Invisible Illness Week Post 2: What Are the "Invisible Symptoms" of CD?

So I'm sure if you read my blog regularly you know all about my symptoms. The thing is that a lot of these symptoms I mention are physical manifestations of my CD. I don't mention the invisible ones too often.

We all know about the diarrhea, weight loss, vomiting and the general look of someone who looks like they've been run over by a Mac Truck.

Ya. Ya. Ya. I know right.
Well now I would like to take you past the look of an outsider and into the body of a CD warrior....

Abdominal Pain: Some of this can be physical. But when it is you have no idea what we are going through on the inside. The best way I can explain it is if you take your right hand and make a fist. Then take that fist and dig it into your right side above your pelvic bone but underneath your bottom rib. Then lean to the right. Does it hurt? Probably a lot right? Get used to it. It will the rest of your life. And sometimes on both sides. Good luck!

Fevers and Chills: While this can be noticeable for others what is on the inside is always worse. One minute you feel like someone lit your insides on fire. With a BBQ lighter. And a gallon of butane. And then just as fast as the fire started the trucks show up and douse it. With ice water. And that foam stuff that sticks to everything. And no matter how many hot water bottles you boil, blankets you get or Snuggies you pile on yourself you feel like you will never be a comfortable 98.6 ever again. Get used to it. And stock up on tank tops and fleece.

Loss of Apetite and Nausea: Ever been so hungry all you wanted was to eat a cracker? I have. Ever eaten that cracker and before you even swallowed the whole thing it was coming back up? I've done this. Does this make you want to eat? Probably not. Still want that tomato soup for dinner? Didn't think so.

Bone and Joint Pain: Remember everything I said about the fever/chill thing? All applies here. But in your bones and joints. Which is even worse. Because no amount of blankets can fix your joints. Throw in some nice crunchy beach sand and you have yourselves a concoction for misery and pain. And not to mention you are in a constant battle with your immune system and already fighting arthritis. Getting to much? Hold on there's more.

Hemorroids: Speaks for themselves....

Fistulas and Anal Irritation: They are not pretty but they are a fact of life for us Crohnies. A fistula is a passage that your body makes that your connects your intestine to other organs or even the outside of your skin. And while I've never had one myself I have friends who have and let me tell you it is painful. And the surgeries to correct them are even worse.

Throat and Mouth Ulcers: Remember when you were a kid and you got Strep Throat? You would feel like absolute crap? Then mom would drive you to the good old family Doc. and he would prescribe you some antibiotic with a fancy name. An within two days you would be so miraculously healed it would be like it never happened? Doesn't sound too bad right? Now take it back two steps to where you feel like crap. But this time you can't go to the doctor. He already knows anyway. No antibiotic can cure this. You just have to live on freezies and fudgecicles until it passes. You may want to pick some up when you go and buy those tank tops and blankets I mentioned earlier to keep on hand. Remember, it can happen anytime and for as long as it wants. So be prepared.

Eye Inflammation: Pink eye? Nope. Allergies acting up again? Natta. Oh you didn't sleep well? Try again. It's just another horrible symptom of CD. It's pretty hard to look someone in the eye when they are so puffy and inflamed you can barely open them. And just stop using those allergy eye drops. They're not fooling anyone, including yourself. Steroid drops are where it's at.



That's just a few of MANY invisible symptoms of CD. So next time you see someone with CD and think to yourself, "Oh they look a little off today" just imagine the hell they are fighting inside of their bodies. If you can see it, it's at least 10x worse on the outside.
I guarantee you.

Invisible Illness Week Post 1: What IS Crohn's Disease?

This is how the Crohn's and Colitis Foundation of Canada describes Crohn's Disease....

"Crohn’s disease (CD) is named after the doctor who first described it in 1932. (Since he did not have the disease itself, it is sometimes more accurately called Crohn disease).
The inflammation from CD can strike anywhere in the gastrointestinal (GI) tract, from mouth to anus, but is usually located in the lower part of the small bowel and the upper end of the colon. Patches of inflammation are interspersed between healthy portions of the gut, and can penetrate the intestinal layers from inner to outer lining.
CD can also affect the mesentery, which is the network of tissue that holds the small bowel to the abdomen and contains the main intestinal blood vessels and lymph glands.

What are the Symptoms?

Since CD can be located anywhere in the GI tract, symptoms can vary. On the whole however, they often include abdominal pain, cramping, diarrhea, nausea, vomiting and not surprisingly, weight loss and lack of energy.
Crohn’s disease is a chronic (lifelong) illness. People who have CD will experience periods of acute flare-ups, when their symptoms are active and other times when their symptoms go into remission. The average risk of a flare-up in any one year is approximately 30%.
In 25% of those with CD, perianal disease may also develop. “Peri” means “around” – therefore perianal disease is located “around the anus”.
Specifically this means that a person could develop:
painful, swollen skin tags (that appear to be haemhorrhoids but are not)
abscesses (bags of pus created inside the body as a result of infection)
fistulas (infections that have tunneled from the abscess to a hollow organ such as the rectum or vagina).

