Same ole' song and dance

Hi All,

For the last week or so I have been experiencing joint pain, head ache and sick to my stomach. It doesn't matter what I eat it comes right back up. I am really worn out. I went to a follow up appointment with my pcp, he didn't seem to care at all. It's almost as though he doesn't listen to what I have to say lately. My rhuemy is 3 hours away, so I can't jump in the car and go see him anytime I want. It is getting impossible for me to work.

I had to have my pcp fill out some papers from when I was in the hospital, my company requires me to file short term disability anytime I am out more than 5 days. He literally put on there that I have no limitations and can do anything required and am able to work under stress on a 40 hour a week plus job! Thank goodness I picked up the paperwork and it did not get faxed into my insurance company, I faxed it back to my pcp with a letter reminding him of my condition and said I didn't know if he didn't listen to me or simply didn't believe me and that I needed him to review the papers again. Now, I can't get him to call me and I really need the papers filled out and sent in! What do I do? I told him it was important he filled them out correctly because this information goes on my permanent record. What do you all think? Should I have sent the information he filled out even though it was incorrect or sent it back to him as I did? My husband says I should contact the lead physican at the clinic and report him. What are your thoughts?

Melissa

Hi Melissa,

I totally agree w/ your action of sending him the forms back and asking him to re-do them.It does not make sense to me that he filled them out the way he did, knowing your condition.But I would give him the "benefit of the doubt" and see if he is willing to re-do them.That being said though, if he doesn't return your call soon, I agree w/ your husband and you may need to go above him.I do hope that you hear from him soon and he changes them....
I know how hard all of this is for you and not being up to working, etc.It is so difficult to accept our limitations sometimes...that I do know.Just try to stay calm and know you will get to feeling better, but it will take time my friend.I am so sorry you are going through all of this...I will be thinking of you and sending you my good thoughts and concern.Take care and please keep us posted.
Warmly, Barbara

Hi Melissa,

I am sorry to hear you are having such a bad time and I wouldn't be surprised if the added stress is making it worse. Is there any way you can see another doc? I noticed you mentioned "lately" he has not been listening to you, so I'm assuming it has been more than once. That is just not acceptable to me.

It also sounds like he is not even taking the time to fill out your paperwork properly, which I don't understand. I know when I was looking for a rheumy, one of the first 5 questions was are you applying for disability. I said yes and the girl told me that they could not accept me as a patient because the doctor does not like to fill out disability papers!!! I also know a PCP who will not see auto accident patients because of all the litigation paper involved.

Can you speak with his receptionist/secretary and explain how you need to have the papers filled out and sent in asap? I would give him one more chance to either correct or clarify his remarks. If you are still not satisfied then I would contact the lead physician. Hope this helps some.

Hi Melissa,

What a horrible man!!!! Geez some Dr's make you cross, how dare he write that! Isn't he supposed to be looking after your health? Not adding to the stresses of it!

I would have done the same thing you did and sent the form straight back, I also agree with your husband I think you should report him to the head Physician! It is probably a good idea if you find yourself a new Dr too. Perhaps the Lead Physician will be able to intervene with the forms and speak to your pcp and find out what his problem is! Is it possible to send the forms to your Rheumy, would he/she fill them out?

What a terrible position he has put you in Melissa! Some Dr's just don't get it do they?

I think you need to do some yelling and stamping your feet to get their attention, obviously this is something that needs to be addressed ASAP and you need to let them know that!

I feel for you having to go through this, I will be thinking of you and I hope it gets resolved soon, you certainly don't need the extra stress! Please let us know how you get on.

Take care dear friend.
Love and Hugs
xxxMaz

Hi Melissa:

I'm so sorry to hear about this situation. I agree with the others that what you did was correct. I don't understand what these doctors think they are doing. I really can't add any more to what everyone else said except that I hope you feel better soon - try to stay calm and I will keep you in my prayers.

Well, my husband had an appointment with the same pcp yesterday, when he came home he had the papers I had requested the doctor refill out with him! He also told me the doctor told him he didn't think I had lupus! He said he told him I didn't fit the profile! Excuse me? He did refill out the papers as I requested, stating my limitations. I am totally baffled, this is the same doctor who referred me to my rheumy because he felt that my lupus was out of remission! I don't know if I ticked him off by faxing the letter to him or if he is simply just loosing it, either way I am done with him.

