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

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.

"Perseverance, secret of all triumphs."

Hey everyone,
I wanted to write within a month of the last one but, well, honestly it's the same shit. I'M TIRED of hearing it so it seemed ridiculous for me to put it out into the universe. But hey, here I am. Since I last wrote my skin has gotten worse. I'm blowing wafers left and right and they aren't cheap. I'm talking a box of 10 over a weekend and wafers are made to last upwards of a week. I've requested some new products and hoping they work better. Something is off this time where the right wafers are NOT working with my body this time. I know after so many weight fluctuations and surgeries, my abdominal landscape is very deformed. Nothing is flat. So my wafers aren't sealing properly. It blows. I have what feels like the worst sunburn you can imagine, then will adhesive and wax that bonds to the skin that you continually have to tear off sometimes multiple times a day. And it itches. I want to tear into it but I can't. I won't post a pic because it is just awful. It makes a person extremely assholey to be that uncomfortable all the time, 24/7. Yes, no typo. Assholey.
So because of the assholey feeling I'm stuck in, I didn't want to write. I want to hide. Well, I don't truly but I do because of this crap.
My classes started. I'm taking 2 on campus and one online. I feel overextended most days. I could sleep til noon everyday. I sleep like shit. I look like shit. I'm run down and listless. Walking up the stairs hurts. From the amount of output from my ostomy, and the consistency, food is blowing through me and I'm probably absorbing nothing. I've had labs and they all show electrolytes are god but I don't feel right. I don't feel healthy. Aside from skin issues, that's my main issue. If I had energy and slept well the skin issues wouldn't impact me the way they do. I'll take my Jpouch over this. That's saying something because if you've been reading, I was really having issues with my colitis. But they way I see it now, my body HATES ostomies. My skin hates them. My ostomy is like a turtle head. It recesses back into my body and with that, behind the wafer hence mucho leakage and mucho acid eating at my skin. So because I'm a jackass, if I'm going to have discomfort, I want my vanity. I want convenience. I want my JPouch. Yes. I said vanity. I have little for the most part which is evident in me voluntarily getting an ostomy. I will bet 99% off people would not take that route for vanity. But whatever. I did because sometimes I can be a bad ass bitch and I bit the bullet. Well, surgeon says it looks like I'm healing well internally. He'll knock me out and scope me in 2 months and figure out my reversal back to JPouch. Another week in the hospital. Another chance of ileus. Can't wait.
But I'll do it and hopefully PREVENTING the inflammation will prove to be a better option from trying to get rid of it. Because that didn't work. AT ALL. Hence my situation.
I'm thankful for my husband that puts up with all this nonsense from me. I love him. I'm lucky I have him in my life. I'm sure many days he wants to slap the bitchiness right out of me. Many days. MANY.
So patiently waiting for new supplies. I will update on if they work, and hopefully they will. We are going away in March and I'd like to travel somewhat comfortably and not have the trip ruined by blowing ostomy wafers. Springing a leak and having to change in an airplane bathroom sounds like the least fun thing to do on vacation. Nah, I can think of a few more but regardless no fun for Lisa.
Ok everyone, it's time to go lights out. I have an early class that goes long and mornings and me are not besties.
Hope everyone is staying warm. This winter is just dragging. XO

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Hey everyone,
I wanted to write within a month of the last one but, well, honestly it's the same shit. I'M TIRED of hearing it so it seemed ridiculous for me to put it out into the universe. But hey, here I am. Since I last wrote my skin has gotten worse. I'm blowing wafers left and right and they aren't cheap. I'm talking a box of 10 over a weekend and wafers are made to last upwards of a week. I've requested some new products and hoping they work better. Something is off this time where the right wafers are NOT working with my body this time. I know after so many weight fluctuations and surgeries, my abdominal landscape is very deformed. Nothing is flat. So my wafers aren't sealing properly. It blows. I have what feels like the worst sunburn you can imagine, then will adhesive and wax that bonds to the skin that you continually have to tear off sometimes multiple times a day. And it itches. I want to tear into it but I can't. I won't post a pic because it is just awful. It makes a person extremely assholey to be that uncomfortable all the time, 24/7. Yes, no typo. Assholey.
So because of the assholey feeling I'm stuck in, I didn't want to write. I want to hide. Well, I don't truly but I do because of this crap.
My classes started. I'm taking 2 on campus and one online. I feel overextended most days. I could sleep til noon everyday. I sleep like shit. I look like shit. I'm run down and listless. Walking up the stairs hurts. From the amount of output from my ostomy, and the consistency, food is blowing through me and I'm probably absorbing nothing. I've had labs and they all show electrolytes are god but I don't feel right. I don't feel healthy. Aside from skin issues, that's my main issue. If I had energy and slept well the skin issues wouldn't impact me the way they do. I'll take my Jpouch over this. That's saying something because if you've been reading, I was really having issues with my colitis. But they way I see it now, my body HATES ostomies. My skin hates them. My ostomy is like a turtle head. It recesses back into my body and with that, behind the wafer hence mucho leakage and mucho acid eating at my skin. So because I'm a jackass, if I'm going to have discomfort, I want my vanity. I want convenience. I want my JPouch. Yes. I said vanity. I have little for the most part which is evident in me voluntarily getting an ostomy. I will bet 99% off people would not take that route for vanity. But whatever. I did because sometimes I can be a bad ass bitch and I bit the bullet. Well, surgeon says it looks like I'm healing well internally. He'll knock me out and scope me in 2 months and figure out my reversal back to JPouch. Another week in the hospital. Another chance of ileus. Can't wait.
But I'll do it and hopefully PREVENTING the inflammation will prove to be a better option from trying to get rid of it. Because that didn't work. AT ALL. Hence my situation.
I'm thankful for my husband that puts up with all this nonsense from me. I love him. I'm lucky I have him in my life. I'm sure many days he wants to slap the bitchiness right out of me. Many days. MANY.
So patiently waiting for new supplies. I will update on if they work, and hopefully they will. We are going away in March and I'd like to travel somewhat comfortably and not have the trip ruined by blowing ostomy wafers. Springing a leak and having to change in an airplane bathroom sounds like the least fun thing to do on vacation. Nah, I can think of a few more but regardless no fun for Lisa.
Ok everyone, it's time to go lights out. I have an early class that goes long and mornings and me are not besties.
Hope everyone is staying warm. This winter is just dragging. XO

