Monday, March 26, 2012

My 16yr Old Daughter, Fight's Like A Girl

I haven't really talked about any of my children on this blog yet, so I'm going to take today to introduce you to my youngest child, Courtney.  Courtney is 16 years old, and at the age of 15yrs 1mo old, she was diagnosed with PCOS.  PCOS (Poly Cystic Overy Syndrome) is another one of our wonderful invisible illness'.  I do believe that Courtney also suffers from Fibromyalgia, and I'm getting ready to start my research of trying to find a good rheumatologist that treats children.

Shortly before Courtney (who prefer's to be called Court) turned 15, she started getting sick.  She started having horrible stomach pain.  She was tired and lethargic.  Her muscles felt weak and ached, and she'd get muscle twitches and charlie horses.  She had constant headaches, and sometimes felt dizzy.  She was nauseous a lot of the time, and lost her appetite.  She had (has) trouble going to sleep at night, and became depressed. 

Our adventure led us to the family doctor, who ran test after test.  He seriously ran almost every test imaginable.  Even ones where she had to drink contast that made her throw up.  She had everything from blood tests, to urine tests, to imaging and ultra sounds.  The final conclusion after months of testing, was that she has PCOS.  The ultra sound showing several pearl-like strands of cysts on both ovaries was the final piece of the puzzle to her diagnoses.  Like I said above, since I've been diagnosed with Fibromyalgia and learned about this beast, I fully believe her to also have Fibromyalgia in addition to the PCOS.  She also was diagnosed as having depression.  -Yet another invisible illness to deal with.

I was searching for a photo of Court, that I had taken of her in the hospital one time after diagnoses, but of course I'm not seeing it in my hundreds of photos that I have on my computer.  One of her cysts became very large, and ruptured.  She was in so much pain that she was laying curled up on the bathroom floor, crying and asking me if she was going to die.  She was white as a sheet. Talk about breaking a mom's heart.  After she'd been at the hospital for awhile, all of the fluid from the ruptured cyst moved up into her chest cavity, causing excruitiating pain in her chest.  The poor kid was on I.V. morphine for about 4 hours. 

The people who have heard of PCOS without being afflicted with this condition themselves, say "Oh yeah, I've heard of that.  It just causes some cysts on the ovaries.".  That statement can be infuriating to a person who suffers with PCOS.  It's so much more then that.  In fact, a lot of people who have PCOS doesn't even have ovarian cysts.  The name can be so misleading. There's a gauntlet of symptoms and a person may suffer from one symptom, to many or all of the symptoms.  Unfortunately for Courtney, she suffers from a massive list of them.

Everyone has heard of diabetes, right?  Everyone has heard of heart disease, for sure.  Most everyone has heard of endrometrial cancer.  Everyone has heard of depression. So why then, hasn't everyone heard of PCOS?  PCOS can cause any one of these above conditions.  PCOS is the number one leading cause of female infertility in the U.S.  It can cause cysts, but as you can see, it also is a whole lot more then that.  Babies born to women with PCOS are even at a higher risk of NICU stays, then babies born to mothers without PCOS. 

My daughter, who should be enjoying the best years of her life in high school right now, is now homeschooled.  She takes her classes through our school district, in an online format.  She's a beautiful singer, who was part of our high school show choir.  Unfortunately, our director didn't know a thing about PCOS and apparantely wasn't willing to try to learn anything about it.  Therefore, if Court wasn't quite as peppy as she should be at a practice, or if she was having a really bad day and just couldn't make it to practice that night, she was yelled at infront of the whole group for it.  Courtney finally had enough, and had to give up her one real joy at the end of the 1st semester this year.  Here's a photo of her doing one of her solo's last year:

She loved the dinner theatre they held, and was so excited to get out there and perform for the crowd.  Here she is before she took the stage, along with my parents:

PCOS may have put a few road blocks in Courtney's path, but it hasn't stolen her spirit or personality.  She's still the same beautiful, goofy teen-aged girl that loves spending time with her friends. 

My oldest son, Cody, is an amateur MMA fighter, with a 7-state ranking of 3rd out of all of seven states. September is the national awareness month for PCOS, and we're hoping that with Cody's help we'll be able to get a huge all female fight scheduled, with the name of the fight being called "Fight Like A Girl", to raise awareness of PCOS and to raise funds for research.  Here's Cody at one of his fights:
Cody is the one on top, winning
  See, research is really needed for PCOS.  There isn't a cure.  There isn't even a treatment plan really.  Some doctor's throw some birth control pills at you to try and help with the symptoms.  Some doctor's throw metformin pills at you to try and help with the symptoms.  Depression meds may be prescribed.  That's about it.  If money can be raised for depression, heart disease, diabetes and cancer then why can't it be raised for PCOS research?  Again, PCOS can cause any or all of these complications.  I bought a new teal colored shirt a few weeks ago, and today I'm wearing teal for my daughter.  I'll leave you with a very poor quality video of Courtney and the show choir group doing the opening song of the dinner theatre, in case you'd like to watch some real life "Glee" today. They're doing the song "Don't Stop Believing".  That's a motto that Court and I both live by.  Please be patient.  The lights finally come on at the :55 mark, and the camera zooms in on Court around the 1:07 mark.

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