When enough is not enough

Sometimes, enough is not enough or as good as a feast. Not in the figurative sense, but in the literal sense. Since October 23 I have lost 20% of my body weight due to a sudden onset package deal of gastrointestinal symptoms that include constant nausea, gagging and retching, inability to tolerate any texture in food, occasional vomiting (always when trying to eat a textured food), complete loss of appetite, and diarrhea. The symptoms began earlier in October, but my weight was not monitored until October 23. While I am now securely in the "normal" body weight BMI range, this is absolutely not how I wanted to lose weight. Not only has it been incredibly miserable (imagine having the worst stomach flu you can remember every day for over a month) but it is incredibly unsafe. I have developed factor deficiencies in my blood, which translate to mean a mild hemophilia, as a result of malnutrition as well as extreme muscle weakness, fatigue, and most recently labwork has shown some indications that my liver is unhappy with the process as well. I have been undergoing diagnostic tests at Georgetown University Hospital under the care of a GI doctor, but we have consistently found nothing to provide any clues. It is always a possibility that this is a gift from the dysautonomia that I have (a failure of my brain to regulate autonomic functions - all of the functions the brain does without you consciously telling it what to do like your blood pressure, heart rate, temperature, balance), the brain malfunction that keeps giving even when I ask it kindly to please stop or try to return a present. At this point, even though we hear hoof beats we are no longer looking for horses and are now looking for zebras (i.e. instead of looking for the usual explanations, we are now at the point of looking for the most unusual explanations). I never thought that I would be at the point where I am forcing myself to eat and drink, let alone that even with my most valiant efforts I would average about 300-400 calories per day. Obviously this is not sufficient and we are reaching a critical point. When I spoke with the doctor on Monday, after failing to be able to complete a gastric emptying study because I could not eat and keep down the required food (a fried egg sandwich on the dryest toast ever made - really, what were they thinking?) she admitted that she is concerned about my situation but that she wants to rule out everything else before she procedes to treat the inability to eat. Her reasoning is that treatment for the inability to eat, without a problem she can easily fix, is going to involve either a feeding tube or a central line for TPN depending on whether or not my digestive system would tolerate the required amount of a formula and that I am incredibly high risk for the placement of either system (more for the central line) due to my medical complexity and blood clotting disorder. I generally have a propensity towards forming blood clots too easily due to an autoimmune disorder where my body forms antibodies against my blood (Lupus Anticoagulant, a type of antiphspholipid syndrome), and so even though I have the acquired factor deficiencies right now from malnutrition I am still at risk for clots (weird, I know) and have to be treated with blood thinners. So the concern is both for bleeding during the procedure and for clotting afterwards around the central IV line or feeding tube, and of course for infection with either system since I have a limited immune system from Lupus. Have I mentioned that I am generally every doctor's worst nightmare? Yet at this point, I am forcing food into my body until it screams enough and yet that is no where near enough. To be perfectly honest, I am frightened- okay, change that to terrified. I do not want anything inserted into my body because I am very much aware of the risks it would pose and because I know that it would further change my life. I want to just be able to eat again, for the doctors to for once find a simple "we can cure this" answer and for me to nicely fit a textbook diagnosis. But I know that so far that isn't happening, and that continuing to rapidly lose weight and undergo such significant malnutrition is going to cause significant damage to my body. I can not possibly live on pureed mashed potatoes, rice cereal, cream of chicken/mushroom/tomato soup and very rarely a scrambled egg forever (and I eat one of those items per day usally). There are not enough vitamins, not enough calories, not enough protein, and not enough of anything in that to keep me going. As much as I try, and try, and try, right now I just can not make enough be enough.