Lupus Awarness Thank you

 Hi Everyone!

It's

I'm thrilled that so many of you are taking an active interest in learning about lupus.

Margaret from Thoughts & Happenings
Is showing her support by creating this lovely lupus ribbon.

She has given me permission to use it and is now part of my lupus awareness program. Thank you, Margaret.

 

Also, I have mentioned before that lupus is 5 million world wide.  Jan from The Low Carb Diabetic blog wanted to share this for anyone with lupus in the UK.

lupus UK is the only national registered charity supporting people with lupus and and helping to find a diagnoses.

lupusuk

https://lupusuk.org.uk/

 

I've been reading about the discovery of the epstein barr virus since last year, and how it reprograms immune B cells to set off lupus. So, when a comment from Christine from Chritine's Blog  mentioned about the epstein barr virus being a possible link. I thought I would elaborate on it. 

This image is a VERY small list of what the EBV can do. Reading about the virus is very scientific and way above my pay grade to explain it. LOL Let's just say it can be gruesome.

 

However, for lupus and other autoimmune it is a huge break through.

First, the EBV resides in 19 out of 20 Americans. It's stated that if you don't have EBV you have been living in a bubble.

EBV is highly contagious and spreads primarily through saliva.  Key transmission routes include kissing, sharing food, drinks, utensils, or toothbrushes, and contact with toys used by children. The virus can also spread via saliva-contaminated items for weeks after infection. You can see how kids are the first to contract it. 

 

Now for the exciting part.  

This is William Robinson MD, PHD 

He is from Stanford Medicine and has been working on this for 20 years.

 Quote.

“This is the single most impactful finding to emerge from my lab in my entire career,” said William Robinson, MD, PhD, a professor of immunology and rheumatology and the study’s senior author. “We think it applies to 100% of lupus cases.”
This is all a very new discovery and was publish November 12, 2025  in Science Translational Medicine.

The discovery not only clarifies the long-suspected role of EBV in lupus but also offers a roadmap for understanding how viral infections might ignite other autoimmune diseases such as multiple sclerosis and rheumatoid arthritis. The research was supported in part by the Lupus Research Alliance, a nonprofit organization which called the findings "a breakthrough that provides a mechanistic model for how a common viral infection may trigger autoimmunity." 

 

The discovery of the (EBV) as a primary trigger for lupus has shifted research toward potential long-term cures, with clinical trials for new targeted therapies, such as B-cell depletion, slated for 2026. While no definitive timeline for a cure exists, researchers are optimistic that targeting EBV could revolutionize treatment. 

 

You now understand why it is so very important that federal research money is not done away with through this administration.  The research for lupus and other diseases is this close to a cure. 

Please contact your congressional representatives and demand that they make sure there is lupus research funding. If a cure for lupus is found it will lead to cures for other autoimmune.

Thank you all for caring.

Nicole 

 

Stanford Medicine 

Q&A with William Robinson MD 

Science Translational Medicine   

Lupus Awareness Month Stress and Pain

 Hi Everyone!

It's 

Before I get started I was asked how long I have had lupus. I had symptoms as far back as 5 years old. I wasn't diagnosed until 1999. Yeah, that sucks too.  

 

There is so much going on for lupus in the US and around the world. I wish I could attend the gatherings, the walks, the balloon releases, and the meetings. Every state has something going on and this year it's all about hope. Hope for new research, hope for new medicines, hope for a cure.

It's what we hang onto.  

 Because lupus is killing us.

The everyday pain can be anything from a migraine, to pain in the hands and feet, to stomach pain, chest pain, and on the really bad days pain that radiates the entire body. Your skin hurts, your eyeballs hurt, and it hurts to move. It can last a few hours, a few days, a few weeks, and even forrrrr ever.

The main reason for lupus pain is systemic inflammation. Lupus sets the immune system to produce antibodies that damage tissues, causing widespread inflammation. A few months ago lupus attacked my large intestine. You can see how huge it is in the ex ray. On the other side you can't see my intestine at all. It's that shadowy space inside the black lines.

