I think one of the worst parts of being in school and having a chronic illness is having a 504 plan.
I know. Ridiculous. They are supposed to help. And they do. In times of trouble they really do help. But I have people pressuring me to use them when I’m not sick. They want me to take advantage of something that I really don’t have a reason to take advantage of.
Our first shows for the musical started today and I have been up since 5 am and it is 11pm right now. I got home 45 minutes ago and I have been relaxing for 15min. I have to study for three tests tomorrow and I have a teacher who emailed my mom telling me to stay home.
I am ninety percent positive I failed a test today.
But at the end of the day, I can’t morally feel okay with using my 504. People judge me for using it. I don’t want to have people think that I abuse my powers.
At the end of the day, I have worked so hard to appear normal that people don’t even guess that I have a disease that attacks my body. I don’t want people to think differently of me because I want to improve my grades.
It just doesn’t seem right.
One of the worst misconceptions about IBD is that it is simply a bathroom disease.
Last I checked, my disease doesn’t just exist in the bathroom. It exists all around me.
They say 17 is too young.
As a high schooler with a chronic illness, each day is difficult. Getting out of bed, getting ready, going to school, completing all of the work, excelling, doing activities outside of school.
I take the good days and the bad days because at the end of the day, it’s a good day. Everyday is a good day.
I don’t know when I woke up and realized that.
Of course, we are all allowed to have bad days. I have mine. And that’s okay.
I haven’t done much with my life and I wish I could say that I’ve done what I’ve wanted. I haven’t met my goals yet. But that’s okay, because I’ve done some pretty cool things that weren’t in my original goal list. I have made some of my best friends at a place that I can call home. I have kept these friends. I have been given the title of Honored Hero for just existing… for just fighting.
It takes some guts to have a chronic illness and yeah, 17 may be a little young to have a chronic illness.
But I’ve learned early on that I can do anything. And I’m not going to let my disease stop me.
Anyway, it’s fun to prove people wrong.
17 may be too young for something, but it is not too young to be me. A girl who has a disease, who owns her disease, and for some strange reason, loves herself in spite and despite of that.
While looking through a blog of someone recovering from anorexia (I was bored and interested in her progress. No need to worry about me. I am a healthy girl!) I realized something.
It’s almost that time of year again.
If you don’t know what I’m talking about, I’ll tell you. And if you do, well, I’m still going to tell you.
March 1st, 2011 was the start of my 36 day journey without food. When I tell people this, I scare them. I get all types of questions, mainly because I am so vague. I usually end up having to explain that I was on IV nutrition through a PICC line which is basically a longer lasting IV that was in my arm.
I also almost get the same question, “How did you do it?”
I think as chronic illness fighters, we don’t really know how to answer this question and feel like we are never giving a satisfying answer. I know for me, my answer is I don’t know or I just did. There is no rhyme or reason.
You can easily call me stubborn. It’s part of who I am. I know I’m stubborn. When people tell me I could have given in, I want to laugh. That wasn’t an option for me. Let me guess, you’re like “Of course it was, Annie.” and yes, I guess you are right but at the same time, you’re really not right at all.
Going back, I don’t remember much about those 36 days and for the most part, this makes me happy. I remember my last meal (chicken with cheese and bacon with French fries (and later part of a bagel but that doesn’t count) from the Outback) and I remember my first meal (mac and cheese, I think they were toy story… I ate the whole box). I remember my routine. I’d wake up, take my pills with a popsicle, go downstairs, maybe watch Glee or shower or blog or maybe I’d go do some groceries with my mom. At 10 I was in front of the tv. I would watch Say Yes to the Dress and What Not to Wear while drinking an Enlive (my least favorite thing ever) and eating an Italian Ice to balance the disgusting drink. The rest of the day was admittedly spent watching television, usually the Food Network.
"The Food Network?! Really?" you may ask. Yes really. It was my food fix. This was how I "fed myself," along with convincing myself that my TPN was actually a cheese burger and fries from Kimballs.
Most days were generic. The only day I can remember is notably one of my worst days. It was a Monday. I woke up and I had my period. Period cramps+IBD=torture. While taking my pills I gagged and I was a nervous wreck the entire day. My mom tried to convince me to eat a cracker or something, just to get something in my body. At this point, I was probably taking around 17 pills (maybe more, maybe less) a day and I couldn’t swallow capsules or any pill larger than a small bead. I had just learned how to swallow my 6MP. It was an accomplishment, only to be set back by this gagging experience.
Of all those 36, that was my worst and of course I had other bad days. I just don’t remember them as vividly.
I went to the doctors for the first time after being out of the hospital and the first question he asked me was if I cheated. I don’t know if my doctor was teasing me but it was the stab in the heart.
Because who asks a 14 year old to take over a month off of school to stop eating so she can switch medications? Because who asks a 14 year old girl to put her life on hold because a medication isn’t working?
I have never been one to fail. I knew I wasn’t good at sports at age 14 but I would always try. I try and I try and I try.
Did I ever cheat during my 36 days? No.
In fact, when my doctor told my mom the results of my colonoscopy saying that everything was the same but he guessed I could start eating, I sobbed while my mom went to the grocery store to get me food. Because how do you tell a 14 year old girl that her efforts were a failed attempt? That she tried, but it wasn’t good enough? That maybe it would work but who knows?
