The Nightmare, Five Years Later
Although I am Clearly Alive, I did almost die at age twenty-three.
That experience changed me. Most people do not wrestle with their own mortality at such a young age. What did your life look like at age twenty-three? What were your goals? Your ambitions? Your dreams? Your desires? Were they focused on avoiding death?
April 19th, 2013 served as a drastic refocusing of my life.
I know many who can personally relate to that drastic refocusing. They have their own individual “I should be dead” stories. Within our survivor community, we have an inexplicable passion that looks absolutely ridiculous to the outside world.
We have a difficult disease to manage and yet you will find us…
Completing Marathons.
Elesha after the Surf City Half Marathon in Huntington Beach, CA.
2017
Exploring Alaska.
Eva at Tangled Lakes, Alaska.
2014
Earning advanced degrees.
Anne Marie worked full time as a MediVac flight nurse while earning her Dual Masters in Nursing.
2016
Publishing books.
Wendy showing off one of her books from a hospital bed in Hong Kong.
2018
The outside world tells us to slow down. To let up. To back off. To take it easy. But here’s the thing…
We cannot.
We understand how precious our life is and we are determined to not waste it.
We love deeply.
We encourage incessantly.
We explore passionately.
We dream of turning our pain, our struggles, our journey into hope for others.
We are Clearly Alive.
May our passion be infectious. May our joy be contagious. May our focus inspire you to not take your life for granted.
Five years ago, I almost died.
Today, I am Clearly Alive.
I challenge y’all to join with me.
2018
No nightmare will ever silence this voice.
Wayne from Texas
Amber you do inspire me, not to take life, or the opportunities of a certain day, for granted. You inspire me in many ways. Think how many young lives are enriched by Wendy's books, by her bringing understanding of complex medical issues to a level where the children understand it. Anne Marie is devoted to helping others, as a nurse, while continuously dealing with her own medical issues. I've taken up running again, after being inspired by you. Elesha and Eva must inspire others to enjoy their lives, by their own demonstrations of life.
I look forward to hearing your voice often in the future.
Wayne from Texas
Rob
I just want to thank you for sharing your stories and your expertise. It is really helpful to know what to expect when your are diagnosed with this condition. It is extremely important to prove to other people with AI that you really can have a normal or better than normal life. A lot of newbies think they have a new normal and their life will never be the same.
Your site is a wealth of information and I have learned a lot about AI. I especially like the dosage calculator. I have made some changes based on this and my morning BP is much better. Although, I have learned to tolerate low BP 🙂 I think more AI patients should try the pump. I wish the barrier to this was not so high.
I wish I had access to this information when I was diagnosed 31-years ago.
BTW: I wish that your ER experience was the exception but sadly it is not.
Thanks again.
Rob
Marti
Awesome girl! Living life to the fullest with a great attitude. Inspiring others to go forward!
Judit Tardi
Hi Amber, my name is Judy and I am writing from NZ where there is only a small number of us. I went to my GP post diagnosis in the hospital to get injections to carry with me and she refused to do it. She said if you need help, ring the ambulance. She didn’t understand Addison’s at all and she was looking it up on the screen while I was there.
Luckily, I have just read your blog and because of it, I will have to find a better GP because I also want to be alive and well.
Thank you so much for sharing your journey.
Warmest regards
Judy from Christchurch, NZ
Vicky Sloat
Thank you Amber! I’m truly, deeply moved by your writings- thank you so much. Your nightmare story is a true wake up call for me. I assumed everyone knows about Addisons.
Can’t wait to read more on the site !
You’re so amazing and inspiring!