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

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. 

Spring Break of Yuck

PHEW!! Here I am.. so completely late with a post but after I got back from our Spring Break trip to Florida, school went into overdrive and I had no time at all. School has been a killer. Rethinking my options and coming up with a Plan B. I am just not intuitively a "science person". I am struggling. Big time. What I want to do and what I'm cut out to do don't seem to be meshing very well. It is such a vigorous and competitive program, it's unreal. Lots of frustration. It's making me crazy!
I had load of work due right before break that was just overwhelming. I was so happy to have class end that Thursday and was looking forward to flying to Florida for a few days and have no stress, no agenda. Sounds perfect, right? Too good to be true? Well, duh. Naturally!!
Me with the girls on the plane----->

We got into Daytona Beach on Friday and had a great weekend. It was a bit colder than I like but we got to the beach and everything was going great. I rocked a bikini with my scars and my near death skin tone. Exhibit A--->

Then Monday hit. The 19 month old was exploding out of both ends. No fever. Super clingy and barfing so I was in luck and she was puking all over me. After being covered in crap and poop for about 24 hours, I basically was just waiting for me to get it. How could I avoid a virus that I was essentially covered in? I hoped it would pass quickly for Daughter #2 and skip me so we could have the last day or so of a nice vacay. Hahahahahahahaah, YEAH RIGHT!!! I got it. Bad. D #2's had stopped by Tuesday morning for the most part. I was still feeling A-OK Tuesday evening. Then 1am hit and the queasiness started. Awesome. I laid there just hoping it would pass. Maybe I ate too much. Anything. Nope. By 2am I was a wreck. Violently throwing up and running for the john. Sometimes simultaneously. I know. Isn't that a great visual. You're welcome. =)
By 7am I found out my mom had it too. By 730am I was seeing spots and could barely stand up. Let's keep in mind I have no colon, which is your water, salt and electrolyte absorber. So I'm already prone to dehydration on a good day. The Norovirus explosions were killing me. If I took one sip of Gatorade, I would throw it right up. It wasn't looking good. After years of being malnourished, dehydrated and anemic, I know when I need medical attention and when I'm within seconds of blacking out. It's not even a scary feeling anymore. Being a chronically ill person makes you weird. But I digress. Let's keep in mind that I was supposed to fly out at 230p. Doubtful. So a plan was made for me to get IV fluids and my Hubs back in TX was calling Delta to find out how to change my flight due to medical reasons. I was so out of it I couldn't form a comprehensive thought. HORRIBLE. Luckily my mom works for a primary care doctor who does IVs at the office so they awesomely fit me in during their lunch hour to top off my fluids. My BP was 84/62 and resting HR 119. None of which is a good thing combined. So yeah- and naturally my crap ass veins coupled with the dehydration made it so it took 5 sticks and an hour to even get the IV in. I was hurting. Those of you with good veins should feel lucky. Having someone dig around in a vein to get it hurts like a BITCH. Not to mention the sweet junkie bruises that get left behind. I had some tears of frustration, not going to lie. I get so pissed off at times like that. The simplest thing like getting an IV threaded turns into a hour long nightmare.
I was having horrible cramps and spasms which led my brain into a spiral of fear because it felt like I was flaring again. Freaked me out. I was really upset. Laying there that day does nothing but solidify the fact that I'll never be "NORMAL". I will always be fighting and battling something because my body is down one major organ. My anatomy is forever altered which brings on it's own set of bullshit problems.  Anyone looking at me would never guess my internal issues. I'm sure people rolled their eyes that I needed fluids that easily. Whatever. I'm over what people think. That 24 hour Norovirus knocked me down for easily a week. Even going on two weeks later, my spasms are continuing worse than before and I am hurting. I've upped my muscle relaxers and got more pain pills from my surgeon who I happened to see the day after I got back. All from that stupid virus. I joked that I didn't even puke that much on Spring Break in college. Seriously. Nasty business. If you don't know much about it, I'm including a link my Hubs found. It's a very smart virus. Too smart. My oldest daughter never got sick, but Hubs did a few days after I got home. Misery.
Here's the link--->>>>   http://phenomena.nationalgeographic.com/2013/01/02/the-norovirus-a-study-in-puked-perfection/
It's a very interesting read and scary all at once. These tiny little bastards could wipe us out if they wanted to.

