It's like this and like that and like this and ah...

So a few things. This is probably NOT going to be a shiny, happy post. Just warning. I'm a BITCH. First things first, yesterday was World IBD day and I posted and retweeted and what not which is fine bc all the other days of the year I do that too so it's cool. I was on a few sites and groups yesterday getting all bent out of shape. EVERY SINGLE THING was "bring awareness TODAY on World IBD day". "Wear your purple TODAY to bring awareness"... blah blah blah. Seriously. These are the same people who hide their illness, are ashamed of their scars, embarrassed by their ostomies and NEVER talk about their illness outside their locked down Facebook group. Hey, we all have our things. Not all of us are as comfortable with things as others are. I get it. BUT DON"T BLAST THE SHIT OUT OF THE INTERWEBS ONE DAY A YEAR IN THE NAME OF IBD AWARENESS. Because you blasting Twitter is NOT bringing awareness. The average person is not following #WorldIBDday. Bringing awareness to our illness is a DAILY job. You want people to "get" what IBD is about so bad? Do you really? Then open your mouth the OTHER 364 days a year in REAL life. I will guarantee I have enlightened more people this year NOT wearing purple and just by peppering my conversation with my struggle and NEVER hiding what I am, than you do wearing your purple that no one looks twice at. Wearing an ostomy bag to the beach and not hiding it will spark more conversation and offer more chances to inform and educate than posting meme's all damn day long on World IBD day. Don't get me wrong, I love that we have a day. But the point of that day is to be impactful!! Can we TRY to do that the right way going forward? All days? Ugh, sorry. I know I'm a bitch.

Here's my second issue. I am SICK and TIRED of being poked, prodded and tested. I mean just totally fed up. I went to the dentist today for a cleaning bc I've been putting it off. It's hard enough dealing with one thing. Dealing with my oral hygiene has not ranked up there lately. I brush multiple times a day, I floss daily. I'm not a negligent toothy person. But the dentist. Not urgent. Not when I have REAL issues. So I go and it was horrible. First off, my teeth have NEVER been the same since I've been sick. The steroids and the meds have ruined my teeth. Steroids destroy bone. My bone is lower in MANY spots under my gums from a few years ago. I have like 4 cavities and I think prior to getting sick I had 4 my whole life. So I had to schedule to go back for more torture with the cavities. In the meantime, my gums in the back were inflamed caused but me not going in for cleanings. It's just impossible to be as thorough brushing back there on your own apparently. So, I needed my gums LASERED today. Yeah. Freakin' smelled so bad. He was burning my face off. I was laying there just thinking, "This shit never ends with me". They got lasered so they could get at the tartar and bacteria that was beneath the inflamed part. So that was awesome. It didn't hurt because he numbed a lot with novacaine gel and what "hurts" for others isn't shit for me to flinch at anymore. BUT----I'm NEVER skipping a cleaning again. A little PSA- GO GET YOUR TEETH CLEANED!!!

Thirdly, I got set up for a surgery date for my second reversal. I am both excited and terrified. There's something really freaky about knowing what kind of pain you are in for. It is truly easier to be surprised by it. The determination hasn't been made about whether he's opening me up again, or going to be able to do everything local through my ostomy site. At this point I don't even care. What's getting cut open all the way for a third time? I basically have no feeling left around the scar so no chance making it worse. There are always risks no matter what. NOT being cut open doesn't even insure a faster recovery because last time my reversal recovery hurt. AND it was local through my ostomy. So flip a coin, doc. Let's do this. Five weeks from now and we are off. I'm having pain around my stoma site and pain passing output so I can't wait to get reversed. Even if I know how bad it's going to be.

I just have a lot going on in my head. Being chronically ill and always having in the back of your head that you'll need to get cut open again is exhausting. Truly exhausting. It's hard not to let it affect every day and the outlook I have in everything in my life. Recovery is exhausting. Pain kicks your ass. The last reversal turned into a slew of other problems which of course led to more complicated surgeries and another ostomy. Knowing that I'm basically going backwards into that situation again is hard because I can't help but have the little nag in my brain wondering if it's going to end up the same way in a vicious cycle of issues. Hoping not. Thanks for letting me vent.
---->> Get your teeth cleaned and don't take your health for granted. XO

So a few things. This is probably NOT going to be a shiny, happy post. Just warning. I'm a BITCH. First things first, yesterday was World IBD day and I posted and retweeted and what not which is fine bc all the other days of the year I do that too so it's cool. I was on a few sites and groups yesterday getting all bent out of shape. EVERY SINGLE THING was "bring awareness TODAY on World IBD day". "Wear your purple TODAY to bring awareness"... blah blah blah. Seriously. These are the same people who hide their illness, are ashamed of their scars, embarrassed by their ostomies and NEVER talk about their illness outside their locked down Facebook group. Hey, we all have our things. Not all of us are as comfortable with things as others are. I get it. BUT DON"T BLAST THE SHIT OUT OF THE INTERWEBS ONE DAY A YEAR IN THE NAME OF IBD AWARENESS. Because you blasting Twitter is NOT bringing awareness. The average person is not following #WorldIBDday. Bringing awareness to our illness is a DAILY job. You want people to "get" what IBD is about so bad? Do you really? Then open your mouth the OTHER 364 days a year in REAL life. I will guarantee I have enlightened more people this year NOT wearing purple and just by peppering my conversation with my struggle and NEVER hiding what I am, than you do wearing your purple that no one looks twice at. Wearing an ostomy bag to the beach and not hiding it will spark more conversation and offer more chances to inform and educate than posting meme's all damn day long on World IBD day. Don't get me wrong, I love that we have a day. But the point of that day is to be impactful!! Can we TRY to do that the right way going forward? All days? Ugh, sorry. I know I'm a bitch.

Here's my second issue. I am SICK and TIRED of being poked, prodded and tested. I mean just totally fed up. I went to the dentist today for a cleaning bc I've been putting it off. It's hard enough dealing with one thing. Dealing with my oral hygiene has not ranked up there lately. I brush multiple times a day, I floss daily. I'm not a negligent toothy person. But the dentist. Not urgent. Not when I have REAL issues. So I go and it was horrible. First off, my teeth have NEVER been the same since I've been sick. The steroids and the meds have ruined my teeth. Steroids destroy bone. My bone is lower in MANY spots under my gums from a few years ago. I have like 4 cavities and I think prior to getting sick I had 4 my whole life. So I had to schedule to go back for more torture with the cavities. In the meantime, my gums in the back were inflamed caused but me not going in for cleanings. It's just impossible to be as thorough brushing back there on your own apparently. So, I needed my gums LASERED today. Yeah. Freakin' smelled so bad. He was burning my face off. I was laying there just thinking, "This shit never ends with me". They got lasered so they could get at the tartar and bacteria that was beneath the inflamed part. So that was awesome. It didn't hurt because he numbed a lot with novacaine gel and what "hurts" for others isn't shit for me to flinch at anymore. BUT----I'm NEVER skipping a cleaning again. A little PSA- GO GET YOUR TEETH CLEANED!!!

Thirdly, I got set up for a surgery date for my second reversal. I am both excited and terrified. There's something really freaky about knowing what kind of pain you are in for. It is truly easier to be surprised by it. The determination hasn't been made about whether he's opening me up again, or going to be able to do everything local through my ostomy site. At this point I don't even care. What's getting cut open all the way for a third time? I basically have no feeling left around the scar so no chance making it worse. There are always risks no matter what. NOT being cut open doesn't even insure a faster recovery because last time my reversal recovery hurt. AND it was local through my ostomy. So flip a coin, doc. Let's do this. Five weeks from now and we are off. I'm having pain around my stoma site and pain passing output so I can't wait to get reversed. Even if I know how bad it's going to be.

