terminal ain't terrible.
Little ones. Big ones. Unbelievable ones. Physical ones, emotional, average and unexplainable. Once in a lifetime miracles and everyday ones.
I’m also facing a terminal illness. I’ve battled with severe health issues for years. Ive sat across from doctors who have told me I have weeks to live, or with apologetic eyes conceded that I just wasn’t ever going to get better. But I’m here. I’m alive. I’ve danced on broken bones that were never supposed to heal. I’ve lived with a heart that beats too slow. I’ve overcome crippling anxiety, stood on stages in front of thousands leading kids and worship. I’ve sung hope into fear. Believed life past darkness.
More accurately, I’m the sum of a whole lot of miracles.
I'm basically a walking miracle.
Warm up laptop with rainbows until owner yells pee in litter box hiss at cats go into a room to decide you didn't want to be in there anyway push your water glass on the floor soft kitty warm kitty little ball of furr. Relentlessly pursues moth sleep on dog bed, force dog to sleep on floor.
My name is amanda.
hello!
Hi, I am Amanda.
and these words are my perspective.
Perspective I think one gains as a gift when life is lived through the lens that everyday is numbered. The thing is, all our days are numbered and I believe you’re probably living a miracle, too. You may not be dying from a terminal illness, but we all have brokenness and pain.. hope and fears.
I’ve realized my miracle is only going to be my message if I use my perspective and pain as fuel for my purpose.
There’s purpose in the mess. And this website is meant to be a conversation and an invitation to walk with me through mine. I’ll be honest, at times I may make light of heavy things... because some stuff just doesn’t feel as weighty in the light of eternity. I see these final laps as an adventure with a gaze toward heaven. I’m crossing off my bucket list knowing that because life can be fun and eternity will be a party, #terminalAINTterrible is my hashtag. We are all dying, but the win is if we can find ourselves also living. Living, walking...miracles.
Hey Amanda,
what's wrong
with you?
In 2017, after years of hospitals, specialists and tests I was diagnosed with a very rare form of Systemic Scleroderma called Scleroderma sine Scleroderma.
While Scleroderma effects just 200,000 people in the US each year, the specific subtype that I have is the most serious and makes up only about 5% of systemic cases. So basically… I’m one in a million.
Prior to being diagnosed my symptoms/diagnosis and included:
Gastroperesis
Esophogeal Dysmotility
Dysphasia
Chronic Pain
Osteoporosis
Extreme Dental Issues
Temperature Intolerance
Reflux
Anxiety
Anorexia
Hey Amanda,
tell me about your symptoms
The life expectancy of someone with sine Scleroderma is 3-15 years from onset of symptoms. By the time that I was finally diagnosed, the disease had already leveled lasting complications on my organs, bones and quality of life. I sat with doctors who gave me weeks or months to live and had me meet with palliative care. They told me how to die.
And instead I chose to live.
