I am having a POUCHOSCOPY tomorrow. For those of you who do not know what that means, it is the same thing as a colonoscopy, except without the colon. I don't have one. Mine was removed 11 1/2 years ago and replaced with something called a 'J-POUCH'. A j-pouch is built out of one's small intestine being cut, looped up, re-sewn, and pulled down and attached to where the rectum and anus where, so the person maintains normal bodily functions. Basically, foods just skips the step in the digestive process that takes place in the colon (large intestine). The j-pouch eventually learns to do SOME or MOST of the functions of a colon, but never really all. Nevertheless, for some people, like myself, this is (or was at the time), the only known "cure" for Ulcerative Colitis.
But I have problems with mine. I've had a lot of problems with mine. In the beginning I used to get 'Pouch-itis" ALOT. That comes with fever, chills, severe diarrhea, and for me, hospitalization and IV medications. When that finally stopped I had to deal with adhesions. Adhesions is/are scar tissue that like to grow and wrap itself around the organs like vines. It is especially prevalent in the abdomen. Lucky me, I am REALLY REALLY prone to adhesions, and the thing is, they like to wrap around the delicate little pathways that lead in and out of my pouch and BLOCK everything. My surgeon (who I LOVE), has done 7 of my 8 follow up surgeries to deal with these suckers. Actually, the second surgery was really because he had left 1 centimeter of colon to help with muscle function (yup, the sphincter muscle), but that got soooo infected that it was leaning on a nerve in my lower back and I could barely walk without pain. Kegel exercises would have to do!
Anyway, I seem to be having one of those adhesions building up; or should I say tightening up. Last time this happened the surgeon went in and 'stretched' from the inside out to open the passageway and buy me more time. My surgeon and my gastroenterologist have this nasty habit of 'scoping' me in their offices without anesthetic. People make fun of me because I take car service into the city to my appointment if my husband isn't able to go with me, but I KNOW. I don't have friends go, because the waiting room process can be ENDLESS, only to the find out that I'm going to be scoped. SO, I go with Xanax, or some other such substance with me, because they aren't allowed to dispense when in their offices. 2 weeks ago, I was in a lot of pain, so she saw me first thing in the morning. STUPID ME. My husband was away, and I drove myself---and YUP, I was scoped. So I DIDN"T TAKE ANYTHING. This wasn't the first time, but still not pleasant. Actually, it was quite painful when she saw that the pouch was fine, and the problem was mechanical and she tried to get to it to open it. After, she prescribed medication to help the digestive process, again to put off any further procedures. Yay. This would now be 3 more pills a day to go with my already 10-12 pills a day in order to not have headaches, and not have a stomach ache while not having headaches. I had to get all sorts of clearances to add another pill to the mix, (achem Heath Ledger), I stayed home for a day to see how this would effect my already diminished cognitive capabilities (due to medication).
Well the pills only worked sometimes. So I called to see if she could maybe do the same 'stretching' thing again---BUT WITH ME IN LA LA LAND. I swore to my son that this is NOT general anesthesia---10 times is enough. So YES, tomorrow I will be in LA LA Land. Pretty deep too since it will be more of a procedure than an exploration. Unlike the rest of you-- I HAVE NO PREP ;) I guess that's a perk. I'm hoping tomorrow is successful. I haven't had abdominal surgery since March 23, 2008. My son is a junior in high school and I have no time for recovery. I spent ALL of my 30s in and out of the hospital. I spent the beginning of my 40s doing the same. NO MORE.
NAMASTE.
Sunday, November 13, 2011
Tuesday, November 8, 2011
According to Allison: FOR THE LOVE OF A CHILD
According to Allison: FOR THE LOVE OF A CHILD: Yesterday was a horrible day. I witnessed something that I, who I believe can and have survived almost everything, could not. Yesterday, I...
FOR THE LOVE OF A CHILD
Yesterday was a horrible day. I witnessed something that I, who I believe can and have survived almost everything, could not.
Yesterday, I was present for the funeral of a 19 year old girl. A healthy 19 year old girl; not that it would have been any better I guess had she not been healthy, but I would have been able to rationalize and/or prepare more. I had watched this child (I believe i am allowed to say child because my daughter is the same age), grow up. I saw her at holidays in temple, singing in the youth choir, doing various presentations with the hebrew school and later in the Hebrew high school, and of course, always in the marching band at school. The particular year in Hebrew school in which she and my daughter were a part, more than 13 kids had remained a part of the program. It was a part of who they were. They might not have all been close friends and might not have "hung out" together, but they were definitely a group, and she will definitely be missed in years to come.
