and I listen. "Another trend that’s making a big splash this spring is floral prints – in bright colors. When you wear a bold print pick a silhouette that flatters your frame. Then add chunky accessories and wedge shoes and you’re good to go." - from Spring Forward wtih Clinton's Fashion Tips
Do you watch The Chew on ABC? You should! Run set your DVR right now, I'll wait for you.
Doo doo doo doo.....doo doo doo....doo doo doo doo DOO doodoodoo....
Done? Good, let's carry on!
I want this dress
But I want it with red or green chunky shoes instead of those yellow ones.
Love these
Two important things going on here - a heavy print dress. SUPER for "hiding" things we don't want noticed, i.e. muffin top, ostomy, that box of Krispy Kreme you are trying to get out of the house. Okay, maybe not that last one. And the SHOES! Heels. Big girl shoes. Pumps. Wedges. Whatever you call them - they help you keep your posture. Someone with good posture portrays confidence!!
So put a cute cardi or a nice fitted blazer/jacket with this for the office and go without for night time! I don't even think this needs jewelry with the cowl neck and that great print - you don't want to overdo it and have too much going on. A nice stack of bangle bracelets would be cute. Me likey these:
Is it a coinky dink that CK's motto is "Wear something cute and don't take any crap"?! Bahahha! Love it! I could modify to "....and don't take A crap" bawahahhahah!
Monday, April 30, 2012
Sunday, April 29, 2012
Time to think
Last week I made a trip north to meet a friend I haven't seen in 3 years for dinner. She was in Dallas visiting family so we decided to meet halfway. It was the first time I have been "alone" for such an extended period of time in I don't know how long. I am constantly surrounded by friends, family, co-workers, etc. and the longest drive I have made since being released is to Ft. Sam Houston for follow up doctor appointments or to go to work - so making a 3 hour journey was something for the record books.
That drive let my mind wander all over the place. How lucky I am to be driving. How blessed I am to have insurance. How glad I am to be seeing a friend and meeting her beautiful daughter for the first time. How amazing it is to be alive. How THANKFUL I am for the people that love me. How things could have been so much worse. How I hope to GOD that my children are NOT affected by this horrific disease. How I want to be an advocate for people with ostomies and Crohn's disease. How I wish there was a Sonic between Round Rock and Belton.
How I put on a super duper strong front on the outside when I am really a hot mess on the inside. How only a handful of people REALLY know how bad it really was there for awhile. How only ONE friend can honestly relate to what it is like to have people judge you for being sick when you don't look sick. How I wish that friend couldn't relate because that would mean that she didn't have Crohn's disease and as much as I love that we can lean on each other, I'd rather go it on my own if it meant she was healthy.
How I wish I would have left earlier so I could have stopped at Ikea. How everyone says I am so strong but they don't know I cry in the shower every morning. How my life is changed FOREVER. How I will always have Crohn's disease no matter what. How lucky I am to still have a job. Thank you Jai - you had no idea how that drive affected me, if it wasn't for you I never would have been able to sort out my brain.
Me, Jai and Gemma :)
That drive let my mind wander all over the place. How lucky I am to be driving. How blessed I am to have insurance. How glad I am to be seeing a friend and meeting her beautiful daughter for the first time. How amazing it is to be alive. How THANKFUL I am for the people that love me. How things could have been so much worse. How I hope to GOD that my children are NOT affected by this horrific disease. How I want to be an advocate for people with ostomies and Crohn's disease. How I wish there was a Sonic between Round Rock and Belton.
How I put on a super duper strong front on the outside when I am really a hot mess on the inside. How only a handful of people REALLY know how bad it really was there for awhile. How only ONE friend can honestly relate to what it is like to have people judge you for being sick when you don't look sick. How I wish that friend couldn't relate because that would mean that she didn't have Crohn's disease and as much as I love that we can lean on each other, I'd rather go it on my own if it meant she was healthy.
How I wish I would have left earlier so I could have stopped at Ikea. How everyone says I am so strong but they don't know I cry in the shower every morning. How my life is changed FOREVER. How I will always have Crohn's disease no matter what. How lucky I am to still have a job. Thank you Jai - you had no idea how that drive affected me, if it wasn't for you I never would have been able to sort out my brain.
