Post #90. Suck it, IBD. Still.

I haven't written a blog post since October. I don't really have a very good reason for it. Mostly, I'm sick of myself and my issues and have nothing new to say. I'm in pain daily. In multiple spots. Abdominal. Rectal from fissures and hopefully not more cuffitis. It has been concluded that all my abdominal pain is from adhesions(bands of scar tissue) from being opened up a bazillion times. They can go in and remove them, but guess what?! It creates the risk of MORE adhesions!!! Woooohoooooo. What an awesome catch 22.

So I starting seeing pain management last week. I can't even believe I need to deal with this. I got some injections on Monday. So there's that. Needles jabbed an inch and a half into my incision scars with the hopes that it'll help the widespread pain. I'm doubtful. My pain is not superficial. It's deep. This is not incision pain spreading out. It's a nice effort to start but screw that shit. I hate when I KNOW because it's MY BODY but my lack of a medical degree means I have no idea. So there's that. It's pretty fun.

My surgeon is not one to just cut. I respect him for that. And he specifically won't just go in for adhesions, but he has told me he may break his rule for me. Which is sweet in a weird surgical, chronically ill kinda way. I actually looked at him when he said it and said, "awwww, you would?". Being sick skews how completely whacked something is. Like what normal person would think someone offering to reopen you midline, was sweet? Uhhhh no one. That would sound like torture. But eh, just another day.

I've been having serious self esteem and motivation issues. I'm just sad that this is what is STILL happening. I went back and read some old blogs recently. Especially the ones immediately after my colectomy. I cried. The optimism in those words is long gone. It almost sounds ridiculous. I really thought this would be an easy peasy fix. JPouches are common enough. Colectomies happen all the time. People move on and live life and are active and happy. And then there's me. Still with this bullshit. My colectomy anniversary is 3 years next month. Seriously WTF. I always knew I'd never be normal but I never imagined I'd still be fighting the pain daily for this long. It's not fair.
I barely eat because it's not worth the pain to do so. My days are clouded from meds. I can't get out of bed. If I have a 9am appointment it is nearly impossible for me to make that happen.
I suck. I'm useless. That's how I feel. My entire existence has become completely inconvenient to everyone around me. For me to be "normal" and get dressed and go out and do things requires a level of will power I can't explain in words. And then that outing wipes me out for 2 days. And when I say outing I mean a day I go grocery shopping and lunch. Going to brunch. Hell, I went to the zoo Saturday and it's Wednesday and I'm still wiped out. And a raging sore throat and body aches have started which is letting me know I over did it. BY WALKING AROUND THE ZOO.
My immune system sucks. I've been over this shit for 2 years. Everyday I have a mantra in my head, "Just get through today". Isn't that the most pathetic thing you've ever heard?! Just get through life. Everyday. I don't know what I'm getting through it for because saying that usually means there's something better after you get through it. I don't feel that anymore. I don't feel that "It'll all be worth it" feeling. It sucks.
This is life with IBD. Real life. Not some stupid Crohns and Colitis foundation ad of people looking all healthy and "managing" their IBD. It's such bullshit. I can't manage a shower much less manage a "normal" daily life. THINKING about doing things exhausts me. So when you see me and I'm put together and dressed and my face is on and I'm smiling, just know how much effort I am putting in to not see my pain. When I'm out or on vacation, know how much it took for me to make that happen. Not eating the day before. A lot of meds. Giving up the next few days. It's hard but I've become a pro. I don't want to be but apparently this is what I have to work with. I'm just tired of doing it but I can't exactly quit. It's like being stuck with some soul sucking job you fucking hate and resent having to go to every single day including unpaid overtime and that's just your lot in life. Suck it Ulcerative Colitis. Just suck it.

I haven't written a blog post since October. I don't really have a very good reason for it. Mostly, I'm sick of myself and my issues and have nothing new to say. I'm in pain daily. In multiple spots. Abdominal. Rectal from fissures and hopefully not more cuffitis. It has been concluded that all my abdominal pain is from adhesions(bands of scar tissue) from being opened up a bazillion times. They can go in and remove them, but guess what?! It creates the risk of MORE adhesions!!! Woooohoooooo. What an awesome catch 22.

So I starting seeing pain management last week. I can't even believe I need to deal with this. I got some injections on Monday. So there's that. Needles jabbed an inch and a half into my incision scars with the hopes that it'll help the widespread pain. I'm doubtful. My pain is not superficial. It's deep. This is not incision pain spreading out. It's a nice effort to start but screw that shit. I hate when I KNOW because it's MY BODY but my lack of a medical degree means I have no idea. So there's that. It's pretty fun.

My surgeon is not one to just cut. I respect him for that. And he specifically won't just go in for adhesions, but he has told me he may break his rule for me. Which is sweet in a weird surgical, chronically ill kinda way. I actually looked at him when he said it and said, "awwww, you would?". Being sick skews how completely whacked something is. Like what normal person would think someone offering to reopen you midline, was sweet? Uhhhh no one. That would sound like torture. But eh, just another day.

I've been having serious self esteem and motivation issues. I'm just sad that this is what is STILL happening. I went back and read some old blogs recently. Especially the ones immediately after my colectomy. I cried. The optimism in those words is long gone. It almost sounds ridiculous. I really thought this would be an easy peasy fix. JPouches are common enough. Colectomies happen all the time. People move on and live life and are active and happy. And then there's me. Still with this bullshit. My colectomy anniversary is 3 years next month. Seriously WTF. I always knew I'd never be normal but I never imagined I'd still be fighting the pain daily for this long. It's not fair.
I barely eat because it's not worth the pain to do so. My days are clouded from meds. I can't get out of bed. If I have a 9am appointment it is nearly impossible for me to make that happen.
I suck. I'm useless. That's how I feel. My entire existence has become completely inconvenient to everyone around me. For me to be "normal" and get dressed and go out and do things requires a level of will power I can't explain in words. And then that outing wipes me out for 2 days. And when I say outing I mean a day I go grocery shopping and lunch. Going to brunch. Hell, I went to the zoo Saturday and it's Wednesday and I'm still wiped out. And a raging sore throat and body aches have started which is letting me know I over did it. BY WALKING AROUND THE ZOO.
My immune system sucks. I've been over this shit for 2 years. Everyday I have a mantra in my head, "Just get through today". Isn't that the most pathetic thing you've ever heard?! Just get through life. Everyday. I don't know what I'm getting through it for because saying that usually means there's something better after you get through it. I don't feel that anymore. I don't feel that "It'll all be worth it" feeling. It sucks.
This is life with IBD. Real life. Not some stupid Crohns and Colitis foundation ad of people looking all healthy and "managing" their IBD. It's such bullshit. I can't manage a shower much less manage a "normal" daily life. THINKING about doing things exhausts me. So when you see me and I'm put together and dressed and my face is on and I'm smiling, just know how much effort I am putting in to not see my pain. When I'm out or on vacation, know how much it took for me to make that happen. Not eating the day before. A lot of meds. Giving up the next few days. It's hard but I've become a pro. I don't want to be but apparently this is what I have to work with. I'm just tired of doing it but I can't exactly quit. It's like being stuck with some soul sucking job you fucking hate and resent having to go to every single day including unpaid overtime and that's just your lot in life. Suck it Ulcerative Colitis. Just suck it.

I have purple hair and am not at my best.

Hello interweb friends. I hope everyone had a glorious end to their summer. Mine went by really fast even with recovery. It is now "fall" here in Texas at 80 degrees.
It's been way too long since I've written for various reasons I am too tired and too drained to recount here. For those that don't know me personally, my summer after surgery was a struggle, my trip was AMAZING with my family at the beach and school started with little fuss.

