Fiercely Independent Pam

Tag: Dysautonomia

  • 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.

  • Mission Accomplished! One Goal Achieved Thanks to the Zeen!

    I DID IT!!! 1/4 mile around the building a week before my deadline! My Zeen is awesome! Not only did I manage to make the full loop, I felt better in the Zeen than ever! I think I finally managed to find the “sweet spot” for the seat and my legs.

    In addition to being more comfortable, I successfully used the cup holder and managed to find places for my keys, phone, oxygen, and even a flyer that was handed to me as I went out the door! The Zeen is just so perfectly organized.

    I love to set goals, and this week is a big week for those goals. I accomplished a big one today. Wednesday, I am going to make sure I can get in and out of my niece’s car in preparation for our adventure to Charleston to see the ENT at MUSC for my sinuses on Thursday. I have decided to bring my walker and not the Zeen as figuring out the Zeen in the car for the first time and the first time I am getting in a car myself might just be too tricky. I do plan to bring it the following week for my appointment with the Dysautonomia specialist so he can see how well I am doing with it!

    I am so proud of myself for making the 1/4 mile loop with the Zeen today. I need to remember that my body works in its own time frame and that needs to be ok. Rehab specialist, therapists, and even friends and family mean well, but I hold the key and knowledge for when my body is going to cooperate!

    For now, I will continue to use the Zeen and getting my legs stronger. I hope to get on the NuStep soon as well (pending being able to get on and off of it).

    I included some pictures I took on my Zeen adventure today!

  • Being Positive Smells SO Much Better than Negativity

    I really try to be positive and spread positive thoughts. I am an optimist by nature and believe the best is going to happen. At least, most of the time. Yesterday threw me for a loop to say the least. Instead of my usual positive thoughts, I quickly spiraled into negativity.

    I know how it happened, first my toilet flooded my bathroom. This was followed by being given some bad news at my tele-health doctor’s appointment. Then, I couldn’t schedule my MRI for my hip. I created my own misery and couldn’t get out of it. My usual, positive vibe was no where to be found.

    The toilet flooded because I had a new grab bar type contraption installed due to my potential hip fracture. The contraption made the tank sit uneven, causing it to leak and spill all over the floor. Maintenance was wonderful and took care of everything, but it was still frustrating and definitely not a pleasant or positive event!

    My tele-health was with my urologist at MUSC. It was a follow up from my previous procedures for my “floppy bladder.” I’ll spare you from the nitty gritty details, but I was essentially told that I will most likely have to self-catheterize for the rest of my life and that there is little that can be done to change that. He is going to have me complete a few more tests to see what can help improve the situation, but he was very honest about the fact that he wouldn’t be able to change the outcome too much, even if insurance does approve some things like botox injections and some medications. This hit me HARD! There wasn’t many positive points from the doctor, despite my full respect for his knowledge.

    If mental funk had a smell, I would smell like teenage boy after gym class for sure. I sulked for a while, tried to distract myself, and went to lunch with some of my favorite residents. None of which helped me change the negativity to positive thoughts. I pouted, told others of my woe, and I would’ve stomped my feet if it didn’t hurt so much.

    So, I did something about it… no I didn’t try yoga, deep breathing, meditation, or even prayer- I slept. That’s right, a good ole nap. With the lights and television off and locking my phone to silent, I vegged out and napped for about ninety minutes. I woke up and took stock of my mood, not rainbows and butterflies, but much better. I was officially on the side of being positive over being negative. I went to dinner, laughed with a friend, and decided I was over it.

    Then I did my usual wind-down routine before falling asleep, all knowing that tomorrow was another day to try to stay on the “Sunny Side of Life!” and be positive for myself and others. I did my usual 2am wake up and had a BIG thought… what is stopping me from using the NuStep Bike as an arm bike? That is, why can’t I continue my cardiac rehab using my arms and not my injured leg/hip? Positive thoughts beget positive actions… I need to reboot myself once more to be able to find my frame of thinking.