Disability Awareness 2013

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nosedivve's avatar
First of all, the lovely Nichrysalis is doing this amazing project:  Disability Awareness 2013 The Glossary ProjectThe Reality
A disability is understood as a physical, mental, or developmental condition that limits a person's movements, senses, or activities. A disability is more than an impairment or physical restriction though nowadays; the definition of disability has broadened to include mental and emotional states in recent years. July 14th is a day dedicated to bringing awareness to disabilities of all kinds. The day was started by a UK non-profit.
As I have said in a previous journal for Purple Day, I am very passionate about creating bridges of understanding. If you were to meet me it wouldn't be outwardly obvious that I am considered a person with disabilities, but I have photosensitive epilepsy, ADD, OCD, ODD, and HFA (or Asperger's), to name but a few of my conditions. I'm not alone. Worldwide,

DAD Ribbon by NichrysalisToday is July 14, 2013, which is a day dedicated to bring awareness to all kinds of disabilities. 

Disability: a mental or physical impairment that hinders a person from daily activities and/or limits a person's movements, senses, or activities.

I am going to discuss a disability I personally know very much of: Inflammatory Bowel Disease.

There are two common types of IBD: Crohn's and Ulcerative Colitis. Both are not curable, but medication and/or surgeries can put the disease in remission. 

Crohn's                                       vs                         Ulcerative Colitis
can occur                                                                                               the colon is usually
anywhere in the                                                                                      only affected.
digestive tract.

common:                                                                                                         common:
pain in lower                                                                                                   pain in lower
right abdomen.                                                                                               left abdomen.

bleeding from                                                                                                 bleeding from the
the rectum                                                                                                     rectum is common.
isn't as common.

                                                            & more

There is one myth I would love to debunk right now: "Irritable Bowel Syndrome is the same thing as Inflammatory Bowel Disease!" That is completely, and utterly incorrect. IBS is a functional disorder, whereas IBD is a damaging disease. 

Oh, and here's another one: "But you don't look sick! Anorexic maybe but not sick! You're lying." Oh, how I hate this one. There were rumors about me that I was anorexic in middle school because I was only 80-90 pounds, whilst being 5'2". I had significant weight loss that I couldn't help, and I didn't tell anyone what was wrong (which made matters worse because they kept saying I was home cutting myself and not eating. it was harsh) with me to avoid the attention, but it still found me. The few I told were surprised because I didn't look sick at all. IBD is an invisible disease.

I was diagnosed with Crohn's when I just turned 13. I remember wondering how it was possible, because I was so young, but I was relived to get help because I was suffering for half of a year and my parents didn't believe me. I was unable to finish the last half-month of school that year, but my parents pulled some strings so I could pass (I missed 40 days of school that year) and enter 8th grade the following school year instead of repeating 7th grade. 

Since my first diagnosis, I've had four flare-ups. They are generally 3-4 months long. When it starts off it's only simple things such as stomach pain throughout the day and loss of appetite, but as it progresses the symptoms become worse; bloody stools (tmi, tmi, tmi, haha), severe stomach pain, almost complete loss of appetite, significant weight loss, dehydration, 20+ bathroom trips each day, ect. One time I let it get so bad that I could hardly move. I know better now. 

All of the hospital visits were significant to me in some way. I remember in middle school I was silly to believe that I'd go through some kind of metamorphosis whenever I will be discharged, haha! Anywho, the first time was shocking because I didn't expect to be diagnosed with that and I thought it was, oh, so disgusting at the time and that, "but this is an old people's disease!" Don't worry, I'm ashamed of my past-self, too. The second time was the one where I let it get so bad - I was dehydrated due to not drinking anything (it hurt my stomach to drink water) the day before I was admitted. I refused to drink something in order to have a colonoscopy  because it hurt me, so the nurses held me down while they put a tube down my nose. I threw up with it in and needless to say, I was very unhappy with it. The third one I had the stomach flu right after I was admitted. The fourth one they had to put something on my chest and hooked me up to a machine because my heart-beat was going way too fast and it hurt when they took it off. The fifth time I had some really strange dreams and it was the shortest hospital trip (three days).

I fear for the next time I have a flare up though, because my doctor said that the next time it happens I'll start Remicade which are transfusions, and that scares me a bit. One other thing that kind of scares me is the high risks for other diseases - especially depression. There are studies going on about IBD & depression - which causes which and so on. 

It took me a long time to accept that I have Crohn's and understand the disease. Thankfully, now I know the disease better and I don't let it get the best of me anymore. If anyone has any questions about the disease or IBD in general, I'll be happy to answer them. 

© 2013 - 2024 nosedivve
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the-solimnludic's avatar
Wow. To be honest I am pretty ignorant and have never heard of things like this...thank you for heightening my awareness.

I would've never thought that you've been through all that...I really just can't believe it. I mean, I do, because I know you wouldn't lie about such a thing, but it's hard to take in. You're such a strong person, you know that? I think that you'll have a handle on this if it flares up again.

I feel so lucky that I'm in pretty good health. I honestly hope you only get better, but even then that might be asking for too much. Maybe at the very least there will be medical advancements in the future. I wish you good years of wellness to come, and that people will be by your side when you need them!!