I have purple hair because, why not? If not now, when? So let's do this. 
I just had my 2 year anniversary of my original JPouch connection. So many mixed emotions and struggles continue to this day. Never having answers. Daily pain. Not feeling like I can plan or do what I want way too often and just continuous issues. Well, I am missing a major organ so my surprise is pretty naive. Life and your body functioning just can't work correctly missing something like a colon. My Jpouch is a slight replacement for it. The shittiest of substitutes and lacking functionality. It's annoying. I'm pissed. I'm tired. My pouchitis was/is back along with another fissure. So that would be approximately 3 months post op. Way too fast for that to have happened. Again. Considering my last ostomy was to rest my guts from chronic pouchitis. Discouraging isn't quite the word for any of it. In fact, I have nothing in my vocabulary arsenal to adequately describe my feelings to all you "normal" people.
I went into this blog post considering whether to express my positive "go get 'em" face or the real shit I have been struggling with the last 6 months or so. Not to say everything was great prior, but the last 6 months have just been eating at me. In terms of therapy, getting to be with my parents and siblings and all the nonsense that goes with our families was above and beyond anything else I could have tried. That week went too fast. I think I needed two. If I had to move back to the beach and breath the salt air daily it would be so great. I felt so much better too. Salt air fixes everything. And a giant, insane Italian family.
Anyway, I feel like I'm in this shitty, dark place in my head. I don't like myself much. After being out here almost 5 years, I have a handful of acquaintances who are great and I see now and then but don't have that support system of people that everyone needs. I don't have girls I go out with or call to whine or complain to or go get my nails done with or shop with. I don't have a hobby bc honestly after the time I put into school, my pain, my kids, the house, a hobby is more energy than I can spend.  I don't even know who I am anymore many times. I say "me" but in my head I'm referring to this pre-sick person not the current person. The current me is no where near the me in my head that I refer to in a delusion. It's maddening. It makes me sad. Illness aside, I went from always jumping at opportunity and being busy living, to not living my life. To limiting my experiences. And I hate it to my core.
I will never get my sick time back. I feel like I need to double down on time now. Make up for time in the hossie, time recovering from surgery and time where pain just wore me out. There's way too much I want to do. Too many places to see and things to experience. Laughter to be had and people to meet. I don't know. I feel like my life has been in limbo for quite a while. It was one thing being really sick, or in the hospital or with surgery recovery, but now it's just "chronic every single day, I can't win" pain and issues that impact my life. The mental exhaustion from the realization of how long it's been going on, what things I've missed or what I avoid, is huge. 

I don't mean to be a Debbie downer but it is exhausting trying to be "ok" all the time. To smile and make small talk when you want to lay in bed and wait for five minutes of feeling ok. It just sucks the life out of you. So there you have it. I really would love to always be upbeat and positive and looking forward to things but in all honesty that's rare and I'm miserable and life can suck it, big time. In the best way possible of course. I see my surgeon Thursday to tell him things still suck. Trying to live while in pain is the biggest suckfest. I think about going to Europe one day and it's depressing because of all the food I will not enjoy because if I do my trip will be ruined.  I swear there are days I could scream. But I'm too damn tired. 

Hello interweb friends. I hope everyone had a glorious end to their summer. Mine went by really fast even with recovery. It is now "fall" here in Texas at 80 degrees.
It's been way too long since I've written for various reasons I am too tired and too drained to recount here. For those that don't know me personally, my summer after surgery was a struggle, my trip was AMAZING with my family at the beach and school started with little fuss.

I have purple hair because, why not? If not now, when? So let's do this. 
I just had my 2 year anniversary of my original JPouch connection. So many mixed emotions and struggles continue to this day. Never having answers. Daily pain. Not feeling like I can plan or do what I want way too often and just continuous issues. Well, I am missing a major organ so my surprise is pretty naive. Life and your body functioning just can't work correctly missing something like a colon. My Jpouch is a slight replacement for it. The shittiest of substitutes and lacking functionality. It's annoying. I'm pissed. I'm tired. My pouchitis was/is back along with another fissure. So that would be approximately 3 months post op. Way too fast for that to have happened. Again. Considering my last ostomy was to rest my guts from chronic pouchitis. Discouraging isn't quite the word for any of it. In fact, I have nothing in my vocabulary arsenal to adequately describe my feelings to all you "normal" people.
I went into this blog post considering whether to express my positive "go get 'em" face or the real shit I have been struggling with the last 6 months or so. Not to say everything was great prior, but the last 6 months have just been eating at me. In terms of therapy, getting to be with my parents and siblings and all the nonsense that goes with our families was above and beyond anything else I could have tried. That week went too fast. I think I needed two. If I had to move back to the beach and breath the salt air daily it would be so great. I felt so much better too. Salt air fixes everything. And a giant, insane Italian family.
Anyway, I feel like I'm in this shitty, dark place in my head. I don't like myself much. After being out here almost 5 years, I have a handful of acquaintances who are great and I see now and then but don't have that support system of people that everyone needs. I don't have girls I go out with or call to whine or complain to or go get my nails done with or shop with. I don't have a hobby bc honestly after the time I put into school, my pain, my kids, the house, a hobby is more energy than I can spend.  I don't even know who I am anymore many times. I say "me" but in my head I'm referring to this pre-sick person not the current person. The current me is no where near the me in my head that I refer to in a delusion. It's maddening. It makes me sad. Illness aside, I went from always jumping at opportunity and being busy living, to not living my life. To limiting my experiences. And I hate it to my core.
I will never get my sick time back. I feel like I need to double down on time now. Make up for time in the hossie, time recovering from surgery and time where pain just wore me out. There's way too much I want to do. Too many places to see and things to experience. Laughter to be had and people to meet. I don't know. I feel like my life has been in limbo for quite a while. It was one thing being really sick, or in the hospital or with surgery recovery, but now it's just "chronic every single day, I can't win" pain and issues that impact my life. The mental exhaustion from the realization of how long it's been going on, what things I've missed or what I avoid, is huge. 

I don't mean to be a Debbie downer but it is exhausting trying to be "ok" all the time. To smile and make small talk when you want to lay in bed and wait for five minutes of feeling ok. It just sucks the life out of you. So there you have it. I really would love to always be upbeat and positive and looking forward to things but in all honesty that's rare and I'm miserable and life can suck it, big time. In the best way possible of course. I see my surgeon Thursday to tell him things still suck. Trying to live while in pain is the biggest suckfest. I think about going to Europe one day and it's depressing because of all the food I will not enjoy because if I do my trip will be ruined.  I swear there are days I could scream. But I'm too damn tired. 

I had a very disgusting night.

I'm giving everyone fair warning. I'm about to talk about some gross shit. As opposed to not gross shit I guess. Whatever.

It's been a month since I've written. The one fabulous thing I did was get LASIK!! OMG! So freakin' great. My eyes weren't bad to begin with but to me they were. I was about 20/40 and -2.50 in contacts. My last checkup was 20/10!!! It is unreal to wake up and be able to see, and shower and not be blind or me to think I'm going to get some bacterial infection every time I would shower with contacts in. Yes, I know, but it happens. So now I can SEE!! I have a part of my body that isn't failing and causing me issues. I don't even know what to do about it. Wow. And daughter #2 broke my glasses the day after surgery. And I didn't even care!! =)


*** Grossness beginning***

So aside from my spectacular vision,  I have had the usual nonsense with living with a temporary ileostomy. Trying to figure out how to slow my output so it's not nasty water pouring out of me but not so thick that it'll cause issues. Yeah, I haven't found the right fix yet unless you count eating potato chips everyday. No kidding. The lomotil I have as a Rx doesn't quite do it. The Imodium is a joke. But if I eat chips everyday I am the closest thing to comfortable as I can get. Sleeping with an ostomy bag full of liquid is impossible. It sloshes around. It weighs 2lbs. No joke. It is truly disgusting and you are aware of it for every single second you are trying to "relax" and get some sleep. It doesn't go together well, hence I'm a #tiredhag.
Traveling with an ostomy is a nightmare for me. We went away for spring break for a week and I have to plan and think about so many things with an ostomy. I have yet to find wafers that don't blow and leak constantly so needing to travel and carry with me enough supplies by guessing what I could possibly need is a lot. You can't get anything at a drugstore. So I get paranoid and half a suitcase is ostomy supplies. I came close to not having enough this time. I started to panic over the weekend and came up with a plan to contact an ostomy nurse at a hospital in town. It would have been my only option in a pinch.

