Fiercely Independent Pam

Tag: Don’t Let the Hard Days Win!

  • 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!

  • A Shout Out- Saying Thank You to My Healthcare Team at Grand Strand Hospital

    I am a big believer of acknowledging when people go above and beyond what is expected of them. Sometimes, it’s not a big gesture or lifesaving heroic act, but a quiet voice that whispers, “I believe you and want to help you” that makes all the difference.

    I am currently in the hospital and today is day nine of being here. Nobody enjoys being in the hospital, but that isn’t anybody’s fault. For the most part, nurses, doctors, and all the other healthcare workers really try to make a stay decent. It hasn’t been all smooth sailing, but there are many individuals that are allowing may stay to not be so hard.

    First off, a special shout out to the nurses that I have met and helped me thus far. From the emergency department, to the ICU and now on the regular floor, then nurses have been dedicated, knowledgeable, and generally enjoyable to be around. Whether it was a good conversation in the middle of the night(and there were many), careful administration of medications, or just interest in what I was doing to pass the time, “my” nurses help keep me positive despite the health challenges I face. It isn’t easy to find the time to connect with a patient in light of the demands of the job, but it is so appreciated.

    Secondly, the doctors and providers that have steered this latest visit have been top notch. My biggest hurdle on my personal healthcare journey, is when I am not believed, especially by healthcare providers. I have an odd sense about my body and can always tell when something isn’t right. I so appreciate the providers that trust this gut feeling and explore possibilities, even when the presentation isn’t typical. Today, my doctor came in my room after having a procedure and took the time to acknowledge that my journey is difficult; that made a huge impact on me.

    Finally, the “other” healthcare workers that pull together to make time spent in the hospital not so ,miserable. This includes the housekeeping staff that say, “Good Morning” instead of avoiding contact and listening to their AirPods. Also the techs who just know that an ice cream will help in that very moment or are willing without complaining to clean up a mess or change a bed without being asked. The smiles from transport workers and dietary departments go along way too.

    I am sometimes guilty of only acknowledging when something goes wrong. This visit things did go wrong at times, but someone always made it right by listening to me. Being chronically ill, means a lot of time is spent in the hospital. I see good, bad, and ugly, but this visit (which will hopefully be over soon), has been worthy of a BIG Shout- Out!! I wish I kept a list of names of individuals that made this possible, but for now, I say Good JOB and Thank YOU!