thank you for being patient with me

to my friends, family & coworkers,

“thank you” – a two-word phrase that simply isnt used enough. & sometimes, it just doesn’t do justice to what someone or a group of people have done for you.

the past year hasn’t gone how i imagined it would have – after speaking at length with an old friend tonight, i found myself saying out loud what ive thought many times over in the past 12-ish years.. “chronic life means a life of the most unexpected things at the most unexpected times & sometimes this means reliving these moments over & over again”.

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ive struggled in some form since ive had my tonsils removed in June – just not able to catch a break with my immune system. one infection after another, some viral, some bacteria & then christmas rolled around & obstruction then major flare. it has been a very hard time going to bed, knowing there will be little sleep, if any – only to be woken up at 3am starting all over.

many “simple” infections that most folks get leave their bodies within a few days or a week & for me, they seem to last weeks. i get dehydrated easy, sick very easily & no matter how hard i try to control my environment, i end up receiving infusions or going to urgent cares & ERs because my meds are just not cutting it anymore.

much of the past 6 months, i have struggled internally with things that are going on with my body that i simply have no control of. i have been emotional, i have been crabby, i have avoided friends & family have been unfairly rude or mean to them at no fault of theirs. even during these emotions, i dont know how to express myself other than short-tempered, anger or mostly, silence. i have cried a lot in my car & the hardest for me – after an extended period of time bottling things in, i break down in front of others.

and then there is guilt. for MANY reasons – i havent been able to work full-time because of my Crohn’s & other diagnoses that have made things worse. i feel like a failure in much of my life lately – friend, sister, daughter, coworker, aunt. & id give anything to have my “norm” back… even if it means living the rest of my life with this disease, but on a level that i could at least have some type of control. because honestly.. im not sure why my “new normal” is yet – and that could change at any given moment with chronic illness. to my coworkers & staff: thank you for banding together & bring such an amazing team. please dont think i dont recognize and see (even when im not there) all of the things you have done not in your job description to help out when i have been gone. the texts you send, the patience you show me & the kindness & compassion you show to others is exactly why i want to serve others in this role. my goal for Remission is not only for my own health, but to be the best leader for you. thank you for your patience & thank you for doing an overwhelming amount of work during my times of absence, hospitalizations & treatments. nothing in the world can repay you acts of kindness, but i hope a Thank You is a good way to start.
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ive talked a lot about “patience” lately – the irony of this? ive lacked this quite a bit. i know some parts of this particular blog post are vague, but in time i will provide more information & answer questions to the best of my capability…. which leads me to this:

Thank You.

Thank you for your patience, the love you have shown me & the “thinking of you” texts, cards & smiles you give when you’re not sure what to say. i never want to make you uncomfortable, but i realize that some people dont know what to say (who does, really?) and that does not give me grounds to become angry or short-tempered aka – lost my shit quickly. its HARD for me to apologize sometimes, especially when i dont realize how ive acted because others dont understand my illness.. sometimes because we’re blood, i think my family should automatically understand me, remember what i can & cant eat or understand why i wouldnt want to sit at a dinner table & watch everyone else eat when i cant eat any of it. YES, i want to hear about your day, NO, im not trying to be selfish & have no interest about table talk, but im uncomfortable with it and find it hard to verbalize that i dont enjoy it. its not being selfish, its preventing me from breaking down crying because its another reminder that all i want to do is eat delicious food, but cant. thank you for giving me space when you can tell im in “a mood” – you may not know why (physical pain, emotional pain).. but since you know im an introvert, deal & cope in unique ways, youve come to learn i dont handle things as you, or most people would. thank you for your patience, recognizing my lack of it, but loving me anyway.

