I've always been a hardworking, active person. But since I got sick it's hard for me even to get out of bed anytime during the day. I'm not only physically exhausted but I'm also in a lot of pain. With all that being said it is still really hard for me to accept that I can't help people anymore.
We are at my mom's house and they are roofing. My husband, step-dad, and his nephew have been working from sun up to sun down for the last 4 days. My mom and my kids have been cleaning up on the ground. It's really hard for me to sit and watch other people work. I feel completely useless.
I have been waking up and helping serve they guys lunch then usually have to lay back down because of the pain and nausea. Then I wake back up go with mom to get some groceries then lay back down again. I have never in my life felt so worthless. I just can't believe that this little bit of walking around can make my body so tired and the pain and nausea so bad. Not only do I hurt and feel terrible but I look 9 months pregnant from this ridiculous bloating!
Grrr.... I guess I will someday accept I'm not the person I use to be. But today is not that day.
Sunday, September 4, 2016
Tuesday, August 30, 2016
Pain
Pain... why Oh why do we have to endure so much pain? Some days it's completely unbearable. It gets to the point I ask my husband if I can just end my suffering. The laying on the couch in a ball crying clutching my stomach.
Yet a lot of gastroenterologist say that gastroparesis doesn't cause pain. I wish they could feel it for just one day heck maybe even just one hour. Then maybe they would change their opinion about gastroparesis causing pain.
Most of us are called drug seekers but that is so far from the truth. The honest truth is we endure so much. Constant nausea, vomiting, inability to eat, which causes social isolation, bloating, all the side effects from vomiting, and PAIN. We just want to relieve the symptoms enough to get through the day without begging God to end our suffering.
I just want people to understand the pain is real.
Internal battle
Today I did something I knew I shouldn't, I went to Dairy Queen and had a 4 piece chicken strip basket. I only had 3 pieces of chicken, a couple bites of toast, and a couple fries. I knew it would be a bad idea, but I chose to do it anyway.
Why? I keep asking myself that same exact question. The conclusions I have come to is that food is a social thing. Everywhere you look you see something to do with food. Television is the worst, almost every commercial is for some kind of food. The reason that I eat is normally not because I'm hungry but because I miss the taste and texture. I've heard a lot of people chew their food then spit it out so they don't get sick but still get to enjoy it. I've thought about this but to me it seems like a waste of money and kinda gross. I can't say that I've ruled it out because it's better than eating then getting sick.
Well off for a nap, curled up with my heating pad, feeding tube hooked up, and drain hooked up. Hopefully after it all drains I will have a better day. I have to pack for a 12 hour drive tomorrow.
Why? I keep asking myself that same exact question. The conclusions I have come to is that food is a social thing. Everywhere you look you see something to do with food. Television is the worst, almost every commercial is for some kind of food. The reason that I eat is normally not because I'm hungry but because I miss the taste and texture. I've heard a lot of people chew their food then spit it out so they don't get sick but still get to enjoy it. I've thought about this but to me it seems like a waste of money and kinda gross. I can't say that I've ruled it out because it's better than eating then getting sick.
Well off for a nap, curled up with my heating pad, feeding tube hooked up, and drain hooked up. Hopefully after it all drains I will have a better day. I have to pack for a 12 hour drive tomorrow.
Saturday, August 27, 2016
Realization
Today I came to a realization about my health. I have come to the point in my life where there is no next step to try. I am at the end. Which has had me thinking a lot about what I do want in life. I would love to have another step to try but I won't be hoping for that anymore. My focus and attention will be going toward other things. All I want now is to be able to well enough to spend as much time with my husband and kids that I can. I just want to be able to relieve the pain and nausea so I can actually have some fun with my family. I'm scared of death like most people, but I understand it more now than I ever have. Life isn't about focusing on a miracle cure. It's about spending time ever in the moment. Enjoy every second of time with everyone. Memories to hold onto when you feel like giving up.
