Today’s 3 month follow-up visit with the Rheumatologist turned out to be eventful for once, thanks to the presence of a Student Doctor. Finally got the actual Doctor to somewhat listen and pay attention to the Lupus part of my diagnosis, question stuff and actually look at my medical history (which in my opinion should have been done when he picked up my case initially!) Woot! THANK YOU STUDENT DOCTOR!
I do apologize to the other patients for bumping their appointments back by an hour and a half though. Sorry my bad..but sadly, it was the consequence of my Lupus part of the diagnosis being ignored for the past year or so. It is my right as a patient to be listened to. Also in my opinion, by not having it paid attention to, it causes some serious concern in the quality of care and quality of life. The Big Bad Wolf does not like to be ignored and neither do I.
We, the patients have to be our own best Advocates and do anything in our power to insure that our needs are being addressed and paid attention to.
Part of the reason for Student Doctors is so that they can learn on actual patients so when they are off on their own some day, they’ll know what to do. Well, lets just say I used the opportunity to have my say on what NOT to do too.
One of the basic things doctors need to realize is that they need to LISTEN to what their patients are telling them and not ignore or blow off what we were are saying. Listening is so important and helps build and strengthen the doctor-patient relationship. Otherwise, we stop discussing things with them if we feel our concerns are going on deaf ears. Why bother?
Basically, after my last visit in May, I was left to feel like I was on my own as far as anything “non-joint related” was concerned. As a patient, that makes me very angry because to me it comes across as “I dont matter”. I am telling him “This is what happened”..why cut me off when I am speaking..and why not pay attention to it?? This is valuable information in the treatment of MY care.
The appointment starts off with the Student Doctor coming in first, all by herself. She asks me a series of questions that I answered honestly and openly. I mentioned to her how last visit back in May, I was just coming off the worst flare I have had to date other than when I nearly died in 2007. I had told my Doctor at the time about it and how badly I was having memory issues, brain fog, etc and his response was “Sorry not Joint Related” and did not pay attention to a word I said. Just blew it off. WTF?!
This is when I mentioned how my previous Rheumatologist before my current one, diagnosed and treated me for Lupus as well as RA. And as you know, Lupus is SYSTEMIC, meaning it can effect any and all systems of the body, not just the joints.
I continued to tell her how current Rheumy appears to not pay attention to anything I mention unless it is RA related, as if that is all he seems to want to treat me for. He even went so far as to send a note to my house where the first line read ” Patient seems to think she has Lupus…”
Ummm hello what??!!! First off, I dont THINK I have Lupus, I was actually told that by the Rheumatologist who treated me before you. If you read my chart, you would know that. I am sure a copy of the letter he wrote me must be in my chart.
The Student Doctor eventually left the room and came back in with my Rheumatologist. We discussed a lot of what I mentioned to the student and argued a bit pertaining to the previous visit in May. He did his exam with the student present (making sure he was addressing a few of the issues I had mentioned that were ignored last time, which of course arent doing what they were then..now).
He paid attention to my inflammation on my left hand more today than last time too, considering it was present for both visits. He recommended that I should consider a Cortisone shot for it, even though it is not currently causing me pain at all. He is concerned that it will eventually damage the joint.
Rheumy then decides to take the Student Doctor, myself and Joe into his office and physically access the computer database of my medical history looking for WHERE or WHY my previous Rheumatologist would determine I had Lupus via the labwork. He did find where he ran various ANA tests and Lupus Panels but apparently they were all ok. I told him to the best of my knowledge I have never tested positive for ANA but I was under the impression that my diagnosis was based on meeting the criteria needed for the diagnosis.
Basically what is happening now is he has given the Student Doctor a research project to understand how, when and why I was previously diagnosed with Lupus. He still doesnt believe I have it and wants to either prove to himself via existing records that yes, I do have Lupus or to prove to me without doubt that no I do not have Lupus. Of course, he then made a comment to the Student that it is not uncommon for Doctors to have varying opinions that do not always come to the same conclusion.
He also ordered another Lupus Panel as well as ANA testing for my upcoming labwork for my next visit with him in 3 months. He commented to the Student that they should run these occasionally because “they can come back to bite you in the ass if they do not”..possibly making a dig at me for embarrassing him in front of a peer for not addressing this previously when I have been telling him this stuff all along. Too bad, Doctor. You should have listened to me from the get-go and none of this would have happened.
In addition to the labwork, I also was sent to Radiology to address the back pains I have also been complaining about. Apparently, according to him these cannot be due to RA so it has to be something else. They took about 10 films of my back in various positions as well as 1 film of my left hand to see what is going on there too.
All in all, as taxing as this doctor’s appointment was today, I am happy to FINALLY be getting the Lupus part of my diagnosis addressed once and for all. Its a shame that it took a Medical Student to do it, but I am happy she was there. Thank you Student Doctor. I am sure my Rheumatologist is probably none too happy with me at the moment, but at the same time, as a patient I have the right to be treated with respect and my complaints listened to and addressed. It is not fair to me to have a good chunk of my ailments ignored.
Not sure how things will end up, but time will tell.. perhaps my Rheumatologist will start listening to me more vs ignoring what I have to say. I know what is happening with my body. I am his best source of information and I need to be listened to.
Thank you to Patti Casciano for posting this song on her Facebook Wall today, it’s probably the perfect song to use xxooxx ❤