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 

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.  xoxo, kelly

before i got sick:

  • i didnt understand what health was. i had no idea what crohns disease or ulcerative colitis was. i took what i had for granted – i never knew any difference. “health is never valued until sickness comes”; its true. until you get an eye-opening experience or diagnosis, you tend to take things for granted.
  • i didnt know what the word “remission” meant. other than remission of Cancer. but Remission is real. i capitalize Remission because it is just as more important as any disease. but remission is REAL, and people experience it – i will, too.
  • i could spend the night at someone elses house without worrying i would wake up in a panic, sick to my stomach.
  • i never had to worry about pulling over on the highway puking my guts out or keep an empty grocery bag handy in case i cant stop going 70mph on the highway, but such is life living with GI diseases.
  • i didnt feel guilty about cancelling plans.
  • what the hell is moonface?
  • i could run competitively, but chose not to. looking back, im upset with myself i was not more health-conscious.  im aware i didnt do this to myself, but after i put my health (or lack of) into perspective, it was clear what i wasnt doing that i was capable of doing.
  • i had no excuse not to eat my vegetables. now that i have IBD, its not even a choice.
  • i didnt have to depend on people. my doctors, my parents, my support system. helplessness sucks. i depend on doctors offices, medications and visits to the ER to keep me out of surgeries. to keep me alive.
  • i didnt know i would have such shitty luck with incontinence at a young age.
  • i had no idea my future would be in the care of others. on my journey to wellness, i discovered my heart was in helping others.
  • i didnt know how much fight i had in me.
  • i never asked for help. luckily, and thank god, i have parents that know when i do need help and go out of their way to help me with daily tasks im not always able to do myself. 
  • i didnt know what friends were. anyone with a chronic illness has a certain “you learn who your friends are” opinion.
  • i didnt know that i would like take a form of chemotherapy the rest of my life. before i got sick, i didnt know that chemo was used for anything else other than cancer.

a little help from my friends…

  • i never failed a class, my house was clean, i actually had sex and had never had an IV. before UC, my marriage was strong, but not colitis strong! – katie w.
  • i was a work-a-holic who never stood still, never enjoyed or had time to enjoy the simple beauty of life. never took medication not even for a cough/cold and was happy traveling, holidaying and exploring the world. i have had time to evaluate life and realize who I am. – victoria
  • i was a bit of a self-absorbed jerk.  Crohn’s Disease has imposed limits on the amount of energy i have and has made me think about where – and with whom – i choose to spend that energy.  it has allowed me to connect with some truly amazing people, otherwise known as my “IBD Family”, and has given me an opportunity to slow my life down and realize that the most important things in life aren’t things.  basically speaking, having Crohn’s Disease has made me a better person in every way that counts.- stephen dempster
  • i don’t find much holds me back. i try to make light of it. in work meetings when my stomach makes huge noise like normal i say “my Crohnie doesn’t agree”. raises a smile and diverts attention from the noise and people stop noticing. much better than when i sat my exams and used to hold me stomach tight so it wouldn’t groan and moan.- crohnies in need
  • before i got sick i was really blind to those that were. i would always help those in need but sometimes my mind would tell me they are faking, because i couldn’t see it! this is the reason now folks hear me using the line “But you don’t look sick” because i don’t but am. – joshua robinson
  • i never imagined i would ever know this much about about medicine and medical procedures! i never imagined i would have had to learn how to insert N.G. tubes on a nightly basis. i never imagined i would have to learn how to give sub-q injections on a weekly basis. i never imagined that i would become a health activist. i also never imagined i would have meet so many great and wonderful people, that i not only consider my friends, but my family too! – the Crohn’s Colitis Effect
BUT..

because i have crohns disease / ulcerative colitis:

