Schmidt Syndrome: An Uphill Battle Against Myself

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

It's Me Against 'That' Pain: Endometriosis

We have been on the look out for stories!! In a search for more stories we came across a wonderful story of motivation and strength since a young age. Endometriosis is a condition too often experienced by females of reproductive age. Individuals with this condition can present without any symptoms or be faced with cyclical episodes of severe and often debilitating pain. 

As many of you may already be aware, menstruation comes with cramping pains of its own. In endometriosis the pain can be quite the horrifying experience and many females across the globe experience this regularly. As mentioned above, the symptoms of this condition vary across a wide range from minimal to significantly severe. Often individuals are diagnosed based off of their pain history and physical exam. Imaging may indicate other features of the condition but often does not offer a definitive diagnosis. Due to the estrogen dependent nature of endometriosis, many females choose to consider hormonal contraceptives (birth control) or pain medications such as ibuprofen as a way to deal with the pain. Moreover, surgical management has been reserved for extremely severe cases due to the complications that surgery imposes to patients. For this reason, many individuals continue to struggle with this condition. 

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I’ve had endometriosis since I started menstruating at the age of 11 years old. I had the most debilitating periods filled with extreme pain, constant vomiting, and being bed ridden for at least 1-2 days a month. I missed out on school, extracurricular activities, friend and family events, and celebrations because of my condition. However every time we sought a professional opinion, my mom and I faced a dismissal with  “it’s normal”.

Really? Your body being in undeniable pain for days on end, month after month, year after year…is normal? I could not rest not knowing what was wrong with me and something was wrong, I was certain. 

Around the time I was 13 or 14 I was reading a women’s magazine my mom had laying around and one article was talking about something called endometriosis. I hardly knew how to pronounce the word so having heard about it was out of the question. As I read the article, my heart started beating quicker and my palms began sweating. They were explaining each and every symptom that I suffered with for the last few years. I wanted to cry with relief. There was finally an answer to what was wrong with me. 

But there was no cure. To this day it is a very misunderstood and understudied disease despite it affecting millions of women worldwide. Statistics show that 1 in 10 women have some form or stage of endometriosis. That is 10% of women worldwide. And yet we don’t have many answers. It takes a women easily 10-15 years to be diagnosed. 

The same was true for me. Despite having an inkling that I had this disease, I received no confirmation. If anything I faced denial of acknowledgement of my complaints and pain. They said the only medication was birth control. 

So time went on. I got older, I graduated university and got a job but my monthly visitor brought pain and tears every single time. I continued to miss out on classes, exams, extracurriculars and everything else. One time I was even bedridden on my 20th birthday. I was so internally upset that my body was failing me like this and no one could help me. I was missing out on life. 

I am still working hard to understand my body and work slowly on changes to better myself. It has been a long and very turning journey and the finish line is still not in sight. I try to remain as positive as I can and lean on the people that can understand me, my pain and how’s it’s shaped my life. In a way I’m also thankful to this disease. It’s taught me patience and empathy and blessed me with a never give up attitude. Yes, I still don’t have my disease under control but I try every single month again and again in hope of relieving myself. And the day will definitely come. 

I don’t just hope it will, I know it will!   

                                                                                                            - Anonymous

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Interested in more information. Check out this website with detailed information on endometriosis, symptoms, diagnosis, and management: https://www.uptodate.com/contents/endometriosis-beyond-the-basics

                                                                                                            - D & R