Saturday, August 29, 2015

Our Last Weekend in Malaysia: Part Two

This is a continuation of a previous post. If you have not read part one, you can find it here.

Zofran only lasts for four hours. At exactly the four hour mark, I vomited.

I vomited after battling a migraine and several other symptoms of an adrenal crisis for the past six hours. My situation was rapidly deteriorating and priority was escalating. By this point, my body was starting to seize up and I could not control my convulsing.

My husband knew that the next steps would be my emergency injection and a trip to the hospital. While I was vomiting, he called our hotel concierge and informed them that we needed a taxi waiting for us to immediately transport us to Gleneagles Hospital. He then returned to my side as I slowly maneuvered from the restroom and back onto the bed.

"Ok Amber. I am going to mix up your shot, inject you, and then we are going to go to the hospital."

"No... I don't want it." I meekly whimpered. I never want to admit that I need to receive that emergency injection. That injection symbolizes how sick I am, and I try to downplay it. If I had my way, I would just wait and see or try to just sleep it off. This is so incredibly dangerous and can potentially cost me my life.

My husband had the absolute perfect response to my irrational and very dangerous denial. "Ok Amber. How about we think about it?"

"Ok, let's think about it." His words allowed me to relax. I closed my eyes. I stopped fighting him. I was no longer worried about being stabbed with a rather large needle.

Suddenly, I felt pain radiating from my thigh. "OW! I thought we were going to think about it?!"

"I did think about it. And I think you need it."

A few days after this event and when I was stabilized, my husband informed me that he had started mixing up my solu-cortef vial the moment I vomited. There was no doubt in his mind that he had to inject me. He had only given me the illusion of choice in this situation so that I would relax enough in order to not further injure us both. It was absolutely brilliant.

Although the injection momentarily stopped the convulsing, I was still not out of the danger zone. I could not see the world around me and there was absolutely no way I could walk. My husband carried me to the elevator, as I lay limp in his arms. We made it down to the lobby where there was a taxi waiting for us. After one look at me, the driver immediately knew that he had to transport us to the hospital as fast as possible. My life depended on it.

When I arrived at the A&E, I vomited again. The staff attempted to triage me, but we showed them documentation provided by AIU. As soon as the nurse read the simple three steps on "3 Ways to Save Lives," she skipped all formal protocol and took me immediately back to "Resuscitation 1."

My BP and HR are normally much lower than this. When I slip towards a crisis, my BP normally spikes up as my body dumps adrenaline into my system to attempt to stabilize. If I do not receive treatment quickly, my BP will drop potentially causing irreversible damage to my body.
This entire experience is such a blur to me.

I still could not open my eyes at this point. The outside world was too overwhelming.
I remember them sticking the IV in my hand. I remember that IV hurting. I remember noticing that blood was starting to backfill up the IV line. The nurses took care of that rather quickly.

They had put the blood pressure cuff on the same side as the IV. Every time the machine tried to read my BP, it would force blood back into the IV line.
I remember hearing the voice of an incredibly kind A&E doctor informing me that he had already spoke with my endocrinologist to touch base with her.

"But... it's like 2 am? You were able to reach her on the phone?"

"Of course. She's you're doctor. When was the last time you saw her?"

"Three days ago on Wednesday... to thank her for treating me for the past six months... and to inform her that I was returning to America soon."

"Well she and I both agree that you need to remain in the hospital for a few days to be monitored."

And so it was decided. Our last weekend in Malaysia was to be spent in the hospital.

Continued here.

Sunday, August 16, 2015

Our Last Weekend In Malaysia: Part One

Exactly one year ago, I was hospitalized in Malaysia for an Adrenal Crisis triggered by food poisoning. Although I alluded to the adventure on my facebook page shortly after it happened, I never wrote about it on this blog. I believe I finally have the strength to document that adventure. Please note that this is an incredibly difficult experience for me to recall.

To give some background, my company sent several of us on a six month international work assignment scattered throughout several different countries. For our last weekend in Malaysia, one of my coworkers decided to visit us from his work assignment in the Philippines. This gave us an excuse to do all of the tourist things that we had previously neglected to complete.

Friday night, we went to the Kuala Lumpur night market. I found it hilarious as the hawkers attempted to sell me noticeably fake jewelry and purses because "Every girl needs this." Actually, I don't. Please leave me alone and please do not shout things directly at my face.

The co-worker, the husband, and I on Jalan Petaling.
On Saturday, we went to Central Market to finish up our Christmas shopping. We decided to eat lunch in their food court. I have mentioned previously how incredibly difficult it was to find gluten free food in Malaysia. It was a large guessing game in which I just hoped I did not get sick. I was excited to see Chicken Rice because for the most part that is a safe meal for me. I decided to eat at a different restaurant than both my husband and my co-worker. In hind-sight, this turned out to be a very bad move.

My husband and I shared a "Mango Ice Floss" for dessert.
After we finished up our lunch, we headed to a butterfly garden. It was incredibly hot outside and we were doing a great deal of walking. I began to develop a slight headache. This should have been a warning sign to me, but I chose to ignore it.

