- Joined
- Dec 20, 2012
- Messages
- 764
I find myself forced to not think about the future because it holds nothing good.
I thought I had hope when I got out of high school I was healthy doing well, and got into the college of my choice (which was a joke).
During college my symptoms worsened, I developed my first case of abscesses which hit me on each of my butt cheeks, in a place where the only sitting options are hard plastic chairs.
That's a whole story of its own but ancient history so I'll just leave it at that, I've had many abscesses since and learned better management (which is to say, calling the surgeons sooner).
Furthermore my diarrhea picked up from sporadic to constant and stomach pain became a pressing issue.
I got out of college and was in and out of job search based on whether or not I thought I could handle working in my condition, it was a constant dilemma because I wan't sure if I was sick enough or not to take the disability root or if I should stick through and find a real job.
For better or worse my condition deteriorated and I sought disability, I dropped weight to 99 lb.s at 5'11 which I hadn't had happen since pre-diagnosis and was puking everything, suffering constant pain and an ulcer, when finally I discovered gluten intolerance.
I was good for a while, then all the symptoms came back, turned out it was the whey protein I was taking as a calorie supplement was making things worse, but my doctors didn't seem to take me seriously, despite the fact that stopping it cured most of my symptoms and my ulcer.
At this point I thought I was done managing my diet, though I had constant diarrhea and couldn't figure that out, and still managed occasional cramps. I found out this was caused by high fructose corn syrup which is extremely prevalent in many foods from sweets and candies to ketchup (which I was eating often).
After this I was good for a while but still would have motility issues, complete stopping of digestion and bloating, my stomach became enlarged and distended. I figured out it was oils and now I think I've finally figured out everything, because there's almost nothing left to eat.
Well throughout this whole ordeal I felt pressured by my parents to... well I don't know pretend that it's not happening? As I'm forced to live at home they often cook dinner and would act frustrated when I turned down food that doesn't agree with me, especially if it was "I don't know why it doesn't agree with me it just does." or when I'd find something new, tell them and then next thing I know they're putting black pepper on my food when I just told them I figured out I can't tolerate it. "Well you ate this last week and you were alright."
NO. No I wasn't, that's the entire point. Sometimes I don't know what caused it until I look at trends in my eating habits. Sometimes it takes a while to figure something out and just because I ate it in the past doesn't mean it was fine.
It got to the point where I was paranoid thinking my parents were throwing things in my food I had said I can't eat just so if I didn't get symptoms they could call me out on it later. Most likely this wasn't the case but the complete disregard for my personal comfort and health sure made it seem like it at times.
My dad has been given a catch-all IBD diagnosis, it's very minor but he can't have things like onions, and because of this for a long time he would go with the, "Well it doesn't bother MY stomach." logic that, therefor it shouldn't bother me either. It was all I could take not to go completely and violently berserk at times.
It's like at every corner they were fighting my attempts to make myself better, even when I would say "I think I should try avoiding this food to see if it helps" it was like my mother would try to talk me down because my options were dwindling. Well it doesn't matter what I eat as long as it doesn't make me sick, I'll eat rice 24/7 if that's what it takes, but she just wouldn't GET that and would buy these foods packed with flavor and seasonings that were a complete gamble and 99.999999% of the time I'd end up sick after saying over and over just make me bland food I don't want to be sick anymore.
Well now that I know pretty much all the things that effect me and how, I can always tell if not by the label, then by the effects what it is in the food that did me in and I can tell them outright not to make it for me. I don't mind cooking for myself, in fact I prefer it because I can do it how I want and it's always safe, but then they get frustrated if they cook something 'for me' and I turn it down to be cautious and I feel guilt tripped into eating food that makes me sick.
What this boils down to is my best option is moving out, and I can't because I'm too poor to do it.
I still have college to pay for, a college that was a complete sham and taught me nothing and was so bad they went out of business the year I graduated. I have medical bills to cover for my doctor visits, and a huge deductible on a scan I had last year still going and finally got a few old ones from my child doctor paid off.
I'd really like to live a normal boring life and get a job but if I mess up my diet just a little I can easily lose 6+ hours of sleep over it because I'm up on the toilet all night. Then when I'm completely nocturnal my parents treat me as if I'm lazy or weird or something for 'choosing' to sleep all day as if I have a choice other than "When my stomach lets me sleep, I do."
I'd also really like to gain some weight and stop looking like a skeleton. Recently I've seen great promise in this, I lift weights every day and eat as much as I can and have gained about 15 lb.s from where I started and a lot of muscle but have a long way to go before I even look normal at 129 lb.s
I planned my life to just live simply and have a boring job and come home and play video games and instead I got an illness that lets me play video games all day, and then all night because I can't sleep. I guess it's a blessing in disguise? I'd give it all up to be able to eat Taco Bell again...
