Remission

im not sure what Remission means. its not something im honestly all too familiar with. the last time i was in clinical Remission, was before i was diagnosed with crohns disease or ulcerative colitis. Image

i capitalize Remission for a number of reasons, but the main reason being i see it as a state, a royal majestic state. if you read much of my writing, im sure youre annoyed by my constant writing habit of writing in all under case, with very few exceptions.

as much as i hate to admit it, there is no way around “if”. “if i knew what being in Remission meant.. “if i had enough energy to finish my day as strong as i started it”.. i think every single day, i find myself finishing my “if” quandaries differently. “if” is one word i one delete from the language of chronic illness. its so limiting, so restricting.

many days, Remission to me, means reminding myself of the things im not able to do. and. this. sucks. who wants to be reminded constantly of the things they are unable to do, and even worse, condemn themselves from doing these actions? im my own worst critic. its an awful feeling having to doubt or deny yourself things you deserve to be happy in life.

my daydreams of Remission are vivid.. soft puffy clouds, cats riding unicorns, sparkly ice cream cones floating in the air, mountains of cheese flowing like lava into the streets, dancing orchestras on Fat Tuesday, huskies saying “i love you”, playing dizzybats with old coworkers and havings drinks at the bar winning dart tournaments at Wolskis….. living freely without hesitation.

Remission to me means being able to wake up in the morning and jump out of bed & having the ability of walking out the door with no medications. instead, i pick up my heavy sack off the floor before i leave, knowing i will need at least 3 of the 8 bottles of medication in it before noon.

Remission means no puking, or spending 60% of my days in pain. Remission means food. Remission means being able to be in public and not be disgusted by the smell of other peoples that i cant eat. Remission means no lung issues, chronic rotten infections, days spent hurdled up in bed, or nights spent crying on the bathroom floor. Remission means allowing myself grumpy days that are completely unrelated to my health – & really happy days celebrating my ability to breathe freely. Remission is a sigh a relief. Remission is family, friends & never cancelling plans. Remission is Hope, a Future. Remission is smiles. Remission means normal.

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glass case of emotion – holiday blues 2013

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.

cheers, kelly.

all i want for christmas is a set of functioning bowels (IBD awareness week 2013)

not to much to ask, right?? i know.. i know i should be grateful for the bowels i still do have, but for how often they hardly work (or is it working too hard??) i would appreciate a fresh set of them.

today i was supposed to have my follow-up to see how my levels are doing since being off Humira. so far the only physical things ive noticed as far as withdrawal from the injection are muscle aches and very sore joints; i can unfortunately tell with how much pain i have been in lately (not localized to one area). its been a long week at work & stress is trying to sneak its way in to my body. i think ive done a pretty good job of finding ways to eliminate most of my stress in healthy ways. i think most of the biological withdrawal will be evident in the next few months to come as far as increased stomach pains & more frequent trips to the bathroom, but for now, i want need to remain off biologics & enjoy the time im able to have without them in my system. ive only been off of them for a little over a month. even in just this short period of time my immune system is better, the psoriasis caused by the injection is lessening (but still evident), i have had no flu-like symptoms and my overall spirit has been lifted since i dont feel weighed down by an injection every other week.

ive been researching the two types of chemotherapy my GI would like to try out.  6mp & Methotrexate – both very risky drugs. Humira turned out to be a scary drug for me, but did not know this when i first started. unknown risks of long-term side effects.. obviously, anytime you start a new medication, there are risks, but these arent your typical run-of-the-mill side effects. these medications used to treat IBD are scary. these 2 specific therapies are used to treat different types of cancer including leukemia – thus proving how potent they can be.  its first side effect listed is obviously well-known, vomiting. next comes nausea, hair loss, easy bruising/bleeding (which is a huge concern in IBD patients; which is why blood tests are so frequent from possible worsened anemia), dizziness/fainting & joint pain/swelling. long term side effects include liver & lung damage.  i even read that one of these drugs is/was used for abortions in the past (!). there are many things to consider when choosing these drugs and which will prove to have more of a positive effect on ones body than worsening one’s health. how will these drugs impact my life? as much as i dont feel well since my colonoscopy, at what length do we have to go to achieve maintenance for my symptoms?

so why chemotherapy? for many patients that need to remain on steroids in order to stay out of a terrible cyclic flare, or have a severe flare after stopping the use of steroids, Methotrexate & Mercaptopurine are a way to achieve the same results without chronic steroid use. since i fall into the category of chronic steroid use and my body has seen an extent of long-term damage from them, its time to try it. i guess ill have the next week to continue my research and try to remain neutral regarding what i find. most of the articles that pop up are so negative, so im thankful for some of the online communities im a part of to help find the positive & put it into perspective, how these meds have been successful for them. i dont know what my future has in store for me, but im determined that i will find something that will work for me. the unknown is a really scary thing to me; im not great with change. researching and finding only negative response and feedback sucks to be honest. having a disease with no cure sucks.

here is more information on why treating IBD with chemotherapy has been effective in many patients:

http://www.med.unc.edu/gi/specialties/ibd/images/treatment-of-crohns/Methotrexate.pdf (VERY helpful website)

http://www.healthline.com/health/crohns-disease/6-mp-remicade-methotrexate