Has THIS happened to you too?!!

[Guest guest]

It NEVER fails...with all my spine surgeries and other surgeries, I get a

steady stream of doctors, especially residents and interns, who are

NOT even connected with any of my own surgeons! I have always been

patient and understanding of the fact we are SO unique, and their first

experience with a living breathing Little Person, but there were times

I felt as if I had a revolving door to my hospital room! I even had

some doctors bring in groups of their medical students on rounds to see

me! And ALWAYS at the most inconvenient times of course.

I have also run into this kind of stuff with occasional doctors'

appointments too. Like I heard an wonderful LP say on a talk show once, " we

live with the same invasiveness celebrities do, only

WE don't get the same perks they do! "

I cannot possibly be the ONLY one here, who has ever encountered this

type of medical " notoriety " along the way, and would love to hear about

your " fun " (yeah, right!) medical experiences.

Oh my...you know, I probably shouldn't even share this, but here I

go...when I was six many decades ago, I was admitted to a Catholic hospital to

have my tonsils out, and to also have ear surgery. Well back THEN, all

you could see of the nuns was just their face, and the rest was all covered

in black. Being the charming cute little impressionable child I was who had

recently seen the Wizard Of OZ, those nuns had the Wicked Witch Of The

West written all over them, let me tell you...and ONE

OF THEM BEGAN TO COME AT ME WITH A SYRINGE a MILE long!!! When she came

at me I somehow managed to slip between the bed and the wall to the floor

under the bed. Two other nuns came in to assist, but oh, was I ever GOOD!!!

I managed to

allude them all and get into places they couldn't, those poor

dear ladies. Unfortunately, they didn't think to shut the door

to the room when this all began happening, and as soon as I saw

my chance, I tore out of the room and began running down the

hall with three nuns in pursuit and other patients cheering me

on. Near the end of the hall a fourth nun appeared and managed to capture

me, and I am sure those dear ladies had to be thinking

about their career choice after that. My heart really goes out to them

now...but oh, did everyone ever love seeing this little kid with three nuns

and one HUGE syringe in pursuit.

A thousand pardons for sharing that, because it really doesn't apply

to my original topic to share with each other and even brighten your day

too. Whatever. Jump in and share your hospital experiences

of being " studied. " You know, I could never understand how in these HUGE

major hospitals, word gets out about an LP in some faraway ward, who just

happens to be a patient, can you?!! Oh my, the " fame "

we have...cof cof cof

Adelaide

[Guest guest]

Well when I was hospitalized for divertculitis, my PCP (HMO assigned and I'd

never seen before) kept asking me if my dwarfism had anything to do with the

diverticulitis and why was I anemic?

I kept saying I don't know, you're the doctor!

Actually I've never had the " crowds of curious doctors " except for when I was

born.

They knew I wasn't achondroplastic, but they weren't sure what I was (1964).

Several doctors looked me over during my first 2-3 days on the planet and

between pediatrics and orthopedics the final word, delivered by one of the

orthopedists was " we don't know what type of dwarfism she has, she will probably

not reach 4 ft tall, take her home, love her and grow her. "

The pediatrician they called in became my regular pediatrician who took care of

me until I was grown and then took care of my niece until she was grown. He is

a doll and was the best in the business.

-marty (the lady one)

**********************************************************

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[Guest guest]

Yep, but for me it's related to having OI.

Several years ago, my daughter (who also has OI) had a fracture and I

had to take her to the children's hospital ER. We were in the waiting

room, and suddenly a doctor (resident) runs over to me, all excited,

bends down and says: " Wow! You have OI, right? I've never met an ADULT

with OI! I didn't know you could survive into adulthood! " Of course, all

eyes in that waiting room turned to ME. If I recall correctly, I think I

said something to the effect of " You're surprised because your textbooks

are hopelessly outdated, only dedicate a paragraph or two to the

disorder, and leave you with the impression most of us have the lethal

type, and are dead within a few years after birth. "

And THAT is why is it almost impossible for adults with OI to get decent

medical care, even from orthopedists.