Thursday, August 18, 2016
My History
The story of who I am is way more than what my illness is. I am a mother of two amazing children a preteen son named Trenton and a soon to be preteen daughter named Bentley. I have an amazing husband who is my main support, my cheerleader. We have been married for 5 years and together for 10. I am a passionate, caring person. My life has been about caring for others. I have worked in nursing homes and with the mentally disabled children. I love to garden and rehabilitate plants. I have taken up painting, and now writing.
The story of me, its a long one, a journey in which I am glad I have traveled. The person I am was severely impacted the day I was diagnosed with gastroparesis. An illness I wouldn't wish upon my worse enemy.
What is gastroparesis? It basically means that my stomach has completely stopped digesting food and moving it into the intestines. Seems like a simple thing that wouldn't be too bad, right? Well, I thought so myself when I first heard the doctors talking about it. But it is far from simple. If your stomach doesn't digest food or empty it into your intestines, you can't eat. When I first got diagnosed if I ate anything it would sit in my stomach for days, fermenting. It was a terrible feeling and produced the worse smelling gas I had ever smelt in my life, sulfur burps. The food was literally rotting inside of me. Those were the not so bad days. The days I was actually able to hold some food down. The worse part is the nausea and vomiting. I have a family, as I mentioned before. They have to eat. With eating comes cooking, with cooking comes the smell of food. Imagine morning sickness, when if you got the wrong smell you would be in the bathroom vomiting. That is what it's like. When you have the flu and someone brings you food and the smell sends you into a vomiting frenzy. I got use to the throwing up. It was kind of a routine for me. I would wake up and try to get the kids to school, then it would be countless hours of being in the bathroom. Throwing up hour after hour, wondering where the fluids are even coming from. In between vomiting fits I would lay on the floor in the fetus position in excruciating pain. Many doctors have told me that gastroparesis doesn't cause pain. If that is the case why one Earth am I always feeling it and crying myself to sleep because nothing can give me relief?
My life hasn't been easy the last three years. I don't want pity. I don't want people to "feel sorry for me". I usually try to hide how I feel. I cover up everything with oh I'm doing ok, or I'm fine. I am not one to seek attention. I don't want to be in the spotlight or even talked about.
It was the week before Halloween in 2013, I started throwing up and having a terrible "rotten" stomach feeling. I figured since I worked at the school I probably just contracted a stomach bug. After many emergency room visits, finally in November, I was told the doctor thought my gallbladder wasn't working properly probably due to gallstones. I had a sonogram and there were no gallstones. The doctor then ordered a CCK. I had to lay on my back for an hour while this machine watched the dye, that was injected into an IV, go through my gallbladder. I was given the results that day and told that it was only functioning at 3%. I was relieved finally an answer, and a simple one at that. I had it removed on November 13, 2013.
I was back in the emergency room a week later with the same symptoms. I was nauseous 24/7, vomiting anywhere from 5 to 10 times a day, the pain was so bad in my abdomen. I was sleeping anywhere from 18 to 20 hours a day. The doctors couldn't find anything wrong and finally sent me to see a gastroenterologist. It took a few months to get in to see her, Dr. Ellis. She immediately ordered tests to see what if she could find any reason behind what was happening to me. There was a day she ordered a barium swallow. You drink some poprocks like things and it causes gas in your intestines. Then you have to hastily drink a thick, milkshake texture, container of barium followed by a thinner version of barium. I was laying on this my back looking at this T.V. that looked like it was made way before I was. That's when the radiologist said. I know what's wrong with you. You have intestinal malrotation. I was born with all of my large intestine on my left side and all of my small on the right, my appendix was down by my uterus. The cause of all of the problems, or so my surgeon thought, was because my large intestines were twisting and the nerves were dying. I had 16" of my large intestines removed on April 28, 2014.
I was relieved when we found an answer and we did the surgery. I really thought it would be the end of my problems. I thought this isn't so bad. Sure I have a huge incision but it just adds to my character. I was wrong, boy was I wrong. The symptoms came back and they were terrible. On top of the previous symptoms I was bloating up anytime I would eat. I would have an almost flat stomach to looking like I could give birth at any minute. In the summer of 2014 I went 2 months without going #2. It was terrible. I started vomiting up stool. I was referred to another surgeon in November of 2014. He looked over my files and had a talk with my about everything that had happened and how I was feeling. He decided that I had colonic inertia. He believed that the malrotation and twisting of my intestines caused the rest of the nerves in my large intestines to die. I had the rest of my large intestines and part of my small removed in December 2014.
