Sunday, 22 August 2010

Dentist update

Its been a few days since i had the dreaded dentist. Im slowly starting to remember things that i had forgot,silly little things really. The car ride up there managing to smoke nearly 6 cigerates in half hour, i feel sorry for the dentist as i didnt have any mints with me,which will explain why my lungs feel like i have been in a fire. The look on the sedative persons face when she asked about my medical history, hehe classic “what???” then having to explain in lamemans terms what EDS is and how it effects me. My dad rolling his eyes when she asked me how to spell it. The dentist warning me that if i am violent or abusive again he wont treat me. Honestly it was only once or twice.

I could finally feel my nose nearly 2 days later. I can smile normally, or what i count as normally its been a long time since i had the confidence to smile. Thanks to a addiction to energy drinks most of my front teeth had started to rot. So i stopped smiling. It feels weird to start again. A nice weird though. My teeth are super sensitive, i must be the only person to carry a straw around with me so i can drink without pain. Its slowly getting better, i had ice cream today which killed but was so worth it.

My partner goes back to work tommro. His been at home for a week as he had to use holiday up. Its the longest we have ever spent together,gonna miss him when he leaves tommrow. But will be nice to have time to dance around in my undies without him thinking im mad.

Monday, 16 August 2010

Demon dentist

I had the dentist today which went better then i thouhgt. i had visions of it being more like this :

luckly the sedation went really well and within 3 hours i was on the way home. It took over 6 hours for the numbing stuff they used to wear off. 6 hours of not being able to feel my nose, why my nose in not sure but it was completly numb. Everytime i smiled i looked and felt like i had-had a stroke, my left side of my face wouldnt move.Parts of it was twitching.
well im off to watch a film. With candles i really am spoilt sometimes!

Sunday, 15 August 2010

You might have EDS if....

You might have EDS if...
You have ever been kicked out of a doctor's practice for being too high maintenance.

You don't drink, but you still have more "mystery bruises" than a perpetually drunk frat boy.

Your medical records contain any of the following terms: "hypocondriac" "drug-seeking behavior" "munchausen by proxy" or "psychosomatic"

Any of your funniest stories start with "when my doctor first gave me (insert medication here)..."

Your doctor has ever uttered the phrase "THAT'S a new one!"

You are convinced your doctor should be paying YOU for teaching him about EDS.

You envy college students for the amount of sleep they get.

You never understood why everyone kept complaining about that 'one spot' on their back they could never scratch.

Your number of (wrong) diagnoses outnumbers your age

Medical students flock in the room to OHH and AHH

Your doctor asks you to perform "tricks"

Your prized possesions are your wrist braces.

You have to remind yourself not to hyperextend your knees when you stand for any length of time.

The only gym test you ever excelled at was sit and reach.

Freezing cold hands and feet in the summer, not to mention seasons when it is actually cold.

"I can only deal with one issue per appointment".

You hate the days you've got to get up before 11 am.

"We can't link your pain with the fatigue" - two years later - "Yes, fatigue is very common with EDS"

You take joy in doing your "tricks" to scare people.

You sit in gym and wonder how in the world people can be running and not limping or crying.

The more time you spend around normal people, the more things you find "wrong" with you.

You've never had anyone complain that you're not flexible enough in bed!

You've seen more doctors than you can count on your hands or feet.
Your partner/spouse lays down in bed first, arms open. You rearrange around them. Then they ask, "Where can I touch you?"

Your rice crispies aren't the only thing that "snap, crackle, and pop" in the morning.

Your list of symptoms is longer than the monthly grocery shopping list..

You've heard your mom say too many times to you, "Don't sit that way, Just looking at you makes MY joints hurt." and she gets a blank stare in return.

if you keep you symptom list and medical history on your laptop, so you can print it out for the doctor of the week, since you can't remember what happened when.

If you have tried to wash off a bruise, 'cause you didn't process what it was, and then stood in the shower staring at it stupidly.

When you have a hard time losing weight because all 20 medications you are on, say to take with food.

I i realized it wasn't normal not to be able to put sun block on your back yourself?!??!?

When the doc says 'EDS, you can’t have that, that’s only seen in text books.'

When zebras bring on a whole new meaning...

When you write down all your meds on the forms in the doctors office and realize there is not enough room to fit them all...then that same doctor says "You are so young to be on so many different medicines."

When the first thing every doctor asks you is "do you have a good pain management doctor?"

And then the last thing they say to you is "you need a good pain management doctor."

You carry a printout from Wikipedia so you don't have to explain EDS yourself.

You've had more sprains than anyone you know.

You fine a new bruise everyday.

When you do a "cool trick" your classmates are either disgusted or think its cool.

You're older than you look, but younger than you feel.

You've ever had to research medical journals or websites to find out what the "normal" range of motion is supposed to be in a particular joint.

You've ever looked at a picture of someone with a broken or dislocated joint and had to ask what the problem is because it just looks "normal" to you.

You come out of the Dr.'s office feeling as if YOU'VE done something wrong.

Your doctor gives you a stare and then raises their eyebrows in surprise when you tell them about your disease!

When you barely hit a part of your body on an object and you have a bruise for 2 weeks.

"You can't have all this pain at your age. Do you want to be labeled with chronic pain at your age?”

Your body parts go out more than you do.

What about you see a picture of what someone with EDS can do and then go try it, only to discover you can!

When you KNOW you can't do something considered normal, but can do all kinds of things considered abnormal!

When you wake up at 6, still tired, aching all over and go ahead and get out of bed just because it hurts to lay there.

When you get up at 6 and don't get dressed until noon.

When all you appointment books have late afternoon appointments because mornings "just ain't happening."

When you read these statements, totally relate to them, and laugh when you feel like crying because they are all true....

You dislocate one ankle sitting on it and promptly dislocate the other couple hours later same way.

If you've ever heard, "Uh huh, well, *I've* never heard of that," in a disbelieving and condescending tone from a nurse; you might have just told them that you have Ehlers-Danlos. "Yeah, riiight, how do you spell it?"

Your pill box resembles a pharmacy.

People say they know what it feels like to be irregular occasionally but they don't know what its like to be regularly irregular

You have pills in your bag, next to your desk, on your bed side table, at your mothers house, and others sprinkled around for emergencies. (You never want to walk that far.)

Simultaneously amazing and sickening a yoga instructor at your first yoga class. She doesn't believe you when you say that you haven't taken yoga before.

You are confused when someone asks, "Don't you hate when you get that itch you just can't scratch?"

They mention Ehlers-Danlos Syndrome on "House" or "Bones" and you scream "YESSS! WAY TO REPRESENT!" and high-five your roommate.

The retirement home folks on the city bus find out about your physical maladies and inevitably tell you "Sweetie, I know just how you feel" and you're at least 60 years younger than them.

~taken from Facebook group Ehlers Danlos Syndrome

A new start

So i have decieded to start up a blog on my life with Ehlers-Danlos Syndrome. Somewhere i can be me , share my thoughts and feelings, and learn to deal with living with a condition i know is not going to get any better and may leave me in a wheelchair or bed bound before i am much older.

i will be changing the name as at the moment i cant for the life of me come up with a witty site name.