My first encounter with chronic illness came when I was 17 years old. I was in high school, living with my boyfriend, trying to start a life. One morning I woke up with a crazy case of diarrhea, cramps, burning stomach & a feeling similar to having an apple stuck in my throat. On top of that, I was absolutely exhausted and couldn’t drag myself out of the bed. I missed school, took over-the- counter medicines and figured it was a virus. The symptoms continue for a number of days; I ate clear liquids, baby food and a bland diet but it didn’t help. At that point, the family speculated I was pregnant. It didn’t take long to dispel that myth, but the pesky symptoms persisted and the diarrhea was having a really negative impact on my day–I would have to leave class unexpectedly and ALWAYS had to hit the restroom between each class. The bus ride home was unbearable and by the time I got home, I was too exhausted and sick to eat.
My weight was plummeting; after a month of symptoms I went to my family doctor. He did a barium enema and diagnosed me with irritable bowel syndrome in 1982. He told me there was nothing I could “do” for it and it couldn’t be fixed. However, he quickly assured me it wouldn’t “hurt me”, just be an inconvenience. Oh what an inconvenience it was….. He told me to increase my fiber intake and use over the counter diarrhea medications. Sooo…that’s what I did. Aren’t doctors supposed to know?
Adding to the mix, I lived in an isolated area and had to drive an hour to work every day–of course that also meant an hour home. I had four restrooms staked out and stopped at all of them twice every day. On the positive side, I made a lot of friends! Of course, I always hoped nobody was waiting to go in after me….That’s all I’ll say about that. I also ALWAYS carried a change of underwear and pants. Yep, it happens and life doesn’t stop. Hadn’t I been told to cope with it?
Years pass and my weight remained chronically low, I was always wiped out, waking up at night with awful abdominal cramps and rushing to the bathroom. I was “going” 12-20 times a day or more, even taking OTC medications. Some days I couldn’t leave the house. I had no appetite, periodic rashes, sores in my nose and mouth, achy low-grade fevers., sore joints and a hacking cough. I was REALLY YUCKY and barely managing my life. I decided it was time to go to the doctor again.
I go see my family doctor (not the same one as before) and she started out with the “Oh it’s stress” and “Let’s make sure it’s not parasitic.” Yes, really. So I was sent home with a pat on the head, two sample cups with popsicle sticks and instructions to come back with samples. Of course, I had no insurance and each trip to the doctor was $75 back then, so I couldn’t afford to go back and I thought her pat on the head was condescending bull shit. I spent years navigating a system that was stacked against “poor people” and it was like being mired in quicksand. I couldn’t get past the “Oh, it’s stress honey, you have a lot going on. You poor little thing–you’re so tiny. You really should eat.” I was convinced I was “hysterical” and unstable. What a joke.
I was also convinced that I was weak and wimpy. Apparently everyone lived like this and managed fine. It’s all in my pitiful little head–according to those “in the know”.
Year after year passed. I became a nursing student and still knew something was wrong. I didn’t pursue a diagnosis because I was a pro at “managing” and the thought of being blown off again was unbearable. My symptoms became worse and worse, I had rashes all over and caught every bug that went around. My joints hurt, my stomach hurt and I had a fever. I trudged on. Finally, in 2004, the train jumped the track.
I came home from work and crashed on the couch as I normally did, aching and chilling. When I checked my temperature it was 102.0, which was much higher than usual. My abdomen was killing me and I felt beyond awful. As I sat there crying, I decided I had to get answers or die because I was too exhausted to breath. Then I began hallucinating from fever….That night I went to the ER, hoping to get an antibiotic prescription and instructions to follow-up with a Gastroenterologist. Instead, I was admitted to the hospital with a bowel abscess and stayed in the hospital for nine days. When I was finally discharged I came home weak, shaky and on a ton of antibiotics. My initial diagnosis was diverticulitis. I didn’t get better though, and at my follow-up with the specialist, he scheduled me for a colonoscopy.
After my scope was finished, I drowsed and languished on a stretcher, still half-loopy from the versed and diprivan. The doctor came in, leaned over the stretcher, put his hand on my arm and said “It looks like you have Crohn’s but we’ll have to wait for the biopsies to come back. I’m leaving you a ‘script. Take it and see me in two weeks.” Then he was gone. I felt like I was taking orders from him on the clinic floor. Nurses don’t require wordy explanations–lay it on the line and get out. That’s what he did but there I was–stoned and confused.
My Sweetie was my chauffeur that day. When I got into the car he asked me what the doctor said. The whole thing felt like a dream. I told him I had Crohn’s disease and explained a little bit about what it was. Most of it was retrieved from the small amount of time I spent on it in nursing school, so I knew I had a lot of learning to do. Remembering my classes on Inflammatory Bowel Disease, I recall thinking “I bet that’s me.” Damn, I was right.
My Sweetie was so optimistic saying “You’ll take it in stride and manage it like you do everything else.” He wanted to be reassuring and supportive. I felt bleak and desolate. I was totally wiped out and NOT managing…..
I tried to go back to work after a couple of weeks, but was still so sick I couldn’t fix myself a sandwich without resting. My manager saw my condition my first day back and sent me home. She encouraged me to use my short-term disability option, so I did. I was truly miserable. Still on high doses of steroids and antibiotics, I couldn’t sleep, was in constant pain and had no hope for manageable treatment. This cycle continued for two solid years. In the hospital, off work, on TONS of medications, feeling awful, paying $1,000 a month in medication co-pays, getting more behind financially every day. Finally, I filed bankruptcy, quit my full-time job and started working part-time. Over the next three years, I started doing better & better but I feel like I’m balancing on the edge of a razor blade. My life will never be the same.
Every day I plan my life around taking my medications, keeping a positive outlook and maintaining my health. I sleep enough, I take off work when I feel bad, take my medications like I’m supposed to and generally try to be pro-active in staying healthy. Now, my days are thought-out and planned. I have to have rest periods and take breaks where before, I used to barrel right on through. When I do too much on a given day, it takes me 2-3 days to recover; when I have a flare, it can last for months. When it’s over, I still feel different. “Friends” drop off of the radar like flies. On the good side, I know who my real friends are now. The list isn’t as long as I thought it would be, but it is very strong.