View Full Version : What's the point?

06-24-2009, 10:42 PM
Hello all,

I'm sorry to be the one who starts a thread like this, but I feel as though I have to. Be forewarned, it's ugly in places.

I have a question for the so called medical professionals who claim to take care of us-

Do you really care? Do you even try to learn about the characteristics of auto-immune diseases? Do you care one bit about a group of your fellow citizens who are dealing with a chronic, and sometimes fatal disease? Or are you happy to just spend your career ignoring the obvious. Are you so entrenched in your own greatness, that you cannot see an ever growing group of people who need you to use your skills to try to come up with the beginnings of a solution, and maybe someday, a cure?

Why do people who believe they may have Lupus get turned away like they are some hypochondriac? Why do you talk down to people as though they are trying to somehow profit from their illness? Do you really think that people "act" like they have an auto-immune disorder just to make some sort of profit, or somehow have some personal gain? I can assure you from firsthand experience, that there is no amount of money or personal notoriety, that is worth this.

People who have been diagnosed with Lupus, have in many cases, reported many years of indifference from their so called "healthcare professionals", and far too often, have seen abusive behavior from those who pledged in their oath to "do no harm". That means YOU-Doctors.

I had a so-called "doctor" say to me not long ago that he didn't like my "attitude" after trying to intercede on a patients behalf. I say, too bad-deal with it. What do you have to say for yourselves? If anyone in the "healthcare industry" actually see's this, we would like to hear what you have to say. We're listening...


06-24-2009, 10:52 PM
Although i,m new and in the ugly process of getting diagnosed,as of now i was refused by my family doctor to be reffered to any specialist, I could not say those words better!
Thank you Rob!

06-25-2009, 05:46 AM

You are so right, if they would at least start to listen, that is all we are asking for, LISTEN to us. After that, try to understand and than figure out how to make our life a little easier. Help us fight the pain, the fatique and act like you care. Every time I went to see my rheumy with a new symptom, he would say " it's the lupus" , I am thinking " really, no s..t?" Well I have figured that much, what are you going to do to help me? It was even worse, before I was diagnosed, every doc. just said that I was depressed and just wanted to dismiss me with a prescription for anti depressions in my hand and send me on my merry way. I felt like they said " here take this and shut up".
I have stopped asking God to heal me, now I ask for a doc that understands and cares, preferably a doc who has lupus.ONLY HE WOULD UNDERSTAND.
I think our frustration is almost as bad, as our illness.


06-25-2009, 06:41 AM
Hi Rob,
Glad someone else feels like I do about the medical profession. I just thought it was the VA.

I just got a copy of some of my medical records. Seems that I have lupus, SS and MCTD. The SS and lupus has been going on for years the best I can figure. I don't have the joint pain like most. Being a cowboy all my life I use a equine joint supplement for years, maybe this is why I don't have the problems with my joints.

Monday we talked to the Patients Advocate at the VA, he wrote a letter to the Chief of Staff for us requesting that all our questions be answered and a treatment plan put together. The VA should be different but its not. We are just a number and no one cares. After 32 years of being a Patient Advocate I am the first Lupus male he has seen.

Why am I still not on any meds?????????? :zx11pissed:

06-25-2009, 09:30 AM
I know what you mean. Most of the time I think doctors are just trying to make a buck and see as many patients in one day as possible. I am in the process of trying to switch my PCP to a doctor that practices like they did in the old days. They will make house calls if you need them to, they give you their personal cell phone numbers, they have a limited patient load. This, of course, will cost a little more but I think it will be worth it with my history. I'm sorry you're so frustrated. Some of these people you just want to ask, "Did you really and truly go to med school?!" And David, I think it's worse at the VA because I think they are totally overloaded with patients.

06-25-2009, 09:57 AM
Yes they are over loaded. One of the lab techs told me that she goes thru over 100 pair of gloves a shift. There are 8 lab stations. How many people are they pulling blood on a day???????? The VA in Montana is not busy like here in SA but all they care about is that you smoke and not that you might have lupus, SS and MCTD. My PCP didn't give a s*&*. She should flip burgers at McDonalds.

My hemo doctor, his first language was German. I could not understand much of what he was saying. My rehume said One good thing about the VA its free and you know just what you are paying for. Isn't that great. We put our lives on the line for this country and we get this in return.

06-25-2009, 10:13 AM
Rob, I know how you feel. I've been through some pretty bad and uncaring docs.
But please know, there are some pretty great exceptions out there.
My most recent PCP is pretty great. She listens to both my hubby and I, and she acknowledges that we are well-educated, so she speaks to us as equals. She's not afraid to admit when she's in over her head, and sends me off to a specialist with no qualms.

