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.

Saturday, March 3, 2018

A Modification of Plans

The Background

I am a salt waster. From a very early age, I struggled with remaining hydrated. I would end up in emergency rooms frequently due to severe dehydration. We have been able to reduce the number of IV fluid "fill up's" over the years through fludrocortisone and salt tabs, but they will never be fully eliminated. That is the reality of my body.

One of many examples of me receiving IV fluids.
Photo from the early 90's.
Recently, these episodes have been increasing in frequency. I was in the ER for dehydration in August, October, November, December, January, and most recently TWICE in February. These trips last four to six hours and I'm normally released after a few bags of IV fluids and some solu-cortef.

A Modification of Plans

For Christmas this year, the plan was for me to fly into DFW on Friday, December 22nd to celebrate Christmas that day with my family. My mom and I would drive to Houston on Saturday and spend the night with some dear friends from college. On Sunday, she and I would drive to Galveston and we would set sail on our cruise to the Caribbean.

TSA + Christmas gifts in checked luggage.
Always a fun combination.
Photo from December 2017.
On December 22nd, I flew into DFW without issue. It did take me a while to get through security (They really are now hand checking every bag with food in it), but the kind TSO fetched me water as I was waiting. By Friday night, I was absolutely exhausted but I thought I was doing ok overall. I figured I could rest a bit Saturday morning, and at some point we would make the four hour drive to Houston.

Us just being our goofy selfs.
Photo from December 2017.
We never made it to Houston.

On Saturday, I could not get moving. I had a horrible headache. Increasing my cortisol was doing nothing and I was scared. I attempted to go downstairs, but could only manage to crawl out of the bedroom to the upstairs landing. Thankfully, I had my phone on me. I sent my dad a quick text stating "Feeling worse." He discretely notified my mom. I sent a follow up text of "I see you." He was able to look up and see me on the landing.

My aunt and uncle's sweet dogs are modeling the landing.
I was lying down where the black dog is located.
Photo from January 2018.
My mom rushed upstairs and started running through our checklist. My pump site was brand new. I had already increased my pump rates and had taken additional oral medicine. I had tried to increase my fluids and had taken additional salt tabs. Yet, my situation was not improving.

She mentioned the ER.

I denied it. I did not want to go. I wanted to be driving to Houston to see my friends and their beautiful baby girl! But, I was also terrified to move. She asked me to check my resting heart on my Garmin watch. From our ER trip in August, we learned that an abnormally high resting heart rate could indicate dehydration. I started crying when I saw the number. That, along with the nausea, the migraine, the inability to move, the extreme fatigue, and the dizziness were all indicating the same thing: I was dehydrated and I needed IV fluids. We grabbed the essentials and headed to the same ER that saw me in 2013.

Once at the ER, I got in a wheelchair to facilitate transport. Apparently, convulsions with a rapid heart rate while being pushed around in a wheelchair once arriving at the ER looks like riding a bicycle to the activity tracker. My Garmin decided to log the convulsions as a "Move IQ Event."

This made me laugh, after the fact.
The ER staff was amazing. They quickly connected me to IV fluids and administered solu-cortef. We discussed the events leading up to the episode and concluded that it was triggered by lack of sleep, a long day of traveling, excitement about the Christmas holiday and cruise, and a massage. The ER doctor was relieved to find no signs of infection and was thankful we knew to come in.

You can just barely tell in this picture, but I was rocking cat Christmas PJ's in the emergency room, underneath the stylish hospital gown.
Photo from December 2017.
I was released several hours later. The drive to Houston was out of the question. I cried hard about that. For MONTHS I had been looking forward to spending time with these friends. And yet when the time finally came, my body gave a hard "NO." To state that I was disappointed would be putting it lightly.

However, my mom and I purposefully planned the itinerary with flex time built in. Instead of driving four hours the first day and one hour the second day, we would drive all five hours in a single day. Although we had to completely eliminate the trip to Houston, we would still be able to make it to Galveston the next day. 

With this disease, I can be pro-active. I can plan. I can consider all factors. And yet, it can still flare. So we react. We seek emergency medical intervention. We acknowledge the disappointment, because that disappointment is very valid.

But it is not wise to dwell in that disappointment.

