Echoes of Pain

 In 2011, the year I trained (and ran) the Chicago Marathon, I triggered my autoimmune illnesses. My body started the long work of falling apart during my training, and when I failed to take enough rest afterward, choosing instead to dive into boot camps and more running, negative symptoms piled up. The gut dissolved, which meant that it couldn't produce neurotransmitters, which resulted in severe anxiety. Then the pain started in my head. 

No one knew what was happening with the head pain, I had to do my own research and bring it in to my internal medicine doctor, who actually did listen to me. I was extremely lucky in having him by my side, but he couldn't prescribe anything to take the pain away. In the decade since my illness I have realized that it was a rare form of sarcoidosis that attacked the cranial nerves. At the time it was coded as "burning scalp syndrome."

I recently read this article Neural Sarcoidosis and had flashbacks to that time. The brave author describes her pain well, it's what I felt, too. Her doctor prescribed opioids to help her function, but for some reason I never ventured into that territory. I vaguely remember being given a referral for a local pain center, but I did not make the appointment.  I was certainly in enough pain.

Over the years I have been grateful that I didn't find an addictive medicine that would have worked for me - I surely would have taken it. Instead I battled for years, slowly rebuilding my gut and my strength with the help of many family members and neighbors. I still have residual nerve pain, but it's manageable with a headband and Advil. I've been able to recover to the extent that I have two "Top Ten" times nationally in my swimming age group of 50-54. I think this is partly a miracle.

Right after I read the article on sarcoidosis I listened to a podcast called The Retrievals. The series deals with women's pain, pain they didn't have to feel. It involves opioids, the necessary use of these as well as addiction, or use gone wrong.  The doctors and nurses in this podcast didn't listen to women who spoke of their pain - they were ignored, blamed, overlooked, called hysterical.  But the women were right. 

As women, we need to find doctors who will listen to us. I was lucky to have one a decade ago, one who listened and managed somehow to steer me back to health by following my lead.