I just have a lot going on in my head. Being chronically ill and always having in the back of your head that you'll need to get cut open again is exhausting. Truly exhausting. It's hard not to let it affect every day and the outlook I have in everything in my life. Recovery is exhausting. Pain kicks your ass. The last reversal turned into a slew of other problems which of course led to more complicated surgeries and another ostomy. Knowing that I'm basically going backwards into that situation again is hard because I can't help but have the little nag in my brain wondering if it's going to end up the same way in a vicious cycle of issues. Hoping not. Thanks for letting me vent.
---->> Get your teeth cleaned and don't take your health for granted. XO

Long and winding road....

Hey there. It's been some time since I've written. To be honest I just didn't want to write the same old crap because nothing has been changing. Life is still going on while I am still in pain, on meds, struggling through my days and trying to participate in life when I generally want to stay in bed. I have felt numb the last few months. Fed up with my issues. Feeling inadequate and like a failure. Feeling depressed and like a burden to my family. My two year old knows to find me in bed a lot. She's already used to the reality of her sick mom.
 Aside from summer life ending(pretty uneventful), potty training with Daughter #2,  Daughter #1 starting swim and school again, it's just been the same bullshit with me. It's really brought out the NY bitch in me quite a bit. I'm definitely no southern belle.

 One big, outstanding thing is that I had my Social Security Disability hearing in August and I won! Yep. After being denied since 2010 and being told I'm not sick despite surgeries, daily meds that make me less than able to function and chronic issues, I finally got in front of a judge who very quickly put forth judgement in my favor. I cried. It was a big deal. I'll finally be able to get some income while I'm figuring out how to get myself back in working order. The added stress of not contributing to my household didn't help my already unstable self worth. I'm not built to be dependent financially on someone. I'm just not that girl. I like my money. I like financial confidence. So this will help.
I feel like the fight went on forever. Redundant paperwork and bureaucratic nonsense. So obnoxious.
I've been having horrible abdominal pain aside from my other issues with the cuffitis and pouchitis. I am going to see some specialist at Baylor in Dallas as the meds and steroids are not doing much. And I'm basically immune to antibiotics at this point. I couldn't begin to count how many rounds I've been on over the last 4 years. It's nuts. There has been talk of a temporary ileostomy again to let my pouch and cuffitis get a time out and heal. So that surgery is looming on the horizon.
I had a CT scan last month which showed a mass and according to my colorectal surgeon it is nothing gut related so referred me to my Gyno. I got an ultrasound with my Gyno and apparently my left fallopian tube is blown up like a sausage and needs to come out. Yippee-- more surgery! I know.. everyone is so surprised. I'm going to run out of organs. A fallopian tube is about the size around as a piece of uncooked spaghetti. Mine is blown up to almost 2cm. 3/4 of an inch. So since she was going in for one, she was just going to take both. Apparently there is a lot of info out now showing that ovarian cancer starts in the tubes anyway and since I've had a tubal there's no point finding out why this is happening so we are just eliminating the problem. We also discussed my autoimmune issues, my dysplasia history and the fact that many women with IBD also have related female issues as a result. If I end up having more GI surgery it will increase my chances of adhesions and could lead to more pelvic issues so in the end my Gyno and I decided to clean me out. Everything but the ovaries are going because I'm so pre menopausal and it would be silly to put me on Hormone Replacement while I'm dealing with all these other meds. So I'm getting opened up AGAIN. Is it weird it doesn't bother me? Doesn't even phase me in the slightest.
When my Gyno saw the ultrasound she just matter of fact said she had to go in and get the tube out. I shrugged and said, "I figured". That's how nonchalant surgery and hospitalization is now. It's not even rational but it's my life.
I've been saying for a while that I'm used to pain. Well, it's not that I'm used to it as it's just such a normal part of every single day. It's expected. I'm used to it's presence not the actual pain. That sucks no matter what.
Pain changes you. It really does break down your spirit. So much of being sick isn't in the physical as it's in the mental fight. The fight to maintain yourself despite hurting, giving up activities and just all in all having your life become almost unrecognizable. I am, at times, unrecognizable. My lack of energy and lack of involvement in things is not who I am. Well, not who I was. It's a struggle and a process to not let your head stay in the "old" you. It's a process to accept and adjust to who you have become. It's hard to come up with the right words to explain that but for a long time who I was in my head did not match what my body had become. I'm 35 years old and that depresses the shit out of me. I can't just take off running. Firstly, I have zero muscle strength from my daily fatigue and not using my body. I am chronically dehydrated from that whole no colon thing. Pushing myself through the pain is the easy part. You do what you have to but it's just different when your body CAN'T. I mentally prepare for the littlest things. Things most people take for granted. Getting in and out of the car hurts. My sleep sucks and I'm up for hours every night. Getting groceries will wipe me out until the next day. It's stupid. Just 100% stupid.
I have many days I just cry at the realization that life just carries on. It is not stopping until I am healthy again. I'll be 36 this week. I'm not kidding when I say I have lost the last few years of my life. Those years haven't been mine no matter how hard I battled to control it and live it. The last 4 years have belonged to my illness. Hey, I'm playing the hand I'm dealt because that's all I can do, but I don't have to like my shitty hand. I haven't lived. I've been going through the motions the best I can given the circumstances. It's very upsetting. What's more upsetting are the people who are healthy and go through life the same way. They have no limitations, nothing holding them back but themselves yet they are content to not fully embrace everything. I'd trade one day with them at this point because I'm just so fed up. I'm ready to become bionic and be done with it.
So that's my update from the last month and a half. Just more twists and turns and yet, it's all the same. I'm not sure how that can be but it is. I want more. I'm not satisfied with what's going on. I'm not satisfied with the turns my life has been taking. It is truly hard to fight for more, for extraordinary, when it takes everything you have to fight to be normal. To go to dinner, to do a load of laundry, to blow dry my damn hair. Touring Europe really isn't in the cards when a 45 minute car ride wipes me out.
As I'm getting older the famous "Bucket List" is getting longer but I'm feeling less confident any of it will happen. And not to be an asshole, but I deserve it. This shit has been long, and exhausting and excruciating and I deserve a fucking yacht vacation in Greece and unlimited wine in Italy. So help me.... my road keeps winding and if it's the last thing I do, I'm going to pave it EXACTLY where I WANT it to go.
Hope everyone is well. Thanks for reading.
Read, love, share.
XO

Hey there. It's been some time since I've written. To be honest I just didn't want to write the same old crap because nothing has been changing. Life is still going on while I am still in pain, on meds, struggling through my days and trying to participate in life when I generally want to stay in bed. I have felt numb the last few months. Fed up with my issues. Feeling inadequate and like a failure. Feeling depressed and like a burden to my family. My two year old knows to find me in bed a lot. She's already used to the reality of her sick mom.
 Aside from summer life ending(pretty uneventful), potty training with Daughter #2,  Daughter #1 starting swim and school again, it's just been the same bullshit with me. It's really brought out the NY bitch in me quite a bit. I'm definitely no southern belle.