TG

BASHUM7894@... wrote:

> It NEVER fails...with all my spine surgeries and other surgeries, I get a

> steady stream of doctors, especially residents and interns, who are

> NOT even connected with any of my own surgeons! I have always been

> patient and understanding of the fact we are SO unique, and their first

> experience with a living breathing Little Person, but there were times

> I felt as if I had a revolving door to my hospital room! I even had

> some doctors bring in groups of their medical students on rounds to see

> me! And ALWAYS at the most inconvenient times of course.

>

>

--

Twirly Girly: Champion of the Misquoted and Misunderstood (cape not included)

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forbidden.

[Guest guest]

After eight years, I finally have an appointment with a genetics doctor

at medical center specifically for children. I've never been there

before so I had to have a lengthy " registration " phone conversation with

the receptionist.

During our conversation, she asked my year of birth and when I replied

" 1966 " there was a lengthy pause on her end. Finally she asked in a

soft, child-like, quizzical voice: " You're 44 and making an appointment

for... yourself... at a medical center for... children?

Me: " I'm a dwarf. I'm 4'9 " tall. "

Receptionist: " Ohhhhh.... I see. Our earliest appointment is late August. "

I don't mind waiting six months. Children are the priority. But I'm on

the cancellation list. :-)

Cheers!

Zen

[Guest guest]

Now how did you manage to get them to see you? It's next to impossible

for adults with OI (well, at least it's been impossible for ME) to be

seen by a pediatric orthopedist, even though they have the most

experience in treating orthopedic problems in people who have OI. The

adult ortho's know very little about OI, and worse - now they're all

specializing either in certain areas (like sport's medicine) or specific

areas of the body (hands, hips, knees, etc.)

Since my bones are more like those of a child who has OI, I always felt

I would get the best treatment from a pediatric ortho who treats kids

with OI. But how do I get one to agree to accept me as a patient? What

if they only have surgery privileges at a children's hospital?

I have some serious problems that I need to have addressed, and I've

been putting off having anything done about them because I can't find a

doctor I have *any* confidence in. Every one of them has told me they

haven't done what I need done on a person with OI before...and the LAST

thing I want is someone going at me with power tools who has NO idea how

my bones will react.

TG

ZenCatShadow wrote:

> After eight years, I finally have an appointment with a genetics doctor

> at medical center specifically for children. I've never been there

> before so I had to have a lengthy " registration " phone conversation with

> the receptionist.

>

> During our conversation, she asked my year of birth and when I replied

> " 1966 " there was a lengthy pause on her end. Finally she asked in a

> soft, child-like, quizzical voice: " You're 44 and making an appointment

> for... yourself... at a medical center for... children?

>

> Me: " I'm a dwarf. I'm 4'9 " tall. "

>

> Receptionist: " Ohhhhh.... I see. Our earliest appointment is late August. "

>

> I don't mind waiting six months. Children are the priority. But I'm on

> the cancellation list. :-)

>

> Cheers!

> Zen

>

>

> ------------------------------------

>

> ===

>

[Guest guest]

Hi TG,

Oh, hun, I feel for you. I've tried just about everything under the sun

to help with OI and pain from fractures in general. <sigh>

With less than six weeks before my insurance runs out, I begged my

primary care doctor to refer me to a genetic doctor who specializes in

children. I admit, I played the " 14 month old granddaughter card. " I did

it because her pediatrician says she's " going to be petite. " My daughter

(Pixie) is not a dwarf. She's 5' 3 " , so I'm cautiously optimistic - so

far. <touch wood>

I was nice but calmly and firmly begged him to help me. It took 2 hours

to convince him -- he is familiar with dwarfism but it's not his area of

expertise. Even then, I had to have his physician's assistant (a

delightful lady with a heart of gold) call the medial center and confirm

I wasn't lying or trying to avoid the backlog of AP patients at the

adult medical center. WTF? Sorry. That got my goat, so to speak.

I also have horrible balance due to being born a " blue baby " -- cord

wrapped around my neck -- and (no surprise) hundreds of ear infections.

I often walk into walls and fall off curbs, though I really try to be

careful. Pulled muscles and bone fractures are " normal " for me. I'm

recovering from two hairline fractures now -- my nose and my right

pinkie finger. I fell into a wall -- again. <sigh> I use a cane and a

walker but am looking for a good, used wheelchair at thrift shops.

Hugs!

Zen