The pain with this just about sent me to the ER. However, I know from experience that I would not be medically treated properly. My new PA is very good though and put a rush on some meds that helped. A very powerful cortisone with pain relief and a medication to calm my intestines. It's why I had to take some time off from blogging.

 So you see lupus can attack anywhere in the body.

What triggers flares that cause pain and skin rashes? It can be ANYTHING from daily stress, to the change of seasons, to eating wrong, (even though there is NOT a special diet for lupus) You can be having a great day, with laughter and fun and lupus will steal that too. 

We live knowing that each day will bring on new challenges. Challenges that may upend the day, or a planned outing. 

Every day I have to judge my body and my brain to see what I will be able to do. 

 

Now with all of that written above, I want you to know that I live my life to the fullest. I don't allow lupus to be in charge. Even if I'm feeling like crap. 

And so are all of the other people who live with lupus. 

If you suspect you have lupus contact your health care provider and ask for lupus blood work, that's where you start. 

 

Nicole

Tuesday Lupus Awareness month.

 Hi Everyone!

It's 

 

 I'm often asked if people are born with lupus. Here is how weird lupus is.

 

Researchers aren't sure what causes lupus. It's believed that a combination of genes, hormones and environment may be the culprits. 

Genes, which your parents pass down to you help define your body's features and traits. Scientists have identified more than 50 genes that are more common in people with lupus. Part of the weirdness. It's said that these genes aren't enough to cause lupus. However, they do raise your risk. In addition if you have family members who have lupus or other autoimmune disease,  it's more likely you'll have lupus too.

My dad had lupus, and 2 of my brothers had/have diabetes. So autoimmune runs in my family.

The hormone part. 

Hormones are the body's messenger that keeps everything balance by sending signals between body parts.  Hormones are critical for how the body functions. There is a lot of research in various hormones and lupus. Especially estrogen. The subject is vast, complicated and with mixed results. Possibly why more women have lupus than men.

I will leave a link at the bottom of the page if you want to delve into it.

 

Another weirdness. In all of my research over the years for lupus. I have read that you aren't born with lupus. However, there is Neonatal lupus that is not the same as chronic lupus. It is temporary lasting maybe 6 to 9 months. Symptoms present with skin rash, liver issues and blood count abnormalities. The most sever NLE is  congenital heart block that is a serious permanent condition. This can happen when the mother has the antibodies of certain autoimmune.  A small number of babies with NeoNatale lupus contract full blown lupus (SLE) later in life. 

 

The images of babies with NLE are very horrendous and quite disturbing.  I prefer not to show them.

Instead I will show the "new" criteria list for lupus. A person must have a 10 or higher to be considered for a diagnosis.

I wish this was the list when I was diagnosed. Because some of the things listed here I had and were dismissed by rheumatologists. Such as alopecia and seizures. Which they now know are non epileptic seizures caused from lupus.

 

I, along with many other women, were told we were faking it.  I would really like to see those doctors now. 

For me, I have not had a lupus seizure in 25 years. I do still lose my hair once in awhile. The reason I keep my hair very short.

 

I hope this session has given you some more insight on lupus and the research. 

 

I'm a ferocious lupus fighter, along with the 5 million others world wide.

If you suspect you have lupus contact your health care provider and ask for lupus blood work, that's where you start.

Nicole

 

A link on hormone and lupus only if you want to LOL

lupus national foundation of America 

National library of Medicine 

 

 

Monster Monday with some pretties.

 Welcome to 

I spent time and I do mean time on NightCafe. With the new changes it takes forever to create one image. Unless you pay for it. 

Oh well, here are my monsters for the day.

Not really monsters just cute kitties. 

 

Here are some strange but beautiful images. 

and a few fairies. Don't ask why all of these are in shades of pink.  

That's it for now. Have a fabulous Monday. 

