Emotion...the good, the bad, and the ugly

   I've found myself more and more emotional lately. I'm watching my son hit so many milestones and I think about how many more he will reach in his preecious life and wonder how many of them I won't be able to see. I've actually found myself missing my anorexia or at least that fog it put over my brain where all I could here was fat,fat,fat, failure,failure,failure, and food, food, food. Now, in recovery that fog has lifted and I can think clearly again and I can face the future with crystal clear reality. The gastroparesis has taken my twenty six year old body and aged it far beyond anything I could have expected. I'm not scared of the surgeries or battling the infections, I will find the strength for my son. I'm most scared of leaving my baby and him having to watch me in pain, covered with tubes hanging out to feed me. I saddens me that my 18month old isn't phased when I am hooked up to my IV fluids or when I carry around my backpack full of tube feed. He still smiles at me and yells for "momma" to come pick him up. He doesn't see me as sick yet he just knows I'm his mommy and I play with him and take care of him. I know someday he will catch onto the fact that I'm not like all the other moms out there. I won't always make it to every game or concert because sometimes I will be in the hospital or too sick to make it and it will break my heart when he tells me he understands because I never wanted him to have to understand this.
   I am angry, I've always had a hard time admitting that fact, always wussed out when it came to standing up for myself or what I believe in. Now I feel like screaming all my thoughts from mountain tops. I want to tell young girls to stop hating their body, I want to tell people that you can overcome an eating disorder and you deserve to live free from it, I won't tell you its easy,but the hard work you put into recovery is worth it. I want to scream at every ignorant doctor that has ever made a stupid comment about gastroparesis and I want to tell all of those sufferring how brave they are and that I understand the courage it takes to get up everyday and hook up to tube feeds or tpn to push through the pain of multiple surgeries and line infections. I'm yelling for the people who have lost their fights to eating disorders and to those who fought their gastroparesis so hard until their body couldn't handle anymore. We deserve a cure and its only going to happen if we keep yelling.
   Everyone use to walk all over me, I held everything in and punished myself for not living up to everyone else's expectations. I starved myself, purged and cut while I was alone so I could keep smiling for everyone else. It took me years of recovery and fighting a chronic illness that is slowly taking my physical abilities, I alread get fed throug a tube and hydrated through an IV to finally stop faking it. If I'm happy or feeling joyous I will tell you and smile if I am sad or angry I can talk about that too I don't need to cut it on my flesh or flush it down the toilet.
   God gave me this little miracle that I was never suppose to get and I've watched him grow over the last eightteen months and I love him so much...he makes me smile, he makes me cry, and my heart belongs to him. What hurts me the most is knowing that at any second, at this simple surgery on Friday God could decide my time is up and I will never see those beautiful blue eyes sparkling at me again or cuddle him on my shoulder. Can I tell you the truth I am angry with God, I still love the Lord but I spend every night pleading with him for another day. I'm selfish...I've had help beating anorexia,self harm and battling my disease but its not enough I want to stay here for my baby. I need him to know who I am before I die...I need him to know how much I loved him and that I would do it again. The docs told us carrying him could make me sicker and it did, he took every last reserve I had and I am so happy I was able to give it to him because he is beautiful and healthy.
   I guess the main idea of this post is emotion...the good, the bad, and the ugly. Its ok to feel, its ok to be you. I spent so many years being everyone but me and now at twenty six looking down a uncertain path I can allow myself to feel. I focus on being a mommy everyday, my baby sees me with central lines and feeding tubes but you know what he still smiles, he isn't scared of me because hospital bed or not I still get to be his mommy. Don't hide your feelings if you want to scream or vent I will listen because we all deserve to have our voices because you never know when it will be too late to use them.

