Why can't I advocate for myself?

February 22, 2012

I have a lot of difficulty advocating for myself when I'm a patient.

As a nurse, I have very little trouble advocating for patients,

though. Pretty sure this has to do with being a KO and some other

issues I've had with docs in the past...

Over the last year, my doctor has decided I have fibromyalgia. I'm

not entirely sold on that diagnosis. Most my my symptoms could cross

over between fibro or neurological disorders as they seem to be neuro

in origin. Twitching, skin pain, numbness & tingling. Those are the

big issues. I have very little joint pain or muscle pain. But I do

have a lot of fatigue.

Today, I called his office because part of my left knee is completely

numb. No pain, nothing. Just numb & feels very strange when I walk,

like my knee is going to buckle. My leg also feels very heavy. I

have had to put extra thought into walking because I have sort of

shuffled with that leg and almost fell last night. When I called, they

said they would put a message back to him and/or nurse. The nurse

called me, said he was booked but I could see the nurse practitioner.

I said no problem. But now I feel like they think I'm a giant

hypochondriac! I didn't ask for an appointment today, their staff are

the ones who thought it was necessary and I can see why when a PT is

complaining about numbness. But good grief!!!

I was basically told if it keeps up for 3 - 4 more weeks to call back,

that it's probably part of the fibro and " normal " . Uh, no, not being

able to feel your damn knee is far from normal, and fibro (or other

conditions) are not normal either. They also said I need to come back

in a week to have my blood pressure rechecked.

YES MY BP IS ALWAYS HIGH WHEN I'M IN THE OFFICE BECAUSE I'VE HAD TO

CONTINUOUSLY ARGUE WITH DOCTORS FOR THE PAST 20 YEARS!!!! So I get

" white coat " syndrome, my bp and pulse go up because I definitely get

anxious. I tried to tell her this but she insisted I come back.

Gee, does this make any level of sense? Sure it does! After years of

nada never believing me when I was really sick, and YEARS of arguing

with my first GYN about my pain - and being told " It's all part of

being a woman; it's all in your head; take some motrin, you'll be

fine " for 4 years before finally seeking another physician and being

diagnosed with endometriosis which lead to hysterectomy last

january...

Yes, I get anxious when I'm the patient. Yes, it makes sense. Do

they seem to understand that, NO. Do they listen? Hell no!

Well, I called another clinic today & am going next week for a 2nd

opinion. I am seeing another nurse practitioner and hoping she will

send me to a neurologist because I'm sick of this crap.

I moved to this state (State " B " ) nearly 3 years ago after living in

another state (State " A " ) all of my life. When in State A, my doc

there sent me for an MRI because he suspected MS (Multiple Sclerosis).

2 years ago, now in State B, my new doc also sent me for another MRI

because he also suspected MS. So I have had 2 BRAIN MRIs... not MS

protocol MRIs which would include brain and spinal cord, be smaller

(3mm) slices and no skipping areas. So if 2 damned doctors have

suspected MS, why the hell aren't they doing an MRI to MS protocol?!!

That's just irritating the hell out of me.

So yeah, I want to see a neurologist. Sure, fibro can mimic MS and

vice versa, but I'm not entirely sold on the fibro diagnosis. I feel

like they flaked out on the MRI both times and that MS still needs to

be ruled out.

I'm just utterly frustrated. I hate the anxiety that comes with

having to go to the doctor's office. I'm tired of feeling like I'm

talking to a damned brick wall and not being heard. I wish I could

just be confident when I'm in the patient role. But I have such

difficulty with it. It sucks!

Thanks for listening, needed to vent.

Mia

February 22, 2012

I can sure relate Mia - I'm sorry you are going through all this. When I'm

advocating for someone else I can be fearless and very assertive, but there's

something about being a patient that is just so disempowering. And it's like

the more anxious and fearful I am (which I would be if going in for something

scary) the more likely they are to patronize and discount. Then that triggers

a whole cycle of crap. I'm really glad you are getting a second opinion Mia.

You have the medical knowledge to see the oversights they are making and know

you deserve better. I hope you are knee gets back to normal soon!

eliza

>

> I have a lot of difficulty advocating for myself when I'm a patient.

> As a nurse, I have very little trouble advocating for patients,

> though. Pretty sure this has to do with being a KO and some other

> issues I've had with docs in the past...

>

> Over the last year, my doctor has decided I have fibromyalgia. I'm

> not entirely sold on that diagnosis. Most my my symptoms could cross

> over between fibro or neurological disorders as they seem to be neuro

> in origin. Twitching, skin pain, numbness & tingling. Those are the

> big issues. I have very little joint pain or muscle pain. But I do

> have a lot of fatigue.

