Opening door #2 today to find....
Baby wipes !!
(only IBD'ers will understand)
Check back each day until Dec 24 !
Sunday, December 2, 2018
Saturday, December 1, 2018
Crohnie Advent Calendar : Day 1
December 1st marks the first day of the Crohnie calendar, so let's see what's behind the first door this year....
Costco size bag of toilet paper !!
Check back each day until Dec 24 !
Costco size bag of toilet paper !!
Check back each day until Dec 24 !
Wednesday, November 28, 2018
"But, You Don't Look Sick"
Having a chronic illness is hard.
Not only because of the health issues that are associated with your illness, but trying to "prove" to others that you are actually sick. Crohn's disease is an invisible illness, meaning you cannot visibly see that there is anything wrong. I relate it to a duck on a pond. On the surface you see a duck, calm as can be, but beneath the water his webbed feet are moving around at a frantic pace.
In my case, I look "normal" on the outside, but some days I am in pain, or fatigued, or dehydrated, etc. all the while putting on a brave face so others don't constantly ask, "are you okay?".
I think those that suffer from IBD (inflammatory bowel disease) are the BEST actors in the world, we spend all day long pretending we look WELL.
When we're home, out of the site of friends, co workers and even family, that's when we LOOK our disease, the acting is over.
So, this is me feeling pretty good...
And this is me in the middle of having a flare...
There can be any number of things going on when you have an invisible illness, you never know just by looking at someone. The old saying, don't judge a book by it's cover, absolutely applies to IBD people or anyone suffering with an invisible illness. Only they know how they're doing, so think twice before saying...
"...but...you don't LOOK sick"
Not only because of the health issues that are associated with your illness, but trying to "prove" to others that you are actually sick. Crohn's disease is an invisible illness, meaning you cannot visibly see that there is anything wrong. I relate it to a duck on a pond. On the surface you see a duck, calm as can be, but beneath the water his webbed feet are moving around at a frantic pace.
In my case, I look "normal" on the outside, but some days I am in pain, or fatigued, or dehydrated, etc. all the while putting on a brave face so others don't constantly ask, "are you okay?".
I think those that suffer from IBD (inflammatory bowel disease) are the BEST actors in the world, we spend all day long pretending we look WELL.
When we're home, out of the site of friends, co workers and even family, that's when we LOOK our disease, the acting is over.
So, this is me feeling pretty good...
And this is me in the middle of having a flare...
There can be any number of things going on when you have an invisible illness, you never know just by looking at someone. The old saying, don't judge a book by it's cover, absolutely applies to IBD people or anyone suffering with an invisible illness. Only they know how they're doing, so think twice before saying...
"...but...you don't LOOK sick"
Monday, November 12, 2018
You Might Be A Crohnie
If your son's nickname for you is "the ass of death"
... you might be a Crohnie
... you might be a Crohnie
Friday, November 9, 2018
Remicade : Day 2299
I have had the same IV nurse for almost all of my 2299 days, but sadly she has since retired and my first infusion with a new nurse.... she misses the vein 😒
I said I wanted to heat up my hand, but she insisted she could get the vein....needless to say, she let me heat it up a good 10-15 minutes before trying again.
After I unwrapped my hand, she said, "Oh, that's better!"
Really.......
I said I wanted to heat up my hand, but she insisted she could get the vein....needless to say, she let me heat it up a good 10-15 minutes before trying again.
After I unwrapped my hand, she said, "Oh, that's better!"
Really.......
Thursday, October 25, 2018
My Sit Down With Pamela Jessen
For the month of October, Pamela Jessen, a chronic illness blogger featured HERE is featuring interviews with a wide variety of people with chronic illnesses. It was a pleasure to be interviewed by here and to be included with such great people, including fellow Crohn's blogger Jenni from Jenni's Guts I am always honored and humbled to be included with the many people bringing awareness to their predicament
Thanks to Pamela for keeping awareness alive for all kinds of chronic illness sufferers.
Thanks to Pamela for keeping awareness alive for all kinds of chronic illness sufferers.
Tuesday, October 23, 2018
Monday, October 15, 2018
You Might Be A Crohnie...
*Repost*
If you can actually spell G-A-S-T-R-O-E-N-T-E-R-O-L-O-G-I-S-T.....
you might be a Crohnie
.
If you can actually spell G-A-S-T-R-O-E-N-T-E-R-O-L-O-G-I-S-T.....
you might be a Crohnie
.
Friday, October 5, 2018
Remicade : Day 2263
Bitter sweet infusion a week ago Wednesday. The infusion nurse that I've had since Day 1 told me that she is retiring and I'll have someone new at my next infusion.
My infusion nurse, Margaret, you have to understand, would call me hours before my scheduled appointment to see if I wanted to come in early so I can get home in time for my kids. My infusions are only an hour, but with weighing in, paperwork, prepping the "juice", etc. it was more like an hour and a half, so she would call when she got there and ask if I wanted to come early. I was always waiting at home doing nothing anyway, so I took her up on her offer every time.
She only worked the one day a week, my day, but she had been a nurse all her life and was time to do other things. Good for her.
She would use the same vein on my left hand, affectionately called "Margaret's vein". I'm thinking I'm not going to get the same kind of treatment, but you never know, I might get someone just as nice.
