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Mr. Bun

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 #31 
"I think that's why I get so upset when someone comes on here and thinks they know it all."

Me too CupCake.  

This board used to be great.  now.....not so much.  I've just about had enough.
Lifesclue

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 #32 
I can tell that some have never dealt with lupus before or someone with some of my symptoms. The frustration I get and I am right there with them. Its the lack of trying that some of them present until another doctor pushes for it. I have a rheumatologist and she is supposed to be one of the best at the hospital. She is really good but she, just like most of the other specialist I have seen, doesn't think it is her area. Its just hard trying to get people to test and see if it is or isn't them.
Lifesclue

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 #33 
Dolphin

Its funny you mention that because I am at a teaching hospital and it is the main aspect I love about it. What one doctors see, another may not. I like how they operate and handle many of my situations but this one I can tell is not going how they thought it would. I can multiple different specialist all at one location and they bring people along to debate and discuss and I feel like I'm getting some correct answers medically through this process. I keep most of my paper work and most of it is on my online chart. Its how I track certain things and patterns in my health. Also, my lymphoma is in remission technically and tho there is almost a guarantee it will come back right now they are pleased with that. But the lupus does interact with it sometimes so it may return sooner than believed previous. I hope that I can at least get the lupus symptoms under control before I have issues with the lymphoma again. Not sure my mind or body can handle both again.
Dolphin

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 #34 
LifeClue, 2 rheumatolgoists didn't feel I was their field either.  I went to see a psychiatrist who said I should have anxiety and deepression when I have all these medical problems and in pain and the rheumatologists don't ever do anything and treat me that badly.  It sounds like ur proactive which is great.  The run around does get very frustrating and is more likely to occur when ur a complicated case and I always had to be the one to push the rheums.  Eventually 2.5 yrs later I got dx. Congrats on the lymphoma remmission !
Robinj

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 #35 
Don't leave me now Mr B
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Cakelady

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 #36 
Bun don't make my tired butt come to Canada
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Cakelady

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 #37 
I agree with Dolphin my primary doctor dropped me after over 20 years of being her patient. Her reason was that I am "to sick". My rhemy explained that some doctors want easy cases. Come in once or twice a year but with me she had to follow up with all my other doctors and when I saw my rhemy or cardio doctor they would send her their reports it was just to much paperwork and headache to deal with. I went without a primary doctor for a few years.

I am very lucky that my doctors know each other and they talk to each other. That makes a big difference

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Mr. Bun

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 #38 
I don't wanna leave.....but....I don't want the BS anymore.

I'm drooling, cranky, throbbing, grumpy, hot, lumpy & have a really bad gas problem.

Good thing we got off the phone CupCake.  ;0)
Cakelady

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 #39 
It was good talking to you we were worried about you
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Dolphin

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 #40 
cakelady I'm so srry that happend to u !!!!! :(     Thats horrible. Wat was that doctor thinking, that telling someone there too sick was somehow going to give them confidence ? I really hope they were only that way in the end and u didn't have to endure over 20 yrs of their bs. 

 My first rheum fired me as a patient. They misdiagnosed me with this 1 condition and gave me nsaids only. After months when they weren't working and I presented with photodermertatis and oral sores, I asked if SLE was possible. Rheum then fired me as a patient and told other dr's I'm a diffiuclt patient and question authority. Head of rheumatology dept at major teaching hospital dx'd SLE that day with no other labs needed and wrote in the report that I did not have the disease originally dx'd.  

 I did not go to a new rheum for 2 yrs and only saw pcp. I was under 21 at the time so it was the first time I had ever been fired by anyone. When I finally decided to try again, the next rheum cancelled my intial appt as they said you drop the last digit at the ends of ANA panels so mine is below 800, which is not even a titer.  Following rheum said they didn't understand why i was given the dx by the rheum who fired me, but said no ctd as no lung involvement and I have oral infections from bitting the inside of my mouth and lowered my HCQ and I got chest pain.  After teaching hospital, I was referred to another small town rheum who agrees with SLE dx. I think it has to do with their ego's and when patients aren't getting better or they don't know the anwser it is easier to blame the pt.  I am always scared dr's are going to fire me now.   I still have a bitter attitude toward rheumatology, but I think its well desserved.
taffylinden

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 #41 
Cake, it seems to me that when your PCP said you were "too sick," that translates into "I'm in over my head." It would be nice if docs put it that way instead of putting the blame on patients. And a doctor who wants just easy cases is not a doctor I'd want to go to even if I WERE an easy case. What happens when an easy case gets complicated?

