A Writer's Life Interrupted #crohns #addisons #life

The human body is an amazingly complex system of hormones that communicate with each other telling the organs what to do. When your adrenals stop working, all hell breaks loose. 

I had suffered multiple symptoms of adrenal insufficiency for quite some time, but I always attributed it to Crohn's disease. The mornings were difficult and I was used to using will power to get myself to work and it didn't surprise me that I sometimes fell asleep at my desk. I had grown used to that type of  behavior.

Then there was the exercise intolerance. I could not walk more than a block or two or I would be out of commission for days. What I mean by this is besides fatigue, I had a brain fog like some energy vampire sneaked up behind me and drained me of my vitality.  I spoke of this with my doctor who ran a few tests and discovered I was hypothyroid. A little pink pill would put me right and when it didn't, I just figured it was Crohn's disease. 

Week before last, I had the usual symptoms of my head swimming and black spots forming in front of my eyes. When I came to, I was in the laundry basket in the bathroom. How I got there was beyond me and after yelling for the husband, he came in with an odd look on his face and said, "Don't you think you need to tell your doctor about this?"

After my doctor asked me to keep a record of my blood pressure, I discovered I had these bizarre dips in blood pressure and a faster than normal heart rate. I was on Atenolol, which is a blood pressure medication and attributed the lower blood pressure to lost weight during a bad Crohn's flare. 

One week ago last Friday, my BP was 60/49 with a heart rate of 155. I knew that was bad so I called my doc and she sent me to ER who admitted me. Of course, I thought it was Crohn's disease. Two days later, when the doc told me my adrenal glands weren't working and that while I was still on 20 mg of Prednisone, even when they forced my adrenals to work, they didn't. I just nodded my head and waited for his verdict. 

"Addison's we think." 

I nodded again. 

"We need an endocrinologist to see you right away, but we are hopeful we can get you stable for now. Do you know what adrenal insufficiency is?" 

I shook my head. 

"Do you know what an adrenal crisis is?" 

I shook my head and vomited. Damn Zofran wasn't working and I thought my heart was going to ratchet out of my chest. I was in CCU and they had me hooked up to a heart monitor. I wasn't allowed to walk. If I had to use the rest-room I had to call for a nurse who would walk me back and forth and that was all the exercise I was allowed. 

"We were thinking adrenal insufficiency from the Prednisone, but that doesn't cause your Aldosterone to stop working."

I nodded. While I can follow most medical issues, this was way over my head. I just wanted him to leave which he did and  I went back to fiddling with my phone. When your heart is up to 158 bpm the last thing you want to do is sit still, but just a few steps caused me to get out of breath. They shot me full of steroids while I was in the ER and they continued to do so three times a day by IV, so I was better, but nowhere near normal. 

I was scared and looking for distractions. I looked up Addison's disease and adrenal insufficiency and discovered both had the same symptoms. I looked up adrenal crisis and discovered that if I hadn't gone in when I did, I might have died. I remember the ER doctor saying so, but hadn't processed it at the time.

No, I needed a real distraction. So, what does a steroid high woman do? She writes a controversial post on Facebook about MemoGate. Not the best decision to make when you are told to keep calm. I showed my doctor. He banned me from Facebook for the duration.  I laughed, but did as I was told. 

On the fourth day, they found a combination of steroids that worked. It wasn't a perfect combination. That has to wait for an endocrinologist, but it allowed me to go home. I told my sister-in-law, who is just finishing another round of chemo and radiation that we were going to take up Yoga. Surprisingly, she agreed. Although neither one of us is capable at the moment. 

It is not enough to say I am still struggling. I don't produce any cortisol so around three in the morning I wake up in a sweat, grab my salt tablets and down two glasses of cold water and that is after two salt tablets and two glasses of water at ten. I run a regular fever of 101 each morning due to dehydration. My body no longer processes salt so I take salt tablets, salt my food, and even put salt in my drinking water. I take the hormone that is suppose to help my body retain salt, but it isn't enough.

There aren't a lot of endocrinologists around here so the wait time is long. In the meantime if it gets worse I am to go to the ER where they will admit me and start the process over again. 

Anger decided to overtake me the day I came home. I threw a few things, cried, then berated God and then myself. By the time I was done, I had come to several conclusions:

Life is good, life can be hard, but mostly, love is more important than anything.

It never ceases to amaze me that my dear friends, children, grandchildren, and husband love me. I don't know why, but it does. 

I wrote in my journal: Be not sad for me when I go, but remember the love I take with me.

Who could ask for more?