*I PLEDGE THAT EVERY DAY IN OCTOBER (BREAST CANCER AWARENESS MONTH) I WILL POST A FACT ABOUT CROHN'S DISEASE TO RAISE AWARENESS FOR CD*
1.Canada has one of the highest rates of IBD in the World.
2. The most common age to be diagnosed is anywhere between 15 to 25 but approximately 10% of those with Crohn's disease are under 18 years of age.
Tuesday, October 2, 2012
Monday, October 1, 2012
Why Purple Will Never Be As Big As Pink....
October is Brest Cancer awareness month. Yesterday my town held 26th annual Walk for Breast Cancer. There were 1,800 participants in my town and $390,000 was raised in my province. The Crohn's and Colitis walk in my area had nowhere near that much support.
I realize that Breast Cancer (or any type of cancer for that matter) and IBD are two totally and completely different illnesses in the world. And before I go any further I would like to state that I am not downplaying Breast Cancer. My Aunt had Breast Cancer. I watched her go through chemo and radiation. I reluctantly helped pull out tufts of her hair. I watched her puke and have more life drain out of her everyday. I know. Cancer is horrible. I get it. I have lived it.
That being said I believe that Crohn's Disease is never going to be as publicized as Breast Cancer.
It's not anyone's fault. Crohn's Disease is a very internal thing. You don't loose all of your hair. You don't have to go through a rigorous chemo and radiation schedule. Some people don't have to have a "major body changing surgery". This is the attitude.
What some people don't understand is that yes, a lot of CD patients do have to go through these things. And they don't end. Yes our hair falls out, but slowly so you can't tell because we change up our hairstyle. No we don't have to go through chemo but we do have to get Remicade. And guess what? It doesn't end as chemo does. And yes we do have surgeries. And while you may no longer have boobs we now poo through our stomach into a bag. It's not fun.
So I guess the major difference is....
Breast Cancer is a "short term/intense battle" that either ends in death or remission. And in five years the majority of patients know wether or not they need to worry.
Crohn's Disease is a "long term/marathon" endurance that is unpredictable and never ending. After five years chances are patients have been in and out of the hospital(numerous times) and are still not better. We can never let our guard down.
And that my friend is why purple will never be as pink....
*I PLEDGE THAT EVERY DAY IN OCTOBER (BREAST CANCER AWARENESS MONTH) I WILL POST A FACT ABOUT CROHN'S DISEASE TO RAISE AWARENESS FOR CD*
1.Canada has one of the highest rates of IBD in the World.
I realize that Breast Cancer (or any type of cancer for that matter) and IBD are two totally and completely different illnesses in the world. And before I go any further I would like to state that I am not downplaying Breast Cancer. My Aunt had Breast Cancer. I watched her go through chemo and radiation. I reluctantly helped pull out tufts of her hair. I watched her puke and have more life drain out of her everyday. I know. Cancer is horrible. I get it. I have lived it.
That being said I believe that Crohn's Disease is never going to be as publicized as Breast Cancer.
It's not anyone's fault. Crohn's Disease is a very internal thing. You don't loose all of your hair. You don't have to go through a rigorous chemo and radiation schedule. Some people don't have to have a "major body changing surgery". This is the attitude.
What some people don't understand is that yes, a lot of CD patients do have to go through these things. And they don't end. Yes our hair falls out, but slowly so you can't tell because we change up our hairstyle. No we don't have to go through chemo but we do have to get Remicade. And guess what? It doesn't end as chemo does. And yes we do have surgeries. And while you may no longer have boobs we now poo through our stomach into a bag. It's not fun.
So I guess the major difference is....
Breast Cancer is a "short term/intense battle" that either ends in death or remission. And in five years the majority of patients know wether or not they need to worry.
Crohn's Disease is a "long term/marathon" endurance that is unpredictable and never ending. After five years chances are patients have been in and out of the hospital(numerous times) and are still not better. We can never let our guard down.
And that my friend is why purple will never be as pink....
*I PLEDGE THAT EVERY DAY IN OCTOBER (BREAST CANCER AWARENESS MONTH) I WILL POST A FACT ABOUT CROHN'S DISEASE TO RAISE AWARENESS FOR CD*
1.Canada has one of the highest rates of IBD in the World.
Monday, September 24, 2012
Apparently Size Does Matter....
Yesterday I accomplished one of my bigger goals in life. I purchased a double bed.
Now one might say that it is a tad large for my room (it takes up 3/4 of the floor space) but numbers don't lie.
Since May I have been using an app I downloaded on iTunes named Sleep Cycle. You put it under your top sheet when you sleep and it records how, when and what quality you sleep. It gives you graphs, numbers and percentages telling you all about your movements in your sleep.
