Category: helpful products

  • Two Different Lives: What a Difference a Shower Can Make!

    Today I did something I haven’t done in years. I took a shower two days in a row. This might seem trivial to most of you, unless you have chronic illness and/or pain, you wouldn’t understand. I am not ashamed to say that usually I can only manage two showers a week, and that is with caregiver help. These showers exhaust me to the point of needing to lie down and sleep immediately after most of the time.

    With the help of my medical team, we secured additional services to help with the showering. Mainly this consisted of an OT to teach me “tricks” that conserve energy while showering. Last week was a “dry run” and we problem solved some issues. I ordered a new shower caddy to limit the amount of twisting and bending to grab bottles, soap, and washcloths. The OT also shifted my handheld closer to my shower chair. I am still researching the best sponge with a handle type of thing to reach my back and legs for rough days. I’m also awaiting a new gadget to help with applying lotion by myself.

    I haven’t talked about it much, but I use a medical wearable called Visible that helps keep me on pace to conserve energy (think spoon theory meets technology). I’ll write a post and maybe a video that goes more in depth about this powerful tool, but for now, know that it is amazing and gives real, usable data to everyday symptoms. Previously, my showers cost me an average of 1.3 points (I only get 14 a day). After these changes by the OT, my shower this morning only cost me 0.8 points and more importantly, I didn’t end up crashing into bed after. Remember also that I showered yesterday as well.

    I sometimes talk about the life I used to have versus the life I have now. Neither is better than the other, it’s about what you make of it and knowing that God, above all else, puts you exactly where you need to be. In my “previous life” I jumped out of bed and showered every day, something I couldn’t do now, but you know what? Those showers in my “old life” often were the perfect environment for daily tears when I was completely overwhelmed by my job, my situation, and life in general. I couldn’t let others see this side of me so I had to hide, the shower provided the perfect place to do this.

    So, I might not be able to shower every morning after bounding out of bed, but I no longer hide and cry in the shower. Like I said before, neither is better than the other, but the wisdom lies in the perspective of having lived through both lives. Every season or life we live teaches us something, the trick is to try to learn the lesson at the time and not through hindsight.

  • 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.

  • Medications: Am I Just A Seagull? Organizing my pills and more!

    I have completely lost count of how many medications I take throughout a week or even daily. I try to cut out medications as much as possible, but it seems that someone always wants to add “just one more!” I believe on average I take 12-15 pills in the morning and at night, plus a mid-day dose of 2-3. This is of course not including pain meds or other “as needed” medications or injectables.

    I see many specialists for my various conditions and each prescribe medications as needed. My primary care nurse practitioner is wonderful and she does the best she can to stay on top of all of my meds. Unfortunately, mostly due to cost or insurance rules, I have to use multiple pharmacies. This causes some confusion, especially to a provider that is new to me.

    You may ask, “How do you manage all those medications?” I try very hard to stay organized. I use a google doc that I update with every change in medication. I print this form and give a copy to my PCP, in my “Vial of Life” that sits on my fridge, and one goes in my purse. The advantage of using google docs is that the updates are easy, and it lives on my phone for emergencies.

    Another way I manage medications is through a device called HERO. A HERO machine is a pill dispenser that allows up to a 90 day supply to be inserted into capsules in the machine. Then, using an app on my phone I can program the machine to remind me to take my medicine and needed times of the day. It’s also great for caregivers, as you can get alerts if someone misses a dose or tries to take an extra dose. Unfortunately, the HERO doesn’t allow for all my meds (it takes up to 10), but I use it for my most often (longest used) meds.

    The pills that do not go into the HERO, as well as the ones that are dispensed from the HERO, I usually take all at once. I have always been a great pill swallower, and I greatly appreciate my ability to swallow many pills. I saw this quote below, I laughed so hard that I knew I needed to share it with a blog post. It paints such a visual of what I feel I must look like swallowing so many pills.

    How do you manage your medications? Do you use a pill box or something else?