Again I was over joyed that I had found a solution to my problem. It was over in the past, just a small little sliver in the person I am. I again was wrong. The symptoms were still there. Only now I could finally use the bathroom again. I was still vomiting constantly, unable to eat or even stand to be around food, the pain was terrible. I went back to the my wonderful gastroenterologist, Dr. Ellis, and she did a test to see if my stomach was working properly. This test is called a gastric emptying study. I was told I needed to come into see her and made my appointment. She told me that I have gastroparesis. She explained everything to me and told me to try the diet. I was sent home with a stack of papers on what foods I could and couldn't eat. I tried this for a few months but nothing seemed to help. I was on so many nausea meds but they never stopped me from spending my "quality" time in the bathroom. She sent me to a motility specialist and that was a waste of time. She was probably the worse doctor I have ever seen. She wouldn't listen to me and would talk over everything I would try to tell her. Over the course of a few months we tried every motility drug out there and nothing seemed to help. She quickly gave up on me and referred me somewhere else. I met with Dr. Eaker and he sent me to a surgeon for a gastric stimulator, it is supposed to stimulate the muscles in the stomach to get it to empty.
I met with Dr. Laurie and he went over everything and did blood work. He found I was severely malnourished and dehydrated. We decided to do the gastric stimulator but my insurance wouldn't pay for any of it. So I went back to see him. We did a pyloroplasty, they cut open the intersection between my stomach and small intestines and divided the muscles in the hope that it would be easier for food to flow through. During this surgery he also put in a j tube and g tube, feeding tubes. Surgery went well but my body was not healing the way it should. He told me the next few months would be long and it would take a long time for my body to heal. This isn't a solution this is a crutch to help me get through life.
The story of me, its a long one, a journey in which I am glad I have traveled. The person I am was severely impacted the day I was diagnosed with gastroparesis. An illness I wouldn't wish upon my worse enemy.
What is gastroparesis? It basically means that my stomach has completely stopped digesting food and moving it into the intestines. Seems like a simple thing that wouldn't be too bad, right? Well, I thought so myself when I first heard the doctors talking about it. But it is far from simple. If your stomach doesn't digest food or empty it into your intestines, you can't eat. When I first got diagnosed if I ate anything it would sit in my stomach for days, fermenting. It was a terrible feeling and produced the worse smelling gas I had ever smelt in my life, sulfur burps. The food was literally rotting inside of me. Those were the not so bad days. The days I was actually able to hold some food down. The worse part is the nausea and vomiting. I have a family, as I mentioned before. They have to eat. With eating comes cooking, with cooking comes the smell of food. Imagine morning sickness, when if you got the wrong smell you would be in the bathroom vomiting. That is what it's like. When you have the flu and someone brings you food and the smell sends you into a vomiting frenzy. I got use to the throwing up. It was kind of a routine for me. I would wake up and try to get the kids to school, then it would be countless hours of being in the bathroom. Throwing up hour after hour, wondering where the fluids are even coming from. In between vomiting fits I would lay on the floor in the fetus position in excruciating pain. Many doctors have told me that gastroparesis doesn't cause pain. If that is the case why one Earth am I always feeling it and crying myself to sleep because nothing can give me relief?
My life hasn't been easy the last three years. I don't want pity. I don't want people to "feel sorry for me". I usually try to hide how I feel. I cover up everything with oh I'm doing ok, or I'm fine. I am not one to seek attention. I don't want to be in the spotlight or even talked about.
It was the week before Halloween in 2013, I started throwing up and having a terrible "rotten" stomach feeling. I figured since I worked at the school I probably just contracted a stomach bug. After many emergency room visits, finally in November, I was told the doctor thought my gallbladder wasn't working properly probably due to gallstones. I had a sonogram and there were no gallstones. The doctor then ordered a CCK. I had to lay on my back for an hour while this machine watched the dye, that was injected into an IV, go through my gallbladder. I was given the results that day and told that it was only functioning at 3%. I was relieved finally an answer, and a simple one at that. I had it removed on November 13, 2013.
