I have been given such a gift as I head down the journey of living with POTS. I want to take the time to talk about my past two visits to Cleveland Clinic and the gifts from those experiences.
On September 28th my mom and I drove to Cleveland together (a gift in itself). I got the chance to participate in a shared medical appointment. There were about seven people living with POTS as we met with our doctor, who specializes in dysautonomia, POTS and is at the forefront of a lot of research on POTS.
We started the appointment by writing down three things we were proud of or we had done right that week. The doctor mentioned that many people living with chronic illnesses are constantly focusing on what they couldn’t get done or where they fall short each week.
I fought this exercise in my head. It felt dumb. I’ve been a very positive person and have been strong through this! Right?
From the outside.
My last blog post reveals the truth: I was always focusing on the ways I was falling short. I still fight to not focus on it.
I learned so much about POTS, the common misconceptions, the reason I experience everything I experience. I talked with people who had way longer and harder diagnostic journeys than I did. I asked questions about their experiences. I shared in a community that understood each other.
I got to hear the doctor validate us and emphasize the reality of living with POTS. He said “POTS feels like having the flu and drinking a huge pot of coffee.” I learned that your body constantly runs on adrenaline when you have POTS, so that brings a wide variety of symptoms.
I was finally able to understand more of what is going on in my body and why. What I thought was normal or no big deal was actually due to living with POTS.
I went back to Cleveland two weeks later to meet with my doctor’s nurse practitioner and to get some blood work done. I finally got to sit in a room with someone who went over my test results with me, who explained POTS as it related to what I experience, and got to know my personal story and experience as it relates to my diagnosis.
He listened to all of my symptoms and gave me specific things to start doing to manage my symptoms. He also recommended me to cardiac rehab so that I can start working back into shape so that my body can start to handle more activity and start to feel better.
I left Cleveland Clinic with a specific exercise plan for me to do over the next few months created by doctors who know my story and know what POTS patients need in regards to exercise. I left with even more specifics on how to continue handling life with this diagnosis.
I no longer have to guess and try things because I have a specific plan created by doctors and nurses who spent time with me and listened to me.
It has been worth all of the hours of driving to be in a hospital that knows POTS so well and seeks to take great care of those of us who have it.
I have clear next steps and a medical team who is walking through it all with me. I’m thankful the Lord has brought me to this place with these people. I see a road to wellness ahead. Maybe not completely back to normal, but a new normal with new weaknesses and new strengths.