Fiercely Independent Pam

Tag: Chronic Illness

  • My Meeting with the Wizard: An Adventure in Dysautonomia

    I did it! I met the wizard- he came in the form of a Dysautonomia specialist at MUSC. (see here for more details)He met with me for almost a full hour. He explained how picky he is being choosing patients so he can do the most good. I felt lucky to be pat of the “unlucky’- sick enough to see him.

    We talked about my symptoms- I was glad to have organized all of them ahead of time. We also discussed previous diagnoses as well as previous testing, like my tilt table test in 2014. He seemed to know what I was going to say before I said it, especially in regard to symptoms.

    Then came the next steps: a skin biopsy for small fiber neuropathy, medication review and management, as well as a focused exercise plan to build up standing tolerance. All of this seemed to “click” with me as the wizard said it, especially the idea of small fiber neuropathy vs. dysautonomia.

    I have never heard of small fiber neuropathy before but it, not dysautonomia may be my culprit. It causes several issues with touch, temperature, pain, and even some bladder issues. All of this made sense.

    Regardless, he plans to do a full round of dysautonomia testing once he finishes building his “lab.” In the meantime, I’m to focus on my blood pressure, keeping a log as well as raising the threshold for medications(keeping my blood pressure a little higher than normal so that when I stand up, it doesn’t bottom out). Reintroducing some salt into my diet to keep me from bottoming out and beginning a focused cardio exercise plan that gradually introduces standing exercises.

    It’s a lot of work on my end, but I’ve never stayed away from hard work, and believe I’ve had the power all along, like Dorothy. Now I have learned that the Wizard isn’t just a guy making smoke behind a curtain, but a real human that has done his “homework” of sorts on the puzzling condition of Dysautonomia.

    Oh! and the best part is that the Wizard is willing to do virtual visits as much as possible, which is very exciting for me. As much as I love traveling in Cinderella’s Coach, I like not spending the money or the time to travel to Charleston.

    “You’ve always had the power, my dear, you just had to learn it for yourself.” — Glinda

  • 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.