Imagine having spent years of your life in and out of hospitals, having tubes shoved down your nose, and fighting tooth and nail to recovery from an eating disorder only to go to a Halloween party to find someone wearing a costume mocking the disease that you have fought against for years. I never even thought of this as a possibility until I was scrolling my news feed on Facebook the other day and saw a link one of my friends had posted to share her disgust. I won't show the link mainly because the costume made me physically ill and the comments on the actual link made me realize how much society still doesn't get how severe and life threatening eating disorders truly are. To put it simply the costume is a black mini dress with a skeleton down the front of it and a tape measure hanging around the waist. They even went as far as to name this monstrosity Anna Rexia.
When I first saw it I think I was too shocked to even react right away, but once the shock wore off ten seconds later I was angry. I began "dieting" by the time I was sixteen and within a few months it became an obsession that would imprison until I was twenty three and will haunt me for the rest of my life. The summer before my senior year it was becoming obvious that I had issues, I wasn't eating, I was losing weight, and had taken to wearing long sleeves in the middle July to cover up the fact that I had begun cutting myself. My world was spinning out of control and by the middle of October of my senior year of high school rolled around it was apparent I had a serious problem, and once cuts were found on me at school my secret was out. The day before Homecoming I was officially diagnosed with Anorexia Nervosa, a demon that had only begun to show it's ugly face.
Instead of going to college with my music scholarship I was hospitalized the first time from my birthday in December until February. When I finally got to go to school I was a year behind my friends and lost my music scholarships. I lost control the first semester, spent all my time running at the rec center and avoiding the dining hall. I ended up meeting the doctor that essentially kept me alive the next few years and never gave up on me, and come finals my first semester I was admitted to the adolescent unit of the hospital with a tube down my nose to give me nutrition. This became a regular occurrence leading to a surgical feeding tube being placed.
I lost all those years until I hit rock bottom at twenty three and decided I either had to die or recover...I actually tried to kill myself before I went with option two. Looking back I lost my youth to anorexia, things I never got to do because I was too busy focusing on the food and the numbers and punishing myself when I thought I was weak. I lost all but a few friends, my family stopped trusting me, and I made a disease that my body already had get so bad that once I wanted to eat my body would no longer let me. No one understood why I couldn't stop, couldn't "just eat", and often spoke to me like I was just being a spoiled brat trying to punish everyone.
I spent many months in rooms with others that suffer from eating disorders and they faced the same thing I did...no one understood that we weren't doing this by choice. The simple fact is anorexia, bulimia, and all other eating disorders are illnesses. People who have survived their eating disorders and even those who have lost loved ones to them have fought for awareness, fought to get insurance companies to pay for treatment, and have continued to fight to save the lives of those suffering. That Halloween costume is a slap in the face to every person who has fought to raise awareness, who has fought to survive, and to those who were tragically lost because no one saw what they were doing, or they couldn't get they help they needed because some person a thousand miles away at an insurance company decided they weren't "sick enough" yet.
If you've ever seen an eating disorder up close you would be as outraged as I am over this. The onset age of eating disorders has fallen extremely low as the years progressed. Hospitals and treatment centers usually had programs for teenagers and adults, but now they have had to open programs specifically designed for children. When I say children I'm talking as young as six, younger in some cases. Imagine sending your six year old off to live at a treatment center for months, crying and pleading with you not to leave, and then when you visit you see your baby with a tube down her nose just to get her the nutrition her body needs. Anorexia has the highest mortality rates of any mental illness and in children it can progress even faster and cause very serious damage because their bodies aren't even close to developed yet. I lived the disease and I saw those very kids, and I was heartbroken to know that kids that young could be feeling the same things that I was feeling as a teenager and young adult. I have an eleven year old little sister and every chance I get I make sure to tell her how beautiful she is, and when I heard her call herself fat one day I almost broke down. The last thing I want is her to see some ignorant person dressed up as "Anna Rexia" for Halloween. These kids follow the examples that we set, and there is nothing funny about this costume. It is sick that someone would have the nerve to buy it and wear it out in public.
If you want to play dress up and think that it would be super fun to dress up like an eating disorder let's go ahead and give you everything that comes with it. First you get to take everything you love out of your diet and start exercising obsessively. Then you get to start lying to everyone who cares about you because you have to protect your ED, they would try to take it away from you. Now you find yourself alone, depressed, and maybe you hurt yourself in other ways like cutting or swallowing some pills. You eventually get to take a trip to the emergency room where they will put you in the hospital and shove a tube down your nose to save your life. While in the hospital your every freedom is taken away...do you like showering with a nurse there, pooping with someone in the door, someone watching and telling you when to eat, what to eat, and how to eat? And, when it is all said and done if you were able to find recovery, which some aren't you will always have that voice in the back of your head trying to creep its way back in telling you that you are worthless, pathetic, and fat. You are forever changed by the disease, and you will always have to be aware of your actions making sure to keep that monster at bay. Does it really sound fun to have an eating disorder?
Tuesday, October 29, 2013
Sunday, October 27, 2013
My husband and caregiver
I've had a few different topics on my heart to write about lately, but this one seemed to be the right one for tonight. As I sit here listening to my lil man and big man wrestling around getting ready for bed I can't help but smile and realize how lucky I am to have a husband here with me helping in everyway he knows how. It is so easy when you're sick to constant focus on your own pain, your own exhaustion, your own depression after bad news, your own fears, and often forget about the person taking care of you. I've spent most of the day rolling this topic over and over in my head trying to see all of this from Josh's perspective.
Most people know our story, how he helped me out of the darkness of my eating disorder and self harm and was there every step of the way as I began the long road to recovery. As my recovery from anorexia and self harm was becoming pretty firm the gastroparesis reared its ugly head causing me to get sicker. We had only been together a few months before I stopped tolerating tube feeds. He sat in the ER with me more times than I can count listening to the surgeons telling us it was the disease progressing and they couldn't do anything about it. When I ended up with swine flu he practically carried me to the ER because we didn't have a car so we had to find buses to get everywhere back then. I was put in isolation and a PICC line placed to start TPN. At this point Josh learned everything from dressing changes to setting up the infusion. At this point I was sure he was going to head for the hills because it wasn't like we were married, he didn't have to sign on to take care of a sick woman. His love never faltered though even on days when I wanted to give up he was there smiling and spiking another two liter bag of TPN.
