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.
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.
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.
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 →
Originally posted on Thought Catalog: llaszlo They’re tough, because they’re used to being scared and uncomfortable and in pain. But that can be tricky. They’ve learned how to fend for themselves, so sometimes, it might take them a little while…