>

> Today, I called his office because part of my left knee is completely

> numb. No pain, nothing. Just numb & feels very strange when I walk,

> like my knee is going to buckle. My leg also feels very heavy. I

> have had to put extra thought into walking because I have sort of

> shuffled with that leg and almost fell last night. When I called, they

> said they would put a message back to him and/or nurse. The nurse

> called me, said he was booked but I could see the nurse practitioner.

> I said no problem. But now I feel like they think I'm a giant

> hypochondriac! I didn't ask for an appointment today, their staff are

> the ones who thought it was necessary and I can see why when a PT is

> complaining about numbness. But good grief!!!

>

> I was basically told if it keeps up for 3 - 4 more weeks to call back,

> that it's probably part of the fibro and " normal " . Uh, no, not being

> able to feel your damn knee is far from normal, and fibro (or other

> conditions) are not normal either. They also said I need to come back

> in a week to have my blood pressure rechecked.

>

> YES MY BP IS ALWAYS HIGH WHEN I'M IN THE OFFICE BECAUSE I'VE HAD TO

> CONTINUOUSLY ARGUE WITH DOCTORS FOR THE PAST 20 YEARS!!!! So I get

> " white coat " syndrome, my bp and pulse go up because I definitely get

> anxious. I tried to tell her this but she insisted I come back.

> Gee, does this make any level of sense? Sure it does! After years of

> nada never believing me when I was really sick, and YEARS of arguing

> with my first GYN about my pain - and being told " It's all part of

> being a woman; it's all in your head; take some motrin, you'll be

> fine " for 4 years before finally seeking another physician and being

> diagnosed with endometriosis which lead to hysterectomy last

> january...

>

> Yes, I get anxious when I'm the patient. Yes, it makes sense. Do

> they seem to understand that, NO. Do they listen? Hell no!

>

> Well, I called another clinic today & am going next week for a 2nd

> opinion. I am seeing another nurse practitioner and hoping she will

> send me to a neurologist because I'm sick of this crap.

>

> I moved to this state (State " B " ) nearly 3 years ago after living in

> another state (State " A " ) all of my life. When in State A, my doc

> there sent me for an MRI because he suspected MS (Multiple Sclerosis).

> 2 years ago, now in State B, my new doc also sent me for another MRI

> because he also suspected MS. So I have had 2 BRAIN MRIs... not MS

> protocol MRIs which would include brain and spinal cord, be smaller

> (3mm) slices and no skipping areas. So if 2 damned doctors have

> suspected MS, why the hell aren't they doing an MRI to MS protocol?!!

> That's just irritating the hell out of me.

>

> So yeah, I want to see a neurologist. Sure, fibro can mimic MS and

> vice versa, but I'm not entirely sold on the fibro diagnosis. I feel

> like they flaked out on the MRI both times and that MS still needs to

> be ruled out.

>

> I'm just utterly frustrated. I hate the anxiety that comes with

> having to go to the doctor's office. I'm tired of feeling like I'm

> talking to a damned brick wall and not being heard. I wish I could

> just be confident when I'm in the patient role. But I have such

> difficulty with it. It sucks!

>

> Thanks for listening, needed to vent.

>

> Mia

>

February 22, 2012

Thanks Eliza. Sorry you too experience these issues. It sucks. I

just wish someone would stinking hear me. But, I think having the

medical knowledge actually hurts me. I'm " just " a nurse, and not even

an RN, I'm " just " an LPN. So obviously I don't know squat. (Yes, I'm

being sarcastic)

No, I don't have the years of education behind me that RNs or MDs

have, but I'm also very capable of learning and have a pretty good

track record when it comes to listening to my gut about doctors &

issues with them, be it for myself or for patients when I was a

student (Still waiting to start my job, government moves SLOW!).

Anyway, thanks for listening & for letting me know I'm not alone.

Mia

On Wed, Feb 22, 2012 at 6:40 PM, eliza92@...

wrote:

>

> I can sure relate Mia - I'm sorry you are going through all this. When I'm

> advocating for someone else I can be fearless and very assertive, but

> there's something about being a patient that is just so disempowering. And

> it's like the more anxious and fearful I am (which I would be if going in

> for something scary) the more likely they are to patronize and discount.

> Then that triggers a whole cycle of crap. I'm really glad you are getting a

> second opinion Mia. You have the medical knowledge to see the oversights

> they are making and know you deserve better. I hope you are knee gets back

> to normal soon!

>

> eliza

>

> >

> > I have a lot of difficulty advocating for myself when I'm a patient.

