Where to start? What to say for a first post? Perhaps that deep down, I knew something was wrong for a long time. But I had an intense belief that I was a hypochondriac and often, almost always, ignored or at least belittled strong warning signs that something was not working in my body. I would take care of small little things and pretend those were the big problems of my life. I remember when my Mum had to convince me to go to the hospital the first time I had a severe asthma attack. And the only reason my chronic appendicitis was discovered was because of the 7 cm cyst next to it. Or how my shoulder surgery wasn't scheduled until I lost control over two of my fingers in my left hand. I just have never been able to trust warning signs from my body. Increasing fatigue and pain over the past several years was brushed off. It's so difficult to admit that something may be wrong, that you can't stop severe illness, that even if you live healthy, exercise and eat right, your body may still have issues.
Well, last year I was finally diagnosed with endometriosis. It had gone rogue, tissue growing in places and causing pain where it never should, and it explained so many things. But all that was given was a VERY temporary fix and, surprise surprise, things came back again. For the past several months I often had to stay home from school, work, social engagements and church because I could barely get out of bed. I kept waiting for some doctor to fix me, but it didn't happen. I was battling something that required more attention than a once a month check up, but here I was still thinking I was some hypochondriac that had brought this on herself. That if i stopped being such a baby, the pain would shrink back. Because it wasn't really that bad.
In mid-march, I started having such awful pains that leaving bed for anything but school became impossible. I began living on percocet and attended the doctor's office and ER more than my classes. Worst part was, my doctor's were incompetent and uncaring. They distrusted my reports of pain and would not listen to my symptoms. My parents were going wild with frustration and started to find their own doctor, in Portland. One day, April 13th, I couldn't get out of bed. I was sobbing from pain and defeat, in front of my roommates even, not caring how embarrassing and childish it was, and called my parents. I flew home that night (wheeled to and from the gates because I could barely walk through security). Dropped out of school, a week before finals, threw my life plan out the window, to get the medical treatment I desperately needed.
With all the severe symptoms I was having, the doctor (one who finally KNEW what he was doing!) wanted to prep for surgery immediately, and follow up with aggressive hormone therapy. He had strong evidence to believe the endometrial tissue had grown through my intestinal wall and that I may even need parts of my colon extracted and resectioned. To prepare for this possibility, I was sent to GI specialist for an urgent colonoscopy that week.
Waking up from the procedure, I couldn't believe what I was hearing. There were ulcers in my colon. No there weren't. I have endometriosis. But there were ulcers in my colon. Yes, I have endometriosis, but I also have either ulcerative colitis or Crohn's disease. That's what the doctor said. I waited for him to leave the room and then I hunched over and cried. I wasn't coming in to get another diagnosis, I was looking for help for the disease I was already incapable of coping with. I felt so blindsided and overwhelmed, I couldn't stand it. It explained some of the pain I'd dealt with, severe digestive issues, not to mention losing 20 pounds and being unable to gain any back, but I didn't care, I couldn't handle any more bad news. When my mum showed up to pick me up, the GI explained to her what medications they'd start to get the inflammation down, but that no surgery for endometriosis could be done until the the inflammation in my intestinal tract was controlled. There were too many risks for death or complications, it would have to wait.
Ulcerative Colitis and Endometriosis. Two inflammatory autoimmune diseases that wreak havoc in the abdominal cavity that have been making my life hell for who knows how long. They've kept me in bed for two months now. They're keeping me in bed now. I had to withdraw from another semester and have just been waiting for surgery to be granted. I've had enough pain, nausea, tests, complications and delays to last me a lifetime. But it's only been a couple months and it's not going away. I'm trying to adjust my life, my attitudes, my beliefs and behavior to these problems--admit that they're there and take care of myself. It's a work in process.
Maybe this is a bit depressing for the first post. But this is where I started too. Hopeless and miserable and faced with problems you don't expect when you're 22 years old. I miss my old life so badly. I miss hockey, running, biking, yoga, singing, acting, performing, research, school, volunteering, succeeding in life, doing worthwhile things that made differences in my life and those around me. I miss not being in pain all the time, not feeling isolated by the circumstances that have separated me from my peers. But rather than just sulk in my misery, I've done whatever I can to help me reach a state of normalcy. I still have really bad days. But I have some okay and some good ones too.
This experience has changed me and physically, mentally, emotionally and spiritually, and I'm certain, for better or worse, I will never be the same. And I want to share as much of that journey as I can (and feel comfortable sharing of course) with those who might care to know.