Life With Lupus

Haven't posted in a few years

Hello everyone,
I was diagnosed June 1, 2012. I’ve been in and out of remission several times. I’m not taking any meds for Lupus currently, only meloxicam for pain. My rheumatologist left the practice, and I saw someone else in the practice and she wanted to start all over, said I didn’t have lupus etc.

I’m not going through this all over again, it was upsetting enough the first time, I’m not doing it again. We have to fight to prove we’re sick, and then fight to prove we’re still sick?

Just my rant.

Nice to be back again.

1 Like

Hey Trisha
Although not Lupus related I had a very similar experience with drs not accepting another’s diagnosis. Now admittedly whilst trying to obtain a firm diagnosis over the years I was put through all sorts of test, trialled on numerous medications and had 5 differing pseudo diagnosis. Each dr had their own opinion and fully discredited any other dr’s opinions, it was like I was on a merry-go-round. Meds of every colour and creed (with side effects to match). I was a damn mess and that had nothing to do with my actual condition, but more to do with these ‘medical professionals’ who wouldn’t listen and were more interested in their own ego driven agendas.

OK that’s my rant over

But believe me when I say you most certainly are not the only one with a rare condition to be put through that mill and unfortunately you won’t be the last. I am now in receipt of a disability payment and am soon expecting a review of my qualification for this payment. So again I’ll have to prove that I’m still unwell.

I do not mean to be condescending here, not at all, but it is nice to know I’m not the only one having to prove an already known diagnosis. I do have some real nice four letter words for the government department involved, but then that would be inappropriate, a bit like their review really, inappropriate.

OK, so NOW, that’s my rant over LOL

Merl from the Moderator Support Team

Hi Meryl, thanks for sharing. Nice to know we’re not alone and that’s what this group is all about.

I have been receiving treatment for Lupus and Sjogren’s since 1
2014. My Rheumatology treatment is through a med school program, and every couple of years I get a new doctor who wants to run all the tests over and mess with my medication. I finally began to fight back by learning to interpret my labs myself and telling the doctors what I am and am not willing to do with my medication. It really sucks to have to be your own medical advocate when you are not feeling well, but it works out better in the end.

Keep up the good fight!