perception & icebergs.

(for a better reading experience, pop this blog up on your desk/laptop & grab a snack & come on back.. cause i’m bout to spit some truth.)

the past few weeks have been nothing short of emotional, unstable & a bit off track. but there have been plenty of moments in the last few weeks that i have felt support & love when i have needed it most.

i never expected to enter my thirties as unemployed & single, barely scraping by. but then again, i never expected to be diagnosed with something that would absolutely turn my world upside down exactly 13 years ago. thats right, 3 days after my 17th birthday i was given the “gift” of IBD. a 3-letter acronym for something i would come to know as a blessing and a curse. that acronym that would continue to follow me like a shadow through the rest of my life in the form of pills, procedures, surgeries, therapies, many, many setbacks and alternatively, opportunities to try and pick myself back up when things fell apart.

for 13 years, ive experienced complications from biologics that are meant to slow the progression of my disease, to keep my inflammation at bay & ultimately, try to reverse the damage that has already been done to my organs. for many of those years, denial was a friend of mine; some days, it’s my best friend lately.

for the greater parts of the past 3 years, ive struggled with many complications of “extra-intestinal manifestations“. ive also been diagnosed with several other related & unrelated autoimmune conditions as well as inflammatory conditions. it seems like IBD never wants to be friends with the others. when my inflammation in my body is finally settled, my Crohn’s starts to flare even worse. when my Crohn’s is very active, there is very little i can do to prevent my body from going absolutely haywire.IMG_0118 i develop ulcers, eye infections that can cause permanent vision loss if not treated immediately. my arthritis can be crippling & that, is an understatement. IBD has taken a toll on my skin, causing ulcers, painful scabbing/sores that take months to heal due to a suppressed immune system. my hair loss from the form of combined chemotherapies that are injected & infused makes my hair fall out; you might notice that it’s curly so you compliment my “natural curls” but what you don’t see is the damage and changes to my body that my therapies have done over a period of 13 years. you cant physically see the loss of bone structure due to long-term, big bursts of steroids, causing osteoporosis. complications that aren’t visible to the naked eye like pancreatitis, uveitis, kidney failure and delayed growth due to malnutrition. (and guys, you can still carry extra baggage living with Crohn’s disease or ulcerative colitis and completely lack proper nutrients and vitamins. weight loss and weight gain does not discriminate in autoimmune bodies.) when you add in other diagnoses, some you never expected, you can imagine the list gets longer and definitely scarier. when it happened to me, my body began to shut down on me & soon my mind did as well.

which leads me to my next point: mental health. a symptom, or consequence(??), one might say, of living with a lifetime illness. panic attacks, sleeplessness, worry and fear. and one day, it all comes crashing down in financial crisis, losing your first job due to health and worrying about not just the next few months, but how you pick yourself up physically and emotionally, to get through day by day & lately, hour by hour. because of the cloak of invisible illness, some people think they get to have an opinion on how or why you get things done, in the order you do them. some people want to silence you and your voice, even when asked, falls on deaf ears…. because let’s be honest: some people just don’t have as much compassion as you’d hope to see in the world. there was a post i shared on my public Facebook personal blog regarding the US healthcare bill and how it will factor into the way healthcare moves forward as a nation. the ONE post i put up resulted in at least 10 nasty messages i have forever stored away in my brain to help me fight my hardest when my friends are at their weakest. most messages were just filled with curse words telling me i should lay down in my grave for sharing political posts on my public HEALTH ADVOCATE blog. i even received a death threat. for telling the public about my fear of losing the right we call “Healthcare”. and how it would personally affect me if i lost my insurance. there will always be people that want to bring you down and spit at you. because.. they don’t live in “our” world. don’t let the trolls turns your embers into ash. refuse to be silenced.

IBD is no walk in the park. and recently, i’ve found myself figuratively sitting on a park bench, watching other people stroll by hand-in-hand, laughing, enjoying the gifts of life. as a passerby, their life looks perfect to me. but living with an invisible illness myself, i know that couldn’t be further from the truth. that mom playing on the playground with her 2 kids under the age of 6? she could very well live with an illness that causes her to feel miserable and unable to get out of bed due to degenerative pain, fatigue and anemia. but today, she feels well enough to be able to take her kids to the park, to give 110% of the energy she didn’t experience the past few days, due to a disease that people don’t physically see. you see, when somebody breaks their arm, it’s visible & people ask about it. they want to sign your cast, bring you balloons and flowers and with time, hopefully that break heals correctly. with an invisible illness, even mental illness, people don’t see what’s “broken” or in pieces. they don’t see the fear i have when i am walking to my mailbox, only to find another claim i’ve fought my insurance for has now gone to collections. they don’t see the 10’s of thousands of dollars of debt living with illness costs. they don’t see you choosing prescriptions over food. or vice versa. they take what they see (or want to see), make a judgement & quickly move on with their lives.