My ostomy was at the forefront of my mind every minute I was away. At the beach(especially), while we spent the day at a theme park, when we went to dinner at my parent's friend's house. Dealing with an ostomy incident away from my house makes me crazy. It makes me neurotic and upset and just so AWARE that I have issues. I love the beach. I could park my ass in the sand for 5 days straight and be fine. It's not the same dealing with this. It's hard to handle a wafer blowout in the sand. My enjoyment level is down. I feel restricted in my life. I know so many of my IBDer friends have permanent ostomies that they chose, or in some cases, had no choice. And I commend them for their day to day. I am amazed by those that scuba dive, run marathons, go camping etc... I can't picture myself doing any of that. Not in my condition. Not with the skin issues I have, the wafer issues I have and the output I have. Some days I'm afraid to run to the store because my wafers have been leaking nonstop.
So vacation was fun. I LOVE going away but at the same time felt the impact of what I have going on with an ostomy. We went to Universal and I had an explosion before we got into the park. That doesn't set my confidence level very high for the day. I hate that. But I enjoyed Butter Beer in the World of Harry Potter. ;)

So we get to the last few days. My rectal spasms are back and are so uncomfortable. They bring me to tears and it takes A LOT of pain to bring me to tears. I've built up a pretty high tolerance for pain over the years. My skin is raw. It's weeping, it's bleeding. My output is water. (Keep in mind "they" say a good output is mush like oatmeal. Yeah, right. Maybe about an hour every few days if I eat chips consistantly.) So I've been going through wafers like crazy. I try to hold off changing them very soon even if I know I have fluid that has leaked under and is eating my skin. The tradeoff is my skin getting eaten off in one small spot, or my skin getting ripped off from the wax in a larger area.(The wafer is wax and it melts onto your skin to seal it. They are meant to stay on easily up to 5 days so getting one off after a few hours is horrible.) It all sounds so fun doesn't it?? Wooooo-friggon-Hooooo!
All of these supplies are VERY expensive so making them last is important. I spend way too much money on all these supplies. So sometimes I suffer through the pain of a leaking wafer just to get another day out of it. I know that sounds nuts but I've become so accustomed to some sort of pain or discomfort that it isn't a big deal anymore.
Well today was just the suck of the suck. Burning skin. Spasms. Water output nonstop. Those things and changing a wafer DO NOT MIX. On a good day, once I get the old wafer off I can get cleaned, prepped and a new wafer on in 60 seconds. On a day like today I have no chance against the power of the small intestine's peristalsis. It won't stop. And with it being all liquid it makes it impossible to get the area dry before putting the new wafer on. So tonight with my skin burning so bad I couldn't take anymore, I managed to peel the wafer off, taking some skin with it. Here's a nice visual.

 So my skin's bleeding. I'm trying to get everything ready with one hand and deal with my skin with the other. Well, then the explosions started. I am not kidding when I say the force of the smooth muscle in your guts is insane. You will never see it unless you are *lucky* enough to have part of it sticking out of your abdomen. Mind you, you can't feel it doing it. It's creepy. There are no nerve endings. So I don't know its leaking until it hits skin or I see it. Tonight I was lucky enough to have that pain in the ass spray 2 feet across the bathroom. More than once. Absolutely amazing and completely disgusting at the same time. There is nothing to do to stop it. It was everywhere. Like a gross horror movie.
So after showering, barely getting the new wafer on before it sprayed again, I had to bleach the bathroom. I'm living the dream. Some days, like today, it is so apparent that this is my life.
 I will never NOT have issues. I know that sounds so negative but even getting reversed to my JPouch will not be fool proof. If it was I wouldn't have this ostomy again. It's a crap shoot, so to speak, and some days it feels like I have a short term issue and I'm just waiting for it to resolve itself. But the truth is, I have an autoimmune disease, I'm missing a major organ that you need to live well and be healthy. NOTHING will replace my colon or do it's job. And most people don't realize how important digestion is to their health. They don't know the impact of IBD. I know I've said in the past but, I've had people ask me very confused HOW I was anemic. Shitting blood in ridiculous amounts for months straight isn't something that occurs to people and even if it did they don't really get how much damage it causes.

But to all my healthy readers, how horrible do you feel from one night of diarrhea? From a week of the flu? Run down. Weak. Fatigued. Hurting internally. Imagine that every day of your life. With blood. With abdominal pain that sears through you like a hot poker. It's devastating. It's debilitating. It can be embarrassing. I'm generally a pretty confident person, but I will say my ostomy reduces that. My weak, fatigued body reduces that. My poor body image from weight fluctuations reduces that. And for me that is huge. SO when I have to fight with an ostomy, and have it halt my life the way it can, I know pushing to get reversed is what I need. I can be in pain anywhere. I can deal with that. I've done it. When an ileostomy wafer blows, and you have a mess and you are in the car, in the mall, at the beach, in a plane, that's what is halting and what is beyond my scope of handling.

I've been dreaming of my reversal. I'm so miserable like this. Hoping to get scoped in April. If it looks good, I want my reversal as soon as my finals are done. I'll leave school and drive to the O.R.
Sorry for my long windedness. Sorry for being Josie Grossie. I guess sometimes I glaze over the reality and how much it can suck and I just needed to put this out there. I smile and live my life and TRY not to let this whole mess of my life hold me back. I think I do pretty well, but tonight just hit me too hard. When you have a moment when you are alone and feel humiliated to yourself, you know that's something big.
Live well everyone. Be well. Love your guts and don't take your health for granted. Don't take having nothing hindering you for granted. Thanks for reading. XO.

I'm giving everyone fair warning. I'm about to talk about some gross shit. As opposed to not gross shit I guess. Whatever.

It's been a month since I've written. The one fabulous thing I did was get LASIK!! OMG! So freakin' great. My eyes weren't bad to begin with but to me they were. I was about 20/40 and -2.50 in contacts. My last checkup was 20/10!!! It is unreal to wake up and be able to see, and shower and not be blind or me to think I'm going to get some bacterial infection every time I would shower with contacts in. Yes, I know, but it happens. So now I can SEE!! I have a part of my body that isn't failing and causing me issues. I don't even know what to do about it. Wow. And daughter #2 broke my glasses the day after surgery. And I didn't even care!! =)


*** Grossness beginning***

So aside from my spectacular vision,  I have had the usual nonsense with living with a temporary ileostomy. Trying to figure out how to slow my output so it's not nasty water pouring out of me but not so thick that it'll cause issues. Yeah, I haven't found the right fix yet unless you count eating potato chips everyday. No kidding. The lomotil I have as a Rx doesn't quite do it. The Imodium is a joke. But if I eat chips everyday I am the closest thing to comfortable as I can get. Sleeping with an ostomy bag full of liquid is impossible. It sloshes around. It weighs 2lbs. No joke. It is truly disgusting and you are aware of it for every single second you are trying to "relax" and get some sleep. It doesn't go together well, hence I'm a #tiredhag.
Traveling with an ostomy is a nightmare for me. We went away for spring break for a week and I have to plan and think about so many things with an ostomy. I have yet to find wafers that don't blow and leak constantly so needing to travel and carry with me enough supplies by guessing what I could possibly need is a lot. You can't get anything at a drugstore. So I get paranoid and half a suitcase is ostomy supplies. I came close to not having enough this time. I started to panic over the weekend and came up with a plan to contact an ostomy nurse at a hospital in town. It would have been my only option in a pinch.

My ostomy was at the forefront of my mind every minute I was away. At the beach(especially), while we spent the day at a theme park, when we went to dinner at my parent's friend's house. Dealing with an ostomy incident away from my house makes me crazy. It makes me neurotic and upset and just so AWARE that I have issues. I love the beach. I could park my ass in the sand for 5 days straight and be fine. It's not the same dealing with this. It's hard to handle a wafer blowout in the sand. My enjoyment level is down. I feel restricted in my life. I know so many of my IBDer friends have permanent ostomies that they chose, or in some cases, had no choice. And I commend them for their day to day. I am amazed by those that scuba dive, run marathons, go camping etc... I can't picture myself doing any of that. Not in my condition. Not with the skin issues I have, the wafer issues I have and the output I have. Some days I'm afraid to run to the store because my wafers have been leaking nonstop.
So vacation was fun. I LOVE going away but at the same time felt the impact of what I have going on with an ostomy. We went to Universal and I had an explosion before we got into the park. That doesn't set my confidence level very high for the day. I hate that. But I enjoyed Butter Beer in the World of Harry Potter. ;)