Below are two sets of numbers. One from a couple of weeks ago and one from last night.
Based on the sleep quality percentage I'll take less floor space and a better night's sleep any day of the week.
;)
Now one might say that it is a tad large for my room (it takes up 3/4 of the floor space) but numbers don't lie.
Since May I have been using an app I downloaded on iTunes named Sleep Cycle. You put it under your top sheet when you sleep and it records how, when and what quality you sleep. It gives you graphs, numbers and percentages telling you all about your movements in your sleep.
Below are two sets of numbers. One from a couple of weeks ago and one from last night.
Based on the sleep quality percentage I'll take less floor space and a better night's sleep any day of the week.
;)
Saturday, September 22, 2012
Everything Has A Consequence....
Last night my arms and hands were sore. But I chose to knit. I wanted to finish a couple of dish cloths that I was making for my friend for her new house. I worked on them for about four hours straight.
That was a mistake.
Needless to say I woke up with my hands like this....
That was a mistake.
Needless to say I woke up with my hands like this....
Ya. Everything has a consequence. I learned that the hard way today.
And that auto-immune diseases suck....
Tuesday, September 18, 2012
8 to 6....
Are basically the hours I work. Incidentally it's also the number of weeks I used to go between Remicade infusions and the number of weeks I now go between Remicade infusions.
I had a good old chat with Dr. P. this afternoon. We discussed my symptoms, when and why I probably have them and decided to nyx the last two weeks off between infusions. Also, I now get bloodwork done with the infusion. So yay for one less poke!
I had a good old chat with Dr. P. this afternoon. We discussed my symptoms, when and why I probably have them and decided to nyx the last two weeks off between infusions. Also, I now get bloodwork done with the infusion. So yay for one less poke!
Sunday, September 16, 2012
Invisible Illness Week Post 7: Recap and What Have I learned....
Thing I have learned thus far....
-Never be too far from a bathroom.
-People don't understand. And can be mean.
-Healthy people don't realise how good they have it.
-Working is a privilege.
-Friends are good. They help you through. But if they pressure you outside of your healthy zone you don't need them.
-The best way to learn about your illness is through doctor dramas.
-Sleep is good but resting will suffice.
-Know my limits and accept my new reality. It's permanent.
-Crohn's Disease doesn't have to control your life.
I would now like to take just a minute to thank everyone who has been following along with me this Invisible Illness Week. I know a lot of you have chronic illnesses yourself. I speak for everyone that lives day in and day out with pain and a social stigmatism because they are different. We are saying, we are just like everyone else. We work. We have bills. We love. We have families that would do anything for us. Even more if anything. They take us to appointments and hold our hand in the hospital. We couldn't live without them.
Recently I stumbled upon a song by the band "FUN". It's called "Carry On" and the end of the song is what really strikes a cord with me. The lyrics are....
-Never be too far from a bathroom.
-People don't understand. And can be mean.
-Healthy people don't realise how good they have it.
-Working is a privilege.
-Friends are good. They help you through. But if they pressure you outside of your healthy zone you don't need them.
-The best way to learn about your illness is through doctor dramas.
-Sleep is good but resting will suffice.
-Needles are not as scary as they used to be.
-Neither are IVs.
-But 24 gauge needles hurt less.
-But 24 gauge needles hurt less.
-Prednisone is both good and bad. But I will endure the side effects to be pain free.
-I hate pills with a passion. Big or little. I hate them all.
-Barium was invented by someone who never ever ever had to have nuclear imaging.
-It's better to eat smaller meals rather than larger ones.
-Drink a lot. But no alcohol. Water is best but Ginger Ale settles stomachs.
-Pride and modesty go out the door when gastroenterologists get involved.
-Bad days are bad but good days are better.
-Bad days are bad but good days are better.
-While gaining momentum in the world Crohn's Disease will never get as much publicity as cancer. Which makes me sad.
-I'm not the only one with this disease but I am the only one who deals with it in the way I do.
-I realise that over half of people diagnosed with severe Crohn's Disease have to have surgery within 5 years of diagnosis. And that the odds are not in my favour.
-If you can't handle it try harder.
-I will relapse. It is inevitable. And I am prepared and OK with that.
-Know my limits and accept my new reality. It's permanent.
-Crohn's Disease doesn't have to control your life.
I would now like to take just a minute to thank everyone who has been following along with me this Invisible Illness Week. I know a lot of you have chronic illnesses yourself. I speak for everyone that lives day in and day out with pain and a social stigmatism because they are different. We are saying, we are just like everyone else. We work. We have bills. We love. We have families that would do anything for us. Even more if anything. They take us to appointments and hold our hand in the hospital. We couldn't live without them.
