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
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
an ode to the commode (& other shitty diseases):
its a shitty disease, this thing called “Crohns”
put to a movie title, it would be “king of thrones”
theres a few secrets that some like to keep hidden,
but since im a rebel, i like doing the forbidden
there are too many puns,
besides “it gives me the runs”
“what CAN you eat?” its simple really..
no popcorn, no butter, no spicy chili,
no milk, no red meat, no seeds and no nuts
no broccoli, no beans or id have no guts.
“how do you poop?”
the snake poop, the crippler, the incredible hulk,
the splash back, houdini, the second wave bulk.
theres the spinal tap, the drunk poop & lincoln log turds,
then the one you rethink having cheese curds.
greasin’ the bowl, growin’ a tail,
the times you cant wait to get out & inhale.
its too hot in this room, get me out now,
sixteen times a day, i scream & shout OWWWW.
i grunt, i groan, i scream & i yell
if theres one thing im good at it’s IBD hell.
the bloop, clank however you put it,
a dump is a dump, a shit is a shit.
with the amount that i spend on soft toilet paper,
WELL…….there is no rhyme to this one. im just an expert.
at the age of 26, i cant trust a fart
bring a spare set of panties, cause ive mastered the art.
im an old soul, trapped in an old body,
thanks to medical debt, retirement wont include a Maserati.
creaky joints, spare clothes & osteoporosis,
the joys of annual tests for Tuberculosis!
laxatives have become a part of my norm,
sometimes if im lucky, my poop has great form!
you may have left me with medical debt,
and sometimes depressed, since theres no cure. yet.
“what do you eat?!”.. a familiar phrase..
the others? oh, i could go on for days.
misconceptions of “invisible illness”, ive heard them all.
“youre to fat, youre too skinny”, too many to recall.
the most annoying one?
“i’ve got your cure-all”
“stand upside down, eat tree bark, take these supplements, youll be fine”
while i roll my eyes, envisioning bottomless wine.
should my poop be this color? am i sicker than i think?
all of these strange symptoms just make me want to drink.
porcelain throne, john, loo.. i see you too often, in my humble conclusion.
look beyond my smile, often its illusion.
im exhausted, im tired, i want to throw in the towel.
some days i do.. because fuck my small bowel!
my buttholes itchy
im feeling bitchy.
in many ways, IBD deserves no praise..
but its strangely blessed me in unexpected ways…
many years ago before i graduated college, i remember sitting down and filling out some things that i would love to do before i “kick the bucket”. but how would your life be summarized if those opportunities never came knocking.. if your life ended today? does a thrilling event like bungee-jumping or skydiving really make you a better person? are you living for today?
many of us focus too much about what our futures will be as opposed to living for the moment. im guilty of it! so how can we live more in the moment?
1) take time to appreciate the small things that people do for one another.
too often we take for granted the small gesture our friends and coworkers do for one another. how often are we recognizing each other and saying “thank you”?? not only does it make you feel as though your small existence matters in the large scheme of things, but makes you feel appreciated! who doesnt like knowing they are appreciated for a job well done? how often do you tell your friends how much you appreciate their friendship? or a coworkers support? if youre lucky enough, you may have a coworker who is a great friend! tell them. if you see someone do something nice for someone else please do one of two things: A) give them recognition. there is nothing worse than extending your heart and going out of your way to do something kind for someone and have them blow you off. B) pass it on. negative attitudes are contagious, but so are positive ones! maybe it’s a grand gesture of the car in front of you paying for your coffee & you doing the same for the next car.. maybe its making a meal for someone who has been going through a difficult time. let them know you are there for support. maybe its a please & thank you to someone you normally dont go out of your way to talk to. appreciate the small things.
2) leave the phone alone.
theres no greater distraction at our disposal in our world today than what technology offers. there is also nothing ruder than to be at a dinner with a friend and be glued to facebook the whole time. and foursquare will survive if you dont check in to every place you go. the only thing you show others when youre on the phone or browsing the web is that you have no respect for them or their time and obviously you think you have somewhere better to be. dont be rude! put it on silent or leave it at home.
3) do one thing at a time; slowly & attentively.
if you’re not giving your undivided attention to one task at a time, you’ll likely lose interest in it quickly and not do the job very well. to im way guilty of this as i have a job that requires me to have attention on many things at once. try not to get distracted. don’t feel rude if you need to tell someone “id like to give this my full attention later, are you willing to find time to talk with me later so i can complete this task before we tackle this issue?” delegate or do less. split up the chores and the work you put upon yourself. it may be harder for a person that has the “if you want something done, you must do it yourself” attitude, but if we take some of the pressure off ourselves and help each other with the load, we’ll realize life is easier in teams. its so easy to get distracted in our world, but if we do things slow and thorough, we will be more pleased with our results.
4) keep up physical appearance.
whether it be your working space or wearing nice clothes to work, keep things organized. there is nothing worse than someone coming in for an interview looking disheveled and upkept. if they dont care about their own physical appearance, they may not care about much. if you keep your workspace around you cleaned up, you will be more organized emotionally.
at the end of the day, its so easy to unwind and watch the first thing that pops up on tv or to dive into social media and see what everyone else is up to. maybe its in prayer, maybe its writing, maybe its listening to music. how often are we taking the time to ourselves and reflecting on our own lives?
6) help others help themselves.
much like #1 mentioned above, one of the most important things we can do for one another is be there. offer encouragement.. after all, you may be the only one to provide them that boost of self-esteem. if you see someone struggling with something such as their self-esteem, encourage them with a little bit of praise. a compliment may be the first step. be attentive to others and make them aware youre watching and listening by giving them some positive feedback. “you really seem to have a lot of patience, something i’m trying to work on lately. what do you suggest i do about ___?” is an open conversation starter. others will feel your genuine concern and care by you wanting them to know their opinion. we all want to know we have the support of others and this is a great way to let someone they have yours.
7) be silly.
enjoy life! if i didnt have humor in my life living with the type of illness i had, id be lost – physically, mentally, emotionally. its important that were able to unwind in a healthy way and what better than humor? being able to laugh at yourself is important. i probably fall up or down a set of stairs at least twice a day. my big thing is also walking in to glass doors. there isnt a store in green bay that i havent literally walked in to.. being able to laugh at myself makes life a whole lot easier. breathe.. if you arent laughing at yourself, everyone else is without you!