Lupus day 14.

 Hi Everyone!

During lupus month I have shared some different symptoms that can happen. I want you to know that not all lupus people get all of these symptoms and some of these happen to  people who DON'T have lupus. The thickening of blood is one of them. 

From the lupus foundation of Pennsylvania.

In the last few years I have been getting nodules on my thyroid ( many people have thyroid nodules and don't have lupus) and now my left lung. I had a CT scan a few months ago on my stomach and through that was seen the nodule on my left lung. I had a CT scan yesterday to see if it is growing or changing. There are no changes. The nodules on my thyroid have changed and I have had several biopsies. Thank the gods that they have all be benign. So, that got me to thinking. Does lupus cause nodules?

 In fact, lupus can cause nodules in various organs, including the skin, lungs, kidneys, brain, and other areas.  

Nodules, which can be raised lesions, are a manifestation of lupus, and their presence can indicate inflammation and tissue damage. 

lupus  can lead to thyroid problems, including thyroid nodules, and lung complications, including nodules. Patients with lupus often have antithyroid antibodies, which can lead to thyroid inflammation and nodule formation. Hashimoto's thyroiditis, an autoimmune disease that causes inflammation of the thyroid, is a common thyroid problem associated with lupus. However, because Hashimoto's is an autoimmune disease on it's own you can have it without lupus.

As far as the thyroid nodule lupus patients do have a slightly increased risk of developing thyroid cancer. Studies suggest an increased risk of papillary thyroid cancer in patients with lupus, especially those with thyroid autoimmunity. That would be me. In addition my sister had thyroid cancer. So my ENT watches me closely. 

Thyroid biopsy.

As for the brain. Two lesions were found on my brain 25 years ago. Even though they have grown they are very slow growing and have not turned ugly.  I have mentioned before that in 2013 an MRI showed hundreds of white spots on my brain. No changes with those either. I get an MRI every year. 

I'm sure, ( ya know I'm not a doctor) that the lung nodule is from on going inflammation of my lungs. It's a very painful ordeal that radiates through the whole top of my body to my back and shoulders. In fact, that's how I know it's coming. One of my shoulders starts to hurt. It's an indescribable pain. 

The inflammation in the lungs, can cause nodules and damage lung tissue, potentially leading to scarring and fibrosis.

Not my CT scan 

 

That's it for today. 

For all of you I wish you good health.

 

Nicole

lupus awarness day 13

 Hi Everyone!

Here it is day 13 for lupus awareness. This meme came from Lupus in Color a very nice website if you are interested. 

There are many different kinds of blood disorders due to lupus.

Anemia is a common complication of lupus, often manifesting as anemia of chronic disease (ACD). This occurs because chronic inflammation associated with lupus interferes with the body's ability to use iron stores, leading to low red blood cell counts. Other types of anemia, like iron deficiency anemia, can also occur in people with lupus

 

 Leukopenia, or a low white blood cell count, is a common finding in untreated patients with lupus. It can be a clue to diagnosis, as white blood cells are crucial for fighting infections. While some patients may have mild leukopenia, if the count drops below 2,000, they are at higher risk of infection.

 

Thrombocytopenia is a condition characterized by a low platelet count in the blood. Platelets are tiny blood cells that help form clots to stop bleeding. A low platelet count can increase the risk of excessive bleeding and bruising.

 

Thrombosis is the formation of a blood clot within a blood vessel, obstructing blood flow. This can happen in either arteries or veins, and the severity depends on the location and size of the clot. 

Antiphospholipid syndrome (APS) is a disorder characterized by autoimmune antibodies that interfere with blood clotting, increasing the risk of blood clots in arteries and veins. While APS doesn't usually shorten life expectancy, it can cause serious and even fatal complications if a blood clot blocks a blood vessel in an organ. 

and last for today is;

Lupus anticoagulant is an antibody found in some individuals, that can increase the risk 

of blood clots. While the name suggests it prevents clotting, it actually has the opposite effect, contributing to antiphospholipid syndrome (APS). APS is an autoimmune condition where the body's immune system mistakenly attacks clotting factors, leading to excessive blood clotting. 

 

Lupus can affect blood vessels (vasculitis) and cause various blood disorders. Vasculitis, inflammation of the blood vessels, is a common complication of active lupus.

This is someone with vasculitis from google.

And I have hypercoagulability. It is the medical term for thickened blood. Blood relies on a balance to maintain a normal consistency. If an imbalance in the proteins and cells develops, your blood can become too thick. When I get my blood drawn it tends to coagulate before the tube is filled. I drink tons of water before and the one place that works is taking it from my hand. OUCH!

 I know this was a lot to take in today about the blood. You may even hear doctors say lupus is a blood disease. IT IS NOT. It is another part of the body that is attracted.

 

Nicole

Day 12 lupus awareness

 Hi Everyone!