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it’s obvious that ive struggled – the past few months ive been short, quiet, even more introverted than normal & physically exhausted. i know that the ones who surround me most see this & have really respected my boundaries & have been great about not commenting on my appearance – how tired & anemic i look, my slow pace of walking, my stature & the way ive carried myself. thank you for not making comments & making me feel more uncomfortable. silence is so much better, for my healing, than telling me things i can visibly see in my reflection. thank you for your patience & not telling me i look tired, rough or sad. instead, this week at work on Monday i was greeted with a genuine “you look so great today, you look put together & sparkly” – i cant tell you how much something so little can affect someone. (i hope you know who you are, because you have that tendency to make everyone else around you smile, as well).

bottom line: living with chronic illness is hard, but when life blesses you with people who surround you with love, understanding & patience… youve simply hit gold.

to the ones reading this, thank you for being patient with me, thank you for the extra mounds of work you have put in despite all of your other tasks & thank you for reminding me that i am surrounded by amazing people, going through their own difficult times.

to all that have stayed with me supported me through the most difficult of times, thank you for your patience, as i continue to go through treatments & tests to rule out future diagnoses & find answers to get me back to “me again”.

kel

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be patient with me 

the irony of being an advocate of illnesses that may or may not be obvious at times & living with an illness others may think is mortifying to talk about…
is when you struggle the most being your own advocate. 
ill speak candidly & honestly with you when i tell you that this winter has not been an easy one. ive hit some bottoms that ive been scared i wouldn’t be pulled out of. the fear of living with any disease that may last your lifetime is the struggle of not knowing your “normal”. obstructions, flare after flare, side effects & every emotion that comes with illness. please be patient with me. 

autoimmune disease has wreaked havoc on many of my systems & it’s hard to tell if im a “regular” kind of sick or “just Crohns” sick. it’s scary not knowing how severe one virus can impact your body & it’s scarier to know that no matter how positive i am, or how much i “pray it away”, it will still be there. the scariest part for me is when i start to lose hope. 

many of my friends know me as positive but there are times where that can be furthest from the truth. as an introvert, i struggle to tell others when im hurting (& not just physically). i tend to cope by internalizing many things – always have. im working on this. please be patient with me. 

while many of you follow me on different platforms, please know that while i do try to publish my “real self”, there is much unseen. the dark days are not filled with smiles & funny memes. but then again, who wants to see a picture of my curled in ball in tears wondering if life will always be filled with crushing blows & moments like this? 

its never my intention to share these personal statements with anyone for sympathy. my hope is that this may provide a little insight to those who may not know what to say or do a around those living with illness & the anxieties/depression that it can inflict on ones quality of life. 

please be patient with me.

  

#purpleproject runs the Vegas strip at night!

since i have had so much support & love from all of you in the past, id like to let you in on a (not so) little secret – in november, i will be running my next 1/2 marathon with CCFA Team Challenge – raising funds each mile i train (with Charity Miles) & also with a goal in mind of raising $4,142 – to represent the number of days that i will have been diagnosed with Crohn’s Disease.

training for any endurance event with a chronic illness gives patients an exciting form of anxiety. the last few events ive trained for, they werent under the best circumstances (separated shoulder, Crohn’s flare/rectal surgery & raging arthritis) but i overcame them & was able to still finish last years Chicago half-marathon, meeting a crazy ton of you all who follow this, my IG account or my Facebook page. since then, i have “met” SO many people that i will meet up with in Vegas in November & i could not be more thrilled to be running with & next to the most dedicated, hopeful people i call teammates. how lucky am i??

there are moments with autoimmune disease youre not sure if youll make it another day. since we dont get to pick and choose when those days, weeks or months will pop up, ill keep fighting for the good days – so one day this disease is not used in the present tense when we talk about it & educate others.

here is my link is you’d like to share. id love your help to exceed my goal: http://online.ccfa.org/goto/purpleprojectVegas15

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there will be much more to come in the next few months & id love to have your support through it all. follow me on my next TC half journey to Vegas by following the hashtags #purpleprojectrunsVegas & #onamissiontoRemission and yes, you may see a #runningtothebathroom here & there… because, Crohn’s.

tonsillectomies, adenoidectomies & suppositories! hooray!

DRUGS.

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