a letter to my younger self

dear self,

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 hardno 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.

love, me

ps – dont forget to smile.

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polar vortex flaring

days like today remind me why i treasure my good days, my great days.64917faabd5fe5a7059db2f1b0f2057a

i had a rough night last night & havent been feeling my greatest lately (scumbag lungs, fissure). im in a flare right now & its definitely affecting the rest of my body. ive been trying my best to do low impact exercises to keep up with my training plan, but even that seems to be too much lately.

i told a friend last night, most days, my positive attitude wins over my IBD, but there are some days you have to let it physically and emotionally defeat you, or youll never win your battle against it. i cried. i cried a lot last night and today. humility brings us back to a level where we know we can try to control our emotions/attitude as best we can, but we come to a point where we have to accept we cannot always control our bodies. and that is hard. i hate calling into work, but i know that i would be unable to physically do any job today. if can manage to get from point A on the couch today to point B being the bathroom, id be lucky. quite a shitty situation when you get the urge.

my fibro has been flaring badly the past week. my hands (thumbs & joints specifically) have been difficult to move lately. id chalk it up to cold weather, but its lasted too long & flaring doesnt help. ive been lucky enough to be blessed with a family doctor that knows me well & responds very quickly to my requests. the route wed had originally tried cost well over $200 with insurance, so we settled on a different med for the past few months, but it hasnt been working. today, he phoned in a topical pain solution and we tried the other drug again. $256 with insurance. tears, again.

im such its the lack of sleep, energy & exercise ive had this week, but im bummed/exhausted/fed up with my body. comically, im always the first one to say “oh, rub some dirt on it. youll be fine !” but to hell with the dirt today, ill cry instead. the dirt will be there tomorrow.

supporting a loved one with chronic illness – guest blog series (Mom)

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. take steps walk 2011

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!

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i love you, mom.

 

 

steroids.appearance.self-esteem.

this may be the longest blog i will ever write, but i believe it is important for all to hear. ive had this post in my editing box for weeks:

when i am in a flare, there are many times a day that i hear comments about my appearance.  99% of my friends know i deal with a “type of condition” that causes me stomach pain and periods of time that i may be sick enough to visit the hospital for several days at a time..

upon my initial discharge from the hospital in 2004, i began what would become an on-again/off-again relationship with an physically & emotionally abusive partner: Prednisone. when i started my first large dose of steroids, i had no idea what i was in for.  all i knew to expect was a little “puffiness” and that i would start to feel better soon. the morning i woke up for my senior pictures, i remember waking up, looking in the mirror and seeing the dramatic affects of what it was that steroids really did. it was absolutely a different face than what i went to sleep with – puffy, squishy, cheeks 3x their normal size.  i remember putting on my 3 changes of clothes that were 6 sizes smaller (due to my hospitalization) than what i usually wore and trying to smile through the disappointment. secretly, i wished they were able to photoshop my cheeks. pictures to Prednisone users are extremely difficult to look at, so i appreciate the good ones (few and far between) when i am not on steroids. every fall, it never fails that our family pictures fall in the middle/end of a wild flare. there probably hasnt been a picture in the past decade i dont look absolutely miserable. (except for this one, where we all look extremely sexy)

what 16 year old girl is perfectly comfortable in her own body? add extreme weight loss & weight gain in small periods of time to the equation, as well as comments from people who feel they are entitled to let you know how they think you look and you have a recipe for terrible self-esteem. at first, all i could really do is laugh, at myself and with the people who laughed at me.. i DID look like a squirrel storing nuts for winter.  i DID look like the kid at camp winning Pudgy Bunny.  i DID look like i had my wisdom teeth pulled out. SO, i did the only thing that i could do, i gave it time. it eventually came to a point when the comments started affecting my self-esteem, and eventually pushed me over the edge when an adult crossed the line and called me “fat”.  thus intensified my struggle with weight.

like most girls, i had terrible self-image in my teenage/young adult years, especially after seeing the physical damage that crohn’s had done to my body within the first few years after diagnosis.  i had hair loss due to being on Imuran (low dose of chemo), a fat face from Prednisone, little to no energy.. i looked how i felt.  most did not notice the small things that i did, like hair loss, due to the fact that i was born with obnoxiously thick hair.  but everyone noticed the puffy face weight gain and everyone felt they were entitled to comment.

let me be frank: im (very) aware of my frequent (and rapid) weight loss/gain, stretch marks, tired, peaked eyes and “unkept” physical appearance. its taken me almost 10 full years to accept some of the things that happen as a result of my disease & the medications i must take for it in order to survive.  self-esteem is not something that cannot be fixed overnight & i will unfortunately have to work on accepting this for the rest of my life.  many people with chronic illness deal with depression & i understand why.  sometimes, the best way to deal with having no control of your health is to throw your hands up in the air and say “what will be, will be!”..  unfortunately, you have to take the good with the bad when it comes to side effects of medications & i know that all too well with Humira, but that lengthy post is saved for a later date.

