If your health condition (or the health condition of a loved one!) was an animal, what would it be? Is it a real animal or make believe?
I’d like to think that a disease is basically a giant. You know, after the saying, “Never wake a sleeping giant.”
Because that’s what an illness is. It’s this burden that basically is crushing you. And it’s dangerous; life threatening too sometimes. And when the giant sleeps, you know it’s there. It’s presence is way to heavy to not realize it.
But when it awakes, you may as well crawl up in a ball because everyone fears a giant. Giant’s aren’t safe. They harm. They never mean well. And neither does a disease.
Happy St. Patrick’s Day, first off! I hope that you have all enjoyed the day and are doing as well as you could have today.
If you’ve been following me for long enough, you know that I have this very, very strange infatuation with dates.
So, take a guess. Is today important? Well, yeah, it is. But not only is today important, it is IRONIC.
Three years ago today, I came home and was told that my great-great aunt had passed away. She had been battling Colon Cancer for around a month. She died so quickly because she refused to get a colonoscopy when she was supposed to and she also ate very poorly. She had her first colonoscopy and was told it was Colon Cancer.
I visited her once in the hospital and it was weird because I had never been in that hospital before. It was very daunting and weird. Weird weird weird. I remember getting lost in that hospital.
Less than six months later, I was found in that very hospital, getting my very first colonoscopy at 14. I was hospitalized in that hospital. I question those two events and how closely related they are. It always makes me wonder if it was supposed to be like that and that it was supposed to be a signal or something. Of course, we didn’t think anything of it, but I do love the irony of it.
In addition to that, a year later in 2011, on March 17th, I overcame a HUGE issue for me. I swallowed my first full pill. My 6mp. I have always feared swallowing pills and capsules, and you many know that if you’ve been following me since August (when I finally learned how to swallow my capsules). I sucked up my fear and I became brave. And although, swallowing a pill is honestly a piece of cake now, it was a very big deal to me.
This then leads me to a few days from now, the 21st. And I am going to apologize before hand because I know that I may seem a little off or different on the 21st.
So, I’m going to be snowed in again and I realized it’s been months since I last did a video. If you have ANY suggestions, I’d love to hear them!
I have reached this period in my life where I feel stuck. Although I am 16, I feel like I am ready to leave my town and go places. Part of me wonders if college is really the correct option for me because what if I don’t need to go to be successful? I mean, I am going to go to college but part of me just wants to take a gap year and see the world.
But then I am once again stuck. I can not travel the world as much as I’d like to. I would love to step out and let myself go, but I can’t.
Also, I am stuck with my medications. I keep realizing that I am going to have to take this medication for a long time. But I am already tired of a shot. I hate going every other week. Nobody knows that. But I hate going to the doctor for a shot. I put up this guard that says I’m strong enough but in reality, I hate going to get my shot. I hate having to put up this act that says I’m okay with going. And then when I go, they always are talking about how I need to give myself the shot. That I am 16 and that I am old enough to give myself a shot. They tell me I need to start doing it. And hearing this scares me because I just keep hearing my aunt say, “You know you’re going to have to grow up….” in my head. But I’m just stuck because I hate taking this shot. But I need it to survive. And I hate that. I hate that I have to rely on a medication to get by.
I just feel stuck right now. I just want to let myself go, but I can’t. And I hate that.
Write about why you’re awesome
Well, this is it. I made it. I feel like I am one of the few that actually did this everyday the entire month.
Write about unexpected blessings of your health condition? Or how being a patient / caregiver has changed you
Since the beginning of my disease, I have been very accepting to the idea of a disease. I wasn’t before but when I was told that I was sick, it was okay for me. It was an answer to a prayer that I had been praying for two months.
Because of becoming ill, I am such a better person. I have my real friends at school, the ones who actually care about me. I have my friends at Camp Oasis who are honestly my favorite people ever and I hate that I only see them once a year. Without me being sick, I would have never met them. I wouldn’t know the true value of friendship.
In addition to that, I have met other people that don’t go to camp that deal with the same thing as me and it is so comforting to know that I’m not alone. That I’m not the only normal one out there. Because this is MY normal. And they understand it.
I have met my doctor. I have met my acupuncturist. I am going to be meeting with a girl two years younger than me who was diagnosed awhile ago. The people that I would have never met that make my life so much better… like YOU.
I am honestly blessed to be diseased. I wouldn’t want to be any other way. And yes, it does suck sometimes and sometimes I wish I could be different and not be sick. But at the end of the day when I look in the mirror, I am 120% satisfied with the person I’ve become. I am stronger. I am wiser. I am more mature. I am braver. I can fight through anything.
It scares me to think about who I would have become without a disease. Would I be as down to earth? Would I be as brave? Would I be as non-judgemental? Would I be a normal teenager who only cares about her self? What if, what if, what if.
I don’t want to get rid of my disease. I wouldn’t wish it on anyone. I would take it away from you all. But in all honesty, if you were going to take my disease away from me, I’d fight you.
Because me without my disease, is not me.
I actually have a video for this but I know no one will watch it so I am just going to post.
How have your goals as a patient / advocate / person evolved?
