Makeup Is My Armour

This morning, my sister shaved her head. That's right. All of it. It was past her shoulder and then bam, it was gone. 

Nope it wasn't an act of charity, she wasn't donating her hair. She also wasn't trying to beat the process of chemo. Her hair was just so damaged from a couple years of a torturous routine of bleaching, dying, colouring and heat styling that it was simply ruined. She had to start fm scratch. 

Ok Jack, what does this have to do with your blog? - You all must be thinking. 

I assure you it does.

After my sissy cut off all her hair she exclaimed that she looked butch and felt naked. I don't blame her.  My sister is beautiful, but she definitely has a strong Dutch look to her, which isn't as daintily feminine as other hereditary lines. 

I immediately came to her rescue by telling her that by wearing long earrings, feminine clothes and flawless makeup that no one would question her gender identity. She agreed and felt better.

I got thinking, I use makeup in the same manor to my Crohn's. I use it like an armour to protect myself from the world. I might take up to an hour applying my makeup just to hangout and watch a movie with my boyfriend or go out for a drink and wings with a friend. Seems a bit over kill right?

Wrong.

My makeup is a way for me to feel extra beautiful. I can feel beautiful without it no doubt, but the process of applying it is like treating myself to a spa, then going out knowing I'm looking my best shifts my brain focus from being ashamed of my illness or just feeling rotten, to having a spark in my eye that makes confident enough to order a girlie drink that I wouldn't usually (I'm a rum and coke girl).

My makeup is an armour against my Crohn's. For me it says: you can take a lot away from my life but you CANNOT take away my need to feel beautiful. 

Its hard to feel beautiful when you're running to the bathroom 10x a day, or have doctors shoving cameras up your bum, or have side effects from medication that alter your appearance without your consent. But makeup is always there for me for a little self esteem boost. 

There is comfort in feeling beautiful in your own skin, whether that takes makeup, clothes, jewelry, sports, dance, or anything else.

                        Bald is Beautiful!

I hope you all feel beautiful today!

Dance Yourself Clean

"How can you get through a dance class when you're this sick?" "It's exhausting and painful, but it makes me so happy that I don't care"

Ok, I'm not this good, but you get my point.

I've danced on and off my whole life. I've done ballet, hip hop, jazz, belly dancing, folk, tap, musical theatre and burlesque. 

Dancing has been a saviour for me. Not only has it kept me in shape (sort of) it has been like therapy. 

Nothing can cheer me up like a ballet class. It's impossible for me to feel sorry for myself or frustrated with my body and disease, when I'm dancing. Even when I'm trying to nail that double pirouette or hold an arabesque for just a few more seconds, it consumes me in a way that doesn't leave room for me to be thinking about my disease. 

Trying to hold a balancing pose is like meditation. I've can't say how many times people have recommended I try meditation to help my Crohn's. Dance is better meditation than me trying to sit on a cushion and say Om. But when I try to balance in fifth position, or in an arabesque, my mind is blanker than a fresh chalkboard.

 Despite being quite ill, I'll drag my sorry butt into the studio or rehearsal space and forget my woes for a while. 

I have done this consistently for the past 8 years and it's benefitted me more than any other form of exercise or stress relief. 

When I dance I hardly feel pain, I don't feel sad. It's a euphoria that dancers understand. It's my favourite thing to do. And it helps me cope with my illness in a way that is unexplainable. 

I wish that everyone could experience dance the same way I do, it would probably help a lot. 

On My Own, With No One Here Beside Me

I've been pretty independent as long as I can remember.  A little kid I'd sit and play by myself, or read, or pick at flowers and grass. I didn't need anyone to entertain me really. I had that DOWN.

As I got older this trend continued. My parents consider me very responsible, letting me go to our local playground without them before many of the other neighbourhood parents did the same.  Booya I have cool parents. 

I was babysitting by the time I was 10, and I had my first formal employment teaching kids gymnastics at age 13. Since then I've almost always had two part time jobs. I got my learners license the day I turned 16, I was EAGER to spend my birthday in the DMV if it meant more independence.

I moved out of my parents house when had just turned 18 to go into university residence and I never looked back. 

