Just some bitching.. I'm fired up!

I'm feeling crabby today so I'm going to do some bitching.

First of all, got a second denial letter from SSDI. It is a good thing they aren't a bank because you'd never be able to withdraw your own money. Once again they said that in all the time I was sick, being hospitalized, on tons of meds, getting blood transfusions, in severe pain, in the bathroom 20+ times a day, and requiring an entire organ to be removed, I should have had no problem maintaining FT work. And as long as I was following my doctors orders I was A okay. My doctor's orders weren't working, which is why the doctor's decided I needed to be gutted. Soooooo.... Riiiiggghhhtttttt... Delusional mother F*ckers. Mind you, I'm not applying for open ended disability. My attorney is seeking a closed window payment of the time I could not work from my first hospitalization until when I recover from this last surgery. I am well aware that I will be healthy enough to work after my recovery. In fact, you bureaucratic assholes, I welcome it. But don't tell me that I could have been working all this time no problem. I couldn't have and I didn't. But it's fine... you just hang on to MY MONEY that I have been paying into since I was 16 when I got my first job. You know, paying into it in case I ever need it. Like RIGHT NOW!!!!!!!! Yes, instead keep denying me...so now we need to appeal it, and go to court and take up court time and government employee time to go to court. That sounds like a much more efficient plan than JUST GIVING ME A SHORT TERM stipend of MY MONEY because I was/is unable to work due to a disease. Healthy people do not need organs removed in order to improve their life and thrive. AARRGHHHH...... So irritated. Seriously. HEADS UP THEIR ASSES.

My second rant comes a discussions going on in a Facebook group I'm in for Crohn's/Colitis. Basically it's discussing how people think they can give advice on how we IBD'ers can 'cure' ourselves and get rid of our symptoms. Now, that being said, we all know the average person is basically uninformed about general biology. The reason I make that statement is because it is proven to me again and again on a daily basis. People are ignorant. If they weren't, companies wouldn't be making millions of dollars off of people for quick gimmick weight loss pills/diets, or fat burning cream you rub on at night. Yeah, your body just doesn't work that way. So, how is it, that the average person suddenly becomes a digestive expert when you have IBD? Hmmmm.... that's weird? Oh, I need to lose weight and my disease will go away? Oh, I need to exercise more and my disease will go away? Oh, I need to watch my diet and my disease will go away? Such an interesting school of thought. But, ahh no. My disease went away when they TOOK THE DISEASED ORGAN OUT!!!!!!! People- keep your mouths shut about shit you know nothing about. You are not well read on autoimmune diseases (and NO they are NOT the same thing as AIDS so that's a great response when I tell you I have an autoimmune disease. Clever). Go back to being experts on the Kardashians, and 'Toddlers and Tiaras'. My GI spent years trying to get my disease under control with no success. But suddenly, you, who probably doesn't know the first thing about how your colon works, is going to give advice on my illness. The illness I'm living with, and have spent countless days reading and researching what was going on with my body. Reading about and trying every drug out there, who's side effects generally are worse than me dealing with UC. Yes, I'm sure if I ate more veggies I'd be swell. Too bad roughage is like the archenemy of IBD. But thanks! I'll consider your suggestion of green leafy veggies that will tear the shit out of my insides and make me run to the bathroom in 20 minutes where I will spend 3 days bleeding out my ass from your salad suggestion. Yes, by all means, preach it. It might work. Doubtful. You know what WOULD work?! If you listened to what an IBD'er is saying. If you didn't cut them off and say you understand b/c Taco Bell makes you shit your brains out. And maybe, just maybe, if you gave half a shit, you'd do some reading. Get some general knowledge about the human body. It is actually quite helpful to know how your body works, sick or not. But hey, what do I know. I just live it.

That is all.. I had more but I'm too crabby to even listen to myself rant. Maybe I should take that leftover Valium from my hypaque enema. Still having weird discomfort from that a week later. Discomfort is the wrong word.... How can I put this simply..... my ass hurts. Bad. You people with your anal sex are completely out of your effin mind. You must be masochists. Seriously. OMG.
Ugh--- ok, I'm sick of myself right now. Thanks for listening and sorry for the potty mouth today. I try to hide my sailor language tendencies online, but today it wasn't happening.
On the positive I got my haircut yesterday and I feel like a million bucks. Maybe 2 mill.
Cheers everyone.

I'm feeling crabby today so I'm going to do some bitching.

First of all, got a second denial letter from SSDI. It is a good thing they aren't a bank because you'd never be able to withdraw your own money. Once again they said that in all the time I was sick, being hospitalized, on tons of meds, getting blood transfusions, in severe pain, in the bathroom 20+ times a day, and requiring an entire organ to be removed, I should have had no problem maintaining FT work. And as long as I was following my doctors orders I was A okay. My doctor's orders weren't working, which is why the doctor's decided I needed to be gutted. Soooooo.... Riiiiggghhhtttttt... Delusional mother F*ckers. Mind you, I'm not applying for open ended disability. My attorney is seeking a closed window payment of the time I could not work from my first hospitalization until when I recover from this last surgery. I am well aware that I will be healthy enough to work after my recovery. In fact, you bureaucratic assholes, I welcome it. But don't tell me that I could have been working all this time no problem. I couldn't have and I didn't. But it's fine... you just hang on to MY MONEY that I have been paying into since I was 16 when I got my first job. You know, paying into it in case I ever need it. Like RIGHT NOW!!!!!!!! Yes, instead keep denying me...so now we need to appeal it, and go to court and take up court time and government employee time to go to court. That sounds like a much more efficient plan than JUST GIVING ME A SHORT TERM stipend of MY MONEY because I was/is unable to work due to a disease. Healthy people do not need organs removed in order to improve their life and thrive. AARRGHHHH...... So irritated. Seriously. HEADS UP THEIR ASSES.