Recently I stumbled upon a song by the band "FUN". It's called "Carry On" and the end of the song is what really strikes a cord with me. The lyrics are....
"....Cause we are
We are shining stars
We are invincible
We are who we are
On our darkest day
When we’re miles away
Sun will come
We will find our way home
If you're lost and alone
Or you're sinking like a stone
Carry on
May your past be the sound
Of your feet upon the ground
Carry on
Carry on, carry on"
We are shining stars
We are invincible
We are who we are
On our darkest day
When we’re miles away
Sun will come
We will find our way home
If you're lost and alone
Or you're sinking like a stone
Carry on
May your past be the sound
Of your feet upon the ground
Carry on
Carry on, carry on"
These are our lyrics. These are our fights. This is our daily struggle.
So to end off this week I'd like to share a little inspirational video I whipped up this afternoon. I hope it inspires you to keep fighting. See you next year Invisible Illness Week!
Saturday, September 15, 2012
Invisible Illness Week Post 6: Happy 2nd B-Day LCB!
It was two years ago today that I was diagnosed with Crohn's Disease and thus Little Crohnsie Bit (LCB) was born. It was the best and worst day of my life all rolled up into a huge prednisone emotionally driven plot point in the story of my life. This is the story of his birth....
It was a Wednesday. I remember it very clearly. Wednesdays were always and have always continued to be my least favourite day of the week. Bad things just tend to happen then. Anyway, I remember it being slightly overcast but still warm. I was still able to wear a t-shirt despite it being the middle of September. Of course I brought a sweater just in case. I like to be prepared and when one is going into the hospital having been gravely ill for three weeks straight and just gone through a three day colonoscopy prep all culminating in losing as much weight as a small child one tends to get chills and hot flashes at the drop of a hat.
My mother dropped me off at the door and then went to park the car. And while sitting on the bench I remember smelling something sweet. I turned around to see a farmer's market benefiting the hospital behind me. They were selling fresh fruits and veggies. This sticks out in my brain because I recall thinking to myself my lack of desire for food, especially these foods and if I would ever eat again. Yes, I felt that sick. And yes. My suspicions were right. In two short hours my world would change.
My Mama came back to retrieve me and I entered the place I had both come to fear and worship. After making another trip to the washroom and ridding my bowels of the final excrement they had managed to hold onto I made my trek up to the second floor. My memory is recalling a joke my mom said about taking the stairs. I just shot her a look. We took the elevator.
Upon reaching the second floor I remember seeing that it was under construction and there were new check in procedures. This made me nervous. I don't do well with new situations and the fact that this was not what I had researched made me even more anxious. So anxious in fact that I got put to the front of the line, bypassing a two hour wait time because of fear of me fainting or my heart exploding from Tachycardia. Apparently a 20 year old isn't supposed to be 105 pounds without being confined to a gurney so she doesn't get hurt. IVs are also particularly difficult to place when you are so dehydrated I have come to realise.
So to catch you up to speed. In the hospital. Tachycardia (fast and irregular heartbeat). 5 IV attempts. 105 pounds. Told to not get up off of the bed for any reason. Rolling into a colonoscopy theatre to meet my Gastroenterologist....
I don't really remember much more after this. I met my wonderful Dr. P. She asked me a lot of questions, none of which I can bring to the front of my mind. But I remember it being cold. I also remember my mom putting my hair into a ponytail. I remember this because I love my mom and after 5 IV attempts your arms are pretty beat up and not really usable. And the anesthesiologist putting the oxygen in my nose. And it being laced with some happy gas. Next was the white fluid. It hurt going into my arm. This I remember most of all. I remember an "ow" escaping my mouth and being turned onto my left side. As I was slipping away the last thing I recall was them telling me to lift my head to put the mouthpiece in as I was also getting an endoscopy....
Then came blankness.
....until 45 minutes later. They only gave me enough drug to last twenty. Let me reiterate. I was very sick. And tired. Oh so tired. After slipping in and out of consciousness for another ten minutes the nurse took charge and demanded I get up. Well I showed her. After five minutes and a fainting episode I was comfortably back in my bed sleeping it off. When I finally came around I had some Gatorade. And then Dr. P. came in and gave me the news the would change my life forever.
"You have Moderate to Severe Crohn's Disease it three spots." She said. And even in my Propofol hazed state this image is burned into my brain and always will be. She drew me a diagram. She showed my where I had a patch of moderately inflamed tissue in my descending colon. She showed me another patch in my transverse colon. She showed me where I was so badly inflamed she could not even get the scope into in my Ileum. And then she told me what I will absolutely never ever EVER forget. "If you had waited until October 4th (my original scope date) you probably would not have made it. You would have been in the hospital undergoing surgery to remove 1-3 feet of your small and large intestines."
