Fiercely Independent Pam

Tag: power wheelchair user

  • Health Update: A Setback or Reboot? My Latest Adventure

    A setback is just another word for reboot. I could say it is something negative, as it seems like everything is against me at times, but I am choosing to see it as an opportunity to reboot. That is, my cardiac rehab plan was going so well, but something unseen must have been wrong.

    Last Tuesday night, when I was getting ready to go to bed, I stood up from my wheelchair to place an insulin needle in my sharps container. I remember that I didn’t “feel well” aka, my blood pressure was dropping, and next thing I know, I was waking up on the floor. I was fairly confident that nothing super emergent was going on, but I had incredible pain in my hip, neck and back. I knew this meant that I needed to go to the ER and get checked out. So, I called the ambulance to help me get up and bring me to the ER.

    The ER ran scans of my head and neck, as well as X-rays of my pelvis. Nothing was out of the normal range for me, so they sent me home. I knew this fall would be a setback for my progress, but resolved to continue to trust the process. I got home around 1:30am and had a very uncomfortable night.

    The next morning, I planned on having a quiet day to recover. I made up my mind that I wanted to follow up with my orthopedic doctor about my hip. I was excited to get an appointment for the next day. Not a setback, but progress… My appointment was with a PA that works with my hip orthopedic doctor. He was wonderful but had unfortunate news- he was fairly certain that I fractured my hip and need to be completely non-weight bearing until I could get an MRI and figure out next steps. Another setback for sure, as if there is a fracture, I will require surgery!

    So, I am mastering transferring from my wheelchair without putting weight on my left hip/leg. This “setback” has reminded me of how grateful I am for my wonderful power wheelchair that gives me freedom, even in unknown times. I am also in a holding pattern, waiting for an appointment for my MRI, with several implanted medical devices, clearance for a MRI takes some time!

  • I’m Off to See the Wizard: A Journey to OZ?…

    Well, a lot is happening here! I might not be on the Yellow Brick Road, but I feel like I’m riding in Cinderella’s carriage. For the first time, I am using a car/van service that allows me to bring my power wheelchair to MUSC. It wasn’t a cheap decision, but it’s exciting! I’m on my way to meet my “Wizard” the one is supposed to make everything ok! That is, I am finally seeing a POTS/Dysautonomia Specialist. He only started in mid July and I was one of the first to get on his schedule.

    My Wizard is DR. JOSE LOPEZ CASTELLANOS, a neurologist at MUSC. My wish isn’t for a brain, heart, courage, or even a way home, but a plan for treatment for the giant group of symptoms. Ever since I was 12 years old, I was passing out for “no good reason.” I’ve always had problems with temperature regulation, as well as random other symptoms including urinary issues, blood pressure regulation, swallowing, random hives and allergies.

    I’m really trying not to get too excited, after all the wizard was just a regular man. I must realize that not everything can be solved in just one visit, but still the temptation is there to dream about not having symptoms. I realize that this too isn’t going to be a possibility; POTs is a horrible group of symptoms that is difficult to control. No amount of diagnostic codes are going to cure me.

    I want to learn from the wizard. Anything that I can do to improve my quality of life is what I am looking for. It might be a new medication or some exercises. More likely it will be a process of testing ideas and coming back to the drawing board. My goal is to not get frustrated by the process, after all Dorothy found her way home through perseverance.

    I’ll be sure to update you all about my meeting with the wizard. I am hoping I have more to share than just seeing a man behind a curtain.

  • 35 Years of ADA: What This Means to Me!

    It boggles my mind when things are actually younger than me. ADA was passed 35 years ago today. A landmarking case that literally changed the course of life quality for people with disabilities. I remember learning much of my knowledge of ADA from my special education courses in college and graduate school. Never in my wildest dreams, would I think that I would need the protection of this act myself.

    I am now an ambulatory wheelchair user. I have a wonderful, but huge, fully equipped power wheelchair. I love it and the special touches I have added to it. It is my main mode of transportation allowing me to go to the grocery store, nail salon, and out to eat (all nearby). I take it on the community bus and it allows me to conserve energy so that I can do everything that I want to do (usually). It came with a learning curve to drive it as well as the huge learning curve of fending for myself in the “wild.”

    I knew, even with the protection of ADA, there were challenges for wheelchair users. I never expected, however how hard it was to get around or even finding a proper handicap assessible bathroom. Curbs and sidewalks can be especially tricky to navigate at times, particularly one I use almost daily that requires me to have to go in the street. Sometimes assessable bathrooms are too small, things are out of reach, or they are used as storage rooms, making them unusable.

    I have a “new set of eyes” when I am out traveling about. I see things that can either be helpful or make things impossible. I now naturally look to find hinderances. It’s hard to not think about this now.

    ADA is about so much more than curb cuts, bathrooms and elevators. It is about empowering people with disabilities to live lives as independent as possible. I enjoy educating others about disability rights, and know this will be even more important when I finally get a service dog and we are out an about. Discrimination is high against service dogs access in some places. I know my patience will be tested.

    Anyway, I am grateful for what ADA has accomplished, but we need to remember this is not the finish line for people with disabilities. More work needs to be done to truly create a more assessable country and hopefully in doing that we will see even more changes around the world.

    As a special education teacher, I chose to fight for my students and make sure they were receiving anything they were entitled to. I no longer work in the field, but will never stop fighting for what is right for people with disabilities- I just never thought I would be fighting for myself.