Three days ago I thought Baby Blueberry was on her way. For the past two weeks I have been having contractions; painful practice ones that remind me that childbirth is a little bit painful.
But Monday night they started, continued through the night, disrupting my sleep and kept going right into Tuesday. By the time we picked up Bean and Abu from school, they were rolling in every 2-4 minutes and lasting a minute at a time.
And whew...they were painful. Suddenly, the practice contractions I had been having in the last two weeks were just minor aches in comparison.
Hero Hottie thought we should probably go to the hospital. I agreed with him as soon as I could take a breath again. We sent the girls off to Grandma's, packed a few things, made a few calls, and left.
He drove because frankly, I had trouble even climbing into the mini van because of how bad it was starting to hurt, let alone drive.
At our hospital we have to check in through the ER, which I have to disagree with. Sending a pregnant woman through germ heaven seems a little silly. I tried not to touch too many things. And I stayed far away from the coughing patients waiting their turn.
Now, during my last two deliveries, the hospital had certain policies and that was it. You had a choice...to agree with them. But this time, I wanted more control over my experience. I found a doctor that was open to the newer ways of looking at childbirth and allowed me to write a birth plan.
(They aren't newer ways, I'm not taking the placenta home and eating it. But I want a less medicalized birth. Less policies and more just listening to my body.)
Still, while I waited for the delivery nurse to come down and get me, I figured she would be bringing a wheelchair for me. I hate the wheelchair while I'm in labor. I don't like to sit down while I'm contracting but it's hospital policy. I guess a woman in labor can't walk anymore, even if she wants to.
But when the nurse arrived, she didn't have a wheelchair.
"I read your birth plan before I came down here. I saw that you want things as natural as possible so I figure you would probably want to walk."
I was flabbergasted. Hell, yes I want to walk. And so slowly, because contractions slow you down, we walked to the maternity floor.
And that was only the start of all the wonderful changes they had made to the concept of giving birth.
First, the gowns were tailored made for a pregnant woman. Oh, my goodness. Seriously. How long did it take the medical system to realize that a laboring woman doesn't feel comfortable in a gown made for a 300 pound man? This gown was sewn to be fitted around my feminine form, with room for my huge belly. It was pink and soft and didn't leave a gap in the back so the entire world could see my bottom. I had been planning on just wearing my sports bra for delivery but I can deal with this gown. And on top of that...it has snaps in the front so later I can breast feed without stripping the entire thing off.
The robes are soft, fluffy and pink. (Pink seems a little stereotypical for a pregnant woman but I don't care about the color.) They were real robes, not old, nasty hospital gowns turned backwards, and used as a robe. I wouldn't mind taking it home, it was so comfortable.
I was taken into the triage room to determine if I was really in labor or just thought I was. The nurse offered me and Hero Hottie bottle waters, to stay hydrated. And then asked if I needed any juice and gave me a huge list to pick from. Wow. I was beginning to feel like royalty. I thought, from my previous delivery experiences, I was going to have to fight for a cup of ice cubes and some attention.
She hooked me up to the monitors. Baby Blueberry's heartbeat was a wonderful sound and it was strong and steady. The other monitor to keep track of my contractions clearly showed that I was having strong, steady contractions. This had to be labor.
I was breathing through the pain when they would hit, watching my uterus form a tight, little ball and then feel Baby Blueberry complain heavily afterwards, with lots of wiggles, stretches and powerful kicks. She hates being squished.
The nurse checked my cervix. I was sure I was at least at 4cms. If not more. With these contractions I had to be quite a bit along.
I think she thought so too, because she starts frowning as she realizes where I am at.
"You're at 2cm." She says, sounding disappointed.
Whoa. Back the delivery truck up. 2cm? That was it? Almost twenty four of contractions and over an hour of serious contractions and that was it.
"Well," she says, "if you want to walk around the halls for an hour, we'll check you again and see if things pick up. Otherwise, you'll be better off at home."
"Lets walk." I agree. I'm still contracting and I might as well try for a bit. But 2cm is depressing.
She grins. "Just stay on the hardwood floor area. That's the maternity area. If you start walking the other parts of the hospital they get really nervous that you'll drop a baby on them."
I nod and start walking the halls. It's a big loop and I have the entire thing memorize in an hour. I saw a couple of babies and they were so sweet. It made me want to hold Baby Blueberry. I can't wait for her.
After an hour. Recheck. 2cm. Contractions are starting to finally...slow down. In three more hours they will stop.
Damn.
The next day I had a doctor's appointment. She says that can happen. The body is warming up, doing things in stages so when it's time, everything isn't changing all at once. My first two weren't like that, once I started with the contractions, I didn't stop until I had a baby.
This little one is teaching me patience. Perhaps she got shy. She does tend to get really quiet and still when she hears unfamiliar voices.
Perhaps she just needs a little bit longer.
I just need to enjoy these last few days of quiet. Enjoy the wonderful feel of her moving in my womb and responding to my voice.
I just need to remember that she made it full term and all those months of bed rest and taking it easy has allowed her to grow strong.
Some time in the next two weeks Baby Blueberry will be here. She just wanted to test things out. Prepare herself for the real deal.
She just needed a practice run.
Friday, August 31, 2012
Thursday, August 30, 2012
Home Again
If this story was a blockbuster movie, than after I got done folding my load of laundry, Hero Hottie and I would have looked at each, blissfully happy and that would be the end of the story.
It wouldn't take years to truly recover our relationship, but when we did it was better than before. It wouldn't take years to recover our lives and it wouldn't take years to heal emotionally from that tough time. But it did.
We watched a movie that afternoon. And if you can believe it, we watched Nanny McPhee. It was an odd choice but the only thing available.
And for once, I actually remembered the movie. In the nine months before the hospital, any time we watched a movie together, I was in so much pain and my brain was so foggy that I wouldn't recall much of the story at all. Even to this day, Hero Hottie will mention a movie we watched during that time and I can't remember it. It's a blank. A frustrating and ugly reminder of that time period.
The girls stayed with Grandma and Grandpa for a few more days until I was ready to have their busy in the house again.
It was the sweetest moment when they came home and their little arms wrapped around me. I closed my eyes, savoring their unique smell. Their little kid scent; freshly washed and then warmed in the summer sun.
Their eyes were wide as they studied me, especially Bean's since she was older. Her attention never wavered off me that day, following me around, watching for signs of me being sick, slow smiles creeping across her face as she realized things were better.
The next morning, when she got up; she hopped out of bed and went right for the kitchen. Just like the days before she was going to pour her own cereal; make her own meal. I was already up. What a victory. I was already out of bed and had the energy to take care of my children right from the start of morning.
It was such a simple thing...managing to get out of bed without feeling like I was going to black out...and it was such a blessing to start feeling normal. Mundane. Routine.
I stopped her in the kitchen and told her to sit down at the table. She frowned, sitting down, her intense focus on me, never wavering. Abu joined her, clutching her blanket but with grins on her face.
It was just cereal. But I got it out. I poured the milk. I set it on the table in front of my children.
Bean and Abu stared at me, spoons in their hands and for a moment- time was frozen as we all looked at each other. Mommy and daughters.
We had gone through a dark and hard journey together. Day in and day out, just struggling to hold it together.
And in that simple, sunny moment with just a normal bowl of cereal and a kitchen table; we all realized that we had made it through that journey.
That we could move on to the next chapter in our lives. A better chapter.
In that second, we turned the page...and found a new beginning.
It wasn't easy from that moment on though. I had two wild children who weren't used to routine, schedules, and having to ask permission to do things. That summer was fairly rough as we all tried to figure out how to interact with each other.
I was still having my bottom packed with cotton twice a day but finally the fistulas were healing and the length of gauze was less than two inches. Another small victory, which filled me with hope that they would totally heal.
Slowly, ever so slowly I gained weight. But it about more than just packing on pounds. I had lost a massive amount of muscle mass and tone in my ligaments and tendons. It would take literally years for me to rebuild my strength and in fact, it would only be in the last year and a half once I started P90X that I would succeed at not only regaining what I had lost but going beyond that.
But even a better benefit to the exercise, besides feeling good about the way I looked, was the fact that it helped regulate my Crohn's. I couldn't believe it. Daily, sweaty, Tony Horton is nearly killing me exercise was helping in keeping my flares under control.
Our finances after the hospital were horrible. We owed over $85,000 in medical expenses and credit card bills that had been used to pay for living expenses. Bill collectors started calling, even after setting up payments because the payments weren't large enough.
Except I only had so much money and I had over a dozen and a half different doctors, clinics, and credit cards wanting a chunk of our limited funds. At first I would send something to them every month, but it wasn't enough for them. They started adding interest and fees to the amount.
Because adding more to the bills helps. When the hospital made it very clear they were going to put a lien on our house and take the money from us, we decided on bankruptcy.
It was a tough decision for us. We had always, always paid our bills on time, kept our debt limited and tried to do the right thing.
But we couldn't risk our house, not with two little girls. And having a lien of ten of thousands of dollars on it was scary. If we couldn't pay it, we would lose our house. Our children would lose their home and their only security.
We declared bankruptcy due to medical reasons.
In my head I rolled all this stuff into an image of the hospital and hated the place for it. But the hospital wasn't to blame.
And it would take Abu to point this out. When I was discussing how difficult it was to write these pieces and how much I hated the hospital, she stops what she is doing and looks at me with the most puzzled frown on her face.
"But Mom, it's where you got better."
To her, the hospital wasn't a terrible and horrible place. It was the place, that she can't hardly remember because she was only three at the time, but it was the place that her very sick Mommy went for two weeks...
And came back healed. Happy. Joyful. Able to be her Mommy.
It's about the only thing she remembers from that time period. Thank Goodness.
But to her it's the place where I got better.
She's right.
And now...I'm ready to deliver Baby Blueberry because it's also the place I'm going to have my beautiful, unexpected surprise.
It wouldn't take years to truly recover our relationship, but when we did it was better than before. It wouldn't take years to recover our lives and it wouldn't take years to heal emotionally from that tough time. But it did.
We watched a movie that afternoon. And if you can believe it, we watched Nanny McPhee. It was an odd choice but the only thing available.
And for once, I actually remembered the movie. In the nine months before the hospital, any time we watched a movie together, I was in so much pain and my brain was so foggy that I wouldn't recall much of the story at all. Even to this day, Hero Hottie will mention a movie we watched during that time and I can't remember it. It's a blank. A frustrating and ugly reminder of that time period.
The girls stayed with Grandma and Grandpa for a few more days until I was ready to have their busy in the house again.
It was the sweetest moment when they came home and their little arms wrapped around me. I closed my eyes, savoring their unique smell. Their little kid scent; freshly washed and then warmed in the summer sun.
Their eyes were wide as they studied me, especially Bean's since she was older. Her attention never wavered off me that day, following me around, watching for signs of me being sick, slow smiles creeping across her face as she realized things were better.
The next morning, when she got up; she hopped out of bed and went right for the kitchen. Just like the days before she was going to pour her own cereal; make her own meal. I was already up. What a victory. I was already out of bed and had the energy to take care of my children right from the start of morning.
It was such a simple thing...managing to get out of bed without feeling like I was going to black out...and it was such a blessing to start feeling normal. Mundane. Routine.
I stopped her in the kitchen and told her to sit down at the table. She frowned, sitting down, her intense focus on me, never wavering. Abu joined her, clutching her blanket but with grins on her face.
