On Sunday, June 27, 2021, at 4:30am, I almost died. Again.
Addison’s Disease, a life threatening & fatal disease that has tried to kill me multiple times, is not only rare & misunderstood, I fear will be the reason my 6 year old grows up without a Mommy.
We DESPERATELY need an auto-injector, similar to an epi-pen, with a dual-chamber syringe, for intramuscular injection.
In an adrenal crisis, we often have mere minutes, if not seconds, to quickly inject our life saving medication, to prevent shock, coma & death.
The current, standard emergency injection of Solu-cortef is an Act-O-Vial, which requires multiple steps to mix, sterilize, draw & inject. It requires complete focus and comprehension to administer.
That’s lovely, except that in my experience, every single crisis I have survived, I have never been able to inject myself. Currently, when I go into crisis, I do not have the ability to save my own life. All I can do is hope that those around me, have the presence of mind to follow the directions on my emergency injection. That is, IF, they know I need one in the first place.
On Sunday, the crisis came on suddenly, without warning. Within seconds, my blood pressure dropped, I had severe chest pain, and could not breathe. I fought as hard as I could to get through the kitchen, down the hallway, as close to help as possible. I lost all feeling in my body, the ability to hear, and finally, my vision. I heard my own screams, muffled and far in the distance, completely detached from my body, before collapsing. Total darkness. Again. Before it all went black, I was certain I would not wake up this time.
God had other plans. My eyes did open. But I could not speak, could not move, could not breathe. That’s what happens when your heart & brain are starved of oxygen. In his sleepy state, my husband was able to administer my injection, thanks to having done it multiple times, before the destiny of an Addisonian played out in my body. Seizures, shock, coma. And the inescapable....death.
What then, if my 6 year old finds me next? She is quite resilient, and has been coached on how to call 911, has memorized our address, and understands how to stay on the phone with dispatch until paramedics arrive. She knows exactly where to lead them, the stationary First Aid kit, that hangs on the wall of our entryway, with Mommy’s life saving medication...
”But Mommy, I don’t know how to do your injection...”
Of course you don’t, Angel. Because you should be outside playing, dreaming, running free, without a care in the world. Instead, you carry the weight of our reality on your tiny little shoulders.
Even greater, is the fear that the paramedics that do show up, are just like the last one I had, who had never heard of Addison’s, didn’t know what Solu-cortef was, and asked ME in my crisis state, to explain to him what to do. After, of course, sharing with me it was his first day on the job.
This well meaning, rookie paramedic, attempted to start an IV on the bumpy ride to the hospital. My veins had already collapsed. Instead, he caused an injury to the only good vein I had left, which meant the team at the hospital had no chance of finding a vein in a timely manner. I didn’t have time left to begin with.
This is one of several reasons I now have a Port, a central line that goes directly to my heart, so that when an IV of life saving medication is needed, I don’t have to leave my future, or my child’s, in the hands of a nervous and inexperienced EMT. Hey, we all have to start somewhere.
Imagine. If an epi pen-like, dual-chamber, auto injector were available, I could coach my 6 year old on how to administer it, while we wait for paramedics to come. At least then, I’d have a fighting chance.
Yet, here we are. It’s 2021. The last person with any real influence to suffer from Addison’s Disease, was president JFK. I’ll never pretend to have that kind of reach. I may be low on cortisol, but I am not delusional.
I will, however, fight until my last breath, to advocate not just for myself, and my sweet little girl, but for the countless others who suffer in silence with Addison’s Disease.My cardiologist, looked me square in the eyes, and said I was lucky to be alive, and that the only reason I survived this time, was because my heart is so strong from dancing professionally. I guess all those years as a Radio City Rockette paid off after all.
He left one minor detail out.
My eyes opened again, because there is now a calling on my life much bigger than me. God has a plan indeed. I serve a MIGHTY GOD, who’s angels have kept me alive thus far.
Calling on ALL angels, I will scream from the rooftops, fight like a superhero on behalf of EVERY Addison’s Disease Survivor that ever has been or ever will be, and forge forward to demand change.If I still have a pulse, I have a purpose. And so do you.
I don’t know about you, but I’m not wasting mine.If you or someone you know has Addison’s Disease, SIGN THIS PETITION. Share on social media. Email it to your friends. Keep sharing until change happens. Too many lives have been lost to this horrifying disease.
Though I know God’s not done with me yet, I could be next. If I’m next in line to meet my maker, at least I’ll know I tried.
Please. It’s 2021. There’s no excuse. We, as a human race, are better than this. There are more than enough resources to develop an emergency injection of Solu-cortef that can be given with the push of a button.
There are many other things we need, such as a way to test our daily cortisol levels, much like a diabetic can test blood sugar, but I won’t get ahead of myself. One thing at a time.
#addisonswarriorsunite
#lyricalforamiracle
Gratitude in advance, for all who sign & share.
Love & Light to all,
Dre Lakin
