A Story, A Cause, A Friend

I have a story to tell about me, a cause, and a friend. This top picture of me was taken before I was diagnosed with Crohn's disease. I was a normal (well, that's debatable) person. I had spent my entire life, as far back as I can remember, having agonizing stomachaches and fevers and tiredness, but as a "classic overachiever" every doctor I saw attributed my problems to stress. And so, like a lot of people, I trusted the white coats. After Oldest Daughter was born, I even had bleeding each time I went to the bathroom; I lost 25 pounds in one month, and the imperious jerk I went to see chalked it up to . . . "worrying too much as a new mom." This second picture was taken less than 60 days after the top one. Yes, that is me, the same person, unrecognizable on so much steroids I thought I would blow up. By THIS time, I had nearly died, my parents had been called in the middle of the night to my bedside to say "good-bye," I had lost pints of blood, and the white coats were now discussing both blood transfusions and major surgery to remove most or all of my colon. Sixty days.

I spent the next YEARS of my life clawing back from death's door to some semblance of the life I had before. I had a diagnosis, but what I didn't have was a cure. In fact, all these years later, I am still waiting for one. This is Crohn's disease.

As a writer and a person and a mother, having Crohn's disease impacts my life. Not just a little but in almost everything. Right now, for instance, I am really rundown. I've had a "bad day" in terms of my gut. I am concerned that if I don't rest enough I will come out of remission. As for my family, Oldest Daughter's memories almost all revolve around me being sick in some form or another. Christmases in bed. Hospitalizations. Pain. My other kids don't know me any other way. I get the joint pain manifestation, too, so on a bad day, on a scale of 1 to 10, my joints hurt at a 20. They scream to me. SCREAM. Until my brain hurts.

I don't talk much about it. My family knows. My best friend. But living with this disease is the hardest part of my existence. I wish for a cure every day. My kids have a 30% chance of inheriting it. I wish for their sake there was a cure. I left Western medicine for Traditional Chinese Medicine and acupuncture, and I have been in remission for a year and a half now. But still I have God awful, curse the gods, bad days.

Now I have to tell you about a friend. You know him as Ewoh. His name is Brian Howe. And he made me cry. Hard. But in a good way. You see, Brian is going to run a half-marathon to raise money for the Crohn's and Colitis Foundation. He is running the race in my honor, and in the honor of others he knows with the disease. I cannot TELL you what a tremendous gesture of friendship that is. It is really overwhelming actually.

This is the link to his fundraising page. I hope you will visit it. Or just let him know what a beautiful person he is for doing this.

This blog is about a writer's journey. My journey has included more pain than I would ever share with anyone or on this blog. I think that's some of why I am a writer. I had to make sense of pain. I had to make sense of having an incurable illness that has at times relentlessly tried to destroy me. But along the way, I have been SO LUCKY to have met the most incredible people. They have come along when I needed them most.

I just want to thank you for taking the time to read this post today. And I want to thank Brian. For me, for my family, for all the people research will help. I wish and hope and pray for a cure. But I consider myself blessed that I have . . . good friends.

Peace,
Erica