i struggle [immensely] with having no control of what an autoimmune disease throws at you. having somebody verbally express how awful you look has a tendency to crush how good you were actually feeling that day!! a coworker told me today “i saw you yesterday & had to ask somebody if you were okay, you looked pretty awful”.  heres the kicker, i felt the best yesterday i had in weeks!! have i learned to tolerate more? absolutely, but im not a miracle worker! makeup does not cover some of the side effects i have no control of.. its ugly. some days i am not able conceal the amount of pain i am in. it shows: in my puffy eyes, the way i walk slowly holding my left side, how i carry myself (attitude) and as much as it kills me.. emotionally. there are times i feel like a prisoner in my own body.

living with one of the most embarrassing diseases on earth has not only taught me humility, but has made my skin pretty thick. (thank God!) on any given day, i hear many comments on my appearance. lately, they are definitely not compliments. there is a limit for how many times in a day that you can tolerate “you look awful” before excusing yourself to the staff bathroom and crying.  when you tell me i look sick, it hurts. i am sick.  i know that 90% of the time, comments like this are made to me because people want to acknowledge the fact that i am sick but dont know what to say.  i am very open about my situation, but when i am spilling my guts and being completely open & honest, i would appreciate some consideration. i appreciate that people want me to know they are concerned & may not necessarily know what to say but i prefer for some things to remain unsaid. that being said, it’s not always easy to talk about everything, despite how open i am.

there isn’t a “wrong” way to express to someone that you want to acknowledge they are sick, but there are ways to be more sensitive to the more obvious signs that someone with a chronic illness may be showing. usually, if the conversation comes up, im willing to talk about my disease and things that may be going on – not everyone is an open book with their illness, especially if it is something as embarassing as Crohn’s. if i bring it up, it means i feel comfortable enough talking to you about my disease and thats a big deal.

10 things to avoid saying to crohns/colitis patients:

1) “you look awful.” often substituted with “you look tired”.

2) “you look exhausted.”

3) “doesn’t that stress you out?” not any more than your 20 questions asking me about how stressed i am.

4) “i know how you feel.” i understand empathy, but unless youve experienced having Crohn’s or Colitis, dont ever say it. having Irritable Bowel Syndrome is not Inflammatory Bowel Disease! i once had someone at work tell me she knew she had Crohn’s Disease but just never had the time to go to the Dr. to get it diagnosed..  is nothing like having the flu. its nothing like period cramps. my guts are not the same as your guts & my guts might not be the same as someone else with IBD. we can empathize, but its belittling to lessen someones symptoms or feelings.

5) “i’m so sorry!” – for me, this is an awkward one. somehow i always end up apologizing for something that i cant help, reassuring them i’ll be okay. i never know how to respond to this, despite the number of times ive heard it.  im sorry too?

6) “i wish i had the stomach flu or something like that so i could lose some weight quickly”; no “joke” like this is funny to someone who uses the restroom upwards of 12x a day. its a very insensitive way of letting someone know you think their illness is a joke to you.

7) “youre losing too much weight.” usually women love to hear someones noticed theyve lost weight, but when you realize the negative tone to this one, its not very fun.  usually, this comment is followed by “and your eyes just look tired”.

8) “you’ve gained weight” – NO EXPLANATION NEEDED HERE.

9) “you’re going to eat that?” or “can you eat that??” if there is an appropriate way of finding out if someone is able to tolerate certain foods, simply ask ” “___, will your stomach tolerate [dish]. please dont do it in front of a crowd of people.  not everyone with IBD “comes out of the bathroom” to everyone they socialize or work with. some people unfortunately feel they have to hide it. insensitive comments feed that fire. one of the really unfortunate things for me is my gut does not appreciate the nutritional value of the GOOD things in life – lettuce, red meats, peanuts, fresh fruit, milk. my stomach prefers junk. some days, i will eat a burger!! some days it might only allow it!

10) “come on, its one drink” or “come on, its one bite” – we know our bodies best and what we are able to tolerate.  this may change daily or weekly!

it is an awful, uncontrollable disease. but considering all, ive got it good! there is no reason i shouldnt smile while fighting this disease.  i have an absolutely wonderful support system. i realize that no one is going to say just the right thing to me when i look ill, so i try to have patience when i do hear these things. im so fortunate to have found discussion boards & support groups in my area that deal with many of the same things i do. its a sucky situation to be in, but helps to be in it with other people who can empathize knowing exactly what battle you face every day.  i do the best i can to encourage people who ask questions to research & read up on it.  unfortunately, many of the people i explain my illness to also know people who face the same fight but may not know it; they may not have the support or encouragement to talk openly about it.  i know that i face many challenges ahead of me, so i do what i can to advocate for myself and others with the disease and do my best to explain some of the unique situations im faced with.  i would never want to offend anyone going through something i wouldnt know the first thing about. i do smile & i do laugh at my situation (most of the time its after the fact) but do my best to learn from every experience.