Fiercely Independent Pam

Category: Accessibility

  • Here We Go Again: If Only My Body Behaved Itself!

    So, this week was already filled with surgery, appointments, infusions, then I landed in the ER followed by an admission to the hospital! All in the exciting life and times of my body.

    Bright and early Monday morning, I was down at my home away from home, MUSC for a fistula gram. All went well, I got a good nap thanks to anesthesia and the fistula was “ballooned out” and back in working order. I may need follow up work on it, but for now its already looking better.

    All was going ok, but Tuesday brought a slew of issues later in the day. I was just feeling “off” I hate when I say that because I know it’s not really helpful. I often say things like “Something just isn’t right.” Nine out of ten times, something pops later on and it all makes sense. My vision was funky in my left eye and I had a top 10% headache. By 8 o’clock at night, I knew I better go get checked out. So to the ER I went!

    Then of course I heard the bad news that I was assigned a “hall bed”- the worse place to be with a tough headache and light sensitivity, but in the end is was worth it because the doctors admitted me right away and I landed in a room upstairs with little fanfare.

    Things went well, the neurologist was in bright and early and made some medication changes to see if they would help. I also was finally able to get some relief from the headaches. I did however start to notice that my blood pressure was quickly creeping up to a place I wasn’t comfortable with. When I asked the nurse, she dismissed it as anxiety- multiple times. I hate that! When I am anxious, I am aware and will say that I’m anxious, but when I am not and my blood pressure is increasing, please help me! So, by midnight, my blood pressure was in the 200/100’s and they finally treated it!

    Why can healthcare providers decide that they know what is going on more than a patient? I trust providers, but I also need them to trust me and my experiences. Either way I am just glad I made it home today, and despite needing to make follow up appointments, I can get back to living my life again!

    A picture of my raised flower bed with a bright red amaryllis blooming and other plants.
    A picture of my awesome raised flower bed!

  • Medical Appointments: Keeping Them Organized and Finding Ways to Get There!

    I average 5-12 medical appointments a week. This includes home health nursing, tele-healths, traditional appointments with specialists, and therapy appointments. It’s a big time commitment to attend all of these appointments as well as keeping them all organized.

    To stay organized, I use the calendar on the phone/computer as well as a google docs file that includes any appointments outside of my apartment. The file contains the date/time, provider’s name, address, phone number, as well as a place for transportation notes. I find this file so necessary, as sometimes I need to print or send a copy of upcoming appointments to various providers. I have even started to color code some items on the sheet. The bonus of having it as a google doc is that I am able to share it with various people (family) and they can see any changes or updates.

    Transportation is the biggest issue for me to get to appointments. I try to make local appointments on Tuesday or Thursday when the bus is available through my community for appointments. MUSC appointments require the most resources as I need to coordinate them with either my niece, private transportation company, or using UBER. All are expensive options. All of this also requires me to determine what mobility device I am going to use. If I wake up to go to MUSC with my rollator and feel terrible, I am stuck and can’t switch to my power wheelchair. It’s a lot of thoughts.

    Transportation is a huge hindrance to many people’s access to heath care. If you can’t leave your house, you are significantly limited to the type of health care or quality of health care you receive. Likewise, when you are limited by milage or transportation routes, you become limited.

    I am eager to see my Medicaid application be approved and provide needed support for transportation as well as other things. This process for application was very extensive and difficult. I am hopeful that the results will be worth it!

  • An Adventure With My Zeen…And An Appointment Update!

    I don’t often say that a doctor’s appointment is “fun”, but yesterday’s visit back to Charleston to see the wizard (the dysautonomia specialist) was a blast. I knew that in the back of my mind was always the desire to bring my Zeen with me since he was so supportive about getting a Zeen.

    Since I have been working so hard, I successfully brought my Zeen with me to Charleston. With some help from my niece to load it in and out of the car. Using the Zeen in new places was quite the adventure. I successfully navigated the bathroom, elevator, parking garage and more! I even had a couple stop me on our way out to ask how I liked the Zeen as they did a virtual appointment with Zeen to help them determine if it would be right for them.

    While I was with the Wizard, he rounded up the residents and medical students in the neurology clinic and then had me “show off.” I had so much fun talking with them about the difference the Zeen has made in my life in the last month.

    I, of course took notice of the small differences. I enjoyed being able to see the person at sign in and sign out instead of staring at the wall like I do in my wheelchair. Also, I can make it go low and be eye to eye with people sitting down. Its nice to not stare at belly buttons all day.

    I’m not quite sure where I would be on my rehab journey without my Zeen, but I am sure glad that I have it!

    As far as the appointment went, I was given the green light to use the Droxidopia as needed based on my blood pressure in the morning. My goal is to get to 45 minutes of standing exercise, using a combination of seated and standing exercises to train for that goal. He released me for 6 months, but he reiterated that he is always available via messages on MyChart.