Monday, December 22, 2008
Wednesday, November 12, 2008
Today is one of those days where I wished I was dead. I feel worthless. I need money but I can't get a job. I hate being sick. It could be worse I guess... I hate being lonely. Today the pain isn't Ulcerative Colitis. Its in my heart. Is this how its going to be? Am I going to be lonely forever? I hate being depressed. I don't feel like doing anything.
I don't feel social today but I want attention. I still don't feel like doing anything. So restless. I want to talk to someone but I don't feel like moving my mouth. Its too much effort.
I just watched American Psycho. I feel even worse than before. I want to eat my sorrows away. I am craving dried mangoes but we don't have any. I could go out and get some but there are several reasons why its wrong:
1) Its too hot outside
2) I don't have any money
3) I'm not even supposed to eat them
Maybe I'll just go to sleep. This would be my second nap of the day...
(written later the same day)
I tried to take a nap but its not that kind of tired. I'm almost certain that my pills make me feel crazy. My hair is falling out because of the pills. I feel so ugly. I'm scared and I just want things to change.
Here's a bonus retro entry while I can spare the time. hehe Slowly I'm figuring out this blogger thing so I'm happy to announce that I fixed the comments box. So now if you want to leave a comment on my blog, all you need is a google/gmail account. And I think by now everyone has one. You don't have to exclusively be a registered user to blogger in order to post.
I went swimming this morning with my friend. I like swimming a lot because it doesn't feel like exercise. I'm home now and feeling kinda weird. My Dandy Warhols CD is spinning in my CD player that doubles as a clock/radio. My medicine is making me feel drunk again. Its also making my hair go thin and fall out. I feel ugly.
I wish my eyes would focus and I'd stop feeling dizzy so I can clean my rom. I don't even know what to write anymore but I want to keep writing. I want to write something clever.
Anyway, here is an entry that I wrote while I was still taking Prednisone and when I was at my lowest recorded weight. This medicine gave me the munchies and made me feel like I was drunk all the time, and also gave me insomnia. It wasn't fun at all, except for the shopping...
Originally written on 7.30.2005
Blah, my body is so weird now. I mean, its kinda cool that I can wear clothes that hug my body more, but I feel so awkward with this sudden change. I'm not sure if I like it. I liked being curvy. I'm starting to get used to it as the days pass. I've had to relearn how to walk. Being confined to the bed for the last few weeks killed the circulation in my legs. They feel so stiff, as if they had aged one hundred years. I look like an old woman when I walk. These staggering steps as I hold my back with one arm. Its dreadful. My mom has been so supportive! How can anyone be so loving and unselfish?! She encourages me to walk and holds onto my arm very gently. I try to walk independently when I can.
I've had to get a whole new wardrobe! Nothing fits me anymore.... All my cool clothes has to be adjusted or given away. But what better way to motivate me to walk than to get all new clothes! haha! My mom took me shopping a few times. I got two new pairs of jeans (Size 1 and 2. I used to be a size 7-9), a fancy striped pink blazer, lots of new pajamas, a few dresses, and I even had to get all new underwear! ha! I love trying on stuff, but my mom has turned me into a doll! She likes having me dress in these clothes that she even wanted to assist me in the dressing room! "No way Mom! I'm a big girl now. haha!" Its only because I am so frail.
I've been keeping watch on my weight. Its way too scary! There was progress last week, I was initially 94 lbs, then dropped down to 92 lbs. The next day, I managed to get to 95 lbs. But then... the day after that (which was yesterday), I went down to 91 lbs! WTF?! My metabolism is burning at an alarming rate! I was so annoyed because ALL I DO IS EAT. I'm sick of eating but I have to. I don't even want to see food anymore. Its annoying because I have to eat like every hour. I'm not working or anything, so I can fully dedicate my time to my diet, but still! I want to do other things. And its not like I'm just eating, sometimes I feel dizzy, hungry, my stomach is hurting a lot, and I still have to prepare my food. Its a moral dilemma because, I have to eat, but is it worth getting up? I have to because otherwise, I will just feel worse. And its not only that. I have to drink lots of liquids, so when I'm not in the kitchen, I'm running to the bathroom. I'd like to watch a DVD without having to get up six times in the middle of it. I know I'm complaining a lot, but I've never been happier. The pain is minimal these days. Thank goodness!