Here are some pics from the trip before everyone started hurling. Enjoy and thanks for reading! XO

PHEW!! Here I am.. so completely late with a post but after I got back from our Spring Break trip to Florida, school went into overdrive and I had no time at all. School has been a killer. Rethinking my options and coming up with a Plan B. I am just not intuitively a "science person". I am struggling. Big time. What I want to do and what I'm cut out to do don't seem to be meshing very well. It is such a vigorous and competitive program, it's unreal. Lots of frustration. It's making me crazy!
I had load of work due right before break that was just overwhelming. I was so happy to have class end that Thursday and was looking forward to flying to Florida for a few days and have no stress, no agenda. Sounds perfect, right? Too good to be true? Well, duh. Naturally!!
Me with the girls on the plane----->

We got into Daytona Beach on Friday and had a great weekend. It was a bit colder than I like but we got to the beach and everything was going great. I rocked a bikini with my scars and my near death skin tone. Exhibit A--->

Then Monday hit. The 19 month old was exploding out of both ends. No fever. Super clingy and barfing so I was in luck and she was puking all over me. After being covered in crap and poop for about 24 hours, I basically was just waiting for me to get it. How could I avoid a virus that I was essentially covered in? I hoped it would pass quickly for Daughter #2 and skip me so we could have the last day or so of a nice vacay. Hahahahahahahaah, YEAH RIGHT!!! I got it. Bad. D #2's had stopped by Tuesday morning for the most part. I was still feeling A-OK Tuesday evening. Then 1am hit and the queasiness started. Awesome. I laid there just hoping it would pass. Maybe I ate too much. Anything. Nope. By 2am I was a wreck. Violently throwing up and running for the john. Sometimes simultaneously. I know. Isn't that a great visual. You're welcome. =)
By 7am I found out my mom had it too. By 730am I was seeing spots and could barely stand up. Let's keep in mind I have no colon, which is your water, salt and electrolyte absorber. So I'm already prone to dehydration on a good day. The Norovirus explosions were killing me. If I took one sip of Gatorade, I would throw it right up. It wasn't looking good. After years of being malnourished, dehydrated and anemic, I know when I need medical attention and when I'm within seconds of blacking out. It's not even a scary feeling anymore. Being a chronically ill person makes you weird. But I digress. Let's keep in mind that I was supposed to fly out at 230p. Doubtful. So a plan was made for me to get IV fluids and my Hubs back in TX was calling Delta to find out how to change my flight due to medical reasons. I was so out of it I couldn't form a comprehensive thought. HORRIBLE. Luckily my mom works for a primary care doctor who does IVs at the office so they awesomely fit me in during their lunch hour to top off my fluids. My BP was 84/62 and resting HR 119. None of which is a good thing combined. So yeah- and naturally my crap ass veins coupled with the dehydration made it so it took 5 sticks and an hour to even get the IV in. I was hurting. Those of you with good veins should feel lucky. Having someone dig around in a vein to get it hurts like a BITCH. Not to mention the sweet junkie bruises that get left behind. I had some tears of frustration, not going to lie. I get so pissed off at times like that. The simplest thing like getting an IV threaded turns into a hour long nightmare.
I was having horrible cramps and spasms which led my brain into a spiral of fear because it felt like I was flaring again. Freaked me out. I was really upset. Laying there that day does nothing but solidify the fact that I'll never be "NORMAL". I will always be fighting and battling something because my body is down one major organ. My anatomy is forever altered which brings on it's own set of bullshit problems.  Anyone looking at me would never guess my internal issues. I'm sure people rolled their eyes that I needed fluids that easily. Whatever. I'm over what people think. That 24 hour Norovirus knocked me down for easily a week. Even going on two weeks later, my spasms are continuing worse than before and I am hurting. I've upped my muscle relaxers and got more pain pills from my surgeon who I happened to see the day after I got back. All from that stupid virus. I joked that I didn't even puke that much on Spring Break in college. Seriously. Nasty business. If you don't know much about it, I'm including a link my Hubs found. It's a very smart virus. Too smart. My oldest daughter never got sick, but Hubs did a few days after I got home. Misery.
Here's the link--->>>>   http://phenomena.nationalgeographic.com/2013/01/02/the-norovirus-a-study-in-puked-perfection/
It's a very interesting read and scary all at once. These tiny little bastards could wipe us out if they wanted to.

