Fiercely Independent Pam

Category: Memories

  • December- A Refection on Chaos, Peace, and Finding Friendship!

    The chaos of December never disappoints! I love that we are called to get together with friends and family in spite of the busyness of gift gathering, celebrations, and hopefully some time for quiet prayer and reflection. Today I got to see two wonderful ladies in my life, one from my principal days and another brought to me through an amazing woman who I got the privilege to call a friend. I also had other friends try to hunt down a Grinch Meal for me so that I could join in on the trend! I am blessed in so many ways.

    December also brings a chance to reflect on other blessings. There is nothing better than lighting my Advent wreath and having the tree lit as the only lights in the room in the morning and taking the time to either pray the Rosary, write a reflection, or simply ponder life! Despite some trials and tribulations, I am doing great! I feel better than I have in years, returned to my cardio rehab program, and am back to wearing shoes (and not boots provided by my orthopedics).

    I have become a big believer in manifesting your future. You need to put good thoughts into the “universe” in order for them to come true. I feel like it is more a different form of prayer than some new age idea. Likewise, if you put doubt, fears, or bad “juju” into the universe, it’s going to come back to you! I am learning to be positive about my thoughts and not dwell on negativity. December is the perfect time to reflect on my progress in this area. I spend time looking back at the whole year and planning for the next year.

    I also love making Christmas magical for others. Through hunting for the perfect gift for everyone on my list, I cherish the smiles that the gift brings. My love language is definitely giving gifts- small and large. I have previously wrote about this. This year I am trying my hand at more homemade gifts. I am also working on a few surprises that will hopefully restore other’s belief in Christmas “Magic.”

    What makes December different than other months for you? Do you take the time to slow down and enjoy the ride? Or are you so busy that you forget this all important task?

    Advent wreath with purple and pink candles with flowers and branches isolated over white background
  • Advent/Christmas Celebrations Sprinkled with More Doctor’s Appointments!

    Advent/Christmas Celebrations Sprinkled with More Doctor’s Appointments!

    The rush before the holidays used to be insane for me! When you lead a Catholic School, you literally have to celebrate everything in the month of December and the season of Advent. Saint days, concerts, surprise visits, Santa landing on the roof of the school, the Gingerbread man running off his tray… EVERYTHING! It’s so much fun, but exhausting. I miss it- A LOT! Now that I am living in senior housing, we have a lot of activities for the Christmas season. I am enjoying finding time to share talents with others. It also means a lot of doctor’s appointments in a short amount of time because offices are closed a lot during December for their own activities.

    So, I’ve been busy with appointments. BIG appointments. I feel like I am past the point of going to appointments to survive and now finding ways to thrive and prevent bad things from happening. Yesterday, I had my annual brain MRI for my V/P Shunt and to also take a peek at the pituitary tumor that lives in my brain. The MRI is less than comfortable since they have to not only stick you deep into the MRI machine, but also place a cage like thing over your face and head. It took about forty minutes inside the machine, and really the only thing I ever think of doing is praying.

    Yesterday afternoon, I also had a Telehealth with the Dysautonomia specialist at MUSC (AKA “The Wizard”) He was his kind, understanding, knowledgeable self. We talked about the skin biopsy I did in October, which was very positive at all three sites for small fiber neuropathy. Still trying to learn what all that means. We discussed the need for me to pick up the cardio rehab program again and the frustrations of trying to get the Zeen approved. We changed a few medications to help prevent my blood pressure from bottoming out. He invited me to reach out if I needed anything but scheduled a follw up for spring time.

    Today, I made the trek down to MUSC for two different appointments, with the first starting at 8:30am, so it was an early morning. My first appointment was with an infectious disease doctor who specializes in risk assessments for future surgery. In my case, I was referred to her by an orthopedic surgeon for possible total hip replacement surgery. She had some grim thoughts about complications with the surgery, stating that while the average risk of infection for someone is around 1-1.5%, my risk was near 10%. She had some ideas to mitigate the risk some including nutritional support, blood work, and nasal swabbing all before the surgery. It’s a scary proposition and I have no idea where I land with it all.

