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Thursday, February 2, 2012

wow, almost 2 months, almost a new person

I look back and I see I haven't posted for almost 2 months. These days, that's like a life time. I no sooner posted that I was having difficulties with my own pouch, with my own intestines, when I got a call from St. Louis that my daughter was really not feeling well in school.  She too suffers from UC.  She was having horrible pain, chills, fever, and couldn't stand up straight. Yet it was the beginning of finals and she didn't want to take time away from studying to rest. She didn't have time not to go to the studio (she an art major), to go to the health center. But it got worse. And worse.. I finally convinced her to go to the emergency room--I would at least know if she was obstructed, or impacted, and she could at least be seen by someone trained in IBD.  But no such luck. No scans, no xrays, not even an invasive physical exam (she's 19 and had this disease since she was 9, she knew what to expect). They sent her home with pain killers, but no treatment. This wasn't a small town no-nothing hospital. it was a teaching hospital in a major city.
I did what any mother with the means, the desire, and the fire to do so would do....I got on a plane.
I rented a hotel room.  I picked her up, brought her to the hotel room,  got them to make scrambled eggs at 11 at night, and went to the drugstore to buy all the horrible remedies that I as a LONG TIME sufferer of Ulcerative colitis know what to use. Ulcerative Colitis does NOT always cause diarhea. SOMETIMES, it causes the opposite. In college, I used to go weeks at a time without going to the bathroom. This continued most of my adult life until finally all I did was bleed. As I've mentioned before, when I was 34 my colon was completely removed because of all this bleeding.
My daughter knows this.
She went to the hospital looking for help.
they did nothing.
The health services at her school the next day were amazing. they did the necessary bloods, got in touch with her Dr. at home, followed whatever the Dr. at home wanted, and made necessary lab and Dr. appointments. When we got the the Dr. the next day, it was like a scene out of 'Terms of Endearment" with Shirley McClaine.  They attempted to have her seen by a physicians asst.  I stood in the middle of a large reception area, with my/her Dr. from home on the other end of the cell phone, and asked, LOUDLY, who was Dr. SOandSO. when someone pointed him out, I said rather loudly, I flew here from NY because your hospital couldn't be bothered to properly take care of my daughter, I'm not leaving until Dr. so and so gets on the phone and speaks and sees my daughter and HELPS HER.  It was exactly the type of moment that would have made me cringe had it been my mother and myself, although, I do remember when I had one of my big surgeries,as an adult, and I didn't like one of the private nurses, and I didn't tell my kind, sweet, husband----I told my mother, and let HER handle it. Like it or not, there are DEFINITELY times we channel our mothers.
We were able to get my daughter through her finals, and able to go away for the break as a family, and then we were busy with the flourish of preparations of packing my daughter off to Europe for a semester. Life is VERY busy sometimes.
While all this has been going on, I've had 2 more of those awful pouchoscopies, (one following an ER visit). The Drs. are discussing more surgery--which I REALLY DO NOT WANT TO DO.  Not fun. Lots of pain.
I've been researching colleges for my son.  ALSO Not fun---especially when we live in a world that relies more and more on one standard; WHY DOES HE NEED PHYSICS? Or PRECALCULUS???  I never took Chemistry! I use credit cards just fine!
Someone recently asked me what I will do when both children are gone.
I will be more than qualified to run a corporation, I just haven't been paid a salary for all my training and experience.

Tuesday, December 6, 2011

Better way to spend the day

Americana Manhasset

I would soooo much rather spend the day here, in this beautiful setting for a Chanel opening in Paris, than in my kitchen cleaning out cabinets and drawers, and sorting through the thousands of catalogues that seem to multiply by the hour!!!!!!

All day today I kept thinking to myself that there are so many people that must view my profile on facebook and on my blog and because I don't have a business title, and don't 'earn a salary" assume I don't "work".

For those of you who think the women and men of today are more enlightened, think again. For many, including my children, I am ALWAYS supposed to be available to chat, or BBM, or TEXT. To them, I am always on vacation, can always run errands, and don't add anything to the household.
While it is true that I am lucky enough to have household help for the major cleaning, REAL clean, only happens when you do it yourself. NO ONE, can toss your garbage but you. NO ONE can organize your stuff (or should) but you. I'm STILL trying to come to terms with the whirlwind that I called my daughter during Thanksgiving break. Her room was sort of picked up, spun around, and dropped.

Boy would I rather be sitting at the Chanel show.

Thursday, December 1, 2011

Two Lesbians Raised A Baby And This Is What They Got

Two Lesbians Raised A Baby And This Is What They Got

Ok, so, sometimes, my SMITH COLLEGE education comes back to haunt me and I have to lecture a little bit. I love this video. I love everything about it.
To all those who are opposed to gay marriage,
To all those who are opposed to gay couples raising children,

Who seems like a more productive member of society, him, or half the kids raised in single parent homes where no one is home all day to supervise
or help with homework or keep everyone safe from drugs?
Does he seem like he was raised with good values?
Does he seem 'whimpy'? Effeminate?
Some food for thought, Hmmm?

Sunday, November 13, 2011


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.

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...


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.

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...