It was just cereal. But I got it out. I poured the milk. I set it on the table in front of my children.
Bean and Abu stared at me, spoons in their hands and for a moment- time was frozen as we all looked at each other. Mommy and daughters.
We had gone through a dark and hard journey together. Day in and day out, just struggling to hold it together.
And in that simple, sunny moment with just a normal bowl of cereal and a kitchen table; we all realized that we had made it through that journey.
That we could move on to the next chapter in our lives. A better chapter.
In that second, we turned the page...and found a new beginning.
It wasn't easy from that moment on though. I had two wild children who weren't used to routine, schedules, and having to ask permission to do things. That summer was fairly rough as we all tried to figure out how to interact with each other.
I was still having my bottom packed with cotton twice a day but finally the fistulas were healing and the length of gauze was less than two inches. Another small victory, which filled me with hope that they would totally heal.
Slowly, ever so slowly I gained weight. But it about more than just packing on pounds. I had lost a massive amount of muscle mass and tone in my ligaments and tendons. It would take literally years for me to rebuild my strength and in fact, it would only be in the last year and a half once I started P90X that I would succeed at not only regaining what I had lost but going beyond that.
But even a better benefit to the exercise, besides feeling good about the way I looked, was the fact that it helped regulate my Crohn's. I couldn't believe it. Daily, sweaty, Tony Horton is nearly killing me exercise was helping in keeping my flares under control.
Our finances after the hospital were horrible. We owed over $85,000 in medical expenses and credit card bills that had been used to pay for living expenses. Bill collectors started calling, even after setting up payments because the payments weren't large enough.
Except I only had so much money and I had over a dozen and a half different doctors, clinics, and credit cards wanting a chunk of our limited funds. At first I would send something to them every month, but it wasn't enough for them. They started adding interest and fees to the amount.
Because adding more to the bills helps. When the hospital made it very clear they were going to put a lien on our house and take the money from us, we decided on bankruptcy.
It was a tough decision for us. We had always, always paid our bills on time, kept our debt limited and tried to do the right thing.
But we couldn't risk our house, not with two little girls. And having a lien of ten of thousands of dollars on it was scary. If we couldn't pay it, we would lose our house. Our children would lose their home and their only security.
We declared bankruptcy due to medical reasons.
In my head I rolled all this stuff into an image of the hospital and hated the place for it. But the hospital wasn't to blame.
And it would take Abu to point this out. When I was discussing how difficult it was to write these pieces and how much I hated the hospital, she stops what she is doing and looks at me with the most puzzled frown on her face.
"But Mom, it's where you got better."
To her, the hospital wasn't a terrible and horrible place. It was the place, that she can't hardly remember because she was only three at the time, but it was the place that her very sick Mommy went for two weeks...
And came back healed. Happy. Joyful. Able to be her Mommy.
It's about the only thing she remembers from that time period. Thank Goodness.
But to her it's the place where I got better.
She's right.
And now...I'm ready to deliver Baby Blueberry because it's also the place I'm going to have my beautiful, unexpected surprise.
Thursday, August 23, 2012
The Hospital Stay
And now we're finally to the point of why I don't like hospitals. Of course, as I'm writing these blogs I realized something important...the hospital is just a place. It was the image in my head that I would see when I thought about that horrible time in my life. It become the icon for what happened. But my illness was a collection of events and procedures and dark days, well before I stayed at the hospital.
It's just when my brain filed it all away, so I wouldn't have to dwell on it; it slapped a label on it and the label said, "the hospital."
But my brain was wrong. I didn't realize that until just this very moment. I needed something to represent that time in my life and for what ever reason I picked the image of the hospital. And perhaps that's normal. Hospitals are not the prettiest buildings. Our hospital is eight or nine stories of hard, gray concrete, rising above all the other short and flat buildings around it. You can see it from quite a few places in our small town and it just seems imposing against the blue sky.
It's an unforgiving sort of structure and it doesn't ask to be anything it's not. It's not decorative, it's not relaxing; it's not soft.
It serves a purpose.
Which is to save people's lives.
The ER was a blur of more procedures, blood work, and lots of test. I had a great ER doctor whose job it is to fix people in emergency situations. And I was in crisis.
He took tons of blood and found that I was dangerously low on my iron. And when I mean dangerously low, I mean that. Much lower and it could have killed me.
I was given blood. Which is the weirdest thing ever. To watch someone else's blood drip into my veins. But I started to feel better right away. It was crazy.
I had a CT scan, in which I reacted violently to the contrast dye and started breaking out in huge welts and started having trouble breathing.
I was assigned a room, and I was even given a single bed. Which, without insurance, doesn't happen often, but someone was watching out for me and the doctor decided that I needed my own bathroom and the privacy to use it. I could have cried with gratitude.
I had lost so much weight I had a line inserted into a major vein inside my arm, that traveled up my arm, across my shoulder and dropped down to my heart. If I twisted my arm wrong I could actually cut off the line. They used this central line to give me a liquid diet since the doctor decided I shouldn't digest anything for the next nine days or so.
I had a long list of tests to check on the condition of my intestine, which surprisingly was not in horrible shape. A different GI doctor, the specialist in Crohn's, tried to convince me to have most of it removed anyway and live with a bag for the rest of my life.
I looked at the photos. It was an unhappy intestine; swollen and sore but I wasn't bleeding and I didn't have dead areas.
My surgeon was shocked that he wanted me to go under the knife in the state of health I was in. He didn't say anything unprofessional about the other doctor but basically to para phase it he did say what the hell was this guy thinking because in my condition, having surgery would probably kill me.
I declined surgery and told the GI doctor that I rather try medication first before we talked about removing a major organ.
He frowned and a few hours later he prescribed aspirin and blood thinners for me to take.
I looked at the nurse, refusing the medication.
"Why do I need these? The GI doctor says I'm bleeding so much in my gut he wants to remove it. Won't this make it worse?"
She freezes, the pills and syringe in her hand. "Well, he doesn't want you to get a blood clot since you're so immobile."
I frowned, shaking my head. "No. I don't think this is a good idea. He says I'm bleeding in my gut and he wants to give me something that might make me bleed even more. Does he want me to lose my intestine?"
Her lips purse together, her eyes narrowing as she thought about the situation. "I'm going to call the doctor."
She didn't try to bring the medications back. But to this day I wonder...and I hate to think this...but was he just not thinking about what could have happened if I took blood thinners when supposedly I was bleeding profusely...
or did he want me to bleed more so I would consent to the surgery?
I was lonely in the hospital. My parents had the girls and Hero Hottie had to work. He came in the evenings to see me. A few nights he spent the night with me when he could. We barely talked. Our marriage was nonexistence.
But we still hung on.
I started watching the Food Network. I know...I'm crazy. I wasn't allowed to eat any food...of any sort and here I was watching hours and hours of cooking. I was torturing myself with the one thing I couldn't have. But it kept me from going insane.
I asked for my laptop. The first time in months I felt like writing. And wrote I did. Suddenly, I knew how to write.
I realized I wasn't writing before. I was putting words on paper but I wasn't revealing emotions. I wasn't finding the nitty gritty.
The clarity of what I needed to do to succeed at my writing was amazing. It wasn't about writing what I know...it was about writing about what I feel.
I had to share myself if I wanted to succeed.
The good, the bad, the ugly. The stuff that I thought made me less than perfect. The mistakes, the negative, the genuine Me.
Not the one I tried so desperately hard to live up to. And failed at.
I didn't have to be perfect anymore. For anyone. And in realizing that; my writing improved in ways I had despaired it ever would.
In almost dying, I started to realize how to live.
Some days I was so lonely though, I would stare down at the world below, like a princess locked in her tower and watch spring turn into summer. Abu, who had been extremely quiet for a three year old, suddenly showed up at the hospital, talking and chattering nonstop about everything.
Light glinted in the girls' eyes now. A cloud had been lifted, a spell had been broken and there was hope again.
I longed for their visits and their phone calls. It was the bright spots in my days. They were the reason I hadn't given up. I missed them so much it made my chest burn.
And I was determined to get back to them.
I talked and talked to all the GI doctors and finally find one out of that small group that was willing to work with me and find me a drug that didn't have worse side effects than the Crohn's.
I talked to another GI doctor who was shocked that I had been put on the Ultram to begin with. In her experience, someone with digestive problem should never, ever be prescribed that drug and in fact, one of the side effects of it was clinical anorexia.
Weight loss. Massive weight loss.
Uncontrollable weight loss.
It wasn't my Crohn's killing me. It had been the Ultram. All this time.
By day eleven I was tentatively ready to go home. I had been eating solid food for three days and my bowels were doing okay with it. They had started digesting again; a good sign. I had put on five pounds from my liquid diet, which was fair but enough to try sending me home.
My iron levels were good, thanks to someone's kindness in donating blood.
I was worried about leaving the safety of the hospital. I was afraid to go home. All that want and need to be at home and I was afraid.
Fearful that I would get sick again. That I would die anyway. That I would start to get sick again as soon as I left the hospital.
But my new GI doctor reassured me that if anything went wrong; I wouldn't have to wait for an appointment. They would see me. At the first sign of any trouble.
Hero Hottie picked me up and took me home to a quiet house. The kids would stay with my parents for a few more days until I was ready to take care of them.
It was strange walking into my own house. For so long it had been a prison of pain, grief and despair.
Summer had happened while I was in the hospital and sunlight filled the rooms. Bright and inviting and promising something good.
I felt like a stranger at first, unsure and hesitant. Who was I?
I wasn't the same person who had left this house eleven days earlier.
It would take years to realize just how much change had happened to me. But in the meantime...
I folded a load of laundry, simply because I had the strength to do so.
It's just when my brain filed it all away, so I wouldn't have to dwell on it; it slapped a label on it and the label said, "the hospital."
But my brain was wrong. I didn't realize that until just this very moment. I needed something to represent that time in my life and for what ever reason I picked the image of the hospital. And perhaps that's normal. Hospitals are not the prettiest buildings. Our hospital is eight or nine stories of hard, gray concrete, rising above all the other short and flat buildings around it. You can see it from quite a few places in our small town and it just seems imposing against the blue sky.
It's an unforgiving sort of structure and it doesn't ask to be anything it's not. It's not decorative, it's not relaxing; it's not soft.
It serves a purpose.
Which is to save people's lives.
The ER was a blur of more procedures, blood work, and lots of test. I had a great ER doctor whose job it is to fix people in emergency situations. And I was in crisis.
He took tons of blood and found that I was dangerously low on my iron. And when I mean dangerously low, I mean that. Much lower and it could have killed me.
I was given blood. Which is the weirdest thing ever. To watch someone else's blood drip into my veins. But I started to feel better right away. It was crazy.
I had a CT scan, in which I reacted violently to the contrast dye and started breaking out in huge welts and started having trouble breathing.
I was assigned a room, and I was even given a single bed. Which, without insurance, doesn't happen often, but someone was watching out for me and the doctor decided that I needed my own bathroom and the privacy to use it. I could have cried with gratitude.
I had lost so much weight I had a line inserted into a major vein inside my arm, that traveled up my arm, across my shoulder and dropped down to my heart. If I twisted my arm wrong I could actually cut off the line. They used this central line to give me a liquid diet since the doctor decided I shouldn't digest anything for the next nine days or so.
I had a long list of tests to check on the condition of my intestine, which surprisingly was not in horrible shape. A different GI doctor, the specialist in Crohn's, tried to convince me to have most of it removed anyway and live with a bag for the rest of my life.