My ENT who does my Botox shots is a sweetheart. He gladly comes to speak at our SD support group meetings. At my last appointment, he gave me a great big hug good-by. He's sending me to a friend of his who practices in San Francisco for my continuing care. He also reminded me that he would still be here when I return in three years.

My new rheumy blows me away every time I see her. She listens to my complaints about symptoms, and searches for ways to deal with them. She also doesn't talk down to me, or ignore my complaints, as my last rheumy and both orthopedic surgeons did.

It has taken some searching, but I've found the good ones here in San Antonio. Now I'll have to start a new search in Monterey.

06-25-2009, 11:12 AM
The Drs. don't know how to cure this disease, so they make us look like the bad guys. They don't have the answer/s for us so they are callous and curt with us. Also, they have used the same medicines to treat this illness forever. Where are our revolutionary new treatments? We definitely are not very important in the eyes of the so-called professionals.

06-25-2009, 01:45 PM
everything that each of you has said is the truth....

Rob, i think we should save your letter and use it on the certificate that we present to the winner of our "wort dr." competition.

Marla, thank goodness you have found good drs.....after several appointments with the wrong drs., i have finally found a great team that respects me and what lupus is doing to my life.

however.....look out everyone.....i am so afraid that things are about to get worse in the medical world.

06-25-2009, 02:38 PM
Once again Rob, you say it so perfectly:yes: ANd i too agree with Phyllis that all of you who responded have it on the mark as well. Its so nice to HEAR those words Rob from others like ME. I felt SO ALONE (even with Carl there for me) before i found this site. I left a drs office one day BEFORE i found this site, and i cried ALL the way home. I started QUESTIONING MYSELF and "am i sick" or IS IT "in my head". I had NO ONE who FELT MY ACHES and PAINS. Now I DO and it has done WONDERS for me DESPITE the long road i have been on AND continue to be on. I am going to print out your words of wisdom Rob and im going to take it to my next appt with whatever dr it may be to shove i his or her face, it probably WONT matter but, ill FEEL BETTER!!!!

Im sorry you are having a rough time of it Rob. I wish we could take away your pain at this moment. Thinking of you:cute:

06-25-2009, 04:52 PM
I wasn't sure what sort of response I would get to this thread. I really don't like to complain and I don't like tearing into people with anger and negativity all the time. But, between how I've been treated, and reading all of the stories here about nightmare Dr/Rheumo's, I'm just totally pissed off at the whole situation. I'm very protective of my friends. When I come here and read about how terribly some of my friends have been treated by these incompetent arrogant so called "professionals", it makes me absolutely furious.

I'm glad I was able to put into words how so many of you feel about this subject.


06-25-2009, 05:20 PM

Reading this makes me think we might share part of a brain. I am worried about this exact thing for my next appointment I have with a new doc. It's shameful that our healthcare system has become a thing based on fear, greed, ignorance and shame. I hope one day in a generation not to far away that this practice will have changed and will be seen with the light of truth that these behaviors are a direct violation of the hippocratic oath our doctors have taken to swear to protect us, their patients, and that the same doctors and future generations of doctors will see the error of their ways and start to work together with us to reach new goals in health and health research.


06-25-2009, 05:53 PM
Me being a Nurse with Lupus, get it double sometimes from the arrogant drs! They cant stand me having a little knowledge about something that i might call in to question their answers to me! SUCH A GOD COMPLEX! TICKS ME OFF TOTALLY! WHO THE HECK WANTS TO BE FREAKING SICK!!!!!! NOT ME!!!! sorry! Kathy

Angel Oliver
06-26-2009, 09:52 AM
Oh Rob,

A thread im experienced on and yes....i complain allot....thinks its a new hobby...not by choice though.You know the treatment ive been given and id never want another person to go through it.Even to be drugged up n left outside rocking on the floor in pain....in my nightclothes.
I have come to realise, i am just a number,not a person....sometimes i feel like an animal..except there are no railings...we go in one by one....the doctor thinks ''next''.Sometimes they are emotionless,sometimes,rude n ignorant,sometimes like my old doctor...send patients away to deal with a dead patient cause its easier, no thinking involved,a break away from the office.
I saw my rheumi Wed to get inportant bloods back to confirm my diagnosis...he yawned....then kept holding it in...looking at me,yet i could see he was thinking of his dinner.I got no answers till i asked...he just said....it must be chrnic fatigue syndrome....again i said you dont sound sure.....as he interupted me n gave me pills to stop my leg cramps.Must have been a good dinner he was thinking of...cause he didnt give me no answers!!
I let him get away with it this time...face throb lol,,,next time.....just you wait :)
So Rob....yes we so understand you!!

The Complainer OBE/MBE/PHD :) xxxxx

06-26-2009, 05:19 PM
Here here Rob.

