Fiercely Independent Pam

Tag: appointments

  • 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!

  • 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.