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
its been nearly 5 months since ive wrote. ive started a few, but became quickly tired. honestly, i had good intent to finish.. but the handful of times i actually had time to sit down, i found myself rereading things i didnt feel anymore.
i have had ups & down, but this is the first March in a few years i didnt spend any weeks in the hospital. for this, i am extremely grateful. i DID spend a lot of time at different specialists & unfortunately i will be adding more members to my care team, but i believe this is the right direction. im pretty sure if us patients collected badges for every doctor visit we had, we would need multiple cub/girl scout uniforms to hold the number of badges we collected.
ive been having a rough go with my body adjusting to meds. ive tried acupuncture that has helped with nausea & vomiting, but found that i was spending more time arranging appointments, driving as well as the cost of the appointments.. it helped a lot, but also really, really irritated the neuropathy in my body & i found myself expending way too much energy trying to heal from my appts.
my body is tired & my eyes are misty. i feel weary about where my regimen will go in the future. my infusions are faring my stomach well for now, but i dont feel like i am where “should” be. i find myself recovering from meds my body needs much more than i am healing & finding a happy medium. what would be simple infections to most people have plagued my winter.
im excited for more projects than i can count on one hand. being invited to patient advocacy summits, seminars & being an ambassador for multiple non-profits i truly enjoy working with that make a great difference in the care that patients receive. im humbled to be asked to represent part of the patient community, and being able to share these projects so that this audience is able to participate in makes things worth the sweat! teamwork makes the dream work.
i look forward to writing more. i have been saving pennies purchase a nice computer that i can rely on to share valuable information.
what was the first thing you noticed about this picture?
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.
#IBDselfie #IBDawarenessweek #inflammatoryboweldisease #crohnsandcolitisawareness #chronicillness #CCFA #crohnsdisease #ulcerativecolitis #crohns #colitis #autoimmunedisease #autoimmune #IBDfamily #CCFA #teamchallenge #myIBD #1in200 #iamjustone #purpleproject
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.though 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.im 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.
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.
the 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.
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. in 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).my 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.
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).
this 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.
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.
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!”
my 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.