Re: UUUUUUGGGGGGHHHHHHHH!!!

[Guest guest]

In a message dated 12/17/03 6:18:13 PM Eastern Standard Time,

monica-jb@... writes:

<< I feel like you all

understand the problems with doctors so much. >>

Oh, more than you'll ever know.....it is especially heart breaking when it is

your child that is ignored and treated like a head case. I had to take my

daughter Ginny in one time for a severe headache, which she could not use her

left leg, and had severe dizziness. The doctor came in a told me it was

nothing, and it could not be a migraine headache. Boy, she didn't know who she

was

talking to.......oh, don't even get me started. So sorry this is happening to

your daughter. Hang in there.

Hugs,

Sue

[Guest guest]

UUUUUUGGGGGGHHHHHHHH!!!

All I can say is " shock a doc " , a term another EDSer came up with for stupid

docs!!!

Go wave the Patient's Bill of Rights in his face!!!

I know what you mean about the Munchhausen's by Proxy bit... I'm always

afraid that MD's will think that of me with 's problems. Luckily for

me her major injuries have always happened away from home - usually at

school or other activities.

Good luck with getting relief! Try a warm compress on her forehead

and on the back of her neck to relieve the muscle tension that has probably

built up.

When my had such bad migraines, which kept her home for 2 weeks at a

time, I finally took her to the ER and they gave her a combination of

Tordol, Compazine, and Benedryl. It knocked her out for 18 hours straight

but it also broke the migraine cycle. Call the ER closet to you and see

what they have to offer. I'd also call your primary MD and tell him what

happened!

I hate the urgent care docs in our clinic.... they treat us very poorly and

don't understand our EDS complications.

Bonnie

[Guest guest]

> ok, the stress is really getting to me now.

> woke up with her headache still lingering, so I let her

take my massage therapy this morning. After we left the building,

her headache was so bad. It's really sunny here, and the light was

killing her head. So, I'm assuming it's a migraine - right?

Very likely that it was/is a migraine because light sensitivity is a

common factor.

> The dr there said he'd give her a shot of torodol, which she had

> recently for her back, and she said " no, I don't want that shot " .

> Her right, correct?

It is absolutely her right.

> Then, the dr took me outside and gave me a lecture about " enabling

> her pain " . " I'm letting her spiral down into chronic pain " (she

> already has chronic pain!) " I should ignore a lot of her

> complaining - it just makes it worse " Then he said she has a mild

> headache, nothing to worry about. He said maybe because it's so

> sunny today, and it hasn't been in a while, that she's more

> sensitive to it! I swear he said those very words!

Sounds to me like he doesn't have a clue on either (a) chronic pain

or ( migraine headaches.

> was so upset, she stood up, and said we're leaving this

place and never coming back. So we left without a word. She got

home and wrote a scathing letter to the clinic.

Good for her.

> One other thing - He told me it's a mild headache, then he wanted

to give her a shot of torodol. had torodal in the hospital

> with her morphine after her lung surgery. It is not a drug for

> a " mild " anything. The truth about it is that you can only have

it 5 times in a month, it's so strong and can damage the liver. So,

> why would he give her that if it's a " mild " headache?

You already know the answer to that question - it's because he's an

incompetent idiot.

> Sorry for going on so. You guys are the only ones I can " Vent "

to. I feel like you all understand the problems with doctors so

much.

Don't apologize. The venting is necessary and therapeutic. If you

don't have the ability to or someplace where you can safely vent

when necessary, it is just going to eat you up internally. I think

we have all " been there, done that " ourselves at times in the past.

Feel free to unload at any time.

> I know I'm a good mom. I know I'm doing the right things for my

> kids. So why are they treating me like this?

See my answer to your question up above.

[Guest guest]

(The following is MY thought's Ideas and slant on things PLEASE no

one think I am saying anything against anything, I went through being

NOT believed etc from age 12 or earlier until about age 30 (well

actually after my Rheumy appointment yestday make that still to today

at age 32)

,

You are NOT alone in this at all, I am a migraine sufferer and this

sounds VERY like some of my migraines (most headeaches go away after

a sleep and you rarely wake up (or at least i rarely do) with just a

headache (unless you slept wrong).

YOU ARE A WONDERFUL MOTHER, who is having such a ROUCH time of it

lately and this incompetant, idiot, moron, loser doctor " can go take

a LONG walk off a short pier " .

I have been through exactly what you are going through (from 's

point of view though) and my Mum went through it from your point of

view (you should read some of MY records and the things written in

them).

