Where I've Been
Catching Up: Life’s Rollercoaster Ride
Hello, everyone! It’s been a while since I last posted, and a lot has been happening in my world—physically, mentally, and medically. I finally went on a much-anticipated trip to Las Vegas with some family members in October. It was my first time flying with my power wheelchair. Although having my power chair while traveling gave me an immense sense of freedom—something I usually lack when I leave my home in Wisconsin—the journey was not without its challenges.
When I fly, I typically use a foldable manual chair. However, due to my limited coordination and arm strength, I need someone to push me around. This often results in me being left behind in places like the bathroom after brushing my teeth because I can’t just wheel myself out. While I relished my newfound independence in a city brimming with attractions and activities, traveling with an $80,000 wheelchair came with its own set of problems.
The Vegas Adventure and Its Hiccups
We arrived in Vegas without any issues. This was because the airport is smaller and less crowded, making the staff more willing to listen to instructions. However, when we got to the skywalk at the Grand Canyon in Arizona, my mom suggested I stand up for some photos. I put my chair in the correct mode, stood up, and we took our pictures. However, I realized it was no longer possible when I tried to move to the next spot while still standing. No big deal, I thought. It’s probably something that needs to be reset with the actuators, which is a common issue with the newer versions of my chair. Fortunately, the rest of the trip went smoothly without wheelchair-related problems.
The Return Home: A Series of Unfortunate Events
The day to return home arrived, and I was boarded early, as is customary for someone with a disability. The TSA agents took my wheelchair, and after everyone else boarded, we found ourselves waiting, wondering why the plane wasn’t taking off. Instead of asking us how to reposition the chair for proper storage, the ground crew started unscrewing parts and even broke a piece off the back. This infuriated the pilot because someone disconnected the jet bridge, affecting the pilot’s allowed fly and ground time. Long story short, I got back home to find that I could no longer fit comfortably in my brand-new wheelchair, which I had received only in August. My hips were being pushed forward by the backrest, my headrest was at an awkward angle, and the part of my backrest with the side supports was no longer attached correctly, causing everything to shift.
It took a month to sort this out, and yet, my new chair still doesn’t feel the same as it did initially, and I can’t figure out why. On top of that, I’ve been trying to get a new medication for my Crohn’s disease since October. Despite dropping my commercial insurance due to the significant hassle, Medicaid is still giving me the runaround. They want the hospital to bill as if it were a clinic setting, but the outpatient infusion center is in a hospital, so the hospital is refusing to bill the way Medicaid wants. Medicaid suggested home infusions, but when asked for a list of pharmacies or infusion centers that accept Medicaid, they admitted they didn’t have one. I’m stuck in a catch-22 because many newer medications require initial doses to be administered via IV before switching to at-home injections. So, whether I continue fighting for this medication or not, the process remains the same.
Mental and Physical Struggles: A Tough Journey
I’ve also been grappling with mental challenges as I’ve reached a point where I need more assistive devices like Hoyer lifts for safe transfers. This is partly because my caregivers and I are aging but also because I’ve lost a lot of strength due to inactivity from Crohn’s disease. Additionally, the aging process is more accelerated in people with CP compared to able-bodied individuals. Using these assistive devices brings my physical limitations into sharp focus. While we can navigate most of my apartment with the Hoyer lift, my shower is one place it cannot access. The more people who need to use the Hoyer lift, the less I get to bathe. This struggle is particularly painful due to childhood events that prevented me from maintaining regular hygiene. Situations like this drive me to the brink because, while it’s not my fault that the bathroom is inaccessible, there’s nothing I can do immediately to fix it.
Dietary Challenges and Health Issues
In addition to the struggles mentioned above, I was on the FODMAP diet for about a week and a half, which led to such painful bowel movements that there’s now blood where there shouldn’t be. Needless to say, I’m a bit of a mess right now. I apologize if my absence worried anyone, but I’m doing my best to practice appropriate self-care.
Conclusion: Navigating the Storm
Despite all these challenges, I’m hanging in there. Life has thrown quite a few curveballs my way, but I’m determined to navigate through them. Thank you all for your patience and understanding. Your support means the world to me, and I hope to be more consistent with my updates moving forward.