Here are some pics from the trip before everyone started hurling. Enjoy and thanks for reading! XO

Crohn's & Colitis Awareness week.

Hello out there. Starting on the 1st, it's Crohn's and Colitis Awareness week. I'm pretty sure we need a month because it continually blows my mind how people have never heard of either disease. 1 in 200 Americans has IBD. That's nothing to ignore. That's a pretty solid number. This is the reason why I basically don't shut up about my life and I'm online and talking about my guts, and my aches and pains nonstop. We, the IBDers, can't shut up. We have to be a pain in the ass and keep telling our stories.
This week has been a pretty rough week. I'm 8 days out from foot surgery and it still hurts pretty bad so I'm still taking Vicodin for it. Well, how many narcotics can a 110lb girl take a day? My usual routine is Lomotil twice a day to slow my system down(narcotic as it is related to demerol), and Flexeril(muscle relaxer) for some continuing spasms in a delicate area that are very painful. Sooooo- yeah... Taking some Hydros on top of that is probably a recipe for disaster so I quit the Flexeril and the spasms came back. But if I take that with the Hydros I go into a coma. I also cut my Lomotil in half which has triggered me cramping and going to the bathroom nonstop. It has a been miserable but I think I finally got a combo figured out that is working. <sigh>
I'm only 9 weeks post Op and I guess I think I'm Wonder Woman and should be just recovered and normal and moving on. This week taught me I'm far from it. I know it generally takes a year for the Jpouch to get working correctly and adapt but here I am in 9 weeks getting pissed because I'm still having issues. I'm nuts. I'm slowly coming to realize I am never going to be "normal". All of you who have known me for years are laughing because you know I never was! But seriously, I guess I had a teeny tiny delusion that I'd get put back together, and the only way I'd know about all these issues were from my scars. Uhhh- yeah. Nice one Lisa. Dumbass. I will forever have issues with food. There will always be things that I will need to avoid, or will give me pain. I may always have scar tissue pain. I may develop adhesions later and they cause pain. I may develop pouchitis and be sick from that. These are all things I know. I do. I just have to remember it daily and be conscious of it. I have to stop myself from overdoing it. I have to avoid things I REALLY enjoy, like salads, and filet mignon.
I will never be a normal person. Technically, I no longer have UC. I kicked it's ass big time. But I am forever an IBD warrior. I may always have issues. I wouldn't go back. Four years ago my symptoms started. I ignored them. I was recently separated and going out a lot. Working a lot. Sleeping little. I blamed them on my lifestyle change. I didn't have time to be sick. I was running nonstop as a newly single mom, running a store, having a social life again. By the beginning of 2009 my symptoms got worse and weird. I pushed through it still. I don't know if I had gone to a doctor sooner if it would have mattered or not. I think no matter I was heading toward getting gutted. I'm happy I went through it. I've learned a lot about my capabilities. I'm a strong bitch. I overcame. I fought even when every cell in my body wanted to collapse and stop. I'm happy it came to surgery too. No more biologics being pumped into me. My hair is pretty much grown in from all of it falling out from steroids. The meds always scared me more than being gutted. Truly. I don't think there is anything that can scare me anymore.
Back to Awareness week! Purple is the awareness color for IBD. I've made sure to rock my purple daily. Here I am for the week. ;-) Enjoy.
Listen to your bodies everyone. You know when something is off, and not normal. Don't wait. It won't hurt to get tested or checked out. It can hurt to wait. Take care of your body. Be your own advocate and cheerleader. Speak up about your journey and battles. You never know who it may help.
XOXO

Day #1. Great Bowel Movement shirt, CCFA bracelet, Girls w Guts bracelet

Day #2 Purple nails.

Day #3 I had a rough couple nights.  I was very crabby.  Still in purple. 

Today, day #4.Weirdo! No bangs. I hate me without bangs now. Still exhausted. Up til 4am.