So what's the point? You may be asking yourself. Jack blogs about Crohn's, and chronic illness and some beauty related things. What is she rambling on about????

Is the fact that I have a lot of pride. Not like in that excessive way that religion says, more just like, I don't like to accept my own circumstances. When my Crohn's flares up, I lose a lot of my independence, and its one of the most frustrating things I have to deal with. 

Right now I'm pretty sick. So I've lost my ability to walk to work. So I either have to have my mom drive me, or take a cab. 

On weekends I come home to get my parents to help me with my laundry. 

My roommate and boyfriend help me cook and make sure I'm eating. 

I'm so lucky to have people in my life that care enough to support me through this, but damn I wish I could just do it myself. I feel like a burden and a constant pain to them, and if I could, I would be doing everything on my own. Believe me I would. I hate feeling like this. I feel like a little girl that can't take care of herself and that is so frustrating. 

I swear when I'm well again I'm going to be so independent. It'll be fantastic. 

 

Bums and Booze

"Are you allowed to drink on your medication?" "Um, not really, but whateverrrrr"

Crohnies are people. That's something that should seem like a total no brainer, but people forget that we like to have fun and mess around and feel normal. Sometimes, this involves alcohol. 

Before anyone gets their panties in a knot, I'm of legal drinking age in my country. Glad we got that sorted.

As normal as we like to feel, those of us who are dealing with a chronic illness do get affected by the sauce a little differently than others. 

I distinctly remember my sister making a comment to me the morning after I had been at a party: "Your poop smells like rum" I guess there was no hiding what I drank the night before. 

I'm not saying that drinking isn't dangerous. It totally is in large and frequent quantities. But just because you have a chronic illness, doesn't mean you can't enjoy the occasional cocktail. You totally can. We just have to be a little more careful about it. 

Pretty much me the next day. 

As someone with Crohn's disease, the hangover can be brutal. Throw the dehydration, weakness, headaches, and upset tummy out the window. We get the frisky whiskies, the rum runs and tequila bum a lot worse than the average person. They send us running to the cocktail cockpit to relieve ourselves. 

Some of our meds, conditions, and bodies can interfere with our processing of alcohol. Sometimes due to a lack of nutrition, rapid changes in weight or mood, can change our experience getting boozed up.    

 

I think the biggest thing for us to remember that our bodies go through a lot on a daily basis. The poor thing gets enough stress. Alcohol is difficult for ANYONE to process let alone someone who is being bombarded with heavy medications and treatments. It's just going to take an extra toll on our bodies than other people's. 

This has rarely stopped me from having a good time chugging away with my friends. Just because I have Crohn's doesn't mean I can't have a social life! I just have to be sensible and unafraid to have a social life without drinking when I need to.

Where Will You Be When Diarrhea Strikes

"You ok?" "Yeah, I just heard some unfriendly, very ominous sounding gurgles" 

You could be here...

Or here...

Or here....

Or God forbid here...

It could be here...

I think it happened to him here...

Those girls are in ignorant bliss....

It happened to Man's best friend here...





. . .

That's the same face I make.






Hope this brought some humour to our symptoms. Have a great day!

A Picture for Fun

"I love a good pun"

My Sanctuary and My Prison

"Where did Jack go?" "Bathroom" "Of course"

I've decided to dedicate this post to my relationship with bathrooms. We have a special bond, me and the water closet. It's difficult for me to go nearly anywhere new and not become acquainted with their facilities. 

For me, the bathroom is a sanctuary, somewhere where I go to relieve myself of horrible pain. I almost always feel better walking out than I do walking in. It's a place where it's just me, and my Crohn's. It's like our together time. A time where I can just be mad at it, mad at my body, mad at my life. Where I can pray to God to smite me or at least knock me out until the pain passes. I spend more time in the bathroom than anyone else I know. I go up to 12 times a day and can stay in there for up to 20 minutes at a time. THAT'S A LOT OF TIME TO SPEND IN THE LOO! 

OH BAYBEH

Without fail, if I disappear, I have gone to the bathroom. Hey, at least I'm easy to find!

My favourite bathrooms are in fancy restaurants and hotels. They're just the nicest and cleanest, sometimes having special soaps, lotions and perfumes or real towels to dry your hands with.

