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.
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