The Nightmare, Revisited

Doctors sometimes downplay an Adrenal Crisis. In their mind, if I take my medicine daily, I should never have one. Now there are certain triggers that I must watch out for. If I am running a fever, vomiting, or suffer from an unexpected yet severe injury, I must seek extra medical help immediately otherwise I could quickly die. But day to day living should not send me into a crisis. Recall Endo 3’s phone call with me in the ER, “Amber, I don’t think there was any way you could have gone into a crisis. You take your medicine daily. No. Are you sure you aren’t depressed?”

One of the trickiest things about this disease is the health decline happens so gradually that many people do not fully realize how sick they are until it is too late. On April 19th, 2013 I did not wake up feeling amazing and then suddenly crash towards full blown crisis. My health had been slowly declining for months. Because it was so gradual, no one prioritized it. I did not even have the words to express how bad it had gotten.

It all started with weight loss.

adrenal crisis

Side note: I also went through many different hair styles my last year of college.
July 2011. Aug 2011. March 2012. May 2012.
I was shocked when I fit into that size four dress. I tried it on as a challenge.

I started losing weight at the beginning of my senior year of college. I didn’t change anything about my medicine, diet, or lifestyle. I didn’t even realize it until a couple people started commenting. When I finally weighed myself, I had dropped a couple pounds! I graduated college and began working full time August 2012.

The problem came in the fact that I was still losing weight! I couldn’t rationalize it, which made me nervous. Add to the fact that any time I ate a meal I felt sick. I could never figure out what part of the meal was making me feel sick, I just dreaded eating.

weight loss

Photo from my birthday dinner October 2012. I had such a difficult time eating food that night.

 

I kept getting sick.

But not only was I feeling sick, I was also getting sick. An ER trip in November ruined my two year ER free streak. Christmas, I was sick again. I actually stress dosed my medicine on Christmas Eve and still slept through the entire day. I could not move from my bed. New Years, again, sick. I came really close to collapsing in the urgent care clinic on January 2nd. (Want faster medical service? Turn super pale and black out in front of the waiting room. That’ll get you noticed!)

And the weight kept coming off.

Female engineers

Photo from November 2012. My coworker and I realized we were matching one day. I was so fatigued I could not stand up straight. Also, those size four pants were falling off of me.

I ended up losing a little over 30 pounds and dropping four pants sizes. While some women rejoice at that thought, it frightened me. My weight is a function of my health. If my medicine is correct, I should neither gain nor loose weight. Yet I was a 5’8″ female with size fours falling off of me. Something was wrong.

 

The Medical Community was no help.

I tried reaching out for help but was met with answers such as “anxiety” or “depression.”

Medical community, why are you so quick to label?

Yes, I had started a new stressful job. Yes, I told you that eating food made me feel sick so I dreaded eating. Yes, I had lost 30 lbs without trying. But do not call that depression! I, a fairly intelligent human being, am telling you that it is not depression. Look for the true root cause!

 

And the the Nightmare happened.

The week of the nightmare, I knew something was wrong. Several co-workers were concerned about me because my dizziness had increased drastically. I actually got super dizzy during a run and fell, bloodying up both of my knees and my hands.

adrenal crisis

I’m smiling in this picture as my knees are still bleeding. I was so dizzy and out of it that Wednesday before my crisis.
Photo from April 2013.

I knew I was on very thin ice. Heck, that’s why I went to my endo on April 19th, 2013! That’s why I took the appointment with the PCP immediately afterwards. Yet no one realized truly how sick I was until the seizures hit due to the impending crisis. And they didn’t realize how desperately I needed help to become stable again until I was in the ER two weeks later.

Priority was finally escalated. I could no longer drive. I would get energy crashes that would cause me to either black out or barely be able to move and unable to speak. I was scared to live alone so my mom moved back in with me for half of May and all of June.

 

The Answers

Eight different specialists, countless doctors appointments, and who knows how many medical tests later, we have answers. What caused the Nightmare on April 19th, 2013?

  1. My steroid dose was much too low. I was on less than half of the recommended daily dose for my medical condition.
  2. I was being poisoned by the generic hydrocortisone Qualitest (PAR Pharmaceuticals). Every single time I took my life sustaining medicine, I was having a reaction to it. Talk about frightening.
  3. I was severely B12 deficientCheck out the symptoms of low B12. I’ll most likely remain on the B12 shots for life.
  4. I have a gluten sensitivity. Take that medical community! I wasn’t feeling sick after every meal because of depression! Try food sensitivity! </rant>
  5. I was diagnosed with POTS. It turns out my heart rate should not jump 40-50 bpm any time I change position.

 

The Actions

Each of these answers contain actions that I can take to improve my quality of life. We’ve increased my daily steroid dosage. I will now only take brand name Cortef. I have gotten used to giving myself B12 shots. I am eating Gluten Free as of September 1st, 2013.

We’re still working on getting the POTS under control. But honestly, I’ve been suffering with that for as long as I can remember. Just don’t expect me to stand up quickly. I’ll fall over.

 

I am Clearly Alive.

While the climatic crash in the PCP’s office happened quickly, I had been slowly heading towards the adrenal crisis for well over a year. These types of crises never just happen. They are always triggered. But knowing the trigger allows you to prevent the next one. These life style changes will allow me to remain Clearly Alive for quite a while. I haven’t felt this “healthy” ever. I am in a really good spot, and that is exciting.

PS- On the weight thing, I have gained back over 20 lbs. I’m at a healthy weight again!

healthy weight

Photo from July 2013. It was windy in the Windy City.

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