The last few days have been difficult to say the least. They did the surgery on Thursday and as soon as I woke up I knew things hadn't gone the easy way. The surgeon said that it became a very complicated operation involving incisions because my stomach is much smaller than they expected and it was stuck under my colon. I've been on a twenty four hour gravity vent since surgery to vent the G tube. The surgeon said that we could attempt things through the G port but they would most likely cause horrible pain and needing to vent immediately. My J tube port is higher up than before so they are hoping they can maybe get tube feeds going soon.
The pain has been completely unbearable, had to be on oxygen after surgery because the tube is placed so high up I can't take a deep breath without horrible pain. The docs didn't help with pain relief at all...my surgeon said if he would have been there my pain would have been taken care of. He left my other stoma site open because if this g/j doesn't work he wants to have a place to go in rather than open a fresh site, but he also said that if feeds fail this time then the docs really need to understand we've exhausted all of our efforts and should start TPN. He said he doesn't understand why they are taking the approach they are taking to everything because it is very dangerous for me. He said as soon as he saw me in clinic he knew that I needed surgery asap to get everything started that I am in desperate need of nutrition.
We have also started doing some research into the last few months while the medicine docs have said my labs were okay and all that. I've read over all my tests and lab reports over the last few months and my albumin has been low enough to start TPN for the last month in a half, my hemoglobin just came back as 8.1 after surgery which explains weakness, and my CTs have shown multiple issues also. All this time they have been focusing on the number on the scale while my body is falling a part. I don't understand how this happens. It is just like when someone with an eating disorder is trying to get treatment and all the insurance company has to say is the wt is low enough...weight is not an indication of one's health. People with eating disorders die at all different wts, underweight, normal wt, and even overweight and it is the same with gastroparesis.
People are dying everyday because of ignorance on the part of doctors. This has to stop, we have to spread awareness and help things get better. Right now my pain meds are kicking in so I'm a little spacey time to sleep. I will hopefully write a blog that is more useful tomorrow, have a topic in mind already!
Sunday, March 17, 2013
Wednesday, March 13, 2013
Past and regrets
As my health has gotten worse I've found myself reflecting a lot on the past the good, the bad, and the ugly. I couldn't say what was going on at home, I just wanted to be perfect and make her proud and in the process I managed to destroy myself. In the process of ruining myself I ruined others and lost people who I truly cared about and I believe cared about me as much as they could, as long as they could. I couldn't let go of my anorexia, I couldn't stop cutting, and I couldn't explain why. Everyone yelled and pleaded for me to "just eat" and I wanted so badly to make them happy, but I couldn't do the one thing they asked of me. I kept pushing people away, the more they tried to help they harder I pushed.
People ask me if I have regrets and the answer is yes and no. I regret the friendships and family relationships I lost. People who meant the world to me won't even answer a facebook message from me and it is no one's fault but mine. I was a puppet and did whatever my anorexia told me to do, convinced myself that drinking fluid would make me fat or out of control. Every week Dr. R tried so hard to breakthrough to me, he knew Andrea was in there somewhere, but it was like every time we got close the anorexia screamed louder. I wish I could mend those friendships my anorexia tore apart and make them understand that I am truly grateful for everything they did for me as long as they could. They had no choice but to leave me to my disease because they had their own lives to live. I wish my family still respected me, but after the things I said and did I can't blame them for their feelings towards me. I regret that I watched my mom lay in the ICU dying and the only thing I could say was I loved her and I hate dinner, I was so selfish I couldn't even tell her I forgave her which I have. I've ruined a lot of good things because my eating disorder...I starved, purged and bled to deal instead of talking and spewed venom and lies at anyone who tried to help me.
I do not, however regret the lessons I've learned from all of this. I've learned that family is something that you don't get to pick, but they are also the ones who keep coming back no matter how many times you burn them. I do not regret my struggle from the bottom back to the top because now I know I am survivor and that my story can help someone before they have to hit the bottom. I also will never regret this road because I have been blessed with the most beautiful little boy I could have ever asked for. I have failed in almost everything in my life except at being is mommy and at this point that seems to be all that matters.
I've spent a lot of time lately focusing on letting go and forgiving. I was so angry with my mom for so long because of what she did and said to me, but she did the best she could while dealing with an addiction she just couldn't kick. I still get angry that she isn't here at the hospital with me holding my hand telling me that everything is going to be okay or that she is holding her beautiful grandson. She wasn't strong enough to survive her addiction and that wasn't my fault or even hers, not everyone can make it back up the mountain. I was angry with my dad for leaving me there and starting a new family while I was just trying to survive, but I never told him about the bruises or the things she would say because she was my mommy and she loved me so much when she was sober, it was just those times were few and far between. I felt like my dad abandoned me, I felt so many things back then and I just couldn't tell anyone so I starved and I bled because I thought I could keep the smile and keep everything perfect and under control. ..obviously it didn't work. When it comes to forgiveness there is one person I have yet to forgive and I don't know if I can after what he took from me. I pray about it, but I just don't know.
I've learned lately that a long life is not a promise, tomorrow isn't a promise, and if the doctors are right it is going to take some serious treatments and procedures to keep me alive another five years. They tell me every infection I get I might not come back from it. With that last hospitalization with my kidneys failing the doc told me it will be a miracle if I live past thirty and that was lucky. It seems so easy for them to stamp an expiration date on me, but I won't take it because I have faith in God and only He knows when I will be gone. I've learned the rewards of not living for just for myself. With whatever time I have left in this world whether it be two days or twenty years I am devoted to helping others who have to deal with the same struggles that I have dealt with, to show them that there is hope and no matter when life seems like it is over and the darkness is all around the sun will come up again and each day is a new start.
I think I learn new things in recovery everyday, I think I am tested and tried, and I think that by the grace of God I am a survivor and keep fighting. I've seen hell and after seeing heaven in my little boy's blue eyes going back just isn't an option ever again. I will never declare myself recovered, I know people believe in full recovery, but I believe it is a battle. I went to the edge as far as I could and it has taken every ounce of strength to come back. She will always be whispering in my ear trying to bring me back and deceive me and I can't turn my back to it. I won't shut up about it because if I help one person in this world then it is all worth it. The past is that past, people say to forget it when that is pretty much impossible...you overcome it, you survive what seems to be unsurvivable. It is okay to have regrets because everyone does, but don't let them rule you. We don't know how much time we have on this planet so each day we have to start over with that clean slate and go from there.
People ask me if I have regrets and the answer is yes and no. I regret the friendships and family relationships I lost. People who meant the world to me won't even answer a facebook message from me and it is no one's fault but mine. I was a puppet and did whatever my anorexia told me to do, convinced myself that drinking fluid would make me fat or out of control. Every week Dr. R tried so hard to breakthrough to me, he knew Andrea was in there somewhere, but it was like every time we got close the anorexia screamed louder. I wish I could mend those friendships my anorexia tore apart and make them understand that I am truly grateful for everything they did for me as long as they could. They had no choice but to leave me to my disease because they had their own lives to live. I wish my family still respected me, but after the things I said and did I can't blame them for their feelings towards me. I regret that I watched my mom lay in the ICU dying and the only thing I could say was I loved her and I hate dinner, I was so selfish I couldn't even tell her I forgave her which I have. I've ruined a lot of good things because my eating disorder...I starved, purged and bled to deal instead of talking and spewed venom and lies at anyone who tried to help me.
I do not, however regret the lessons I've learned from all of this. I've learned that family is something that you don't get to pick, but they are also the ones who keep coming back no matter how many times you burn them. I do not regret my struggle from the bottom back to the top because now I know I am survivor and that my story can help someone before they have to hit the bottom. I also will never regret this road because I have been blessed with the most beautiful little boy I could have ever asked for. I have failed in almost everything in my life except at being is mommy and at this point that seems to be all that matters.
I've spent a lot of time lately focusing on letting go and forgiving. I was so angry with my mom for so long because of what she did and said to me, but she did the best she could while dealing with an addiction she just couldn't kick. I still get angry that she isn't here at the hospital with me holding my hand telling me that everything is going to be okay or that she is holding her beautiful grandson. She wasn't strong enough to survive her addiction and that wasn't my fault or even hers, not everyone can make it back up the mountain. I was angry with my dad for leaving me there and starting a new family while I was just trying to survive, but I never told him about the bruises or the things she would say because she was my mommy and she loved me so much when she was sober, it was just those times were few and far between. I felt like my dad abandoned me, I felt so many things back then and I just couldn't tell anyone so I starved and I bled because I thought I could keep the smile and keep everything perfect and under control. ..obviously it didn't work. When it comes to forgiveness there is one person I have yet to forgive and I don't know if I can after what he took from me. I pray about it, but I just don't know.