 One big, outstanding thing is that I had my Social Security Disability hearing in August and I won! Yep. After being denied since 2010 and being told I'm not sick despite surgeries, daily meds that make me less than able to function and chronic issues, I finally got in front of a judge who very quickly put forth judgement in my favor. I cried. It was a big deal. I'll finally be able to get some income while I'm figuring out how to get myself back in working order. The added stress of not contributing to my household didn't help my already unstable self worth. I'm not built to be dependent financially on someone. I'm just not that girl. I like my money. I like financial confidence. So this will help.
I feel like the fight went on forever. Redundant paperwork and bureaucratic nonsense. So obnoxious.
I've been having horrible abdominal pain aside from my other issues with the cuffitis and pouchitis. I am going to see some specialist at Baylor in Dallas as the meds and steroids are not doing much. And I'm basically immune to antibiotics at this point. I couldn't begin to count how many rounds I've been on over the last 4 years. It's nuts. There has been talk of a temporary ileostomy again to let my pouch and cuffitis get a time out and heal. So that surgery is looming on the horizon.
I had a CT scan last month which showed a mass and according to my colorectal surgeon it is nothing gut related so referred me to my Gyno. I got an ultrasound with my Gyno and apparently my left fallopian tube is blown up like a sausage and needs to come out. Yippee-- more surgery! I know.. everyone is so surprised. I'm going to run out of organs. A fallopian tube is about the size around as a piece of uncooked spaghetti. Mine is blown up to almost 2cm. 3/4 of an inch. So since she was going in for one, she was just going to take both. Apparently there is a lot of info out now showing that ovarian cancer starts in the tubes anyway and since I've had a tubal there's no point finding out why this is happening so we are just eliminating the problem. We also discussed my autoimmune issues, my dysplasia history and the fact that many women with IBD also have related female issues as a result. If I end up having more GI surgery it will increase my chances of adhesions and could lead to more pelvic issues so in the end my Gyno and I decided to clean me out. Everything but the ovaries are going because I'm so pre menopausal and it would be silly to put me on Hormone Replacement while I'm dealing with all these other meds. So I'm getting opened up AGAIN. Is it weird it doesn't bother me? Doesn't even phase me in the slightest.
When my Gyno saw the ultrasound she just matter of fact said she had to go in and get the tube out. I shrugged and said, "I figured". That's how nonchalant surgery and hospitalization is now. It's not even rational but it's my life.
I've been saying for a while that I'm used to pain. Well, it's not that I'm used to it as it's just such a normal part of every single day. It's expected. I'm used to it's presence not the actual pain. That sucks no matter what.
Pain changes you. It really does break down your spirit. So much of being sick isn't in the physical as it's in the mental fight. The fight to maintain yourself despite hurting, giving up activities and just all in all having your life become almost unrecognizable. I am, at times, unrecognizable. My lack of energy and lack of involvement in things is not who I am. Well, not who I was. It's a struggle and a process to not let your head stay in the "old" you. It's a process to accept and adjust to who you have become. It's hard to come up with the right words to explain that but for a long time who I was in my head did not match what my body had become. I'm 35 years old and that depresses the shit out of me. I can't just take off running. Firstly, I have zero muscle strength from my daily fatigue and not using my body. I am chronically dehydrated from that whole no colon thing. Pushing myself through the pain is the easy part. You do what you have to but it's just different when your body CAN'T. I mentally prepare for the littlest things. Things most people take for granted. Getting in and out of the car hurts. My sleep sucks and I'm up for hours every night. Getting groceries will wipe me out until the next day. It's stupid. Just 100% stupid.
I have many days I just cry at the realization that life just carries on. It is not stopping until I am healthy again. I'll be 36 this week. I'm not kidding when I say I have lost the last few years of my life. Those years haven't been mine no matter how hard I battled to control it and live it. The last 4 years have belonged to my illness. Hey, I'm playing the hand I'm dealt because that's all I can do, but I don't have to like my shitty hand. I haven't lived. I've been going through the motions the best I can given the circumstances. It's very upsetting. What's more upsetting are the people who are healthy and go through life the same way. They have no limitations, nothing holding them back but themselves yet they are content to not fully embrace everything. I'd trade one day with them at this point because I'm just so fed up. I'm ready to become bionic and be done with it.
So that's my update from the last month and a half. Just more twists and turns and yet, it's all the same. I'm not sure how that can be but it is. I want more. I'm not satisfied with what's going on. I'm not satisfied with the turns my life has been taking. It is truly hard to fight for more, for extraordinary, when it takes everything you have to fight to be normal. To go to dinner, to do a load of laundry, to blow dry my damn hair. Touring Europe really isn't in the cards when a 45 minute car ride wipes me out.
As I'm getting older the famous "Bucket List" is getting longer but I'm feeling less confident any of it will happen. And not to be an asshole, but I deserve it. This shit has been long, and exhausting and excruciating and I deserve a fucking yacht vacation in Greece and unlimited wine in Italy. So help me.... my road keeps winding and if it's the last thing I do, I'm going to pave it EXACTLY where I WANT it to go.
Hope everyone is well. Thanks for reading.
Read, love, share.
XO

WEGO challenge Day #11 -- social media, what, who, when, wow!

Today's prompt. 

Write about your favorite social network. Do you love Twitter? Facebook? Pinterest? Why?

I love the internet. I can not imagine what life would have been like in High School or college(the first time) with the 24/7 connection to the world. 

Those who know me, know I love them all. Facebook can be oh so annoying, but the positives of what I have gotten from it, make me hang in there. I have reconnected with people who I lost touch with. I get to see where their lives have gone, see their beautiful kids, faces that bring back great memories, and it's effortless to connect and share pics and info with many people at once. Plus, I have a built in IBD network of so many wonderful people that I have never met, and may never meet, who get it and understand and have been in my shoes and me in their's. My facebook IBD groups made me feel less scared and isolated and singular. It allowed me to own my struggle with IBD. It's brilliant!

I also love Twitter. I love getting all my news headlines, traffic issues, funny tidbits, my IBD community exchanges blurbs about their shitty days or their successes. I love the simplicity of the retweet. I love seeing the randomness that celebrities come up with on their accounts. 

On my old macbook. I'm sure my smartphone was with me too.

I'm much newer to Pinterest but I do enjoy it. It is unreal the ideas and recipes and home decor and outfits and picture scenarios can be in one place. It really seems endless and could take up an entire day. I like that everything is on it's own little boards and it becomes it's own little way of passing ideas and stories. 

I use all three to share my blog and share my journey and pass along details and stories of people that I admire or connect with and feel others should read about. 

I love it. I love that you can find out virtually anything in a matter of seconds. I love video chatting and think there should be more of that. I remember dial up with a phone cord stretched into the spare room of my parents house. I remember when AOL disks came in the mail every other day. Amazing how much has changed. I still write thank you cards though. You know, the ones you put a stamp on and mail?! =)

Today's prompt. 

Write about your favorite social network. Do you love Twitter? Facebook? Pinterest? Why?

I love the internet. I can not imagine what life would have been like in High School or college(the first time) with the 24/7 connection to the world. 

Those who know me, know I love them all. Facebook can be oh so annoying, but the positives of what I have gotten from it, make me hang in there. I have reconnected with people who I lost touch with. I get to see where their lives have gone, see their beautiful kids, faces that bring back great memories, and it's effortless to connect and share pics and info with many people at once. Plus, I have a built in IBD network of so many wonderful people that I have never met, and may never meet, who get it and understand and have been in my shoes and me in their's. My facebook IBD groups made me feel less scared and isolated and singular. It allowed me to own my struggle with IBD. It's brilliant!

I also love Twitter. I love getting all my news headlines, traffic issues, funny tidbits, my IBD community exchanges blurbs about their shitty days or their successes. I love the simplicity of the retweet. I love seeing the randomness that celebrities come up with on their accounts. 

On my old macbook. I'm sure my smartphone was with me too.

I'm much newer to Pinterest but I do enjoy it. It is unreal the ideas and recipes and home decor and outfits and picture scenarios can be in one place. It really seems endless and could take up an entire day. I like that everything is on it's own little boards and it becomes it's own little way of passing ideas and stories. 

I use all three to share my blog and share my journey and pass along details and stories of people that I admire or connect with and feel others should read about. 