I was back in the emergency room a week later with the same symptoms. I was nauseous 24/7, vomiting anywhere from 5 to 10 times a day, the pain was so bad in my abdomen. I was sleeping anywhere from 18 to 20 hours a day. The doctors couldn't find anything wrong and finally sent me to see a gastroenterologist. It took a few months to get in to see her, Dr. Ellis. She immediately ordered tests to see what if she could find any reason behind what was happening to me. There was a day she ordered a barium swallow. You drink some poprocks like things and it causes gas in your intestines. Then you have to hastily drink a thick, milkshake texture, container of barium followed by a thinner version of barium. I was laying on this my back looking at this T.V. that looked like it was made way before I was. That's when the radiologist said. I know what's wrong with you. You have intestinal malrotation. I was born with all of my large intestine on my left side and all of my small on the right, my appendix was down by my uterus. The cause of all of the problems, or so my surgeon thought, was because my large intestines were twisting and the nerves were dying. I had 16" of my large intestines removed on April 28, 2014.
I was relieved when we found an answer and we did the surgery. I really thought it would be the end of my problems. I thought this isn't so bad. Sure I have a huge incision but it just adds to my character. I was wrong, boy was I wrong. The symptoms came back and they were terrible. On top of the previous symptoms I was bloating up anytime I would eat. I would have an almost flat stomach to looking like I could give birth at any minute. In the summer of 2014 I went 2 months without going #2. It was terrible. I started vomiting up stool. I was referred to another surgeon in November of 2014. He looked over my files and had a talk with my about everything that had happened and how I was feeling. He decided that I had colonic inertia. He believed that the malrotation and twisting of my intestines caused the rest of the nerves in my large intestines to die. I had the rest of my large intestines and part of my small removed in December 2014.
Again I was over joyed that I had found a solution to my problem. It was over in the past, just a small little sliver in the person I am. I again was wrong. The symptoms were still there. Only now I could finally use the bathroom again. I was still vomiting constantly, unable to eat or even stand to be around food, the pain was terrible. I went back to the my wonderful gastroenterologist, Dr. Ellis, and she did a test to see if my stomach was working properly. This test is called a gastric emptying study. I was told I needed to come into see her and made my appointment. She told me that I have gastroparesis. She explained everything to me and told me to try the diet. I was sent home with a stack of papers on what foods I could and couldn't eat. I tried this for a few months but nothing seemed to help. I was on so many nausea meds but they never stopped me from spending my "quality" time in the bathroom. She sent me to a motility specialist and that was a waste of time. She was probably the worse doctor I have ever seen. She wouldn't listen to me and would talk over everything I would try to tell her. Over the course of a few months we tried every motility drug out there and nothing seemed to help. She quickly gave up on me and referred me somewhere else. I met with Dr. Eaker and he sent me to a surgeon for a gastric stimulator, it is supposed to stimulate the muscles in the stomach to get it to empty.
I met with Dr. Laurie and he went over everything and did blood work. He found I was severely malnourished and dehydrated. We decided to do the gastric stimulator but my insurance wouldn't pay for any of it. So I went back to see him. We did a pyloroplasty, they cut open the intersection between my stomach and small intestines and divided the muscles in the hope that it would be easier for food to flow through. During this surgery he also put in a j tube and g tube, feeding tubes. Surgery went well but my body was not healing the way it should. He told me the next few months would be long and it would take a long time for my body to heal. This isn't a solution this is a crutch to help me get through life.
Reasons
The life of the chronically ill. I'm not sure anyone, who isn't sick or loves someone who is sick, can truly understand what that means. I'm talking about watching your body die a little more everyday. The fight that you have to endure every time you wake up. It isn't am easy concept to understand.
