Inflamed and Untamed

I know you hate that nickname right now but when you get older you’re going to appreciate your parents little names for you.  You know how mom always calls you Squirt or Sarie and dad calls you Saro? Let them, they are just loving you and you’re going to need their love a lot to get through this. Anyway Sara, I’m writing to you from the year 2012 to give you some advice about how you are going to get through all of this. 

Right now as you sit in your hospital bed reading this you’re scared. I know you are because I was you, well I am you.  I am the you that exists in the future and I want to tell you about how great you become and how being sick completely changes your life. You know how you’ve been staying in the hospital every year since you were a baby because of dehydration, severe diarrhea and constant vomiting? Well you have a disease but you’re not going to find out what it is until years later when you’re a teenager. For now they are going to tell you it’s a bunch of other things causing it like what you eat or “nervous stomach”. I’m sorry babygirl, that probably just scared you. The word disease is a scary word, but don’t be scared, just listen to your story…

Wanna know something great? You’re going to get a break soon and from the time you are 9 years old up until the age of 14 you will forget all about being sick! In fact, you’ll hardly remember much about the times you were sick as a kid because it all fades into patchy memories. I would like to give you a lot of advice about your teenage years because frankly Sara they are a mess. What the heck are you thinking then I don’t know, but in the end you turn out to be alright so I’m just going to let you go through all of it because I think it really helps you become who you are. I don’t want to scare you because you’re young but I think you can handle what I am about to tell you.  Most kids who are sick have to grow up a lot faster than other kids anyway so I know you are already strong. When you become a teenager you’re going to start seeing blood in your poop. Yeah, I know that sounds awful and so gross! But listen carefully, tell mom! You’re going to start seeing blood and do things like wish it away, pretend you’re seeing things, and then when you really know that it is indeed blood you’re seeing you never say anything about it at first. Don’t do that!  This is the first sign that something is going wrong and this is the biggest window into your future health issues.  Eventually you do tell  mom and you go to the doctor and they make you do a test where you have to collect your poop into some jars and bring it back to the doctor so they can test it. You will find this to be the worst and most embarrassing thing to ever happen to you and you throw a teenage tantrum and cry and scream at your mom that you’re simply not going to do it.  In the end mom wins and not long after, and a few tests later, you get diagnosed with ulcerative colitis. You are scared to death because having a disease is a big deal. You wonder what it all means, you wonder if you’re going to die, you cry, and then you ignore it. 

So this is what you need to know to navigate your teenage years with a disease. Don’t listen to the doctor when they tell you that you can only eat white rice.  You try that for months to get better and it doesn’t work and you end up getting the nickname “rice girl” from your uncle because that was all they could feed you when you stayed with them for a week.  Learn as much as you can about your disease because you really don’t know enough until you hit your twenties and that knowledge would have came in handy.  In fact, no one in your family takes your disease seriously because you don’t talk about your health and mom thinks it’s just like her IBS and that if you eat something different you’ll be fine.  She doesn’t quit thinking this way until a few days before you have surgery…sorry honey, I should have broken that one to you gently.  I’ll get to that in a second.  The summer before high school you get an opportunity to fly to California with your cousins to visit the Red Wood Forest but you wind up having a bad flare-up a few days before you leave with awful diarrhea and terrible pain and they think you are lying to get out of the trip.  This is your first taste of something you’re going to deal with for the rest of your life. Some people are just never going to understand what you go through so get used to that.  There will be times that pain will stop you in your tracks and knock you to the floor but you don’t know that it’s a part of your disease.  There will be times of diarrhea and pain and blood but you quickly brush it off as nothing because your flare-ups tend to last a week or two or at worst a month or two, but they are not as bad as what you will experience later.  When you go out to eat you usually get terrible tummy aches and have to rush to the bathroom, that is also your disease. If you take any of my advice just please get as much knowledge as you can about your disease and stop ignoring it because you really need to manage this better.  You hardly ever take your medicine and when you do it doesn’t do anything for you.  This is because you’re not on the right meds for you and you should really work that out.  Your teen years are not all that bad though! You start dating a guy in 11th grade that you stay with for 7 years and you are really happy with him.  You are a competitive dancer who ends up assistant teaching by the age of 14 and then teaching your own classes by the time you are 17 which as you know is your dream come true.  You work 2 jobs, you excel in school, you have great friends, and you are in wonderful shape. In fact, you pretty much ignore that you have a disease the entire time.  Cherish this time! You have energy, you can do things, you have it all and soon this will go away so please please take advantage of it. 