I love it. I love that you can find out virtually anything in a matter of seconds. I love video chatting and think there should be more of that. I remember dial up with a phone cord stretched into the spare room of my parents house. I remember when AOL disks came in the mail every other day. Amazing how much has changed. I still write thank you cards though. You know, the ones you put a stamp on and mail?! =)

WEGO Writing challenge Day #10. --- Picture Perfect.

Here's the prompt---->

HAWMC Day 10: Wordless Wednesday!

It’s often hard to like pictures of ourselves – post your favorite picture of yourself.  

I rarely like a picture of myself, especially since getting sick. My hair is different, my face looks different, my body composition is different, all the weight fluctuations have created a skewed body image in my head. It sucks. Every once in a while I'll see a picture taken that reminds me of the 'old' me and where I think, "Ok, I look pretty good!". I don't know. My hair had grown in a bit and I had a good cut, most of my fat prednisone face was gone, my eyelashes look nice and it was date night! It's few and far between. Anyway, here's one from a while ago I really like..... 

HAHAHAHAHAH-- JUST KIDDING!!!! I do love leopard print shoes though. Ok, here it is for real! ;-)

Here's the prompt---->

HAWMC Day 10: Wordless Wednesday!

It’s often hard to like pictures of ourselves – post your favorite picture of yourself.  

I rarely like a picture of myself, especially since getting sick. My hair is different, my face looks different, my body composition is different, all the weight fluctuations have created a skewed body image in my head. It sucks. Every once in a while I'll see a picture taken that reminds me of the 'old' me and where I think, "Ok, I look pretty good!". I don't know. My hair had grown in a bit and I had a good cut, most of my fat prednisone face was gone, my eyelashes look nice and it was date night! It's few and far between. Anyway, here's one from a while ago I really like..... 

HAHAHAHAHAH-- JUST KIDDING!!!! I do love leopard print shoes though. Ok, here it is for real! ;-)

WEGO Health writers challenge Day #9-- parenting while sick.

Here is today's prompt. I know, I'm totally late--->

HAWMC Day 9:

As a parent with health conditions or parent to a child(ren) with health conditions, what do you hope you’re doing right?

The hardest thing about being sick wasn't the pain. It wasn't losing a job I loved. It wasn't the meds that made me ugly and crazy. It wasn't the hospitalizations. It was how many times I had to tell my daughter, "No". Her PreK, Kinder and 1st grade was consumed with a mom who was always in bed, in pain, in the bathroom, half asleep, on pain meds, in the hospital, at the doctor.... the list goes on. I stopped making promises because I couldn't keep them. I knew if I said we would go to the park tomorrow, chances were that I would in no way be able to handle that. Seeing disappointment on her face so many times killed me. She hated when I was in the hospital. I don't know how much it freaked her out. I know she hated seeing all my IVs and the PICC line and she saw at least one blood transfusion. It was very, very difficult to explain. After my surgery she became more curious as I got better. She would ask to see my stoma. It didn't gross her out. She asked if she would have to get her large intestines taken out. Again, I didn't want to give a false promise so I just said that I hoped not. She told her teacher last year that her Mommy got her large intestines taken out. Her teacher didn't believe her. I'm not sure where she thought a 7 year old would come up with that on her own!! Things are better now. I felt guilty for not being fully present for so long. I felt guilty of the days I was missing. I hated UC for making me unable to be involved with my child. 

Family visits in the big H.

What I hope I did and continue to do right, is just be honest. I never lied about how I felt or what I was going through. She knew my pain. She knew my wounds. Saw my hair fall out. Saw me stapled shut. I always try to be as honest as it is appropriate for her age. I think it makes her understand and not be resentful. If I had hid it, she wouldn't have really 'gotten' it and then possibly would have just resented that I never wanted to play with her.
I hope anyway. I know having surgery gave me my life back. If I lay in bed now, it's a choice, not a necessity. Things have improved. My daughter hasn't forgotten. She's happy I'm better and can be more involved and I think I've disolved any leftover fears she might have had. I hope. 

Here is today's prompt. I know, I'm totally late--->

HAWMC Day 9:

As a parent with health conditions or parent to a child(ren) with health conditions, what do you hope you’re doing right?

The hardest thing about being sick wasn't the pain. It wasn't losing a job I loved. It wasn't the meds that made me ugly and crazy. It wasn't the hospitalizations. It was how many times I had to tell my daughter, "No". Her PreK, Kinder and 1st grade was consumed with a mom who was always in bed, in pain, in the bathroom, half asleep, on pain meds, in the hospital, at the doctor.... the list goes on. I stopped making promises because I couldn't keep them. I knew if I said we would go to the park tomorrow, chances were that I would in no way be able to handle that. Seeing disappointment on her face so many times killed me. She hated when I was in the hospital. I don't know how much it freaked her out. I know she hated seeing all my IVs and the PICC line and she saw at least one blood transfusion. It was very, very difficult to explain. After my surgery she became more curious as I got better. She would ask to see my stoma. It didn't gross her out. She asked if she would have to get her large intestines taken out. Again, I didn't want to give a false promise so I just said that I hoped not. She told her teacher last year that her Mommy got her large intestines taken out. Her teacher didn't believe her. I'm not sure where she thought a 7 year old would come up with that on her own!! Things are better now. I felt guilty for not being fully present for so long. I felt guilty of the days I was missing. I hated UC for making me unable to be involved with my child. 

Family visits in the big H.

What I hope I did and continue to do right, is just be honest. I never lied about how I felt or what I was going through. She knew my pain. She knew my wounds. Saw my hair fall out. Saw me stapled shut. I always try to be as honest as it is appropriate for her age. I think it makes her understand and not be resentful. If I had hid it, she wouldn't have really 'gotten' it and then possibly would have just resented that I never wanted to play with her.
I hope anyway. I know having surgery gave me my life back. If I lay in bed now, it's a choice, not a necessity. Things have improved. My daughter hasn't forgotten. She's happy I'm better and can be more involved and I think I've disolved any leftover fears she might have had. I hope. 

Day #7 WEGO writer's challenge-- People have no filter.

So I was a bit negligent this weekend and missed a few days and here I am picking up on day #7.
Here are the challenge details---

HAWMC Day 7 – Sensationalize!

Say WHAT!? What’s the most ridiculous thing you’ve heard about health or your condition? Where did you hear it and what did you think?

Do I really have to pick ONE ridiculous thing??? There's no way so I will just go ahead and throw a few out there. Note, my comments following would be written in a sarcasm font if available. 

* "Try eating more vegetables. If you eat healthier you'll have less digestive issues." Oh yes Obiwan. I should eat more fiber and ruffage and increase the activity in my ulcerated, bleeding and inflamed colon. Spot on!!! Why didn't my two GIs think of that? Hell, it could have been that easy!? It makes COMPLETE sense that my diseased guts would heal by sending rougher material through it. I feel like such a fool. :-/

* "Oh my god, THAT sucks. I would HATE to be that sick." Oh no, I freaking love it. Nothing like a week in the hospital for a good time. 

* "Try changing your diet." Yep. To what? Let me know what foods magically cure my immune system attacking my colon. 

* "You don't look sick."  This one is a classic among the IBD community. What does sick look like? Have you actually seen my colonoscopy pics? No? Well here, I'll show you what sick looks like from the inside. 

* "It's autoimmune? So you mean, like AIDS?"  That is a syndrome that develops from HIV. Nothing else is affiliated with your immune system besides AIDS. You guessed it. 