I didn’t have time to film so I’m going to post instead… sorry. :(
Write about mental health
Depression is a scary place to be. There is not escaping it. It hits you like a car hits a chipmunk, all at once and with no remorse.
I have never been depressed. I’ve had people think I was depressed because I was not acting “perfect” or the typical me. I’ve changed over time. Two and a half years ago, you could call me pessimistic. Two years ago you could call me optimistic. Now, I am a realist. And to some people, that means depression, which is sad because that is basically downgrading the severity of depression.
I guess I’m going to tell you something extremely personal. So personal, I don’t talk about it at all with anyone other than my mom.
My mom is one of three. She is the oldest and has two brothers following her. The youngest, Pat, has diabetes.
My mom also grew up in a really difficult house. My grandfather was a cop and my grandmother was a nurse who worked night hours. My grandfather and grandmother smoked. And most importantly, my grandfather was an alcoholic. Was, being the strongest key word that I am most thankful for.
My Uncle Pat has always loved music. They come from an Irish background so drinking, smoking, music, and partying are all there. My uncle soon found it hard with his father as an alcoholic, a mother that slept the entire day and was gone every night, having siblings about 8 years older than him, having diabetes, and depression.
Depression likes to tag along with chronic illnesses. It’s like an invisible friend that you don’t know if it’s there or not. And it is not really a friend.
His grandfather lived in an apartment above his parent’s garage. And that is probably the biggest miracle.
I don’t know how old he was when everything hit him hard. My uncle is smart but he focused on music, which is a difficult career to go into. It was him and his trumpet. Everyday forever.
Everything got too hard for him so he decided to act on it.
My uncle went into the garage and put himself in the car and turned the car on. Loud music was playing.
My great-grandfather heard this and went down to the garage, saving my uncle who was steps away from killing himself.
I don’t remember this great-grandfather, but he is a blessing. My uncle is an inspiration to me because he still loves playing music and still deals with diabetes and probably depression.
Mental health is hard to control and when you have a chronic illness, it is easy to get into the mindset that things are difficult and that it seems impossible to get through.
The sayings like “Just be happy” or “Don’t worry be happy,” or “Just look on the bright side of life,” are insults.
Please know that if you are struggling with depression, you are not alone. You have me. You have your friends. You have your family.
And I will not end this with a cliche quote like “it gets better” because honestly, I’m not sure if it does. Maybe it gets better, but it only gets harder.
So, to simplify everything, Depression sucks.
So, I was looking through pictures today and you can really tell where I’ve been from how I look so I decided, why not?
So, it all started about… here.
This is me in late July, my symptoms up and running and I was skinny. I was almost 14 and way too thin. I’ve always been thin, it is in my genes. I’ve always been a light weight and it did not really affect me.
My next accomplishment… sort of…
This is my 14th birthday. I had gone to my pediatrician that morning to get blood drawn to see what was wrong with me. As you can tell, I have a large thigh gap that should not be there.
This is at the end of August. I was too skinny and exhausted. The heat hurt and I was always tired. Nothing fit me at all, I was too thin.
Now on to the fun stuff. :/
This is me at the hospital September 9th, 2010… my brother’s 12th birthday. I am hiding my face because I did not want to be seen. Looking back, I wish I had more pictures so I could see how I’ve changed. You can see my water with ice chips and my PICC line. I was not eating here.
This is me at my favorite time. Prednisone. I have a moon face and I had a LOT of acne between my eyebrows. From that point on, my body had forever been changed. It’s scary to see my body like this.
I *thought* things were getting better. This picture is from February, probably one of the worst times.
I was off of prednisone about one month. I was on methotrexate. I remember this vacation vividly. My mum had to give me a methotrexate shot there and I screamed and cried in the bathroom.
This is from April 2011, at the Boston Marathon. I guess I was still on TPN then (from my 36 days of no food) but I’m almost positive I was eating a little then. I was able to wear my arm proudly and I did not care what other’s thought of me.
I then hit this. My hair. I hated my hair. And I still have a bit of a moon face here. I hated my hair. 6mp does NOT help at ALL. I lost so much and then regained a lot and I honestly thought my hair was ugly.
I decided to take this matter into my own hands… or my hair dressers.
I had my hair cut, it was boy short and I embraced it. Looking back, I’m not in love with the cut but it was what I had to do to fix my hair. Here, it’s Thanksgiving of 2011 in South Carolina. <3
I have been growing my hair out since then.
This is me at Lake George this summer. My hair up and out of my face. My face is not longer my least favorite part about me.
And this is me in Florida this summer. My hair has grown out. The acne between my eyebrows has perished. My face is much much slimmer.
Although I still do have a thigh gap and I still can see my ribs and I am still at a low weight for my age, there are days when I look in the mirror and I realize three things. One, sometimes, I still see my moon face. I see that girl at Christmas 2010 who REFUSED to have her pictures taken but still did. I still see the puffy cheeks. I don’t see the cheekbones. I don’t see the clear skin. Two, I see that I’m too skinny, that my face is hollow or there are dark circles under my eyes or my thighs are way too thin. On other days, I look in the mirror and am thankful that I do not see either that girl from July 2010 or that girl from December 2010. I don’t see a disease. I see myself.
And that’s a beautiful thing to see in the mirror.
