Invisible Illness Week Post 3: Appearances....

Appearances can be confusing. They can also be misleading. If you were to see me on the street and say hello you would never know what I have or haven't been through in my life or day. In much the same way as I do not know about you. It is not until we sit down and truly discuss what makes us different (or the same) that we can understand and appreciate each-other's journeys. I'm not saying my life path is on a downward trajectory that is one day going to reach oblivion and I will have no choice but to curl up in the fetal position and die. Not at all. What I mean is that I may have more ups and downs in my life than the average person.

Take the spoon theory. I've posted a link before but for those of you that have never heard it I will briefly recap (but I suggest reading the whole thing for yourselves for the full effect).

The spoon theory says that everyone wakes up each morning with an allotment of spoons. Some have more and some have less. Those that have a chronic illness tend to have less. Every time you must perform a task you lose a spoon and once your spoons are gone you are done for the day. This isn't a major problem for most "normal" people as they have an abundance of spoons to get up in the morning, go to work, pick up the kids, make dinner and still have enough to walk the dog and clean the house. But us invisible illness sufferers have to pick and choose when things get done. If we cook dinner tonight will we be too tired to eat it? If we clean the house will we have to skip tucking our kids in to bed? Budgeting your spoons is a very delicate task.

As of late I have been very blessed with my spoon allotment. There seems to be enough to go around work, school and even some left to get ahead on homework and projects.

So next time you see me on the street don't just assume that I'm being a snob and don't want to get coffee with you. Maybe I just can't afford a spoon loss that day.

Invisible Illness Week Post 2: Doctors....

I owe my life to my Gastroenterologist. She single handedly brought me from a very frail, can't keep any food down, 117 pound withering mess to a healthy, enjoy (most) foods strong enough to enjoy life patient. And as much as I hate the stigma "patient" brings I'd rather be a "patient" than a "corpse" of a person that never got to enjoy her life.

Dr. P is my Gastroenterologist. She is a great doctor that truly cares for her patients. I can't count the amount of times that I have come home to a message on my machine that my labs have come back wonky and she has left a prescription at my pharmacy to correct the problem. She is very accommodating.

Take today for example. I had an appointment with her and at the end of my appointment I was mentioning that I am doing a project about Crohn's Disease for school and she gave me pictures that she had taken at my first colonoscopy to share.

My advice when dealing with an invisible illness is to find yourself a really good doctor. I have and it really does make your life that much easier.

Invisible Illness Week Post 1: Invisible....

My invisible illness is Crohn's Disease. It is  called invisible because you can't see it as you can, say the big red target that is Lyme Disease. Instead, the only way for you to know that I am different than you, your spouse, your parents or your neighbours Paul and Betty down the street is for me to tell you. 

Well here I am. All 160 lbs. of me. And I'm alright with that weight. It means I have been eating. You see quite often there are days when I don't eat. It actually gives me pain to eat. This is called an invisible symptom. And while it is invisible for you it is quite real to me. Think of it like this. Imagine you had to go about your day with a very infected finger nail. The really annoying kind that throbs, is red and you can feel your heartbeat in.  And every two hours you had to go to the sink and pour rubbing alcohol on it. While it may hurt and sting your finger while you pour and for a little while after it is what's best for your body.

This is what Crohn's is like, only 10,189,748,829 times worse.

Now imagine that fingernail is the whole right side of your abdomen, front and back, and you are coming up to the two hour mark. You are dreading even the thought of having to eat and even though you know it's not what's best for your body you skip eating anyway. This is the invisible struggle. To eat or not to eat. I ask myself this every minute of everyday. But I have been blessed as of late. Lately I have been feeling good, eating well and keeping that "finger" pain in check.

And such is the unpredictable and sometimes irrational life of a Crohnie....

:)

Invisible Illness Week 2013

This week is Invisible Illness Week.

As last year, I plan on participating. There are some prompts that have been set out for participants and I am going to do my best to uphold them. I might be juggling them around a bit as I have a special day coming up on the 15th.  See you tomorrow everyone!

:)

Remicade-versary!

Happy 2nd Remicade-versary to me!

:)

My First Non 90....

I never liked high school. My grades were rarely to never good. I think I finished my high school career with an overall average of about 62%.

My current college overall average is 96% and I've never gotten anything below a 90%.

Today I got 86% on my practical assessment.
And I'm angry about it.
It was stupid questions that I knew too.
Oh well.
Accept it, shake it off, and study my butt off for my exam on Friday.


Keep on smiling and don't be so hard on yourself.
:)

A Bigger Favour Could Not Be Asked....

If everyone could do me a HUGE favour I'd like you to watch the video I and two of my classmates have made. We are trying to win a contest put on by the OSMT(The Ontario Society of Medical Technologists) and we worked REALLY hard on it. Every share, like and view on YouTube gets us closer to winning!

A super massively huge big ginormous thank you!
 
