#sickmomfail

Guilt. So much guilt comes with being chronically sick and in pain. This is the summer of #sickmomfail. Last summer I was recovering from surgery. This summer was supposed to be my "all in" summer. Nope. In pain. Stoned on pain meds. Laying on my bed playing word games on my phone. I can't imagine being sick like this prior to the digital age. I would have gone nuts. Daughter #1 loves to just GO... and I'm in park. As in parked on my sore ass. I feel like my chronic lameness makes her sad. I know she gets so disappointed. I hate it. I hate not being me. I feel trapped in a body that is defying me. I'm not eating much. I feel lethargic from meds. But let me back up a minute.
I left off needing to see my surgeon about my biopsy and scope results.  So I went last Wednesday and naturally there couldn't be good news. The basic rundown is as follows: I have Pouchitis in my JPouch. I have inflammation and ulceration of the 1cm that's left of my rectum, called the rectal cuff. So it's Cuffitis. My fistula that was opened is still healing and open and painful. And the cherry on top is that I have dysplasia somewhere up in there. By the time he got to that I was upset and didn't get the specifics of where. For those who don't know, dysplasia is abnormal cell growth. Often it is precancerous in nature so the area needs to be taken care of so it doesn't progress to cancer. For those that haven't been reading my blog, I had advanced cervical dysplasia over about 50% of my cervix in 2011 and had to have the area scraped away to prevent it from manifesting into cancer. So now I'm dealing with it somewhere else. Seriously..I have zero shame and modesty left. This must be how porn stars feel... nothing left to hide. So, now my surgeon wants to confer with some super specialist and double check the labs and maybe re-scope me and take new biopsies. HOW FUN!!! WoooooHoooooo! What a fan-fucking-tastic summer so far.
So, now I'm back on a steroid three times a day. This time Entocort. So far I don't notice much change other than the night sweats and being on edge 24/7. I'm used to being on Prednisone which kicks in fast so I know I'm being impatient. I'm also using a nightly suppository which is just a regular party in my ass. Yeah--- so painful, open wound ass and I need to put that through that. It SUCKS. Big time. It's hard too. Like plastic. So all you "I do anal stuff for sexy fun" people are OUT OF YOUR DAMN MINDS. Holy shit. Never.
I'm also still taking Norco for pain and Flagyl for the pouchitis. So, that's my day. Pill popping. Barely eating because it's just not worth it right now. It is truly a big struggle to pull myself together and be normal. I'm not succeeding. I feel useless. I am sad. I hate disappointing my kids. Lots of movies with Daughter #1. I feel so guilty not being 100%. I would love to run around. Can't swim because of the fistula healing. Can't ride bikes. Hurts to move a whole lot. Hurts to sit. The pain pills that normally knock me out at night are now fighting against the steroid induced night sweats. That's a lot of fun. :-/
My big outings have been a swim meet, fireworks on the 4th and the drive in movie. The last two I was parked in the back of Hub's truck trying to stay comfortable. Not an easy thing to do. So yeah. It's been tough. I need to find out where we go from here. I will have to be scoped again and they will need to surgically remove all the precancer cells and then monitor me. For now just trying to get rid of the pouchitis and treat the cuffitis that is causing me pain and issues. And I'm starving. I love food and this sucks. I had some rice yesterday and some marshmallows. I think that's it. But I had made a tomato cream sauce the night before and ate it and was in MISERY all that night into yesterday so that makes me pull back on eating. I knew acidic tomato would be bad, but I just wanted to EAT! It's really hard to cook and NOT eat what you made. It was yummy but it made me want to die for 6-12 hours later. NOT WORTH IT! But I'll do it again. It's hard just not eating what you like. Or cooking one thing and knowing you are eating something lame. It erases any motivation to make something. So at 4pm when I have no dinner plan, it sucks. I know all IBDers struggle with this. We just want something real and want what we want. If we feel ok we push the envelope and we suffer. I'm no exception. My diet is crap. Many fruits are bad. Most vegetables. I could live on potato chips and junk and be fine. One helping of something healthy and I'm in misery. I never thought I'd miss salad so much. And broccoli. It's ridiculous.
Enjoy your day everyone. Run and play with your kids. Or without your kids. Take advantage of being able to just 'Do'. When you can't it royally sucks.

