Holey Mole-y!

So back when I could compartmentalize my vast amount of medical issues...wait, no that never happened. Lets try using the old calendar, back in January, my Oncologist said he wanted my itty bitty freckle on my lip removed. Here, I always thought it was cute. Well, after already having Melanoma, getting it again would not be cute, not at all. I said ok and put it on my to do list.

I decided to see a plastic surgeon, who I call Guy Smiley, because let's face it - with the Bells' Palsy, my face was already a hot busted mess. My surgeon told my how wonderfully symmetric and beautiful my face was, you know - minus the paralyzed eye and drooping lip. If anyone knows perfection, it's this guy - I was feeling pretty good up until he said he was going to "punch" out my freckle and stich me up. Wait, no glue? No steri strip? No band-aide? Oh snap.

So in April, I went "under the...hole punch?" He injected my lip and apologized all the while, it was agonizing - As I left with what appeared to be a bad filler job and some blue stitches - non desolving of course, you know - to add to the inconvenience. I came home, the numbing medication wore off and poof - I look like Shrek...

I return a week later to get the hideous stitches removed and be on my merry way. Errrrrrr, nope. Guy Smiley had other plans.  Upon inspection of the pathology report he stated he was "afraid of my genetics" and it needed re-excision. Great. More stitches - come on man, things were just starting to turn around in the face department! He also tells me to get the once over by his broski Dermatologist friend - you know, JIC there were any more "suspicious" freckles. So off I go, stich-less and hope-less.

I meet with Creepy Dermatology Broski two weeks later. Upon entering the room, he ALSO proceeds to tell me how distinguished and coveted my cheek bones, lips and jaw line are, "A lot of women pay me a lot of money to look like you" I wanted to ask if that included the Bells Palsy, or he just threw that in as a freebie? He then talked to me about his love of redheads as he scanned all 3.4 million of my freckles. After the "full body scan" I had but 1 questionable freckle on the back of my thigh, which with a little lidocaine and a scrape - was biopsied. He slapped on a band-aide, told me if I needed anything he was my "personal Dermatologist and I could get in to see him...anytime." He said the results would be back in a week but no news was good news.

A week later, my phone rings. Creepy Dermatologist calling! Your pathology came back and you have a dysplastic nevus that looks to be pre-cancerous. Gulp. Pause.Throw-up-in-my-mouth-a-little. We want to rule out melanoma so we need to re-excise the lesion and see if we can get clean margins. How does that sound?

Pause. Are you fucking KIDDING ME. Listen man, It's been a HELL of a year, to be honest - that sounds like BULLSHIT. But I refrained. Sounds...great Bro. 

I elected to have Guy Smiley give me a two-fer and redo the lip and throw in the thigh while he was scraping and sticking me. Thanks Doc. I schedule my double procedure for May 31st - keeping in mind I would once again have the bad-Kardashian-look for a few days. The day arrives, I am sitting anxiously awaiting the onslaught of injections to numb me up and swell me out. Guy comes in, takes one look at me and says, "What the hell is going on here" pointing to the dreaded Holter Monitor. I explain, he gives me the squint face and long pause. "What, what, WHAT?" I practically yell. Guy responds in typical Guy Smiley fashion, " You are going to hate me but..." Me - Please don't say I have to reschedule, I don't want to come back! At this point I am on the verge of crying or cursing. For Smiley's sake - I hold it together. He reschedules me 2 weeks later, at the convient hour of 7:30am.

This morning I arrive - ready for action! Guy comes in, apologies profusely as he stabs me a total of 13 times in the leg and lip to numb me up. Ding, ding, ding - removal of Kate's  potentially cancerous skin lesions - Take 3!

It's all over in 20 minutes. Guy talks about a tattoo artist he works with doing breast reconstructions who tattoos on aerolas as he sews up my lip. My face is covered in beta-dine and a plastic sheet. I can only imagine what tattooing an aerola is like - as I try and distract myself from the horror I would face if I were to look in a mirror right now. Yikes! I schedule my stich removal for next Friday. Hopefully, Guy is all Smiles next time I see him. Until then...Shrek Take 2  *Warning: Pictures are NOT CUTE*

Pump it up...

Kardashian-esque-Pale-Pucker

The two-fer...I'm a bargin shopper - always

Let the fast begin!

Never have I ever been more un-excited, un-thrilled (yes, these are made up words) and unfilled (this last one is real - and true). For the 3rd time this year I will go "down under" not in the Kangaroo, great barrier reef, and outback way. I will take a glorious Propofol induced siesta as my Gastroentrologist tries to "get to the bottom of things"...literally. Colonoscopy here I come! Wu-hoooooo

Let me count the ways in which I am enjoying my fast...oh wait, zero. It is only 10 am and despite eating left over gluten free pancakes at 11pm - I am starving. I have 30 hours to go until I can scarf down anything that does not go through a straw. A popsicle is not solid food - STOP the lies! Jello doesn't count when you have to eat the green flavor! Ok, ok deep breaths. 

Top Ten Prep Steps:
1. Do NOT watch Food Network
2. Do not go to the grocery store
3.Lay on couch and pretend not to think about food
4.Drink gatorade and veggie broth, and BULLSHIT popsicles
5. Avoid the kitchen like the plague
6.Crochet - except I crochet miniature food, last night I was working on a doughnut, scratch that plan.
7.Forbid the use, by all family members, of the downstairs bathroom
8.Stock said bathroom with various entertainment: ipod loaded with Enya, magazines, a nice candle
9.Avoid Facebook, Twitter and Instagram - food porn is rampent and no good for your fragile state
10.When you are done, start over at #1

Congrats Kate!!! - you have survived hour 1 of 30. Just keep swimming...

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......