Tuesday, November 11, 2008
I feel terrible that I didn't even have enough time to update my blog... but I'll make up for it. I think I owe you four RETRO entries. So I'll release these when I can.
This particular entry is pretty gruesome because I was at the beginning of recovering from a flare and I got TONS OF GROSS side-effects from the medication. I'm not going to edit the gross parts because I feel that its important for you to know this information. Especially if you're wondering if you're the only one this is happening to. Or, to see what kinds of possible side
effects there are. This was an extremely difficult time for me. I was in very poor health physically and mentally and managed to write some of it down. This is from my personal experience:
Another beautiful Day! I embrace each pasing day like sunshine. I am happy to be alive. I'm not in good shape but I am at the very least, alive. I was thinking yesterday how I am incredibly lucky. Even after this horrific experience, it is safe to say that I will recover and hopefully be normal. I mean, what if there was permanent damage? I would be devastated if anything happened to my hands, my eyes, my brain! What else would I be living for? How can an artist create anything without the tools? I am so lucky.
The other day my two friends stopped by to visit me. Its very nice of them to do so. I'm here stuck in the house, pretty much confined to one room. I had almost forgotten what the rest of the house looked like. My dad took one of the plants to site outside. It makes the living room look weird but more spacious. Anyway, when they came over, we watched the movie, Swingers. Its very clever and witty. But I missed most of the movie because I had to take frequent bathroom breaks. I told them not to stop the movie for me because I didn't know how long it was going to take. Otherwise it would take forever to finish the movie and I tire easily. They bought me a shirt to cheer me up. Its light blue and has a pixelated monkey that says: Monkeys are good people. Its a small but it looks huge on me because I lost so much weight. I am 94 lbs the last time I checked. And that was on a full stomach.
My body looks disgusting. My arms are thin, my breasts are gone. I lost a lot of fat and muscle mass. I'm dangerously thin. I feel so brittle. My mind is active but my body feels like it is one-hundred years old. I may look thin, but I have a pot-belly because my insides are swollen... its probably distended too because I am in starvation mode. My thighs and calves have gotten significantly thinner. I've been battling thunder thighs my entire life. My calves feel very hollow and I feel like I have too much skin. Its as if I was deflated.
I've always had body image issues. Although I was never overweight, I was always treated like a chubby girl, especially from my family. Its the worst! I never felt like boys took notice of me and it didn't help that I never looked my age. I was a late bloomer. But anyway, its strange being able to see perspectives at both ends of the spectrum. I've always wished to be thin and now that I have reached this point, I don't like my body. I lost my butt and it feels like my bones are pressing against the seat when I sit down. It hurts! I want my old body back...
I am on heavy medication. I take Cipro and Metrocil - those are antibiotics. I am back on a heavy dose of prednisone, a steroid. Something else to protect my stomach from all these pills and last my maintanence drug - Colazal. Yuck! I am starting to get side effects too. Prednisone gives me headaches and makes me dizzy so walking around is even more difficult with this weak body. I also get insomnia. The antibiotics killed everything in my body and now I have a fungus infection called Candida. All of these white tissue things developed all over my mouth and tongue. Its like having a yeast infection in my freaking mouth! I hate this :(
Thursday, October 30, 2008
The next few entries are interesting because I wrote these after I was recovering from my second major flare up. That was the worst time in my life!! This is where I lost so much weight that I was confined to a bed for 3 weeks because I was too weak to walk. There's a huge gap of space between this entry and the last retro entry because I was too weak to write anything down. I wish I did... but I physically couldn't. So anyway, please read below:
Wow! I'm not dead! I really thought I was going to die. I have been in so much pain because my Ulcerative Colitis flared up. I cannot believe I am still alive after all that I have been through. I am still in bad shape but it is safe to say that I will recover. Slowly, but I will recover. I am 94 lbs right now. I'm not sure if this is my lowest weight because I was too weak to weigh myself before. I have almost no fat and lost a lot of muscle. I'm skin and bones! Its painful to move but I am alive. I lost so much weight through dehydration and the many bouts of diarrhea. Before I got my flare up, I think I was about 108 lbs. This stupid illness is disgusting and painful. I hope this is the last time it ever happens. I am young and can still fight this off, but if from a few years from now... if this happens again, I maybe not be so lucky. The pain alone would surely kill me. The pain feels like a combination of doing 1,000 sit-ups, getting hit in the stomach with a baseball bat and the feeling of someone scraping my insides and pouring salt into the wound.