I've learned lately that a long life is not a promise, tomorrow isn't a promise, and if the doctors are right it is going to take some serious treatments and procedures to keep me alive another five years. They tell me every infection I get I might not come back from it. With that last hospitalization with my kidneys failing the doc told me it will be a miracle if I live past thirty and that was lucky. It seems so easy for them to stamp an expiration date on me, but I won't take it because I have faith in God and only He knows when I will be gone. I've learned the rewards of not living for just for myself. With whatever time I have left in this world whether it be two days or twenty years I am devoted to helping others who have to deal with the same struggles that I have dealt with, to show them that there is hope and no matter when life seems like it is over and the darkness is all around the sun will come up again and each day is a new start.
I think I learn new things in recovery everyday, I think I am tested and tried, and I think that by the grace of God I am a survivor and keep fighting. I've seen hell and after seeing heaven in my little boy's blue eyes going back just isn't an option ever again. I will never declare myself recovered, I know people believe in full recovery, but I believe it is a battle. I went to the edge as far as I could and it has taken every ounce of strength to come back. She will always be whispering in my ear trying to bring me back and deceive me and I can't turn my back to it. I won't shut up about it because if I help one person in this world then it is all worth it. The past is that past, people say to forget it when that is pretty much impossible...you overcome it, you survive what seems to be unsurvivable. It is okay to have regrets because everyone does, but don't let them rule you. We don't know how much time we have on this planet so each day we have to start over with that clean slate and go from there.
Sunday, March 10, 2013
Gastroparesis Awareness
Think back to the last time you had to stomach flu or food poisoning, remember how the smell or even through of food would send you running to the bathroom retching? Think about how for twenty four hours you lay in your bed thinking the world was ending, declaring you were dying, and that you just couldn't take it anymore. Imagine feeling like that every single day of your life...I do along with millions of other people. We suffer from a disease known as gastroparesis and some also struggle with pseudo obstruction disorder, in short we call it digestive tract paralysis. It is a debilitating condition to which there is no cure and very little awareness. Even people in the medical profession don't understand it so they tell us it is our head because it is also known as an invisible illness, there is no reason as to why our bodies won't allow us to take in nourishment, but we can't.
I was diagnosed in 2008 via an endoscopy and gastric emptying study. I was constantly bloated and couldn't stop throwing up no matter what we tried. We found out the hard way that I was allergic to the medications generally used to help treat the disease and I just kept feeling worse and worse. In early 2009 I went in to see the surgeon to have a j tube put in (had one previously for other reasons) and he told me that he could fix me. He said they discovered that a sleeve or partial gastrectomy could make it to where I could eat again. He said the procedure was originally designed for weight loss and given that I was barely at a normal weight at that point I would have to have a j tube put in as well. He was a doctor and I trusted him...I was wrong. The surgery was the most painful experience I've ever gone through and left me unable to even sip water. He made the procedure irreversible so now I only have five percent of my stomach left.
Eventually, I started having trouble tolerating my tube feedings and having massive amounts of pain. They informed me that my intestines were now beginning to fail and I was suffering from malabsorpton which is not uncommon. I would be admitted to the hospital for them to manage my pain and then sent home for the cycle to start again. Finally, they pulled my tube and put in a central access and began IV nutrition. I had to have a fistula take down to get the stoma site to close. Besides a bout with bad sepsis the TPN did wonders for my energy until I miraculously got pregnant with Damien. At 11 wks along I had my third jejuneostomy. Feeds were still hellishly painful and I had to be on pain medication to keep them high enough for him to grow. by God's grace my son was born perfectly healthy leaving me with dangerously bad labs. Things seemed okay for awhile and then my stoma site started to pour bile, tube feed, or anything I managed to drink orally out filling up an ostomy bag up to three times a night. Eventually, it meant more surgery for another site to be placed which ended up with massive complications.
All in all I've had four jejuneostomies, six different port placements due to infections or malfunction, countless surgeries and painful procedures, many night spent sleeping in the ER, and long hospital admissions. I'm hydrated through the port in my chest and I will be seeing the surgeon on Tuesday to have another fistula take down and we are going to try a G tube rather than J this time since when dumping feeding directly into my intestine is causing rapid emptying with no absorption. There is talk that I will go on TPN for a week or two to get my strength back up and give me some gut rest before we start the new feeds. I am twenty seven years old and can't walk long distances without a walker. I've been told by the docs that if things don't get better or we find a different plan my body isn't going to last another five years. I'm still battling acute kidney failure which I'm hoping gets better before they change the word acute to chronic. Starting on Tuesday I will wear a heart monitor for thirty days to evaluate my rapid heart rates and palpitations. This is just my story, there are many more out there like it, many who are worse off than me.
When we are lucky enough to find a doctor that doesn't tell us it is in our heads there is still not much that can be done. they simply manage symptoms...hydrate us when we are dry, nourish us when we need it, manage pain, and nausea. Going out with friends becomes a huge deal, can we sit close enough to the bathroom just in case I need to run, is there anything I can tolerate on the menu, and the whole time you are sitting there wishing you could eat the food that everyone around you is. We carry backpacks with tube feed and TPN in them while trying to live as normal life as possible. There are days when we are too sick and weak to get out of bed and have to cancel plans, we lose friends because they can't handle dealing with the disease.
DTP does not discriminate it can attack anyone no matter how young or old they are, what they look like (people expect us all to look emaciated because we can't eat, but there are quite a few people with DTP that are very ill at normal wt if not overweight), and it can be fatal. We lose people everyday to these diseases and still we go unnoticed. We deal with ignorant ER docs and even hospitalists who refuse to accept something they can't see on paper. We live in fear that our hearts will give out from malnutrition, that the next line infection will be the one we can't fight off, or we go in for another surgery and don't wake up. We have families, we have kids of our own. It is a very scary existence to live, constantly living in the unknown.
The reason I'm posting about this is because the only way to spread awareness is to talk about it, scream it from the mountain tops, and not be afraid to share your own story and experiences. It can be a very isolating disease because most of our loved ones can't understand. When I first met Josh he thought with enough will power I could control it, i could take my three bites of solid food and when it tried to come back up I could just resist, what he didn't understand is that resisting it also meant massive amounts of pain. I fought so hard to try and do better for him that I ended up in the hospital obstructed. We need a cure, we need better treatment options, our last stitch hope at survival generally means a very dangerous five organ transplant that makes for a whole new mess of complications. I hear of friends dying from this everyday, babies are losing their mothers, husbands losings their wives and vice versa. DTP is not widely discussed like cancer or AIDS, it is an invisible illness that can kill very swiftly and because of how little knowledge is out there we are often sent to therapists and told it is in our head until something drastic happens.
It is easy to label us attention seekers or fakers because you don't understand...me and so many others are here to try to help you understand. When I was diagnosed I felt so alone, like no one could possibly understand what I was going through and I was lucky to find the G-PACT website which offers support and information for patients and families who are struggling with DTP. We have good days and bad days and that makes it harder for people to understand, one day I could be able to go for a short walk to the park with my walker and other days I lay curled up in a ball holding a bucket while Josh cleans up my puke or holds me when I'm dry heaving blood. I feel like for me this disease has taken my pride away, I've always wanted to be in control of my life and my body and now I have to depend on others, there are days that I can't walk to the bathroom without help. I am blessed to have a beautiful little boy and a great support system that makes sure no matter how sick I am he is always having fun, it is part of the reason we moved close to family.
I'm not expecting this one blog post to make a difference or help people completely understand, but I'm trying to open up a forum here. Ask me questions, I'm not ashamed of my disease or my past. The doctors and their statistics say I won't live to grow old so I'm going to scream out awareness as long as I have breath in me. I don't plan on being another statistic, I believe in miracles and I still hold faith that we will be heard and a cure will be found. Please keep an open mind and spread awareness because the next person this disease strikes could very well be you or someone you love.
I was diagnosed in 2008 via an endoscopy and gastric emptying study. I was constantly bloated and couldn't stop throwing up no matter what we tried. We found out the hard way that I was allergic to the medications generally used to help treat the disease and I just kept feeling worse and worse. In early 2009 I went in to see the surgeon to have a j tube put in (had one previously for other reasons) and he told me that he could fix me. He said they discovered that a sleeve or partial gastrectomy could make it to where I could eat again. He said the procedure was originally designed for weight loss and given that I was barely at a normal weight at that point I would have to have a j tube put in as well. He was a doctor and I trusted him...I was wrong. The surgery was the most painful experience I've ever gone through and left me unable to even sip water. He made the procedure irreversible so now I only have five percent of my stomach left.
Eventually, I started having trouble tolerating my tube feedings and having massive amounts of pain. They informed me that my intestines were now beginning to fail and I was suffering from malabsorpton which is not uncommon. I would be admitted to the hospital for them to manage my pain and then sent home for the cycle to start again. Finally, they pulled my tube and put in a central access and began IV nutrition. I had to have a fistula take down to get the stoma site to close. Besides a bout with bad sepsis the TPN did wonders for my energy until I miraculously got pregnant with Damien. At 11 wks along I had my third jejuneostomy. Feeds were still hellishly painful and I had to be on pain medication to keep them high enough for him to grow. by God's grace my son was born perfectly healthy leaving me with dangerously bad labs. Things seemed okay for awhile and then my stoma site started to pour bile, tube feed, or anything I managed to drink orally out filling up an ostomy bag up to three times a night. Eventually, it meant more surgery for another site to be placed which ended up with massive complications.