After a month insurance decided that they weren't going to pay for IV nutrition anymore because I had become more stable. Josh watched as I began to crash again, getting so weak I couldn't even walk to the bathroom or shower without his help. During that time I selfishly could only think of how this disease was unfair and throwing myself little pity parties not even thinking about the man who was devoting his every moment to take care of me, giving up his whole life to clean up puke, spending nights sleeping on the floor of the emergency room, and holding me while watching a chick flick rather than going out on the town. He did it without complaining and he became my voice as I got weaker. He argued with doctors and Medicaid all the while dealing with my childish "why me" crap. He would just remind me that we were like Johnny and June and would get through it together, and when I thought he was done with me he proved me wrong by getting down on one knee in our bedroom asking me to marry him. A few days after we got engaged my IV nutrition was approved long term, we were moving into a nice place where his kids (I consider them mine too) could stay with us, and though I was still sick we were doing much better and facing every challenge that came our way together. We had no idea where life was headed.
When you are on IV nutrition with a central line it is only a matter of time before you will get a line infection, we do everything possible to prevent it, but sometimes it just happens. I was admitted to the hospital with a line infection on Mother's Day leaving daddy to take care of three kids on his own, which went well except during nap time our sneaky middle boy buzzed our beautiful little girls hair. We noticed over the next few weeks after I got out of the hospital that I was extra tired and seemingly more nauseous which we attributed to side effects from the antibiotics and iron infusions I was having at the time. The symptoms were kind of weird to me so at my next doctor visit I told her that it just didn't feel right and since I hadn't had a normal period in so long I thought maybe we should check. She actually said it would be a waste of time because I can't get pregnant with how serious my disease progressed. I got a phone call when I walked into our house being told I was pregnant. It was a miracle and a huge bomb I dropped on Josh because he has called me on his way home to check about the appointment and I wouldn't tell him anything, so he thought I had to go back to the hospital. I still wish I hadn't been in shock myself because a picture of his reaction would have been great to have.
We went to the OB and found out that we were roughly eight weeks along which meant that I was pregnant when they had removed my port in the OR and replaced with a PICC. The next part of this is what changed our lives. They sat us down in the office and strongly suggested we terminate the pregnancy because my body would not be able to support the baby for nine months either I would die, the baby would die, or we both would. My first reaction was anger without even looking at Josh or considering the fact that if I died I would be leaving him with a newborn and no help, but I couldn't believe that they wanted me to kill a miracle that God gave me. The docs switched from speaking to me to Josh saying he was the one who would have to convince me or he could lose me. Neither one of us would budge...this baby was coming in nine months or it was in God's hands. At 11 weeks pregnant they did surgery to put another j tube in because it was less of a risk than my line. I had a very hard time with the surgery leaving Josh once again completely in caregiver mode. I was put on bedrest, he was cleaning out vomit bins, and so much more. He did it all for nine months to help make sure Damien and I would be ok. He has only recently told me how scared he was during that time period esp since we were told that the pregnancy would most likely make my disease worse, but we faced it together like everything else and on February 17, 2011 Firefly came into this world weighing in at six pounds ten ounces and perfectly healthy. The pregnancy had taken a toll on my body, that we now know was not temporary as we had hoped.
It has been almost three years since our miracle came in this world and I can say that neither of us regret the choice to allow our miracle to happen because he makes us smile even in some of our darkest moments. Seeing now what the years of being sick have done to Josh I can see that my disease has not only impacted me. Yes, I'm the one that goes through the pain and has lost my quality of life, but he has to watch the woman he fell in love with slip away and there is very little he can do to stop it. I hear him on the phone with doctors, lawyers, and anyone who will listen to try and get me better care. He holds me when I cry about being scared of dying while holding himself together thinking he can't lose his butterfly because no matter how much we've argued over the years we have always been meant for each other there are no other puzzle pieces out there that would match what we have. I've watched him in pain still doing everything for me driving over a hundred miles round trip to doctor's appointments, pushing me in my wheelchair, forcing me to wear my masks, keeping nurses up on the fact that my wt is never to be told or discussed with me, and that doesn't include the multiple ER trips after he has been working all day and just wants to rest.
It is tough being sick, but I think those of us who are sick need to realize that it can be just as tough on the people who take care of us, love us, and fight for us. My husband has shown me what true love is, caring for me all these years when he could have left at any moment and found a woman who isn't broken and sick. He has stayed when I've pushed him away, closed myself off to the world because I wanted to feel sorry for myself. Living with someone who gets overly exhausted just taking a bath is rough. We are both still young, young enough to be going to concerts and enjoying life with our son. We still have a great family, but it breaks my heart that when we go do things together my son rides on my lap in the wheelchair. He doesn't know the difference because he doesn't know mommy as anything but being a sick mommy, and he is the best little boy about it never messing with anything he isn't suppose to medical supply wise. I think the main reason I wrote this is to remind myself and if anyone else that reads this how important it is to stop and think about the people in your life. My husband gave up his own needs to fight for me, he has devoted himself to being a wonderful father and saving my life. You know a man truly loves you when you accidently dump a whole cup of stomach contents on him while he is sleeping and he doesn't get angry. Think about who is there for you when you open your eyes after surgery, holds your hand during painful procedures, and remember that watching you in pain and being helpless to stop it hurts them too. I love my husband for giving me his heart and always putting his family over himself, there aren't a lot of people who do that these days. We've lived through some tough times not just me being sick and we always pull through together and I know that with him in my corner I have a really good chance at winning this fight.
