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

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WEGO Health Activist Awards

20131217-192815.jpgWEGO Health Activist Awards

im a firm believer in…. standing up for what you believe in! behind every choice in your life should stand someone who has good moral, best interest for all parties involved & the ability to help support others by supporting the small goals towards one common goal. thats teamwork, right?

my support team doesnt just involve friends and family. my support group lives 25,000 miles away. my support group lives online through social media, through magazines we produce, through professional communities and national non-profits. many people make up my support team of IBD specialists – i say specialists in a unique way. we may not all be doctors, but we have something better than doctors will ever be able to tell us; personal experience. we have been operated on, tested on, criticized for not looking sick enough & criticized for the way we look when we are sick. something else doctors will never be able to tell us is how to deal with these things when they happen to us.

there are many people that have helped me on me journey to become who i am today. i am eternally grateful for the wisdom and advice they have given me throughout the years. it hasnt always been easy to hear, read and experience, but it has helped me cope. it has helped me come to terms with my diagnosis and live a better quality of life. most importantly, it has taught me to fight.. for myself, for others and for awareness.  many people look at social media like it is a negative thing, but i have had such an amazing experience connecting with others like myself, that i couldnt imagine a life without it. communicating with others who live with IBD and chronic disease, raising awareness to diseases like ours, finding funds to study and research towards a cure and… drumroll… advocate for others!!

im proud of who i have grown to be and that speaks volumes. ive fought like hell to be where i am today and have many people to thank for that.

i ask that you nominate your health activist heroes & the people who have helped mold you into a better person, advocate & patient. maybe you dont have a disease but you follow someone elses journey or blog through social media (instagram, twitter, facebook, website/blog)… i ask that you dig deep in your heart and thank them with a nomination like i have. take the time to browse around some of the blogs that may be related to mine & you will find some amazing, courageous and crazy, fun people who find ways to fight for others by providing them support and relief that things will be ok.

awards.wegohealth.com/   – nominate your favorite activist here!

http://instagram.com/jojocrabb https://www.facebook.com/jojocrabb  https://twitter.com/kjocrabb http://www.linkedin.com/pub/kelly-crabb/71/bb2/a44/

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?

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
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