All in all I've had four jejuneostomies, six different port placements due to infections or malfunction, countless surgeries and painful procedures, many night spent sleeping in the ER, and long hospital admissions. I'm hydrated through the port in my chest and I will be seeing the surgeon on Tuesday to have another fistula take down and we are going to try a G tube rather than J this time since when dumping feeding directly into my intestine is causing rapid emptying with no absorption. There is talk that I will go on TPN for a week or two to get my strength back up and give me some gut rest before we start the new feeds. I am twenty seven years old and can't walk long distances without a walker. I've been told by the docs that if things don't get better or we find a different plan my body isn't going to last another five years. I'm still battling acute kidney failure which I'm hoping gets better before they change the word acute to chronic. Starting on Tuesday I will wear a heart monitor for thirty days to evaluate my rapid heart rates and palpitations. This is just my story, there are many more out there like it, many who are worse off than me.
When we are lucky enough to find a doctor that doesn't tell us it is in our heads there is still not much that can be done. they simply manage symptoms...hydrate us when we are dry, nourish us when we need it, manage pain, and nausea. Going out with friends becomes a huge deal, can we sit close enough to the bathroom just in case I need to run, is there anything I can tolerate on the menu, and the whole time you are sitting there wishing you could eat the food that everyone around you is. We carry backpacks with tube feed and TPN in them while trying to live as normal life as possible. There are days when we are too sick and weak to get out of bed and have to cancel plans, we lose friends because they can't handle dealing with the disease.
DTP does not discriminate it can attack anyone no matter how young or old they are, what they look like (people expect us all to look emaciated because we can't eat, but there are quite a few people with DTP that are very ill at normal wt if not overweight), and it can be fatal. We lose people everyday to these diseases and still we go unnoticed. We deal with ignorant ER docs and even hospitalists who refuse to accept something they can't see on paper. We live in fear that our hearts will give out from malnutrition, that the next line infection will be the one we can't fight off, or we go in for another surgery and don't wake up. We have families, we have kids of our own. It is a very scary existence to live, constantly living in the unknown.
The reason I'm posting about this is because the only way to spread awareness is to talk about it, scream it from the mountain tops, and not be afraid to share your own story and experiences. It can be a very isolating disease because most of our loved ones can't understand. When I first met Josh he thought with enough will power I could control it, i could take my three bites of solid food and when it tried to come back up I could just resist, what he didn't understand is that resisting it also meant massive amounts of pain. I fought so hard to try and do better for him that I ended up in the hospital obstructed. We need a cure, we need better treatment options, our last stitch hope at survival generally means a very dangerous five organ transplant that makes for a whole new mess of complications. I hear of friends dying from this everyday, babies are losing their mothers, husbands losings their wives and vice versa. DTP is not widely discussed like cancer or AIDS, it is an invisible illness that can kill very swiftly and because of how little knowledge is out there we are often sent to therapists and told it is in our head until something drastic happens.
It is easy to label us attention seekers or fakers because you don't understand...me and so many others are here to try to help you understand. When I was diagnosed I felt so alone, like no one could possibly understand what I was going through and I was lucky to find the G-PACT website which offers support and information for patients and families who are struggling with DTP. We have good days and bad days and that makes it harder for people to understand, one day I could be able to go for a short walk to the park with my walker and other days I lay curled up in a ball holding a bucket while Josh cleans up my puke or holds me when I'm dry heaving blood. I feel like for me this disease has taken my pride away, I've always wanted to be in control of my life and my body and now I have to depend on others, there are days that I can't walk to the bathroom without help. I am blessed to have a beautiful little boy and a great support system that makes sure no matter how sick I am he is always having fun, it is part of the reason we moved close to family.
I'm not expecting this one blog post to make a difference or help people completely understand, but I'm trying to open up a forum here. Ask me questions, I'm not ashamed of my disease or my past. The doctors and their statistics say I won't live to grow old so I'm going to scream out awareness as long as I have breath in me. I don't plan on being another statistic, I believe in miracles and I still hold faith that we will be heard and a cure will be found. Please keep an open mind and spread awareness because the next person this disease strikes could very well be you or someone you love.
Saturday, March 9, 2013
the girl
It has been four years, the girl is suppose to be fine, she is suppose to have it all together, suppose to be that shining example to those around her, but what if it is all just a game of smiles with the darkness still inside. She is grateful for what she has, how far she has come, but she knows it still lives inside her waiting for a weak moment to get out. Those old demons' whispers have managed to get louder and she pushes with all her might to put them back where they belong. It is a life she can't go back to and yet part of her wants it for some reason. She wants the routine, the focus on everything but real feelings, and being back in control or at least having that old illusion of control she had over her body, her pain.
The girl feels trapped in this body that has rebelled against her, the doctors don't understand, everyday is more pain and more unknowns. Most days she opens her eyes and has to force herself out of bed because it is just more of the same thing. She plasters on a smile and a positive attitude hoping maybe she can fake it enough to eventually make it, but behind the smiles there is the uncertainty, the glass is cracking, and the fight is getting harder and harder. Why keep fighting a losing battle, why not give the docs what they want?
The girl lives with her secrets, her shame, her failures, and smiles the rest of the time pretending she has it all together. They all think the demons just go away, but they don't. She hears them all the time...the nightmares are back. Four years and a paradigm shift she is suppose to have it all under control, she is suppose to be the one setting an example not asking for support. Some days she wonders if it will be like it was with her mom and if it is the case would it not be better for her to disappear before she has a chance to ruin the few people who love her and look up to her?
She is still on that road that she thought she left behind years ago, and is beginning to believe that you never truly leave that road behind. It is a matter of choice, she can go left or right, God isn't going to make the choice for her, He has given her free will for a reason. Just like the girl everyone has a choice and I believe in God and miracles, but I also believe the only person that is going to help you is you. For today the girl is still fighting, she is stumbling, battered and bruised but she is still fighting. She continues to hide behind the smiles and the fight to protect everyone around her, that is all she has ever wanted was to make everyone happy. The professionals doubt her, the talk about the number on the scale, and they don't understand that the more they talk the more power they give the whisper and the louder it gets and once the screaming starts the girl can't be sure she won't lose the battle.
The girl feels trapped in this body that has rebelled against her, the doctors don't understand, everyday is more pain and more unknowns. Most days she opens her eyes and has to force herself out of bed because it is just more of the same thing. She plasters on a smile and a positive attitude hoping maybe she can fake it enough to eventually make it, but behind the smiles there is the uncertainty, the glass is cracking, and the fight is getting harder and harder. Why keep fighting a losing battle, why not give the docs what they want?
The girl lives with her secrets, her shame, her failures, and smiles the rest of the time pretending she has it all together. They all think the demons just go away, but they don't. She hears them all the time...the nightmares are back. Four years and a paradigm shift she is suppose to have it all under control, she is suppose to be the one setting an example not asking for support. Some days she wonders if it will be like it was with her mom and if it is the case would it not be better for her to disappear before she has a chance to ruin the few people who love her and look up to her?
She is still on that road that she thought she left behind years ago, and is beginning to believe that you never truly leave that road behind. It is a matter of choice, she can go left or right, God isn't going to make the choice for her, He has given her free will for a reason. Just like the girl everyone has a choice and I believe in God and miracles, but I also believe the only person that is going to help you is you. For today the girl is still fighting, she is stumbling, battered and bruised but she is still fighting. She continues to hide behind the smiles and the fight to protect everyone around her, that is all she has ever wanted was to make everyone happy. The professionals doubt her, the talk about the number on the scale, and they don't understand that the more they talk the more power they give the whisper and the louder it gets and once the screaming starts the girl can't be sure she won't lose the battle.
people can change
My mom spent years drilling into my head that people can't change, she would say they would lie to get what they want, but at the end of the day people don't change. For years I believed that, I believed that she couldn't quit drinking because it was part of her and like she always reminded me "people don't change". She didn't change no matter how many bruises she left, the venom she spewed from her mouth, or that fact that she had two daughter she was leading. Her belief that she couldn't change is the reason that I had to hold my five year old sister as we watched them put our mother in the ground. She has missed so many things, she never saw Kelly graduate kindergarten, she never saw me recover, and she never got to hold her grandson. She left us without a mom to turn to all because people don't change.
I spent years believing that fact, I kept cutting, restricting, and purging because it was who I was and people don't change. I couldn't hold a normal friendship, in fact I only have a handful of friends left from years ago. Selfishly I kept a tight hold on my addictions, ignoring the hurt that I was causing everyone around me, ignoring the fact that my five year old sister needed me now more than ever since we lost our mother. Nothing seemed to matter though, I was a host to a parasite. Sure I walked, talked, and even laughed sometimes, but it wasn't real because the only thing I ever truly thought about was my calorie count, how many mls of water I had taken in, or how I had to find a way to cut to stop all of these overwhelming feelings. So many people tried to help me, the threw everything they could into to me until they had nothing left to give and had to step away and I can't blame them for that in the slightest. My brain was full of lies that I couldn't see past.
