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.
Wednesday, August 22, 2012
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.
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