Saturday, May 19, 2018

"WHY are you in Chicago?!"

During my sophomore year of college, a group of us decided to take a road trip from East Texas to Chicago, IL during spring break. 

My friend's trusty mini cooper carried all five of us from Texas to Illinois.
Photo from 2010.
We stayed at my friend’s house in a suburb north of the city. The drive up was uneventful, and we arrived safely.

Just chilling. Photo from 2010.
To give some additional background, the months after I returned from studying abroad in South Korea, I was battling extreme dizziness. Almost every time I stood up, I blacked out. I vividly remember one particular episode where I was working on homework on my dorm room floor (my desk was far to small to spread out all of the papers I required). I stood up and immediately collapsed back to the ground. My body just fell. I was mentally aware the entire time, but I was unable to see anything or move for a couple of seconds. Needless to say, my roommate who witnessed the entire event was concerned. I assured her that this was just my "normal."

Well during this particular trip, my "normal" dizziness was growing even more concerning. At the prompting of my friend (after we had to take a break due to walking around a grocery store), I finally called endo #2 to ask for his advice. His office staff was always amazing. After spending so much time in appointments during my summer and winter school breaks, I knew that I could call them at any time. The front office lady greeted me and I explained my problem to her. She said she would consult my doctor and then call me back.

The next day, my friends and I headed off to Ikea. I was in denial about how poor I was feeling.

The mature way to handle Ikea, yes?
Photo from 2010.
We were in the bedding section when endo #2 returned my called.

“Uh, hi Amber. Your dizziness is particularly concerning to me. You need to go to the ER.” 

I sat down on the nearest Ikea bed and started crying. Our Ikea adventure would be cut short and replaced with another type of adventure. As I informed my my friend, she handled the situation absolutely perfectly. She drove us home, made us a quick lunch, forced the guys to pack up their engineering homework, and then we all headed off to the nice ER.

I walked into that ER waiting room and stated that I had Addison’s Disease. I informed them that my endocrinologist sent me here. There were no questions or doubts and I was rapidly taken to triage where they immediately drew blood and inserted a line for the IV. I was then sent back to the waiting room.

All the cool kids go to the ER over spring break.
Photo from 2010
Shortly after, I was taken back to a room. All in all, they gave me two liters of saline, a sandwich and some orange juice because my blood sugar was low. I was released after a few hours. And my friends were able to successfully complete their homework in that waiting room.

Normally, I do not smile in the ER. But I was appreciative of my friend who was there keeping me company.
Photo from 2010.
However, I think the highlight of that ER trip was seeing the confusion of the nurse as she looked over my information.

“Ok, see, my cell phone number is from Arizona. I used to live there. My doctor is in Washington state, because my family lives there now. My mailing address is in Texas, because that’s where I attend school.” 
“Ok. But WHY are you in Chicago, Illinois?!!!” 
“I’m on Spring Break?”

Living with Addison's Disease does require a constant adjustment of plans and a level of flexibility that most people cannot fathom. However, I remain determined to never allow this disease to steal my joy in living life. That ER run was just a small footnote in an amazing spring break adventure. 

On the top of "Willis Tower" (Sears Tower) with the hospital bracelet still on my wrist.
Photo from 2010.
I am Clearly Alive.

Sunday, May 13, 2018

The Realization of a Dream, Part Three

I must confess that this post has very little to do with living with Adrenal Insufficiency. It isn't even about the realization of one of my dreams. 


This post has to do with someone else being able to realize one of their life long dreams.

Because no doesn't always mean no.
Sometimes it means "Not yet."

The Background

I come from multiple generations of incredibly strong women. My great-grandmother was a refuge who was forced to flee religious persecution and slaughter in "the old country" (Persia). Her child, my grandmother grew up on a farm where English was not the native tongue. As an adult, my grandmother escaped a bad marriage and raised four daughters (including one with special needs) as a single mom during a time where it was not as socially acceptable to be a single mom.

Her child, my mom, was the oldest.

My mom started out her time in college as a music major, but then she switched to a business major with a minor in music. She married my father two years after graduation.

About ten years into my parent's marriage, my mom was researching masters' programs. It had always been a dream of hers to continue her education. However, as a stay-at-home mom with two young kids, she put her dream on hold and supported my father during his journey to obtain his MBA. It was an exciting moment for our entire family, and my mom stood proudly by my father's side, supporting him as he received his fancy piece of paper. 

Photo from 1996.
Fast forward another six or seven years. While we were living in Texas, the opportunity came up for my mom to finally pursue her masters. She took it! It was in a field she was passionate about, and she made it through her first series of classes with straight A's.

