I need a place to write about this stuff, so I guess this is a good place. Only 3 people read this it looks like, which is preferable to facebook.
I'm being referred back to Iowa City for my crohn's disease and I don't know what to think about it.
I've really been spoiled with a nice year-long remission. I was hoping I'd be one of those people with crohn's who has one major flare up at the very beginning, gets put on some form of treatment, reaches remission and stays there. That was the goal. I guess I've forgotten that this disease can do its own thing without my consent. It can be treated with medication, and so far I don't seem to be responding to any yet. I'm going to start another one today that has been helpful in the past.
There are a lot of things on my mind and it's all really hard to understand and try to find a way to look at it all positively. I'm going to try and write them out, see if that helps my own thoughts to be clearer.
I am not too happy to be going back to Iowa City. So I ask myself: why?
I am not happy for many reasons. In the past, many of the tests I've had done in Iowa City, the results "came back negative". They "couldn't find anything that could be wrong". I hate this answer. It leaves me feeling helpless and somewhat doomed. I understand it's not the doctors' fault, I know they really sincerely are trying to get me feeling better. I guess I just tend to relate this answer to Iowa City simply because that's where I received it the most. And I have this automatic relation now of Iowa City = No answers. My common sense knows this isn't true, there's a lot that Iowa City can do, they have so many more resources and a lot more knowledge of what this disease can do. Still.. having an unpleasant history there doesn't help.
So that's one reason to not want to go, but it's not a very good reason NOT to go. And I'm not looking for one, either. I'm just trying to make sense of my feelings and thoughts.
I'm also really tired of feeling so darn sick. This is just patience related I guess. But really all in all, I don't want this. It's all very undignified, the ways I'm sick and tests I have to go through, and I like my dignity. It's exhausting to be in pain like this. It's frustrating to barely be able to eat. Food just is not appealing at all. Everything I eat I do not enjoy. I had birthday cake this last weekend. It was tasty, yes, and cake is my favorite food, but my stomach was in protest the whole way. Everything I eat. I will feel hungry at times. It's like, if my stomach could think and talk like a person, it would say weakly every once in a while "I..need..food" and the moment I put anything in there, no matter how soft and bland, my stomach says "ohh.... this was a mistake. Please, no more."
Whether I eat or not, I'm so nauseous. I threw up in church on Sunday and have come close to barfing every day since then.
I drink Boost nutritional drinks to keep the nutrients going in me. That keeps me going, but it doesn't sustain my weight. Every time I see the doctor my weight is down a few more pounds. My pants are getting baggy. My cello feels heavier.
And the pain. That's what can mess with my head, especially with my fear of hearing the words "there doesn't appear to be anything wrong." I've feared so much that maybe it's all in my head and I'm some kind of undiscovered nut case. But then the pain comes and I know it's real pain, I can point it out and everything. And I don't like complaining about it out loud too much either, but it's one of those things you can't just keep to your self for your whole life. You know, they say pain is your body's way of telling you something's wrong. Well, I can know something is wrong but I can't do anything about it, except maybe just not eat or go lie down for a while. Emotionally though, all of this, it's tough to deal with. Pain is hard. I've learned to be tough. Some days I'm in pain, and the way I've described it is, if just 5 minutes ago I had been feeling completely healthy and normal and fine, and then right now got hit with this kind of pain, I'd be crying from the intensity of this. But over the years I've grown to be able to sustain and maintain composure through more and more pain. You can learn to ignore it, but I personally don't think pain is something that should be ignored. If I were to develop a severe stricture or obstruction, or if my appendix were to become acute, that's not something I would want to ignore. So I always have my pain sensory radar on in the back of my head. I have to. Even though it's very possible that I'll live my life with none of the above happening, and I certainly hope none of it happens (I consider myself extremely blessed that none of this has happened!), I'd rather be safe than sorry.
I just want to live my life... without this. All of this. I'm ready to be done.
I don't enjoy a single bit of this at all. I try to look on the bright side. Here's a few.. I'm still able to play my cello. Crohn's can't stop me from doing that. I can still go to school. I have a job (though that's a whole other point of stress... work is so hard feeling sick like this). I have very understanding professors who care for me. I live in a great family ward here in Dubuque, it really is one big family. The care and love from them all is wonderful and I'm so thankful for them. I also know I could still be worse off. There are countless ways on how things could get worse. And I'm just glad it's not any worse than it has to be.
Even if it was... I'd manage. I can do this.
Just not by myself is all.
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