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/

A random alphabetical sampling : Doctor Style

Letters A - E

Instead of writing another bitch fest about all the Doctors I have seen  – I decided to do us all a favor and just make a nice and neat little list. Please feel free to use while teaching your little ones their ABC’s, because of course A for Ass-hat is far more interesting than apple.

A – “Ass-hat” the doctor that spends 3 minutes and 28 seconds with you and tells you “it might just be …..(insert random catch all DX here, depression, fibromyalgia) and sends you to pay your $50 co-pay while your head is still spinning from the fact that this person went to medical school AND has a license to practice. The ass hat: totally and utterly useless.

B –“Bitch” the doctor who believes that her bright pink Dansko clogs are so “cute” and when you list your symptoms, you are unsure if she is listening or thinking about her need for a pedicure before her vacation in St. Barts.

C – “Cardiologist” Dr. Love. I mean what can I say here? “Lay flat, open your shirt and ignore my cold hands …”

D – “Dentist” I love my dentist, he is like the Santa Clause of teeth. Rosy cheeks, a round tummy I often hear gurgling as Mr. Thirsty takes care of my drool. Now that I will be seeing him for cleanings 4 times a year, I’m glad we both understand that under NO circumstances can I have a “busted grill” – aint no way.

"Dermatologist" The guy that gives you thumbs up or thumbs down on your SPF application technique. Freckles stop looking like spots and start looking like question marks. This one ok? This one look different? This one might look 'suspicious'? Do yourself a favor, listen to Baz Luhrmann..."If I could offer you only one tip for the future, sunscreen would be it."

E – “Eeyore” This is the Dr upon walking into the room, you wonder if he is the patient? He looks more sad than whatever brought you to his office. You suddenly check for the trademark tail nailed (or more appropriately, sutured) to his white lab coat. He talks like Ben Stein and you try and cheer him up. You leave wondering if you should charge him for a consult.

Until next time…..

A change of venue....

I suppose I should have done this a few weeks ago - but surprise, surprise, I can almost ALWAYS find something more important to do when I need to be doing something important. Make sense? Ya, me neither. In any event here I am.

My last update/blog/help page's format....well just plain sucked. I hated the way it denied my use of spaces and the return key and made it one big block of unsightly text. YUCK. As an English major - I just can't be havin' NONE of that. So again, here we are. "Living and Lyming" has morphed into more of, "Leaving Lyme Behind" if you will. However when one door closes, a window - more like a floodgate opens somewhere else. My Medical Mystery tour is still going from doctor to doctor, city to city - with little end in sight - look for tour dates. I figured I would share my experiences - for better, for worse...and all thats in-between. 

Enjoy, sit back, and enjoy the psychedelic, sometimes tragic, mostly a pain-in-the-ass, strange, weird and sometimes scary.....Medical Mystery Tour

 Enjoy the (shit) show......