Fiercely Independent Pam

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  • 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.

  • Pain, Pain, Go Away: Attempting to Quell the Monster!

    Pain is a force to be reckoned with. Sometimes you can prepare yourself for the pain. Surgeries or the beginning of an illness send signals to your brain that pain is coming. Other times, like after an injury or when something happens quickly your body can’t prepare itself but still you know where and why the pain is present. Nevertheless, pain is a monster that can be difficult to quell.

    Then there is the other kind of pain. The ever present reminder that your body is not normal. Whether it be a headache, backache, stomach/abdominal pain, or leg pain, chronic pain is a monster at a whole different level. Like a “friend” who clings to you, regardless of what you do to “shake” him off. A popped Tylenol or heat/ice pack may make him “shut up” but he’s still there clinging to you.

    Each morning you wake up and check to see the status of your clingy “friend.” Sometimes you think it’s clear and you begin to celebrate, only to find that he’s not only present, but brought more clingy people.

    I think it’s important to note, that people with chronic pain do an excel at “masking” their pain, and you do not know they are in pain simply by looking at them. The pain is always there, sometimes it’s a good day or even an hour, but there is always an expectation of payback for that good time.

    Chronic pain is something I struggle with each day. While it’s mostly in my head/back/abdomen/leg, it can be present anywhere. It exhausts me. Sometimes, the only thing I can do to quiet the force is sleep. I’ve tried injections for my back and head. While I enjoyed telling people I got Botox, I didn’t see great results. I now give myself 1 injection a month for chronic migraines and another once a week for Rheumatoid Arthritis.

    Along with the injections, I supplement with ice/heat as well as some minerals like magnesium.I also use braces or compression garments that seem to help. I try very hard to not take pain medication on a regular basis, unless I feel that I have lost the battle and need to get relief.

    Pain medications are funny things. Not only to you have to practically promise your first born to get a prescription, but once you have a prescription you are viewed as a “user” if you actually take them. I am changing my pain management care from a medication free practice (didn’t know this at the time of starting with them), to a mixed use type of practice and hoping for the best.

    I hate taking pain medications! Besides the side effects, I feel like I have given up. I hate that I end up in bed anyway. I especially hate asking for them in the emergency room or hospital setting.

    So, what are we to do? Chronic pain is here to stay. I can accept my clingy “friend” or chase him away with pills that leave me feeling worse than before at times. I choose to fight this battle, using meds only when I need a “time-out” to quiet the monster.

  • 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