Monday, October 20, 2008
Tuesday, October 7, 2008
There's a huge gap in time between this entry and the last entry (which was dated in November). I did write stuff in between that time. But some of that stuff was either not related to colitis or too personal for me to share. So I'd rather not write about it here. Please understand.
Anyway, this entry is about the beginning of a third major flare up for me. I think this was the worst one I've experienced in my life. At the time, I was on the SCD diet, but was not on it faithfully. Also at the time, I went back to work full-time prematurely PLUS I had a solo art gallery opening to prepare for. So on top of my poor health habits, I was super stressed out!! It isn't easy having UC... The only way I've been getting through this is just taking it one day at a time.
I stress myself out because I'm unhappy with my situation (I still am). I really hope that someday I can make a living making art... but this is ALWAYS at the cost of my health. I'm always taking art jobs/internships on top of my existing day job. With more time spent working and commuting, I have less time to focus on my diet and health. But this is the way it has to be if I want to get a better job. A better life...
To date, I've been through three major flare-ups. And this retro entry describes the begining of the third one:
I need to be cured or just die. There is no room for anything in between. I'm tired of diarrhea. I'm so exhausted. I am missing too much work. I am missing out on life. This disease is seriously putting a dent on my self-esteem.
Sometimes I wonder if I'll just die the next day. Maybe that would e a good thing. At least I wouldn't have to worry about diarrhea anymore. I hate diarrhea. I've had it for about two weeks straight. No one understands what this is like. Not only is it inconvenient to keep running to the bathroom. But the pain is unbearable and not only does my stomach hurt... but so does my back [from exhausted bowels]. Some days I force myself to go to work so I can trick everyone into thinking that everything is normal. But its not. I suffer with stomach pains and disappear to the bathroom for 20 minutes so I can crap my brains out. Just thinking about it is making my stomach hurt. If only I had something to live for. I'm so negative about this. I don't feel like I have a will to live anymore. If I die, I die. And that's it.
I feel like I can't do anything with the way that I am. How can I work a job if I can't show up? How can I work if the only relief I get is from lying down for a few minutes? I can't lie down in the middle of the floor in the office.
I can't meet new people. The consant diarrhea makes me paranoid that I smell like ass. I don't want to smell like a public toilet. My food restrictions suck. I can't go anywhere for a long period of time. I never know how I'm going to feel. Sometimes the pain is crippling.
Wednesday, October 1, 2008
Been so busy and stressed out that I'm losing weight and sleep over this. *sigh* Its a weird coincidence because the retro entry that I'm about to share is about body issues.
Before I was diagnosed with colitis, I wasn't fat, but I wasn't skinny either. I was always somewhere in the middle but always wanted to be thinner than I was. Now that I have UC, I've been able to stay at the same weight. These days its actually hard for me to gain weight. Mostly because if I eat too much I'll get a stomach ache. To avoid that my meals are always small and frequent. This method keeps me the same.
Yay! I'm getting skinny. I'm down to 105 lbs and I've been able to keep it off so far. But I still feel fat. I don't have a flat stomach yet. I'm going to have to work on that. The best part is that now I'm able to fit into all my old pants. I haven't worn some of these jeans since 1997. haha! The bad part is that my boobs shrunk. :P Oh well... I can't win them all. I've been on my recovery diet (SCD diet) for about 2 and 1/2 weeks now. Its pretty difficult to follow. I'm only getting the hang of it now. Its really teaching me a lot about time management. I can only eat things that I prepare. It sucks when I want to snack on something. Its not like I can just open a bag of chips. I hope I keep this weight off.
I had brunch today and it was really pleasant. I had eggs in toast with roasted tomatoes, mushrooms, and asparagus. I didn't eat the toast. And yay! The food I had at brunch didn't bother my stomach!
Afterwards I went shopping. I bought some cute things but ended up spending $130. Yeesh... I had fun and haven't been out in a while Money is starting to get tight because I cut my hours at work. I need to be careful with my spending.
Man... right now I'm so hungry. My stomach is like a bottomless pit I swear! I don't want to keep eating because I like the weight I'm at now. Blah... oh well.
