a full cup to 2018

pop, fizz, clink.

boy am i ready for a new year. a chance to get things right. a chance to do better.

as i look back on 2017, there are so many things that i must acknowledge that i lost – my health, my job, my savings and nearly my home. but what’s most important, is that even though i thought i lost myself, i didnt. i discovered many things in 2017 that have made me a better person, a more empathetic person and a better patient mentor. i also discovered that when you hit bottom, the only place to go is up.

still dealing with a new neurologic diagnosis and waiting for another unknown that has been looming over me like a dark cloud for the last several years has worn me down. it has broken me at moments and tested me during many others.

in january, i underwent a simple procedure to test for certain antibodies for several degenerative diseases, as well as to rule out any possible infection that was causing my symptoms. thankfully, i was infection free, but the spinal tap came at a cost and not just financially. about a day after my test, i developed a terrible mind-splitting headache, something that can be a result of what’s called a “spinal leak”. i had to go back to the ER to get not one, but two epidurals, which were both very bone chilling due to an error made by a medical provider. thankfully, the anesthesiologist that helped me, held my hand and let me lean on him while another doctor did what he needed to do. about a day or three later, and much laying on my back, things went back to normal.. until they didnt.

if my gut wasn’t triggered by my head, my head was triggered by my gut. and during the winter months, my arthritis wages a war on my body that eventually led me to where i am today.

i have to believe that things happen for the greater good. for me, losing my job to illness was punishment at first. it took me nearly 6 months after leaving to realize that my body is just not cut out for a salaried, full-time job. ive begun writing full-time, for a great company who supports me and never expects more than i should give. let me say that again. when negotiating, this company told me to “only do as much, when i could and wanted to”. working with health advocates writing about many different types of diseases, their clients, as well as content writers, obviously deal with illness first and life second. soon after, i realized this was what i was looking for, for so long.

it wasn’t long after that i secured a part-time job. and then a 3rd and a 4th. it seems i was busier working part-time than i ever was full-time, but it was a good kind of busy. my priorities finally began to fall in line, for what i needed to do for myself. i got in line with my doctors and made sure i had what i needed to be successful in the coming months.

and then i lost my insurance.

turns out, medicaid doesn’t like when you make $7 over the allotted amount for the month. and just like that, i was in limbo. i was a 29 year old woman with many pre-existing conditions, terrified of what lie ahead. i had already been waiting 3 months for a prior-authorization for my next biologic to go through… when i lost my insurance. the last day of october, i received a letter in the mail stating my coverage was ending november 1. what a kick in the ass. how many more times could i be kicked while i was down?

so i began to live in a state i never thought id live in: i was uninsured despite being ill.

so much that others take for granted that the ill can only see in dreams and in desperate moments of hope. when is health actually valued to someone who has theirs? ive spent the last few months getting by on what i could. at one point, i qualified for food stamps – something i never thought would reach. im so grateful for those 3 months of help, as my nutrition has already been at fault by flaring quite a bit since my last scope.

it wasnt until i started serving the homeless at a local shelter that i truly looked up from my knees in my weakest of moments and realized how ungrateful i had been for all that i do have. i may not have found Remission, i may not have found a drug that controls my neurologic deficits and i may not have been insured, but what i did find was far more significant than myself. i quickly realized during my interview how closely i had been from being homeless myself, that things can change – for anyone – at a moment’s notice. 6 months ago, i could have ended up at a homeless shelter, and now i find myself serving the guests there working what few hours my body can tolerate in addition to writing full-time, caregiving on the side as well as a pet-sitting business.

you win some, you lose some. by losing, i won so much more

i dont wish being uninsured (& uncared for) on anyone. but i learned a lot in the process. have you noticed how many “i” statements are in this blog? i have – pun intended. throughout the last few months, little by little ive started to regain a little bit of my self-love that i had lost for myself throughout the last few years. i began doing things for myself, in my best interest, even though someone else may have been impacted in a good or bad way. i had to back away from social media quite a bit (as well as my blog) in order to regain a sense of purpose, timing, and appreciation for living in the moment.

in my fight, i learned how much my doctor and care team had been fighting for me, despite how long we had to wait. i learned how much other doctors, some many miles away from me cared and made sure that patient voices like mine were heard. i learned how much i must truly depend on myself to advocate for myself, instead of others. and i learned that was a really difficult thing.

things happen for a reason and even with what little i have right now financially, the little in my heart & head means so much more. and in all of the jobs i do, i have found a way to serve others. maybe it’s selfish to find such happiness in serving others. it’s something i’ve thought so much about this year – my ability to care for others so deeply, yet lack self-care for myself. so that is what i continue to work on. not as a resolution, not as a “turning over a new leaf”, but as a deeper sense of who i can still yet be to others, and to myself.

i hope 2018 brings each and every one of you stabilized health, a solid, honest support system, enough food to eat, shelter to keep warm and self-love to continue fighting whatever it is that you may be fighting.

you matter. i hope part of your goal for next year includes self-love, self-care, and self-admiration…. for as we all know, you cannot pour from an empty cup.

all of my heart,
kelly

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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 

why i smile.

what was the first thing you noticed about this picture?

what did you notice first?

what did you notice first?

