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.