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!

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.