It's amazing how much effect

[Noor]

a person's email response can have on you esp. if it is one's specialist.
Also amazing how it can turn around in the next round.
None of us want to email you, we would like our general doctors to deal with it, but sometimes we have no choice. Sometimes these doctors ask us to do it.

We are walking a tightrope here, staying pleasant, alert and alive even while doing poorly plus appeasing the non specialist doctors who are willing to treat us even though they aren't comfortable with or experienced in our disorder.

 

[neci]

i should probably reply to an e-mail, but it's over a year old.

i am not always a good friend.

 

[Noor]

i should probably reply to an e-mail, but it's over a year old.

i am not always a good friend.

You are there when I need you, what more is a friend?

 

[neci]

You are there when I need you, what more is a friend?

:hugs:

i try.

you are good peoples, noor.

 

[Noor]

This was not directed at anyone here.
Unless my doctor is here and if then, well ... you know who you are.

One of us died 12 days ago, frustrated and not able to get treatment in a timely manner. When things are bad with us, it's very intense, the pain is incredible, the lack of control over our lives and activitives is very hard to deal with.

One day you are fine, doing everything you want and need to, following your protocol to the letter, taking your meds, and then without warning, bam! everything changes and you in serious trouble and have very little control over anything.

It's hard enough to deal without dealing with medical politics and having to fight for treatment

 

[Noor]

:hugs:

i try.

you are good peoples, noor.

Thanks, you too, neci

 

[neci]

It's hard enough to deal without dealing with medical politics and having to fight for treatment

there is a point at which one loses the ability to fight for treatment, accepting what is as status.

 

[Noor]

there is a point at which one loses the ability to fight for treatment, accepting what is as status.

True, but I am not planning on dying...

 

[neci]

True, but I am not planning on dying...

oh no! not that. it takes a lot to fight two fights. on days that are absolute crap, just to fight the day is enough for anyone.

 

[Bert Notorius]

i heard an elp lyric
the other day
and thought of
byron.

is that weird?

i was
byroninexile
btw.

 

[Noor]

i heard an elp lyric
the other day
and thought of
byron.

is that weird?

i was
byroninexile
btw.

That is pretty weird.
It's also weird that elp is now only p, I don't think Bryon would have dealt with that well at all, esp. E's suicide.

Yes, we knew that

 

[Noor]

The death toll is up to 6 now, while the infighting within the medical community intensifies.
Definitions, call it what you will, quibble quietly amongst yourselves, just treat your patients!

 

[MGurkus]

i heard an elp lyric
the other day
and thought of
byron.

is that weird?

i was
byroninexile
btw.

We know, ann.

 

[Que]

The death toll is up to 6 now, while the infighting within the medical community intensifies.
Definitions, call it what you will, quibble quietly amongst yourselves, just treat your patients!

I have to think that a vested Community like that closely knit sharing experiences treatments what work what didn't has got to have an impact on the medical community. In the past they would have simply died in silence and no one would have known about the similarities and differences of those particular cases.

I hope it gets pieced together soon.

 

[RobDownSouth]

This was not directed at anyone here.
Unless my doctor is here and if then, well ... you know who you are.

One of us died 12 days ago, frustrated and not able to get treatment in a timely manner. When things are bad with us, it's very intense, the pain is incredible, the lack of control over our lives and activitives is very hard to deal with.

One day you are fine, doing everything you want and need to, following your protocol to the letter, taking your meds, and then without warning, bam! everything changes and you in serious trouble and have very little control over anything.

It's hard enough to deal without dealing with medical politics and having to fight for treatment

Do you suffer from disassociative identity disorder?