Learning the Ins and Outs of Adrenal Insufficiency #addisonsdisease #crohns #uc

What I didn't know about the adrenal glands

They sit on top of my kidneys and they regulate the hormones cortisol and aldosterone.  It really didn't excite me when they told me I was in an adrenal crisis, except when I woke up in CCU strapped to a heart monitor.  I really got nervous when I asked my doc what was the worst that could happen. He went through a few consequences like heart attack, stroke, and then death. "Sometimes," he said. "Death comes first." 

That got my attention. 

I remember thinking: how does this happen? 

They explained to me that it takes a long time to develop Addison's disease as the symptoms leading up to it are subtle. Like how many times had I told my doctors that I was so tired I could hardly move. Diabetes was in check with diet and although Crohn's was doing its number, this tiredness was different. It felt like I was dying, but I always attributed it to Crohn's.  

And then I ended up in CCU (Cardiac Care Unit). 

To help my adrenals, I have to take steroids every single day, at a certain time of day, and I am not to miss and if I do miss or forget or whatever, I am to take them immediately. While I am used to taking medications for Crohn's disease, if I miss a day, I'm not going to die. This is a whole new ball game. 

Up until now, all I had known about cortisol was that it was the hormone that made you fat.

Not.

​I mean, yeah on one level it does, but if you don't have it at all, you die. 

Weeks later, I am still learning how to pay attention to my body.  I am also a diabetic and steroids make your glucose levels insane. My purse is a pharmacy and it's heavy. Since I don't eat sugar (for the most part) my biggest problem is rapid drops in blood sugar. This morning it was 39 but I thought it was my heart rate making me wonky.

It takes me about 15 minutes to dial in my issue. If it's my blood pressure I need to drink water. Diabetes? I need to eat sugar if it drops. If it's my heart rate I have to sit on the couch and talk myself down. If it's a drop in blood pressure, I have to hit the floor before I pass out. 

Taking care of myself is a full time job. 

I take three steroid pills when I wake up and another steroid at the end of the day. I have to carry a syringe of steroids in case something happens, like if I get hurt or sick. It is highly recommended that I double my dose of steroids if I get the flu or a cold.

My new endocrinologist was horrified at the amount of steroids the hospital sent me home with just to keep my heart rate in check. Then she decided it was probably Crohn's disease causing the salt/water issue and while I was flaring I probably needed a higher dose of one steroid until things calmed down.  

I haven't had much time for writing because I am learning how not to die while living.  I am not nearly as scared as I was, but until Crohn's and Addison's is under control, I suppose my fears are a natural reaction. 

Just don't walk up behind me and shout. I have been known to leave my shoes behind while clinging to the ceiling.