Wednesday, September 24, 2008
I drink peppermint tea because its supposedly supposed to aid in digestion as some natural herbal remedy. I don't particularly like it. It tastes like stale ater with a hint of toothpaste. Its disgusting when its warm. But I will try anything to make me better.
I'm home from work again. I can't believe that my disability is acute diarrhea. Its kind of amusing if you think about it... but it still sucks.
My weight is slowly creeping back. I am at 110 lbs today. I'm secretly liking my new slimmer self. But all that weight was probably water loss only.
I snuck out of the house this moring to do errands. Its the first time I've been out of the house by myself in two weeks I think. I went to the grocery store. There was an incompetent woman at the register that wanted to give me seventeen singles in change because her supervisor wasn't there. She kept me waiting fifteen minutes. Its very annoying especially when a diarrhea episode could happen any minute.
But I also did a good deed today. Unfortunately my hamster passed away recently. I went to the pet shop to donate the leftover food for them to use in their store. Nothing was wasted.
Friday, September 19, 2008
I really need to get more sleep.
Sleep is another issue... I would lay in bed and be awake for more than an hour. Then finally I fall asleep but wake up in two hours... Its awful. I found out what's causing this. I was taking cold medicine and I think one of the ingredients was keeping me awake. It happened the two nights that I took the medicine and I'm not going to try it again.
Tonight I'm going a little more natural. I'm going to gargle with salt and warm water for my sore throat. And use some lavender scented lotion to help me fall asleep.
augh... i'm so late on my deadline... soon this over-working nightmare will end... Ahh! But you know what? If the opportunity ever came again... I'd probably do the same thing that I'm doing now. Its really stupid at the cost of my health... but I'll explain why in a future video... If I ever get around to it. This second job seems endless. But anyway, there's a really good reason for this madness. It needs to be kept a secret though. Sorry. I'll eventually tell you though. Oh! The suspense! What is Fernpixel plotting?!! Bwahahahaha!
Wednesday, September 17, 2008
The videos will come eventually. Just keep watching for it... but at the very least I'll be updating my blog more frequently.
And now its RETRO time!
Ulcerative Colitis is a debilitating disease. What is the doctor's attitude towards it? Here you go:
Take your medication and deal with it. Its lifelong.
Hm... sorry that answer is not good enough for me. Today is another bad day. I spent most of the night uncomfortable and constipated. When I finally went to the bathroom I could not sleep.
I really wish I could clean my room but that requires a lot of bending down. The pain today is awful and I don't want to crumple my abdomen. Even sitting in a chair for a while is painful. I am dying to go outside for a walk to stretch my legs at least.
Monday, September 15, 2008
Anyway, I've been itching to make new videos, but I still can't because I had to extend the deadline on my second job. blah... I know excuses/excuses.
I guess I could at least let you guys know what I plan on making videos about. This is so I won't forget, and this is also your chance to send me requests. I'll get to them as soon as my second job is OVER!!! ahhh!
So anyway, this is what I have planned:
• SCD yogurt using commercial starter
• Mediterranean inspired grilled veggies
• 3 part series explaining the different kinds of surgery for colitis
• Exploring the dynamics of how colitis effects relationships
I think those are pretty good topics. I'm also on the fence about whether or not to make a Fernpixel FAQ... because I do get a lot of the same questions. I don't really mind... but the one thing I seriously do get annoyed with is when people ask me about my medication. I mean, I list the kind of medication on the side, I mention it on the video, I show the name and the kind of pills in the video. And I show that I'm swallowing the pills!!! What more can I possibly tell you about my medication if its all there? ahhhh!!!
uh... ignore that freak out moment lol. Ok, so if there are any requests. Please comment or leave me a message on YouTube.
Thursday, September 11, 2008
(originally posted October 24, 2004)
I realized that my air is thick and healthy once again. Three months ago I had to cut it very short because the side effects of my previous medicine, Asacol, was making it fall out and go thin. I am on a different brand (Colazal) at higher doses. I'm afraid that it will happen again. I was really hoping to have long hair again too.
A milestone happened tonight. For the first time in over a month, I had some firm S!! I've been suffering bloody D all month. My S is nothing close to normal, but its looking like progress.
My parents are very concerned with my health. I am thankful for their efforts in supporting me, but I also know that they are scared. I wonder if they think I'm dying?
I have a very high tolerance for pain, but this kind is so constant, it bears down on me so hard. I don't know if my body can continue. I'm so scared that I might not even wake up the next morning.