I'd rank my headache as a level 2-3 at this point.
We continued walking all around this out door park. We found another flower garden and eventually discovered the National Planetarium. I welcomed the air conditioned break, as my headache was approaching a migraine status. I tried to take more medicine and drink more water, but it didn't seem to have much of an effect.

Outside of the planetarium they had a miniaturized Stonehenge.
I am clutching my water and leaning against the wall for support because I did not feel well.
After we finished up at the planetarium, I requested that we headed back towards our home. We could take the monorail back to the Pavilions mall where I knew of a safe restaurant to eat at for dinner. That monorail ride was incredibly difficult for me as my migraine continued to worsen. I somehow made it to the restaurant.

My co-worker, husband, and I all ordered food. When my food came I was only able to swallow two bites. I was scared that I would instantly vomit it all back up. I asked the waiter to immediately box up my meal and told my husband that I had to return home. It was only a ten minute walk and I assured him that I could do it by myself. He should continue dinner with my co-worker. I might have down played how horrible I was feeling because I did not want to worry my visiting co-worker.

I somehow managed to walk home even though my migraine was getting progressively worse and I was having a difficult time seeing things. As soon as I was back in the safety of our hotel room, I took a zofran, increased my cortisol pump rates, and even swallowed some oral HC in an attempt to avoid a full out adrenal crisis.

My husband soon returned with my co-worker who had plans to meet up with another one of our co-workers to experience some Kuala Lumpur night life. I kindly requested my husband to remain with me because I knew I was in bad shape and I was scared. I was incredibly dizzy, horribly nauseated, and extremely sensitive to any form of sensory input, be it lights, sounds, or smells. I could not see straight and my migraine made it near impossible for me to move.

I am so unbelievably thankful that my husband remained by my side.

Continued here.

Saturday, August 8, 2015

A Phone Call for Permission

My mom, my husband, and I all arrived in Arizona the Wednesday before my wedding. The sun was shining and the weather was absolutely beautiful. The forecast for my wedding day was not looking as promising. Rain storms from California were predicted to drench Arizona that Saturday. 

Forecast for March 1st, 2014. 100% chance of showers.
PS- It hadn't rained there in over five months.
By Thursday, my mom and I were confident that we would be utilizing the venue's rainy day contingency plan. Although I was a little disappointed that I was not going to get the outdoor desert wedding I had dreamed about, I decided to laugh at the absurdity of the situation instead.

We still had the rehearsal at the outdoor space the day before.
Photo by Rebekah Sampson Photography. 2014.
I picked a desert for an outdoor destination wedding.

The storm was threatening to roll in right before the start of the ceremony.
Photo by Rebekah Sampson Photography. 2014.
The day before the wedding had perfectly sunny and beautiful weather.

Beautifully blue skies with just the perfect amount of cloud cover.
February 2014.
The day of the wedding had monsoon rains.

And then the rain came!
Photo by Rebekah Sampson Photography. 2014.
The day after the wedding had perfectly sunny and beautiful weather.

Photo from March 2nd, 2014. Look at the beautiful sky!
Photo by Rebekah Sampson Photography. 2014.
HOW can you not laugh at the absurdity of that?

The monsoon rain meant that we could get no photos of just my husband and I on the day of the wedding. When she realized the weather forecast, our amazing wedding photographer Rebekah Sampson suggested we schedule a "day after" shoot so that my husband and I could still have photos together. I'm so thankful my dress was comfortable and my wedding flowers were paper considering I would have to don the same outfit again! Rebekah was willing to meet us at our resort, but she recommended that my mom call the resort first and receive permission to have professional photographs taken on the property, especially because our wedding was not held at their venue.

My mom made the call while I was in the car with her. She explained that we were from out of state, but we used to live in Arizona. She mentioned how my dream wedding was an outdoor wedding in the desert. She then chuckled while she was on the phone and pointed out that the weather was refusing to cooperate. We were going to be unable to have any outdoor pictures taken on the day of our ceremony. But she also mentioned our photographer was willing to hold another session the day after, when the forecast was promised to be sunny and beautiful.

She also expressed how I was far from the normal bride. She spoke of how my Adrenal Insufficiency almost killed me April of 2013. But it didn't. She passionately recalled how I was unable to live independently for two months as she had to move in with me until I regained my strength. We had no idea how long it would take me to recover. Yet here we were, eleven months later, and I was about to marry one of my closest friends and then travel across the world to move to Malaysia for a six month international work assignment.

The resort happily granted permission to have professional photographs taken at their location. They were thrilled to be a part of such an amazing story.

After my mom hung up the phone, she apologized to me. She was sharing my story, my medical journey, without my explicit permission. She asked if that was ok for her to disclose my medical journey to strangers. I told her in this situation it was ok. But it was a little surreal to listen to her tell others.

I did almost die on April 19th, 2013.

Every now and then, that fact still serves as a pretty severe reality check.

Yet here I was, March of 2014, preparing to marry my running buddy and then immediately move to Malaysia to start an entirely new chapter in this adventure called life. The scariest day in my life paved the way for some of the most amazing blessings in my life.

Oh look, another sunny day in the desert!
Photo by Rebekah Sampson Photography. 2014.
I was Clearly Alive, and so clearly blessed.

Photo by Rebekah Sampson Photography. 2014.