There is no cure for Crohn’s disease - yet."
(http://www.ccfc.ca/site/c.ajIRK4NLLhJ0E/b.6349429/)

Sure....

But as a CD warrior I can tell you that while the CCFC means well, they are clueless when it comes to the true symptoms, both physical and emotional.

This is how I describe it....

Crohn's Disease is like a girlfriend after a bad breakup and you are the boyfriend left wondering what you did wrong. Your immune system attacks you for no reason. I suppose there is a reason but scientists have yet to discover it. Periodically your intestines turn into the inside of a cantaloupe and this causes a lot of pain. You also get canker sores on the inside of your mouth and throat, much like if you get Strep Throat every eight weeks but can't have anything for it. Then there's all of the bathroom trips. Ever had food poisoning? The kind with the really bad, and yes I'm going full disclosure on this one, diarrhea? This happens to me all of the time. Before I was diagnosed it could be upwards of fourteen times a day. That's a lot of potty time! And it's not just the "D", it's the nausea and vomiting that comes in the neat little package that is my gastrointestinal tract. What they also don't tell you is that it's not just your "G tract" it's everywhere! It's like the girlfriend from hell! Not only is she stalking you, she slashes your tires and comes after you with a machete (AKA your immune system attacks your muscles, bones and joints as well). Sometimes it feels like there is sand in your joints and getting out of bed seems like running the New York marathon. This whole disease is like a constant marathon. It's exhausting. And I know I've missed a lot but there is still so much more, I've barely scratched the surface.
I think this is a good jumping off point....

Invisible Illness Week....

September 10th-16th is Invisible Illness Week.
As a Crohn's Disease warrior (never sufferer) I completely understand and support this awareness campaign. My symptoms are very much internal and you can't always tell how I am feeling from my attitude. I try very hard to not burden others with my pain. I know a lot of people who could never handle my daily struggles. One time when I was in the middle of a flare I ran into someone at a store and later on that day my mom was talking to that person on the phone and that person could not believe that I was really that ill when they saw me. I try to hide it very well.
This week is very important to me and in honour of it I am going to try to do a different health/something you may not know about Crohn's Disease post every night.
Keep fighting the invisible fight!
:)

Doin' the Math....

Working at daycare - big kids going back to school + mat. leave moms going back to work - four junior kindergartens all leaving sporadically + a cold = one tired Kylee after only working four days.
So no witty posts tonight.
Just a gratuitous picture of me at the beach.
Oh how I miss it....

Why I Now Buy 3 Ply Kleenex....

I, like most have used 2 ply Kleenex all of my life. This is the way it has always been and I never thought to question it.

Until recently.

I JUST discovered 3 ply Kleenex and all it has to offer. And let me tell you, it's a 180 degree turn around from what I now classify as "Kleenex that is the equivalent of the toilet paper at the mall" (2 ply) Kleenex. It just works so much better!

When I used to used the thin stuff (really, it was literally two weeks ago) I'd have to use two or even three of them TOGETHER to blow my honk of a nose. Keeping in mind that I have allergies and a suppressed immune system. The mornings around my house are very loud. Truly it all sounds like we have SARS.

Not anymore. One, maybe two and I'm done. And I love it. I don't feel like I'm wasting half the box just to not get my boogers on my hands.

Despite there being less in a box they last me twice as long. And this makes me happy. So thank you 3 ply for making my life that little bit easier, especially at my time of need AKA the wretched cold that now possesses my body!
;)

Why I hate Tegaderm....

This happens.
Every time.
And this is after washing my arm three times and then having a shower....

If Not Now Then When????

In early spring I was watching "Live with Kelly" one morning and they had a fitness segment. This fitness segment featured Kelly, an instructor and another co-host. Now I'm not sure who this particular co-host was because all I can remember them doing was strapping these "boot things" to their feet and using them to jump for exercise. I thought, "Wow! Those things are really cool. They look like a lot of fun."
Anyway I forgot all about them for a few days and went on with busy life (you know how it goes). Then I was watching the "Live with Kelly" tape on the weekend with my mom as we usually do because she does not get to see them during the week (we still have a VCR and tapes, sue me) and I saw them again. My mom said they looked cool as well. So I raced onto my laptop and punched in the website that they had said on the show and long story short (and about $400 out of my wallet) I was the proud new owner of my very own set of Kangoo Jumps (minus the 3-6 weeks wait for shipping).

I waited ever so patiently and finally they arrived in mid-May, I believe. I strapped those puppies on and went walking through my house as they tell you to start off doing. And after a little while and nearly breaking my neck by falling down the stairs I thought I had it mastered.

So I went outside.

This was the mistake. The ground inside is very uniform and clean. The road/sidewalk/grass/patio stones are very bumpy and sporadic. I did not feel comfortable on them outside.