I'll take it!

But in a pinch, a dirty, grimy, hasn't-been-cleaned-or-maintained-in-8-years toilet can look like a gold encrusted throne to me. 

The relief I feel when I get into a bathroom is indescribable.

I made it! I think to myself. It's like a victory every time. 

So I've painted a pretty picture of what a bathroom is to me, and all of it is true, it's just not the whole truth. 

The other half of my relationships with bathrooms is that it's my imprisoned battleground. I always have to be near one. It's like a weird form of house arrest where moving between safe checkpoints is a nerve wracking and dangerous experience. Except instead of an ankle alarm sounding, my anxiety kicks up and nothing is enjoyable until I'm back in an acceptable radius of a restroom. 

A bit hyperbolic, but accurate metaphor

And then there is the experience of actually using the bathroom. For me, this means my worst pain. I always feel relieved when I get into a bathroom because it means I made it, but then I have to put my war face on and engage in open fire. (TMI?)

The pain is so bad that I almost throw up frequently, pray for mercy, and have a difficult time keeping from screaming in pain. Not to mention that in most public washrooms the loo paper is cheap, that the wiping is rough and unpleasant. 

When I feel the pain coming on, I also feel the dread No, please no. It's only been 45 minutes. I don't want to go back in there. No. It's going to hurt. No. Please no. 

And if I forget my iPhone? I don't even want to think about that! 

Pain Management

"You ok?" "Yeah, I'm just in a bit of pain"

I deal with a lot of pain. My worst pain comes right before I need to use the bathroom and while I'm in the bathroom. My worst pain is in my left lower quadrant. So essentially on the left side of my belly just under my belly button. Ouch.

I also get lower back pain, upper abdominal pain, lower right quadrant pain. 

Mmmmm comfy.

My pain lasts for hours.

So? How do I manage this?

Good question.

I find that heat is one of the best ways to sooth the burn. Ironically. 

Heating pads and hot showers are daily pain management techniques I use. which is good because well, I love to snuggle and I love to be clean.

When heat isn't enough we call in the pills.

Diss stuff. 

 Tylenol muscle and cramps or whatever it's called. It's my go to. I use it as needed. My GP told me to take as much tylenol as I need. SO... I do.

When that's not enough?

Well, I have a small prescription to a pretty strong pain killer that I take when the pain is completely unbearable. However, when I take it I'm not really supposed to drive, or operate heavy machinery (Do hair tools count?)

I never used a pain killer before I transitioned out of the children's hospital. No idea why, but that's just how it was.

I can't tell you how many times I've been told that I need to take up meditation to deal with my pain. I'm not hugely for this. 

The last thing I can do when I'm dry heaving my empty guts from the pain I'm feeling it try and clear my mind of all thoughts. Am I right?

Regardless, pain management is a daily thing that I do just to keep truckin.

Comment below with your pain management techniques if you have any!

Losing the Light

"No. I won't do it. Nope. You think you can get me on there. You can't"

In my last post, I casually mentioned that my low blood pressure caused me to faint a couple of times last summer.

Even though it was pretty dangerous and not at all good for me, one of the situations is kind of funny when I look back on it.

Thank god I have the ability to see humour in my life....

I totally am not this poised when I faint.

 So here is the story of me fainting in a hospital. 

Last summer as part of my over achieving lifestyle, I was volunteering at my local children's hospital as a research assistant in the pain research lab (ironic I know). 

On this particular day I hadn't been feeling well to begin with, but like the trooper I am I put on my dress and heels and went in anyway. 

I was with another member of the lab down in the I.T. department, trying to get my hospital email account set up when it started to hit me. At first I just felt a little weak, so I thought I would be ok as long as I got to sit down relatively soon. 

I didn't. The lady working in the I.T. department was quite the chatterbox and kept talking...

My head started to swim Oh god. I thought. This is it. This is it. This is the end!  

I felt sick to my stomach and crouched down on the floor, luckily my co-researcher saw that I was less than feeling well and got me a chair. 

After I sat down I deteriorated, I got really dizzy, I was sweaty, shaky, the typical symptoms of being about to faint.  