So yesterday, I went to the funeral, because, she was ANYONE'S CHILD. And I watched a Grandmother give a eulogy. I don't think that its natural. I've watched grandchildren numerous times stand up to talk about what they have learned from their grandparents. But this woman stood up and showed the sign language that her granddaughter made her learn.
I watched as sisters stood up and read a gut wrenching poem about their sister, as friends and friend's parents got up to tell sweet and funny anecdotes about their lost friends, and then, I watched something I hope to never have to do. I watched as a mother and father bravely stood up, to talk about their love for their child, their pride in their child, their sorrow for their loss, but their happiness for: all they were able to share with her, experience with her, provide for her, encourage for her. Her dad talked about scuba diving with her and hiking and being on vacations together. Her mom talked about her community service trips, and how proud she was to help and watch her grow into an independent REAL and GROUNDED young woman.
When I left I thought, "Wow". All I wanted to do was wrap my arms around my children and tuck them in their beds and keep them safe. But I also thought about the trips we've taken, our snorkeling with sea turtles, eating giant ice cream sundaes at Disney, sitting on the floor of hotel rooms in the rain happily playing board games and eating chips, laying in bed all together to watch movies when tired on vacation, hiking in Wyoming, and even just sitting in our backyard together. We've created memories together. We've put in time and energy as parents and as a family.
The young woman's parents said that she was taken too soon, but she was taken happy, doing what she wanted, where she wanted. Our job as parents is and should be to enjoy our children, to help our children, to encourage our children, and to root for our children. They only get one childhood. It goes fast.
Yesterday, I was present for the funeral of a 19 year old girl. A healthy 19 year old girl; not that it would have been any better I guess had she not been healthy, but I would have been able to rationalize and/or prepare more. I had watched this child (I believe i am allowed to say child because my daughter is the same age), grow up. I saw her at holidays in temple, singing in the youth choir, doing various presentations with the hebrew school and later in the Hebrew high school, and of course, always in the marching band at school. The particular year in Hebrew school in which she and my daughter were a part, more than 13 kids had remained a part of the program. It was a part of who they were. They might not have all been close friends and might not have "hung out" together, but they were definitely a group, and she will definitely be missed in years to come.
So yesterday, I went to the funeral, because, she was ANYONE'S CHILD. And I watched a Grandmother give a eulogy. I don't think that its natural. I've watched grandchildren numerous times stand up to talk about what they have learned from their grandparents. But this woman stood up and showed the sign language that her granddaughter made her learn.
I watched as sisters stood up and read a gut wrenching poem about their sister, as friends and friend's parents got up to tell sweet and funny anecdotes about their lost friends, and then, I watched something I hope to never have to do. I watched as a mother and father bravely stood up, to talk about their love for their child, their pride in their child, their sorrow for their loss, but their happiness for: all they were able to share with her, experience with her, provide for her, encourage for her. Her dad talked about scuba diving with her and hiking and being on vacations together. Her mom talked about her community service trips, and how proud she was to help and watch her grow into an independent REAL and GROUNDED young woman.
When I left I thought, "Wow". All I wanted to do was wrap my arms around my children and tuck them in their beds and keep them safe. But I also thought about the trips we've taken, our snorkeling with sea turtles, eating giant ice cream sundaes at Disney, sitting on the floor of hotel rooms in the rain happily playing board games and eating chips, laying in bed all together to watch movies when tired on vacation, hiking in Wyoming, and even just sitting in our backyard together. We've created memories together. We've put in time and energy as parents and as a family.
The young woman's parents said that she was taken too soon, but she was taken happy, doing what she wanted, where she wanted. Our job as parents is and should be to enjoy our children, to help our children, to encourage our children, and to root for our children. They only get one childhood. It goes fast.
