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
recently, i attended a virtual IBD roundtable discussion in which one of the panel members said something that should have absolutely not caught me off guard at all, but for some reason, it really stuck with me. “IBD brought me to a place that was extremely depressing” is what was said.. not that it was at all surprising to me, but it caught me off guard that day. so much in fact, that i wrote it down to remind me how far ive come in my journey. there was a point in my life not many years ago i did not want to deal with this disease the rest of my life. i did not have the strength of a small kitten to wake up in the morning & face my problems like a mature adult. honestly, i did not want to leave the house. i was depressed, cried at the drop of a hat & decided i did not want to be on any type of medication (for crohns, anxiety, everything). physically & emotionally, i was at a very low point.
its easy for many chronically ill patients to become depressed, as they feel overcome with sadness and the lack of control over their bodies. adding an extremely fast-paced month full of holidays & family gatherings + changes in weather can be too much at once.
christmas is meant to be the most joyous season, right? its not that i grew up hating christmas , but many years it wasnt too big of a deal to me (which is a shame). i cant honestly pinpoint one specific reason i dont seem to enjoy the holidays. i guess id tack it up to the business & stress. my mother happens to not enjoy the season as much either, so we tend to commiserate together in our different ways (hi mom!). this year, it was different. physically & emotionally, i am in the best shape and state of mind i have been in…. in years. this year, it was different though. i started enjoying the things i never had before, without getting stressed out.
but christmas, maybe winter rather, has been tough on my body so far. ive had many tests done over the past few months, with little to no answers for me to work with. these tests have been physically exhausting & demanding while working full time & sticking to a fitness routine. amazingly, ive done a great job at keeping my stress levels down, remaining hopeful the next regimen will work out better than the last. honestly, i have been mentally/emotionally GREAT the past few months… but the moment i woke up on christmas eve, i began to cry.. for no reason. i was exhausted & every inch of my body hurt. starting my day was an absolute failure. broke a glass all over the kitchen floor, spilled juice on the carpet, was sick all morning. i had a dress laid out for church, brand new from the mall, but when i finally got around to putting it on, it looked awful. nothing else fit & i had just gotten rid of most of the clothes i owned to goodwill earlier in the week. with less than an hour to go before going to church with mom & dad, i had nothing to wear and looked like a hot mess from crying. Jesus wouldnt mind me wearing sweatpants for his birthday would He?? i had no energy. why now? i somehow managed to get out the door with a few minutes to spare in time for church. still, i took a breath & didnt rush myself – a theme i knew would be important to enjoy the holidays.
after church, the rest of the night was filled with giggles from the little ones & funny stories and memories shared around mom and dad’s christmas tree. i was exhausted and still emotional, that may or may not have been apparent after crying after spilling an entire plate of food. and it wouldnt be a christmas without falling! once in the driveway & once down the stairs!
i think there are several underlying reasons christmas is hard: 1) the food – its stressful knowing that whatever i choose to eat and drink will 90% likely make me extremely sick. it never fails – christmas, easter, thanksgiving. the stress comes from wanting to indulge and being forced to make achoice – do i indulge a little knowing ill be up sick all night or do i watch everyone eat & awkwardly salivate at the sight of the rich trimmings of food. every holiday poses this dilemma & its never easy. though ive learned a large number of foods i cannot have, its harder knowing what i CAN have, especially not being on Humira which allowed me to eat some unforgiving foods. 2) being single. it never fails that im reminded at every family gathering that i am the only one without a significant other. this shouldnt bother me, but it does. i should be grateful for all of the wonderful family surrounding me, but i would love to be able to share those laughs with someone too. maybe its exhausting being reminded that ill never settle down. 3) expectations – everyone elses. its hard for patients with chronic illness to feel normal during the holidays; everyone is rushing & looking forward to things, while were just honestly trying to keep up. decorating is simplified, holiday baking is minimal and shopping on a good day for me is horrible at best(absolutely.hate.malls.).
im looking forward to wrapping up the holiday season (and 2013) tonight with the two people that have been through the most with me (& dog). after church, mom and dad & i are ordering chinese and hanging out just the three of us. i couldnt think of a better way to wrap up an amazing year.