But my father came home from work one day and told my mom about a new job opportunity for him. It was absolutely amazing and would further catapult my father's career and greatly increase his earning potential. However, it would require a rather large sacrifice on my mom's part. The new job was in a different state and she would need to drop out of her master's program.

After a great deal of discussion, it was decided that my family would relocate from Texas to Arizona in order to further my father's career. My mom went from planning a class trip to Prague for school credit to planning a cross country move with a ten year old boy and a thirteen year old girl with undiagnosed adrenal insufficiency.

She had always dreamed of earning her Master's Degree.
But she found herself, once again, purposefully walking away from it.

The Realization of a Dream

Let us move the clock forward over a decade later. My parents received word that their alma matter was merging with another university in order to avoid complete closure. That new university extended an extremely generous offer: All alumni were eligible for a discount equating to one third off of their tuition, if they would like to pursue further education at the merged institution. The merged institution also had an extensive online master's degree program.

This was the opportunity for my mom to pursue the dream that she had never truly given up on. Yet it was something that had previously been unobtainable. It was just a fact of life and priorities. She put her husband's MBA ahead of hers to raise my brother and I when we very young. She dropped out of her dream master's program in order to move her family to Arizona. She supported and followed her husband as his career continued to grow requiring additional family moves to other states. Then she supported me and my brother as we pursued our college educations. All the while, her masters credits were left to expire.

And yet...

My mom applied for the program and was accepted. The crazy woman then managed to cram two years worth of classes into sixteen months (she does not recommend that, by the way). She defended her thesis December 2017 and we held a preliminary celebration during our mother / daughter Christmas Cruise.

Photo from December 2017.
A few months later, our immediate family gathered together to watch her walk in May.

Summa Cum Laude!
Photo from May 2018.

Perhaps, instead of the lie "No. You can never do that" we should proclaim, "Not yet."

My amazing family celebrating my mom.
Photo from May 2018.

What is your "Not yet?"

Fun fact: With my mom's fancy piece of paper, this officially makes me the least educated person in my immediate family. My younger brother has his master's degree. My father has his master's degree. My mom? Not only did she earn her master's degree BUT she also took and passed a PhD level course.

As for me? Well, I'm just an engineer.
Perhaps one day, I too, shall have the opportunity to pursue a masters.

Photo from 2014. I was unable to attend because I was living in Malaysia.

Saturday, April 21, 2018

The Nightmare, Five Years Later

I almost died at age twenty-three.

That experience changed me. Most people do not wrestle with their own mortality at such a young age. What did your life look like at age twenty-three? What were your goals? Your ambitions? Your dreams? Your desires? Were they focused on avoiding death?

April 19th, 2013 served as a drastic refocusing of my life.

I know many who can personally relate to that drastic refocusing. They have their own individual "I should be dead" stories. Within our survivor community, we have an inexplicable passion that looks absolutely ridiculous to the outside world.

We have a difficult disease to manage and yet you will find us...

Completing Marathons.

Elesha after the Surf City Half Marathon in Huntington Beach, CA.

Exploring Alaska.

Eva at Tangled Lakes, Alaska.

Earning advanced degrees.

Anne Marie worked full time as a MediVac flight nurse while earning her Dual Masters in Nursing.

Publishing books.

Wendy showing off one of her books from a hospital bed in Hong Kong.

The outside world tells us to slow down. To let up. To back off. To take it easy. But here's the thing...

We cannot.

We understand how precious our life is and we are determined to not waste it.

We love deeply.
We encourage incessantly.
We explore passionately.

We dream of turning our pain, our struggles, our journey into hope for others.

We are Clearly Alive.

May our passion be infectious. May our joy be contagious. May our focus inspire you to not take your life for granted.

Five years ago, I almost died.
Today, I am Clearly Alive.
I challenge y'all to join with me.


No nightmare will ever silence this voice.

Saturday, April 14, 2018

An Ambulance Ride, Five Years Later

One Saturday night in February, I had to come face to face with one of my biggest PTSD triggers. I was taken, by ambulance, to the local emergency room due to an impending adrenal crisis.

One specific thing did not cause that crash towards an adrenal crisis. As always, it was a compounding of all events. It was caused by the meeting with the tax CPA that Thursday afternoon. The Thursday late night vet visit due to a sick Olive Thief. The half day of work that Friday morning complete with non-functional code. The drive to a bigger city in rush hour traffic that Friday evening. The early 15k race that Saturday morning. The Ikea trip that Saturday afternoon. The multiple hour drive back that Saturday evening. The processing through of all the emotional triggers of a jam-packed few days. To top it all off, I had a cold brewing in the background.

