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!

Exiled by Physics Kids

"I'm having physics people over." "Oh god."

I'm sitting in this little cheesecake shop that I crawl through a hole in the fence in my back yard to get to. I've got a cup of RedRose tea to my right, and the tiniest little milk pitcher beside it. They're playing an easy listening soundtrack made up of scratchy Norah Jones tracks. What I'm trying to say si that this is basically the scene where my true love would walk in the front door and I would either trip or spill something on him and it would be the most magical meet cute ever. Right?

This is probably more what I would look like...creepy. 

Not really. I'm here because my roommate is having friends over and they all work together doing physics things, and well, I feel pretty out of place around them. It's all good. I prefer my artsyness. I just figured it would be quieter here. It is. And I would have less people to beat to the bathroom. There are. 

The truth is, I'll sit here and blog until I either get bored or sore or my laptop runs out of power. Which won't be long at this rate. I won't be swept off my feet by some suave stranger or charmed by some quirky nerd. It doesn't matter. I have an awesome boyfriend. I'm just day dreaming now. 

I'm still dealing with this whole IV in my chest business. I realized as I was walking around my town today with my IV in my chest, sweat pants and flip-flops I looked like a successful code yellow (missing patient). Haha suckers. I was on my way to my infusion. 

Just imagine him with an IV in! The resemblance is uncanny.

The poor seating hostess at this cheesecake place looked rather alarmed when I showed up though. I'm always confused as to whether or not I should just tell people, to relieve their curiosity, or if I shouldn't, because people are unpredictable, and some can't even handle talking about needles. 

This brings me to the point of feeling the need to protect people from my chronic illness. That's a whole nother blog post, or several all to itself. 

So I'm just going to sit here, sip my red rose, and pretend that I'm not sad I couldn't find anyone to hang out with tonight. Sadness. 

I Have an Unsexy Illness

"Crohn's isn't sexy." "And other illnesses are?" "Yes! People walk around proudly supporting breast cancer with those bracelets that say 'I <3 Boobies'! But who would want to walk around supporting Crohn's and wear a bracelet that says 'I <3 Poopies?'"

There is a quote from John Green's infamous book The Fault in Our Stars. It is "illness repulses". I find this hilariously ironic, considering the characters in the book are diagnosed with cancer and are both described as being fairly attractive. Cancer is probably one of the sexiest diseases out there. I'm not saying it isn't a terrible diagnosis, it is, and I wouldn't wish it on anyone, but it has been romanticized by the media and publicized fund raising efforts. 

When's the last time you heard about a person with an unsexy illness being featured in a magazine or TV show? I'm talking about people who's illnesses are uncomfortable to talk about. Like, endometriosis when a woman's uterine lining literally falls out during her period? Crohn's disease where you spend more time running to the bathroom to experience bloody diarrhea than you do at work? or Kidney diseases that are treated so aggressively with steroids that the patients appearance is so warped by side effects they hardly resemble the people they were before the medical therapy? People who gain weight from their treatment, or get facial hair, or drool, or become incontinent, or who spend so much time in bed they get sores, or their muscles atrophy? Or people with mental illness who say inappropriate things or get aggressive or maybe don't say anything at all?

At least Mother Monster loves us. 

When I was searching for images for this post I typed "ugly disease" into google and the SECOND image that came up was this: 

Ouchey.

 I knew what it was, but I followed the link anyway, sure enough, that right there,, dear friends is a Crohn's Colon. We are LITERALLY THE GIVEN EXAMPLE OF AN UGLY DISEASE. Sadness.

It's sad that our society is so shallow that we can even discriminate attractiveness within a tragic category as chronic illness and disability, that is sad. The even more enraging thing is that even though I pride myself on being an assertive advocate for my health, I feel inadequate. Like I shouldn't be proud of having Crohn's the same way a patient with breast cancer can be. Why? Because my most prominent symptoms happen in the bathroom? Ouch. 

Why can't Crohn's be portrayed like this instead?

I don't have any answers for this, it's just some food for thought. I just wish our society wasn't so obsessed with the sexy allure of certain conditions while others get next to no exposure.   

My Super Power: Invisibility

"You look good!" "You say that to me no matter what I look like" "No, you actually look good!"

The phenomenon of the invisible illness is no stranger to many who suffer from chronic illnesses. Despite what a lot of activists may say, having an invisible illness is BOTH a blessing and a curse. 

