I began my journey with ITP five years ago. At 52, I had just gone through a difficult divorce and recently moved – an already stressful period of my life. I started noticing large bruises on my legs that I chalked up to riding my bike. After ignoring subtle signs for several months – bleeding gums, blood blisters on my tongue, strange bruises, and rashes – I went to see my internist. He called that night saying he thought I had ITP and referred me to a hematologist the next day. I actually knew a little bit about ITP because one of my friends was diagnosed about 20 years before.
After meeting with the hematologist and more bloodwork (and another late-night call) I ended up in the hospital for a few days. At the time, I just thought they’d give me something to resolve it, and I’d move on!
I tried many different treatments over the next several years – all which failed. The ups and downs can mentally be a drain. I knew I needed to take control of what I could by getting plenty of rest, exercising, eating healthy, educating myself about ITP, and becoming a partner in my treatment. I’ve perfected the 15-minute power nap most days, and friends are understanding if I need to rest to help combat the chronic fatigue. My motto ever since has been, “Control what you can control, let the rest go!” It’s served me well during those lows when my platelets crash, and I’m left wondering why. I also learned how to meditate, which has helped reduce stress and see someone for sound therapy and reiki periodically.
Humor and attitude have been key to dealing with ITP. I’ve had amazing care with a great medical team and incredible support from friends and family. Five years later, I have my “Thursday people” – those who check in to see what my counts are and are there for the good news as well as the bad news. I’ve found a treatment that has kept my platelets stable, and I am encouraged by ongoing research and hopefully new treatments on the horizon.
ITP has taught me how to slow down, enjoy every day, and be grateful for what I have. I am now finding that helping others navigate this disease is truly fulfilling and inspiring.