Hello out there. Starting on the 1st, it's Crohn's and Colitis Awareness week. I'm pretty sure we need a month because it continually blows my mind how people have never heard of either disease. 1 in 200 Americans has IBD. That's nothing to ignore. That's a pretty solid number. This is the reason why I basically don't shut up about my life and I'm online and talking about my guts, and my aches and pains nonstop. We, the IBDers, can't shut up. We have to be a pain in the ass and keep telling our stories.
This week has been a pretty rough week. I'm 8 days out from foot surgery and it still hurts pretty bad so I'm still taking Vicodin for it. Well, how many narcotics can a 110lb girl take a day? My usual routine is Lomotil twice a day to slow my system down(narcotic as it is related to demerol), and Flexeril(muscle relaxer) for some continuing spasms in a delicate area that are very painful. Sooooo- yeah... Taking some Hydros on top of that is probably a recipe for disaster so I quit the Flexeril and the spasms came back. But if I take that with the Hydros I go into a coma. I also cut my Lomotil in half which has triggered me cramping and going to the bathroom nonstop. It has a been miserable but I think I finally got a combo figured out that is working. <sigh>
I'm only 9 weeks post Op and I guess I think I'm Wonder Woman and should be just recovered and normal and moving on. This week taught me I'm far from it. I know it generally takes a year for the Jpouch to get working correctly and adapt but here I am in 9 weeks getting pissed because I'm still having issues. I'm nuts. I'm slowly coming to realize I am never going to be "normal". All of you who have known me for years are laughing because you know I never was! But seriously, I guess I had a teeny tiny delusion that I'd get put back together, and the only way I'd know about all these issues were from my scars. Uhhh- yeah. Nice one Lisa. Dumbass. I will forever have issues with food. There will always be things that I will need to avoid, or will give me pain. I may always have scar tissue pain. I may develop adhesions later and they cause pain. I may develop pouchitis and be sick from that. These are all things I know. I do. I just have to remember it daily and be conscious of it. I have to stop myself from overdoing it. I have to avoid things I REALLY enjoy, like salads, and filet mignon.
I will never be a normal person. Technically, I no longer have UC. I kicked it's ass big time. But I am forever an IBD warrior. I may always have issues. I wouldn't go back. Four years ago my symptoms started. I ignored them. I was recently separated and going out a lot. Working a lot. Sleeping little. I blamed them on my lifestyle change. I didn't have time to be sick. I was running nonstop as a newly single mom, running a store, having a social life again. By the beginning of 2009 my symptoms got worse and weird. I pushed through it still. I don't know if I had gone to a doctor sooner if it would have mattered or not. I think no matter I was heading toward getting gutted. I'm happy I went through it. I've learned a lot about my capabilities. I'm a strong bitch. I overcame. I fought even when every cell in my body wanted to collapse and stop. I'm happy it came to surgery too. No more biologics being pumped into me. My hair is pretty much grown in from all of it falling out from steroids. The meds always scared me more than being gutted. Truly. I don't think there is anything that can scare me anymore.
Back to Awareness week! Purple is the awareness color for IBD. I've made sure to rock my purple daily. Here I am for the week. ;-) Enjoy.
Listen to your bodies everyone. You know when something is off, and not normal. Don't wait. It won't hurt to get tested or checked out. It can hurt to wait. Take care of your body. Be your own advocate and cheerleader. Speak up about your journey and battles. You never know who it may help.
XOXO

Day #1. Great Bowel Movement shirt, CCFA bracelet, Girls w Guts bracelet

Day #2 Purple nails.

Day #3 I had a rough couple nights.  I was very crabby.  Still in purple. 

Today, day #4.Weirdo! No bangs. I hate me without bangs now. Still exhausted. Up til 4am.

This, that and the other..