Friday, April 27, 2012
Ignorance is ugly
and pathetic as far as I am concerned. It makes me NUTS when people talk about things, make plans about things, decide how rules should affect other people when they have NO IDEA WHAT they are talking about because they haven't done the proper research. The case in point is regarding a little bit that is going around the ostomy community where certains public park/recreation areas are questioning whether to allow people with ostomies (colostomy or ileostomy) to swim in a public or semi-public pool. ARE YOU EFFING KIDDING ME RIGHT NOW?!
Here is a little blip from the page in question:
"E-Mail Bag
Questions like the one discussed below are occurring more and more frequently in public parks and recreation agencies. Let’s make no mistake about it…at RAC we encourage public parks and recreation agencies to not only meet the minimum requirements for access and inclusion, but to exceed the minimum requirements.
Question: We have a person who wants to go swimming and has a colostomy bag. Has anyone ever dealt with this or do you have a policy in your facility about this issue?
RAC Background: We thought long and hard about this. The public parks and recreation agency that is asking the question is in Illinois and this question was asked by Terri Smith of Water Designs in Salt Lake City. Obviously, pool maintenance and patron safety are factors to be weighed. But the ADA makes it clear a pool operator cannot make a decision based on a fear or suspicion, but only on objective fact. With that in mind, here is the answer we sent to Terri.
RAC answer: Here are some thoughts. We suggest this is a good discussion between staff, the participant, and the swimmer’s doctor or physician’s assistant. Simply explain that the agency has never adopted a policy one way or the other and ask to sit down and talk about the issue. Start by asking questions about colostomy and focus on bag and seal integrity. In our opinion that’s really what this is about.
We did some research and some successful tactics used included:
First, limit swim time to 30 to 40 minutes. Water changes the wax seal around the ostomy and it loses its effectiveness. The swimmer must bring a second bag and be able to install it after swimming.
Second, swimmers should wear baggy suits and cover both the ostomy (the opening) and the bag.
Third, on some websites there were concerns about pool water infecting the bather with a colostomy. That’s an issue to discuss with the swimmer.
We did talk with John Rossetti at the Illinois Department of Public Health. He said this issue does arise regularly. He stopped short of saying a person with a colostomy should be banned from a public pool. He tried to draw a parallel between banning a person with bandages from the pool. But I don’t think the medical community sees a colostomy bag and the ostomy itself as a bandage…it is a tight seal.
Terri, I think that after an interview and an assessment of the status of the bag, a pool could, and I emphasize could, ban a swimmer with a colostomy if and only if it feels the bag or the ostomy lack integrity and that a leak is likely. Absent that likelihood (which of course must be supported by history or facts, not a hunch), let the swimmer in. But I’d never, ever recommend a person be banned without at least a face-to-face meeting and consideration of a number of alternatives (like the first two above).
Finally, someone smarter than us about aquatics ought to talk about cheek wash and compare daily cheek wash loads to the typical amount of fecal matter that leaks when the integrity of a colostomy bag or seal is breached. That’s above our pay grade, but we would love to hear the discussion."
Taken from Recreation Accessibility Consultants
My favorite part of this "email" is 'Second, swimmers should wear baggy suits and cover both the ostomy (the opening) and the bag.' Really? Well, then - I'd like people who are considered overweight to wear sargong wraps while laying poolside. Additionally, if you have cellulite please wear shorts. I mean WHO writes something like that? It is SO immature and IGNORANT!
Here are some THOUGHTS Recreation Accessibility Consultants - how about YOU educate yourselves and your membership about ostomies and how they function before you start proposing ways to prevent ostomates from swimming?
Here's Maggie's Vlog on the topic
And Charis' blog where she already has a temporary post up and plans to update it later.
And because this just makes me want to go watch The Legend of Billie Jean I leave you with this "FAIR IS FAIR!"
Here is a little blip from the page in question:
"E-Mail Bag
Questions like the one discussed below are occurring more and more frequently in public parks and recreation agencies. Let’s make no mistake about it…at RAC we encourage public parks and recreation agencies to not only meet the minimum requirements for access and inclusion, but to exceed the minimum requirements.
Question: We have a person who wants to go swimming and has a colostomy bag. Has anyone ever dealt with this or do you have a policy in your facility about this issue?
RAC Background: We thought long and hard about this. The public parks and recreation agency that is asking the question is in Illinois and this question was asked by Terri Smith of Water Designs in Salt Lake City. Obviously, pool maintenance and patron safety are factors to be weighed. But the ADA makes it clear a pool operator cannot make a decision based on a fear or suspicion, but only on objective fact. With that in mind, here is the answer we sent to Terri.