I can't say exactly when things started to change, I met the man who will be my husband and no matter how hard I pushed he didn't run the other way. The thing is though, no one can make you change it comes from within, it comes from you realizing you are more than some disease or addiction. I had to come to terms with a lot of things and there are still boxes left unopened on my shelf. I'm angry that my mom couldn't see past the lie and realize that change was possible, I can forgive her for the bruises, the hateful words all caused by a bottle, but forgiving her for leaving me and Kelly behind is taking more time than I thought possible.
It is no secret that I lost it when my mom died, I fell into my eating disorder, was constantly needing to be stitched up for cuts, on so many meds there are periods of time I no longer remember, and being involved with a loser who spent all of my money on drugs. I gave up on life, I couldn't keep up with it anymore, the pain was so great I just wanted out so I pushed bottles of pills down my j tube, I was lucky a friend found me when I wouldn't pick up the phone. You would have thought that would have been rock bottom, no so much. I walked into the psych emergency room and told them I was going to kill myself and they sent me home because I wasn't medically stable enough to be there. The next morning I woke up in the intensive care unit...still not rock bottom. People don't change so I just kept refusing to run tube feeds and slicing the crap out of myself everyday. I was gone, I wasn't Andrea, she was no where to be found.
It wasn't long after all of that I met Josh, we were just friends immediately. there was some kind of spark between us. If I believed in love at first sight I would say that is what we had. It is a running joke that we are modern day Johnny and June because no matter what get thrown at us we see each other through it. We walk the line together and when one falls we pull them back. It was July fourth 2009 when he kicked in the door to find me staring off into space with a gash in my arm that took six stitches to close. That was the last time a razor has touched my flesh for the purpose of harm. It has been hell and some days my skin tingles begging for me to just give in, whispering it is my nature. The same with my eating disorder, I've heard her whispers lately telling me that I can be in control again, I can feel better the pain, the stress of being sick all of it could just disappear if I just let her back in. It would be easy to give in, I've got a cop out...If the docs are right I'm not going to live another five years, why not go down as the real me? Anyone notice the lie there...that wasn't the real me anymore than that woman with the bottle was my real mom.
Change is very possible and it is sad that my mom couldn't see that truth because she might still be here now, how i wish she was here now. People overcome addictions everyday, it isn't easy and there are never guarantees you won't have to pick up your armor and battle again, but you can win and you can survive. I no longer have the time I thought I would always have. We all think that, we all think we have time....tomorrow we will change, we will do better, be a better father, mother, son, daughter, friend whatever, but sometimes tomorrow isn't going to be there. I lost ten years of my life to my eating disorder and depression...TEN YEARS! I have no college degree, I gave up a career in music, and I've lost a lot of people who really did mean a lot to me. I spend most of my time in hospital beds or doctor's appointments while they come up with more painful tests and procedures to extend things. My kidney numbers are still in renal failure, my heart is not holding up like it use to, and through all of this I'm still grateful. I am blessed to have what I have. I wake up every morning to the most beautiful blue eyed miracle anyone could ever ask for and I praise God for everyday he gives me with him. I might have this body that is fragile and has already been stamped with an end date, but you know what I'm Andrea again, I am no longer a host to some parasite. Sometimes I think this is the first time in my twenty seven years that I have truly been me. My demons will always haunt me, but I've hit that bottom hard and I know what it takes to climb back out and the consequences that come with it.
To those of you still trapped deep inside your addictions, your darkness...you are not alone and you can break free. Change is possible despite what anyone has every told you, it just take work and it will be the hardest work you've ever had to do. You take it one day at a time and if that is too much one hour, one minute, or even one second. You will fall, but that doesn't mean you stay down. You can be a victim or a survivor and a survivor begins the climb back up after they have fallen while a victim sits there and waits for someone to come and rescue them. I promise you...all those people who are trying to help you will eventually reach their limits because we all have them. You have to be the change you want to be, trust me I am well aware of how cliche that is. I pray and even yell at God some days, I ask why He kept me alive only to get better and be told my weakened body won't grow old. My faith comforts me, for some that isn't the case (by the way God isn't going to fix you, He gave you free will to fix yourself or not). Unfortunately, no one can fight these battles for you whatever they maybe. We all have our own tragedies, our own cross to bear. People can change, they just have to want it, they have to be willing to claw their way out of the pit and be prepared to fall back down in the mud and start all over. Having a support group is awesome, but don't expect them to fix your problems for you because at the end of the day you can be a survivor or a victim...be a survivor.
I spent years believing that fact, I kept cutting, restricting, and purging because it was who I was and people don't change. I couldn't hold a normal friendship, in fact I only have a handful of friends left from years ago. Selfishly I kept a tight hold on my addictions, ignoring the hurt that I was causing everyone around me, ignoring the fact that my five year old sister needed me now more than ever since we lost our mother. Nothing seemed to matter though, I was a host to a parasite. Sure I walked, talked, and even laughed sometimes, but it wasn't real because the only thing I ever truly thought about was my calorie count, how many mls of water I had taken in, or how I had to find a way to cut to stop all of these overwhelming feelings. So many people tried to help me, the threw everything they could into to me until they had nothing left to give and had to step away and I can't blame them for that in the slightest. My brain was full of lies that I couldn't see past.
I can't say exactly when things started to change, I met the man who will be my husband and no matter how hard I pushed he didn't run the other way. The thing is though, no one can make you change it comes from within, it comes from you realizing you are more than some disease or addiction. I had to come to terms with a lot of things and there are still boxes left unopened on my shelf. I'm angry that my mom couldn't see past the lie and realize that change was possible, I can forgive her for the bruises, the hateful words all caused by a bottle, but forgiving her for leaving me and Kelly behind is taking more time than I thought possible.
It is no secret that I lost it when my mom died, I fell into my eating disorder, was constantly needing to be stitched up for cuts, on so many meds there are periods of time I no longer remember, and being involved with a loser who spent all of my money on drugs. I gave up on life, I couldn't keep up with it anymore, the pain was so great I just wanted out so I pushed bottles of pills down my j tube, I was lucky a friend found me when I wouldn't pick up the phone. You would have thought that would have been rock bottom, no so much. I walked into the psych emergency room and told them I was going to kill myself and they sent me home because I wasn't medically stable enough to be there. The next morning I woke up in the intensive care unit...still not rock bottom. People don't change so I just kept refusing to run tube feeds and slicing the crap out of myself everyday. I was gone, I wasn't Andrea, she was no where to be found.
It wasn't long after all of that I met Josh, we were just friends immediately. there was some kind of spark between us. If I believed in love at first sight I would say that is what we had. It is a running joke that we are modern day Johnny and June because no matter what get thrown at us we see each other through it. We walk the line together and when one falls we pull them back. It was July fourth 2009 when he kicked in the door to find me staring off into space with a gash in my arm that took six stitches to close. That was the last time a razor has touched my flesh for the purpose of harm. It has been hell and some days my skin tingles begging for me to just give in, whispering it is my nature. The same with my eating disorder, I've heard her whispers lately telling me that I can be in control again, I can feel better the pain, the stress of being sick all of it could just disappear if I just let her back in. It would be easy to give in, I've got a cop out...If the docs are right I'm not going to live another five years, why not go down as the real me? Anyone notice the lie there...that wasn't the real me anymore than that woman with the bottle was my real mom.
Change is very possible and it is sad that my mom couldn't see that truth because she might still be here now, how i wish she was here now. People overcome addictions everyday, it isn't easy and there are never guarantees you won't have to pick up your armor and battle again, but you can win and you can survive. I no longer have the time I thought I would always have. We all think that, we all think we have time....tomorrow we will change, we will do better, be a better father, mother, son, daughter, friend whatever, but sometimes tomorrow isn't going to be there. I lost ten years of my life to my eating disorder and depression...TEN YEARS! I have no college degree, I gave up a career in music, and I've lost a lot of people who really did mean a lot to me. I spend most of my time in hospital beds or doctor's appointments while they come up with more painful tests and procedures to extend things. My kidney numbers are still in renal failure, my heart is not holding up like it use to, and through all of this I'm still grateful. I am blessed to have what I have. I wake up every morning to the most beautiful blue eyed miracle anyone could ever ask for and I praise God for everyday he gives me with him. I might have this body that is fragile and has already been stamped with an end date, but you know what I'm Andrea again, I am no longer a host to some parasite. Sometimes I think this is the first time in my twenty seven years that I have truly been me. My demons will always haunt me, but I've hit that bottom hard and I know what it takes to climb back out and the consequences that come with it.