So we get to the last few days. My rectal spasms are back and are so uncomfortable. They bring me to tears and it takes A LOT of pain to bring me to tears. I've built up a pretty high tolerance for pain over the years. My skin is raw. It's weeping, it's bleeding. My output is water. (Keep in mind "they" say a good output is mush like oatmeal. Yeah, right. Maybe about an hour every few days if I eat chips consistantly.) So I've been going through wafers like crazy. I try to hold off changing them very soon even if I know I have fluid that has leaked under and is eating my skin. The tradeoff is my skin getting eaten off in one small spot, or my skin getting ripped off from the wax in a larger area.(The wafer is wax and it melts onto your skin to seal it. They are meant to stay on easily up to 5 days so getting one off after a few hours is horrible.) It all sounds so fun doesn't it?? Wooooo-friggon-Hooooo!
All of these supplies are VERY expensive so making them last is important. I spend way too much money on all these supplies. So sometimes I suffer through the pain of a leaking wafer just to get another day out of it. I know that sounds nuts but I've become so accustomed to some sort of pain or discomfort that it isn't a big deal anymore.
Well today was just the suck of the suck. Burning skin. Spasms. Water output nonstop. Those things and changing a wafer DO NOT MIX. On a good day, once I get the old wafer off I can get cleaned, prepped and a new wafer on in 60 seconds. On a day like today I have no chance against the power of the small intestine's peristalsis. It won't stop. And with it being all liquid it makes it impossible to get the area dry before putting the new wafer on. So tonight with my skin burning so bad I couldn't take anymore, I managed to peel the wafer off, taking some skin with it. Here's a nice visual.

 So my skin's bleeding. I'm trying to get everything ready with one hand and deal with my skin with the other. Well, then the explosions started. I am not kidding when I say the force of the smooth muscle in your guts is insane. You will never see it unless you are *lucky* enough to have part of it sticking out of your abdomen. Mind you, you can't feel it doing it. It's creepy. There are no nerve endings. So I don't know its leaking until it hits skin or I see it. Tonight I was lucky enough to have that pain in the ass spray 2 feet across the bathroom. More than once. Absolutely amazing and completely disgusting at the same time. There is nothing to do to stop it. It was everywhere. Like a gross horror movie.
So after showering, barely getting the new wafer on before it sprayed again, I had to bleach the bathroom. I'm living the dream. Some days, like today, it is so apparent that this is my life.
 I will never NOT have issues. I know that sounds so negative but even getting reversed to my JPouch will not be fool proof. If it was I wouldn't have this ostomy again. It's a crap shoot, so to speak, and some days it feels like I have a short term issue and I'm just waiting for it to resolve itself. But the truth is, I have an autoimmune disease, I'm missing a major organ that you need to live well and be healthy. NOTHING will replace my colon or do it's job. And most people don't realize how important digestion is to their health. They don't know the impact of IBD. I know I've said in the past but, I've had people ask me very confused HOW I was anemic. Shitting blood in ridiculous amounts for months straight isn't something that occurs to people and even if it did they don't really get how much damage it causes.

But to all my healthy readers, how horrible do you feel from one night of diarrhea? From a week of the flu? Run down. Weak. Fatigued. Hurting internally. Imagine that every day of your life. With blood. With abdominal pain that sears through you like a hot poker. It's devastating. It's debilitating. It can be embarrassing. I'm generally a pretty confident person, but I will say my ostomy reduces that. My weak, fatigued body reduces that. My poor body image from weight fluctuations reduces that. And for me that is huge. SO when I have to fight with an ostomy, and have it halt my life the way it can, I know pushing to get reversed is what I need. I can be in pain anywhere. I can deal with that. I've done it. When an ileostomy wafer blows, and you have a mess and you are in the car, in the mall, at the beach, in a plane, that's what is halting and what is beyond my scope of handling.

I've been dreaming of my reversal. I'm so miserable like this. Hoping to get scoped in April. If it looks good, I want my reversal as soon as my finals are done. I'll leave school and drive to the O.R.
Sorry for my long windedness. Sorry for being Josie Grossie. I guess sometimes I glaze over the reality and how much it can suck and I just needed to put this out there. I smile and live my life and TRY not to let this whole mess of my life hold me back. I think I do pretty well, but tonight just hit me too hard. When you have a moment when you are alone and feel humiliated to yourself, you know that's something big.
Live well everyone. Be well. Love your guts and don't take your health for granted. Don't take having nothing hindering you for granted. Thanks for reading. XO.

Deja vu all over again.

It's been a few weeks since I wrote. I have been hesitating to write until I figured out everything with my surgeries and could just do one post. It is also Crohn's and Colitis Awareness week this week and I've been blasting Facebook with posts nonstop with facts and articles and pictures.
I am a few days out from another surgery. Monday at 1030a I will be having an O.R party with not one, but TWO surgeons. Hey, when I decide to do something, I do it big. So my OB/Gyn will be there to take out my girly bits that will no longer be baking anything and are not faring well with all my GI and autoimmune issues. If you've been following, my immunosuppressants have caused advanced precancer cells to form faster than normal and something has caused my left fallopian tube to blow up like a sausage. So that's fun. You don't think about the relationship all your organs have with each other until one is missing. They are all millimeters away, support each other and share connective tissue. Take something away and that change in anatomy and that void causes things to shift, no longer sit in the same position and can cause issues. For many women, their uterus' tip dramatically post colectomy because that support is no longer there. That can then lead to horrible periods with extreme pain and blood loss. So all things considered, it's coming out. If they would take my spleen and gall bladder I'd let them do that too. But they won't. =(

So on Monday, my Colorectal will open me up and separate everything from my guts and Jpouch then my GYN will take out all my cash and prizes, leaving my ovaries so I don't turn into a menopausal maniac. Although, hot flashes would be welcome as I am always freezing. ;-)
After she's done, my Colorectal is coming back to give me another temporary loop ileostomy. I'm not really happy about it because the goal was always to have a Jpouch but my chronic pouchitis has progressively gotten worse and is antibiotic resistant plus the cuffitis causing pain and bleeding has gotten to be too much. My pouch needs to rest and heal and it just can't while I have all my plumbing hooked up. As long as I have that 2cm of tissue left I am prone to flares. So essentially I'm having a UC flare in 2cm of what's left of my colon. And my mouth is full of canker sores again so that's pretty typical of my colitis flares. Not fun right now for me. Not at all.
So Monday will be a little tag team surgical party. I know how to be sick people. I do it UP!!!!! On a positive, the weather is downright freezing so I'll be nice and stoned in the Hossie.
My surgeon is hopefully going to go in through my old ostomy scar. It worked ok, I wish it had been a bit lower but oh well. Needless to say, the ostomy nurses at Pre Op marked me. Over my scar. Phew. Good thing. Now my surgeon will know where to go in! :-/

If you have time, check out all the stuff online regarding #IBDawarenessweek. There is a lot of info out there and awareness=understanding. There is a lot on FB, twitter and Instagram. Tomorrow is the last day so it's been nice timing for me to reflect on what I've been through and how my struggle continues. I can't help but wonder at what point will I feel normal. Not have doctor appointments be every 6 weeks. Not have a bathroom drawer full of meds and topicals. Not spend hundreds of dollars on Rx copays. Not have to choose between my pain and pain pills because I have to drive, or do homework or be alone with my kids. Not have guilt because I'm a sick mom. Not look like shit because I'm a #tiredhag. Not have my hair fall out because my nutritional absorption sucks. Not be anemic. I could go on and on.
All I can think going into Monday is that this is what's going to work. I'm not nervous because being cut open doesn't phase me anymore, but I'm upset. I'm upset I have to go through an ostomy adjustment AGAIN. Mentally it will be easier this time, but physically it will still suck. And how many times can I get cut open. I was lucky that my scars healed so well, but there's no telling what the rehealing will do to them. FrankenBelly part deux. My weight will fluctuate again. I may be chronically dehydrated again and almost be blacking out every day. Plus, there are no guarantees. I could get reversed in a few months and all the pouchitis and cuffitis could come back. And then it was for nothing. And we don't have a plan if that were to happen. I refused to discuss anything further than this surgery and letting my guts heal.
I planned on spending this weekend doing last minute holiday stuff before I went into the Hospital but we got hit with nasty weather so there won't be much driving going on. I really need a pedi. And a bang trim. I can't get admitted looking all crazy!!!!
Ok everyone...I will be back post Op. I'll easily be in 5 days and I'm sure I'll have lots to share when I get out. Have a great weekend everybody! Thanks for reading!

