Sunday, December 28, 2014

2014, A Recap

As I sit back and ponder 2014, all I can say is wow. 2013 was extremely scary for me in terms of medical drama. Although 2014 did have a few scary moments, it was filled with so many amazing moments. I continued to prove to myself and to prove to the world how I am Clearly Alive. Below is my month by month recap.


Goofing off in the Desert during our Engagement Photo Shoot.
January 2014 started out much better than January 2013. There were no emergency room visits or near collapses. In fact, I actually traveled to Arizona and California to take care of some wedding things and meet my husband's family for the first time. I also participated in the very first Adrenal Insufficiency meeting in Addison, TX where eleven of us gathered for food and fellowship. I was reminded of how beautiful it is to be able to chat with others who can relate to my journey. We might live with a rare disease, but we do not need to live with it in isolation!


Too Cold To Hold.
SO MUCH COLDER than last year.
In February, I ran the same five mile race that I did last year. But this time my running buddy was at my side. In hindsight, I should have increased the total amount of HC I took for the race because that evening was rather rough. Given all of the stress that was rapidly approaching (a wedding, an international move, a new job assignment), I increased the total amount of HC that I took daily. And guess what? My constant stomach pain went away. Food no longer made me feel sick! My blood pressure and POTS stabilized. Symptoms that I was told repeatedly did not relate to my Adrenal Insufficiency did indeed directly tie back to improper cortisol coverage. I can now stand up without fear of blacking out! That in and of itself is a major victory.


The Husband and I.
On March 1st 2014, I married my best friend. We had purposefully chosen to have an outdoor wedding in the desert, but the desert had other plans for us. However, the wedding was absolutely perfect and the desert down-pour made for a more amazing story. Because my husband and I are insane, we left America exactly three days after the wedding to begin our six month adventure on the other side of the world.


The Husband and I in Singapore.
April 19th marked the one year anniversary of my nightmare. I had no concept of how long it would take me to recover and I can still openly admit that I have not regained my full strength. I also don't think I ever will. Each time I head towards an adrenal crisis, a bit of my life is stolen from me. However, I am in a much better place health wise. My husband and I also took a spontaneous trip to Singapore where we had the pleasure of meeting Kieara of Glee Kitchen. If you ever go to Singapore, I highly recommend you try her food!


Dinner in Hong Kong with a fellow AI'er and her support network.
In May, I began to show signs of too much cortisol and started the wean down to appropriate levels. Cortisol is a very interesting drug. The medical community must understand that those of us with Adrenal Insufficiency do not want to overdose or under-dose our medicine. I want to take the right amount for my body and my body will show me what that amount is if I listen. There is not one magical textbook dose. I also had the ability to meet Wendy and her family in Hong Kong. I used to feel isolated and alone in my journey, but that is so far from the truth! If you feel alone and isolated, please take courage in the fact that you are not. There are others who do understand.


FYI: IV's in the wrist or hand are one of the most painful spots for me.
But I was so dehydrated, this was the only spot the doctor could get.
In June, I had the opportunity to return to Korea for the first time in five years. While it was fun showing my husband some of the same spots from my study abroad, the stress of the trip (emotional, physical, mental) eventually caught up with me and I narrowly staved off an adrenal crisis with an emergency injection and IV fluids in the airport. One of my biggest fears actualized. And I survived.


Living a Dream in Thailand.
In July, we traveled to Thailand, Kuantan, and Myanmar. The trip to Thailand felt like a dream. We rode elephants, played with tigers, saw countless Buddhas and tasted amazing food. Yet the entire time I had to be extremely mindful of dehydration and physical exhaustion. In Myanmar, I had the ability to deliver a speech to a small village about my life mission to be Clearly Alive. We almost canceled that speech due to another scare at the airport. Through process of elimination, my husband and I finally realized that it was the Malaysia Airline's water that kept making me sick. I am not a fan of that airline.


At some point I'll share with y'all this experience.
Very thankful for my husband, my Malaysian Endo, and the A&E that recognized the urgency of my situation.
August marked the end of our six months in Malaysia. Just when I thought I had a handle on Malaysian food, I ate bad chicken. My last weekend in Malaysia was spent with a three day hospital admission. I must admit, this was not exactly how I wanted to end my six month international work assignment. However, it did make me all the more ready to return home and begin the next chapter in my Texas life.


The Olive Thief is happy I am back!
September marked a month of readjustment as my husband and I unpacked and settled back into our American life. Confession: every now and then, he and I still find ourselves walking on the wrong side of the sidewalk due to Malaysia. I also started in my permanent role as a Validation Engineer for integrated circuits. Although I am unbelievably grateful for our six month adventure abroad, I cannot express my gratitude enough to be home in Texas. The husband and I have no plans on leaving any time soon.