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we live in a society with social media and with that, comes the need for approval. browsing through many peoples social medias (yes, me included), we are a vain society. their starbucks cups, the “outfit of the day”, communities of runners, athletic, beautiful models who…. aren’t like me. “my” community is a diverse group of people who struggle with trying to find themselves through fitness, meditation or somewhere in between…. and illness. if we don’t see something on the surface level, we are to assume that everything is tidy & perfect within that persons small window to their lives.

being in the illness community for over 13 years, i’ve learned that this isn’t okay. because others aren’t able to see certain manifestations or symptoms of our disease, we feel that we have to be validated when someone says “well you must be feeling better” or “well you were able to do A or B this weekend!” the thing about autoimmune disease or any chronic health issue, is that if you don’t have it, you may never “get it”.

example A: can you tell that both of these were taken within 1 day of each other? both extremely ill, anemic, needing multiple IVs both days, could not walk or leave the house & had a wedding to go to the next day.

 

example B: having surgery & somehow finding courage to run my first 1/2 marathon 6 weeks post op:

 

example C: having not ate solid food for 3 months, attending a wedding in the attempt to prove to myself & those around me “i could do it”. i threw up in the bathroom for 20 minutes & made it for an hour that night. most of my attempts at normalcy comes at a great cost. i was back within the hospital that weekend.

 

i guess my point with only some of these pictures is that people living with illness CHOOSE what they want to share with people – in person, over social media, etc. what you don’t see are the hours spent in testing, the machines i go in and out of, the spinal taps & infusions that result in days and weeks of recovery. though it sometimes has the opposite reaction, my hope is that someday people will have a better understanding of WHY i run & hike & explore the outdoors when i can… and even when i’m hardheaded and cant, but do it anyway. people will choose to see what they want, but my intention is to be real & authentic, for as much as i’m willing to share.

on my bad days, i know that i am not able to leave the bathroom, due to a multitude of reasons – pain, cramping, rectal bleeding, fistulas, vomiting. it doesn’t end there. over the past year, i have made myself a fortress of pillows and blankets between the bathroom and the hallway just so i can hopefully make it to the sink or the toilet. over the last 4 months, there have been more times i’ve lost control of my bowels in public then in the last 13 years combined.

as a person with a healthy immune system, you may not know that the last three nights i’ve gone to bed at 5am, only to wake up in excruciating pain in my bones and my skin and my eyes an hour later. but somehow, over the course of a few years, my body has adapted to this lifestyle – this is my norm. on a good night, i wake up at 4:30am and start my day in the bathroom. the next few hours are spent between a chair, the bathroom floor & my closet floor. around 11am, my body slowly starts to calm down and i try to go about my day. there are days that this fatigue causes confusion, dizziness and syncope and overwhelming anxiety. on a good day, my body usually begins to give me a sign that it’s had enough & is shutting down, usually around 3-4pm. after that, if i’m able to sit down, fatigue hits HARD and its not likely ill be able to do much that night and into the next day.

a 30 year-old that goes to bed at 8pm in order to be awake at 4am to be sick – i say these things not for pity. i want to be transparent as possible because there is SO much i do not share with anyone else being in and out of clinics nearly 3 times a week. i don’t blog to be validated or to seek out attention – that never has been nor will be my purpose. when i started blogging, i wanted to be someone that i needed when i was diagnosed. our world has certainly come a long way in terms of resources, communities and avenues for those who are newly diagnosed to explore. but acceptance doesn’t come the day after you’re diagnosed.
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ill be honest, some days, living with an illness feels like an elephant that has sat on your chest. he doesn’t let you leave the house, he gives you panic-induced dreams when you are able to rest and he makes you fee isolated in the darkest of ways. he tells you “no one gets why”, “no one believes your pain, i can’t see it.” “no one will validate you for missing this – work, family gatherings, outings with friends.. and especially with food”. “no one cares”. and mostly… “you’ve let me down so many times”.