My poor Olive Thief caught an upper respiratory infection that spread to his eye.
He required two different types of antibiotics.
Photo from February 2018.
I need to be careful when I'm in the "I kind of don't feel well" zone. I will watch several episodes of Netflix to zone out as an attempt to relax. By the time I move several hours later, I have slipped from the "I kind of don't feel well" into "I really don't feel well, and this is dangerous." That particular Saturday night, I found that I had slipped into the adrenal insufficiency danger zone without even realizing it.

I actually felt really good immediately after my 15k race. I called my parents in celebration and they could hear in my voice that I was stable. I was impressed with myself! I even volunteered Ikea for lunch with my friend because I knew that the food court had gluten free options.

IT EXISTS! And it was delicious.
Photo from February 2018.
On the solo drive home, I started to not feel well. My knee was angry at me for forcing it to run over nine miles without adequate training. I continued to push fluids / electrolytes / highly salty snacks. I made it safely to my apartment and decided to rest with some Netflix. By that point, I had taken in over 3.5L of fluids, over 3,000 mg of sodium, and a rather large quantity of bananas.

After turning off Netflix, my goal was to take my night meds and crawl into bed even though it was barely after 7:00pm. I made it to the hallway before I didn't have the strength to move. I texted a dear friend just as a warning that I was not doing well.

Nothing like a selfie on the floor to show a location.
I am incredibly thankful for the cortisol pump.
I attribute that for how I was able to remain mentally coherent.
Screenshot from February 2018.
I was on that floor for quite a while unbelievably frustrated with my body. In my mind, I just wanted someone to fetch me my medicine and then help me climb into bed so that I could "sleep it off." I decided to text a local close family friend with my strange request.

She immediately called me so that she could hear my voice. For those that know me well, the sound of my voice can instantly inform them how far along I am. After hearing my weak and broken "Hello...?" she stated that her family was on their way. We were going to the ER.

Stubbornly, I did not want to go to the ER. I just wanted to go to sleep.

When her family arrived, she asked me if I needed my emergency injection. She works in the medical field, and is well experienced with delivering shots. In fact, she has already delivered my emergency injection twice before. I declined the injection, due to pumping so much medicine through my cortisol pump. I figured I was covered.

She stated that we were going by ambulance. My angry right knee prevented me from being able to go down the two flights of stairs at my apartment without assistance. She was calling professional help.

Panic set in at the thought of an ambulance, but they assured me that it would not be a repeat of the Nightmare.

I was safe.

I don't remember many details about the paramedics' arrival. I do know that they had a fancy chair that allowed me to be easily transported down the stairs. I was transferred to the stretcher. During that transfer, I started dry heaving. This was a clear sign that my situation was continuing to deteriorate. I did not want my emergency injection before, but I knew I needed it now.

I began frantically requesting that injection, but the paramedics refused. I started screaming that I would not be transported until I received that injection. If they weren't going to give it to me, I would have my friend inject me.

They stated they were trying to follow protocol. I stated that their protocol might help the majority of the people the majority of the time, but it will harm me. We were not leaving until I had that 100 mg of solu-cortef in my system. My friend got out of her vehicle and returned to the ambulance. She delivered the injection as the paramedics stepped aside. The shot temporarily stopped the seizing and the dry heaving. I was stable enough to transport.

During transport, I do remember the paramedic warning me, "Now Amber, I don't take kindly to rudeness." To which I responded, "Well, I don't take kindly to incompetency, so we might be at an impasse."

I pleaded with him to start IV fluids in the ambulance. At first, he resisted. But he reconsidered after reading the cards provided by Adrenal Insufficiency United. He asked me which arm I preferred. I told him to pick his favorite because it was more important the he liked the vein, especially given the fact that he was going to start an IV line while in a moving vehicle. 

Y'all, carry these with you everywhere. They are incredibly helpful.
Buy them here.
They radioed the ER to alert the staff that an Addisonian was on the way. The ER staff actually told the ambulance to turn around and go somewhere else because they were at capacity due to the flu. He told them too bad, we were still coming to them specifically.

By the time I arrived to the ER, I had already received 100 mg of solu-cortef, 1L of saline fluids, and I was still running my cortisol pump at 10 mg / hr. Without all of that, I would have been crashing more rapidly towards an unpleasant ending.