I thought I had hope when I got out of high school I was healthy doing well, and got into the college of my choice (which was a joke).
During college my symptoms worsened, I developed my first case of abscesses which hit me on each of my butt cheeks, in a place where the only sitting options are hard plastic chairs.
That's a whole story of its own but ancient history so I'll just leave it at that, I've had many abscesses since and learned better management (which is to say, calling the surgeons sooner).
Furthermore my diarrhea picked up from sporadic to constant and stomach pain became a pressing issue.
I got out of college and was in and out of job search based on whether or not I thought I could handle working in my condition, it was a constant dilemma because I wan't sure if I was sick enough or not to take the disability root or if I should stick through and find a real job.
For better or worse my condition deteriorated and I sought disability, I dropped weight to 99 lb.s at 5'11 which I hadn't had happen since pre-diagnosis and was puking everything, suffering constant pain and an ulcer, when finally I discovered gluten intolerance.
I was good for a while, then all the symptoms came back, turned out it was the whey protein I was taking as a calorie supplement was making things worse, but my doctors didn't seem to take me seriously, despite the fact that stopping it cured most of my symptoms and my ulcer.
At this point I thought I was done managing my diet, though I had constant diarrhea and couldn't figure that out, and still managed occasional cramps. I found out this was caused by high fructose corn syrup which is extremely prevalent in many foods from sweets and candies to ketchup (which I was eating often).
After this I was good for a while but still would have motility issues, complete stopping of digestion and bloating, my stomach became enlarged and distended. I figured out it was oils and now I think I've finally figured out everything, because there's almost nothing left to eat.
Well throughout this whole ordeal I felt pressured by my parents to... well I don't know pretend that it's not happening? As I'm forced to live at home they often cook dinner and would act frustrated when I turned down food that doesn't agree with me, especially if it was "I don't know why it doesn't agree with me it just does." or when I'd find something new, tell them and then next thing I know they're putting black pepper on my food when I just told them I figured out I can't tolerate it. "Well you ate this last week and you were alright."
NO. No I wasn't, that's the entire point. Sometimes I don't know what caused it until I look at trends in my eating habits. Sometimes it takes a while to figure something out and just because I ate it in the past doesn't mean it was fine.
It got to the point where I was paranoid thinking my parents were throwing things in my food I had said I can't eat just so if I didn't get symptoms they could call me out on it later. Most likely this wasn't the case but the complete disregard for my personal comfort and health sure made it seem like it at times.
My dad has been given a catch-all IBD diagnosis, it's very minor but he can't have things like onions, and because of this for a long time he would go with the, "Well it doesn't bother MY stomach." logic that, therefor it shouldn't bother me either. It was all I could take not to go completely and violently berserk at times.
It's like at every corner they were fighting my attempts to make myself better, even when I would say "I think I should try avoiding this food to see if it helps" it was like my mother would try to talk me down because my options were dwindling. Well it doesn't matter what I eat as long as it doesn't make me sick, I'll eat rice 24/7 if that's what it takes, but she just wouldn't GET that and would buy these foods packed with flavor and seasonings that were a complete gamble and 99.999999% of the time I'd end up sick after saying over and over just make me bland food I don't want to be sick anymore.
Well now that I know pretty much all the things that effect me and how, I can always tell if not by the label, then by the effects what it is in the food that did me in and I can tell them outright not to make it for me. I don't mind cooking for myself, in fact I prefer it because I can do it how I want and it's always safe, but then they get frustrated if they cook something 'for me' and I turn it down to be cautious and I feel guilt tripped into eating food that makes me sick.
What this boils down to is my best option is moving out, and I can't because I'm too poor to do it.
I still have college to pay for, a college that was a complete sham and taught me nothing and was so bad they went out of business the year I graduated. I have medical bills to cover for my doctor visits, and a huge deductible on a scan I had last year still going and finally got a few old ones from my child doctor paid off.
I'd really like to live a normal boring life and get a job but if I mess up my diet just a little I can easily lose 6+ hours of sleep over it because I'm up on the toilet all night. Then when I'm completely nocturnal my parents treat me as if I'm lazy or weird or something for 'choosing' to sleep all day as if I have a choice other than "When my stomach lets me sleep, I do."
I'd also really like to gain some weight and stop looking like a skeleton. Recently I've seen great promise in this, I lift weights every day and eat as much as I can and have gained about 15 lb.s from where I started and a lot of muscle but have a long way to go before I even look normal at 129 lb.s
I planned my life to just live simply and have a boring job and come home and play video games and instead I got an illness that lets me play video games all day, and then all night because I can't sleep. I guess it's a blessing in disguise? I'd give it all up to be able to eat Taco Bell again...