It's been a few weeks since I wrote. I have been hesitating to write until I figured out everything with my surgeries and could just do one post. It is also Crohn's and Colitis Awareness week this week and I've been blasting Facebook with posts nonstop with facts and articles and pictures.
I am a few days out from another surgery. Monday at 1030a I will be having an O.R party with not one, but TWO surgeons. Hey, when I decide to do something, I do it big. So my OB/Gyn will be there to take out my girly bits that will no longer be baking anything and are not faring well with all my GI and autoimmune issues. If you've been following, my immunosuppressants have caused advanced precancer cells to form faster than normal and something has caused my left fallopian tube to blow up like a sausage. So that's fun. You don't think about the relationship all your organs have with each other until one is missing. They are all millimeters away, support each other and share connective tissue. Take something away and that change in anatomy and that void causes things to shift, no longer sit in the same position and can cause issues. For many women, their uterus' tip dramatically post colectomy because that support is no longer there. That can then lead to horrible periods with extreme pain and blood loss. So all things considered, it's coming out. If they would take my spleen and gall bladder I'd let them do that too. But they won't. =(

So on Monday, my Colorectal will open me up and separate everything from my guts and Jpouch then my GYN will take out all my cash and prizes, leaving my ovaries so I don't turn into a menopausal maniac. Although, hot flashes would be welcome as I am always freezing. ;-)
After she's done, my Colorectal is coming back to give me another temporary loop ileostomy. I'm not really happy about it because the goal was always to have a Jpouch but my chronic pouchitis has progressively gotten worse and is antibiotic resistant plus the cuffitis causing pain and bleeding has gotten to be too much. My pouch needs to rest and heal and it just can't while I have all my plumbing hooked up. As long as I have that 2cm of tissue left I am prone to flares. So essentially I'm having a UC flare in 2cm of what's left of my colon. And my mouth is full of canker sores again so that's pretty typical of my colitis flares. Not fun right now for me. Not at all.
So Monday will be a little tag team surgical party. I know how to be sick people. I do it UP!!!!! On a positive, the weather is downright freezing so I'll be nice and stoned in the Hossie.
My surgeon is hopefully going to go in through my old ostomy scar. It worked ok, I wish it had been a bit lower but oh well. Needless to say, the ostomy nurses at Pre Op marked me. Over my scar. Phew. Good thing. Now my surgeon will know where to go in! :-/

If you have time, check out all the stuff online regarding #IBDawarenessweek. There is a lot of info out there and awareness=understanding. There is a lot on FB, twitter and Instagram. Tomorrow is the last day so it's been nice timing for me to reflect on what I've been through and how my struggle continues. I can't help but wonder at what point will I feel normal. Not have doctor appointments be every 6 weeks. Not have a bathroom drawer full of meds and topicals. Not spend hundreds of dollars on Rx copays. Not have to choose between my pain and pain pills because I have to drive, or do homework or be alone with my kids. Not have guilt because I'm a sick mom. Not look like shit because I'm a #tiredhag. Not have my hair fall out because my nutritional absorption sucks. Not be anemic. I could go on and on.
All I can think going into Monday is that this is what's going to work. I'm not nervous because being cut open doesn't phase me anymore, but I'm upset. I'm upset I have to go through an ostomy adjustment AGAIN. Mentally it will be easier this time, but physically it will still suck. And how many times can I get cut open. I was lucky that my scars healed so well, but there's no telling what the rehealing will do to them. FrankenBelly part deux. My weight will fluctuate again. I may be chronically dehydrated again and almost be blacking out every day. Plus, there are no guarantees. I could get reversed in a few months and all the pouchitis and cuffitis could come back. And then it was for nothing. And we don't have a plan if that were to happen. I refused to discuss anything further than this surgery and letting my guts heal.
I planned on spending this weekend doing last minute holiday stuff before I went into the Hospital but we got hit with nasty weather so there won't be much driving going on. I really need a pedi. And a bang trim. I can't get admitted looking all crazy!!!!
Ok everyone...I will be back post Op. I'll easily be in 5 days and I'm sure I'll have lots to share when I get out. Have a great weekend everybody! Thanks for reading!

Thankful November

There seems to be a thing going around on social media where every day someone writes something they are thankful for this month. The idea is great. Truly it is. I don't have the dedication or attention span to do something every single day like that. I tried the October photo challenge on Instagram and failed miserably. Day 5. Oh, Day 17? Ok.
I will say this for this post. I am thankful for a lot. Despite the shitty hand I've been dealt and continue to get dealt I have some very wonderful things going on. There are so many days it is hard to see them through the fog of pain, the reality of illness and doctor's appointments and focusing on the negative. I'm sick of being tired and in pain. I'm sick of not going to beautiful places and traveling. I miss the salt air. I actually miss working out. I hate running one errand and being wiped out for an entire day. Then there comes a day that pulls the veil and makes everything feel so wonderful and in that moment, I forget I have anything to bitch about to begin with.
As much as I'm thankful that I had many years without so much as a sprained ankle, migraine etc... the last few years have definitely made up for it. So I'm thankful for a pain-free childhood and lived my 20s like I had to burn myself out on purpose.
I have my supportive husband who puts up with all this drama, and me being crabby and in pain, and not fun on many occasions. We don't go on vacation because I suck. Our outings are short lived. I'm pretty useless with heavy lifting situations and I'm usually in a drug induced coma at night if Daughter #2 wakes up. I have two healthy, beautiful, perfect girls. They are goofy and crack me up. I have a great family that I don't see nearly enough because we are scattered all over the country. I have childhood friends that I will always have a bond with and no matter how much time or distance, I know they will always be there.
Since moving to Texas I've met some really great people. I have friends I've met through my kids and through my Husband and I love those couple of gals. They know who they are. I enjoy the sunshine almost everyday, and Daughter #1 loves her school and all her friends. If this state wasn't run by a bunch of conservative, Republican douchebags and was on the ocean it would be perfect.
Specifically, today I am thankful for the internet and my IBD struggle. Yes. Thankful. Friday I got to meet up with a fellow gutsy girl that I met online through a support page. We slowly formed a friendship and we came to realize some similar interests outside of our guts.
Both of us being JFK nuts was one of our common threads. We met to see the movie "Parkland" and seriously it couldn't have been a better way to transition to "real life" friendship. It was like we'd been friends for years. We went to lunch and we probably could have sat there for 3 hours shooting the shit about whatever. And yes, we DID talk about our issues, but the best part is we didn't HAVE to. In fact we talked about that at the very end. After lunch, she left and I wandered around some shops killing time before a doctor's appointment and I realized, at one point, I felt really light. I just felt GOOD. I mean, I was still in pain and what not but I felt this weird sense of completeness I haven't felt in a while. Then it struck me that this was someone that understood me on more levels than anyone I'd met or known in a long time. There wasn't just the our-kids-go-to-school-connection, or the IBD connection, or the our-husbands-know-each-other-connection. It was really that sweet spot of both of us having this illness that brought us together and yet, if that illness disappeared we'd still be cool. It was almost as if you have this friend and then you both get diagnosed with the same thing so you just "get it". But you can still just be because you each understand so you don't need to explain it. I don't know. I hope that makes sense. Whatever I'm saying is, I'm thankful for my IBD and the internet for bringing me to this point where I have this friend I never would have known otherwise. She's not the first "friend" I have now because of my illness, but she's the first I got to meet up with. I had a pretty shitty couple of days around that pocket of a couple of hours, but somehow it wasn't so bad. I won't even get into those details right now. Thanks, Casey. Glad to now really know you in real life, so when I say "my friend" it doesn't just mean a name or face in my laptop. So I'm thankful. =) Have a great day everyone. Happy Birthday to the USMC today and a big thanks to all the Veterans tomorrow.

