I made a spinach salad, at home, for dinner. It was almost four years ago... it was 2006. And that particular night, my daughter said she didn't want to eat her salad. And I didn't push it. I said a couple times, "Eat your salad," and she said no and I let it go. I think that was the 23rd of August.
Two days later, I started feeling sick. It was a Friday and I was at work. I thought it was no big deal - probably something I ate - and wondered if I should go home and decided to stay at work, but then began feeling a lot worse.
That Saturday night - I'm a professional vocalist and I had two gigs, one right after the other. I had a retirement party that was a really fancy, elegant sort of event and we were the entertainment for that - we were a trio -, they had a beautiful dinner with everything, and I couldn't eat anything. Everything I ate was making me sick so I asked the person for an herbal tea, tried to get that down, and then I went to another gig that started at 9pm and went until 1am.
I kept feeling lousy, and then the next morning I had to get up early and get to the children's choir that I did at the time at a church. I remember sitting there thinking, "I can hardly stand up. I don't know what's wrong with me." When you haven't eaten for a few days, you feel lousy, but this was something else.
So I went home and I had a lot of cramps, a lot of bloating, a lot of diarrhea, and I was really nauseous, and I went to bed. I'm a single mom - I was then too - and you don't want to be all emotional with your children because they feel it. They sort of tune into how you're doing. I stayed in bed all day Sunday, I went to work Monday and left work early. Tuesday, Wednesday I stayed in bed. I was lucky that my daughter could walk to school herself. I was progressively getting more and more sick and because I wasn't eating, there wasn't a whole lot to go through me at that point. I was drinking water until probably Tuesday or Wednesday and then I couldn't even drink water, I had such bad cramps.
And then it turned bloody. And I thought for sure I was hemorrhaging and I was dying of something and I had no idea what. I wasn't sleeping much...the cramps reminded me of labor cramps because it was on a certain schedule and you knew they were coming. It would be really bad cramps and then I'd have to run to the bathroom and it would be blood. The word for that was "unrelenting." And it was every hour, and then it was every half hour, and then it became every ten, fifteen minutes. All the while I was wondering how I could continue to take care of my daughter, that was my main concern.
Thursday or Friday morning at 2am, she called a friend and he came over. All he could do was sit with her until the morning. At 7am, he had to leave to go to work. Then she called the doctor. He told her this was nothing to ignore and to get to the emergency room.
I went to the emergency room - I got a ride... I had health insurance but I knew it was only for a certain hospital and if I went to a different hospital, I had to pay a certain percentage. But I couldn't find the paperwork and I was in no shape to do any research so I was really worrying about money. And the hospital I had to go to is the teaching hospital here, and it's also the hospital where everybody goes who doesn't have insurance, so I knew it was going to be a bit crazy, and it was even crazier than I imagined.
I sat there for hours before somebody saw me and I continued running to the bathroom. Finally they put an IV in my arm but it wasn't hooked to anything else and it was chaotic... finally I got into an exam room after six hours. He did a rectal exam and asked me if I was having anal sex. And I said, "Of course not."
The emergency room discharged her, saying the reason for rectal bleeding was "unknown." They also said that a gastroenterologist would be calling her in a week or two! Bonita was too dehydrated and ill to even walk, but they didn't even offer her a wheelchair. Her friend who drove her asked for one and obtained it for her. After he drove her home, as she put it, "I spent another night sure that I was bleeding to death." The next morning, the first doctor she had called (prior to going to the emergency room) had succeeded in getting her an appointment with a gastroenterologist that day. Bonita had now been sick for a full week.
She continues:
I got a ride to go see the doctor and she determined that she was going to admit me right away. She said "There is no way you're going anywhere but to the hospital." My blood pressure was extremely low and I was really dehydrated. I had a lot of issues still about money and I kept saying, "I need to think about it," I was told "You can't even think about this. You'll be in a coma by tonight."
So I went in the hospital and I still didn't know what was wrong with me but the people in the ER could have simply done a culture, they would have known - but they didn't. I found out later that the people in the ER were not trained at that time to do cultures. Now I hope it's changed, but at that time it didn't even occur to them to do that. And I'm allergic to narcotics so they couldn't give me much for pain.
The doctor that I ended up seeing [the gastroenterologist], she saved my life. She didn't have admitting privileges at [the hospital where Bonita had insurance coverage], she only had admitting privileges at [a different hospital], so I went there where I was pretty sure I didn't have full coverage.
In the hospital, the doctors wanted to do a colonoscopy, but Bonita was too exhausted and dehydrated. So she spent her first night resting as they gave her intravenous fluids.
I had to drink this awful liquid to clean me out and I wanted to say "You have no idea how clean I am. There's nothing coming out but blood right now." But they could do a culture from the blood and they found E. coli. And then they went into the colonoscopy process, at which point they cauterized my intestines to get them to stop bleeding.
Later on - that day or the next day - it is all a blurr - I was given a handout from the nurse that she got off the internet about E. coli... And the doctor on call had put me on antibiotics because that was what he thought was the normal course of treatment... but the handout said that antibiotics were contraindicated because they could cause kidney damage. A friend says she also told me this but I just don't remember.
For patients with E. coli, antibiotics kill the bacteria, causing it to release a lot of toxins all at once. That's why you don't give antibiotics to somebody with E. coli. The result is Hemolytic Syndrome.