Most people know our story, how he helped me out of the darkness of my eating disorder and self harm and was there every step of the way as I began the long road to recovery. As my recovery from anorexia and self harm was becoming pretty firm the gastroparesis reared its ugly head causing me to get sicker. We had only been together a few months before I stopped tolerating tube feeds. He sat in the ER with me more times than I can count listening to the surgeons telling us it was the disease progressing and they couldn't do anything about it. When I ended up with swine flu he practically carried me to the ER because we didn't have a car so we had to find buses to get everywhere back then. I was put in isolation and a PICC line placed to start TPN. At this point Josh learned everything from dressing changes to setting up the infusion. At this point I was sure he was going to head for the hills because it wasn't like we were married, he didn't have to sign on to take care of a sick woman. His love never faltered though even on days when I wanted to give up he was there smiling and spiking another two liter bag of TPN.
After a month insurance decided that they weren't going to pay for IV nutrition anymore because I had become more stable. Josh watched as I began to crash again, getting so weak I couldn't even walk to the bathroom or shower without his help. During that time I selfishly could only think of how this disease was unfair and throwing myself little pity parties not even thinking about the man who was devoting his every moment to take care of me, giving up his whole life to clean up puke, spending nights sleeping on the floor of the emergency room, and holding me while watching a chick flick rather than going out on the town. He did it without complaining and he became my voice as I got weaker. He argued with doctors and Medicaid all the while dealing with my childish "why me" crap. He would just remind me that we were like Johnny and June and would get through it together, and when I thought he was done with me he proved me wrong by getting down on one knee in our bedroom asking me to marry him. A few days after we got engaged my IV nutrition was approved long term, we were moving into a nice place where his kids (I consider them mine too) could stay with us, and though I was still sick we were doing much better and facing every challenge that came our way together. We had no idea where life was headed.
When you are on IV nutrition with a central line it is only a matter of time before you will get a line infection, we do everything possible to prevent it, but sometimes it just happens. I was admitted to the hospital with a line infection on Mother's Day leaving daddy to take care of three kids on his own, which went well except during nap time our sneaky middle boy buzzed our beautiful little girls hair. We noticed over the next few weeks after I got out of the hospital that I was extra tired and seemingly more nauseous which we attributed to side effects from the antibiotics and iron infusions I was having at the time. The symptoms were kind of weird to me so at my next doctor visit I told her that it just didn't feel right and since I hadn't had a normal period in so long I thought maybe we should check. She actually said it would be a waste of time because I can't get pregnant with how serious my disease progressed. I got a phone call when I walked into our house being told I was pregnant. It was a miracle and a huge bomb I dropped on Josh because he has called me on his way home to check about the appointment and I wouldn't tell him anything, so he thought I had to go back to the hospital. I still wish I hadn't been in shock myself because a picture of his reaction would have been great to have.
We went to the OB and found out that we were roughly eight weeks along which meant that I was pregnant when they had removed my port in the OR and replaced with a PICC. The next part of this is what changed our lives. They sat us down in the office and strongly suggested we terminate the pregnancy because my body would not be able to support the baby for nine months either I would die, the baby would die, or we both would. My first reaction was anger without even looking at Josh or considering the fact that if I died I would be leaving him with a newborn and no help, but I couldn't believe that they wanted me to kill a miracle that God gave me. The docs switched from speaking to me to Josh saying he was the one who would have to convince me or he could lose me. Neither one of us would budge...this baby was coming in nine months or it was in God's hands. At 11 weeks pregnant they did surgery to put another j tube in because it was less of a risk than my line. I had a very hard time with the surgery leaving Josh once again completely in caregiver mode. I was put on bedrest, he was cleaning out vomit bins, and so much more. He did it all for nine months to help make sure Damien and I would be ok. He has only recently told me how scared he was during that time period esp since we were told that the pregnancy would most likely make my disease worse, but we faced it together like everything else and on February 17, 2011 Firefly came into this world weighing in at six pounds ten ounces and perfectly healthy. The pregnancy had taken a toll on my body, that we now know was not temporary as we had hoped.
It has been almost three years since our miracle came in this world and I can say that neither of us regret the choice to allow our miracle to happen because he makes us smile even in some of our darkest moments. Seeing now what the years of being sick have done to Josh I can see that my disease has not only impacted me. Yes, I'm the one that goes through the pain and has lost my quality of life, but he has to watch the woman he fell in love with slip away and there is very little he can do to stop it. I hear him on the phone with doctors, lawyers, and anyone who will listen to try and get me better care. He holds me when I cry about being scared of dying while holding himself together thinking he can't lose his butterfly because no matter how much we've argued over the years we have always been meant for each other there are no other puzzle pieces out there that would match what we have. I've watched him in pain still doing everything for me driving over a hundred miles round trip to doctor's appointments, pushing me in my wheelchair, forcing me to wear my masks, keeping nurses up on the fact that my wt is never to be told or discussed with me, and that doesn't include the multiple ER trips after he has been working all day and just wants to rest.
It is tough being sick, but I think those of us who are sick need to realize that it can be just as tough on the people who take care of us, love us, and fight for us. My husband has shown me what true love is, caring for me all these years when he could have left at any moment and found a woman who isn't broken and sick. He has stayed when I've pushed him away, closed myself off to the world because I wanted to feel sorry for myself. Living with someone who gets overly exhausted just taking a bath is rough. We are both still young, young enough to be going to concerts and enjoying life with our son. We still have a great family, but it breaks my heart that when we go do things together my son rides on my lap in the wheelchair. He doesn't know the difference because he doesn't know mommy as anything but being a sick mommy, and he is the best little boy about it never messing with anything he isn't suppose to medical supply wise. I think the main reason I wrote this is to remind myself and if anyone else that reads this how important it is to stop and think about the people in your life. My husband gave up his own needs to fight for me, he has devoted himself to being a wonderful father and saving my life. You know a man truly loves you when you accidently dump a whole cup of stomach contents on him while he is sleeping and he doesn't get angry. Think about who is there for you when you open your eyes after surgery, holds your hand during painful procedures, and remember that watching you in pain and being helpless to stop it hurts them too. I love my husband for giving me his heart and always putting his family over himself, there aren't a lot of people who do that these days. We've lived through some tough times not just me being sick and we always pull through together and I know that with him in my corner I have a really good chance at winning this fight.