Guilt. So much guilt comes with being chronically sick and in pain. This is the summer of #sickmomfail. Last summer I was recovering from surgery. This summer was supposed to be my "all in" summer. Nope. In pain. Stoned on pain meds. Laying on my bed playing word games on my phone. I can't imagine being sick like this prior to the digital age. I would have gone nuts. Daughter #1 loves to just GO... and I'm in park. As in parked on my sore ass. I feel like my chronic lameness makes her sad. I know she gets so disappointed. I hate it. I hate not being me. I feel trapped in a body that is defying me. I'm not eating much. I feel lethargic from meds. But let me back up a minute.
I left off needing to see my surgeon about my biopsy and scope results.  So I went last Wednesday and naturally there couldn't be good news. The basic rundown is as follows: I have Pouchitis in my JPouch. I have inflammation and ulceration of the 1cm that's left of my rectum, called the rectal cuff. So it's Cuffitis. My fistula that was opened is still healing and open and painful. And the cherry on top is that I have dysplasia somewhere up in there. By the time he got to that I was upset and didn't get the specifics of where. For those who don't know, dysplasia is abnormal cell growth. Often it is precancerous in nature so the area needs to be taken care of so it doesn't progress to cancer. For those that haven't been reading my blog, I had advanced cervical dysplasia over about 50% of my cervix in 2011 and had to have the area scraped away to prevent it from manifesting into cancer. So now I'm dealing with it somewhere else. Seriously..I have zero shame and modesty left. This must be how porn stars feel... nothing left to hide. So, now my surgeon wants to confer with some super specialist and double check the labs and maybe re-scope me and take new biopsies. HOW FUN!!! WoooooHoooooo! What a fan-fucking-tastic summer so far.
So, now I'm back on a steroid three times a day. This time Entocort. So far I don't notice much change other than the night sweats and being on edge 24/7. I'm used to being on Prednisone which kicks in fast so I know I'm being impatient. I'm also using a nightly suppository which is just a regular party in my ass. Yeah--- so painful, open wound ass and I need to put that through that. It SUCKS. Big time. It's hard too. Like plastic. So all you "I do anal stuff for sexy fun" people are OUT OF YOUR DAMN MINDS. Holy shit. Never.
I'm also still taking Norco for pain and Flagyl for the pouchitis. So, that's my day. Pill popping. Barely eating because it's just not worth it right now. It is truly a big struggle to pull myself together and be normal. I'm not succeeding. I feel useless. I am sad. I hate disappointing my kids. Lots of movies with Daughter #1. I feel so guilty not being 100%. I would love to run around. Can't swim because of the fistula healing. Can't ride bikes. Hurts to move a whole lot. Hurts to sit. The pain pills that normally knock me out at night are now fighting against the steroid induced night sweats. That's a lot of fun. :-/
My big outings have been a swim meet, fireworks on the 4th and the drive in movie. The last two I was parked in the back of Hub's truck trying to stay comfortable. Not an easy thing to do. So yeah. It's been tough. I need to find out where we go from here. I will have to be scoped again and they will need to surgically remove all the precancer cells and then monitor me. For now just trying to get rid of the pouchitis and treat the cuffitis that is causing me pain and issues. And I'm starving. I love food and this sucks. I had some rice yesterday and some marshmallows. I think that's it. But I had made a tomato cream sauce the night before and ate it and was in MISERY all that night into yesterday so that makes me pull back on eating. I knew acidic tomato would be bad, but I just wanted to EAT! It's really hard to cook and NOT eat what you made. It was yummy but it made me want to die for 6-12 hours later. NOT WORTH IT! But I'll do it again. It's hard just not eating what you like. Or cooking one thing and knowing you are eating something lame. It erases any motivation to make something. So at 4pm when I have no dinner plan, it sucks. I know all IBDers struggle with this. We just want something real and want what we want. If we feel ok we push the envelope and we suffer. I'm no exception. My diet is crap. Many fruits are bad. Most vegetables. I could live on potato chips and junk and be fine. One helping of something healthy and I'm in misery. I never thought I'd miss salad so much. And broccoli. It's ridiculous.
Enjoy your day everyone. Run and play with your kids. Or without your kids. Take advantage of being able to just 'Do'. When you can't it royally sucks.