Great topic from a wonderful friend

   I started noticing more problems with pain and nausea after the small amounts of food I allowed myself in 2008, I would get that bloated refeeding belly that I usually got after a long hospital stay except this time I wasn't refeeding but barely taking anything in. My doctor sent me in to have a gastric emptying study done, that is where you eat a small amount of scrambled eggs that have an isotope that shows up under flouroscopy. I sat there for hours waiting for the eggs to empty like they were suppose to and they never did. I was diagnosed with gastroparesis which literally means stomach paralysis. What little I was allowing myself to take in was just sitting and rotting in my stomach...I spent time either in lots of pain or vomitting uncontrollably. To help me get some nutrition in I was placed in the hospital and a feeding tube was put down my nose and into my small intestine to avoid vomitting.
   Now I would be lying to you if I said I wasn't still trapped in my anorexia. I obsessed about every drip of tube feed that made its way in. I knew logically how sick the gastroparesis was making me but my ED voice kept encouraging it, telling me this disease was a blessing now I didn't have to eat. I couldn't see how life threatening and debilitating the disease really was.
   After months of having the tube down my nose and throwing it up a few times I went into see the surgeon who was suppose to place a surgical feeding tube in my jejunum. This particular surgeon told me there was a procedure that could cure my gastroparesis, he would do a partial gastrectomy leaving me with ten percent of my stomach left and ideally it would allow food to empty faster. I reluctantly agreed and when I woke up from surgery I had most of my stomach gone, a drain, and a j tube to help me get my nutrition. The surgery was very painful and I had a number of complications including discovering my intestines were paralyzed partially and had serious malabsorption issues. Even through this torture I was still holding on to my ED, I didn't think I could cope with this disease, the pain, life in general if I didn't have my anorexia to focus on. I couldn't hold down anything and I was in bed crying in pain most of the time.
   It was around this time I was giving up, I was in the ICU for overdosing, I gave up on my tube feeds because they hurt so bad, and everytime I turned around I was in the hospital and headed to the OR. All I felt was pain and even the anorexia couldn't cover it up. It was about this time I met Josh and I was a total mess...I didn't want to be in pain anymore, I wanted to get better but I still had my ED voice telling me food was bad and scary. Josh stood by me and encouraged me to keep fighting, he held me through the pain when I tried to eat, sat with me in the bathroom sick as can be, and he never turned away even when the anorexic voice came out telling him I hated him and I wouldn't let him make me fat and he couldn't control me. Slowly but surely things started to change and let me tell you it was sometimes two steps forward and three steps back but we never gave up. I felt it wasn't just me and my eating disorder against everyone but it was me and josh against my ED.
   My biggest wake up call to recovery happened while I was in the hospital because my intestines were rejecting feeds and I was losing blood. They told me I would have to go on TPN and it was complicated to deal with at home. I had to have a central line to deliever the nutrition to my heart, there are many risks with TPN sepsis from line infections, liver damage and so on. Within a year I had been in the OR ten times and something had to change. I slowly learned to let go of my anorexia and begin fighting my gastroparesis. Focusing on numbers and spending every free second in the mirror judging myself just wasn't the way to survive and fight this disease.
   Don't get me wrong my ED still lives deep inside of me but I know how to fight her. I was even given the miracle of having a baby when it was never suppose to happen. I live everyday with tube feeds, central lines and pain medication to help with the excruciating pain in my intestines. In the end I had to decide what was important...I could have held on to the anorexia and the GP would have destroyed me that much faster or I could really work recovery and fight this disease to which there is no cure. I made the choice to fight. Somedays are really hard even three years later but I look at my son and Josh and its worth it. There are no promises but I trust in God and I won't give up. I get scared esp on really bad pain days I cry and hope I can make it through. The pain subsides and I get up to see a smiling baby. Being sick is tough but at least I'm not alone. During my eating disorder I was alone even when I was surrounded by people I was trapped in my own head. I made the decision three years ago to fight and not stand idly by and let it all overtake me.
   I am not ashamed of my past and I write this blog to help others through my experiences. I will answer questions honestly and not shy away from the tough stuff so feel free to send me suggestions for blogs or questions.