1 week worth of meds? 1 years worth of medical records & insurance claims?

this photo captures the meds i take on a weekly basis. i should clarify not all of these are medications for crohns disease, but surely 75% of them are to counteract the side-effects of the medications that keep me alive. that keep me living. that keep me smiling.

there are many risks to the medications we take & ive experienced some very scary ones, some that have left damage & others that have made other drugs unsuitable for me to inject now.. but a life of Remission is worth the risk & that is something i will always believe until we celebrate a cure or a vaccine that could potentially prevent IBD or eliminate carrier risk.

at 17, entering college, i took upwards of 35 pills a day (12 just being pentasa). after months of taking so many pills a day, the sensation of putting any pill in my mouth made me puke almost every time. there were days i simply couldnt hold down the pills because it was just too much.

time is a blur, but within the next year i would return home every 4-6 weeks & receive #remicade infusions. my mom accompanied me to nearly every single one. soon the #infusion center felt like home & i would return on my own. & soon, i made my parents stop driving 8 hours on the weekends i needed infusions and asked if i was able to receive them in the hospital across the street from my dorm room. lucky for me, i did not have class on fridays, so i could wake up in my sweatpants, put on my jacket & walk across the street – on good days, i would study & the bad, i would try desperately to sleep despite the awful sounds i would hear, as i was across from the ER. years have come & gone, infusions turned into injections, then eventually back into infusions.

this photo captures many things, but the thing i want you to see is a smile. its a pretty simple thing to a lot of people – a smile in a picture. but pairing it with a representation of only a weeks worth of meds being chronically ill for over 10 years? to a person that gets it, they know how hard smiles can be to come by.

the 16 year old girl inside of me is roaring with jealously; the 17 yr old girl who had a terribly swollen face in her senior pictures is screaming. the 18 yr old girl with little self-esteem entering a new relationship wants to strange me. and still to this day, living as a 27 year old single woman with Inflammatory Bowel Disease, life is still a strange & terrifying thing to me. its still full of pill boxes, infusions, injections, hydration powders, nutrition supplements, sharps containers & pillboxes with timers built in…

but NOW, there is a smile. it might have taken 10,000 frowns & 10,000 other smile to get here, but im happy now. 10 years have passed – way more than 10 colonoscopies too. but in my journey, ive met amazing people whom i cannot put a numerical value on, only sentimental. ive met new friends that have had eerily similar diagnoses, received hand-written letters from across the globe & even ran a 1/2 marathon with Team Challenge Wisconsin and along the way, passed by & met/ran with members of teams all around the US who i still keep in contact with.

i have met new people, found peace with my #diagnosis & have even managed to change some lives along the way – even if only for a day. some people in the #IBDcommunity dont agree with the sense of humor i have & to them i say, thats okay! i advocate in different ways than others but doesnt make me any less credible & shouldnt make me any less happy.. and certainly shouldnt make me hold back on going after my dreams. im this way because i want to be & 10 years ago, i would have never had the emotional strength to go through scopes, hospitalizations, #infusions, injections & surgeries that required me to be in the most humiliating “jackknife” position. humor has always been my coping mechanism & if that means making fun of myself without the risk of hurting someone, i will.

im thankful to have been blessed with this curse. i know this life is not what my parents had intended for me, and certainly not what i envisioned it to be. but the truth is, i am beautiful because of it. all of the bad shit my disease has given me, its given me SO much more than i have ever deserved.

despite living with #IBD, i smile.

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#IBDselfie #IBDawarenessweek #inflammatoryboweldisease #crohnsandcolitisawareness #chronicillness #CCFA #crohnsdisease #ulcerativecolitis #crohns #colitis #autoimmunedisease #autoimmune #IBDfamily #CCFA #teamchallenge #myIBD #1in200 #iamjustone #purpleproject

being active while flaring

throughout the past 9 months, ive used my energy sparingly.  ive had ups & down and through the times ive spent in between trying to heal, there have been many moments of acceptance, and sometimes of denial.. cycling the stages of healing.

the past few weeks ive done a damn good job of putting my smile on (sincerely meaning it). ive learned over the past year how reliant people have become on my advocacy…. texts, calls, email beeps in the middle of the night from scared patients, some people need emergency advice & some that just really need to hear that they will get through the night without their pain killing them. let me be clear: i in NO way, shape or form would change this.5-17-14 414though i dont have an ostomy, ive been able to help other with them with other aspects of how their IBD affects them. if there is a patient/friend who needs help & i cannot answer, i find out the information for them, or connect them to the right person.  i am the type of person that will not rest until ive thought of a solution where i am able to bring at least 2 good options back to them instead of just the problem.  im solution-oriented; and when i cant answer…. i research until my brain is fried. there are times that it is SO clear to me God gave me this life because i AM strong enough to live it, but i am also encouraging enough to make others feel that one day they will also feel the same way.64917faabd5fe5a7059db2f1b0f2057aim exhausted being there for people while trying to keep control over my physical, mental & social life…. but i chose this life of advocacy because no one needs to feel alone living miserable for an extended period of time. when the stress builds, ive become good at recognizing that & knowing when i need a backdrop of crickets.

