#purpleproject runs the Vegas strip at night!

since i have had so much support & love from all of you in the past, id like to let you in on a (not so) little secret – in november, i will be running my next 1/2 marathon with CCFA Team Challenge – raising funds each mile i train (with Charity Miles) & also with a goal in mind of raising $4,142 – to represent the number of days that i will have been diagnosed with Crohn’s Disease.

training for any endurance event with a chronic illness gives patients an exciting form of anxiety. the last few events ive trained for, they werent under the best circumstances (separated shoulder, Crohn’s flare/rectal surgery & raging arthritis) but i overcame them & was able to still finish last years Chicago half-marathon, meeting a crazy ton of you all who follow this, my IG account or my Facebook page. since then, i have “met” SO many people that i will meet up with in Vegas in November & i could not be more thrilled to be running with & next to the most dedicated, hopeful people i call teammates. how lucky am i??

there are moments with autoimmune disease youre not sure if youll make it another day. since we dont get to pick and choose when those days, weeks or months will pop up, ill keep fighting for the good days – so one day this disease is not used in the present tense when we talk about it & educate others.

here is my link is you’d like to share. id love your help to exceed my goal: http://online.ccfa.org/goto/purpleprojectVegas15

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there will be much more to come in the next few months & id love to have your support through it all. follow me on my next TC half journey to Vegas by following the hashtags #purpleprojectrunsVegas & #onamissiontoRemission and yes, you may see a #runningtothebathroom here & there… because, Crohn’s.

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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

april showers

its been nearly 5 months since ive wrote. ive started a few, but became quickly tired. honestly, i had good intent to finish.. but the handful of times i actually had time to sit down, i found myself rereading things i didnt feel anymore.

holidays have passed, awareness weeks, as well as seasons & unfortunately, some of our loved ones as well. it was a long winter, but i know good things are in store.

i have had ups & down, but this is the first March in a few years i didnt spend any weeks in the hospital. for this, i am extremely grateful. i DID spend a lot of time at different specialists & unfortunately i will be adding more members to my care team, but i believe this is the right direction. im pretty sure if us patients collected badges for every doctor visit we had, we would need multiple cub/girl scout uniforms to hold the number of badges we collected.

ive been having a rough go with my body adjusting to meds. ive tried acupuncture that has helped with nausea & vomiting, but found that i was spending more time arranging appointments, driving as well as the cost of the appointments.. it helped a lot, but also really, really irritated the neuropathy in my body & i found myself expending way too much energy trying to heal from my appts.

my body is tired & my eyes are misty. i feel weary about where my regimen will go in the future. my infusions are faring my stomach well for now, but i dont feel like i am where “should” be. i find myself recovering from meds my body needs much more than i am healing & finding a happy medium. what would be simple infections to most people have plagued my winter.

im excited for more projects than i can count on one hand. being invited to patient advocacy summits, seminars & being an ambassador for multiple non-profits i truly enjoy working with that make a great difference in the care that patients receive. im humbled to be asked to represent part of the patient community, and being able to share these projects so that this audience is able to participate in makes things worth the sweat! teamwork makes the dream work.

i look forward to writing more. i have been saving pennies purchase a nice computer that i can rely on to share valuable information.

my heart looks forward to so many things: racing, fundraising, being a patient advocate, meeting so many of the friends that have changed my life in amazing ways & traveling. also, shark week.

life is better in color. <3

life is better in color. ❤

“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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