Then, they called a Code Blue. In our hospitals this means cardiac arrest. It's what they call when someone goes unconscious. I wasn't fully out, but I was about a hair away from it.

Doctors came barreling in with a crash cart and started bombarding me with questions. When you're about to pass out, it's hard to answer questions about your medical history. 

They asked me if I was diabetic, and I couldn't answer, all I could think about was how my ex-boyfriend was diabetic and how I hated him. Nice Jack. 

Finally, I managed to eek out that I had Crohn's, and I think things started to make sense to the crash cart team. They kept taking care of me, and finally brought me back to a full conscious state. Then they asked me how old I was. I was 18. Too old for the children's hospital!

It's not my fault. I'm kind of small, I'm only 5'2 (on a good day), I have a small frame (I'm a lady, I'm not sharing my weight) and I have a baby face. So they had assumed I was a child patient...WOOOOW.

So next they called me an ambulance to bring me to the adult hospital. I was unaware they did this until the paramedics showed up. Rather than being grateful and concerned for my health, I had a .... different reaction to this. 

Ambulances are expensive, my Oma has had to take a couple and it's been a lot to pay for.

My initial reaction was complete and utter refusal. I was borderline rude to them. "I'm not getting in. You can't make me. I'm fine. I'm not getting in there. I'm not going. I'll walk. No. I'm not getting on that ambulance" 

Truthfully, I was a little kooky from almost passing out, and wasn't thinking very clearly....

They ended up having to call my mother who forced me to get in the ambulance after I almost passed out again while arguing with the paramedics. 

I got to the ER of the adult hospital and dealt with it all, but when looking back, I must have seemed like a total nutcase to the paramedics. 

I hope I'm not the only one who has had crazy experiences like this. 

To the paramedics....I'm sorry. 

Other Than My Guts...

"You need to eat more salt" "What?" "You need more sodium, just drinking water isn't going to solve anything"

So, welcome to my life of many complexities. That's the delicate way of putting all the poopy secondary problems my Crohn's causes.

I've been over the initial disease symptoms and stuff before here, I'm pretty sure it's clear. If not, check out the post that I did on them here. 

But this post gets into all of the OTHER delicious complications my Crohn's has so graciously bestowed upon me. Let us delve into it, shall we?

1. Eye Problems

Thank god I'm not this bad.

•  Crohn's legitimately causes it, so I had a hard time debating whether or not to even put it in this post, but alas, here it is. 
• I've experienced episcleritis. That's essentially inflammation of the white part of the eyes. 
• What do they treat it with? Prednisone and ibuprofen eye drops. All I could do was laugh at this. Yet again, I met the bane of my existence  prednisone. Luckily no side effects were experienced from the drops. 
• The worst part: my eyesight changed. I went from having better than 20/20 vision to having astigmatism. I got glasses. Big whoop, I'm over it. 

2. Blood Pressure Problems

Just like me, fainting away.

• I'm pretty awesome, I've got low blood pressure. Ok, not so awesome, it's a bit too low. So low that last summer I ran into a bit of a problem with fainting. ....in public.....alone. My pressure would drop, and I would faint. 
• THAT WAS A PROBLEM MUAH HA HA. In all seriousness, it wasn't good.
• What do they treat it with? Salt and watah. The salt makes you retain the fluid, and the water is the fluid you retain. This increases your blood volume and keeps your blood pressure up, ergo, no fainting. Yaaaay!
• The worst part: fainting. Duh. 

3.  Low Nutrition

Disgusting.

• I eat healthy. I try to eat a variety. But when your gut is inflamed it's really hard to absorb all the nutrients you need, so as a result, my nutrition is out of whack. I have low magnesium, low calcium, low vitamin B12, low vitamin D, low blood protein, low potassium, and who knows what else. I snuck a look at my bloodwork when my nurse left the room last week and let me put it this way, there wasn't much in the "normal" range.
• What do they treat it with? Gatorade for low potassium, protein shakes for low protein, supplements for magnesium and vitamin D, B12 shots, chewable calcium, and a chewable multivitamin to try and cover my bases. There's hardly room for food in there...
• The worst part: protein shakes. Those things are NASTY. 

4. Hair Loss

A sheer veil...

