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
i capitalize Remission for a number of reasons, but the main reason being i see it as a state, a royal majestic state. if you read much of my writing, im sure youre annoyed by my constant writing habit of writing in all under case, with very few exceptions.
as much as i hate to admit it, there is no way around “if”. “if i knew what being in Remission meant.. “if i had enough energy to finish my day as strong as i started it”.. i think every single day, i find myself finishing my “if” quandaries differently. “if” is one word i one delete from the language of chronic illness. its so limiting, so restricting.
many days, Remission to me, means reminding myself of the things im not able to do. and. this. sucks. who wants to be reminded constantly of the things they are unable to do, and even worse, condemn themselves from doing these actions? im my own worst critic. its an awful feeling having to doubt or deny yourself things you deserve to be happy in life.
my daydreams of Remission are vivid.. soft puffy clouds, cats riding unicorns, sparkly ice cream cones floating in the air, mountains of cheese flowing like lava into the streets, dancing orchestras on Fat Tuesday, huskies saying “i love you”, playing dizzybats with old coworkers and havings drinks at the bar winning dart tournaments at Wolskis….. living freely without hesitation.
Remission to me means being able to wake up in the morning and jump out of bed & having the ability of walking out the door with no medications. instead, i pick up my heavy sack off the floor before i leave, knowing i will need at least 3 of the 8 bottles of medication in it before noon.
Remission means no puking, or spending 60% of my days in pain. Remission means food. Remission means being able to be in public and not be disgusted by the smell of other peoples that i cant eat. Remission means no lung issues, chronic rotten infections, days spent hurdled up in bed, or nights spent crying on the bathroom floor. Remission means allowing myself grumpy days that are completely unrelated to my health – & really happy days celebrating my ability to breathe freely. Remission is a sigh a relief. Remission is family, friends & never cancelling plans. Remission is Hope, a Future. Remission is smiles. Remission means normal.
not to much to ask, right?? i know.. i know i should be grateful for the bowels i still do have, but for how often they hardly work (or is it working too hard??) i would appreciate a fresh set of them.
was supposed to have my follow-up to see how my levels are doing since being off Humira. so far the only physical things ive noticed as far as withdrawal from the injection are muscle aches and very sore joints; i can unfortunately tell with how much pain i have been in lately (not localized to one area). its been a long week at work & stress is trying to sneak its way in to my body. i think ive done a pretty good job of finding ways to eliminate most of my stress in healthy ways. i think most of the biological withdrawal will be evident in the next few months to come as far as increased stomach pains & more frequent trips to the bathroom, but for now, i want need to remain off biologics & enjoy the time im able to have without them in my system. ive only been off of them for a little over a month. even in just this short period of time my immune system is better, the psoriasis caused by the injection is lessening (but still evident), i have had no flu-like symptoms and my overall spirit has been lifted since i dont feel weighed down by an injection every other week.
ive been researching the two types of chemotherapy my GI would like to try out. 6mp & Methotrexate – both very risky drugs. Humira turned out to be a scary drug for me, but did not know this when i first started. unknown risks of long-term side effects.. obviously, anytime you start a new medication, there are risks, but these arent your typical run-of-the-mill side effects. these medications used to treat IBD are scary. these 2 specific therapies are used to treat different types of cancer including leukemia – thus proving how potent they can be. its first side effect listed is obviously well-known, vomiting. next comes nausea, hair loss, easy bruising/bleeding (which is a huge concern in IBD patients; which is why blood tests are so frequent from possible worsened anemia), dizziness/fainting & joint pain/swelling. long term side effects include liver & lung damage. i even read that one of these drugs is/was used for abortions in the past (!). there are many things to consider when choosing these drugs and which will prove to have more of a positive effect on ones body than worsening one’s health. how will these drugs impact my life? as much as i dont feel well since my colonoscopy, at what length do we have to go to achieve maintenance for my symptoms?
so why chemotherapy? for many patients that need to remain on steroids in order to stay out of a terrible cyclic flare, or have a severe flare after stopping the use of steroids, Methotrexate & Mercaptopurine are a way to achieve the same results without chronic steroid use. since i fall into the category of chronic steroid use and my body has seen an extent of long-term damage from them, its time to try it. i guess ill have the next week to continue my research and try to remain neutral regarding what i find. most of the articles that pop up are so negative, so im thankful for some of the online communities im a part of to help find the positive & put it into perspective, how these meds have been successful for them. i dont know what my future has in store for me, but im determined that i will find something that will work for me. the unknown is a really scary thing to me; im not great with change. researching and finding only negative response and feedback sucks to be honest. having a disease with no cure sucks.
here is more information on why treating IBD with chemotherapy has been effective in many patients:
http://www.med.unc.edu/gi/specialties/ibd/images/treatment-of-crohns/Methotrexate.pdf (VERY helpful website)