How Many Specialists Do YOU Juggle?

My LUPUS Presentation! Sign up at http://www.Brightbod.com or go straight HERE at 4pm PST Wed, May 24th! Link: https://zoom.us/j/8260195856

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A Win- Win – WIN! #LUPIES – YOUR ANA is VALUABLE!

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A Credible $ Opportunity for Lupus Patients!  No kidding!

I met Shannon Coates-Layne at Access Clinical / Access Biologicals over a year ago-and found we were uniquely connected. Why?

Through ‪#‎Autoimmune‬ Disease- & through ‪#‎LUPUS‬!

But not because Shannon has lupus. Because Shannon has an opportunity for patients with lupus.

One of the most important aspects of treating autoimmune disease is to catch it as soon as possible. And that means better TESTING for autoantibodies. Something Shannon knows alot about!

And it makes perfect sense! It makes sense that patients like you & me with autoimmune disease produce the very antibodies that companies like Access Biologicals NEED to make better tests! Our plasma is VALUABLE.

So here is a unique opportunity for us to help others. We can’t usually “give blood or plasma”-except for reasons like THIS, the ones Access uses. Shannon has explained the process to me in laymans terms-she is non-assuming and efficient. She can explain the process to you as well!

Through ‪#‎plasmaphoresis‬ we have a WIN-WIN-WIN situation! Access Biologicals pays us for testing and plasmaphoresis-and we get an fda approved treatment (plasmaphoresis) to help control our autoimmune symptoms! And Access Biologicals is one step closer to developing better autoimmune condition testing!

You can write Shannon here on this page if you are interested! I would do it in a heartbeat if I could! It’s really a neat opportunity-don’t let it pass you up!
Hugs, JJ

https://www.facebook.com/AccessClinical

Fantastic Little Snowflakes, Each and Every One

painshare

We are all as different as snowflakes-Tala has such a command of the “right words” to express what all us “chronics” feel. Managing life with any chronic disease is stressful enough-but before you decide what someone ELSE should do for their conditions, please READ THIS! You Go Tala!

Tala's Reflections

Just in case anyone thinks that Lupus patients have the market cornered on “stupid” or “crazy” things said to them about disease…. ya don’t!  The uneducated masses out there socialize with other people too, and they have ridiculous ideas for everyone if they have them at all.  We’re not special.

Here are some remarks I ran into on a popular page this morning that set me off:

I switched all my food to organic 4 years ago. Since, I have lost 100 pounds without exercise, I am off the cholesterol meds, off high blood meds, off allergy meds, my eczema and psoriasis have completely disappeared along with my sleep apnea. 

[My thought on this is that someone is lying.  You NEED to exercise, and unless you are a quadriplegic, you have no excuses.  It doesn’t matter whether that means just taking a walk, or raising your arms over your head a…

View original post 1,922 more words

The #NERVE of THIS NERVE; #Amputation Failed! Not giving up!

The #NERVE of THIS NERVE; #Amputation Failed! Not giving up!

Yesterday I saw my surgeon-the amputation was a fail. The darn median nerve continues to curse my days and sleep. It went five days nonstop. Doc gave me no less than EIGHT lidocaine shots yesterday to shut it down. By the time he was done I couldn’t feel any part of my right foot EXCEPT THE NERVE PAIN. I mean, it practically defies nature. The other possibility according to the million dollar nerve conduction equipment is that there are severely damaged small to medium fiber peripheral nerves in the skin that was used to close up the amputation. Anyway, THIS IS WAR (as my BIL used to say)

End of story is I’m going in for another surgery. I’ll let you know when it is. He’s cutting the median nerve in two new places and ripping out the skin used to cover up where the toe is amputated and stretching what’s left to use. He may have to graft later if it doesn’t take and I get a wound problem. Ah, another risk I’m willing to take-wound problems. Like I said, “THIS IS WAR” and I’m not backin down until this nerve is gone for good.

I know what your thinking but I’m actually very lucky to have a surgeon willing to go thrice trying to help me. This is his last suggestion, after that-he is outta ideas. You’ve got to remember I am a complicated case with circulating immune complexes causing inflammation in my blood vessels that press on nerves and damage them. This is my particular present from lupus.

So…….that’s whats happening. 🙂

“Never doubt th…

“Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has.” – Margaret Mead.

I wore my wolf hat a friend made with my lupus sticker button on it yesterday!  Everywhere I went I was asked about LUPUS.  People ARE interested!  Talk about your LUPUS!  The more we stand up and get the word out, the more likely additional funding to find a cure!  Let’s get the conversation started!!!  From the words of The Lupus Foundation of America:  LUPUS, Help us solve the cruel mystery!!!

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Top 5 Ways To Manage Lupus Fatigue

Short music video on managing chronic fatigue with LUPUS

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Lupus Pals – All about LUPUS & Support

Short music video about LUPUS, understanding lupus, support for lupus and info about SLE.