I am incredibly thankful that my friends were adamant about transport by ambulance and that I live in a state where ambulances can and will start IV fluids. The ER nurse was not exaggerating when she stated they were swamped. Even with the ambulance priority, a high level triage, and vomiting upon arrival, I was stuck in a crowded waiting room with a mask for half an hour.

Once a bed opened up, I was quickly wheeled out of the waiting room. The ER doctor and nurse were incredibly compassionate and knowledgeable. I loved what the ER doctor told me: "In all my years, I have only seen one textbook adrenal crisis. These things are never textbook. What do you need? How can I help you?"

I was released several hours later after a total of 3L of saline, 150 mg of solu-cortef, and a dose of zofran. 

It was past everyone's bedtime.
Photo from February 2018.
Although I hate the fact that I required an ambulance, I am thankful for the positive experience. I will replace negative experiences with positive ones in order to continue to heal from my PTSD. 

I am Clearly Alive.

Amber Nicole's Tips and Tricks for the ER / ED

  • INJECT 100 MG SOLU-CORTEF BEFORE YOU GO! Y'all, I cannot stress that enough. I thought I was fine. But without warning, I suddenly crashed worse.
  • Have a strong advocate. They don't need to know everything. They just need to be able to boldly repeat this script: "No triage. Addison's Disease. Addison's Crisis. Solu-cortef. IV fluids. Now. Otherwise - potential for cardiac arrest."
  • Put together a "hospital bag." Mine consists of coloring books and cellphone chargers.
  • Remain Clearly Alive.

Everyone was exhausted after that late night ordeal, including Mr Glitch.
Photo from February 2018.

Saturday, April 7, 2018

A 15k, Five Years Later

In 2013, before the Nightmare, I ran the Hot Chocolate 15k. I was very impressed with my time, and it still stands as one of my more proud personal records.

Under ten minutes a mile for over nine miles.
In 2015, I was supposed to run that 15k Hot Chocolate for a second time. However, due to a poorly timed sinus infection and a "flu like virus," I had to sit it out. But this year, I realized there was an opportunity for me to complete it! I will confess that I did not train nearly enough for those nine miles. This is an incredibly bad habit that I have fallen into.

Before the race. I'm all decked out!
A friend and I drove down to the race the night before and stayed at the recommended hotel. This strategic move allowed us to walk to the starting line the morning of without having to worry about parking, traffic, construction, and a whole host of other unknowns. It reduced the amount of stress and greatly enhanced the overall race experience.

After walking to the starting line, before the race began.
Before the race, I set my cortisol pump on a separate profile that runs a higher elevated basal at a constant rate for the entirety of the race. I took 0.25 mg of dexamethasone, and several salt tabs. I also was prepared with some Huma PLUS - Chia Energy Gel packets.

The "+" indicates more electrolytes.
I appreciated the easily understandable ingredient list and the ratio of sodium to potassium was much higher than other products. I would buy these again.

240 mg of sodium per packet.
With everything loaded into the back of my camelbak, I was ready to head off into my assigned corral. When I arrived, I realized that there was a mistake. I was in the preferred first corral with all of the fast runners! I did not belong there, and I knew it.

This first corral was invitation only and only after submitting a verifiable fast time. I think the Hot Chocolate organizers pulled my verified time from five years ago and automatically placed me in that first corral. I immediately dropped back to the second, slower preferred corral.

The race began! At first, I tried to stay with an official pacer and was able to successfully run with him for around three miles. I slowly fell behind and eventually lost him. I found another official pacer, running at a slightly slower pace! I ran with him for a few miles. But then I lost him. A third (slower) pacer showed up, proudly carrying her sign! However, it did not take long for that pacer to leave me behind as well. This strategy was clearly not working.

I was struggling to keep up with the pacers throughout the course.
Around mile five I overheard a woman say "Ok! Walk break!" This peaked my interest and I ran over to her to ask her what intervals she was running. She said 90:30 - 90 seconds of running with 30 seconds of walking. I humbly asked her if I could join in with her pace group. She was extremely supportive and we began chatting. I found out that I was running with a group that had also traveled for this particular race. In that moment, they told me I was an honorary member of BGR. Black Girls Run gave me the support and encouragement along the course to keep going.

Pam and I had to get a picture together at the end of the race.
As I was jogging with Pam, our dedicated pacer, we continued to chat about how amazing it was that we have the ability to be out on this course, running this race, at this particular moment. I wanted to cry as I thought back over the past five years.

I have survived quite a bit. We have hit the time on a calendar when a lot of anniversaries of unpleasant days are coming back up. I am close to my five year anniversary of the Nightmare. I am  also close to one year of being divorced. My life did not turn out how I originally expected.