> > As a nurse, I have very little trouble advocating for patients,

> > though. Pretty sure this has to do with being a KO and some other

> > issues I've had with docs in the past...

> >

> > Over the last year, my doctor has decided I have fibromyalgia. I'm

> > not entirely sold on that diagnosis. Most my my symptoms could cross

> > over between fibro or neurological disorders as they seem to be neuro

> > in origin. Twitching, skin pain, numbness & tingling. Those are the

> > big issues. I have very little joint pain or muscle pain. But I do

> > have a lot of fatigue.

> >

> > Today, I called his office because part of my left knee is completely

> > numb. No pain, nothing. Just numb & feels very strange when I walk,

> > like my knee is going to buckle. My leg also feels very heavy. I

> > have had to put extra thought into walking because I have sort of

> > shuffled with that leg and almost fell last night. When I called, they

> > said they would put a message back to him and/or nurse. The nurse

> > called me, said he was booked but I could see the nurse practitioner.

> > I said no problem. But now I feel like they think I'm a giant

> > hypochondriac! I didn't ask for an appointment today, their staff are

> > the ones who thought it was necessary and I can see why when a PT is

> > complaining about numbness. But good grief!!!

> >

> > I was basically told if it keeps up for 3 - 4 more weeks to call back,

> > that it's probably part of the fibro and " normal " . Uh, no, not being

> > able to feel your damn knee is far from normal, and fibro (or other

> > conditions) are not normal either. They also said I need to come back

> > in a week to have my blood pressure rechecked.

> >

> > YES MY BP IS ALWAYS HIGH WHEN I'M IN THE OFFICE BECAUSE I'VE HAD TO

> > CONTINUOUSLY ARGUE WITH DOCTORS FOR THE PAST 20 YEARS!!!! So I get

> > " white coat " syndrome, my bp and pulse go up because I definitely get

> > anxious. I tried to tell her this but she insisted I come back.

> > Gee, does this make any level of sense? Sure it does! After years of

> > nada never believing me when I was really sick, and YEARS of arguing

> > with my first GYN about my pain - and being told " It's all part of

> > being a woman; it's all in your head; take some motrin, you'll be

> > fine " for 4 years before finally seeking another physician and being

> > diagnosed with endometriosis which lead to hysterectomy last

> > january...

> >

> > Yes, I get anxious when I'm the patient. Yes, it makes sense. Do

> > they seem to understand that, NO. Do they listen? Hell no!

> >

> > Well, I called another clinic today & am going next week for a 2nd

> > opinion. I am seeing another nurse practitioner and hoping she will

> > send me to a neurologist because I'm sick of this crap.

> >

> > I moved to this state (State " B " ) nearly 3 years ago after living in

> > another state (State " A " ) all of my life. When in State A, my doc

> > there sent me for an MRI because he suspected MS (Multiple Sclerosis).

> > 2 years ago, now in State B, my new doc also sent me for another MRI

> > because he also suspected MS. So I have had 2 BRAIN MRIs... not MS

> > protocol MRIs which would include brain and spinal cord, be smaller

> > (3mm) slices and no skipping areas. So if 2 damned doctors have

> > suspected MS, why the hell aren't they doing an MRI to MS protocol?!!

> > That's just irritating the hell out of me.

> >

> > So yeah, I want to see a neurologist. Sure, fibro can mimic MS and

> > vice versa, but I'm not entirely sold on the fibro diagnosis. I feel

> > like they flaked out on the MRI both times and that MS still needs to

> > be ruled out.

> >

> > I'm just utterly frustrated. I hate the anxiety that comes with

> > having to go to the doctor's office. I'm tired of feeling like I'm

> > talking to a damned brick wall and not being heard. I wish I could

> > just be confident when I'm in the patient role. But I have such

> > difficulty with it. It sucks!

> >

> > Thanks for listening, needed to vent.

> >

> > Mia

> >

>

February 24, 2012

story of my life. Nada excused the symptoms and pretended they did not exist.

family calls me a " faker " . doctors tell me I imagine my symptoms. I am now after

suffering from the same thing my ENTIRE life getting treatment. I finally found

the right doctor. he made me feel comfortable, did not blow me off,and figured

things out. on the up side nada's neglect most likely saved me from unnecessary

surgery and other nasty things because the treatment has changed for my

condition for the better.

being guilty about being sick is so hard. emotional abuse is wrong to do that to

us. I am hopeful that the treatment I am undergoing now (while very

time-intensive) is going to be the real deal. I hoe you can find the same peace.

I hope the next doc. is the right one. and no those symptoms are not ok. you are

not a hypochondriac.

Meikjn