perception & icebergs.

(for a better reading experience, pop this blog up on your desk/laptop & grab a snack & come on back.. cause i’m bout to spit some truth.)

in my next 13 years, i hope that the man i will someday choose to love will see and accept me not for my curse, but as a blessing. i don’t want to be seen as my illness & i’ve also learned that i do not need verbal validation how sick i am or have been, yet pretend to be a normal functioning human all at the same time. i want to be seen as a wife, with a compassion for serving others, with kids at my dinner table, in a house that i own, with a dog sitting next to my front porch swing. i want to cross a thousand finish lines without raising money to find a cure for a disease that will be in full Remission, with hopes of being so much closer to a better quality of life with this illness. my hope is that in my lifetime, i will see better therapies, better care & more compassion to those living with illness – both visible and not so visible. i want to be healthy enough to take care of my family, be able to conceive children if God has this in His plan for me and i want my life to be more meaningful, grateful and full of.. well, life.

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something very beautiful happens to people when their world has fallen apart: a humility, a nobility, a higher intelligence emerges at just the point when our knees hit the floor. – marianne williamson

for information regarding extraintestinal manifestions, visit:
Very Well -What Are the Extra-Intestinal Complications of Crohn’s Disease?

http://online.ccfa.org/site/DocServer/Kim.pdf?docID=25687 

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
Read more at http://www.brainyquote.com/quotes/quotes/a/albertelli122035.html#FdWcikLGlrjTFLaQ.99