I consider my family to be nomadic. We have lived all over the United States, and I have lived in Asia on two separate occasions. For a while, my father even worked in Canada. Every place we reside, we discover our own favorite local activities. For California, my parents discovered riding their bicycles along the beach. They wanted to show me their route along Venice Beach.
The Early Morning Alarm
While I love the cortisol pump, it is far from perfect. Occasionally it will alarm to notify me of a malfunction. Although the number of alarms is drastically reduced with proper site changes, it is not eliminated.
Even though I am on the cortisol pump, I keep oral Cortef at my bedside with a bottle of water. If my site goes bad, there is no way to know the amount of cortisol that I have absorbed. This is especially dangerous at night. During those very infrequent times, I immediately swallow Cortef and wait for it to kick in. I do not want to be troubleshooting my cortisol pump on a low cortisol brain. That is a recipe for disaster.
At the first alarm, my first instinct was to silence it and pretend it was a dream. Thankfully, the pump is smart enough to alarm again if the problem has not been resolved. As you can see from my alarm history, it actually took three times before my 4AM brain went, “Hmmmm. I should probably fix this.”
Thankfully, this alarm did not require a full site change. I swapped out the tubing and the reservoir. We have a phrase within our cortisol pumper community: “When in doubt, change it out.” We memorize this phrase and repeat it back to each other. If something seems off or wrong, we need to immediately check our pump site.
With the pump no longer alarming and medicine delivery resumed, I was able to sleep for a few more hours. I am thankful that my early morning adventure did not prevent me from the actual adventure planed for the day.
From Venice to Santa Monica
Venice Beach and Santa Monica pier are located about two miles apart. My parents decided to park at Venice and ride our bicycles up to Santa Monica.
In the past, I have had several pump infusion sites fall off due to sweat while I was participating in physical activities. This was before I discovered GrifGrips. It is an adhesive patch that glues my infusion site securely onto my skin. I can be active without a fear of sweating off my pump site! For my entire bicycling adventure along the beach, I had Mr Gator firmly protecting my pump site, with my pump in a case attached to my arm. I could ride a bicycle without hindrance! We were ready for adventure!
We decided to walk our bikes through the street vendors of Venice. Around lunch time, we began to hunt for a spot that could provide me with gluten free food. I walked up to the host of one restaurant and asked about their gluten free selection. I was met with a long pause and eventually, “…. Uh… We have salads?” My parents and I decided to move on.
I asked the hostess at the next restaurant if they could accommodate gluten free. The hostess chuckled and said, “Of course. We can make anything on the menu gluten free.” I was skeptical, but decided to try it. We quickly snagged a table at Venice Ale House.
It turned out that the hostess was accurate in her assessment of their menu, much to my delight. There were ample gluten free options. In addition, they only served one type of macaroni and cheese: gluten free. They refused to serve their gluten free patrons sub-par food. Instead, they created a gluten free mac and cheese so delicious all patrons would enjoy.
I am always appreciative of this philosophy. My medical conditions should not make me a second class citizen where I am charged a premium for less appetizing food. Sadly, that mindset is far too common.
After our delicious lunch, we continued our bicycle tour. We rode past the Original Muscle Beach and continued on, locking our bikes to explore Pacific Park and the Santa Monica Pier.
Throughout the bike ride, I would swallow salt tabs at regular intervals. I also added in some oral Cortef. Although I am on the cortisol pump, I still take oral steroids when I require a bit of a bump dose during days of extra activities.
All in all, we biked around four miles during the heat of the day. My parents considered sitting at the beach, but when I verbalized how fatigued I was, they changed their plans and we headed home. By speaking up and saying “I had a really good day. But I am ready to go home now and rest” I set myself up for future good days.
I am Clearly Alive.