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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.

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!

Unexpected recovery.

Well, in my last post I talked about getting scoped to check for fistulas, fissures etc... Tuesday morning came and I was STARVING after being on fluids all day Monday.

Ready to go. A simple scope, right?

 I couldn't wait to eat after my scope. It's always one of my favorite meals because you realize how great food is after spending two days on chicken broth.

My view of the lights in the OR. Just hanging out, waiting. 

Well, imagine my surprise(horror) when I woke up from anesthesia in absolute, excruciating pain and in tears. Waking up crying isn't exactly normal. I was there alone b/c I've had so many scopes that it is nothing to me, so I had told Hubs to leave and just head back when they call that I'm in recovery. I was my surgeon's last procedure before he left to have his office hours and was still out when he checked in before he left. So in my fog, I heard the nurse say something about surgery, she handed me a Lortab and then said she was calling my surgeon. I was just laying there crying... Not to be completely ridiculous but it felt like someone drove a car up my ass. After 20 minutes the Lortab had done nothing. At that point I was wishing for post delivery pain from having my kids. Lovely. So I vaguely hear her on the phone. She returned like an angel with a push of Demerol for my IV, so within 5 seconds I was a happy and completely stoned girl. Hubs shows up and talks to my surgeon. He discovered a few issues while doing the scope. Ulcers and inflammation in the 1cm of what's left of my rectum and anal fistulas. Now, if you were a good student and googled 'fistulas' like I said, you would have found out that they are essentially an infection that burrows and fills with pus below the surface. As you can imagine, pockets of that can cause the extreme pain I had been dealing with for MONTHS.  Sexy, I know... settle down!! I am one lucky bitch!!
 So the only way to treat these disgusting things is to open them up and clean them out and let them drain. Antibiotics don't work. So, yeah. I woke up to that having been done to my ass. And he took a bunch of biopsies as well because of the inflammation. I'm actually kinda thankful he just did it while he had me there. The procedure cost $1200 so having had to go back and pay that again would have pissed me off. As it is I feel like someone should have paid ME for having to go through that shit. Just disgusting. I mean, prior to me getting sick I never even knew this kind of crap existed for people. I suppose that's why I talk about it.
Needless to say, my Norcos have been my best friend since Wednesday. Tuesday I was out for the count for the rest of the day which I'm used to. Anesthesia has always done that which I don't mind.
It has been pretty painful this week. Walking around is nearly impossible. Squatting, sitting... I can't lift for another week while this crap heals. I'm afraid to eat because you can imagine how fun going to the bathroom is with all that nonsense going on... so it's been pretty cool. Not at all.
So yeah, the last few weeks have really sucked. Last night I got the coolest message from a friend I haven't seen in years... He said my blog was like me- "honest and awesome". I have to say, that made my night. It's funny how you may think someone may not even consider you at all...and then have them say something so great like that. I don't know. It was just pretty cool. So, to my friend, thank you for that. =)

Trying to make recovery look easy.

I'm hoping the next few days has the pain tapering off. I see my Surgeon on the 3rd so I will get all my biopsy results back. He's assuming it will be Proctitis and not Crohn's like we feared. I'm just preparing for the worst anyway. It tends to make the reality easier. Regardless, this means I will be going on meds  of some type. Possibly a steroid. None of that is making me happy because the whole reason I went with getting gutted was to avoid pumping myself full of meds forever. <sigh> Such complete bullshit. Like really, that 1cm has to give me trouble after getting over 5 feet of guts removed. Ridiculous. Sneaky disease. I'm still going to shut you down. It might take me another 5 years. Whatever. But I'm going to win. I always win. ;-)
Thanks for reading... go out and run around and eat a bunch of food, and drink some beer for me, ok? Sweet! I appreciate it.