RAC answer: Here are some thoughts. We suggest this is a good discussion between staff, the participant, and the swimmer’s doctor or physician’s assistant. Simply explain that the agency has never adopted a policy one way or the other and ask to sit down and talk about the issue. Start by asking questions about colostomy and focus on bag and seal integrity. In our opinion that’s really what this is about.
We did some research and some successful tactics used included:
First, limit swim time to 30 to 40 minutes. Water changes the wax seal around the ostomy and it loses its effectiveness. The swimmer must bring a second bag and be able to install it after swimming.
Second, swimmers should wear baggy suits and cover both the ostomy (the opening) and the bag.
Third, on some websites there were concerns about pool water infecting the bather with a colostomy. That’s an issue to discuss with the swimmer.
We did talk with John Rossetti at the Illinois Department of Public Health. He said this issue does arise regularly. He stopped short of saying a person with a colostomy should be banned from a public pool. He tried to draw a parallel between banning a person with bandages from the pool. But I don’t think the medical community sees a colostomy bag and the ostomy itself as a bandage…it is a tight seal.
Terri, I think that after an interview and an assessment of the status of the bag, a pool could, and I emphasize could, ban a swimmer with a colostomy if and only if it feels the bag or the ostomy lack integrity and that a leak is likely. Absent that likelihood (which of course must be supported by history or facts, not a hunch), let the swimmer in. But I’d never, ever recommend a person be banned without at least a face-to-face meeting and consideration of a number of alternatives (like the first two above).
Finally, someone smarter than us about aquatics ought to talk about cheek wash and compare daily cheek wash loads to the typical amount of fecal matter that leaks when the integrity of a colostomy bag or seal is breached. That’s above our pay grade, but we would love to hear the discussion."
Taken from Recreation Accessibility Consultants
My favorite part of this "email" is 'Second, swimmers should wear baggy suits and cover both the ostomy (the opening) and the bag.' Really? Well, then - I'd like people who are considered overweight to wear sargong wraps while laying poolside. Additionally, if you have cellulite please wear shorts. I mean WHO writes something like that? It is SO immature and IGNORANT!
Here are some THOUGHTS Recreation Accessibility Consultants - how about YOU educate yourselves and your membership about ostomies and how they function before you start proposing ways to prevent ostomates from swimming?
Here's Maggie's Vlog on the topic
And Charis' blog where she already has a temporary post up and plans to update it later.
And because this just makes me want to go watch The Legend of Billie Jean I leave you with this "FAIR IS FAIR!"
Tuesday, April 24, 2012
For Andi
Monday, April 23, 2012
Don't re-invent the wheel
Before I get to the fashion part of this post - yes, there will be fashioned discussed on a fashion blog...novel idea isn't it? I told y'all I can get on a tangent and you may never see the bright lights of a neon off the shoulder cut up sweatshirt ala Flashdance. So, the before part is, drumrollllllllllll please - I was nominated as a Chronic Disease Diva!! How awesome is that? I was SO honored and floored that someone did that for me - many thanks to my gal pal Randi for thinking enough of me to nominate me.
I know, you are wondering what the heck is a chronic disease diva right? Well, according to Sarah over at A Girl with Guts it is "A CDD (chronic disease diva or chronic disease devo if you’re a male) does not involve glitter or sequins…though that would make it even more appealing. A CDD is someone who owns her disease. Who can manage a life of illness with self-confidence. She knows exactly who she is. The difference between a regular diva and a CDD is owning your disease. A chronic disease diva is proud of herself even with an illness. She usually is a huge advocate for her disease and isn’t afraid to walk the walk and talk the talk. Every day she is a role model of strength and courage in the sick community. Have you ever seen one of these fabulous ladies and said “I want to be like that?!” That’s when you know you’ve spotted a CDD." Floored, totally floored.
Anywhoosie - fashion, fashion, fashion. Not so much something fashiony I have to share as it is functional. Behold the wonders of the Victoria's Secret bandeau top used as a "belly band"
Please ignore the fact that my pants look like jodhopurs in this picture, I assure you I spread out the "gatheredness" so as to not look like a horse jockey.