I looked at the photos. It was an unhappy intestine; swollen and sore but I wasn't bleeding and I didn't have dead areas.
My surgeon was shocked that he wanted me to go under the knife in the state of health I was in. He didn't say anything unprofessional about the other doctor but basically to para phase it he did say what the hell was this guy thinking because in my condition, having surgery would probably kill me.
I declined surgery and told the GI doctor that I rather try medication first before we talked about removing a major organ.
He frowned and a few hours later he prescribed aspirin and blood thinners for me to take.
I looked at the nurse, refusing the medication.
"Why do I need these? The GI doctor says I'm bleeding so much in my gut he wants to remove it. Won't this make it worse?"
She freezes, the pills and syringe in her hand. "Well, he doesn't want you to get a blood clot since you're so immobile."
I frowned, shaking my head. "No. I don't think this is a good idea. He says I'm bleeding in my gut and he wants to give me something that might make me bleed even more. Does he want me to lose my intestine?"
Her lips purse together, her eyes narrowing as she thought about the situation. "I'm going to call the doctor."
She didn't try to bring the medications back. But to this day I wonder...and I hate to think this...but was he just not thinking about what could have happened if I took blood thinners when supposedly I was bleeding profusely...
or did he want me to bleed more so I would consent to the surgery?
I was lonely in the hospital. My parents had the girls and Hero Hottie had to work. He came in the evenings to see me. A few nights he spent the night with me when he could. We barely talked. Our marriage was nonexistence.
But we still hung on.
I started watching the Food Network. I know...I'm crazy. I wasn't allowed to eat any food...of any sort and here I was watching hours and hours of cooking. I was torturing myself with the one thing I couldn't have. But it kept me from going insane.
I asked for my laptop. The first time in months I felt like writing. And wrote I did. Suddenly, I knew how to write.
I realized I wasn't writing before. I was putting words on paper but I wasn't revealing emotions. I wasn't finding the nitty gritty.
The clarity of what I needed to do to succeed at my writing was amazing. It wasn't about writing what I know...it was about writing about what I feel.
I had to share myself if I wanted to succeed.
The good, the bad, the ugly. The stuff that I thought made me less than perfect. The mistakes, the negative, the genuine Me.
Not the one I tried so desperately hard to live up to. And failed at.
I didn't have to be perfect anymore. For anyone. And in realizing that; my writing improved in ways I had despaired it ever would.
In almost dying, I started to realize how to live.
Some days I was so lonely though, I would stare down at the world below, like a princess locked in her tower and watch spring turn into summer. Abu, who had been extremely quiet for a three year old, suddenly showed up at the hospital, talking and chattering nonstop about everything.
Light glinted in the girls' eyes now. A cloud had been lifted, a spell had been broken and there was hope again.
I longed for their visits and their phone calls. It was the bright spots in my days. They were the reason I hadn't given up. I missed them so much it made my chest burn.
And I was determined to get back to them.
I talked and talked to all the GI doctors and finally find one out of that small group that was willing to work with me and find me a drug that didn't have worse side effects than the Crohn's.
I talked to another GI doctor who was shocked that I had been put on the Ultram to begin with. In her experience, someone with digestive problem should never, ever be prescribed that drug and in fact, one of the side effects of it was clinical anorexia.
Weight loss. Massive weight loss.
Uncontrollable weight loss.
It wasn't my Crohn's killing me. It had been the Ultram. All this time.
By day eleven I was tentatively ready to go home. I had been eating solid food for three days and my bowels were doing okay with it. They had started digesting again; a good sign. I had put on five pounds from my liquid diet, which was fair but enough to try sending me home.
My iron levels were good, thanks to someone's kindness in donating blood.
I was worried about leaving the safety of the hospital. I was afraid to go home. All that want and need to be at home and I was afraid.
Fearful that I would get sick again. That I would die anyway. That I would start to get sick again as soon as I left the hospital.
But my new GI doctor reassured me that if anything went wrong; I wouldn't have to wait for an appointment. They would see me. At the first sign of any trouble.
Hero Hottie picked me up and took me home to a quiet house. The kids would stay with my parents for a few more days until I was ready to take care of them.
It was strange walking into my own house. For so long it had been a prison of pain, grief and despair.
Summer had happened while I was in the hospital and sunlight filled the rooms. Bright and inviting and promising something good.
I felt like a stranger at first, unsure and hesitant. Who was I?
I wasn't the same person who had left this house eleven days earlier.
It would take years to realize just how much change had happened to me. But in the meantime...
I folded a load of laundry, simply because I had the strength to do so.
Wednesday, August 22, 2012
Life in Blurs of Moments
The next nine months would prove the hardest and darkest of my life. And I don't remember most of it. It's all jumbled in my head as bits and pieces. Brief moments of life in between everything else.
My life was the in between. I wasn't dead but I wasn't living.
I was dying.
And I didn't even realize it until it was almost too late.
The first two months after the second surgery I was once again put on the narcotics for the pain because they worked better. And I started healing again. I had hope...briefly.
And then I went back on the Ultram. And things rapidly went back downhill. We still celebrated holidays that season but I hardly remember them.
The photos show a very thin me, smiling into the camera because it was Bean or Abu taking the photo and I was trying desperately to ignore the pain so I could have time with my kids. Hero Hottie looked like he could collapse if someone pushed him over. We were a mess as a family and trying to hold it together as best as we could.
But we were broken...emotionally.
By spring I was losing a few pounds a week even though I was forcing food down my throat. I wasn't digesting it though. By this point I started to suspect the Ultram. It was the only common factor in all this. I would start healing until I was put on it and then I would get worse.
I went off the Ultram.
My mood improved. The dark thoughts left, which helped me realize that I needed to do something to survive. But by that point that was about as much thinking as I could handle. I couldn't make a plan, I couldn't rise above the pain. My brain, probably from slowly starving to death, was incapable of making decisions.
I started blacking out in random locations inside the house. The blackness would descend on me, I would feel myself hit the floor and wake up minutes later, confused and in pain.
One time I collapsed in the kitchen in front of the girls and woke to find myself sobbing uncontrollably and their little faces just inches from mine, as they tried to shake me awake.
I tried to reassure them that I was okay. I just fell.
They didn't believe me. That's okay. I didn't believe me either.
Later, I would learn that my iron levels were so freaking low; they were part of the reason for passing out.
Now, at this point, I'm sure you're going to ask why the hell I didn't go back to the doctor. Well, I did and didn't. The surgeon was a great surgeon but he couldn't help me with my problems. I had check ups for my bottom, which still hadn't healed by this point but all he could say was I needed to go back to my other doctor.
My GI doctor just wanted to put me on Remicade and literally told me he wouldn't do anything else for me. But I knew that wasn't the answer. I knew my body enough to know that what was going on was more than just the Crohn's. It had to be the Ultram.
But I couldn't get the doctor to listen to me.
And unfortunately in my town, there is one GI clinic. One set of doctors with all the same procedures to deal with GI problems. My choices were limited. Severely.
By the end of May, no matter what I did or ate, I was still losing pounds by the week. I couldn't get my system to work. The only thing that seemed to help ease the stomach pains and cramping was a special herbal tea made with four herbs not picked for their taste but for their healing abilities. But I think so much damage was already done to my intestine by this point that it wasn't enough.
I would have to go back to the GI doctor and try to figure out something.
So I called and explained everything. The next appointment was a few weeks out with the Remicade doctor. Did I have a choice?
I asked if I could see any other doctor. Please. I was desperate. There had to be a doctor...somewhere...that had an answer for me.
"Well, if you want to see a different doctor, than you have to wait two months. But I have an appointment in July."
I sat on the edge of the bed, in my pajama bottoms and numbly told them I would call them back. I didn't know what to do. And I'm sure part of my indecision was that fact that my brain was not functioning all that well. The Ultram had messed with it, the lack of iron made it difficult to concentrate, and the lack of nutrients that my system was not absorbing was playing havoc with my mental abilities.
I made the appointment but Hero Hottie started dreaming that he kept seeing me in my coffin and he had to bury me, leaving him alone to raise our two girls. It was the only thing that made sense to me in my fuddled state. I knew I was going to die unless I did something. And I couldn't leave him. I couldn't leave our girls without their Mommy.
Bean and Abu had their birthday party with all my family on the same day. I laid on the couch, managed to watch them open their gifts and then collapsed onto the bed and listened to their happy voices celebrate their birthday without me, while I cried and stared at the ceiling. Please, God. Don't let them lose their Mommy.
On June 6th, 2006 I waited for Hero Hottie to get home from work. If the GI clinic couldn't fit me in any sooner than July than I would just have to go to the ER. I had ran out of choices and time.
At this point all I could think about was his dream of me dead. And I could feel it on the inside. I was dying.
They weighed me at the hospital. I was just 93 pounds. My usual is 135 but I had been a bit overweight at 165 when I started getting sick. I had lost over seventy pounds.
I didn't realize that it would be eleven days before I would set foot outside the hospital again.
My life was the in between. I wasn't dead but I wasn't living.
I was dying.
And I didn't even realize it until it was almost too late.
The first two months after the second surgery I was once again put on the narcotics for the pain because they worked better. And I started healing again. I had hope...briefly.
And then I went back on the Ultram. And things rapidly went back downhill. We still celebrated holidays that season but I hardly remember them.
The photos show a very thin me, smiling into the camera because it was Bean or Abu taking the photo and I was trying desperately to ignore the pain so I could have time with my kids. Hero Hottie looked like he could collapse if someone pushed him over. We were a mess as a family and trying to hold it together as best as we could.
But we were broken...emotionally.
By spring I was losing a few pounds a week even though I was forcing food down my throat. I wasn't digesting it though. By this point I started to suspect the Ultram. It was the only common factor in all this. I would start healing until I was put on it and then I would get worse.
I went off the Ultram.
My mood improved. The dark thoughts left, which helped me realize that I needed to do something to survive. But by that point that was about as much thinking as I could handle. I couldn't make a plan, I couldn't rise above the pain. My brain, probably from slowly starving to death, was incapable of making decisions.
I started blacking out in random locations inside the house. The blackness would descend on me, I would feel myself hit the floor and wake up minutes later, confused and in pain.
One time I collapsed in the kitchen in front of the girls and woke to find myself sobbing uncontrollably and their little faces just inches from mine, as they tried to shake me awake.
I tried to reassure them that I was okay. I just fell.
They didn't believe me. That's okay. I didn't believe me either.
Later, I would learn that my iron levels were so freaking low; they were part of the reason for passing out.
Now, at this point, I'm sure you're going to ask why the hell I didn't go back to the doctor. Well, I did and didn't. The surgeon was a great surgeon but he couldn't help me with my problems. I had check ups for my bottom, which still hadn't healed by this point but all he could say was I needed to go back to my other doctor.
My GI doctor just wanted to put me on Remicade and literally told me he wouldn't do anything else for me. But I knew that wasn't the answer. I knew my body enough to know that what was going on was more than just the Crohn's. It had to be the Ultram.
But I couldn't get the doctor to listen to me.
And unfortunately in my town, there is one GI clinic. One set of doctors with all the same procedures to deal with GI problems. My choices were limited. Severely.
By the end of May, no matter what I did or ate, I was still losing pounds by the week. I couldn't get my system to work. The only thing that seemed to help ease the stomach pains and cramping was a special herbal tea made with four herbs not picked for their taste but for their healing abilities. But I think so much damage was already done to my intestine by this point that it wasn't enough.