Yes, it sucks that you look healthy despite feeling shitty on the inside. Yes, it blows that you have to literally convince people that you have a serious disease, syndrome or condition that literally qualifies you for disability status despite the fact that you're not in a wheel chair or emaciated or bald (hint hint nudge nudge cancer). Yes, it sucks that even better, sometimes,  you can't explain a cause, reasoning or cure for your illness.

It can be a HUGE advantage to have your super power of invisibility sometimes. This is how I choose to look at it. The blessings of having an invisible illness are almost as plentiful as the negatives.

Here is a list of positives to help keep the silver lining on your invisibility cloak:

1. You don't have to tell anyone what you have or why you have it if you don't want to. I'm a person that values the ability to choose who I share my business with and who I don't. 
2. You are not immediately stigmatized by your illness, you have the power to present yourself as a healthy individual, and take full advantage of NOT being labeled by your illness. This is especially helpful for things like job interviews, school applications, and first off meetings, I know my friends who suffer from mental illness feel me here.
3. When you're healthy, you're really healthy. On the outside too. People who have chronic illnesses that impair their mobility can experience healthy times too, but they still display their illness on the outside much like a pregnant lady displays the sex she had 8 and a half months ago. 

But what happens when you lose your super power? I know how that feels. I'm currently going through daily steroid infusions to get me in tip top shape before I go on vacation with my family (YAAAAY!!!!!) but it means that they accessed my portacath and leave my IV in for 5 days. I live in a city where I walk everywhere, and it's hot right now. Yesterday it was 31 degrees Celsius (88F) with humity of 69%. So it wasn't like I was going to wear a turtle neck to cover my chest IV. Walking down the side of the road and literally having everyone, guys and girls check out your rack, oops I mean, IV site, makes me feel strangely naked. I'm not ashamed, or shy about having Crohn's, but I dislike the sympathetic smiles they give me when they meet my eyes, or their furrowed brows as I imagine them evaluating their day and thinking "Ok, my life isn't so bad". It's weird. I miss my invisibility. 

My invisibility gives me the ability not to be defined by the public as my disease. This is important because EVERYONE is more than their diagnosis. 

That way you know when he (or she) looks at you, its for you, not your illness. 

Chemotherapy

"Oh my god, your hair is so thin!" "Yeah, it falls out because I'm on low dose chemotherapy" "YOU HAVE CANCER?!?" 

I dislike chemo. I've never been on enough to go bald or have completely debilitating side effects, but I've been close. A common medication used to control many autoimmune diseases including inflammatory arthritis, cancer, and, you guessed it, Crohn's disease is called methotrexate. Given by a subcutaneous injection once a week, this medication was AWFUL! The normal side effects from chemo were present. I'd get really really nauseous, weak, achey, light headed and just generally felt awful for about 24 hours after my injection. So basically, it was like having a violent stomach flu once a week. Not exactly a great time when you're living 6/7 parts of life. 

After being on methotrexate for a couple of months I started to get anticipatory side effects. Yup, that is EXACTLY what it sounds like. BEFORE I took the injection I would start to get sick. Soon enough it started to spread into stuff that wasn't even related to my injection. If I saw colours that looked like the colour of the medication I would start to feel sick, I couldn't talk about the medication, I couldn't even think about it without feeling sick.

I had a funny experience when I went to a leadership retreat with a bunch of other young adults with chronic illness. Through conversation we deduced that about 3 or 4 of us had been on the ol' methotrexate. We talked about it for about 5 minutes, then all at once we all said "Can we stop talking about this?" And as I looked around, and grabbed a glass of water to settle my own stomach, I noticed the green tinge on my peers faces. Turns out I wasn't the only one to get anticipatory side effects.  

I am not including an image of methotrexate because well, I'm starting to feel icky after writing this post. You can google it!

The Dark Side of Peer Support

"What meds are you on?" "Remicade" "Oh, I was on that a couple years back, I hope it works for you"

The old saying "misery loves company" could have been written by people with chronic illnesses. However, I've found that spending too much time with other Crohnies can sometimes generate more misery than it alleviates.

As a young IBD patient, I was routinely recommended to attend IBD patient meet ups, which gave kind of a support group atmosphere. The problem is that if you cram a bunch of teenagers, with the exact same illness from a very small area into a room for a couple hours. Things get personal and angsty. Fast. 