My second rant comes a discussions going on in a Facebook group I'm in for Crohn's/Colitis. Basically it's discussing how people think they can give advice on how we IBD'ers can 'cure' ourselves and get rid of our symptoms. Now, that being said, we all know the average person is basically uninformed about general biology. The reason I make that statement is because it is proven to me again and again on a daily basis. People are ignorant. If they weren't, companies wouldn't be making millions of dollars off of people for quick gimmick weight loss pills/diets, or fat burning cream you rub on at night. Yeah, your body just doesn't work that way. So, how is it, that the average person suddenly becomes a digestive expert when you have IBD? Hmmmm.... that's weird? Oh, I need to lose weight and my disease will go away? Oh, I need to exercise more and my disease will go away? Oh, I need to watch my diet and my disease will go away? Such an interesting school of thought. But, ahh no. My disease went away when they TOOK THE DISEASED ORGAN OUT!!!!!!! People- keep your mouths shut about shit you know nothing about. You are not well read on autoimmune diseases (and NO they are NOT the same thing as AIDS so that's a great response when I tell you I have an autoimmune disease. Clever). Go back to being experts on the Kardashians, and 'Toddlers and Tiaras'. My GI spent years trying to get my disease under control with no success. But suddenly, you, who probably doesn't know the first thing about how your colon works, is going to give advice on my illness. The illness I'm living with, and have spent countless days reading and researching what was going on with my body. Reading about and trying every drug out there, who's side effects generally are worse than me dealing with UC. Yes, I'm sure if I ate more veggies I'd be swell. Too bad roughage is like the archenemy of IBD. But thanks! I'll consider your suggestion of green leafy veggies that will tear the shit out of my insides and make me run to the bathroom in 20 minutes where I will spend 3 days bleeding out my ass from your salad suggestion. Yes, by all means, preach it. It might work. Doubtful. You know what WOULD work?! If you listened to what an IBD'er is saying. If you didn't cut them off and say you understand b/c Taco Bell makes you shit your brains out. And maybe, just maybe, if you gave half a shit, you'd do some reading. Get some general knowledge about the human body. It is actually quite helpful to know how your body works, sick or not. But hey, what do I know. I just live it.

That is all.. I had more but I'm too crabby to even listen to myself rant. Maybe I should take that leftover Valium from my hypaque enema. Still having weird discomfort from that a week later. Discomfort is the wrong word.... How can I put this simply..... my ass hurts. Bad. You people with your anal sex are completely out of your effin mind. You must be masochists. Seriously. OMG.
Ugh--- ok, I'm sick of myself right now. Thanks for listening and sorry for the potty mouth today. I try to hide my sailor language tendencies online, but today it wasn't happening.
On the positive I got my haircut yesterday and I feel like a million bucks. Maybe 2 mill.
Cheers everyone.

Back to reality...

Well hello Blogger land. We are back from our mini vacation and the kids started school today! The trip was excellent. No mishaps. I was like a normal person. Well..for me anyway. We left Dallas on Friday at around 6am. Outside of Austin we stopped at this underground cavern tour. It went 70 feet underground. It was amazing. What's beneath the earth's surface that you don't even realize is incredible. What's more incredible is that I could go on an hour long tour underground without hesitation. No toilets down there. I would have missed out prior to my colectomy. Now, I'd love to do it again! Life is real again!!
We went on to the state capital in Austin and then got into San Antonio around dinnertime. Friday was a long and full day. We saw a ton in 12 hours and drove 300+ miles! Saturday we spent at SeaWorld. The only thing I didn't participate in was the water rides. Getting my wafer wet and not being able to dry it stopped me. I didn't feel like dealing with another yeast infection. The day was awesome. Fed and petted the dolphins, saw the coral reef get fed by the SCUBA lady. Pic of us at the end of the day--->

 ..... I over packed my gear and used less than I thought but better to be over prepared! No sunscreen fails either. Everyone survived lobster free!
If you are ever in SA hit up Riverwalk. Very cool concept. Restaurants and shops and beautiful walkways and greenery all along the river through the city. Look it up. I loved it. Wish we had time for the boat ride though. Only disappointment.
Sunday we saw the Alamo and headed home. My bathroom breaks didn't hold us up! Yah!! I had zero anxiety and stress about the situation. All in all- wonderful. I seriously wouldn't have been able to do this in May and before. Now- anything I want to do is available to me!
Such a great feeling. Now I just have to conquer the TSA! Piece of cake!
Seeing the surgeon Thursday to schedule my reversal! So excited! It will feel good to have a date in the books. I'll keep everyone posted as you know.
Oh- new pic of how beautiful my belly and stoma looks! Yes, beautiful and perfect!

Here are some random pics of the trip. I'm posting from my phone so I hope it works!!



Part of the Riverwalk in San Antonio. So amazing.





Underground cavern



The Alamo. So small in person.



#1 and me on the trip.

We fed the dolphins at SeaWorld. Very cool. 

#1 and me after dinner at Riverwalk.

Well hello Blogger land. We are back from our mini vacation and the kids started school today! The trip was excellent. No mishaps. I was like a normal person. Well..for me anyway. We left Dallas on Friday at around 6am. Outside of Austin we stopped at this underground cavern tour. It went 70 feet underground. It was amazing. What's beneath the earth's surface that you don't even realize is incredible. What's more incredible is that I could go on an hour long tour underground without hesitation. No toilets down there. I would have missed out prior to my colectomy. Now, I'd love to do it again! Life is real again!!
We went on to the state capital in Austin and then got into San Antonio around dinnertime. Friday was a long and full day. We saw a ton in 12 hours and drove 300+ miles! Saturday we spent at SeaWorld. The only thing I didn't participate in was the water rides. Getting my wafer wet and not being able to dry it stopped me. I didn't feel like dealing with another yeast infection. The day was awesome. Fed and petted the dolphins, saw the coral reef get fed by the SCUBA lady. Pic of us at the end of the day--->

 ..... I over packed my gear and used less than I thought but better to be over prepared! No sunscreen fails either. Everyone survived lobster free!
If you are ever in SA hit up Riverwalk. Very cool concept. Restaurants and shops and beautiful walkways and greenery all along the river through the city. Look it up. I loved it. Wish we had time for the boat ride though. Only disappointment.
Sunday we saw the Alamo and headed home. My bathroom breaks didn't hold us up! Yah!! I had zero anxiety and stress about the situation. All in all- wonderful. I seriously wouldn't have been able to do this in May and before. Now- anything I want to do is available to me!
Such a great feeling. Now I just have to conquer the TSA! Piece of cake!
Seeing the surgeon Thursday to schedule my reversal! So excited! It will feel good to have a date in the books. I'll keep everyone posted as you know.
Oh- new pic of how beautiful my belly and stoma looks! Yes, beautiful and perfect!

