I think it's great to be able to say that everyone is covered, pre-existing conditions like lupus! However, there's only so much cash to spread around, so even with such a tax increase as this is, I only see that more care will be delivered to more people for less money. Quality has no place to go but down and that really concerns me; the people who need quality the most, people with pre-existing condition, won't receive what they need.
You can COVER EVERYONE, but that's a far cry from giving everyone what they want and NEED. We can do better.View Thread
Doin time, The thing is, there are SOOO many things that can complicate lupus and even if there was a LUPUS doc, he/she couldn't possibly know all there is to know about every system that is affected.
That doc would have to know each dark dirty secret about the skin, the inner mechanisms of ALL the effects on the heart and the CATRILLIONS of side effects that lupus can have on the lungs, kidneys. all the organs.
That is too much for one person to know. No one could EVER know that much and be fluent in it; it's sort of like imagining every spoken language on the planet and being fluent in the language and the culture of each language. That is simply too much to ask of any one human being, though it would be more convenient for us.
More convenient; ah! I wouldn't need to drive 150 miles to see the lung specialist, and the cardiologist, inconvenience myself with tips to tons of other 'eulogists!'
But I think of the question that I'd rather get the best care tat my rheumie has referred me to, than get the good care from my rheumie. I let him steer the ship, but he can't know all about lupus, RA, psoriatic arthritis, plaque psoriasis, Crohn's, osteonecrosis and ALL THE complications of ALL those illnesses.View Thread
Dear Doin time. I'm not in the referral biz, but I've lived a lot of places and you said you've moved in search of better docs, but hadn't found them. Hey, maybe I've lived where you are! Do you mind letting me know roughly where you are and I'll let you know if I've heard of anyone.
I also belong to a support group on yahoo and there are lupus patients. I also have a lupus blog and 'know' online a ton of lupus bloggers who are nurses or in the medical fields and might have a handle on who's good and where! I'm also a nurse and have a few thoughts. AnnieView Thread
I was amazed at what pain clinic people did. The doses of meds they had me on were tiny (like 1/2 a pill of ultracet and a tiny dose of another med) but by my taking meds frequently, it kept up a level of analgesia in my bloodstream, so that I was free of pain on very tiny doses of med; then able to work.
You've run into a bunch of nurses, eh? It's hard to be a nurse with lupus because of the pain. I had sjogren's when I was nursing and then about the same time as it became lupus, I stopped working; that was about 14 years ago and I really miss working. And working in nursing.
Have you tried a pain clinic? My rheumatologist referred me to one and had my taking tiny doses of various painkillers, but keeping a level in my blood of the analgesics. It didn't snow me at all. The pain clinic had 2 physicians on staff who worked with a PharmD. The pharmD would make recommendations and the physicians (anesthesiologists, I think) would write the scripts if they believed the PharmD was right (pharmacist ran the show, there!!!)
I hate to think of your trying to work while in pain. Check and see if pain docs can help.View Thread
"Afterall SLE is a disease and when you have a "disease" you usually see ONE doctor who should take care of it...."
Because lupus has so many side effecs, no one doc can be a specialists in ALL of the areas. Rheumatologists care for diseases other than lupus (RA, psoriatic arthritis; ALL AUTOIMMUNE DISEASES.)
I see a cardiologist for cardiac complications related to SLE, a pulmonologist who has a specialty in autoimmune lung diseases for my pulmonary complications, an orthopedic surgeon for my ortho complications from lupus. I'd love there to be 'one stop shopping,' and I do. MY RHEUMIE. But, the cardiologist, my PCP, my neurologist, pulmonologist and ortho are are integral parts. In this case, my PCP oversees all, but often, rheumies do.
Then there was rheumatologist with a SUBSPECIALTY in lung disease. I suppose if I felt that my pulmologist wasn't up to the task, but he is.View Thread
"I actually had doctor in Manhattan, NY who told me I shouldn't read & then handed me a prescription for antidepressants. "
Docs often react that way when people read things on the internet, because unfortunately, some people take as GOSPEL TRUTH everything they read on the internet and they the doc is asked questions like, "WHY HAVEN'T YOU DONE THIS?" (When the conversation could easily be:
Patient: "Doc, I was reading this on the internet, could it help,AND IF IT COL'T, tell me why.
The docs who treat lupus patients ARE rheumatologists; your internist can also treat it, but lupus is a disease with a lot of quirks. If your rheumatologist doesn't meet your needs, there may be other ones in your town.
Often the scrips for antidepressants in lupus are because someone IS depressed. I mean, who wouldn't experience a bit of sadness if they were used to one level of activity, then had to abort that one and settle for being so much more sedentary, having to settle for pain on a daily/hourly basis? Depending on the kind of pain, antidepressants can easily be used to treat pain; both psychic and physical pain.
Antiepressants also have another use: they can help sleep and the more sleep you get, the less pain bothers you. So, if your doc gave you a script for an antidepressant, and proceeded to tell you, :take it at night, " he may be using the anti depressand for that.View Thread
A good 10 years ago, I began getting short of breath, but it was sooooooo subtle, but not so subtle that I couldn't notice it. Everyone said that 'of course it's so, you've just been diagnosed with lupus, you've been in the hospital and YOU'RE OUT OF SHAPE! (I was an athlete).
The shortness of breath progressed and after ruling everything out under the sun, successive pulmonary function tests showed that since I was negative for everything else: Shrinking Lung Syndrome was the diagnosis at an autoimmune disease lung clinic.
I started Cell Cept in May, my pulmonologist said that in SLE, it works in a few weeks, but in Shrinking Lung, the doc said the EARLIEST he even thinks of looking for results is 3 months. In the meantime, my anxiety level is sky high, my SOB continues to progress and just a short shower does me in for 1/2 hours.View Thread