I have been blessed with an amazing family and some truly amazing friends. Although my friends were sad that I was unable to visit them, they understood that my body sometimes does not cooperate. This wasn't the first time that I had to cancel a trip to see them. I was supposed to attend their wedding several years ago, and my body forbid me from going to that as well.

But you know what? We're still friends. They don't guilt. They don't judge. They share in the disappointment, but they understand that this unpredictability is part of my disease. For that, I am thankful.

Plus, this little "IV fluids fill up" did not harm the Christmas cruise. My mom and I had an absolutely amazing time.

My mom and I on our cruise.
Photo from December 2017.

Saturday, January 20, 2018

ICYMI: A Story about Cortisol

April of 2016 I recorded a video talking about my journey with Adrenal Insufficiency. I have decided to re-release it to YouTube.

A Quick Backstory

I was diagnosed with Adrenal Insufficiency in 2005 and immediately started on Cortef. This caused me to gain thirty pounds and put me at a healthy weight. In 2007, insurance forced me onto the generic Qualitest. My medicine no longer appeared to be working, so my endocrinologist just increased my overall dose. This caused me to gain another thirty pounds. In 2008, I moved to a new state and saw a new endocrinologist.

Undiagosed. First diagnosed. Well managed on Cortef. More weight gain on Qualitest.
I was also determined to try a new plan. We first tried a single dose of 5mg of prednisone given in the morning. That did not work well.

My body did not respond well to a once daily dose of prednisone.
My endocrinologist then suggested a single dose of 0.5 mg of dexamethasone before bed. While I loved how dexamethasone gave me functioning mornings, I was blacking out every afternoon. This was especially terrifying when I was attempting to weld in some of my engineering courses and I barely had the strength to stand.

During that Christmas break, I informed my endocrinologist that I could not survive on just dexamethasone. He threatened to put me back on just hydrocortisone. I adamantly refused, requesting that we combine the dexamethasone and the hydrocortisone so that I could have the best of both worlds. He told me no.

"Well, Why Not?"

I sat in that doctor's office with my mom and argued with my endocrinologist. "It's just not done like that" was not a valid reason to me. Logically, it made sense to mix the different types of steroids. I am very thankful he listened to my reasoning and was willing to try something that was not in the textbooks.

It started out in 2009 with just a single dose of dex at night and a single dose of HC during the day.

When I first started on this treatment regiment in 2009, I was only taking a "bump dose" of HC in the afternoon. By 2012, I was taking HC three times a day and dex nightly. This greatly improved my quality of life and helped enable me to earn my engineering degree.

More Than the Milligrams!

Please run away from any doctor that focuses just on the totally amount of cortisol you are taking. It is much more complicated than that. The timing of your medicine plays a crucial role in your overall quality of life. Treatment for adrenal insufficiency involves a consideration of both the dose and the distribution of medicine.

It is possible to be both over and under medicated at the same time.
It is possible for you to be both over medicated and under medicated at the same time. With too much medicine, I experience the moon face, inexplicable anger, an inappropriately large appetite, and insomnia. With too little medicine, I battle against irrational despair, a different type of insomnia, incredible dizziness, and lethargy. When I was on just dexamethasone or just prednisone, I would cycle through these symptoms in the same day.

This was unpleasant.
It is also worth noting that if you have Adrenal Insufficiency, you should never be waking up vomiting, sweating, shaking, or with very low blood glucose. This is a sign that you are starving your body of cortisol overnight and is incredibly dangerous.

The goal is to have cortisol levels peak around 8:30am, and then gradually dip down to the lowest point around midnight. You can more closely match this with mixing different types of steroids taken throughout the day, but it used to be very hard to visualize what you were actually doing. Until...

The Fruit of a Hack-a-Thon

In 2015, I locked three of my engineering friends in a room with a few laptops and a whiteboard for several hours. At the end of the night, we had produced my Theoretical Steroid Curve Plotter. I had been planning it for over two years and already had another engineering friend do a proof of concept in MATLAB. It felt so nice to turn that tool live.

I am forever grateful to M. Galland, J. Pawula, W. Toth, and A. Vera (not pictured).

My tool plots the theoretical cortisol curve based off of mathematical formulas for each steroid. It is assumed that the value in the bloodstream increases in a linear fashion until the medicine "kicks in." The value will then exponentially decay according to the half life. All values are given in terms of equivalent hydrocortisone.