Thank God for cancellation lists!
She then wrote me a prescription for a very high dose of Prednisone, took me on as a patient and has been by my side ever since.
So two years later, as I sit here listening to The Fray, 35 pounds heavier, in much better spirits and writing my story word by word I realise how truly close to the end I was. It all came down to 19 days. 19 days that could have meant having to spend the rest of my life with an Ileostomy. Or worse.
I have said it again and again, I am sorry for the diagnosis but happy to finally have one.
A word for my discomfort.
A name for my pain.
And although I may complain about LCB and all of his antics he is a part of me.
And I wouldn't change that for the world.
(But would it kill you to let me eat a nice Caesar Salad once in a while?)
;)
It was a Wednesday. I remember it very clearly. Wednesdays were always and have always continued to be my least favourite day of the week. Bad things just tend to happen then. Anyway, I remember it being slightly overcast but still warm. I was still able to wear a t-shirt despite it being the middle of September. Of course I brought a sweater just in case. I like to be prepared and when one is going into the hospital having been gravely ill for three weeks straight and just gone through a three day colonoscopy prep all culminating in losing as much weight as a small child one tends to get chills and hot flashes at the drop of a hat.
My mother dropped me off at the door and then went to park the car. And while sitting on the bench I remember smelling something sweet. I turned around to see a farmer's market benefiting the hospital behind me. They were selling fresh fruits and veggies. This sticks out in my brain because I recall thinking to myself my lack of desire for food, especially these foods and if I would ever eat again. Yes, I felt that sick. And yes. My suspicions were right. In two short hours my world would change.
My Mama came back to retrieve me and I entered the place I had both come to fear and worship. After making another trip to the washroom and ridding my bowels of the final excrement they had managed to hold onto I made my trek up to the second floor. My memory is recalling a joke my mom said about taking the stairs. I just shot her a look. We took the elevator.
Upon reaching the second floor I remember seeing that it was under construction and there were new check in procedures. This made me nervous. I don't do well with new situations and the fact that this was not what I had researched made me even more anxious. So anxious in fact that I got put to the front of the line, bypassing a two hour wait time because of fear of me fainting or my heart exploding from Tachycardia. Apparently a 20 year old isn't supposed to be 105 pounds without being confined to a gurney so she doesn't get hurt. IVs are also particularly difficult to place when you are so dehydrated I have come to realise.
So to catch you up to speed. In the hospital. Tachycardia (fast and irregular heartbeat). 5 IV attempts. 105 pounds. Told to not get up off of the bed for any reason. Rolling into a colonoscopy theatre to meet my Gastroenterologist....
I don't really remember much more after this. I met my wonderful Dr. P. She asked me a lot of questions, none of which I can bring to the front of my mind. But I remember it being cold. I also remember my mom putting my hair into a ponytail. I remember this because I love my mom and after 5 IV attempts your arms are pretty beat up and not really usable. And the anesthesiologist putting the oxygen in my nose. And it being laced with some happy gas. Next was the white fluid. It hurt going into my arm. This I remember most of all. I remember an "ow" escaping my mouth and being turned onto my left side. As I was slipping away the last thing I recall was them telling me to lift my head to put the mouthpiece in as I was also getting an endoscopy....
Then came blankness.
....until 45 minutes later. They only gave me enough drug to last twenty. Let me reiterate. I was very sick. And tired. Oh so tired. After slipping in and out of consciousness for another ten minutes the nurse took charge and demanded I get up. Well I showed her. After five minutes and a fainting episode I was comfortably back in my bed sleeping it off. When I finally came around I had some Gatorade. And then Dr. P. came in and gave me the news the would change my life forever.
"You have Moderate to Severe Crohn's Disease it three spots." She said. And even in my Propofol hazed state this image is burned into my brain and always will be. She drew me a diagram. She showed my where I had a patch of moderately inflamed tissue in my descending colon. She showed me another patch in my transverse colon. She showed me where I was so badly inflamed she could not even get the scope into in my Ileum. And then she told me what I will absolutely never ever EVER forget. "If you had waited until October 4th (my original scope date) you probably would not have made it. You would have been in the hospital undergoing surgery to remove 1-3 feet of your small and large intestines."
Thank God for cancellation lists!
She then wrote me a prescription for a very high dose of Prednisone, took me on as a patient and has been by my side ever since.
So two years later, as I sit here listening to The Fray, 35 pounds heavier, in much better spirits and writing my story word by word I realise how truly close to the end I was. It all came down to 19 days. 19 days that could have meant having to spend the rest of my life with an Ileostomy. Or worse.
