Now that I have your attention... But that is a reality for me and many others just like me!
Please know that this is not meant to scare anyone, but to stress the importance of proper care, management and community for those with CAH/AI or those who care for someone with CAH/AI.
This blog post will be different from any one I have written. I have not been so blunt and upfront about the extreme negative affect that could manifest itself from having Congenital Adrenal Hyperplasia/Adrenal Insufficiency. This post will hit on that, but for a good reason. Living life is the answer.
Recently in the past couple of months I have been reminded of what it means to have CAH/AI. The first time was by an AI Warrior Momma, Rebecca Lemley (Founder of Camp Cortisol), and the second time was by my fellow AI Marathoner (Boston Marathon Qualifier) friend, Kelli Lash. Each one expressed the fragility and life-threatening aspect of having CAH/AI. These two women are part of a large community that is out there advocating and helping to make advances possible for those of us with CAH/AI!
I have hinted around the situation, but never really hit it head-on. When I am running and someone asks about CAH and what can happen, I jokingly say something about it being bad. Who wants to hear that I could die if I don't take my medicine or if I go into a crisis while out on the run or triathlon courses? But, the fact is, my health is fragile. I could die if I don't have everything under control.
In my daily life I take medicine morning, noon and evening. This is what my doctor and I have deemed to be what works. That is easy. Should something happen that may cause my body to demand more cortisol, such as a broken bone (Yeah, I have some experience with that), illness or sometimes even the daily stress of life (dehydration, emotional stressors) I may add some extra Hydrocortisone. Whatever a non-CAH/AI person deals with without thinking about because their body naturally reacts, my body does not. I may not even know what's happening. It means life is fragile and I need to be aware!
When I ran the Tobacco Road Marathon, I had to carefully learn when and how much Hydrocortisone I needed to updose. To updose simply means to take more medication on top of my regular morning dose. As I have mentioned in previous posts, it has been a learning process about updosing. For short races below 10K (6.2 miles) I don't updose. Anything beyond that I do. It was well after the Flying Pirate Half-Marathon in 2015 when Merrill kind of put it together that I needed updose before and during long races. She said my mood was weird and I was "combative!"
During training for Marine Corps Marathon in the same year, I had one instance of a minor adrenal crisis. I was out on a run and started feeling wrong. I really think that is the "technical" way that people with CAH/AI describe the beginning of a crisis. There is no better way to describe it than feeling wrong. I wasn't at the point where I needed my Solu-Cortef injection that gets a high dose of Hydrocortisone immediately into my body. I simply needed to take some extra tablets.
Following Marine Corps Marathon is when I faced 'death'! Not in the realistic sense, but if things hadn't gotten under control I may have had some major problems. The marathon went well. Afterwards, I did not continue my doses of Hydrocortisone (my doctor and I didn't event think of that) and my body started rebelling. I was feeling badly, had to sit down and generally scared Merrill. After taking a high dose of Hydrocortisone and a nap, I felt better. That was short-lived. The next morning was the worst. On the drive home from Washington, D.C., I could not keep anything down and when that happens the body starts going into crisis. Hind-sight is ALWAYS 20-20. Yes, we should have used the Solu-Cortef injection. Merrill had placed an ultimatum that if I dry-heaved and couldn't keep something down she was going to take me to the nearest emergency room. Poor G was in the back seat having to hear me the whole way. I did recover, but my body was worn out.
For IRONMAN 70.3 Augusta, I trained with different dosing patterns. I also had INFINIT! This changed the game for me. Although I did not finish the event, the experience was a great experience which provided me with a wealth of information.
As I wrote in my last blog post about Tobacco Road Marathon, I nailed dosing and hydration!
With Mountains to Main Street 70.3 triathlon coming up on May 19, I will again face the reality of dosing and hydration. It is a different schedule due to the starting with the swim (1.2 miles), then the bike (56 miles) and finally the run (13.1 miles). This event will take my body, and emotions, to different levels from a marathon. As I wrote this my nerves and anxiousness got going and my mind got to thinking. Should I dose at this point or that point in the ride or run? We shall see and as I said...
Death is NOT an option! I think Merrill would appreciate that, also! :)
To help me through my journey, please visit: gofundme.com/help-triing-by-50-spread-the-word. Any help is appreciated.