It is also worth noting that these are theoretical values. Each individual absorbs and clears medicine at different rates. Medicine absorption is also affected by many different factors, such as time of day or the amount of food in the stomach.

The purpose of this tool is to start conversations that could perhaps improve your quality of life. We don't have to live miserably with Adrenal Insufficiency. We can be Clearly Alive.

Benefits of the Cortisol Pump

In 2014, I gained access to a cortisol pump. This allowed me to more closely mimic the circadian rhythm by providing me with 24/7 cortisol coverage at various levels throughout the day.

Constant cortisol coverage made a huge difference in my life.
Several medical issues that I was struggling with resolved themselves after I had my cortisol levels more closely match that of the circadian rhythm. I was told these issues had nothing to do with my Adrenal Insufficiency, and yet they fixed themselves once my cortisol coverage improved.

I do not believe that the medical field will ever fully understand how much cortisol influences every aspect of our lives.

But I do know that I am going to continue to research, continue to learn, and continue to adjust my treatment so that I can continue to remain Clearly Alive. I challenge y'all to do the same.

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Saturday, January 6, 2018

Good-bye, Buddy

Christmas of 2003 my parents gifted me a cat. I was struggling after moving to a new state and my anxiety and depression seemed uncontrollable. My parents knew the therapeutic benefit of fur-babies, as our previous family cat had passed away only a year prior. We went to Pet-smart to adopt and I fell in love with a tiny calico. I named her Missy.

Tiny kitten! My hand is busted up because I got dizzy and fell.
Photo from 2003, before diagnosis.
My parents had an additional surprise. They already determined that if I picked out a kitten, they would adopt a second one to keep the first company. My mom fell in love with another kitten from the same litter as my calico. She named him Buddy.

Buddy. Photo from 2003.
Although the two were inseparable, it became obvious that Buddy was the sweeter cat. While Missy was an excellent hunter of insects, Buddy cared more about the comforting of humans. He would greet every visitor and could always tell when someone was having a bad day.

Siblings. Photo from 2003.
He quickly became the preferred cat to our visitors due to his calming effect. He was always ready to play, and he was not afraid to have a conversation with you.

Photo from 2003.
In fact, he had a nightly ritual with my mom. He would follow my mom around the house incessantly yelling at her. He would not stop his verbal harassment until she sat down. Once she acquiesced, he would instantaneously jump up onto her lap, curl up, and fall asleep. This allowed both of them to relax and unwind from the day.

This was their routine for many years. Photo from 2014.
In 2012, at the age of nine, Buddy came to live with me and my Olive Thief while the diva calico remained with my parents. The two boys bonded quickly and it filled my heart with joy to see them together.

The sweet boys. Photo from 2013.
Before I moved to Malaysia in 2014, I returned Buddy to his sister Missy.

Siblings in a box. Photo from 2008.
Recently, my parents noticed Buddy slowing down. Something was wrong.

Photo from July 2017, when I visited my parents.
Then the growth on his head appeared.

Photo from July 2017, before the growth was obvious.
The verdict of the biopsy was not good. Buddy had an extremely slow growing cancer that finally broke through his sinus cavities. Although the lump appeared overnight, it was most likely growing for over five years. There was nothing to do except make him comfortable while simultaneously preparing to say goodbye.

Photo from 2013.
The final goodbye came on January 2nd, 2018.

Photo from 2008.
Buddy, thank you for your fourteen years of companionship. I will miss our conversations in which you loudly yell at me because there are not enough ice cubes in your water bowl. I will also miss your incessant need to cuddle and purr loudly, reminding me that everything is going to work out fine. Glitch seems to have inherited that trait of yours. For that, I am incredibly thankful.

Photo from 2008.
Good-bye, Buddy.
You were an amazing cat.

These next few photos from 2008 made me smile. My hope is that they will also put a smile on your face, dear readers. They capture Buddy quite well.

Just relaxing.

Come at me again! I'm ready!
Bonus: Two Arizona kitties enjoying the heat of the fire during a Seattle summer.

Sunday, December 31, 2017

2017, A Recap

Below is my traditional month by month recap for 2017.


A small glimpse of the remodel.
From the moment I moved into what was supposed to be "our" house, the Narcissist made it extremely clear that I was an inconvenience to him, disrupting his life. He told me I needed to move out on January 26th, 2017, the same day that I officially turned over the keys to the apartment.