I would have to go back to the GI doctor and try to figure out something.
So I called and explained everything. The next appointment was a few weeks out with the Remicade doctor. Did I have a choice?
I asked if I could see any other doctor. Please. I was desperate. There had to be a doctor...somewhere...that had an answer for me.
"Well, if you want to see a different doctor, than you have to wait two months. But I have an appointment in July."
I sat on the edge of the bed, in my pajama bottoms and numbly told them I would call them back. I didn't know what to do. And I'm sure part of my indecision was that fact that my brain was not functioning all that well. The Ultram had messed with it, the lack of iron made it difficult to concentrate, and the lack of nutrients that my system was not absorbing was playing havoc with my mental abilities.
I made the appointment but Hero Hottie started dreaming that he kept seeing me in my coffin and he had to bury me, leaving him alone to raise our two girls. It was the only thing that made sense to me in my fuddled state. I knew I was going to die unless I did something. And I couldn't leave him. I couldn't leave our girls without their Mommy.
Bean and Abu had their birthday party with all my family on the same day. I laid on the couch, managed to watch them open their gifts and then collapsed onto the bed and listened to their happy voices celebrate their birthday without me, while I cried and stared at the ceiling. Please, God. Don't let them lose their Mommy.
On June 6th, 2006 I waited for Hero Hottie to get home from work. If the GI clinic couldn't fit me in any sooner than July than I would just have to go to the ER. I had ran out of choices and time.
At this point all I could think about was his dream of me dead. And I could feel it on the inside. I was dying.
They weighed me at the hospital. I was just 93 pounds. My usual is 135 but I had been a bit overweight at 165 when I started getting sick. I had lost over seventy pounds.
I didn't realize that it would be eleven days before I would set foot outside the hospital again.
Tuesday, August 21, 2012
Another Fistula, another surgery, a downward descent
By that Fall something was obviously wrong in my other bottom cheek. And I feared it was another mass of infection. The other wound still had not healed and I was faced with the possibility that I would have to undergo yet another surgery.
My surgeon, bless his heart, didn't want to just jump in and rip me open if we could avoid it. He knew I was not healing well from the first one. So I had a MRI, which showed a mass of something but didn't tell him much except there was infection.
He decided I should have a drainage procedure and see if I could avoid the knife.
I went to the hospital and the nurses explained what would happen. I would be given a twilight sleep. I wouldn't be totally put out but hopefully enough that I didn't feel much of anything. The doctor would ultrasound the area while sticking a huge ass needle into my well...my ass and drain the mass.
I undressed and put on the over sided, snaps missing on part of the sleeves- gown and tried to keep as modest and decent as possible. What was the point; I'm not sure since this crowd of medical professions would be not only seeing my entire bottom, but touching it and messing with it and robbing me of any shred of personal space I had left.
I was managing okay, tightly holding onto Hero Hottie's hand, trying to absorb his strength as he stood next to the bed I was sitting on.
And then the nurse frowned as she spoke.
Hero Hottie would not be allowed in the room during the procedure.
"What?" I asked, wanting to cry. I needed him with me. At this point in my illness, even though we were barely a couple in any sense of the word, he was the only person who was keeping me from losing it every time I went to the hospital for tests, or blood work, or MRI's. I needed him to hold my hand through this.
"I'm sorry. He can't be in here. But I'll be here with you the whole time." She was nice and kindly but she wasn't Hero Hottie.
I tried to argue and had it been the 'Me of Now', than he would have remained in the room or I would have walked out. But the 'Me of Then' was still timid and prone to obey doctors because they obviously know best. Right?
I took a deep, shuddering breath and blinked back the tears as he left the room. I was surrounded by strangers and strange beeping machines. It was a bit chilly in the room. I had an IV put in, prepping me for the twilight medicine. And I was completely alone.
The nurses and there was four or five of them were busy laying out tools; sharp, pointy tools; and long syringes. They were bustling around, like they weren't even aware that I was in the room but I was the whole point they were there.
I felt like that part in the movie, where the girl is standing in the middle of a busy scene and the camera has focused in on her while the people moving around her are just a blur.
The doctor came in. Introduced himself, explained the procedure and started fiddling with his ultrasound machine.
The nurse helped me lay on my stomach and slowly injected the twilight sleep into my IV.
But it didn't work as well as they assumed it would. I was still breathing and awake; I just couldn't move any part of my body and I wasn't coherent enough to verbalize but I was still conscious-ish. I felt the coldness of the ultrasound wand start to move up and down the lump, causing pain as he pressed it into the skin, trying to find the right location for the syringe.
I started crying; that I could do.
Then he plunged the syringe into me.
I screamed. The sound echoed in my ears, roaring through my body, vibrating my head. I tried to speak. Tried to voice my thoughts. The twilight sleep wasn't working. The pain was hellish and I could feel every single part of it.
I was trapped inside my own body, unable to escape what was going on.
And he just kept taking the syringe out and plunging it back in. Time and time again.
Every time I screamed.
At first I started to question if the screams were even leaving my lips, or if they too were trapped inside me, since no one would stop the procedure. Surely, they would stop if I was in so much pain. Wouldn't they?
But then I realized, as the nurses around me moved faster, and their voices started to argue with each other...As someone injected my IV with more and more twilight sleep, under the doctor's orders... I realized my screams were very real. And they filled the room.
Loudly. Uncontrollably. In ways I never even cried out during the last hard pushes of childbirth.
A nurse grabbed my hand. It was warm and welcoming and for a second I could calm down, focused on the human contact. Trying to stay focus on that space where our hands connected, forming a bond of support and caring.
And then he plunged the syringe in again.
I screamed with something that seem to rise from the depths of my being, the horrible sound filling the room and then the harsh voice of the doctor as he demanded the nurses to do something. I felt the hot or cold, I'm not sure of the temperature, of liquid being injected into my IV. I could feel it seep into my veins and then blackness took over.
The next thing I knew I was weeping and unable to form a coherent thought in my brain. A bright light glared at me from the ceiling and Hero Hottie was next to the bed. A nurse was talking to me. Over and over again. She wouldn't stop talking. She wouldn't leave me alone.
Just kept calling my name. Talking to me.
I stared at the nurse and Hero Hottie. My brain wouldn't work. It was foggy.
The nurse gave me something to drink. Juice, I think.
"Here, honey. Drink this."
What? Drink what? I almost didn't even know what the word 'drink' meant.
She kept talking. Taking my blood pressure. Coaxing me to respond. Demanding me to keep my eyes open.
Where the hell was I? Who was I?
Why did she keep jabbering at me?
Finally a breeze blew through my brain. I blinked, staring at Hero Hottie. It was like waking up from a nightmare. My heart felt funny. My thoughts tumbled together like a puzzle shaken inside its box.
But I was beginning to remember everything.
Hell. In a hospital room. Pain.
What the hell had happened?
"Are you okay?" the nurse asked, staring at me. "You had me a bit worried."
I nodded slowly. Hero Hottie looked pale.
Then the nurse frowned. "They didn't do that right. They should never have given you so much twilight sleep. Your blood pressure was...dangerously low." She muttered a few more things about everything that had gone wrong with the procedure. How the doctor had ordered way too much drug, that it wasn't proper procedure, that he should have stopped when I was freaking out. That he couldn't even find the right spot in my bottom and just kept digging around with the syringe hoping to find it.
Apparently, the procedure had not gone as planned. The twilight sleep had not worked on the pain and the doctor just kept ordering more and more until I passed out. Then my blood pressure had dropped dangerously low. It could have been a disaster.
When I was able to get dressed and my blood pressure finally returned to normal, Hero Hottie helped me to the car. I was shaky from the ordeal. Emotionally devastated by the procedure.
Not only had it felt like I had been tortured and unable to defend myself. I had been almost killed by a doctor not following proper hospital procedures on the usage of the drug.
When the bill came from the doctor, almost $1500, I stared at it and started crying. I had to pay for what happened to me?
No. And I felt a bit of my old spark and fire in me. Just a bit. I would not pay for what happened. So I sat down and wrote.
I wrote a nice, long letter about how I was treated, about how I was still somewhat conscious and screaming bloody murder and the doctor didn't stop. I wrote how he ordered more and more twilight sleep until it was too much and he caused my blood pressure to drop dangerously low.
I wrote how it took forever for me to return to the land of the living and how worried the nurse had been.
I threw in some legalise, questioning if he wasn't following hospital procedure than how liable he might be for everything that went wrong. How he could have killed me. I hinted that perhaps his actions bordered on malpractice.
I wrote simply the truth of what had happened and asked why I needed to pay the bill for this.
Two weeks later I received a cleverly worded document that didn't admit to anything or could be mistaken as such if I should take it to a legal professional but said I was no longer responsible for this bill and don't worry about it.
That actually made me mad. Because it confirmed everything. Doctors don't just erase bills. To me, it means he was in the wrong and he could have killed me.
He also never drained the infection. I don't know why he couldn't find it; I could trace the entire, huge lump under the skin with my fingers but even with an ultrasound machine he failed to make contact with it.
Soon after that, I went back into surgery and woke up with a huge section of my bottom gone and another wound that would need packed twice a day with gauze. That would make two different wounds needing cleaned and packed with cotton gauze twice a day. The second wound was even larger than the first one and needed even more gauze than the first one originally needed.
My surgeon, bless his heart, didn't want to just jump in and rip me open if we could avoid it. He knew I was not healing well from the first one. So I had a MRI, which showed a mass of something but didn't tell him much except there was infection.
He decided I should have a drainage procedure and see if I could avoid the knife.
I went to the hospital and the nurses explained what would happen. I would be given a twilight sleep. I wouldn't be totally put out but hopefully enough that I didn't feel much of anything. The doctor would ultrasound the area while sticking a huge ass needle into my well...my ass and drain the mass.
I undressed and put on the over sided, snaps missing on part of the sleeves- gown and tried to keep as modest and decent as possible. What was the point; I'm not sure since this crowd of medical professions would be not only seeing my entire bottom, but touching it and messing with it and robbing me of any shred of personal space I had left.
I was managing okay, tightly holding onto Hero Hottie's hand, trying to absorb his strength as he stood next to the bed I was sitting on.
And then the nurse frowned as she spoke.
Hero Hottie would not be allowed in the room during the procedure.
"What?" I asked, wanting to cry. I needed him with me. At this point in my illness, even though we were barely a couple in any sense of the word, he was the only person who was keeping me from losing it every time I went to the hospital for tests, or blood work, or MRI's. I needed him to hold my hand through this.
"I'm sorry. He can't be in here. But I'll be here with you the whole time." She was nice and kindly but she wasn't Hero Hottie.
I tried to argue and had it been the 'Me of Now', than he would have remained in the room or I would have walked out. But the 'Me of Then' was still timid and prone to obey doctors because they obviously know best. Right?
I took a deep, shuddering breath and blinked back the tears as he left the room. I was surrounded by strangers and strange beeping machines. It was a bit chilly in the room. I had an IV put in, prepping me for the twilight medicine. And I was completely alone.
The nurses and there was four or five of them were busy laying out tools; sharp, pointy tools; and long syringes. They were bustling around, like they weren't even aware that I was in the room but I was the whole point they were there.
I felt like that part in the movie, where the girl is standing in the middle of a busy scene and the camera has focused in on her while the people moving around her are just a blur.