Okay kiddo brace yourself. When you get into your twenties you finally know all about your disease and what can potentially happen but you always think “that won’t happen to me, mine isn’t that bad.” Well, it’s not that bad yet! Your last semester of college you start to get the symptoms you’ve become familiar with.  Bloating, pain, and diarrhea return but you are positive that it wont last long because that is how it’s always been. So every night you go to bed you tell yourself that you’re sure it will be gone in the morning. Sadly babycakes this does not happen. Instead of it being better the next day it gets worse, and it gets worse and worse until you’re sure you’re going to die.  You’re going to start going to the bathroom up to 30 times a day and at one point you count going to the bathroom 52 times in a day.  You will experience the worst pain you’ve ever felt, lots of blood loss, high fevers, immobilizing arthritis, weight loss, and so much more and no medication that you take will stop this. If you’re not near a bathroom you could have accidents, and sometimes you do.  They really embarrass you and so you start to isolate yourself. You skip classes and end up failing the semester, you stop hanging out with your friends, and eventually you’re so sick that you have to move back home with mom and dad. Life is bad and you’re all alone in this and everyone is scared for you.   

I know this all sounds bad but it gets worse I’m afraid. You go into the hospital and you’re there for six months! During that time you have two surgeries. Little girl, I’m not going to tell you anymore about this time because I am certain it will scare you but I also want you to experience it without knowing what happens. I will tell you that it will be the most difficult thing you’re ever going to go through in your entire life.  I also want you to know that after this it doesn’t get better, you keep having complications for years after your surgeries and more hospitalizations and you end up finding out that you don’t have ulcerative colitis after all but you have Crohn’s disease.  I could tell you a lot of things that could potentially help you get through this a lot more easily but I don’t want to.  Not because I don’t love you, but because I do.  All of these struggles are going to turn out to be a huge blessing for you and if you don’t go through them you won’t become the person that you are meant to be. 

Now here is where I get to tell you the good news. You matter! You end up making a difference in peoples lives because of all that you’ve gone through.  You have to go through these things to turn into the person you become, the person who is writing you this letter.  You will share your story with thousands of people and become somewhat of a role model to other people living with your disease. You do this not because you want to be a role model or well known, but because you truly care about those people and want to make a difference in their lives. This is what makes you feel like everything was all worth it in the end. It turns out that you end up being a huge advocate for your disease and you have no problem talking all about it to anyone and everyone. Crazy right?  Sara, you are going to have this disease the rest of your life. You will take medications, you will have more hospitalizations, and you will go through so many things for the rest of time. It’s not always going to be easy but I can tell you that you are strong enough to get through all of this. Just as you are a little girl right now being strong in the hospital and being brave while you get your shots and IV’s you will be strong and brave the rest of your life. There will be times where you will think that you can’t make it, that you don’t even want to make it, but do not give up. I am writing you this right now to tell you that you are okay. In fact, you’re better than okay. So tiny dancer, chin up!  I assure you that you are happy and proud to be who you are. This disease is going to knock you down over and over again but what you can’t see is that it’s also going to turn out to be one of the biggest blessings in your life. 

 

Love, 

Yourself. 

P.S. Not all doctors know what they are talking about. 

P.S.S. Dark colored underwear and clothes are your best friends. 

P.S.S.S. You look better with age. ;)