These meet ups, instead of making me feel like I was less alone in having a chronic illness, and more justified and intensified my feelings of "why me?", anger and hostility towards my illness, body, and even caregivers. This was NOT a productive or enjoyable attitude to have. 

I made a certain friend who also had Crohn's and her outlook corrupted me to be untrusting to my doctor, and generally feel like "the world did this to me". It was awful.

Luckily after only a short time I realized how ridiculous this whole viewpoint was. I cut my ties with her, and have since been reluctant to make friends with other IBDers. 

However, I did NOT cut myself off from peer support. I find it extremely positive to connect with other people with chronic illnesses. When you're in a mix, everyone shares sympathies of difficulty dealing with the burden of illness, feeling isolated and depressed, dealing with medications and side effects and other commonalities. But no one shares the exact same doctor, exact same symptoms or exact same stories. 

This has been my way of finding peer support that actually benefitted me, rather than dragging me down into a dark abyss of negativity. 

Alternative Therapies

"Have you ever tried meditation? A friend of mine has Crohn's and he meditates a lot" 

As a person with a chronic illness in the Western world, I'm all for traditional medicine. Perscribe me an idea, write me a script and gimme those pills. My Crohn's disease. however, has been uncooperative and typically unresponsive to most treatment plans, much like a resistant toddler to the idea of toilet training. I do not know the number of medications and treatment plans I've been on, but it must be more than 30 (not all at once, just over the course of my time with Crohn's). 

So naturally, a couple of alternative therapies have been recommended to me even by my traditional doctors. I've tried quite a few of them, all with mixed results, I think the key is to try and find the good in any treatment. 

Below I've listed some of alternative therapies that I've tried:

1. Probiotics             

• Taken in capsule form, the idea is that these probiotics balance the bacteria in your gut, therefore reducing symptoms of your IBD. Truthfully, I didn't notice any difference in my symptoms, and the probiotics weren't covered by my insurance and were expensive. Not worth it. 

     2.   Meditation

• The idea of harnessing your inner healing power, to help control your disease is a little far fetched in my opinion. However, I do think the idea of taking time to clear your mind, free of stimulation, to reduce stress IS beneficial for your health. My problem is that I suck at clearing my mind. Like, REALLY suck. Maybe I just need to practice more. 

     3.  Therapeutic Massage

• Therapeutic massage targets the muscles in the body, reducing the stress around them and can be effective in managing MANY types of pain. This happens to be my favourite alternative therapy that I have tried, I've been getting them for almost 5 years. Many insurance companies cover a finite number of massages per year and many salons do direct billing. I don't know how much of it is stress relief, how much of it is the reduction in my back pain from working on my muscles, and how much of it is just the wonderful feeling of getting pampered, but I have to say, I'm a fan.  

    4.  Acupuncture 

• This method of alternative medicine originating back to ancient China involves sticking teeny tiny needles into very precise spots on your body to stimulate your nerves and brain and neurological feedback responses to control pain. I tried it. I didn't like it. I'm not a fan of needles, so it wasn't my preferred method of *alternative* treatment. Not to mention it was generally ineffective for me. My pain comes in waves, very intense pain, but it doesn't last very long. Acupuncture isn't really designed to target that kind of pain, so it isn't surprising that I didn't experience life changing results. 

Another thing that a lot of people with chronic illnesses use to ease their condition are herbal supplements. I personally haven't tried anything like that. No teas, no oils, nothing like that. Personally, I know how powerful some herbs can be, and I'm a little afraid to try them. I mean, what if they interacted with the meds that I'm already on and messed them up?  My doctors have never recommended them (not that they would), but they did say if I was considering taking them to check with them first, which I think anyone should do. 

My concern with the supplements directed by naturopaths and homeopaths is that it seems like a big cash grab. I've know people that were pouring absurd amounts of money into these herbs and didn't see a huge benefit. I'm talking like $60+ per container of capsules. Yikes.

My attitude towards treatment is always keep an open mind, but ALWAYS consult your doctor before starting any alternative therapy. 

Tube Feeding

"You can't eat for 3 months?!" "Nope." 

"Oh man, I couldn't do that."

In Canadian paediatrics, one of the most popular treatments for Crohn's disease is naso-gastric tube feeding. Basically, this means a thin, flexible tube is put up your nose and threaded down to your stomach. The left overs are taped to your face, and connected to a pump and then easily digestible solutions are sent down into your body. 

