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Name: margalit
Location: Massachusetts, United States Professional writer, educational advocate, opinionated ultra liberal mother of 18 year old twins, living life in the slow lane due to hypertrophic cardiomyopathy, congestive heart failure, and diabetes.

email: margalitc at yahoo dot com

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Thursday, December 07, 2006

Shit, shit, shit...this isn't good`

Without revealing anything personal, today the Girl had a followup appointment at the girly doctor. She's been having girly issues for a couple of years now, and we've done the pediatrician route, which led to seeing a specialist, and today the specialist passed us on the the surgeon. I'm beside myself with worry and grief. She's 14 years old and she's had more reasons to visit the girly doctor than most adults. It just doesn't seem to be right. It's as if she has been gifted with my leftover girly crap. After 40 years of gynecological hell, the last thing I ever thought was that my baby girl, the fruit of my many years of infertility pain, would end up at the same place.

It's not really the same place. Our various girly problems are totally different. But the result is the same. Trying and trying to control something that is supposed to be totally natural. Stumping doctor after doctor with our weird girly problems. It so sucks.

I feel terrible guilt about this. The Girl has had a multitude of issues since before she was born. She's had a full genetic workup and she didn't inherit my weird genetic anomaly, thank goodness, but she's certainly inherited something pretty crappy. The doctor suggested a couple of scenarios, but none of them are good. They just aren't. She's done every medical intervention there is. She's been seen for 2 years by the head of Adolescent Gynecology at Children's in Boston. This is a great doctor that I like and trust, and she's worried. If she's worried, I'm apoplectic.

I'm trying to keep my game face on, but I'm not doing well. I'm scared beyond scared for my Girl. We have an appointment with the surgeon on the 21st. The doctor we saw today thought that it couldn't wait. It all sounds so ominous. It shouldn't be happening.

Her hebrew name is Gila Shoshana bat Margalit. Please say a mischeberach for her, or pray for her if you're another persuasion.

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9 Comments:

Anonymous Anonymous said...

Isn't time for a 2nd or 3rd opinion. Your Dr should be open to this or offer a referral.
There are some great hospitals here on the West Coast or in NYC.
NYC Columbia for example or in the west,
Los Angeles area University of California Los Angeles (UCLA) or Children's Hospital of Orange County (CHOC) in Orange California.
There is nothing worse than a sick child.
Best of luck.

7/12/06 4:42 PM  
Blogger Belinda said...

Goes without saying, I will. And I'm glad you're doing your best not to frighten her, because that isn't productive anyway. She's tough stuff--I'm betting in her favor, regardless of the "odds."

7/12/06 6:28 PM  
Blogger Xalpharis said...

How... vague.

Regardless, best wishes to the health of both of you.

7/12/06 7:51 PM  
Anonymous Anonymous said...

Could you take the time to direct me to the post on your weird genetic anomaly ... I'd like to read about it.

I was born with two complete sets of ovaries, uteri, and the rest of the junk. So I am curious. Unless you've never talked about it before. Then, nevermind.

My oldest daughter had ovarian cysts at age 14. The gyn said it's quite normal. I hope that helps and that that is all it is.

7/12/06 9:18 PM  
Blogger margalit said...

Java,

I've never posted about my genetic abnormality before. It's a mosaicism called 46xx, only mine is 46xxxxxx, which is basically that I have way to many Xs on the 46th chromosome, and that is the genetic marker for chronic aborters. Miscarriages are us. When the Girl was an infant, we had her tested for this marker and she does not have it. But she's got something, and it might be a clotting factor disease. We just don't know yet.

7/12/06 9:23 PM  
Blogger margalit said...

JoeLucas,

We're going to see the surgeon to see what he has to say, but we've already had a second opinion, that of the specialist. Children's in Boston is the top pediatric hospital in the world on a consistant basis, and we live here in the frozen north because the medical care is so much better than elsewhere. But you bet that I'll be discussing this with her pediatrician and another surgeon we know before we do anything.

7/12/06 9:25 PM  
Anonymous Anonymous said...

Holy Crap ... I'll keep watching and hope it gets resolved soon.

I don't know what a mischeberach is but I'll be sure to say a prayer for her often.

Don't freak out. I know, I know, it's easy to say. I think you just need to find the right doctor. Not an easy task to be sure.

Take care of yourself during this process.

7/12/06 9:27 PM  
Blogger gordaboo said...

The girl is in my prayers. Be strong and know that everything will be fine.

8/12/06 1:49 AM  
Anonymous Anonymous said...

My thoughts and prayers go to your girl and your family. She's facing something that most women don't face until much later in lives (or never at all)...

I hope that all will be well.

10/12/06 2:35 PM  

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