Fiercely Independent Pam

Tag: Charleston

  • 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.

  • Appointment Updates: I Finally Escaped in a Car!

    So it begins… On Thursday I had my first appointment at MUSC in Charleston. This kicked off a slew of appointments for the next couple of weeks. Thursday was an appointment with ENT (sinus) and Tuesday is an appointment with urology and then Wednesday is with the “Wizard” for dysautonomia.

    Charleston is over two hours away and always full of traffic. I am blessed that for now, my niece is able to get me there and back. I love our adventures and talks in the car. Unfortunately, however, with her driving, it means that I am unable to take my wheelchair, which makes the trip an exercise as well.

    The ENT appointment wasn’t too exciting, except to actually see my hole in the septum and how angry it really is. This is causing my regular nose bleeds and sometimes sinus infections. He obviously doesn’t recommend surgery, but encouraged me to try a new gel spray to see if I can calm the irritation down some. Also, my regular use of oxygen is not helping matters, nor is my need for blood thinners.

    I am looking forward to the urology appointment on Tuesday. I am hoping to come up with a plan to address both the urgency issues I am having as well as returning to self-cathing. Unfortunately, I believe this is my reality.

    I have a surprise for the “Wizard” on Wednesday. I am going to bring my Zeen to show him how well I am doing with it. I think it’s going to be a little bit difficult to manage getting it in the car for the first time, but it will be so worth it. I also have big plans with my niece’s help, to customize my Zeen so it’s more “me.” Right now it’s plain black, but that will be corrected this week!

    I also have an endocrinology video appointment on Wednesday. I have really appreciated working with MUSC for this speciality because they are so knowledgeable and able to address my diverse needs of adrenal insufficiency, diabetes, and my growth on the pituitary gland. I could not find someone with that knowledge here in the Grand Strand.

    My week finishes off with another round of IVIG here in my apartment. I kinda look forward to it because I am able to plan to get some tasks done that require me to stay in my recliner. This week I think I am finally going to attack my shredding pile.