but then you find the people that understand. the ones who have experienced it & have cared for loved ones who suffer with a long-term illness. & if you’re really lucky, a care team that refuses to give up on you. a team (courtesy of Steph from The Stolen Colon) that wants to find answers just as badly as you do. if you’re young, you will find someone who is strong & determined enough to advocate for you. within those next few years, you’ll learn that being your own advocate is a choice you don’t get to make. you’ll come to know that even at your sickest.. your lowest, you must fight. fight for answers, fight for new therapies, fight in order to survive.

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reading my words, hearing them from my lips, passing my by in a public place.. you may never understand how or why i try to  escape my reality by pushing myself to extremes when i’m able to. & allow myself to push my body beyond barriers and limits of my dysfunctional life. my immune system decides what 80% of my day will be like and if that 20% let’s me feel normal, you’re damn right that i’m going to push my limits. people without illness really have a hard time grasping that i can go from this to this or this to this within 48 hours.

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my simple explanation will likely never meet your standards & i’m okay with that. because i, and no one else, live inside my body & know when to push the limits. to feel like a normal person. to try and get a taste of what being a fully-functioning adult really feels like.to live for a day without blinding symptoms that take away my ability to go outside of my home and actually do things a person without illness can do without having to put any thought it. the difference between those with and without illness is simply knowing that expending a certain amount of energy one day, may or may not paralyze you the next. and that is my life with IBD; uncertainty of how i am going to wake up each morning and deciding how or when i can use what little energy my body allows me

in my next 13 years, i hope that the man i will someday choose to love will see and accept me not for my curse, but as a blessing. i don’t want to be seen as my illness & i’ve also learned that i do not need verbal validation how sick i am or have been, yet pretend to be a normal functioning human all at the same time. i want to be seen as a wife, with a compassion for serving others, with kids at my dinner table, in a house that i own, with a dog sitting next to my front porch swing. i want to cross a thousand finish lines without raising money to find a cure for a disease that will be in full Remission, with hopes of being so much closer to a better quality of life with this illness. my hope is that in my lifetime, i will see better therapies, better care & more compassion to those living with illness – both visible and not so visible. i want to be healthy enough to take care of my family, be able to conceive children if God has this in His plan for me and i want my life to be more meaningful, grateful and full of.. well, life.

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something very beautiful happens to people when their world has fallen apart: a humility, a nobility, a higher intelligence emerges at just the point when our knees hit the floor. – marianne williamson

for information regarding extraintestinal manifestions, visit:
Very Well -What Are the Extra-Intestinal Complications of Crohn’s Disease?

http://online.ccfa.org/site/DocServer/Kim.pdf?docID=25687 

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

being active while flaring

throughout the past 9 months, ive used my energy sparingly.  ive had ups & down and through the times ive spent in between trying to heal, there have been many moments of acceptance, and sometimes of denial.. cycling the stages of healing.

the past few weeks ive done a damn good job of putting my smile on (sincerely meaning it). ive learned over the past year how reliant people have become on my advocacy…. texts, calls, email beeps in the middle of the night from scared patients, some people need emergency advice & some that just really need to hear that they will get through the night without their pain killing them. let me be clear: i in NO way, shape or form would change this.5-17-14 414though i dont have an ostomy, ive been able to help other with them with other aspects of how their IBD affects them. if there is a patient/friend who needs help & i cannot answer, i find out the information for them, or connect them to the right person.  i am the type of person that will not rest until ive thought of a solution where i am able to bring at least 2 good options back to them instead of just the problem.  im solution-oriented; and when i cant answer…. i research until my brain is fried. there are times that it is SO clear to me God gave me this life because i AM strong enough to live it, but i am also encouraging enough to make others feel that one day they will also feel the same way.64917faabd5fe5a7059db2f1b0f2057aim exhausted being there for people while trying to keep control over my physical, mental & social life…. but i chose this life of advocacy because no one needs to feel alone living miserable for an extended period of time. when the stress builds, ive become good at recognizing that & knowing when i need a backdrop of crickets.

my kind of night.

