Monica’s Story

My husband, son and I drove 2 hours south to Phoenix on Sunday, 4/28/13 to celebrate my dads birthday. It was an awesome and relaxing day. Everyday up to that point was good. I was active, fit, and healthy.

Monday morning 4/29/13, everything changed. As I was walking into work, my heart started pounding, my legs became so weak I couldn’t hold myself up. I was shaking, sweating and trying to catch my breath. I thought for sure I was dying. I worked in the hospital and the charge nurse took my vitals and did an EKG. Everything came back normal except for an elevated heart rate. After resting for an hour in a pre-op bed with O2, I was able to finish my workday, but I did not feel right.

I saw my PCP the next day, still feeling terrible, and he ran some tests. Everything came back fine. He starting thinking that I probably just had an anxiety attack. From that day forward, I just didn’t feel right and knew my symptoms were definitely not from anxiety. Everyday felt worse than the last. I could no longer walk any distance without feeling like death. I couldn’t drive. I could barely work. I ended up in the ER a couple times and all they could come up with was possible serotonin syndrome. I stoped taking my antidepressants, but got no relief.

After seeing a new PCP and doing several tests, I got referred to an endocrinologist. My cortisol was coming back high. I didn’t fit the Cushings “look”, but test after test, after invasive procedure, showed that I most likely had a pituitary tumor causing Cushing’s disease. A tumor so small that it couldn’t be seen on MRI.

August 22, 2014, I had a transsphenoidal pituitary tumor resection. After the surgery and days in the ICU, my cortisol dropped very low. Hallelujah! They got the tumor and this nightmare was over!… so I thought. Because of the high levels of cortisol my body was living with due to the tumor, I had to be on replacement steroids so I wouldn’t end up going into a life threatening adrenal crisis. I was given a strict weaning schedule to get off the steroids and get back to my life as I knew it. After 4 weeks off, I returned to work and things were going fairly well with the weaning. I was finally able to drive again! December of 2014, I ended up in the ER. They thought I might have been at the beginning of an adrenal crisis. I got I.V. steroids and was told to increase back up to my original post-op dose of steroids and wean again. I was diagnosed with Adrenal Insufficiency (my body was unable to make any cortisol of its own). I was given an emergency injection to carry around and was told I needed to wear a medical alert bracelet at all times.

From that point on, Everything just got worse. Once again, I could no longer drive. Every morning was complete hell. The weakness, body pain, malaise, lightheadedness and brain fog were so intense, I found myself calling in sick at least twice a week, or having to call my husband to take me home midday. I cut my work hours hoping it would help, but I kept feeling progressively worse. My steroid dose was going up and down between trying to wean and trying to prevent a crisis. September 2015, I decided to call it quits from work (at the advice of my doctor). I had tried everything. Functional medicine, testing, meds, second opinions, different specialties, and got the same response “we’re not sure why you still feel so terrible”. They all felt something was going on in my body that was causing a demand for the steroids that I should have been able to get off. I tried weaning over and over with no luck. Every time I’d get below a certain dose, I’d start having adrenal crisis symptoms and have to either take a hefty dose of steroids, or use my emergency injection.

Time off work to relax and rest should have done the trick, but it didn’t at all.

Here I am today, housebound, and unable to do much of anything. No traveling, no exercise, no helping grocery shop, and only leaving the house for doctors appointments and small family get togethers, while needing assistance from a cane. If I do any of those, I end up in bed for at least 24-48 hours recovering.

I’ve seen so many doctors, and have had so many tests. I struggle everyday. The fatigue and pain keep me in bed until around 11 everyday. I can only bathe 2-3x a week. And I’ve been denied disability multiple times, that’s a whole other trial. My quality of life is terrible.

On top of the Adrenal Insufficiency, I’ve been diagnosed with POTs (Postural Orthostatic Tachycardia Syndrome), Fibromyalgia, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and a few others that are probably a result of the steroids. I have to take up to 25 pills per day and while the meds take the edge off some symptoms, I struggle daily.

I will not give up. I have the most incredible husband that takes such good care of me. A 17yo son that helps so much. And a family and some friends that are beyond supportive. I look for blessings in my everyday, and there are still so many. Especially my pups that keep me company everyday. Staying positive and having faith is the only way I get by. I’ve wanted to give up many times.

Adrenal Insufficiency is a life threatening disease. We take steroids several times a day, everyday, that keep us alive. We have to increase our steroids when we encounter stress or illness. At times, we have to use emergency injections when taking pills won’t act fast enough (trauma, GI episodes, etc)

Luckily I found support groups online, have learned so much and made many friends. I feel less alone.

I continue to fight for answers. I will feel better one day.