the following is a collaborative piece that would simply not exist without the knowledge you have all given to me. i dedicate these words to all of the generous souls who have let me inside of their personal worlds. on the good days.. and on the worst days of their lives. this is my love letter to all of the people who have made an impact on my personal journey.
you just turned 16. life is exciting. you have the world at your fingertips. you learn how to drive this year! there are so many things id like to tell you, answers that would have been useful & encouragement that you needed at certain periods of your life. have a seat & lets go through a few things:
dont go for the slidetackle. having your knee completely reconstructed the summer you turn 16 isnt ideal. having an unsupportive wobbly knee for the rest of your life isnt, either. this game will prove to be, essentially the last game you really ever play. though the rehab sucks, you get to work out with mr suda every day after school. listen. his advice proves to be meaningful during the next few years of your life.
have hope. you will have a brush with death in may of 2004. 3 days after your 17th birthday, on july 13th, 2004, you will be diagnosed with Crohn’s Disease. you will have more questions than answers. summer is a blur & is spent with family trying to put the pieces together of a heavy diagnosis. much of the next few months you spend in the bathroom or on a couch dependent on other people. you will learn how much your brothers care for you. (when you get home from the hospital, dont try to carry a gallon of milk up the stairs, you fall.) that disgusting hospital spray? leave it there.
the next year is full of steroids, different concoctions of many pills & your best attempt at senior memories. then comes college; i wont give it all away.. some of that is pretty fun to find out on your own. some of it is not fun.
hug tighter. the day before you move to college, a friend passes away. you will regret how you acted the last time you saw him.
life at 21 will be hard. trying to live as a functional college student just beginning to learn how your body attacks itself is hard. no one will understand it, including you. despite hours full of IV Remicade each month, you’ll go in for a routine GI check up & walk into your first surgery an hour later. that one doesnt end fun. you’ll sit on a donut for part of the semester. it will become a funny conversation piece. (youll still have issues for a loooong time). youll get a second diagnosis of IBD, this time Ulcerative Colitis. that hopeful self-injection they want you to take? no one tells you that youll need it the rest of your life. instead of sulking and seeking other ways to ignore the pain, accept it. life becomes SO much easier when you accept it. you wont be (as) bitter & your focus in life becomes crystal clear. you will be an advocate for yourself & share your story in front of Miller Park. ps – its windy that day, leave the cards at home.
you will gain relationships with lifelong friends & you will gain new family (sisters, a niece and a nephew – that part is not finished yet). loved ones will perish because sometimes, those who love us the most, stay for the shortest time here on earth. you will lose yourself in relationships, but somehow pick yourself back up. you will learn who your friends are & lose unsupportive links in the process. your faith in God will be tested & many times, all you will be able to do is cry. keep praying – things get better. college is full of ups and down (you fail stats class), but you graduate. & even make the Dean’s list! milwaukee turns out to be the best decision youll ever make, ill let you see why.
at 23, you will be tested & make a choice that will impact many lives. you will relive it many, many times. in the end, you will win.
youll fall in and out of like in many different places, sometimes the same place twice. some of those that are let go prove to be blessings in disguise. in time, the wounds heal. trust me, things definitely work out ♥
life with an illness isnt easy and there are are many obstacles you will face. your first job, your first apartment.. you will work your ass off. youll be faced with a decision to make, which will likely be the hardest one you have had to make that will lead you to today.
if there is one piece of advice i could give to you it would be this: do it all over again. dont do anything different. its taken 26 years for me to love you this much. blessed is the life you live. you have hope, you have been given support and you have decided to do something bigger with your life.
ps – dont forget to smile.
by now, its safe to safe that my parents have a pretty good understanding of my struggles living with chronic illness. ive struggled for a long time being the only one in my immediate family that has the type of disease i have. no one is perfect & it would be unfair to expect them to understand every single level of what it is to live with a disease with no cure. understandably, there is a certain aspect of chronic illness that parents must face. its not just patients who deal with physical and emotional struggle. no parent wants to watch their child go through such a physically and emotionally demanding journey. countless times ive heard my parents say “if i could trade places with you and take away all of your pain, i would in a heartbeat.”
at diagnosis, they witness physical struggle of their child’s body attacking itself. some feel guilt, as they are unable to control anything watching their children lie in a hospital wasting away. during treatment, they see their children being sedated, poked, biopsied, screaming in pain. watching helplessly, it is no wonder many parents of chronic illness patients deal with anxiety, depression and isolation. there are times when i am unable to verbally tell my parents im struggling with something, and in turn, it comes as anger or fear. sometimes it takes an angry outburst for me to even realized im stressed out about something. luckily, my parents do a great job of realizing this anger is unintentional and have been very forgiving to some of my anger.
in any given period of my life, there has been 2 people by my side, giving my unconditional love, support & encouragement through some of the most challenging moments in my life. if there are any two parents who deserve a gold medal for being the most deserving of the “patience” award, it would be my mom and dad. now that im back home, im less hesitant letting them know what i need help with. one week, it may be giving me a hand changing my sheets because it would take me an hour knowing how much my joints and muscles hurt. as a parent, i can imagine its a good feeling knowing that youre still needed even when your children are grown, and over the past year, ive really tried to let them know what kind of support i need instead of leaving them in the dark knowing im not feeling well. its still hard. i think it always will be.
ive asked my mom to give a perspective of my journey and some of the things we’ve gone through as a family. this is the beginning of my guest blog series, from the eyes of a parent:
“Kelly has been “special” since the day she was born. She was two weeks late and had to be induced. She didn’t wanna face the world I guess. After only an hour of labor, she came in kickin and screamin; our beautiful baby girl. To be honest, she was a “she devil” from day one. She was collicky baby. The youngest in our family, with two older brothers, close together in age. She was always sick. Always. She was hospitalized for virus when she was barely three months old. She had casts on her legs, she had asthma, didn’t sleep thru the night(still doesn’t), didn’t require require much sleep, trashed and wrecked and ruined everything. This is not an exaggeration! She was destructive, she bit other people and we even caught her sneaking out back door as a toddler in middle of the night. She was always singing and talking. She was smart and vocal. She was a bossy and sassy little girl. (wonder where she got that from).
