Long Time Gone

I continue on this roller coaster ride with my health, and on December 12 was admitted as an inpatient to one of the large university based medical facilities after seeking treatment in the emergency department for rapid progression of my symptoms. Eleven days later, I was discharged home by ambulance without a diagnosis and thus, without any treatment plan or improvements. The doctors discharged me because they were unable to determine the cause, and after exhausting their medical knowledge refused to attempt any treatments without a firm and documented diagnosis. My diagnoses upon discharge were malnutrition and failure to thrive, which translates into I am rapidly losing weight and am unable to intake enough food to sustain myself and provide my body with the proper nutrition that it requires. Cause- they could not even agree amongst themselves as to possibilities; I felt like I needed to ask them to huddle up for 5 minutes and vote or something to reach a consensus. I received the ambulance tour home because the muscle weakness progressed rapidly, even while hospitalized, to the point where I am reliant upon a walker for very short distances and a wheelchair for anything beyond about 100 feet or so, and the stairs that are required to access my room at home are impossible. The journey up the stairs in the "stair chair" stretcher being bumped and swung around by the paramedics ranks among the most painful experiences of my life, due mostly to the pressure sore on my lower spine where there is nothing except skin over the deformed bones from occult spina bifida. I am trying very hard to focus on all of the blessings that I have, on the tremendous feasts in my life, but I am not Pollyanna. I would give anything to be able to sit down at the dinner table with friends and family and just eat all of the foods that I used to love without the nausea, without the gagging, without the inability to swallow anything beyond totally pureed. To go to a restaurant, to the movies, to a store, to chase my niece around and scoop her up in my arms, to go hiking again, and of course to go back to teaching my amazing and wonderful kids - this is all I want. I am 27 and have been fighting hard all of my life to achieve a semblance of normalcy that the world takes for granted. I had it. I had never felt as good as I did the previous year or so, and I savored it by exploring places, by hiking, by really getting into my love of photography, by pushing myself far beyond my normal comfort zone and becoming more confident and assured and independent. I had just about everything I had dreamed of - I was teaching children with special needs and loving the rewards of my job (if you love it so much is it a job?), I had amazing friends, I had the ability to use my body to do things I never thought possible and was in love with nature and being active outside, I had independence and confidence and my own identity was flourishing, I had dreams and possibilities and contentment. I feel like that was stolen from me by my body. I can not teach right now, I can not be active or even get outside without help, I have little independence or confidence and no dignity left and I feel like my identity has been crushed. My dreams are not of great things in the future but of simply reclaiming where I was in the past. I find myself questioning God sometimes why I had to know such joy, such amazing health and physical strength, if it was going to be taken away. This would be easier if I had never known the potential I had in this body, if I had never gotten a break from the illnesses and such because not so much would be missing right now. I feel like I have been a long time gone- not just writing here but a long time gone from who I was, who I want to be, and the life I was so thankfully living. I know that this is definitely not one of my most optimistic journal entries, but it is one of the most real and truthful and open. This is a hard journey and one that I never wanted to take; one I want to find an exit from immediately and return to a steadier, healthier, clearer path. I want off this roller coaster, and I would like a refund because this is not the ride I waited in line for. But I will sacrifice the refund if I can just get off the roller coaster and on to something like the merry go round or the swan boats or the ferris wheel. It is exhausting trying to act positive and not frustrated and angry constantly because I do not want to make those around me feel any worse about this or any more uncomfortable. So I lie, I act, I pretend, I say what they want to hear when really I am angry that this is happening, I am frustrated that I have no control over it and that no answers have been found, and I am sad for all that it feels like I have lost. I think these are absolutely normal and valid feelings, but I protect others from them to try to make this as easy as possible for them and be less of a bother or burden. Being strong all the time isn't easy - never crying if anyone can hear or might find out, never admitting fear, never showing anything but a smile, always using humor to put others at ease and lighten the situation. I wish on every single star in the sky tonight that I can just be a healthy, active, independent, confident, joyful 27 year old teacher again very, very, very, very soon. That has indeed been a long time gone.