Wednesday, September 10, 2008
In my last "retro fernpixel" entry I mentioned that during a flare-up I didn't leave the house in more than a week. There was another time when I was confined to a bed for three weeks because I lost so much weight that I couldn't support myself to stand up and walk. I can tell you that my mental state at the time didn't feel right. Along with all the prednisone, insomnia, and starvation came paranoia. I think I started worrying everyone. My mom thought it would be good to get some fresh air so we went out and got some groceries and she also bought me a Betta fish!!
I'm not sure if any of you saw that Tom Hanks movie. You know, the one where he gets shipwrecked and he had his friend "Wilson". I felt almost the same as his character. I was alone a lot while my family was at work. I kept the TV on all the time just so it wouldn't be so quiet.
If you're feeling a little weird because you've been sick too long, I would highly recommend venting out your feelings in a journal. Or, if that doesn't suit your needs, take the responsibility over something alive, like a plant or a small pet. It makes a world of difference just to have something moving around to change up your routine. A dog or cat would be better... but my housing situation doesn't allow me to have any :(
I picked a fish because it was the easiest to care for in a small 1 gallon bowl. I would've loved to have a hamster, but I knew I wouldn't be able to lift the 20 gallon aquarium when it came time to cleaning the cage.
My fish kept me company for almost a year during my worst times. But then he fish passed away a few years ago when the weather started getting cold. I was a little devastated... ahh, I have fond memories of that little fish.
So pets and plants are a-ok!! Just make sure you can be a responsible owner too.
hm... I kinda miss having a fish around... I might get one when my second job is over.
Sunday, September 7, 2008
(originally written October 24, 2004)
Yesterday marks one entire year since I've been working at ______. I feel bad because I only planned on working there for only 3-5 months. I anticipated getting a real career much sooner. That day still hasn't arrived.
Technically, I haven't been working there for a whole year. My time off of for vacation and mostly sick days, totals to about 60 working days. In fact I have been home all week because my ulcerative colitis has gotten bad, no wait, the doctor said it became worse and now we are waiting on the biopsy results. It may have even graduated into Crohns Disease. That means that my small intestines may be effected now. Its been progressing so fast.
I have a new doctor and my aunt works for him. I remember his name because it sounds like an Italian bread.
My colonoscopy was on Wednesday. They made me drink one gallon of laxative the night before. Of course I didn't even finish half. Who can finish a gallon of laxative in 3 hours?! I lied and said I did only because I don't want to go through with it again and postpone the procedure. What did I do with the extra laxative? I dumped it into the neighbor's yard and threw the container in the recycling bin.
Anyway, my aunt assisted in the procedure. And when it was over they said that my intestines looked so raw they were afraid to see how far the damage was. My aunt even said that, "I've seen bad ones, but this might be the worst I've ever seen".
But what went wrong? In June-July I thought I was cured! I had normal stools. I was eating good. But now, I've had bloody D for ever a month!! Its incredibly painful.
My medication is 60 mg of prednisone. Its a steroid I wish I didn't have to take. There are so many side effects including dizziness and weight gain and "moon face". Moon face is when your face gets swollen. None of that has happened to me yet. I've only been on it for a few days.
I am also taking colazal. Its a mesameline that is an anti-flammatory. Side effects: abdominal pains, cramping and D. Diarrhea as one of the side effects... lucky me... If only I could just stop the diarrhea. Its annoying and embarrassing! How am I supposed to meet people this way? I can't even leave the house! I will go mad! I have no idea of what my dosage is. I believe it was something like 750mg of colazal, but I need to take 12 pills a day. A fifteen day supply already costs $400... I need some sort of income soon... I might lose my job because of my absences. Its looking pretty bad. My job is only enough to cover the cost of the medicine... barely. Its such a dead end. I need to stop getting sick like this.
In addition, I'm trying a new diet that's supposed to cure my intestines. Its called "the specific carbohydrate diet" SCD for short. I've been on it for less than a week. I don't notice that many changes but at least the gas has gone away. The gas smelled so bad I wanted to die. I think the food I was eating was only rotting inside of me.
With this new diet, its not easy at all. I need to make all of my own meals and make sure the ingredients don't have any additives that will make me sick. I'm not allowed to have starches and sugars. That leaves out bread, most cheases, ice cream, milk, potatoes, candy... for the most part, I am allowed to have fruits, meat, poultry, seafood, eggs, and vegetables. This is really different from the "low residue diet". Actually its like the opposite.