Sunday, October 13, 2013
Pinktober
This is one of those blog posts that I've debated writing because I figured someone would lynch me because I dare attack Pinktober. If you don't know what that means, October is Breast Cancer Awareness month where everything that is not already Pink year round gets even pinker and all the stores start feeding into people if they by Pink their contribution will go to fight Breast Cancer...that is not always true please read what you by and the store's policy. Now, before we delve into what I'm about to say please know that I am a full supporter in Breast Cancer Awareness and I have the deepest sympathies for anyone facing this horrible disease, but I think we need to realize that Breast Cancer isn't the only debilitating disease out there, yet one of the only ones who receive adequate awareness.
We were in the ER last night and I took it upon myself between throwing up to ask staff some questions. First was simply, "What do you think when you see someone sporting something pink or a pink ribbon"? Answer was quick, "Breast Cancer". The next was what do you think when you look at me carrying around a lime green pillow pet and lime green blanket with the words "Fight GP" painted on my laptop bag in green and yellow"? The only response was I must like the colors green and yellow, most didn't know what gastroparesis, nor did they know about pseudo obstruction, or what I have is full blown intestinal failure with no ability to absorb food or liquid. These are people that work in hospitals, not the doctors because it is too obvious with them when you bring up the actual diagnosis, but still work around sick people all day every day. Most of them were sporting pink shirts, pens, mouse pads, car keys, even a few with pink hair streaks, and not one lime green or yellow anywhere. Most couldn't even name awareness ribbons when asked besides pink for breast cancer and red for AIDS. None knew that the NEDA heart on my wrist is the recovery symbol of an eating disorder and they couldn't name not one other ribbon to support any other cancer or disease besides breast cancer...anyone else see a problem with that?
Those of us who proudly sport our green for our disease are often over looked because no one gets the disease so I'm going to break it down for you the best I can. Have you ever had one of those stomach flus that keep you in bed for about a week? I mean the kind that leave you throwing up in your spaghetti pot because the bathroom is too far, you smell food and you dry heave, and then you get the runs where you race to the bathroom hoping you can not puke during that awful activity. Your friends, spouse, parents, whoever find you in the bathroom clutching the toilet saying that you are going to die...everyone has been there at some point. You lay in bed for a few days and things get better, less begging for death while clutching the toilet, you are able to keep in water/Gatorade, then comes the soup and eventually you are feeling well enough to eat a meal. Your misery is over and you can go back to your life, work, parties, school, or whatever you do. What if that misery never stopped, what if everyday you had to feel like that, and you had to push yourself to keep going?
There isn't a day that goes by that I don't run to the bathroom to throw up if I'm lucky enough to get there, or run to visit the bathroom for other reasons, my stomach churns without relent, my purse contains bottles of meds, syringes, extra clothes, and vomit bags. I am kept alive by a IV line, a central line known as a Hickman in my chest, everything that I need for medicine has to be put directly into my intestines with a prayer that we won't lose it, when I'm not throwing up the normal way I am either venting it out a tube in my stomach or watching it pour out a hole that ruins my favorite clothes. By the time I was twenty three they had removed all but three percent of my stomach and declared I would never eat like a normal person again...tubes and IV lines would be my life. I've had hundreds of surgeries and procedures, spent countless hours in emergency rooms, and even more laying in the hospital because of sepsis (blood infection), recovering from surgery, renal failure, heart problems, blood problems, and all complications of malnutrition because my body won't do what yours does without question. I'm twenty seven years old with a miraculous little two year old who was never suppose to live, we were never suppose to survive the pregnancy and by God's grace we did only for my disease to get worse. I'm pretty much dying now, kept alive by medical intervention, if it were taken away I would be gone. My hope is maybe a five organ transplant at this point, but there is a good chance my son will grow up without a mother. That is just my story and there are millions more worse that than.
There is no cure for Gastroparesis, there are treatments that barely help. Some people will respond to diet changes and meds, but there are quite a few severe cases requiring surgery, feeding tubes, IV nutrition, and other stuff. I've lost my ability to walk along with very close friends of mine, but I am lucky to have a life still. GP goes after all age groups, we've lost teenagers, kids, it doesn't discriminate against age, but lately we've lost younger women leaving behind babies that will never know their moms and still no research. We don't get a break, we live in pain, nausea, in and out of hospitals, and most of the time try to keep a smile on our face as we do it. We sport our green with no one bothering to take the time to see. People go to Wal-Mart and fill their carts with everything from pink bags of chips to hats, to water bottles, and even saw a pink rifle in the gun section talking about breast cancer awareness. Did you know that all that money you are spending you might want to check the label and with the store to see about how much actually goes to supporting it because in some cases none of it is going to profit research. I hate breast cancer, but I hate even more that I'm losing my friends to a disease that no one is doing a damn thing about while a whole month is given to one disease and it isn't just a month it is ALL YEAR long. I know it is a horrible disease and I hate that people have to suffer, but there are other deadly diseases out there. What about children's cancers...do you by things to donate money to childhood neuroblastoma which takes the life of many kids all the time, cystic fibrosis, leukemia, and many more rare forms of cancer that get maybe a week of awareness that no one bothers to pay attention to. Have you seen a two year old fighting neuroblastoma in the hospital, going through painful treatments and surgeries and still smiling...it is heartbreaking?
