tonsillectomies, adenoidectomies & suppositories! hooray!

first & foremost, drugs.   i wanted to give an update, considering all of the thoughtful emails, voicemails & texts im having a hard time reading. my nightly IBD meds make it hard to focus anyway, but when you add … Continue reading

why i smile.

what was the first thing you noticed about this picture?

what did you notice first?

what did you notice first?

1 week worth of meds? 1 years worth of medical records & insurance claims?

this photo captures the meds i take on a weekly basis. i should clarify not all of these are medications for crohns disease, but surely 75% of them are to counteract the side-effects of the medications that keep me alive. that keep me living. that keep me smiling.

there are many risks to the medications we take & ive experienced some very scary ones, some that have left damage & others that have made other drugs unsuitable for me to inject now.. but a life of Remission is worth the risk & that is something i will always believe until we celebrate a cure or a vaccine that could potentially prevent IBD or eliminate carrier risk.

at 17, entering college, i took upwards of 35 pills a day (12 just being pentasa). after months of taking so many pills a day, the sensation of putting any pill in my mouth made me puke almost every time. there were days i simply couldnt hold down the pills because it was just too much.

time is a blur, but within the next year i would return home every 4-6 weeks & receive #remicade infusions. my mom accompanied me to nearly every single one. soon the #infusion center felt like home & i would return on my own. & soon, i made my parents stop driving 8 hours on the weekends i needed infusions and asked if i was able to receive them in the hospital across the street from my dorm room. lucky for me, i did not have class on fridays, so i could wake up in my sweatpants, put on my jacket & walk across the street – on good days, i would study & the bad, i would try desperately to sleep despite the awful sounds i would hear, as i was across from the ER. years have come & gone, infusions turned into injections, then eventually back into infusions.

this photo captures many things, but the thing i want you to see is a smile. its a pretty simple thing to a lot of people – a smile in a picture. but pairing it with a representation of only a weeks worth of meds being chronically ill for over 10 years? to a person that gets it, they know how hard smiles can be to come by.

the 16 year old girl inside of me is roaring with jealously; the 17 yr old girl who had a terribly swollen face in her senior pictures is screaming. the 18 yr old girl with little self-esteem entering a new relationship wants to strange me. and still to this day, living as a 27 year old single woman with Inflammatory Bowel Disease, life is still a strange & terrifying thing to me. its still full of pill boxes, infusions, injections, hydration powders, nutrition supplements, sharps containers & pillboxes with timers built in…

but NOW, there is a smile. it might have taken 10,000 frowns & 10,000 other smile to get here, but im happy now. 10 years have passed – way more than 10 colonoscopies too. but in my journey, ive met amazing people whom i cannot put a numerical value on, only sentimental. ive met new friends that have had eerily similar diagnoses, received hand-written letters from across the globe & even ran a 1/2 marathon with Team Challenge Wisconsin and along the way, passed by & met/ran with members of teams all around the US who i still keep in contact with.

i have met new people, found peace with my #diagnosis & have even managed to change some lives along the way – even if only for a day. some people in the #IBDcommunity dont agree with the sense of humor i have & to them i say, thats okay! i advocate in different ways than others but doesnt make me any less credible & shouldnt make me any less happy.. and certainly shouldnt make me hold back on going after my dreams. im this way because i want to be & 10 years ago, i would have never had the emotional strength to go through scopes, hospitalizations, #infusions, injections & surgeries that required me to be in the most humiliating “jackknife” position. humor has always been my coping mechanism & if that means making fun of myself without the risk of hurting someone, i will.

im thankful to have been blessed with this curse. i know this life is not what my parents had intended for me, and certainly not what i envisioned it to be. but the truth is, i am beautiful because of it. all of the bad shit my disease has given me, its given me SO much more than i have ever deserved.

despite living with #IBD, i smile.

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#IBDselfie #IBDawarenessweek #inflammatoryboweldisease #crohnsandcolitisawareness #chronicillness #CCFA #crohnsdisease #ulcerativecolitis #crohns #colitis #autoimmunedisease #autoimmune #IBDfamily #CCFA #teamchallenge #myIBD #1in200 #iamjustone #purpleproject

“happy” anniversary? 10 years of IBD

10 years ago today, 3 days after i turned 17, i was diagnosed with Crohn’s.

