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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 lizzie

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Posted 24 March 2009 - 09:00 AM

Having read the last few postings, it has struck me how many of us are fobbed off and given the run arround by clinicians and receptionists. I think we need guidelines on how to be assertive posted on the website. Any suggestions?

Lizzie

#2 mando621

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Posted 24 March 2009 - 01:00 PM

Hi Lizzie,

I've been feeling like that for years, not only about health care, but my students as well.

I definitely am a product of the Good Girl Syndrome. Often because of the results I get when I try to be assertive, I end up being "good".

Recently, I finally made an appointment with a different family practitioner to see if I could get her as my primary care doctor. I told the receptionist that I was shopping for a new primary care doctor and got in. The doctor listened to me, even told me I wasn't nuts. She said that the body sometimes doesn't know that it is suppose to send out blood markers if there is something wrong, and that it takes looking at things from all angles to figure out what is going on. She is willing to be my primary care doctor and coordinate my appointment with the specialist I already have set up. She even listened when I asked if it might be possible that I have had Lymes at some point and ordered the blood work for it.

I'm trying to be positive and passively aggressive, if that can be used as the phrase to describe what I'm doing. I don't want to get negative and pushy. I find that that ends up blowing up in my face. So far it seems to be working.

It was so great, even the nurse that drew blood was terrific. I told her I was a difficult case for drawing blood and she got out a little packet that looked like an instant ice pack, I almost told her "no". It wasn't a cold pack, it was a "WARM" pack!!! :rolleyes: She was able to draw blood with almost no pain on my part!! Finally someone who understands. I tried to be patient while waiting to see the doctor, and it seems to be paying off so far.

I told her all my issues and we discussed what had been done so far. I told her I was trying to get the puzzle put together and that there hasn't been any actually diagnosis yet, but I feel that there is something going on. She checked me for fibromyalgia because I said that was the only thing I'd been diagnosed with so far. She didn't think I had it based on the fact that I wasn't bothered by any trigger points, I'm sleeping okay, just not enough because of my own fault (bad tv habit). She seems to be willing to keep an open mind and watch for things. She even read the reports from the specialists I've seen which is more than my current primary care doctor did.

Hang in there.

Mando.

#3 debonair susie

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Posted 26 March 2009 - 08:43 AM

I'm so happy to read that things are finally coming together for you, in this particular department, Mando.

As I'm sure both you and Lizzie have noticed, this is a topic of interest/concern for most of us here.

This next week, as a matter of fact, I will be drafting a letter to present to the administrator of a hospital.
That which I will address is in regard to an awful experience at the ER, recently.

I have chosen this method because I know it will get the attention it deserves and feel confident steps will be taken to remedy the problem.

Also, when a person feels with conviction, as I do about this, it's best to have a paper trail.
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#4 Jeannie McClelland

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Posted 01 April 2009 - 12:38 PM

Did you all know we have a section on Physician and Patient Relationships? (I'm still learning what all we have, thanks to Janey's expert guidance.)

There are a number of really good articles in the section, so be sure to scroll down the list. I'm hoping we'll be adding more as time goes on.

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Jeannie McClelland
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#5 Amanda Thorpe

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Posted 01 April 2009 - 11:05 PM

Hello All

Excellent question Lizzie, why are we whimps when it comes to confronting the medical community? They have the upper hand, we're relying on them, we need their expertise, we're ill and feel awful. The deck ain't stacked in our favour!

Making a written complaint after the fact can be both effective as well as cathartic, you don't get the instant satisfaction you get from a verbal confrontation but the satisfaction can be further reaching and longer lasting. When in hospital back in 2007 I experienced inept nursing care which resulted in drug errors. The inital verbal confrontation, although controlled and accurate, only made matters worse whereas the letter resulted in staff training, changes to who could administer procedures and what drugs would be stored on the ward. The result will now benefit others coming after me for the same treatment nevertheless even if it had only benefitted me it was still worthwhile.