I sometimes find myself wondering what it is I am supposed to be learning from all of this. You are always told everything in life happens for a reason. What is the reason behind me being sick? I always aspired to want to be something amazing in life. To make a difference, to be "important". Is this the Lords way of showing me that being a mother and a wife is enough. That being able to wake up everyday and spend time with my family is the true meaning of life?
As young children we are always asked what we wanted to be when we grow up. Is that the problem in our society. Our whole entire lives are planned around our career. From our first day of kindergarten until the last day of high school, we are asked what our career goals are. Most of the time if you express your want to travel and see the world, to live free, you are looked at as if there is something wrong with you.
I have spend a great deal of time the last few years asking myself and God, why me? Did I do something extremely terrible and deserve to be ill? Is this my punishment for a crime against the Lord I have committed? You are told time and again that God gives his hardest battles to his strongest warriors. Is that what this is? Am I a warrior God has chosen to fight a battle, a battle for my life? It's hard to think of the possibilities of why I am the way I am. Why I have to wake up everyday feel like I did the day before.
My life today is nothing like I had planned. I wanted to have a wonderful career, being successful as a doctor. I wanted to heal and help children. I wanted to give my kids the things I never had in life. I wanted the "American Dream". The big house with the white picket fence. I wanted it all. Now, my whole perspective on life has changed. I want my husband, my kids, my family and friends. I could not care where we are, as long as we are together. I am just thankful everyday I wake up that I am able to live another day.
I look at other peoples lives. Sometimes I am envious. The things they get to do. The things they can afford. The new cars, or houses. How they can afford the nicer things in life. Other times I truly feel pity for them. They don't understand that they spend so much time working for those material things that they lose time with their families, the most important thing in life. I don't believe life is about waking up and going to work, rushing to sports practice or dance, to hastily eat supper in the car or a quick meal before its time for bed. I believe the true reason for living is to simply enjoy the moments you get with your family. I know that you have to work to survive, but working yourself senseless just for a new car that you really don't need... is that worth missing time you will never get back with your kids? I guess being ill has both been a blessing and a curse. It has opened my eyes to the important things, at least the important things to me.
I sometimes find myself wondering what it is I am supposed to be learning from all of this. You are always told everything in life happens for a reason. What is the reason behind me being sick? I always aspired to want to be something amazing in life. To make a difference, to be "important". Is this the Lords way of showing me that being a mother and a wife is enough. That being able to wake up everyday and spend time with my family is the true meaning of life?
As young children we are always asked what we wanted to be when we grow up. Is that the problem in our society. Our whole entire lives are planned around our career. From our first day of kindergarten until the last day of high school, we are asked what our career goals are. Most of the time if you express your want to travel and see the world, to live free, you are looked at as if there is something wrong with you.
I have spend a great deal of time the last few years asking myself and God, why me? Did I do something extremely terrible and deserve to be ill? Is this my punishment for a crime against the Lord I have committed? You are told time and again that God gives his hardest battles to his strongest warriors. Is that what this is? Am I a warrior God has chosen to fight a battle, a battle for my life? It's hard to think of the possibilities of why I am the way I am. Why I have to wake up everyday feel like I did the day before.
My life today is nothing like I had planned. I wanted to have a wonderful career, being successful as a doctor. I wanted to heal and help children. I wanted to give my kids the things I never had in life. I wanted the "American Dream". The big house with the white picket fence. I wanted it all. Now, my whole perspective on life has changed. I want my husband, my kids, my family and friends. I could not care where we are, as long as we are together. I am just thankful everyday I wake up that I am able to live another day.
I look at other peoples lives. Sometimes I am envious. The things they get to do. The things they can afford. The new cars, or houses. How they can afford the nicer things in life. Other times I truly feel pity for them. They don't understand that they spend so much time working for those material things that they lose time with their families, the most important thing in life. I don't believe life is about waking up and going to work, rushing to sports practice or dance, to hastily eat supper in the car or a quick meal before its time for bed. I believe the true reason for living is to simply enjoy the moments you get with your family. I know that you have to work to survive, but working yourself senseless just for a new car that you really don't need... is that worth missing time you will never get back with your kids? I guess being ill has both been a blessing and a curse. It has opened my eyes to the important things, at least the important things to me.
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