The doctor came in. Introduced himself, explained the procedure and started fiddling with his ultrasound machine.
The nurse helped me lay on my stomach and slowly injected the twilight sleep into my IV.
But it didn't work as well as they assumed it would. I was still breathing and awake; I just couldn't move any part of my body and I wasn't coherent enough to verbalize but I was still conscious-ish. I felt the coldness of the ultrasound wand start to move up and down the lump, causing pain as he pressed it into the skin, trying to find the right location for the syringe.
I started crying; that I could do.
Then he plunged the syringe into me.
I screamed. The sound echoed in my ears, roaring through my body, vibrating my head. I tried to speak. Tried to voice my thoughts. The twilight sleep wasn't working. The pain was hellish and I could feel every single part of it.
I was trapped inside my own body, unable to escape what was going on.
And he just kept taking the syringe out and plunging it back in. Time and time again.
Every time I screamed.
At first I started to question if the screams were even leaving my lips, or if they too were trapped inside me, since no one would stop the procedure. Surely, they would stop if I was in so much pain. Wouldn't they?
But then I realized, as the nurses around me moved faster, and their voices started to argue with each other...As someone injected my IV with more and more twilight sleep, under the doctor's orders... I realized my screams were very real. And they filled the room.
Loudly. Uncontrollably. In ways I never even cried out during the last hard pushes of childbirth.
A nurse grabbed my hand. It was warm and welcoming and for a second I could calm down, focused on the human contact. Trying to stay focus on that space where our hands connected, forming a bond of support and caring.
And then he plunged the syringe in again.
I screamed with something that seem to rise from the depths of my being, the horrible sound filling the room and then the harsh voice of the doctor as he demanded the nurses to do something. I felt the hot or cold, I'm not sure of the temperature, of liquid being injected into my IV. I could feel it seep into my veins and then blackness took over.
The next thing I knew I was weeping and unable to form a coherent thought in my brain. A bright light glared at me from the ceiling and Hero Hottie was next to the bed. A nurse was talking to me. Over and over again. She wouldn't stop talking. She wouldn't leave me alone.
Just kept calling my name. Talking to me.
I stared at the nurse and Hero Hottie. My brain wouldn't work. It was foggy.
The nurse gave me something to drink. Juice, I think.
"Here, honey. Drink this."
What? Drink what? I almost didn't even know what the word 'drink' meant.
She kept talking. Taking my blood pressure. Coaxing me to respond. Demanding me to keep my eyes open.
Where the hell was I? Who was I?
Why did she keep jabbering at me?
Finally a breeze blew through my brain. I blinked, staring at Hero Hottie. It was like waking up from a nightmare. My heart felt funny. My thoughts tumbled together like a puzzle shaken inside its box.
But I was beginning to remember everything.
Hell. In a hospital room. Pain.
What the hell had happened?
"Are you okay?" the nurse asked, staring at me. "You had me a bit worried."
I nodded slowly. Hero Hottie looked pale.
Then the nurse frowned. "They didn't do that right. They should never have given you so much twilight sleep. Your blood pressure was...dangerously low." She muttered a few more things about everything that had gone wrong with the procedure. How the doctor had ordered way too much drug, that it wasn't proper procedure, that he should have stopped when I was freaking out. That he couldn't even find the right spot in my bottom and just kept digging around with the syringe hoping to find it.
Apparently, the procedure had not gone as planned. The twilight sleep had not worked on the pain and the doctor just kept ordering more and more until I passed out. Then my blood pressure had dropped dangerously low. It could have been a disaster.
When I was able to get dressed and my blood pressure finally returned to normal, Hero Hottie helped me to the car. I was shaky from the ordeal. Emotionally devastated by the procedure.
Not only had it felt like I had been tortured and unable to defend myself. I had been almost killed by a doctor not following proper hospital procedures on the usage of the drug.
When the bill came from the doctor, almost $1500, I stared at it and started crying. I had to pay for what happened to me?
No. And I felt a bit of my old spark and fire in me. Just a bit. I would not pay for what happened. So I sat down and wrote.
I wrote a nice, long letter about how I was treated, about how I was still somewhat conscious and screaming bloody murder and the doctor didn't stop. I wrote how he ordered more and more twilight sleep until it was too much and he caused my blood pressure to drop dangerously low.
I wrote how it took forever for me to return to the land of the living and how worried the nurse had been.
I threw in some legalise, questioning if he wasn't following hospital procedure than how liable he might be for everything that went wrong. How he could have killed me. I hinted that perhaps his actions bordered on malpractice.
I wrote simply the truth of what had happened and asked why I needed to pay the bill for this.
Two weeks later I received a cleverly worded document that didn't admit to anything or could be mistaken as such if I should take it to a legal professional but said I was no longer responsible for this bill and don't worry about it.
That actually made me mad. Because it confirmed everything. Doctors don't just erase bills. To me, it means he was in the wrong and he could have killed me.
He also never drained the infection. I don't know why he couldn't find it; I could trace the entire, huge lump under the skin with my fingers but even with an ultrasound machine he failed to make contact with it.
Soon after that, I went back into surgery and woke up with a huge section of my bottom gone and another wound that would need packed twice a day with gauze. That would make two different wounds needing cleaned and packed with cotton gauze twice a day. The second wound was even larger than the first one and needed even more gauze than the first one originally needed.
Monday, August 20, 2012
Unspoken Dangers
I'm not too terribly fond of statistics. I think most are misrepresented in some shape or form. Either they are calculated by the company who obviously wants them to say something a certain way; or an important bit of information is left out.
It's like making apple pie without listing apples on the recipe. You almost have a pie of some sort and some people might eat a brown sugar and crust pie but you're missing the main idea.
Taking prescriptions is a lot like that. We assume they're safe because the FDA told us so and they have their 'studies' and statistics to prove it. That doctor surely would research what he's giving us before he signs his name on that prescription and obviously these drugs are suppose to cure us. Why question that?
But if you start to research statistics on deaths and serious injuries from using prescription drugs; and I'm talking about more than just teenagers raiding their parents' medicine cabinet for a quick fix. I'm talking about taking a drug as prescribed by the doctor than you will find that your chances of dying or being seriously wounded are quite high.
In some causes, high enough that we have to wonder why we just blindly pop these pills the doctors hand us and assume that they will make us better and not worse. Should we start to demand a little bit more research; a little bit more effort on our government's part to assure our safety?
Yes. We should. Because some reports state that over a 100,000 people die a year from taking prescriptions or OTC medications.
So either the numbers from the actual FDA's Adverse Event Reporting System are wrong. Or the info packets they hand out with our drugs where it says a 'very, rare and small portion of the population may die a sudden and violent death from taking our product' are wrong. Oh, wait they don't even say that do they? Umm, someone is wrong.
But let me explain where my doubts of our medicine system really started....
First it was the doctor insisting that I could take the Remicade even though it would up my risk of cancer. I started to have doubts then. Why trade one disease for another?
Then when my surgeon took me off the narcotics and prescribed me Ultram.
And that's when my life nose dived downhill. I was slowly starting to get better before that point. The wound was healing, the pain was marginally better and the Crohn's was slowly fading back into it's remission state.
And then I took the Ultram. Now, usually I avoid most drugs. They upset my Crohn's and a temporary ache or pain or cold is much more tolerable to deal with than the stomach pains the Crohn's can cause.
But with the Ultram I had nothing. No upset stomach, no cramping, no unsightly bowel movements. So I figured it must have been okay.
It helped with the pain enough. It wasn't quite as good as the narcotic but it was sufficient. But then over the next few weeks my health weakened. The fistula wound was trying to get more infected again. Another lump of something painful formed under the other bottom cheek. And I was losing weight, despite eating.
The girls were quickly losing their Mommy and Bean took to raiding the cupboards whenever she wanted. Not because I wasn't feeding them. I would still drag myself from the bed, get their meals, give Abu her shots and collapse onto the couch. It was pitiful. I felt horrible.
The wound in my bottom forced me to wear pajama bottoms all the time. Jeans would rub against it. So I felt horribly undressed. I would clean up for the day; but nothing more. There was no pride in myself.
I was depressed and dark and wounded. Later I would find out that Ultram messes with your emotions; causing changes in your mood. Would have been nice to know sooner.
The girls did what they wanted. We didn't have structure or routine. I interfered when they would fight but if they weren't destroying something or hurting themselves; than I allowed them to do pretty much whatever. The house was always a mess; toys ran from one room to the next in huge piles. Their room was cluttered.
I managed to do the dishes sometimes; my Mom would do the rest. Hero Hottie took care of the trash, and the shopping, and cleaning my wound in the evening, and errands, and working two jobs. The chasm was never wider and I wonder now, why he didn't just walk out? And then I'm extremely grateful that he didn't.
The surgeon on one of my check ups looked at me quite seriously and said that because of my Crohn's there was a chance; a slightly large chance; that the fistula might never, ever heal completely. Translation: You will have to stick cotton gauze into an open wound in your bottom cheek forever. It means days lived with massive pain, possible infection, no sex and pretty much living in hell.
Dark days after that. How is one supposed to process a statement like that? I would sit in the tub of warm water, staring blankly at the walls until the temperature of the water was as cold and numbing as the inside of me. I had little girls that I could barely take care of; a husband that was near his own point of collapse and a life I didn't know how to fix.
The walls unfortunately held no answers for me.
I continued to lose weight. And the lump in my bottom grew. Summer waned into autumn. A wasted summer where we at least tried to make it out back to play, even if I just sat there and watched them. But we didn't hardly leave the house.
The doctor's office and the surgery place started sending me letters asking why I wasn't paying them that much money. Because I didn't have it. I didn't have insurance.
Even with Hero Hottie working two jobs; the bills grew. I started pulling cash off our credit cards to pay for utilities and food and medicine.
Somehow; we managed to pay our mortgage even though we didn't have enough money. I still try to figure that one out and the numbers still don't make sense. There wasn't enough money to pay it. Yet, we managed. Faith; is all I have to say about that one.
The GI doctor's only answer was Remicade and he was unwilling to put me on any other of the regular drugs I usually went on when the Crohn's flared up. But hey, if I joined the Remicade club I would get this really cool fuzzy blanket to use while the IV drug that might cause cancer, pumped into my system.
Wow, a blanket. How thoughtful, while you're charging me thousands of dollars per treatment. That is generous. And who pays for the side effects if I happen to be one of those people that develops problems?
I was at a lost. I felt like I was slowly starving inside a body that was being fed. I was drowning in dark, depressed moods and my faith was at it's lowest point ever.
It's like making apple pie without listing apples on the recipe. You almost have a pie of some sort and some people might eat a brown sugar and crust pie but you're missing the main idea.
Taking prescriptions is a lot like that. We assume they're safe because the FDA told us so and they have their 'studies' and statistics to prove it. That doctor surely would research what he's giving us before he signs his name on that prescription and obviously these drugs are suppose to cure us. Why question that?
But if you start to research statistics on deaths and serious injuries from using prescription drugs; and I'm talking about more than just teenagers raiding their parents' medicine cabinet for a quick fix. I'm talking about taking a drug as prescribed by the doctor than you will find that your chances of dying or being seriously wounded are quite high.
In some causes, high enough that we have to wonder why we just blindly pop these pills the doctors hand us and assume that they will make us better and not worse. Should we start to demand a little bit more research; a little bit more effort on our government's part to assure our safety?
Yes. We should. Because some reports state that over a 100,000 people die a year from taking prescriptions or OTC medications.
