Introducing a Fellow WarriorAn unexpected blessing of living with a chronic disease is becoming part of an amazing community of warriors. I have highlighted several warriors in the past, but today I would like to focus on another.I first met Michelle through online interactions. We were both bloggers with cortisol pumps. Eventually, we realized that we were relatively close to each other in both age and geographic location. We met up for the first time over some amazing gluten free pizza during the summer of 2017.When a work trip put me back close to her side of town, we met up again for Taco Tuesday and more story swapping.
“It would have worked… but…“One of the most frustrating things about primary adrenal insufficiency is the sheer unpredictability of it. We plan. We consider all elements. And then our bodies laugh at us. During dinner, Michelle shared more with me about her most recent surgery to remove her pheos.She had met with the anesthesiologist beforehand. They had come up with an agreeable steroid dosing schedule for before, during, and after surgery. And she believed that the plan would have worked… but… a four hour surgery unexpectedly turned into an eight hour surgery, with complications.Their treatment plan was designed for no complications.Michelle started crashing towards a full blown adrenal crisis, complete with plummeting blood sugars, unstable vitals, and lack of strength to self advocate. She knew she needed more cortisol, and yet the hospital outright ignored her desperate, feeble pleas.Eventually, they gave her another dose of cortisol, which stabilized her.
“I have to go back.”Soon, Michelle will have to face the exact same hospital for another surgery. I know several of us within our community who struggle with PTSD due to medical trauma, myself included. It took many years before I could rewrite my narrative with ambulances after they mistreated me in 2013. I empathize greatly with Michelle as she goes back to that same hospital.We spent a bit of time discussing her new game plan. Yes, she had a plan before. But it was also just a single plan that did not allow for any deviations. This time, she’ll be better prepared. She will actually have three plans.
Plan APlan A is the ideal case plan. This is the original plan that should work, as long as there are no complications. She and her medical team will agree on it beforehand and it represents the best case scenario. She fully trusts that the hospital can effectively administer Plan A.
Plan BPlan B is the “uh oh, something is not going according to plan” plan. The hospital realizes that there is a problem (four hour surgery turns into an eight hour surgery) and steps it up to a higher level of care (corticosteroid dosages are delivered more frequently). She hopes that the hospital does not have to utilize this plan, but she is confident that they will if they deem it necessary.
Plan C for ContingencySadly, with our disease, medical personnel often fail to realize the urgency of our required medicine. We know the urgency, and we know about their inexperience with it. Many of us are very familiar with the feeling of our bodies shutting down. They delay treatment thinking we’ve already had “enough steroids” or “a lot of steroids.” The contingency plan exists for when medical personnel ignore us. It is us taking our lives into our own hands.For Michelle, this means that if something goes wrong, what steps will her mom take in order to ensure that Michelle gets her cortisol?
The Necessity of Plan ContingencyI wish that Plan Contingency wasn’t required for us. But the harsh reality is we cannot fully expect medical personnel to treat us with the urgency that our disease requires. This leaves us with two options:
- Prepare to die at the hands of the uniformed.
- Prepare to live by training those in our immediate sphere of influence.