Who are you?

"In this response I want you to answer the question: Who are you?"

That, my friends was the assignment my ancient history teacher gave us in our first class. It wasn't the first class I had of high school, (unfortunately), because that would have made for the most perfect cliche'd high school moment. However, it was the first class of my second semester of high school, just when I thought I had begun to figure it all out. 

I didn't know how to answer it. I knew my peers would answer by saying things like "My name is So and so, I am x years old, I'm in grade whatever." The bolder ones may have talked about their personal lives: "My parents got divorced when I was x year old....." etc. I remember looking around my class room and noting that everyone was hunched over their binders, scribbling away on their looseleaf. I wondered if they thought that the more they said, the better. That way at least if they didn't know who they were, they gave my teacher enough clues that he could figure it out.

I remember writing something, that I thought was profound. Give me a break, I was 15. But I remember writing: "I don't know who I am, I think that will be for you to decide as I get you get to know me, I could tell you things that I do, titles I hold, even perhaps what I am, but, I do not know who I am. I hope I will soon discover it".

It has been almost 6 years since I wrote that response. I remember what I answered, distinctly, but I do not know what grade I received. I don't think I kept it. 

It has been almost 6 years since I wrote that response and I think I know even less who I am then when I was 15. 

However, I am loving the journey.

My Crazy Roommates

"They're crazy. All of them!"

Roommates are difficult to live with when you spend months planning, deciding and agreeing with when you are about to live with some of your best and closest friends. Getting strangers as roommates is QUITE the experience. Let me fill you in on some of the characters I had to share a living space with over the past month.

Nervous Nelly - This girl was a few years older than me, the only other patient under 60. She was only there for one night. They wheeled her in in the evening, and she got very upset that she wasn't in a private room. I mean, come on, you're there for ONE NIGHT. The next day when doctors removed her stitches she nearly had an anxiety attack. It was exhausting to be around someone who was so on edge.

Bedpan - This woman had been in the hospital since October. Like forever. I dont know what she was in for, but it wasn't good and she was on 5 days bed rest. Which meant she used the bed pan. Ew. One time she had a phone conversation WHILE TAKING A DUMP ON THE BED PAN.....I don't understand why these people exist...

Dilaudid Queen - This woman was small and spry and a smoker and she looooooved her dilaudid. She took more meds in her week after surgery than I did in my 21 days. She would request a 4mg dilaudid and then another 2mg breakthrough tab less than an hour later. Not good. 2mg was what they would give me the whole time, even after my surgery. Towards the end she would request pain meds, nap, then go for a long walk...someone in that much pain wouldn't be able to walk much. Just sayin'.

The Whale - This woman had a weight problem. I feel bad nicknaming her the whale, but I couldn't come up with something that wasn't mean at all. She had a stomach stapling surgery, and for her sake, thank god. Her weight was obviously at a very risky level. She had to turn sideways to get in the bathroom, and that was all the walking she did. I felt bad for her actually because I would pass my evenings eating chips and soda crackers with margarine while she was only allowed broths. Ouch. I love food. I hope things go well for her. 

The Grinch - This woman was in the bed accross from me who sat there looking sour all hours of the day. She won the curtain off with me. This basically means we had a stand off. She won. I drew my curtain, sacrificing space for minimal privacy. I never forgave her for that.  

Nurse Ratchet - Well, well, well, Nurse Ratchet. What a character. This woman was a retired nurse, which is essentially all of the nurses worst nightmare. I once heard an experienced nurse use the phrase that nurses "eat their young". This is what Nurse Ratchet did. Every little thing that a nurse would do she would nitpick apart, criticize and complain about. She also made them remove her catheter right after her surgery, despite the fact that she had a bladder condition. She used a commode. She would hop on the commode and ride that thing like a motor cycle. It was traumatizing. She was just so awful to the nurses. They didn't deserve it. 

The Forgetful Commode - There was this little old lady, literally, she was 90, who was in the bed next to me for some part of it. The poor dear had Alzheimer's. But oh my goodness that sure made things so irritating. She would wake up in the middle of the night and pull up the curtain and ask me where she was. She also never called the nurses when her IV beeped off, so eventually I just started doing it for her. It was sad that she was losing her memory, but it made being her roommate a job in and of itself. 

Mrs. Cranky - Mrs. Cranky. Where do I even begin? This lady was probably in her 80s. I don't think she had a very major surgery done, but boy oh boy she made a big deal of it. She wasn't losing her memory, but she was losing her hearing and her marbles. She was almost completely deaf, which meant that all the staff had to basically yell at her so that she could hear them, which meant some very abrupt wakeup calls for me in the middle of the night. Mrs. Cranky would sift in and out of sleep, randomly yelling in between her snoozes. One time, when my best friend was visiting me, she woke up, yelled "Debbie, I thought we were friends!" and promptly went back to sleep. Let me put it this way, there was no Debbie. At least not around us. Mrs. Cranky would refuse to use her incentive spirometer. She also refused to get up and even attempt to walk, stand, or even sit in a chair. She also abused the nurses. Playing mind games like yelling at them saying "I am requesting a transfer" or "Why are you punishing me? What did I ever do to you?" When they did nothing but cater to her every whim. Mrs. Cranky also had problems with incontinence. . . big problems. I'm talking 3 times in 2 hours in the middle of the night. Kill me. That mean 3 bed changes and a lot of yelling. Mrs. Cranky eventually ended up getting moved to a private room because of all the grief she caused. Lucky bitch. 

