Looney Lupie Lady

Welcome! Today I had the honor and pleasure of being highlighted on “On the Road to a Cure” blog. This is the blog of The Lupus Foundation of America.

If you will remember I became an advocate with them a few months ago. You can stop in at their site and sign up yourself. Fight where you are for better visibility, better treatments, and a CURE. No one should have to suffer and die from lupus. I fight for myself as well as my children, and yours!

While on that note I need to share something that has me sad and anxious. Two of my lovely daughters will be tested for ANA levels and other autoimmune markers next week. I pray and I would ask if you could join me in prayer. That these tests would come back normal! Lord please protect my little ones. Thank you for your support and friendship. God bless friends.

I am fed up with the run around. Back in October I found out I had Lupus and a handful of other autoimmune nasties. In early November I found out that I may have major thyroid problems. At each appointment and each phone call every dr was serious and urged me to get the testing and follow ups ASAP.

Now I have had all their tests. The results were not what they expected but not fine. The results were gray at best. Now when I am supposed to be having return visits I am getting the run around.

“well the dr thinks you can wait until mid June”
Not the last time I talked to the dr. Nurses would do well to get second jobs with the Mafia no one would be late on a payment!

“Your tests were basically fine, but you do need another ultrasound and biopsy.”
First cancer tests that are BASICALLY fine scare me. Would they like to have a basically fine cancer test?! The other thing that gets me is if I am so fine then why do I need a biopsy and ultrasound again?

The medical maze just keeps getting more convoluted. I hope that I am able to settle some of these issues with the drs when I see them. That is when? I see them. I’ll keep you updated friends! Take care and God bless!

Yeah! The people are heard and Starbucks has responded. Starbucks is adding an Orange Valencia Cake to the line in early May. Check out Starbucks blog for the specifics.

I had heard that many business gurus were touting the demise of Starbucks. With responsiveness like this I will give them my business. Keep it up Starbucks and thanks for a Celiac trying to stay healthy!

Well I sit here singing the Raynaud’s blues.

My toes are cold duh duh de duh
My nose it too
My finger’s ache…and they’re turning blue

I got the Raynaud’s bluessss

I waiting for chillblains duh duh de duh
Lookin’ for my wool socks
Infection’s coming…and I’ll need some salve

I got the Raynaud’s bluesss

Umm sing it friends..

hahahaha No really I am wrapped in a blanket and my toes are cold. At least they are no longer blue. That is just freaky! I have noticed though that this season my nose has joined in the coldness. It started with just my fingers. As the years passed my toes got involved and now my nose. Do any of you have this? What is your best tip at preventing problems? I don’t want some infection because of poor circulation.

Have a great day! God bless!

Last night after a very long couple of weeks and way too much sunshine this past weekend. I took my normal shower. Surprise! My hair began falling out afterwards. Not just a bit but my hand was covered when I ran it through my dwindling hair line. My meds are just not stopping the lupus.

Hair loss was one of my first symptoms that screamed something wrong. It was also one of the first symptoms that was dismissed by my dr’s as a “beauty problem: not a health problem.

So what are your favorite symptoms? Would it be the chronic fatigue? Reynaud’s or chillblains? What about brain fog or can’t you remember? haha

For me it is important to maintain a sense of humor. If I sink into the pain and physical issues that are always gnawing at me. I feel that I would not be able to do what God needs me as a member of His flock to do. So I guess a better question would be what is your favorite thing to overcome your symptoms?

Take care my friends and God bless!

PS I have threatened my kids that I am going to get a bright pink wig if this keeps up