Dental Doomsday

I "SHOULD" start doing things in order, more consistently, on time....wait, that would mean I had my shit together, which I clearly do not.

So much has happened that I have a retroactive list of things I need to blog about. Can you do that? Well kids, it's happening. I will start with the most recent, and most ridiculous.

Because of Ehlers- Danlos (MOFO) I need to have my teeth cleaned 4x a year. Yes, 4. All the water pik's, super floss, scope, flex-brush, dental dams will not save me. And like I have said before, I can't have a busted grill.

After sitting with the Orthodontist last week for an hour, here was the takeaway:

1. Are you under any stress? - No sir, none at all.
2. Try knitting or reading the Bible before you go to bed, it will help you sleep. If that doesn't work, take some narcotics.
3. Also - watching the history of Egypt is also good for snoozing.
4. I recommend two "splints" (two huge custom mouth guards) to be worn all day. Yes, you may speak with a bit of a lisp, but you will learn how to minimize it.
5. These splints are not covered by insurance.
6. For both, we can cut you a break, $2015, no payment plan.
7. Did I mention these are not covered by insurance?

Final thought, and I quote: "After reading your medical history - I have say - you must be REALLY angry at God"

And that is when I left. I cried in the stairwell for a good 5 minutes. Then I called Matt and cried some more. Then I came home and had a beer and started grinding my teeth because of the stress.


Next week will be better....no it won't stupid - glass half EMPTY bitch! (My inner voice yells this in Tourette - like tics from time to time - I try and tell that voice to STFU)

This week I call my Dentist, the one with the rumbly tummy? I say - hey man, it's been rough, my insurance won't cover ANY of my dental stuff and I just need a cleaning ( the one, the ONLY thing my insurance seems to cover me for) can you help a sista' out?

"Kate, I see you have an appointment on Friday, I don't think that is such a good idea"

And this is where Dental Doomsday continued. "Because of your "syndrome" I just don't feel comfortable - its really in your best interest."  Um, Doc - I just want my teethers cleaned!  "Go to a periodontist - they can help you" Um, I did and my insurance does not cover it Bro, and $165 - I just aint' got that kind of cash. (Ok so I didn't really get all ghetto on him, but it sounds better than trying to effectively convey my "on-the-verge-of-tears" voice.)

"I wish I could help, but I am but a small family Dentist and with your "syndrome" (interchangeable with cooties) you are just far to COMPLEX for me. Maybe try U Penn.

So, the final takeaway?

-Dental Doomsday rages on...and on....and on....

-U Penn for a dental cleaning? I might just get some scope, a safety pin, rubber gloves and some bubble gum toothpaste and call it a day.

- Dental insurance is not a real thing, its like a unicorn - they make you believe it exists, until you actually need one - like "Hey I need to ride into the enchanted forest and rescue the forrest animals, where the HELL is my unicorn??"

-Plastic hardware + lisp + broke ass from paying for hardware = a very bad time.

Did I mention that last week Aidan went to the dentist and has 4 cavities, one needs a crown and possible extraction? No, I will save that gem for another day.

Remember to floss kiddies...

Holter Monitor Happy Hour

So I go to my Cardiologist for the 3rd time this month, I found out they have a frequent flyers club. I'm not sure this is a club I want to   belong to....

They "conveniently" schedule to put on your Holter (Heart) monitor at 4pm, the very start of Happy Hour. I'm not sure if this is meant to be a cruel joke...at 4pm on the nose I get "hooked up". For the next two weeks I will have the pleasure of wearing a brick with wires on my hip. Don't worry, they gave me a fanny pack, you know - to camouflage it. Thanks guys, I appreciate the 1989 throwback! 

It's bluetooth. It works over cell towers. It is STILL a brick.

When having an "event" there is a button, labeled "event" that you are supposed to press...really guys?

Could I have had this during the winter where comfty wool sweaters do one better than the fanny pack? No. I can have it on Memorial Day weekend - I can get burn lines in the shape of small circles where the leads attach. It's like a cruel knock off of those little stickers you could put on while tanning - because a little tan heart is wayyyyyy cuter than sunscreen.

I'm totes looking forward to this weekend.

Real life Elastigirl

The floodgates I mentioned earlier? They opened on April 8th, 2013, and we were in no way ready for what they unleashed on us...In my many failures at this thing called acceptance, I've decided I can't keep ignoring the Zebra in the room.

So buckle up, hold onto your hats, the show is about to start. And it goes a little something like this...

Dr. You are  overly flexible and hypermobile, did you know that? In all of your joints.

Me: But I can't do a split?!?! [confused]

Dr. There is NO such thing as double jointed, that thing you do with your fingers is actually called a swan neck deformity.

Me: Deformed?

Dr. The way your hands splay out like that, is actually called the flying bird sign.

Me: What is this, birds, swans?

Dr. Can you touch your thumb to your forarm? There is no name for that one, sorry.

Me: Yes???

So begins the fall down the rabbit hole. All of these strange "nothings" I had had my entire life, suddenly became big somethings. 

Dr. - You have Ehlers - Danlos Sndryome

 - It is a genetic condition, you have had this your entire life

- It is a connective tissue disorder, your body makes defective collagen

- The "glue" that holds your body together does not work

- You have all of these orthopedic injuries, not because you did anything, it's what your body didn't do

- Connective tissue is everywhere - skin, muscles, ligaments - so in addition to all your joint problems, it affects the valves in your heart, your eyes, your skin, your teeth - and did I mention every single one of your joints?

- The TMJ you have? It's from EDS. The condromalcia and fat pad impingement in your kneee? EDS again! The herniated disc and degenerative disc disease in your spine? EDS. That heart murmur? It's from EDS too, but actually you have Mitral Valve Prolapse. Your "hip popping?" That is also EDS, and it's less popping and more subluxating [ fancy word for partial dislocation].

- Your skin is thin, fragile and bruises easily, a lot like white tissue paper

- It is passed on in a autosomal dominent manner, which means you are not a carrier, and only you need to have the (defective) gene to pass it on. All of your children have a 50% chance of having EDS. Have you thought about having kids yet?

-  Did I forgot to mention, there is no cure...

My head is spinning, the tears are running, thoughts are racing, anger is mounting...FINALLY we know. Finally, the question marks start to disappear. Cancer, Check. Lyme Disease, Check. Weird Genetic Disorder, Check. The trifecta of strange, awful and bad luck is finally complete. 

The Dr writes out the geneticist, cardiologist, dermatologist and opthamologist who "can help me." Was I surprised? Well yes, a genetic connective tissue disorder, at 29? I would have been LESS surprised to hear he BIG "C" again. But here we are. And here I am: The real life Elastigirl,  I'm still waiting for the awesome costume and cape.  Maybe being a super hero isn't all bad....

Until next time....

If you want to learn MORE about Ehlers- Danlos: http://www.ednf.org/