• Whether it's from treatments (low grade chemo), or lack of nutrition I've noticed pretty substantial hairloss since I was 15. My hair is strong and healthy, just fine to begin with and now it's thin. IT doesn't fall out in clumps and I'm not bald, but I do have some, less than hairy spots on my scalp. I don't have a thick curtain of luscious locks, but rather a sheer veil of satin threads. I work with what I have.
• What do they treat it with? Nothing, this really isn't at the top of my priority list right now.
• The worst part: it just doesn't look nice. 

5. Recurrent Yeast Infections

• I know many of you reading this saw that in red capitals and had a mini panic attack. But really, I'm blogging about having a disease that gives you violent diarrhea, I'm not too embarrassed or too good to talk about yeast infections. 
• I get them pretty much every time I go back on steroids or a new immunosuppressant, which totally makes sense because your immune system is knocked down, your natural yeast goes a little crazy for a while. It happens. I've had them in my vagina, duh, but i've also had them on my skin, because EVERYONE has yeast, living ALL over their body. Go figure, and get over it. 
• What do they treat it with? I just use the not brand name version of mono stat 3 day suppository pills, or for my skin, treat it with Loprox lotion. 
• The worst part: The fact that you're going to the bathroom so much already just means you're extra sore when you wipe. I suggest investing in some Charmin Ultra. 

These are the things that have really affected me physically from Crohn's without being Crohn's. 

What else do you guys deal with?

This One Time, In the Hospital...

"Oh! I'll come back later...."

Consider this post #2 about dating with a chronic illness. As a teenager. 

People have a tendency to forget that people with disabilities and people with chronic illnesses date people, and that involves expressing your affection in a, ahem, physical, ahem way. 

When you stay in a children's hospital, this gets to a whole new level of weird.

When I was in my final year of high school I had a boyfriend and we were together for a year.

I was admitted for a couple of weeks twice while we were together.

One time, my boyfriend came to visit me, and all was quiet so we snuck some good snogging time. You know, played some tonsil tennis.

Sure enough, a nurse came barrelling into my room, caught us sucking each other's faces off. 

Needless to say she made an awkward, abrupt exit, only to return 10 minutes later with her cheeks flushed with embarrassment and my shit-eating grin beaming up at her from my bed. 

It's ridiculous to think that a teenager will not think of engaging in dating and sexual activity when they have a chronic illness or disability. That's a silly naivety on adults' part. Adolescents are teenagers first, patients second. 

The same goes for drugs and alcohol, but that's another post for another day. 

Fever in the Heat

"I have a fever" "Take some Tylenol and try and get back to sleep"

Last night I had a dreadful experience. Somehow, I developed a fever in the middle of the night.

So? 

People get fevers all the time, it's not that big a deal. Would be what someone with a healthy body might respond with to that statement. But for me, fevers are really dangerous, not to mention as uncomfortable as Satan. 

I'm triple immunosuppressed. This means that I have three very powerful medications working to suppress my immune system in order to try and control my Crohn's disease. So when I get a fever, something is wrong. Very wrong.

I woke up last night at around 2am with a skull crushing headache, an unhappy body and a delirious mind. I didn't know if I was hot or cold, my apartment was hot, but I seemed to have goose bumps. I didn't want my sheet on me, but I didn't want to be bare either. I was so confused I couldn't really figure out that io had a headache. I know it sounds stupid, but I swear, I woke up by the sounds of my own moaning and calls for my mother.... Way to be a grown up Jack. 

Eventually I got myself together enough to drink some cold water, text my parents and take some Tylenol. Unfortunately, fevers feel worse before they feel better when you take Tylenol. I started to get really hot. Before I knew it I was contemplating having a cold show at 3:30am. I'm pretty sure my roommates wouldn't have appreciated that. 

It doesn't help that it's been above 30 degrees here. Who gets a fever in this kind of weather?

I think the worst part of it all was that I was so confused and delirious from my fever that I was scared. That really sucked. 

Anyway, I've been feeling like crap, obviously, which is why my posts are a little less than on schedule right now. I'm working on it guys.

PS. Any advice on how to deal with fevers would be much appreciated! 