My infusion nurse, Margaret, you have to understand, would call me hours before my scheduled appointment to see if I wanted to come in early so I can get home in time for my kids. My infusions are only an hour, but with weighing in, paperwork, prepping the "juice", etc. it was more like an hour and a half, so she would call when she got there and ask if I wanted to come early. I was always waiting at home doing nothing anyway, so I took her up on her offer every time.
She only worked the one day a week, my day, but she had been a nurse all her life and was time to do other things. Good for her.
She would use the same vein on my left hand, affectionately called "Margaret's vein". I'm thinking I'm not going to get the same kind of treatment, but you never know, I might get someone just as nice.
Saturday, September 29, 2018
Rigors
This past week has been long and tough. I had been feeling not too bad prior but then last Monday night/Tuesday morning, things just went the opposite direction quickly.
I wanted to show how, with Crohn's, when I say one minute you may be fine and the next you could be in hospital.
Monday was the same as any other, nothing out of the ordinary, other than starting to feel worn down because my Remicade (mouse juice) was coming up on Wednesday. That was until the middle of Monday night. Around 2am I got up to go to the bathroom, again not unusual, and got back into bed and under the covers as I started to feel chilly. I wish I was just feeling cold.
I started to get the shakes and shivers, as one does when you get chilly, but after a good few minutes I knew it was the start of rigors. I don't get them that often but when I first got them, I had no idea what was happening and it scared the hell out of me. The first couple of times, I called the ambulance because it was so severe, my jaw was clenched to the point of becoming locked. The doctors at the hospital had no idea what was happening to me.
For those that don't know what rigors is, simply, its uncontrolled shaking and tensing of all your muscles. I try to calm them down by deep breathing, but it only helps for a few seconds. I even would cover myself with every single blanket in my house. Once I had my son take everything out of the dryer and dump it on me...no help.
It's the most helpless feeling. I want to stop, but can't.
This past attack lasted about 2 hours and, like always, after I threw up, the shaking started to slow and then eventually...just...stop. Then the aches, pains and headaches start. I also run a slight temperature and high heart rate. As you can imagine, after two hours of non stop shaking and clenching, one would ache all over. I feel it in my joints, especially my knees, and all my muscles. My head just pounds for hours and sometimes days. What lasts for hours, takes days to recover.
I was worried this time because my infusion was the next day and I was still running a slight temperature of 37.8C, but my IV nurse said it was still okay. She was more worried about my 115 heart rate. But by the time the infusion was done, it was down to 102, still high, but on its way down. Goes to show how long it takes to recover from a rigors attack.
For me, I no longer go to hospital and ride it out at home because I know that after a few hours, I'm going to throw up and it'll be over. Why it happens? Beats me. I know that Crohn's is a factor and I have an on going abscess, which also is a factor. I figure its another way my body of fighting off some sort of infection. This is my experience with rigors, yours might be different. I've had probably around 10 -20 attacks in 30 years. Always check with your doctor on what you should do.
Hey, if after all these years my body is still fighting... I'll take it.
I wanted to show how, with Crohn's, when I say one minute you may be fine and the next you could be in hospital.
Monday was the same as any other, nothing out of the ordinary, other than starting to feel worn down because my Remicade (mouse juice) was coming up on Wednesday. That was until the middle of Monday night. Around 2am I got up to go to the bathroom, again not unusual, and got back into bed and under the covers as I started to feel chilly. I wish I was just feeling cold.
I started to get the shakes and shivers, as one does when you get chilly, but after a good few minutes I knew it was the start of rigors. I don't get them that often but when I first got them, I had no idea what was happening and it scared the hell out of me. The first couple of times, I called the ambulance because it was so severe, my jaw was clenched to the point of becoming locked. The doctors at the hospital had no idea what was happening to me.
For those that don't know what rigors is, simply, its uncontrolled shaking and tensing of all your muscles. I try to calm them down by deep breathing, but it only helps for a few seconds. I even would cover myself with every single blanket in my house. Once I had my son take everything out of the dryer and dump it on me...no help.
It's the most helpless feeling. I want to stop, but can't.
This past attack lasted about 2 hours and, like always, after I threw up, the shaking started to slow and then eventually...just...stop. Then the aches, pains and headaches start. I also run a slight temperature and high heart rate. As you can imagine, after two hours of non stop shaking and clenching, one would ache all over. I feel it in my joints, especially my knees, and all my muscles. My head just pounds for hours and sometimes days. What lasts for hours, takes days to recover.
I was worried this time because my infusion was the next day and I was still running a slight temperature of 37.8C, but my IV nurse said it was still okay. She was more worried about my 115 heart rate. But by the time the infusion was done, it was down to 102, still high, but on its way down. Goes to show how long it takes to recover from a rigors attack.
For me, I no longer go to hospital and ride it out at home because I know that after a few hours, I'm going to throw up and it'll be over. Why it happens? Beats me. I know that Crohn's is a factor and I have an on going abscess, which also is a factor. I figure its another way my body of fighting off some sort of infection. This is my experience with rigors, yours might be different. I've had probably around 10 -20 attacks in 30 years. Always check with your doctor on what you should do.
Hey, if after all these years my body is still fighting... I'll take it.
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