Monday, May 30, 2011

What it means to be sick

I have felt so trapped in bed and my body these past couple months, especially this past week, that I felt like there had to be something I could do to escape. I won't go over the hundreds of things I have tried (and many I still do) to maintain my sanity. I'm proud that I've already filled up half a journal, taken up sewing again, and started writing in my book again. I'm not proud that I'm in too much pain to do yoga, that going out to lunch with friends is overexerting myself, and that I've spent thousands of hours watching movies and playing the Sims. But I am trying stuff, and this is another thing to try. Talking about the pain and frustration I feel with these illnesses is too hard for me, and I struggle with asking for help or sharing what I'm going through. I can't bear when people pull away right in front of me or the absence of compassion where I can see it. I wish I was stronger, but honestly all my energy goes into overcoming these problems inside of me. So I figured I could blog, put some of these feelings out there for family, loved ones, friends to see, and form their own reactions and opinions without risking hurting my feelings. May sound pathetic, but it's the truth, and for any of those who have experienced the isolation, pain, and frustration of chronic illness, you know what I mean.

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.

2 comments:

  1. Hi Rachel,
    Just read your blog. I am really sorry you had to go through all this and still are. I got diagnosed with Endometriosis 2 years back and I can understand your feelings.
    The diagnosis took a long time. Nobody knew what I had and I got treated for various colorful diseases !
    Anyway I hope you find strength through all this.
    Cheers !
    Veda

    ReplyDelete
  2. i think i got your name wrong. Oops sorry for that.

    ReplyDelete

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Contact me at bedriddenhead@gmail.com

About The BedRiddenHead

I want to be happy. And this site is about that chance. How to strive to thrive in the body I've got and maybe turn my experiences into something worthwhile.

This site aims to help educate and reach out to people all over that struggle with pain or illness. To try and make something helpful. I work as a medical research writer, my background is in neuropsychology and biology, and I want to share what I learn in a way that is easy to understand. I am not a doctor. I'm definitely not your doctor. I am just some lady who wants to make someone's (anyone's) life a little bit better. Whether you have endometriosis, a chronic injury, a struggling friend, or just want to learn something new, I hope to make a place that has what you are looking for.

Thank you for stopping by, I wish you strength in your health, struggles, and happiness.