Clearly Alive: 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.

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.

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.

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 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."

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.

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.