Fiercely Independent Pam

Tag: POTs

  • Health Update: A Setback or Reboot? My Latest Adventure

    A setback is just another word for reboot. I could say it is something negative, as it seems like everything is against me at times, but I am choosing to see it as an opportunity to reboot. That is, my cardiac rehab plan was going so well, but something unseen must have been wrong.

    Last Tuesday night, when I was getting ready to go to bed, I stood up from my wheelchair to place an insulin needle in my sharps container. I remember that I didn’t “feel well” aka, my blood pressure was dropping, and next thing I know, I was waking up on the floor. I was fairly confident that nothing super emergent was going on, but I had incredible pain in my hip, neck and back. I knew this meant that I needed to go to the ER and get checked out. So, I called the ambulance to help me get up and bring me to the ER.

    The ER ran scans of my head and neck, as well as X-rays of my pelvis. Nothing was out of the normal range for me, so they sent me home. I knew this fall would be a setback for my progress, but resolved to continue to trust the process. I got home around 1:30am and had a very uncomfortable night.

    The next morning, I planned on having a quiet day to recover. I made up my mind that I wanted to follow up with my orthopedic doctor about my hip. I was excited to get an appointment for the next day. Not a setback, but progress… My appointment was with a PA that works with my hip orthopedic doctor. He was wonderful but had unfortunate news- he was fairly certain that I fractured my hip and need to be completely non-weight bearing until I could get an MRI and figure out next steps. Another setback for sure, as if there is a fracture, I will require surgery!

    So, I am mastering transferring from my wheelchair without putting weight on my left hip/leg. This “setback” has reminded me of how grateful I am for my wonderful power wheelchair that gives me freedom, even in unknown times. I am also in a holding pattern, waiting for an appointment for my MRI, with several implanted medical devices, clearance for a MRI takes some time!

  • My Meeting with the Wizard: An Adventure in Dysautonomia

    I did it! I met the wizard- he came in the form of a Dysautonomia specialist at MUSC. (see here for more details)He met with me for almost a full hour. He explained how picky he is being choosing patients so he can do the most good. I felt lucky to be pat of the “unlucky’- sick enough to see him.

    We talked about my symptoms- I was glad to have organized all of them ahead of time. We also discussed previous diagnoses as well as previous testing, like my tilt table test in 2014. He seemed to know what I was going to say before I said it, especially in regard to symptoms.

    Then came the next steps: a skin biopsy for small fiber neuropathy, medication review and management, as well as a focused exercise plan to build up standing tolerance. All of this seemed to “click” with me as the wizard said it, especially the idea of small fiber neuropathy vs. dysautonomia.

    I have never heard of small fiber neuropathy before but it, not dysautonomia may be my culprit. It causes several issues with touch, temperature, pain, and even some bladder issues. All of this made sense.

    Regardless, he plans to do a full round of dysautonomia testing once he finishes building his “lab.” In the meantime, I’m to focus on my blood pressure, keeping a log as well as raising the threshold for medications(keeping my blood pressure a little higher than normal so that when I stand up, it doesn’t bottom out). Reintroducing some salt into my diet to keep me from bottoming out and beginning a focused cardio exercise plan that gradually introduces standing exercises.

    It’s a lot of work on my end, but I’ve never stayed away from hard work, and believe I’ve had the power all along, like Dorothy. Now I have learned that the Wizard isn’t just a guy making smoke behind a curtain, but a real human that has done his “homework” of sorts on the puzzling condition of Dysautonomia.

    Oh! and the best part is that the Wizard is willing to do virtual visits as much as possible, which is very exciting for me. As much as I love traveling in Cinderella’s Coach, I like not spending the money or the time to travel to Charleston.

    “You’ve always had the power, my dear, you just had to learn it for yourself.” — Glinda

  • I’m Off to See the Wizard: A Journey to OZ?…

    Well, a lot is happening here! I might not be on the Yellow Brick Road, but I feel like I’m riding in Cinderella’s carriage. For the first time, I am using a car/van service that allows me to bring my power wheelchair to MUSC. It wasn’t a cheap decision, but it’s exciting! I’m on my way to meet my “Wizard” the one is supposed to make everything ok! That is, I am finally seeing a POTS/Dysautonomia Specialist. He only started in mid July and I was one of the first to get on his schedule.

    My Wizard is DR. JOSE LOPEZ CASTELLANOS, a neurologist at MUSC. My wish isn’t for a brain, heart, courage, or even a way home, but a plan for treatment for the giant group of symptoms. Ever since I was 12 years old, I was passing out for “no good reason.” I’ve always had problems with temperature regulation, as well as random other symptoms including urinary issues, blood pressure regulation, swallowing, random hives and allergies.

    I’m really trying not to get too excited, after all the wizard was just a regular man. I must realize that not everything can be solved in just one visit, but still the temptation is there to dream about not having symptoms. I realize that this too isn’t going to be a possibility; POTs is a horrible group of symptoms that is difficult to control. No amount of diagnostic codes are going to cure me.

    I want to learn from the wizard. Anything that I can do to improve my quality of life is what I am looking for. It might be a new medication or some exercises. More likely it will be a process of testing ideas and coming back to the drawing board. My goal is to not get frustrated by the process, after all Dorothy found her way home through perseverance.

    I’ll be sure to update you all about my meeting with the wizard. I am hoping I have more to share than just seeing a man behind a curtain.