Fiercely Independent Pam

Tag: MUSC

  • 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.

  • My Love Affair with a Hospital: Adventures at MUSC

    Well it’s been a hot minute since I’ve added a new post. I have been busy with health stuff including making a transfer of sorts from a local hospital in Myrtle Beach to MUSC in Charleston. I love MUSC; I love the team centered approach, the willingness to think outside the box, and most importantly that they put patients ahead of profit. I went from needing another brain surgery to “just” needing a tune up of meds. Such a relief.

    So, I said my transfer was unique. I decided that I needed to make a change in care as I was simply spinning wheels at the local hospital. They were making calls and shot and hoping they would work. So, I decided to take a giant leap of faith and discharge from the local hospital and find a way to MUSC.

    Luckily, I have an amazing tribe (See here for a post dedicated to them). My dear friend answered the tribe “bat call” and agreed to bring me on Monday. It was a leap of faith for sure because there was no guarantee that I would be admitted, but I was and here I am! I cannot stress enough the importance of having a tribe- and do not be afraid of adding new people, sometimes they just need to be asked.

    Beyond the excellent care and better food, I love having a team of med students- attendings guiding my care. I hope my case teaches them something too. They all treat with care and understanding instead of the bare minimum just to check off a box. MUSC truly is a special place.

    Now comes my biggest hurdle, transportation. I no longer drive and rely solely on others to get around. Usually for any local trips, I am able to rely on the bus at my community. I also got a text message from a new local company that I recently tried that just purchased a wheelchair accessible van! Of course there is a fee, but I feel like that has opened some doors for me. Never stop looking for solutions.

    Until tomorrow, I am safe, pain is being managed, and transportation will work itself out somehow. It’s much easier to “keep the faith” when you are at a place like MUSC.