Here are some random pics of the trip. I'm posting from my phone so I hope it works!!



Part of the Riverwalk in San Antonio. So amazing.





Underground cavern



The Alamo. So small in person.



#1 and me on the trip.

We fed the dolphins at SeaWorld. Very cool. 

#1 and me after dinner at Riverwalk.

Life is good!!

I am happy to report that my J Pouch has no leaks!! It looks like it healed up perfectly internally!! Yah!! The Hypaque enema was not the most pleasant experience but definitely not the worst I've been through. The 5mg of Valium may have had a lot to do with my calm. It was pretty cool because I got to watch it on the screen. So weird to watch what I could feel internally. So now that that's out of the way we are moving on!!! I could get in to have my reversal done September 14th, but seeing as I'm flying September 25th that would be pushing it. As badly as I want it done and not deal with the TSA and my bag and supplies, I also want to enjoy myself in NY and pig out on some good food. Trying out a new J Pouch in that situation is not the best idea.
So it looks like the first week of October is feasible. My surgeon's scheduler said October is pretty open so in all honesty, if I wanted to go in the Friday after I get back I can. I see him the 30th so I'll get it all ironed out. It is closing in fast. Let's hope this J Pouch likes me and I can move forward without any more issues.
We are leaving tomorrow for a big Griswald road trip to San Antonio to go to SeaWorld and whatnot. I'm excited. I love SeaWorld and I have never been to San Antonio and love to go explore new cities. What's super awesome is that I can actually get in a car and drive 5 hours without hesitation. Without stopped quite possibly every 15 minutes, or even worse, not stopping in time! I love it. I used to be nervous to drive 30 minutes. Life is so different with that rotten colon out of my life. I'm so glad I dumped him. That relationship was going nowhere!!
So I am about to pack all my supplies and and make sure we have everything ready tonight as we are heading out at 6am!! Yikes!
I will let you know how it all goes when we get back. Hopefully no leaks at the Alamo or bag explosions with Shamu!! Looking forward to the mini-escape!
Have a great weekend everyone!

I am happy to report that my J Pouch has no leaks!! It looks like it healed up perfectly internally!! Yah!! The Hypaque enema was not the most pleasant experience but definitely not the worst I've been through. The 5mg of Valium may have had a lot to do with my calm. It was pretty cool because I got to watch it on the screen. So weird to watch what I could feel internally. So now that that's out of the way we are moving on!!! I could get in to have my reversal done September 14th, but seeing as I'm flying September 25th that would be pushing it. As badly as I want it done and not deal with the TSA and my bag and supplies, I also want to enjoy myself in NY and pig out on some good food. Trying out a new J Pouch in that situation is not the best idea.
So it looks like the first week of October is feasible. My surgeon's scheduler said October is pretty open so in all honesty, if I wanted to go in the Friday after I get back I can. I see him the 30th so I'll get it all ironed out. It is closing in fast. Let's hope this J Pouch likes me and I can move forward without any more issues.
We are leaving tomorrow for a big Griswald road trip to San Antonio to go to SeaWorld and whatnot. I'm excited. I love SeaWorld and I have never been to San Antonio and love to go explore new cities. What's super awesome is that I can actually get in a car and drive 5 hours without hesitation. Without stopped quite possibly every 15 minutes, or even worse, not stopping in time! I love it. I used to be nervous to drive 30 minutes. Life is so different with that rotten colon out of my life. I'm so glad I dumped him. That relationship was going nowhere!!
So I am about to pack all my supplies and and make sure we have everything ready tonight as we are heading out at 6am!! Yikes!
I will let you know how it all goes when we get back. Hopefully no leaks at the Alamo or bag explosions with Shamu!! Looking forward to the mini-escape!
Have a great weekend everyone!

So Giddy!! Kinda...

Well, well- I saw my surgeon today. Good news! We are moving ahead with the enema thing(if enemas can be good news), to check if my j pouch healed correctly and there are no issues. I'm very anxious and stressed about it, not gonna lie. Someone giving you an enema is not pleasant. It out right sucks. IBD sucks because it's generally a part of some treatment plans, or in my case, was needed when I was admitted and required a scope ASAP. No time to prep!! I'd take prep over a forced water enema while bleeding, and in pain ANYDAY!!!
So, as exciting as that is because it's one step closer to my reversal, it is still horrifying. Don't worry. I got my 5mg Valium script all ready to go to calm me the eff down. So, assuming everything is just swell in my newly, custom built 'semi-colon', we are on to scheduling surgery!! Humpty Dumpty Lisa is going to get put back together. Rock on!
Ideally, he'll be able to fit me into his schedule the first week of September so I can travel sans bag and not deal with the TSA(I have a previous blog about this concern).  Let's get real...there's no way that's going to happen. He's pretty busy. If I can't have surgery that first week than it will be after my trip. It won't kill me to wait, but I was looking forward to traveling without all my ostomy gear, in addition to, two kids. It would have been a nice early birthday present to be put back together!
So I haven't blogged in a bit as summer is winding down. Trying to fit some stuff in now that it's not 105 everyday. The 90s feel refreshing! Have had some great T storms. I never liked rain until I moved here. I love when it absolutely pours!
Here was the sunset the other night through the storm clouds.

