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!

That Mind Body Connection

"I just loose so much muscle mass when I get sick, and my cardio disintegrates. You spend a month or two in bed and you have to start your fitness from scratch."

I can't tell you how many times I've set a fitness goal and failed to achieve it. I've tried to train to run a 10k more times than I can count. It's ridiculous, and a real hit to my ego. The only thing that I have managed to keep up is dancing, ballet, being my favourite, and even that I've had to take long hiatuses from. 

I try. I really do. 

The truth is that I have moments, like this morning, when I was doing my dishes from last night at 10am this morning, where I think like a healthy person: man, I should really be out for a run. There is nothing I would like more than to be able to run a 10k race with my dad (he's been a runner for years), or go rock climbing with ease, or do the splits. I have so many fitness dreams it's unreal. 

But then I remember, I just got my chest IV out yesterday and finished a 5 day stint of solumedrol (IV steroids). I was too tired yesterday to walk home from work. I had crippling pain two days ago that left me incapacitated for about 6 hours. I don't think a run is completely realistic at this point, it will be, but I have to wait for my body to catch up to my mind.

It's frustrating. I'm a bit of an overachiever. Last year I started a running club in my university residence and I participated well into a a bout of pneumonia. That's not exactly good. 


As soon as I become a little bit more healthy, I start trying to get fit again. I'll start small. Just walking. Then I'll add in some strength training. Go back to dance classes. Try running. Stay at the gym longer. When I feel 100% I'm very active. I love it, it makes me feel good. But I've only had about 9 or so months of true remission since I was diagnosed with Crohn's...8 years ago. 

I hate feeling like I'm starting over. I hate feeling like I'm lazy because I don't exercise regularly. I hate feeling weak. I hate getting winded by simple things like walking up a flight of stairs. I'm not overweight. I just loose my cardio so quickly. It's not my fault. People look at me like I don't care about my body, that I don't put effort in. It sucks. 

I would if I could, bro. 

A Different Fear of Flying

"I'm going on vacation with my family" "I hope you're feeling 100% by then!"

This WILL be my family. Awww.

I fear travelling and I blame it on my Crohn's disease. I love being in new places, seeing new things, experiencing a different culture (ok, I'm going to the states from Canada, but you'd be surprised by the difference). But constantly being in fear of getting sick or, even more pressingly, needing to be by a bathroom at all times in a foreign place makes me beyond anxious. We've been planning our family vacation to the south for about 10 months, and I've been having anxiety dreams about it for the last 4 of those. 

There are the regular travel stresses: airport security, packing, just getting where you need to be when you need to be there. But when you have an illness you have a TON of other things to be concerned about. 

This is pretty much me. 

I have to make sure all your meds are in their original containers and they take up a LOT of space in your carry on so you have to account for that.

I have to be careful about metal detectors if you have anything not quite human inside you, i.e. my portacath. I get searched just about every time I fly. 

I am fearful of all the germs and recycled air that stays on the plane. I can't remember the last time I flew and didn't pick up a virus. 

I just got a new medic alert bracelet so that if I faint or something in the land of the free whoever attends to me will know what's all going on. 

I acquired anxiety medication for the flight because being in a situation with limited bathroom access pretty much makes me panic.

 I won't eat before going on the plane. I'm probably going to settle in for about 6 hours without food, which sounds bad, but is SO much better than awakening the beastly colon. 

Except put the meds in original containers.

It's just funny because I'm afraid of flying, but for totally different reasons than the normal person. 

PICC Lines

"It goes all the way up to a vein in my shoulder" "Oh my god. I couldn't deal with that"

As a young patient, I was admitted to the hospital several times for bowel rest. Basically this meant getting TPN or total parental nutrition. IV food. The veins in your hands, wrists, and forearms are too small to accept this broken down supplement, the particles are far too large. However, the veins in the front of your shoulder ARE big enough. In order to access these veins they gave me peripherally inserted central catheter (PICC). 

How this works, is in the crux of your elbow, they start an IV, but not just any regular IV. These IV tubes are a good 30cm long. By using a guide wire, a doctor threads it up into the larger vein in your shoulder, and BOOM. You've got a PICC line. Doesn't sound so bad right?

Well, my experience (now when I look back on it, was quite funny) was less than fun. 

