Hello, newbie here :)

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acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 1/18/2014 10:38 PM (GMT -6)   
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?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/19/2014 12:39 AM (GMT -6)   
Welcome to the club! Sorry you have to be here. :-(
I don't have a cold allergy but I do have raynaud's.
Get used to the regular blood works. I jokenly call my nurse the vampire. I have blood drawn about six times a year.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 1/19/2014 6:15 AM (GMT -6)   
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
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 1/19/2014 8:21 AM (GMT -6)   
Thanks Couchtater :) They are vampires! When I had it drawn in December it was vial after vial and I asked the nurse if she was going to leave me any lol. I hope you are doing alright, I'm sorry we have to be here too. The nice thing is that we have people to talk to that actually understand the depth of this illness. I'm very grateful to have found you all here :)

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 1/19/2014 8:46 AM (GMT -6)   
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 :)
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