Sunday, October 30, 2011
According to Allison: freedom of speech/freedom of the press
According to Allison: freedom of speech/freedom of the press: Today was really confusing. I woke up in a really relaxed, good mood. And I wasn't in any pain. For ME that's a big deal. I mean, it's bee...
freedom of speech/freedom of the press
Today was really confusing. I woke up in a really relaxed, good mood. And I wasn't in any pain. For ME that's a big deal. I mean, it's been raining. It's been snowing. I had half a glass of wine yesterday (in addition to my regular dosages of pain meds, adavan, anti seizures, digestion meds and heart meds). That was a a risk. But I did NOT have a headache this morning. I had had a really fun day in the city with my hubby after an equally fun night at a costume party with friends, where we watched the hometown team of one of my guests win the world series. My daughter is in college in that city so they were texting all night.
My "high" or balloon was shot down by a friend who told me (more in tone than in words) that the party couldn't have been that much fun because there were less people than in fewer years.
Well, I had fun. My guests had fun. The food was really, really good. The music was really good and we could get on the dance floor we wanted. Nobody was offensive. Nobody was overly drunk or unseemly. (I must be getting old by the way, that I notice and/or comment on such things)
I am not a 'verbally' confrontative person (unless it has to do with one of my kids---then WATCH OUT). When we were in high school, or at least where I went to high school, we wrote notes to one another. Sometimes really long ones. We passed them in the hall in the morning or at lunch or whenever. We vented then. Maybe that's why I'm good at writing. But verbally? No. not me. I'm an emotional person, and when face to face, my emotions get in the way of coherency. SO I vented on Facebook, BUT, I kept it anonymous. The only comment made were by people from my hometown and perhaps 1 or 2 people around here. Then the bully campaign began, so I removed the post as I was told I was humiliating someone. I NEVER named names, but I was being a bully. Forget freedom of speech or freedom of the press or anything like that.
When the word Humiliation was used, I was reminded of Cinderella and the glass slipper. you know the old saying " if the shoe fits, wear it",? How can one feel humiliated unless one recognizes oneself?
Do you think people realize what they say, and they KNOW instinctively who they think they can get away with it with?
I wonder if, like a pheremone, I give off some kind of odor that encourages dumping on me. Its ok for people to say whatever they want, but since writing is my only way of being heard for defense, for being actually heard, I'm NOT supposed to defend. Somehow I think this is wrong.
I think I'll keep writing.
My "high" or balloon was shot down by a friend who told me (more in tone than in words) that the party couldn't have been that much fun because there were less people than in fewer years.
Well, I had fun. My guests had fun. The food was really, really good. The music was really good and we could get on the dance floor we wanted. Nobody was offensive. Nobody was overly drunk or unseemly. (I must be getting old by the way, that I notice and/or comment on such things)
I am not a 'verbally' confrontative person (unless it has to do with one of my kids---then WATCH OUT). When we were in high school, or at least where I went to high school, we wrote notes to one another. Sometimes really long ones. We passed them in the hall in the morning or at lunch or whenever. We vented then. Maybe that's why I'm good at writing. But verbally? No. not me. I'm an emotional person, and when face to face, my emotions get in the way of coherency. SO I vented on Facebook, BUT, I kept it anonymous. The only comment made were by people from my hometown and perhaps 1 or 2 people around here. Then the bully campaign began, so I removed the post as I was told I was humiliating someone. I NEVER named names, but I was being a bully. Forget freedom of speech or freedom of the press or anything like that.
When the word Humiliation was used, I was reminded of Cinderella and the glass slipper. you know the old saying " if the shoe fits, wear it",? How can one feel humiliated unless one recognizes oneself?
Do you think people realize what they say, and they KNOW instinctively who they think they can get away with it with?
I wonder if, like a pheremone, I give off some kind of odor that encourages dumping on me. Its ok for people to say whatever they want, but since writing is my only way of being heard for defense, for being actually heard, I'm NOT supposed to defend. Somehow I think this is wrong.
I think I'll keep writing.
Friday, October 7, 2011
I am totally starting to understand why every year it gets easier to ORDER more of the food for the Jewish holidays. It's not that I don't like to cook, I LOVE to cook. I LOVE when some thing that I have created tastes delicious. I LOVE when my husband and children come in the door and ay that something smells really good.
BUT, today I was faced with a VERY real truth. I am getting OLD, and MY EYES are going. TWICE I MIS-READ measurements and had to start over. Maybe I need to wear my reading glasses more. Maybe I need more sleep (definitely need more sleep), maybe its from medication. All I know, is that simple dishes and breads and cakes that used to take 10 minutes to assemble now take an hour. MAYBE its my children or other family BBMING - texting me to ask/tell me their latest crises because NO ONE JUST CALLS ANYMORE. Who knows.