She didn't actually look like this, but this is how I imagine her

The PICC insertions were done by this one, old, Polish doctor. She was great at what she did, but holy crap she was scary. She also only did the insertions after her day's work...which ended up being at about 11pm. So there I am, 12 years old, extremely ill, dehydrated, and they're telling me I have to be awake at 11pm to get a giant ass needle stuck up my arm! Lovely. The during my first PICC insertion I fainted. My mother tells me that the doctor was yelling at me in her thick Polish accent "NO PASS OUT. STAY AWAKE. STAY AWAKE." Each one of my insertions lasted between 1 and 2 hours. After they are sure the PICC is in, they send you down to the x-ray department to make sure it's in the right spot. I went down for my x-ray, and during my x-ray I fainted again. I'm obviously good with needles, eh?

That's basically the story of my first two PICC insertions. The third one went a little differently. It began like the first two, anxiety, needles, prodding, guiding. It seemed to last for hours. Truth was it did. It lasted a full two hours. What happened was when they inserted the PICC line, they found it hard to navigate the veins in my shoulder, they kept trying but the guidewire got caught in me. I'm not sure how this happened, why this happened, or how they solved it. I was a bit preoccupied trying not to cry or faint. This time they were unsuccessful. 

The next day I was sent down to some sort of imaging machine where they injected my veins with radioactive dye so that they could figure out a path to send the PICC down. They shot me up full of that dye only to discover that my veins in my shoulder are so damaged from the first two PICC lines that now it looks like I have balls of spastic wire instead of veins. And that my friends, was the end of my experience with PICC lines. 

Pretty much my veins right here. 

Don't Look Sick, Even Though You Are

"You look great!" "Thanks! Looks like the pounds of makeup I dumped on my face are working!"

I don't actually feel better when I'm all dolled up. But at least emotionally I do, and I feel pretty. That to me is pretty worth it. I have a couple of tricks to distract the eye away from the physical signs of illness, because people typically admire health and equate it to beauty (I don't always do this, sometimes I love the way I look when I'm tired and pale. I know, I'm weird). So, here they are. 

Have at 'er:

1. Conceal, don't reveal.

She looks very optimistic...

• I'm pretty sure you all know what I mean. Constant fatigue leaves us chronically ill folks with the nastiest of under eye circles. There's really no way to deal with this other than to slap on that concealer. If you have bluish circles, choose a concealer with a salmon or peach tint, if your circles are reddish, choose something with a yellow base. 

2. Culla. 

What a lovely healthy glow!

• If you don't have any friends from the hood, say that word out loud. Yes. It means colour. I'm talking about blush. A good pink, peach or coralcoloured blush without too much shimmer can help keep you from looking like you've lost blood (you probably have lost blood).
  
  
  
  
  
  
  

3. Scrubadubdub

That's right, you're happy.

• The only way to get rid of dry flaky, dead skin is to take it off. Nothing else can save it. Invest in a good exfoliating scrub to use in the shower. Think of it like shedding your dead, sick, skin to make space for new, healthy skin. 

4. Moistia

• Again, pronounce it out loud. Just like Gammy Num Num from that horrid movie "The Master of Disguise" give your skin some moisture. Drink water and load on some lotion. Dry skin makes you look dehydrated (you probably are dehydrated). 

5. Shine

Look at those luscious locks!

• Your hair. I always spray the bottom half with a nourishing shine spray. Your hair becomes dull when you don't get enough nutrients, so I pretend like I do, by spraying fake health all over me!

6. Layer

This might be a TAD much. 

• Whether you've put on weight or lost it, layering helps you control your body temperature, and hide whatever body your health is giving you at the moment. 

7. SPF

Lather up!

• I don't know why, but a ton of medications make people very sensitive to the sun. I know a lot of people who argue that a tan makes you look healthier. Ok, a tan. But I'm half dutch the rest irish and french. I don't tan. I burn. Like chocolate chips. Or a leaf. Or human hair. Something that burns easily. Just protect yourself from the sun. It's better. I promise.

8. Vampy Pout

Dem lips. 

• I'll be honest, I don't even know if this works. But if i'm feeling really sick and really down on myself I put on a dark lip colour. Whether it's red, plum, or a deep rose, I feel like the boldness of the pucker just catches people by surprise and for at least a second they're taken aback and forget I look like crap in every other respect. 

Whether it boosts your confidence or literally erases your signs of illness, any tips are useful. If you have any share them below, I'd love to try 'em out!