Needless to say, I never want to share my living space with anyone, ever again. 

How To Convince People You Aren't Disgusting

"It's been a week since I showered" "Really!?! I can't even tell"

When I was in the hospital I had a number of things attached to me post surgery. I had a catheter, a rectal drain, two IVs, oxygen, and a drain. I basically was an octopus, so there was no showering for a while.

What did I do to make myself seem less of a disgusting mess while not showering for a while? I'll tell you.

1. The Miracle of the Bird Bath

Well, this is pretty self explanatory, but you get a face cloth (or several) dip it in hot water, and scrub      your smelly bits. I'm talking armpits, under the boobs, groinal...

My personal favourite!

2. Antiperspirant

I'm sorry, but I don't care if you're all natural, and don't like the idea of shutting off your sweats, but if you're going more than 3 days without a shower, you need some 24/7 protection. 

She's got the right idea!

3. The Bun and the Band

Once your hair gets greasy, there isn't any saving it. You can use dry shampoo for a day or so, but honestly the product builds up and works against you. My go-to greasy hair cover up is a top knot and a stretchy headband. It works wonders and keeps your guests from thinking you're completely gone. 

Where Have I Been?

"I'm going to the grocery store, can I get you anything?" "Lays Plain Baked Chips please!"

Well, well, well, look who decided to keep blogging? I bet you all thought I had given up. Quite the contrary. 

I actually went to camp for a week (NOT bringing my laptop to that, it's my time away from real life) and then had surgery. I'll get into the details of surgery when I feel ready. It's still pretty fresh (less than 12 days ago!) and I'm still adjusting.

The good news is that I'm alive and well and back to stay.

I am going to use this post as basically a splatter of word vomit to gush about my current obsessions. I am taking a semester off of university to recover so I've developed some interests to keep myself occupied. They are, as follows:

1. Home Decor

• A friend of mine who also blogs runs a home renovation/decor company (see her blog here!) and I was talking to her about it and I'm hooked. I have no less than 5 home decor magazines on the go right now, follow a few twitter accounts, follow a few blogs, I'm a woman obsessed. My parents agreed to let me design the renovation for their ensuite bathroom and I'm thrilled!

2. Lays Baked Plain Chips

• They're not flavourful. They're very plain, but for some reason I love them. I always have. I first tried them alongside a Subway sandwich but now I can't stop. They're slightly salty, and easy to digest. The perfect Crohnie snack. 

Cuties like this are so fun!

              3. Claw Clips

• I don't know why I am 20 years into figuring out this, but claw clips don't leave an elastic bump in your hair....AND they create the illusion of having more hair, which for me isn't a bad thing. Mine is so thin.

                  4. Pinterest

• When I first got my account, I didn't think much of it. I got it to share ideas with a photographer for a shoot that I was doing makeup for. But recently, with my inability to do whatever I want, I've been pinning up a storm of dream boards, plans and other thrills for the future. 

I'm back now with vengeance and I WILL be posting more regularly. 

Stay strong beauties!

I LOVE Toilet Humour

"I am better at describing the intricacies of poo than wine" 

No sense in wasting TP when it's just a Pee ;)

I can credit my sense of humour with keeping me from sliding into huge depressions at every flare up of my Crohn's disease.

There is a VERY special place in my heart for toilet humour, and basically NOTHING can gross me out. 

This is a musical number performed by the hit show Scrubs, that I think every person with IBD should see, and probably memorize. 

Man is it catchy.

Sit back, enjoy and listen to my Crohnie theme song: Everything Comes Down to Poo

Lub de Dub

"Listen to the heart, you will hear it. Lub de dub. Lub de dub."

As a particularly talkative, understanding and articulate patient I was often guilted into agreeing to do medical student teachings as an inpatient at my children's hospital. It was a teaching student and I was a good teacher, so I always felt obligated even though I felt awful. 

This one time, I got roped into doing a two hour long basic physical teaching session to a bunch of new med students. It was awful. I was really sick and I didn't know it was going to be two hours long when I agreed to it. 

When they walked in, they were four, young, male, extremely attractive med students. McDreamy McSteamy McHottie and McSexdream. All of a sudden it wasn't SOOOO bad. I was 13, I wasn't going to pass up two hours staring at some hotties instead of my deadpan, way outdated hospital wallpaper. 

Even with their hotness, after about an hour and a half of listening to one of my gastroenterologists (Crohn's doctors) talk to the students and have them poke and prod at me I was almost at my wits end. 

There is something you have to remember about doing med school teachings. They don't have experience. They have to really dig to feel anything because they don't know what anything feels like. They were supposed to be feeling my poor, inflamed, sore colon, it felt more like they were digging for my kidneys which reside almost in your back.... OUCH.