Now to something else close to me...I wear a heart on my wrist that is purple and red...the purple being larger than the red. It is the National Eating Disorder Awareness heart representing recovery. Did you know that anorexia has the highest mortality rate for any mental illness out there? Did you know that the age of onset has gotten so low they have had to open centers for children as young as six? Everything changes when you see a little six year old with a yellow tube down her nose because she won't eat. You know that insurance has caused treatment to be put off to the point that there is irreversible damage if not death in the case of someone suffering, causing suicide rates to go up because health isn't available, but during NEDA awareness do you see posters at hospitals or at the local Wal-Mart asking you to support it? We are forgotten until it is your six year old or twenty year old that needs help and the insurance company tells you no and then a few months later you are burying your baby in the ground and no one does anything, hell there is barely awareness in school. What about the orange ribbons for self harm...the act of one person hurting themselves trying to deal with all the pain on the inside, those that you judge thinking your kid could never do it until you find the blood clothing in the hamper or their room. Still no awareness because it makes people uncomfortable.
Believe me I know cancer is a tragedy, but breast cancer isn't the only cancer that deserves awareness. By this point in time women know they need to check for lumps and get them checked and there are places they can go for free unlike most diseases. Maybe I jaded, but I've seen those little kids with tubes down their nose crying over eating some carrots, I've seen the cuts on my own flesh just trying to survive, I'm lose friends and almost myself to suicide and anorexia, and I lost more friends everyday to the disease that is killing me...Gastroparesis. I go to the hospital and it is pink everywhere and not one person knows anything about raising awareness for everything else diseases people don't know about or don't want to know about. Nothing changes without awareness. Breast cancer patients can find treatment now, they have made great strides and unfortunately we still lose wonderful woman to the fight, but we forget those of us fighting in the lime green throwing up and crying while still fighting a disease that there is little research being done given there is no funding. We hold each other up because we are all we have. Please don't focus on one disease, we have to raise awareness for all of them and if we give them all a month were that is all anyone focus' on and we by into the lie that everytime you buy pink you are making a donation we are naïve. There are not enough months out there to donate a whole one to ever disease we have to fight together and keep our eyes open. Breast cancer takes moms away from their kids, but lately I have heard of three moms under thirty dying of GP related problems like a line infection, we go to bed every night not knowing if tomorrow is going to bring us a line infection or surgery we can't beat, and they had young babies...babies who won't even know who their mommy's are and no one even knows what it means when you see us decked out in our lime green on Fridays.
Not trying to be disrespectful, but it had to be said.
We were in the ER last night and I took it upon myself between throwing up to ask staff some questions. First was simply, "What do you think when you see someone sporting something pink or a pink ribbon"? Answer was quick, "Breast Cancer". The next was what do you think when you look at me carrying around a lime green pillow pet and lime green blanket with the words "Fight GP" painted on my laptop bag in green and yellow"? The only response was I must like the colors green and yellow, most didn't know what gastroparesis, nor did they know about pseudo obstruction, or what I have is full blown intestinal failure with no ability to absorb food or liquid. These are people that work in hospitals, not the doctors because it is too obvious with them when you bring up the actual diagnosis, but still work around sick people all day every day. Most of them were sporting pink shirts, pens, mouse pads, car keys, even a few with pink hair streaks, and not one lime green or yellow anywhere. Most couldn't even name awareness ribbons when asked besides pink for breast cancer and red for AIDS. None knew that the NEDA heart on my wrist is the recovery symbol of an eating disorder and they couldn't name not one other ribbon to support any other cancer or disease besides breast cancer...anyone else see a problem with that?
Those of us who proudly sport our green for our disease are often over looked because no one gets the disease so I'm going to break it down for you the best I can. Have you ever had one of those stomach flus that keep you in bed for about a week? I mean the kind that leave you throwing up in your spaghetti pot because the bathroom is too far, you smell food and you dry heave, and then you get the runs where you race to the bathroom hoping you can not puke during that awful activity. Your friends, spouse, parents, whoever find you in the bathroom clutching the toilet saying that you are going to die...everyone has been there at some point. You lay in bed for a few days and things get better, less begging for death while clutching the toilet, you are able to keep in water/Gatorade, then comes the soup and eventually you are feeling well enough to eat a meal. Your misery is over and you can go back to your life, work, parties, school, or whatever you do. What if that misery never stopped, what if everyday you had to feel like that, and you had to push yourself to keep going?
There isn't a day that goes by that I don't run to the bathroom to throw up if I'm lucky enough to get there, or run to visit the bathroom for other reasons, my stomach churns without relent, my purse contains bottles of meds, syringes, extra clothes, and vomit bags. I am kept alive by a IV line, a central line known as a Hickman in my chest, everything that I need for medicine has to be put directly into my intestines with a prayer that we won't lose it, when I'm not throwing up the normal way I am either venting it out a tube in my stomach or watching it pour out a hole that ruins my favorite clothes. By the time I was twenty three they had removed all but three percent of my stomach and declared I would never eat like a normal person again...tubes and IV lines would be my life. I've had hundreds of surgeries and procedures, spent countless hours in emergency rooms, and even more laying in the hospital because of sepsis (blood infection), recovering from surgery, renal failure, heart problems, blood problems, and all complications of malnutrition because my body won't do what yours does without question. I'm twenty seven years old with a miraculous little two year old who was never suppose to live, we were never suppose to survive the pregnancy and by God's grace we did only for my disease to get worse. I'm pretty much dying now, kept alive by medical intervention, if it were taken away I would be gone. My hope is maybe a five organ transplant at this point, but there is a good chance my son will grow up without a mother. That is just my story and there are millions more worse that than.
There is no cure for Gastroparesis, there are treatments that barely help. Some people will respond to diet changes and meds, but there are quite a few severe cases requiring surgery, feeding tubes, IV nutrition, and other stuff. I've lost my ability to walk along with very close friends of mine, but I am lucky to have a life still. GP goes after all age groups, we've lost teenagers, kids, it doesn't discriminate against age, but lately we've lost younger women leaving behind babies that will never know their moms and still no research. We don't get a break, we live in pain, nausea, in and out of hospitals, and most of the time try to keep a smile on our face as we do it. We sport our green with no one bothering to take the time to see. People go to Wal-Mart and fill their carts with everything from pink bags of chips to hats, to water bottles, and even saw a pink rifle in the gun section talking about breast cancer awareness. Did you know that all that money you are spending you might want to check the label and with the store to see about how much actually goes to supporting it because in some cases none of it is going to profit research. I hate breast cancer, but I hate even more that I'm losing my friends to a disease that no one is doing a damn thing about while a whole month is given to one disease and it isn't just a month it is ALL YEAR long. I know it is a horrible disease and I hate that people have to suffer, but there are other deadly diseases out there. What about children's cancers...do you by things to donate money to childhood neuroblastoma which takes the life of many kids all the time, cystic fibrosis, leukemia, and many more rare forms of cancer that get maybe a week of awareness that no one bothers to pay attention to. Have you seen a two year old fighting neuroblastoma in the hospital, going through painful treatments and surgeries and still smiling...it is heartbreaking?
