Re: Re: Do your dr's compare you to other patients?

[Guest guest]

Hi Ze,

I'm OK! I'm resting as much as possible, I have to put some stuff in order......My sister and I went to different stores

because she was looking for a table....then we went to eat, we had burgers, onions and fries mixed with gravy and

mozzarella cheese. It felt so good....you can't imagine.....

Then we went grocery shopping, I didn't buy a lot of stuff since I only eat about once or twice a day. All day I've been

feeling ill and I decided to check my temp and it's 37.8 degrees Celsius or 100 Fahrenheit

Since this past week, I've been feeling very tired and sleepy....Had some blood tests, my WBC are increased, my Hemoglobin

is 2 points below normal, even though I was given the Vitamin B12 injections. But then again, I lose blood without noticing it.

This Thursday, I'm seeing the surgeon for the first time since I've been out of the hospital...and I have very mixed feelings

about it.....

I'm just listening to music...

Irene

---- Original Message ----

To: Breathe-Support

Sent: Sat, 31 May 2008 4:40 am

Subject: Re: Do your dr's compare you to other patients?

Hi Irene,

I can't recall ever being directly compared to any other patient. I think the most my docs have said is 'that's not a usual reaction' rather than 'my other patients do this'. Mind you, I think I'm the only patient that my docs see with both Dermatomyositis and advanced pulmonary fibrosis (along with all the other associated problems) together, so maybe I'm incomparable!

I would NOT tolerate a doctor taking a bad mood out on me. That is completely unprofessional.

If I thought I was getting worse my consultants would expect me to contact them, although I would probably go through my GP first as it might be easily dealt with.

It sounds like you get a really raw deal. I believe we have the same kind of health care in our countries, so it's not as a result of a national health system, is there any formal complaints proceedure as I simply wouldn't tolerate some of the ways you've been treated.

Hope you're OK

Love Ze xx

>

> Hi All,

>

> I have a question....I know it will sound weird,?that I've been wanting to ask for a long time now...and I know

> everyone reacts to pain, meds etc...differently

>

> With all the different diseases that we are faced with whether it's PF, NSIP,?Lupus, Raynaud's Disease, RA etc....do your

> dr's compare you to other patients and tell you "Well other patients with the same disease as you don't experience what

> you are experiencing or don't have as much pain as you do......

>

> and your symptoms don't correlate with the amount or extent of your disease....

>

> 1- Does it?make you feel bad about it? and just wanting to crawl into a?hole?

>

> 2- Whether your dr's are having a bad day, on your appointment day, do they take the frustrations out on you, like it's your

> fault?

>

> 3- What about keeping your dr's updated on how you are doing? Does it frustrate them? or you just wait to see them and

> and update them, even though you know you are getting worse?

>

> Irene

> PF 03/07 Raynaud's Disease 09/07

> Crohn's Disease 03/95?

>

>

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