The theory behind this is perfect. The solutions (similar to Boost and Ensure) give usually underweight,  malnourished kids a huge boost in calories and vitamins, helping them recover from a flare. The solutions are so easy to digest that it gives the digestive system a chance to take a break and heal after being inflamed. 

But as good as this sounds, it's a brutal treatment option. I would know. I've been on tube feedings twice. You have to commit to not eating solid food for three months. You are allowed a finite amount of "clear" liquids to curb your cravings; these include chicken broth with no green bits, water, gatorade, light pop, clear popsicles, and three clear hard candies a day. 

This honestly doesn't sound too bad, you're not hungry when you're on the feeds, but you feel socially isolated. You don't realize how much of our lives revolve around food. It's everywhere. I missed eating dinner with my family so much. It was brutal. 

Another thing is that the tube feeding is very visible. People stare at you, people ask you what is on your face, one recently immigrated Iranian student in my high school thought my pump was a bomb...

You have to leave the pump hooked up about 22 hours a day, so it took a bit of time getting used to having to carry it every where and listen to it while I slept.

Also, because I was in my teens when I was on the feeds, I was expected to insert my own tube, when it had to be changed once a month. That's right, I now, have the skills to measure out tube, and feed it up my nose, and then down into my stomach. No, it's not easy, no it's not fun, yes, you gag.  

But I think the worst part about tube feeding for me was the fact that it didn't work. I was still symptomatic, and just plain miserable. 

I made it through a couple of months each time, but it was NOT a good treatment choice for me.   

Top 10 Things to Bring to the Emergency Room

"Honey, I think I need to take you to the ER." "No, please, can we wait just a little bit longer?"

I've had my fair share of trips to the ER. Never for the normal reasons that someone ends up in a paediatric emergency room like a fall off a bike, reckless play fighting, or a scary cough. No, I came in with fevers, abdominal pain, and fainting. I resist going to the ER with every fibre of my being. I put off walking through those doors as long as I can for several reasons: the long wait, the uncomfortable beds, the procedures, but mostly I detest having to work with a new health care professional on account of my medical history being so complicated and specific. The poor ER doctors have to learn a LOT about in a very short period of time, and sometimes when I'm too sick, that can prove to be difficult.

Regardless, after all my trips I've learned to pack like an expert, to make the experience a little more bearable.

These are my top 10 items to bring to a visit to the emergency room, in no particular order:

1.  Comfortable Clothing
• Once, I fainted white volunteering as a research assistant and got taken to the ER via ambulance. I was wearing a dress and heels. WORST ER TRIP EVER. Your best bet is to wear comfy clothes like sweat pants, yoga pants, tank tops and bring a sweater that zips up (easy IV access). This will keep you from getting uncomfortable during your visit.
2. Cell Phone Charger
• Lots of hospital rooms have extra outlets designed for medical machines, but if they're not in use, save your battery and plug it in. You want to be able to text or call people when you find things out. 
3. List of Medications/Therapies
• This should be saved in your wallet, or even better as a list on your phone. It should include medication names, dosages, and how long you have been taking it. That way when the fourth person asks for your medications, you can just rattle them off like a skilled auctioneer. 
4. Lip balm/Lotion
• Hospital air is super dry from air conditioning, heat, and purification. You may not be allowed to drink water, so lotion and lip balm are often a saviour in those parched conditions.
5. Clean Underwear
• Sometimes, you just need to feel fresh after hours of sitting or lying in one spot. Not to mention I'd be lying if I said I'd never lost a pair of panties in the hustle and bustle of a health care centre. 
6. Slip On Shoes
• If you need tests done, sometimes you're asked to go to them. Quickly. Slip on shoes like clogs, sandals, or moccasins make it easy for you to get up and go, so you can get well and get out. 
7. Book
• You can only play so many levels of Angry Birds before you go a little crazy. A book provides non-repetitive entertainment. Chances are if you're a student, you will have readings for class to do, if not, just read for please. It's fun. 
8. Headphones
• Whether it's to tune out your room mate's incessant cough or to put on a relaxation app, headphones provide a tiny little world for your mind to go into when the ER becomes too much to handle. Just make sure its not so loud that when a nurse or doctor comes in to talk to you, you can still hear them. 
9. Hair Elastics
• A number of medical procedures and tests will have you in the most odd positions. "Lie this way, now flip over, move your leg here, we're going to put you upside down". If you're a lady with long locks (like myself) go for a topknot on your head. It keeps your hair out of your way and if you're on your back won't painfully dig into your head.
10. Patience
• Try to be patient. ER trips can be really long (I've waited for 8 hours before). Just remember that you're there for a reason, and the more helpful you are to the medical staff, the more helpful they will be to you. It's very difficult, but in the long run it will be the best option. 