Now to something else close to me...I wear a heart on my wrist that is purple and red...the purple being larger than the red. It is the National Eating Disorder Awareness heart representing recovery. Did you know that anorexia has the highest mortality rate for any mental illness out there? Did you know that the age of onset has gotten so low they have had to open centers for children as young as six? Everything changes when you see a little six year old with a yellow tube down her nose because she won't eat. You know that insurance has caused treatment to be put off to the point that there is irreversible damage if not death in the case of someone suffering, causing suicide rates to go up because health isn't available, but during NEDA awareness do you see posters at hospitals or at the local Wal-Mart asking you to support it? We are forgotten until it is your six year old or twenty year old that needs help and the insurance company tells you no and then a few months later you are burying your baby in the ground and no one does anything, hell there is barely awareness in school. What about the orange ribbons for self harm...the act of one person hurting themselves trying to deal with all the pain on the inside, those that you judge thinking your kid could never do it until you find the blood clothing in the hamper or their room. Still no awareness because it makes people uncomfortable.
Believe me I know cancer is a tragedy, but breast cancer isn't the only cancer that deserves awareness. By this point in time women know they need to check for lumps and get them checked and there are places they can go for free unlike most diseases. Maybe I jaded, but I've seen those little kids with tubes down their nose crying over eating some carrots, I've seen the cuts on my own flesh just trying to survive, I'm lose friends and almost myself to suicide and anorexia, and I lost more friends everyday to the disease that is killing me...Gastroparesis. I go to the hospital and it is pink everywhere and not one person knows anything about raising awareness for everything else diseases people don't know about or don't want to know about. Nothing changes without awareness. Breast cancer patients can find treatment now, they have made great strides and unfortunately we still lose wonderful woman to the fight, but we forget those of us fighting in the lime green throwing up and crying while still fighting a disease that there is little research being done given there is no funding. We hold each other up because we are all we have. Please don't focus on one disease, we have to raise awareness for all of them and if we give them all a month were that is all anyone focus' on and we by into the lie that everytime you buy pink you are making a donation we are naïve. There are not enough months out there to donate a whole one to ever disease we have to fight together and keep our eyes open. Breast cancer takes moms away from their kids, but lately I have heard of three moms under thirty dying of GP related problems like a line infection, we go to bed every night not knowing if tomorrow is going to bring us a line infection or surgery we can't beat, and they had young babies...babies who won't even know who their mommy's are and no one even knows what it means when you see us decked out in our lime green on Fridays.
Not trying to be disrespectful, but it had to be said.
Tuesday, October 1, 2013
A Tough Topic
The other day I was messing around on YouTube and I came across the Rascal Flats song "Why", which is a song about suicide. I scrolled down to the comments and saw something that seriously disturbed me. A young girl made a comment that she was struggling with thoughts of hurting herself, she was putting herself out there into cyber land hoping for some sort of support that she obviously couldn't find at home. What she got were a few supportive responses trying to convince her that life is worth living and to keep fighting, but what stood out were the comments tearing her down. This girl was fifteen years old and people were telling her things ranging from an eternity in hell to flat out telling her to do it. They didn't know her or what she had been through, but they were all willing to pass judgment on her. She was a kid, vulnerable and reaching out to the only thing she thought she could. I've been thinking about it since I saw it, she was a random user name on YouTube with no way of finding out who she is in real life. I've prayed that she found the strength to keep fighting and reach out to someone in her real life to help her. It really hit home to me, reminding me of the person I was just a few years ago. I went back and forth about blogging about it, not sure if I wanted to share the details of my own struggles, but as I sat here unable to sleep tonight I was reminded that I told myself I would be completely raw on here and maybe I can help one person realize that life is worth fighting for.
It is no secret that I struggled with anorexia and self harm from the age of fifteen until I was able to find my back up that mountain at twenty three. Despite the fact that I was starving myself and cutting to deal with my feelings I was never really trying to die, in my own way I was trying to survive. It wasn't until 2007 that I began that downward spiral that ended with me in a graveyard. In April of 2007 my first serious boyfriend who I thought I loved and trusted raped me taking what was only suppose to be mine to give...my virginity. I was devastated and ashamed too scared to tell anyone what happened. I held what happened deep inside for almost two weeks before I fell apart to a close friend of mine. For those two weeks I stopped eating, I barely drank anything, tried to bleed enough to cover what was tearing me apart on the inside, and sleeping on the floor of my bedroom unable to even sit on my own bed. When I broke down to my friend, letting that secret escape it all became real. She went with me to my doctor and stayed with me as I told him that I wanted to die, that I couldn't eat because having anything inside of me made my skin crawl, and she stayed when I was admitted to the hospital and a tube was shoved down my nose to nourish me. My doctor made the call to my dad and step mom telling them my shameful secret, and the reaction sent me even faster down the rabbit hole. My dad, the man I thought would kill anyone who hurt me never acknowledged that it happened and my step mom's reaction was it never would have happened if I hadn't broken the rules and had my boyfriend over while they were out of town. At this point the guy was stalking me and I filed a police report and an order of protection. I lived in a women's shelter for over a month, faced the monster in court with a victim advocate standing with me rather than my parents, I made the "cold call" where a detective bugged my phone and I called him and he admitted what he did on tape, and I was alone when the prosecutor called to tell me that he was very sorry about what happened, but even with the confession on tape there was no physical evidence and he didn't think he could get a whole jury to convict. He is still free today, living a normal life never thinking of me while I still have raging night terrors that leave me kicking and screaming as a man that loves me tries to pull me out of it, holding me until I come back to the present. I didn't know when it happened that the rape was just the beginning of my world crashing down.