So I said to the nurse, "I don't think I should be on antibiotics because of that handout you gave me. Why am I on antibiotics?" and she said, "Let me check with the doctor." The doctor who admitted me [the gastroenterologist], my savior, said " You shouldn't be on antibiotics!" and took me off of them. There's no real treatment for [E. coli]. Once they determine what it is, you just have to let your body face it and take care of it...
What I was told when I was discharged a couple days later was no caffeine, no alcohol, and I couldn't eat anything raw, I could only eat cooked food. So I have been struggling for almost four years now with my digestion because there's not a cure or a treatment. I went back to the doctor and had a number of tests done because I swell up like a balloon at times, which I was told was kidney problems, and I still had a hard time staying hydrated. But given their parameters they said there was no kidney failure, there was perhaps kidney damage. I was also having a hard time walking with severe pain in my hip and it was determined by a chiropractor that my soaz muscle, which had cramped up so much from the infection, was pulling my hip out of its socket.
I have diarrhea every day. It's been that way since. And what the doctor said is that I probably had irritable bowel syndrome, but I really don't think that that's the case because irritable bowel is constipation and then diarrhea and then constipation and then diarrhea, and I just always have diarrhea.
So I went, finally, to an Ayurvedic doctor and she said, "You were just born and got sick in the wrong country. If you were in France, they would have put you on this clay right away. And I asked, "What kind of clay is that?" And she said it's three kinds actually, and they mix it together", and basically, you're eating dirt. But it's the only thing that has helped me. It's the only thing that has made my digestion not constant diarrhea so that I could at least get some nutrition from my food. Kaolin clay, diatomaceous earth, and bentonite clay. So the three of those together helps.
But back to those first days out of the hospital, before she knew what made her sick...
Then I'm out of the hospital and I'm at home, and I still don't know what caused this... I'm freaking out, sterilizing my kitchen so that my daughter doesn't get it. As much as I was trying to shine it on for her, I really was pretty sick. I was in and out of consciousness and my daughter was there a lot in the hospital... At one point she crawled in bed with me and whispered in my ear "I'm worried about you Mama." And I said, "I'm going to be fine." You know, just shine it on.
So when I got home, all she wanted to do was stick with me. She crawled in bed with me and I read to her. My sister, who lives in New Hampshire, called me and said that her daughter, who lives in California, heard that they were recalling lettuce for E. coli and did I have any lettuce? And I looked in my refrigerator and there was a bag of spinach. And I thought, "Well, OK, could be that." It was a two week old bag of spinach that was still there.
And when you have any kind of infection like this, you know that the Department of Health is flagged by the hospital, and they called me to do a really long phone interview. They were trying to determine outbreak status. They asked me a lot of questions about the water I drink and where did I get it and what had I eaten. It's kind of hard to remember for two weeks what you've eaten but I mentioned the bag of spinach and said, "Do you want it?" and they said, "We'll call you back on that."
So about two or three hours later, somebody called and said, "Somebody's coming over to get that bag of spinach," A woman showed up, this young woman, she acted like she was going to a chemical explosion. She had a big kit and a big ice chest and - it was kind of funny to me that she came in the kitchen all sterilized to get my bag of spinach.
They then got the DNA from it - the DNA signature by electrophoresis - and it matched! So there was E. coli in the spinach that had a particular signature and it matched the signature of my infection. And apparently it matched a lot of other people's infections in the nation... One person called [her spinach] "the smoking bag of spinach."
I have tried to forget about my E. coli experience and move on, but my body and mind remember it daily. I have a sense of vulnerability to food that I assumed was healthy for both my daughter and me. Her health is as important to me as my own, and now I am fearful about routine food choices. I thought I was dying at several points during my illness and this has left me shaken to the core.
I am tired most of the time, not sleeping well, and my stress level is often overwhelming. I continue to experience physical problems - muscle soreness, lack of appetite, digestive problems (cramping & bowel movements several times a day), loud ringing in my ears after eating, inflammation, and joint pains. I have recently been diagnosed with osteopenia which is bone mineral density (BMD) that is lower than normal peak BMD with my bone density at 85% of what it should be for my age. My future feels uncertain in ways that I have never experienced before.
Only a single parent could understand how frightening this is. The fear never completely leaves me and so I can never relax, even when I am at work or involved in my singing and voice teaching. I pay the rent, but I am always stretched financially and now am deeper in debt as a result of my inability to handle as many voice students as I need to, so my monthly bills are not being met. Trying to keep my daughter's life stable and full of her usual activities has become far more difficult. Even though I am working more than one job, I am incurring more debt just to keep her from being impacted by all of this. Over the past few years, while I have been trying to heal physically and emotionally, I have been working harder, sleeping and eating less, and falling farther behind financially.
This has left me short tempered on occasion, which is very uncharacteristic of me. My daughter is doing fine because I have worked so hard to maintain her environment as it was before this happened. Before I got sick, I felt capable of doing whatever it would take to meet all of her needs, manage my job, continue singing, my friendships, and my financial security.
But now, all of this feels uncertain, fragile and extremely vulnerable. I have no reserves emotionally. Sometimes, I panic. After my daughter, Hannah, goes to bed at night, I sometimes dissolve in tears. My outlook on life has been shaken to the core. I have new issues with trust that I don't even understand. I may have too much pride, but I refuse to be seen as a victim for the rest of my life, but that is how I feel at times. I am grateful every day that my daughter refused to eat her salad that night. |
