Tracey Parker shares her journey with immune thrombocytopenia (ITP), from five unsuccessful treatments, including a splenectomy, to finding resilience in self-care and community. She reflects on acceptance, adaptation, and the strength found in cycling, friendship, and focusing on what can be controlled.
Transcript
I had five failed treatments before finding something that worked for me. One of those was a splenectomy, and I did that reluctantly.
I did my homework and I talked to a lot of doctors, and I trusted doctors that I knew, and they kept saying, “It’s the best thing for you. It’s the only thing that we think is going to help you.”
And when that failed — and it failed — I think we knew within about six weeks. I was mad, sad — a lot of emotions. There was kind of a turning point right after that where I thought, “You can’t control it. You made the best decision based on the facts that you had. So what we’re going to do from here on out is control what you can control.”
So for me, that meant getting as much sleep as I could, trying to eat healthy, moving and exercising, taking care of my mental well-being to help give me some peace of mind and really help with my stress levels. My stress levels were really high.
I was biking a lot and sometimes I couldn’t bike and that was really hard. But I could go and hang out with my friends who were biking afterward, or we would meet up on Monday nights in Detroit and it would be a big group bike ride. A thousand people, about, when I first started — it got up to about 5,000 right before COVID-19 happened.
But meeting up with these people and kind of being free for a couple of hours during my rides, if I could ride and my platelets were good enough. Just not thinking about it. But I have had to adjust that at times — I have not been able to ride. I’ve had to cancel rides, I’ve had to cancel big rides.
I actually went to New York City and did the bike the boroughs, the five boroughs, and that’s a 40-mile bike ride. And I was adamant that I was going to be there with friends.
And I did it — six weeks after my splenectomy. I was determined, and my doctor gave me the go-ahead the week before, and he said, “You can do it if you feel up to it.” So for me, that has helped me a lot.