As a 17 year old girl today, I am anxious as the month of February and March approach because I know that sad memories come with them. But I know that this 17 year old girl owes her life to that 14 year old girl who risked her education, who drank those stupid Enlives everyday despite how nasty they were, who fought everyday, who never gave up, who always kept a smile on her face.
There will never be a stronger me than March of 2011 me.
And she was only 14.
PSA: Camp Oasis Applications started today!
You can see if you can go here!
The Evolution of Annie
This is me. July of 2010. Maybe August. I was very sick at this point. I was going to the bathroom multiple times a day and I do not know how I was out and eating.
This is me on my 14th birthday. Hours before I was at the doctor’s getting blood drawn and then I went on a torturous car ride filled with pain (that I kept quiet about by digging my finger nails into the palms of my hand)
This is the very end of August. These shorts are a size 14 and they were too big and you can tell that I have a thigh gap here. I just remember having many bruises and feeling very, very weak.
This is me in the hospital on September 9th, 2010. It was my brother’s birthday. I was really insecure about my face (blame Prednisone) so I didn’t want my picture being taken. I think I was on an all liquid diet at this point.
This is a pretty scary picture for me. This is me in December after months of Prednisone not working, it started to work when I started Remicade in October. I blew up like a balloon, hit my highest weight of 118 lbs and I had acne all over my face. I do not like looking at this picture. Let’s note the braces as well.
Here, it is February Break, 2011. I am in Lake Placid. At this point, I look better, but I felt awful. Lake Placid is the last time/place I had my Methotrexate and I remember screaming and crying in the shower of the hotel bathroom. I then entered my 36 days of clear liquid.
This is me post 36 day fast at the Boston Marathon. I have the netting on because I had just had my PICC line removed and my arm felt very weird with out it. It was almost like a safety blanket. This is where my health went up.
I hit this in the summer before freshman year. This is what 6mp did to me. I still had my moon face. And now, my hair was falling out and growing back in. I hated the way I looked. My hair was awful.
A few weeks before freshman year, I cut all of my hair off. This is me at Thanksgiving. Although looking back, I hate this hair cut. It has given me the hair that I have today and I am very thankful for that.
This is me July of 2012 in Florida. I was going through a bullying situation from my aunt. My hair grew out and I really loved the color and the way it looked. I was in remission for about a year at this point.
This is me during April Break. I hope that this is how people remember me. One of the biggest blessings I have received from having a disease is being able to laugh and enjoy life. You’ll see that in my next pictures.
This is from June 2013. I don’t take life too seriously anymore. It’s all about the little moments where you can be silly.
This is August 2013 at Camp Oasis. This is one of my best friends. You could never guess but this is probably one of the happiest I’ve ever been in the picture. I owe so much to her and to Camp Oasis. They both have made me a better person.
This is me when I went to Disney in October. I am still a girl. I love pink and sparkles and glitter and I love being a kid. I am comfortable in my own skin. If you look back to the first few pictures, you would learn that I was not then. But I am now. I can embrace who I am.
This is me in early November for my Confirmation. You can always count on me for a silly face. I was not feeling that great that day, but no matter what, you gotta keep your head up. Enjoy the little moments and love the life you have. I’m not getting a second chance, last I checked.
This is the last picture. This is me in Vegas, doing something that I love. It all comes back to IBD. My life is forever changed. You can see through these pictures. I may not have had the easiest time in recovering, but I am happy where I am right now. And I love the life I’ve been given.
At the inspirational dinner, they told us to hopefully expect a treatment that can cause permanent remission coming in 3-5 years.
I mean, not like that is too important or anything….
I’m already dreading my next colonoscopy.
I don’t even know when it is.
As most of you know (or I think most of you know…) I went to Disney World this past weekend. We went to Epcot on Friday, Blizzard Beach (their water park) on Saturday, and Magic Kingdom on Sunday.
We had multiple issues getting into Epcot on Friday that would be too costly to explain so I will move on to the real dirt.
What on God’s green earth is Disney doing?
Basically, there is no Disability Act, unless you have a wheel chair. If you have a wheel chair, you can go through the exits. (This is an observation. I do not know if this is accurate but we saw plenty of people being taken through the exit if they were in a wheel chair) I am going to assume so that there are not as many people and then can just get to where the ride is and wait their turn.
Go to guest relations. That’s where you will get something. This is what my sister and I got.
As you may or may not be able to see, we each got a “free” fast pass for the five people in our family. We were allowed to use it at any time and for any ride. Since we both have medical issues, we each got one. This ultimately was helpful because the fast pass lines were typically under five minutes long.
The one question I still have is if you can go back and get another one. I highly doubt so because the people at Disney work the entire day, not shifts. I think that even just getting a fast pass for all rides at anytime is the best option for them.
This is clearly not as helpful as it should be because we still wait in lines. Keep in mind, this was not applicable at the water park.
Despite all of this, we had fun and here are two pictures of me in Epcot, one at the end of Test Track (Awesome changes, by the way) and the second one of me in the Mouse Gear Store.
You can tell how much I love pink, right? But it’s actually not my favorite color, that’d be purple, or glitter.
Anyway, Disney was great but I feel that the New Disability Act isn’t even a thing. It just evens the playing field for all visitors, disabled or not.