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
its been nearly 5 months since ive wrote. ive started a few, but became quickly tired. honestly, i had good intent to finish.. but the handful of times i actually had time to sit down, i found myself rereading things i didnt feel anymore.
i have had ups & down, but this is the first March in a few years i didnt spend any weeks in the hospital. for this, i am extremely grateful. i DID spend a lot of time at different specialists & unfortunately i will be adding more members to my care team, but i believe this is the right direction. im pretty sure if us patients collected badges for every doctor visit we had, we would need multiple cub/girl scout uniforms to hold the number of badges we collected.
ive been having a rough go with my body adjusting to meds. ive tried acupuncture that has helped with nausea & vomiting, but found that i was spending more time arranging appointments, driving as well as the cost of the appointments.. it helped a lot, but also really, really irritated the neuropathy in my body & i found myself expending way too much energy trying to heal from my appts.
my body is tired & my eyes are misty. i feel weary about where my regimen will go in the future. my infusions are faring my stomach well for now, but i dont feel like i am where “should” be. i find myself recovering from meds my body needs much more than i am healing & finding a happy medium. what would be simple infections to most people have plagued my winter.
im excited for more projects than i can count on one hand. being invited to patient advocacy summits, seminars & being an ambassador for multiple non-profits i truly enjoy working with that make a great difference in the care that patients receive. im humbled to be asked to represent part of the patient community, and being able to share these projects so that this audience is able to participate in makes things worth the sweat! teamwork makes the dream work.
i look forward to writing more. i have been saving pennies purchase a nice computer that i can rely on to share valuable information.
what was the first thing you noticed about this picture?
1 week worth of meds? 1 years worth of medical records & insurance claims?
this photo captures the meds i take on a weekly basis. i should clarify not all of these are medications for crohns disease, but surely 75% of them are to counteract the side-effects of the medications that keep me alive. that keep me living. that keep me smiling.
there are many risks to the medications we take & ive experienced some very scary ones, some that have left damage & others that have made other drugs unsuitable for me to inject now.. but a life of Remission is worth the risk & that is something i will always believe until we celebrate a cure or a vaccine that could potentially prevent IBD or eliminate carrier risk.
at 17, entering college, i took upwards of 35 pills a day (12 just being pentasa). after months of taking so many pills a day, the sensation of putting any pill in my mouth made me puke almost every time. there were days i simply couldnt hold down the pills because it was just too much.
time is a blur, but within the next year i would return home every 4-6 weeks & receive #remicade infusions. my mom accompanied me to nearly every single one. soon the #infusion center felt like home & i would return on my own. & soon, i made my parents stop driving 8 hours on the weekends i needed infusions and asked if i was able to receive them in the hospital across the street from my dorm room. lucky for me, i did not have class on fridays, so i could wake up in my sweatpants, put on my jacket & walk across the street – on good days, i would study & the bad, i would try desperately to sleep despite the awful sounds i would hear, as i was across from the ER. years have come & gone, infusions turned into injections, then eventually back into infusions.
this photo captures many things, but the thing i want you to see is a smile. its a pretty simple thing to a lot of people – a smile in a picture. but pairing it with a representation of only a weeks worth of meds being chronically ill for over 10 years? to a person that gets it, they know how hard smiles can be to come by.
the 16 year old girl inside of me is roaring with jealously; the 17 yr old girl who had a terribly swollen face in her senior pictures is screaming. the 18 yr old girl with little self-esteem entering a new relationship wants to strange me. and still to this day, living as a 27 year old single woman with Inflammatory Bowel Disease, life is still a strange & terrifying thing to me. its still full of pill boxes, infusions, injections, hydration powders, nutrition supplements, sharps containers & pillboxes with timers built in…
but NOW, there is a smile. it might have taken 10,000 frowns & 10,000 other smile to get here, but im happy now. 10 years have passed – way more than 10 colonoscopies too. but in my journey, ive met amazing people whom i cannot put a numerical value on, only sentimental. ive met new friends that have had eerily similar diagnoses, received hand-written letters from across the globe & even ran a 1/2 marathon with Team Challenge Wisconsin and along the way, passed by & met/ran with members of teams all around the US who i still keep in contact with.
i have met new people, found peace with my #diagnosis & have even managed to change some lives along the way – even if only for a day. some people in the #IBDcommunity dont agree with the sense of humor i have & to them i say, thats okay! i advocate in different ways than others but doesnt make me any less credible & shouldnt make me any less happy.. and certainly shouldnt make me hold back on going after my dreams. im this way because i want to be & 10 years ago, i would have never had the emotional strength to go through scopes, hospitalizations, #infusions, injections & surgeries that required me to be in the most humiliating “jackknife” position. humor has always been my coping mechanism & if that means making fun of myself without the risk of hurting someone, i will.
im thankful to have been blessed with this curse. i know this life is not what my parents had intended for me, and certainly not what i envisioned it to be. but the truth is, i am beautiful because of it. all of the bad shit my disease has given me, its given me SO much more than i have ever deserved.
despite living with #IBD, i smile.
#IBDselfie #IBDawarenessweek #inflammatoryboweldisease #crohnsandcolitisawareness #chronicillness #CCFA #crohnsdisease #ulcerativecolitis #crohns #colitis #autoimmunedisease #autoimmune #IBDfamily #CCFA #teamchallenge #myIBD #1in200 #iamjustone #purpleproject
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 asmore 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
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.