This is day 12 of lupus awareness.

made by me

  Some things brought to you from lupus LOL

Lupus causes wide spread inflammation. This includes internal organs, as well as external organs. To mention a few, the skin, eyes, and lips, Yes, lupus doesn't play favorites it can affect every part of your body. For the lips they can become swollen, red, and just hurt. Several things can cause this and it is worse during a flare. For me it is the dreaded sun. I have to really protect my face when I'm out.  This photo is from google images and is pretty tame compared to the other photos. I don't want to upset anyone. You can always to google and check it out. Along with this can be mouth sores.

Swollen eyes. I have a real problem with this and especially now with the sjogrens. 

Before I knew I had lupus, I woke up and my left eye was drooping down the my cheek. I thought I had had a stroke. But that was not it. For me the drooping eye, called ptosis never left me. It looked something like this only more sagging down my face. 

again the image was on google and one of the more tame photos

There are several eye problems with lupus.

This is from Very Well

In 2014 my eye did this. 

and turned to then this 

and finally this

At the time I was sent to several doctors had a boat load of blood work done and an MRI on my brain and orbs. The only thing I remember is that everyone was worried about the bleed. Of course all of my labs and MRI came back normal, well my normal. That's how it is with lupus. You will have physical evidence that something is wrong but nothing shows up on testing. The doctors don't know what to do. 

It's storming horrible out and I need to get off the PC. 

Thanks for reading about lupus.

Nicole

Things I want you to know

 Hi Everyone!

 

A few things I would like you to know. The first is, I so appreciate all of you who have commented and emailed me to say how much you have learned about lupus. 

made by me

The second thing is, even though this is lupus awareness month, I recognize and know what people go through with other autoimmune. In fact, autoimmune IS effin autoimmune and the symptoms overlap from one disease to another. This makes them difficult to diagnose. In addition, once you have an autoimmune your body will be open to other diseases that are autoimmune. So for all of my friends that suffer with;

Fibromyalgia, Addison's disease, celiac disease,  dermatomyositis, Graves' disease, Hashimoto's thyroiditis, inflammatory bowel disease, myasthenia gravis, pernicious anemia, reactive arthritis, Sjogren's, Type 1 diabetes, Giant Cell Myocarditis, Vaculitis, Anti-NMDA receptro encephalitis, multiple sclerosis, and lupus. Know that I honor you as well.

For the most horrible news ever, the last 5 are the worst of the worst and fatal. 

OK, enough of that......

 Did you know that autoimmune makes you sweat? 

We all know that sweating is the bodies way of cooking itself. Excessive sweating called hyperhidrosis is abnormal, profuse sweating that’s generally unrelated to heat or physical exertion. The autonomic nervous system is a part of the CNS. It regulates body functions that we don’t have to think about doing, like controlling breathing, heart rate, blood pressure, and body temperature. When lupus affects the autonomic nervous system, it can cause a wide range of symptoms, including excessive sweating. Excessive sweating is a common symptom of other autoimmune disorders too. This whole sweating thing gets complicated and doctors just like to throw it aside or blame it on menapause. You have to fight on this one. Many women with lupus have had early life hysterectomies and so it can't be blamed on menapause. There are some treatments for the excessive sweating and if  you are having this problem and have lupus you should talk to your doctor about it. I don't have excessive sweating but I am hot all the time. Even if it is cold in the house or outside. I do sweat but it's not dripping off my clothes. 

That's it for now. If you have any questions email me. I will try to answer them.

 

 Nicole

 

Today is World Lupus day

 Hi Everyone!

I'm playing catch up around the house and blogging. Doing just a little bit at a time. However, today is World Lupus Day.

 

It's a day to know that people all over the world are sharing knowledge to others.

Wearing my purple.

Nicole

Friday Face OFF 5/9/25

 

 Welcome To Friday Face OFF (FFO)

This is the place to show off your faces or your face. Post any type of face from any medium. You can create it, or find it in nature, or even that face in the design of the

woodwork in your house. 

Human, animal, alien, or monster. 

ANY KIND OF FACE!

 

Well, I have completely over done it in the last few weeks in the garden and now I'm paying for it. So, let's get right to this.

Friday Face Off I found some wonderful faces for this week and I hope you like them too.

I love the skin and the eyes are wonderful. All of these found on pinterest.

 

Lupus Awareness. This is how I feel right now. I have beyond 0 energy and my body hurts from the top of my head to the bottom of my feet.
Chronic Fatigue is one of the things that all autoimmune delivers without notice.

Here is some wonderful art from some of you.

Carol

 

Gillena

I so want this in my house.  Gene told me it is 5 or 6' tall.

Gene

 

Don't forget to link up with Gillena

Potassium levels back to normal and I am feeling much better.

 

That's it for me, 

now it's time to show me your face.

Nicole

Feeling bad.

 Hi Everyone!

I haven't forgotten about Lupus Awareness, I'm feeling bad and am getting a potassium infusion. I will see you for FFO. 