* "I wish I could not work and lay in bed all day." Oh do you? You wish you could have excruciating intestinal cramping where you can't stand up? You wish you had the arthritis that comes and goes where my knees feel like someone is stabbing them with a knife and my fingers hurt so bad I can't make a fist? Oh, you wish you were so anemic and malnourished that you can't stand up without blacking out and can't raise your arms over your head to wash your own hair? Really? You do? Hmmmm..that's an odd thing to wish for.

Those are just a few. People are ignorant and thoughtless. Do people really think that if something would work, we wouldn't TRY IT!!! If yoga could cure me, don't you think I'd be at a yoga studio 2 times a day, 7 days a week?? So frustrating. Even more reason to talk and tell my story and attempt to make people more familiar with IBD. 

I went out to a golf facility called Top Golf today. I used to golf a lot before I got sick. Afterward it was too painful to continuously twist and swing a club. It felt so great to do it and I felt so normal!!! Longest drive was only 103 but I'll take it!

Here's me! =)

Hope everyone had a great weekend!! Xo

So I was a bit negligent this weekend and missed a few days and here I am picking up on day #7.
Here are the challenge details---

HAWMC Day 7 – Sensationalize!

Say WHAT!? What’s the most ridiculous thing you’ve heard about health or your condition? Where did you hear it and what did you think?

Do I really have to pick ONE ridiculous thing??? There's no way so I will just go ahead and throw a few out there. Note, my comments following would be written in a sarcasm font if available. 

* "Try eating more vegetables. If you eat healthier you'll have less digestive issues." Oh yes Obiwan. I should eat more fiber and ruffage and increase the activity in my ulcerated, bleeding and inflamed colon. Spot on!!! Why didn't my two GIs think of that? Hell, it could have been that easy!? It makes COMPLETE sense that my diseased guts would heal by sending rougher material through it. I feel like such a fool. :-/

* "Oh my god, THAT sucks. I would HATE to be that sick." Oh no, I freaking love it. Nothing like a week in the hospital for a good time. 

* "Try changing your diet." Yep. To what? Let me know what foods magically cure my immune system attacking my colon. 

* "You don't look sick."  This one is a classic among the IBD community. What does sick look like? Have you actually seen my colonoscopy pics? No? Well here, I'll show you what sick looks like from the inside. 

* "It's autoimmune? So you mean, like AIDS?"  That is a syndrome that develops from HIV. Nothing else is affiliated with your immune system besides AIDS. You guessed it. 

* "I wish I could not work and lay in bed all day." Oh do you? You wish you could have excruciating intestinal cramping where you can't stand up? You wish you had the arthritis that comes and goes where my knees feel like someone is stabbing them with a knife and my fingers hurt so bad I can't make a fist? Oh, you wish you were so anemic and malnourished that you can't stand up without blacking out and can't raise your arms over your head to wash your own hair? Really? You do? Hmmmm..that's an odd thing to wish for.

Those are just a few. People are ignorant and thoughtless. Do people really think that if something would work, we wouldn't TRY IT!!! If yoga could cure me, don't you think I'd be at a yoga studio 2 times a day, 7 days a week?? So frustrating. Even more reason to talk and tell my story and attempt to make people more familiar with IBD. 

I went out to a golf facility called Top Golf today. I used to golf a lot before I got sick. Afterward it was too painful to continuously twist and swing a club. It felt so great to do it and I felt so normal!!! Longest drive was only 103 but I'll take it!

Here's me! =)

Hope everyone had a great weekend!! Xo

Nonstop, little sleep, lots of meds, repeat.

It has been some time!!! Sorry it's been so long... Following my last blog post I was miserable and dealing with some JPouch issues and was in the worst mood for a few days and then life got in the way. I saw my surgeon last week and was basically a wreck. I wasn't sleeping because my skin was so raw and was weeping. NOTHING I did was working. The pain and the spasms kept me up or woke me up multiple times per night. I had lost a very small amount of blood a few times, and after everything I've been through, one drop and I am in an internal panic. I was near a breaking point from exhaustion. My surgeon comes in the room and I just started crying. He didn't know what to do. I launched into my tirade about my misery and exhaustion and just kept crying. He looks at me after I stopped for a second, and says, "Lisa, I don't know how to handle this with you. You are one of the strongest people I have ever treated, with one of the worst cases of UC, and you always have humor and a joke. I can't handle this side of you. I'm going to fix it". Well, naturally that made me cry harder and then lucky me....... I got to have an internal exam. It was my lucky day. Whoop whoop. Once again I will reiterate, I have no shame, dignity or modesty left... LONG GONE!!
So, he prescribes me Valium, more Flexeril(yeah, who knew digestive diseases would get you the good stuff), lidocaine gel(use your imagination) and a topical cream. I'm seriously a walking pharmacy. Want to know how often I fill prescriptions? They don't even glance at my license for a controlled substance anymore because THEY KNOW ME. Crazy. But I digress....
I felt better after leaving the office because my surgeon is great. He will listen, and keep trying to fix whatever the problem is. So many doctors dismiss their patients and are arrogant. I get none of that with mine and it's wonderful.
In the meantime I started classes and it is kicking my ass. A lot of work. A lot of material. It's scary. I am having my moments of being overwhelmed especially when my 18 month old is going nuts, tearing through the house and I'm trying to study tissues samples!! Yikes. No bueno. On top of it, my sleep is very broken which makes the mornings feel like torture. I'm trying to adjust. One thing that is so awesome that most will find weird is that Hubs installed a retro fit Bidet on our master bathroom toilet. OMG seriously, it is amazing!! Everyone should have one. Seriously. Go Bidet. It has changed my life now that I have a JPouch and the skin issues that go along with it as I've explained before.
Anyway- that's been my big exciting news. So great.
Oh, another awesome thing is I am going to be a guest blogger for http://thegreatbowelmovement.org/. I am so excited. They are a great little thing with awesome Tshirts like the one I have that says, "Ask me about my Ostomy". Awareness, awareness and conversation. So important to us IBD activists. As soon as it's up and posted I will link it! So cool.
It's things like that that make me so happy I started blogging.

Well, I am going back to some studying before bed. Test on Monday and I never maximize my weekend as much as I'd like. Have a great night everyone. Thanks for reading. XO

It has been some time!!! Sorry it's been so long... Following my last blog post I was miserable and dealing with some JPouch issues and was in the worst mood for a few days and then life got in the way. I saw my surgeon last week and was basically a wreck. I wasn't sleeping because my skin was so raw and was weeping. NOTHING I did was working. The pain and the spasms kept me up or woke me up multiple times per night. I had lost a very small amount of blood a few times, and after everything I've been through, one drop and I am in an internal panic. I was near a breaking point from exhaustion. My surgeon comes in the room and I just started crying. He didn't know what to do. I launched into my tirade about my misery and exhaustion and just kept crying. He looks at me after I stopped for a second, and says, "Lisa, I don't know how to handle this with you. You are one of the strongest people I have ever treated, with one of the worst cases of UC, and you always have humor and a joke. I can't handle this side of you. I'm going to fix it". Well, naturally that made me cry harder and then lucky me....... I got to have an internal exam. It was my lucky day. Whoop whoop. Once again I will reiterate, I have no shame, dignity or modesty left... LONG GONE!!
So, he prescribes me Valium, more Flexeril(yeah, who knew digestive diseases would get you the good stuff), lidocaine gel(use your imagination) and a topical cream. I'm seriously a walking pharmacy. Want to know how often I fill prescriptions? They don't even glance at my license for a controlled substance anymore because THEY KNOW ME. Crazy. But I digress....
I felt better after leaving the office because my surgeon is great. He will listen, and keep trying to fix whatever the problem is. So many doctors dismiss their patients and are arrogant. I get none of that with mine and it's wonderful.
In the meantime I started classes and it is kicking my ass. A lot of work. A lot of material. It's scary. I am having my moments of being overwhelmed especially when my 18 month old is going nuts, tearing through the house and I'm trying to study tissues samples!! Yikes. No bueno. On top of it, my sleep is very broken which makes the mornings feel like torture. I'm trying to adjust. One thing that is so awesome that most will find weird is that Hubs installed a retro fit Bidet on our master bathroom toilet. OMG seriously, it is amazing!! Everyone should have one. Seriously. Go Bidet. It has changed my life now that I have a JPouch and the skin issues that go along with it as I've explained before.
Anyway- that's been my big exciting news. So great.
Oh, another awesome thing is I am going to be a guest blogger for http://thegreatbowelmovement.org/. I am so excited. They are a great little thing with awesome Tshirts like the one I have that says, "Ask me about my Ostomy". Awareness, awareness and conversation. So important to us IBD activists. As soon as it's up and posted I will link it! So cool.
It's things like that that make me so happy I started blogging.