I have said it again and again, I am sorry for the diagnosis but happy to finally have one.
A word for my discomfort.
A name for my pain.
And although I may complain about LCB and all of his antics he is a part of me.
And I wouldn't change that for the world.
(But would it kill you to let me eat a nice Caesar Salad once in a while?)
;)
Friday, September 14, 2012
Invisible Illness Week Post 5: But You Don't Look Sick. And Other Relatively Stupid Questions....
GRRRRRRRRRRRRRR!!!! I cannot emphasise how much this bugs me to my core.
When people presume to know what I go through on a daily basis.
-They don't.
When they think maybe I should just do exactly what my doctor says.
-I do.
So then they tell you that you are cured if you did what the doc told you to.
-Um, no. Unfortunately that's not how it works.
Then they tell you that you are hypochondriac.
-Again. I kind of have to be. I have an immune system like a cancer patient undergoing Chemo.
Chemo? They say. So then you have cancer? My uncle had Colon cancer. It was horrible.
-No I don't have cancer. And no I said LIKE chemo. I did not say I am taking chemo.
Or they tell you that their long lost cousin's friend's brother's friend's former roommate had Irritable Bowel Syndrome and all he has to do is stay away from certain foods and he's perfectly fine.
-Once again I have Irritable Bowel Disease. Not Irritable Bowel Syndrome. Disease not Syndrome. IBD not IBS. Two totally separate things. Google it.
So you say that your joints hurt? You have Crohn's Disease, not Arthritis. And what's this about sores in your mouth? Wrong end sweetheart.
-CD is a full body disease. You can get inflammation anywhere from your gums to your bum. And this also includes your joints, muscles, skin, eyes, you name it. If it's got blood supply and is able to accept TNF-a it's fair game.
Then they say, Wow! You sure know a lot about doctor stuff. If you got it from the internet you need to be careful what you read because not everything on there is true.
-Yes. I realised this in Grade 6 when doing research and almost believed Wikipedia's article saying that Hitler invented the printing press. Don't worry. I get all of my information from very reputable sources approved by the people I trust with my life.
Well, why are you even looking up stuff. That's why the doctors get paid so much money. Just let them worry about it.
-Believe me. I would love to not have to be constantly looking up symptoms to make sure I don't need to be at the hospital. Or looking up a new medication to make sure that this rapid heart best isn't going to kill me in my sleep tonight. It's something that I do for my own health and in my mind it's worth every minute.
And my absolute favourite....
But you don't look sick. So how bad can it be really?
-First off. Crohn's Disease is a very internal thing. I can look perfectly normal when you look at me. But if you were to look at my latest set of labs you will see that my c-reactive protein is through the roof this month, my platelets are lower than the ground under your feet and my iron is so high that I'm going to have to go and get a pint drained out of me tomorrow (more on that in another post). And I'm in pain. Sometimes excruciating.
The introvertedness of this disease is what makes people think it's not as bad as it really is. But believe me when I say that behind the smile we exude. Or the laughs we force out. We are in Hell.
How can you help?
-Stop berating us with questions and then belittling our answers. If you have a true question most of us Crohnies are more than willing to answer it in a way you can understand. Just give us time. It's a complicated disease. Or just treat us like any other person. We like to "feel normal". If only for a little while until the next bathroom break.
Or just smile.
You have no idea how much it helps.
When people presume to know what I go through on a daily basis.
-They don't.
When they think maybe I should just do exactly what my doctor says.
-I do.
So then they tell you that you are cured if you did what the doc told you to.
-Um, no. Unfortunately that's not how it works.
Then they tell you that you are hypochondriac.
-Again. I kind of have to be. I have an immune system like a cancer patient undergoing Chemo.
Chemo? They say. So then you have cancer? My uncle had Colon cancer. It was horrible.
-No I don't have cancer. And no I said LIKE chemo. I did not say I am taking chemo.
Or they tell you that their long lost cousin's friend's brother's friend's former roommate had Irritable Bowel Syndrome and all he has to do is stay away from certain foods and he's perfectly fine.
-Once again I have Irritable Bowel Disease. Not Irritable Bowel Syndrome. Disease not Syndrome. IBD not IBS. Two totally separate things. Google it.
So you say that your joints hurt? You have Crohn's Disease, not Arthritis. And what's this about sores in your mouth? Wrong end sweetheart.
-CD is a full body disease. You can get inflammation anywhere from your gums to your bum. And this also includes your joints, muscles, skin, eyes, you name it. If it's got blood supply and is able to accept TNF-a it's fair game.
