A day from hell

[Guest guest]

I'm sorry I haven't posted much lately, please forgive me but

unfortunately my shoulder has restricted me somewaht and then I had

another of those days from hell yesterday. I should probably give you

some back ground to explain things first though and warn you that

this is going to be very long and very angry in nature too.

As you may know I've had problems with my GP and knee OS in the past,

in that before I was fully diagnosed with EDS, they conspired behind

my back to dub me a hypochondriac and claimed my over protective

parents were in fact encouraging my " illness behaviour " . It took a

chance look at a letter during a PT session for me to find out about

this and finally have an answer to why so many other people seemed to

be prejudiced against me and unwilling to " believe " me or investigate

my situation properly. A lot of hard, painful and disturbing meetings

and conversations ensued until I was finally given a half hearted

apology form my GP (mainly because he thought I'd sue him otherwise)

and a pathetic few sentence letter placed in my notes stated that

he " may have misjudged me and wouldn't want any one to prejudge me

because of that " . I guess I should have been impressed as I never

even got that much from my knee OS....

Anyway, that letter it seems is all my GP feels was necessary after

15 years of mistreating, misjudging and insulting my health, my

character and my integrity though. He has no comprehension that

rectifying this has to go a whole lot deeper. This " incident " was a

year ago now and although things have improved it's still not right

in that there is still an air of disbelief from people and a definite

case of him not doing all that is expected of him I'm afraid. I

recently asked to see the last years worth of notes to check to see

if this " functional overly and hypochondria " line was truly gone and

to my dismay, although I found no evidence of that, there is still a

definite undercurrent of doubt creeping into my notes from many

angles. With statements such a " claims, says and possible " used

instead of positive reports of actual events - there's always this

hint of suspicion somehow. It also confirmed my concerns that he is

again failing to treat me properly as he has decided, without even

consulting me, that a medication both my geneticist and pain

management doc suggest might be helpful, actually wouldn't be. Hence

I have been denied something that could have been beneficial. What

right has he playing God over my consultants opinions like that? He

has constantly failed to follow up on my medical complaints too,

simply doing the normal tests and if they don't show anything the

situation is over. It doesn't matter that I'm still having symptoms

or problems. He's never prepared to go that extra mile and keep

looking for what is actually wrong. For instance, for over 3 years

now I have been having scary episodes of racing heart beats and

literally stopping breathing completely - but because my heart

monitor was normal he's done nothing else and just reckons I'm

hyperventilating. That I find grossly negligent as it's the exact

opposite of what I'm describing and it's also very insulting to me

and my Mum who is a trained nurse - for gods sake we know the

difference between hyperventilation and a chest pain/dyspnoea attack!

Grrr....

The straw that broke the camels back though came about from me asking

to see my geneticist again. I have been on contact with him via

letters since my initial consultation back in October 2002, and this

man has repeatedly stated that any time I feel the need to see him

again I am very welcome to. As such because I was concerned to

whether my rotational deformities are linked genetically with my EDS

or a separate genetic problem, I asked my GP to refer me to this

geneticist so that we could discuss the situation. He could not grasp

why I needed to see him though, simply asking what difference would

it make knowing? I couldn't believe that, and for all I explained to

him how finding out whether this problem is linked or separate could

have major implications, such as whether it's going to progress,

spread or may even be more treatable if a separate entity - he still

could not understand why it mattered! So instead of contacting my

geneticist to see if it would be wise for me to see him as I had

asked him to do, he simply wrote to my largely useless knee OS who

was part of the initial " hypochondria " problem. Now she has all but

washed her hands of me and doesn't even want to see me again as she

can't/wont do anything for me, so why on earth did he feel the need

to ask here whether I should see my geneticist or not?

I hit the roof when instead of getting a referral to my geneticist

as I has requested I got a rather patronising letter from this knee

OS, completely missing the point of what I'm trying to find and

merely stating my " minor " orthopaedic problems will possibly start to

worsen, but there's nothing anyone can do so just get on with it and

do more physiotherapy! I was just furious by this point, so yesterday

morning I confronted my GP about this and my disgust with the whole

situation as I just don't feel I'm getting the support or treatment I

deserve here. This is where the nightmare really begins though, as

far from having the guts to admit his failing, apologise and assure

me things will change he arrogantly told me he feels he has gone

above and beyond the call of duty and it's only my perception of his

failure of me that is at issue!! Can you believe that? He reckons

that my expectations of him and the medical profession are far too

high - oh well excuse me put I thought expecting the medical

profession to respect you and do there best to diagnose and treat you

was the whole point of why they are there? He can't understand that

it's in his hands to make me be able to trust him, and can't see that

he has to prove to me that I can trust him again now. He simply feels

it's down to my judgement and if I can't trust him I should find

another doctor!! I'm seriously considering now as I honestly don't

have any trust left for this man and would find it hard to put my

health in the hands a someone I hate this much now.

My parents hit the roof over this, and promptly both went down to

talk with him too - would you believe that he told them I had upset

him and stressed him out by " verbally attacking " him? For starters I

did nothing of the sort, I just calmly and politely stated the truth

and displeasure with his mistreatment of me. I find it disgraceful

that after 15 years of neglecting me, insulting me and accused me of

lying, he claims to be upset by my confronting him about it!! At this

point my Mum really tore into him and he did eventually admit that he

may have made mistakes and failed me. Wow, big confession huh! He

wants to talk with me again about the situation and has stated he is

happy to remain my doctor. I am going to talk with him, but I'm

afraid he is going to have to do a hell of a lot to convince me he's

worth my time and forgiveness. I'm definitely swaying more towards

moving to a new practice, but unfortunately that is going to be

difficult as not many surgeries are accepting new patients so it

will also involve travelling a lot further from my home which isn't

easy for me to do. I'm very confused right now, but can't help

feeling that starting form scratch and enduring the struggle to get

to a new practice would be better than staying here with someone I

don't ever think I'll trust again.

Oh why is life never easy huh? I really don't need this kind of thing

right now. I'm so tired of having to fight doctors and the medical

profession as well as this darned condition...I just don't have the

energy to do both. I really don't know what is going to happen here,

I'll wait a few days then arrange to talk with this GP about the

situation and see what he says. I will probably base any further

decision on what happens during that meeting. All I want is to be

able to see my primary care doctor and know instantly that I am being

respected and will receive the best possible care and treatment from

them - I honestly don't feel that is too high an expectation to have

from a doctor do you? It's a basic duty of care if you ask me.

I'm sorry this is long and angry, I just have to get it off my chest

though as I have so much hatred and bitterness inside me at the

moment - not emotions I'm in the habit of accommodating. But this

really has just left me reeling and unable to forgive and forget - I

know everyone makes mistakes, but it's different when it's someone's

life that is at stake. I'm only grateful that through luck alone, I

didn't become another of his buried mistakes.

Thank you for listening and sticking with this if you reached the

end! Thank you for being there for me and being one thing I can

always depend on, it seems there is so little that I truly can these

days. Thinking of you all and hoping you're having much better days.

Love and hugs.....Jo

xxx

P.S. I don't suppose anyone in the North East, UK knows how I could

possibly find an EDS friendly GP locally do they?