DAY 10: WEGO Health's National Blog Post Month

DAY 10: LOL post. Write something funny or share something you found funny.

I took so long to type last night's post on my iPod that I actually had to go into my laptop and change the date on the post because it had moved over into today's date. So in leu of that happening again I'm just going to share a bunch of funny pictures that Pinterest has lead me to. They made me LOL, I hope they make you laugh too!

DAY 9: WEGO Health's National Blog Post Month

DAY 9 - Tell a descriptive story about a memory.


Saturday May 8th 2010....

I had just sat in the bathroom for another 20 minutes. It was the 12th time that day. How was there anything left in me? I hadn't eaten anything solid in almost a week. I was down 16 pounds from two weeks prior. I made my way the ten feet to my bed and collapsed in a heap beside my bed. I only had the sense of mind to grab my yellow plastic garbage bucket so I didn't vomit on the floor. It didn't matter anyway. Nothing had been coming out for two days.
When I could reopen my eyes I made my way to the stairs where I immediately had to sit down to avoid the spinning precipice that is the 14 steps to the floor below. I have no idea how long I sat there. I slowly inched my way down the stairs toddler style on my bottom with my head on my knees. As I reached the bottom my mother looked startled.
"You scared me. I didn't hear you coming down. Did you go down on your bum?" She asked as I made my way, now daring to walk to my chair.
I blacked out.
The next thing I knew my mom was shaking me but I was soon out again.
"What's her name?" Said a strange voice.
"Kylee." Said my mother.
"Hi Kylee." Said the strange voice again. "Kylee. I'm just going to attach some stickers to your chest and your legs. OK?" The voice pulled me up out of the fetal position while another set of hands attached the electrodes.
I have no idea what happened next as I was being walked(more like being carried) out my front door and down the concrete steps to a stretcher. I remember the air being cold but they wrapped me in blankets. They put me backwards in the ambulance. Could you be a little gentler people? I thought. The paramedic asked me if I needed a puke bag. I was very white and shaking. My heart rate was also through the roof. She informed me that it was right there if I needed it. I was asleep but awake. It's the strangest feeling.
I wondered if this was dying. I knew I wasn't dying, the sirens weren't on. I do vaguely remember seeing the trees pass quite quickly out of the back window. Faster than they do at 50 kms. per hour anyway.
We arrived and they took me into the ER. My mom followed 5 minutes later. She had to drop my little sister off at my grandparents house which was en route.
The nurse took my temperature, symptoms, all that jazz and I was in a bed within minutes. Maybe I was closer to my maker than I thought? Maybe not. On subsequent ER trips I have learned that if your heart rate is over that of a three hundred pound man eating a plate of french fries after pouring an entire shaker of salt of them, they rush you to the front of the line.
As it turns out I also had a slight fever. So I had to take three Tylenol. This was a feat. It took me an hour but I didn't throw any of them back up. And that's not easy when you're 3/4 of the way to dead. As it turns out will power trumps the grim reaper every time.
They took blood, stool and basically any other bodily fluids they could get me to excrete(which is harder than you think after being dehydrated for so long). And I had to keep drinking water and Pedialyte freezies(ick). I believe it was one cup of water and one or two freezies every 30 minutes or in the IV would go. You have to remember that this was pre-IV days and will power can trump needle wielding nurses as well.
Every test came back negative and they decided it had come down to a case of mildly severe dehydration from diarrhea. But what had caused the diarrhea in the first place they could not say. There was no infection or other obvious source of my symptoms. And so I was discharged as one of those unsolved but resolved cases.
Until August. That was a whole other ball game....

DAY 8: WEGO Health's National Blog Post Month

DAY 8 - Write a letter to your health.


Dear Health,

Who do you think you are? Where are you? On a ten year vacation? I hope you are enjoying the sandy beaches and piña colatas. Or perhaps you are hanging by a rope from the highest mountain known to man. Wherever you are just know I'm here trying to pick up the pieces you've left behind.
I'm so glad that you are having fun while I sit here attached to tubes and swallowing pills. Getting shots and attending endless doctors appointments. While you are off galavanting I am doing everything I can to keep my body from falling apart.
You've left me in a real tizzy here health. My intestines are like a rowdy teenager, not listening to it's parental authority. You are like an older brother who can swoop in and talk some sense into the young with your worldly experience. My blood is like an extreme hoarder. Holding onto all of the door nobs and porcelain cat figurines one house and three storage units can hold. But instead of doors and cats floating around in my blood it's all the iron one person can hold. Health, you are like a counsellor who can talk the hoarder out of mountains and years of treasures. But alas, you are nowhere to be found.
I'm begging you, Health. It's been a long time coming and you've had long enough. When you do decide to return home and get back to your job (if and when that ever happens) I will welcome you with open arms. Until then, enjoy yourself. And hurry home. Pretty pretty please?