Im gettin fed up with seeing my friends so called "experience" with the medical proffesions that are "sposed" to be looking after us


06-26-2009, 06:23 PM
I am so sorry that most of you have doctors who do not listen or just do not care. I feel very fortunate that i have a wonderfull rheumatologist who really cares and understands what i tell him and always tries to find a solution to my questions. It is my family doctor who has and attitude sometimes. Bonita

06-26-2009, 06:25 PM
I am so sorry that most of you have doctors who do not listen or just do not care. I feel very fortunate that i have a wonderfull rheumatologist who really cares and understands what i tell him and always tries to find a solution to my questions. It is my family doctor who has and attitude sometimes. Bonita

I have kept a journal from the first day i went to him and have copies of all my tests and hospital stays and he knows i ask a lot of questions and that i really talk to people on this website and he thinks that is great.

06-27-2009, 07:47 AM
I hear ya Rob. I hadn't been in the "frustrated w/doctors" position until recently. & I was only frustrated w/the hematologist and people who draw my blood. I had a great experience w/the cardiologist, lung specialist, and gastroenterologist. I have an amazing Rheumatologist. I've decided that, if I'm not 100% satisfied, I'm firing you & looking for someone who wants to make me better. I'm firing anyone who wants to rush in and out. I'm firing anyone who wants to rattle off terms and names and meds and won't give me the common courtesy to enable me to be fully informed. I think it's up to us ultimately to determine who provides care and treatment. We have the power to select the best doctors. If you have doctors that you're not fully satisfied with, find new ones. This is about our health. I realize now, I have to be my own advocate.

06-27-2009, 11:45 AM
Thank you for saying what so many of us are always shaking our heads thinking! It is so tough to feel so bad and have no one who is really helping. Sometimes I feel as though I am being laughed at. I think part of the problem is that people turn away from things they do not understand and because lupus is a hard disease with so many faces they turn from it because they can not put the medical finger on it. I don't know. All I know is that over the years I have realized that I am my own advocate and that is I want something done I am going to have to put a lot of leg work in to it in order to make sure it gets done. That, in itself, is exhausting and a shame that we have to look at it like that. I am thankful for one thing, that you all are here and that we have so many minds coming together that a lot of answers we need, well, we can find a lot of them right here! Thanks for this thread and thank you for just being a part of all of our lives!


06-27-2009, 12:11 PM
I feel the same way, Rob...even though I'm thrilled with my doc. He validates everything I say, takes me under his wing, and makes it all better. It also helps that he was my grandfather's rheumy (he has RA) before he moved to my end of town. I couldn't be happier with him...but it does tick me off to no end, because all the OTHER docs before him treated me just like you say. It's "oh, it's nothing" and "it's all in your head" and "we're out of options." No way to treat a person in obvious medical and emotional distress!! I'd love to cold-cock some of the docs I've had in the past...seriously. To let them feel one ounce of the pain they caused me...still wouldn't be justice, but I'd sleep better at night. And to think...they are still treating patients...ugh.

To everyone that has a sucky doc...THERE ARE GOOD ONES OUT THERE! Don't give up because of some a-hole who won't listen to you! It took me 16 years to find my answers...but they came, and at the hands of an amazing physician!! KEEP THE FAITH!!

06-28-2009, 01:49 PM
I know exactly how you feel. I spent 7 plus years before being diagnosed and was happy I had a name to put to "my problem" :shocked:

Dr.s kept telling me it must just be hormones ect . :wacko: finally a Dr.s assistant is who ran the correct tests.

So you are not alone with being totally fustrated with Dr.s


06-28-2009, 07:26 PM
I've been thinking about this thread a lot this week. My wonderful new rheumy is trying everything that she can think of to get me "the best I can be" before we move. She's now sending me to an ophthalmologist for the dry eyes that the Sjogren's causes.
She also started me on the artificial synovial fluid injections for my knee, and seemed surprised that the OS hadn't done it. That first injection has helped so much! Coupled with the MTX injection, I'm feeling almost normal again (first time in 2 years) and I can bend my knee and even climb the stairs!
I keep thinking about the a**hole OS. At my 6 week post-surgery check-up, he told me that I should be pain-free. When I tried to explain about how much pain I was still in, he just yelled at me to exercise, lose 20 lbs. and said that "he refused to be an enabler in my play for sympathy".
I dragged on through 3 more months of teaching in that much pain! Now, thanks to what the new rheumy has done for me in just a few weeks, the pain is a lot less, I have more energy, and I HAVE lost 10 lbs. That's all it took - someone to listen and actually come up with some solutions for what I was legitimately complaining about.
Delphina said that she would like to cold-cock a few drs. I sure would like to do to that OS if I ever see him again!