Fiercely Independent Pam

Blog

  • I’m Off to See the Wizard: A Journey to OZ?…

    Well, a lot is happening here! I might not be on the Yellow Brick Road, but I feel like I’m riding in Cinderella’s carriage. For the first time, I am using a car/van service that allows me to bring my power wheelchair to MUSC. It wasn’t a cheap decision, but it’s exciting! I’m on my way to meet my “Wizard” the one is supposed to make everything ok! That is, I am finally seeing a POTS/Dysautonomia Specialist. He only started in mid July and I was one of the first to get on his schedule.

    My Wizard is DR. JOSE LOPEZ CASTELLANOS, a neurologist at MUSC. My wish isn’t for a brain, heart, courage, or even a way home, but a plan for treatment for the giant group of symptoms. Ever since I was 12 years old, I was passing out for “no good reason.” I’ve always had problems with temperature regulation, as well as random other symptoms including urinary issues, blood pressure regulation, swallowing, random hives and allergies.

    I’m really trying not to get too excited, after all the wizard was just a regular man. I must realize that not everything can be solved in just one visit, but still the temptation is there to dream about not having symptoms. I realize that this too isn’t going to be a possibility; POTs is a horrible group of symptoms that is difficult to control. No amount of diagnostic codes are going to cure me.

    I want to learn from the wizard. Anything that I can do to improve my quality of life is what I am looking for. It might be a new medication or some exercises. More likely it will be a process of testing ideas and coming back to the drawing board. My goal is to not get frustrated by the process, after all Dorothy found her way home through perseverance.

    I’ll be sure to update you all about my meeting with the wizard. I am hoping I have more to share than just seeing a man behind a curtain.

  • Where Do You Find God When You Have Chronic Illness?

    I am a “cradle Catholic”, meaning I was raised Catholic and continue to practice my faith. I have always been proud to be Catholic and find the traditions, prayers, and consistency key to deepening my faith. Don’t get me wrong, there has been many, many times that I have lost my way or questioned my faith, but somehow I am always drawn back to the Rock-my God.

    I longed to go to Catholic School as a kid, and that longing grew stronger, but it was never in the cards due to financial strains. So, when looking at colleges, I knew I had to give my best effort to attend a Catholic College. It was a goal I set and achieved, I attending the College of Notre Dame of Maryland, now known as Notre Dame of Maryland University. It is a small, liberal arts university that is unique not only in history, but in its Catholic faith. I found that my desire to teach came directly from God, a calling from Him to reach His children.

    I also found a wonderful group of sisters, mostly School Sisters of Notre Dame (SSND), who inspired me on my journey to become my best self, as a woman, as well as a teacher. I was challenged to take more leadership roles and consider the life of an administrator. God called to me through the SSND’s in a way I was not prepared for. Their caring and thoughtful mentorship and teaching, showed me another way of life. That is that I did not need to be the richest or most powerful, but that I needed only to fulfill the desire of God’s plan for me.

    I became the teacher I wanted to be and aimed to be the administrator that I was called to be, but all this ended in a big way when chronic illness took over my life. At first, my mental health took a downward spiral, forcing me to move to be closer to family. Then, my physical health, including brain surgery, frequent asthma attacks, and a growing list of problems forced me out of education all together. I often questioned why God has chosen this path for me.

    It wasn’t until I mourned the passing of both my parents, that I realized God wasn’t doing anything against me, but for me. I wouldn’t have traded the times I had with my parents last years, months, and hours for anything. These memories will forever live in my heart.

    The same holds true with chronic illness and my relationship with God, hindsight shows me that God was trying to tell/teach me something, but my stubbornness gets in the way sometimes.

    I am not one who likes to give advice, but please know that God is always working through you. You may feel like he is a million miles away, but somehow, someway he is working through you.

  • 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?