Well, in my last post I talked about getting scoped to check for fistulas, fissures etc... Tuesday morning came and I was STARVING after being on fluids all day Monday.

Ready to go. A simple scope, right?

 I couldn't wait to eat after my scope. It's always one of my favorite meals because you realize how great food is after spending two days on chicken broth.

My view of the lights in the OR. Just hanging out, waiting. 

Well, imagine my surprise(horror) when I woke up from anesthesia in absolute, excruciating pain and in tears. Waking up crying isn't exactly normal. I was there alone b/c I've had so many scopes that it is nothing to me, so I had told Hubs to leave and just head back when they call that I'm in recovery. I was my surgeon's last procedure before he left to have his office hours and was still out when he checked in before he left. So in my fog, I heard the nurse say something about surgery, she handed me a Lortab and then said she was calling my surgeon. I was just laying there crying... Not to be completely ridiculous but it felt like someone drove a car up my ass. After 20 minutes the Lortab had done nothing. At that point I was wishing for post delivery pain from having my kids. Lovely. So I vaguely hear her on the phone. She returned like an angel with a push of Demerol for my IV, so within 5 seconds I was a happy and completely stoned girl. Hubs shows up and talks to my surgeon. He discovered a few issues while doing the scope. Ulcers and inflammation in the 1cm of what's left of my rectum and anal fistulas. Now, if you were a good student and googled 'fistulas' like I said, you would have found out that they are essentially an infection that burrows and fills with pus below the surface. As you can imagine, pockets of that can cause the extreme pain I had been dealing with for MONTHS.  Sexy, I know... settle down!! I am one lucky bitch!!
 So the only way to treat these disgusting things is to open them up and clean them out and let them drain. Antibiotics don't work. So, yeah. I woke up to that having been done to my ass. And he took a bunch of biopsies as well because of the inflammation. I'm actually kinda thankful he just did it while he had me there. The procedure cost $1200 so having had to go back and pay that again would have pissed me off. As it is I feel like someone should have paid ME for having to go through that shit. Just disgusting. I mean, prior to me getting sick I never even knew this kind of crap existed for people. I suppose that's why I talk about it.
Needless to say, my Norcos have been my best friend since Wednesday. Tuesday I was out for the count for the rest of the day which I'm used to. Anesthesia has always done that which I don't mind.
It has been pretty painful this week. Walking around is nearly impossible. Squatting, sitting... I can't lift for another week while this crap heals. I'm afraid to eat because you can imagine how fun going to the bathroom is with all that nonsense going on... so it's been pretty cool. Not at all.
So yeah, the last few weeks have really sucked. Last night I got the coolest message from a friend I haven't seen in years... He said my blog was like me- "honest and awesome". I have to say, that made my night. It's funny how you may think someone may not even consider you at all...and then have them say something so great like that. I don't know. It was just pretty cool. So, to my friend, thank you for that. =)

Trying to make recovery look easy.

I'm hoping the next few days has the pain tapering off. I see my Surgeon on the 3rd so I will get all my biopsy results back. He's assuming it will be Proctitis and not Crohn's like we feared. I'm just preparing for the worst anyway. It tends to make the reality easier. Regardless, this means I will be going on meds  of some type. Possibly a steroid. None of that is making me happy because the whole reason I went with getting gutted was to avoid pumping myself full of meds forever. <sigh> Such complete bullshit. Like really, that 1cm has to give me trouble after getting over 5 feet of guts removed. Ridiculous. Sneaky disease. I'm still going to shut you down. It might take me another 5 years. Whatever. But I'm going to win. I always win. ;-)
Thanks for reading... go out and run around and eat a bunch of food, and drink some beer for me, ok? Sweet! I appreciate it.

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.

The mask I wear...

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

Concealer, bronzer, highlighter and Norco= fake health. 

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

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

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

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

Concealer, bronzer, highlighter and Norco= fake health. 

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

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

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

I'm in pain & uncomfortable & bitchy & I'm not sorry.