Got to see Big Tex for my birthday!
In October, I celebrated my 25th birthday at the Texas State Fair with friends. I had to actively monitor my self talk. State fairs are known for the glorious amount of fried foods. Because I am required to eat gluten free, I cannot enjoy any fried food. But guess what I can enjoy? TURKEY LEG!!!! May I continue to focus on positives and remember that no matter how many times my body tries to kill me, I am Clearly Alive. I also want to give a shout out to my husband. In October, he started at his amazing engineering job. He put his career on pause in 2014 so that we could wed and move to Malaysia. I am unbelievably thankful for his sacrificial love and support. I would not be where I am today without him by my side.


Little did I know that burger on my plate would make me sick just a few hours later.
November marked the two year anniversary of my blog. I am extremely thankful for the continual support from y'all. Thank you for investing in my story. Thank you for your encouraging words. I am not sure where this journey will lead, but I promise that I will always continue to fight to remain Clearly Alive. I also ate an under-cooked burger at a restaurant which lead to food poisoning and another emergency injection. It is a bit unnerving at how good my husband is becoming at stabbing me and saving my life. Turns out he would like me to be Clearly Alive as well! I am happy to report that we took the lessons learned from my August experience and I was only knocked down for 24 hours instead of the three days in a hospital. I am constantly learning how to live with Adrenal Insufficiency and constantly adapting so that the super scary experiences of the past need not repeat themselves.


Want this shirt? Order here.
All proceeds will be donated to either AIU or NADF.
In December, my husband and I relayed the Dallas Marathon with three others. I ran the last leg which consisted of 5.7 miles. During the run, a woman approached me and asked where I had gotten my sweatshirt (I designed them, by the way. Want one?). She was running the full marathon and had been diagnosed with Addison's Disease in 2007. How awesome is that? Even when I thought I was running alone, I found someone who could relate to my journey.

We will always be diseased. There is no cure, and I will be on life-saving steroids until I die. But my disease does not define me, and I am far from isolated. I am so much more than the 251.44 code that I see written on every single one of my doctors' forms.

I am Clearly Alive.

I cried tears of joy as I sprinted across that finish line of the Marathon. I did it. I finished 2014 strong.

Bring it on, 2015.

I'm more than ready for you.

Saturday, December 13, 2014

The Drive to Kuantan

"Hey, do you want to drive to the other coast of Malaysia?"
PS- It really is Kuantan not Kuanta. The sign is broken.
My husband and I rented a car in Malaysia for one month. Before surrendering it, we decided to drive to Kuantan to see the other coast. If you are wondering, Malaysian road maps are crap. Perhaps it was just the English map we used, but the map did not give any useful information. It preferred to brag about the "beautiful" spot rather than show the roads to actually get there. In addition, we could not rely on Google Maps because neither my husband nor I had smart phones with data plans. We were at the mercy of confusing road signs.

AWAS means "Caution."
With other mishaps from this awful road map fresh in our mind, we knew to take the promises of beautiful Malaysian East Coast beaches with a grain of salt. However, I still was determined to see them. Unfortunately, we made a few mistakes on this adventure. Our first mistake was trying to travel during the month of Ramadan. Everything was eerily closed.

At the rest stop half way. No food during fasting hours.
We also left the safety of a major international city. Kuala Lumpur was very tourist friendly. Kuantan was not. While KL harbored people from all over the world, we were clearly the only non-Asian tourists in Kuantan that day.

I found kittens! They liked me.
I would like to point out that this was not the my first experience of traveling internationally as the obvious non-native. However, this was the first time I felt to be in such a hostile and unsafe environment.

A group of Japanese tourists saw that I had cheese and that the cats liked me.
I shared my cheese and they tried to make friends with the kitties as well.
I got such soul piercing judgmental glares from the few locals once we did find a beach. When I was retelling the experience to a native Malay coworker the next week, he just laughed at me. He informed me that Kuantan is located in one of the most religiously conservative states. The locals did not appreciate what they assumed was my blatant lack of modesty. I was dressed modest according to my standards, just not according to their standards. My coworker also pointed out how my naive blunder was made even worse by visiting during their "holiest" month. He explained that during Ramadan, they are supposed to purposefully abstain from all sinful thoughts and desires.

I have no idea what this sign on the beach says.
But I do know from the hateful glares that I was breaking their dress code.
I arrived in what they considered a completely inappropriate outfit. Their women are required to wear long sleeves, pants, and hijabs. I'm in a sleeveless shirt, bright blue shorts, and a baseball cap. My coworker could not stop laughing at me as I realized how I had goofed up. I honestly did not know any better. This was another learned lesson. Be mindful of local customs and cultures. It can help alleviate situational stress.

