I write about my life with Addison’s Disease yet until January 23rd, 2014 I had never met another person with the same disease. I communicate regularly online through things like this blog or online support groups, but to share a meal with someone who could understand and relate? It was a luxury I had never experienced.
Ironically, it turned out that there were quite a few of us living around Dallas.
“We should meet! IRL!”
The idea started simple. We realized that some of us that lived relatively close to each other. We should meet! Once we picked the date and the location, we extended the invitation through other Adrenal Support groups such as National Adrenal Disease Foundation. I had no idea how many people would show up.
Some of the women were just recently diagnosed. Other women had been living with this disease for over twenty years. Each of us had a different story of diagnosis, a different path that led us to that table. But one thing was apparent. We were all walking miracles.
There were additional horror stories of emergency rooms and hospitals grossly mismanaging our Adrenal Insufficiency. Sometimes this resulted in several days in the ICU. We realized the need to raise awareness in our city and begin campaigning to the local hospitals and EMT’s to provide information so they will stop trying to kill us due to lack of training.
Timing of Meds
We all discussed that we respond better to taking hydrocortisone every more frequently instead of the outdated recommendation of only twice a day. I smiled as I watched many pill bottles discreetly pulled out and medication swallowed so that we continue to feel well despite all of the “good stress.”
There was a great idea shared of getting a locket and putting a few pills of either prednisone or dexamathsone in it and wearing it at all times. If we could not reach our solu-cortef shot, we could reach the medicine around our neck and chew it to get it into our blood stream the fastest. This could prolong our lives until we were able to move again and seek out additional help.
Emergency Injection Kits
We showed off our different emergency injection kits. The pink case is actually insulated so that it is protected against extreme temperature changes.
We highly encouraged others who did not have their emergency injection to petition their doctors for one. In our city, ambulances are emergency transport only. Carrying our own solu-cortef shot and training those closest to us how and when to use it could save our lives.
We talked about how quickly we can “crash” or how we start to fade and suddenly cannot understand anything that is happening around us. We realized the importance of having a group that can help us watch out for low cortisol signs and symptoms, be it significant others or parents. When we start to fade, or crash, so often we do not realize what is happening.
The Beauty of Community
It was an amazing experience. I would like to keep in touch with each of these wonderful ladies. There is something so powerful in realizing that you are not completely alone in your journey, especially with a rare disease. There are others that can relate.
If you had just seen us sitting there at the restaurant, you would have never known that all of us shared the bond of broken Adrenal Glands. That’s one of the challenges of living with an “invisible” disease. Perhaps through continuing to raise awareness on invisible diseases, our lives can have a brighter future.
Ladies, please join with me in the fight to remain always Clearly Alive.