in the midst of uncertainty

“as your faith is strengthened, you will find that there is no longer the need to have a sense of control, that things will flow as they will, and that you will flow with them, to your great delight and benefit” – emmanuel teney

one of the first things you have to learn about living with a disease is learning to accept that you have no control of what happens to us in some situations, but we have full control over our attitude and how we decide to react. though i may be in the middle of an unpredictable disease, by taking responsibility and doing all i can to control the rest of my body and what i do with it, i am taking control. running and training is my way of controlling what i can, even when im literally running from a treadmill to a bathroom..

i feel pretty in limbo this week. after having so much anxiety to see which direction my new treatment will take me, ive developed Google-itis & have done entirely too much research on the 2 drugs that will hopefully get me  where i need to be.  everything ive google so far has been negative & unfortunately, there are a lot of patients that put their horror stories online for the world to read.  even more unfortunate, there is a correlation when drugs start to work.. there is a tendency for patients to stop using online support groups once their drugs start working. most of the time, they dont go back to the online forums and tell them their success, since they no longer need the support or validation of others.

so i guess the theme of the week is going with the flow, something i really continue to learn with this disease. many years since living with this disease, my time of the day i seem to really struggle with is morning shortly after waking up. when you wake up, so does your immune system – much like my brain, my stomach does not like mornings either! lately though, ive been having increased pain & symptoms that have been extremely disruptive to my sleep. learning to go with the flow on little sleep has been difficult. i honestly cannot wait to see my gastro.. (who says that?!)

in the meantime, a lot of deep breaths will be taken and prayers will be said.

xox,

kelly

ears of your life are the ones in which you decide your problems are your own. You do not blame them on your mother, the ecology, or the president. You realize that you control your own destiny
Read more at http://www.brainyquote.com/quotes/quotes/a/albertelli122035.html#FdWcikLGlrjTFLaQ.99
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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

steroids.appearance.self-esteem.

this may be the longest blog i will ever write, but i believe it is important for all to hear. ive had this post in my editing box for weeks:

when i am in a flare, there are many times a day that i hear comments about my appearance.  99% of my friends know i deal with a “type of condition” that causes me stomach pain and periods of time that i may be sick enough to visit the hospital for several days at a time..

upon my initial discharge from the hospital in 2004, i began what would become an on-again/off-again relationship with an physically & emotionally abusive partner: Prednisone. when i started my first large dose of steroids, i had no idea what i was in for.  all i knew to expect was a little “puffiness” and that i would start to feel better soon. the morning i woke up for my senior pictures, i remember waking up, looking in the mirror and seeing the dramatic affects of what it was that steroids really did. it was absolutely a different face than what i went to sleep with – puffy, squishy, cheeks 3x their normal size.  i remember putting on my 3 changes of clothes that were 6 sizes smaller (due to my hospitalization) than what i usually wore and trying to smile through the disappointment. secretly, i wished they were able to photoshop my cheeks. pictures to Prednisone users are extremely difficult to look at, so i appreciate the good ones (few and far between) when i am not on steroids. every fall, it never fails that our family pictures fall in the middle/end of a wild flare. there probably hasnt been a picture in the past decade i dont look absolutely miserable. (except for this one, where we all look extremely sexy)

what 16 year old girl is perfectly comfortable in her own body? add extreme weight loss & weight gain in small periods of time to the equation, as well as comments from people who feel they are entitled to let you know how they think you look and you have a recipe for terrible self-esteem. at first, all i could really do is laugh, at myself and with the people who laughed at me.. i DID look like a squirrel storing nuts for winter.  i DID look like the kid at camp winning Pudgy Bunny.  i DID look like i had my wisdom teeth pulled out. SO, i did the only thing that i could do, i gave it time. it eventually came to a point when the comments started affecting my self-esteem, and eventually pushed me over the edge when an adult crossed the line and called me “fat”.  thus intensified my struggle with weight.

like most girls, i had terrible self-image in my teenage/young adult years, especially after seeing the physical damage that crohn’s had done to my body within the first few years after diagnosis.  i had hair loss due to being on Imuran (low dose of chemo), a fat face from Prednisone, little to no energy.. i looked how i felt.  most did not notice the small things that i did, like hair loss, due to the fact that i was born with obnoxiously thick hair.  but everyone noticed the puffy face weight gain and everyone felt they were entitled to comment.

let me be frank: im (very) aware of my frequent (and rapid) weight loss/gain, stretch marks, tired, peaked eyes and “unkept” physical appearance. its taken me almost 10 full years to accept some of the things that happen as a result of my disease & the medications i must take for it in order to survive.  self-esteem is not something that cannot be fixed overnight & i will unfortunately have to work on accepting this for the rest of my life.  many people with chronic illness deal with depression & i understand why.  sometimes, the best way to deal with having no control of your health is to throw your hands up in the air and say “what will be, will be!”..  unfortunately, you have to take the good with the bad when it comes to side effects of medications & i know that all too well with Humira, but that lengthy post is saved for a later date.

