No apologies, just a slow and steady stride to the finish line.
I was seven years old when my parents got the news that I had ITP. I had been feeling very tired and getting unexplained bruising. The extreme tiredness worried my mom most. I was admitted to a children’s hospital where I stayed for two months. No treatment, and my body started producing platelets again. That was 1979. I got on with my life.
In 2004, at age 31, I got a stomach bug which lasted a few days. Nothing unusual there, but I couldn’t seem to shake it and over five days I just got weaker. I was admitted to the hospital on day six, where they discovered I had AIHA – auto-immune hemolytic anemia. I had a virus and my immune system started attacking both the virus and my red cells. My red cell count was at 3,000 and I needed 11 blood transfusions and huge amounts of steroids and other drugs to keep me alive. I developed acute chronic fatigue and many other horrible side effects from the steroids, but after about a year I could say I was living normally again with no lasting damage.
Then strike three. In 2017, at age 45, I started noticing bruising. I went for a blood test and got a phone call from my doctor at 9:30 that evening. I needed to go straight to the hospital. My platelets were being destroyed and my count was less than 10,000. ITP again. This time they started steroid treatment right away and my platelets came up. But over the next two months, as we started to reduce steroids, my platelets dropped again and after four months I started on eltrombopag. I am still on that a year later.
Coming off the steroids this time was the worst I have ever experienced. Chronic pain all over… I couldn’t sleep from the pain and was completely exhausted. My hair fell out, I was bloated beyond recognition, and I found it difficult to move, let alone walk. Thankfully, the symptoms have eased and my platelets seem to be staying up with 25mg eltrombopag daily and diet changes.
I am now 46 years old and at times feel like I’m 146! I get bouts of tiredness and pains out of the blue, but I am learning to manage. I can’t plan anything because it’s not certain I could go, but I am very positive. I believe that I am doing as well as I can, and stress is a huge factor in me getting pain and fatigue so I try to live as stress-free as I can. I am able to work, drive, and spend time with friends and family who are hugely supportive and understanding.
I choose to be positive. ITP does not control me, and I am learning to live with it. Yes, I have hard days and get disappointed when I can’t go somewhere or do as much as I would like to. However, if it takes me three hours to cut my grass with all the breaks I have to take, at least I have the satisfaction of knowing that I can do it, if slowly!
The hardest part of having ITP is not looking sick and having to explain why I can’t do things. I have learned to not apologize for the illness and true friends understand. With those who don’t, I just smile and walk away. Those who have faith or believe in a higher power will understand that I trust in God’s plan. This illness is a cross I now bear and my faith keeps me going. Prayer is important to me, particularly others who pray for me. That has got me through and continues to help me get through the hard days and nights.
Thanks for letting me share my story and thanks for the support of fellow ITP warriors. We are awesome!