Chronically Ill Romance

"Have you told him yet?" "No, I'm going to though"

Dating is complicated to say the least. Dating when you're a teenager is messy at best. Dating when you're a teenager with a chronic illness can be a downright disaster.

But it doesn't have to be. 

This isn't about me giving advice. Not this post anyway. Consider this issue one, of about a novel long amount of writing that I could do on this subject. This post is simply to validate how freaking difficult it is to engage in a relationship when you have a chronic illness. Just to start it up and sharing my experience with just that. 

First of all, you have to consider the original relationship you have to the person. Is it a friend you've had for a while whose been there through some ups and downs? Is it someone else with a chronic illness? Is it someone healthy that you just met? 

So many questions run through your head when you start thinking that you want to spend more time with this person in a romanical way, other than the whole: Oh, does he/she like me back? you have to think: Can they handle this?. 

When Kelso sees Jackie sick for the first time, he kind of freaks out...

http://www.youtube.com/watch?v=5di9kDD4uIw

Hopefully, it's not as dramatic as this.

The truth is, when you have a chronic illness, you come with a certain level of baggage and when someone wants to be part of you life in a way that relationships tend to be, you can't hide the realities of your illness from them for very long. Or, at least I can't. 

How do you tell them that you have an illness? I don't really know. 

I'm no expert. I'm almost 20, I've had approximately 6 relationships that lasted either 2 months or longer and I'm currently in my 7th (and VERY HAPPY!). I've had a lot of experiences with dating. Some guys could handle it, some couldn't. Some wanted to be involved, some didn't even really acknowledge my illness. Some wanted to take care of me, some wanted to support me in taking care of myself. 

It was a situation that changed with every relationship I had. 

The ones who got scared off and ran away obviously weren't going to work out. Funny enough, the ones that were the opposite were never going to work out either. The ones that wanted to take care of me threw off the balance of the relationship, making less of an equal partnership. The ones who didn't really acknowledge my illness dated me when I was healthy, it was fun, but I felt like the relationship wasn't completely honest, because I knew it was only a matter of time before I got sick again, and then they would be tested. Luckily, the relationships fizzled out before my remission did. 

Noah loved Ally, even when she got sick.

The longest relationship I had was with a boy who had type 1 diabetes. We really bonded over having chronic illnesses and it lasted for about a year. But there were flaws in that relationships that eventually caused it's end. Despite the connection I felt with him over our health issues I don't feel like the only way I can have a successful and understanding relationship is with another person who has a chronic illness. I think that's a bit unfair to healthy people, they deserve a bit more faith.

Consider this post 1 on this topic. I'll return to it. Probably several times.  

 

Seamless Travelling with IBD

"I have a medical condition, can I use the first class bathrooms if I need to? They're a lot closer"

I'm on a bit of a travelling theme, going to Disney took a lot of preparation, thought, planning and strategic packing for me to have the best trip possible.

I think, I have almost perfected flying with IBD. This is my guide to seamless travelling with Crohn's. 

Your Carry On:

1. Bag with Multiple Compartments
• As for any traveller, the separate compartments keep you organized in times of stress and hurry.
2. Change of Underwear/Shorts and a Ziplock Freezer Bag
• It's probably the worst reality of IBD, but accidents can happen. Flying, there are limited bathroom situations and you might not make it. Bring a change of clothes and a freezer bag to seal the soiled garments (and their smell) in. Then throw it out. No pair of underwear can be worn again after it has been tainted with that kind of memory.
3. Charmin's Flushable Wipes Travel Pack
• Public washrooms almost always use extra cheap toilet paper which can do more harm to us IBD sufferers than good. These super soft wipes clean you well, do so gently and they are safe to flush!
4. Hand Sanitizer
• Between children, old people, and recycled air, planes and airports might be the best place for germs and viruses to thrive. I suggest sanitizing after touching public surfaces. You never know what's living on them. 
5. All Your Meds in their Original Containers
• Even the ones you don't think you'll need or that you don't use regularly. Murphy's law is that if something can go wrong, it will, so you will probably end up needing your weird eye drops, or nasal spray.
6. Plane Pillow and Blanket
• Comfort is my #1 priority when I fly. I find major comfort in soft material so when I fly I have as much of it as I can. A blanket because it can get cold on airplanes and the pillow so I don't rubber neck when I pass out asleep. 
7. Cellphone and Charger
• The charger is especially important to me because I find that in new locations, my phone dies extra fast when searching for wifi networks. I need my phone to be charged so I can let my travel companions that I'm in the bathroom. Duh.
8. Minty Gum