Well, I am going back to some studying before bed. Test on Monday and I never maximize my weekend as much as I'd like. Have a great night everyone. Thanks for reading. XO

Has the fight left this fighter?

So here's this Gym Class Heroes song called The Fighter. I absolutely love it. It actually chokes me up. It's about a boxer, (even though the video features an Olympic gymnast) but man, most of the lyrics are talking about me the last few years. Have a listen.






It's great isn't it? It makes me realize that whether people acknowledge it or not, I'm a fighter. I've been fighting daily for years. Even now, post colectomy, my fight continues. It's exhausting. I'm seriously beginning to think my fight is gone. Is that even possible. It's the night before my classes start up and I'm anxious. I need A's, no exceptions or else I retake Anatomy and Physiology to try again or don't move forward in the program. I'm afraid I don't have it anymore. In my brain I have a lot of things I want to accomplish, but it stops there. I should be happy and relieved that life is on a much healthier scale than it's been in years. I know that. I'm not taking it for granted. I still have issues that disrupt my days, my sleep, my eating. I have pain. But it's a different ball game now. Even so, I want to lie in bed. Just because I want to. Because I don't have to be there because I'm malnourished and anemic. I want to lay in bed and be lazy. By choice. But then I feel guilty because I'm pretty sure I told myself when I was balled up in the hospital in pain, a PICC line in my arm because all my veins were shot, that if I ever got healthy and beat this shit, I would never waste another day in bed again. In fact, I know I did. Yet here I am. My lazy ass slugging along. I have this idea that I want to run the CCFA Team Challenge marathon. Of course this depending on my foot healing but for arguments sake let's say it does.... I don't know if I have it in me to push myself anymore. When I was sick I had no choice but to force myself to go on. I somehow made it through days of seeing spots and almost blacking out, being in so much pain it takes your breath away, being too weak to lift a spoon to my mouth, or step up onto a curb. It's amazing the strength we have when THERE IS NO CHOICE. You just do it. Smile through pain and fear. Joke with the nurses when you are scared out of your mind. Take a deep breath as you are about to undergo another invasive test. Or 6 hours of IV infusion for a medicine that shuts your immune system down. And you joke when they can't get a vein, or it blows, or they hit a valve, or they just can't get it and they are rooting under your skin until you tell them to stop. You put your nose in the air when you see people looking at the bruises on your arms, and see how underweight you are and you know exactly what they assume. You keep going. The tears running down your face into your ears because you are lying there listening as they tell you that you need 2 more units of blood because the first two weren't enough.
Maybe that's all I had. I had a certain amount of fight and now my bank's empty. I don't know. Maybe I'm just tapped out for now. The surgeries this year were a lot. They shook me more than I let on day to day. It's not easy getting gutted. Now, when I have pain or discomfort it's just exhausting. Like, come on body... ENOUGH. <Sigh>.  Some days I just don't have it in me to deal. It's heartbreaking after so long. Maybe I just need a fight refill? Recharge... Let's hope there's still some in there somewhere.

So here's this Gym Class Heroes song called The Fighter. I absolutely love it. It actually chokes me up. It's about a boxer, (even though the video features an Olympic gymnast) but man, most of the lyrics are talking about me the last few years. Have a listen.






It's great isn't it? It makes me realize that whether people acknowledge it or not, I'm a fighter. I've been fighting daily for years. Even now, post colectomy, my fight continues. It's exhausting. I'm seriously beginning to think my fight is gone. Is that even possible. It's the night before my classes start up and I'm anxious. I need A's, no exceptions or else I retake Anatomy and Physiology to try again or don't move forward in the program. I'm afraid I don't have it anymore. In my brain I have a lot of things I want to accomplish, but it stops there. I should be happy and relieved that life is on a much healthier scale than it's been in years. I know that. I'm not taking it for granted. I still have issues that disrupt my days, my sleep, my eating. I have pain. But it's a different ball game now. Even so, I want to lie in bed. Just because I want to. Because I don't have to be there because I'm malnourished and anemic. I want to lay in bed and be lazy. By choice. But then I feel guilty because I'm pretty sure I told myself when I was balled up in the hospital in pain, a PICC line in my arm because all my veins were shot, that if I ever got healthy and beat this shit, I would never waste another day in bed again. In fact, I know I did. Yet here I am. My lazy ass slugging along. I have this idea that I want to run the CCFA Team Challenge marathon. Of course this depending on my foot healing but for arguments sake let's say it does.... I don't know if I have it in me to push myself anymore. When I was sick I had no choice but to force myself to go on. I somehow made it through days of seeing spots and almost blacking out, being in so much pain it takes your breath away, being too weak to lift a spoon to my mouth, or step up onto a curb. It's amazing the strength we have when THERE IS NO CHOICE. You just do it. Smile through pain and fear. Joke with the nurses when you are scared out of your mind. Take a deep breath as you are about to undergo another invasive test. Or 6 hours of IV infusion for a medicine that shuts your immune system down. And you joke when they can't get a vein, or it blows, or they hit a valve, or they just can't get it and they are rooting under your skin until you tell them to stop. You put your nose in the air when you see people looking at the bruises on your arms, and see how underweight you are and you know exactly what they assume. You keep going. The tears running down your face into your ears because you are lying there listening as they tell you that you need 2 more units of blood because the first two weren't enough.
Maybe that's all I had. I had a certain amount of fight and now my bank's empty. I don't know. Maybe I'm just tapped out for now. The surgeries this year were a lot. They shook me more than I let on day to day. It's not easy getting gutted. Now, when I have pain or discomfort it's just exhausting. Like, come on body... ENOUGH. <Sigh>.  Some days I just don't have it in me to deal. It's heartbreaking after so long. Maybe I just need a fight refill? Recharge... Let's hope there's still some in there somewhere.

What's left behind..