All of my meals look like they will be bland. I can't have things like ketchup because even in that they add sugars and starches that I shouldn't be eating.
Its very hard right now because I'm not really in any condition to walk around or drive. So I depend on my parents to buy my food. And, if they don't get around to it, I don't get to eat.
No job, no friends, no health, no will, no brain...
I just took my medicine [prednisone]. The trick is to not let it touch your tongue or else it will taste bad. I hate taking all these pills.
I spend my days watching a lot of anime and DVDs. And when I feel better to sit down for a long while, I chat or "window shop" on the internet. I need to rest myself and learn to relax. Slowly I am cutting away everything in my life. Its quite sad but I am alone anyway.
Today is one of the bad days. My legs are weak and I have a lot of abdominal pain. Today is one of those days where I stay in bed and only get up if I have to. I'm very bored and very lonely. I haven't been out of this house in about ten days. If it weren't for the D, I probably wouldn't shower either (its too painful to get up). But the D always makes me feel dirty. I still feel unclean after a long hot shower.
I live one day at a time now. Its terrible when there is nothing to look forward to. But there is no way of me knowing how I'm going to feel. I wish I was normal.
Tuesday, September 2, 2008
Anyway, I owe you another retro fernpixel entry... please keep in mind that these were written back when the times were tough and my symptoms were at their worst. So, a lot of them were really negative. I honestly feel a little embarrassed sharing these with you guys, but I think its important for you guys to hear me out. I know I look like everything is ok since I'm in remission, but I still struggle daily. I started out like all of you with the symptoms, so you're not alone.
p.s. I'm using abbreviations for some things like diarrhea, blood, etc... because those words are gross. I don't want to see anything like that coming out of me or even in word form. hehehe
p.p.s. Since I owe another entry to make up for last week, I'll probably post another one tomorrow night or Sunday... or whenever hahaha, but just look out for it ;)
(Originally written September 26, 2004 1:44am)
I seem to only write when I am frustrated. I really wish I could change that. I have plenty of nice days but I guess on those days I'm too busy having fun to document it. Anyway, all this week my symptoms have been coming back. I have been off my anti-flammatory medication for quite some time. I started back on my pills this Wednesday. I am taking colazal now. The dosage is higher than asacol. I require 9 pills a day. The week was awful. I have severe D again, I was also bleeding M and B with the D. Its so scary. And the smell... the stench is as if hell opened its gates. I don't think I'm even digesting my food correctly. That smell, that awful smell... I think the food is rotting inside of me. I've already decided that I am dying. Over the past few months, I have had no motivation. I mean, what does it matter if I'm dying right?
I hate this obsession that I have of thinking that I'm going to die young. But isn't all of this suffering some sort of proof? I've always been in poor health. I don't even think I'll live to be 30-years-old. Maybe I won't even get married. With my body in such a sorry state. I've even gone as far as to not even considering having children. It would cause me and the child a lot of suffering. And I shouldn't be allowed to pass on such pathetic DNA.
Tuesday, August 19, 2008
Well, anyway, this might be the closest thing to the beginning. I found a journal entry of when I was first diagnosed with Ulcerative Colitis. What I write about colitis before I found out the Specific Carbohydrate diet will be negative... because the illness physically and emotionally draining... so of course even I would be cranky. lol
This was also at a time when I didn't really understand what was going on with me, so the information might not be accurate. I was only getting information from what a doctor said or some random nurse said or whatever anyone told me at the time. I've had this illness for almost 5 years!!! I think I'm doing ok now. Yay!
(Originally written 4 years ago - April 12, 2004)Man... I feel so exhausted today. I think I had a nervous breakdown of some sort. I have been very stressed out lately. I am frustrated with everything too. I just really need a job. A real job right now. I feel like I'm trying my hardest too but with no results...
Anyway, I have a lost sense of time. All of the stress has gotten me very sick. I ended up being admitted to the hospital. Once to the emergency room because I've had stomach pains and diarrhea for more than a week. A few days later, I had to stay at the hospital because they found that I have a serious illness called ulcerative colitis. In Lamen's terms, it means that I have cuts in the latter part of my large intestines giving me a "swollen colon". This condition is recurring and I might have to take pills for the rest of my life.
