OT but WOO HOO!!!!

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summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 1/24/2009 2:55 PM (GMT -6)   
So this is really not important or anything, but i just wanted to share cause i am sooo excited!
I went DANCING last night for the first time since i got sick!  i had the BEST time! 
I danced from 10:30 until 1:30!  That's 1500 calories, lol.  I looked it up you burn 500 calories an hour dancing!  and my legs hurt so bad today i can barely move, lol.  But it's sooo worth it!
 
ok just wanted to randomly share, lol

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/24/2009 3:00 PM (GMT -6)   
I can't wait to do that!!! My friends and I are planning nights out and are talking about what we're going to do once I'm better. Some of my friends I've met while being pregnant/sick so I have never had the fun 'social' relationship with them. We're making movie plans, dinner plans...drinking plans!!! Heck ya!!!!

I am so excited for you Summer!!!! Is that your name? Just curious.

Anyway, I think that you have really been one of the greatest supports regarding my ability to accept my situation and embrace the ileostomy fully. I do share some of the experiences you have shared with me with my family and they are very happy that you are living your life and that I will soon be living mine!!!

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Surgery is scheduled for February 6th!!!  : )   Yea!!!!!!!!!!


Miss UK
Regular Member


Date Joined Oct 2007
Total Posts : 128
   Posted 1/24/2009 4:29 PM (GMT -6)   
But it is important smilewinkgrin   I think it does us all good to know there is life after terrible illness and I am so glad for you that you got out and had a great time lets hope this is the first of many many more!!! :-)
36 year old single mum to a 2.5 year old son
Suspected Crohns when 10 years ago had a very painful rectal abscess
Diagnosed with Crohns desease properly 6 years ago
2008 developed fistula bowel perforated onto bladder resulting in temporary ileostomy
hopefully a reversal around March 2009.


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/24/2009 5:36 PM (GMT -6)   
Miss UK you don't have to worry about that!!! Summer has a knack of doing things I didn't know existed...pudding ring a bell, Summer?...

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/24/2009 7:11 PM (GMT -6)   
OHIO76 said...
Miss UK you don't have to worry about that!!! Summer has a knack of doing things I didn't know existed...pudding ring a bell, Summer?...
SUMMER!!!   You need to tell the story about the pudding thing you did.  We have a lot of new folks that could use it as a "learning" experience, I guess.
 
Come on, tell us again!
 
 
 
 
 
 
 
 
 
 
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/24/2009 7:25 PM (GMT -6)   
Yes...I am pushing for PUDDING TALK!!!

: )
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Surgery is scheduled for February 6th!!!  : )   Yea!!!!!!!!!!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/24/2009 10:49 PM (GMT -6)   
LOL guys
first robyn, my name is actually Leah, i just use Summerstorm, cause i like summer storms, lol, real original i know! And that was really sweet of you to say about me, i'm glad that i can help you!

A little background for everyone.Well before i got sick i was pretty wild, always doing something fun, and then sick put a damper on that!
but i ran into some old friends at my high school reunion in March and we started hanging out. Well we have Friday nights out, and we just do grown up things, no kids, just lots of vodka, lol.
So one of the girls texts me and she is like, we should do pudding wrestling, and i am like OH YEAH, it was summer time when this happened.
It was a friday and it was me, lisa, tim, deanna, andy and my husband. well we didnt' want to pay for all that milk, so another friend suggested we use half and half and water. Well we got a kiddie pool and filled it up. But noone thought about the fact that pudding takes like 4 hours to set up. Everyone but me was SMASHED, and i was actually a little tipsy, my husband wasn't drinking at all. Anyway so what we ended up with was this pool full of liquid pudding, so me and deanna and andy got in it, noone else would. We used vanilla so that it wouldnt stain. Well we were splashing around in there, andy in his boxers, me and deanna in our shorts and bras, lol. We started out with our shirts on but shirts with pudding all over them are very uncomy (and BTW they do not know about my bag, it's amazing how people can't tell) so anyway, we splash around and had a ball!
well we got finished playing in there adn decide that we will all go down to the pool to clean off. We ended up in the pool for over 6 hours! didnt bother my bag at all, however i was pruned up for almost a week and all that chlorine we were all sooo itchy, lol.
I got lots of advnetures, lol. The next weekend was the first time in my entire life i actually got drunk, drunk and it was SOOOO fun! I'll try to think of some more good stuff to tell you.
Ya'll just wanna hear my stories to make fun of me, lol.

