Saturday, February 20, 2016

One Year Anniversary Cruise- Part Three

This is a continuation of previous posts. You can find part one here and part two here.

At Progresso, our agenda involved touring Mayan ruins, lunch, and an afternoon show. This translated into lots of walking in the Mexican heat. Given my shaky morning, I had to rest many times at the beginning and could not keep up with the larger group. But I was not allowed to slow down.

Standing in front of a Mayan ruin.
I welcomed that lunch break and was thankful the afternoon section involved watching a show in the shade before returning to the ship. Once again, I did not have the strength to attend dinner that night. I was exhausted and used the evening to rest in silence. Once again, my husband left me alone in the room as to not ruin his vacation.

The next morning, I realized that I had a bad sunburn. You would think by now I would have learned the painful lesson that sunburns and adrenal insufficiency do not mix and I need to be more mindful with reapplying sunscreen. You would be wrong. For some reason, I feel the need to teach myself this painful lesson frequently.

I spent the last day at sea mostly indoors, nursing my sunburn. I stopped by the medical bay in order to purchase aloe vera lotion. Did you know that cruise ships are able to administer IV fluids at sea? If at any moment I was unable to keep ahead of my adrenal insufficiency, the sick bay would have been able to treat me. I was incredibly encouraged by this revelation.

The next day, we disembarked and spent a couple of hours in Galveston before driving to Houston to fellowship with a few friends from college.

Spontaneous Miranda Lambert Concert.
Bonus points to the lady in the second row who photo bombed the picture.
Gluten free delicious crepes before starting the drive back to Dallas.
There were scary moments on the cruise but I was able to prevent my adrenal insufficiency from spiraling into a full blown Adrenal Crisis. Most of the intervention came in the form of additional steroids, more fluids, and ample rest. Although that meant that I did not participate in every activity that I wanted to, it also meant that I did not end up in an international hospital.

Saturday, February 13, 2016

One Year Anniversary Cruise- Part Two

This is a continuation of a previous post. You can find part one here.

Sometimes, my body forces me to rest and reset. That first night on the cruise, I slept over fifteen hours. All activities were put on hold. But with that rest, I woke up the next morning feeling better.

View from the ship. New day. New adventures.
Thankfully, there wasn't much planned for the first day on the boat. It was a day at sea, which meant I could relax and lounge. This was my first cruise while eating gluten free. I was nervous, but I must give a shout out to Carnival. They made it very easy.

That night was fancy dress up dinner, which also happened to fall on the wedding anniversary. I was able to wear the dress that I wore to my prom senior year of high school. It made me chuckle to think that when I first bought that dress I considered myself large because of the steroid weight gain. But that weight gain made me healthy. Our perceptions about our body can be so skewed from reality.

Goofing off before dinner.
For dinner, I unhooked my cortisol pump and covered my steroid needs with oral Cortef. Sometimes, I don't want an external adrenal gland complete with 32" of plastic tubing connected to my body. During those times, I will swap back to oral steroid pills.

We be lookin' mighty fine!
At dinner, I reflected on the crazy adventures during the first year of marriage. I laughed at how ridiculous our lives were. I had hoped to continue living a life full of adventure, unsure of the future but confident that we would travel together. He had other plans.

Waiting to board for our excursion.
The next day we docked at Cozumel. The shore excursion included a glass bottom canoe and snorkeling. I unhooked my cortisol pump and covered my medicine needs with oral steroids because my particular pump is not waterproof (Dear Medtronics, please fix this. Sincerely, an active pump user).

The excursion advertised "kayak" but this was most definitely a canoe.
This was not my first time snorkeling. While I passionately hate swimming in a pool, I absolutely love snorkeling. There is a freedom with swimming in open water next to coral and colorful fish. I love it.

My husband and I in the water.
After the snorkeling adventure, I finished the day on the beach with a very good margarita. I was proud of myself. I considered this day a success. I believed that I had dosed my hydrocortisone correctly for my activity level.

On the shore with our snorkeling gear.
I was wrong.

My body let me know that I under-dosed myself around 1:00 AM. I started suffering from that dreaded low cortisol migraine that was so painful it woke me up from my sleep. My stomach was messed up. I was nervous I was going to vomit. At this point, I realized I was getting into a danger zone with my adrenal insufficiency. I finally worked up the courage to wake my husband up to inform him of my situation.

I was so frustrated in those early morning hours. I did everything right, but I still under-dosed myself for the amount of activity the previous day. In that moment I realized I had two options:
  1. I could moan and complain while allowing myself to get worse or ...
  2. I could stop the slip towards crisis and take action.
I picked option two. I took a Zofran, more oral Cortef, turned up my cortisol pump rates, and told my husband to have the emergency injection ready, just in case.

Once my body absorbed the extra cortisol, I fell back asleep. There is a common misconception that high amounts of steroids in your system will inhibit sleep. This is only true if your body does not need the high amount. However, if your body needs that higher dose, the steroids actually help you sleep better. I have proven this time and time again through personal experience.

The next morning, I woke up feeling ok. We were set to dock at Progresso and explore Mayan ruins. I wasn't sure how my body would react, but I knew I would need to continue to be pro-active with HC dose and fluid intake.

What adventures would this day bring?

Story continued here.

Saturday, February 6, 2016

One Year Anniversary Cruise- Part One

My first wedding anniversary was on March 1st, 2015 and I celebrated with a five day cruise to Mexico. The day before I was set to leave on the cruise, Dallas had an ice storm. I do not handle ice storms well. I ended up having a panic attack at work and my younger brother drove me home. I flat out refuse to drive when Dallas has winter weather conditions due to just the sheer chaos of the roads. On the image below, every single red box represents an accident that occurred on that Friday before noon. No. Thank. You.

Screen capture of the traffic that day.
When DFW gets ice, the city basically shuts down due to all the wrecks.
My brother has much more experience driving in winter conditions and was able to ensure my safe transport back to my apartment where I could begin the dreaded task of packing. It doesn't really matter what time I start packing for a trip, I always end up finishing around the same time - well after midnight.

Helpful cat helps with packing.
The next morning, I met some friends for breakfast before starting the five hour drive to the cruise terminal. The roads were still extremely icy, but at least they were empty.

First siting of our boat! The Carnival Magic.
I made it safely to the cruise terminal port, but arrived behind schedule. I was herded into long lines where I struggled to remain standing. I went to sit down away from the crowds while my husband remained in the line. Eventually, we made it past all the checkpoints and were able to board the ship.

The crew attempted to direct me towards participation in the mandatory safety drill already in progress before I could go to the room. I told them I was not feeling well and I did not believe I could participate. I tried to explain that the safest thing for me with my medical condition would be to lay down in my room and rest. Plus, I had participated in these drills before. They informed me that not participating was not an option and I was required to go to the safety drill. I smiled and acknowledged their words, but the moment they weren't looking, I snuck into the room anyway.

It was only 3:30pm, and I was done for the day.

I skipped dinner that night. I slept through it. My husband left me alone. I should have recognized the signs that I was getting into that danger low cortisol zone sooner. Ice on the roads should not have triggered a panic attack at work. A five hour car ride should not have made it impossible for me to stand up. These were inappropriate responses and small warning signs that I needed more cortisol.

I was very discouraged that first night of our vacation. In my mind I believed that this chronically ill wife was ruining everything. Would this be how our entire trip would play out?

Photo from the boat representing a new morning and a fresh start.
Part Two can be found here.