I want to start the blog off by saying that we have been in the upper 90s and this week going into our first week of triple digit temps. So what happened today?? The air conditioner for the 2nd floor stopped working. Naturally. It's 92 degrees upstairs. Luckily, the downstairs A/C is still working so we may be blowing up an air mattress tonight... I can't wait. I'm sleeping like crap enough...why not spice things up with an air mattress!!!
I'm currently shopping for a swimsuit. I guess a one piece. Or a tankini. I have no idea...I can't keep taking #1 to the pool and roasting. My new shipment of small bags comes tomorrow and I'm hoping they will work well with a swimsuit. This will be interesting. They are basically a disposable...they can't be emptied, just tossed out. Which is fine by me. Less work. But being the recycler that I am, it makes me cringe a bit. I'll have to get over it. My legs are completely albino looking too. I will probably blind half the people at the pool.
Things are going pretty well with the exception that I'm still slightly anemic and apparently hypoglycemic. My glucose was a 48 at last blood draw. Anything lower than 70 is bad. I'm not dehydrated which is surprising. I'm still having issues with lack of energy and feeling like I am going to black out. And it's always at the worst times, such as walking down the stairs. I've been afraid to go out and drive because of it. I got my glucose tested on Friday and it was 140 but I was STILL feeling like I was going to black out. So, I'm clueless. I've taken to eating lots of marshmallows, drinking sugary iced tea, and I'm sure my teeth hate me but it helps a bit.
Now- on to a very pressing issue- what to do with my hair? Stay blonde? Go darker maybe with some red? Grow it out, cut it more blunt? Keep the bangs??? The blonde is so damn high maintenance, but I feel like me that way. I like the bangs but think that bangs look better with dark hair. Maybe these decisions are keeping me up nights...that would explain a lot. Please feel free to comment with suggestions. I'm willing to give it a whirl! This is the mess I'm dealing with now----->

Things have been chugging along colon-free. I am stil struggling with dealing with the stoma and the bag issues. It really is such a pain and so gross. The most I can get is 4 days out of the wafer before it leaks. Today was day 4 for my last one, and I woke up at 6am with it creeping under the adhesive. Kind of annoying since Hubs and I stayed up watching TV until about 2am. I was NOT happy to have to shower and deal with the bag drama at 6am. Blah.
My teeny little stoma has shrunk to 3/4 of an inch. If it gets any smaller I'll have to order children's ostomy supplies. Not kidding. 3/4 of an inch is the smallest I can find for wafers in the catalog. I've got skinny guts. Ha...
#2 is zooming all over the place. It's hilarious. her personality has really started to come out the last few weeks and she's a total goofball. Not surprising. We had no chance of her being boring or "normal" with the genetic combination she got. She'll be fluent in sarcasm in no time. ;-D

All in all things have been good. The issues I'm still having are minor enough where I'm not in misery. They are more of an inconvenience than anything. I would like to get the hell out of dodge but that's not going to happen yet. Traveling anemic and dehydrated with low blood sugar sounds like a typical recipe for disaster. I don't need the drama.

On a different, weird note, today marks 2 years that I stopped working. It doesn't seem that long because being sick kinda takes the fun out of all that free time. I guess I'm reflecting and remembering mostly  because how it ended still stings. There is nothing worse than thinking you are doing the right thing, only to have the rug pulled out from under you by by people who aren't playing by the rules and have something to hide. Luckily, the people in the wrong ended up losing their jobs, but not before I was canned to protect the screw ups(and other inappropriate things) of someone else. I'd like to imagine I at least got the ball rolling in getting rid of those people who were not doing their jobs.
Either way, I paid for that which was unfortunate since I loved my job. I thought I was pretty good at it too. =(  If I had the energy, and didn't have health issues nonstop I would have pursued them legally. I just never had the motivation. Taking care of myself and my family meant more than suing the shit out of a pretty large company. I think the stress of that would have impacted my health negatively and I just couldn't afford that. Sometimes people get away with stuff. Sometimes I wish I had never had that meeting and had just kept my mouth shut. But I couldn't. I did it for my peers and hopefully now they are doing better because I "took one for the team". I miss many people and am glad for social media that I can still connect with many of them. Mostly, I miss loving something AND being good at it AND getting paid for it. I'm at the point now, at almost 35, trying to plan something new, and find a new way. It's difficult when every time you gain some momentum, a health issue knocks you back a few steps. I'm not getting any younger and want to take my life over again. It's going to take a bit longer, but hopefully, that day will come soon enough.
Thanks for reading. Hope everyone had a great weekend. Wish me luck on this bathing suit hunt. Yikes. ;-)