It was a pretty cool sky. One of these nights I'll pull the serious camera out and try to catch some lightening. I swear.
It's so nice to feel 'normal'. My surgeon today said I looked so healthy. I feel healthy. I went for a walk/run the other morning. I seriously almost died. Full on respiratory failure pushing a jogging stroller. I'm such an out of shape fatty. I hurt for two days. It was *awesome*.  Once the next surgery is done I need to get on track.
I'm already stressed about my trip to NY. Vacation shouldn't be stressful leading up to it. I don't know where we are staying. Carseat and #2 sleeping arrangements are still up in the air. No plans are made. I have very little time to fit in what I want to do and who I want to see. STRESSED. Something's not right with that scenario. Hoping it all works out and comes together. I'm a planner. I can't stand not knowing what's going on. Makes me nuts.
We went to the pool the other morning before it got too hot (that might not make sense to a lot of people but 100 degrees is too hot to swim. Seriously). It was nice. #2 loves the water. Was testing out what # can do because I'm taking her to try out for the McKinney swim club. It's the one activity she really really enjoys and she's pretty good so I need to move on it. She's gotten LAZY! It's obnoxious.
Here's me at the pool, rocking my ostomy bag, decorated and in your face!!

It's amazing what a little zebra print duck tape will do! ;-) I am pasty looking... but I'm actually tan. Luckily I'm not anemic anymore because I can't afford to lose anymore color!
Ok, I'm off to watch a movie with my man.
Be confident. Don't let the little things get you down. Give yourself some credit and be your own cheerleader.
And to all the young(er) girls--- you are not fat. You are not ugly. One day when you are *old* and 34 like me, you will wonder when you got fine lines and why in the world you hated your body when you were 20! Enjoy it. Life is good. You're too young to hate what you see in the mirror. Love yourself or no one will love you like you deserve to be loved.
That's all. I'm out.
XO

Well, well- I saw my surgeon today. Good news! We are moving ahead with the enema thing(if enemas can be good news), to check if my j pouch healed correctly and there are no issues. I'm very anxious and stressed about it, not gonna lie. Someone giving you an enema is not pleasant. It out right sucks. IBD sucks because it's generally a part of some treatment plans, or in my case, was needed when I was admitted and required a scope ASAP. No time to prep!! I'd take prep over a forced water enema while bleeding, and in pain ANYDAY!!!
So, as exciting as that is because it's one step closer to my reversal, it is still horrifying. Don't worry. I got my 5mg Valium script all ready to go to calm me the eff down. So, assuming everything is just swell in my newly, custom built 'semi-colon', we are on to scheduling surgery!! Humpty Dumpty Lisa is going to get put back together. Rock on!
Ideally, he'll be able to fit me into his schedule the first week of September so I can travel sans bag and not deal with the TSA(I have a previous blog about this concern).  Let's get real...there's no way that's going to happen. He's pretty busy. If I can't have surgery that first week than it will be after my trip. It won't kill me to wait, but I was looking forward to traveling without all my ostomy gear, in addition to, two kids. It would have been a nice early birthday present to be put back together!
So I haven't blogged in a bit as summer is winding down. Trying to fit some stuff in now that it's not 105 everyday. The 90s feel refreshing! Have had some great T storms. I never liked rain until I moved here. I love when it absolutely pours!
Here was the sunset the other night through the storm clouds.

It was a pretty cool sky. One of these nights I'll pull the serious camera out and try to catch some lightening. I swear.
It's so nice to feel 'normal'. My surgeon today said I looked so healthy. I feel healthy. I went for a walk/run the other morning. I seriously almost died. Full on respiratory failure pushing a jogging stroller. I'm such an out of shape fatty. I hurt for two days. It was *awesome*.  Once the next surgery is done I need to get on track.
I'm already stressed about my trip to NY. Vacation shouldn't be stressful leading up to it. I don't know where we are staying. Carseat and #2 sleeping arrangements are still up in the air. No plans are made. I have very little time to fit in what I want to do and who I want to see. STRESSED. Something's not right with that scenario. Hoping it all works out and comes together. I'm a planner. I can't stand not knowing what's going on. Makes me nuts.
We went to the pool the other morning before it got too hot (that might not make sense to a lot of people but 100 degrees is too hot to swim. Seriously). It was nice. #2 loves the water. Was testing out what # can do because I'm taking her to try out for the McKinney swim club. It's the one activity she really really enjoys and she's pretty good so I need to move on it. She's gotten LAZY! It's obnoxious.
Here's me at the pool, rocking my ostomy bag, decorated and in your face!!

It's amazing what a little zebra print duck tape will do! ;-) I am pasty looking... but I'm actually tan. Luckily I'm not anemic anymore because I can't afford to lose anymore color!
Ok, I'm off to watch a movie with my man.
Be confident. Don't let the little things get you down. Give yourself some credit and be your own cheerleader.
And to all the young(er) girls--- you are not fat. You are not ugly. One day when you are *old* and 34 like me, you will wonder when you got fine lines and why in the world you hated your body when you were 20! Enjoy it. Life is good. You're too young to hate what you see in the mirror. Love yourself or no one will love you like you deserve to be loved.
That's all. I'm out.
XO

I seriously forgot...I like that.

The last few days I've had quite a few moments where I have forgotten about my ostomy and my bag. Granted, it has been when the bag was empty so there was no pull or weight to it on my abdomen. But truly, my body was not in the forefront of my mind on various occasions. To 'normal' people it probably doesn't mean much, but as a sick person who for almost 4 years, has been so physically self aware at all times it's unbelievable. Everything you see, and do is secondary to how you feel.  Let me explain. For going on 4 years I have 24/7 been keenly aware of my body, my intestinal processes, my pain level and the proximity to the nearest bathroom. For the most part I knew exactly what part of my guts were working, when. Who can say that? Even at night when I slept, the pain from my disease has crept in to my dreams. If I went to bed pain free, I would dream I was being stabbed or hurt and in severe pain, and wake up in pain. It had started while I was asleep. I guess my body wanted me to pop a pain pill!!
 Going to a mall was very often, not an option, because we all know you need to take a cab to the bathrooms in malls and department stores. They are always half a mile a way. When you have IBD that is a half mile too far. Sometimes, 2 feet is too far, too late. Every decision I made during that time was weighed and measured carefully in terms of the situation. Car ride? How far, how long? Go for a walk? Sure, up and down our block because if I'm too far it might be a disaster. A movie? Nah- I'll rent that shit!! Theatre bathrooms are always gross!!The smallest and most basic activities and decisions were shadowed by how bad my flare was that day. It controlled my life. If you could even say I had a life.
 When you are chronically ill you are aware of the most minuscule bump in the road while driving. I seriously used to get shooting intestinal pains from it. The bounce. The seatbelt. I've had canker sores so bad that it was all I could do all day was be overwhelmed by the pain. I couldn't think, or accomplish anything. Forget speaking. Anytime I would attempt to eat out it was a game of what would work, and what would kill me. Many times I would not make it home after eating out. Hell, I wouldn't make it out of the restaurant. Eating was Russian Roulette.
I had never been a self conscious person, but being sick gave that to me as a big lame gift. I was self conscious when I was 98lbs, underweight and bony. I had bruises from IVs and I could feel every eye wondering what my story was. I was self conscious when I was on steroids and then my weight swung the other way and I was the heaviest I had ever been. Bigger than when I was pregnant. My face blew up until I would stare at myself and not know who I was. I was self conscious of how uncomfortable I was in that body. It didn't feel like mine. I felt trapped. Even now, I'm a little lighter than my normal, but I am aware (not self conscious) everyday of my bag and my ostomy. Especially when it's burning or itching. I feel it puff up and alter how my clothes fit. If I'm wearing the belt, I feel that especially in the heat.
All this is why it has been so amazing that the fact that I have an ostomy has disappeared from my mind, even for a second, more than once. It's not like I forgot, it's just that I stopped being hyper aware for that moment. I think it is because I have my life back, for the most part. The pain is gone, the fatigue, the arthritis, the canker sores, the blood loss, the urgency. Gone. Life is as it was. It's like I never had UC. In those few fleeting moments I let it go. The history disappeared. Looking at my body right now is the only way I know I was that sick. Looking at the scar and ostomy. Otherwise, it's like my health hit rewind. I'm not 100%, don't get me wrong, but if I had to stay at this point and this moment I would be happy.
It is incredible to think that a few weeks ago I was crying and frustrated and not knowing if I could make it. Now I could probably change my wafer and bag in the dark with one hand. No kidding. I don't even think about it anymore.
I've learned my self awareness and self consciousness are not always partners in crime. As I've gotten healthier the self consciousness has dropped off. Even the physical awareness has tapered. I still know more about guts, autoimmune disease and meds than I ever imagined I would but at least for the moment,
I have more a level playing field. My guts (or lack of) don't determine my days anymore. I can focus on real life stuff, and not the pain. I don't have to be afraid to be across the mall from the restroom. I'm not afraid to go out to dinner or sit through a 3 hour class.
I could easily still be fighting, and losing. I was losing physically, mentally and emotionally. I was just barely going through days. I wasn't enjoying them. I couldn't enjoy them. Now, I'm taking back over. Me forgetting my Stupid Stoma for a moment showed me that. I've got more going on than my ailments. They ride shotgun now. I'm back behind the wheel. =-)

Healing is a matter of time, but it is sometimes also a matter of opportunity.
Hippocrates

Me, not aware of my stoma or bag. For the moment! ------->

The last few days I've had quite a few moments where I have forgotten about my ostomy and my bag. Granted, it has been when the bag was empty so there was no pull or weight to it on my abdomen. But truly, my body was not in the forefront of my mind on various occasions. To 'normal' people it probably doesn't mean much, but as a sick person who for almost 4 years, has been so physically self aware at all times it's unbelievable. Everything you see, and do is secondary to how you feel.  Let me explain. For going on 4 years I have 24/7 been keenly aware of my body, my intestinal processes, my pain level and the proximity to the nearest bathroom. For the most part I knew exactly what part of my guts were working, when. Who can say that? Even at night when I slept, the pain from my disease has crept in to my dreams. If I went to bed pain free, I would dream I was being stabbed or hurt and in severe pain, and wake up in pain. It had started while I was asleep. I guess my body wanted me to pop a pain pill!!
 Going to a mall was very often, not an option, because we all know you need to take a cab to the bathrooms in malls and department stores. They are always half a mile a way. When you have IBD that is a half mile too far. Sometimes, 2 feet is too far, too late. Every decision I made during that time was weighed and measured carefully in terms of the situation. Car ride? How far, how long? Go for a walk? Sure, up and down our block because if I'm too far it might be a disaster. A movie? Nah- I'll rent that shit!! Theatre bathrooms are always gross!!The smallest and most basic activities and decisions were shadowed by how bad my flare was that day. It controlled my life. If you could even say I had a life.
 When you are chronically ill you are aware of the most minuscule bump in the road while driving. I seriously used to get shooting intestinal pains from it. The bounce. The seatbelt. I've had canker sores so bad that it was all I could do all day was be overwhelmed by the pain. I couldn't think, or accomplish anything. Forget speaking. Anytime I would attempt to eat out it was a game of what would work, and what would kill me. Many times I would not make it home after eating out. Hell, I wouldn't make it out of the restaurant. Eating was Russian Roulette.
I had never been a self conscious person, but being sick gave that to me as a big lame gift. I was self conscious when I was 98lbs, underweight and bony. I had bruises from IVs and I could feel every eye wondering what my story was. I was self conscious when I was on steroids and then my weight swung the other way and I was the heaviest I had ever been. Bigger than when I was pregnant. My face blew up until I would stare at myself and not know who I was. I was self conscious of how uncomfortable I was in that body. It didn't feel like mine. I felt trapped. Even now, I'm a little lighter than my normal, but I am aware (not self conscious) everyday of my bag and my ostomy. Especially when it's burning or itching. I feel it puff up and alter how my clothes fit. If I'm wearing the belt, I feel that especially in the heat.
All this is why it has been so amazing that the fact that I have an ostomy has disappeared from my mind, even for a second, more than once. It's not like I forgot, it's just that I stopped being hyper aware for that moment. I think it is because I have my life back, for the most part. The pain is gone, the fatigue, the arthritis, the canker sores, the blood loss, the urgency. Gone. Life is as it was. It's like I never had UC. In those few fleeting moments I let it go. The history disappeared. Looking at my body right now is the only way I know I was that sick. Looking at the scar and ostomy. Otherwise, it's like my health hit rewind. I'm not 100%, don't get me wrong, but if I had to stay at this point and this moment I would be happy.
It is incredible to think that a few weeks ago I was crying and frustrated and not knowing if I could make it. Now I could probably change my wafer and bag in the dark with one hand. No kidding. I don't even think about it anymore.
I've learned my self awareness and self consciousness are not always partners in crime. As I've gotten healthier the self consciousness has dropped off. Even the physical awareness has tapered. I still know more about guts, autoimmune disease and meds than I ever imagined I would but at least for the moment,
I have more a level playing field. My guts (or lack of) don't determine my days anymore. I can focus on real life stuff, and not the pain. I don't have to be afraid to be across the mall from the restroom. I'm not afraid to go out to dinner or sit through a 3 hour class.
I could easily still be fighting, and losing. I was losing physically, mentally and emotionally. I was just barely going through days. I wasn't enjoying them. I couldn't enjoy them. Now, I'm taking back over. Me forgetting my Stupid Stoma for a moment showed me that. I've got more going on than my ailments. They ride shotgun now. I'm back behind the wheel. =-)

Healing is a matter of time, but it is sometimes also a matter of opportunity.
Hippocrates

Me, not aware of my stoma or bag. For the moment! ------->

A Day in the Life....(one of my fave Beatles songs BTW)

Here are a bunch of random thoughts that have whizzed through my head today, in no particular order.

I need to blog. I need a pedicure. I miss working. I wish I was an editor. How do I get paid to blog? How do I get paid to shop? #1 is so stinking adorable I hope I never forget how cute she is. Hubs leg locked me and really hurt my shin. I need 53 right answers out of 70 to get an A in this class. Why did she bring donuts? This girl is so annoying I hope I never see her again. Yeah, right honey, he hasn't noticed you lost your engagement ring. Liar. I want to be a runner. It's too hot to run. Do any men read my blog? Shit, my home nurse comes in 15 minutes and the whole house is asleep. I should get a nose job. I should get lash extensions. I need a vacation. I'm going to grow my bangs out. I love my bangs. When did my hair get so thin? I need some Panera soup. I could take an all day nap and be ok. She always looks cute at 8am. I should use the gym at school. I need a tan. I like being pale. I should take #1 to the pool. Is #1 ever going to just listen and not debate everything? Holy shit she pisses me off. The dogs stink. I don't want to make dinner. Sure, grilled sausages are easy enough. I need to grow my hair out to do cute hair stuff. My hair looks better short. I should run early before it gets hot.  I can't believe I just forgot I have an ostomy and a bag. Thank god this class is over. This song is horrible. I feel ugly. My skin looks awesome. Maybe I'll win the lottery. Is there a mirror shortage in people's houses? Maybe I'll be a Paralegal. I always wanted to go to law school. I love Pinterest. I wish I was super crafty. I'm so boring. I need new clothes. My hair is so thin it's ridiculous. I need to start using my camera again. This heat sucks. I want to live by the beach. I want to go to the beach. I want a new tattoo. I'm getting old. My car is filthy. I should change my wafer. I should go shopping.  I kill every plant I own. Time to pull the dead rose bush. It's too hot to pull the dead rose bush. If I back into the neighbors trash cans and knock them over will they get the hint and bring them in? I need to read some Sherlock Holmes. I need some new pics of Violet at a year old. I love Pepsi. People should learn to spell. People should learn to drive. So happy to be home. My eyebrows look good. I love the Beastie Boys. Maybe I can be famous for no reason like all these no talent ass clowns. Mat is cute. I have bingo arm. I live on the surface of the sun. I'm pretty good at painting my nails. #1 is walking like an elephant up there. This headache won't stop. I need a girl's night pronto. I should go shopping for jeans. I can't wear jeans, it's 100 degrees out. I need to mail these books to Janelle. I'm an idiot. I'm a genius. What else can I sell on ebay? Oh good, the nurse can come tomorrow. Shut your dog up! I love Twitter. Hubs cracks me up. They forgot the lemon. Free soup tastes better than $5 soup. I'll make a list later of errands to run tomorrow. Morons!
My head is seriously going to explode. I love my Ray-Bans. Why is my effin head so small. #1's headband fits perfectly. I can not believe how thin my hair got. I'm going to need a wig. I should cut it off. WTF am I good at, seriously? I need gas already? I think I'm going to lose my mind. I don't get what Tumblr is. I love Instagram. Those meds jacked me up. I'm sick of being so rundown and weak. I hate what sickness did to my body. Why do they only make cool cases for iphones? I miss patio drinking. Shit, is that a canker sore? Shit. I'm starving. I ate way too much. I love bread. I wish it would rain again today. I could never have a car without a sunroof. I took one class and got an A. It's a 4.0! I need new underwear. I feel so lazy. This scar isn't so bad. Kinda looks like a worm. Violet walks like a drunk monkey. Do people still listen to the radio in the car? Why is this child obsessed with electrical cords. I'm so obnoxious. I'm so hilarious. Parking ramps freak me out. It's only 537? I'm so tired...... ;-)

Here are a bunch of random thoughts that have whizzed through my head today, in no particular order.