After the "Reno Run 4 Love."
February was devoted to volunteering with the local FRC team. I welcomed it as a distraction, as things at home were not going well. The Narcissist and I also ran a four mile race together. I was hoping it would be a fresh start, but he had drastically different plans.


Just chilling with my Olive Thief in my own apartment.
It is safer to live alone than to live with someone who does not want you.
The Narcissist continued to make it very clear that he wanted out of our marriage. Shortly after our third wedding anniversary, I realized I needed to give him what he wanted because my life was on the line. His abuse crossed undeniably into the physical realm when he went to inject my Solu-Cortef straight into a bone on March 10th, 2017.

I had to escape and escape fast. I moved into a casino for a few days as I started the proceedings for a divorce. Eventually, I was able to pick up keys to my own apartment with the incredible support of my family and a few friends.


I am Clearly Alive.
April was dedicated to surviving the minefield of divorcing a Narcissistic abuser. Dear readers, I hope you never have to experience that. It is beyond terrifying. But I am Clearly Alive.


I love my family. I could not have escaped without their support.
On May 11th, 2017, the judge signed the divorce decree making it legal and binding. Later in the month, I visited Texas for a work conference. This allowed me to meet up with my family afterwards.


When fleeing an abusive narcissist, I had to abandon a great deal of personal property.
I moved back to Texas in a single Relo-cube and a loaded up Toyota Matrix. 
I left Nevada in June. My employer understood my situation and fully supported my move to safety. My parents helped me finish packing up what limited items I was able to recover after the divorce. Before I left, I was able to visit Tahoe one last time to say good-bye. It thanked me by snowing. In. June.


Disneyland!!!! Where I am celebrating my Freedom.
To start out July, I attended Kaboom Town by myself. I am Amber Nicole. And I am back. I also sought professional counseling to help process the trauma from the past few years. Towards the end of the month, I made a trip to California to visit my parents, explore Six Flags Magic Mountain, see Disneyland, and ride bicycles along the beach.


Clearly Alive and FREE!
I was finally able to swim in the ocean with my cortisol pump.
In August, I met up with my mom in Florida. I was able to experience a life long dream of mine, however the severe sunburn did require a trip to the emergency room for IV fluids. The ER staff was amazing and they validated my decision to escape my covertly physically abusive marriage.


Hanging out with former coworkers at Oktoberfest.
These guys were around during the Nightmare Crisis of 2013.
So many things have changed since then.
September was filled with multiple job interviews in multiple states. While traveling to one of those interviews, I had a less than pleasant encounter with the TSA. The end result was a HUGE win for advocacy efforts, with 47,000 people receiving information on Adrenal Insufficiency. I was also able to attend Oktoberfest with former co-workers. At the end of the month, I accepted an incredible job offer that relocated me to a new state.


My mom and I carving pumpkins.
October marked my first month at my new job. I have a wonderful manager, supportive team, and a role where I am able to shine. I did have to visit a local ER for IV fluids, which was supposed to set me up with a local endocrinologist. However, that doctor was uncomfortable treating me due to my cortisol pump. My parents visited me for my birthday, and it filled their hearts with so much joy to see me thriving in my new location. I also was given the birthday gift of OVER 250,000 blog views! To my Clearly Alive community, thank you.


On a three mile run / hike.
In November, I completed two 5k's, winning awards in both of them. I also started an oil painting class. One of the ladies from that class graciously invited me to spend Thanksgiving with her wonderful family. I added to my own little family with the adoption of Henry Glitch, but I did end up back in the ER for more IV fluids. November also marked the 5th anniversary of this blog.


Cortisol pump strapped to my arm. Blue skies in the background.
Ready for adventure.
On my last day in the office for 2017, I was giving a coworker the spark note version of this past year. He confessed he had no idea how I survived so much. He looked at me straight in the eyes and passionately stated "2017 has set you up for an absolutely amazing 2018."

I wanted to cry as I allowed his words to sink in. There were several times this past year that I honestly did not believe I would make it. But I did. I celebrated Christmas with my family before my mom and I headed out on our seven day cruise in the Caribbean. Although, I did have to make another pit stop in another ER for IV fluids the day before I got on the boat.

As for 2018? Heart says it best: "ONWARD to GOOD THINGS!"

My motto for 2018.

Here are my recaps for 201620152014, and 2013.