Hey there--- It's been a bit. I didn't mean to go this long but life has a way of making me feel like I got blasted with a Louisville slugger and then I'm down for the count. That was way too many sports references in one sentence!
So I've been working part time and for the most part it's kicking my ass. I am just so thoroughly exhausted I can barely function on my days off. I feel so guilty because I just want to sit down and not get up. It takes everything in me to get ready... When I work I don't eat much that day so I've lost some weight that I can't afford to lose. So work days I eat maybe one time. I don't drink enough on those days either so I know it's contributing to my dehydration, sluggishness and lightheadedness. It's just not a good combination. It amazes me what that 20-25 hours is doing to me. Not to mention the days I am in so much pain while I'm working. There are nights I don't think I'll make it. Or I need to take care of something while it feels like a hot poker is searing through my insides with my spasms. It's beyond frustrating. Some days I just want to give up and stay in bed because I think, that may be overdoing it at the moment. I don't know. I'm in a horrible catch 22.
Being in chronic pain takes so much out of me. I'm wiped out over the littlest thing. And it's hard to explain it, or make people understand without just sounding like a big lazy wuss. I was supposed to see my surgeon this week  but they rescheduled me once and then I had to reschedule it due to some personal commitments. So still doing the same meds. The antispasmotic drug puts me in a coma so I guess it works???? I don't know because I'm in a coma. So that's out for daytime. 5mg of Flexeril doesn't do much and if I up it to 10mg I'll be stoned out of my mind. Same with the Valium. So not sure what to do next. Some days I can't even think about dealing with this forever. I hate thinking that way because I keep telling myself, "Well, you aren't bleeding to death anymore", but that doesn't take the current pain away. And my canker sores are back. I have 5. That used to be my warning signs for a flare. When I get them now I freak internally. So it's Stress? IBD? I don't know but they Hurt! I don't consider myself to NOT have an IBD anymore although technically my UC was gone when my colon hit the biohazard bin. I still feel as though I am an IBD patient. I always will be. The actual diseased part of my body is gone, but the aftershock of that surgery continues to affect my daily life. I don't know what to do anymore. I don't know how to deal with it some days. I am just so worn out. I had two late nights at work and on my day off today have no energy to enjoy it. What kind of shit is that??? Complete shit, that's what. I don't enjoy cooking anymore because I feel like anything I eat will kill me later, and the effort it takes is more than the energy I have. I am mentally exhausted from the stress my physical limitations cause me. Every night when I go to bed I dread the morning because it comes too soon. My sleep is broken nightly. On the odd night I sleep through the night, it's a drug induced sleep and I still feel like shit the following day.
 I know... I bitch and moan and complain...blah blah. I'm running on empty. Faking being okay takes a lot of work and today I don't feel like pretending. I want to be a crabby bitch who is in pain and discomfort CONSTANTLY and I don't want to apologize for it. I'm sorry that this is inconvenient for some but- oh well. Too bad, so sad.  I won the big IBD lottery which has been a big ole F you for me, so anyone else's inconvenience is the least of my problems. Ugh-- I HATE being this person. Today isn't an anomaly. I just took my mask off. Figuratively and literally. I'm not even putting makeup on today.  Today I want to be a miserable, chronically sick asshole and not be apologetic for it. And that's all I've got. Sorry this was a pisser. Tomorrow may bring me something to feel happier about. Enjoy your health. Don't take it for granted. Take advantage of just being able to do whatever you want. Don't put that run off until tomorrow. Or the day trip or the hike..... One day you may not be able to accomplish it because of something you have no control over and you will wonder why you put it off. Thanks for reading. Enjoy your weekend, everyone. XO

Hey there--- It's been a bit. I didn't mean to go this long but life has a way of making me feel like I got blasted with a Louisville slugger and then I'm down for the count. That was way too many sports references in one sentence!
So I've been working part time and for the most part it's kicking my ass. I am just so thoroughly exhausted I can barely function on my days off. I feel so guilty because I just want to sit down and not get up. It takes everything in me to get ready... When I work I don't eat much that day so I've lost some weight that I can't afford to lose. So work days I eat maybe one time. I don't drink enough on those days either so I know it's contributing to my dehydration, sluggishness and lightheadedness. It's just not a good combination. It amazes me what that 20-25 hours is doing to me. Not to mention the days I am in so much pain while I'm working. There are nights I don't think I'll make it. Or I need to take care of something while it feels like a hot poker is searing through my insides with my spasms. It's beyond frustrating. Some days I just want to give up and stay in bed because I think, that may be overdoing it at the moment. I don't know. I'm in a horrible catch 22.
Being in chronic pain takes so much out of me. I'm wiped out over the littlest thing. And it's hard to explain it, or make people understand without just sounding like a big lazy wuss. I was supposed to see my surgeon this week  but they rescheduled me once and then I had to reschedule it due to some personal commitments. So still doing the same meds. The antispasmotic drug puts me in a coma so I guess it works???? I don't know because I'm in a coma. So that's out for daytime. 5mg of Flexeril doesn't do much and if I up it to 10mg I'll be stoned out of my mind. Same with the Valium. So not sure what to do next. Some days I can't even think about dealing with this forever. I hate thinking that way because I keep telling myself, "Well, you aren't bleeding to death anymore", but that doesn't take the current pain away. And my canker sores are back. I have 5. That used to be my warning signs for a flare. When I get them now I freak internally. So it's Stress? IBD? I don't know but they Hurt! I don't consider myself to NOT have an IBD anymore although technically my UC was gone when my colon hit the biohazard bin. I still feel as though I am an IBD patient. I always will be. The actual diseased part of my body is gone, but the aftershock of that surgery continues to affect my daily life. I don't know what to do anymore. I don't know how to deal with it some days. I am just so worn out. I had two late nights at work and on my day off today have no energy to enjoy it. What kind of shit is that??? Complete shit, that's what. I don't enjoy cooking anymore because I feel like anything I eat will kill me later, and the effort it takes is more than the energy I have. I am mentally exhausted from the stress my physical limitations cause me. Every night when I go to bed I dread the morning because it comes too soon. My sleep is broken nightly. On the odd night I sleep through the night, it's a drug induced sleep and I still feel like shit the following day.
 I know... I bitch and moan and complain...blah blah. I'm running on empty. Faking being okay takes a lot of work and today I don't feel like pretending. I want to be a crabby bitch who is in pain and discomfort CONSTANTLY and I don't want to apologize for it. I'm sorry that this is inconvenient for some but- oh well. Too bad, so sad.  I won the big IBD lottery which has been a big ole F you for me, so anyone else's inconvenience is the least of my problems. Ugh-- I HATE being this person. Today isn't an anomaly. I just took my mask off. Figuratively and literally. I'm not even putting makeup on today.  Today I want to be a miserable, chronically sick asshole and not be apologetic for it. And that's all I've got. Sorry this was a pisser. Tomorrow may bring me something to feel happier about. Enjoy your health. Don't take it for granted. Take advantage of just being able to do whatever you want. Don't put that run off until tomorrow. Or the day trip or the hike..... One day you may not be able to accomplish it because of something you have no control over and you will wonder why you put it off. Thanks for reading. Enjoy your weekend, everyone. XO

