Fiercely Independent Pam

Tag: Don’t Let the Hard Days Win!

  • Finally Progress is Being Made: New Appointments and Staying Home!

    After a long time of being in and out of the hospital since the end April, I finally am feeling more like myself, getting stuff done, and most exciting of all: I finally got an appointment with the dysautonomia specialist (neurologist) at MUSC. It’s not until August 27th, but still that is less than a month away! I have been waiting for his calendar to open up since it was announced that he was starting at MUSC. Major progress milestone!

    I’m really hoping that he has some ideas about what I can do to treat my dysautonomia/POTS/Neurocardiogenic Syncope/Orthostatic Hypotension. Wow, that’s a mouthful! I am trying not to get my hopes up too high in case he brushes me off, but am confident in the care MUSC provides.

    Until then, I am plenty busy with other appointments- both in person and virtual. I am so thankful that I am able to stay organized and on top of my appointments, as it’s a hot mess when I am not on top of them.

    In other news, I am feeling like a master at self-catherization. I have found a catheter that I really like, got them delivered, and can even cath almost blind(without a mirror) while on the toilet. This is so much easier, cleaner, and more independent than cathing on my bed! The true test will be when I am out and about for 3 appointments at MUSC this Wednesday.

    I also received a nice letter from the hospital about the progress of my formal complaint regarding the care I received from 2 different providers at a recent hospital stay (See https://fiercelyindependentpam.com/the-need-for-trust-in-the-medical-world/) for details about that adventure! The hospitalist medical director sent the letter and indicated that an investigation was completed and the providers were “schooled” on what went wrong. I have a call in to the medical director to discuss this further.

    In other worlds of my life, I am excited to help welcome a new Executive Director for my community. I met with her individually on Friday to introduce myself, share what I do with the community, as well as any thoughts and ideas I had. She seemed to understand my concerns and thoughts. This is major progress for our community. I was impressed with her take on the community thus far. I am genuinely praying that she will stay and make our community stronger!

  • 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.

  • Finally, Good News- Shunt Updates…

    Well, previously I posted about my shunt/IIH/high pressure symptoms and issues. I had to wait a week to get the lumbar puncture (LP) done because of being on blood thinners and dealing with the weekend. Interventional radiology (IR) performed the LP on Tuesday and the opening pressure was indeed high. I knew it was! Also, they found high levels of protein in the spinal fluid (CSF).

    My local neurosurgeon was in this morning and developed a plan. The shunt is going to be readjusted to a lower setting so it drains more and go back on diamox (ick!). I need to follow up with ophthalmology asap and setup a new ct and appointment with neurosurgery.

    Not sure what is happening about the high protein levels, but it might just be an incidental finding, although I’ve had it before. I am just beyond ecstatic that the shunt doesn’t have to be replaced at this time. I really couldn’t wrap my head around another surgery at this point and/or the impact it would have on my hairstyle!

    Now I just wait… for neurosurgery to readjust my shunt, which can be done bedside with a cool magnet thingy, and for the final word on discharge. I am so looking forward to being home and in my community. I have more follow up appointments than I’d like, but that okay by mean if it means I can sleep in my own bed and do my “thing.”

    My bed at home, waiting for me!