    The second doctor’s appointment was my annual appointment with a neurosurgeon about my VP Shunt and IIH. She checked the shunt settings (they didn’t move during the MRI)and also reviewed the MRI. The shunt is doing its job a draining extra spinal fluid away from the brain. We discussed that my recent weight loss and use of a GLP both help reduce the pressure. The next step is my annual torture at the eye center to determine if the optic nerve continues to be affected by the pressure. My hope is that I receive an “all clear” and can stop taking the diamox medication that I hate taking. I have another appointment with a different neurosurgeon soon to review the results of the MRI in regards to the pituitary tumor- which spoilers alert- is growing and secreting hormones at twice the rate it did last year, but that’s a conversation for another day!

    So there it is, a weird brain, high infection risk, and blood pressures that won’t behave. I am beyond a hot mess- and just so complicated. I am so fortunate to have MUSC in my life and their expertise and caring nature fit my needs. It’s just a shame that they are over two hours away and require a small mortgage payment to get there and back.

    Advent is here! We are all counting down the days until we get to meet our Lord in swaddling clothes lying in a manger. It’s exciting enough, I do not need this level of craziness from the medical world.

  • Accessibility Rocks: Being a Tourist in Your Own Town!

    I’m catching up after an amazing weekend with a friend from out of town. There is nothing that can do as much good as spending time with a friend- genuine, quality time listening to each other, sharing stories over coffee and yummy food. This is true soul food. The only thing that is better than friend time, is baking in the glory of the sun at the ocean. And when you combine the friendship and ocean, something magical happens- especially if accessibility needs are met.

    One of my favorite things to do is to play tourist in my own town. Living in a tourist destination makes this super easy to do. Myrtle Beach is pretty accessible, but it can still be difficult to navigate in a wheelchair at times. This past weekend, we cruised around town and took in the sites of old Myrtle Beach as well as enjoying some quality meals. We rode the giant SkyWheel, took the tourist pictures (and bought them), and even did some surf shop shopping. The greatest accomplishment of this past weekend, was making it to the ocean. Not just looking at the incredible views that the Atlantic Ocean gives us, but getting down on the firm sand and feeling the warm of the sun-kissed sand in between my toes.

    This feat was accomplished because we were able to “rent” a beach wheelchair at the awesome state park. The beach wheelchair has giant balloon tires that allow it to move smoothly over the dunes and sand. The park also rents power beach wheelchairs during the season. These rentals are free but on a first come, first serve basis. I look forward to trying out the power beach wheelchair come Spring.

    Accessibility is about making things fair for everyone. Universal design helps everyone. The Mobi mat that covered the sand over the dunes- parents with wagons or strollers benefit using these too. The ramp to get to the beach access without steps helps the senior citizens who want to see the ocean as well.

    It’s beyond time to make universal design the norm. Accessibility should not be the outlier in a park. Why can’t all dune cross-overs have a mobi mat and not stairs? It’s not a budget issue, as building stairs is an expensive process too. Accessibility shouldn’t cost anything extra for the user who requires it. That is, in this example, the beach wheelchairs are free for use and included in the admission/parking cost. Being disabled is expensive enough and lonely enough, we shouldn’t have to pay extra or put our loved ones out to be able to access places.

    Whenever I have someone in town or helping me navigate the world through my disability, I realize it’s an opportunity to demonstrate the world from my view. That is, for example, what it feels like to have to use the ramp in the back of the building instead of the front door. Or to have someone talk to you without making eye contact or to be stared at. It’s a chance to see how people do not move out of the way when you are traveling in a wheelchair or how the stupid end-cap displays in a store are a giant nuisance. It’s a lightbulb moment that is otherwise lost.