Fiercely Independent Pam

Tag: appointments

  • A Busy Week of Ups and Downs and LOTS of Appointments!

    Spoiler alert- LOTS going on! This week was full of twists, turns, and appointments. Some good news, some complications, and of course a lot of smiles!

    Monday brought me to my second home, MUSC, for an appointment with a spinal specialist to determine what, if anything, can be done for my back and neck. It also served as a follow up on my L1 compression fracture. The doctor was excellent and had some ideas for all of my issues. He recommended a kyphoplasty for the fracture since, while it is still stable, it’s not healing well. If it is going to happen, it will be done at the main hospital by interventional radiology, but a consultation is necessary.

    Monday also brought an unexpected ER visit upon the guidance of my home health nurse. The hematoma that I ended up with at my last hospital visit was looking bad and angry. The ER wasn’t super helpful but I managed to get an antibiotic as well as a referral for wound care.

    Tuesday was a day of appointments at home. I had PT, OT and an appointment with my medical advocate. I also had a GREAT conversation with PAALS about next steps in regards of “my” service/assistance dog. I am ecstatic to see what the future holds for this area of my life!

    Wednesday was a self-care day! I had my hair cut and colored by my favorite stylist, Amanda. I shared her a smile from Seeds of Happiness with her and she was super excited to share it with her son! I also made a TON of phone calls trying to catch up with scheduling new appointments and follow ups.

    Thursday was a tough day, I really struggled to get up and shower, needing to sleep for two hours afterwards. I had an appointment in the afternoon with the nurse practitioner at my pulmonologist’s office. The appointment was intended to be a follow up for the nodule that was discovered on my lung and the follow up CT scan. The nodule couldn’t been seen because the scan showed pneumonia. I was put on an additional antibiotic (my third), nebs, and Musinex. The bright spot of the day was getting to see my nephew when my sister in law drove me home.

    Friday afternoon was my long-awaited wound care appointment. I didn’t know what to expect and what would happen moving forward. I had a 1pm appointment and was taken right back. The nurse who started the process was amazing! She took my complicated medical history, examined my wound, and set me up for the doctor. Then, the doctor decided that the wound needed a full debridement. This process was probably one of the most painful experiences I have had despite the use of lidocaine. It was miserable, but necessary. He also recommended the use of a wound vac (to be started at my appointment next week). I will visit the wound care clinic weekly for the foreseeable future and then home health will touch base weekly as well.

    Unfortunately, this week made me cancel a lot of plans because of not feeling well. I hate that sometimes it comes across as flaky. I hate even more that I miss out on good things. I used to say that at some point this will pass, but I’m not thinking that will happen. Until then, I will keep smiling, hoping, and praying!

    Me and Amanda sharing a Seeds of Happiness smile!

  • 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.