  • 120 months
  • 521.7 weeks
  • 3652 days
  • 87,648.4 hours

but who’s counting…?

i was diagnosed almost 2 months to the day after my initial ICU hospitalization that lasted nearly 3 weeks, most of which i dont recall, and the rest of which i would very much like to forget.

i was officially diagnosed nearly 2 months after my 1st inpatient from the GI that initially saved my life. at my time of admission, while other ER physicians & doctors told me i “only had anxiety issues” or the symptoms were “in my head”.. a young GI named Raavi walked our families life & finally gave us answers. im not sure which colonoscopy it was, the 2nd, 3rd or 4th that i have a mental picture of my dad & Dr. Kondaveeti behind the glass in a room just before or after one of my scopes. they looked happy, which makes me think it was a colonoscopy later in my diagnosis.

i was 16 years old living exactly how a 16 year old should.. i had just gotten my license in the winter after having to hold off taking taking drivers ed & pass my test because of my knee surgery. i had just come back from a cruise to mexico. and the best yet, i was celebrating my prom. the day of prom was emotional for me. i didnt feel well & actually ended up going alone last minute, with the exception of receiving a beautiful corsage from my brother, who attended the dance with a friend of mine. having him there was probably the only memory worth remembering anyway. i remember sitting at the table at dinner unable to eat & stumbling to the bathroom to puke my guts out. no one knew how sick i was; i had no idea i was literally dying on the inside.

prom was the last thing i remember before the memory of semi-crawling on the floor of the bathroom to hallway & living room trying my best to get a breath of air out to shout to mom or dad. it was at that moment my life changed. what we would learn after days of uncertainty, would turn out to be acute pancreatitis & should have very well died from it.

i have mental pictures & very short memories my initial stay – some of friends & family visiting after they knew i would make it.. others i still flash back to at the most random of times – in a daydream, in a nightmare, a hospital visit but especially in the process of getting sedated.

the amount of sedatives & drugs they gave me to forget my visit there were worth it. i would never want to relive that stay & secretly knowing the uncertainty my family feared that i would walk out of that hospital, alive, makes my crumble inside. friends & family came to visit and many people came to show their love and support, having no idea how sick i was. i wont forget the expression on their faces when they had first seen me. little did i know that this was the beginning of my future in hearing comments about my appearance. i was a frail 87 pounds & pretty lifeless. i had now lived with an “invisible illness” but at the time, it was pretty visible.

the only time i remember being scared was in & out of consciousness receiving sedation in the middle of a doorway an ICU room being sent out for surgery; mom was standing next to dad looking over me telling me she loved me. she looked scared. i had never seen her scared before.

one of the moments that hurt the most was having to miss my brothers graduation. i begged to go; in a wheelchair, connected to my picc line, with the supervision and only for an hour. i was denied. through some diving miracle, a nurse came to tell us that the local college channel would be airing the ceremony from our high school. i was angry & i felt that not being there made me an unsupportive sister, and less of one. worst of all, mom stayed back with me and didnt go to rileys ceremony, so i felt like i was stealing thunder. so, mom hopped in bed with me, and comically enough, with no sound, we watched riley walk across the stage on a small tv in my room in ICU.

there were some positive memories from that visit; i will never forget adam bringing chris farley movies to watch with me. i think riley might have been there too. i had so many IVs hooked up i had to go to the bathroom every 15 minutes…. & it took a 1/2 hour to get up and make it the few steps to the bathroom with the help of nursing staff. we still joke because it literally took us one day to watch tommy boy.. or was it black sheep? either way, thanks adam.

i was a sick little girl with no idea how much my life would change over the next few years & now, 10 years later, reflecting on my diagnosis is difficult; its emotional & i know there are far too many people’s diagnosis that are mirror images of mine. who ever expects to get to sick so quickly? when youre 16, youre selfish, youre enjoying the things you want to enjoy, finding new friends & hobbies.. a place to fit in. if i could see 10 years in the future, at age 16, im not sure i could tell you the dreams i had for myself, if any.