Then they say, Wow! You sure know a lot about doctor stuff. If you got it from the internet you need to be careful what you read because not everything on there is true.
-Yes. I realised this in Grade 6 when doing research and almost believed Wikipedia's article saying that Hitler invented the printing press. Don't worry. I get all of my information from very reputable sources approved by the people I trust with my life.
Well, why are you even looking up stuff. That's why the doctors get paid so much money. Just let them worry about it.
-Believe me. I would love to not have to be constantly looking up symptoms to make sure I don't need to be at the hospital. Or looking up a new medication to make sure that this rapid heart best isn't going to kill me in my sleep tonight. It's something that I do for my own health and in my mind it's worth every minute.
And my absolute favourite....
But you don't look sick. So how bad can it be really?
-First off. Crohn's Disease is a very internal thing. I can look perfectly normal when you look at me. But if you were to look at my latest set of labs you will see that my c-reactive protein is through the roof this month, my platelets are lower than the ground under your feet and my iron is so high that I'm going to have to go and get a pint drained out of me tomorrow (more on that in another post). And I'm in pain. Sometimes excruciating.
The introvertedness of this disease is what makes people think it's not as bad as it really is. But believe me when I say that behind the smile we exude. Or the laughs we force out. We are in Hell.
How can you help?
-Stop berating us with questions and then belittling our answers. If you have a true question most of us Crohnies are more than willing to answer it in a way you can understand. Just give us time. It's a complicated disease. Or just treat us like any other person. We like to "feel normal". If only for a little while until the next bathroom break.
Or just smile.
You have no idea how much it helps.
Thursday, September 13, 2012
Invisible Illness Week Post 4: What social/emotional implications can "invisible illness" have on someone?
Have you ever been at a party? You're having fun. Eating. Enjoying the company. And then it happens. For whatever reason you get sick. Is it food poisoning from the dodgy looking deviled eggs you ate? Did you drink too much? Someone breathe in your direction? Doesn't matter. You're sick and you can't go home yet. It's the worst feeling ever. And it happens to me ALL of the time.
If I don't know what's in a dish at a potluck, I don't eat it. If I do and it contains something that will upset my stomach, I don't eat it. If there's nothing I can eat, then I don't. Or I suffer the above consequence.
And then there are those times when you have an event or work or something that you can't miss and you feel like absolute crap. It's like the absolute zero of the sick world. And I'm talking if you felt any worse you'd be laying in the hospital on life support. But you still get up. You still press on. You persevere. And no it's not like going to work with the flu.
Another thought. Will there be a toilet at this destination? This is one I had a hard time with this past summer. I went camping at a campground an hour from my home. And I had never been there before. And there was only one bathroom (other than outhouses-ick!) within walking distance. While this wouldn't even phase some people it was a big step for me to remove myself from my comfort zone. And I am proud.
While its one thing to have a bathroom available it's a whole new thing to be visiting it every 10-20 minutes. Especially in a crowded party-like situation. You cannot truly understand the magnitude of embarrassment when you have to excuse yourself to use the facilities AGAIN. And AGAIN. And AGAIN. Embarrassing isn't a strong enough word.
I think this is one of the worst aspects of this disease. The social and emotional embarrassment CD forces you to live with. It's horrible. It's degrading. It downright sucks. But what choice do I have. What choice do any of us Crohnies have? Listen to our doctors. Take our meds. Keep smiling. That's what we do. We laugh. We hope. We hold our heads high. We fight.
And one day we will win.
If I don't know what's in a dish at a potluck, I don't eat it. If I do and it contains something that will upset my stomach, I don't eat it. If there's nothing I can eat, then I don't. Or I suffer the above consequence.
And then there are those times when you have an event or work or something that you can't miss and you feel like absolute crap. It's like the absolute zero of the sick world. And I'm talking if you felt any worse you'd be laying in the hospital on life support. But you still get up. You still press on. You persevere. And no it's not like going to work with the flu.
Another thought. Will there be a toilet at this destination? This is one I had a hard time with this past summer. I went camping at a campground an hour from my home. And I had never been there before. And there was only one bathroom (other than outhouses-ick!) within walking distance. While this wouldn't even phase some people it was a big step for me to remove myself from my comfort zone. And I am proud.
While its one thing to have a bathroom available it's a whole new thing to be visiting it every 10-20 minutes. Especially in a crowded party-like situation. You cannot truly understand the magnitude of embarrassment when you have to excuse yourself to use the facilities AGAIN. And AGAIN. And AGAIN. Embarrassing isn't a strong enough word.