For seven months after the rape, living in the shelter, facing him in court for the restraining order, and walking around wondering if he was there I convinced myself that things couldn't get worse...then the phone rang. In November I got an emergency call from my step dad telling me that my mom was in the intensive care unit unable to breathe for herself with her liver and kidneys shutdown from years of being unable to beat her alcoholism. She laid there for a month unable to improve or get the liver she so desperately needed (alcoholism means you have to be clean at least a year before you can be listed for transplant). On December 7th I got the call that they were going to take her off life support, I was two hours away with no way to get to the hospital. At 4:30 AM on December 8, 2007 my mom died alone with no one there holding her and helping her know that she was loved. Four days later I stood in front of her coffin and read the eulogy and held my five year old sister as they put our mom in the ground. As I held Kelly's hand I knew I had to be strong, not just for her but for my grandma and my step dad yet on the inside I felt like more of me was dying.
The next year was a blur...I met a man who was nothing but a crack head, convinced myself that I loved him and we got married. The only sane act of that year was not signing the marriage license which was a blessing given the character of the man. I'm pretty sure I was as clinically depressed as one can get by Spring of 2009, the insanity of the previous two years had turned me into a shell bent on self destruction. The first time I swallowed all of those pills I don't think I was trying to kill myself I just wanted to sleep so I didn't have to feel all the pain, sadness and anger raging inside of me. I spent three days in the hospital and they sent me back home on more sleep and anxiety medications than any person should ever have in the house at a time. It wasn't even a month after that when my need for sleep turned into a need to disappear. I didn't think about it for weeks or days before I did it, hell I didn't even intend to do it that morning when I woke up. But that sunny June day I pushed enough meds through my J tube directly into my intestine to ensure that the sun wouldn't come up for me again. It was a miracle that a facebook friend states away noticed something was wrong when she txt me and made sure that a group of EMTs and Firefighters burst into my apartment. I can't remember much...the EMT smacked me in the face when I stopped breathing, there were a bunch of doctors everywhere, and then I came to in the intensive care unit covered in wires and tubes. I realized at that point that I didn't want to die and how close I had been to actually succeeding.
I shared that because it is really easy to pass judgment on someone who has attempted suicide or expressed thoughts of suicidal ideation. They call them selfish cowards for quitting and leaving behind their loved ones. In my head dying was a way to protect my family, I had hurt them enough, put them through years of torture as they tried to understand why I wouldn't eat and why I would take razor blades to my flesh. I was ashamed of being raped, ashamed of the "marriage" to a bad man, I blamed myself for my mom's death thinking if I could have been better she wouldn't have needed to drink and would still be alive, and I lost hope that life could be anything but pain. It hurt so bad just to breathe and I didn't know how to reach out or how to ask for help mainly because I feared the response that poor girl got on YouTube even worse I feared it from the people who truly loved and cared about me. The hurt little girl trapped way down inside my twenty three year old body wanted to hear from her daddy that she wasn't dirty for what that guy did to her, it wasn't her fault, and mainly wanted it to be real to others besides her. She had been hurt and no one stood up for her and it made the shame that much worse. That same little girl inside of me wanted her dad to be there holding her as she watched her mother get put into the earth like she had been holding her five year old sister. It was like everyone pretended none of it happened, but the problem was I couldn't forget and I still can't. If I died I wouldn't have to see the images of him in my head or her laying in that hospital bed thrashing around instinctively trying to pull her wrists out of the restraints.
I think about that day a lot and I am so happy that I didn't succeed, I was given another chance at life. I lied to myself awhile after that saying it was a mistake, I wasn't paying attention, or I just wanted to sleep. Four years later I see it for what it was, I tried to commit suicide and I knew what I was doing. Life became too painful to keep going and I was convinced I was removing a burden out of everyone's lives, no more anorexic Andrea bleeding and being crazy causing upheaval in everyone's lives. During that time I didn't need to hear I was stupid, going to burn in hell, or to have someone antagonizing me acting like I wouldn't do it especially random strangers like on that YouTube video. Suicide is a tragedy, not only does it rob someone of their life, but all the questions left for the people who loved them. You get to spend the rest of your life wondering if you couldn't have done something to save them, and will never have peace. It is a tough subject to approach and it has to be done very carefully. This day and age the age of people killing themselves is dropping dramatically, 14 and 15 year olds are ending their lives before they begin. The only way to lower the number of suicides that happen each day is for people to show compassion rather than judgment. I was saved by a girl I've never even heard her voice, but she spoke up and followed her gut and I am here because of it. I've been the person who has lost all hope and thinks death is the only way out and today I cherish everyday I have to watch my toddler grow and smile. I want to live with everything in, which makes it even more of a tragedy when you think about those who succeed because with help they could be here today appreciating their life. I know it is cliché but the organization TWLOHA had it right when they said, "Love is the Movement".