So they got put in the corner of my room where all the hair brained gimmicks I fall prey to go, such as knitted blankets that only ever get half finished, girls hair bows that are only three quarters glued and those stacking cups that were the big fad a few years ago. They sat. And they sat. And they got moved to another corner when I had to dust but quickly got moved back to their home in the perpetual "Oh I'll get back to that" corner.

Until today.

So let me just start by saying that I've had a few things happen in my life in the past few months that have caused me to start thinking "If not now, then when?" more often then the prior.

So I made a decision to use these today. But where to go? Surely I should stay close for fear of falling (remember I've only been on these about three times totalling about 30 minutes). Then it came to me. I would walk to the library to return a rented DVD. 3.4 kms from my home. Each way. All uphill on the way back. In 28 degree, 34 with humidex weather.

Hmmmmm.....

After a debate with myself in my head "If not then when?" Kylee took over and the pilgrimage to the library began. I made it there in about 40 minutes. Which is great, but it was all downhill. I returned my movie and perched myself on a bench in the shade and proceeded to text my mother to come and get me. After 5 minutes and an "If not now then when?" attitude take over I had cancelled that text and found myself making the uphill trek back home. I had to stop more. Way more. But I made it. I even took the long way. And I am proud.

I walked a total of 7.2 kms. On achy legs. And joints that are swollen. And a Crohnsie Bit who has taken to revolting. All that need Remicade.

And I still did it with a smile on my face and waved to everyone that looked my way.

And I am proud.

A Weekend for Aly....

I wrote this to Aly on April 30th 2012....

"Here's my proposition to you. For your birthday in August we pack my little green car FULL of camping gear, crank the tunes on the iPod and just keep driving north until we hit a cool campground. Hang out and get lost there for a day or two until we are made to come back to our normal lives?
I thought about a hotel room before a realized that we are both hillbillies at heart and we would probably like sleeping in a tent more.
I've decided that I need more life experience and breakaway from my home if I ever expect to get anywhere in life.
So what do ya say? You up for a few days with me most likely not showering and smelling of campfire and wilderness? Or would you rather just hit a hotel room with a pool and stinky blue cheese?* You pick!!!!"

She replied in her usual funny way that I was right and we should definitely plan such an outing.

Unfortunately she passed away on June 22nd of this year.
We never got to follow through with our plans.

I took some time to grieve.
And it was hard, as I assume saying goodbye to a best friend always is.

But then on a particularly emotional night I remembered this conversation. About going camping. And I thought she would still want me to go. She would want all of her friends to go. And so "Aly's Camping Extravaganza" was born into a Facebook event.

All of her friends were invited but only 6 of us made it to the big day.


We went to the Awenda Provincial Park. It was beautiful. My first thought? "Aly would have loved this."

We set up our tents (after an hour wait to get a spot. Whoops! Forgot to make reservations!) Notice my massive tent that could eat the other three tents for breakfast.

 

After we got all set up we went for a swim and took some silly pictures with our awesome Aly shirts!

We had dinner. Prepared by the lovely "K" himself!

 

And then we went back down to the lake for the most beautiful sunset that has ever befallen my eyes....

 

And of course some more silly pictures. Some of which actually turned out pretty nice....

(Note that a lot of these pictures involved balancing my new $700 camera on an unsteady rock. Ya, it took quite a bit of restraint on my part for that to happen).

 









And what would a camping trip be without a campfire, s'mores, a few drinks and a cute dog? Am I right?

 

 



 

 

The next morning we woke up, had pancakes, cleaned up and it was all over. 24 hours with friends is just not long enough!

 







Thank you so very much Awenda for providing me and my friends a place to go and remember our friend. It was truly a trip to remember.

Thank you to my friends that went on this amazing trip. This has been a very hard two months to get through but somehow we have made it together. My promise to you is that I will NEVER take our friendship for granted. I think we should make this at least a yearly thing. And also longer next time. If there is one thing that Aly has taught us all it's that life is short, you need to take interest and joy in even the most minute details such as the way a leaf crunches beneath your feet or a flower grows towards the sunshine.

And my dear Aly. I want to thank you most of all. Thank you for the beautiful weather we received. I know that little rain storm in the middle of the night was just to let us all know that you are still here. Very funny by the way, ha ha. Thank you for the beautiful sunset. It was truly magnificent and I know you had a hand in it. But most of all thank you for being you. Right up to the end. And as always.

 

We love you!











*We stayed in a hotel room while helping for a wedding in 2010 and the stinky blue cheese is an inside joke.

 

Just A Teaser....

....until I get the time to write what I'm sure will be a very lengthy post.

A Day For Aly....

You loved camping.
I'm sure you still do.
You are probably there now.
Roasting marshmallows by a roaring fire.
We are coming Bubba.
A camping day for you.
I know you'll be there too.
Please help us to have fun.
And do this for you.
Just like the old days.
I.
Love.
You.