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

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new demons to battle

WOOF. what do you say when youre angry, sad, confused & have absolutely zero energy to hold any of the above emotions at all?

im glad i waited a few days to update, because there have definitely been some angry moments of reflection. superman juic

its no secret i havent been feeling well at all lately. i wake up in the middle of the night & start to blow chunks all over. im uncomfortable in any sleeping position. the pain in my body combined with the wounds i have going up in to my colon have put a huge dent in my sleep. im talking maybe an hr or 2 a night. it literally feels like my butt has teeth & it is chewing shards of glass.

after an exam on tuesday, the doctor got me going on 2 forms of chemotherapy that will hopefully aid in the healing of the significant issues ive been having with a fistula & a fissure. after hearing several sighs an “oh my gosh” and a “we need to repair that right now” i felt less than thrilled about what i may hear. he did tell me i need to have it repaired, but how much depended on how my body decides to respond to the remicade. in order to avoid complicated surgery, i need to start them both immediately to avoid further damage & hopefully stop it from spreading to the greater part of my colon. we will know within 6 weeks if they are working. i have a good feeling about this doctor; he was kind, he did his research about my case & expressed genuine concern to meeting my needs. i truly feel as if my journey to remission is so close.

in an effort to save the part above my rectum that has not been damaged yet, i started Remicade (today) again in addition to mercaptopurine (6-mp). i will know within 6 weeks if this fixes my fissure & fistula.

he did say we are taking a chance by starting remicade (infliximab) over again, since it has failed me once. but in the 3-4 years i was on it, it was probably the closest to remission i had experienced since i was diagnosed. to spare me some costs, were trying to avoid more genetic blood tests, since they are NOT covered by insurance & usually run upwards of $1000 each. i also risk the chance of having a severe reaction, after stopping it for so many years & developing anti-bodies to it.. but if i dont start NOW, i will lose part or most of my rectum and colon. (now you see why i advocate?) by the time we would receive the general genetic markers & anti-body tests, the damage may already progress, so.. were risking it. i need the medications & i need them now. i started the oral pill immediately on wednesday & had my first loading dose of the infusion today and will have another in 2 weeks.

for now, im on a liquid diet in an effort to try and not have any output, as to no irritate the area more than it is already. i am hungry, and weak and im tired. i came home from my infusion and i slept like a rock for a solid half hour.

im not sure i have more to say than that.. now its a waiting game.  im angry, i have no energy, i dont sleep; even sitting down it feels like im getting a rectal exam, but with a cactus instead fingers. i cant run – while my team has just begun practice last week, i can barely even move without losing an alarming amount of blood. ive been puking on & off for weeks & have at least 8 or 9 mouth ulcers. knowing i have 6 more weeks of waiting and feeling like this makes me mentally drained. i found myself at my desk on wednesday welling up in tears and i had not even been thinking about it. by the time i made it to the bathroom, i was sobbing. it hit me like a ton of bricks that i may lose part or all of my rectum for something that seemed so minute not long ago.

on a mission for remission!

 

before i got sick

the following is a collaborative piece that would simply not exist without the knowledge you have all given to me. i dedicate these words to all of the generous souls who have let me inside of their personal worlds. on the good days.. and on the worst days of their lives. this is my love letter to all of the people who have made an impact on my personal journey.

dont let my positivity fool you. i have had hardships and struggles in my life with disease. i will not lie; there are days i quit, knowing i can start over fresh the next day. but the things that have been taken away from me due to my disease, have in turn provided me in opportunity; ten fold. friends, networks of support, communities filled with IBD & autoimmune patients just. like. me. who knew?

27 things i intend to do before turning 27

sometimes its the simplest things that make us happy….

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1. continue to be as happy as i was at age 26 (what a good year!)

2. learn more about sharks. because i can.

3. find a diet regimen that works well with my IBD (a challenge, since your body doesnt always except the same things)

4. go on more dates.

5. become a damn good thrift shopper.

6. build an even more amazing team at work.

7. maintain a healthy, consistent weight (even while being on steroids).

8. play “future days” on the piano by heart.

9. rehab my knee to be the strongest its ever been (including before surgery)

10. have mom & dad both guest blog.

11. find a hobby i am good at.

12. partner up with BloodCenter of WI for a Green Bay blood drive.

13.1 = run a half marathon with Team Challenge Wisconsin.

14. give support groups another chance.

15. become a ‘big sister’.

16. pay off a chunk of my medical debt.

17. actually read the magazines i get.

18. become more extroverted.

19. learn how to finally perfectly poach an egg.

20. pray more.

21. grow my own vegetables.

22. learn to french braid.

23. be more creative.

24. write more snail mail.

25. go paleo for 1 month.

26. golf.

27. develop #purpleproject into a long-term plan… 🙂