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.

Sigh...

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.

Breathe!

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.

Love,
Mom

In response to The Nightmare



Sunday, July 14, 2013

Mom's Letter: The Nightmare, Part A

Dear Amber,

My emotions are running rampant and rendering me speechless.

Not because I have nothing to say, but because I wish to choose carefully which thoughts and words to express.

I will write a Part B soon.

I love you always,
Mom

In response to The Nightmare.
Are you ready for Part B?

Thursday, July 4, 2013

Steady State

Flashbacks from college: Quick! Mathematical Analysis!
I am an electrical engineer so charts like this excite me greatly! It's an RLC circuit! Why would I want to discuss a transient circuit on a blog about living with a chronic disease? Let's look at the response of this circuit to any event.

The input is a square wave. The output does not look like a square wave.
People often state that life is like a roller coaster. If they are more mathematically inclined, life is a sine wave. I like to think of my life with Adrenal Insufficiency like the response of an underdamped transient circuit. My goal? To approach steady state. I want to stabilize my medicine, my emotions, my health. I want to live that "normal life." Sadly, there are some drastic swings before I can reach steady state. April 19th and the adventure following represents one of those swings. But I am happy to report that life is approaching steady state again!

The ζ controls how violently the response wiggles.
This electrical engineering graph can describe everyone's life. Every time there is an event or a change, we react. And each reaction is different. Our ζ varies, which controls the amount of oscillation. There are some living with Adrenal Insufficiency who are able to receive the diagnosis, start the medicine, and feel amazing (critically damped, ζ = 1). Lucky ducks! I had to go through YEARS of experimentation and trial and error before I was able to "stabilize." 

And, I still have bad days. But during those wild oscillations (i.e. the super squiggly part on the graph), I must keep the big picture in mind. My adventure of the last two months was difficult. It started out with a nightmare and continued with an uncountable amount of doctors' appointments and tests. But my life is stabilizing again. I see the "steady state" in sight. And that excites me.

What is the moral of the story? Do not give up hope. It royally stinks when life is spinning out of control, be it due to a chronic disease, stress with a job, or trouble with a relationship. But don't give up. Things will eventually get better.

I will always fight to be Clearly Alive.