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.

Simple Joy

I have been having a difficult time getting excited about Christmas this year. Right now I am not certain I will be able to be with my family for Christmas, I am pretty certain that in such a short time we will not have found an answer and treatment that will have me able to eat or feeling significantly better, and I hate even the idea of missing out on so many precious family memories and traditions. Yet today after a "long winter's nap", I awoke to discover that the friends I live with had begun to seriously decorate the house for Christmas. They make just about any other interior Christmas decoration attempt look pathetic with their incredible collection of ornaments from around the world and at least two trees on display each year and anything else you could think of. Then I discovered that while I was sleeping and dreaming of my cold, wintery Northern home it had begun to snow here - real stick-to-the-ground-and-tree-branches snow! Yes, I celebrated and laughed and was delighted at what will add up to no more than an inch of snow because this Yankee needed that taste of home so badly, and snow this early is not that common. Then my friends offered one of their many Christmas trees for me to have in my room, a small perfect-for-my-room sized Christmas tree and they then supplied everything I would need to decorate it. Christmas arrived literally on my doorstep and in my room today in ways I never expected. I have the most beautiful tree situated on a low coffee table at the foot of my bed lit with lights that are designed to resemble the old fashioned candles that were first used on trees, a handmade cornhusk angel atop the tree, and an assortment of gorgeous antique ornaments sparkling on the tree. Anyone who truly knows me knows that this is the perfect Christmas tree for me. Growing up my favorite ornaments were always the antique ornamets we had, the ones my mom thought were ugly compared to the perfect new bulbs and such but that I insisted were far superior. I adore candle light and one of my favorite traditions growing up was the candlelight Christmas Eve service at church. And I adore things that are handmade, old, and have a history to them. So where I had given up on finding any real joy in this holiday season, I unexpectedly found a wealth of simple joy. The joy of completely unexpected and unpredicted snow that gave me a sense of the home I miss so much and a taste of thousands of memories. The joy of a small, simple Christmas tree of my own to offer beauty and light and a collection of Christmas memories and hope. Where I thought I might very well have nothing, enough is quite a feast.

Enough is as Good as a Feast

The name of this journal/blog comes from a quote that I found that simply states that enough is as good as a feast. It seems slightly ironic right now because over the past two months I have become virtually unable to tolerate eating solid foods and so the idea of a feast is comical to me. Victory is eating and keeping 1/2 cup of pureed mashed potatoes or 4 Tablespoons of infant rice cereal mixed with milk or a cup of cream of chicken soup. A table spread out with food right now would be overwhelming and frustrating to me right now, a representation of what has been lost almost overnight and what I am afraid I may never access again. You never realize how many social events and activities center on eating and sharing food until you can not eat. Then I realized that a feast can be so much more than food, it can be symbolic of an abundance of anything we desire in life. "More" is the key word in society today - always pushing for more, driving to achieve more, obtain more, have more, be more. So when you can not keep up with that frantic pace, when you can not get that elusive more, you begin to feel like a failure. But instead of wasting our lives struggling to achieve a "more" that we will never capture (a goal that moves each time we get closer), we can be content with having enough and realize that our enough is as good as any feast. Over the past month I have fallen farther and harder than I would have ever imagined possible, from the significant rapid onset new medical issues to severe depression that led to suicidal plans and 11 horrific days inpatient in a psychiatric hospital. What I can see now is that I am such a perfectionist that I can not be content with anything that I do because it is never "good enough", and I am always a failure in my own eyes. I even consider myself a failure or "less than" others because of the fact that my body is unable to function properly and so I can not keep up with others in the ways that I so desperately would like to be able to. Now I am realizing that being perfect is highly overrated and that enough is better than perfect - it is real, it is human, it is attainable, and it is as good as any splendor created in an illusion of perfection. So now like a phoenix rising from the ashes of my own incineration I am slowly piecing my life back together and learning that as long as I have enough I have everything I need. Now if I could just figure out how to make a feast from potatoes and rice cereal...