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Life With Lupus

End of my rope


#1

Jesus is either gonna help me or not I was so sick last night I wanted to go to e.r because my rhuemys are so confused about my illness. I get rashes eye pain pain with deep breath and my legs are crumbling. My husband and my mom informed me there’s nothing they’ll do.


#2

I wish you the best and hope they find some way to help.


#3

have a plenty of good rest dear, hope your close ones will be there with you, get well soon :blush:


#4

Thanks they’re not being mean but the e.r does nothing a lot of times


#5

A word on the ER…

The ER can’t (and won’t do anything) They are specifically prohibited from primary care by practice guidelines, if for no other reason they are not qualified to treat SLE. What they can do is spend thousands of dollars eliminating any serious emergent cause for any acute symptoms you report. (thats what ERs are there to do, they are not "on call doctors)

If your symptoms turnout to be related to your primary diagnoses, the next time you return to the ER, the electronic medical records that pop up in Triage will lower your total “score” and you will find yourself in the waiting room for hours while folks with a higher triage score go in ahead of you.

If any of your complaints involve belly pain (and there is no emergent cause) lower back pain (again with no acute recognizable cause) headache (again without a recognizable cause) or general pain and you are seen with the same complaint 4 times in 14 mos (this can vary by state or practice) you will receive a somatic pain label or worse drug seeker handed two tylenol from the room next to the triage area and refer you to your PCP.

If it hasn’t happen in your ER yet it will. I’m not trying to be harsh, but the fact is the ER is no place for chronically ill folks. They won’t get treatment, and they prevent folks who need immediate treatment from getting it. As ERs get busier and busier the staffs under extreme pressure are becoming less tolerant.

What you can do however if you need immediate help is wait until after dinner and call your PCP after hours line (and hope your doc isn’t taking call that night) They MUST contact you (here practice guidelines are your friend) and you are far more likley to get some kind of help than in the ER.

Of course your Doc are confused about your disease, if they weren’t no one would have it. As it is an immune system disorder every patients disease is different. so consequently each persons treatment varies widley too. It takes time LOTS of time. Some meds take 3 - 6 months to have an effect. intermediate treatment can mess it all up. The folks here get that and I am sure they can get you through it. or least tell you they get it…

TJ


#6

Wow thanks your response was very helpful


#7

Janelle you look like you feel sick. I really feel for you.

Urgent care was a better place for me rather than my primary doc and the ER. I went in with my various symptoms, from a smashed toe to severe knee and back pain, fever, name it. Seemed like they had more empathy. They taught me the ropes on getting good doctor referrals. At first a lot,of them said I had a severe cold when I c/o my lungs–by the second time I got a referral to a pulmonologist. I hung there until I was finally diagnosed after being sent to the ER from UC for pleural effusion and then hospitalized. Actually an ER doc dx’ed lupus. The symptom was so blatantly lupus, that the hospital had to refer me to a rheumy. Urgent care is much better than the ER. Cheaper too.

Hope some of my experience helps you.


#8

Thanks girl… I will deff do that if I feel completely lost