Here's what it looks like under my sweater:
So here you can see the top of my scar, then the top of my pouch sticking out and the "belly band" over the waistband of my pants. Now here is the genius tip - if you are still swollen from your surgery or sore or WHATEVER in your abdominal region, pull the old pregnancy trick and use a rubberband to loop your pants together instead of buttoning them. Put one end of the rubber band around the button then feed the other end through the button hole and loop it back over to go around the button. Wallah! Use a longer or shorter rubber band to get the effect you want. Then pull down a "belly band" over it and no one will ever know your pants are undone hahah!
As far as the bandeau top goes, I ordered them when they were on sale $10/ea. When they arrived I love them so much I went back online to order more fully intending to pay full price and they were GONE!! NOT THERE ANYMORE!! Wahhhhh! Hmphf. One edge is tighter than the other so I actually turn it upsidedown and then put it on over my head, situate it and get on my way. Last weekend I actually ended up wearing it on the inside of my jeans because there was plenty of room for me to button but they were super low cut and liked to ride down a bit - so, "belly band" covered my entire pouch aside from the filter part that I let stick out :) Helped the jeans fit better because there was extra fabric taking up space, made me more comfortable so I wasn't tugging at my jeans all night AND I didn't have to wear a belt which definitely would not have been fun for me.
Next time I wear it like that I'll get pics to share.
Anywhoosie - fashion, fashion, fashion. Not so much something fashiony I have to share as it is functional. Behold the wonders of the Victoria's Secret bandeau top used as a "belly band"
Here's what it looks like under my sweater:
So here you can see the top of my scar, then the top of my pouch sticking out and the "belly band" over the waistband of my pants. Now here is the genius tip - if you are still swollen from your surgery or sore or WHATEVER in your abdominal region, pull the old pregnancy trick and use a rubberband to loop your pants together instead of buttoning them. Put one end of the rubber band around the button then feed the other end through the button hole and loop it back over to go around the button. Wallah! Use a longer or shorter rubber band to get the effect you want. Then pull down a "belly band" over it and no one will ever know your pants are undone hahah!
As far as the bandeau top goes, I ordered them when they were on sale $10/ea. When they arrived I love them so much I went back online to order more fully intending to pay full price and they were GONE!! NOT THERE ANYMORE!! Wahhhhh! Hmphf. One edge is tighter than the other so I actually turn it upsidedown and then put it on over my head, situate it and get on my way. Last weekend I actually ended up wearing it on the inside of my jeans because there was plenty of room for me to button but they were super low cut and liked to ride down a bit - so, "belly band" covered my entire pouch aside from the filter part that I let stick out :) Helped the jeans fit better because there was extra fabric taking up space, made me more comfortable so I wasn't tugging at my jeans all night AND I didn't have to wear a belt which definitely would not have been fun for me.
Next time I wear it like that I'll get pics to share.
Saturday, April 21, 2012
Post-it notes and public toilets
One of my biggest pet peeves is going into the bathroom and coming face to face with someone else's business - whether at home or out and about. So, I totally GET the automatic flushing toilets that so many places have installed - but for the LOVE of GOD, they drive me NUTS as an ostomate! Are they set on a timer or overly sensitive to motion? Sheesh, it's like raaching for the toilet paper even sets the damn thing off!! I mean, I have a little extra business to take care of now and the last thing it want it pee water splashing up on my cheeks because of the automatic toilets.
In an effort to find a solution to my problem instead of just bitching about it, I will now carry post-it notes on my person at all times so that I can apply said note over the little sensor trigger and hopefully STOP THE INSANITY!
This has been a public service announcement from the girl who doesn't want pee water splashed on her cheeks.
Monday, April 16, 2012
First day of work, first day of work
say it in your best Nemo voice - come on! So, it really was my 3rd 1st day of work. Kind of like celebrating the 9th anniversary of your 29th birthday if ya get my drift? I started working way back in December of 2011 (last year!). Worked for 6 days and landed in the hospital at which time I scheduled surgery for 5 days later and saw no reason to return to said job for 5 days to learn things I would inevitably forget should they actually decide to keep me on. After my LENGTHY hospital stay I finally returned to work in March and worked 9 hours in 4 days before my doctor ordered me on IV antibiotics and 3 more weeks off work. And yes, I still had a j.o.b.! So, today, I went back after my latest antibiotic vacation and worked a full day - well, full day for me which is 9-2 and it was GREAT!! Didn't even think about Stella, no pain, up and down from my desk wearing my gigantic Very Volatile platforms. It was fantastic.