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/25/2009 3:04 AM (GMT -6)   
I want to hear your stories b/c you're LIVING!!! : )

I met my husband during a time when I was out and about a lot...meaning, I was at the bar often. : ) That's where I met him too, but that's besides the point. Anyway, we met and moved in together almost immediately (literally we did not go a day without seeing one another until our bachelor and bachelorette parties almost two years later) and started the 'home life'. I was ready to slow down and he was already at that point...he too has a history of party days and lots of fun times. We still went out periodically and had lots of fun, but of course all of that came to a screeching hault when I got sick...not to mention we became pregnant a month after my initial flare...which was a month after our wedding. : ) So it was boom, boom, boom!

We used to be able to do dinner and a movie...but now it's just one or the other...if that. Also once the high dose effects of prednisone kicked in I was feeling very self conscious about my appearance and did not want to be in public. I'm still very unhappy with the way I look, as I have gained a butt-load of weight and my face is just hidious. However, I know the end is near and I will hopefully regain my jaw line by the spring.

So, hearing your stories and knowing that you can pick up where you left off just gives me so much hope. I'm sure you all can relate with the feeling of hopelessness when no treatments work...my heart broke each time I felt that pain I feel when I'm about to be super sick. Sometimes my emotions would be so strong I'd have sit down and process the fact that I was STILL sick. My nurse told me that there are three of us out of all their clients just aren't responding to medications...there is no answer of course why this is...but I'm kind of glad mine has come on and been fierce b/c I haven't spent as much time as others suffering and trying to gain remission. HOWEVER, did you know that no everyone feels pain with UC? This is a currently thread on the UC forum and I am SHOCKED!!! I just assumed that the pain I felt was normal!!! When in a semi to full blown flare I tell people that it feels like someone took a meat grinder to my colon and expected it to continue functioning. It's horribly painful to the point that I look green from the blood loss and pain. So yeah, I'm just a little surprised.

Anyway, if you note the time it's crazy early in the morning. The prednisone taper causes me some insomnia, not to mention that I actually received a few 'good' hours of sleep this evening so my body is really ready to rock and roll! Seriously, even before the taper if I was able to sleep hard without interruption from UC or teething Baby Love then I sometimes woke up around this same time ready to start my day! I have to post paperwork and things online for the state for my job, and I'm sure some people think there's something crazy about me b/c I have things completed at all hours of the night! : )

Well, it's obvious that I'm a rambler!

: ) Robin

Oh, and Leah...it's nice to meet you!!! Robin Byrd is my family nickname...normally I'm just called Byrd. : )
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Surgery is scheduled for February 6th!!!  : )   Yea!!!!!!!!!!


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/25/2009 4:00 AM (GMT -6)   

Summer,

Thanks for re-sharing your pudding story... ONLY YOU!!!   I get a chuckle every time I hear it.  I can just imagine 3 adult size kids sitting in a white pool of pudding... (as I sit here now shaking my head with a grin on my face in the wee hours of the morning.)    Even at my age (!) I can remember those crazy things I did when I was younger.   I think I relive some of those times when I hear your stories!  But I have to admit that I have Never done the pudding wrestling!!! 

And Robin, yes, I have been up and posting on here at all hours of the night and morning too.  I have been having some sleeping issues lately as well.  I have become a fairly light sleeper and it has become worse lately.  My insomnia normally is not related to my Ostomy or CD, but more to things that are weighing heavily on my mind.  Right now, it is my DH's ALS diagnosis.  He will be retiring (disability) in March, not sure of the exact date yet, but we were told it usually takes 3 months from when you file.  That would be around the end of March.  He also has an appt on Tues in Indianapolis at the ALS Clinic, and believe me, it usually isn't good news or hope.  So, tho I know it is good to keep the appts, it is nothing that we really look forward to.  

And sleepless nights makes working thru the week a real bear for me.  I do require 8 hrs, one way or the other.  I've begun LOVING naps, when I can get them.  I have even resorted to xanax and ambien to control it and get back into a decent sleeping pattern.  Thru the week, I leave the house around 7 a.m. to go to work and usually get off in the middle of the afternoon between 1:30 and 3:30.  I work part time, but I work my own schedule.  Since my DH is still working too, he is pretty wiped when he gets home and has been working  'revised' hours as well.  Mornings are not real good for him and he is slow to get moving.  He has never been an early morning person anyway.  When he was still wearing button up shirts to the office, I had to adjust my schedule so that I could help him dress in the a.m., but now he is in pullover shirts and able to manage those still on his own, so I am back to an early schedule.  Parking at the university is so much better the earlier I can get there during Fall and Spring semesters.  Anytime after 8 - 8:30, and I have to walk a mile!!!  That just sux when it is cold and windy.

That's a little about my life in general. 

Meeting and helping people on this board has been almost like therapy for me.  I have learned a lot as well.  I just hope that I can share all that I have learned to help others get to the point I am at.

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/25/2009 12:58 PM (GMT -6)   
when i was sick i slept ALL the time, now i dont get much sleep, and you will notice that i am on here in the morning, late at night, but that's justbecause i am awake. Alot of times my son is awake too.
nothing helps me sleep though if i am not sleepy, i even got where ambien wouldnt work. Phenogren makes me pretty sleepy, but unless i am just worn out exhausted it takes me forever to go to sleep!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/25/2009 1:03 PM (GMT -6)   
and ms robin, i will be excpecting some exciting stories from you in a few months!!!

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 1/25/2009 1:19 PM (GMT -6)   
WOW! I can't believe you actually did that. That sounds like so much fun. I want to pudding wrestle! There is something liberating about getting messy and not caring. I played mud vollyball once and it was a blast.
I can't believe you had only sports bras and shorts on and no one noticed your bag....? Not that I would be caught in public without a shirt b/c of my horrible stretch marks from pregnancy-my fault, I gained like 50 lbs! But they haven't faded yet, so one-piece swim suits and belly covers for me!

At this point, I'll be glad when I can wear jeans again.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/29/08 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, zofran, immodium, lovonox, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/25/2009 2:07 PM (GMT -6)   
I refused to support this body with any kind of investment clothes items, so after it was decided that I would be suffering for a bit longer I went to a cheap clothing store and bought a pair of slacks and jeans (which I never do...normally I wear Lucky's or BKE's)...anyway, I cried when I got back in my husband's truck (he waited for me outside...isn't he sweet?!). I haven't worn a pair of jeans since before I was pregnant! That was Feb/March of 2007!!! I did have a pair of maternity jeans, but that doesn't count. So, yeppers, I cried.

Just imagine how I'll be once I lose my weight and shopping for my normal clothes?! Oh my GOSH!!!! I'm treating myself to a few Burberry pieces...but I haven't decided what they'll be. Definitely not a bag, as my husband bought me an amazing red leather Kenneth Cole bag...LOVE IT!!! So, I'm not ready to retire or change it out yet. Chassity, have you been to Plato's Closet in the city? I think there's one in Gladstone or somewhere in the northern city, and another in Lee's Summit. I plan on shopping it up at those stores, Marshall's, TJMax, and Victoria's Secret!!!! I want loads of new things, so I'm going to the cheapest places for the best clothes!!! I CANNOT WAIT!!!

My sister owns a salon and she's going to cut and color my hair before the surgery. I like to keep it short and stacked, so we're going to make it pretty spiky so I can just spray it and make it look decent for when people come by to visit. Also I'm assuming/hoping my face will go down so I'll be ready for my super sleek short hair-dos. It's also so upsetting to have to adjust your hair and clothes to your body style and size. Normally I would never wear some of the tops I have, but I have no choice...I have a big bootie and belly...and super round face. So, I haven't been able to wear some of my chunky necklaces.

I'M GETTING MY LIFE BACK!!!! WHOO-HOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

And don't you worry...I'm going to be bragging up about all kinds of things I do in the future.

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Surgery is scheduled for February 6th!!!  : )   Yea!!!!!!!!!!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/25/2009 2:31 PM (GMT -6)   
well we had on regular bras, lol. We weren't intending on being topless! but noone was hanging out or anything. I just pulled my shorts up high.
there wasn't a whole lot of light out there, and once we got in the swimming pool it was completly dark. I think i put some pics of it up on the photobucket page.

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 1/26/2009 2:15 PM (GMT -6)   
Summer,
Oh regular bras, this is starting to sound......XXX! (JK LOL)! :P