Bun, I've left here a few times--a couple of them because I couldn't take the acrid comments. I've come to realize some people come on here with an attitude that does NOT sit well. One is the one Cake mentioned, the self-styled "expert." I'm reminded of a line from the old movie, "Funny Girl": "a stranger should be a little strange." It's a good idea to get to know people instead of acting like a missionary to the ignorant. Another is someone who comes on with a miracle cure to tout. Another comes on crackling with negativity. Once in awhile someone comes on who I think might mean well but who puts things in a way that raises hackles, inadvertently or not--and then goes ballistic if the reaction here is less than enthusiastic. And I'm not even counting the people who come on here pretending to be lupus patients for some ungodly reason.

But you know, the price for leaving is awfully high, I've discovered. You think it's lonely being sick? Try being sick and having nobody who understands. Please stick around. We need you here, and I think you need us, or at least some of us.

I hope you start feeling better soon.
Cakelady

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 #42 
My PCP that said I was "to sick" was a decent doctor for the most part. One thing she kept saying is that something was going to happen to me and it would fall on her. So in the end I think she wanted to cover her butt in case something did happen to me. The other issue was she never got along with my hubby because he would question her. When I did the year of cytoxin he had to take off work to go with me one day to see her. We got there and the staff said well she is assisting in a surgery so we have to reschedule. My hubby was mad because he had to take off work to take me and he let the staff know. Then my doctor called and said for me to be in her office the next day well I could not make it.

After that I went on my own or with my kids. But the sicker I got the less time she had for me. When I would call for an appointment she had nothing available. Then I got a letter in the mail on a S a t u r d a y. On Monday I called and I had to leave a message. She called back and said I was just to sick. She likes me and my family but she could not longer help me. She kept saying something would happen and she would get blamed.

It took me along time to trust another doctor like I had trusted her. But I have a great group of doctors. All of my doctors talk and if one can't see me the others try and fill in. I pretty lucky in that respect.

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Mr. Bun

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 #43 
Dolphin?  I hear you with the trust issues!!

Currently I have no rheumy.  Due to the fact that my last rheumy was too busy flirting with her resident to pay attention to me.  She is a scleroderma expert & is a darling of the Canadian government.  Gets many grants, does the lecture tour.....she's a big deal.  And no other rheumy wants to p!ss her off.....so.....I'm S-O-L.  Right now I have a GP (you guys call them PCP's) a dermatologist, neurologist, Gastroenterologist, an orthopedic & oral surgeon on call.  They take care of me just fine.  She humiliated me so badly the last time I saw her........I will NEVER set foot in her office again.

When doctors become doctors......do they think that every case will be a slam dunk?  do they not realize they will be treating SICK PEOPLE??!!?!??  It boggles my mind when egos get in the way of good medical care.  It's pathetic.  And a disgrace to "fire" a patient just in case that patient "might" make you "look bad".  Do they think causing stress is helpful to their patient?  All I see......is the true glimpse of their character.

CupCake?  Your PCP didn't like your hub calling her out on bad behavior.  How dare he!!!    Her ego got bruised.....and she dumped you.  Nice.

Today.......I have developed a lovely case of thrush.  My mouth is on fire.....and face is swollen & painful.  going to head to the oral surgeon's office. Great....just great.  will lose a few pounds before this is over.  woo!

Taffy?  I can't leave you guys lol.  I'm just really cranky at the mo'.  and the nonsense for the last 2 weeks here.....got to me.  people are @ssholes sometimes.  Every now & then I'm an @sshole too.......difference is.....I recognize it in myself!!  The fly-by posters & "experts on nothing" p!ss me off.

(what a touching post eh?)

lol



Robinj

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 #44 
Well said Bun!smiley: Bclap - keystrokes: :clap
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Cakelady

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 #45 
My PCP was a women and she never wore a whotenlab coat always an expensive outfit with heels. She always had her nails and hair done she was a pre-Madonna . When she got married that's when things really went down hill. He was some big shot singer in her country oh well.

I have had one bad rhemy and that was my first rhemy and the only rhemy in our area. When I had had enough of him my PCP the one that dumped me prescribed all my meds when I got worse we did petitioned my insurance company to go to Stanford University Stanford for years until another rheumatologist moved into my area and that's that my current rheumatologist But another one has also moved in and I have seen him when she was out of the country. She doesn't have any issue with if not knowing something. If she doesn't know something she will call my old rhemy at Stanford who is also a research and does research for Lupus. But she is human and one time forgot to read my CT results for I think 3 months which is when I took my second turn for the worse. Robin and a few others will remember. Not sure what I would have done without Robin, wornwolfiegirl, and Beth. Beth is no longer on the forum she's very very busy and when she's not at work she's sleeping man I miss those times

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