in the midst of uncertainty

“as your faith is strengthened, you will find that there is no longer the need to have a sense of control, that things will flow as they will, and that you will flow with them, to your great delight and benefit” – emmanuel teney

one of the first things you have to learn about living with a disease is learning to accept that you have no control of what happens to us in some situations, but we have full control over our attitude and how we decide to react. though i may be in the middle of an unpredictable disease, by taking responsibility and doing all i can to control the rest of my body and what i do with it, i am taking control. running and training is my way of controlling what i can, even when im literally running from a treadmill to a bathroom..

i feel pretty in limbo this week. after having so much anxiety to see which direction my new treatment will take me, ive developed Google-itis & have done entirely too much research on the 2 drugs that will hopefully get me  where i need to be.  everything ive google so far has been negative & unfortunately, there are a lot of patients that put their horror stories online for the world to read.  even more unfortunate, there is a correlation when drugs start to work.. there is a tendency for patients to stop using online support groups once their drugs start working. most of the time, they dont go back to the online forums and tell them their success, since they no longer need the support or validation of others.

so i guess the theme of the week is going with the flow, something i really continue to learn with this disease. many years since living with this disease, my time of the day i seem to really struggle with is morning shortly after waking up. when you wake up, so does your immune system – much like my brain, my stomach does not like mornings either! lately though, ive been having increased pain & symptoms that have been extremely disruptive to my sleep. learning to go with the flow on little sleep has been difficult. i honestly cannot wait to see my gastro.. (who says that?!)

in the meantime, a lot of deep breaths will be taken and prayers will be said.

xox,

kelly

ears of your life are the ones in which you decide your problems are your own. You do not blame them on your mother, the ecology, or the president. You realize that you control your own destiny
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how ive grown.. (2013 IBD awareness week edition)

ask me.

ask me.

how can i count the ways?

i started this journey as a 17 year old girl. i thought i was invincible then. truth is, i

was just really naive. though ive always been fascinated by the human body & had a guilty pleasure growing up watching creepy, gory shows like CSI, my love of the human body grew the day i learned i also had ulcerative colitis, in addition to my initial diagnosis of crohns disease. devastated, i made a pledge to myself that i would educate myself and do what it took to have control over the parts of my life i could control. though it was a lengthy process, im proud of the person i am today. that statement in itself is something i never thought id be able to say. even before my diagnosis, i had terrible self-image; something im also proud to say today is much better.

not only have i grown to accept myself in the eyes of myself, i learned to educate others about IBD. in this turn of event, my passion for becoming involved with non-profits grew. i became involved with CCFA, BloodCenter of WI & also some national non-profits that tied into the work i was doing at the time. its easy for anybody working with non-profits to fall in love with what they do and later on down the road in my career, i realized its what i was meant to do. so, i began sharing my story. by the grace of God, i was asked to share this story in front of what seemed like a million people at Miller Park for a Take Steps event in 2011. standing in front of such a large crowd of people so accepting of what IBD is & honestly interested in hearing what i had to say was nothing short of inspiring, motivating & terrifying! i knew if i could do this, i could do so much more than what i thought i was capable of. so, i began to tell others. many of who had a family member with crohns or colitis but didnt know all too much about it. i learned to expect all sorts of reactions. (i still laugh at some facial expressions to this day). it wasnt always the easiest to explain a disease that heavily involves ones bowel movements & heck, it may never be easy, but it does get a little better every day. and honestly, there can be a lot of good conversation that stems from it. much of physical disease involves emotional well-being too. so, its nice to know that someone genuinely wants to know about you & learn about how youre able to overcome so many struggles. when i talk to you about my disease, it means im comfortable with you and that.is.big. 17 year old kelly would not be caught dead in a fishermans net talking about poop or living with IBD.

so yes, im proud to have GUTS. im not sorry if you find my facebook, instagram or twitter posts annoying. not only are they my form of therapy to occasionally vent into cyberspace, it allows me to connect with others in the same situation as me. i used to struggle with getting out of bed in the morning. & that was when i was 20! ..at the prime age you should be enjoying college & forming life-long relationships. immature & inexperienced, i thought my life was over when id wake up & see prednisone cheeks – until i learned that waking up morning after morning was a blessing!! i embraced who i was, became comfortable with time in telling people about my IBD after becoming educated about it myself. i lived in denial the first few years post-diagnosis and thats no ones fault but my own. not saying you can learn to deal overnight, but living with disease is MUCH easier than living in denial with disease. im thankful for my fellow IBD blogger, Mel, who taught me the phrase “coming out of the bathroom”. its true.  i spent too many years living in denial that robbed me of a few good youthful years (sick or not). i felt bad for myself, became depressed and hid in my apartment in fear society would eat me alive. i settled for relationships that were emotionally & physically bad for me. i have crohns, not cooties. im not contagious. im not sorry that i came around & finally found the positives and now embrace the person i am and deserve good things in life. im a person first, who has a condition.  it seems the people who most often roll their eyes are the ones who know the least. as a patient who will likely live with these diseases the rest of my life, its my responsibility to help educate our community to help accept us, so we learn to accept ourselves. i wont apologize for being comfortable in my own skin, using my backbone & advocating for a cause i truly believe in. how much have i changed? let me count the ways..

xox