To those of you still trapped deep inside your addictions, your darkness...you are not alone and you can break free. Change is possible despite what anyone has every told you, it just take work and it will be the hardest work you've ever had to do. You take it one day at a time and if that is too much one hour, one minute, or even one second. You will fall, but that doesn't mean you stay down. You can be a victim or a survivor and a survivor begins the climb back up after they have fallen while a victim sits there and waits for someone to come and rescue them. I promise you...all those people who are trying to help you will eventually reach their limits because we all have them. You have to be the change you want to be, trust me I am well aware of how cliche that is. I pray and even yell at God some days, I ask why He kept me alive only to get better and be told my weakened body won't grow old. My faith comforts me, for some that isn't the case (by the way God isn't going to fix you, He gave you free will to fix yourself or not). Unfortunately, no one can fight these battles for you whatever they maybe. We all have our own tragedies, our own cross to bear. People can change, they just have to want it, they have to be willing to claw their way out of the pit and be prepared to fall back down in the mud and start all over. Having a support group is awesome, but don't expect them to fix your problems for you because at the end of the day you can be a survivor or a victim...be a survivor.
Thursday, March 7, 2013
Relapse?
Lately, that demon that I've kept so far in the back of my mind has managed to find her way to the front. I managed to get the team of doctors that base one's whole nutritional status on weight as oppose general overall physical symptoms and low labs along with ketones in urine which is my tell tale sign that I'm in serious trouble. I already barely get any nourishment in besides small amounts of GP friendly foods and it causes torturous pain at best, vomiting blood at its worse. Even though the muscle wasting is so obvious I use a walker to walk any kind of long distances, my kidneys and my heart at basically screaming they are in trouble they keep focusing on some number on a scale. It has been creeping into my mind that if that is what they want then maybe I should give them what they want. I know that is no my own thought, I know where it stems from, but I also know I have no one who can understand that. After four years of recovery why would I risk a relapse, but the answer is simple I am living a miserable life right now, the gastroparesis is taking everything from me. I am still a good mother, but not the mother I want to be. He is always fed, cleaned, played with, but I can't run around the park with him. I know he is just happy when we lay together and watch one of his movies or play with flash cards and color, but I owe him more. Everyone says I'm a great mom, but not good enough in my mind, I'm not a good enough anything it seems anymore.
When the doctor said they were going to do a G tube instead of a J the wrong thoughts came to mind. I remember back to that very first surgery appointment with peds surgery many years ago when Dr. Rahm was talking about putting in a J tube when he got a quick call from Rob. He came back in with a completely different plan, which included a J tube. They didn't trust me, and at that time they shouldn't have because I would have tube purged until I died. At that time in my life my target weight was as close to zero as possible without dying. I exercised like there was no tomorrow, ignored what few hunger pains I developed and then dealt with the hospitalizations. I had no life, I wasn't even me, I was her, that demon that spewed venom at anyone who dared questioned me about what I was doing. It was my life and I've always known I won't live long so why not go out on my own terms right?
Now, there is a two year old that looks at me like I'm the sun and the moon, who grabs his blankie and holds me as tight as he can afraid if he lets go I won't be able to be around the next day. But, these doctors are going to kill me if they keep waiting for a number on the scale to tell them something is wrong. The attending at the hospital told me I was going to die young. To be honest I've always known it I simply pray that I am here long enough to see my son grow enough to know his mommy and how much I loved him...maybe that is selfish because then he would have to feel pain and that is the last thing I want in this entire world. I just want to protect him and give him the mommy that he deserves.
I see the girl in the mirror, I am pale and the docs can't see because they have never known me well. Even when Josh screams at them and tells them that we are not lying that my wt always seems to stay stable when I'm malnourished. The docs throw science out there, but the problem is that not everyone is the same and every doctor I've ever had has told us that I am a freak of nature and they don't understand how someone who looks OK number wise can be in such a critical state. I've spent years enduring debilitating pain with this disease, being so weak, losing my own dignity having to have help to the bathroom or have josh clean up my vomit, and many other things. I've endured this uncontrollable pain when the person I was years ago would had already turned to razors and bleed the pain out until there was nothing left besides numbness and nothingness. I have not intentionally broken open my flesh in so many years and people think it goes away like I was some emo attention seeker cutter. I crave it like a heroin addict claims their next score. There are days that I can feel my skin crawl and I know the one thing that could make everything better is an option I gave up long ago. I vowed when my son was born that I would never shed my blood with him in the house, he would never, ever be exposed to that...if only that made it all go away.
My doc thinks seeing a counselor and talking about what it is like being sick with a chronic disease will help me cope better esp since I will probably die he figures I need someone to process that with. The only issue is I don't do therapy, I have tried really hard, but in all honest I don't trust them. The amount of people I trust can be counted on one hand and even they don't know some of the things buried deep within. I have no intention of pulling them off the shelves and bringing them back out, I have enough shit to deal with than any of that. I think counseling can do wonders for some people, but I just can't do it. I pour my heart and soul out into journals and blogs because it is all that helps these days and if you want to truly know me then I suggest you read those or even this. I am a very honest person, but I'm not me with anyone besides my son. Watch me interact with Damien and you will see who I am because Damien's mom is who I am, we shared a space for nine months, we cried together when the colic was hurting him so bad he just couldn't rest, and we laugh together. Being a mother is the only identity that really matters to me anymore and staying alive as long as possible seems to be very important to keep that identity.
I'm afraid of my old demons escaping because they want some magic number to understand this disease, it is ignorant. My doc says that idiopathic gastroparesis is one of the hardest to treat because there is no reason our bodies are rejecting food and they misunderstand that GP comes in all shapes and sizes. Awareness is so low that most of us are told it is in our head and then we die because of their ignorance. What happens if I relapse? I will lose all trust that I've worked so hard to gain. I just don't know how much longer I can keep this at bay...she wants out again, there are those whispers in my ear that I can show them the truth. Part of the reason my wt stays stable is because I have no strength to exercise anymore. It is obvious I am losing muscle mass, my teeth are rotting out of my head despite brushing, my hair falls out, my heart beats like it is going to stop at any moment, and they just keep focusing on the fucking number. I can't handle the number talk anymore...it has to stop or I'm going to end up letting her in. I think she is already trying...safe/unsafe is becoming part of my thought process again.
I just want my strength back again, I know I will be sick forever, the docs have all said that. They say I won't live long yet they offer bullshit treatment plans. I am not person that wants to live like this. I love to run and hike outside and I've done it before and will again with backpacks strapped to me with TPN or tube feed running. I'm not giving up, but I really need less judgement and mistrust and more understanding. Research GP...G-PACT has a website where you can learn all about it weight loss, weight gain and even like me, weight within a normal range is normal and does not dictate severity of disease. Just like they told me when I was leaving treatment early when my wt was still just in the normal range because I was purging so much, "normal weight people die of eating disorders too". I don't want sympathy, I simply don't want people to pretend they have walked my road or worn my bruises. We all have out own stories and I know there are people who have seen it worse than me, but this is my life and my story. If you don't like what I say or think then , by all means don't read about it, don't ask me questions because I have enough trouble dealing with the demons in me without others putting more fuel on the fire.
When the doctor said they were going to do a G tube instead of a J the wrong thoughts came to mind. I remember back to that very first surgery appointment with peds surgery many years ago when Dr. Rahm was talking about putting in a J tube when he got a quick call from Rob. He came back in with a completely different plan, which included a J tube. They didn't trust me, and at that time they shouldn't have because I would have tube purged until I died. At that time in my life my target weight was as close to zero as possible without dying. I exercised like there was no tomorrow, ignored what few hunger pains I developed and then dealt with the hospitalizations. I had no life, I wasn't even me, I was her, that demon that spewed venom at anyone who dared questioned me about what I was doing. It was my life and I've always known I won't live long so why not go out on my own terms right?
Now, there is a two year old that looks at me like I'm the sun and the moon, who grabs his blankie and holds me as tight as he can afraid if he lets go I won't be able to be around the next day. But, these doctors are going to kill me if they keep waiting for a number on the scale to tell them something is wrong. The attending at the hospital told me I was going to die young. To be honest I've always known it I simply pray that I am here long enough to see my son grow enough to know his mommy and how much I loved him...maybe that is selfish because then he would have to feel pain and that is the last thing I want in this entire world. I just want to protect him and give him the mommy that he deserves.
I see the girl in the mirror, I am pale and the docs can't see because they have never known me well. Even when Josh screams at them and tells them that we are not lying that my wt always seems to stay stable when I'm malnourished. The docs throw science out there, but the problem is that not everyone is the same and every doctor I've ever had has told us that I am a freak of nature and they don't understand how someone who looks OK number wise can be in such a critical state. I've spent years enduring debilitating pain with this disease, being so weak, losing my own dignity having to have help to the bathroom or have josh clean up my vomit, and many other things. I've endured this uncontrollable pain when the person I was years ago would had already turned to razors and bleed the pain out until there was nothing left besides numbness and nothingness. I have not intentionally broken open my flesh in so many years and people think it goes away like I was some emo attention seeker cutter. I crave it like a heroin addict claims their next score. There are days that I can feel my skin crawl and I know the one thing that could make everything better is an option I gave up long ago. I vowed when my son was born that I would never shed my blood with him in the house, he would never, ever be exposed to that...if only that made it all go away.
