Tuesday, May 11, 2010

Lupus and Fibromyalgia Awareness

photo by my friend Scott Vahey

(the lupus symbol is the butterfly)

I'm still so used to Lupus Awareness Month being in October, when my birthday is.  Now it is in May.  My sister, who has lupus also, was born in May. But I don't intend to pass the torch!  Her disease is milder than mine and I want it to stay that way!

I wanted to do a comprehensive post on lupus, and I still might.  But World Lupus Day is May 10 of every year, and today is May 11, so I missed that deadline.  Guess what got in the way of me being on time?  Lupus!  and, probably, some painful fibromyalgia as well.

I'm doing great according to my blood work.  Just like my pre-diagnosis state, although the ANA test wasn't available then.  Come to think of it, I don't have my ANA test results yet.  Better ask for them.  Note to self.

Anyway, blood tests aside, I've been having some nasty joint pains, some I-just-hit-a-wall-and-that's-all-I-can-get-done-today fatigue, some I-just-got-out-of-bed-today-and-now-I'm-going-back-in-it fatigue,  and joint pain, pain on breathing, bad headache, etc.  I've also got hot flashes and night sweats which I assume are gifts from surgical menopause.  At least when you have a total hysterectomy for cancer you don't go around saying "Should I have had the hysterectomy? Was it a mistake?"  No mistake here.

I am going to take a shower and have some tea with actual caffeine in it, and shake my wet hair a few times like a dog, to get myself into a more alert state so I can lead tonight's local monthly support group meeting for lupus and rheumatic diseases.  So I'm just going to cheat and post some links here instead of writing something useful about autoimmune/rheumatic diseases...at least for right now.

I'm trying to teach myself that excellent is not always necessary; "just ok" can be ok :)  At least when you are sick for a good portion of your time, just ok had better be ok!  Tell them that's all they are going to get because you are sick, and tired!  So there! :)

(this assertive moment brought to you by...prednisone? Heh.  Inside joke.)


World Lupus Day

Fibromyalgia Awareness Day

Fibromyalgia, Mayo Clinic

Lupus Awareness Month Flyer (hey at least I did a flyer!)

Lupus Awareness Month, Lupus Foundation of Northern California  (they sponsor my support group)

Lupus Awareness Month, Lupus Foundation of America

Lupus Awareness Month, Cure4Lupus.org

About Lupus, LupusLA

Beep's Lupus Links

Beep's Autoimmune Room (under construction)

But You Don't Look Sick Dot Com

Lupus Support Group, Physician-Mediated

Fibromyalgia Support Group, Physician-Mediated

more later...!


  1. One of the best ways to find a doctor who specializes in diagnosing and treating fibromyalgia is to join a fibromyalgia support group. However, finding a doctor isn't the only reason to join a support group; meeting and sharing your feelings, opinions, and knowledge with others who suffer the same, are also excellent reasons.

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About Me

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I've travelled the distance from an Ivy League college to decades of enforced poverty--because I've needed to qualify for government health care in the U.S., since being diagnosed with lupus at the age of 23. I have a personal blog at http://beepbeep.livejournal.com that I've had so long I'm probably stuck with :) My other blogs are here on blogger...