happy colonlessiversary...or something.

One year. About the same exact time I sit here typing I was waking up from anesthesia. It seems nearly dreamlike, but I can say it was the most intense pain I have ever experienced. There are no words to explain it. Naturally they wake you up, you feel pain and then they get you going with the good meds. But in the time they moved me from a gurney to my bed, I thought I was dying. Hubs said I made animal sounds. Just primal, hurting sounds. I remember them telling me to roll and shift so they could move me. I remember just crying and saying I couldn't. I had just been cut open from above my belly button to my pelvic bone. My guts were separated from the surrounding organs and tissue. He pulled out my small intestines and looked them over for signs of Crohn's. He then put all of that back in and proceeded to remove all five feet of my large intestines and almost all of my rectum. Just enough was left to attach my J Pouch later. The loose end of my small bowel was formed into a reservoir shaped like a "J" and that was attached to what was left of my rectum. A portion of my small intestines much closer to the stomach was then disconnected from the rest and rerouted out through my abdomen at a stoma site so nothing would pass to the J Pouch while it healed. I was then stapled shut. All that shit hurts. The incision hurt. The stoma site hurt. The internal pain hurt. I felt like I got run over. Getting gutted is no joke. I just looked through my post op pics. I remember thinking my scar was so intense. In one year I almost forget it's there. But I don't hide it.

From being stapled shut after surgery---->

40 staples

Early scar, about 2 weeks post op after staples came out --->

FrankenBelly

Two days ago on World IBD Day.

I remember wondering if it was going to look like train tracks forever.
One year ago was the end of one long battle that changed me, crushed a lot of my spirit, messed with my self esteem, altered my body image, made me fear food, and made me doubt what I can do. It has been a very different type of battle this year, especially my time with an ostomy. There were nights I struggled and cried and said I couldn't do it. Hubs would say, "Well, it's too late. You have to. They can't put your colon back in now". My post surgical pain only ever came close to my UC flare pain the first few days post op. By the time I was home my flare pain put my recovery to shame.'
I still struggle. I will never be normal. Some days are worse than others. Some days are so great I forget I'm missing a major organ. Other days I swear I don't know how I can live this way. In terms of having colitis, no I technically don't have it anymore since Ulcerative colitis is only in the colon. But I struggle. My life is impacted everyday by this change in my anatomy. There are some foods I'll never eat again. There are other foods I just can't say no to and I pay for it for almost two days. I may have issues forever. They will never compare to a flare but regardless, they are there. My scar tissue pain has finally started subsiding. My fear that I have Crohn's and not UC is slowly fading as time goes on. I still have symptoms I am dealing with daily that keep me on alert. I can dehydrate very quickly and some days I get lightheaded fast because of it. I spent my first day out in the heat the other day and it didn't go so well. It hit me fast. Summers will be a continuous effort to stay hydrated and keep myself from blacking out. My absorption probably isn't the best and when my levels drop I feel it pretty quickly. I don't want to say I may have limitations forever. I hope not. I hate that thought and I hate when my body holds me back and betrays me. I don't want to be afraid to go for a bike ride. Or wonder if my spasms will shackle me for the day, or keep me up all night. I can only take it and it comes and play the hand I'm dealt. Being back at work part time has already been impacted by it. I hate that. I don't like feeling like maybe I can't hold up my end because my stupid body has other plans. It's hard. It hurts. It frustrates me and creates a lot of self doubt. Hoping that will lessen as time goes by.
 Anyway- Happy one year to me being colonless and getting to tell my story. Thanks everyone for being supportive and reading and sharing. Love to all.
XO from one gutsy broad. =-)

One year. About the same exact time I sit here typing I was waking up from anesthesia. It seems nearly dreamlike, but I can say it was the most intense pain I have ever experienced. There are no words to explain it. Naturally they wake you up, you feel pain and then they get you going with the good meds. But in the time they moved me from a gurney to my bed, I thought I was dying. Hubs said I made animal sounds. Just primal, hurting sounds. I remember them telling me to roll and shift so they could move me. I remember just crying and saying I couldn't. I had just been cut open from above my belly button to my pelvic bone. My guts were separated from the surrounding organs and tissue. He pulled out my small intestines and looked them over for signs of Crohn's. He then put all of that back in and proceeded to remove all five feet of my large intestines and almost all of my rectum. Just enough was left to attach my J Pouch later. The loose end of my small bowel was formed into a reservoir shaped like a "J" and that was attached to what was left of my rectum. A portion of my small intestines much closer to the stomach was then disconnected from the rest and rerouted out through my abdomen at a stoma site so nothing would pass to the J Pouch while it healed. I was then stapled shut. All that shit hurts. The incision hurt. The stoma site hurt. The internal pain hurt. I felt like I got run over. Getting gutted is no joke. I just looked through my post op pics. I remember thinking my scar was so intense. In one year I almost forget it's there. But I don't hide it.