living with chronic illness, there are two choices to have: be a victim or .. in real life terms… life lessons with chronic illness are comparable to being a colander in how you would drain water from noodles, fat or the rest of something that doesnt belong. when you go through struggles that give you opportunity, use your colander to dump out the excess stress and keep in the bowl the things youd like to learn from that experience.. things that will help you overcomes obstacles in the future.
20131216-204808.jpgthe figurative mask i wear at work, while im out with friends & in public.. i dont do it necessarily on purpose to deceive people.  you may very well not know that i spent the entire morning puking out what i ate before, in the bathroom before i went out for the night (NOT getting read) or walking as straight as i can when my hip hurts..

this week i pretended not to have a disease (you do this a lot, as often as you can) but there are days when this works better than others. this week was no different than any other, but i tried, overwhelmingly.  though i had a very bad weekend last, i was determined to make it a good one this week, slowly but surely.

aint no party like a neb party

lately, my hands feel like theyve been crushed multiple times in a large vice. ive been trying just about every suggestion to keep them comfortable, but i wont know more until my appt with my rheum this week, where we’ll be upping the methotrexate again. its hard to hold pens, they stiffen or cramp at the worst time using them at work & its impossible to do my hair.. you dont know what pain is until youve braided a long pony tail over and over and over. im not ashamed to admit i cried every time i tried. 37456688236b5eba0e236fadc5bed694in the past 6 months, ive had other people even do my hair because it is so frustrating & painful.  i think mom is starting to get it when i have the hand flars.. not that she ever didnt, but she like most people assumed towards the beginning that the warm water and soap would be good therapy.. this week i even let her braid it (getting me to sit through a hair brushing or braiding my hair when i was little was like trying to baptize a cat…. things havent changed much).photo6my pain scale was off the charts in my hands & left hip this week, but i moved about my business anyway.

played piano for a 1/2 hour every day. frustrating to re-learn something you havent touched in over 12 years but i promised myself i would do it. not only does this increase blood flow to my fingers, but its the best workout for my thumbs right now, which are the most affected. (shout out to Pat & all my amazing family to help make that happen…… even though there is a creepy lady that comes on & tells me “come play” when i forget to turn it off.

meow-zart.

went to the driving range with some girls from work & lasted about 45 minutes before i totally lost my grip. the 3 of us wanted to do the 9 hole course the range had behind it, so i happily went along for the walk. i put on a few miles that day so i didnt feel too bad, since im still a few weeks out from running.. the lack of activity is really getting to me & leaves a lot of time to overthink things. (august cant come soon enough).

photo7this weekend i went kayaking down the Wolf & had a blast. by the end of our trip i couldnt walk nor nearly hold by paddle, but it was a BLAST. when you hang around people without the issues you have to worry about, it feels so great to forget about it & just live. im thankful for friends that see beyond my disability & are willing to ask me if id like to go along anyway, even if ive declined their offers 50 times previously.

only tipped er once!

being active with any kind of autoimmune disease or chronic disease can be hard.  i never know when im going to need to use the bathroom next, so i plan my running routes around where i know permanent restrooms are or where the port-o-potties are. during the summer i lived here, i knew exactly where each pit stop was from my house to lambeau field & back. the ONLY time ive ever had a problem was the day they took all the ports out of the parking lots & was left running to the nearest gas station.
true_porta_potty wear your roadID, use your roadID app or an identification bracelet when youre in public & happen to find yourself sick. i hate having to wear it, but my medical alert bracelet goes with me no matter how far from home im running – it may save my life one day. when i run, using the roadID app, it will notify my emergency contact if ive stopped and have no activity for a certain number of minutes.

do your stretches, properly any time you are moving about. foam rollers might be your worst enemy, but they will soon be your friend once you find your rhythm. low resistance exercise may be the only form youre able to do while you flair.  meditate, do yoga… keep your mind moving & your joints too. “motion it lotion!”

indexmy rheum told me to try massage therapy….. while i wish my first one would NOT have been after a day kayaking several miles, any other day it would have felt amazing. this appt was scheduled months & months ago and couldnt cancel it, so i went anyway.  DO NOT DO THIS.

whatever is it youre doing being active, bring water on your water pack, 3 miles or 13.1 miles; biking, running, or doing yoga. im amazed how many strangers have stopped when i take a pit stop & dont look too good.. seeing kindness in strangers is amazing during runs.

also, high five passerby’s. always high five.high five

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