But, I can still run.

My face shows the exhausted joy that comes with completing such a monumental task.
I can still sprint across that finish line, giving it my all.

Victory. Complete with tears of joy.
I can still earn that finisher's medal.

After the race, I was feeling rather good!
I can still proudly proclaim that I am Clearly Alive.

Worth it.

If you are interested in any of the products I have mentioned above, they can quickly be found on my Amazon Influencer's Page.

Proceeds generated from these items enable me to keep my Clearly Alive blog up and running while still donating to both NADF and AIU. Thank you for supporting my passion to enable others to remain Clearly Alive.

Saturday, March 17, 2018

To Hell and Back

When visiting Cayman Islands, you can make a trip to Hell. This little section of the Island is named for the landscape that looks like it was formed from violent volcanoes. In reality, the rocks were eaten away by erosion over many years.

A picture of Hell.
Photo from December 2017.
It's not much to see, but my mom wanted to take me there. I'm sure the taxi driver thought we were two dumb American tourists when we insisted on "Going to Hell" after our snorkeling excursion. But he acquiesced, and took us to our requested destination.

Of course there is a cat in Hell.
And of course, I instantly made friends with him.
Photo from December 2017.
Once we were there, we explained to our driver that we were not there for a tourist trap. While my grandmother was still alive, she had watched me "Run Thru Hell" and win.

Photo from July 2012.
Additionally, my mom went on a cruise with my grandmother before her health started to significantly decline. They visited this exact spot, despite my deeply religious grandmother's hesitation.

Just two generations of Assyrian warriors standing at the edge of Hell.
Photo from 2011.
And now, here I was, many years later standing with my mom in the same spot.

Just two generations of Assyrian warriors standing at the edge of Hell.
Photo from December 2017.
I come from multiple generations of incredibly strong women. From my great-grandmother, to my grandmother, to my mom, to me - our blood flows with an indomitable spirit.

Now a trip to Hell does require preparation.
I have my cortisol pump and my CamelBak.
Photo from December 2017.
So take that life! I've been to Hell and back!

I think I shall leave Hell now and move on with my life.
Photo from December 2017.
And through it all, I am Clearly Alive.

Saturday, March 10, 2018

The Realization of a Dream, Part Two

During the summer of 2012, my mom and I took a cruise in the Caribbean and stopped at the Cayman Islands. We had signed up for a stingray / snorkeling adventure, but it was pouring rain! Although many excursions were cancelled due to weather, our tour still continued as planed.

My mom and I soppin' wet in the Cayman Islands.
Photo from May 2012.
I wanted to enjoy this "once in a lifetime experience" of swimming with stingrays, but in all honesty, I was miserably cold and struggling greatly with my Addison's disease. I wanted it to be over.

We are quite skilled at faking feeling well.
Am I feeling ok in this picture? Is the Caribbean sea blue in this picture?
There's your answer.
Photo from May 2012.
After the cold swimming with the stingrays in a crowded place, it was time for snorkeling. The boat took us to a less crowded area to explore the world underwater. I remember jumping out of that boat and diving under. Although it was still raining, the sea was much warmer. There was also a calmness. I thought to myself, "I absolutely love this."

Photo from May 2012.
December of 2017, my mom and I had an opportunity to revisit the Cayman Islands when it was not pouring rain. I remember thinking "Oh, this is how the water is supposed to look. It is actually blue."

Do you see how blue this water is? I was in the same spot as before.
Photo from December 2017.
This time, I had my waterproof cortisol pump. This time, I had the ability to swim without fear of my oral medicine not kicking in soon enough. This time, I was free.

Medtronics, thank you for finally providing a piece of equipment for active pump users.
Photo from December 2017.
I used Grif Grips to secure my pump site to my stomach with Mr Koala Bear and an arm band to hold my pump while I explored.

Without the Grif Grip, the site would have fallen off.
I've had that happen before.
Photo from December 2017.
Once again, I cried as the gravity of the situation sank in. This was another dream that I had given up on. It was something that I had previously viewed as unobtainable. It was just a fact of life. And yet, once again here I was accomplishing it. I was able to SNORKEL knowing that I was still receiving my medicine.

In this picture, you can see my medical alert bracelet, my cortisol pump, my HR monitoring watch, my pump site protected by Mr Koala Bear.
Photo from December 2017. 
And I had my mom by my side, witnessing it all.

We make up an amazing team.
Photo from December 2017.
I am Amber Nicole.
And I am Clearly Alive.