Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
It might be better for me to wait to start this topic. I have been so exhausted lately I can't tell if I am making sense in emails, etc. But this topic has come up quite a bit recently so I'd like to try to help.
By no means am I judging anyone. And I'm not excusing ER people. I'd like to give insight into the why... Why ER people act as they do and what you can do.
Healthcare work is exhausting. People lie to your face everyday, for a number of reasons. "He didn't hit me... I fell." or "I'm in pain, 10 of 10." But they're smiling. Compassion gets killed off pretty fast.
It's about assumptions... stereotyping... to avoid being "burned" by people who want the drugs not for pain relief, but because of addiction. No one wants to enable an addiction.
ER "people" (doctors, nurses, PAs, NPs, etc.) get cranky when people with "chronic conditions" come to the ER for management. The assumption, right or wrong, but right sometimes (at least once, not with you), is that you are not getting pain control from your relevant doctor, because he won't give it to you. You are "drug seeking" not for pain control but addiction. OR the other possibility is that YOU are not managing your condition well, not being responsible, and have to "use" the ER inappropriately. That is when you hear, "Oh you just want a med refill." Read, stop wasting my time.
It's funny how they get bent out of shape, right? They're thinking why can't people come in with real emergencies... but 90% of the time we see truly non-emergency stuff. Diaper rash, colds, ear aches. In their mind it's abusing the ER. It gums up a system meant to respond to life and death emergencies.
The ER is not the best place to manage chronic conditions. Yes... we know. But for uncontrolled 10 out of 10 pain, or anything new or unusual, go right ahead to the ER. That's darn well what it is there for.
Make it very clear this is above and beyond your normal, and normal is pretty crappy... Is NOT normal at all, and we live with pain every day... Make sure they know you follow up regularly with your rheumy (or whomever) and he will hear about it ASAP, but you need help Right. Now. Please. Here are the meds I take. I take them as prescribed. But this is something special. You might even have pain control that works most days but not this day.
So, be honest. Be nice if you can. Don't be overly dramatic. Make it very clear you are not an addict. (Don't be an addict, please.) And clear you're responsible with your condition. If an RA patient said to me "I can take a lot, but I can't take what is going on today." That would make my ears perk up.
I hope this helps you guys.
By no means am I judging anyone. And I'm not excusing ER people. I'd like to give insight into the why... Why ER people act as they do and what you can do.
Healthcare work is exhausting. People lie to your face everyday, for a number of reasons. "He didn't hit me... I fell." or "I'm in pain, 10 of 10." But they're smiling. Compassion gets killed off pretty fast.
It's about assumptions... stereotyping... to avoid being "burned" by people who want the drugs not for pain relief, but because of addiction. No one wants to enable an addiction.
ER "people" (doctors, nurses, PAs, NPs, etc.) get cranky when people with "chronic conditions" come to the ER for management. The assumption, right or wrong, but right sometimes (at least once, not with you), is that you are not getting pain control from your relevant doctor, because he won't give it to you. You are "drug seeking" not for pain control but addiction. OR the other possibility is that YOU are not managing your condition well, not being responsible, and have to "use" the ER inappropriately. That is when you hear, "Oh you just want a med refill." Read, stop wasting my time.
It's funny how they get bent out of shape, right? They're thinking why can't people come in with real emergencies... but 90% of the time we see truly non-emergency stuff. Diaper rash, colds, ear aches. In their mind it's abusing the ER. It gums up a system meant to respond to life and death emergencies.
The ER is not the best place to manage chronic conditions. Yes... we know. But for uncontrolled 10 out of 10 pain, or anything new or unusual, go right ahead to the ER. That's darn well what it is there for.
Make it very clear this is above and beyond your normal, and normal is pretty crappy... Is NOT normal at all, and we live with pain every day... Make sure they know you follow up regularly with your rheumy (or whomever) and he will hear about it ASAP, but you need help Right. Now. Please. Here are the meds I take. I take them as prescribed. But this is something special. You might even have pain control that works most days but not this day.
So, be honest. Be nice if you can. Don't be overly dramatic. Make it very clear you are not an addict. (Don't be an addict, please.) And clear you're responsible with your condition. If an RA patient said to me "I can take a lot, but I can't take what is going on today." That would make my ears perk up.