From being stapled shut after surgery---->

40 staples

Early scar, about 2 weeks post op after staples came out --->

FrankenBelly

Two days ago on World IBD Day.

I remember wondering if it was going to look like train tracks forever.
One year ago was the end of one long battle that changed me, crushed a lot of my spirit, messed with my self esteem, altered my body image, made me fear food, and made me doubt what I can do. It has been a very different type of battle this year, especially my time with an ostomy. There were nights I struggled and cried and said I couldn't do it. Hubs would say, "Well, it's too late. You have to. They can't put your colon back in now". My post surgical pain only ever came close to my UC flare pain the first few days post op. By the time I was home my flare pain put my recovery to shame.'
I still struggle. I will never be normal. Some days are worse than others. Some days are so great I forget I'm missing a major organ. Other days I swear I don't know how I can live this way. In terms of having colitis, no I technically don't have it anymore since Ulcerative colitis is only in the colon. But I struggle. My life is impacted everyday by this change in my anatomy. There are some foods I'll never eat again. There are other foods I just can't say no to and I pay for it for almost two days. I may have issues forever. They will never compare to a flare but regardless, they are there. My scar tissue pain has finally started subsiding. My fear that I have Crohn's and not UC is slowly fading as time goes on. I still have symptoms I am dealing with daily that keep me on alert. I can dehydrate very quickly and some days I get lightheaded fast because of it. I spent my first day out in the heat the other day and it didn't go so well. It hit me fast. Summers will be a continuous effort to stay hydrated and keep myself from blacking out. My absorption probably isn't the best and when my levels drop I feel it pretty quickly. I don't want to say I may have limitations forever. I hope not. I hate that thought and I hate when my body holds me back and betrays me. I don't want to be afraid to go for a bike ride. Or wonder if my spasms will shackle me for the day, or keep me up all night. I can only take it and it comes and play the hand I'm dealt. Being back at work part time has already been impacted by it. I hate that. I don't like feeling like maybe I can't hold up my end because my stupid body has other plans. It's hard. It hurts. It frustrates me and creates a lot of self doubt. Hoping that will lessen as time goes by.
 Anyway- Happy one year to me being colonless and getting to tell my story. Thanks everyone for being supportive and reading and sharing. Love to all.
XO from one gutsy broad. =-)

WEGO health Writing day #30- I slacked big time. A day late....

Yesterday's prompt--- Today, write a recap of your experience. What was your favorite prompt? Least favorite? What have you learned? Or describe your HAWMC experience in one word!

I tried. I really did. Between starting back to work, school homework, kids etc... I can't believe I managed to do 14 out of 30. I think that's a pretty good average.
Some days I knew what I wanted to write but didn't have the time, or the energy to get it done. Some days I just plain forgot I had it going on.
I like Day 7, 9 and 19.
Here are the links to them.....

http://gutsylisa.blogspot.com/2013/04/day-7-wego-writers-challenge.html?zx=aa8d516472424431

http://gutsylisa.blogspot.com/2013/04/wego-health-writers-challenge-day-9.html

http://gutsylisa.blogspot.com/2013/04/wego-day-19-vintage-lisa-throwback-pic.html

I've been really realizing the last few weeks how much impact my daily symptoms have on my life. I've been struggling with spasms STILL. The Flexeril and Valium barely keep them limited enough so I can function but I have had some days recently that a double dose didn't help. I went back to work and from day #1 my body is retaliating. Pain. Spasms. I can smile and fake it through most of my pain and discomfort now. I've had lots of practice.
Today I feel worn out. Just completely run down. It's a flashback feeling I don't like at all. I could just lay in bed all day. I'm working 5-10pm today so something has to give or it'll be a long rough night.
The frustration of feeling like I'm at the mercy of my stupid body that won't get it's act together is indescribable. I HATE it. The broken sleep is killing me. Being awake from 3-430 in the morning KILLS me. It's nightly. I'm tired(ha!) of it. My brain wants to wake up and go for a run. My body wants to stay in the fetal position in PJs all day long. I'm upset. I'm pissed. I'm annoyed. I'm fed up. I went for an MRI yesterday to see if there is anything the inconclusive $700 CT scan missed. For $700 it should have come to clean my bathrooms too. So now we wait. I should have results by tomorrow. I'm losing blood. Daily. It's not much but ANY puts me in panic mode. I definitely haven't hit anemic mode or anything because I know that feeling all too well. I can function like it ain't no thang at a 7 hemoglobin when normal is around 14. Sick girl. Ugh.
Also the self esteem is at an all time rock bottom low lately. I hate what I see. Oddly, my scars are the last thing I'm dissatisfied with!! it's everything else. I'm just weak. And look like shit. I'm tired. I'm out of shape. I feel like I've aged 10 years in the last 4. Chronic pain and illness will do that I suppose.
Anyway, enough of my sobbing.
Have a good day everyone. My semester is winding down. Having a mental battle about what to do about school. On the fence about continuing. I need a nap. Or a drink. Whatever.