IT is DEFINATELY her right to refuse the shot (and who would want

that person to jab you with ANYTHING after being treated like that (I

would be scared that he was so hopeless that he might stuff that up

too, or at least make it as painful as possible), you should

congratulate her for taking such an active role in her OWN care (this

is a huge responsibility and one she is handling VERY well and very

maturly (sp?)(I forget how old she is). Good on her for standing up

for herself (and make sure you post her letter to that clinic as they

SHOULD know, I mean you daughter is the patient and the letter from

her about her treatment (no matter HOW scathing should be sent to

those in charge).

CUT ** > Then, the dr took me outside and gave me a lecture about

" enabling her pain " . " I'm letting her spiral down into chronic

pain " (she already has chronic pain!) " I should ignore a lot of her

> complaining - it just makes it worse " Then he said she has a mild

> headache, nothing to worry about. He said maybe because it's so

> sunny today, and it hasn't been in a while, that she's more

> sensitive to it! I swear he said those very words!

> And, then the talk about narcotics - addiction, dangers of it all

> (like I don't already know that!). I told him I didn't want her to

> have narcotics.**

As to this, BOY this makes me MAD ~:-/.

If this was me and I was spoken to like this by a doctor who thinks

he is GOD or something and who thinks he knows everything after

seeing someone for all of 1-4 minutes (AHHHHHH). You are NOT enabling

her pain (you are sympathising with it (You know what it is like),

this doctor (although i don't know if he should even hold that title)

has NO empathy and VERY POOR training if he thinks this, he obviously

knows NOTHING about migraines, headaches, pain, chronic pain etc.

YES your daughter already HAS chronic pain (worse than anything that

moron could think of or deal with himself), and you sympathising and

getting her HELP is NOT going to make this worse. If you were to take

his advise and ignore a lot of it (most likely all that would do

would be to make loose confidence in you and in herself, as

well as make her keep most of her pain and symptoms to herself which

could be dangerous to her physical and mental health (WE KNOW her

pain is real, it is NOT in her head (no matter how many moron doctrs

think it is (Like many of mine from age 12) she has a disorder that

causes pain beyond what anyone but those of us with EDS can

understand (Or so I have come to realise). If my Mum had of ignored

my pain etc then I think I would have been a much meaner, shy, person

who thought in the back of my mind that I was crazy or a lier etc and

this I think would have destroyed me (I mean we are emotioanlly

fragile at that age as it is WITHOUT being different and having an

incurable condition that causes so much pain and limits our lives in

so many ways.

Oh man and you got the Narcotics talk too (you did get the full

lecture didn't you), You already know this but if these medications

atre the ONLY thing that give you or your child a somewhat quality of

life back then I say go for it, the likely hood of addiction is VERY

low as even with STRONG and HIGH doses of Narcotics it rarely if ever

removes our pain , usually it just brings it down to a level where we

can think and finction on some level. And what about the dangers of

leaving a child in THAT much pain, that they are sick, neauseas,

crying, vomiting and cn't think or function etc and the danger to

there emotions and minds as well from being in this much pain, not to

mention there development and social well being.

, you contiue to look after your lovely, bright, well adjusted,

corageous daughter, just the way you are, and next time a doctor

comes out with that Cr@p to you,then if it was ME, I would wait for

the moron to finish and then lecture him on his oath, the bill of

rights, and what EDS and chronic pain can do to a person and that you

being a loving caring parent will not make your daughter some kind of

drug seeking, pain monster. Tht what you and your daughter live

through EVERY second of every hour of every day of your lives is

beyond anything he could think of and that he should go bakc to

school and work on his empathy, bed side manner and on his knowledge

of pain and on chronic pain and even EDS. (I am sure someone can give

you a better way to say what you are really thinking (I would go as

far as carrying somehting with you, (maybe from her pain doc if she

has a GREAT one) that states and explains her pain problems and the

side effects etc. or even something you have written that explains

what living with EDS is like.

And yes most likely if you ignored her problems like they sugges they

they would say you are neglecting her <AHHH>.

> Am I doing something wrong? Should I just be brushing off what she

> complains of? She has never been one to complain, and has always

> been pretty tough. She's really hurting now, and I believe her.

> Besides, she certainly can't " fake " her cold, purple leg!

NO, you know you are not doing anything wrong and you know that her

pain and symptoms are real, scary, and very painful, you keep on the

way you have been , you are truly helping , and you are a

truly wonderful Mum ( knows this) and PELASE do NOT pay

attention to what these looser doctors say or think (if you have a

good primary doc, specialist, pain doc etc for her, then listen to

them, but most importantly LISTEN TO YOURSELF and listen to YOUR

daughter. You know when your daughter is REALLY in pain and you see

what she lives with EVERYDAY, you most likely knows when she is

putting things on too (like when kids have a phantom tummy aches

until the school bus leaves etc, and I mean those pretend ones NOT

real ones), you also know her personality, and you know what she is

like and what she would or would not do (most kids with chronic apin

and ilness do not " Fake " illness as they know how yucky real illness

is, they are also usually a LOT more mature than there age.

