Hello, newbie here :)

Hi all, new to the forum and a lupus diagnosis. I've been lurking for a bit and decided to register because everyone seems so supportive and helpful. :)

My rheumy has decided to make a pincushion of me before prescribing anything other than celebrex so I've been having a rough go. I've been in a flare since the end of august.

I have 8 of the 11 markers, ana 140, raynauds, cold urticaria, pleurisy, asthma, liver inflammation, bursitis, arthritis, endometriosis, rashes on top of rashes and that's the short list. I go back to the lupus clinic to see my rheumy on Feb 6th and hopefully we can get this show on the road!

I chose the name acquiesce because I have reluctantly accepted all this as much as I can at the moment. You can call me acq for short if ya like.

Anyone else here allergic to cold temperatures - cold urticaria?

Hello Acq:

Welcome to the forum, sorry that you need to be here though. It's a real bummer when you have and illness that people really can't see. We always get "Oh but you don't Look sick".

I have raynauds too, as well as RA, and Fibro. I have a bunch of other stuff too, I truly believe if my Dr's weren't so late in treating my symptoms I'd be much healthier.

Have you been to see a Rheumy yet? If not when do you get to see one? I hope that you get into see the Rheumy ASAP. Wishing you the best, and please keep us posted.

Hugs,
Barbara

Hi Barbara and thank you for the welcome :) I read about all that you have been through lately and I'm glad you are home and hope you are recovering more each day. *hugs*

I feel like I look horribly sick lol. My face has blisters, I waddle like a duck, have these nasty bags and dark circles under my eyes and pale as a ghost from the anemia. But you're right, not everyone sees what we see looking at ourselves. I suppose I don't look as sick as I feel.

I started having symptoms in my teens and was just diagnosed at 38 so I can understand that frustration. The last four years have been significantly bad and I have gone through a few doctors in trying to solve this mystery. I'm from Canada and not sure where you are from but our healthcare system is usually quite slowwwwww!

I saw my rheumy at the end of December and go again on Feb 6th. Apparently she's involved with a lupus clinic and wants to see me there where they have access to more testing etc and can turn me into a human guinea pig/pincushion lol. In that regard our healthcare is good when it is urgent. Normally the wait time for a rheumatologist in Ontario is upwards of 9 months for non urgent cases. She seems good, this rheumy. I just wish she would have started me on something now to halt the damage. I find it scary waiting while my body continues to basically beat itself up!

I hope you are having a good day :)