So either the numbers from the actual FDA's Adverse Event Reporting System are wrong. Or the info packets they hand out with our drugs where it says a 'very, rare and small portion of the population may die a sudden and violent death from taking our product' are wrong. Oh, wait they don't even say that do they? Umm, someone is wrong.
But let me explain where my doubts of our medicine system really started....
First it was the doctor insisting that I could take the Remicade even though it would up my risk of cancer. I started to have doubts then. Why trade one disease for another?
Then when my surgeon took me off the narcotics and prescribed me Ultram.
And that's when my life nose dived downhill. I was slowly starting to get better before that point. The wound was healing, the pain was marginally better and the Crohn's was slowly fading back into it's remission state.
And then I took the Ultram. Now, usually I avoid most drugs. They upset my Crohn's and a temporary ache or pain or cold is much more tolerable to deal with than the stomach pains the Crohn's can cause.
But with the Ultram I had nothing. No upset stomach, no cramping, no unsightly bowel movements. So I figured it must have been okay.
It helped with the pain enough. It wasn't quite as good as the narcotic but it was sufficient. But then over the next few weeks my health weakened. The fistula wound was trying to get more infected again. Another lump of something painful formed under the other bottom cheek. And I was losing weight, despite eating.
The girls were quickly losing their Mommy and Bean took to raiding the cupboards whenever she wanted. Not because I wasn't feeding them. I would still drag myself from the bed, get their meals, give Abu her shots and collapse onto the couch. It was pitiful. I felt horrible.
The wound in my bottom forced me to wear pajama bottoms all the time. Jeans would rub against it. So I felt horribly undressed. I would clean up for the day; but nothing more. There was no pride in myself.
I was depressed and dark and wounded. Later I would find out that Ultram messes with your emotions; causing changes in your mood. Would have been nice to know sooner.
The girls did what they wanted. We didn't have structure or routine. I interfered when they would fight but if they weren't destroying something or hurting themselves; than I allowed them to do pretty much whatever. The house was always a mess; toys ran from one room to the next in huge piles. Their room was cluttered.
I managed to do the dishes sometimes; my Mom would do the rest. Hero Hottie took care of the trash, and the shopping, and cleaning my wound in the evening, and errands, and working two jobs. The chasm was never wider and I wonder now, why he didn't just walk out? And then I'm extremely grateful that he didn't.
The surgeon on one of my check ups looked at me quite seriously and said that because of my Crohn's there was a chance; a slightly large chance; that the fistula might never, ever heal completely. Translation: You will have to stick cotton gauze into an open wound in your bottom cheek forever. It means days lived with massive pain, possible infection, no sex and pretty much living in hell.
Dark days after that. How is one supposed to process a statement like that? I would sit in the tub of warm water, staring blankly at the walls until the temperature of the water was as cold and numbing as the inside of me. I had little girls that I could barely take care of; a husband that was near his own point of collapse and a life I didn't know how to fix.
The walls unfortunately held no answers for me.
I continued to lose weight. And the lump in my bottom grew. Summer waned into autumn. A wasted summer where we at least tried to make it out back to play, even if I just sat there and watched them. But we didn't hardly leave the house.
The doctor's office and the surgery place started sending me letters asking why I wasn't paying them that much money. Because I didn't have it. I didn't have insurance.
Even with Hero Hottie working two jobs; the bills grew. I started pulling cash off our credit cards to pay for utilities and food and medicine.
Somehow; we managed to pay our mortgage even though we didn't have enough money. I still try to figure that one out and the numbers still don't make sense. There wasn't enough money to pay it. Yet, we managed. Faith; is all I have to say about that one.
The GI doctor's only answer was Remicade and he was unwilling to put me on any other of the regular drugs I usually went on when the Crohn's flared up. But hey, if I joined the Remicade club I would get this really cool fuzzy blanket to use while the IV drug that might cause cancer, pumped into my system.
Wow, a blanket. How thoughtful, while you're charging me thousands of dollars per treatment. That is generous. And who pays for the side effects if I happen to be one of those people that develops problems?
I was at a lost. I felt like I was slowly starving inside a body that was being fed. I was drowning in dark, depressed moods and my faith was at it's lowest point ever.
Wednesday, August 15, 2012
Paths to Hell Aren't Clearly Marked
Days fell into a bleak routine. Hero Hottie would typically leave early for work, dark shadows under his eyes and a haggard expression on his face. Did he smile at all during this time? I don't recall. Joy was one thing missing from our household. It had left on some midnight train, and we didn't know if it had a return ticket.
I would sleep in. Deep bone fatigue filled me and I knew as soon as I pulled myself from the bed the pain of the day would start. If I hadn't had two small children I would have curled up in a ball under the covers and never got out of bed.
As it was, I had a four year old Bean and a two year old Abu to take care of. And if you can imagine any more stress in this situation, three months before my first fistula surgery, Abu had been diagnosed with type 1 diabetes.
Four to six shots a day. 8-10 blood sugar checks a day. The heart wrenching agony I felt as I watched my bright and beautiful toddler skipping around the house without a care in the world; her eyes innocent and clear...
And then with each shot, with each blood sugar poke, watching an awareness cloud that innocence as she realized that life wasn't as carefree as she assumed. I would cry at night, watching her sleep. Snuggle her close and wonder why in this 'advance' age of medicine that our best cure for a malfunctioning pancreas was numerous, violent invasions into the skin. Insulin can't be swallowed or inhaled; it has to be injected.
So many times a day I had to hurt my daughter. It killed me emotionally. To look at my baby, Abu who was the kindest and gentlest soul I had ever met; and have to cause her physical pain every few hours.
She was so brave too. Right from the start. This child didn't hardly complain, she didn't fight me; I didn't have to hold her down to give her the shots. No, she would stand still, like a little soldier in attendance, offer me her arm and stare into space.
At the age of two.
How could she be so strong? But there was something I started to realize about Abu; her inner faith is far more solid than mine. She doesn't struggle with it as much; she simply believes in good and that everything works out. And there is a bit naivete with that but she feels it in her soul.
At night she is the one who reminds us that we have to remember to say grace. She is the one who always offers forgiveness. And perhaps even at the age of two; that inner strength is what kept her from turning angry and bitter over the hand she had been given.
Perhaps it's her faith. And that's something I admire greatly. To have such a deep faith at her age...
Her diabetes is also one of the reasons I would drag myself from the bed. I wasn't going to let her down and not take care of her needs. She needed shots and she needed them on time so they would give her the best control over her blood sugars.
We would have breakfast, but not at the table like before. The girls took to eating it on little trays while they watched television.
Suddenly, they were watching a lot of television. We didn't have cable, so PBS was the only channel that offered us anything with kid stuff on it.
That and I would watch court tv. What the hell? Me, who didn't hardly watch television ever. I was now addicted to shows that featured people arguing and fighting and were in general miserable.
Then the fun part of the day would start. My Mom would come over to pack my bottom. And this gets a bit graphic; but the cotton gauze that went in the night before would have to be pulled out. This wasn't quite as painful but I would go into the bathroom and cry while I pulled and pulled. Then I would feel like throwing up because it was always trying to get infected- it was nasty.
Then a bath to soak the raw tissues. And sometimes I would stay in there for longer than the fifteen or twenty minutes I was told I needed because I knew what was coming as soon as I stepped from the tub.
Mom would play with the girls while I did this and then we would get them busy with something and I would lay on the bed and close the door. I hate to think how much they heard, even though I would bury my face deep into my pillow to muffle the pain. But they weren't stupid, they knew their Mom was in a lot of pain.
And it changed their life. It would take years for them to heal from this horrible experience of watching their Mom suffer with so much pain.
The first two months after the surgery things slowly started looking up. Like little tiny shoots of hope pushing bravely through the spring snow. I started feeling better in small, barely measurable inches but it was there. The wound was healing in equally slow measures but it was trying to heal. As the wound healed, the inches of cotton gauze I needed shrunk.
--And then the middle of this; zombies attacked and ate the whole town. We blasted any that came to the door with shotguns and then took off in the biggest kick butt pick up truck we could steal. It was awesome....No, that's not what happened. But I was getting too emotional writing this and zombies always make me feel better...
For the first two months I was taking a narcotic painkiller for the pain. This settled well with my stomach and didn't cause me problems with my Crohn's. But after two months the doctor was worried I might become addicted to it and switched me to Ultram.
It took ten seconds to write that prescription. Ten damn seconds. I can still remember his surgeon hands, under the fluorescent lighting of the doctor's office, pictures of muscles on the wall, barely taking a moment from his life to write it. The handwriting was atrocious, it was more scribble than penmanship but the pharmacy filled it.
And I started taking it.
Who knew I was actually taking pills that led straight to hell.
I would sleep in. Deep bone fatigue filled me and I knew as soon as I pulled myself from the bed the pain of the day would start. If I hadn't had two small children I would have curled up in a ball under the covers and never got out of bed.
As it was, I had a four year old Bean and a two year old Abu to take care of. And if you can imagine any more stress in this situation, three months before my first fistula surgery, Abu had been diagnosed with type 1 diabetes.
Four to six shots a day. 8-10 blood sugar checks a day. The heart wrenching agony I felt as I watched my bright and beautiful toddler skipping around the house without a care in the world; her eyes innocent and clear...
And then with each shot, with each blood sugar poke, watching an awareness cloud that innocence as she realized that life wasn't as carefree as she assumed. I would cry at night, watching her sleep. Snuggle her close and wonder why in this 'advance' age of medicine that our best cure for a malfunctioning pancreas was numerous, violent invasions into the skin. Insulin can't be swallowed or inhaled; it has to be injected.
So many times a day I had to hurt my daughter. It killed me emotionally. To look at my baby, Abu who was the kindest and gentlest soul I had ever met; and have to cause her physical pain every few hours.
She was so brave too. Right from the start. This child didn't hardly complain, she didn't fight me; I didn't have to hold her down to give her the shots. No, she would stand still, like a little soldier in attendance, offer me her arm and stare into space.
At the age of two.
How could she be so strong? But there was something I started to realize about Abu; her inner faith is far more solid than mine. She doesn't struggle with it as much; she simply believes in good and that everything works out. And there is a bit naivete with that but she feels it in her soul.
At night she is the one who reminds us that we have to remember to say grace. She is the one who always offers forgiveness. And perhaps even at the age of two; that inner strength is what kept her from turning angry and bitter over the hand she had been given.
Perhaps it's her faith. And that's something I admire greatly. To have such a deep faith at her age...
Her diabetes is also one of the reasons I would drag myself from the bed. I wasn't going to let her down and not take care of her needs. She needed shots and she needed them on time so they would give her the best control over her blood sugars.
We would have breakfast, but not at the table like before. The girls took to eating it on little trays while they watched television.
Suddenly, they were watching a lot of television. We didn't have cable, so PBS was the only channel that offered us anything with kid stuff on it.
That and I would watch court tv. What the hell? Me, who didn't hardly watch television ever. I was now addicted to shows that featured people arguing and fighting and were in general miserable.
Then the fun part of the day would start. My Mom would come over to pack my bottom. And this gets a bit graphic; but the cotton gauze that went in the night before would have to be pulled out. This wasn't quite as painful but I would go into the bathroom and cry while I pulled and pulled. Then I would feel like throwing up because it was always trying to get infected- it was nasty.