Your concerned and somewhat annoyed host,
~Kylee~

P.S. Bring me back a gift. A good one. I deserve it.

DAY 7: WEGO Health's National Blog Post Month

DAY 7 - Redesign a doctor's office or hospital room.


There are some doctors offices that I walk into and think they are alright. Then there are some that I just wonder what they were thinking when designing it. Below I have designed a highly scientific schematic that details my dream doctors office but first I'm going to tell you about the totally wicked features I have included....

•The doctor would have two offices. Side by side. This would speed up the change of patient routine.
•They would also have a timer on the desk that would allow everyone the same amount of time. You have no idea how many times I feel like I get gipped out of time because the doc is out of time and the waiting room is slowly filling up.
•The doc would have an iPad. With all the patient files on it. Why? Because iPads are awesome....
•There would also be two or even three chairs for patients in each room. Some people like to bring moral support and there isn't always a place for them to sit.

•The waiting room needs to have lots of seating. And there needs to be more than three inches of room between each seat.
•My favourite thing about this waiting room is the hexagon shaped television block. So no matter where you are sitting you can see.
•If it's a waiting room of a doctor that children might also frequent then they could have their own waiting room equipped with toys and children's movies.

•A bathroom inside the office! I have to give my gastro. doc's office props for being just 20 feet away from a bathroom but it's just not the same as it being right in the office. Patients would really appreciate it! And it would have paper towels instead of air dryers. Who has time for those things? Seriously?

•An office staff with enough people so you would never be put on hold or get a busy signal when you call.

But the absolute most important thing in the whole entire office is that it's not that ugly pastel blue/green colour that I'm sure they still only make for medical buildings. Notice how my picture is brown. Studies show that earth tones and warm colour pallets are more comforting to patients than cold environments. Decorate a little. If you are going to make us wait. Give us a little something to look at. We thank you!
:)

DAY 6: WEGO Health's National Blog Post Month

DAY 6 - Write about a time that you had to take the high road.


While pondering this question late last night while lying awake in bed (thanks to some very annoying and bothersome heart palpitations) I could not come up with anything. Seriously. Not one single instance. All I kept coming back to was the television show My Name Is Earl. That's right. A television show.
You see, the premise of this show is that this man (Jason Lee AKA "Earl") has a near death experience which causes him to reevaluate his felony career. He then learns of the theory of karma and proceeds to write down everything bad that he has ever done to anyone in his life. He rights his wrongs to earn back karma points in his life. This is the premise of the entire show until it's untimely cancellation in 2009. The entire series in on Netflix if you are interested.
Anyway, back to my high road story. I realized that the reason why I couldn't think of any specific time is because I always try to travel on the high road. Like Earl I believe that the universe will give you back what you throw out into it.
Therefore if you are constantly berating others with condescension and hurtful words then that is exactly what you can expect to get back from others in return. While if you choose to respect and use kind words during interactions with others, even if they are not kind in their response to you then you know you will be rewarded in some other way.
In other words, if you don't have something nice to say don't say anything at all.
:)

DAY 5: WEGO Health's National Blog Post Month

DAY 5 - Write a list of 3 things that you are thankful for/excited about/inspired by.


1. All of the gratuitous things everyone else is thankful for.
•This encompasses family, friends, health(or what I have left of it), money, a safe home, enough to eat, a good job, freedom, etc. Basically anything that other bloggers post as their three things I am lumping into this one thing.

