Saturday, August 30, 2014

Adios KL!

If you look at all of the pictures from the past six months, it appears that we have been living the dream! We have traveled all over South East Asia managing to make it to seven countries within our first six months of marriage. With each passport stamp, I prove to the world that this Steroid Dependent girl is Clearly Alive!

ATVing through the Malaysian Jungle in April.
But pictures never tell the entire story. In all honestly, I am exhausted. I grew tired of dealing with bugs in the restrooms. I grew tired of trying to explain "Gluten Free" in a culture that does not understand it and only tells you what they think you want to hear. I disliked living on a street with night clubs and cars constantly honking their horns at all hours of the night. I am ready to be reunited with my Olive Thief.

Cameron Highlands Tea Plantation in Malaysia in June.
However, I am incredibly thankful for this opportunity to live in Malaysia. What a crazy way to jump start a marriage! My dear husband definitely returned to America with more gray hairs than when he left. How many people have the opportunity to say, "Oh yeah, I saved my wife's life not once but TWICE by giving her an emergency injection of solu-cortef. No big deal." Granted, not many people also have the opportunity to say, "Oh yeah, I rode an elephant and walked a tiger on a leash." It has been a crazy six months.

Thailand in July.
I have learned a great deal about my Primary Adrenal Insufficiency and the importance of cortisol. Each lesson solidified the importance of a healthy life style which is so much more than "just swallow pills." We must manage our stress levels. We must eat a balanced diet. We must surround ourselves with solid friendships.

Singapore in April.
I have returned to America a much different person than when I left.

Hong Kong Disney Land in May.
Watch out world. This Clearly Alive girl is going to change it.

Myanmar in July.
T-SHIRT UPDATE: My husband's wonderful ALS video generated much discussion about the "Ask Me about Life-Saving Steroids" t-shirts. After much behind the scenes work, I found a way to sustainable be able to offer them to y'all.

Check them out here! 

Zazzle provides 117 different styles of shirts including hoodies, jackets, long sleeves, and even sizes for infants and children! Let's raise some awareness! I will also donate proceeds to either AIU or NADF.

Friday, August 8, 2014

The IV at the Airport

I may appear fearless with regards to Adrenal Insufficiency, but I'm not. There are two scenarios that absolutely terrify me:
  1. Beginning to crash towards an Adrenal Crisis in a place where no one knows me or understands Adrenal Insufficiency
  2. Beginning to crash towards an Adrenal Crisis while flying in an airplane.
My first fear actualized on April 19th, 2013. My second fear actualized on June 17th, 2014.

We were returning to Malaysia after attending a friend's wedding. Although the wedding was in Pohang, we flew in and out of Incheon Airport. The day before our flight, we ended up doing a five hour bus ride, two hours on the subway, a brief stop in Seoul for dinner with a friend, another hour plus on a train to get to Incheon airport, and finally about forty-five minutes to figure out how to get picked up by our hotel. We did not go to bed until after 1:00AM, and we had to be awake by 7:00AM to catch our international flight.

On the bus from Pohang to Seoul.
I give that information to set the stage. Traveling is stressful on the body.

Oh Malaysia Airlines.
The next day, we had our six hour flight from Seoul on Malaysia Airlines. They advertise a "Gluten Free" meal yet they have absolutely no concept of what that actually means. On our flight to Korea, their definition of "Gluten Free" was a vegetarian sandwich on a buttered croissant with the "GF" sticker. Apparently stickers magically make bread not have gluten. I wish I had gotten a picture of it.

The meal served this time looked more gluten free, but it was questionable seafood. I went against my better judgement and ate it because I was hungry. About an hour after the meal, I began to get a really bad migraine. I did not realize the full severity of my pain until I went to use the restroom. I began to shake and have trouble controlling my breathing.

I was absolutely terrified.

I made it back to my seat and swallowed 20 mg of Cortef. We still had over two hours left and we were flying over open water. I felt so nauseated, which was only exacerbated by the turbulent flight. I knew I could not vomit but I was wary of taking a Zofran. Those knock me out and I still had to make it through customs. My husband urged me to take the Zofran promising me that he would get me home alive.

My husband then informed a flight attendant that we would need a wheelchair waiting for us at the gate. At first, she told him no because we had not reserved one in Seoul. He sternly told her that she better have one waiting for me because this was a medical emergency.

The words "medical emergency" coupled with a girl shaking, crying, and unable to open her eyes definitely gets the attention of all the cabin crew. They swarmed us. I stayed curled up in a ball as I became more and more claustrophobic. My husband sternly stated, "What she needs now is space." They instantly scattered, but not before handing my husband my "gluten free" snack. He took a picture of it to show me later.

