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.