Friday, July 19, 2013

Mom's Letter: The Nightmare, Part B

Dear Amber,

It’s been three months since that “nightmare” and I think that I can finally talk about it from my point of view. I’m thankful you awoke from the “nightmare” and that the horror of it is passing with decreasing flashbacks.

I keep replaying that situation over and over in mind, which probably is not healthy for me. It was a perfect storm, and a big one at that! When you called me and told me about your endocrinologist visit, I used every calming technique I had in my arsenal of tools to not show how livid I was at her suggestion of pregnancy and depression. Hearing anger and extreme frustration in my voice would do neither of us any good. Not realizing HOW bad your dizziness and other symptoms were at the time, I remember strongly urging you to go see the PCP.


I waited and waited, and then the phone rang from an unknown TX number. When I answered, it was the PCP receptionist asking what hospital I wanted them to use.

Breathe Salby!

I had just spoken with you less than an hour before. And now the receptionist was asking me what hospital the ambulance and I could meet you at fastest?

WAIT A MINUTE – I’m in WA state!

The receptionist was telling me she didn’t have details other than you were screaming in pain and having seizures, and the doctor instructed her to call and get a hospital recommendation.

Again, remember to breathe!

Keeping my voice calm, I quickly told her you had Addison’s Disease and to give you an emergency injection of Cortisol immediately. She said “Thank you, I’ll tell the doctor” and hung up.

Breathe Salby, breathe!

Silence ensued forever! I sent a couple desperate facebook messages to ask for help from some others who have Addison’s Disease AND more medical knowledge than I do. They said the same thing: “Inject with 100 mg Cortisol, begin saline IV drip, run blood tests after because time is of the essence.” It seemed as if time was standing still.

I called Dad while I checked flights to see how quickly I could get to you. I texted your brother, called him and left a message. Internally I was panicking, my thoughts were racing, my mind was playing out differing scenarios. Then the PCP doctor called me, told me you were incoherent, screaming in pain, and having seizures. I interrupted him and told him to inject you, but the ambulance had already transported you to some ER and he would have his receptionist call me back with the info.

Just had to keep breathing!

I connected with your brother, trying to remain calm as I explained what was happening and that I needed him to meet you at an ER, but didn’t know where yet. The receptionist called me back with the ER name and I relayed that information to your brother. He was on his way to meet you at the ER. Then I contacted three close family friends who live within forty-five minutes of you, and told them what was going on. Two of the three were on their way to that ER. The third friend was out of town about two hours away and volunteered to drop everything if necessary and head your way.

I was having trouble breathing.

I called the ER, spoke to someone, and relayed the information that you have Addison’s, were slipping into a crisis (much worse than ever experienced before), gave instructions to inject immediately with 100 mg Solu-Cortef (the facebook support friends gave me the exact name), and begin an IV saline drip because your life depended on it. She said she would tell the nurse.

Your brother arrived to you in record time and so did two family friends (one met you when you were six, and the other when you were eight years old).

I texted all three (both friends and your brother) detailed emergency protocol information. I called the nurse’s station several times and repeated the standard protocol in this situation. Again, I scanned flights to TX, and made calls and tried in vain to get to you across a two hour time zone difference and what seemed like a world away.


That was a bad few hours in which I was having the worst “nightmare” of my life to date (and I have lived through some doozies). I didn’t know how to help you from so far away. I didn’t know how to pray. I wanted to scream! I wanted to press rewind and begin again.

Just keep breathing!

Our friends worked out a plan with your brother on retrieving your car, and stayed at the hospital until they thought you were stable and out of the woods. I remember texting them about your continuing meds (which the ER doctor totally ignored). Your brother stayed with you that night, for which I was thankful. I still have flashbacks of my conversations with him that night, and I break into cold sweats.

When I recall the “nightmare I still have to remind myself to breathe through my tears. And I calm my mind and say many prayers of thanks because you are clearly alive!

Your brother was an angel in disguise that weekend and I can’t ever thank him enough. Our friends who met you at the ER were also angels to whom I owe much! They have watched you for years become the amazing woman you are today.

I’m breathing better now, and praying prayers of thanks. You are not alone, you are loved, you are cherished and we will always be by your side.


In response to The Nightmare


  1. Just want you to know that after we heard the news,Poppy was seriously thinking of flying to Dallas to take care of the IDIOTS in the ER. He was going to cause a Stink all over Dallas. I had to calm him down. We Love you all so much but he has a real connection with Amber.
    Love Nanny

    1. Thank you Nanny.

      If at any point ANY of the doctors had stopped and followed standard protocol ("Immediately Inject with 100 mg Solu-Cortef"), the severity of this entire situation could have been drastically reduced.

  2. I am going to ask my mom to relay her memories of the day. My whole family was with me. All 12 of them and about that many drs. All shrugging, I don't know what to do.....

    1. I think that is the saddest part about my whole "nightmare." My story, although royally horrifying for me and my family, it isn't unique. It happens far too often with this disease.

      But I also believe firmly believe things are changing for us for the better. Groups like Adrenal Insufficiency United now exist specifically to raise awareness and help educate the medical community so that the number of new "nightmares" decreases drastically.

      Here's to a brighter future!

  3. Oh how glad and forever greatful will I be to you Amber and your mom!!! I am the one that just began to read today 12/5/13 and have responded to a couple posts! I can't believe how some doctors can be, they think they know and if they would just listen sometimes! I am a Nurse as well and I've seen them first hand and how they react when they don't know I am a nurse with AD vs when they know I'm a nurse with Addison's. Is there really even a standard on how to treat an Addison crisis? I saw you mention it but I'm not aware of a standard and honestly am not sure if there is one? This is the sad thing. In health care we have "universal standards" or "protocols" but I'm not sure there is a standard in ERs for how to treat AD patients when in a crisis. If there is a standard they are to follow there isn't one ER here in Omaha, Ne that has that standard. But they should! Scary and I am sorry you even had to go thru some of the things you have just because of a simple lack of knowledge and ego! I will keep reading and keep you close in my thoughts and prayers and if I can ever help just let me know! But you look like your getting this down pretty pat!
    Thanks again for changing my life, for the first time since being diagnosed, I'm excited about my illness! WHAT?!?

    thanks to you and your mom !!!

    1. There IS standard protocol, it is just hidden away in the hundreds of other protocols that the medical field is supposed to be familiar with. The basic gist of it is "Inject 100 mg Solu-Cortef immediately, no questions asked. Start IV fluids." Groups like Adrenal Insufficiency United are working on making this protocol more well known because it could very easily be the difference between our life and our death. AIU even puts together an Emergency Kit that can be sent to your local ER/Hospital (Go to and then click on "Purchase Emergency Kit" towards the top right of the page).

      And I LOVE hearing about people with AD working in the medical field. I'm convinced that makes you such a better nurse because you understand the importance of listening to the patient when they have a rare disease! My nurse on the hospital floor (once I got out of that dreadful ER) was so kind and compassionate. She stated she understood what it was like to live with something rare, however she did not mention what it was. It filled me with more confidence.

      Please continue to comment on my blog :) I'm happy you found my story!


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