Wheat. But the "GF" sticker makes it all ok, yes?
No. Absolutely not.
I could barely walk off the plane to get to the wheelchair. The escort took us to the 24 hour sick bay. The entire ride was a blur. My world was going dark. I remember my husband asking me if I needed my emergency shot. I could not answer him. I did not know what to do. My body was shutting down.

My daily health journal, my used emergency shot, my purse, and my bag of emergency medicine.
Once I was on the tiny hospital bed, my husband injected the solu-cortef into my thigh. I finally stopped shaking, but my migraine returned with a vengeance. My husband kept asking the nurse if she had saline fluids but she said no. My husband knew I was badly dehydrated. He left to hunt down an electrolyte drink.

I did not fit on the bed. I was too tall.
While he was gone, I heard a new voice in the room that sounded very "doctor" like. I faintly called out to get the doctor's attention. I weakly asked him if he could start IV fluids explaining that I have Primary Adrenal Insufficiency and my husband had already given me 100 mg of solu-cortef. He said he could, but it would cost me RM160 because this was a private clinic. $50USD for IV fluids? DONE!

No fancy machines or beeping equipment. Just a plastic bottle and a tube.
My husband returned as the doctor was prepping my wrist for the IV. I had to be in terrible shape because the doctor mentioned how bad the veins in my arms were. Normally I am told that I have great veins for IV's.

The doctor got the IV first prick. I am always incredibly grateful when they do that.
The doctor was pleased when he saw the color return to my face. I was free to go via wheelchair escort. That second wheelchair ride involved several elevators, loud noises, and a tram to customs right as the zofran was wearing off. I ended up vomiting in a trash can next to the Malaysia Airlines baggage reclaim desk. My bad, y'all.

This was the very first time in my life that I have vomited with extra steroids and fluids already in my system. It was so odd. It did not hurt and I actually felt better afterwards. I was still weak and exhausted, but my body had finally rid itself of the nasty Malaysia Airlines food. Yet our commute wasn't over. We still had over an hour taxi ride back to our home in Kuala Lumpur. Once back at our extended stay hotel, I instantly went to sleep.

I have always been terrified of having my Adrenal Insufficiency flair up on a long flight. It finally happened. And I survived. This in no way lessons my love of traveling. However, it does intensify my extreme distrust of airplane food. From now on, I will only eat fruit on flights.

The snack from our most recent flight to Thailand.
This was the fruit only meal, but labeled as "GF."
I honestly believe they put the "GF" sticker on whatever random box they feel like.
I am also incredibly grateful for my husband. His presence and action in the situation allowed this to only encompass one of my terrifying scenarios, and not both.

Friday, August 1, 2014


Two of my friends got engaged in March. They decided to have their wedding in June at the university where I studied abroad. My husband and I realized that we could go! I would be returning to Korea for the first time in five years!

Clearly Alive in downtown Pohang.
During my semester abroad in Korea in 2009, I struggled greatly. Looking back, I realize that most of the struggles were due to less than ideal treatment for my Primary Adrenal Insufficiency. My dose was too low.

Cortisol greatly effects my emotional response. Too little cortisol causes me to be a crying mess with uncontrollable anxiety. I am honestly not quite sure how I survived that semester, but I do know that I learned many lessons through those experiences. When I returned stateside, I ended up in the ER three times in less than a year. I would prefer to not end up in the ER when I return from Malaysia in just a few weeks.

The door to the bathroom at the guest house in Seoul.
Note the special bathroom shoes.
For the first night of our week in Korea, we stayed in a more traditional guest house in Seoul. I wanted my husband to experience a bit of Korean culture like the rules with shoes. Wear your shoes here, BUT NOT HERE. By the way, the bathroom has special shoes. And those special shoes will be too small for your American feet.

Korean BBQ. Mmmm. Machiso.
I loved being able to show my husband some of the places that I remembered from five years ago. It was interesting for me to walk back down the same streets and recall how much my anxiety had controlled me and colored every experience. I am much healthier now.

Visiting Jukdo Market.
Now, there were some hiccups with this trip. We got lost trying to find our hotel in Pohang. That city has changed a lot in the past five years. I also accidentally ate barley mixed with rice for one meal. I was knocked out for about five hours. If I ever doubted my gluten intolerance, that proved that I very much need to be gluten free.

Shaved ice and berries. Gluten free and amazing.
Additionally, we took the wrong bus when we left Pohang. There are two types of buses that travel between cities and we meant to take the express bus. We still ended up back in Seoul, but it added about three hours onto our overall commute. I did not realize the full extent of how taxing all of the traveling and the emotional stress was on my body. It set the stage for my next adventure at the KL International Airport.

My dear friend is now married!
PS- Totally rocking my medical alert bracelet in this picture.