Then a bath to soak the raw tissues. And sometimes I would stay in there for longer than the fifteen or twenty minutes I was told I needed because I knew what was coming as soon as I stepped from the tub.
Mom would play with the girls while I did this and then we would get them busy with something and I would lay on the bed and close the door. I hate to think how much they heard, even though I would bury my face deep into my pillow to muffle the pain. But they weren't stupid, they knew their Mom was in a lot of pain.
And it changed their life. It would take years for them to heal from this horrible experience of watching their Mom suffer with so much pain.
The first two months after the surgery things slowly started looking up. Like little tiny shoots of hope pushing bravely through the spring snow. I started feeling better in small, barely measurable inches but it was there. The wound was healing in equally slow measures but it was trying to heal. As the wound healed, the inches of cotton gauze I needed shrunk.
--And then the middle of this; zombies attacked and ate the whole town. We blasted any that came to the door with shotguns and then took off in the biggest kick butt pick up truck we could steal. It was awesome....No, that's not what happened. But I was getting too emotional writing this and zombies always make me feel better...
For the first two months I was taking a narcotic painkiller for the pain. This settled well with my stomach and didn't cause me problems with my Crohn's. But after two months the doctor was worried I might become addicted to it and switched me to Ultram.
It took ten seconds to write that prescription. Ten damn seconds. I can still remember his surgeon hands, under the fluorescent lighting of the doctor's office, pictures of muscles on the wall, barely taking a moment from his life to write it. The handwriting was atrocious, it was more scribble than penmanship but the pharmacy filled it.
And I started taking it.
Who knew I was actually taking pills that led straight to hell.
Tuesday, August 14, 2012
The Start of Something Terrible
It was the end of 2004. Abu was one and a half and Bean was three and a half. It was Thanksgiving and I was having to sit on pillows to keep the pain in my bottom was ripping through me and destroying any semblance of a holiday.
I hid the pain well...but I was worried.
I have Crohn's disease. An ugly, brutal disease that can wreck havoc with your life. It takes the simple things...like eating and using the potty...and turns it into something wicked and vile. I was diagnosed when I was fifteen...just a teenager. It hit me hard, fast and ripped my life apart so quickly I didn't even know what had happened until a year later when I was finally allowed to be a teenager again.
In one month, I went from finally having dance lessons...the first time in my life and something I had waited for all my life...to sleeping almost twenty four hours a day. I was stricken with a digestive tract that didn't want to digest, caused me gut wrenching pain, and made me lose so much weight I had to go on liquid supplements for months just to regain the pounds.
I was sick. Lonely. And humbled. Suddenly, my know it all attitude...just my regular, teenage moods were left behind with my sudden awareness that life is short and should be savored.
When I turned sixteen a year later...I was just happy to be alive. I hung with friends, finished my homeschooling course and graduated early. With some natural healing applications and learning to control my stress levels, I had the Crohn's under control without drugs. A damn near miracle in the world of Crohn's. And something I didn't take for granted.
Until 2004, I had very little trouble with it. An occasionally mild flare up here and there. But I didn't need medicines and I didn't have any surgeries to deal with it. Sometimes I think any new doctors I saw didn't believe me when I said I had Crohn's because I didn't have a long list of surgeries and hospital stays to prove it.
Then in 2004, I think two years of stress and nutritionally poor food caught up with me. It started in 2001 on 9/11. I was working for my Mom at her fulfillment business. People hired us to handle their orders of merchandise they sold. And business was good.
Until that fateful day. I remember holding Bean, who was almost four months old, in front of the television at work, watching and crying and never realizing that this day...this day that I write this blog...would connect with that horrible, wretched day.
What a black and dark day. There is nothing more I can say about that day to explain it. We all feel it. We all remember.
But the very next day our orders dropped. And they continued dropping as the people and the economy struggled to find firm footing again.
And the orders kept dropping until May 2002, when my Mom had to close her business.
We lost the family business. I lost my job. And Hero Hottie had to put his dreams on hold to go back to work for a measly wage that didn't support us.
We moved in with my parents after selling our house and struggled to regain our footing. But the money wasn't there and the quality of food we ate quickly went down hill. The stress of sharing a house was incredible even though I love my parents.
And then Abu decided it was the perfect time to make her appearance. And I became so sick with that pregnancy that I had to stop working, just after finding a job and trying to enter back into the workforce.
Fast forward to Thanksgiving a year and a half after Abu was born. I thought my Crohn's was doing fine. But I know the bad food caught up with me and now I was in trouble. I developed...and excuse me for being blunt...fissures on my bottom. Cracks in my skin that eventually developed into fistulas. Which are nasty, horrible things. It's where tubes form under the skin leading from one place to another. But they're not supposed to be there. Mine were from my rectum to the outside of my bottom.
Nasty, painful things that leaked with infection. Constantly. And here I was with tiny children and all I could think about was the pain.
After a few courses of antibiotics it seem like they might heal. We finally managed to buy a house and moved out. I was going to start a daycare, so I could stay home with my children, and we were on our way. Finally. After three long years.
And then...the fistulas wouldn't heal. Within hours of going off the antibiotics, they would fill up with infection and the pain would be intense. I remember one time the pain was so bad I blacked out. That's how rotten it was.
So I did what any 21st century woman does. I got on the Internet and researched. Until I found an answer.
Unfortunately my answer was surgery.
So I bullied my GI doctor for a referral, because he thought my only path to healing was taking Remicade, which has a list of side effects eleven miles long, including may cause cancer. Because I wanted to trade my fistulas for CANCER. On top of that, the instructions for taking Remicade state "Do NOT take if you have an infection of any sort...even a hang nail." That sounds severe. My entire bottom at this point is heavily infected and the doctor wants me to take what???
No, I would try my luck with a surgeon. A guy who enjoys cutting people for a living. I try to avoid people with long knives, short knives, any sort of sharp object. I don't usually volunteer to allow them to actually cut into me. But here I was, grateful to be seeing him.
He asked me to pull down my pants and underwear, bend over the table and forget the concept of modestly....and in two seconds he said the only way to deal with the fistulas was surgery.
I knew that. I read it on the Internet.
Surgery I had. It was easy and I went home in a few hours. What I didn't know was how a fistula heals. And I have to tell you...I wouldn't wish a fistula on my worse enemy. That's how hellish the healing time is. It is hell on Earth. True torture is the modern day process of healing from these bitchy things.
Let me explain but it is gross and nasty.
First, the infected tissue inside my bottom was a goner. There is no saving that. The tissue is dead, nasty and has to be scrapped away. Since I had struggled with this infection for over six months before I had the surgery the area of my bottom that had been taken over my this infected tissue was huge. Inches wide, inches long, and inches thick. The doctor had removed a good deal on my interior butt cheek.
Now, to get this empty, vast area to heal, I had to have either Hero Hottie or my Mom, take long strips of cotton gauze; about two feet of it; and slowly, methodically push it into the wound.
The butt has many, many nerve endings. It's rich in nerve endings and I could feel every single one as the cotton gauze would touch the raw, open wound into my butt cheek.
I would cry. I would scream. I would nearly black out from the pain. I would pray for strength. I would curse God for allowing this to happen. I would bite my lip until it bled. I would wonder what the hell kind of life this was.
And I would go through this whole line of thinking in the ten minutes it would take to carefully stuff my wound.
On top of this hell...it was a killer to my relationship to Hero Hottie. The embarrassment I felt having to allow my husband to clean my wound and tend to it was incredible. If we thought we had our tough times before in our relationship...this would test it like nothing else.
He didn't mind taking care of me. But it was difficult. I could not work at all. Our income was crap and now we had a mortgage. Our medical bills sucked because I didn't have insurance.
And he was working two jobs, helping with the house and kids, and tending to a wife with a serious medical condition.
He was exhausted...drained emotionally and physically... and cut off from his wife because I wasn't mentally there anymore in the relationship. How could I be? Even with massive pain killers...all I could think about was the pain. And the twice daily cleaning on my wound. I tried to be a good mother but I missed so much of them being little.
And the only thing that kept me going was Bean and Abu. Because I couldn't fail them. Even though every day seemed like a huge failure. My mood was going downhill fast. And it didn't seem like it was going to get any better.
Luckily, I couldn't see just how bleak and dark the future was about to come. I would have lost all hope than and there.
I hid the pain well...but I was worried.
I have Crohn's disease. An ugly, brutal disease that can wreck havoc with your life. It takes the simple things...like eating and using the potty...and turns it into something wicked and vile. I was diagnosed when I was fifteen...just a teenager. It hit me hard, fast and ripped my life apart so quickly I didn't even know what had happened until a year later when I was finally allowed to be a teenager again.
In one month, I went from finally having dance lessons...the first time in my life and something I had waited for all my life...to sleeping almost twenty four hours a day. I was stricken with a digestive tract that didn't want to digest, caused me gut wrenching pain, and made me lose so much weight I had to go on liquid supplements for months just to regain the pounds.
I was sick. Lonely. And humbled. Suddenly, my know it all attitude...just my regular, teenage moods were left behind with my sudden awareness that life is short and should be savored.
When I turned sixteen a year later...I was just happy to be alive. I hung with friends, finished my homeschooling course and graduated early. With some natural healing applications and learning to control my stress levels, I had the Crohn's under control without drugs. A damn near miracle in the world of Crohn's. And something I didn't take for granted.
Until 2004, I had very little trouble with it. An occasionally mild flare up here and there. But I didn't need medicines and I didn't have any surgeries to deal with it. Sometimes I think any new doctors I saw didn't believe me when I said I had Crohn's because I didn't have a long list of surgeries and hospital stays to prove it.
Then in 2004, I think two years of stress and nutritionally poor food caught up with me. It started in 2001 on 9/11. I was working for my Mom at her fulfillment business. People hired us to handle their orders of merchandise they sold. And business was good.
Until that fateful day. I remember holding Bean, who was almost four months old, in front of the television at work, watching and crying and never realizing that this day...this day that I write this blog...would connect with that horrible, wretched day.
What a black and dark day. There is nothing more I can say about that day to explain it. We all feel it. We all remember.
But the very next day our orders dropped. And they continued dropping as the people and the economy struggled to find firm footing again.
And the orders kept dropping until May 2002, when my Mom had to close her business.
We lost the family business. I lost my job. And Hero Hottie had to put his dreams on hold to go back to work for a measly wage that didn't support us.
We moved in with my parents after selling our house and struggled to regain our footing. But the money wasn't there and the quality of food we ate quickly went down hill. The stress of sharing a house was incredible even though I love my parents.
And then Abu decided it was the perfect time to make her appearance. And I became so sick with that pregnancy that I had to stop working, just after finding a job and trying to enter back into the workforce.
Fast forward to Thanksgiving a year and a half after Abu was born. I thought my Crohn's was doing fine. But I know the bad food caught up with me and now I was in trouble. I developed...and excuse me for being blunt...fissures on my bottom. Cracks in my skin that eventually developed into fistulas. Which are nasty, horrible things. It's where tubes form under the skin leading from one place to another. But they're not supposed to be there. Mine were from my rectum to the outside of my bottom.
Nasty, painful things that leaked with infection. Constantly. And here I was with tiny children and all I could think about was the pain.
After a few courses of antibiotics it seem like they might heal. We finally managed to buy a house and moved out. I was going to start a daycare, so I could stay home with my children, and we were on our way. Finally. After three long years.
And then...the fistulas wouldn't heal. Within hours of going off the antibiotics, they would fill up with infection and the pain would be intense. I remember one time the pain was so bad I blacked out. That's how rotten it was.