At least the stray cats were kind to me.
I felt so uncomfortable on that beach that it started to make me physically ill. On the drive back, I had a headache that was rapidly turning into a full blown migraine. By the time I reached the elevators of our hotel, I was shaking and afraid I was going to vomit. I did take extra HC, load up on gatorade, and take a zofran in a desperate attempt to stop a full blown Adrenal Crisis. But I was still knocked out for the day well before 8:00pm.

We saw it. We saw the other coast.
We dipped our feet in the water.
The emotional stress of the day zapped my cortisol. I felt judged and uncomfortable. I did not feel safe. After that experience, I flat out refused to travel to any other area of Malaysia that I was not already familiar with. Malaysia might have some supposedly beautiful landscapes, but I had absolutely no desire to see any of them. The spoons required were not worth it.

I have spoken about emotional stress previously and how I was able to handle it. What changed? Our adventure in Kuantan was much different because I was not prepared for it. It caught me completely off guard. I did not pro-actively increase my dose, and honestly I did not realize how bad I was doing until it was almost past the point of no return. I was at the onset of a crisis.

That's perhaps the trickiest thing about emotional stress. It sneaks up on you.

Saturday, December 6, 2014

Of Buddhas and Naps: Thailand, Part 3

We booked our tour guide for two days of private tours. Day one was reserved for Tigers and Elephants. Day two was for a floating market, a train market, and the Grand Palace. Thankfully, it did not begin with another 4:30 am wake up call.

Husband and I at the floating market.
Although the floating market was fascinating, it was definitely a tourist trap. I absolutely abhor bartering and haggling at markets. Give me an honest price and an honest answer and I will make an honest transaction. Do not shove things in my face. Do not continue to shout at me as I walk away from your booth. My Adrenal Insufficiency does not appreciate sensory overload. Needless to say, I walked away from the market and let my husband purchase our small souvenirs.

At the second market. The market is literally located on top of the train tracks.
Once we left the floating market, we headed towards the train market. This was not geared for tourists, but rather it was the local grocery store. Fresh herbs and vegetables were for sale right beside raw frogs and large shrimp. It was so bizarre to watch the market be torn down and then instantly set back up as soon as the train passed. Pictures do not do the market justice, so I have included a video.

After the train market, we visited the famous Reclining Buddha. The three days of adventuring in the Thailand heat were starting to really take a toll on me. It is worth noting that even my husband was growing exhausted.

At the Reclining Buddha.
If you ever want to know how I am feeling, observe my eyes.
We then headed towards the Royal Palace. We took a brief air conditioned break as we went through a silk museum. With my Adrenal Insufficiency, I must be extremely mindful of the heat. I can quickly get overheated and dehydrated.

In front of another temple after the silk museum.
You can see it in my eyes how I am continuing to fade.
By the early afternoon, I was becoming increasingly nervous. Thailand was incredibly hot and humid. I tried to continue to be pro-active about hydration, food, and extra HC but we still ended up calling off the tour early and heading back to the hotel. I had a headache that was rapidly turning into a migraine.

My eyes tell you I am at the point of collapse.
We needed to head back to the hotel asap.
I was in bed by 4:00pm. I felt beyond awful that I did not have the strength to say goodbye to our wonderful tour guide. I barely had the strength to pop a zofran and some extra HC. My husband ended up going out that night to celebrate his birthday with my coworker. They had a nice steak dinner with a few other friends. I nibbled on half a rice cake in between my naps.

When our tour guide saw how sick I looked, she gave me these smelling herbs from her purse.
It did alleviate some symptoms as I desperately waited for the zofran to kick in.
Ignore the Olive Thief in the background.
Although I was unbelievably disappointed that I could not join my husband for his birthday dinner, I could not dwell on that. I purposefully chose to focus on highlights instead of dwell on my limitations. I rode an elephant! I walked a tiger on a leash! I saw a train market! We ate absolutely amazing food! Could I participate fully in every single activity? No. Did I have to adjust my plans and cancel some activities in order to keep me functioning and out of the hospital? Yes. But that is ok.

Before our flight to Malaysia, at the Airport. I was feeling much better!
You can see it in my eyes.
We left Thailand on an afternoon flight the next day. We made it safely back to Kuala Lumpur without any IV's at the airport or other scary adventures. Throughout the entire trip, I paid attention to the smaller signs that my Adrenal Insufficiency gave me. I had my husband constantly watching out for me. We took proactive steps through hydration, extra steroids, and calling off activities early. I proved to myself and to the world that I was still Clearly Alive with my broken adrenal glands.

Goodbye Thailand!
It was an absolutely amazing trip.

Read Part One.
Read Part Two.