My name is Ana Valdez. I am 36 years old, a single mom of a silly and handsome 5 year old boy, and a histio warrior.
My symptoms started my last trimester of pregnancy. I was thirsty, dehydrated all day, and lost over 30 pounds. After many months, many embarrassing accidents, quite a few tests later, and being wrongfully diagnosed with other illness, I was finally diagnosed with diabetes insipidus. Although I was being treated for DI I was still getting scans and being referred to many specialist to find the cause of the DI and symptoms (headaches, dizziness, fatigue, bone pain, & limping).
My journey continued with my pituitary being radiated, having several biopsies, and traveling to other states to see histiocytosis specialist. I was at my wit's end after discovering they never should have radiated my pituitary, and several test that needed to be ordered to properly diagnose weren't ordered. I needed answers, a formal diagnose. Fortunately, my insurance changed and I was referred to a histio specialist, who not only lived in the same state, but ordered the correct scans and proper testing. It took nearly 3 years to get formally diagnosed. I have langerhans cell histiocytosis with pituitary and bone involvement. The LCH in my pituitary caused hypothyroidism and adrenal gland insufficiency.
This journey has been long, full of uncertainty, pain, emotional and physical changes. I've had too face this process and learn how to be a single parent.
I’ve learned how to re narrate for myself vs focusing on how hard this is.
I’ve learned to draw from faith, God to give me strength, energy and power to face each moment, and learn how to connect with family. I want to share with you that histiocytosis has shaken the foundation of who I was, my priorities, things that defined me.
I learned that treatment is not just chemo but what are you giving to yourself to heal yourself.
What am I telling myself? How am I narrating my life despite histio. I’ve learned to also re define hope. Hope in this moment, in this single breath. Hope in focusing what I do have right this second. Having tenacity for this moment!
Hope in being present with myself, my son, and a growing desire to deposit hope to my fellow histio community.