And as you said, she cannot FAKE her cold, purple leg.

Continue to vent here (boy if everyone here wasn't here to listen to

me vent then I think I owuld explode (mentally, emotionally and

physically <LOL> and that would be a mess <he he>)I mean we are the

ones who can and do understand what it is like to wage a war on the

medical profession to get treatment for ourselves (and our families)

and also to get treated decently, like human beings with understand

and compassion (I wonder if most of these doc's have

compassion-ectomies at graduation or even at enrollment into medical

school).

You continue being the wonderful, caring mother that you are, and you

continue to fight for you and amanda's medical treatement.

Good Luck (and sorry for the length and nasty connotation to this

post, but I have been dealing with this since before I was 12 (I also

had a WONDERFUL mother) and still am at 32 years old and it makes me

SO MAD...It makes me even madder when I hear about another child or

person going through what I did....

Maybe we all need to wgae a war on the medical profession (I can see

it now the EDS army with full brace exoskeletons to keep our joints

together, infiltrating doctors offices and ER's and holding doctors

and other medical persons hostage and forcefully teaching them about

EDS, and about how to deal with patients like people who have brains

of there own and with compassion and understanding <LOL> :-) <he he

he >)

Sharon (Shazinoz)

> ok, the stress is really getting to me now.

> woke up with her headache still lingering, so I let her take

> my massage therapy this morning.

> After we left the building, her headache was so bad. It's really

> sunny here, and the light was killing her head.

> So, I'm assuming it's a migraine - right?

>

> Well, we went home and she just couldn't stand it, so I took her to

> the urgent care.

> The dr there said he'd give her a shot of torodol, which she had

> recently for her back, and she said " no, I don't want that shot " .

> Her right, correct?

>

> Then, the dr took me outside and gave me a lecture about " enabling

> her pain " . " I'm letting her spiral down into chronic pain " (she

> already has chronic pain!) " I should ignore a lot of her

> complaining - it just makes it worse " Then he said she has a mild

> headache, nothing to worry about. He said maybe because it's so

> sunny today, and it hasn't been in a while, that she's more

> sensitive to it! I swear he said those very words!

> And, then the talk about narcotics - addiction, dangers of it all

> (like I don't already know that!). I told him I didn't want her to

> have narcotics. She has vicodin at home that I could have given

> her, but I know that doesn't help headaches. I was thinking they

> would try something like imitrex.

>

> This is the 2nd dr to give me this lecture.

>

> Now, correct me if I'm wrong, but what would they think if I

ignored

> her problems? Would they get me for neglect?

>

> was so upset, she stood up, and said we're leaving this

place

> and never coming back. So we left without a word.

> She got home and wrote a scathing letter to the clinic.

>

> So, now she's got this migraine, which I gave her 80mg of

ibuprophen

> for, and she's trying to sleep.

>

> Am I doing something wrong? Should I just be brushing off what she

> complains of? She has never been one to complain, and has always

> been pretty tough. She's really hurting now, and I believe her.

> Besides, she certainly can't " fake " her cold, purple leg!

>

> This is all so maddening, so frustrating, that I'm almost at the

> point of blowing my top at the next person who questions my

> parenting skills. How dare he! Again, it's a dr who saw her for 5

> minutes, then starts assuming.

> I do't even talk during his exam, I let do it all.

>

> One other thing - He told me it's a mild headache, then he wanted

to

> give her a shot of torodol. had torodal in the hospital

> with her morphine after her lung surgery. It is not a drug for

> a " mild " anything. The truth about it is that you can only have it

> 5 times in a month, it's so strong and can damage the liver. So,

> why would he give her that if it's a " mild " headache?

>

> I'm never going to that urgent care again. They are the ones who,

a

> few months ago, told me my eye was fine when I went in for a

> terrible pain in it, and later that day I was at the eye dr with an

> ulcer on my cornea! (My gp sent me there right away) The eye dr

> said I could have gone blind from it! He also said I had a scar

> from a previous one. That must have been the time I went to urgent

> care with terible eye pain, and they said I had a scratch on my

lens.

> A bunch of quacks, If you ask me!!!!!!!!!!!!!

>

>

> Sorry for going on so.

> You guys are the only ones I can " Vent " to. I feel like you all

> understand the problems with doctors so much.

> I know I'm a good mom. I know I'm doing the right things for my

> kids. So why are they treating me like this? Do they think I have

> munchausens by proxy or something?