I think this is one of the worst aspects of this disease. The social and emotional embarrassment CD forces you to live with. It's horrible. It's degrading. It downright sucks. But what choice do I have. What choice do any of us Crohnies have? Listen to our doctors. Take our meds. Keep smiling. That's what we do. We laugh. We hope. We hold our heads high. We fight.
And one day we will win.
Wednesday, September 12, 2012
Invisible Illness Week Post 3: A Day in the Life of A Crohnie. Good vs. Bad.
GOOD DAY
7:00am. Wake up. Don't have to go number two? Don't have horrible abdominal pain? How is your back pain? Not too bad. How is your joint pain? Not too bad either. Feel your eyes. Can you open them? Yes? Alright! You can relax. Today is going to be a good day.
7:30am. Get up. What can I wear? I feel good today. I think I'll wear jeans. Dress up a bit.
7:40am. Eat breakfast. What should I have? I feel good today. Maybe venture out of my comfort zone? Nah. I'll have Cheerios. Wouldn't want to throw my day off. Don't forget the Tylenol and Reactine. Oh ya, and OJ. Mmmm OJ.
7:55am. Leave for work. Grab yummy lunch. Grab yummy snacks. Sing in the car.
8:05am. Arrive at work. Greet your kidlets with a smile.
8:35am. Take kids to school. Chat as you go. Tell them to have a super duper day at school.
9:00am. Back to work. Play with babies. Have one on one time.
10:20am. Go outside. Play tag. Play sand toys. Play what time is it Mr. Wolf. Enjoy the youth.
11:45am. Lunch time for the chilluns. Hand out juice. Feed babies food. Clean up juice mess without getting mad.
12:10pm. Nap time. Make beds. Change diapers. Direct big kids. Get everyone to sleep.
12:30pm. Eat my yummy lunch. Enjoy it.
12:45pm. Have fun with the non nappers. Colour. Sing songs. Play games. Go swimming. Sprinkler. An adventure walk. The possibilities are endless. You feel great.
3:10pm. Go and get school kids. Ask about their day and tell them about yours. Help with problems they've had in the day. Feel great.
3:45pm. Get a snack for the kids. Indulge in a bit yourself. Mmmm.
4:00pm. Kids go home. Wave like a maniac as they go.
5:15pm. Go home. Sing with the radio again. Isn't it fun to rock out in the car? It is today. It is a good day.
5:45pm. Eat dinner. But what? The possibilities are endless when you feel this good. Have ice cream for dessert. You've deserve it.
6:45pm. Take a shower. Relax.
7:00pm. Watch TV. Mindless TV. Relax. Regroup for tomorrow.
10:00pm. Bedtime. Reflect on the day. Pray it's as good tomorrow. Hope everyday (or at least most of them) is like today. Rest peacefully.
BAD DAY
7:00am. Wake up. Run to the washroom. Try to get rid of this pain. Do this once, twice, maybe even three times. Regroup. Your stomach is nauseous, your joints are achy and swollen, your eyes are red and inflamed. Today is not going to be a good day.
7:30am. Get dressed in a rush. Throw on some yoga pants. Those will be comfy today.
7:40am. Eat breakfast. Cheerios. Those will be easy on your stomach. Take Tylenol. A lot of Tylenol. And Reactine. Try to fix these eyes.
7:55am. After visiting the loo again rush to work. Who cares what's on the radio. Just get there without throwing up.
8:10am. Say hello. Try to be happy.
8:45am. Take the kids to school. Pretend to listen to their stories. Respond with "good" and "uh huh".
9:00am. Go back to work. Just try to keep the peace.
10:00am. Take them outside. Let them run off their energy. You supervise.
11:45am. Kids eat lunch. You feed babies. Try not to gag on the smell of baby food.
12:15pm. The babies go to bed. You put on a movie for the non nappers. You just don't have the energy to go on an adventure walk today.
12:30pm. Eat your boring lunch. If your stomach can handle it. If not just drink some ginger ale. And take Tylenol. More Tylenol.
3:10pm. Get the kids from school. Try to care about their day. Their childhood problems. Your problems are much worse.
3:45pm. The kids get their snack. None for you today. Your stomach is actually starting to feel better since your rest this afternoon.
4:00pm. Say a quick goodbye to each child and try to clean up the kitchen.
5:15pm. Hallelujah! Its time to go home!
5:45pm. Eat dinner. If you dare. But you definitely won't want dessert. Take more Tylenol.
6:45pm. Take a shower. And relax. Maybe take a bath. Just try to feel better.
7:00pm. Collapse onto the couch. Watch a little TV. Take some T3s.
9:00pm. If you've made it this far congratulations. You've earned the right to go to bed. Early. Maybe you've even skipped the TV part of the evening and just gone right to bed at 7pm. If not. Go now. You're probably tired. Lay in bed and try to sleep. It will be hard. Pray tomorrow is a better day. Hope days like this are few and far between.
