Fiercely Independent Pam

Category: helpful products

  • POTS and Dysautonomia: My Daily Buddies and How I Stay Upright!

    I’ve been toying around with this topic for quite some time. POTS/dysautonomia is something I live with on a daily, almost minute to minute basis. It is probably my most debilitating chronic illness I have. The symptoms seem to always be shifting and changing. I have done a lot of research and was intrigued to find out that the symptoms I’ve had since early teenage years that were always blamed on Mitral Valve Prolapse Syndrome, turned out to be dysautonomia issues.

    Looking back, it all started in middle school when I would have issues breathing and often felt faint and/or passed out. I was barely able to participate in gym classes and other exercise was not possible. I was told it was anxiety or all in my head. It was especially bad on hot, humid days. When I look back, I realize all of those symptoms are still with me, but even more pronounced.

    One of my newest symptoms is the switch from always sweating to try to regulate my body temperature to not being able to sweat almost at all. This presents a whole new slew of needs and I find that I overheat more often than ever before, which was a lot to begin with. So, I use fans, cooling pads, and some great things like Dr. Chilly Rings and Chilly Cheeks.

    I have found the best solution is to try to stay as active as possible. Regular exercise, even a short walk makes a difference and allows the symptoms to be much better. There are times that nothing but bed rest works and during these times I have to protect myself from passing out and getting injured.

    Mobility aids are a huge part of my life as they keep me safe from passing out. I use a combination of mobility aids including a large rehab style power wheelchair, rollator, as well as my favorite right now-my Zeen. Often I get asked why I have so many devices, and my usual answer is that my needs change on a regular almost hourly basis. Additionally, not every device is right for the job or needs. I cannot take my large power wheelchair in a car or airplane and I usually need more support than just my rollator. My Zeen is slowly finding its way into rotation, even when I leave my community.

    Other things that I do to help mitigate symptoms is to stay hydrated and add salt to almost everything. The salt keeps my blood pressure high enough that when I stand, it doesn’t bottom out causing me to pass out. I have tried a lot of different products, but my favorite is Buoy Drops. They can be added to almost any drinks; sometimes they change the taste, but they do work. I also take medications to keep my heart rate lower than it naturally runs (I have a rapid heart rate)and sometimes take other medications that raise my blood pressure as well.

    In addition to medications, salt, and mobility devices, I depend on compression products to help prevent blood pooling. I have decided that if I have to wear compression socks, I’m going to make the most of it, so I wear great socks, mostly from Crazy Compression, but I wear others as well. It’s become a little bit of an obsession and I love finding fun pairs. I try to post pics of new socks as much as possible. I also wear Jelliebend compression sleeves for my abdomen, which has the added benefit of helping my hip pain. These are not your usual uncomfortable abdominal binders but a wonderful material that is friendly to people with sensitivities to seems and such.

    There is nothing scarier than having a racing heart, passing out, or not knowing what is going to happen next. It is a constant battle of “Is this symptom new and needs to be addressed or is it something I just have to learn to deal with.” It has been said that POTS/Dysautonomia has the impact on your health in a very similar was congestive heart failure does. Meaning that it becomes a very large part of your world.

    I have learned to make the best of my diagnosis and take the lessons it teaches me to heart. Sometimes that means slowing down, sometimes it means sucking it up and getting out there to exercise, and other times it means to simply Let God do his thing. I am not sure what will be next in this adventure, but I am ready and I know the next steps will include a wonderful four legged service dog to help.

    For now… I will remain positive, but continue to take the time my body needs to keep going strong…

    a back view of my power wheelchair- is decorated with various stickers of places I've traveled, characters I love, and more

  • Medical Appointments: Keeping Them Organized and Finding Ways to Get There!

    I average 5-12 medical appointments a week. This includes home health nursing, tele-healths, traditional appointments with specialists, and therapy appointments. It’s a big time commitment to attend all of these appointments as well as keeping them all organized.

    To stay organized, I use the calendar on the phone/computer as well as a google docs file that includes any appointments outside of my apartment. The file contains the date/time, provider’s name, address, phone number, as well as a place for transportation notes. I find this file so necessary, as sometimes I need to print or send a copy of upcoming appointments to various providers. I have even started to color code some items on the sheet. The bonus of having it as a google doc is that I am able to share it with various people (family) and they can see any changes or updates.

    Transportation is the biggest issue for me to get to appointments. I try to make local appointments on Tuesday or Thursday when the bus is available through my community for appointments. MUSC appointments require the most resources as I need to coordinate them with either my niece, private transportation company, or using UBER. All are expensive options. All of this also requires me to determine what mobility device I am going to use. If I wake up to go to MUSC with my rollator and feel terrible, I am stuck and can’t switch to my power wheelchair. It’s a lot of thoughts.

    Transportation is a huge hindrance to many people’s access to heath care. If you can’t leave your house, you are significantly limited to the type of health care or quality of health care you receive. Likewise, when you are limited by milage or transportation routes, you become limited.

    I am eager to see my Medicaid application be approved and provide needed support for transportation as well as other things. This process for application was very extensive and difficult. I am hopeful that the results will be worth it!

  • An Adventure With My Zeen…And An Appointment Update!

    I don’t often say that a doctor’s appointment is “fun”, but yesterday’s visit back to Charleston to see the wizard (the dysautonomia specialist) was a blast. I knew that in the back of my mind was always the desire to bring my Zeen with me since he was so supportive about getting a Zeen.

    Since I have been working so hard, I successfully brought my Zeen with me to Charleston. With some help from my niece to load it in and out of the car. Using the Zeen in new places was quite the adventure. I successfully navigated the bathroom, elevator, parking garage and more! I even had a couple stop me on our way out to ask how I liked the Zeen as they did a virtual appointment with Zeen to help them determine if it would be right for them.

    While I was with the Wizard, he rounded up the residents and medical students in the neurology clinic and then had me “show off.” I had so much fun talking with them about the difference the Zeen has made in my life in the last month.

    I, of course took notice of the small differences. I enjoyed being able to see the person at sign in and sign out instead of staring at the wall like I do in my wheelchair. Also, I can make it go low and be eye to eye with people sitting down. Its nice to not stare at belly buttons all day.

    I’m not quite sure where I would be on my rehab journey without my Zeen, but I am sure glad that I have it!

    As far as the appointment went, I was given the green light to use the Droxidopia as needed based on my blood pressure in the morning. My goal is to get to 45 minutes of standing exercise, using a combination of seated and standing exercises to train for that goal. He released me for 6 months, but he reiterated that he is always available via messages on MyChart.