I hope this helps you guys.
I don't want to offend anyone, but I have something to say, and stink at walking on eggshells.
If you are new to RA, and have no option like a PCP or rheumy, yes the ER is for you too. Make sure they know your situation. Who knows, they might be able to help. An ER doctor should be able to bridge you to an appointment with steroids. Should.
If an urgent/immendiate care center is available, that would be far less expensive.
To further illustrate life in an ER, this was a true period of about one hour...
"Working" a child who drowned, parents in the room, distraught as you might expect...
To grownman with a cold, who is being quite rude...
To a nice lady with a chronic condition,Crohn's, maybe....
It's up to us to maintain our humanity and shift gears. Some are better at it than others. Some shouldn't be in healthcare at all.
The biggest gripe I have is that the trip is gonna be an all nighter whether they are 2 people there or 20. I feel like they are understaffed here where I live. I'm not sure if this is the case everywhere but I'm sure a lot of people have dealt with this same situation.
As far as my posting I'm the same way. I think the way people read text can appear different than they intended it to sometimes. Some people can post and it's so well thought out and just put into the perfect words. That's not me. The other day I told my wife that I was happy because I hadn't had a lot of troubles out of my ships and houlders since my last visit to my rheumy. Lord help us. Have a good day and nice post.
For us going to the ER is an absolute last resort. I've never been there myself but had to take my wife there once last year.
What gets me is the abuse of the service. A few months ago while waiting at the hospital lab for blood work, I saw a woman come in with a ~10 year old daughter who was at the registration desk heading for the ER. She was there because her daughter hadn't gone to school that day because she had a cold. This kind of stuff just makes be come unglued.
I appreciate the advise you have given being both myself and wife are chronic pain sufferers. We both have it controlled fairly well with meds from our PCP but I know the day may come when either of us has that day where we can't stand it. We've both learned that if we wait it out we can usually overcome that striking pain in a few hours. But our PCP is easily accessible to us being in a very rural clinic. We can call her and get a call back usually within 2 hours. If needed a prescription can be sent electronically to our pharmacy within minutes - then it's just a 15 minute drive to get it.
Having your med list with you is so important. The local hospital has just started with patient portal records but it doesn't show it all being my Rheumotologist is not in the hospital system.
I often think about the ER staff when evaluating a patient. It must be so difficult to make an informed decision without knowing the patient's history and/or meds they are taking. Since I take so many I have a list printed out so my wife can grab it quickly if needed.
I don't know if this is an ER replacement - I've seen one of those Med Express type places when we were at the city a while ago - no such thing around here. Should a person with a non life/death situation be using them instead of the ER?
I don't like the little "E-care" or "Med express"...to me, if you feel badly on Thur or Friday, don't wait - get on the horn to rheumatologist. If no help, get your PCP to see you.
And for most of us - address some of this now. Next rheum. visit, find out what your doctor would want you to do if a sudden flare got out of control. Mine gives his patients a 30pill pack for taper and expects a phone call if we have to bust into it. He makes it clear that it is for an out of control flare when we can't get in to see him.
If it's a sudden fall, non RA related, etc - don't call him. Call PCP or go to ER if severe. If we get sick, again PCP. If you know it's not worthy of an ER visit, but PCP is out and doesn't take calls, perhaps an urgent care place is okay. But, you really have to be sure they know what your RA drugs do...and the can't just take a stab in the dark.
There are many things we can address ahead of time. But there are times when the ER is our only option. Make sure you go to the hospital your PCP and/or Rheumatologist do calls in. That will greatly help your situation.
I've got an uncle who likes prescription pain med. He visits the ER for way too many things. It's almost like he's happy when he gets terribly sick or pulls his back or something - because then there is evidence of something wrong and he knows he'll get "relief". These are the people that make it hard on us. And yet, my uncle isn't a bad man. He pays his taxes, has a good job, even a doctorate. But, he prefers no pain at all to any small pain and prefers that narcotics provide the relief. My family (which includes three doctors) can't even be FB friends with my uncle. There is no trust that he won't violate cleverly to get his pain relief....short of illegal activities.
