The rush before the holidays used to be insane for me! When you lead a Catholic School, you literally have to celebrate everything in the month of December and the season of Advent. Saint days, concerts, surprise visits, Santa landing on the roof of the school, the Gingerbread man running off his tray… EVERYTHING! It’s so much fun, but exhausting. I miss it- A LOT! Now that I am living in senior housing, we have a lot of activities for the Christmas season. I am enjoying finding time to share talents with others. It also means a lot of doctor’s appointments in a short amount of time because offices are closed a lot during December for their own activities.
So, I’ve been busy with appointments. BIG appointments. I feel like I am past the point of going to appointments to survive and now finding ways to thrive and prevent bad things from happening. Yesterday, I had my annual brain MRI for my V/P Shunt and to also take a peek at the pituitary tumor that lives in my brain. The MRI is less than comfortable since they have to not only stick you deep into the MRI machine, but also place a cage like thing over your face and head. It took about forty minutes inside the machine, and really the only thing I ever think of doing is praying.
Yesterday afternoon, I also had a Telehealth with the Dysautonomia specialist at MUSC (AKA “The Wizard”) He was his kind, understanding, knowledgeable self. We talked about the skin biopsy I did in October, which was very positive at all three sites for small fiber neuropathy. Still trying to learn what all that means. We discussed the need for me to pick up the cardio rehab program again and the frustrations of trying to get the Zeen approved. We changed a few medications to help prevent my blood pressure from bottoming out. He invited me to reach out if I needed anything but scheduled a follw up for spring time.
Today, I made the trek down to MUSC for two different appointments, with the first starting at 8:30am, so it was an early morning. My first appointment was with an infectious disease doctor who specializes in risk assessments for future surgery. In my case, I was referred to her by an orthopedic surgeon for possible total hip replacement surgery. She had some grim thoughts about complications with the surgery, stating that while the average risk of infection for someone is around 1-1.5%, my risk was near 10%. She had some ideas to mitigate the risk some including nutritional support, blood work, and nasal swabbing all before the surgery. It’s a scary proposition and I have no idea where I land with it all.
The second doctor’s appointment was my annual appointment with a neurosurgeon about my VP Shunt and IIH. She checked the shunt settings (they didn’t move during the MRI)and also reviewed the MRI. The shunt is doing its job a draining extra spinal fluid away from the brain. We discussed that my recent weight loss and use of a GLP both help reduce the pressure. The next step is my annual torture at the eye center to determine if the optic nerve continues to be affected by the pressure. My hope is that I receive an “all clear” and can stop taking the diamox medication that I hate taking. I have another appointment with a different neurosurgeon soon to review the results of the MRI in regards to the pituitary tumor- which spoilers alert- is growing and secreting hormones at twice the rate it did last year, but that’s a conversation for another day!
So there it is, a weird brain, high infection risk, and blood pressures that won’t behave. I am beyond a hot mess- and just so complicated. I am so fortunate to have MUSC in my life and their expertise and caring nature fit my needs. It’s just a shame that they are over two hours away and require a small mortgage payment to get there and back.
Advent is here! We are all counting down the days until we get to meet our Lord in swaddling clothes lying in a manger. It’s exciting enough, I do not need this level of craziness from the medical world.
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