Yesterday's prompt--- Today, write a recap of your experience. What was your favorite prompt? Least favorite? What have you learned? Or describe your HAWMC experience in one word!

I tried. I really did. Between starting back to work, school homework, kids etc... I can't believe I managed to do 14 out of 30. I think that's a pretty good average.
Some days I knew what I wanted to write but didn't have the time, or the energy to get it done. Some days I just plain forgot I had it going on.
I like Day 7, 9 and 19.
Here are the links to them.....

http://gutsylisa.blogspot.com/2013/04/day-7-wego-writers-challenge.html?zx=aa8d516472424431

http://gutsylisa.blogspot.com/2013/04/wego-health-writers-challenge-day-9.html

http://gutsylisa.blogspot.com/2013/04/wego-day-19-vintage-lisa-throwback-pic.html

I've been really realizing the last few weeks how much impact my daily symptoms have on my life. I've been struggling with spasms STILL. The Flexeril and Valium barely keep them limited enough so I can function but I have had some days recently that a double dose didn't help. I went back to work and from day #1 my body is retaliating. Pain. Spasms. I can smile and fake it through most of my pain and discomfort now. I've had lots of practice.
Today I feel worn out. Just completely run down. It's a flashback feeling I don't like at all. I could just lay in bed all day. I'm working 5-10pm today so something has to give or it'll be a long rough night.
The frustration of feeling like I'm at the mercy of my stupid body that won't get it's act together is indescribable. I HATE it. The broken sleep is killing me. Being awake from 3-430 in the morning KILLS me. It's nightly. I'm tired(ha!) of it. My brain wants to wake up and go for a run. My body wants to stay in the fetal position in PJs all day long. I'm upset. I'm pissed. I'm annoyed. I'm fed up. I went for an MRI yesterday to see if there is anything the inconclusive $700 CT scan missed. For $700 it should have come to clean my bathrooms too. So now we wait. I should have results by tomorrow. I'm losing blood. Daily. It's not much but ANY puts me in panic mode. I definitely haven't hit anemic mode or anything because I know that feeling all too well. I can function like it ain't no thang at a 7 hemoglobin when normal is around 14. Sick girl. Ugh.
Also the self esteem is at an all time rock bottom low lately. I hate what I see. Oddly, my scars are the last thing I'm dissatisfied with!! it's everything else. I'm just weak. And look like shit. I'm tired. I'm out of shape. I feel like I've aged 10 years in the last 4. Chronic pain and illness will do that I suppose.
Anyway, enough of my sobbing.
Have a good day everyone. My semester is winding down. Having a mental battle about what to do about school. On the fence about continuing. I need a nap. Or a drink. Whatever.

WEGO writing challenge day#23- hasta luego, social media.

Today's prompt--
Write about how your life would change if there was no social media.

Well, firstly I would no longer be able to play word games with high school friends who live across the country that I haven't seen in 18 years. That would lead to me having a lot more free time. Although, they say word games, crosswords etc... keep the mind active, and young and can prevent dementia in later years. So, I like to think of the time I put in to Words with Friends and Scramble with Friends as preventative measures against mental health decline. I am trying not to lose my marbles.  Candy Crush is it's own thing and I refuse to contemplate what it does to my brain. 
Without social media I would not have such an awesome network of IBDers that I know understand my deal. I'd be missing out on connections with old friends that I lost contact with. I may not be married to my husband.  
I love my blog outlet. I love writing it, even though I do tend to slack from time to time. If there was no blogging or tweeting I'd be missing out on other people's stories and may be feeling much more isolated with everything I have gone through. 
I like connecting with people who I would never know, and yet there they are, like friends I've always had. For as much bullshit that is on the internet there are so many more positives. Effortless connections are wonderful. 

Today's prompt--
Write about how your life would change if there was no social media.

Well, firstly I would no longer be able to play word games with high school friends who live across the country that I haven't seen in 18 years. That would lead to me having a lot more free time. Although, they say word games, crosswords etc... keep the mind active, and young and can prevent dementia in later years. So, I like to think of the time I put in to Words with Friends and Scramble with Friends as preventative measures against mental health decline. I am trying not to lose my marbles.  Candy Crush is it's own thing and I refuse to contemplate what it does to my brain. 
Without social media I would not have such an awesome network of IBDers that I know understand my deal. I'd be missing out on connections with old friends that I lost contact with. I may not be married to my husband.  
I love my blog outlet. I love writing it, even though I do tend to slack from time to time. If there was no blogging or tweeting I'd be missing out on other people's stories and may be feeling much more isolated with everything I have gone through. 
I like connecting with people who I would never know, and yet there they are, like friends I've always had. For as much bullshit that is on the internet there are so many more positives. Effortless connections are wonderful. 

