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Deidre

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Reply with quote  #31 
After finding this site I have more hope than ever.Ive felt such shame and have been suicidal at times. I'm so relieved to now have a name for this. I'm in a one horse town...Seen the same ER doctors over and over. A few years ago I had a DR. say" I canrt give you anything for pain and you know why". Well I didn't know why but I didn't say anything. I wasn't on drugs I couldntt understand but they they sent me home. my kids and friends know I will die from this because I refuse to go to ER. I will try to go to the hospital liason. and then that's it. I'm done, its so aweful whn I go...hours of I.Vs humiliation..just wont do it anymore. Thank you  for your support
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ginny

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Reply with quote  #32 
One small seed of hope can help you to get to the next step. Remember that you do have worth, you do matter. Shame in those who have caused you such pain. There is no excuse for cruelty.

The CVSA office will send a pamphlet to professionals and a patients pamphlet to you. Please email Debbie at cvsa@cvsaonline.org

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ginny CVSA Moderator
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scooky1

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Reply with quote  #33 
Hi Dee
I hope you're doing well, I was reading one of your last posts and you talked about getting drugs from the street, you know when you do get in the ER the first thing they do is take blood for the lab. All the drugs you have been prescribed are on line and the ER staff will know if there are other things persent and that will go in your file. street drugs will only be amunition for them to treat you worse.
But don't stay home,find a Dr who will help you, I know it's easy to say but they are out there, it just takes the time to weed through them and talk to as many as it takes,then when you find them you say "AHHHHHHH!" pluss it will keep you very busy and not have time to have bad thoughts,I doubt that any one of us here on the adult board haven't thought of checking out but the green side of the grass is the best place to be "it's a wonderful thing" so get up get out be on a quest, Screw those paramedics how dare them, get your paper work togather and see their boss, get tough a little bit.
The people who run this site can help you navagate the ER trouble, I was in last week and it was one of the best ER visits in years, almost a pleasure! any ways, be well. Steve

PS check out some of my posts regarding ER trouble and haveing the right paper work togather when you go into the ER.
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wynnak

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Reply with quote  #34 
Steve, great advice.

We recommend putting up a fight. I hate to say it.. but sometimes that is where I get my frustration out, is by arguing with people like that. But, it is always directed at the people that deserve it. I fill out surveys and questionnaires for each of them. If those are not part of the process.. I find a way. I start calling and don't stop until I reach the right person. It was the same with finding a doctor to keep us out of the ER. We still had horrific experiences with doctors.. But eventually found a good group. I know sometimes it can be very frustrating.. Even down right depressing. But I used that as my motivation. I wanted to make a difference for not only my son, but anyone that came after us. I have reported Doctors to the medical board (extreme circumstances). I have joined patient review boards for the hospital. Patient advocate groups that are working on getting ER treatment changed. Use it as your drive. Not a reason to be upset. Be pushy. It opens the door to change. 

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Blynda
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scooky1

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Reply with quote  #35 
oh yea Dee

If you do go in with the EMT's don't let them start the IV, tell them PLEASE! I would rather wait until we get to the hospital. most of the time they are just doing it because they want to practice on a real person.Be polite but just let them know it can wait, even if they say are you refusing me to help you? they just try to intimidate you, it's your arm and sorry to say this it pisses them off cuse they want to play with all their toys and you won't let them, you just need a ride to the ER sometimes going in by EMT gets faster service and sometimes not. the ER can be such a tarrible place where those people get to say what happens to you, Uh-Oh I am starting to get upset better slow down,ER people can make you so upset you have to try and stay calm, I think so.
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scooky1

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Reply with quote  #36 
Hi Dee
Well it happened again last night, as almost always in the middle of the night, I knew it was the real thing and I was going to the ER, gathered up my stuff/ puke bag/paper work and off to the ER, the first thing the Dr asked when came in the room was "what do they give you to make it stop?" when I told him this and that and then used the D word "dalaudid" he got real cold and started with the "we don't use that BS" I gave him the bundle of papers and he left the room, about twenty mins later the nurse came in and hooked me up IV, the DR walked back through the room with my paper and dropped it off, next thing I knew the nurse was there with the meds including the dalaudid, 1 hour later I was on my way home.
Pretty sure you guys are tired of hearing me go on about the paper work but it seems to be helping and it took me years to get a Dr to do this and I hope you have the info to use to get your Dr to help you at the ER , the other thing I had going in my favor was there was someone with me and when the DR started with the negative RE drugs she made him look at the papers. Good luck Dee
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jojo2059

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Reply with quote  #37 
Quote:
Originally Posted by Deidre
And could you please tell me how to pm you? I'm not too smart with this computer thing!  Again thanks for your reply and advice!
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jojo2059

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Reply with quote  #38 
Deidre what shot did you get to stop the pain & vomiting?
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wynnak