Nicole

Lupus Awareness day 6

 Hi Everyone!

 We just got home from our monthly Salem drive for Mr. M's doctor appt. It is always a long, tiring day for us.

However here is the day 6 fact about lupus.

by lupus in color

I will be honest I didn't know this fact. I did know that there are approximately 1.5 million people in the US with a form of lupus and about 5 million world wide. 90% of people living with lupus are women. There are a lot of misconceptions about lupus, here are just a few. 

Myth: Lupus is a form of cancer.

Fact:  Lupus is an autoimmune disease, meaning the body's immune system mistakenly attacks healthy tissues and organs, not a type of cancer. While people with lupus may have a slightly increased risk of certain cancers, it's not a direct cause-and-effect relationship. 

 

Myth: Women with lupus cannot get pregnant.

Fact: Many women with lupus do get pregnant a have healthy babies. It is important to have and obstetrician that understands lupus.

 

Myth: Lupus is curable.

Fact: There is NO cure for lupus, but it can be managed effectively through various treatments. 

 

Myth: Lupus is like AIDS.

Fact: Women, men, and children with HIV/AIDS have underactive immune systems, which means that they can’t fight infections. If you have lupus, your immune system reacts in just the opposite way: It’s overactive and attacks healthy tissues, instead of ONLY attacking pathogens. That's why if a person with lupus gets sick it can be fatal. I never leave my house without a mask.

 

Myth: Lupus is contagious and can be spread through contact

Fact: Lupus is not contagious and cannot be transmitted through physical contact. 

image by kickrockslupus

 Myth: I really love this one. People with lupus should avoid all exercise.

Fact: Regular exercise can actually be beneficial for people with lupus, helping to improve their physical and mental health. However, it's important to discuss exercise plans with a healthcare professional to ensure they are safe and appropriate for the individual's specific needs. 

I think most of you know I exercise everyday. Weather it's dancing, air boxing, gardening, walking or playing WII tennis. Even if I hurt I start moving and when I'm done I feel so much better. I have had friends with autoimmune that told me they couldn't exercise. That they hurt too much. I'm sure you know what my reaction was.....There are so many ways to get moving without even getting out of your chair. And that pain.... will subside or be gone.

I have to throw this in. My grandmother passed at 104 years. Everyday she would sit in her chair and exercise her arms with 3lb weights. Then she would get her stationary bike peddles and exercise her legs for 5 miles. She said no matter what your age, move, move, move. 

I hope this gives you more in site on lupus

Nicole
 

lupus awarness day 5

 Hi Everyone!

This is day 5 for lupus awareness month. The fact is about how difficult it is to diagnose lupus. I kind of went over that yesterday. So I have decided to, ya know, go rogue.

I may have used this meme last year but it is so fitting and it makes me laugh. 

I don't know who created this image.

One of the things that a lot of lupus worriers don't talk about is, alopecia. A few months before I started getting really sick, my hair started falling out.  One thing in my family is we have good hair. My sister and I always had very very thick and very very long hair, well passed our knees. Mr. M. and I were in AZ for the winter. Had been complaining about my hair falling out. We thought it was the water, or the shampoo and Mr. M. finally said, "Your hair is fine." A few weeks later we got a visit from one of my brothers and his wife. The first thing she said to me was, "What have you done to your hair! It is so thin." Also that winter I got blisters on my arms and legs. Ya know the sun. The lady next door had a child that came down with chicken pox. I  never had C.P. as a kid so I thought that's what it was. The doctor told me no and that he didn't know what it was. Gave me some lotion and sent me home. All that and my hair is falling out. For the first time in my life I got my hair cut short.

Over the years I have lost my hair 4 times. I got to the point that shaving my head was easier than dealing with hand fulls of hair. When my hair grew out the first time it was in ringlets. I mean tight ringlets like Shirley Temple. 

Yeah, and that's how I felt too. 

image from google

I found if I kept my hair short there were no curls and it was thicker. There are a few causes for hair loss. Inflammation with lupus can be in any part of your body. It's referred to as a flare. However, when this happens to the scalp  the inflammation directly attacks the hair follicles, damaging them and causing hair loss. For me my scalp gets extremely tight and my hair falls out in my hands. With SLE there is no scaring on the scalp. With CLE or discoid lupus the inflammation can cause skin lesions on the scalp, potentially leading to scarring and permanent hair loss. Medications to treat lupus can also cause hair to fall out. The second time my hair fell out I knew it was due to the medication I was on. I took a bag of my hair in with me to the doctor and told him my hair is falling out. He looked at me and said. "Well I don't know anyone who has gone bald from this medicine." OMFG! I actually said that in the long form. He just looked at me and then walked out. It was the last time I saw him.

Now, losing one's hair may not sound like a big deal to some people. I will tell you it is devastating for the women, men and especially children who go through this. 

Because it's not a choice.

AI by me

It's just one more thing to deal with while trying to stay alive.

 Nicole