patience really is a virtue.

this amazing woman… I’m speechless. This is what a hero looks like: no cape, no badge, no Gotham city bat signal. This woman has handled her journey with grace, dignity & resilience. I love you Brooke. You are a reason I will turn #purpleproject into a long term project. Xoxo.

Fierce and Flared

Did I blink and this was over? I officially have NO ostomy. I am speechless. It’s great, better than you could ever imagine. My life is back, my freedom is back, my family’s freedom is back and all of that is priceless.

As I lay in my hospital bed, for hopefully the last time for a long time, I can’t help but to think about how fast this all went. Do you want to know why I feel like it went so fast? Because I had a positive attitude towards all of it for the majority of the time. Am I perfect? No, far from it. Have I handled this situation with grace and positivity? I can tell you that I have given it my best effort, but there have been break downs and that is ok.  I went through a lot of things to fix those negative thoughts and actions. It was…

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before i got sick

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 as more 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
BUT..

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.
truth be told, before i was diagnosed with anything, i didnt have much perspective on life. ive been through some unfortunate setbacks living with autoimmune disease, but none that have killed me! i do believe that i will overcome this disease entirely one day. and im not sure i would whole-heartedly believe that without the people who have helped me get here. it is a heavy load those who live with autoimmune diseases carry, but i dont believe i cant handle it. there are certainly days i wish i didnt have to, but in perspective, no matter how many bad days you have, the good ones still outweigh them all. before i had crohns or colitis, i had a wonderful life but i wasnt living it, not fully anyway.
dont let my positivity fool you. i have had hardships and struggles in my life with disease. i will not lie; there are days i quit, knowing i can start over fresh the next day. but the things that have been taken away from me due to my disease, have in turn provided me in opportunity; ten fold. friends, networks of support, communities filled with IBD & autoimmune patients just. like. me. who knew?

standstill.

20140213-191509.jpgits been pretty quiet at #purpleproject lately.. i guess i feel as though silence is better than being dishonest. since we’re family, ill let you in on whats been going on (or lack there of) over here..

winter has been hard. what seems like “rest” and quiet for the last month or two.. have actually been quite the opposite.

my pain management since christmas has been at an all-time low. i feel like when my pain is out of control, i have no sense of control of my immune system. little to no energy is produced from my body and getting out of a seated position made me cry in my last flare.

in the first week of january, i experienced the worst fibro(arthritis?) flare up in my hands/body that i have ever had. its never been this bad. i wasnt able to hold a pencil in my right hand. i cried constantly. every nerve ending in my body hurt; i couldnt move any of the joints without coming to tears. i found myself on the floor many times. this lasted for about 3 weeks.

it was during the end of this flare i had an accident. after falling down a set of stairs & waiting a week too long to be checked out, i found i had separated my right shoulder when i hit the bottom. Boom.

i cannot explain to you the sense of helplessness i feel when i start to flare. prescriptions are not helping, other prescriptions are not covered by insurance or cost $256/bottle with insurance. im allergic to most pain meds. its not been a glamorous winter so far. there have been many sleepless nights as of late. some filled with physical pain, some filled with fevers, anxiety & nightmares. but most nights are filled with tears.

my entire right side was affected when i fell, but its been an interesting jan/feb using one hand during a flare. ill let you paint the picture.. ive had a pain in my ass for the past month that seems to only get worse with time (fistula/fissure).  i am in the middle of a not so great flare that has brought me to my knees physically & emotionally. i see my new GI the first week in march. funny how winter has crept up on us so fast, but 2 weeks seems so far away. im miserable. my quality of life is less than stellar living in pain. i dont like what im about to say: its time for injections.

after giving it one last ditch effort last year, i had hopes Humira would give my body a little more mercy than it has before. it seems though, to get worse every time, and will get worse with each time it is stopped. i made the decision with the supervision of a GI, that i would be done with Humira. no more allergic reactions, no more weird infections, no more lung issues. i was free. i cannot express the feeling of leaving a doctors office and hearing the words “youre on a drug hiatus, treat this as a vacation”. it was a terrifying & wonderful experience

i take the good days & i hug them tight. i give all of my energy and soul in to these days, because i know there will be bad ones. its hard to conserve my energy on the good days, because i want to live an honest, open life to the world and give everything i have on those days and more. on my good days, im superwoman living in jeans and a smile. i earn those days & refuse to let them go.

im taking gabapentin. im applying the voltaren 4x day. im praying often. and when im able, i. run. like. hell.

#despite