The mask I wear...

Well, I've been meaning to bang this bitch fest out for a few days so here goes...
I HATE IBD. I HATE what it has done to my body and my life. I HATE being THAT girl who can't hold up her end of the deal because I have no idea when my body wil decide to betray me. I HATE being forever changed. Even though being sick has taught me a lot about myself and has revealed a strength and resolve I never knew I had, I kinda liked me the way I was. I don't think I needed to learn that I could endure this much pain. If I never had it, I think I would still be kick ass and living my life my way like Hurricane Lisa does. Instead, I got sidetracked and held back along with the lesson. The last 10 days have been unbearable for me. Besides the wonderful rectal spasms that are in a pain category all their own, I developed yet another horrible rash. IBDers call it butt burn but this is butt burn times 100. It is full on adult diaper rash. No wonder babies scream bloody murder with rashes. Holy shit, it hurts. My skin is so raw it's weeping. I have cut back my food and my fluids because going to the bathroom is pure torture. Even peeing. Your pee is acidic. That on raw skin can make you cry. And it has. I go through all of this with a smile on my face. With my makeup done, and my hair blow dried and a cute outfit on. I crack jokes as my facade. I'm due a mother effing Oscar is what it is.
Someone in one of my IBD groups on Facebook had commented this weekend that a picture I posted showed me looking happy and healthy. It's all bullshit. Smoke and mirrors. Urban Decay concealer and some great highlighter. Here's me faking everything being swell while I'm in pain just sitting down.

Concealer, bronzer, highlighter and Norco= fake health. 

My dad was in town for Father's Day. I wasn't about to let my pain control his trip. We went to dinner. I smiled and took pictures on Father's Day while on the inside I was cringing and in pain. My head a fog of pain killers and muscle relaxers just to allow me to function at a basic level. Moving sends pain searing through my body. I reapply my lipgloss and smile and make a joke. It's such a game. It's such bullshit. I want my life back. I don't want to leave work early because I'm in pain. I freaking HATE it. And I'm skinny. I'm at the lowest end of a healthy weight for 5'3". A few days of pain and I drop 5-8 pounds because as it is I absorb nothing. But I look great. I'm so skinny. I'm so lucky. Oh yeah--- Soooooo lucky. :|  I can buy clothes in the girls department and I lost my tits. Yeah- I lucked the hell right out with the big ole IBD lottery. Ugh--- I'd trade all this crap for 40 pounds and a properly functioning body.
So my surgeon was out of town last week and I finally got in to see him today at 5.

Just a normal day. Waiting for more pain at the surgeon's. 

 I need to get my pouch scoped because he doesn't feel the CT AND the MRI were comprehensive enough to figure out what's going on. I'm in too much pain. Spasms won't stop. My pouch surgery was textbook and now to have all this post OP shit is ridiculous. My surgeon says to me tonight that all my issues are issues that are present with Crohn's. CROHN'S. No. I refuse to accept that until there is something to substantiate it. I was tested and retested and biopsied within an inch of my life and NOTHING ever pointed to Crohn's. My surgeon had my small intestines IN HIS HANDS on purpose last May to triple check. I got gutted and cut wide open instead of doing it laproscopically so that he could better check my small bowel before gutting me.
I just don't know. So I get to go have my pouch checked out at Baylor with my surgeon, his partner and some other superman colo-rectal guy so they can all use me as a science experiment and try to problem solve. Luckily, I don't have any modesty left whatsoever so 3 grown men scoping my ass is just another day for me.
It is days like today where I feel this tiny pull telling me to go back to my ileostomy. Yes...seriously. Where many feel ostomies are a death sentence, I would actually consider going back.
I'm emotionally exhausted. I'm physically shutting down some days. I don't sleep from pain. I feel like I've been fighting an internal war for 4 years. How do I hang on? How do I get up everyday and bother faking it and keep going. Wouldn't it be easier to stay in bed, screw wearing makeup and putting an outfit together. Wouldn't that be more reflective of "sick"?? Sure. But I know that's not me. IBD may be destroying my body but I try so hard to stop it from destroying who I am. I give up a lot as it is. I don't feel independent anymore. Well, I'm not. I went back to work to try to regain some of it and it is a daily battle every time I have to go in. That's not me. I keep trying to force myself back into a Lisa that isn't really there anymore. And I'm stubborn and just keep trying.  I rely on Mat so much. He went out on a whim yesterday and got a new truck. I want to do that. I'm so afraid I'm stuck in this dependent state forever because these issues won't end. I hate putting that on him too. It's not fair to him. I could go around and around. It won't change anything right now. I just need to face the reality head on and make the most of it. In the meantime, my Disability hearing is finally in August. Yeah, over a year after it was requested because I got denied 3 times because I should have had no problem working fulltime while I was hemorrhaging blood daily about 30 times a day. Yeah- sounds completely doable to be holding a job with that going on.
Ok, I'm ending on this because the pain meds are kicked in. My surgeon took me off work for two weeks while I get tested, scoped and so my skin can heal. He wants me basically doing nothing to try to keep the spasms at bay and help my skin heal. <Sigh>  Defective. I feel like a defective burden. I don't know how much more I can take.
Good night all....