Recovery versus Recovered

   I know I am going to catch some hate for this post and that is ok because its my blog and my opinion. As someone who spent most of her teens and early twentys trapped in an eating disorder thinking there was no way out I can only tell you from my story. I spent years in hosptial beds and treatment centers being force fed through a tube in my nose, I couldn't see the dying young woman that everyone else could. I hit rock bottom, I tried to take my life which left me in the intensive care unit, I felt like I couldn't make that monster in my head shut up. All I could hear was how I wasn't good enough, thin enough, perfect enough, I was a failure. When I looked in the mirror I just couldn't see the sick person looking back at me.com I fought everyone trying to help and pushed everyone away.
   My recovery began slow, it wasn't some magnificent realization and I turned it all around in a day. It was a slow and rocky climb that often found me back two steps. I hated food, I was disgusted with every bite, every can of tube feed that went inside my j tube, but I learned very slowly to tolerate it. There were times my skin crawled while my brain told me I deserved punishment...I had to purge or cut and everyday I didn't I got a little stronger. I had to learn to trust people, Josh in my case, I trusted him not to put my scary foods infront of me, I trusted him to hold me when I wanted to escape my own skin, and his love helped me fight. He didn't fix me, but he stuck by me so I could work on myself which so many people hadn't been able to do. I understand why I lost so many friends, its frustrating and painful to watch people you care about in such pain and causing so much pain. I was not an easy person to be around in the depths of my anorexia...Andrea disappeared and was replaced with this disease, this desperate need to keep nutrition out of me, I needed to be empty, I needed the control, I couldn't feel all the pain that my anorexia and self harm was protecting me from.
   Its been three years since I've ventured down my road to recovery. I hear people say I'm recovered and to be honest I'm not and I believe I never will be. I believe I can stay in a lasting recovery but not recovered. The anorexia still lives deep inside of me and I can admit often makes its way to the surface, I know have the strength to push it back down. I will always battle my demons. I would be lying if I said I didn't thing about restricting or cutting because I do. I'm not ashamed of that at all because I don't give in. My eating disorder will always be apart of me and to be honest I'm okay with that because it has shown me I am so much stronger and can face more than I ever thought I could.
   I know some people believe that it is possible to be completely recovered and maybe for them its true but I don't want others to get discouraged if you still have to fight that ED voice back down from time to time. You should be proud everyday you stand up to it and eat something, anything. Trust me I started with safe foods before venturing out. It all takes time, I want so much more for others sufferring, I want to save you from destroying your body like me. I'm left with a stomach and intestines that don't work, we face surgeries all the time and eventually transplant. Through all this I don't feel sorry for me I simply want my story to help others even just one person.
   I don't believe I will ever be totally recovered, to be honest I find the word damning, setting me up to fail. I work my recovery every day...I make the decision everyday to hook up to my feeds and hydration. Complacency leaves room for relapse. I work my recovery daily...I would be a liar if I told you ED doesn't find a way to the forefront of my mind sometimes. Somedays my skin crawls for the relief it use to feel when I cut. I know some people believe that you can become completely recovered, no more obsessing about ED, no more thinking about the numbers or anything like that. I strongly disagree. The moment you stop focusing on your recovery you leave room for relapse. Anorexia hides in the depths of your brain and you can go for a long time and not think about it and then bam its at the forefront of your mind. I respect my recovery and I know how easy it would be to lose it. My recovery has been one of the hardest things I've done one step forward and two steps back.
   I encourage you to keep focusing on your recovery, don't convince yourself its gone because its a monster that creeps in before you know what is going on. I'm twenty six years old with a j tube in my intestine to be fed and a central line to keep me hydrated and even with all of this I sometimes look in the mirror and thos thoughts come back. I am able to push it back because I know the consequences...my son is my everything. Maybe its possible to be fully recovered but in my experience its not something I can accept. I focus on my recovery everyday. I've learned to feel pain without turning to restricting or cutting but I keep my guard up.
   I'm sorry if I've offended someone but its my opinion that recovery is a life long battle, you're not just all of a sudden fine, you forget about the behaviors that protected you for so long. Everyday I stop and think about how far I've come and know that I have so much farther to go. Please don't stop fighting...its a slow, uphill battle but you can win, you aren't alone. I will talk to anyone who needs support. I want so badly to help people through the recovery process and its a process, a process that takes time, in my opinion a lifetime. You learn something new all the time in recovery and its truly amazing what you can learn about life and yourself, you can learn to value you and now the numbers on a scale or what size clothes you wear. There will be tough days but you will learn your strength to get through them and its beautiful. Don't give up.