As I said, we have to plan for our ER trips and avoid all that aren't necessary so that when we are there, it's serious business!
If someone with an uncomplicated cold shows up at an ER, they should be shown the door. That's ridiculous.
Do ER people know how people arrived? For example, Jen (51percent) arrived via ambulance from her PCP's office. I would hope that would remove the suspicion of drug-seeking. Also, with the number of surgeries she has had, her skin must look like a patchwork quilt, noticeable to whoever was attaching and removing EKG leads.
Bcatz, can you really get into your primary or rheumy that quickly? I can't.
There are several urgent care centers where I live. Our family has used them for: an arm we weren't sure was broken (it was); a badly cut and broken finger; a possible strep infection two days before an audition for college; a dog bite; a sprained ankle; a couple of sprained wrists; and myriad other strep infections, among other things. We have saved the ER for incidents like a badly broken arm, a cut exposing tendons, a sick newborn, an aortic dissection (that one was fun). For colds, flu, most sprains, cuts that look like they'll heal, stomach bugs, etc., we spend neither the time nor the money to be told it will get better. For myself, if there aren't flames shooting out of it and no limbs have fallen off I tend not to go.
There seem to be two different types of medical personnel. One won't give you pain meds for a severed limb, the other offers them at every turn. The orthopedics office I used last year must have offered me narcotics five different times, but wouldn't get me in to see the doc, or give him time to actually look at what was going on. It would be nice if you could get the type of care you need when you need it.
Right now I'm in a whole lot of pain,- but it's not ER-worthy. It just sucks, and having them write a script in the ER would be a waste of their time, and mine.
I read something once that I thought was very spot-on. It was about how people really don't understand the pain rating scale. That so many people say they are in "10 out of 10" pain - when in reality, a level "10" pain would be equivalent to being actively mauled by a grizzly bear, lol.
So I've never had a 10. I consider even the worst pain I've ever had to be 8 because heck, I was not being mauled, eaten alive, nor was I crushed between a steering wheel and mangled car parts. To me, THAT is a "10".
Waking up from posterior total hip replacement surgery (this was a 13 inch incision through muscle, fat, to the bone) and having to wait several hours for pain meds due to a computer glitch in the hospital system - I'd call that an 8. Yeah, it hurt, and badly. I was moaning, vomiting, fainted even. But still not a 10. I think the person down the hall with his arm cut in half from an accident was justifiably 10....
TL;DR - great post, confoosed. ; )
And Rheumatologist has a pretty awesome portal with email. They reply same day as long as it's their business hours. Rheum. doesn't have on-call though.
Scarlett - I totally understand the pain scale differences. My daughter said her pain was a 10 and it was strep throat! I'm sure they expect that with kids but still. LOL
Coaltrain,
The Medexpress type ("doc in a box") places are a good alternative for some things that could bring you into the ER. Yes, you're right it's good for non-life and death, non-life altering issues. Remember though, they usually do not have higher imaging, like CT (CAT), and probably only basic x-ray. So if you think you have a abdominal issue, kidney stone/gallstones/bowel issue, or a surgery issue, you may opt for the full ER. Urgent care is the place for people who do not have a primary care physician, or can't get in to see him fast enough.
People who maintain a relationship with a specialist or PCP can usually avoid the ER, for everything but the worst stuff. That's the beef with "chronic pain" or "chronic conditions." They'll almost always ask you, "Have you seen YOUR doctor for this?" ER docs are never your PCP - people actual believe that, when they come in frequently! It goes like this... person comes in weekly or more...
ER Doc. "You know you have gallstones, right?"
Patient. "Yes."
"You need to follow up with your PCP and surgeon. They should be handling this."
"But you are my PCP!"
That's good to hear. It's always up to us to remember to feel compassion.
It always amazes me WHY and WHAT brings people into the ER. Not everyone is addicted to pain meds, some people are addicted to the attention they get.
You always pay attention to what exactly they are after.
Good point, a lot of people want ZERO pain, and ZERO inconvenience. It's amazing the intolerance for even the slightest discomfort.