I want to start the blog off by saying that we have been in the upper 90s and this week going into our first week of triple digit temps. So what happened today?? The air conditioner for the 2nd floor stopped working. Naturally. It's 92 degrees upstairs. Luckily, the downstairs A/C is still working so we may be blowing up an air mattress tonight... I can't wait. I'm sleeping like crap enough...why not spice things up with an air mattress!!!
I'm currently shopping for a swimsuit. I guess a one piece. Or a tankini. I have no idea...I can't keep taking #1 to the pool and roasting. My new shipment of small bags comes tomorrow and I'm hoping they will work well with a swimsuit. This will be interesting. They are basically a disposable...they can't be emptied, just tossed out. Which is fine by me. Less work. But being the recycler that I am, it makes me cringe a bit. I'll have to get over it. My legs are completely albino looking too. I will probably blind half the people at the pool.
Things are going pretty well with the exception that I'm still slightly anemic and apparently hypoglycemic. My glucose was a 48 at last blood draw. Anything lower than 70 is bad. I'm not dehydrated which is surprising. I'm still having issues with lack of energy and feeling like I am going to black out. And it's always at the worst times, such as walking down the stairs. I've been afraid to go out and drive because of it. I got my glucose tested on Friday and it was 140 but I was STILL feeling like I was going to black out. So, I'm clueless. I've taken to eating lots of marshmallows, drinking sugary iced tea, and I'm sure my teeth hate me but it helps a bit.
Now- on to a very pressing issue- what to do with my hair? Stay blonde? Go darker maybe with some red? Grow it out, cut it more blunt? Keep the bangs??? The blonde is so damn high maintenance, but I feel like me that way. I like the bangs but think that bangs look better with dark hair. Maybe these decisions are keeping me up nights...that would explain a lot. Please feel free to comment with suggestions. I'm willing to give it a whirl! This is the mess I'm dealing with now----->

Things have been chugging along colon-free. I am stil struggling with dealing with the stoma and the bag issues. It really is such a pain and so gross. The most I can get is 4 days out of the wafer before it leaks. Today was day 4 for my last one, and I woke up at 6am with it creeping under the adhesive. Kind of annoying since Hubs and I stayed up watching TV until about 2am. I was NOT happy to have to shower and deal with the bag drama at 6am. Blah.
My teeny little stoma has shrunk to 3/4 of an inch. If it gets any smaller I'll have to order children's ostomy supplies. Not kidding. 3/4 of an inch is the smallest I can find for wafers in the catalog. I've got skinny guts. Ha...
#2 is zooming all over the place. It's hilarious. her personality has really started to come out the last few weeks and she's a total goofball. Not surprising. We had no chance of her being boring or "normal" with the genetic combination she got. She'll be fluent in sarcasm in no time. ;-D

All in all things have been good. The issues I'm still having are minor enough where I'm not in misery. They are more of an inconvenience than anything. I would like to get the hell out of dodge but that's not going to happen yet. Traveling anemic and dehydrated with low blood sugar sounds like a typical recipe for disaster. I don't need the drama.

On a different, weird note, today marks 2 years that I stopped working. It doesn't seem that long because being sick kinda takes the fun out of all that free time. I guess I'm reflecting and remembering mostly  because how it ended still stings. There is nothing worse than thinking you are doing the right thing, only to have the rug pulled out from under you by by people who aren't playing by the rules and have something to hide. Luckily, the people in the wrong ended up losing their jobs, but not before I was canned to protect the screw ups(and other inappropriate things) of someone else. I'd like to imagine I at least got the ball rolling in getting rid of those people who were not doing their jobs.
Either way, I paid for that which was unfortunate since I loved my job. I thought I was pretty good at it too. =(  If I had the energy, and didn't have health issues nonstop I would have pursued them legally. I just never had the motivation. Taking care of myself and my family meant more than suing the shit out of a pretty large company. I think the stress of that would have impacted my health negatively and I just couldn't afford that. Sometimes people get away with stuff. Sometimes I wish I had never had that meeting and had just kept my mouth shut. But I couldn't. I did it for my peers and hopefully now they are doing better because I "took one for the team". I miss many people and am glad for social media that I can still connect with many of them. Mostly, I miss loving something AND being good at it AND getting paid for it. I'm at the point now, at almost 35, trying to plan something new, and find a new way. It's difficult when every time you gain some momentum, a health issue knocks you back a few steps. I'm not getting any younger and want to take my life over again. It's going to take a bit longer, but hopefully, that day will come soon enough.
Thanks for reading. Hope everyone had a great weekend. Wish me luck on this bathing suit hunt. Yikes. ;-)