Wednesday, November 14, 2012


Whoa. Does anyone know what happened to the last 3 or 4 weeks, a little over a fortnight or perhaps 2 fortnights of time?!?!?!

Maybe it's called October, but I'd like to call it "Eventgeddon" where everything happens at once and you love it.... Or else!

Things been happenin'. Like Halloween, oh I mean, Harvest time.

Yeah, I ended up framing that second one. I love my kid's face. And shouldn't I?

But what you didn't see- her getting her peacock feathers stuck in a playset on the playground...
We're hilarious like that I guess.

Oh and then there's the fair- which I already posted about.

I just used my "mom spit" to get rid of smears on my computer monitor screen. Awesome.

Hey, so I don't know if I told you or not, but this gal got genetic testing done. Again.

Last time, it was fruitless. This time, it's personal. So when I went to Mayo- 2 years ago in November- thanks my dear sidemate for remembering and caring- dashes-------!!!------ they tested the fibrilin (sp?) gene, aka the most obvious gene for causing Marfans-Syndrome-esque diseases. It came back fine- not deleted, or mutated.

So we thought, meh, and get over it.

Then I went to visit one of my fave ophthalmologists in the whole wide world and I asked him if I should maybe go see someone about my overall condition. I mean, Baylor Eye Clinic has been instrumental by God (Wondering when I was going to drop the Christianity bomb weren't you?) in healing my sight, but what about that stupid hip pain that happened and caused me not to walk. I don't know, I'm not up at night worrying (anymore) about it, but I would like to know if my heart was going to spontaneously rip apart. Don't we all? That's just one of the possibilities for people with dislocation issues.

Talk about heartbreak!

I'm sorry, aortic dissection is not funny AT ALL. Cut me some slack, it's a defense mechanism. PLEASE LIKE ME!

So Dr. Lewis, Flubber inventor, genius that he is, refers me to see Dr. Milewicz, have I already written this already?? Well, guess what SHE'S (Hey Laaaaady!) a genius too who studies weirdos like me. You know, Gonzo's of the world that can't get a definitive disease label!?!?

So I go there with the husby and they are SUPER NICE and don't mind my craziness. Long blog post short, I get tested for my ADAMTSL4 gene to see if it's been mutated.

7 weeks go by and honestly, I forgot about it. There was a possibility for it to come back negative which would mean I would get put into the super-special exome sequencing gene project where they test all your genes to see what up with that?

Yesterday I get a call on my cute, new bluetooth that John (Fix-It Felix) installed in my car that no one can hear what I'm saying, and it's the sweet lady who doesn't realize I'm annoying that is the genetic counselor.  She always intros herself on the phone with me, and I'm all like: "Hey Tracy!"

"Do you have time for a brief conversation?"
Me: Always!
So she tells me that both of my genes (we have copies, watch Jurassic Park) are mutated.

So I ask the idiotic question- I have 2 genes?? And she probably thinks "Bless her heart." depending on how long she has lived in Texas or "Wow, we have to go over this again? I can't believe you're not a geneticist Gillian!" and explains for probably the billionth time to me, yes we have 2 copies...

Then she makes an appt for me to come and ask idiotic questions again with them and understand basically what does this mean for Leelah and her future lineage. In other words, how bad did I future-screw-up her life and the lives of her descendants. That will happen in Dec. 19th- the appt, not the future-life-ruining.

So, y'all ready for what my disease is currently called: "Ectopia Lentis et Pupillae, Autosomal Isolated Recessive." PLEASE VISIT THIS LINK AND READ WHAT IT SAYS- IT MADE ME LAUGH!!!!!!!!!

Meanwhile, she had also referred me to another rheumatologist. Mine flew the coop. Guess when that appt is? MAY 2013.


Yes, my hip has been hurting on and off again.

Wait. You don't know why I keep posting this?? Watch this immediately, please:

Thank you. 

Now, watch this please...

John and I can't stop saying: "IT STARTS RIGHT NOW!"

Look, we are not making fun of that guy. He gets right up outta that water with a smile on his face!!!! After total failure, he completely redeems it with his attitude. I love it. I love him. We love him.

Oh yeah, the hip hurting. Whatever. I take fish oil pills now. I can't really wrap my head around how big those pills are either. Yikes. My morning breath is much worse, BUT my hip pain has been alleviated. PRAISE! It's nothing like it was. It just likes to act up on me sometimes.

So I need to stop writing and start editing photos. I love it!

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