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MannionUSMC

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Reply with quote  #1 

Does anyone live in CO with CVS that is willing to describe their experience with the ERs out there.  I am looking for a place where I will not be ostracized for having a condition that an entire care team agrees to the treatment plan for in the ER.  Currently in NJ every few months something happens where Security takes it upon themselves to do something that can seriously hurt me and continues to get away with it because of the institution they work for.  So instead of finding another doctor only to have him fire me again after the next set of hospital lies out here I was wondering if CO was more sensitive to our needs. 

I realize I can get doctors from the doctor list.  Is there anyone who lives by an ER who understands our condition and does not treat us poorly.  My medications I use to break attack are what got them treating me that way in the first place but it's like now that they know they are wrong they can not admit it to themselves and treat me like I always should have been treated.  It had to be my fault they treated me that way...

Tired

Just keep swimming

Mannion

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wynnak

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Reply with quote  #2 
Mannion, I’m sorry this happens. If anything, CO is going to be the same or possibly worse. Since it was The first state to legalize , recognition of CHS went up 900% in the first year. I’m hoping that the Adult Guidelines will help that..
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Blynda
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MannionUSMC

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Reply with quote  #3 

Wynnak,

Yeah my CVS diagnosis is solid it's just getting narcotics to break an episode even though I have two different specialist who wrote the attending physician saying it will break my attack right away.  Just a struggle.  I can't imagine anything worst then here, they literally have locked me in a room and went to town on me, along with other horrors.  It's a freak show.  Like if I have a GP GI Neuro and my docs come up with a care plan that leads to call the GP for admission (normal if these meds dont work, but treat fast and with these meds...). 

Nicest ER was in Wisconsin really.  I had a wait but they were so nice and apologized and when I got back, doctor.  Wanted to try their own thing first, tried it, didn't work, my docs thing with an apology their thing didn't work (what? If it did I would no longer have these narcotic ER problems.  Needing a Narcotic to break my attack is the bane of my existence).  Almost missed my flight due to snow, both the Crowne plaza (awesome people) and the hospital said dont worry they would figure it out if I needed them.  Got sick in Crowne plaza and tried to walk out to the ambulance and the crew MADE me stay in my seat while they got the stretcher (as a former EMT that is cool, like lazy people who see someone trying to walk just go with it at the expense of the patient health), I was so used to EMS around here yelling and assaulting me for not doing enough for them (I finally had to get a script written saying "bring the stretcher",  My mito are shut down I met you outside so you didn't have to deal with the steps, I already AM working with you, can I shut down now? 

I also know more of a support system there then I do here and may be looking for a new place to live now that it is winter. :/ 

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ginny

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Reply with quote  #4 

Not a lot of knowledge here but I decided to take a look around the web.  There are various groups and foundations discussing treating and managing pain and pain patients articles on dealing with non-helpful and often demeaning medical providers.

Maybe by reading a bit on some of these other support pages, there will be mention of empathetic ERs and Medical Support Staff.  

Have you considered a pain pump?  Some of those I know who have RSD (now diagnosed under another name) wear pain pumps.  


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