Fiercely Independent Pam

Tag: power wheelchair user

  • An Awesome Accessibility Adventure in My Backyard!

    So, it has been a hot minute since I’ve posted. I’m learning that I need to take a day or two off from all things digital each week to help rejuvenate my creativity. I had an amazing weekend with my college roommate and her wife! It is amazing to be with people that you know do not see you as a burden or get frustrated with your mobility/health needs. Accessibility helps tons too! I wasn’t sure what direction this post was going to go, but I realized that I wanted to share my adventures in accessibility more than anything.

    I am still non-weight bearing because of my hip injury so I wasn’t sure how we were going to get out an about this weekend. Friday and Saturday were filled with great food adventures and quality time spent together. We managed to get out by using my manual (non-custom) wheelchair. Relying on Lyft rides to get where we wanted to go, I was pleasantly surprised that the drivers, with only one exception, helped to put my wheelchair in the trunk. While wheelchair accessible ride-shares are not available in my area, their help made us getting out possible.

    We had planned to go to a local kite festival on Sunday, but a coastal storm canceled those plans. I already hired a wheelchair accessible van for Sunday so that I could bring my power wheelchair out for the event. We switched gears and decided to go to the mall.

    I realized I haven’t been shopping at a mall in at least six years. It was great to get around and be able to do some in person shopping. I found the mall and most stores to be very accessible. Most paths were wide enough for my wheelchair and people were friendly and helpful. It helps that this is still what I would consider a “newer” mall and built with accessibility in mind. The bathrooms were great and even had many “family style” restrooms that provide more space and adult friendly changing tables.

    The real excitement was being able to go bowling at the “fancy” high tech bowling alley at the mall. We checked in and inquired about accessible lanes and without a blink of an eye, we were set to start bowling. I used a ramp type thing to push the ball down the lane while staying in my wheelchair. There was a learning curve for sure and we even figured out how to put the bumpers up for me (and only me) to compensate for the learning curve. There was no fuss about it being accessible and my needs didn’t hinder my friends playing either. This is true accessibility!

    The only drawback to all this accessibility was the cost. Wheelchair transportation is not cheap and having no other options is tough. We must fight harder and advocate for total accessibility by having transportation available for wheelchair users. There are noble people and local organizations that are trying to make this a reality. What options exist by you?

    I loved my adventures with my friends this past weekend. Accessibility allowed me to fully take part in the fun! My hope is that everyone who needs access to fun adventures, which is everyone, gets the chance to make this a reality. This needs to happen not just for special days, but as the norm.

    Getting ready to get a strike!
    Core Memory
    Need to perfect my form!
    The very cool food delivery robot!

  • 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.