So, what did I wear you ask? I wore a pre-ostomy outfit - hell's yeah! The skirt is a smidgy more snug than I would like, but if we are being honest it was way too big in the waist before so it probably actually fits correctly now. My lower abdomen is still swollen and I have a big dippity do right down the middle of my belly :( It is mostly healed over, a small scab remains dead center but should be gone in the next week - they say it will take close to a year for me to "even out". That part kinda makes me sad because my belly was always my favorite part - I had an hourglass shape so my waist was small and my stomach was pretty flat by all measures and now I have this newly formed mountain region on my stomach - bump, dip, bump with a hat (stoma) LOL! It will all come together eventually.
Anywho - on to the fashion part of this blog! What I wore to work today:
Let me say a couple things about this photo - yes, I recently got my hair did :) I am standing on a stepstool, you can see my unmade bed in the background (my mother noticed that in a picture I posted on Facebook that my bed was made so I had to point that out!) and I have a pink iPhone. In exchange for looking at the unmade bed I spared you all from looking at my bras which I removed from that towel bar behind me, but left the wound care spray - go me. I did attempt to stand on the counter but that caused my head to be cut off, which may have not been such a bad idea now that I think about it. NOTE TO SELF - purchase full length mirror to take photos, also get one of those remote picture taker thingies for the iPhone so I don't have to dislocate my shoulder when taking pictures.
So, can you see my ostomy? Would you "know" if you didn't "know"? A great way to camouflage the area is with pattern, today I chose stripes! Also, the top I have on has a band at the bottom - it isn't stretchy but the way that it fits causes the bottom hem to lay just about 1.5" past the waistband of the skirt. A little overlap is good for those days when you are reaching off shelves to retrieve reports and notebooks! The top is sleeveless and if I was going to a picnic or something I would have left it at home, but I was going to work so I needed to cover up. Not to mention I have the remnants of a PICC line on my upper left arm that isn't all that cute to look at, so it is covered as well.
Something else you can't see in this pic are the hella awesome shoes I have on from Very Volatile. I found them in the clearance room at Von Maur forever and day ago and I love them. They are platform wedges and they rock - making my legs look longer and me look taller. Plus, fabulous shoes draw people's eye DOWN to your feet so if you aren't completely comfortable with your ostomy yet it doesn't become the focal point.
There you have it! Cardi-shrug from Old Navy $15, brown top from Talbot's and I have no idea how much becuse I got it eons ago - same for the skirt, it is also Talbot's. I like Talbot's :)
So, what did I wear you ask? I wore a pre-ostomy outfit - hell's yeah! The skirt is a smidgy more snug than I would like, but if we are being honest it was way too big in the waist before so it probably actually fits correctly now. My lower abdomen is still swollen and I have a big dippity do right down the middle of my belly :( It is mostly healed over, a small scab remains dead center but should be gone in the next week - they say it will take close to a year for me to "even out". That part kinda makes me sad because my belly was always my favorite part - I had an hourglass shape so my waist was small and my stomach was pretty flat by all measures and now I have this newly formed mountain region on my stomach - bump, dip, bump with a hat (stoma) LOL! It will all come together eventually.
Anywho - on to the fashion part of this blog! What I wore to work today:
Let me say a couple things about this photo - yes, I recently got my hair did :) I am standing on a stepstool, you can see my unmade bed in the background (my mother noticed that in a picture I posted on Facebook that my bed was made so I had to point that out!) and I have a pink iPhone. In exchange for looking at the unmade bed I spared you all from looking at my bras which I removed from that towel bar behind me, but left the wound care spray - go me. I did attempt to stand on the counter but that caused my head to be cut off, which may have not been such a bad idea now that I think about it. NOTE TO SELF - purchase full length mirror to take photos, also get one of those remote picture taker thingies for the iPhone so I don't have to dislocate my shoulder when taking pictures.
So, can you see my ostomy? Would you "know" if you didn't "know"? A great way to camouflage the area is with pattern, today I chose stripes! Also, the top I have on has a band at the bottom - it isn't stretchy but the way that it fits causes the bottom hem to lay just about 1.5" past the waistband of the skirt. A little overlap is good for those days when you are reaching off shelves to retrieve reports and notebooks! The top is sleeveless and if I was going to a picnic or something I would have left it at home, but I was going to work so I needed to cover up. Not to mention I have the remnants of a PICC line on my upper left arm that isn't all that cute to look at, so it is covered as well.