So last week was Crohn's and Colitis Awareness week and if you are friends with me somewhere online you couldn't miss it because I didn't shut up all week. I try not to be overkill about what I've been through on FB or Twitter (Hence the blog. You can choose to hear it or not), but the fact is I have to be. I'm not whining or crying about it. I certainly don't want you to feel bad for me, and I am not resentful of normal people. It's just that people don't know what the IBD world is and it's upsetting to me. As much as I have no idea what chemo is like, I know about cancer and what the treatments do. Most people have no idea what Colitis or Crohn's is, much less what we go through, what our meds do, what the worst of our symptoms are. Yes, we have abdominal pain. It's not a tummy ache. It is extreme, bring you to the floor pain where you really think you are dying. And many times if the internal bleeding from ulcers is bad enough and you don't get transfused, you will. I would rather go through child birth than be in a flare. The blood loss is indescribable. It's scary. You literally look like a crime scene in the bathroom and it feels like your insides are ready to fall out. It's hard dealing with something and not have people not only not understand, but be completely ignorant to what it is. But enough about the gory stuff.
All last week I had an internal battle of happiness with myself. I have been on some serious meds since 2009 and they've altered me on the outside. My hair is different because it fell out in clumps and grew back so many times. The prednisone gave me moon face a handful of times. It's changed my face. I can't 100% say how, but it's there. I know I'm also 3 years older which isn't helping, but I look different. I'm not happy. I have never been a great beauty or anything but I was perfectly happy with what I saw in the mirror everyday. I don't look like anyone but me. And that's fine. But now I don't look like me. Then there's the havoc on the body. I'm currently 110lbs. I may as well be 210lbs. I hate how I look. I look at 110 and it feels gigantic compared to 95 or 100lbs. I can't get it out of my head. I looked like shit at that weight but compared to that, 110 is huge. Muscle tone gone from dropping weight so fast. The shape of my body is completely different. How I store fat and where, has changed thanks to the wonderful steroid Prednisone. Flares made me drop weight like you wouldn't believe. I could lose 10lbs in a week. I stopped looking at a scale because it was unreal. So, all that weight is falling off, muscle disappearing because I am too weak to use them. Then I go on high doses of steroids to stop the flare. The steroids make you hold water, distribute fat differently all the while giving you a nonstop appetite. Starving all day. So now I can finally eat, and the weight packs on, unnaturally, because of the steroids. Then I taper off and after months, the weight comes off, leaving a body that looks like a strangers. My scars don't bother me at all compared to how much the composition of my body has changed. Don't get me wrong, I may call myself a fat ass at least once a day, but I eat and don't actually act on it. I know I have developed a body image issue from the weight fluctuations. I had no problem eating McDonald's today. Food only stays in my body about 12 hours anyway so I don't gain anything. Hubs actually joked saying he can imagine models finding out how I don't gain weight without a colon and having theirs removed for vanity. It kind of stuck with me. Before I got sick I never realized how much your gut health affects everything.
As I sit here in my size 3 Levi's, bitching about my weight, I'm sure some of you hate me. That wasn't the point of this. I know I'm thin. I'd take some weight to have my 'old' body back. My hipbones stick out weird now. My ribcage too because there isn't a transverse colon across the bottom. Want to know what's horrible. My period cramps. I haven't had any since before I had Daughter #1. Now I feel like I'm 14 years old again, curled up and in misery. Well, all my baby maker bits are slightly in a different spot because my colon is not supporting them anymore. The colon only has millimeters of connective tissue between it and all the cash and prizes. That's why a colectomy can affect sex, conceiving and all that good stuff.
It's a long road. You think when you get a diseased part of your body removed you will just resume your life. You will feel a sense of relief and just pick up where you left off. It's not so simple. What this has left behind for me is still a struggle. It has switched to a more mental/emotional struggle than anything. My body heals faster than my psyche. I look and see something much different than everyone else. I always joke that I'm a fat/skinny girl. It's hard. It's hard to move on. It's hard not recognizing yourself over and over again. I'm hoping I've finished morphing. I seem to be holding steady. I don't seem to gain weight because food isn't in my body long. To be honest, if I start to, it's going to be really hard to deal with. I subconsciously wait for my jeans to be too tight. I wait for something else to change. My hair is still filling back in, although it's never been the same. I'm now considered healthy, but what becoming healthy has left behind is something else. This has taken me three days to write because I kept losing it while typing and couldn't see. Being sick was so much more than my guts. It changed all of me, inside and out.

So last week was Crohn's and Colitis Awareness week and if you are friends with me somewhere online you couldn't miss it because I didn't shut up all week. I try not to be overkill about what I've been through on FB or Twitter (Hence the blog. You can choose to hear it or not), but the fact is I have to be. I'm not whining or crying about it. I certainly don't want you to feel bad for me, and I am not resentful of normal people. It's just that people don't know what the IBD world is and it's upsetting to me. As much as I have no idea what chemo is like, I know about cancer and what the treatments do. Most people have no idea what Colitis or Crohn's is, much less what we go through, what our meds do, what the worst of our symptoms are. Yes, we have abdominal pain. It's not a tummy ache. It is extreme, bring you to the floor pain where you really think you are dying. And many times if the internal bleeding from ulcers is bad enough and you don't get transfused, you will. I would rather go through child birth than be in a flare. The blood loss is indescribable. It's scary. You literally look like a crime scene in the bathroom and it feels like your insides are ready to fall out. It's hard dealing with something and not have people not only not understand, but be completely ignorant to what it is. But enough about the gory stuff.
All last week I had an internal battle of happiness with myself. I have been on some serious meds since 2009 and they've altered me on the outside. My hair is different because it fell out in clumps and grew back so many times. The prednisone gave me moon face a handful of times. It's changed my face. I can't 100% say how, but it's there. I know I'm also 3 years older which isn't helping, but I look different. I'm not happy. I have never been a great beauty or anything but I was perfectly happy with what I saw in the mirror everyday. I don't look like anyone but me. And that's fine. But now I don't look like me. Then there's the havoc on the body. I'm currently 110lbs. I may as well be 210lbs. I hate how I look. I look at 110 and it feels gigantic compared to 95 or 100lbs. I can't get it out of my head. I looked like shit at that weight but compared to that, 110 is huge. Muscle tone gone from dropping weight so fast. The shape of my body is completely different. How I store fat and where, has changed thanks to the wonderful steroid Prednisone. Flares made me drop weight like you wouldn't believe. I could lose 10lbs in a week. I stopped looking at a scale because it was unreal. So, all that weight is falling off, muscle disappearing because I am too weak to use them. Then I go on high doses of steroids to stop the flare. The steroids make you hold water, distribute fat differently all the while giving you a nonstop appetite. Starving all day. So now I can finally eat, and the weight packs on, unnaturally, because of the steroids. Then I taper off and after months, the weight comes off, leaving a body that looks like a strangers. My scars don't bother me at all compared to how much the composition of my body has changed. Don't get me wrong, I may call myself a fat ass at least once a day, but I eat and don't actually act on it. I know I have developed a body image issue from the weight fluctuations. I had no problem eating McDonald's today. Food only stays in my body about 12 hours anyway so I don't gain anything. Hubs actually joked saying he can imagine models finding out how I don't gain weight without a colon and having theirs removed for vanity. It kind of stuck with me. Before I got sick I never realized how much your gut health affects everything.
As I sit here in my size 3 Levi's, bitching about my weight, I'm sure some of you hate me. That wasn't the point of this. I know I'm thin. I'd take some weight to have my 'old' body back. My hipbones stick out weird now. My ribcage too because there isn't a transverse colon across the bottom. Want to know what's horrible. My period cramps. I haven't had any since before I had Daughter #1. Now I feel like I'm 14 years old again, curled up and in misery. Well, all my baby maker bits are slightly in a different spot because my colon is not supporting them anymore. The colon only has millimeters of connective tissue between it and all the cash and prizes. That's why a colectomy can affect sex, conceiving and all that good stuff.
It's a long road. You think when you get a diseased part of your body removed you will just resume your life. You will feel a sense of relief and just pick up where you left off. It's not so simple. What this has left behind for me is still a struggle. It has switched to a more mental/emotional struggle than anything. My body heals faster than my psyche. I look and see something much different than everyone else. I always joke that I'm a fat/skinny girl. It's hard. It's hard to move on. It's hard not recognizing yourself over and over again. I'm hoping I've finished morphing. I seem to be holding steady. I don't seem to gain weight because food isn't in my body long. To be honest, if I start to, it's going to be really hard to deal with. I subconsciously wait for my jeans to be too tight. I wait for something else to change. My hair is still filling back in, although it's never been the same. I'm now considered healthy, but what becoming healthy has left behind is something else. This has taken me three days to write because I kept losing it while typing and couldn't see. Being sick was so much more than my guts. It changed all of me, inside and out.