my kind of night.

living with chronic illness, there are two choices to have: be a victim or .. in real life terms… life lessons with chronic illness are comparable to being a colander in how you would drain water from noodles, fat or the rest of something that doesnt belong. when you go through struggles that give you opportunity, use your colander to dump out the excess stress and keep in the bowl the things youd like to learn from that experience.. things that will help you overcomes obstacles in the future.
20131216-204808.jpgthe figurative mask i wear at work, while im out with friends & in public.. i dont do it necessarily on purpose to deceive people.  you may very well not know that i spent the entire morning puking out what i ate before, in the bathroom before i went out for the night (NOT getting read) or walking as straight as i can when my hip hurts..

this week i pretended not to have a disease (you do this a lot, as often as you can) but there are days when this works better than others. this week was no different than any other, but i tried, overwhelmingly.  though i had a very bad weekend last, i was determined to make it a good one this week, slowly but surely.

aint no party like a neb party

lately, my hands feel like theyve been crushed multiple times in a large vice. ive been trying just about every suggestion to keep them comfortable, but i wont know more until my appt with my rheum this week, where we’ll be upping the methotrexate again. its hard to hold pens, they stiffen or cramp at the worst time using them at work & its impossible to do my hair.. you dont know what pain is until youve braided a long pony tail over and over and over. im not ashamed to admit i cried every time i tried. 37456688236b5eba0e236fadc5bed694in the past 6 months, ive had other people even do my hair because it is so frustrating & painful.  i think mom is starting to get it when i have the hand flars.. not that she ever didnt, but she like most people assumed towards the beginning that the warm water and soap would be good therapy.. this week i even let her braid it (getting me to sit through a hair brushing or braiding my hair when i was little was like trying to baptize a cat…. things havent changed much).photo6my pain scale was off the charts in my hands & left hip this week, but i moved about my business anyway.

played piano for a 1/2 hour every day. frustrating to re-learn something you havent touched in over 12 years but i promised myself i would do it. not only does this increase blood flow to my fingers, but its the best workout for my thumbs right now, which are the most affected. (shout out to Pat & all my amazing family to help make that happen…… even though there is a creepy lady that comes on & tells me “come play” when i forget to turn it off.

meow-zart.

went to the driving range with some girls from work & lasted about 45 minutes before i totally lost my grip. the 3 of us wanted to do the 9 hole course the range had behind it, so i happily went along for the walk. i put on a few miles that day so i didnt feel too bad, since im still a few weeks out from running.. the lack of activity is really getting to me & leaves a lot of time to overthink things. (august cant come soon enough).

photo7this weekend i went kayaking down the Wolf & had a blast. by the end of our trip i couldnt walk nor nearly hold by paddle, but it was a BLAST. when you hang around people without the issues you have to worry about, it feels so great to forget about it & just live. im thankful for friends that see beyond my disability & are willing to ask me if id like to go along anyway, even if ive declined their offers 50 times previously.

only tipped er once!

being active with any kind of autoimmune disease or chronic disease can be hard.  i never know when im going to need to use the bathroom next, so i plan my running routes around where i know permanent restrooms are or where the port-o-potties are. during the summer i lived here, i knew exactly where each pit stop was from my house to lambeau field & back. the ONLY time ive ever had a problem was the day they took all the ports out of the parking lots & was left running to the nearest gas station.
true_porta_potty wear your roadID, use your roadID app or an identification bracelet when youre in public & happen to find yourself sick. i hate having to wear it, but my medical alert bracelet goes with me no matter how far from home im running – it may save my life one day. when i run, using the roadID app, it will notify my emergency contact if ive stopped and have no activity for a certain number of minutes.

do your stretches, properly any time you are moving about. foam rollers might be your worst enemy, but they will soon be your friend once you find your rhythm. low resistance exercise may be the only form youre able to do while you flair.  meditate, do yoga… keep your mind moving & your joints too. “motion it lotion!”

indexmy rheum told me to try massage therapy….. while i wish my first one would NOT have been after a day kayaking several miles, any other day it would have felt amazing. this appt was scheduled months & months ago and couldnt cancel it, so i went anyway.  DO NOT DO THIS.

whatever is it youre doing being active, bring water on your water pack, 3 miles or 13.1 miles; biking, running, or doing yoga. im amazed how many strangers have stopped when i take a pit stop & dont look too good.. seeing kindness in strangers is amazing during runs.

also, high five passerby’s. always high five.high five