Advocacy

Symptom flares can be unpredictable and present differently among patients. Here is what I experience.

I know I’ll never be the old me, but I can be the best me I can be today. 

Another day of beating this rare disease is a good day for me. 

This system is the only way I can get housework done.

The importance of the documentary outweighed my worries, but I’m still praying my cornbread-and-mustard-greens southern drawl doesn’t sound bad.

This disease does not define who I am. I make that decision. And my decision is to grasp at each moment that brings my life joy.

All the “what-ifs” are constant reminders of a life lost to me.

When the doctor strolled in, at once all my stress and worry disappeared.

I did not know this help existed, but I am so thankful for these foundations and the donors that care enough to help.

We all have enough medical debt without accidentally paying for someone else’s, too.