Me and Caffeine

"Should you be drinking that?" "Probably not, but I don't care"

Coffee. Tea. Dark Pop. 

I can't let a day go by without starting off my day with a nice hot beverage full of the wakey-wakey chemical. I will literally fall asleep without it. I attribute most of that to being raised in a very European style (I'm half Dutch), and started drinking tea every morning when I was about 8 years old. 

However, there is nothing, I repeat nothing, good about caffeine for people with Crohn's. A full bodied cup of dark roast has even the healthiest gut rushing to the toilet in a half hour. For someone with Crohn's, caffeine is like kryptonite, yet a lot of I've met people with the diagnosis indulge in even more than the daily cup of joe. 

It's a really hard balance to achieve. As mentioned previously in one of my posts, one of the most debilitating symptoms of Crohn's disease is fatigue. Caffeine is fake energy, but it comes with a price. You have to be choosy. The internal debate of "Do I stay tired or do I use the bathroom a few more times?" "Do I stay awake to write this paper and suffer through the pain, or do I give up and beg for a deadline extension?" is relentless. I tend to choose the more painful, frequent trips to the bathroom over missing out on something I want to do, even if I feel ill. When I'm in a huge flare (I'm talking hospitalization) I tend to stop the caffeine, mostly on account of my doctors not allowing me to have it, but give it a few weeks back at home and I'm right back on it.

I LOVE meeting a friend for coffee, sitting down with a cup of tea to write, or having an ice cold diet pepsi on a hot day. Caffeine is the gut stabbing friend that I just can't seem to do without, nor do I plan to.

Meat and Potatoes

"So you must have to be really careful about what you eat then, eh?" "Well, it depends."

When people think of eating to be healthy, they tend to immediately picture fruits, vegetables, whole grains and nuts. Mmmmm....nothing like a hot delicious salad! 

However, when you have active Crohn's disease, you would probably be better off pouring battery acid down your throat and praying for mercy. 

When I'm in a flare, I eat what would be considered the most unhealthy diet imaginable. Low fibre, high sodium, high fat, high carb, no dairy. 

White bread is my staple food, it makes up about 40% of my diet alone, followed closely by white rice. I eat sandwiches on white bread, with sliced turkey and a swish of mayonnaise at least once, if not twice a day. I rely on bacon, eggs, hot dogs and smoked salmon for protein. I have to limit my produce intake to about one serving a day, except for bananas, they're ok. Apples, broccoli, spicy foods like curry and thai food, cabbage, turnip, and carrots are completely off limits, all of which I learned the hard way. 

Although this diet may seem like every 8 year olds' dream, it gets bland pretty quickly. Every once in a while I give in a have a humungous stir fry or salad, and pay every bit of the price. Let me tell you, usually, it's worth every penny. 

This is what I've found affects me when I'm in a flare, no one's disease is the same. Other people I know live off of Boost and Ensure when they're sick. Other people go with steak and potatoes. This is just my own experience.

 But there is something you have to understand. Foods can worsen or trigger symptoms, but they cannot put you in a flare. Eating a piece of broccoli cannot warp your immune system into attacking your digestive system. That's just silly. 

When I'm well, I have so much more freedom with my food choices. I can have salad with my supper, berries on my oatmeal and just about as much melon as my heart desires. I still tend to avoid my trigger foods, but when my disease is in remission and under control, the reigning hand of the heart unhealthy diet loosens its' grip on my colon. 

How to Apologize

"Sorry." "Can you say that like you mean it?" 

I have a problem apologizing. I don't know how much of it is my personality or how much of it is being Canadian, but I apologize for everything, whether it's my fault or not. If someone bumps into me on the sidewalk, I say sorry. If I forget to close the window on a rainy day, if I forget something someone told me one time that was of little significance, I say sorry. I over apologize to the nines.

However, I'd rather over apologize than not know how to at all.