My doc thinks seeing a counselor and talking about what it is like being sick with a chronic disease will help me cope better esp since I will probably die he figures I need someone to process that with. The only issue is I don't do therapy, I have tried really hard, but in all honest I don't trust them. The amount of people I trust can be counted on one hand and even they don't know some of the things buried deep within. I have no intention of pulling them off the shelves and bringing them back out, I have enough shit to deal with than any of that. I think counseling can do wonders for some people, but I just can't do it. I pour my heart and soul out into journals and blogs because it is all that helps these days and if you want to truly know me then I suggest you read those or even this. I am a very honest person, but I'm not me with anyone besides my son. Watch me interact with Damien and you will see who I am because Damien's mom is who I am, we shared a space for nine months, we cried together when the colic was hurting him so bad he just couldn't rest, and we laugh together. Being a mother is the only identity that really matters to me anymore and staying alive as long as possible seems to be very important to keep that identity.
I'm afraid of my old demons escaping because they want some magic number to understand this disease, it is ignorant. My doc says that idiopathic gastroparesis is one of the hardest to treat because there is no reason our bodies are rejecting food and they misunderstand that GP comes in all shapes and sizes. Awareness is so low that most of us are told it is in our head and then we die because of their ignorance. What happens if I relapse? I will lose all trust that I've worked so hard to gain. I just don't know how much longer I can keep this at bay...she wants out again, there are those whispers in my ear that I can show them the truth. Part of the reason my wt stays stable is because I have no strength to exercise anymore. It is obvious I am losing muscle mass, my teeth are rotting out of my head despite brushing, my hair falls out, my heart beats like it is going to stop at any moment, and they just keep focusing on the fucking number. I can't handle the number talk anymore...it has to stop or I'm going to end up letting her in. I think she is already trying...safe/unsafe is becoming part of my thought process again.
I just want my strength back again, I know I will be sick forever, the docs have all said that. They say I won't live long yet they offer bullshit treatment plans. I am not person that wants to live like this. I love to run and hike outside and I've done it before and will again with backpacks strapped to me with TPN or tube feed running. I'm not giving up, but I really need less judgement and mistrust and more understanding. Research GP...G-PACT has a website where you can learn all about it weight loss, weight gain and even like me, weight within a normal range is normal and does not dictate severity of disease. Just like they told me when I was leaving treatment early when my wt was still just in the normal range because I was purging so much, "normal weight people die of eating disorders too". I don't want sympathy, I simply don't want people to pretend they have walked my road or worn my bruises. We all have out own stories and I know there are people who have seen it worse than me, but this is my life and my story. If you don't like what I say or think then , by all means don't read about it, don't ask me questions because I have enough trouble dealing with the demons in me without others putting more fuel on the fire.
Tuesday, March 5, 2013
Identity
Today my doctor had some pretty serious questions for me, at first I took offense to them thinking he was accusing me of holding onto my disease. I immediately locked up and wanted to run out of the room away from the confrontation because that is how I work, I don't like telling it like it is or telling people my true opinions on things, maybe that is why some of these docs are so quick to grab inaccurate opinions of me. I immediately put my head down, draw my knees to my chest, and cease standing up for myself. Of course they have developed their own opinions because I haven't put myself out there for them to know the real Andrea because I'm so scared of being unaccepted. My doc rolled his little chair in front of my wheelchair and asked flat out, "You have been really sick since you were a teenager, if we find a way to help you and make you feel better would you know how to act if you weren't sick"?
I sat bewildered for a moment, almost pissed off that he would even ask such a question. Then it hit me, I looked him in they eye and said that being sick is not my identity. If they told me they could fix it all tomorrow I would be there waiting because there were so many things I was suppose to do and suppose to be before I got sick. What is funny is he told me that was the right answer. Now that I've had a few hours to think on that, there is no right or wrong answer to that question. For years being sick was my identity, I couldn't imagine life without my eating disorder and self harm, couldn't imagine life without the chaos of emergency hospital admits, ignoring my youth, the friends I could have kept, the chances I had to do what I love (sing and play music), graduating college, all those things that you are suppose to enjoy in your early twenties I missed. I lied about why I couldn't go out because I had to go work out and slit my wrist open, I woke up in the ICU after trying to end my life, and I just couldn't see past any of it. No one understood, but I couldn't figure out who I was without my anorexia, I couldn't identify with anyone besides others who were just as lost as I was.
When I met Josh I was so lost I didn't even know whether I was coming or going, I had one goal and it was to get the hell out of this world. July 4, 2009 after nearly winning my fight with God and taking my own life Josh broke down a door to find me sitting there staring into nothingness bleeding, making no intent to stop it, I was no one worth saving, I had nothing to give, talents wasted, friends gone, failure at life. He picked me up off that bed and put me in a cab to the hospital, where six stitches later I was "fixed". I was far from fixed, the road would be long and hard and thing only person that could make it was me. I could have all the support in the world, but the only time you get better is if you fight it yourself because you are fighting something in your head. It wasn't easy, my disease fought me, knocked me on my ass every chance she got. Some days the screaming was unbearable and I wanted nothing more than to bleed her quiet or swallow enough pills to knock me out for a few days. One day at a time it became easier, my identity became less of me being sick and more of me having a life. Josh and I went everywhere together, and though the gastroparesis was already taking it's toll on me I still tried so hard to eat like a person...no more safe/unsafe foods, no food rituals, just eating very few bites of whatever I could keep down. I learned to enjoy the things I had deprived myself so long.
Things were changing, I was no longer Andrea the anorexic cutter, I was simply Andrea. My new friends didn't care that I had to use a feeding tube to help get my calories in because of the gastroparesis. I was able to walk everywhere, go play in the park, go swimming, I was able to have a life while dealing with my GP. It was short lived as we got news that my gastroparesis was getting worse, my intestines were not responding they way they were suppose to. Every two seconds we found ourselves back in the OR fixings ulcers and bleeds, yet even through all of this I knew it was better than who I was before. I was involved in the lives of three great little kids who loved me and I loved them. I was determined to stay away from the hospital even when I should have been there. Eventually, the surgeon pulled my tube and began TPN even then I refused to slow down because I would never allow myself to be defined by an illness again. Backpack and all I would run around at the park and everything no caring about anything but enjoying life, a life with a purpose.
When we found out that Damien was growing inside me the docs told me he would kill me, they told me so many horror stories that no mother should have to hear, but I knew it in my heart and soul that we would make it, no matter how sick I got he would be OK. We made it, my labs barely enough to keep me walking, but when they pulled that baby out in the OR and I heard him cry nothing mattered anymore, my identity changed, my purpose in life changed...I was a mommy and I would fight tooth and nail to see that little boy grow up just like I fought to keep him healthy while we shared a body. They told me the pregnancy seriously weakened me, the disease advanced, the pain would worsen, and many more things. None of that mattered anymore, I was holding my reason for life. I know who I am and it has nothing to do with being sick...I am simply Damien's mom. Sick or not I hold him when he cries, I sing to him, I dance with him, we read, I tickle him to hear those beautiful giggles, and the pain and the gastroparesis and intestinal failure just doesn't matter to me.
Being sick is a part of my life, but no more than doing the dishes or making dinner for my family. I don't identify with it, I go to the doctor and I fight through the pain and I fight for my body to heal so I am here to raise my son. If I woke up tomorrow well, it would be the brightest day of my life, I would run my little boy to the park and play until he wanted to go home, he would take a nap while I scrapbooked and cleaned our house up, and I would relish in the fact there was no pain and so much energy. I would do the things I love again. Most people know I'm sick, but how many know my musical abilities, do you know I lost a scholarship for music because of being sick years ago? Do you know I play four mallet marimba, piano, or sing? I am much more than a diagnosis. I am sick, but I get up everyday even when I have to carry a bucket around with me because I'm a mom above and beyond anything. Some say I risk my life by not going to the hospital when I should, but I would rather be here with my son and my fiance. I am more than this. Trust me, I know that some of my posts and FB status seem to dwell on it and that is simply out of frustration because I want relief, I want those beginning years back where I was sick, but I could still just strap my backpack on and go wherever I wanted and do whatever I wanted. I am ashamed of needing a wheelchair, a walker, needing Josh to help me down the stairs some days. I am a stronger person than that...I do no accept weakness very well at all.
