Hey its Edio... and I was to my Lupus Doc

[Edio]

Hi there everyone.... I really want to say hey and thanks... for your kind words... Well I am not sure where to begin accept, at the beginning of my horrible day on Thursday...
I wrote out all meds as a reminder to my lovely Doc at Lupus Clinic.. I have been desperate as i mentioned in previous post... am I crazy or what, well thanks to you lovely people and your kind words of compassion, I am not sure how i would of made it thru this past Thursday without them
I went to the Clinic for appointment, I was prepared to tell my doc everything i had been feeling.. I have had probs with my INR lately fluctuating all over the place... he would not even listen.. he blew me off like anything can throw your INR out of wack.. Ok this Doctor i believe has major issues... I wanted some help.. I was to see him in January 2007, and complained of my probs, depression, anxiety concentration.. he ran the standard blood work.. and that was it... Well this last Thursday i became a little abrupt at how I was feeling, and he became so defensive... I tried to explain my joint pain, that mostly runs down one side, he basicly told me I was too obese.. Ok I am struggling with my weight but I was 400lbs plus before and now I am around 240lbs, it took many years but I am comfortable with my size and I am always looking to improve my health thru weight loss. Well i mentioned to him He is my Lupus Doc is he not the one that i am suppose to let know how I am feeling... he told me that my problems were not related to the SLE... and suggested mabe seeing a psychaitrist (spelling) ok.. mabe... but this doc will not even listen to me at all.. I had my Mom and Husband with me and I was not rude or sarcastic... I just wanted some help... I have read many posts regarding meds I have never even come close to being on anything specific, except steroids for pnemonia. I am venting... but tell me anyone... I can and will ask to see another Lupus doc... this man I have been seeing since I was 24 and now I am almost 40.... I am just scared because he is suppose to be so good... and if i ever need surgery I have to go to the hospital he works out of or mabe I don't... I am not someone whom is hard to get along with.. and his reaction to me was horrible and in my opinion was very unprofessional.. I did get stern with him and told him how i use to work 40 hours aweek and gradually less and less... he sees no connection with having Lupus and my lack of energy... and desire to work... my feet swell, I get dizzy, i can not concentrate at times and joint pain and headaches... I have had leg ulcers a TIA, chronic High blood pressure.. pleurcy you name it.. inflammation everywhere.. but how I am feeling has nothing to do with Lupus... because blood work looks good... Help please tell me... some of you have had horrible experiences with Doc.... and he is the one that has to fill out my application for Canada Pension Disability... so concerned... thank you for letting me vent... Looking forward to hearing from you guys...
Edio

[Maia]

If at all possible try to find another doctor. One that realizes that bloodwork is not the be-all and end-all of how a lupus patient is doing. One that listens to his/her patients.

My GP and rheumy also both fell into the camp that if no swelling evident in joints, and normal sed rate, then lupus is "not active". Don't tell me that when I have fevers constantly, aching joints, massive fatigue, rashes on my arms, etc. etc. etc.

[jude mack]

Hi Edio

I feel for you, I have been through this with one rheumy, I think you need a new rheumy, does your GP agree with this rheumy or has he/she a different opinion. When you have your CPP filled out, your GP has to fill it out and any other doctors you have seen, you have to fill one out as well.

Also before making a final decision, a pannel of doctors from CPP read all your medical files. I got my CPP with just my GP filling out the forms. Good luck to you in getting your disability. Let us know how it goes.

Hugs Jude:)

[florie]

Hi Edio,
I feel so bad that you went through that kind of visit. I think you deserve a more compasionate doctor. He sounds cold and unsympathic to your illness. I wonder if he is just frustrated cause he can't make the diagnois he needs for you. Refering you to physciatrist might help with the other issues you have , but he should realize that you wouldn't need that kind of doctor if he could help you himself.
Going to mental heath is okay. They will understand all that your saying and feeling. I go to mental health every three months with all my anxiety and depression and my Lupus. My physciatrist is very understanding and has helped me with medicines for all my issues due to lupus. It couldnt hurt you but maybe help you. And that would be proof to your regular gp. just to prove to him that your not carzy. You need a good referral . I hope this has helped you and please let us know what your next plan is... hugs and smiles.
Florie

[LolaLola]

Dear Edio,
You deserve better help not this nonsense. Well Done on the weight loss too!
This Doc. may have a good reputation but he is no good for you.
x Lola

[helloos]

I would definitely get rid of this doc and move onto to another one.

If his actual knowledge of Lupus was as good as his reputation, he would paying lots more attention to your symptoms than you blood work.

That is just horrible that he did not listen to you.

Keep your chin up and do try to get another rhemo.

In the meantime - I agree to check with your gp about these symptoms and maybe help you get them under control.

[LaraBara]

Hi Edio. Just wondering where you are located? I'm in Ottawa and there are some super Lupus / Rheumy's here....

I see you're in Ontario, but...where?

Also, I agree with Florie - I certainly have trouble dealing with all the emotions that come with trying to be an active person, wife, mother, worker etc. and cope with a chronic illness. I would love to have a shrink or therapist to talk to who understands chronic pain and the other feelings that come along with it (read: guilt!). Regardless of what "mean" doctor says, it can't hurt to talk to someone - especially since in Ontario if your GP makes a referral to a pyschiatrist (not a pyschologiest) it's covered under OHIP.

While your doc shouldn't treat you that way, many of them do and it can be very frustrating and patronizing. Sometimes, finding a new doc in your town isn't easy - especially if you are rural. Maybe some of us can help with references in your area?

I know it's tough, but stick with it! I can't count the number of times I just couldn't be hassled with yet another rude doctor making me feel like a whacko and just didn't pursue it. Hindsight being 20/20...find a new doc and don't ignore your symptoms for fear of having to go through this again.

Lara

[Edio]

Hi thanks for all the replys....
I am going to go and see a nice therapist... in June.. It may help i agree it can not hurt.. I feel mabe it might be good to get some feelings out.. Also I have been booked for a bone scan, I have never had one so I will keep you posted. I am also going to see family doc on Saturday morning, INR is all over the place. I am also going to ask about another Lupus Doc.. I am located just outside of Toronto.. any suggestions of a good Doc would be appreciated...
Take care everyone and thanks for listening...
edio

[florie]

Hi Edio ! :)
So glad to hear from you. You sound more positive. I am glad you decided to talk with a professional and you are right,it will help .
Let us know how it all goes with everything you have scheduled. Good to know that your taking care of yourself. I hope you find a wonderful rhuemy that is more understanding.
Florie :wink2: