It's been a long time coming...

Hello out there. I haven't written since January. Too long. I have thought about it so many times but what I wanted to say was not enough or felt too repetitive, to bother. So here I am. Stuff has happened that I could have written about but this post is 100% influenced by a friend's message I got last week on Facebook. Someone I have not seen in years. And by years I mean 20 which is odd bc I'm TOTALLY only 29 still. ;-) Anyway...

I could attempt to outline the shittiness(according to auto correct- NOT a word) that is IBD but I'm exhausted trying to recall the nonsense from almost an entire year. Let's just say, and so it goes. Pain, meds, pain management, more meds, feeling like shit, fatigue, pain, fatigue...rinse, repeat. The latest was a failed attempt at an epidural with my pain management doctor to try and "break the pain cycle" to give some relief. Not 100% but at least not have it constant. Not for nothing with this failed procedure, it was absolutely blissful to have zero abdominal pain for about four-ish days. Blissful and miserable because, as most people who are chronically ill will tell you, you get to a point where you forget the before. The old you. The normal. So you begin to have a "new" normal life. And it generally is not an upgrade. Well, this four day relief was a bit bittersweet. Getting that time of relief and suddenly remembering how I felt to be a person not in pain pissed me off a bit.
The chance I took for it to work was unknown. Everyone is different and abdominal pain is difficult to treat.
Part of me wishes I hadn't had those four days because now it's fresh. The pain free me isn't this different life fading into the past. It was last fucking month and now it's almost tangible. It is bullshit. But... it didn't work. So now I'm back to where I was before with fresh knowledge of, "Oh yeah I used to not be miserable.". I had basically gotten to the point where the comparison didn't exist because I couldn't remember. And now I can and I'm pissed about it. But it was the chance I took for it to actually work to feel that way pretty regularly. Ignorance can be bliss. That is no lie.

One amazing thing about IBD is this amazing sisterhood that has come about almost entirely online. People you tell anything to, who get you 100% and who you've never met. But they need no explanations. They just know. Some you meet and you know how much the relationship impacts all areas of life. In September I was lucky enough to be the officiant at the wedding of one of my Gutsy Girls. Her husband is amazing and she is someone I know I will always have a connection with. This is me w my hot mic for the ceremony. In true Lisa fashion, at the end, I totally forgot I was miked and started bullshitting with the Bride's sister. No one seemed to notice. Poor Trump. Heehee.

But I digress... I started this discussing a message. This friend had a friend with Crohns, my age, who didn't care for herself and had passed away. I hate reading that because while IBD is not trivial, and can be a bitch, for the most part you will not die if you do it right. Life can suck but you'll be alive. Living is a matter of opinion.
I went months not doing it right in 2009-10 and my first ER visit my Hemoglobin was a 5(they usually transfuse at a 7) and I needed 4 units. Almost half. Yes people, it takes me almost bleeding to death to go to the ER. Stupid or tough-not sure. Anyway it was too close to home. I had responded and in it mentioned how many people think it's trivial which is why I blog and post and am generally annoying about my struggles.

This was her reply: You're never annoying when you bring awareness to such a serious disease. In fact, I credit you with saving my mom's life. I read one of your blog posts a few years ago, when my mom was chronically ill. I sent it to her, which prompted her to question her doctor. She had diverticulitis, and was bleeding internally! Soooo, no, it's never annoying.
Thank you from the bottom of my heart.

Yes people, I bawled. How can you not. It was just this moment of, wow. So maybe I annoy 200 people with my "whining" or doctor check ins, or hospital pictures, but hell yes if what I have to say and what I go through can do this ONE thing??!!! Than I am fine. I'm more than fine. I do have a reason and a voice that can be impactful. Even if it's to a person I've never met who is the mom of a friend I haven't seen since we were drunk in Canada in 1999. 

That message was on October 11th. I haven't stopped thinking about it and what I wanted to say. 

So this is all of it. I feel like I need to come back to this because not only was it therapuetic for me, but apparently more helpful than I thought. People still find their way to my old posts but I hate that it basically stopped. Because it is still a journey. Still a lesson. Still a struggle. Still a life hiding more than I show to everyone. 

Love your guts, everyone. Love your health and the fact that you can! Because nothing matters when your health deteriorates. Nothing. In a month it changes. Day to day. Enjoy it. 

Thanks for reading. XOXO

Hello out there. I haven't written since January. Too long. I have thought about it so many times but what I wanted to say was not enough or felt too repetitive, to bother. So here I am. Stuff has happened that I could have written about but this post is 100% influenced by a friend's message I got last week on Facebook. Someone I have not seen in years. And by years I mean 20 which is odd bc I'm TOTALLY only 29 still. ;-) Anyway...

I could attempt to outline the shittiness(according to auto correct- NOT a word) that is IBD but I'm exhausted trying to recall the nonsense from almost an entire year. Let's just say, and so it goes. Pain, meds, pain management, more meds, feeling like shit, fatigue, pain, fatigue...rinse, repeat. The latest was a failed attempt at an epidural with my pain management doctor to try and "break the pain cycle" to give some relief. Not 100% but at least not have it constant. Not for nothing with this failed procedure, it was absolutely blissful to have zero abdominal pain for about four-ish days. Blissful and miserable because, as most people who are chronically ill will tell you, you get to a point where you forget the before. The old you. The normal. So you begin to have a "new" normal life. And it generally is not an upgrade. Well, this four day relief was a bit bittersweet. Getting that time of relief and suddenly remembering how I felt to be a person not in pain pissed me off a bit.
The chance I took for it to work was unknown. Everyone is different and abdominal pain is difficult to treat.
Part of me wishes I hadn't had those four days because now it's fresh. The pain free me isn't this different life fading into the past. It was last fucking month and now it's almost tangible. It is bullshit. But... it didn't work. So now I'm back to where I was before with fresh knowledge of, "Oh yeah I used to not be miserable.". I had basically gotten to the point where the comparison didn't exist because I couldn't remember. And now I can and I'm pissed about it. But it was the chance I took for it to actually work to feel that way pretty regularly. Ignorance can be bliss. That is no lie.

One amazing thing about IBD is this amazing sisterhood that has come about almost entirely online. People you tell anything to, who get you 100% and who you've never met. But they need no explanations. They just know. Some you meet and you know how much the relationship impacts all areas of life. In September I was lucky enough to be the officiant at the wedding of one of my Gutsy Girls. Her husband is amazing and she is someone I know I will always have a connection with. This is me w my hot mic for the ceremony. In true Lisa fashion, at the end, I totally forgot I was miked and started bullshitting with the Bride's sister. No one seemed to notice. Poor Trump. Heehee.

But I digress... I started this discussing a message. This friend had a friend with Crohns, my age, who didn't care for herself and had passed away. I hate reading that because while IBD is not trivial, and can be a bitch, for the most part you will not die if you do it right. Life can suck but you'll be alive. Living is a matter of opinion.
I went months not doing it right in 2009-10 and my first ER visit my Hemoglobin was a 5(they usually transfuse at a 7) and I needed 4 units. Almost half. Yes people, it takes me almost bleeding to death to go to the ER. Stupid or tough-not sure. Anyway it was too close to home. I had responded and in it mentioned how many people think it's trivial which is why I blog and post and am generally annoying about my struggles.

This was her reply: You're never annoying when you bring awareness to such a serious disease. In fact, I credit you with saving my mom's life. I read one of your blog posts a few years ago, when my mom was chronically ill. I sent it to her, which prompted her to question her doctor. She had diverticulitis, and was bleeding internally! Soooo, no, it's never annoying.
Thank you from the bottom of my heart.

Yes people, I bawled. How can you not. It was just this moment of, wow. So maybe I annoy 200 people with my "whining" or doctor check ins, or hospital pictures, but hell yes if what I have to say and what I go through can do this ONE thing??!!! Than I am fine. I'm more than fine. I do have a reason and a voice that can be impactful. Even if it's to a person I've never met who is the mom of a friend I haven't seen since we were drunk in Canada in 1999. 

That message was on October 11th. I haven't stopped thinking about it and what I wanted to say. 

So this is all of it. I feel like I need to come back to this because not only was it therapuetic for me, but apparently more helpful than I thought. People still find their way to my old posts but I hate that it basically stopped. Because it is still a journey. Still a lesson. Still a struggle. Still a life hiding more than I show to everyone. 

Love your guts, everyone. Love your health and the fact that you can! Because nothing matters when your health deteriorates. Nothing. In a month it changes. Day to day. Enjoy it. 

Thanks for reading. XOXO

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. 

Who's life is this anyway?

Well, it has come to this. I waited a bit after surgery to write because I just wasn't up to it and have not been really happy with everything about myself.
My week in the hospital was HORRIBLE. HORRIBLE. It took forever to get going because my one surgeon AND the anesthesiologist got stuck in another surgery at a different hospital. So I sat around like this, in pain, for HOURS. Hungry. Anxious. Freezing. In asshole Christmas socks.

But then they finally showed up and I got good drugs. Oh and 2 units of blood. Naturally. My hemoglobin was in the 6s. Yeah. How I don't pass out on a regular basis is beyond me. 

****Do me a favor people. Donate blood. Even if it's once a year. I've officially had enough units to replace 100% of my blood volume. And I've never been able to give back because of meds or because it's too close to the most recent transfusion. So please. Go do it for me.****

Then it was go time. Slice and dice. Again. Done. Over it. 

Post OP they could not get my pain under control for almost 48 hours. I was at a 10/10 the first night into the next day. I wanted someone to just shoot me in the head. My PCA wouldn't light up fast enough. My EVA from WALL-E. A little magic button of pain relief. Here I am stoned. Yet still in pain. It just wasn't enough.

I can't even describe it. Internal pain, external incision pain, pain from the new stoma, my stomach screaming at me because it hadn't had anything in it in almost 48 hours. Not even an ice chip. If I could have strangled someone with my IV lines I would have. But it hurt too much to move. Plus it's really tough getting an IV going on me so I didn't want to risk losing one. While I was under the anesthesiologist gave me a "back up" IV because I blow IVs like it's my job with my shitty little veins. Then I crossed into ileus which is when your guts aren't entirely awake yet after surgery. Paralysis. So they gave me the ok for liquids and I couldn't help myself. JELLO!!! The apple juice was the greatest thing I'd ever had. By this time I hadn't eaten or drank in 3 days. Here is what sent me into a personal hell for 48 hours. Mind you that's about all I ate. Maybe 3 tiny bites. And I paid for it for 2 days.

 The intestinal pain started because some things were working and some weren't. Then I started barfing my brains out. Violent and disgusting. It was unlike anything I had ever experienced and I'm pretty sure I wanted to die. Again. I missed getting an NG tube by the skin of my teeth. That's when they put a tube down your nose and throat into your stomach and suck everything out so you aren't getting sick anymore. I just couldn't handle that on top of everything else. So I kept puking and crying and dealing with the pain and sickness hoping it would stop. My colorectal surgeon gave me until the next morning and then I was getting one put in. The ileus has the same symptoms of a blockage so he was getting worried. My nurses must have thought I was nuts. They told me to get one. Easy for them to say. Luckily it passed. I could sip a little bit while on Zofram and Phenergan and be ok, so I got through it without one more invasive event happening.
So then finally after the 5th day I felt like I was moving toward recovery. I was finally walking and Hubs and Daughter #2 joined me with her balloon gloves.

Anyway- I've been crabby. This hospital stay crossed some emotional line with me. Maybe because it was multiple procedures in one. Maybe because I thought the hospital sucked. Half my nurses thought I'd only had a hysterectomy. The other half an ileostomy. In my week there I didn't meet one person (aside from my surgeons) who were aware I had multiple procedures in my surgery. One shift of nurses didn't even acknowledge my OBGYN as a doctor. I needed a new gown and was so out of it. So on one of her visits she buzzed and asked them where the gowns were. They pointed. Oh yeah. Pointed. That went over like a lead balloon. She proceeded to stay with me for an hour just talking to me. Changed my gown herself and took care of me. She is seriously the best doctor I have ever met. Popped in on her off Saturday with her DAUGHTER to check on me. Her partner was on call but she came anyway because she was worried about me. She's amazing. But I digress. I've been feeling beaten and defeated. I don't want to do this shit anymore. I've had it. I've had it with recovery. With being cut open. With scars and pain and hospitals. HAD IT. My FrankenBelly is worse. It is hideous. They cut through scar tissue so it just aches. My stoma is bleeding around the outside. Here's my new Stupid Stoma. I will say having already had one, the adjustment to it has been leaps and bounds better. I'm emotionally removed from the event. I am having some minor skin issues but I think I'm top of it since I've done this before. He moved it closer to my belly button this time which kinda pissed me off because it's really hard getting a good seal on your wafer with the crevice of your belly button so close to the stoma. But I'm small and he has to put it in a certain spot based on abdominals (that I barely have anyway) so his choices are limited.

It hurts all around it internally. I have sharp internal pain where my sausage fallopian tube was. It's probably just tissue that's healing but it hurts likes a bitch. I don't know. Sometimes I seriously don't know how the hell I continually go through this crap and keep it together. I'm close to losing it I think.
I was going to go to NY after Christmas to go to my Aunt's wedding. Then the surgery got pushed to December so I couldn't. The wedding was last night and seeing the pictures today have made me really sad and really prompted me finally writing this post. I'm sick of things interfering with MY life and what I want to do. So I missed my Aunt's wedding and I'm sad about it. I don't DO anything. My pain and surgeries and issues rule my activities, or lack thereof. WTF am I doing? I know I've said it before but it seriously like years of my life have slipped away. There's always something that is a roadblock to me living. This year Christmas was a wreck because I was in recovery mode. So I couldn't do what I wanted. I've lost almost 10lbs and I'm tired. I'm dehydrated. Making dinner killed me for 3 days. I definitely overdid it last week with my mom and stepdad here. I didn't even do much but I overdid it. What was I supposed to do? Lay in bed with people in town? I mean what the hell. Something has to give. Not to mention what I spend on meds and now will be spending on ostomy supplies for the next few months. I'm in a funk. I hate myself. I'm exhausted. I'm hurting. It's another month gone. Another winter I didn't go to a tropical island with my husband. Another event I missed.
On top of it, I have incompletes in my classes because I couldn't take my finals. So I will have to deal with that in the next few weeks. Kind of nervous. The hiatus probably did nothing for my retention. Sucks. Just sucks.
So yeah. That's me. Crabby. Cut up. No motivation. I feel more broken than ever. And you know what literally feels like a stab in the chest? I shouldn't say it because everything is relative but that fact doesn't change how it makes me feel. It kills me when people complain about the smallest thing. It's really hard to hear people complain about how absolutely miserable they are with a head cold, their flight is delayed or whatever when I'm stapled shut AGAIN and my kids and their holiday impacted by that fact. People take their health for granted so much. Take their abilities for granted. Jumping up and playing with their kids. Spending hours making cookies. Shopping for that perfect gift. Actually being able to get on a plane to travel. I'd take a 7 hour delay to be able to go away but it seems I never can. Pop some alka seltzer for your cold. Have some drinks at the airport and people watch. Be grateful you don't have chronic pain. Or have been gutted more than once. Or have kids who are used to you being sick and in the hospital. =(  Sorry, like I said I know everything is relative but I can't help it. I would have killed to have had some of the "problems" some people have had over the holidays. That's my reality. I don't know when it'll change or if it ever will. I don't know that this temporary ostomy will work. Maybe my guts don't know how to be healthy. Maybe my pouchitis and flares will come back after my NEXT surgery. It's all a crap shoot. I know this though... at some point I will do what I want anyway whether it be while in pain or during recovery or whatever because I have had it with my life not feeling like mine. I go days without going outside. I've become the anti-Lisa. I am so far from who I was and I can only hope that these years of bullshit haven't erased all of it. I already feel a big part of me not caring. Of letting opportunities pass by because it will take so much out of me to make it happen. That was never me. If I won a vacation tomorrow there is a part of me that wouldn't care. That would assume I couldn't do it, or it would be too much work or I'd get there and not be able to do what I wanted. It sucks. That negative fog just keeps trying to creep around and win. I just need one good stretch of time where I don't have any issues and I know it would go away. I just need to get there. Maybe in 2014.
Thanks for reading. Hope everyone had a wonderful whatever holiday they celebrate. Happy New Year.
<a href="http://www.bloglovin.com/blog/12277951/?claim=75juqmu6hv7">Follow my blog with Bloglovin</a>

Well, it has come to this. I waited a bit after surgery to write because I just wasn't up to it and have not been really happy with everything about myself.
My week in the hospital was HORRIBLE. HORRIBLE. It took forever to get going because my one surgeon AND the anesthesiologist got stuck in another surgery at a different hospital. So I sat around like this, in pain, for HOURS. Hungry. Anxious. Freezing. In asshole Christmas socks.

But then they finally showed up and I got good drugs. Oh and 2 units of blood. Naturally. My hemoglobin was in the 6s. Yeah. How I don't pass out on a regular basis is beyond me. 

****Do me a favor people. Donate blood. Even if it's once a year. I've officially had enough units to replace 100% of my blood volume. And I've never been able to give back because of meds or because it's too close to the most recent transfusion. So please. Go do it for me.****

Then it was go time. Slice and dice. Again. Done. Over it. 

Post OP they could not get my pain under control for almost 48 hours. I was at a 10/10 the first night into the next day. I wanted someone to just shoot me in the head. My PCA wouldn't light up fast enough. My EVA from WALL-E. A little magic button of pain relief. Here I am stoned. Yet still in pain. It just wasn't enough.

I can't even describe it. Internal pain, external incision pain, pain from the new stoma, my stomach screaming at me because it hadn't had anything in it in almost 48 hours. Not even an ice chip. If I could have strangled someone with my IV lines I would have. But it hurt too much to move. Plus it's really tough getting an IV going on me so I didn't want to risk losing one. While I was under the anesthesiologist gave me a "back up" IV because I blow IVs like it's my job with my shitty little veins. Then I crossed into ileus which is when your guts aren't entirely awake yet after surgery. Paralysis. So they gave me the ok for liquids and I couldn't help myself. JELLO!!! The apple juice was the greatest thing I'd ever had. By this time I hadn't eaten or drank in 3 days. Here is what sent me into a personal hell for 48 hours. Mind you that's about all I ate. Maybe 3 tiny bites. And I paid for it for 2 days.

 The intestinal pain started because some things were working and some weren't. Then I started barfing my brains out. Violent and disgusting. It was unlike anything I had ever experienced and I'm pretty sure I wanted to die. Again. I missed getting an NG tube by the skin of my teeth. That's when they put a tube down your nose and throat into your stomach and suck everything out so you aren't getting sick anymore. I just couldn't handle that on top of everything else. So I kept puking and crying and dealing with the pain and sickness hoping it would stop. My colorectal surgeon gave me until the next morning and then I was getting one put in. The ileus has the same symptoms of a blockage so he was getting worried. My nurses must have thought I was nuts. They told me to get one. Easy for them to say. Luckily it passed. I could sip a little bit while on Zofram and Phenergan and be ok, so I got through it without one more invasive event happening.
So then finally after the 5th day I felt like I was moving toward recovery. I was finally walking and Hubs and Daughter #2 joined me with her balloon gloves.

Anyway- I've been crabby. This hospital stay crossed some emotional line with me. Maybe because it was multiple procedures in one. Maybe because I thought the hospital sucked. Half my nurses thought I'd only had a hysterectomy. The other half an ileostomy. In my week there I didn't meet one person (aside from my surgeons) who were aware I had multiple procedures in my surgery. One shift of nurses didn't even acknowledge my OBGYN as a doctor. I needed a new gown and was so out of it. So on one of her visits she buzzed and asked them where the gowns were. They pointed. Oh yeah. Pointed. That went over like a lead balloon. She proceeded to stay with me for an hour just talking to me. Changed my gown herself and took care of me. She is seriously the best doctor I have ever met. Popped in on her off Saturday with her DAUGHTER to check on me. Her partner was on call but she came anyway because she was worried about me. She's amazing. But I digress. I've been feeling beaten and defeated. I don't want to do this shit anymore. I've had it. I've had it with recovery. With being cut open. With scars and pain and hospitals. HAD IT. My FrankenBelly is worse. It is hideous. They cut through scar tissue so it just aches. My stoma is bleeding around the outside. Here's my new Stupid Stoma. I will say having already had one, the adjustment to it has been leaps and bounds better. I'm emotionally removed from the event. I am having some minor skin issues but I think I'm top of it since I've done this before. He moved it closer to my belly button this time which kinda pissed me off because it's really hard getting a good seal on your wafer with the crevice of your belly button so close to the stoma. But I'm small and he has to put it in a certain spot based on abdominals (that I barely have anyway) so his choices are limited.

