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.)

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

“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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