Something else you can't see in this pic are the hella awesome shoes I have on from Very Volatile. I found them in the clearance room at Von Maur forever and day ago and I love them. They are platform wedges and they rock - making my legs look longer and me look taller. Plus, fabulous shoes draw people's eye DOWN to your feet so if you aren't completely comfortable with your ostomy yet it doesn't become the focal point.
There you have it! Cardi-shrug from Old Navy $15, brown top from Talbot's and I have no idea how much becuse I got it eons ago - same for the skirt, it is also Talbot's. I like Talbot's :)
Friday, April 13, 2012
Not fashion related
but it's my blog and I can do what I want.
Today I chaperoned a field trip with my youngest child's first grade class. Normally I would loathe every moment of trying to wrangle someone else's hellion child in 95 degree weather with the use of Xanax - but this trip was different.
First, I didn't need the Xanax. I wasn't stressed about how many bathrooms were on the grounds, how would I go to the bathroom with a group of boys in my charge, would I be able to make the drive to the location without having to stop to go to the bathroom? I didn't stress about any of those things thanks to my awesome surgeon Dr. Potty Mouth* and my pretty new plumbing accessory Stella. Yay for no colon!
Second, we went to Morgan's Wonderland. "Morgan’s Wonderland is the first park of its kind in the world specifically designed for the recreation and enjoyment of individuals with special needs." To say that it was a day of reflection would be an understatement. I found myself thanking God for my healthy, wonderful, able-bodied children (even though they sometimes make me want to pull my hair out!), remembering how BLESSED I am to even BE on the fieldtrip and how LUCKY I am to have MY LIFE BACK. I held back tears so many times; tears of hurt for the children that were on ventilators/in wheelchairs/with walkers - tears of JOY that nothing was holding them back, they were there having a great time with the people that love them! - and tears of compassion for the parents/caregivers that accompanied them, how amazing and strong they all are.
And then, the tears of PRIDE - pride in my baby, my little Magooey. So compassionate, so loving and so caring. Never was there mention of anyone being "different" from him, never a raise in his voice or tone when another child "got in his way" - but the best was the celebration in his heart and his eyes as we watched a young man in a wheelchair, on a ventilator and hooked up to monitors be placed in the back of a "Jeep" while his parents sat in the front and they took their trip around the "OFF ROAD" course - "MOM, how AWESOME IS THAT? He gets to go on the ride too!!" As we passed that family on the track, he reached across me, stuck his arm in the air and waved to them "Have a great ride!"
And a great ride it was, for all of us.
**name changed to protect her privacy - y'all can't have her she's MY SURGEON!! :)
Today I chaperoned a field trip with my youngest child's first grade class. Normally I would loathe every moment of trying to wrangle someone else's hellion child in 95 degree weather with the use of Xanax - but this trip was different.
First, I didn't need the Xanax. I wasn't stressed about how many bathrooms were on the grounds, how would I go to the bathroom with a group of boys in my charge, would I be able to make the drive to the location without having to stop to go to the bathroom? I didn't stress about any of those things thanks to my awesome surgeon Dr. Potty Mouth* and my pretty new plumbing accessory Stella. Yay for no colon!
Second, we went to Morgan's Wonderland. "Morgan’s Wonderland is the first park of its kind in the world specifically designed for the recreation and enjoyment of individuals with special needs." To say that it was a day of reflection would be an understatement. I found myself thanking God for my healthy, wonderful, able-bodied children (even though they sometimes make me want to pull my hair out!), remembering how BLESSED I am to even BE on the fieldtrip and how LUCKY I am to have MY LIFE BACK. I held back tears so many times; tears of hurt for the children that were on ventilators/in wheelchairs/with walkers - tears of JOY that nothing was holding them back, they were there having a great time with the people that love them! - and tears of compassion for the parents/caregivers that accompanied them, how amazing and strong they all are.
And then, the tears of PRIDE - pride in my baby, my little Magooey. So compassionate, so loving and so caring. Never was there mention of anyone being "different" from him, never a raise in his voice or tone when another child "got in his way" - but the best was the celebration in his heart and his eyes as we watched a young man in a wheelchair, on a ventilator and hooked up to monitors be placed in the back of a "Jeep" while his parents sat in the front and they took their trip around the "OFF ROAD" course - "MOM, how AWESOME IS THAT? He gets to go on the ride too!!" As we passed that family on the track, he reached across me, stuck his arm in the air and waved to them "Have a great ride!"