Seriously, I don't ever want to be in a hospital ever again. I hate the smell. And its so lonely. They were feeding me intravenously through an IV. It really was a struggle to wheel that thing to the bathroom [because it was attached to me]. Especially if one has diarrhea.
Things are almost back to normal. I went to work for the first time in almost 3 weeks. Work is still awful. I really don't belong there. I also need insurance... badly. The cost of my hospital stay was more than $50,000. I was so lucky I was cleared with Charity Care to pay for the bill.
I know getting a real job will be a huge weight off my shoulders. I would finally be able to breathe and feel like I can start to live.
Wednesday, August 13, 2008
Hey guys, when I wrote this, I was beginning the diet. It was really hard to resist temptation in the beginning. But being strict really pays off!! Good luck everyone!
(Originally written 3 years ago - Jul 27, 2005)
This time around my family is taking an active part in learning more about my diet. They’ve been helping me cook and when they see me too tired to do anything, they cook for me to make sure I have food. I love life.
Looking at pictures of food that I’m not allowed to have is like getting caught looking at porn. That’s just sad.
Tuesday, August 12, 2008
I decided to open up a blog to go along with my videos. Its a lot easier for me to give updates than to make and edit videos. Don't worry, I'll still make videos hahaha. I actually have footage for 3 more videos... just need to find time to edit them. Eep!
I just got a new job recently that's keeping me super busy...
I'll try my best to give updates! :)
Excerpts from my journal will be posted every Wednesday (which is also comic book day!!). These are entries that I wrote after a flare-up and starting the Specific Carbohydrate diet for a second time. I messed up the first time I tried because I didn't take it seriously. I didn't know it back then, but the second time around was the beginning of my recovery and now I am in remission. I know I make it look easy... because I seem to be smiling a lot... but its not easy. I just try to be optimistic about everything. Colitis made my life difficult. I don't want to make it harder than it already is, so I smile and hope for the best.
Wednesday, August 6, 2008
(originally written 3 years ago - Jul 22, 2005)
Currently, I am in recovery from a very recent flare-up which I believe to be a near-death experience. How strange to have a life-changing landmark at such a young age! Sometimes I find it unfair… but at least my eyes were opened fairly early in my life rather than too late. Or course, never say never. As the old saying goes, “Its never too late”.
Unfortunately there is no cure for Ulcerative Colitis, so I can only hope to stay in remission for the rest of my life and learn how to manage my life around this obstacle.
How do I plan to do this? Well, there are a few things.
1. I’ve been on a diet called The Specific Carbohydrate Diet for quite some time (SCD for short). This diet is supposedly a natural way to stay in remission through intestinal diet. It is not recognized in the medical community. In fact, its frowned upon by most doctors because they only want to treat this through prescription drugs. But some researchers believe in the diet. And it seems to work for most. Besides, the doctors aren’t the ones agonizing over the next bout of explosive diarrhea. I need to really stick to the diet this time. I will go slow and more importantly… TRY NOT TO CHEAT! Its really not worth another flare-up. Though, sometimes flare-ups are just beyond anyone’s control. Sometimes they just happen.
2. Pills. Don’t forget to take medication and take them ON TIME. The last time I kept forgetting, and then started tapering because I felt fine and I didn’t want to be too much medication. That may have contributed to my DOOM.
3. Learn how to relax! I’ve finally come to terms with myself and I finally know the difference between being stubborn and knowing when to quit. Too bad it took this flare up to open my eyes to this! Sheesh.
4. Research. The more you know, the closer you are to an answer.
5. Exercise. Being in good shape is also a way to manage stress. It also leads to a healthy lifestyle and a rawkin body! Yes!
6. See a nutritionist. I don’t really want to. But I’m open to anything out there. If it doesn’t work out, I’ll stick to the diet unless I find something else.
I’ve tried the herbal remedy voodoo… That didn’t seem to work out at all. I wish it worked for me, because at least I would’ve been able to eat what I want and manage the illness through supplements. Woe is me. In this case, it means I won’t be able to eat regular pizza ever again. I’d have to make it all myself unless someone finds a cure. In the mean time, I will use the SCD diet and cook up my own goodies. My parents are looking into getting me an ice cream maker!
I am always looking for new treatments or new findings on Ulcerative Colitis.