It's been a while yet again--which has become a common introductory sentence in this blog over the last few years it seems. For the most part, my health had been good. My weight was up to an all-time high last year (without the assistance of a feeding tube) and I was feeling almost like Crohn's was a thing of the past. But I should have known better. With a chronic disease, remission does not mean "the end" no matter how long you're in it for. I'd have a few bad days here and there, but nothing really to write home about until I started having difficulty swallowing. I had an endoscopy done and all they really found was that I had been having acid reflux and needed to start taking Prevacid and then Prilosec. For the most part it cleared up, but over the last few months, I've been noticing a gradual decline. My throat has been bothering me again. It feels as though it's coated in mucus near the bottom of my throat and that there's a lump to get over somewhere in the middle when I swallow. It's a little concerning. Add to that random bouts of pain, body weakness, lack of energy, and weight loss and I'm thinking I'm right in the middle of a flare. I had some blood work done and my inflammatory markers are higher than any baseline that I've had and my insurance might not cover my upcoming colonoscopy/endoscopy. All of this stuff is just making me anxious any moment I am not distracting myself with work or some other kind of activity. It gets worse at night when everything slows down. I'm just a worrier. I don't know what's going on in my body, but something doesn't feel right. I've been especially self-conscious about my weight again. When it was up, it seemed like every time I ate anything I gained a little or at least maintained the weight I put on. I was so happy and couldn't imagine a time when I'd ever need to wear my size 0-1 size jeans again. I almost got rid of all of them, but kept a few "just in case". I'm glad I did, because I'm running out of things that fit again. Everything I wear feels like it sags off my body and I'm constantly aware of it, even the stuff that was once way too small. I try to angle my body in ways to hide the loose areas where I used to have an ass and at least somewhat shapely thighs. I'm back to feeling like a stick figure again and it's discouraging. Now as the weather is getting warmer, I'm finding it a little harder to layer up and hide myself as easily as I did in the winter months. I always joke with people saying that at any given time I have at least 3-4 shirts on (which is true, not because I always love to layer, but because it provides me with some illusory cushion). As I'm sure I've written before, strangers have never hesitated to ask me if I'm anorexic or bulimic. It's a harsh blow to my esteem, because I take that to mean that I look sick. I don't look like a healthy person. And for the last few months I think I've been in denial that I could actually be sick again. I try to make myself appear a certain way because I hate for people to think that I'm sick or that I'm choosing to lose weight and not eat as much when it's really just because I don't feel well enough to much of the time. And when I do feel well enough to eat a lot, those few meals are not going to add any noticeable pounds to my frame. I try to pretend like I haven't lost anything. I try to mask my body so that no one will notice, but I know the truth and I know I don't look the same. I know I'm not as healthy as I was last year. So I guess maybe I should just stop denying it. Maybe I should just stop trying to cover up and pretend like everything is okay, because if people start to think that I look sick, it's because I kind of am and it's not necessarily my fault. I just feel this link between weight loss and failure or judgment from anyone who wants to put their two cents in. And maybe I'm not as healthy as I once was, but it doesn't mean it will last forever. Sometimes losing it makes you appreciate it all the more when it's back.
Wednesday, July 8, 2015
Waiting in Limbo
My Crohn's hasn't been great over the last few months. It's certainly not the worst it has ever been, but it's gotten me down a little bit. The latest blow just happened a couple of minutes ago but more on that in a minute. I had gotten a colonoscopy/endoscopy a little over a month ago and the results showed inflammation throughout my colon as well as ulcers and inflammation in my stomach. This was somewhat a relief to find out because my weight started dropping and I began feeling weak and generally fatigued more often than not. And as I typically do, I blamed myself for this. I was in denial that all my clothes that I was once squeezing into were now so loose that they hung off my bony body. I wouldn't let myself believe it at first. But when it got to the point of no denial, I thought it was because I just wasn't trying hard enough to force down 3000 calories a day even when it hurt to try. I've somewhat accepted my body the way it is now--back down to about 97 pounds where it seems to settle, but I look a bit emaciated. I feel like I lose a little every day and I worry about "moving" too much. Like any little bit of cardio is going to make me shrink even more rapidly. The part that bothers me the most is that it physically hurts to sit down at this weight. My butt has absolutely no cushion anymore and when I sit on a hard seat I can feel my bones grinding against the surface. It's a little depressing.
So anyway, after reviewing my results, my new doctor decided that it would be a good idea for me to start on Remicaid to see if that would put me into longterm remission. I read up on it and while there are a lot of risks involved, an overwhelming number of people seem to achieve remission and even gain the weight their bodies never could because of malabsorption. This was great news! I could eat like I normally would and it would actually go somewhere! My doc said it would be probably a week to get my insurance's approval and that I could start within a week of that. But now, a month later, I hadn't heard anything from my insurance company until today and was informed that they had denied my request. For some reason they thought I had tried Humira (even though I've never been on a biologic before) and denied me because they thought I had failed on it. I felt crushed. It makes me feel so frustrated with our health care system, because despite all the records and proof my doctor sent to them, it's as though they're looking for a reason to deny people who are actually sick and in need of care. It doesn't make sense to me. They make it so hard to get the help you need when you need it until your illness progresses to be worse than when you started. It makes me feel awful for people who are worse of than me who are also going through the same situation and just want the chance to be well. I guess it's the business of being sick.
So anyway, after reviewing my results, my new doctor decided that it would be a good idea for me to start on Remicaid to see if that would put me into longterm remission. I read up on it and while there are a lot of risks involved, an overwhelming number of people seem to achieve remission and even gain the weight their bodies never could because of malabsorption. This was great news! I could eat like I normally would and it would actually go somewhere! My doc said it would be probably a week to get my insurance's approval and that I could start within a week of that. But now, a month later, I hadn't heard anything from my insurance company until today and was informed that they had denied my request. For some reason they thought I had tried Humira (even though I've never been on a biologic before) and denied me because they thought I had failed on it. I felt crushed. It makes me feel so frustrated with our health care system, because despite all the records and proof my doctor sent to them, it's as though they're looking for a reason to deny people who are actually sick and in need of care. It doesn't make sense to me. They make it so hard to get the help you need when you need it until your illness progresses to be worse than when you started. It makes me feel awful for people who are worse of than me who are also going through the same situation and just want the chance to be well. I guess it's the business of being sick.
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