There seems to be a thing going around on social media where every day someone writes something they are thankful for this month. The idea is great. Truly it is. I don't have the dedication or attention span to do something every single day like that. I tried the October photo challenge on Instagram and failed miserably. Day 5. Oh, Day 17? Ok.
I will say this for this post. I am thankful for a lot. Despite the shitty hand I've been dealt and continue to get dealt I have some very wonderful things going on. There are so many days it is hard to see them through the fog of pain, the reality of illness and doctor's appointments and focusing on the negative. I'm sick of being tired and in pain. I'm sick of not going to beautiful places and traveling. I miss the salt air. I actually miss working out. I hate running one errand and being wiped out for an entire day. Then there comes a day that pulls the veil and makes everything feel so wonderful and in that moment, I forget I have anything to bitch about to begin with.
As much as I'm thankful that I had many years without so much as a sprained ankle, migraine etc... the last few years have definitely made up for it. So I'm thankful for a pain-free childhood and lived my 20s like I had to burn myself out on purpose.
I have my supportive husband who puts up with all this drama, and me being crabby and in pain, and not fun on many occasions. We don't go on vacation because I suck. Our outings are short lived. I'm pretty useless with heavy lifting situations and I'm usually in a drug induced coma at night if Daughter #2 wakes up. I have two healthy, beautiful, perfect girls. They are goofy and crack me up. I have a great family that I don't see nearly enough because we are scattered all over the country. I have childhood friends that I will always have a bond with and no matter how much time or distance, I know they will always be there.
Since moving to Texas I've met some really great people. I have friends I've met through my kids and through my Husband and I love those couple of gals. They know who they are. I enjoy the sunshine almost everyday, and Daughter #1 loves her school and all her friends. If this state wasn't run by a bunch of conservative, Republican douchebags and was on the ocean it would be perfect.
Specifically, today I am thankful for the internet and my IBD struggle. Yes. Thankful. Friday I got to meet up with a fellow gutsy girl that I met online through a support page. We slowly formed a friendship and we came to realize some similar interests outside of our guts.
Both of us being JFK nuts was one of our common threads. We met to see the movie "Parkland" and seriously it couldn't have been a better way to transition to "real life" friendship. It was like we'd been friends for years. We went to lunch and we probably could have sat there for 3 hours shooting the shit about whatever. And yes, we DID talk about our issues, but the best part is we didn't HAVE to. In fact we talked about that at the very end. After lunch, she left and I wandered around some shops killing time before a doctor's appointment and I realized, at one point, I felt really light. I just felt GOOD. I mean, I was still in pain and what not but I felt this weird sense of completeness I haven't felt in a while. Then it struck me that this was someone that understood me on more levels than anyone I'd met or known in a long time. There wasn't just the our-kids-go-to-school-connection, or the IBD connection, or the our-husbands-know-each-other-connection. It was really that sweet spot of both of us having this illness that brought us together and yet, if that illness disappeared we'd still be cool. It was almost as if you have this friend and then you both get diagnosed with the same thing so you just "get it". But you can still just be because you each understand so you don't need to explain it. I don't know. I hope that makes sense. Whatever I'm saying is, I'm thankful for my IBD and the internet for bringing me to this point where I have this friend I never would have known otherwise. She's not the first "friend" I have now because of my illness, but she's the first I got to meet up with. I had a pretty shitty couple of days around that pocket of a couple of hours, but somehow it wasn't so bad. I won't even get into those details right now. Thanks, Casey. Glad to now really know you in real life, so when I say "my friend" it doesn't just mean a name or face in my laptop. So I'm thankful. =) Have a great day everyone. Happy Birthday to the USMC today and a big thanks to all the Veterans tomorrow.

Broken. Just broken. For now.

I guess my goal lately is to go at least a month in between posts. Not intentionally but it keeps happening. Pretty much health wise things are chugging along. Got another scope by a different doc to tell me the same thing as last time. Severe ulceration still. Some nasty fissures causing pain. Muscle spasms are back to piss me off. Couple that with the abdominal pain from my engorged fallopian tube and I'm just in pain daily. Basically nonstop. Discomfort in so many areas. There are days I'm not leaving the house unless necessary. My pain pills dull it and I'm content to be under my electric blanket and zoning out. Some days it takes everything out of me to go to class. Running errands wipes me out for the day. It's just so pathetic and ridiculous. I had to take Daughter #1 to the doctor and it struck me how much time in the last four years has been eaten up by my medical issues. I've put in some solid time. Time I could be traveling. Reading. Hell, vacuuming would be better. Ok, maybe not, but it's just such bullshit. I was driving along thinking what do I have to show for four years? Let's not reduce the importance of having my child, naturally, but really. Not much. A lot of laying on my ass with zero drive or with too much pain to accomplish anything. I got pissed. Just that angry, upset pissed and the tears just come.
I'm 36. My time has slipped through my fingers. So much of it without any joy in it. Just days of pain. Hospitals. Doctors. Driving to doctors. Filling scripts. Getting tests. I've fucking had it. There's nothing I can do either but keep going and keep thinking that there will be a point where I'm just real and whole and healthy and not broken anymore.
As shitty as it's all been, that is still MY intention. I don't look at myself as this sickly, forever disabled person who will be trapped with this crap forever. My reality speaks to the contrary but maybe I'm an idiot. I do feel broken many, many days. It makes me sad. It's this weird feeling of losing life. Your 30s are FAR from old. This is prime time baby, and I don't have the body to make it happen. That pisses me off more than I can describe. You know when you get so drunk on Friday night and you sleep all day Saturday and all of a sudden it's Sunday and you are pissed that you basically missed your whole weekend? Well, that's my life. Saturday night I went out for a friend's birthday. I laid around all day to conserve energy so I would actually make it out(Yes, if I had so much as gone out to eat, run to the store etc... there would have been a good chance it just would have used my reserves and I would have bailed). We met for food(I didn't eat. Just not worth the risk) and then went to a bar with a DJ and a band for 80s night. We all had crimped hair and looked crazy and it was fun. We get there and the music was just so great. Those of you who know my drinking/partying/out all night/dance all night days know I loved it and it was my favorite thing to do. We would go dance for hours! Well, seriously two songs in and I'm lightheaded. I've got pain shooting through my abdomen. I'm just trying, trying to smother it and be ME and have fun. But I can only fake it so much. There were a couple points I thought I may hit the floor either from pain or exhaustion. In the middle of all those people smiling and dancing and drinking and LIVING, I was HATING myself. I just felt so broken. Like who the hell am I kidding? I almost left in that moment but I couldn't. I wanted to make it as long as I could because me being there was so rare. I don't go out and I don't even mean drinking or whatever. I don't really have many friends here or go to dinner or happy hour or yoga class or book club or whatever else normal, social people do.
Not too many years ago I had things to do every night. I was either out doing things with Dillan or out doing things with friends. I was rarely home. I have NEVER been a sit at home person. I was actually surprised I got invited because I had only met everyone once prior to being invited out. It felt nice. I didn't want to be lame and let my defective body win. So I milked my Captain and coke and danced as much as I could and had a lot of fun. I'm glad I went. I miss that part of me but indulging in the old me just casts resentment on the bullshit I deal with now.
Three years after filing for SSDI and being denied three times, I finally won at my hearing in August. So in two years my case will get reviewed to see if my heath has changed. It's a weird feeling. It felt good to win after fighting so long and them being so stupid in denying that IBD can affect a person's life so much. On the flip side, I don't think of myself as being so useless. Even though it's reality. I tried to work part time and I was in so much pain and it was so hard. To be this young and have the smallest things drain you is so difficult. <sigh>  But I guess it's nice to be justified in this way. I expect in two years at the review I'm going to be perfect, and healthy and as figured out and normal as possible and pick up my life where I left off a few years back. I have vacations to take and shit to do, people. Big time. I'm less than a month out from another surgery. I've got issues separate from that that I don't see resolving before then. So this should be interesting to say the least. Nothing I can do but meet it head on but it doesn't mean I have to like it. Thanks for listening to my boo-hooing. I've had over 10, 000 hits on my blog now. That amazes me, so thank you! XO