Best Cap Type Ever

• I don't actually chew the gum. I just find that the minty taste can calm my stomach, so I tend to just suck on it and mash it up with my tongue in order to refresh my mouth. I avoid chewing it because it makes you swallow air and that ends up causing pain.
9. Water
• You have to buy it past security, but water is 100% essential. No IBDer can afford to get dehydrated, or not have something to take meds with. It's best if you can get a bottle with the top like the one in the picture, because you don't need two hands to open it. 
10. Kleenex
• It's just a great multi use product and comes in very convenient packaging for travel. I especially like to use mine to blot my face if I sweat while I'm in pain.

Accommodations You Can Get

There is a lot more that you can get to accommodate your illness while travelling than you'd think. You just have to ask. 

1. Use of special bathrooms. 
• I just asked the flight attendant if I could use the first class bathrooms if I needed to, on account of a medical condition, and without hesitation they always permitted me. Go figure.
2. Downsized Medication Containers.
• Sometimes when I get medications I get a couple month's worth of pills at a time. These come in huge containers. I went to my pharmacy and asked for a small pill container with the same label so that I could save space in my carry on and they happily obliged. It saved so much space. 
3. Use the Chair
• If you're tired or in pain take a deep breath, realize that your illness does not define you, and take a seat. Generally you will feel better and get a little bit better treatment if you use a wheelchair in airports.

Take Responsibility

Your illness isn't your fault but it is your problem and your responsibility. You have to do what you can to keep yourself healthy.

This might be a TAD overkill

1. Don't Experiment
• Travelling is NOT the time to be adventurous with your food choices. I learned this the hard way. Stick like glue to foods you know won't set your disease off. Personally for me this means low fibre grains, meats, and water.
2. Dress Appropriately
• It's ok to want to be stylish or professional looking, but if you're boarding a 10 hour flight, don't wear something that presses on your abdominal pain spots. Make sure you dress comfortably, with stuff you can easily use the bathroom in, walk, and/or sleep in if need be.
3. Take Your Meds
• This is just plain common sense. It doesn't matter that your routine is thrown off. You need to take your meds to stay healthy and enjoy the vacation. 
4. Sleep
• You can't stay up all night. Or maybe you can, but I can't. If I don't get enough sleep I get this horrible hangover feeling and it's harder to make good choices about activity and food. Sleep is almost like a medication.
5. Be Realistic
• You may not be able to do a 6 hour hike up a mountain. You may not be able to go wind surfing for an entire day. You may not be able to sit through a Tibetan monk meditation session. Try to be realistic about what you can do so you don't burn out within the first two days. 

I hope some of this helped my fellow IBDers, I wish someone had given me this advice before I went on my trip. 

If you have any other suggestions let me know! I'd LOVE to hear them. This is the first time I feel like travelling is even plausible for me, and it's so exciting!

A Chronically Magic Vacation

"Can I get the chicken fingers and fries?" "Kids or adults?" 

I just got back from an amazing family vacation. That's right. I went to Disney World. It was a dream come true. I did rides, saw princesses. experienced countries in Epcot, stayed at a resort, I couldn't have asked for a more fun time. Unless of course I could have been healthy during it.

Despite the fact that I prepped for the vacation by doing a course of IV steroids for preparation, staying on a good 50mg of prednisone each day. I took my medications religiously, but yet somehow I got sicker while I was down there. 

The first couple of days I went ham. I walked up to 5-6 hours a day, stayed out late with my dad, and had a blast. Doing this, I burnt out quickly. by the third day I started getting so much pain, having to use the bathroom a lot and got totally exhausted after only a few minutes of walking. After a particularly bad episode of pain only at about 9am, my family convinced me to allow them to rent a wheelchair for me. I wasn't pleased. I hate it when my disease can impact my life like that. 

