed. They had to remove all of my "original" hardware, and put in more, longer, new hardware.
Recovery was the last time I was even somewhat conscious for nearly a month. Blood clots, a major infection, a suspected stroke (nope, I didn't have one, thankfully. There was enough other stuff going on) and a horrifying reaction to a medication (that we didn't know I was allergic to) was more than enough. I was able to wiggle my toes and bend my knees on command (again, I don't remember any of that) and I lost a tremendous amount of weight; more than 50 pounds. It is not the way to lose weight, let me tell you.
Our daughter stayed by my side nearly 24/7, even through PT/Rehab. Her bosses at Apple were amazing, and made sure she had everything she needed to stay with me. My husband had to jump through some paperwork hoops (and use all of his vacation + sick time) to get time off to be at the hospital, and later help care for me through PT/Rehab, and at home.
Residential PT/Rehab was hard, but with a lot of determination, the staff got me up on my feet, and ultimately walking (assisted) again. My "parting gift" was a fleet of nurses, OT & PT folks, and a delivery of all kinds of medical stuff that would show up at our house starting the following week, and for the next 90 days.
I was finally home on March 31st, 2025. On April 2, our home took damage from a tornado, and our roof was there, but not working. Every shingle was lifted during the tornado, and then slammed back down onto the roof. (it was SO loud!) At first glance, our roof looked fine; then if you looked a bit harder, it was a real mess. Our yard was full of other people's shingles and outdoor furniture cushions and oddly, a bunch of doggy toys from our neighbors back yard. The paint was completely stripped off the walls on the west and south sides of the house. Our neighbors on one side were skipped, but the folks next to them literally walked out of a pile of rubble; they just started repairs today, finally. All in all, it tore a path more than a mile long through our neighborhood, and it was so bad that the Highway Patrol was stationed at every entrance, checking IDs to keep looters and looky-loo's out of our hair for nearly 2 weeks.
But during the tornado, I was stuck - our "safe space" is a small bathroom in the center of our house, that has no windows. The hallway it is on had windows at either end, so I couldn't sit in my wheelchair outside the bathroom - there was a risk of flying glass and debris. There was a connecting hallway that had no windows, so I sat there, scared, stunned and alone while my family rode out the tornado in the bathroom.
It felt like too much. I finally broke down, and after calling a local construction company to come and tarp the roof, and inspect the house to make sure we could still safely live in it, I told our daughter I needed mental health support, and the sooner the better. She performed some kind of miracle, and just hours later I was "meeting" my therapist over a Zoom call. She has been a regular part of my schedule since that day as I continue to work through the trauma of everything.
Encouraged by our Evita here on the DISboards, early summer of 2025 we bought 3 Hyundai Ioniq 5 TVs and traded in our "regular" gasoline-engine cars. All 3 are the Disney 100 edition, and while I have not driven my car yet (family members drive me in my own car LOL) I love it so much. Evita had given me an amazing amount of information about the Ioniq 5 the year before, because she and her hubby drove one. I promptly named my car "Evita" the day we drove it home, and it means even more to me now that our friend is gone.
So, here we are, nearly a year to the day later. I am profoundly grateful for my life, a surgeon who showed up, and daughter and husband who fought for me when I couldn't and who stayed by my side through some really hard times for the last year. My PT and my psychologist. Oh, and a fantastic contractor who put our house back together.
My prognosis has not changed: it may take as much as 3 years to recover from the surgery. I have some lasting issues that I continue to work on in regular physical therapy sessions, and a plethora of assistive devices to help me be more independent. I still get tired very easily, both physically and mentally. My family has put a WDW trip on the books for late spring/early summer of this year, and I am trying very hard to be ready for that. Stay tuned.
So, I will still try and pop in from time to time. But forgive me if I am absent at times; I'm still very much a work in progress.
XO Mamabunny
