• 11Feb 09

  Freakin' Your Freak

  Yup, I'm still alive. And happy to see that you all (everybody) are still in the land of the living as well!
  
  
  That is all . . . . for now.
  • Posted Feb 11, 2009 8:25 pm PT
  • Category: Other
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• 28Dec 07

  Long Story

  So, I haven't been around for a while. You may not even remember me. You may not really care. But I thought I'd share my story anyway.
  
  11 years ago, before I got married, I started having some "female" problems. Mostly a bad constant pain in the left side of my abdomen. There's more to it, but I'll spare ya those details. Anyway, I finally found a doctor interested in helping me, and he did a laparoscopic surgery. I was 18 and newly married, so he didn't really tell me that he was expecting to find endometriosis. The surgery revealed nothing. Nothing at all. So he put me on birth control pills, and things eventually got better.
  
  Flash forward a few years.
  We decide we'd like to get pregnant, so I go off the pills. We try and try, but to no avail and eventually the pain & other symptoms come back. I was heartbroken. I went to a different doctor, and he couldn't really do anything for me either. So, dammit!
  
  Eventually, I did conceive. We had Little3 almost five years ago, and I was symptom free for a long time after. Then I went on birth control pills a year ago and had a bad time of it. When I stopped taking them, the pain came back and was bigger than ever.
  
  A third doctor ordered an ultrasound, suspecting ovarian cysts. Sure enough, there they were. And my left ovary was twice its normal size. So I went back to doctor #1 - who had delivered Little3 - and he did laparoscopy #2 to remove my ovary on September 27. This time, there was endometriosis on the outside of my ovary, and that's why it was enlarged. Everything else looked okay. No endometriosis anywhere else, but my uterus felt a little soft. This suggested adenomyosis, but he said he couldn't be sure unless he removed my uterus and we weren't ready for that. I'm happy. Finally the mystery-pain that has haunted me for more than 11 years was gone.
  
  Wrong.
  
  Less than a week after surgery, I had pain again. So I looked up "adenomyosis" and found out that that's just endometriosis eating away the inside of the uterus rather than the outside.
  
  Less than a month after surgery, my hubby and I went back to my doctor. He told me about a drug called Lupron. Scary ass drug, and it only buys you a little time. So we decided on a hysterectomy.
  
  December 5, I had a laparoscopic hysterectomy. He took my other ovary, just so I wouldn't have any more problems or surgeries. I came home the next day, feeling pretty good.
  
  Then on the 8th, I got up to tinkle and had some SEVERE pain. Like, off the charts. Screaming in agony. It was horrible. I suffered most of the day, then went to the ER.
  
  I got treated like a junkie looking for a fix. After 7 hours, x-rays, pelvic exam, and a CT scan, they sent me home with a diagnosis of constipation. They said that the pain medicine I was taking was keeping me from going. Whatever!
  
  The next day was Sunday, and I still felt like hell. Going potty was agony. Literal agony -- I'm not exaggerating. I couldn't walk upright, I couldn't breathe, and I couldn't eat. Then the swelling started.
  
  Under one of my incisions, on my left side, there was a collection of fluid the size of an orange. By bedtime, it was like a football. This can't be good.
  
  The next morning, I look like I'm six-months pregnant. No joke. I called my doctor's office and got an appointment for that afternoon. He thought it was probably a hematoma, but the ultrasound was baffling him. I went into surgery that night. Again. Laparoscopy #4 (the third in two months) revealed that I had a hole in my bladder. My body was full of urine, and it had broken through my abdominals and was filling out my saggy belly skin. Lovely.
  
  What had most likely happened was: during the hysterectomy, he was detatching my uterus from my bladder and cauterized a bleeding blood vessel too deeply and damaged the tissue. It takes about 3 days for that tissue to slough off and then the bladder ruptures. My hole was the diameter of an ink pen.
  
  My doctor was SO apologetic. I actually thought he was going to cry when he was telling me what happened. I wasn't upset. Accidents happen, and there are risks with surgery. It really could have been worse.
  