And a great ride it was, for all of us.
**name changed to protect her privacy - y'all can't have her she's MY SURGEON!! :)
Wednesday, April 11, 2012
I have Crohn's disease
but it doesn't have me.
In August of 2003 I was diagnosed with Crohn's disease. Crohn's disease is a form of inflammatory bowel disease (IBD) that usually affects the intestines but can occur anywhere from the mouth through the end of the rectum (anus). Sounds fantastic doesn't it? The exact cause of Crohn's disease is unknown *which is why you should support CCFA Take Steps Be Heard! but your genes, environmental factors and the body over-reacting to normal bacteria in the intestines. As an autoimmune disorder, the body's immune system mistakenly attacks and destroys healthy body tissue. It just keeps getting better huh? Crohn's can occur at any age but is most likely to rear it's head between the ages of 15 and 35. Some people are more likely to have Crohn's disease including those with a family history, the Jewish population and smokers. I'll let you guess which of those categories I fall in to.
The delightful symptoms of Crohn's disease can be all of or a combination of crampy abdominal pain, fatigue, fever, diarrhea, constipation, loss of appetite, pain with passing stool, fistulas, mouth ulcers, bloody stools, rectal bleeding and swollen gums. Some people can have very mild and infrequent symptoms while others can have them all at the same time and VERY severe. From reading the above you can imagine that you probably wouldn't recognize someone with Crohn's diasease walking down the street. Heck, you might not even know one of your friends has Crohn's disease - except for the weight loss part which a lot of Crohn's patients would pass off as "dieting" to friends instead of going into the details of their romance with the toilet. Bowel movements aren't an appropriate topic of conversation for most people - unless you are a GI doc, a colo-rectal surgeon, a new parent or an IBD patient. How many times have I heard "but you don't look sick"? More than I can count.
As an IBD patient you get to undergo all kinds of super invasive tests - as if I didn't lose enough modesty having 2 children, it is definitely gone from having Crohn's disease. Colonoscopy, endoscopy, CT with IV and oral contrast, MRI, sigmoidoscopy, upper GI series, barium enemas, etc.
I don't want to bore you with each flare-up of my disease and all my numerous hospital visits because honestly, I don't think I could remember them all without my voluminous medical record. I'll just give you my last stop. In December 2011 I had a total proctocolectomy with end ileostomy - from my colon to my rectum was removed and my hiney was sewn shut. Funny sidenote, the night before surgery I announced I was wiping my butt for the last time....only to arrive at the hospital the next morning to 2 fleet enemas before surgery. So my last butt wiping was actually at the hospital - oh well! Anywho, an ileostomy is a surgical opening constructed by bringing the end of the small intestine (ileum) through the abdominal wall and onto the skin. Intestinal waste passes through the ileostomy into a pouch that I wear on my abdomen and I empty whenever I feel the need, it starts to get full, I am leaving the house, before bed, etc. If I am home all day sometimes I will only empty it twice - depending on what I eat! Mine is located on the right side of my abdomen just to the right of my belly button (or where my belly button used to be!).
So, why did I start this blog? Well - because I want to share that you can still be fashionable with your ileostomy! For the first several weeks after surgery I lived in pajama pants, yoga pants, basically anything with a loose elastic waistband. I was still trying to figure out how this stoma (the part of the small intestine that sticks out of my skin) was going to work and fit into my life. Overtime I eventually wore my first pair of jeans! I combed the internet looking for ostomy apparel - I found LOTS of websites Ostomy Secrets, Vanilla Blush, White Rose Collection Fun Ostomy Belts to name a few, but I was hesitant to spend big bucks on something I wasn't sure was going to work for me. Plus, most of what is out there is focused on undergarments, lingerie and similar things. I wanted to wear what I already had in my closet but I knew I was probably going to have to wear it in a different way - and so Detoured Fashion was born.
So, I look forward to sharing what I find with you! The fashion I share will work for ostomates and non-ostomates alike so be sure to check in and see what I have found and PLEASE PLEASE PLEASE, leave ideas, suggestions and/or questions in the comments!!! In addition to helping my fellow "osto-mates" (a tip of the hat to my new Aussie friend) I want to help erase the stigma or taboo of the ostomy. I want to make sure the right information is out there for people - no question is too personal and if it is I will let you know!