It hurts all around it internally. I have sharp internal pain where my sausage fallopian tube was. It's probably just tissue that's healing but it hurts likes a bitch. I don't know. Sometimes I seriously don't know how the hell I continually go through this crap and keep it together. I'm close to losing it I think.
I was going to go to NY after Christmas to go to my Aunt's wedding. Then the surgery got pushed to December so I couldn't. The wedding was last night and seeing the pictures today have made me really sad and really prompted me finally writing this post. I'm sick of things interfering with MY life and what I want to do. So I missed my Aunt's wedding and I'm sad about it. I don't DO anything. My pain and surgeries and issues rule my activities, or lack thereof. WTF am I doing? I know I've said it before but it seriously like years of my life have slipped away. There's always something that is a roadblock to me living. This year Christmas was a wreck because I was in recovery mode. So I couldn't do what I wanted. I've lost almost 10lbs and I'm tired. I'm dehydrated. Making dinner killed me for 3 days. I definitely overdid it last week with my mom and stepdad here. I didn't even do much but I overdid it. What was I supposed to do? Lay in bed with people in town? I mean what the hell. Something has to give. Not to mention what I spend on meds and now will be spending on ostomy supplies for the next few months. I'm in a funk. I hate myself. I'm exhausted. I'm hurting. It's another month gone. Another winter I didn't go to a tropical island with my husband. Another event I missed.
On top of it, I have incompletes in my classes because I couldn't take my finals. So I will have to deal with that in the next few weeks. Kind of nervous. The hiatus probably did nothing for my retention. Sucks. Just sucks.
So yeah. That's me. Crabby. Cut up. No motivation. I feel more broken than ever. And you know what literally feels like a stab in the chest? I shouldn't say it because everything is relative but that fact doesn't change how it makes me feel. It kills me when people complain about the smallest thing. It's really hard to hear people complain about how absolutely miserable they are with a head cold, their flight is delayed or whatever when I'm stapled shut AGAIN and my kids and their holiday impacted by that fact. People take their health for granted so much. Take their abilities for granted. Jumping up and playing with their kids. Spending hours making cookies. Shopping for that perfect gift. Actually being able to get on a plane to travel. I'd take a 7 hour delay to be able to go away but it seems I never can. Pop some alka seltzer for your cold. Have some drinks at the airport and people watch. Be grateful you don't have chronic pain. Or have been gutted more than once. Or have kids who are used to you being sick and in the hospital. =(  Sorry, like I said I know everything is relative but I can't help it. I would have killed to have had some of the "problems" some people have had over the holidays. That's my reality. I don't know when it'll change or if it ever will. I don't know that this temporary ostomy will work. Maybe my guts don't know how to be healthy. Maybe my pouchitis and flares will come back after my NEXT surgery. It's all a crap shoot. I know this though... at some point I will do what I want anyway whether it be while in pain or during recovery or whatever because I have had it with my life not feeling like mine. I go days without going outside. I've become the anti-Lisa. I am so far from who I was and I can only hope that these years of bullshit haven't erased all of it. I already feel a big part of me not caring. Of letting opportunities pass by because it will take so much out of me to make it happen. That was never me. If I won a vacation tomorrow there is a part of me that wouldn't care. That would assume I couldn't do it, or it would be too much work or I'd get there and not be able to do what I wanted. It sucks. That negative fog just keeps trying to creep around and win. I just need one good stretch of time where I don't have any issues and I know it would go away. I just need to get there. Maybe in 2014.
Thanks for reading. Hope everyone had a wonderful whatever holiday they celebrate. Happy New Year.
<a href="http://www.bloglovin.com/blog/12277951/?claim=75juqmu6hv7">Follow my blog with Bloglovin</a>

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

#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.