   I spent so many years trying to disappear into my eating disorder, I didn't care about the consequences or that it was killing me. I spent my nights slicing my arms open to try and release all the hurt inside and in the end I'm just left with scars. Now here I am at twenty six facing down my mortality. The docs can't do much else, they manage my pain and try to keep me going with IV hydration and tube feeds. They have said that by thirty what's left of my intestines will be shot and I have a heck of a time keeping my lines from getting infected. I never planned it this way, I planneed to get my degree, get married, and have babies. The Lord blessed me with a miracle child. They told me he would weaken me and he did, but seeing that beautiful boy was worth everything to me and I wouldn't change it for the world.
   So many years I spent I spent obsessing about numbers and perfection, a perfection I could never attain. I use to think if I could reach that perfect number then all the punishment would stop, but no matter how low the number got I couldn't stop the punishment.  It took so many years for me to find recovery and convince myself that I didn't have to punish myself anymore. Even now though I still find myself punishing myself. I don't starve, purge or cut but I know that my anorexia contributed to everything going on now.
   I have a beautiful baby boy and I spend so many nights trying to make deals with God just to give me more time to watch him grow. I want him to know his mommy, to remember how much I loved him. I know there is no promise of tomorrow but it breaks my heart to think of leaving my son.
   I read about girls trying to develope an eating disorder and it makes me sick. Its not a lifestyle it is hell and it takes everything away from you. You lose family and friends because when you are in your ED there is only room for the two of you. You aren't alive just simply existing. It gets its claws into you and you can't escape. Years of my life all I can remember is the numbers, hospitals, feeding tubes, IVs, and so much more. I wish I could save everyone before the diseases takes over and ruins your body and life.
   Everyday is uncertain for me, I kiss my son and watch him sleep wondering if I will see him walk into his first day of school or do so many other amazing things. Uncertainty is an awful feeling. Every trip to the OR I pray I will wake up to see my son again. Looking back I wish I could have accepted help before it got so far. I write all this personal stuff because I want to make a difference to maybe one person. I don't want more young people facing down death. Tell someone, anyone because no one deserves this type of punishment.

Scared

   I know it has been awhile since I've updated, been battling a blood infection and next Friday I will go to the OR for the fourth time. My doctor who has taken care of me for the last few years has decided since my surgeon is at a different hospital then I should see and internist at that hospital. We have called countless docs and none will take someone in my condition. I am kept alive through central lines and fluids with potassium and tube feed through my j tube. The only reason I have any quality of life is the pain medication that numbs the unbearable pain I feel everyday and now I have no doctor to write my orders for my food and fluid. I don't admit this too often but I'm scared, terrified would be the best word to describe this situation. Without my central line I can't stay hydrated and without my tube feed I can't stay nourished.
   I feel so scared and so alone, I have friends who understand but family takes everything so lightly because they can't understand, they don't feel this everyday. This disease causes so much pain somedays I feel like I can't breathe and through all of it I smile and be a mommy to my son and my biggest fear is he will never know how much I loved him, how I would have given anything to make him happy. I hate myself for falling into anorexia and bulimia for kicking this disease into overdrive. I put the people I care about through so much and I hate myself for it.  I feel like the doctor I trusted abandoned me and I'm like a leper to the rest of them because I can't be treated easily with cold medicine and a flu shot.
   I believe in God and I believe he puts us through things for a reason, but at the same time I'm angry because at this rate I won't see thirty, I won't see my miracle grow up and go to his first day of school. I have this body that is barely holding on but my spirit is fighting so hard. Its not fair to josh to have to spend his days off taking care of me and keeping me comfortable.
   I've notice those thought breaking their way to the forefront of my mind...I found those old anorexic thought trying to overcome me in my weakness, reminding me how much better it was when my life was revolving around calories and restricting, how I wouldn't have to think about all of this pain and fear anymore, and I listened for about three seconds before I put it out of my head. I have no room for anorexia in my life right now or cutting.  Back during my ED I didn't fear death, I almost embraced it because I had nothing to live for and now I have everything to live for and a body that is running out of fight. Somedays it hurts so bad to move let alone get my housework done, I play with my beautiful miracle baby and sometimes picking him up causes pain, pain that is worth it.
   I read on some boards how people, young girls are fighting for eating disorders and it makes me so sad. I don't know if its the media or what glamorizing this illness but its awful. They don't talk about your hair falling out, the hair that grows on your starving body, being force fed with a tube down their nose, or the fact that it could kill just months after your start. I lost college, great friends, and my health to years of my ED. Now here I am at 26 in a dying body so scared I can't even put it into words. I am a devoted Catholic and I pray to the Lord day and night, but I'm still so scared, scared of what's next and even more scared of leaving the one thing I've ever done right in this world. I've disappointed so many people and I know that but Damien is my miracle, he saved me, brought me back from my nothingness and now to think he will never know how much I loved him, remember all the things we did together. Being a mommy has been my purpose and I know God gave me that gift.
   I know this blog post isn't my usual, but I'm being completely raw here. I've never been goo about admitted my fears but I am terrified. If I can't find a doc willing to take on very sick patients I'm not going to make it and I want to be strong and unwaivering but ill admit it...I'm terrified.