In August of 2003 I was diagnosed with Crohn's disease. Crohn's disease is a form of inflammatory bowel disease (IBD) that usually affects the intestines but can occur anywhere from the mouth through the end of the rectum (anus). Sounds fantastic doesn't it? The exact cause of Crohn's disease is unknown *which is why you should support CCFA Take Steps Be Heard! but your genes, environmental factors and the body over-reacting to normal bacteria in the intestines. As an autoimmune disorder, the body's immune system mistakenly attacks and destroys healthy body tissue. It just keeps getting better huh? Crohn's can occur at any age but is most likely to rear it's head between the ages of 15 and 35. Some people are more likely to have Crohn's disease including those with a family history, the Jewish population and smokers. I'll let you guess which of those categories I fall in to.
The delightful symptoms of Crohn's disease can be all of or a combination of crampy abdominal pain, fatigue, fever, diarrhea, constipation, loss of appetite, pain with passing stool, fistulas, mouth ulcers, bloody stools, rectal bleeding and swollen gums. Some people can have very mild and infrequent symptoms while others can have them all at the same time and VERY severe. From reading the above you can imagine that you probably wouldn't recognize someone with Crohn's diasease walking down the street. Heck, you might not even know one of your friends has Crohn's disease - except for the weight loss part which a lot of Crohn's patients would pass off as "dieting" to friends instead of going into the details of their romance with the toilet. Bowel movements aren't an appropriate topic of conversation for most people - unless you are a GI doc, a colo-rectal surgeon, a new parent or an IBD patient. How many times have I heard "but you don't look sick"? More than I can count.
As an IBD patient you get to undergo all kinds of super invasive tests - as if I didn't lose enough modesty having 2 children, it is definitely gone from having Crohn's disease. Colonoscopy, endoscopy, CT with IV and oral contrast, MRI, sigmoidoscopy, upper GI series, barium enemas, etc.
I don't want to bore you with each flare-up of my disease and all my numerous hospital visits because honestly, I don't think I could remember them all without my voluminous medical record. I'll just give you my last stop. In December 2011 I had a total proctocolectomy with end ileostomy - from my colon to my rectum was removed and my hiney was sewn shut. Funny sidenote, the night before surgery I announced I was wiping my butt for the last time....only to arrive at the hospital the next morning to 2 fleet enemas before surgery. So my last butt wiping was actually at the hospital - oh well! Anywho, an ileostomy is a surgical opening constructed by bringing the end of the small intestine (ileum) through the abdominal wall and onto the skin. Intestinal waste passes through the ileostomy into a pouch that I wear on my abdomen and I empty whenever I feel the need, it starts to get full, I am leaving the house, before bed, etc. If I am home all day sometimes I will only empty it twice - depending on what I eat! Mine is located on the right side of my abdomen just to the right of my belly button (or where my belly button used to be!).
So, why did I start this blog? Well - because I want to share that you can still be fashionable with your ileostomy! For the first several weeks after surgery I lived in pajama pants, yoga pants, basically anything with a loose elastic waistband. I was still trying to figure out how this stoma (the part of the small intestine that sticks out of my skin) was going to work and fit into my life. Overtime I eventually wore my first pair of jeans! I combed the internet looking for ostomy apparel - I found LOTS of websites Ostomy Secrets, Vanilla Blush, White Rose Collection Fun Ostomy Belts to name a few, but I was hesitant to spend big bucks on something I wasn't sure was going to work for me. Plus, most of what is out there is focused on undergarments, lingerie and similar things. I wanted to wear what I already had in my closet but I knew I was probably going to have to wear it in a different way - and so Detoured Fashion was born.
So, I look forward to sharing what I find with you! The fashion I share will work for ostomates and non-ostomates alike so be sure to check in and see what I have found and PLEASE PLEASE PLEASE, leave ideas, suggestions and/or questions in the comments!!! In addition to helping my fellow "osto-mates" (a tip of the hat to my new Aussie friend) I want to help erase the stigma or taboo of the ostomy. I want to make sure the right information is out there for people - no question is too personal and if it is I will let you know!
Tuesday, April 10, 2012
Under construction
I am so excited to start this new blog adventure! Please stay tuned and bear with me as I tweak and fine tune things just the way I like them. Next up - an intro for those who don't know me or my journey with Crohn's disease. Please share this link with friends and family!!
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