2. My totally wicked awesome cool crafting skills.
•Seriously. I am so proud of the fact that at 22.5 years old I am so creative. Knitting/crochet/sewing/building/paint by number. Anything I try I'm usually successful at. It excites me. Not only can it be a second source of income for a bit of extra spending money but it gives me the opportunity to give back into the world and hopefully earn back some positive health karma. It also helps me get through tough times. And it's very relaxing. :)

3. Me.
•I am thankful that I am me. Through every emotional roller coaster ride. Through every painful test. Through every new and scary diagnosis. Through every life change I've had to make. Through every verge of mental breakdown. Through every laugh, cry, bad day, good day. Through every steroid induced mood swing. Through every day I dragged my half dead butt out of bed to fight through another day. Through every earth shattering loss. Through every euphoric gain. I am still me. And for this I am the most thankful.

DAY 4: WEGO Health's National Blog Post Month

DAY 4 - Write about what's in your bag/purse/backpack everyday.

Isn't this question a little personal? Whatever. I pour my entire life out here multiple times a week for about two and a half years. Quite frankly I'm shocked that I haven't told you what inhabits my bag everyday. Here goes....

*DISCLAIMER: KYLEE HAS RECENTLY BOUGHT A NEW BAG AND THEREFORE HAS NOT WORKED OUT ALL OF THE KINKS WITH PLACEMENT OF ITEMS AND THE PERMANENCY OF THEIR COMPARTMENTS. SHE WILL ALSO NOT BE HELD LIABLE IF SHE CHANGES THE LOCATION OF AN ITEM BEFORE THIS POST IS EVEN PUBLISHED. SHE TENDS TO DO THAT.*

Inside Big Pocket

• Wallet-Complete with cash(when I have any), credit card(when it's not maxed out), debit card(if the other two methods of payment crap out), driver's license, health card(always carry, very important), Medic Alert info(to go along with my bracelet), Fabricland sewing card(you never know when you'll need to sew!), Chapters Rewards card(almost have enough for a free $10 book!), the cutest picture of my second cousins cuddling ever, various gift cards, and receipts from pretty much everything I have ever bought....
• Kleenex. When you get as sick and have as many allergies as I do these come in handy.
• Water bottle. Gotta keep hydrated.
• Snacks. Got to have Crohnsie Bit approved food on hand at all times.
• A knitting/crochet project. Sitting in doctors offices gets boring.

Inside Front Small Pockets

• Extra meds. In case of a global Apocalypse I have enough meds to last two weeks. A month if I can stretch it.
• Hand sanitizer. Tip: If you can score hospital grade you're golden.
• Sunscreen. I had SPF 110 but downgraded to 65 on account of being told by no less than 2 medical professionals it's about 40 SPF overkill.
• Vaseline. This stuff works WAAAAAAYYYYY better than lip balm for dry, cracked lips.
• Cell Phone. It's an LG Rumour that I've had since grade 10 and I only use it for emergencies.
• iPod Touch. It contains my life.
• No less then three requisitions for bloodwork/an ultrasound/MRI/any other tests.
• Calendar with pen. Because I don't trust the electronic version and I'm always in need of a pen.

Side Pockets

• Sunglasses. So I can always looks cool. Also so the sun doesn't damage my eyes any more than CD already does.
• An emergency plastic bag. You have no idea how intricle this is to my bag. With a tummy as sensitive as mine losing your lunch is a real possibility on any given day. This bag strategy has paid for itself numerous times over.

So that's about it. Other than my car keys with emergency hair elastic hanging off of the side.

What's in your bag?
:)

DAY 3: WEGO Health's National Blog Post Month

Day 3 - Advice for new doctors or nurses.

I'm skipping the two choices for topics for the day which are "I don't know about this but I'd like to" and "A post about a conversation with your doctor" and using one of the alternate topics we are allowed to choose. Why? Because it intrigued me. There are many things that I'd like to know about. Let's face it, I'm no Sheldon Cooper. And there are many interesting conversations I've shared with many doctors. But I really want a chance to do this topic and I'm in the right mood tonight so let's take advantage of it. Saturday night FTW!