Well, I've been meaning to bang this bitch fest out for a few days so here goes...
I HATE IBD. I HATE what it has done to my body and my life. I HATE being THAT girl who can't hold up her end of the deal because I have no idea when my body wil decide to betray me. I HATE being forever changed. Even though being sick has taught me a lot about myself and has revealed a strength and resolve I never knew I had, I kinda liked me the way I was. I don't think I needed to learn that I could endure this much pain. If I never had it, I think I would still be kick ass and living my life my way like Hurricane Lisa does. Instead, I got sidetracked and held back along with the lesson. The last 10 days have been unbearable for me. Besides the wonderful rectal spasms that are in a pain category all their own, I developed yet another horrible rash. IBDers call it butt burn but this is butt burn times 100. It is full on adult diaper rash. No wonder babies scream bloody murder with rashes. Holy shit, it hurts. My skin is so raw it's weeping. I have cut back my food and my fluids because going to the bathroom is pure torture. Even peeing. Your pee is acidic. That on raw skin can make you cry. And it has. I go through all of this with a smile on my face. With my makeup done, and my hair blow dried and a cute outfit on. I crack jokes as my facade. I'm due a mother effing Oscar is what it is.
Someone in one of my IBD groups on Facebook had commented this weekend that a picture I posted showed me looking happy and healthy. It's all bullshit. Smoke and mirrors. Urban Decay concealer and some great highlighter. Here's me faking everything being swell while I'm in pain just sitting down.

Concealer, bronzer, highlighter and Norco= fake health. 

My dad was in town for Father's Day. I wasn't about to let my pain control his trip. We went to dinner. I smiled and took pictures on Father's Day while on the inside I was cringing and in pain. My head a fog of pain killers and muscle relaxers just to allow me to function at a basic level. Moving sends pain searing through my body. I reapply my lipgloss and smile and make a joke. It's such a game. It's such bullshit. I want my life back. I don't want to leave work early because I'm in pain. I freaking HATE it. And I'm skinny. I'm at the lowest end of a healthy weight for 5'3". A few days of pain and I drop 5-8 pounds because as it is I absorb nothing. But I look great. I'm so skinny. I'm so lucky. Oh yeah--- Soooooo lucky. :|  I can buy clothes in the girls department and I lost my tits. Yeah- I lucked the hell right out with the big ole IBD lottery. Ugh--- I'd trade all this crap for 40 pounds and a properly functioning body.
So my surgeon was out of town last week and I finally got in to see him today at 5.

Just a normal day. Waiting for more pain at the surgeon's. 

 I need to get my pouch scoped because he doesn't feel the CT AND the MRI were comprehensive enough to figure out what's going on. I'm in too much pain. Spasms won't stop. My pouch surgery was textbook and now to have all this post OP shit is ridiculous. My surgeon says to me tonight that all my issues are issues that are present with Crohn's. CROHN'S. No. I refuse to accept that until there is something to substantiate it. I was tested and retested and biopsied within an inch of my life and NOTHING ever pointed to Crohn's. My surgeon had my small intestines IN HIS HANDS on purpose last May to triple check. I got gutted and cut wide open instead of doing it laproscopically so that he could better check my small bowel before gutting me.
I just don't know. So I get to go have my pouch checked out at Baylor with my surgeon, his partner and some other superman colo-rectal guy so they can all use me as a science experiment and try to problem solve. Luckily, I don't have any modesty left whatsoever so 3 grown men scoping my ass is just another day for me.
It is days like today where I feel this tiny pull telling me to go back to my ileostomy. Yes...seriously. Where many feel ostomies are a death sentence, I would actually consider going back.
I'm emotionally exhausted. I'm physically shutting down some days. I don't sleep from pain. I feel like I've been fighting an internal war for 4 years. How do I hang on? How do I get up everyday and bother faking it and keep going. Wouldn't it be easier to stay in bed, screw wearing makeup and putting an outfit together. Wouldn't that be more reflective of "sick"?? Sure. But I know that's not me. IBD may be destroying my body but I try so hard to stop it from destroying who I am. I give up a lot as it is. I don't feel independent anymore. Well, I'm not. I went back to work to try to regain some of it and it is a daily battle every time I have to go in. That's not me. I keep trying to force myself back into a Lisa that isn't really there anymore. And I'm stubborn and just keep trying.  I rely on Mat so much. He went out on a whim yesterday and got a new truck. I want to do that. I'm so afraid I'm stuck in this dependent state forever because these issues won't end. I hate putting that on him too. It's not fair to him. I could go around and around. It won't change anything right now. I just need to face the reality head on and make the most of it. In the meantime, my Disability hearing is finally in August. Yeah, over a year after it was requested because I got denied 3 times because I should have had no problem working fulltime while I was hemorrhaging blood daily about 30 times a day. Yeah- sounds completely doable to be holding a job with that going on.
Ok, I'm ending on this because the pain meds are kicked in. My surgeon took me off work for two weeks while I get tested, scoped and so my skin can heal. He wants me basically doing nothing to try to keep the spasms at bay and help my skin heal. <Sigh>  Defective. I feel like a defective burden. I don't know how much more I can take.
Good night all....