I've seen many tragedies in my twenty seven years, things I wouldn't wish on my worse enemy, things I've overcome and had to forgive. A boy took a piece of me away, left me living in a women's shelter for months forcing me to share details with police officers that would just assume have left tucked inside of me. I had very few friends who could understand and my mom would try when she was sober. A few months later I lost my granddad who meant the world to me and then my mom followed. I never thought I could miss her so much, after the years of drinking, bruises, and worse the words that will never leave my soul, but five years later and I weep for her. I spent so many years lying and smiling pretending that everything was okay when it wasn't and everyone knew it wasn't. I made stupid mistakes, I lost people that I wish I still had in my life. I've done a lot of things I regret and I spent years lying and trying to hide who I truly was. I was everything that everyone else wanted and I hated me. I identified with my illness and I can admit that as truth. But, I can tell you this fucking gastroparesis/intestine shit is not my identity. I believe it is my cross to bear, I do not believe it is punishment rather consequence for years that I allowed another illness to tear me apart. I am not a number or statistic and a piece of paper isn't going to tell you how much I hurt or how bad my body is doing. I've lived my life letting everyone else tell me how I'm suppose to feel or what I am suppose to do. Here's the deal...this is my head and I can promise for the first time in a long time this brain is all Andrea. I will go through with the surgeries and do whatever it takes to be the mom I know I can be for Damien. I will sing again, I will play music again, and I will teach my son how to do it also.
I've accepted that I have nothing to prove to anyone...I know the truth and that is all that really matters. People are going to think what they want, they are going to gossip and make judgments based on whatever and I can't do a damn thing about it, but I can keep going. I lived nightmares before, I've seen the boogeyman, and you can either let it run you or tell it to take a flying leap. I am not a size nothing anymore, I suffer from gastroparesis/intestinal failure, I need a tube to get proper nourishment to my organs maybe from the years neglect maybe it all started with that first ulcer at eight, I have my secrets that I will never tell anyone (some things are best left on the shelf in our brains), I am weak, but I am not useless, I do not like to be fawned upon for being sick, I am scared of death and yet prepared, I am in recover from a disease that was going to take my life, I no longer bleed at the end of the day, and above all, I am the mother of a beautiful two year old boy...that is my identity and has been since February 17, 2011. I am not a liar, I will not lie. I suffer from a horrible GI disease, but I am not that disease. I promised my son that I would fight and the only way Jesus is getting mommy off this planet is with me kicking and punching the whole time. I don't feel sorry for myself, I get down and frustrated at times, but sorry...no...despite the debilitating pain and other unpleasant side effects it just doesn't matter because I'm a mom and I will continue to "mommy up" no matter how sick I am.
If you want to know who I am it is simple...I am Andrea Michelle Schneider, I lost my mother to her illness because she couldn't see herself as anything else besides an alcoholic, I am soon to be a wife, and I am a devoted mother to my two year old, and I am far from perfect and for the first time in my life I think that is OK. I accept being sick, but it won't ruin however long I have on this planet with my son because I am so much more that that.
I sat bewildered for a moment, almost pissed off that he would even ask such a question. Then it hit me, I looked him in they eye and said that being sick is not my identity. If they told me they could fix it all tomorrow I would be there waiting because there were so many things I was suppose to do and suppose to be before I got sick. What is funny is he told me that was the right answer. Now that I've had a few hours to think on that, there is no right or wrong answer to that question. For years being sick was my identity, I couldn't imagine life without my eating disorder and self harm, couldn't imagine life without the chaos of emergency hospital admits, ignoring my youth, the friends I could have kept, the chances I had to do what I love (sing and play music), graduating college, all those things that you are suppose to enjoy in your early twenties I missed. I lied about why I couldn't go out because I had to go work out and slit my wrist open, I woke up in the ICU after trying to end my life, and I just couldn't see past any of it. No one understood, but I couldn't figure out who I was without my anorexia, I couldn't identify with anyone besides others who were just as lost as I was.
When I met Josh I was so lost I didn't even know whether I was coming or going, I had one goal and it was to get the hell out of this world. July 4, 2009 after nearly winning my fight with God and taking my own life Josh broke down a door to find me sitting there staring into nothingness bleeding, making no intent to stop it, I was no one worth saving, I had nothing to give, talents wasted, friends gone, failure at life. He picked me up off that bed and put me in a cab to the hospital, where six stitches later I was "fixed". I was far from fixed, the road would be long and hard and thing only person that could make it was me. I could have all the support in the world, but the only time you get better is if you fight it yourself because you are fighting something in your head. It wasn't easy, my disease fought me, knocked me on my ass every chance she got. Some days the screaming was unbearable and I wanted nothing more than to bleed her quiet or swallow enough pills to knock me out for a few days. One day at a time it became easier, my identity became less of me being sick and more of me having a life. Josh and I went everywhere together, and though the gastroparesis was already taking it's toll on me I still tried so hard to eat like a person...no more safe/unsafe foods, no food rituals, just eating very few bites of whatever I could keep down. I learned to enjoy the things I had deprived myself so long.
Things were changing, I was no longer Andrea the anorexic cutter, I was simply Andrea. My new friends didn't care that I had to use a feeding tube to help get my calories in because of the gastroparesis. I was able to walk everywhere, go play in the park, go swimming, I was able to have a life while dealing with my GP. It was short lived as we got news that my gastroparesis was getting worse, my intestines were not responding they way they were suppose to. Every two seconds we found ourselves back in the OR fixings ulcers and bleeds, yet even through all of this I knew it was better than who I was before. I was involved in the lives of three great little kids who loved me and I loved them. I was determined to stay away from the hospital even when I should have been there. Eventually, the surgeon pulled my tube and began TPN even then I refused to slow down because I would never allow myself to be defined by an illness again. Backpack and all I would run around at the park and everything no caring about anything but enjoying life, a life with a purpose.
When we found out that Damien was growing inside me the docs told me he would kill me, they told me so many horror stories that no mother should have to hear, but I knew it in my heart and soul that we would make it, no matter how sick I got he would be OK. We made it, my labs barely enough to keep me walking, but when they pulled that baby out in the OR and I heard him cry nothing mattered anymore, my identity changed, my purpose in life changed...I was a mommy and I would fight tooth and nail to see that little boy grow up just like I fought to keep him healthy while we shared a body. They told me the pregnancy seriously weakened me, the disease advanced, the pain would worsen, and many more things. None of that mattered anymore, I was holding my reason for life. I know who I am and it has nothing to do with being sick...I am simply Damien's mom. Sick or not I hold him when he cries, I sing to him, I dance with him, we read, I tickle him to hear those beautiful giggles, and the pain and the gastroparesis and intestinal failure just doesn't matter to me.
Being sick is a part of my life, but no more than doing the dishes or making dinner for my family. I don't identify with it, I go to the doctor and I fight through the pain and I fight for my body to heal so I am here to raise my son. If I woke up tomorrow well, it would be the brightest day of my life, I would run my little boy to the park and play until he wanted to go home, he would take a nap while I scrapbooked and cleaned our house up, and I would relish in the fact there was no pain and so much energy. I would do the things I love again. Most people know I'm sick, but how many know my musical abilities, do you know I lost a scholarship for music because of being sick years ago? Do you know I play four mallet marimba, piano, or sing? I am much more than a diagnosis. I am sick, but I get up everyday even when I have to carry a bucket around with me because I'm a mom above and beyond anything. Some say I risk my life by not going to the hospital when I should, but I would rather be here with my son and my fiance. I am more than this. Trust me, I know that some of my posts and FB status seem to dwell on it and that is simply out of frustration because I want relief, I want those beginning years back where I was sick, but I could still just strap my backpack on and go wherever I wanted and do whatever I wanted. I am ashamed of needing a wheelchair, a walker, needing Josh to help me down the stairs some days. I am a stronger person than that...I do no accept weakness very well at all.
I've seen many tragedies in my twenty seven years, things I wouldn't wish on my worse enemy, things I've overcome and had to forgive. A boy took a piece of me away, left me living in a women's shelter for months forcing me to share details with police officers that would just assume have left tucked inside of me. I had very few friends who could understand and my mom would try when she was sober. A few months later I lost my granddad who meant the world to me and then my mom followed. I never thought I could miss her so much, after the years of drinking, bruises, and worse the words that will never leave my soul, but five years later and I weep for her. I spent so many years lying and smiling pretending that everything was okay when it wasn't and everyone knew it wasn't. I made stupid mistakes, I lost people that I wish I still had in my life. I've done a lot of things I regret and I spent years lying and trying to hide who I truly was. I was everything that everyone else wanted and I hated me. I identified with my illness and I can admit that as truth. But, I can tell you this fucking gastroparesis/intestine shit is not my identity. I believe it is my cross to bear, I do not believe it is punishment rather consequence for years that I allowed another illness to tear me apart. I am not a number or statistic and a piece of paper isn't going to tell you how much I hurt or how bad my body is doing. I've lived my life letting everyone else tell me how I'm suppose to feel or what I am suppose to do. Here's the deal...this is my head and I can promise for the first time in a long time this brain is all Andrea. I will go through with the surgeries and do whatever it takes to be the mom I know I can be for Damien. I will sing again, I will play music again, and I will teach my son how to do it also.
