was all this for nothing?

20131216-204808.jpggaining trust with me is hard. gaining trust with me & sticking your phalanges up in my icky part business is a whole nother level of trust.

though i knew it may be coming, we were told today our work would be changing insurances…. (i suppose this is good news, being that last week, we were told it may not be offered at all). what does this mean for me? starting over.  i find myself starting to cry writing this. after all of the scopes & scans and more xrays tomorrow & lab work and GI visits ive had over the past three months (GI appt every 3 weeks). tonight, i cannot help but think… was this all for nothing?

i started back up at Aurora hospital 3 months ago after changing from doctor(s) in milwaukee the past 5 years. Aurora will always be the place i call home. the place that saved my life & the place that gave me a second chance to live my life for the better.. it gave meaning and purpose to my life.

im terrified to change hospitals. lets be honest…. im terrible with change. i put off establishing a GI in milwaukee until i had to be hospitalized for a week. i had bad experience with many doctors at several different well-known medical facilities down there, even more the reason i hate this change.

not only do i lose my GI/go-to hospital, i also lose my primary care physician, whom i trust very much. i may still be able to go to him, but will be paying out of pocket. but who the $*#$ can afford out of pocket when you have so much medical debt already? him though, he is a GEM. for him, i would make this exception.   [i have never had insurance that hasnt allowed me to go to these doctors….]

most troubling is that my prescription benefits are changing. to a crohns patient, this can most important. im not even sure what to say, other than im terrified, ridden with anxiety & feel a little hopeless today knowing that my prescription regimen is going to change soon. im sure ill wind up back on a bi-weekly biologic that is more expensive than a down-payment on a car.

bringing me to the title of this…. was the last 3 months all for nothing? ive been seeing my current GI pretty consistently for the past 3 months about every 3 weeks. my next appointment with him was scheduled to be Jan 2…. my primary care physician on Jan 9.  now, usually i have no problem rescheduling later down the road, but i need to be seen by both of these doctors. so, that means i need to establish a new GI & fast. aint nobody got time fo dat!

last year, trying to find an assistance program that would let me pay a minimal amount for my Humira required taking off work for two days to find someone that would be able to help me afford the injection. it took more than 30 (THIRTY) calls to med companies before i finally had some type of solution.  i feel like im starting over. im mentally upset, physically not feeling well and having to fast for 24+ hours for xrays tomorrow has NOT helped either. knowing that tomorrow may be the last time im at Aurora (for at least 1 year) makes me really sad. im hopeful that this new chapter has good results, but i am ridden with anxiety.

i read this verse tonight & will say it over and over the next few weeks: “have I not commanded you? be strong & courageous. do not be afraid, do not be discouraged, for the Lord your God will be with you wherever you go” – Joshua 1:9

out of every challenge comes strength, right?

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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

thankful

imagesi have so much to be thankful for, but since this blog was intended to be about a crazy girl training for a half-marathon while living a functional life with IBD.. lets start there.

1) im thankful i have legs.. not only to literally carry me through life, but to give myself the challenge of using the body God gave me to complete this mission. ive had the honor most of my adult life to work with those who are not as privileged as me both physically & mentally. more recently in my career, ive had the opportunity to provide individuals a chance to participate in athletic events they would ordinarily not be physically able to through an organization called myTeamTriumph. through use of adaptable running strollers, individuals with disabilities (“Captains”) are able to participate in real events (and even marathons & triathlons!) through able-bodied athletes from our community (“Angels”). as an Angel, you are the Captains “legs”. sadly, many people do not know the extent of people in their community with severe disabilities. this organization has done an amazing job of bringing light to this by bringing joy to these Captain’s lives & giving them the chance to participate in road races & cross finish lines. you cant help but notice the contagious spirit; because of this, volunteers in our community are more involved in these individuals lives. a fire ignited inside of me seeing how this organization serves this population in such a unique, amazing way. crossing a finish line – something i took for granted all my life until we’d actually crossed the finish line running my 1st race with a Captain. my career heavily involves me encouraging others to advocate for themselves; this organization inspired me to do something better with my life & how i choose to advocate for myself. im thankful for myTeamTriumph for starting a fire under my tush to get the #purpleproject going. i have done 5k’s, 10k’s & most recently, a half-marathon. Christian, Tiffany, Katie, Daniel, Jim.. the whole crew: thank you for helping others put their lives in perspective & honorably serving such an amazing population. thank you for inspiring me each day to reflect on how i can serve others better.

2) im thankful for support – i have an amazing support group to help me through some difficult tests life has given me. each of them provides me with a different type of encouragement or support that gives me hope to keep truckin in the hardest of times. im thankful for the big & little things these people continue to do for me on a daily basis. im thankful for an amazing organization, CCFA – Crohn’s & Colitis Foundation of America, providing me support i needed at a very low time in my life. ive grown so much because of the encouragement i was provided & opportunities ive been given (Honored Hero @ Miller Park, filming an Aha Moment commercial, being involved with raising funds through Take Steps and Team Challenge.) the support i have received in the last 10 years since my diagnosis has been the reason i am now comfortable to talk about my conditions in public. there is no way a 20 yr old Kelly could openly talk about daily struggles of physical pain & also how much it can take a toll on your emotional health.. which leads me to #3

3) im thankful for my humor – years ago, it wasnt widely accepted to talk about a disease involving such personal details like someones restroom habits & my personal favorite, cameras up your butt! (do you know what the inside of yours looks like?) anyone who knows me, knows humor is my coping mechanism. im very much an introvert, but tend to deal with my anxieties with humor. i have a pretty sick sense of humor, but it doesnt take much to make me laugh. i am SO thankful i have not lost my laughter.

4) im thankful ive learned to advocate for myself, while helping others do the same – though my body has seen its fair share of setbacks, im extremely blessed. ive learned to accept that my life will continue to have its challenges. currently, there is no cure for the type of disease i have, but i know there will be a day im able to say “i used to have crohns”. without a positive attitude, there is no doubt in my mind i would lead a very bitter life of denial. what other choice do i have? there is nothing that affirms my life purpose more than when i get a message from a stranger living with Crohn’s or Colitis, especially the age i was diagnosed at. providing someone hope, courage & a new opportunity to change their disposition about their disease will help them accept things. its taken me almost 10 years to learn to accept the life i was blessed to be given & im still learning to accept it, especially on bad days.

5) im thankful for my faith – post-diagnosis, there are many stages you go through, just like mourning. i certainly have gone through stages of resentment in the past 10 years, selfishly asking “why me?” that stupid cliche “things happen for a reason… God places burdens on those who are able to carry the weight..” well, theyre true; it just depends on whether youre willing through that baggage over your shoulder & learn to adapt your life having it present. i choose hope because i know He is with me.

lastly, i am thankful for you.. my facebook, instagram, twitter & social media/blog family, who have made such an impact in my life & given me inspiration to continue this journey through a website. thank you for letting me be comfortable in my own skin. i am forever grateful. #thankful

xox Kelly