i struggle [immensely] with having no control of what an autoimmune disease throws at you. having somebody verbally express how awful you look has a tendency to crush how good you were actually feeling that day!! a coworker told me today “i saw you yesterday & had to ask somebody if you were okay, you looked pretty awful”.  heres the kicker, i felt the best yesterday i had in weeks!! have i learned to tolerate more? absolutely, but im not a miracle worker! makeup does not cover some of the side effects i have no control of.. its ugly. some days i am not able conceal the amount of pain i am in. it shows: in my puffy eyes, the way i walk slowly holding my left side, how i carry myself (attitude) and as much as it kills me.. emotionally. there are times i feel like a prisoner in my own body.

living with one of the most embarrassing diseases on earth has not only taught me humility, but has made my skin pretty thick. (thank God!) on any given day, i hear many comments on my appearance. lately, they are definitely not compliments. there is a limit for how many times in a day that you can tolerate “you look awful” before excusing yourself to the staff bathroom and crying.  when you tell me i look sick, it hurts. i am sick.  i know that 90% of the time, comments like this are made to me because people want to acknowledge the fact that i am sick but dont know what to say.  i am very open about my situation, but when i am spilling my guts and being completely open & honest, i would appreciate some consideration. i appreciate that people want me to know they are concerned & may not necessarily know what to say but i prefer for some things to remain unsaid. that being said, it’s not always easy to talk about everything, despite how open i am.

there isn’t a “wrong” way to express to someone that you want to acknowledge they are sick, but there are ways to be more sensitive to the more obvious signs that someone with a chronic illness may be showing. usually, if the conversation comes up, im willing to talk about my disease and things that may be going on – not everyone is an open book with their illness, especially if it is something as embarassing as Crohn’s. if i bring it up, it means i feel comfortable enough talking to you about my disease and thats a big deal.

10 things to avoid saying to crohns/colitis patients:

1) “you look awful.” often substituted with “you look tired”.

2) “you look exhausted.”

3) “doesn’t that stress you out?” not any more than your 20 questions asking me about how stressed i am.

4) “i know how you feel.” i understand empathy, but unless youve experienced having Crohn’s or Colitis, dont ever say it. having Irritable Bowel Syndrome is not Inflammatory Bowel Disease! i once had someone at work tell me she knew she had Crohn’s Disease but just never had the time to go to the Dr. to get it diagnosed..  is nothing like having the flu. its nothing like period cramps. my guts are not the same as your guts & my guts might not be the same as someone else with IBD. we can empathize, but its belittling to lessen someones symptoms or feelings.

5) “i’m so sorry!” – for me, this is an awkward one. somehow i always end up apologizing for something that i cant help, reassuring them i’ll be okay. i never know how to respond to this, despite the number of times ive heard it.  im sorry too?

6) “i wish i had the stomach flu or something like that so i could lose some weight quickly”; no “joke” like this is funny to someone who uses the restroom upwards of 12x a day. its a very insensitive way of letting someone know you think their illness is a joke to you.

7) “youre losing too much weight.” usually women love to hear someones noticed theyve lost weight, but when you realize the negative tone to this one, its not very fun.  usually, this comment is followed by “and your eyes just look tired”.

8) “you’ve gained weight” – NO EXPLANATION NEEDED HERE.

9) “you’re going to eat that?” or “can you eat that??” if there is an appropriate way of finding out if someone is able to tolerate certain foods, simply ask ” “___, will your stomach tolerate [dish]. please dont do it in front of a crowd of people.  not everyone with IBD “comes out of the bathroom” to everyone they socialize or work with. some people unfortunately feel they have to hide it. insensitive comments feed that fire. one of the really unfortunate things for me is my gut does not appreciate the nutritional value of the GOOD things in life – lettuce, red meats, peanuts, fresh fruit, milk. my stomach prefers junk. some days, i will eat a burger!! some days it might only allow it!

10) “come on, its one drink” or “come on, its one bite” – we know our bodies best and what we are able to tolerate.  this may change daily or weekly!

it is an awful, uncontrollable disease. but considering all, ive got it good! there is no reason i shouldnt smile while fighting this disease.  i have an absolutely wonderful support system. i realize that no one is going to say just the right thing to me when i look ill, so i try to have patience when i do hear these things. im so fortunate to have found discussion boards & support groups in my area that deal with many of the same things i do. its a sucky situation to be in, but helps to be in it with other people who can empathize knowing exactly what battle you face every day.  i do the best i can to encourage people who ask questions to research & read up on it.  unfortunately, many of the people i explain my illness to also know people who face the same fight but may not know it; they may not have the support or encouragement to talk openly about it.  i know that i face many challenges ahead of me, so i do what i can to advocate for myself and others with the disease and do my best to explain some of the unique situations im faced with.  i would never want to offend anyone going through something i wouldnt know the first thing about. i do smile & i do laugh at my situation (most of the time its after the fact) but do my best to learn from every experience.