Being sick in the most magical place in the world, was quite an experience. As much as it sucked, there was an element of humour around the whole thing. I turn 20 at the end of July (I know, big deal.) but due to my baby face, short height, and small stature (a lot of which is caused by my Crohn's) I look a lot younger than I am. The most recent guestimation of my age was 14....

I milk it and I'll appreciate it when I'm older. 

However, put me in a wheelchair, in Disney World, add on my young look, pale/sickly complexion, and the tiny tiara I stuck in my top knot of thin hair, I was treated literally like a child. Employees gave me sympathetic smiles, wished me to have a "Magical Day" at every corner, and held out giant push Mickey hands asking for high fives... I was tickled that they thought I was so young.

I highly doubt if I actually looked 20 years old, or at 16 but healthy, they would have talked to me in that sing song overly peppy voice. I didn't mind it though, they were doing their job, selling the magic. 

And despite the fact that I couldn't walk for over half the vacation, I still had a magical time. 

I'll be back to the daily posts now!    

I'm a Terrible Person

"I'm sorry, but I just can't listen to him complain about having a cold while I have a tube up my nose"

I've been called a terrible person a few times. I understand why. It's probably my lack of affection for infants and children, my ability to see humour in the darkest of situations and my dirty mind. I swear these are just some of my personality quirks, I'm not actually a terrible person, people just jump to conclusions when they hear you don't like babies. 

However, there is something about having a chronic illness that makes me question my ability for sympathy for when healthy people get sick. Maybe I'm the only one who feels this way, but I find it so hard to feel bad for someone who complains endlessly about a light cough or sore throat. I find it borderline enraging when someone proclaims they can't get out of bed when they have a headache. 

Sorry about the rough language.

I don't understand why they can't push through it. Or why they choose to complain to me about it. I take more medication in a day than they will take the entire course of their cold. I have higher levels of fatigue on a daily basis than they do when they've pulled an all-nighter writing a paper and have a headache. I have more pain than them from bowel movements I have 9 times a day than what they feel when they finish a workout. 

The thing is, I want to be sympathetic. I really do. I just have a really hard time with it. When you have a chronic illness, you learn how to be sick. You learn how to do every day things despite your pain, your fatigue, and the limitations of your illness. You can't take days off because you feel sick. If you did, you'd never work or go to school or have meaningful relationships or hobbies. It kind of sucks that we have to do this, but honestly, it's better than being completely incapacitated and unable to participate in life. 

I know viruses suck. I do. I know workouts hurt. I know you can injure yourself lifting things. I know laryngitis is horribly inconvenient. But I actively have to restrain myself from saying "Suck it up, I go through worse than you", good thing I have at least that much self control. 

I'm sorry to all the people I haven't been sympathetic to. It's not you, it's me. 

The Three Levels of Explaining

"Have you ever gotten a canker sore?" "Yeah" "It's like that, but all through your digestive system and all through the layers of it" "Damn"

When you've got any kind of disease or condition that isn't plastered all over the media, people will generally ask you "What is that?" when you mention it. It's not their fault. But, finding a way to explain your illness without grossing them out or taking up their whole day is very an art form that us chronically ill folks have to master. 

The quotes above are typical of me giving a super short explanation of what Crohn's Disease is. That's what I tell people if I'm rushed, or don't really want to get into the details. It's like my Level One definition.

Level Two explanation involves me saying: "It's an autoimmune disease, so essentially my immune system attacks my digestive system and causes it to have ulcerations. It gets really inflamed and hurts a lot". 

I only give the Level Three explanation when people push for details and ask what symptoms are like. I don't usually hold back, they asked, they want to know right? Ok, probably not in the graphic detail I give, but why should I hide the truth when they ask outright for it?

I say: "Yeah, you get really tired, have to use the bathroom a lot, have a lot of pain, a lot of diarrhea, lose blood, don't feel like eating, and generally feel really shitty. You have to take a lot of meds, especially with terrible side effects". 

People usually don't ask much more after that. Either that or they ask how it's treated, which generally I enjoy talking about.  

As a person with a chronic illness, you end up memorizing the phrases that work the best for you. It's kind of robotic, but so helpful in the long run.

 I hope all of you guys reading have your explanations prepared!