Fiercely Independent Pam

Category: Health

  • 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.

  • Trials and Tribulations of My Bladder- The Latest Chapter!

    My bladder is quite obnoxious! After my hysterectomy last April, I struggled to urinate. I was told that it was a “Floppy Bladder” and would not be able to fully empty without the assistance of a catheter.

    So, I learned how to self- cath and actually got quite good at it. Fast forward to January when I was hospitalized for numerous things including a very large kidney stone, a UTI, and a picc line infection. When I got home I required the use of a bedpan and slowly relied less on self- cathing. I thought my bladder was finally waking up and I would be cured.

    The fun only lasted a few weeks because I began retaining urine again and having to cath to be able to fully empty my bladder. In the last 24 hours, I am completing a voiding diary where I chart all this liquid I take in, and everything I am able to get out via urinating or self- cathing. I will then send the voiding diary to my doctor and we will meet to talk about it.

    The biggest challenge right now is that I require a riser on my toilet so that I am able to stand up from the toilet. This riser greatly diminishes the room I would have to self- cath and isn’t really possible over the toilet. I tried to get up from the toilet without the riser and it wasn’t possible, yet!

    I am curious about what the next steps are for my obnoxious bladder that gave me false hope. Until I meet with the doctor, I will continue to brainstorm solutions and rise to meet these challenges!

  • Achieving Goals: Its About Time!

    I have always been a goal oriented person. I like to set goals and work to achieve them. This worked for getting into college, completing a half-marathon, and achieving career goals. I am stubborn almost to a fault and that stubbornness is what makes me persevere through trials when attempting to reach a goal.

    Last fall I wrote a document I called “Why Not Me?” that outlined my 5-10 year goals. I am chipping away at those goals by making smart decisions and working hard. I am determined to make it happen.

    One of the big goals is to befriend/acquire a mobility service dog. This is requiring more patience than I ever imagined, but I know deep in my heart it’s going to work out the way it should. Somehow, someway, I will be sharing a bed with a big lab that loves to work and play.

    Smaller goals keep me going too. Right now I challenged myself to complete the 1/4 mile loop around my building with the Zeen by Easter. I have already completed half of it so I believe I’m in good shape to achieve the larger goal. I really love the Zeen and all that I am accomplishing using it.

    Next steps include getting back on the Nustep (bike) and getting in an out of a car. Both will be a challenge but put me on the positive side of normal activities. At sometime soon I would like to remove the toilet riser as well so that I can get used to a normal height toilet and not be surprised when I am out of the house.

    Behind the scenes, I am also working on financial goals, I have recently finished my Medicaid application. I am also using an AI tool to help me manage my money and try to create an emergency fund as well.

    All of this requires a lot of time and attention, but lucky for me, right now that is something I have a lot of. It’s very unlike me to put myself first, but I recognize that is needed to achieve my goals, both short term and long term.