Am I the only one?

Welcome to the forum Drive!!! You've found a really supportive group of Lupans!! YES! Lots of us have huge issues with doctor visits. I always spend sufficient time prior to doctor visits to write out a very specific sheet of info to hand to the doctor. There is a post about it in "Lupus Resources" (link at the bottom of my signature). It is very helpful with some doctors. Even if your doc isn't one of them, it really gets you ready for your appointment. But really, if I write my questions out and hand him/her a copy of the list, I don't lose my nerve and end up sitting there nodding and going blank. We really need to make the most out of our short visits. I hope you get lots of responses to your question. Blessings!

I currently dont have have PCP/Rheumy because I was so diffcult for the last one. I would refuse to go to appointments because all we did was fight about my prednisone and his view on my life. So right now I just see the specialist who I asked for referals too and its the same thing every visit with them.

I love my rhuemy but right now I am so frustrated with her that I am haveing imagineary conversations with her in which I tell her off. She keeps telling me the side effects of my medication can't possibly be from the medication even though they are well documented effects of that drug.
Sj

Hi Drive,

 

I'm another one with great doctors as of right now, but I have been through 3 rheumies since 2000.  I had issues like yours, so I fired them. 

 

You have to get very knowledgeable about your lupus.  To the point where you can communicate with your doctors on their level.  If you come to your visits with confidence, knowledge and a purpose, you'll likely get more out of your visits.  That has been my experience anyway.  Whenever I've had extended or quick ER visits, I have been able to talk with the doctors like a doctor!!  It has blown my family away hearing me behind the curtains.  I get very fast attention and no BS.  It takes time to learn everything about lupus (I don't think we'll ever know it all!!) in order to communicate this way, but it does work.  If you can talk and understand like a doctor, you'll get more respect.  It's a horrible truth. 

 

Go in to your appointments with the attitude of "I'm telling you what is up and what I want and need.  I'm not asking you."  This is your body, not theirs.  More respect is needed for sure.  I"m sorry you're having so much trouble.

 

Ginny

 

 

Hi drive--
I went through that for 13 years with obvious physical symptoms. There was absolutely NO excuse for the lack of treatment I received, the dismissals, the insulting comments that I was imagining things or it was all in my mind. I actually just gave up, and it had disasterous results. I have permanent damage now and disfigurement that I can never correct now. I had great insurance, and it made no difference. I've goten better care on medicare.

I would definitely not give up and find a good rheumie in your area. If you feel you are sick, you probably are, and with a little education, you probably know what is wrong, because you feel it. You need to find a doctor that will do proper and sensitive testing, treat you based on symptoms, and be caring enough to appreciate your feelings and desires about how you want to live your life. I'm in terrible chronic pain and often have to argue for meds even though I have had two neck surgeries that they know caused problems and pain and other untreated problems. I just tell them flat out that I cant live with it, that I want to have a life, at least for a while, and I want to be out of pain. If your doctors don't respond, then you need new ones. You also need to communicate that you don't like having to beg for medication that you need to be comfortable and live. That it is unfair. They will likely argue that they are trying to help you and explain why they may sometimes say no, and you have to be open to that. Everyone deserves liberal vacations from pain and symptoms and while being pain free may result in addiction, which is undesireable and may cause more problems down the road, there are many meds that are non addicting, and you can do a two week or month on, two weeks off, type thing with pain meds. Sometimes addiction is unavoidable, but even on fentanyl, I quit it, it was uncomfortable, but neither dangerous for me nor something I couldn't deal with on my own. Another option would have been to go into a hospital for a short stay to have them wean me off more comfortably and under medical supervision.

I hope you fight to get what you need. You are right, you deserve to have some dignity, to not have to fight to get the medicine you need, get full explanations of new meds and why they are prescribing them, and to have your condition explained to you in detail. I'm sure you can find better docs. Just remember that just because a doctor is famous or works at a big medical center, or is top in his field, does not mean he or she is the right doctor for you. My best docs have been in private practice outside the politics of a large medical center, though large medical centers like Mayo can be fantastic too, my regular care will come from my local rheumie in his little modest office. He himself has an autoimmune condition, so he understands. Older docs can be good too because they have usualy been sick before, sometimes women doctors are good for women, other times awful. It all just depends. But use your second and third and fourth opinions to find another doctor. I went to four endos and am on my fifth.

I wish the best for you.
Marji