My GI started explaining to the four, McMedStudents about how the heart sounds. My GI was from central asia. I'm not sure if it was India or Pakistan or somewhere around there, I couldn't tell (forgive me), but in order to explain the sound of the heart beat he began saying "Lub de dub, lub de dub. you will hear the lub de dub, lub de dub". 

I was sick and tired so restraining my giggles wasn't tooo difficult, but the med students didn't fair as well. I saw the corners of their mouth being tugged towards their ears as their will power was tested. 

 Then, IT happened.

Something happened I never thought I would ever witness in my life. Something I have never witnessed since.

Mid sentence, my GI reached behind himself, and ungracefully picked a wedgie through his white lab coat!!! He never even stopped talking!!!

My mouth dropped. 

I looked around to see if anyone else had just experienced what I had. 

They had. Only two. My mother. And one poor, med student. Lets call him McScarred-for-Life now.

I couldn't handle it. I broke. I couldn't stifle my laughter. Neither could my mom. Neither could McScarred-for-Life. 

I crammed my blanket into my mouth, turned my head in laughing shame. I'm going to hell for sure. 

It was one of the most hilarious moments I have ever experienced in my life as a Professional Sick Person.

Tell me yours!

My War With The Mirror

"I feel fat." "Fat is not a feeling, what do you really feel?"

Jr high, middle school, that little waste land between elementary school and high school, what ever you want to call it, is a rough time for just about everyone. Especially physically. It's the years of bad acne, braces, growth spurts, puberty, and really bad smells. Eugh. I never want to go back there. Thank god it's over.

                        Jr. High......

Those years feel like your body is totally out of control even for someone without a chronic illness. But for me, they were horrendous. Not only was I going through all of the normal changes that young teens do, my body was also being morphed by both my disease and my medications. 

When I started Jr. high at age 12, I had been really sick, so I came in weighing a paltry 90lbs. I was put on prednisone, and before Christmas I was up to (a much healthier) 115lbs. Still extremely small, butting was such a drastic change, I was devastated. This was the first of many rapid weight fluxuations I would fa over the next 8 years. 

I had no way to cope, no strategies to deal with my anguish, and I began to develop a very poor body image. 

My self-esteem was ok. I was able to recognize qualities in myself, like my ability to make people laugh, my intelligence, my communication skills, that made me realize I was a worth while person, I just hated the shell I was living in. 

At 12 years old I had stretch marks, love handles, acne, braces, thin hair, puffy cheeks, and I hated it all. I don't know if I've ever fully recovered from that initial blow to my relationship with my body. On top of it all, my body was weak from illness and wasn't recovering. I felt so betrayed. My body wasn't beautiful, (At least I didn't believe it was), it couldn't do anything wonderful, like push-ups. Or the splits, or run, or jump, or anything like that, it didn't even work well as a body as basic function. 

No wonder I had issues.

It's taken a lot of time to build up the love for my body. I really have to credit dance (as seen in this post) for renewing my faith in my body's ability to do something admirable, makeup, clothing, and my boyfriend for helping me believe that I am beautiful and desirable, and my unwavering hope for remission, that someday, my body will be normal. 

Ignore this mess below. My iPad wouldn't let me delete it. It was a failed link attempt. 

► 1:01► 1:01 www.youtube.com/watch?v=jFbvq8BYEnI

► 1:01► 1:01

Dance Yourself Clean

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

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

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

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

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

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

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

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

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

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

On My Own, With No One Here Beside Me

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

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

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

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

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

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

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

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

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

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

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

 

Bums and Booze

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

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

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

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

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

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

Pretty much me the next day. 

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

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

 

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

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

Where Will You Be When Diarrhea Strikes

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

You could be here...

Or here...

Or here....

Or God forbid here...

It could be here...

I think it happened to him here...

Those girls are in ignorant bliss....

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





. . .

That's the same face I make.






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

A Picture for Fun

"I love a good pun"

My Sanctuary and My Prison

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

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

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

OH BAYBEH

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

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

I'll take it!

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

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

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

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

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

A bit hyperbolic, but accurate metaphor

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

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

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

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

Pain Management

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

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

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

Mmmmm comfy.

My pain lasts for hours.

So? How do I manage this?

Good question.

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

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

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

Diss stuff. 

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

When that's not enough?

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

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

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

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

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

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

Losing the Light

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

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

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

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

I totally am not this poised when I faint.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

To the paramedics....I'm sorry. 

Other Than My Guts...

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

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

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

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

1. Eye Problems

Thank god I'm not this bad.

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

2. Blood Pressure Problems

Just like me, fainting away.

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

3.  Low Nutrition

Disgusting.

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

4. Hair Loss

A sheer veil...

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

5. Recurrent Yeast Infections

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

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

What else do you guys deal with?

This One Time, In the Hospital...

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

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

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

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

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

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

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

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

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

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

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

Fever in the Heat

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

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

So? 

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

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

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

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

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

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

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

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

Chronically Ill Romance

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

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

But it doesn't have to be. 

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

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

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

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

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

Hopefully, it's not as dramatic as this.

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

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

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

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

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

Noah loved Ally, even when she got sick.

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

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