WEGO Day #19- Vintage Lisa throwback pic

Today’s Prompt:

• Post a vintage photo of yourself, with a caption about the photo and where you were in terms of your health condition.

The joy of finding a beautiful vintage item is the history behind it, imagining how it was used or worn and cherished by its previous owner. In many ways, vintage items have lived a whole other life before coming into yours. Take this concept and apply it to a vintage photo of yourself. What story does this photo tell about you and your condition? What was your life like when it was taken? How have things changed since then?

I am 'only' 35 so I don't know how vintage I can really be. Maybe to a 15 year old I am but when I think vintage I think the 1940s and 1950s. Pin-up girls and poodle skirts. Glam Hollywood. Red lips and peep toe shoes. 

Anyway, my last laptop crashed and I lost all my pictures because I was an idiot and never backed it up. BACK UP YOUR COMPUTERS EVERYONE! 

This means I lost everything from the second I went to digital. Daughter #1 as a little munchkin, her Kinder field trips, a lot of my illness documentation, pregnancy pics, nights out with friends, family, vacations, my wedding day to Hubs... I have to stop because thinking of it makes me sick to my stomach.

 So it was slim pickings, but here is vintage Lisa. 

It was the St. Patrick's Day parade day in Buffalo 2009. Insanity! We started off with brunch at 1030am at Cole's and literally wandered around bar to bar until we ended back at Cole's for an 11pm meal! I was with a group of people I love and have a blast with and miss so much now that I'm in Texas. I had a job I loved, awesome coworkers, the social life was kicking because I was going through a divorce and perpetually celebrating it. It was the Lisa D variety show!! I was working hard, playing hard and hadn't been diagnosed yet. I was a better mom now that I wasn't with my ex who was destroying my life. Symptoms were still mild where I wasn't worried and hadn't even seen a doctor yet. Life was good. I was starting over and I felt like ANYTHING was possible.  ---->

VERY shortly after this day my life would change, symptoms got worse and I officially became a 'sick' girl. 

Today’s Prompt:

• Post a vintage photo of yourself, with a caption about the photo and where you were in terms of your health condition.

The joy of finding a beautiful vintage item is the history behind it, imagining how it was used or worn and cherished by its previous owner. In many ways, vintage items have lived a whole other life before coming into yours. Take this concept and apply it to a vintage photo of yourself. What story does this photo tell about you and your condition? What was your life like when it was taken? How have things changed since then?

I am 'only' 35 so I don't know how vintage I can really be. Maybe to a 15 year old I am but when I think vintage I think the 1940s and 1950s. Pin-up girls and poodle skirts. Glam Hollywood. Red lips and peep toe shoes. 

Anyway, my last laptop crashed and I lost all my pictures because I was an idiot and never backed it up. BACK UP YOUR COMPUTERS EVERYONE! 

This means I lost everything from the second I went to digital. Daughter #1 as a little munchkin, her Kinder field trips, a lot of my illness documentation, pregnancy pics, nights out with friends, family, vacations, my wedding day to Hubs... I have to stop because thinking of it makes me sick to my stomach.

 So it was slim pickings, but here is vintage Lisa. 

It was the St. Patrick's Day parade day in Buffalo 2009. Insanity! We started off with brunch at 1030am at Cole's and literally wandered around bar to bar until we ended back at Cole's for an 11pm meal! I was with a group of people I love and have a blast with and miss so much now that I'm in Texas. I had a job I loved, awesome coworkers, the social life was kicking because I was going through a divorce and perpetually celebrating it. It was the Lisa D variety show!! I was working hard, playing hard and hadn't been diagnosed yet. I was a better mom now that I wasn't with my ex who was destroying my life. Symptoms were still mild where I wasn't worried and hadn't even seen a doctor yet. Life was good. I was starting over and I felt like ANYTHING was possible.  ---->

VERY shortly after this day my life would change, symptoms got worse and I officially became a 'sick' girl. 

WEGO writing challenge Day #17. Word Cloud from my Blog.

I know it's been a bit. Life got in my way..feeling like crap, pain, trying to study, starting a new job! I just couldn't get in time for blogging. Anyway, I'm back! 

Wordless Wednesday
Go to http://hub.am/17EReet to create a word cloud or tree from a list of words associated with your condition, blog, or interests. Post it!

Here it is----> IBD is a big part. So is love and people and a lot of other things. =)

I know it's been a bit. Life got in my way..feeling like crap, pain, trying to study, starting a new job! I just couldn't get in time for blogging. Anyway, I'm back! 

Wordless Wednesday
Go to http://hub.am/17EReet to create a word cloud or tree from a list of words associated with your condition, blog, or interests. Post it!

Here it is----> IBD is a big part. So is love and people and a lot of other things. =)

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

Today's prompt. 

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

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

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

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

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

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

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

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

Today's prompt. 

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

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

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

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

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

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

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

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