I was maybe 18 years old when my mom passed away. She would often complain of being tired and say she is tanning by sitting indoors. This was back in the 1970's when North America did not understand Addison's disease the way we do today. Schmidt syndrome is an autoimmune disorder where there is a loss of function of the adrenal glands and the thyroid.
When I was in my 20s I was diagnosed with Schmidt syndrome, similar to my mom.
Prior to my diagnosis, I noticed weight loss even though I was eating a lot, I was so tired, my skin pigment became darker especially around my knees and mouth. I recognized that my mom had similar features but I kept putting off seeing my doctor. I think at that time I was in denial and not fully recovered from losing my mom.
The day that forced me to face my diagnosis was when I had my first adrenal crisis. I was walking by the river near University Hospital when I suddenly felt severe belly pain, started vomiting and felt faint. My friends carried me to the emergency room, but at this point I was so disoriented I had no idea where I was or what was happening. I was told that I have Schmidt's syndrome.
Now I take replacement hormones to protect myself from another crisis. I have to be vigilant and make sure I take my medications on time and take extra dose if I am in a stressful situation. I have a little kit where I keep my cortisol injection so if I do face physical stress from commuting or activities I can give myself the life saving boost if needed.
Prior to all of this, I was a hiking enthusiast and often enjoyed time in Banff. Now knowing the stress this activity can place on my body I became fearful. I remember that same summer visiting Banff, I stood frozen in front of the start of the Sulfur mountain trail. I was imagining what it would be like to stand at the summit with the fresh mountain air filling up my lungs with every heavy breath and the views that would try to take my breath away.
But I could not...
It wasn't until a few years later when my endocrinologist talked me through my disease and provided me with instructions on my cortisol shots that I started to increase my outdoor activities. To really test myself, I decided to travel to Europe with my significant other. I was able to monitor my stress and medication needs. At the end, I faced amazement to the fact that I was able to enjoy Europe without an adrenal crisis. This experience helped me regain confidence in my body. I felt empowered and in control for the first time since the diagnosis.
My one take away for anyone reading this is you can overcome the challenges imposed on you. Yes it sucks at first. But like hiking up a mountain, there will be times when you want to quit or sit down and feel sorry for yourself for even starting. You are allowed to sit down and take the time you need, but do not give up. Take control of this body given to you and keep going. I promise you the view from the top is always worth it.
-Anonymous
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