Robin,
I just have been buying lounge pants and hoodies. Cute and comfy. I don't plan on "real clothes" shopping until I'm off pred and my abdomen is not painful, b/c I still am sensitive and hurts. Plus I can't suck it in b/c the muscles are still sore. I have lost some weight from multiple hospital stays, but still...
I also got my hair cut and colored right b4 surgery, but let me tell you, you won't care what you look like for a few days anyway. They won't let you shower for a few days and even then, you'll be hurting. I tried the water-less shampoo for my hair, and it's basically crap. I have a stacked bob about chin length, But your hair sound shorter than mine, if you can spike it, it may work better for you. But who cares what you look like after. Focus on rest! Besides, you'll have tubes and IV lines coming from everywhere, and they'll need easy access to your stoma and incisions, so you know, you probably can't wear a bra-only the beautiful gowns they give you. You won't want to get your clothes messy anyway.
If having people visit makes you stressed on your appearance, then best to keep people away. It may be overwhelming anyway. 'Cause YOU WILL NEED YOUR REST! So you can get back to that baby!
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/29/08 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, zofran, immodium, lovonox, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/26/2009 2:28 PM (GMT -6)   
i wore a bra, these things HAVE to be controlled, lol. And they will let you wear regular clothes as long as they are loose enough, i just bought really cheap stuff adn then threw it away

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 1/26/2009 2:33 PM (GMT -6)   
TMI alert----My ladies got used to being FREE! after 3 hospital stays....Too many monitors on me, probs, IV lines, etc.
Now I feel soooo......restricted (JK JK JK)!
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/29/08 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, zofran, immodium, lovonox, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 1/26/2009 2:34 PM (GMT -6)   
OK,
I apologize for that. Where is this thread going now.....LOL!!! Sorry Gents if you're reading this.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/29/08 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, zofran, immodium, lovonox, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/26/2009 4:34 PM (GMT -6)   

I had STRICT orders to extended family/friends that NO ONE was to visit me!!!  I never feel like visiting while in the hospital and when someone was there, I never rested, which was what I NEEDED to do:)

BTW, my husband and daughter were allowed!

Summer, wasn't it an ordeal to get a bra on with all the iv's? 

 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/26/2009 5:46 PM (GMT -6)   
no not really. they just unhooked me for a minute then hooked me back up.

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/26/2009 8:35 PM (GMT -6)   
I want a bra.

I'm not big...I'm smaller after nursing...and I really would like to be held together. : ) I will be getting some wireless bras though. I also like the idea of getting really cheap super large tops...maybe I'll hit up a second hand store and get something with a decent neckline. : )

So, after all the bragging it up I've done...and the pushing the limits with my colon...it's back and fierce. Oh well, I keep telling myself...soon...it will be all over soon.

I'm scared about the surgery today. My plans for next week are coming together and it's becoming more real. I know it is the best decision, but my goodness this is scary. It's also been difficult because this cold is wiping me out. I'm taking medicine, but I may need some antibiotics before the surgery. Do you think that's a good idea? Just in case maybe? I may call my nurse in the morning and ask her to call something in. I just want to make sure I'm tip-top for the surgery!

I'm really looking forward to the resting part. I haven't really had a good night's sleep in such a long time. I also like the idea of asking people to not come see me in the hospital. I should start spreading the word. I really only want to see my husband, son, parents and siblings. My surgeon agreed that b/c I've had MRSA I'll have a private room, so hopeflly my husband can stay with me. I know I'll be out of it, but I really need his presence. He needs to be with me too.

Anyway, I am planning my outfits loose and comfy...and I am just so looking forward to getting off all my meds. Especially the steroids!!!

Well, I'm going to delve into my pile of paperwork...really, it's just my session notes...but they all need to be formatted in Word and then put online...grrr. Then of course there's the dozen other forms that need to be completed and put online as well. *sigh*

I hope you guys had a wonderful day!!!

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Surgery is scheduled for February 6th!!!  : )   Yea!!!!!!!!!!


vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 2/7/2009 2:29 AM (GMT -6)   
summerstorm said...
So this is really not important or anything, but i just wanted to share cause i am sooo excited!
I went DANCING last night for the first time since i got sick!  i had the BEST time! 
I danced from 10:30 until 1:30!  That's 1500 calories, lol.  I looked it up you burn 500 calories an hour dancing!  and my legs hurt so bad today i can barely move, lol.  But it's sooo worth it!
 
ok just wanted to randomly share, lol
It's been a while since I had my surgery, but I still remember the joy I felt when I realized I was now able to do the things I used to(and almost forgot)do before I got really sick. The first litmus test for me was going fishing in the middle of the night, in the middle of nowhere, with a few of my friends, and with no bathroom in sight for miles. It was a very liberating feeling!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/7/2009 11:30 AM (GMT -6)   
ooo we went dancing again last night, we went to a new club, like really nwe last night was it's first night, so tehre were almost no people there, i think it willbe nice when more people come. totally off track tehre, lol.
But i got to dance a little bit!
going to see john reep tonight, the guy from hickory (right near me) that one last comic standing
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