Some people see apologizing for something as weakness, they're hostile and reluctant to say sorry because they regard it as admitting they were wrong or at fault. 

Apologizing is not always admitting you are wrong. I've apologized for countless things without stating I was wrong, or that the other person was right. 

Apologizing is taking responsibility and showing remorse for the damage that your words, actions, behaviours and choices have caused another person. 

Apologizing acknowledges the other person's feelings, regardless of what you are apologizing for. 

That's why people say "I'm so sorry" when someone is experiencing a loss. Last time I checked, 99% of the world's population isn't murderers, so why is it that we can say "sorry" at a funeral for a death that isn't your fault, but not over the dinner table when your sibling takes your joke a little too seriously?

There are two things you can say when you apologize: "I'm sorry" and "What can I do to fix this?". Anything else, and it gets complicated. This bare bones apology might seem skimpy, but it is genuine, and sincere. 

It's just a matter of realizing that people's feelings are more important than being right, or free of "fault", we all need to swallow our pride, and value our relationships with people who are important to us more than our own stubbornness.

Try to keep the peace.

But I Just Came Off It!

"I think you need a course of steroids" "Like, need?" "Yes, need." "Fine."

Me and preddy have had a rough relationship. A little more time together than was good for us I think. I've actually lost count of exactly how many courses of prednisone I've done, but on average I believe it was about 2 per year since I was diagnosed. I'm guessing I've done between 15 and 20 courses of it since I was 12. Thats NOT good. 

As a young female just starting out junior high or middle school or whatever you want to call it, my first  course of prednisone was traumatic. It made me healthy, don't get me wrong. And I felt better on it than I had the entire previous summer. I even chose it as my treatment path, it was either that or 3 months minimum of nasogastric tube feeding (I'll explain that later). But holy crap, prednisone was rough at age 12. 

I had the most veracious appetite. I would come home from school and literally eat bowls of cereal or soup and food until I was full, which, took forever and never felt quite satisfying. So naturally, my weight ballooned upwards, I put on 30lbs in about 3 months, my cheeks puffed out and I was horrified at my appearance. At 12 years old, this really was the worst thing that could happen to poor adolescent me. After I finally finished the last of the pills, I was free! But I relapsed into another flareup only 10 days later. I spent the next several years with my Crohn's trying to avoid prednisone as much as possible.

As I got older, my reaction to each course of steroids changed. Now instead of getting extremely hungry, my mood is more effected. I become quite manic, taking on huge projects (why do you think I've started this blog?), not sleeping, being irritable and hyper. This impacts my relationships with people I care about, it affects my ability to work and learn due to my lack of concentration, and my less than desireable amount of sleep just throws me off completely.

However, now I realize that it's temporary, and I value being able to participate in life by feeling well, than caring about silly aesthetic side effects. My looks return, my mood stabilizes, my relationships recover. But I can't rebuild any of that if I'm still sick.

Comment below with any of your experiences on prednisone!

Doin' Roids

"I'm on steroids" "Hahaha, are you gonna get jacked?" "No... wrong type"

So, for many inflammatory conditions, the miracle drug, is an antiinflammatory steroid called Prednisone. It can be taken in tons of forms such as pills, puffers, IV, eye drops, and I'm sure more. It is used to treat everything from asthma, to Crohn's, to Lupus and everything in between.

Although it makes you feel better, and fast, the general consensus of this "miracle" drug, is that it is just satan. The side effects are horrible. In my opinion, they come in three categories: health, aesthetic, and emotional. The health side effects are by far the most serious to your body stuff like 

• Blurred vision
• Abdominal pain
• Peptic ulcer
• Infections
• Painful hips or shoulders

And long term damage to your bones can cause huge problems like osteoporosis later on in life.

If that isn't enough, there are less than favourable aesthetic side effects such as weight gain, facial hair, acne and "moon face" which essentially means that your cheeks swell up to make you look like Alvin the chipmunk. I've been there, it's not pretty. (Check out my "Contouring for Puffy Cheeks" video on youtube for tips to deal with this). 

Then, there are the emotional side effects, when you take prednisone, your mood can really go one of two ways, depressed or manic. But a lot of people have trouble concentrating, have heightened anxiety, difficulty controlling their emotion and indecisiveness. This is all in addition to the emotional burden of dealing with whatever condition you are taking the prednisone for and the health/aesthetic side effects. 