Whether the matter is dealt with on the spot or thereafter can depend on 1) your emotional state at the time 2) is the problem behavioural or procedural 3) if dealt with there and then will it be 1 on 1 or is a cast of thousands looking on as this tends to make people more defensive.

For just plain rudness I think that can be dealt with straight away because the evaluation of rudeness is dependant on what behaviour you find acceptable. Simply asking someone if they are aware how rude they are or are the oblivious to it can work wonders, if not the problem may be more deep rooted and maybe needs addressing by a superior hence the letter approach. Mind you if you want to go back and go verbal, as weird as this sounds, practice what you are going to say first including dealing with any rebuttal.

Often people get away with bad behaviour because no one draws their attention to it so they get accustomed to it and it becomes the norm. Well that's my excuse anyway and I'm sticking to it! :lol:

Amanda
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#6 Jeannie McClelland

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Posted 02 April 2009 - 05:23 AM

I think a lot of people develop their bad habits because acting that way achieves their ends. Think about all the people you see creating a scene in a restaurant or a shop~ Free dinner if you'll shut up? No problem. If a receptionist can stun a patient into silence or going away without an appointment by rudeness, then that's one less thing to be dealt with.

I went to a scleroderma 'event' where one of the so-called leading specialists was to speak and answer questions. I'd been newly diagnosed with systemic sclerosis sine scleroderma, interstitial lung disease, and pulmonary fibrosis. I asked him if he would tell me a little about the sine form because I'd not been successful finding much information about it. He answered very brusquely, curtly, and in an angry tone "your prognosis is the same as diffuse" and then flatly refused to even look me in the eye, much less answer another question from me. I wondered afterwards if his behaviour wasn't caused by ignorance about this form of sclero and he just couldn't bring himself to say he didn't know much about it.

I've seldom been good at confrontation, but I've learned that if I maintain calmness and just wait someone out, it often works. Another little trick I've learned is to say something that acknowledges the difficulties the other person might be having and then ask how I can help them to help me. "I know Dr. So-and-So's schedule is incredibly tight and everyone is hounding you for an immediate appointment, but what can I do to help you fit me in? I think it is important that I see him ASAP because my heart is only beating once a minute now."

Sometimes it helps to escalate the issue past the first level - ask to speak to the practice manager, for instance. Again, as Amanda says, try to avoid putting people on the defensive. I stay calm (they can't see the huge acid rush into my stomach) and suggest that the practice manager can make exceptions to the policy and would be able to relieve the receptionist of responsibility.

I've got a friend who always takes a bag of candy or a pan of home-made brownies to her appointments. I tell her that's blatant bribery, and she says so what, she gets more courteous and friendly treatment because of it. I'd try that but I'd undoubtedly eat the brownies on the way~ :lol:
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#7 debonair susie

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Posted 02 April 2009 - 08:32 AM

Hi Everyone,

This is a sensitive subject and we all know it.

Jeannie, you mentioned that you aren't confrontational -- that's a GOOD thing, in MY opinion.

For me, I don't believe being confrontational would gain us any ground. I think this is a case of, "getting more bees with honey than with vinegar." :D

Jeannie, you gave a great example of the speaker and his answer to your question. I can't help but guess that he was on the spot and he reacted defensively because he really DIDN'T know the answer. I'm sure that if he could "re-ring that bell" he would respond much better.

Amanda, in response to your feeling "the medical community has the upper hand"... Sweetie, they really don't, but I'm afraid that's how many patients feel -- herein lies the problem.

It's been mentioned before in another thread that we, as patients today, really challenge our doctors, which can possibly be disconcerting to some of them, hence some of their reactions to our questions, rather than being proactive in furthering their research. However, I feel that the doctors/others in the medical community who are well-educated, make it their passion to learn as much as they possibly can.

By the way, the doctor who is open-minded can also learn from those of us who do research and learn from our Sclero.org Community, as there is a wealth of information right here, with the links, etc.
Special Hugs,

Susie Kraft
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