Crohn's & Colitis Awareness week.

Hello out there. Starting on the 1st, it's Crohn's and Colitis Awareness week. I'm pretty sure we need a month because it continually blows my mind how people have never heard of either disease. 1 in 200 Americans has IBD. That's nothing to ignore. That's a pretty solid number. This is the reason why I basically don't shut up about my life and I'm online and talking about my guts, and my aches and pains nonstop. We, the IBDers, can't shut up. We have to be a pain in the ass and keep telling our stories.
This week has been a pretty rough week. I'm 8 days out from foot surgery and it still hurts pretty bad so I'm still taking Vicodin for it. Well, how many narcotics can a 110lb girl take a day? My usual routine is Lomotil twice a day to slow my system down(narcotic as it is related to demerol), and Flexeril(muscle relaxer) for some continuing spasms in a delicate area that are very painful. Sooooo- yeah... Taking some Hydros on top of that is probably a recipe for disaster so I quit the Flexeril and the spasms came back. But if I take that with the Hydros I go into a coma. I also cut my Lomotil in half which has triggered me cramping and going to the bathroom nonstop. It has a been miserable but I think I finally got a combo figured out that is working. <sigh>
I'm only 9 weeks post Op and I guess I think I'm Wonder Woman and should be just recovered and normal and moving on. This week taught me I'm far from it. I know it generally takes a year for the Jpouch to get working correctly and adapt but here I am in 9 weeks getting pissed because I'm still having issues. I'm nuts. I'm slowly coming to realize I am never going to be "normal". All of you who have known me for years are laughing because you know I never was! But seriously, I guess I had a teeny tiny delusion that I'd get put back together, and the only way I'd know about all these issues were from my scars. Uhhh- yeah. Nice one Lisa. Dumbass. I will forever have issues with food. There will always be things that I will need to avoid, or will give me pain. I may always have scar tissue pain. I may develop adhesions later and they cause pain. I may develop pouchitis and be sick from that. These are all things I know. I do. I just have to remember it daily and be conscious of it. I have to stop myself from overdoing it. I have to avoid things I REALLY enjoy, like salads, and filet mignon.
I will never be a normal person. Technically, I no longer have UC. I kicked it's ass big time. But I am forever an IBD warrior. I may always have issues. I wouldn't go back. Four years ago my symptoms started. I ignored them. I was recently separated and going out a lot. Working a lot. Sleeping little. I blamed them on my lifestyle change. I didn't have time to be sick. I was running nonstop as a newly single mom, running a store, having a social life again. By the beginning of 2009 my symptoms got worse and weird. I pushed through it still. I don't know if I had gone to a doctor sooner if it would have mattered or not. I think no matter I was heading toward getting gutted. I'm happy I went through it. I've learned a lot about my capabilities. I'm a strong bitch. I overcame. I fought even when every cell in my body wanted to collapse and stop. I'm happy it came to surgery too. No more biologics being pumped into me. My hair is pretty much grown in from all of it falling out from steroids. The meds always scared me more than being gutted. Truly. I don't think there is anything that can scare me anymore.
Back to Awareness week! Purple is the awareness color for IBD. I've made sure to rock my purple daily. Here I am for the week. ;-) Enjoy.
Listen to your bodies everyone. You know when something is off, and not normal. Don't wait. It won't hurt to get tested or checked out. It can hurt to wait. Take care of your body. Be your own advocate and cheerleader. Speak up about your journey and battles. You never know who it may help.
XOXO

Day #1. Great Bowel Movement shirt, CCFA bracelet, Girls w Guts bracelet

Day #2 Purple nails.

Day #3 I had a rough couple nights.  I was very crabby.  Still in purple. 

Today, day #4.Weirdo! No bangs. I hate me without bangs now. Still exhausted. Up til 4am.

Hello out there. Starting on the 1st, it's Crohn's and Colitis Awareness week. I'm pretty sure we need a month because it continually blows my mind how people have never heard of either disease. 1 in 200 Americans has IBD. That's nothing to ignore. That's a pretty solid number. This is the reason why I basically don't shut up about my life and I'm online and talking about my guts, and my aches and pains nonstop. We, the IBDers, can't shut up. We have to be a pain in the ass and keep telling our stories.
This week has been a pretty rough week. I'm 8 days out from foot surgery and it still hurts pretty bad so I'm still taking Vicodin for it. Well, how many narcotics can a 110lb girl take a day? My usual routine is Lomotil twice a day to slow my system down(narcotic as it is related to demerol), and Flexeril(muscle relaxer) for some continuing spasms in a delicate area that are very painful. Sooooo- yeah... Taking some Hydros on top of that is probably a recipe for disaster so I quit the Flexeril and the spasms came back. But if I take that with the Hydros I go into a coma. I also cut my Lomotil in half which has triggered me cramping and going to the bathroom nonstop. It has a been miserable but I think I finally got a combo figured out that is working. <sigh>
I'm only 9 weeks post Op and I guess I think I'm Wonder Woman and should be just recovered and normal and moving on. This week taught me I'm far from it. I know it generally takes a year for the Jpouch to get working correctly and adapt but here I am in 9 weeks getting pissed because I'm still having issues. I'm nuts. I'm slowly coming to realize I am never going to be "normal". All of you who have known me for years are laughing because you know I never was! But seriously, I guess I had a teeny tiny delusion that I'd get put back together, and the only way I'd know about all these issues were from my scars. Uhhh- yeah. Nice one Lisa. Dumbass. I will forever have issues with food. There will always be things that I will need to avoid, or will give me pain. I may always have scar tissue pain. I may develop adhesions later and they cause pain. I may develop pouchitis and be sick from that. These are all things I know. I do. I just have to remember it daily and be conscious of it. I have to stop myself from overdoing it. I have to avoid things I REALLY enjoy, like salads, and filet mignon.
I will never be a normal person. Technically, I no longer have UC. I kicked it's ass big time. But I am forever an IBD warrior. I may always have issues. I wouldn't go back. Four years ago my symptoms started. I ignored them. I was recently separated and going out a lot. Working a lot. Sleeping little. I blamed them on my lifestyle change. I didn't have time to be sick. I was running nonstop as a newly single mom, running a store, having a social life again. By the beginning of 2009 my symptoms got worse and weird. I pushed through it still. I don't know if I had gone to a doctor sooner if it would have mattered or not. I think no matter I was heading toward getting gutted. I'm happy I went through it. I've learned a lot about my capabilities. I'm a strong bitch. I overcame. I fought even when every cell in my body wanted to collapse and stop. I'm happy it came to surgery too. No more biologics being pumped into me. My hair is pretty much grown in from all of it falling out from steroids. The meds always scared me more than being gutted. Truly. I don't think there is anything that can scare me anymore.
Back to Awareness week! Purple is the awareness color for IBD. I've made sure to rock my purple daily. Here I am for the week. ;-) Enjoy.
Listen to your bodies everyone. You know when something is off, and not normal. Don't wait. It won't hurt to get tested or checked out. It can hurt to wait. Take care of your body. Be your own advocate and cheerleader. Speak up about your journey and battles. You never know who it may help.
XOXO

Day #1. Great Bowel Movement shirt, CCFA bracelet, Girls w Guts bracelet

Day #2 Purple nails.

Day #3 I had a rough couple nights.  I was very crabby.  Still in purple. 

Today, day #4.Weirdo! No bangs. I hate me without bangs now. Still exhausted. Up til 4am.