Here's to more good days then bad.
:)
7:00am. Wake up. Don't have to go number two? Don't have horrible abdominal pain? How is your back pain? Not too bad. How is your joint pain? Not too bad either. Feel your eyes. Can you open them? Yes? Alright! You can relax. Today is going to be a good day.
7:30am. Get up. What can I wear? I feel good today. I think I'll wear jeans. Dress up a bit.
7:40am. Eat breakfast. What should I have? I feel good today. Maybe venture out of my comfort zone? Nah. I'll have Cheerios. Wouldn't want to throw my day off. Don't forget the Tylenol and Reactine. Oh ya, and OJ. Mmmm OJ.
7:55am. Leave for work. Grab yummy lunch. Grab yummy snacks. Sing in the car.
8:05am. Arrive at work. Greet your kidlets with a smile.
8:35am. Take kids to school. Chat as you go. Tell them to have a super duper day at school.
9:00am. Back to work. Play with babies. Have one on one time.
10:20am. Go outside. Play tag. Play sand toys. Play what time is it Mr. Wolf. Enjoy the youth.
11:45am. Lunch time for the chilluns. Hand out juice. Feed babies food. Clean up juice mess without getting mad.
12:10pm. Nap time. Make beds. Change diapers. Direct big kids. Get everyone to sleep.
12:30pm. Eat my yummy lunch. Enjoy it.
12:45pm. Have fun with the non nappers. Colour. Sing songs. Play games. Go swimming. Sprinkler. An adventure walk. The possibilities are endless. You feel great.
3:10pm. Go and get school kids. Ask about their day and tell them about yours. Help with problems they've had in the day. Feel great.
3:45pm. Get a snack for the kids. Indulge in a bit yourself. Mmmm.
4:00pm. Kids go home. Wave like a maniac as they go.
5:15pm. Go home. Sing with the radio again. Isn't it fun to rock out in the car? It is today. It is a good day.
5:45pm. Eat dinner. But what? The possibilities are endless when you feel this good. Have ice cream for dessert. You've deserve it.
6:45pm. Take a shower. Relax.
7:00pm. Watch TV. Mindless TV. Relax. Regroup for tomorrow.
10:00pm. Bedtime. Reflect on the day. Pray it's as good tomorrow. Hope everyday (or at least most of them) is like today. Rest peacefully.
BAD DAY
7:00am. Wake up. Run to the washroom. Try to get rid of this pain. Do this once, twice, maybe even three times. Regroup. Your stomach is nauseous, your joints are achy and swollen, your eyes are red and inflamed. Today is not going to be a good day.
7:30am. Get dressed in a rush. Throw on some yoga pants. Those will be comfy today.
7:40am. Eat breakfast. Cheerios. Those will be easy on your stomach. Take Tylenol. A lot of Tylenol. And Reactine. Try to fix these eyes.
7:55am. After visiting the loo again rush to work. Who cares what's on the radio. Just get there without throwing up.
8:10am. Say hello. Try to be happy.
8:45am. Take the kids to school. Pretend to listen to their stories. Respond with "good" and "uh huh".
9:00am. Go back to work. Just try to keep the peace.
10:00am. Take them outside. Let them run off their energy. You supervise.
11:45am. Kids eat lunch. You feed babies. Try not to gag on the smell of baby food.
12:15pm. The babies go to bed. You put on a movie for the non nappers. You just don't have the energy to go on an adventure walk today.
12:30pm. Eat your boring lunch. If your stomach can handle it. If not just drink some ginger ale. And take Tylenol. More Tylenol.
3:10pm. Get the kids from school. Try to care about their day. Their childhood problems. Your problems are much worse.
3:45pm. The kids get their snack. None for you today. Your stomach is actually starting to feel better since your rest this afternoon.
4:00pm. Say a quick goodbye to each child and try to clean up the kitchen.
5:15pm. Hallelujah! Its time to go home!
5:45pm. Eat dinner. If you dare. But you definitely won't want dessert. Take more Tylenol.
6:45pm. Take a shower. And relax. Maybe take a bath. Just try to feel better.
7:00pm. Collapse onto the couch. Watch a little TV. Take some T3s.
9:00pm. If you've made it this far congratulations. You've earned the right to go to bed. Early. Maybe you've even skipped the TV part of the evening and just gone right to bed at 7pm. If not. Go now. You're probably tired. Lay in bed and try to sleep. It will be hard. Pray tomorrow is a better day. Hope days like this are few and far between.
Here's to more good days then bad.
:)
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