I guess my goal lately is to go at least a month in between posts. Not intentionally but it keeps happening. Pretty much health wise things are chugging along. Got another scope by a different doc to tell me the same thing as last time. Severe ulceration still. Some nasty fissures causing pain. Muscle spasms are back to piss me off. Couple that with the abdominal pain from my engorged fallopian tube and I'm just in pain daily. Basically nonstop. Discomfort in so many areas. There are days I'm not leaving the house unless necessary. My pain pills dull it and I'm content to be under my electric blanket and zoning out. Some days it takes everything out of me to go to class. Running errands wipes me out for the day. It's just so pathetic and ridiculous. I had to take Daughter #1 to the doctor and it struck me how much time in the last four years has been eaten up by my medical issues. I've put in some solid time. Time I could be traveling. Reading. Hell, vacuuming would be better. Ok, maybe not, but it's just such bullshit. I was driving along thinking what do I have to show for four years? Let's not reduce the importance of having my child, naturally, but really. Not much. A lot of laying on my ass with zero drive or with too much pain to accomplish anything. I got pissed. Just that angry, upset pissed and the tears just come.
I'm 36. My time has slipped through my fingers. So much of it without any joy in it. Just days of pain. Hospitals. Doctors. Driving to doctors. Filling scripts. Getting tests. I've fucking had it. There's nothing I can do either but keep going and keep thinking that there will be a point where I'm just real and whole and healthy and not broken anymore.
As shitty as it's all been, that is still MY intention. I don't look at myself as this sickly, forever disabled person who will be trapped with this crap forever. My reality speaks to the contrary but maybe I'm an idiot. I do feel broken many, many days. It makes me sad. It's this weird feeling of losing life. Your 30s are FAR from old. This is prime time baby, and I don't have the body to make it happen. That pisses me off more than I can describe. You know when you get so drunk on Friday night and you sleep all day Saturday and all of a sudden it's Sunday and you are pissed that you basically missed your whole weekend? Well, that's my life. Saturday night I went out for a friend's birthday. I laid around all day to conserve energy so I would actually make it out(Yes, if I had so much as gone out to eat, run to the store etc... there would have been a good chance it just would have used my reserves and I would have bailed). We met for food(I didn't eat. Just not worth the risk) and then went to a bar with a DJ and a band for 80s night. We all had crimped hair and looked crazy and it was fun. We get there and the music was just so great. Those of you who know my drinking/partying/out all night/dance all night days know I loved it and it was my favorite thing to do. We would go dance for hours! Well, seriously two songs in and I'm lightheaded. I've got pain shooting through my abdomen. I'm just trying, trying to smother it and be ME and have fun. But I can only fake it so much. There were a couple points I thought I may hit the floor either from pain or exhaustion. In the middle of all those people smiling and dancing and drinking and LIVING, I was HATING myself. I just felt so broken. Like who the hell am I kidding? I almost left in that moment but I couldn't. I wanted to make it as long as I could because me being there was so rare. I don't go out and I don't even mean drinking or whatever. I don't really have many friends here or go to dinner or happy hour or yoga class or book club or whatever else normal, social people do.
Not too many years ago I had things to do every night. I was either out doing things with Dillan or out doing things with friends. I was rarely home. I have NEVER been a sit at home person. I was actually surprised I got invited because I had only met everyone once prior to being invited out. It felt nice. I didn't want to be lame and let my defective body win. So I milked my Captain and coke and danced as much as I could and had a lot of fun. I'm glad I went. I miss that part of me but indulging in the old me just casts resentment on the bullshit I deal with now.
Three years after filing for SSDI and being denied three times, I finally won at my hearing in August. So in two years my case will get reviewed to see if my heath has changed. It's a weird feeling. It felt good to win after fighting so long and them being so stupid in denying that IBD can affect a person's life so much. On the flip side, I don't think of myself as being so useless. Even though it's reality. I tried to work part time and I was in so much pain and it was so hard. To be this young and have the smallest things drain you is so difficult. <sigh>  But I guess it's nice to be justified in this way. I expect in two years at the review I'm going to be perfect, and healthy and as figured out and normal as possible and pick up my life where I left off a few years back. I have vacations to take and shit to do, people. Big time. I'm less than a month out from another surgery. I've got issues separate from that that I don't see resolving before then. So this should be interesting to say the least. Nothing I can do but meet it head on but it doesn't mean I have to like it. Thanks for listening to my boo-hooing. I've had over 10, 000 hits on my blog now. That amazes me, so thank you! 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

Can you be present with pain?

Hello hello internet world. I have not disappeared. I don't know what's been up with me the last few weeks. Just feeling uninspired about myself in general. Bummed out. Slightly depressed. It's frustrating. Trying to get my act together and fight through daily pain and still be PRESENT. It's tough. Pain makes me disengage. Check out. Or I get in a funk where I'm beating myself up mentally. Feeling bad about myself. I can be a hardcore Debbie Downer when I want to be. I'm going to be 36 in September. I am really down about the fact that I feel so unaccomplished the last few years. Where the hell did the time go? It goes in a flash, especially when you are chronically sick or in pain. You have nothing to show for it. It feels like I laid in bed,  or was in hospitals for the majority of the time and wasting a perfectly good life. This was not my plan. Planning is such a joke. This summer is half over already and I feel like it's disappeared. As I wrote about last post, I've been a big fail. I was starting to feel a little better but now it's just back to being crap.
I'm not working anymore. My surgeon kept extending my leave and I'll be having some other procedures soon that will require recovery and all that time just made me unreliable and a let down. It wasn't fair to my boss to just be in limbo about my status. She was so wonderful and understanding. I felt so disappointing. I still do. Many, many days I went into work in a lot of pain, struggling to get through a 5 hour shift. In the short time I worked there I went home early a couple times, and had to call in a couple. Very frustrating. Just another example of my body completely failing me. It is not something I can get used to. The thing is, it's not that I can't do something, it's the level of pain I fight while doing it, or the time to recover afterward. That's what knocks me out emotionally. It's just not fair.
My little girl turned 2 last week. She is a handful. Everyday I think I will get past this and to a better place before she gets to a point where she starts remembering. I'm tired of being lame mom. I never was. It's really hard to wrap my brain around it. Like I said- being more present. Fighting yourself to try to be that way. Many days I find distractions to waste time so I'm not focused on hurting or what I CAN'T do.
I was thinking the other day about things I used to do. I used to write. Poems, short stories... I wrote tons of them. I wonder why I stopped? That makes me a little sad. Somewhere along the line of having kids and getting sick I've lost all these little parts of me. Sometimes you don't notice until it's been years and you lost a bunch of them. I think reconnecting with 'me' would be a big help. I don't really go out of my way for time or activities for myself very often. Out with a friend occasionally. Out with Mat almost never unless we have random family in town to watch the kids. I stopped working out a million years ago because I was a sickly mess. Traveling on hold. I don't even really shop anymore! I know, right!! No shopping?? It's a crazy world, living like this. You feel great one day so you over do it and then pay for 3 days after. My semester starts soon and I just hope it won't be too much. I just want to finish and move on.... but then in the back of my head I think, "Well at this rate would I be able to work when I'm done?". Am I back in school for nothing because this shitty disease is going to sideline me forever? I would hope not, but imagine just not knowing? It sucks, big time. See- Debbie Downer. Piss, piss, pisser. I used to LOVE life. I was all in. Where did it stop? I hate that. I don't like myself much right now.
On a positive front, I don't have dysplasia. The wonderful pathologist made a typo. Yeah. Jackass. A TYPO. Thanks for that two weeks of stress, biatch. It was awesome.
Ok.. now that I've bummed everyone out big time and ruined your night, I will end. Sorry I was not entertaining and was so crappy. I'm just so blah about myself. I need something to shift and soon. As always, thanks for reading. I promise- more smiles next time!