my diagnosis story is eerily similar to many of the friends ive talked to, but most of them remembered their stay and/or woke up with a bag.  im honestly not sure how i avoided surgery that day, because in my medical charts, 85% of my intestines were ulcerated & inflamed. upon my initial admission to ICU, in one of the surgeries they had done, they discovered my intestines were too swollen to put a camera in there to see how many problems they had to deal with – they had no idea where to start.

living with crohns has given me opportunity to exceed many expectations, as a daughter, sister, niece, granddaughter, student, classmate, coworker, friend & for myself & as a patient. i lived my first 16 years without chronic illness, but i lived them with little meaning.

if i hadnt been diagnosed with IBD,

i wouldnt have met two of my current best friends:

i never would have joined Team Challenge WI; i may have eventually ran a half-marathon in my life, but not with the support of others who currently live in a state of what-ifs:

i never would have realized my love of non-profits.

i would have never hosted blood drives, became an ally to someone in need & most importantly, i never would have become an advocate

i never would have corresponded with people in bangladesh, sweden, russia, new zealand & england.  as of this morning, my blog has reached over 100 countries. i cant imagine not being able to have the opportunity to meet these people.

i never would have dedicated my life to serving others:

i never would have loved my body; before i was diagnosed, i was self-destructive. i hated who i saw in the mirror. my self-destruction was mostly inside. and though i LOVE my body & who i am today, i still cover up full body mirrors.  im not there yet, but ill get there some day.  its fair to say that crohns HAS robbed me of my body image, steroids, memories, physical injuries… but its also fair to say that after all the things ive been through, im still smiling.

without my diagnosis, i would never have started #purpleproject & realized there are WAY too many people suffering with chronic illness in our world and the one thing they really need is support.

i have no idea what the next 10 years will bring, but i hope sometime within those years, the money we’ve worked so hard to raise, will lead to more effective treatments & eventually a cure.

10 years is 10 too long. 1 day is 1 too long. i have no idea what the future will bring for me but if its half as educating, enlightening & discovering what it has made me.. i will continue to move on. stronger with each step.

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achieving 13.1

before you read this, i ask you one thing… what is one thing you’ve wanted to do or see in a lifetime? there many goals i set for myself just in the last year, but one i had my heart set on. 13.1. that sticker. that feeling of accomplishment, despite something so much bigger than i.

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the road to 13.1

what was the thing you wanted? what prevented you from thinking you could do it? what made you decide to go after it? who helped you get there?

ironically, the road to wellness is generally a marathon, not a sprint. why did i expect anything different? the past 4 months have been proven to be anything but easy. ive been guilty on many occasions of feeling bad for myself & will very honestly tell you that out of the 10 years ive lived with my diagnosis, this has been the hardest yet. it was clear to me in mid march that i would likely not be running the 13.1 miles i had promised myself and dedicated so many hours to train for starting last june… i hadnt felt “good” since fall but became sick quickly into a downward spiral in feb-march, hence the hospitalization and quick surgery.

after my hospitalization, i became sicker when my Crohns traveled to my small intestine. few weeks have gone by since march that i have been to work a full week. im exhausted easily & my pain has tipped at an all time high. since my diagnosis, i have been to the ER 3 times related to IBD.. including my near-death experience at age 16. the 2nd & 3rd times visits were in the past 3 months.. related to obstructions & narrowing of my terminal ileum & other unbearable pain of my hands and joints.

01340c2e26f2476e26182fe5066c8cafc53060e6e5what felt like all of the negative forces in the world working against me, a month ago, running 13.1 miles wasnt even an option for me.. it was hard to walk through an entire hallway at work without becoming fatigued and having to sit down. it wasnt until april/may i had eaten my first solids in over 13 weeks & kept them down. i had hope, but i was skeptical to say the least. i could write a book titled “places ive shit my pants” and there would already need to be a volume 2.