  • i have a backbone. i have a say in my treatment. i have learned what it means to be an advocate for myself and give others the tools required to become their own as well.
  • i am educated. i loved learning about epidemiology in college, looking at the intestinal lining underneath a microscope, memorizing all of the medical terminology. it something i could relate to in a time i didnt relate to much around me. it too all of me to get through 5 years of college, but 2 degrees later, here i am. despite all of the setbacks, IVs, injections, hospitalizations & a surgery my sophomore year.
  • i treat my good days like gold. and max them out when they happen. because i have IBD, i know what a bad day can be.
  • i am a virtual road map to the nearest restroom at all times.
  • i have learned to treasure [uninterrupted] sleep. as a kid, i never slept. as an adult, i envy others who are able to sleep “regularly” in an unhealthy way.
  • i believe in healing power of pet therapy.
  • im motivated by the smallest challenges in my everyday life.
  • i smile more. generally, im 300% happier after accepting struggles and claiming small victories that may just be getting making it up a set of stairs successfully with no injuries!
  • i laugh. whats not funny about a fart? maybe a wet one..
  • setbacks can be a slingshot forward.
  • i have the ability to help others struggling with IBD around the world.
  • i hold family tighter.
  • i matured faster than those around me in certain aspects of my life.  i will likely be a child for the rest of my life in many ways, as sometimes it helps to cope living freely, lightly and with child-like humor. sometimes, its fun to be a kid and feel disease-free again.
  • i love my body more today than i did yesterday. i see scars and stretch marks and reflect on the milestones that have made up my life.
  • i have to be selfish at times, because i know no one else will do that for me. i have to advocate for myself to ensure my voice is heard whether it has to do with my course of treatment or educating others when they ask me about IBD.
  • i have twice the amount of determination and perseverance to  juggle my daily workload, to complete a half-marathon, to beat my disease.
truth be told, before i was diagnosed with anything, i didnt have much perspective on life. ive been through some unfortunate setbacks living with autoimmune disease, but none that have killed me! i do believe that i will overcome this disease entirely one day. and im not sure i would whole-heartedly believe that without the people who have helped me get here. it is a heavy load those who live with autoimmune diseases carry, but i dont believe i cant handle it. there are certainly days i wish i didnt have to, but in perspective, no matter how many bad days you have, the good ones still outweigh them all. before i had crohns or colitis, i had a wonderful life but i wasnt living it, not fully anyway.
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?

WEGO Health Activist Awards

20131217-192815.jpgWEGO Health Activist Awards

im a firm believer in…. standing up for what you believe in! behind every choice in your life should stand someone who has good moral, best interest for all parties involved & the ability to help support others by supporting the small goals towards one common goal. thats teamwork, right?

my support team doesnt just involve friends and family. my support group lives 25,000 miles away. my support group lives online through social media, through magazines we produce, through professional communities and national non-profits. many people make up my support team of IBD specialists – i say specialists in a unique way. we may not all be doctors, but we have something better than doctors will ever be able to tell us; personal experience. we have been operated on, tested on, criticized for not looking sick enough & criticized for the way we look when we are sick. something else doctors will never be able to tell us is how to deal with these things when they happen to us.

there are many people that have helped me on me journey to become who i am today. i am eternally grateful for the wisdom and advice they have given me throughout the years. it hasnt always been easy to hear, read and experience, but it has helped me cope. it has helped me come to terms with my diagnosis and live a better quality of life. most importantly, it has taught me to fight.. for myself, for others and for awareness.  many people look at social media like it is a negative thing, but i have had such an amazing experience connecting with others like myself, that i couldnt imagine a life without it. communicating with others who live with IBD and chronic disease, raising awareness to diseases like ours, finding funds to study and research towards a cure and… drumroll… advocate for others!!

im proud of who i have grown to be and that speaks volumes. ive fought like hell to be where i am today and have many people to thank for that.

i ask that you nominate your health activist heroes & the people who have helped mold you into a better person, advocate & patient. maybe you dont have a disease but you follow someone elses journey or blog through social media (instagram, twitter, facebook, website/blog)… i ask that you dig deep in your heart and thank them with a nomination like i have. take the time to browse around some of the blogs that may be related to mine & you will find some amazing, courageous and crazy, fun people who find ways to fight for others by providing them support and relief that things will be ok.

awards.wegohealth.com/   – nominate your favorite activist here!

http://instagram.com/jojocrabb https://www.facebook.com/jojocrabb  https://twitter.com/kjocrabb http://www.linkedin.com/pub/kelly-crabb/71/bb2/a44/