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Reply with quote  #39 
To PM someone, Click on their username in the left hand boxes. It will take you to a page that tells you if they have that option in their contacting column. Usually on the left side as well. 
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Blynda
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Deidre

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Reply with quote  #40 
Thanks to all who have posted and replied. I'm sorry I haven't visited here for a while. June was not a kind month. I will say this tho, Steve is right about getting your paper work in order. I now have a folder with a lot of info on CVS and a set of clothes, I'm ready,. I wanted to share what just happened with me tho. I am getting ready to have my bottom teeth pulled, my mouth is a mess from all this vomiting. I am getting dentures, yay. Anyway I have 3 vicoden. I had an episode start today and immediately took one, struggled hard to keep it down but I did and it worked. My pain stopped and the voiting stopped and I even got hungry after about 2 hours. I thought this might work because the only thing that ever stops it is when I go to the ER and I'm lucky enough for them to give me a pain shot. with me it has been either demerall, morphine or diladud. I got very lucky today by catching it early enough maybe, I don't know but I'm thrilled. I started keeping a diary of sorts with this thing and I'm hoping I can get my Dr. to give me just maybe 2 or 3 to have on hand. if so it would be a miracle for me. I go Friday to my regular Dr. Soooo we shall see.  And addressing Steves advice about letting the paramedics give an I.V. They gave up on me along time ago, I have very small and difficult veins so that's all I have to say and they don't even try.  I was honestly ready to try and buy opiates so I wouldn't have to go to the ER but again, Steve is right. They always take Urine and blood before they do anything and that would just really do me in. Where I live the Heroin Epidemic is so bad, they look at everyone like they are on drugs, especially when you are writhing in pain. They think you are withdrawing or something. Anyway, thank you all for listening and good luck to everyone.
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ginny

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Reply with quote  #41 
This is wonderful news Deidre!  I am so happy to hear that Steves advice helped you.  I hope your doctor will listen and allow you to keep emergency meds on hand.

I think that Dr. Fleishers recommendation that treatment begin ASAP is based on his past experience on how often cycles are controlled by administering helpful medication very early on.  He did not agree with ERs having those in a CVS cycle wait for hours in an ER before treatment was started.

Thank you for letting us know how you are doing.  We have been concerned about you.  Such good news that you were able to abort the cycle early on.

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ginny CVSA Moderator
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Deidre

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Reply with quote  #42 
Thank You Ginny,   I had a question for you or anyone reading this. Have you ever heard of anyone that has just stopped altogether? I haven't heard anyone talk about that. Also, My neighbor had a suggestion for me. Because 9 times out of 10 I ride this thing out at home, she said I just set a video up of what I actually go thru and try and get My dr, or Dr.s to watch it. She cant handle it, she comes and checks on me and ends up crying and begging me to go to ER. My son has watched me for over half his life now and all he says is please go.   I don't know about that but it would be a wake up call for someone to watch how bad I am for 24 to who knows how many hours or days. Was wondering if anyone else had thought about that?  Its not a pretty site at all
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wynnak

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Reply with quote  #43 
I think you would have a difficult time getting them to watch a long video. But Snippets of, may not be a bad idea. We use pictures and videos for other medical issues.. If nothing else could be informational for patient advocates when you have bad treatment. 


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Blynda
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ginny

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Reply with quote  #44 

You tube has some video of cycling too.  I think they are edited.  But I agree with Blynda, watching at least part of the horror of a cycle might be very helpful.  Maybe even use the video to try to set up care within the ER protocol prior to the next cycle?

For long term going without a cycle, yes. I have known others to go even decades not cycling.  Usually when people improve they leave the MB.  On occasion someone might post an update on doing well.  Some others are later diagnosed with a different condition that is treatable.


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ginny CVSA Moderator
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scooky1

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Reply with quote  #45 
Hey Dee
It's been a while, hows it going? I once went almost two years without an episode and was sure it would never happen again. kinda like I feel today! haven't been to the ER in almost a month and hope I'm on a long run of free time. pretty sure/maybe! youtube vids on CVSA? Dr's talking, people puking and poor young people and there stories and a TV star! informative and at least we are getting some air time.
Don't know how you do it(staying home) I one time lasted 3 days before my girl friend took me to the ER I was in Bangkok and the Hospital was great, they didn't except insurance from America four and a half days/Dr's/room(suite) and meds $650 (Bumrungraud hospital) on road #1 cable TV and a sponge bath everyday, the dollar was strong then, about 1999/2000. the best ER ever.
But CVS going away forever, I haven't heard of that. I was told once you have it thats it and all the years of this tell me, could happen/maybe/ it's possible, doubt it. but thats just me. did you get your dental stuff done? I am going through some of that and my dentist is great about giving me gas to stay relaxed. anyway just thought I would check in with you, hope you are having some free time, take care.
                                                                                                                                                            Steve
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