I am so hurt that he would tell my husband that. Trust me I have had several doctors tell me I have lupus, it is not something I want to have, and I have gone to several doctors in hopes that I would get a different second opinion. Now my husband is questioning the validity of my disease, because he says if I truly had it then the medicine I am on would be working and making me feel better!

Needless to say, feeling as bad as I have been this is the last thing I needed. I am mad at my doctor, mad at my husband. I don't know whether to scream or cry at this point.

Thanks for listen.

Melissa

Hi Melissa,

Is your doctor medicating himself?? That is so bizarre. There is no "profile". I'm glad at least he did fill out the paperwork for you so you don't have to worry about that right now. And, in my opinion, he shouldn't be discussing your health with your husband. He is breaking the HIPAA (privacy) regulations. Because of his action, your husband is now doubting your diagnosis. I am glad to hear you will no longer be seeing your doc. I think he is unethical and now has caused a rift in your marriage. He should not be allowed to get away with that but, more importantl,y, you do what is best for you. Forgive me for saying, but it sounds like your husband may need some education about lupus. Please keep us updated.

Hi Melissa,

I'm so sorry you are going through this! I agree with what Chris said re: privacy issues! Whether he is your spouse or not the Dr had no right discussing you with him, now he has caused you more problems!

I have had similar issues with my old GP you see I changed GP's at the beginning of this year because I could never get into my old one whenever I needed to see her it would be a 3 month wait! I needed better health care than that! My Mum also sees my old GP and at one of her appts. my old Dr told my Mum that I didn't have Lupus as bad as I said, in other words I "pretended" about alot of my symptoms! My Mum knows this is not true and told her so, when Mum told me I was like "Hello all of my bloodwork tells the story, I don't need to pretend!!!" I was really angry and upset and I spoke to my current GP (who is a wonderful man btw) and he told me she had no right to make any sort of comment about my health, he also reported it to the head Dr at the clinic, well needless to say, she (my old Dr) no longer acknowledges me and I know longer acknowledge her! None of us "want" to have Lupus, if only they could walk a day in our shoes, then they would know why we dont "want" it!

You are making the right decision in changing Dr's, I would also be reporting him to the Head Dr at your clinic! If your husband is questioning your dx it might be a good idea if he comes to your next Rheumy appt. so that your Rheumy can clarify everything!

I know it's easier said than done but try not to get to stressed by all of this, if you need to vent, do it here, we care and we will listen because we know what it is like.

Take Care
Love and Hugs
xxxMaz

Hello Melissa
I agree with Maz and Chis ,find a new dr and don;t give up and keep fighting.
Take care of yourself
Ray

Melissa, I don't believe doctors should be able to get away with "bad behavior" to their patients. I think I would report your doctor. Maybe, this would start sending signals to these health professionals who are so uncaring and giving out incorrect information (and giving out information that shouldn't be given out). I'm sorry you have to deal with this right now.

As for your husband, has he done any research on your illness or read the book by Dr. Daniel Wallace?. It may give him a new perspective on the whole situation. As they say, "knowledge is power". My husband started researching my disease when I was first diagnosed - he was looking up info on the internet and he did read the book. He knew more about it than I did at first. Perhaps, you could coax him into doing so, if he hasn't already done that.

Good luck to you my friend. Don't let the stress make you feel worse.

I agree with you all, I am still going to go ahead and report my GP's actions to the head doctor of the clinic, who actually used to be my doctor. I began going to this new guy because my old GP gave up practice to become the clinic's administrator, so he knows my history very well. We still speak if we see one another in public.

I printed out a bunch of literature and made my husband read it. I told him "trust me, I do not want to have the god forsaken disease but these are the cards I was dealt, so deal with it." I also told him he has seen me at my very worse and should know better than anyone there is no way I could make this stuff up. He has been more compassionate the last day or so. I told him I am very hurt that he didn't stand up for me in that appointment.

Anyway, life goes on, right?

Hi Melissa:

Sounds like you have a great relationship with the doctor in charge. I'm glad you are going to report your doctor to him. At least it may spare someone else needless upset.

I hope your husband is empathizing with you more now, too. I know it hurts that he didn't defend you to your doctor but sometimes men can be "dumb". I'm sure he loves you very much and will turn his opinion around soon if he hasn't already.

Take care and feel better.