If you are put on prednisone, comment! I have tons of tricks to deal with the side effects and would love to give/receive support. 

Another post about my personal experience with prednisone will follow shortly!

The Downward Spiral to Diagnosis

"I have to use the bathroom" "Again?"

It started when I was 11. I remember the exact moment I first felt Crohn's pain. I was at choir camp. It hurt, but somehow I knew I needed to use the bathroom. So I did, and it went away. I thought nothing of it. But it happened the next day. And the day after that. And every day for the next year, every time I had to use the bathroom. 

This sign is my saviour.

I was ok. I coped all through grade 6. I did well. Then after school ended for the year, everything changed. I started having more pain, I was tired all the time, I had to get up to use the bathroom multiple times a night. I had no appetite. I started using the bathroom over 12 times a day, because of this I started losing weight rapidly. By the time I was diagnosed I had plummeted to a scary 85 pounds at my current adult height. I was so pale, and I started passing blood when I went to the bathroom, making me feel even worse. It got to a point where I ate half a sub for three days. Not half a sub each day, one, six inch sub for three days. I began to have the most excruciating pain when I swallowed anything. Even water. If you've ever swallowed a potato chip  and had a sharp edge drag down your throat, you know, the pain radiates to your chest and back and you can't breath. That was the kind of pain I had every time I swallowed.

My parents knew something was very wrong, so they brought me into our family doctor who ordered blood work. I cant remember what the results were, but they were not good. In less than two weeks I had an indium scan done. It's this test where they take a ton of your blood, dye your white cells with radio active dye, put them back in you, then take XRays. The dye makes you light up like a Christmas tree in the spots where your white cells go.

That test was enough to convince the doctors at the hospital that I needed an endoscopy and colonoscopy almost immediately. About two weeks later I had that done. I remember being terrified of going into the operating room alone, worrying that I would have to wake up in the middle of the scope to use the bathroom... I obviously did not have a clear understanding of how anaesthesia works. 

When I woke up I was taken to a hospital room, and my parents quietly told me that I was probably going to have to stay at the hospital for a few days. I cried when they said that. Then, the gastrointerologist that had performed the scope on me came in and said the rock solid words that would change me forever: "Yes, you have Crohn's Disease". 

A Pain in the Butt

"I'm not feeling well today". "Oh" Backs up a step. "No, don't worry, it's just my Crohn's. Not contagious" "Oh, what's Crohn's?" Sigh. 

Crohn's disease is an autoimmune disease that affects the digestive system causing inflammation occurring at any location of the digestive system. Symptoms include but are not inclusive nor limited to:  increased inflammatory markers in blood work, decreased appetite, malnutrition, weight loss, blood loss, fatigue, joint pain, red eyes, sore eyes, head aches, increased frequency in bowel movements, increased urgency in bowel movements, pain, lots of pain, more pain, and diarrhea.

Sexy.

Somewhere between me finishing elementary school and starting junior high (awkward stage for any adolescent at BEST) my immune system got confused. The poor thing was probably trying to figure out what fashion was, how to get boys to notice me or not notice me, panicking at the impending thought of being a teenager and totally thought that my digestive system was a threat to my survival. It launched a full blown attack, like that scene in Braveheart right after all the scots show their butts. It was brutal, but that will be another post in and of itself. 

Regardless, the primary symptoms I exhibit of my Crohn's is pain in my left lower quadrant (that lower quarter of my stomach on the left), increased frequency in bowel movements, increased urgency in bowel movements, fatigue, and diarrhea. My disease is primarily located in my stomach, ileum, and pretty much my whole colon. I've also had episceritis which is an inflammation of the white part of my eyes. 

This is what Crohn's disease is to me. Literally a shitty disease. A pain in the butt. 

Jack Mercury

"Some people are born sick, some people achieve sickness, and some people have sickness thrust upon them." - Not Shakespeare. 

I'm Jack Mercury, and I had sickness thrust upon me. I was diagnosed with Crohn's disease two weeks after I turned 12. That was almost 8 years ago. This unpredictable, chronic, and morbid condition has impacted me in ways that I never imagined possible and it's time to share it.

This blog will entail chronicles of my life, as someone who continues to pursue life, despite all of my challenges.

When you're sick, your perspective changes. So here is mine.

Thank you for stopping by. Be sure to check out my youtube channel: chronicallybeautiful12