Fiercely Independent Pam

Tag: POTs

  • My Hospital Room’s Floor Needed a Hug: Overnight Adventures!

    You really can’t make up what goes on in my world. In the wee hours of the morning, I got up to use the bathroom and washed my hands, all while using the provided walker. As I was on my way back to the bed, the floor jumped up for a hug and I crash landed on my butt and hip area. Once I came to (in actuality I passed out again), I scooted myself to be able to reach the call button on the bed.

    The next few minutes were quite a blur. A rapid response was called and lots of people came flooding into the room asking a billion questions. No, I don’t think I hit my head. Yes, my back hurts (on goes the collar). Yes, I need help getting up(be careful what you ask for, help comes in the roughest form possible usually.)No, we are not waiting for any guys to come, women power at work! Poof! I was back in my hospital bed and off the floor.

    I was then whisked away to the CT for a full body scan. Nothing major came up on the scan, so I guess that is a good thing. No new incidental findings either!

    Then I regained my composure and realized my left lower leg was not really working and felt heavy and weird. Called the nurse, got shipped to the neuroscience unit and here I lay with collar still on awaiting a fun trip to the MRI machine to scan my entire spine. That should be at least an hour in the tube! I am obviously not allowed out of bed at this time so using the bathroom is an adventure. As is keeping my pressure sore which was healing so well from getting worse and opening.

    Trying not to be scared about the numbness, thinking it’s related to the L1 compression fracture that I previously had. The neurosurgeon was in and concurs with the plan of the full MRI. This is going to be an expensive bill, thank goodness for good insurance. Hopefully the treatment will just be more time in the back brace.

    Thank goodness for my tribe, those people who are willing to help me when the going gets tough. My brother is picking up some stuff from my apartment like my back brace and my dear concierge friend is helping to pack up the stuff with my crazy list and locations of everything. Then, there are the friends and family that have called or texted. I truly appreciate my tribe and hope they know it. I just hope despite my limits, I am a helpful member of tribes for others too!

    I will try to do a video update once I get some results. Until then, please say a prayer that everything works itself out!

  • 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

  • Health Update: A Setback or Reboot? My Latest Adventure

    A setback is just another word for reboot. I could say it is something negative, as it seems like everything is against me at times, but I am choosing to see it as an opportunity to reboot. That is, my cardiac rehab plan was going so well, but something unseen must have been wrong.

    Last Tuesday night, when I was getting ready to go to bed, I stood up from my wheelchair to place an insulin needle in my sharps container. I remember that I didn’t “feel well” aka, my blood pressure was dropping, and next thing I know, I was waking up on the floor. I was fairly confident that nothing super emergent was going on, but I had incredible pain in my hip, neck and back. I knew this meant that I needed to go to the ER and get checked out. So, I called the ambulance to help me get up and bring me to the ER.

    The ER ran scans of my head and neck, as well as X-rays of my pelvis. Nothing was out of the normal range for me, so they sent me home. I knew this fall would be a setback for my progress, but resolved to continue to trust the process. I got home around 1:30am and had a very uncomfortable night.

    The next morning, I planned on having a quiet day to recover. I made up my mind that I wanted to follow up with my orthopedic doctor about my hip. I was excited to get an appointment for the next day. Not a setback, but progress… My appointment was with a PA that works with my hip orthopedic doctor. He was wonderful but had unfortunate news- he was fairly certain that I fractured my hip and need to be completely non-weight bearing until I could get an MRI and figure out next steps. Another setback for sure, as if there is a fracture, I will require surgery!

    So, I am mastering transferring from my wheelchair without putting weight on my left hip/leg. This “setback” has reminded me of how grateful I am for my wonderful power wheelchair that gives me freedom, even in unknown times. I am also in a holding pattern, waiting for an appointment for my MRI, with several implanted medical devices, clearance for a MRI takes some time!