Looking back, I think we should’ve known something wasn’t right with her, but couldn’t pin point it. I remember her getting lots of belly aches, not uncommon in our family, as irritable bowel syndrome runs in both sides of my family. She missed functions, the graduation of eighth grade of her brother, family functions, & parties. But not till junior in high school did we realize this was something more. She went on cruise with family friends, and was sick the entire time. She was sick before she left as well, but we thought just a bug. By the time she got home, she couldn’t keep anything down. We tried everything. We went to doctor and emergency rooms so many times. Test after test after test. We heard “she is depressed” or “it’s all in her head”, or “its just stress”. Listening to your daughter screaming at the top of her lungs as the ER doctor gave her her first ever cervical exam, we knew something was wrong. We couldn’t touch her without sending her screaming. If you so much as tapped her, it sent her thru the roof in pain, everything was so painful. After going through one surgery at hospital for an ovarian cyst, the most wonderful Doctor in world came out to talk to Jim and I. This is same Doctor who literally carried her to wheel chair in his office and wheeled her himself down to hospital. He said what we were afraid and knew already; the pain and all other symptoms were not at all related to the cyst. Her bowels exploded in the operating room. He knew then to call in our life saver, Dr. Ravi Kondeveeti. He was GI specialist who really, saved her life. He told us he thought he knew right away what was wrong with her. After two weeks, in Intensive Care, after many, many tests and medications, we took her home. She fainted in first half hour she was home). I know she doesn’t remember most of this, as she was so very, very sick.
Since then, she has had surgeries, injections, IVs and medications that have many, many bad side effects. They don’t work, or if they do, they last for only a while. As parents, it is very frustrating and breaks our hearts to know this is something she will live with forever. I wonder if I passed this on to her? No one has Crohn’s or colitis in our blood family, but our sister in law, has it. The only exposure we knew. She had it bad, had surgery for colostomy even. She is a terrific role model for Kelly and doesn’t let anything get in her way.
Is chronic disease expensive? Hell, yeah! Needing to come up with family deductible January 1st every year! All the Dr visits, hospital stays, medications, broke the bank.. Now that Kelly is on her own, it makes me angry and sad to know, she will have tremendous medical bills, and we can only help so much. We are lucky to have such good family support. Her brothers have always been protective of her, it was actually touching how so when she was hospitalized.
Many people don’t know about these diseases. People say stupid things sometimes. I will never forget a friend of ours saw her steroid face and told her she’d gained quite a bit of weight, making fun of the way her face looked. Most people in the family and her friends, do know about the illness and are understanding. Her sense of humor and potty and poop mouth, are hysterical. Her humor has had a way to get us through tough times hasn’t it?
I hope and pray someday there is cure found. Realistically, there are things she may not be able to do with this disease. Kelly may not have kids. She is terrified of passing this gene on. She may never get married. It takes someone really special to handle this disease. She may never own a home, did you ever see her bill folder?
But……. she does have an incredible sense of humor, a willingness to educate others on Crohn’s and Colitis, a strong will, an attitude that is so inspiring, a smile that melts your heart, a never ever give up attitude – tomorrow will be a better day attitude! She is always researching and educating herself and others. This may knock her down at times, but will never knock her out!
Love you Prinnie!
“as your faith is strengthened, you will find that there is no longer the need to have a sense of control, that things will flow as they will, and that you will flow with them, to your great delight and benefit” – emmanuel teney
one of the first things you have to learn about living with a disease is learning to accept that you have no control of what happens to us in some situations, but we have full control over our attitude and how we decide to react. though i may be in the middle of an unpredictable disease, by taking responsibility and doing all i can to control the rest of my body and what i do with it, i am taking control. running and training is my way of controlling what i can, even when im literally running from a treadmill to a bathroom..
i feel pretty in limbo this week. after having so much anxiety to see which direction my new treatment will take me, ive developed Google-itis & have done entirely too much research on the 2 drugs that will hopefully get me where i need to be. everything ive google so far has been negative & unfortunately, there are a lot of patients that put their horror stories online for the world to read. even more unfortunate, there is a correlation when drugs start to work.. there is a tendency for patients to stop using online support groups once their drugs start working. most of the time, they dont go back to the online forums and tell them their success, since they no longer need the support or validation of others.
so i guess the theme of the week is going with the flow, something i really continue to learn with this disease. many years since living with this disease, my time of the day i seem to really struggle with is morning shortly after waking up. when you wake up, so does your immune system – much like my brain, my stomach does not like mornings either! lately though, ive been having increased pain & symptoms that have been extremely disruptive to my sleep. learning to go with the flow on little sleep has been difficult. i honestly cannot wait to see my gastro.. (who says that?!)
in the meantime, a lot of deep breaths will be taken and prayers will be said.