Hello hello internet world. I have not disappeared. I don't know what's been up with me the last few weeks. Just feeling uninspired about myself in general. Bummed out. Slightly depressed. It's frustrating. Trying to get my act together and fight through daily pain and still be PRESENT. It's tough. Pain makes me disengage. Check out. Or I get in a funk where I'm beating myself up mentally. Feeling bad about myself. I can be a hardcore Debbie Downer when I want to be. I'm going to be 36 in September. I am really down about the fact that I feel so unaccomplished the last few years. Where the hell did the time go? It goes in a flash, especially when you are chronically sick or in pain. You have nothing to show for it. It feels like I laid in bed,  or was in hospitals for the majority of the time and wasting a perfectly good life. This was not my plan. Planning is such a joke. This summer is half over already and I feel like it's disappeared. As I wrote about last post, I've been a big fail. I was starting to feel a little better but now it's just back to being crap.
I'm not working anymore. My surgeon kept extending my leave and I'll be having some other procedures soon that will require recovery and all that time just made me unreliable and a let down. It wasn't fair to my boss to just be in limbo about my status. She was so wonderful and understanding. I felt so disappointing. I still do. Many, many days I went into work in a lot of pain, struggling to get through a 5 hour shift. In the short time I worked there I went home early a couple times, and had to call in a couple. Very frustrating. Just another example of my body completely failing me. It is not something I can get used to. The thing is, it's not that I can't do something, it's the level of pain I fight while doing it, or the time to recover afterward. That's what knocks me out emotionally. It's just not fair.
My little girl turned 2 last week. She is a handful. Everyday I think I will get past this and to a better place before she gets to a point where she starts remembering. I'm tired of being lame mom. I never was. It's really hard to wrap my brain around it. Like I said- being more present. Fighting yourself to try to be that way. Many days I find distractions to waste time so I'm not focused on hurting or what I CAN'T do.
I was thinking the other day about things I used to do. I used to write. Poems, short stories... I wrote tons of them. I wonder why I stopped? That makes me a little sad. Somewhere along the line of having kids and getting sick I've lost all these little parts of me. Sometimes you don't notice until it's been years and you lost a bunch of them. I think reconnecting with 'me' would be a big help. I don't really go out of my way for time or activities for myself very often. Out with a friend occasionally. Out with Mat almost never unless we have random family in town to watch the kids. I stopped working out a million years ago because I was a sickly mess. Traveling on hold. I don't even really shop anymore! I know, right!! No shopping?? It's a crazy world, living like this. You feel great one day so you over do it and then pay for 3 days after. My semester starts soon and I just hope it won't be too much. I just want to finish and move on.... but then in the back of my head I think, "Well at this rate would I be able to work when I'm done?". Am I back in school for nothing because this shitty disease is going to sideline me forever? I would hope not, but imagine just not knowing? It sucks, big time. See- Debbie Downer. Piss, piss, pisser. I used to LOVE life. I was all in. Where did it stop? I hate that. I don't like myself much right now.
On a positive front, I don't have dysplasia. The wonderful pathologist made a typo. Yeah. Jackass. A TYPO. Thanks for that two weeks of stress, biatch. It was awesome.
Ok.. now that I've bummed everyone out big time and ruined your night, I will end. Sorry I was not entertaining and was so crappy. I'm just so blah about myself. I need something to shift and soon. As always, thanks for reading. I promise- more smiles next time!

#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.

Invisibly sick... a day in my life.

So people always talk about Invisible Illnesses. IBD has that funny way of being one. You don't always look sick. Currently I'm not anemic so I'm not pale. I'm thin but not malnourished and sickly thin. I'm not weak and run down so I have what looks like normal energy levels. I'm no longer on steroids that puff my face up. I'm not on immunosuppressants that make my hair fall out. On the surface I look fine. If you didn't know, you wouldn't know. So I'm sure there are plenty of people rolling their eyes if I say I have pain or who are doubtful about why I haven't worked in years or why when I finally was feeling better and got a job, I got taken out for two weeks. I suppose it's all very easy to doubt and to not believe. Those who have had chronic pain understand. Those with IBD understand. You have weeks, months of feeling "normal" for the first time and think you have finally crossed that bridge. Then you realize you haven't even gotten there yet. I've written about the IBD stuff often enough that people get how it affects lives. Now, post surgery, a year out from colectomy I am frustrated. I am in pain. It hurts to stand, to walk, to move around. It hurts to wear anything but granny panties and sweats. It hurts to pee. I've been eating less so I won't go to the bathroom. I'm taking pain meds and muscle relaxers and topical creams to lessen my misery. No one can see any of that. No one looks at me and has any idea how much pain and discomfort I'm in while I'm carrying on the most random conversation about nothing. Google 'anal fissures'. Google 'anal fistulas'. It's horrible. Click on 'images' and it gets even better. It is graphic. They are things you probably never even considered existed. Hemorrhoids, yes maybe, but the issues that can crop up down there with IBD just aren't talked about. The whole fissure situation was bad enough...seriously. But with fistulas it's an entirely different scenario. That means surgery. More pain. I'm not here to gross you out but if you went and googled like I said to, you can only imagine. Of course many of those images are VERY extreme. But my point is, sickness can be invisible. Pain is invisible and easily hidden by those who are accustomed to having it daily. So before you pass judgement on people who 'don't look sick', you should also consider what you can't see. Issues that you'll never even consider being a possibility in life that someone right in front of you has going on. I don't know. I feel like it's been a very weird few years of my brain and body battling it out and my body winning a lot. It has been hard being in my early 30s and having to say I just don't work. I'm sure to many that sounds like a dream or is their reality, but when it's not a choice, it's different. I'm not just choosing to stay home with my kids. I'm not just choosing to be dependent on Hubs. I'm not lazy or feel like a man has to take care of me. It has not been a realistic possibility for me to work since 2010. And honestly I probably should have stopped prior to that because work was affecting my health immensely but I didn't.  I don't know where I wanted to go with this post other than to say, sometimes it just really sucks to not be in control. To be limited in your capacities and abilities and independence really sucks. It's the Anti-Lisa. And I'm tired of it. Life really does have a way of laughing at your plan. No matter how much a perfect plan or life you have plotted out, in the end you don't have very much control over it like you think. You get dealt one bad health situation and it affects you for years. You just never know what's around the corner and that goes for positive things as well. I just try to play the hand I'm dealt. I try to make the best decisions for right now, for today, because that's the only thing I'm sure of. Tomorrow may prove me wrong... I guess I'll wait and see.

So people always talk about Invisible Illnesses. IBD has that funny way of being one. You don't always look sick. Currently I'm not anemic so I'm not pale. I'm thin but not malnourished and sickly thin. I'm not weak and run down so I have what looks like normal energy levels. I'm no longer on steroids that puff my face up. I'm not on immunosuppressants that make my hair fall out. On the surface I look fine. If you didn't know, you wouldn't know. So I'm sure there are plenty of people rolling their eyes if I say I have pain or who are doubtful about why I haven't worked in years or why when I finally was feeling better and got a job, I got taken out for two weeks. I suppose it's all very easy to doubt and to not believe. Those who have had chronic pain understand. Those with IBD understand. You have weeks, months of feeling "normal" for the first time and think you have finally crossed that bridge. Then you realize you haven't even gotten there yet. I've written about the IBD stuff often enough that people get how it affects lives. Now, post surgery, a year out from colectomy I am frustrated. I am in pain. It hurts to stand, to walk, to move around. It hurts to wear anything but granny panties and sweats. It hurts to pee. I've been eating less so I won't go to the bathroom. I'm taking pain meds and muscle relaxers and topical creams to lessen my misery. No one can see any of that. No one looks at me and has any idea how much pain and discomfort I'm in while I'm carrying on the most random conversation about nothing. Google 'anal fissures'. Google 'anal fistulas'. It's horrible. Click on 'images' and it gets even better. It is graphic. They are things you probably never even considered existed. Hemorrhoids, yes maybe, but the issues that can crop up down there with IBD just aren't talked about. The whole fissure situation was bad enough...seriously. But with fistulas it's an entirely different scenario. That means surgery. More pain. I'm not here to gross you out but if you went and googled like I said to, you can only imagine. Of course many of those images are VERY extreme. But my point is, sickness can be invisible. Pain is invisible and easily hidden by those who are accustomed to having it daily. So before you pass judgement on people who 'don't look sick', you should also consider what you can't see. Issues that you'll never even consider being a possibility in life that someone right in front of you has going on. I don't know. I feel like it's been a very weird few years of my brain and body battling it out and my body winning a lot. It has been hard being in my early 30s and having to say I just don't work. I'm sure to many that sounds like a dream or is their reality, but when it's not a choice, it's different. I'm not just choosing to stay home with my kids. I'm not just choosing to be dependent on Hubs. I'm not lazy or feel like a man has to take care of me. It has not been a realistic possibility for me to work since 2010. And honestly I probably should have stopped prior to that because work was affecting my health immensely but I didn't.  I don't know where I wanted to go with this post other than to say, sometimes it just really sucks to not be in control. To be limited in your capacities and abilities and independence really sucks. It's the Anti-Lisa. And I'm tired of it. Life really does have a way of laughing at your plan. No matter how much a perfect plan or life you have plotted out, in the end you don't have very much control over it like you think. You get dealt one bad health situation and it affects you for years. You just never know what's around the corner and that goes for positive things as well. I just try to play the hand I'm dealt. I try to make the best decisions for right now, for today, because that's the only thing I'm sure of. Tomorrow may prove me wrong... I guess I'll wait and see.