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.

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.

 

 

what i want you to know about my IBD

there are many things you may know after hearing many commercials about IBD. while some of these symptoms are very valid for many people with crohns or colitis, there are a few things you need to know that pharmaceutical companies are not telling you.

1) its NOT all about pooping. contrary to what most pharmaceutical companies show on TV, pooping isnt the only thing we have to worry about, unfortunately. to get a bit personal with you for a minute, 60% of the time, i dont deal with diarrhea, i deal with painful muscle spasms, cramping & constipation. i dont mean a tummy ache that with over the counter stool softener, it will go away. i mean pain so bad it wakes you up out of a dead sleep & makes you want to pull out all of your teeth, pain.

2) the ‘in’visible pain. this pain is so difficult to explain. from “simple” pain from eye inflammation & mouth ulcers that may be evident to you since youre able to see it, the stomach pain, nausea and joint pain you cannot see inside of me is indescribable. dont be impatient with me if you find me walking behind you several feet – im likely in the middle of a spasm and youd never know or just left the bathroom after puking my guts out. there are nights when the pain is so bad, i am literally not able to keep it inside, but to exhale and scream would literally push me over the edge and pass out. most flares, i wish i could pass out from the pain instead. living with an autoimmune disease usually involves several organs. for me, my eyes, mouth, stomach, skin, lungs, muscle & bone and nervous system is affected. just because youre not able to see the pain, please dont minimize it. and please dont compare it to the flu. unless youve had the flu for 365 days of the past year. then we can chat.

3) i dont like cancelling plans. so please dont hold it against me when i tell you that i wont be able to make it to a social event. there is nothing i would enjoy more than feeling like a normal human being rather than being a zombie. ive unfortunately lost friends to this , who just dont understand & i get that. im not sure that i would want to hang around someone that cancels plans on me all the time either, but i would hope i would try to understand. leading me to #4

4) because of my disease, i have [social anxiety]. sometimes, it can be about the smallest things, like dinner or a planned event with a friend. before my diagnosis, just before a stressful event, i would have the worst flares of what we thought was IBS at the time.  i missed graduations, family functions, friends parties. over the years, its hard not to get anxious about possibly missing an event due to crohns or colitis, due to stress. if its a real rager of a social function, like a family wedding, my flares are also as a result, going to be ragers. i dont mean the fun kind of rager, like we used to have in college. i mean stuck in the fetal position & hope you live to tell the tale-type of rager. i think youd have anxiety if you feared shitting your pants in public.

5) your comments do hurt. for a little while, if i let them. your weight comments? theyre funny to you. i may laugh, but its not funny. calling me fat? good for you. calling me skinny? whatever. make fun of my cheeks? hey, im living. i have crohns, not cooties. im not contagious. making a joke or light of a serious situation may be your way of showing me youre uncomfortable with a situation – i dont expect you to be sympathetic or understand 100% of my situations, but please be respectful.  underneath the layers of steroid use, pale skin and sore muscles is someone who has been through a hell of a lot more than youd think “for my age”. id love to say that we live in a society where no one cares about your appearance and only cares about how you serve others and whats on the inside. unfortunately, thats not the case & likely never will be. this disease has caused me to be super reflective in a way im not proud of. if the only way youre able to support me is through silence or absense, please do this for me.

6) im proud of who i am. im not sorry if you find my facebook, instagram or twitter posts annoying. not only are they my form of therapy to vent into cyberspace, it allows me to connect with others in the same situation as me. i used to struggle with getting out of bed in the morning. & that was when i was 20! ..at the prime age you should be enjoying college & forming life-long relationships. immature & inexperienced, i thought my life was over when id wake up & see prednisone cheeks – until i learned that waking up morning after morning was a blessing!! i embraced who i was, became comfortable with time in telling people about my IBD after becoming educated about it myself. i lived in denial the first few years post-diagnosis and thats no ones fault but my own. not saying you can learn to deal overnight, but living with disease is MUCH easier than living in denial with disease. im thankful for my fellow IBD blogger, Mel, who taught me the phrase “coming out of the bathroom”. its true.  i spent too many years living in denial that robbed me of a few good youthful years (sick or not). i felt bad for myself, became depressed and hid in my apartment in fear society would eat me alive. i settled for relationships that were emotionally & physically bad for me. im not sorry that i came around & finally found the positives and now embrace the person i am. im a person first, who has a condition. if you find my posts annoying, ill most likely find you unaware. it seems the people who most often roll their eyes are the ones who know the least. as a patient who will likely live with these diseases the rest of my life, its my responsibility to help educate our community to help accept us, so we learn to accept ourselves. i wont apologize for being comfortable in my own skin, using my backbone & advocating for a cause i truly believe in. it took me a long time to feel this way.