No one seems to understand....

HI!

Just checking in on you. How are you doing? Please give us an update when you have a minute.

Gary

DON'T GIVE UP! Get a new doctor! There are doctors out there with compassion for what you are going through. I was diagnosed with Sle about 6.5 years ago but I am sure I have had it for longer. I started getting rashes when my 18 year old son was 2. I went through many doctors and many heartaches, times when I thought I was truly crazy but Having this amongst other health issues made me want to fight for an answer. No matter what I was going to find out what else was wrong with me. Stay strong and know that others are going through this with you. I believe I am right where I should be…on this site! I am alwas willing to talk and listen. Hope things get better for you!

May God bless you and keep you in his care.

Yes you are at the right place..I really would like to get to know you better…If we are not friends, I would like to be and follow you as well. Well here on Lupus connect, not like a stoker…it just sounded funny..haha talk soon Teri

Many of us have gone though very similar things. So many Drs. that don't treat patients with compassion. I was dismissed many times. Misdiagnosed, etc.
All 3 of my boys have medical issues and they too have had bad doctors.
If you haven't seen this movie, you should:
"The Doctor", with William Hurt. It's about a big time Dr. who think he's too important for his patients or his own family until he gets cancer, then he changes everything about how he practices medicine and teaches. It's a true story.
Hope your feeling more supported today and that your not alone in this journey.
Blessings,
Mamie

Yes great movie, I think I am going to look it up on my movie on demand, on my directV(cable) to see if i can watch again, as it was a long time ago…every doc show have to watch this in their training thanks…Teri

I really appreciate everyone taking notice to my discussion and seeing how many replies i have gotten i realize the out pour of concern. It brings such joy to my heart to know there are people out here that truly cares. I plan on finding another Dr, one that is more focused on my health and not on what insurance I have or my employment status. Since i have became a member on Lupus Connect i have heard some unbelievable stories and the insight i have gathered is amazing. I really have learned alot about lupus and the affect it have on your life. Thanks Everyone.

Keep on commenting and posting, we will learn from you and you may learn from us. But I know we all can be friends, supportive friends, that we often do not find in our own lives.

It is hard enough to be a women a mother and wife, but when you put Lupus and secondary conditions on top of it all, it becomes crazy…

But here on connect we can vent and say anything and someone will connect with what we have to say, and that a lone can change our lives…

So keep on sharing and we will be here…thanks so much…Teri

HI!

I see that you have already received some great advice and support, but wanted to add a few words of my own. I am sad to hear that you went through this. There are some great doctors out there and there are some who just aren't very caring. I often hear this from individuals with chronic conditions. You are dealing with a lot of challenges, and you deserve better. I don't know what your options are but is it time to consider a new doctor?

As you can see, you have friends here who really care about you. I hope that you will stay in touch! Keep us posted on how you're doing.

Gary

Thanks it good to know there are people that is out here that understands and cares. Words cant express how much joy it brings to my heart to get the responses I have gotten.

Hi, I am so glad to hear this. I know that you are suffering. We are right here with you. Please stay in touch!

Unfortunately, your experience isn't an isolated event. This happens far more than it should. Doctors sometimes forget that listening is an essential tool when treating a patient. I recently made a visit to the ER for chest pain where I was treated with great disregard. This doctor wouldn't even let me get a word in and proceeded to make insinuations which could not have been further from the truth. The sad part is… I am a Registered Nurse and believe- you- me, it affords me no greater advantage than the next person. I have since decided, what harm will it do to call someone out on their blatant lack of good listening skills… not to be rude to anyone but just tactfully make them aware. And being on medicaid should not make any difference nor should being unable to work! Unfortunately, people are judged by some practicing health care professionals but the great news is… someone out there will offer you compassionate care just stay persistent and seek another opinion. Don't throw in the towel become your own advocate. Make lists of questions/concerns and a good history. Take your old medical records if you have them. Oh by the way, I don't work and I have NO health insurance so I can speak from personal experience… don't give up my friend!

I actually called a Dr. out on his alarming lack of bedside manner many many years ago. I had been very sick for at least a week with a minimum fever of 103 and it almost looked like I had mumps or something (ID been re vaccinated about 10yrs prior) not to mention Id lost 25lbs in a week. My blood work was completely screwey to say the least. When I went into this docs office and met him for the first time during this sickness and when he treated me so coldly (I too am a retired RN), I couldn't let it go. I was surprised too because he was a D.O. and they are usually a LOT more empathetic. Once I called him on how he was treating me, we ended up having a wonderful Dr. patient relationship!

As for Docs in the ER… they tend to be very stressed out and because they don't really form a relationship with the patient the way a GP does, they tend to act and be a lot cooler. I know because as a patient now and before I retired, I had to deal with this issue quite a lot. Does that make it right? No, of course not but it happens sadly enough. Sadder still are the doctors who shouldn't be doctors and Ive had my share of those too! Grrrrrrrrr!

raven, you made a great point that I had not even considered about ER docs not being able to form a Dr/patient relationship… thank you. I love lupus connect because you read other's experiences and it makes you realize that we all share so many similarities.

I am going thour allmost the same thing right now an i fill so sad about it doctors think thay no ever thing but if you not going thour it how can thay understand an thay do need to let us as pations talk more about what going on with us…

I agree. There exist a bias in our healthcare system against women . This I have seen in my RN practice as well. Physcians , still minimize women's complaints. They
minimize them and think are issuses are all in are head. We are treated with meds that complicate the diagnostic procedure, and do more harm in some cases than
good.

I am so sorry that you have had such a bad experience with doctors and your diagnosis. I always say that it is best to take your health into your own hands, because even though many doctors know a lot, they may not know a lot about what is right for you.

Please don't throw in the towel. cslush 68 has some good suggestions. Never stop sticking up for yourself. You are right - every case is different even though we share similarities in our symptoms. YOU ARE NOT LAZY. Whoever said that is an idiot. Sorry, but that is just SO rude. I hope that you find a very nice & of course competent health care provider. Well wishes to you :)

Thanks for the advice

Anonymous, i think it is time for you to have a name… some thing like "Lupus??2012" you have Lupus and questions like the rest of us, and you joined this year 2012, just a thought..

I see you as a wonderful person and your not anonymous, you are who you are, so make a a great name for us to call you, by only if you'd like…

I have had many problems with doctors, I know now, if the doctor doesn't work I change doctors, I also tell them how I feel about their approach, & often they change for the better, but if not move on…

I also know we have to do a lot of work ourselves. be our own advocates, or I wouldn't of gotten any where.

I hope I didn't offended you about your name, I just would like you to have one, you deserve one..so think of a good one for us to call you as I hope you will be with us for a long time..

You can always message me and talk about anything. i am 52 and I have been ill sense I was a young child. Look on my profile, Oh we may need to be friends, if so, after you click on my photo, on the left side it will say connect I think and then click friend or follow me and you can read about me and i can you…

I hope to become friends and talk soon..Teri

Well said ;)