It is no secret that I struggled with anorexia and self harm from the age of fifteen until I was able to find my back up that mountain at twenty three. Despite the fact that I was starving myself and cutting to deal with my feelings I was never really trying to die, in my own way I was trying to survive. It wasn't until 2007 that I began that downward spiral that ended with me in a graveyard. In April of 2007 my first serious boyfriend who I thought I loved and trusted raped me taking what was only suppose to be mine to give...my virginity. I was devastated and ashamed too scared to tell anyone what happened. I held what happened deep inside for almost two weeks before I fell apart to a close friend of mine. For those two weeks I stopped eating, I barely drank anything, tried to bleed enough to cover what was tearing me apart on the inside, and sleeping on the floor of my bedroom unable to even sit on my own bed. When I broke down to my friend, letting that secret escape it all became real. She went with me to my doctor and stayed with me as I told him that I wanted to die, that I couldn't eat because having anything inside of me made my skin crawl, and she stayed when I was admitted to the hospital and a tube was shoved down my nose to nourish me. My doctor made the call to my dad and step mom telling them my shameful secret, and the reaction sent me even faster down the rabbit hole. My dad, the man I thought would kill anyone who hurt me never acknowledged that it happened and my step mom's reaction was it never would have happened if I hadn't broken the rules and had my boyfriend over while they were out of town. At this point the guy was stalking me and I filed a police report and an order of protection. I lived in a women's shelter for over a month, faced the monster in court with a victim advocate standing with me rather than my parents, I made the "cold call" where a detective bugged my phone and I called him and he admitted what he did on tape, and I was alone when the prosecutor called to tell me that he was very sorry about what happened, but even with the confession on tape there was no physical evidence and he didn't think he could get a whole jury to convict. He is still free today, living a normal life never thinking of me while I still have raging night terrors that leave me kicking and screaming as a man that loves me tries to pull me out of it, holding me until I come back to the present. I didn't know when it happened that the rape was just the beginning of my world crashing down.
For seven months after the rape, living in the shelter, facing him in court for the restraining order, and walking around wondering if he was there I convinced myself that things couldn't get worse...then the phone rang. In November I got an emergency call from my step dad telling me that my mom was in the intensive care unit unable to breathe for herself with her liver and kidneys shutdown from years of being unable to beat her alcoholism. She laid there for a month unable to improve or get the liver she so desperately needed (alcoholism means you have to be clean at least a year before you can be listed for transplant). On December 7th I got the call that they were going to take her off life support, I was two hours away with no way to get to the hospital. At 4:30 AM on December 8, 2007 my mom died alone with no one there holding her and helping her know that she was loved. Four days later I stood in front of her coffin and read the eulogy and held my five year old sister as they put our mom in the ground. As I held Kelly's hand I knew I had to be strong, not just for her but for my grandma and my step dad yet on the inside I felt like more of me was dying.
The next year was a blur...I met a man who was nothing but a crack head, convinced myself that I loved him and we got married. The only sane act of that year was not signing the marriage license which was a blessing given the character of the man. I'm pretty sure I was as clinically depressed as one can get by Spring of 2009, the insanity of the previous two years had turned me into a shell bent on self destruction. The first time I swallowed all of those pills I don't think I was trying to kill myself I just wanted to sleep so I didn't have to feel all the pain, sadness and anger raging inside of me. I spent three days in the hospital and they sent me back home on more sleep and anxiety medications than any person should ever have in the house at a time. It wasn't even a month after that when my need for sleep turned into a need to disappear. I didn't think about it for weeks or days before I did it, hell I didn't even intend to do it that morning when I woke up. But that sunny June day I pushed enough meds through my J tube directly into my intestine to ensure that the sun wouldn't come up for me again. It was a miracle that a facebook friend states away noticed something was wrong when she txt me and made sure that a group of EMTs and Firefighters burst into my apartment. I can't remember much...the EMT smacked me in the face when I stopped breathing, there were a bunch of doctors everywhere, and then I came to in the intensive care unit covered in wires and tubes. I realized at that point that I didn't want to die and how close I had been to actually succeeding.
I shared that because it is really easy to pass judgment on someone who has attempted suicide or expressed thoughts of suicidal ideation. They call them selfish cowards for quitting and leaving behind their loved ones. In my head dying was a way to protect my family, I had hurt them enough, put them through years of torture as they tried to understand why I wouldn't eat and why I would take razor blades to my flesh. I was ashamed of being raped, ashamed of the "marriage" to a bad man, I blamed myself for my mom's death thinking if I could have been better she wouldn't have needed to drink and would still be alive, and I lost hope that life could be anything but pain. It hurt so bad just to breathe and I didn't know how to reach out or how to ask for help mainly because I feared the response that poor girl got on YouTube even worse I feared it from the people who truly loved and cared about me. The hurt little girl trapped way down inside my twenty three year old body wanted to hear from her daddy that she wasn't dirty for what that guy did to her, it wasn't her fault, and mainly wanted it to be real to others besides her. She had been hurt and no one stood up for her and it made the shame that much worse. That same little girl inside of me wanted her dad to be there holding her as she watched her mother get put into the earth like she had been holding her five year old sister. It was like everyone pretended none of it happened, but the problem was I couldn't forget and I still can't. If I died I wouldn't have to see the images of him in my head or her laying in that hospital bed thrashing around instinctively trying to pull her wrists out of the restraints.
I think about that day a lot and I am so happy that I didn't succeed, I was given another chance at life. I lied to myself awhile after that saying it was a mistake, I wasn't paying attention, or I just wanted to sleep. Four years later I see it for what it was, I tried to commit suicide and I knew what I was doing. Life became too painful to keep going and I was convinced I was removing a burden out of everyone's lives, no more anorexic Andrea bleeding and being crazy causing upheaval in everyone's lives. During that time I didn't need to hear I was stupid, going to burn in hell, or to have someone antagonizing me acting like I wouldn't do it especially random strangers like on that YouTube video. Suicide is a tragedy, not only does it rob someone of their life, but all the questions left for the people who loved them. You get to spend the rest of your life wondering if you couldn't have done something to save them, and will never have peace. It is a tough subject to approach and it has to be done very carefully. This day and age the age of people killing themselves is dropping dramatically, 14 and 15 year olds are ending their lives before they begin. The only way to lower the number of suicides that happen each day is for people to show compassion rather than judgment. I was saved by a girl I've never even heard her voice, but she spoke up and followed her gut and I am here because of it. I've been the person who has lost all hope and thinks death is the only way out and today I cherish everyday I have to watch my toddler grow and smile. I want to live with everything in, which makes it even more of a tragedy when you think about those who succeed because with help they could be here today appreciating their life. I know it is cliché but the organization TWLOHA had it right when they said, "Love is the Movement".
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