 Nicole

Sunday in the Art Room SITAR

 Welcome to

SITAR is about ANYTHING art. Your art, someone else's art, writing, photography, the art of cooking, the art of sewing and textiles. Sharing historical art, street art, a story about art. Do you have a question or need help with art? Write a blog post and link it up here. We will all try to help with it. My only rule is that if someone asks for critique it must be done with generosity and consideration. 

This is a place of learning, encouragement and inspiration.

 

Just a small a reminder. I am not a master at art. I just love creating.

 

Are you an impatient artist? I used to be. I wanted to get through an art project as quickly as I could. I think  just to "see" the results. Until a few years ago when I watched a video about taking my time to draw. What a difference it made, not only in the results, but my mind set as well. I still do 5 to 20 minute warm ups. 

These are old drawings and the first one is actually a 3 minute drawing.

 

You might ask why take the time to do warms up drawings? There is a good reason for it. It physically loosens muscles, improves hand eye coordination and mentally bridges the gap between daily life and creative flow. Because you are focused only on the art. It also eliminates perfectionism, builds confidence by reducing art anxiety. I have a drawing on my easel right now that I have changed the mouth 4 times. That's art anxiety. 

Let's get back to taking your time. 

On my last FFO Portrait challenge I worked on all 5 expressions. Most of them I took my time on, but this one I did in a few hours the day before the challenge. 

There are a lot of hard lines, and the blending is not great. Compared to this one where his jaw line fades out and his ear is part of his face. The values on the inside of his mouth show depth and his eyes are glossy.  

These are just some of the differences of taking your time. Feeling the piece you are working on. Changing little nuances to the art. Making it your own, even if you are working from a photo or even from life. 

So, my question again, are you an impatient artist?

Let me know in the comments.

 

Create with all of your passion.

Nicole 

 

 

Lupus Awareness Month

Hi Everyone!

May is

 

First for those of you who don't know.

Lupus is a chronic autoimmune disease where the immune system is over stimulated. This makes the immune system mistakenly attack healthy tissues, causing widespread inflammation and damage to organs, joints, muscles and skin. It's characterized by periods of flare ups and remissions. Symptoms vary widely, including but not limited to extreme fatigue, joint and muscle pain, and a marlar rash that takes on the shape of a butterfly across the cheeks and nose. Giving the Butterfly one of the mascots. The other is the Wolf. Lupus is the Latin for Wolf. I will get into some history in later posts. 

Some more but not all of the symptoms We can have one or a host of these at one time.

Now that you have an idea of what lupus is and how it affects the body, here are some facts.

 

  

 

Here are some myths and facts.

 

If you suspect you have lupus contact your health care provider and ask for lupus blood work, that's where you start. There are a set of criteria questions as well.

For me living with lupus really does suck.

When I wake in the morning I have to gauge what my body wants to do.

Everyday is different. 

Nicole
 

Friday Face OFF Graphite and colored pencil

Welcome To Friday Face OFF (FFO)

This is the place to show off your face art.

You know, ANY type of face, nature, the face of a flower, photography, drawings, paintings, AI. There just needs to be a face in your blog post, a link back to my blog and please use the image below. 

Thank you.

I can't express how happy I am that so many of you talented artist joined in with the FFO Portrait Challenge. I'm very impressed with the art that was created and thank you all for joining in. 

It's an honor to know all of you.

 

Before I get started, most of you know that I share my body with lupus/sjogren's. May is lupus awareness month. I try to share every day of this month exactly what lupus really is.

So to start it off I'm letting you know it's

  

Now for the art I created. This face I did some time ago.

She starts like this. 

 

Then this 

 

And Finally, this. I do like her gently smile.

 

Now for last weeks 

FFO Portrait challenge entries. In case anyone missed them.

Iris 

Violetta

Kwarkito

Tom

Arnoldo

Debra

Erika

Christine 

Maria

Mia

Jeanie

Leeanna

Louise

Carola

Aimeslee

Linda 

Gillena 

Thank you again to everyone who joined in the FFO Portrait Challenge.

I will be posting for Sunday in the Art Room, I promise.

 

Now it's your turn to show me 

this weeks Face.

Nicole