my GI in Madison put in very kind words in an appt w/him that i should not be running, seeing as that i could barely go a week without IVs…. still, i tried; puking or not, to walk or do intervals of 3 miles. i felt bad for myself. i cried. i did the one thing you should never do in life – i compared myself. the person i once was & the person who i became while mourning the person i may never be. ive said it before & ill say it again – illness is like an unending cycle of going through the grief stages in a period of death. sometimes you experience each stage, in random orders, sometimes the same stage twice. i was devastated i would be unable to even walk half of the miles i set out on doing in to honor many loved ones w/IBD. i would sulk walking past my running shoes on a daily basis.
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i felt like a terrible teammate because many of the practice runs in MKE were spent in the hospital or in the ER.. or just sick. i felt like i was disappointing everyone around me, especially those who had generously donated and given me so much strength to live through the pain i was going through. i wasnt living the vision what i wanted to initially wanted to do with #purpleproject and it killed me. i tried to adapt, but even putting together packages became overwhelming at one point.

the day i traveled to Chicago to run my half, i received amazing news the day of my surgery consult – my remicade was working. my obstructions were gone & my terminal ileum was not narrowed anymore…the fact that remicade has started to heal all of my previous blockages & ileum is completely amazing. for once my body was on my side!
and then this happened…

boom.

boom.

and in the blink of an eye all of this is seems SO unimportant in the past in the grand scheme of things. in many ways after patients leave the hospital is really when the emotional side of chronic illness hits. there will definitely be a chapter in the future dedicated to this.. even through all the BS days ive dealt with just since january, despite so many things i was & still am up against… i put on my bad ass, “screw crohns” pants & i ran 13.1 miles.. #becauseisaidiwould.
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from the beginning of our weekend in chicago to the end, it was filled with Hope – something that began to slip away from me within recent months. i never expected to break down in tears the night of our inspirational dinner. tears of who i was, who i am & who i have yet to be. to be surrounded in hundreds of people living with similar stories as you, rooting for you & fundraising to see that cure sometime in your lifetime is…. well, there are no words. for once in my life, i felt like i was where i needed to be. and of course, one of my greatest advocates and friends (who happened to be my TC mentor) was there to give me hugs and let me cry. because, thats nicole. shes my pancake, and she has gotten me through so many of the hard weeks in and out of the hospital. have i mentioned what a badass, resilient woman she is? girls got guts.
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the morning of the race i intended to walk the first mile & try to do small intervals as long as i could, expecting no more than being able to hold out for 5 miles? that shotgun went off and i jogged for 9 miles. pure adrenaline, emotion & heart went into those 9 miles. and i cried.. the first time when i saw teammates megan & eliza rooting for us on the course. 13.1 miles is a lot of time with God. i got sick once at the turn around point but ran into other TC teammates from new jersey & kept going. around 10.5 my body gave out. it wanted no more. then Coach Tim came. he walked the last 2ish miles with me & made sure i was okay. we ran through the finish line & walked to the med tent. i saw God that day in so many people, but Tim was for sure one of them. these people that knew why i was missing practice every week, and said prayers and sent messages each week i was absent. because TEAMWORK. running after a cure. as a family.

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13 miles dedicated to the bravest & most courageous souls i knows. how am i so lucky to know these people?

today i am stronger than yesterday & tomorrow ill be stronger than today. ive definitely had many setbacks since my hospitalization trying to figure out my inflammation levels, why im so dehydrated, my “ghost” pains in my left side finally subsiding and my ability to eat again. literally the day before i ran my half-marathon, everything was unknown & very unsettling. this attitude was quickly squashed by my loving Team Challenge teammates, many who have been & are in the same exact place physically & mentally as me.

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in all of the 10 years ive lived with the diagnosis of IBD, this was by far the hardest & most-rewarding year for me as a patient. a short-term distraction while being sick turned into a long-term project completely off course of that goal – dedicated to those living with chronic illness. i became way more involved in the activist community when ive been able to & ive become closer to God…. oh, and i ran 13.1 miles on june 7th. i will remember that day forever. ps – did you hear i ran a half-marathon?

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10 years is 10 too many. 1 day is 1 too many. lets end crohn’s & colitis. please consider donating to research a CURE. http://www.active.com/donate/chicagoWI14/kellyontherun