tonsillectomies, adenoidectomies & suppositories! hooray!

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

april showers

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.

holidays have passed, awareness weeks, as well as seasons & unfortunately, some of our loved ones as well. it was a long winter, but i know good things are in store.

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.

my heart looks forward to so many things: racing, fundraising, being a patient advocate, meeting so many of the friends that have changed my life in amazing ways & traveling. also, shark week.

life is better in color. <3

life is better in color. ❤

why i smile.

what was the first thing you noticed about this picture?

what did you notice first?

what did you notice first?

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.

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#IBDselfie #IBDawarenessweek #inflammatoryboweldisease #crohnsandcolitisawareness #chronicillness #CCFA #crohnsdisease #ulcerativecolitis #crohns #colitis #autoimmunedisease #autoimmune #IBDfamily #CCFA #teamchallenge #myIBD #1in200 #iamjustone #purpleproject

new demons to battle

WOOF. what do you say when youre angry, sad, confused & have absolutely zero energy to hold any of the above emotions at all?

im glad i waited a few days to update, because there have definitely been some angry moments of reflection. superman juic

its no secret i havent been feeling well at all lately. i wake up in the middle of the night & start to blow chunks all over. im uncomfortable in any sleeping position. the pain in my body combined with the wounds i have going up in to my colon have put a huge dent in my sleep. im talking maybe an hr or 2 a night. it literally feels like my butt has teeth & it is chewing shards of glass.

after an exam on tuesday, the doctor got me going on 2 forms of chemotherapy that will hopefully aid in the healing of the significant issues ive been having with a fistula & a fissure. after hearing several sighs an “oh my gosh” and a “we need to repair that right now” i felt less than thrilled about what i may hear. he did tell me i need to have it repaired, but how much depended on how my body decides to respond to the remicade. in order to avoid complicated surgery, i need to start them both immediately to avoid further damage & hopefully stop it from spreading to the greater part of my colon. we will know within 6 weeks if they are working. i have a good feeling about this doctor; he was kind, he did his research about my case & expressed genuine concern to meeting my needs. i truly feel as if my journey to remission is so close.

in an effort to save the part above my rectum that has not been damaged yet, i started Remicade (today) again in addition to mercaptopurine (6-mp). i will know within 6 weeks if this fixes my fissure & fistula.

he did say we are taking a chance by starting remicade (infliximab) over again, since it has failed me once. but in the 3-4 years i was on it, it was probably the closest to remission i had experienced since i was diagnosed. to spare me some costs, were trying to avoid more genetic blood tests, since they are NOT covered by insurance & usually run upwards of $1000 each. i also risk the chance of having a severe reaction, after stopping it for so many years & developing anti-bodies to it.. but if i dont start NOW, i will lose part or most of my rectum and colon. (now you see why i advocate?) by the time we would receive the general genetic markers & anti-body tests, the damage may already progress, so.. were risking it. i need the medications & i need them now. i started the oral pill immediately on wednesday & had my first loading dose of the infusion today and will have another in 2 weeks.

for now, im on a liquid diet in an effort to try and not have any output, as to no irritate the area more than it is already. i am hungry, and weak and im tired. i came home from my infusion and i slept like a rock for a solid half hour.

im not sure i have more to say than that.. now its a waiting game.  im angry, i have no energy, i dont sleep; even sitting down it feels like im getting a rectal exam, but with a cactus instead fingers. i cant run – while my team has just begun practice last week, i can barely even move without losing an alarming amount of blood. ive been puking on & off for weeks & have at least 8 or 9 mouth ulcers. knowing i have 6 more weeks of waiting and feeling like this makes me mentally drained. i found myself at my desk on wednesday welling up in tears and i had not even been thinking about it. by the time i made it to the bathroom, i was sobbing. it hit me like a ton of bricks that i may lose part or all of my rectum for something that seemed so minute not long ago.

on a mission for remission!