On the 4th Day of Rare Christmas Phoebe wants you to know...when you are living undiagnosed there seems to be no light at the end of the tunnel. The twists and turns that your health take parallel the "I don't know" answers you get from doctors. Every time something happens...a new symptom appears, an existing symptom worsens, a lab results shows something new, an illness deteriorates your already weakened system...the unnamed conditions plaguing your body get harder to treat. How can you treat a condition when you don't know what the condition is? What if there is more than one condition? Will treatment help for all of them? What treatments will interact with one another? How can you effectively treat symptoms if you don't know how the condition will react to the treatments? Will it make it worse? Will it have no effect at all? The truth is, the honest answer, the only answer, is "I don't know". It's in those "I don't know's" that the light at the end of the tunnel disappears into the dark. Leaving a feeling of hopelessness and fear. Fear of never having a name for the condition(s). Fear of never having effective treatment. Fear of your child not seeing middle school, high school, college. Fear of never being able to protect your child from all the struggles and pain their health is causing them. But even in the darkest feeling of hopelessness there is light. It isn't a light at the end of a tunnel. It's the light in your child's eyes. Just one look into their eyes. That's all it takes. One look and no matter how hopeless things may appear, you remember exactly why you are fighting. Fighting for a name. Fighting for treatments. Fighting so rare and undiagnosed patients don't have to settle for "I don't know" as an answer. You are fighting to make sure there is a light at the end of that tunnel. For your child. For other people's children.
The true author of this blog is my daughter Phoebe. This is her life. I am blessed beyond words to be her mommy and to be able to share her story with you.