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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supporting a loved one with chronic illness – guest blog series (Mom)

by now, its safe to safe that my parents have a pretty good understanding of my struggles living with chronic illness. ive struggled for a long time being the only one in my immediate family that has the type of disease i have. no one is perfect & it would be unfair to expect them to understand every single level of what it is to live with a disease with no cure. understandably, there is a certain aspect of chronic illness that parents must face. its not just patients who deal with physical and emotional struggle. no parent wants to watch their child go through such a physically and emotionally demanding journey. countless times ive heard my parents say “if i could trade places with you and take away all of your pain, i would in a heartbeat.” 

at diagnosis, they witness physical struggle of their child’s body attacking itself. some feel guilt, as they are unable to control anything watching their children lie in a hospital wasting away. during treatment, they see their children being sedated, poked, biopsied, screaming in pain. watching helplessly, it is no wonder many parents of chronic illness patients deal with anxiety, depression and isolation. there are times when i am unable to verbally tell my parents im struggling with something, and in turn, it comes as anger or fear. sometimes it takes an angry outburst for me to even realized im stressed out about something. luckily, my parents do a great job of realizing this anger is unintentional and have been very forgiving to some of my anger.

in any given period of my life, there has been 2 people by my side, giving my unconditional love, support & encouragement through some of the most challenging moments in my life. if there are any two parents who deserve a gold medal for being the most deserving of the “patience” award, it would be my mom and dad. now that im back home, im less hesitant letting them know what i need help with. one week, it may be giving me a hand changing my sheets because it would take me an hour knowing how much my joints and muscles hurt. as a parent, i can imagine its a good feeling knowing that youre still needed even when your children are grown, and over the past year, ive really tried to let them know what kind of support i need instead of leaving them in the dark knowing im not feeling well. its still hard. i think it always will be. take steps walk 2011

ive asked my mom to give a perspective of my journey and some of the things we’ve gone through as a family. this is the beginning of my guest blog series, from the eyes of a parent:

“Kelly has been “special” since the day she was born. She was two weeks late and had to be induced.  She didn’t wanna face the world I guess.  After only an hour of labor, she came in kickin and screamin; our beautiful baby girl.  To be honest, she was a “she devil” from day one.  She was collicky baby.  The youngest in our family, with two older brothers, close together in age. She was always sick. Always.  She was hospitalized for virus when she was barely three months old.  She had casts on her legs, she had asthma, didn’t sleep thru the night(still doesn’t), didn’t require require much sleep, trashed and wrecked and ruined everything.  This is not an exaggeration!  She was destructive, she bit other people and we even caught her sneaking out back door as a toddler in middle of the night. She was always singing and talking. She was smart and vocal. She was a bossy and sassy little girl. (wonder where she got that from).

Looking back, I think we should’ve known something wasn’t right with her, but couldn’t pin point it.  I remember her getting lots of belly aches, not uncommon in our family, as irritable bowel syndrome runs in both sides of my family.  She missed functions, the graduation of eighth grade of her brother, family functions, & parties.  But not till junior in high school did we realize this was something more.  She went on cruise with family friends, and was sick the entire time.  She was sick before she left as well, but we thought just a bug. By the time she got home, she couldn’t keep anything down. We tried everything. We went to doctor and emergency rooms so many times. Test after test after test.  We heard “she is depressed” or “it’s all in her head”, or “its just stress”.   Listening to your daughter screaming at the top of her lungs as the ER doctor gave her her first ever cervical exam, we knew something was wrong.  We couldn’t touch her without sending her screaming.  If you so much as tapped her, it sent her thru the roof in pain, everything was so painful.  After going through one surgery at hospital for an ovarian cyst, the most wonderful Doctor in world came out to talk to Jim and I. This is same Doctor who literally carried her to wheel chair in his office and wheeled her himself down to hospital.  He said what we were afraid and knew already; the pain and all other symptoms were not at all related to the cyst.  Her bowels exploded in the operating room.  He knew then to call in our life saver, Dr. Ravi Kondeveeti.  He was GI specialist who really, saved her life.  He told us he thought he knew right away what was wrong with her.  After two weeks, in Intensive Care, after many, many tests and medications, we took her home.  She fainted in first half hour she was home).  I know she doesn’t remember most of this, as she was so very, very sick. 

Since then, she has had surgeries, injections, IVs and medications that have many, many bad side effects.  They don’t work, or if they do, they last for only a while.  As parents, it is very frustrating and breaks our hearts to know this is something she will live with forever.  I wonder if I passed this on to her?  No one has Crohn’s or colitis in our blood family, but our sister in law, has it. The only exposure we knew. She had it bad, had surgery for colostomy even.  She is a terrific role model for Kelly and doesn’t let anything get in her way. 

Is chronic disease expensive?  Hell, yeah!  Needing to come up with family deductible January 1st every year!  All the Dr visits, hospital stays, medications, broke the bank..  Now that Kelly is on her own, it makes me angry and sad to know, she will have tremendous medical bills, and we can only help so much.  We are lucky to have such good family support.  Her brothers have always been protective of her, it was actually touching how so when she was hospitalized. 

Many people don’t know about these diseases.  People say stupid things sometimes. I will never forget a friend of ours saw her steroid face and told her she’d gained quite a bit of weight, making fun of the way her face looked. Most people in the family and her friends, do know about the illness and are understanding.  Her sense of humor and potty  and poop mouth, are hysterical.  Her humor has had a way to get us through tough times hasn’t it? 

I hope and pray someday there is cure found.  Realistically, there are things she may not be able to do with this disease. Kelly may not have kids. She is terrified of passing this gene on.  She may never get married. It takes someone really special to handle this disease. She may never own a home, did you ever see her bill folder?

But…….  she does have an incredible sense of humor, a willingness to educate others on Crohn’s and Colitis, a strong will, an attitude that is so inspiring, a smile that melts your heart, a never ever give up attitude – tomorrow will be a better day attitude!  She is always researching and educating herself and others.  This may knock her down at times, but will never knock her out! 

Love you Prinnie!

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i love you, mom.