Fiercely Independent Pam

Tag: MUSC

  • What’s Happening? Some Great Updates of Events in My Life…

    It’s been a hot second since I provided some updates, so I figured I’d try to wrap them up in one post. First and foremost, I have been here at home for more than three weeks, which is a record for me in 2025. I’ve been using this time at home to organize and put away some stuff in my apartment as well as tackling a big to-do list.

    I’ll attempt to organize my updates somewhat chronologically, but I’m definitely not perfect at that. I’m finally back to offering technology help in forms of a weekly class as well as 1-1 tech desk help twice a week. In total it’s about 4-5 hours of my time and it has a big impact on the community.

    Additionally, I am spearheading a new endeavor of a Community Newsletter. I am beginning slowly, offering it quarterly, with hopes to bring it to a monthly thing. The hardest part has been asking staff members for their input in their areas. I was told that the teacher in me is good at giving homework! We are also getting a new wi-fi setup soon, so that will be a big project for me.

    Continuing to look forward, I will be at MUSC on Monday (VERY bright and early) for 2 procedures on my bladder to hopefully determine what is causing my issues there. I will provide updates afterwards on Monday. This weekend I will also be collecting data for this procedure to help give even more information about treatment plans.

    For other health updates, I am happy to report that I am almost off all medications for high blood pressure, as I have been “bottoming out” and trending more towards a low blood pressure, which is my norm. So in addition to the compression socks, I have added a back brace/abdominal compression/binder type device to prevent blood from pooling in my lower abdomen or legs. More on this great product to come.

    I am continuing my cardio-rehab plan by adding 3 minutes to riding the bike each week, so I am currently at 13 minutes. I am excited to report as well that the new executive director has agreed to put a television in the room where the bikes are, this is exciting and will help for sure as I work towards my goal of 45 minutes continuously.

    I hope you were able to catch my videos of me using the Zeen, a new mobility device that I am hoping to get to help me rely less on my wheelchair while also giving me opportunities to strengthen my leg muscles. Check out these video updates on my fiercelyindepedentpam facebook page. My sales representative as well as my nurse advocate is working hard at figuring out the needed insurance information to get this covered. The dysautonomia specialist at MUSC (aka the “Wizard”) has actually seen and tried out the Zeen and believes that this would be a big help for me. He has offered to write a letter to the insurance company in addition to the necessary prescriptions.

    In other updates, I am working on getting some brand ambassador/affiliate work with some companies where I really believe in their mission. You will see some posts about these products that have positively impacted my life. Please share these with anyone who might benefit. I appreciate the support. If you aren’t into shopping, just feel free to ignore these types of posts, but maybe you will see something that will solve a problem for you or someone you care about.

    Please know that I appreciate your support of this blog and my social media presence in general. Please help me spread these updates and my journey with others that might be interested. I want to spread my work to as many people as possible.

  • 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.