I need to blog. I need a pedicure. I miss working. I wish I was an editor. How do I get paid to blog? How do I get paid to shop? #1 is so stinking adorable I hope I never forget how cute she is. Hubs leg locked me and really hurt my shin. I need 53 right answers out of 70 to get an A in this class. Why did she bring donuts? This girl is so annoying I hope I never see her again. Yeah, right honey, he hasn't noticed you lost your engagement ring. Liar. I want to be a runner. It's too hot to run. Do any men read my blog? Shit, my home nurse comes in 15 minutes and the whole house is asleep. I should get a nose job. I should get lash extensions. I need a vacation. I'm going to grow my bangs out. I love my bangs. When did my hair get so thin? I need some Panera soup. I could take an all day nap and be ok. She always looks cute at 8am. I should use the gym at school. I need a tan. I like being pale. I should take #1 to the pool. Is #1 ever going to just listen and not debate everything? Holy shit she pisses me off. The dogs stink. I don't want to make dinner. Sure, grilled sausages are easy enough. I need to grow my hair out to do cute hair stuff. My hair looks better short. I should run early before it gets hot.  I can't believe I just forgot I have an ostomy and a bag. Thank god this class is over. This song is horrible. I feel ugly. My skin looks awesome. Maybe I'll win the lottery. Is there a mirror shortage in people's houses? Maybe I'll be a Paralegal. I always wanted to go to law school. I love Pinterest. I wish I was super crafty. I'm so boring. I need new clothes. My hair is so thin it's ridiculous. I need to start using my camera again. This heat sucks. I want to live by the beach. I want to go to the beach. I want a new tattoo. I'm getting old. My car is filthy. I should change my wafer. I should go shopping.  I kill every plant I own. Time to pull the dead rose bush. It's too hot to pull the dead rose bush. If I back into the neighbors trash cans and knock them over will they get the hint and bring them in? I need to read some Sherlock Holmes. I need some new pics of Violet at a year old. I love Pepsi. People should learn to spell. People should learn to drive. So happy to be home. My eyebrows look good. I love the Beastie Boys. Maybe I can be famous for no reason like all these no talent ass clowns. Mat is cute. I have bingo arm. I live on the surface of the sun. I'm pretty good at painting my nails. #1 is walking like an elephant up there. This headache won't stop. I need a girl's night pronto. I should go shopping for jeans. I can't wear jeans, it's 100 degrees out. I need to mail these books to Janelle. I'm an idiot. I'm a genius. What else can I sell on ebay? Oh good, the nurse can come tomorrow. Shut your dog up! I love Twitter. Hubs cracks me up. They forgot the lemon. Free soup tastes better than $5 soup. I'll make a list later of errands to run tomorrow. Morons!
My head is seriously going to explode. I love my Ray-Bans. Why is my effin head so small. #1's headband fits perfectly. I can not believe how thin my hair got. I'm going to need a wig. I should cut it off. WTF am I good at, seriously? I need gas already? I think I'm going to lose my mind. I don't get what Tumblr is. I love Instagram. Those meds jacked me up. I'm sick of being so rundown and weak. I hate what sickness did to my body. Why do they only make cool cases for iphones? I miss patio drinking. Shit, is that a canker sore? Shit. I'm starving. I ate way too much. I love bread. I wish it would rain again today. I could never have a car without a sunroof. I took one class and got an A. It's a 4.0! I need new underwear. I feel so lazy. This scar isn't so bad. Kinda looks like a worm. Violet walks like a drunk monkey. Do people still listen to the radio in the car? Why is this child obsessed with electrical cords. I'm so obnoxious. I'm so hilarious. Parking ramps freak me out. It's only 537? I'm so tired...... ;-)

Ostomy, Travel, and the Ever Questionable TSA.

I have a flight booked to go to NY in September to visit family and friends. It's also my Gram's 90th bday. I'm leaving the end of September so me getting my reversal done really is of the essence. If I can't the time won't put me off as much as the knowledge that I will have to deal with the TSA with an ostomy. I have started researching and reading to see where their boundaries lay and to see what kinds of instances pop up with them being outside of their rights. It really has me on edge, primarily for my return flight as I will be flying alone with a 7 year old and a 1 year old. The last thing I need is them pulling me to the side and messing with me and my stupid stoma. I have seriously begun running scenarios in my head. Almost as if practicing responses and what not. Anyone ever do that??
Trust me, I have read what they can't do and if they attempt I will probably end up on the no fly list!! I know I could be stressing myself out for nothing but it's just something I have to prepare for. As of this moment, all I know, is that I will still have my ileostomy. So I am planning accordingly. I found a couple of good sites and of course the TSA site that states their boundaries. Naturally, I have also found the horror stories of them causing bag leaks, demanding people undressing, asking to examine in the bag and the stoma.... Those did not help my frame of mind.
Travelling with kids is stressful enough without this additional worry. And like I said, I will be taking one leg of the trip alone with two kids. I don't even know how I'm going to carry and manage gear much less deal with a TSA agent trying to molest my stoma! I'm the only one that can mess with my stoma. Even my surgeon hasn't seen it in months!!
Ugh- STRESS! And seriously for no reason. Hoping for some good news regarding letdown surgery in the next few weeks. Maybe all this worry is for nothing. Ideally that will be the case. What's that saying- Plan for the worst, hope for the best. Yep- that's all me. I'm apparently planning defensive tactics in the event Lisa Vs TSA. Lisa always wins! ;-)

