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
you just turned 16. life is exciting. you have the world at your fingertips. you learn how to drive this year! there are so many things id like to tell you, answers that would have been useful & encouragement that you needed at certain periods of your life. have a seat & lets go through a few things:
dont go for the slidetackle. having your knee completely reconstructed the summer you turn 16 isnt ideal. having an unsupportive wobbly knee for the rest of your life isnt, either. this game will prove to be, essentially the last game you really ever play. though the rehab sucks, you get to work out with mr suda every day after school. listen. his advice proves to be meaningful during the next few years of your life.
have hope. you will have a brush with death in may of 2004. 3 days after your 17th birthday, on july 13th, 2004, you will be diagnosed with Crohn’s Disease. you will have more questions than answers. summer is a blur & is spent with family trying to put the pieces together of a heavy diagnosis. much of the next few months you spend in the bathroom or on a couch dependent on other people. you will learn how much your brothers care for you. (when you get home from the hospital, dont try to carry a gallon of milk up the stairs, you fall.) that disgusting hospital spray? leave it there.
the next year is full of steroids, different concoctions of many pills & your best attempt at senior memories. then comes college; i wont give it all away.. some of that is pretty fun to find out on your own. some of it is not fun.
hug tighter. the day before you move to college, a friend passes away. you will regret how you acted the last time you saw him.
life at 21 will be hard. trying to live as a functional college student just beginning to learn how your body attacks itself is hard. no one will understand it, including you. despite hours full of IV Remicade each month, you’ll go in for a routine GI check up & walk into your first surgery an hour later. that one doesnt end fun. you’ll sit on a donut for part of the semester. it will become a funny conversation piece. (youll still have issues for a loooong time). youll get a second diagnosis of IBD, this time Ulcerative Colitis. that hopeful self-injection they want you to take? no one tells you that youll need it the rest of your life. instead of sulking and seeking other ways to ignore the pain, accept it. life becomes SO much easier when you accept it. you wont be (as) bitter & your focus in life becomes crystal clear. you will be an advocate for yourself & share your story in front of Miller Park. ps – its windy that day, leave the cards at home.
you will gain relationships with lifelong friends & you will gain new family (sisters, a niece and a nephew – that part is not finished yet). loved ones will perish because sometimes, those who love us the most, stay for the shortest time here on earth. you will lose yourself in relationships, but somehow pick yourself back up. you will learn who your friends are & lose unsupportive links in the process. your faith in God will be tested & many times, all you will be able to do is cry. keep praying – things get better. college is full of ups and down (you fail stats class), but you graduate. & even make the Dean’s list! milwaukee turns out to be the best decision youll ever make, ill let you see why.
at 23, you will be tested & make a choice that will impact many lives. you will relive it many, many times. in the end, you will win.
youll fall in and out of like in many different places, sometimes the same place twice. some of those that are let go prove to be blessings in disguise. in time, the wounds heal. trust me, things definitely work out ♥
life with an illness isnt easy and there are are many obstacles you will face. your first job, your first apartment.. you will work your ass off. youll be faced with a decision to make, which will likely be the hardest one you have had to make that will lead you to today.
if there is one piece of advice i could give to you it would be this: do it all over again. dont do anything different. its taken 26 years for me to love you this much. blessed is the life you live. you have hope, you have been given support and you have decided to do something bigger with your life.
ps – dont forget to smile.
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.
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?