Fiercely Independent Pam

Tag: power wheelchair user

  • 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.

  • Catheter vs Power Wheelchair

    Well yesterday I finally did it- I’ve had some close calls and warnings but today I managed to run over my foley catheter and get it all caught up in my wheels. Spoiler alert- all ended up ok with a quick change of the bag.

    So, I was getting ready to load onto the bus for a doctors appointment and was so busy talking to people that I didn’t realize that my foley bag slipped off my foot plate (it was also hooked on at some point). I spun around and then tried to move to get outside and onto the bus when I realized my wheels weren’t moving. I had no idea what the problem was but felt the catheter tugging on my insides. WOW- I quickly realized that it was an issue with the catheter. I tried to fix i myself but couldn’t budge it and of course the 3-4 people that were near, were gone. The bus driver, my hero without a cape, was outside and I flagged him down by waving my arms ridiculously. He ended up on the floor to dislodge the bag, luckily the bag didn’t pop and was recently emptied. I went back to my apartment and changed the bag since it was punctured in a few spots.

    All in all, everything was ok! This experience was a giant serving of “Humble Pie.” My biggest takeaways were don’t take yourself too seriously and no matter how independent I think I am, I will always need some help.

    So now I laugh about this and pay closer attention to the foley falling off my foot plate. With some luck and good medical care, I look forward to the day that I no longer need the catheter. It really is slowing me down. I have learned that physical reminders like a catheter hanging out of me are harder to deal with than non-visible reminders. I struggled with this issue when I had my feeding tube.

    Independence is a great thing, but I will recognize I will always need some help. The level of help needed waxes and wains depending on my medical situation. I am experimenting with the amount of time I have caregiver support. Right now I was able to limit it to mornings only. My mornings are still kinda rough and I don’t want to spend all my energy preparing for the day and have nothing less for the rest of the day. I continue to try to pace myself better and enjoy being able to do more throughout the day without crashing.