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.
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