  So, he fixed me up and I had to wear a catheter for 11 days. Eleven LONG days. I can't describe how uncomfortable & humiliating those 11 days were. The whole experience was pretty embarassing. My darling husband even called me "Miss Peebody". Ain't he sweet.
  
  I got my catheter out the Friday before the Christmas weekend. I felt instantly better, but it turns out that I have a bladder infection now. No biggie, just another week of antibiotics and I should be as good as new. Better, even.
  
  Hormone replacement therapy was the thing I dreaded most of all. Surgery never scared me. It turns out I was wrong all the way around. I haven't had a single hormonal problem. I ended up losing another 8 pounds after the bladder surgery, bringing me down to 145. I'm now 50 pounds under my pre-pregnancy weight. I gained a lot of weight when the pain first started 11 years ago. Now I weigh less than I did when I graduated high school. And I haven't even worked out since September.
  
  The endometriosis was sort of toxic. I just felt wrong. It was a lot like being pregnant, but with pain and no happiness. Now that it's gone, I feel like a new woman. Like I should have felt when I was younger.
  
  They say what doesn't kill us makes us stronger. I don't know if I feel stronger, but I definitely have better perspective. I appreciate the little things more. Little things like . . . peeing into the toilet.
  • Posted Dec 28, 2007 10:00 am PT
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• 19Sep 07

  Autism Is Not A Disease -- amended

  It's not an infection, and there isn't a cure. Autism is a neurological disorder.
  
  From autism.com :
  Many autistic infants are different from birth.
  
  In the first few years of life, some autistic toddlers reach developmental milestones, such as talking, crawling, and walking, much earlier than the average child; whereas others are considerably delayed.
  
  Approximately one-half of autistic children develop normally until somewhere between 1 1/2 to 3 years of age; then autistic symptoms begin to emerge. These individuals are often referred to as having 'regressive' autism. Some people in the field believe that candida albicans, vaccinations, exposure to a virus, or the onset of seizures may be responsible for this regression.
  
  I tell you all this, because I watched Oprah yesterday. And again was disappointed.
  
  I must admit that Jenny McCarthy did a better job in 20 minutes showing what life with an autistic child is like, than the Autism Speaks people did in an hour. Jenny's attitude was positive, she was smiling, and she clearly loves her son. The same did not come across from the others, who were on Oprah's stage last season.
  
  McCarthy actually educated people on therapy options, and showed America the smiling face of a child with autism. Yes, folks! It actually does happen! And it is a beautiful thing.
  
  Yet my disappointment is in the "facts" that keep getting presented. The story that goes, "My child was developing, hitting the milestones, talking, looking in my eyes, and then after they got their MMR they went away. They were gone. There was nothing."
  
  McCarthy even presented pictures of her son before & after the age of 16 months, to show how his "soul was gone from his eyes". Say wha?!
  
  I am a mother, and I know that no one knows our babies better than we do. So I am willing to accept that these parents have, in fact, experienced things in the way that they say.
  
  But where are the parents of the other half of the autistic children? The children like Little3, that never spoke a single word until well after their second birthday, and several speech therapy and occupational therapy sessions? Where are the parents that accept that their child was born, is beautiful, is struggling, and needs to be understood, not cured? Am I really the only one? ------------------------------------------------------
  ETA: Some better articulation here, although my beliefs are far less extremist than this. I just hope that the information in that article may help a little, in offering another view. And that of autistic people themselves, not just outraged parents of autistic children.
  Oooh! Here's another fascinating article, from the New York Times.
  You can find me in the gray area. I just want to let my son be who he is, and do what I can to help him be comfortable. We did feeding therapy to try to help him tolerate soft foods, so that he could have a healthier diet. No avail, but we tried. Our main focus is on a happy, healthy Little3. We are starting to worry about the "normal" classroom, as Kindergarten looms in his future. But the thought turns my stomach, so I dare not consider it more just now.
  • Posted Sep 19, 2007 8:05 am PT
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