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

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

27 things i intend to do before turning 27

sometimes its the simplest things that make us happy….

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1. continue to be as happy as i was at age 26 (what a good year!)

2. learn more about sharks. because i can.

3. find a diet regimen that works well with my IBD (a challenge, since your body doesnt always except the same things)

4. go on more dates.

5. become a damn good thrift shopper.

6. build an even more amazing team at work.

7. maintain a healthy, consistent weight (even while being on steroids).

8. play “future days” on the piano by heart.

9. rehab my knee to be the strongest its ever been (including before surgery)

10. have mom & dad both guest blog.

11. find a hobby i am good at.

12. partner up with BloodCenter of WI for a Green Bay blood drive.

13.1 = run a half marathon with Team Challenge Wisconsin.

14. give support groups another chance.

15. become a ‘big sister’.

16. pay off a chunk of my medical debt.

17. actually read the magazines i get.

18. become more extroverted.

19. learn how to finally perfectly poach an egg.

20. pray more.

21. grow my own vegetables.

22. learn to french braid.

23. be more creative.

24. write more snail mail.

25. go paleo for 1 month.

26. golf.

27. develop #purpleproject into a long-term plan… 🙂

so i ran a half marathon..

i DID it!

with everything going on recently with my health and some of the tests ive had done over the past month or so, there’s been little time left for me to go out and just enjoy a good run. i haven’t felt good, ive had zero energy and had let myself go quite a bit on my regular routines overall day to day. im a creature of habit, so when life throws a curve ball at me, it’s just as hard for me to try to change my routine as it is to initially develop one.

this past weekend i had the opportunity to do a “virtual race” for Team Challenge, an endurance group organized through the Crohn’s & Colitis Foundation of America that focuses on fundraising while training for various race events.  a group im affiliated on facebook sent an opportunity a little around a month ago to run a “virtual run” with them so i took the opportunity & ran with it 😉

while i may not have been able to join my friends in the “Rock n Roll” Vegas on the strip to run the half with Team Challenge, i’m glad i was given the opportunity to do it with them in heart. so, using Charity Miles, i ran myself to the point of exhaustion.  i havent been on a long run in ages & when i had, most time ive been stopping to do intervals or just running slow and steady.  i did mine on the treadmill & think because of my adrenaline pumping and my end goal in site, my first Team Challenge medal, i had it in me.  i had an awesome 10k – 58 minutes!! holy cats that is great for me! my first 10k race in chicago i had gotten just above an hour.  i finally got under! (probably due to the fact where i put the treadmill at a high pace and challenged myself more instead of changing up speed constantly on the roads i regularly run on daily).  it felt great – until mile 8.  i kept telling myself – just run the rest like you’re running a 5k.. all it’s going to take is a simple 5k.  i dont know how i did it, but i did.  just around the 2 1/2 hr mark.

it was not so comical trying to walk up and down the steps the next two days.. but SO worth it. i truly needed something like this to turn my spirits around since ive been feeling pretty crummy. im already looking forward to my next real road race.

13.1 & done!