So I did what any 21st century woman does. I got on the Internet and researched. Until I found an answer.
Unfortunately my answer was surgery.
So I bullied my GI doctor for a referral, because he thought my only path to healing was taking Remicade, which has a list of side effects eleven miles long, including may cause cancer. Because I wanted to trade my fistulas for CANCER. On top of that, the instructions for taking Remicade state "Do NOT take if you have an infection of any sort...even a hang nail." That sounds severe. My entire bottom at this point is heavily infected and the doctor wants me to take what???
No, I would try my luck with a surgeon. A guy who enjoys cutting people for a living. I try to avoid people with long knives, short knives, any sort of sharp object. I don't usually volunteer to allow them to actually cut into me. But here I was, grateful to be seeing him.
He asked me to pull down my pants and underwear, bend over the table and forget the concept of modestly....and in two seconds he said the only way to deal with the fistulas was surgery.
I knew that. I read it on the Internet.
Surgery I had. It was easy and I went home in a few hours. What I didn't know was how a fistula heals. And I have to tell you...I wouldn't wish a fistula on my worse enemy. That's how hellish the healing time is. It is hell on Earth. True torture is the modern day process of healing from these bitchy things.
Let me explain but it is gross and nasty.
First, the infected tissue inside my bottom was a goner. There is no saving that. The tissue is dead, nasty and has to be scrapped away. Since I had struggled with this infection for over six months before I had the surgery the area of my bottom that had been taken over my this infected tissue was huge. Inches wide, inches long, and inches thick. The doctor had removed a good deal on my interior butt cheek.
Now, to get this empty, vast area to heal, I had to have either Hero Hottie or my Mom, take long strips of cotton gauze; about two feet of it; and slowly, methodically push it into the wound.
The butt has many, many nerve endings. It's rich in nerve endings and I could feel every single one as the cotton gauze would touch the raw, open wound into my butt cheek.
I would cry. I would scream. I would nearly black out from the pain. I would pray for strength. I would curse God for allowing this to happen. I would bite my lip until it bled. I would wonder what the hell kind of life this was.
And I would go through this whole line of thinking in the ten minutes it would take to carefully stuff my wound.
On top of this hell...it was a killer to my relationship to Hero Hottie. The embarrassment I felt having to allow my husband to clean my wound and tend to it was incredible. If we thought we had our tough times before in our relationship...this would test it like nothing else.
He didn't mind taking care of me. But it was difficult. I could not work at all. Our income was crap and now we had a mortgage. Our medical bills sucked because I didn't have insurance.
And he was working two jobs, helping with the house and kids, and tending to a wife with a serious medical condition.
He was exhausted...drained emotionally and physically... and cut off from his wife because I wasn't mentally there anymore in the relationship. How could I be? Even with massive pain killers...all I could think about was the pain. And the twice daily cleaning on my wound. I tried to be a good mother but I missed so much of them being little.
And the only thing that kept me going was Bean and Abu. Because I couldn't fail them. Even though every day seemed like a huge failure. My mood was going downhill fast. And it didn't seem like it was going to get any better.
Luckily, I couldn't see just how bleak and dark the future was about to come. I would have lost all hope than and there.
Monday, August 13, 2012
Because I hate hospitals
Hero Hottie has been bugging me to write about my time in the hospital for a while now. I think for two reasons:
1. It is a deeply personal and upsetting time for me and writing about something that has happened to me helps me to deal with it. I suppose that's the artistic side of me. That's why I always tease people about not making me mad because then I'll make them the villain in my next story. I am just joking. A little bit. :)
2. My illness and subsequent stay in the hospital was a time of great growth and realizing just how strong I could be. And if sharing something of that magnitude can help someone else through their struggles, than it should be shared.
But I drag my feet. It happened six long years ago. A lifetime. And I still avoid thinking about it, talking about it and writing about it. I would prefer to keep the scars nicely hidden behind a facade of normal living and pretend that I wasn't inches away from the white light. Literally.
I think, and this is going to sound corny, but only love held me to this side of life.
Unfortunately, I can't birth Baby Blueberry at home with a midwife. Which in my state is pretty much illegal and with having torn my placenta not the best option for me- so off to the hospital I will be going sometime in the next four weeks.
(Are we that close already? Whew, I can't believe it. And I give thanks everyday for it too. Back in April and May when I was spending hours on the couch, praying for Blueberry, I wasn't sure if I would make it this far with my heart still intact. )
But the closer I get to having to stay in the hospital, even for something as natural as birth, the more I feel long buried anxieties and fears start to stir. I have moved so far away from those long days when I thought I might die...or so I thought. Apparently, I have not moved far enough. Again, time can only soften memories, help take the sharpness off of them, dull the edges....time can't heal.
Since I'm planning a natural birth, just like with Bean and Abu...this means for some crazy reason I'm choosing to feel all the pain of childbirth. To succeed in natural childbirth, you have to admit that to yourself--you can't sugar coat it. You can't just say: 'I'm having this baby with no painkillers. Piece of cake."
No. You have to say...aloud...I'm choosing to feel EVERYTHING.
Why do I choose this?
One: I have a Mom with chronic pain..it never goes away. Childbirth pain does goes away.
Two: I like to be in control of my body as much as possible. Having Crohn's disease is a bitch and sometimes leaves a person without any control, so I'm not one to give any more away than I have to.
Three: I hate needles. Especially in my spine. I probably hate needles in the spine more than the pain of childbirth.
For me to feel like I can enter the hospital and do this without begging for pain relief...because trust me, I did finally break down and start to want an epidural during my last labors. The pain is just so intense but I was so close I couldn't and Hero Hottie and the nurses were wonderful in keeping me focus on the end goal.
I have to be strong emotionally. And I don't feel strong on the inside when I start to think about entering the hospital. I start to feel weepy and fearful and all the horrible memories...every single one that clouds my mind at time...slams full force into my spirit and reminds me that I almost died in that building.
I can't have THOSE memories trying to be louder than the new -wonderful- memories I will be forming of giving birth to my precious Baby Blueberry. So how to quiet them?
How to silence them? Cut them off? Will them away?
They are a huge part of who I am today, regardless of how I feel about that time. I know this is going to show my geeky/nerdy side but I'm going to relate this to a Star Trek movie. I know, forgive me but I was raised on Hamburger Helper, bologna sandwiches and reruns of Star Trek.
In either the fifth or sixth movie, the bad guy is offering to 'erase' the painful memories of the main cast members. Offering them a life without all that emotional baggage. How tempting. How peaceful. But of course, Captain James T Kirk, our hero, refuses such a thing, even though is past is littered with painful memories. Why? Simply because he wouldn't be the person he is without those memories.
Would I ever repeat my stay at the hospital? Hell, no. I'm not crazy. But did I learn from it. Yes. Is it a part of me? Absolutely, without question. Even my writing is better because of it. My relationships. My understanding of what is important in life.
But it does still have a hold over me. Yes, and that's what I need to finally let go of. So when I enter the hospital in the next few weeks, I'm not dwelling on the horrible but I can concentrate on bringing this new, unexpected little person into my life.
So hopefully I don't bore my readers too much with such serious posts over the next weeks. And I hope you don't mind me being so personal. And I do hope that you find a positive message out of it.
And I promise I won't use anymore Star Trek analogs either. But I can't promise I won't drag something else equally nerdy or geeky into the mix.
1. It is a deeply personal and upsetting time for me and writing about something that has happened to me helps me to deal with it. I suppose that's the artistic side of me. That's why I always tease people about not making me mad because then I'll make them the villain in my next story. I am just joking. A little bit. :)
2. My illness and subsequent stay in the hospital was a time of great growth and realizing just how strong I could be. And if sharing something of that magnitude can help someone else through their struggles, than it should be shared.
But I drag my feet. It happened six long years ago. A lifetime. And I still avoid thinking about it, talking about it and writing about it. I would prefer to keep the scars nicely hidden behind a facade of normal living and pretend that I wasn't inches away from the white light. Literally.
I think, and this is going to sound corny, but only love held me to this side of life.
Unfortunately, I can't birth Baby Blueberry at home with a midwife. Which in my state is pretty much illegal and with having torn my placenta not the best option for me- so off to the hospital I will be going sometime in the next four weeks.
(Are we that close already? Whew, I can't believe it. And I give thanks everyday for it too. Back in April and May when I was spending hours on the couch, praying for Blueberry, I wasn't sure if I would make it this far with my heart still intact. )
But the closer I get to having to stay in the hospital, even for something as natural as birth, the more I feel long buried anxieties and fears start to stir. I have moved so far away from those long days when I thought I might die...or so I thought. Apparently, I have not moved far enough. Again, time can only soften memories, help take the sharpness off of them, dull the edges....time can't heal.
Since I'm planning a natural birth, just like with Bean and Abu...this means for some crazy reason I'm choosing to feel all the pain of childbirth. To succeed in natural childbirth, you have to admit that to yourself--you can't sugar coat it. You can't just say: 'I'm having this baby with no painkillers. Piece of cake."
No. You have to say...aloud...I'm choosing to feel EVERYTHING.
Why do I choose this?
One: I have a Mom with chronic pain..it never goes away. Childbirth pain does goes away.
Two: I like to be in control of my body as much as possible. Having Crohn's disease is a bitch and sometimes leaves a person without any control, so I'm not one to give any more away than I have to.
Three: I hate needles. Especially in my spine. I probably hate needles in the spine more than the pain of childbirth.
For me to feel like I can enter the hospital and do this without begging for pain relief...because trust me, I did finally break down and start to want an epidural during my last labors. The pain is just so intense but I was so close I couldn't and Hero Hottie and the nurses were wonderful in keeping me focus on the end goal.
I have to be strong emotionally. And I don't feel strong on the inside when I start to think about entering the hospital. I start to feel weepy and fearful and all the horrible memories...every single one that clouds my mind at time...slams full force into my spirit and reminds me that I almost died in that building.
I can't have THOSE memories trying to be louder than the new -wonderful- memories I will be forming of giving birth to my precious Baby Blueberry. So how to quiet them?
How to silence them? Cut them off? Will them away?
They are a huge part of who I am today, regardless of how I feel about that time. I know this is going to show my geeky/nerdy side but I'm going to relate this to a Star Trek movie. I know, forgive me but I was raised on Hamburger Helper, bologna sandwiches and reruns of Star Trek.
In either the fifth or sixth movie, the bad guy is offering to 'erase' the painful memories of the main cast members. Offering them a life without all that emotional baggage. How tempting. How peaceful. But of course, Captain James T Kirk, our hero, refuses such a thing, even though is past is littered with painful memories. Why? Simply because he wouldn't be the person he is without those memories.
Would I ever repeat my stay at the hospital? Hell, no. I'm not crazy. But did I learn from it. Yes. Is it a part of me? Absolutely, without question. Even my writing is better because of it. My relationships. My understanding of what is important in life.
But it does still have a hold over me. Yes, and that's what I need to finally let go of. So when I enter the hospital in the next few weeks, I'm not dwelling on the horrible but I can concentrate on bringing this new, unexpected little person into my life.
So hopefully I don't bore my readers too much with such serious posts over the next weeks. And I hope you don't mind me being so personal. And I do hope that you find a positive message out of it.
And I promise I won't use anymore Star Trek analogs either. But I can't promise I won't drag something else equally nerdy or geeky into the mix.
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