I have a flight booked to go to NY in September to visit family and friends. It's also my Gram's 90th bday. I'm leaving the end of September so me getting my reversal done really is of the essence. If I can't the time won't put me off as much as the knowledge that I will have to deal with the TSA with an ostomy. I have started researching and reading to see where their boundaries lay and to see what kinds of instances pop up with them being outside of their rights. It really has me on edge, primarily for my return flight as I will be flying alone with a 7 year old and a 1 year old. The last thing I need is them pulling me to the side and messing with me and my stupid stoma. I have seriously begun running scenarios in my head. Almost as if practicing responses and what not. Anyone ever do that??
Trust me, I have read what they can't do and if they attempt I will probably end up on the no fly list!! I know I could be stressing myself out for nothing but it's just something I have to prepare for. As of this moment, all I know, is that I will still have my ileostomy. So I am planning accordingly. I found a couple of good sites and of course the TSA site that states their boundaries. Naturally, I have also found the horror stories of them causing bag leaks, demanding people undressing, asking to examine in the bag and the stoma.... Those did not help my frame of mind.
Travelling with kids is stressful enough without this additional worry. And like I said, I will be taking one leg of the trip alone with two kids. I don't even know how I'm going to carry and manage gear much less deal with a TSA agent trying to molest my stoma! I'm the only one that can mess with my stoma. Even my surgeon hasn't seen it in months!!
Ugh- STRESS! And seriously for no reason. Hoping for some good news regarding letdown surgery in the next few weeks. Maybe all this worry is for nothing. Ideally that will be the case. What's that saying- Plan for the worst, hope for the best. Yep- that's all me. I'm apparently planning defensive tactics in the event Lisa Vs TSA. Lisa always wins! ;-)

Questions, comments, and concerns are useless.

I've been having some anxiety driven days. A lot of self doubt and maybe a little mourning for the time I've lost. I have been sick for over three years. I'll never get that time back. I know there are many who have been sick much longer but for me this has been enough. It was enough a year ago. I can't imagine letting this shit drag on for 10+ years and not putting my foot down and surgically doing something about it. Even with the minor issues I have dealing with post OP stuff, it beats the hell out of active UC every single day of my life. The worst part about severe UC wasn't the pain. It wasn't the blood loss. It wasn't the lightheadedness or the meds or hundreds of dollars in copays. It wasn't even my hospitalizations or the urgency to go so intensely that you are running to the bathroom, pants half off almost in tears, begging the universe to hold off until you sit down. Nope. The worst part is the ignorance. The uninformed, the lack of understanding and the assumptions.
For instance, I applied for disability and was denied because the government says I should be able to work in a medical office as a receptionist. Well, I don't know what doctor who would keep a receptionist who is always in the bathroom multiple times a day in pain, for up to 45 minutes at a time. Hard to answer phones and interact with patients from the shitter. When I say I used to be in the bathroom all day, I'm not exaggerating. People hear and make mention of IBD and it's dismissed as a tummy ache and some diarrhea. No one gets how disabling this effing disease is. I've missed years of working, travel, and normal life.
As nice as having no agenda is, I miss the financial independence and freedom I had when I worked. I decided to go back to school for nursing because I wanted to impact people who are in unfortunate circumstances. I want to help people with new ostomies feel OK and move forward in a positive manner. I can be an ostomy nurse better than anyone and I have the scars to prove it. My doubts are filtering in. School will be a few years. This coming semester is dead because of another surgery. Is it realistic to pursue it? Do you ever feel you are supposed to be doing something amazing and impactful but you don't know how to get there? I'm going to be 35 in just over a month. What have I done with my blank slate of life? I don't know anymore. I'm beginning to wonder what the hell I'm supposed to do. What am I contributing. What strengths do I have that I can really put to use? So many things feel just beyond my reach. Life gets in the way. My illness gets in the way. I have big things I want to do but not sure what they are. Vague dreams perhaps. It's hard to fine tune and make things happen through pain and weakness and illness. I guess I'm pissed off about it. There is no comment box in life. No one will get back to me to resolve the problem. Sometimes it isn't fair. I have grown a bit stronger but at the same time more doubtful and hesitant. I keep waiting for some complication or setback. Something to once more, derail my life. Who can I email about all this? I need tech support for my life.

I've been having some anxiety driven days. A lot of self doubt and maybe a little mourning for the time I've lost. I have been sick for over three years. I'll never get that time back. I know there are many who have been sick much longer but for me this has been enough. It was enough a year ago. I can't imagine letting this shit drag on for 10+ years and not putting my foot down and surgically doing something about it. Even with the minor issues I have dealing with post OP stuff, it beats the hell out of active UC every single day of my life. The worst part about severe UC wasn't the pain. It wasn't the blood loss. It wasn't the lightheadedness or the meds or hundreds of dollars in copays. It wasn't even my hospitalizations or the urgency to go so intensely that you are running to the bathroom, pants half off almost in tears, begging the universe to hold off until you sit down. Nope. The worst part is the ignorance. The uninformed, the lack of understanding and the assumptions.
For instance, I applied for disability and was denied because the government says I should be able to work in a medical office as a receptionist. Well, I don't know what doctor who would keep a receptionist who is always in the bathroom multiple times a day in pain, for up to 45 minutes at a time. Hard to answer phones and interact with patients from the shitter. When I say I used to be in the bathroom all day, I'm not exaggerating. People hear and make mention of IBD and it's dismissed as a tummy ache and some diarrhea. No one gets how disabling this effing disease is. I've missed years of working, travel, and normal life.
As nice as having no agenda is, I miss the financial independence and freedom I had when I worked. I decided to go back to school for nursing because I wanted to impact people who are in unfortunate circumstances. I want to help people with new ostomies feel OK and move forward in a positive manner. I can be an ostomy nurse better than anyone and I have the scars to prove it. My doubts are filtering in. School will be a few years. This coming semester is dead because of another surgery. Is it realistic to pursue it? Do you ever feel you are supposed to be doing something amazing and impactful but you don't know how to get there? I'm going to be 35 in just over a month. What have I done with my blank slate of life? I don't know anymore. I'm beginning to wonder what the hell I'm supposed to do. What am I contributing. What strengths do I have that I can really put to use? So many things feel just beyond my reach. Life gets in the way. My illness gets in the way. I have big things I want to do but not sure what they are. Vague dreams perhaps. It's hard to fine tune and make things happen through pain and weakness and illness. I guess I'm pissed off about it. There is no comment box in life. No one will get back to me to resolve the problem. Sometimes it isn't fair. I have grown a bit stronger but at the same time more doubtful and hesitant. I keep waiting for some complication or setback. Something to once more, derail my life. Who can I email about all this? I need tech support for my life.