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Learning Curves With a Chronic Disease

I never imagined that one day I would wake up sick and never get better again.

I'll never forget the day I woke up and never got better.

I was supposed to make it to college for an 8 AM lecture but instead it was 4 AM and I was on on the bathroom floor experiencing pain I've never had before. Imagine being sick with the worst flu... After days, weeks, months of this every single day I finally realized, "this is never going away."

After a year of trying to figure out what it even was that was slowly fading me into nothing; I lost 70 lbs, and I was no longer able to get to those 8 AM classes very easily. I had to drop out. I lost my job, I lost my dignity, and I lost all hope.

The diagnosing part was a whole different story. I started with a gastronomy (stomach scope) where they found nothing; a colonoscopy, where they found nothing; a CT scan, where they found nothing. So, I was told it was "IBS" (irritable bowel syndrome) and sent to a dietitian. After months and months of meal plans and dieting, my dietitian sent me back to the doctor saying, "something more is going on here" and back to the doctor I went.

That's when my doctor mentioned "endometriosis"; it's a reproductive disease when your uterus line starts growing outside of your uterus and attacking surrounding organs. It can affect everyone differently but only be officially diagnosed through laparoscopic surgery. I was sent to the gynecologist. 

The gynecologist immediately didn't think I had endometriosis when I had been showing early signs since the age of 12 with unbearable periods (which are NOT normal). He put me on a new contraceptive and sent me on my way. After three months of this switching birth control and taking it consistently to avoid periods he finally put me on "lupron depot," which is an every-three-months injection that puts your body through menopause. It is supposed to only be used for up to six months as it can cause osteroperosis but I was not aware of this at the time and was on it for almost two years. During these two years, I was still switching contraceptives every month to counter-act the side-effects of menopause. Finally he gave me laparoscopic surgery and cauterized as much endometriosis as he could and told me this was the cure. I never felt better, I only progressed worse. I took myself off the Lupron, suffered two agonizing periods and a cyst rupture three months later with no help whatsoever, lost my job due to not being able to be there because of the pain I was in, and finally was referred to a specialist a year after surgery.

I've been on almost every contraceptive in the book. I've tried painkillers, I changed my diet, and though I can manage now, this disease can change at any moment—it's scary. I have big dreams and twice now they have been revoked.

Once again, my disease has stopped me from doing what I love. Yes, sure it was a learning curve and there are no hard feelings but that's not the point. I worked for the best black and blue Great Dane breeder in Ontario. I loved my job. I loved my boss. I'm heartbroken that I need to go back to a regular job and start all over because of this awful disease. 

Why can everyone else do it but me? Why was I not refered to a specialist immediately? 

This disease not only ruins your life, it ruins who you are. I've already had to start my life all over twice. How many times will that have to happen until I lead a normal life? Or will I ever?

I want everyone to understand that EVERYONE is going through something. If you're sitting there reading this and even if you aren't someone with a disease and you just feel hopeless, understand that I know how you feel. Please don't give up. Get yourself up off the bathroom floor, get fired, quit, move, change your life again & start over. Do what you need to do to make yourself happy. 'Cause when you live a life of pain, you have to make it worth it.

#endosister #endometriosis

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