Kylee's List of Things She'd Like to Tell New Doctors or Nurses:

• I'm not a very outspoken patient. A lot of people aren't. If you're trying to get something out of me please ask specific questions.
• "So how have you been feeling?" is not a specific question.
• I understand more than you think. And if I don't you can bet I'm jotting it down on my mental notepad to go home and Google for three hours when I leave your office.
• Everything you just learned in medical school will probably be of no use to you when you meet me. I'm a complicated case. I've accepted it.
• To the nurse putting in my IV. If you haven't gotten it in in 4 attempts then it's not going to happen. A heating blanket won't help. And neither will digging it around in my hand. Let someone else try. Or call in that IV specialist. It's OK.
• If you give me a new medication I will take it. And take it as prescribed. If it doesn't work it's not for a lack of trying. Once again, I'm complicated.
• Yes. I do have a lot of allergies. No you can't put me on that. Or that either. Isn't there something else? I have no idea if I'm allergic to that. You're trying it? OK. Do you have a shot of Benadryl ready?
• Please please please please please please PLEASE! Redecorate your waiting rooms! I spend more of my life waiting on you then actually in your office. Blue is out. More neutral brown tones are more soothing. Also, upgrade your chairs so they are comfy. Your have no idea what it means to us patients.
• When in doubt, put me on steroids.
• When in doubt if putting me on steroids is a good idea I do not need a CT Scan. I've had three in the last 18 months. Plus more x-rays than you can count. If you give me anymore radiation I'm going to glow in the dark.
• It's not stress. I know stress. I also know how to handle stress. And I do it in my own way.
• I'm also not imagining symptoms. Sometimes your tests just don't work. Face it. And please don't just downgrade everything.

But most of all....

Just listen to your patients. We know our bodies. People with chronic diseases can usually tell if there is something wrong. Work with us.

And thank you for taking care of us.

DAY 2: WEGO Health's National Blog Post Month

Day 2 - Write about the weirdest thing about your health.

I'm not sure where to start with this post. There are a lot of weird things about my health. Some I haven't even posted here but don't worry. In due time young blog readers. Soon.

What I am going to focus on today is not my main chronic illness (Crohn's) but two other conditions that I have just stumbled upon recently. One very recently enough that I don't know absolutely everything about it yet but I think I have enough of a grasp to get my weirdness across.

Low platelets and Hemachromatosis.

When you have low platelets it means that your blood does not clot as it should. Should you get into an accident or get hit with something and get a bruise it could cause your body to bleed longer or in extreme circumstances hemorrhage to death. DEATH! *GASP*

When you have Hemachromatosis it means that your body absorbs too much iron. The normal human body has 3-4 mg. of iron floating around in it at any given time whereas in someone with this condition it can be upwards of 30-40 mg. (I'm currently at about 33 mg.). Your body starts storing it in different organs like your pancreas (causing diabetes), heart (causing palpitations and damage) and liver (causing extensive damage and death.) MORE DEATH! *DOUBLE GASP*

The reason I find these two ailments coexisting simultaneously is because the "cure" for low platelets is to not bleed or get hit or kicked or basically do anything to cause yourself to hemorrhage while the "cure" for Hemachromatosis is to expel as much blood from the body as possible without exsanguinating the patient in order to draw the extra iron from the organs by making new blood.

Get it?

One doctor tells me to do everything not to bleed and I turn around and another tells me to give it away to any medical professional with a tourniquet.

And they wonder why I'm skeptical and reserved....

The one ray of sunshine in all of this bloody mess is that the low platelets seem to only show up right after Remicade infusions so if I time it right I have a good two week window in which to kill my blood supply before my platelets run hiding in the corner from the big bad Infliximab.

Oh I need a lot of mental help.
Then again maybe not.
:)

 

 

DAY 1: WEGO Health’s National Blog Post Month

Day 1- “Why I Write About My Health”

Thought I was done with month long posting didn't you? Nope! I am now going to be participating in WEGO Health's Blog Month all November long. Everyday I have a choice of two topics/questions/images/ect. to choose from and I must post about it. So here I go....

Today's topic is "why I write about my health". And coming off of an entire month of posting I am going to take some creative liberties and go jot form and start off slow.

Reasons why I write about my health....
~To share my story with others who are fighting chronic diseases. And to inspire them.
~To meet others who have chronic diseases. And have them inspire me.
~To chronicle my journeys for myself. I never have been much of a private journaler. I tend to forget about it if I'm not accountable to someone/something.
~It releases stress. Until you pour everything into words and throw it out there you'll never know how good it can make you feel.
~And let's face it. Everyone and their dog has a blog nowadays. Who wouldn't want one?

Just a small post tonight but I'll be back at it full swing tomorrow....