I've accepted that I have nothing to prove to anyone...I know the truth and that is all that really matters. People are going to think what they want, they are going to gossip and make judgments based on whatever and I can't do a damn thing about it, but I can keep going. I lived nightmares before, I've seen the boogeyman, and you can either let it run you or tell it to take a flying leap. I am not a size nothing anymore, I suffer from gastroparesis/intestinal failure, I need a tube to get proper nourishment to my organs maybe from the years neglect maybe it all started with that first ulcer at eight, I have my secrets that I will never tell anyone (some things are best left on the shelf in our brains), I am weak, but I am not useless, I do not like to be fawned upon for being sick, I am scared of death and yet prepared, I am in recover from a disease that was going to take my life, I no longer bleed at the end of the day, and above all, I am the mother of a beautiful two year old boy...that is my identity and has been since February 17, 2011. I am not a liar, I will not lie. I suffer from a horrible GI disease, but I am not that disease. I promised my son that I would fight and the only way Jesus is getting mommy off this planet is with me kicking and punching the whole time. I don't feel sorry for myself, I get down and frustrated at times, but sorry...no...despite the debilitating pain and other unpleasant side effects it just doesn't matter because I'm a mom and I will continue to "mommy up" no matter how sick I am.
If you want to know who I am it is simple...I am Andrea Michelle Schneider, I lost my mother to her illness because she couldn't see herself as anything else besides an alcoholic, I am soon to be a wife, and I am a devoted mother to my two year old, and I am far from perfect and for the first time in my life I think that is OK. I accept being sick, but it won't ruin however long I have on this planet with my son because I am so much more that that.
Sunday, March 3, 2013
overcoming past seems impossible
I've learned recently that overcoming your past is easier said than done. It will be four years of recovery for me on July fourth, from both my eating disorder and self harm. It has been a very long road with many setbacks and obstacles, but I've fought tooth and nail to stay on track. It has been super frustrating because the doctors are accusing me of relapsing because it is easy to accept than the fact they don't understand gastroparesis and my absorption problems. They are trying to force my body to do things it physically can't because they want proof that I haven't relapsed. Over the next couple weeks they want to see if it is true I can't sustain myself on oral intake. Josh and I are completely baffled because we have done everything they have asked of us, I went through that awful small bowel follow through crying my eyes out and it showed them that my intestines weren't absorbing anything. They claim they don't understand why one day my guts are rapidly emptying and at other times they simply stop. My regular doc claims to understand and says sometimes people's bodies reject food and with idiopathic gastroparesis it makes treating more difficult because there is no reason why the body should not tolerate food. The only problem is that my doc is still a resident and it is the attending who has never spoken to me that is trying to use my past against me.
I have been nothing but honest with all of my docs, with everyone for that matter. I'm not ashamed of my past, rather I'm proud of the fact I was able to beat a disease that claims lives everyday. I have no fear foods or rituals, in fact it makes me sad that I can't eat without horrible pain/vomiting. I'll admit that the person I was four years ago was manipulative and would do anything to protect my ED. It was like having a parasite take over and I was trapped, I could see what I was doing yet I couldn't stop myself. I couldn't risk having to feel or think about things other than food and numbers. Anyone who knew me then and knows me now can testify to the fact that I am a completely different person.
Maybe I've earned this, maybe it is my penance for those years of lying to everyone who cared about me. I am just terrified right now that something horrible is going to happen while I prove to these docs that I haven't relapsed. The doc at the hospital the other day even believed that I was capable of snowing Josh...ha! My heart and kidneys aren't tolerating malnutrition well, when I left the hospital I was still in renal failure, my creatinine had gotten better, but is still almost three times what it is suppose to be. The docs said it wasn't a promising sign that they were so sluggish to repair themselves. I find myself unable to sleep because I'm scared I won't wake up. Josh is a wreck worrying about me and I hate doing that to him. He lives with me and is watching the woman he loves fade away, I've heard him on the phone with my doc yelling and threatening lawsuits esp if I die and my son is left without a mom.
I really wish there was a way to make them see that I am not the girl they read about in my medical records and I haven't been her in a long time. I understand the skepticism to an extent, but they have tests proving my insides aren't functioning properly. Surgery has tried to step in and offer suggestions and they are always shot down. I just want to feel better, I can't for the life of me understand how I spent so many years constantly dehydrated and malnourished because it truly sucks. I want my strength back, I use to be able to hook up to my feeds and take Damien for walks and play at the park and now I am lucky if I can get to the park with the help of a walker and then I'm so tired I just get to sit there and watch josh and Damien play. I know the doctors are trying to do what is right, but they are clearly wrong. The house nursing manager talked to me the other day before I left the hospital and he said that after reviewing everything he disagreed with what the docs were doing and told me to file a complaint because even if we were trying to push for a strict PO diet you don't pull a tube and cold turkey it. It is comforting that I do have docs on my side and I think firing my GI doc is what set the medicine attending off. She wasn't doing anything besides telling me how crappy my situation is and that she felt sorry for me yet would squash anything that was offered for treatment by other doctors.
I guess you can never completely overcome your past esp when your past involved you starving yourself and purging and now having a disease that presents with symptoms of vomiting, unable to tolerate food, and dumping. that could easily translate into purging, restricting, and laxative abuse by someone with an eating disorder. It is just hard because after four years you expect a little bit of trust, but I guess I haven't earned it. I won't stop fighting though, I will jump through the hopes and pray I don't die doing it and eventually they will see. They tell me they don't doubt that I have gastroparesis or absorption problems, but maybe they've improved enough to try PO feeding plan. They spend a lot of time contradicting themselves, they tell me they understand how horrible it makes me feel to eat only to have it not really absorb and then follow up with but we'd really like you to try and we will replace the tube in two weeks. It is almost like none of them can agree so they just go back and forth not understanding the damage it is doing to me and my family. I'm really hoping they dig their heads out of their butts by Tuesday. I wish my doc was able to make decisions because he understands what the situation is and knows that I've been completely honest rather than some attending who won't even walk into the exam room.
I have been nothing but honest with all of my docs, with everyone for that matter. I'm not ashamed of my past, rather I'm proud of the fact I was able to beat a disease that claims lives everyday. I have no fear foods or rituals, in fact it makes me sad that I can't eat without horrible pain/vomiting. I'll admit that the person I was four years ago was manipulative and would do anything to protect my ED. It was like having a parasite take over and I was trapped, I could see what I was doing yet I couldn't stop myself. I couldn't risk having to feel or think about things other than food and numbers. Anyone who knew me then and knows me now can testify to the fact that I am a completely different person.
Maybe I've earned this, maybe it is my penance for those years of lying to everyone who cared about me. I am just terrified right now that something horrible is going to happen while I prove to these docs that I haven't relapsed. The doc at the hospital the other day even believed that I was capable of snowing Josh...ha! My heart and kidneys aren't tolerating malnutrition well, when I left the hospital I was still in renal failure, my creatinine had gotten better, but is still almost three times what it is suppose to be. The docs said it wasn't a promising sign that they were so sluggish to repair themselves. I find myself unable to sleep because I'm scared I won't wake up. Josh is a wreck worrying about me and I hate doing that to him. He lives with me and is watching the woman he loves fade away, I've heard him on the phone with my doc yelling and threatening lawsuits esp if I die and my son is left without a mom.
I really wish there was a way to make them see that I am not the girl they read about in my medical records and I haven't been her in a long time. I understand the skepticism to an extent, but they have tests proving my insides aren't functioning properly. Surgery has tried to step in and offer suggestions and they are always shot down. I just want to feel better, I can't for the life of me understand how I spent so many years constantly dehydrated and malnourished because it truly sucks. I want my strength back, I use to be able to hook up to my feeds and take Damien for walks and play at the park and now I am lucky if I can get to the park with the help of a walker and then I'm so tired I just get to sit there and watch josh and Damien play. I know the doctors are trying to do what is right, but they are clearly wrong. The house nursing manager talked to me the other day before I left the hospital and he said that after reviewing everything he disagreed with what the docs were doing and told me to file a complaint because even if we were trying to push for a strict PO diet you don't pull a tube and cold turkey it. It is comforting that I do have docs on my side and I think firing my GI doc is what set the medicine attending off. She wasn't doing anything besides telling me how crappy my situation is and that she felt sorry for me yet would squash anything that was offered for treatment by other doctors.
I guess you can never completely overcome your past esp when your past involved you starving yourself and purging and now having a disease that presents with symptoms of vomiting, unable to tolerate food, and dumping. that could easily translate into purging, restricting, and laxative abuse by someone with an eating disorder. It is just hard because after four years you expect a little bit of trust, but I guess I haven't earned it. I won't stop fighting though, I will jump through the hopes and pray I don't die doing it and eventually they will see. They tell me they don't doubt that I have gastroparesis or absorption problems, but maybe they've improved enough to try PO feeding plan. They spend a lot of time contradicting themselves, they tell me they understand how horrible it makes me feel to eat only to have it not really absorb and then follow up with but we'd really like you to try and we will replace the tube in two weeks. It is almost like none of them can agree so they just go back and forth not understanding the damage it is doing to me and my family. I'm really hoping they dig their heads out of their butts by Tuesday. I wish my doc was able to make decisions because he understands what the situation is and knows that I've been completely honest rather than some attending who won't even walk into the exam room.
Subscribe to:
Comments (Atom)