*WARNING: Keep in mind that I am in a medical school program. If you're squeamish about needles this may not be the video for you.

http://www.youtube.com/watch?v=9AK3llsnxbc

One Whole Year....

....has passed since you've been gone.

It's strange. When you first left I feel like I was put through the full gamut of emotions. I was in shock, angry, guilt ridden, annoyed, and somehow relieved. All of the emotions one would expect to experience in such a situation. I think I cried more between the dates of June 25th and July 7th 2012 than I have in the entirety of my life. My heart had also never felt so broken and so joyous either. Knowing that you were in another place, a happier place saddened me and made me smile at the same time. All of the heartache you had to endure still weighs heavily on me to this day. I feel like I could have done more. I feel like I could have helped you. But mostly I just feel like I wasn't a good enough friend to you.

Now I realize that if you were here you would stare at me with that blank look on your face, maybe scrunch up your nose in that funny little way that indicated that that was the most absurd statement I could ever come up with at that present moment. But it's true. And even a year of mixed and mangled emotions can't ever change it.

It's strange. I feel like the tears I want to cry while writing this aren't coming but like they are superficial tears that are preventing the real ones from coming. Maybe it's my subconscious knowing that that would mean a sleepless night and I have a lot to do tomorrow.

School is so hard Bubba. I wish you were here to talk to. Family is family but I miss the way that you could spin everything into a way that made me understand and appreciate. I know you would volunteer to come into my classroom to be a ginny pig for my awesome phlebotomy skills (even if you did hate needles).

I have been trying to push off this post all day. I didn't know how I was going to start or end it. I was hoping that I would forget, be too busy, what have you but nevertheless here I am an hour later still writing. So this is how I will end my one year later post.

With a song and an elephant. Given to me by my friend's mother on the one year anniversary of her death.

I love you Aly Bubba.

And I'll never stop, or forget.

http://youtu.be/oozQ4yV__Vw

The Doctor Called....

.... and left a message on my cell phone. There's something wrong with my bloodwork. Anyone want to place bets? WBCs, platelets or iron saturation? #crohnsproblems #remicadeproblems #hemochromatosisproblems 

P.S. You can follow me on Twitter. @ChaoticKylee

Updates, Updates and....... Updates!

I feel like such a bad, terrible, horrible, no good, very bad blogger. I have been totally neglecting my readers and it makes me sad. And I'm not even going to try to say that "I tried" and "I was just so busy with school and homework and yadda yadda yadda...." because honestly, even though school is incredibly hectic, and stressful and everything you sign up for, I probably do still have time to blog. Maybe not everyday, or even every second day, but I know I should be able to be on here at least once a week updating my life. Not just for all of you but as a record for myself. Kind of like an electronic diary that I can look back at what I thought was important at one point of my life or another. I miss it....

UPDATES:

Blog Makeover: I have made over the blog layout for spring and I tried a little something different with the header. Let me know if you like it. Personally I think it is a bit tacky but I have been assured it's good. Here's hoping. Also, the background is now a road because I am currently booking it down the highway of life at mach 328980945959492104 and boy does it feel good. I thought it tied in nicely with the corny header. *SIGH*

School: School is awesome! It's so fun, I can't get enough. I work ahead and even start studying different modules before the class starts studying them. I have poked a fake arm too many times to count now. I have about 27 tubes of water that I have drawn off of "Bobby" the fake arm (although we think his name should be "Armand"....) On Tuesday I get to do my first real draw! EEEEE!!!! I'm so incredibly nervous, excited and petrified at the same time! Am I qualified to do this? I don't know but I'ma do it anyway. We also did Capillary Puncture. It's when you take an incredibly sharp object and poke your finger with it and squeeze tubes of blood out, who knew? I've got Order of Draw down pat and what each tube contains and does, just not how many times to invert the tubes but that should come in time. Did you know that each tube has different effects on a blood sample? I do now! So great. I will update regarding my first REAL draw after I do it. Bobby says I'm smooth as silk but we shall see.

Health: Surprisingly I've had no really bad pain since school started in January. Mini flares but nothing a night of rice and Gatorade can't extinguish. I thought for sure all of the changes in schedule, timing and workload would send me for a good loop. It could not be more opposite. I'm so proud of my body for adjusting. Of course Remicade helps too. ;)

Work: ....is work. It's daycare. It's tiring. Kids are hilarious. Same old, same old.

<- u="">Sidebar:
If you look over to your left you will see that I added a small ticker entitled "Kangoo kms. Counter". I have set myself a goal. By the end of summer I want to have jumped 100 kms. on my Kangoo Jumps. No real reason other than I need to exercise and if I don't set myself a goal and be accountable I will never get down to business. I started on May 3rd and I will be done before the first snowfall. Follow along if you wish. I'm at 10.3 as of tonight. I will update as I go along.
One last thing,
Happy World IBD Day!

 



Keep smiling! (And blogging. I really need to remember that one....)
;D