MAYBE its having to think about haircuts and carpools and tutors, and tests, and homework WHILE I'm reading the measurements and getting the texts.
MAYBE its the door bell ringing and the dog barking while i'm thinking and cooking and measuring etc.
I don't know, but I gotta go pick up from school and rush back to take a cake out before we go for a haircut and then I GET TO shower and finish cooking before temple.
Have an easy Fast everyone.
For those of you who don't celebrate/observe, hug your mother even when you find raisins in your chicken soup and carrots in your dessert.
BUT, today I was faced with a VERY real truth. I am getting OLD, and MY EYES are going. TWICE I MIS-READ measurements and had to start over. Maybe I need to wear my reading glasses more. Maybe I need more sleep (definitely need more sleep), maybe its from medication. All I know, is that simple dishes and breads and cakes that used to take 10 minutes to assemble now take an hour. MAYBE its my children or other family BBMING - texting me to ask/tell me their latest crises because NO ONE JUST CALLS ANYMORE. Who knows.
MAYBE its having to think about haircuts and carpools and tutors, and tests, and homework WHILE I'm reading the measurements and getting the texts.
MAYBE its the door bell ringing and the dog barking while i'm thinking and cooking and measuring etc.
I don't know, but I gotta go pick up from school and rush back to take a cake out before we go for a haircut and then I GET TO shower and finish cooking before temple.
Have an easy Fast everyone.
For those of you who don't celebrate/observe, hug your mother even when you find raisins in your chicken soup and carrots in your dessert.
Tuesday, September 20, 2011
support Group leader--me?
CCFA called and wanted to know if I would come to fill in as one of the support group leaders this week. Now, this is a position I held for about 3 years, and I was fairly religious about going. Then I had my craniotomy, and it became more and more difficult to go out on week nights, and be supportive of people just starting out in the world of Crohn's Disease and Ulcerative Colitis.
Ulcerative Colitis, and Crohn's has almost always been a part of my life, so to me, they are just chronic illnesses that have to be dealt with.
HOWEVER, my head hurting all the time is a different story to me. when i stepped down as a leader, i explained that it was not that i didn't want to be supportive, I just could commit to always being somewhere and having people depend on me, because when my head starts to hurt---which it does often and intensely, I can't be supportive of others. That's just how it is.
I would rather have a stomach ache than headache. Not everyone would say that, but I have mastered digestive issues. I spent years driving my kids to school or playing golf or running errands, knowing where the nearest bathroom was, wearing pads or depends, or not eating purposely before going out. Did you know codeine slows your system? I would take a codeine before going to a party or bar mitzvah and purposely not eat so that I could have fun.
I don't drink anymore. and I LOVE WINE. But a headache isn't worth it. so I take an adavan or xanax in the car on the way out and I am relaxed as you will be with your drink, with a lot less calories!
anyway, I've had a pretty HORRIBLE headache this week, and been VERY dizzy, so I'm not going to be supportive of anyone but ME, and MY KIDS, and HUSBAND.
But you have a good week!
Ulcerative Colitis, and Crohn's has almost always been a part of my life, so to me, they are just chronic illnesses that have to be dealt with.
HOWEVER, my head hurting all the time is a different story to me. when i stepped down as a leader, i explained that it was not that i didn't want to be supportive, I just could commit to always being somewhere and having people depend on me, because when my head starts to hurt---which it does often and intensely, I can't be supportive of others. That's just how it is.
I would rather have a stomach ache than headache. Not everyone would say that, but I have mastered digestive issues. I spent years driving my kids to school or playing golf or running errands, knowing where the nearest bathroom was, wearing pads or depends, or not eating purposely before going out. Did you know codeine slows your system? I would take a codeine before going to a party or bar mitzvah and purposely not eat so that I could have fun.
I don't drink anymore. and I LOVE WINE. But a headache isn't worth it. so I take an adavan or xanax in the car on the way out and I am relaxed as you will be with your drink, with a lot less calories!
anyway, I've had a pretty HORRIBLE headache this week, and been VERY dizzy, so I'm not going to be supportive of anyone but ME, and MY KIDS, and HUSBAND.
But you have a good week!
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