a full cup to 2018

pop, fizz, clink.

boy am i ready for a new year. a chance to get things right. a chance to do better.

as i look back on 2017, there are so many things that i must acknowledge that i lost – my health, my job, my savings and nearly my home. but what’s most important, is that even though i thought i lost myself, i didnt. i discovered many things in 2017 that have made me a better person, a more empathetic person and a better patient mentor. i also discovered that when you hit bottom, the only place to go is up.

still dealing with a new neurologic diagnosis and waiting for another unknown that has been looming over me like a dark cloud for the last several years has worn me down. it has broken me at moments and tested me during many others.

in january, i underwent a simple procedure to test for certain antibodies for several degenerative diseases, as well as to rule out any possible infection that was causing my symptoms. thankfully, i was infection free, but the spinal tap came at a cost and not just financially. about a day after my test, i developed a terrible mind-splitting headache, something that can be a result of what’s called a “spinal leak”. i had to go back to the ER to get not one, but two epidurals, which were both very bone chilling due to an error made by a medical provider. thankfully, the anesthesiologist that helped me, held my hand and let me lean on him while another doctor did what he needed to do. about a day or three later, and much laying on my back, things went back to normal.. until they didnt.

if my gut wasn’t triggered by my head, my head was triggered by my gut. and during the winter months, my arthritis wages a war on my body that eventually led me to where i am today.

i have to believe that things happen for the greater good. for me, losing my job to illness was punishment at first. it took me nearly 6 months after leaving to realize that my body is just not cut out for a salaried, full-time job. ive begun writing full-time, for a great company who supports me and never expects more than i should give. let me say that again. when negotiating, this company told me to “only do as much, when i could and wanted to”. working with health advocates writing about many different types of diseases, their clients, as well as content writers, obviously deal with illness first and life second. soon after, i realized this was what i was looking for, for so long.

it wasn’t long after that i secured a part-time job. and then a 3rd and a 4th. it seems i was busier working part-time than i ever was full-time, but it was a good kind of busy. my priorities finally began to fall in line, for what i needed to do for myself. i got in line with my doctors and made sure i had what i needed to be successful in the coming months.

and then i lost my insurance.

turns out, medicaid doesn’t like when you make $7 over the allotted amount for the month. and just like that, i was in limbo. i was a 29 year old woman with many pre-existing conditions, terrified of what lie ahead. i had already been waiting 3 months for a prior-authorization for my next biologic to go through… when i lost my insurance. the last day of october, i received a letter in the mail stating my coverage was ending november 1. what a kick in the ass. how many more times could i be kicked while i was down?

so i began to live in a state i never thought id live in: i was uninsured despite being ill.

so much that others take for granted that the ill can only see in dreams and in desperate moments of hope. when is health actually valued to someone who has theirs? ive spent the last few months getting by on what i could. at one point, i qualified for food stamps – something i never thought would reach. im so grateful for those 3 months of help, as my nutrition has already been at fault by flaring quite a bit since my last scope.

it wasnt until i started serving the homeless at a local shelter that i truly looked up from my knees in my weakest of moments and realized how ungrateful i had been for all that i do have. i may not have found Remission, i may not have found a drug that controls my neurologic deficits and i may not have been insured, but what i did find was far more significant than myself. i quickly realized during my interview how closely i had been from being homeless myself, that things can change – for anyone – at a moment’s notice. 6 months ago, i could have ended up at a homeless shelter, and now i find myself serving the guests there working what few hours my body can tolerate in addition to writing full-time, caregiving on the side as well as a pet-sitting business.

you win some, you lose some. by losing, i won so much more

i dont wish being uninsured (& uncared for) on anyone. but i learned a lot in the process. have you noticed how many “i” statements are in this blog? i have – pun intended. throughout the last few months, little by little ive started to regain a little bit of my self-love that i had lost for myself throughout the last few years. i began doing things for myself, in my best interest, even though someone else may have been impacted in a good or bad way. i had to back away from social media quite a bit (as well as my blog) in order to regain a sense of purpose, timing, and appreciation for living in the moment.

in my fight, i learned how much my doctor and care team had been fighting for me, despite how long we had to wait. i learned how much other doctors, some many miles away from me cared and made sure that patient voices like mine were heard. i learned how much i must truly depend on myself to advocate for myself, instead of others. and i learned that was a really difficult thing.

things happen for a reason and even with what little i have right now financially, the little in my heart & head means so much more. and in all of the jobs i do, i have found a way to serve others. maybe it’s selfish to find such happiness in serving others. it’s something i’ve thought so much about this year – my ability to care for others so deeply, yet lack self-care for myself. so that is what i continue to work on. not as a resolution, not as a “turning over a new leaf”, but as a deeper sense of who i can still yet be to others, and to myself.

i hope 2018 brings each and every one of you stabilized health, a solid, honest support system, enough food to eat, shelter to keep warm and self-love to continue fighting whatever it is that you may be fighting.

you matter. i hope part of your goal for next year includes self-love, self-care, and self-admiration…. for as we all know, you cannot pour from an empty cup.

all of my heart,
kelly

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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.)

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

“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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