throwback thursday – 13th diagnosis anniversary.

13 years ago today i received 3 letters that would both alter my path on life and change my image of what i thought the word “sick” meant.

this post will be pictures. & only pictures. because i want each and every person that comes across this to see me as a person first, living with an illness secondary.

ive decided to share pictures only from a year or two after my diagnosis on, because those pictures are a great and terrible beauty. and also, ive lost them. (a blessing, really).

the pictures im sharing now, are either immediately before, during or after hospital stays – keep in mind, this is over the span of 13 years. some of these pictures, ive never shared with anyone. a picture’s worth a thousand words, right?

i turned 30 this week. my Crohn’s turned 13. 13 years of flares. 13 years of infusions, injections, transfusions, pills, dollars, tears, friends, jobs. 13 years of advocacy.

ive never seen Remission. 13 years is far too long.

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want to dedicate $30 to my next endurance event to celebrate 13? click here to help us find a cure,..so that one day, ill be able to cross a finish line with better quality of life, better medications and treatments and hopefully, one day a cure.

#onamissiontoRemission
#purpleproject

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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 

thank you for being patient with me

to my friends, family & coworkers,

“thank you” – a two-word phrase that simply isnt used enough. & sometimes, it just doesn’t do justice to what someone or a group of people have done for you.

the past year hasn’t gone how i imagined it would have – after speaking at length with an old friend tonight, i found myself saying out loud what ive thought many times over in the past 12-ish years.. “chronic life means a life of the most unexpected things at the most unexpected times & sometimes this means reliving these moments over & over again”.

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ive struggled in some form since ive had my tonsils removed in June – just not able to catch a break with my immune system. one infection after another, some viral, some bacteria & then christmas rolled around & obstruction then major flare. it has been a very hard time going to bed, knowing there will be little sleep, if any – only to be woken up at 3am starting all over.

many “simple” infections that most folks get leave their bodies within a few days or a week & for me, they seem to last weeks. i get dehydrated easy, sick very easily & no matter how hard i try to control my environment, i end up receiving infusions or going to urgent cares & ERs because my meds are just not cutting it anymore.

much of the past 6 months, i have struggled internally with things that are going on with my body that i simply have no control of. i have been emotional, i have been crabby, i have avoided friends & family have been unfairly rude or mean to them at no fault of theirs. even during these emotions, i dont know how to express myself other than short-tempered, anger or mostly, silence. i have cried a lot in my car & the hardest for me – after an extended period of time bottling things in, i break down in front of others.

and then there is guilt. for MANY reasons – i havent been able to work full-time because of my Crohn’s & other diagnoses that have made things worse. i feel like a failure in much of my life lately – friend, sister, daughter, coworker, aunt. & id give anything to have my “norm” back… even if it means living the rest of my life with this disease, but on a level that i could at least have some type of control. because honestly.. im not sure why my “new normal” is yet – and that could change at any given moment with chronic illness. to my coworkers & staff: thank you for banding together & bring such an amazing team. please dont think i dont recognize and see (even when im not there) all of the things you have done not in your job description to help out when i have been gone. the texts you send, the patience you show me & the kindness & compassion you show to others is exactly why i want to serve others in this role. my goal for Remission is not only for my own health, but to be the best leader for you. thank you for your patience & thank you for doing an overwhelming amount of work during my times of absence, hospitalizations & treatments. nothing in the world can repay you acts of kindness, but i hope a Thank You is a good way to start.
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ive talked a lot about “patience” lately – the irony of this? ive lacked this quite a bit. i know some parts of this particular blog post are vague, but in time i will provide more information & answer questions to the best of my capability…. which leads me to this:

Thank You.

Thank you for your patience, the love you have shown me & the “thinking of you” texts, cards & smiles you give when you’re not sure what to say. i never want to make you uncomfortable, but i realize that some people dont know what to say (who does, really?) and that does not give me grounds to become angry or short-tempered aka – lost my shit quickly. its HARD for me to apologize sometimes, especially when i dont realize how ive acted because others dont understand my illness.. sometimes because we’re blood, i think my family should automatically understand me, remember what i can & cant eat or understand why i wouldnt want to sit at a dinner table & watch everyone else eat when i cant eat any of it. YES, i want to hear about your day, NO, im not trying to be selfish & have no interest about table talk, but im uncomfortable with it and find it hard to verbalize that i dont enjoy it. its not being selfish, its preventing me from breaking down crying because its another reminder that all i want to do is eat delicious food, but cant. thank you for giving me space when you can tell im in “a mood” – you may not know why (physical pain, emotional pain).. but since you know im an introvert, deal & cope in unique ways, youve come to learn i dont handle things as you, or most people would. thank you for your patience, recognizing my lack of it, but loving me anyway.

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it’s obvious that ive struggled – the past few months ive been short, quiet, even more introverted than normal & physically exhausted. i know that the ones who surround me most see this & have really respected my boundaries & have been great about not commenting on my appearance – how tired & anemic i look, my slow pace of walking, my stature & the way ive carried myself. thank you for not making comments & making me feel more uncomfortable. silence is so much better, for my healing, than telling me things i can visibly see in my reflection. thank you for your patience & not telling me i look tired, rough or sad. instead, this week at work on Monday i was greeted with a genuine “you look so great today, you look put together & sparkly” – i cant tell you how much something so little can affect someone. (i hope you know who you are, because you have that tendency to make everyone else around you smile, as well).

bottom line: living with chronic illness is hard, but when life blesses you with people who surround you with love, understanding & patience… youve simply hit gold.

to the ones reading this, thank you for being patient with me, thank you for the extra mounds of work you have put in despite all of your other tasks & thank you for reminding me that i am surrounded by amazing people, going through their own difficult times.

to all that have stayed with me supported me through the most difficult of times, thank you for your patience, as i continue to go through treatments & tests to rule out future diagnoses & find answers to get me back to “me again”.

kel

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