Feels like the flu, multiplied by a thousand – YouTube


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Turning my test into a testimony! Join me in saying kNOw to Lupus!

KNOW LUPUS Public Service Announcement – 60 Second Version

Molly’s Fund Lupus Hair Loss and Alopecia Explained – Molly’s Fund

Getting diagnosed with lupus is scary and upsetting enough without the added stress of potential hair loss. The physical ramifications of what systemic lupus erythematosus (SLE) can do to the body internally are indeed very scary. But the emotional toll of looking in the mirror and seeing a dramatic change in our external appearance is just one more thing that can make living with lupus more difficult. So, can lupus cause hair loss? The simple answer is, unfortunately, yes. Because lupus causes widespread inflammation throughout the body, many times it can also involve your skin-which is the largest organ of the body. Inflammation of the skin can result in rashes or even hair loss occurring most often on the face and scalp. The medical term for hair loss is alopecia. It is usually described as hair noticeably thinning orHair loss problem with hairbrush falling out in clumps or in patches. Although a few people with lupus will lose clumps of hair, the disease can also cause gradual thinning of the hair on your scalp. It is also possible to notice loss of hair of the eyelashes, eyebrows, beard or body. There are two main types of alopecia: scarring and non-scarring. Scarring means that the hair follicles have been destroyed by inflammation (and thus there is no chance of hair re-growth). Discoid lupus is one major cause of scarring alopecia. However, if caught early enough (before scarring takes place), it is possible to see hair regrowth. Non-scarring means that the hair follicles are still present and hair regrowth is possible. Hair loss can be one of the first signs or symptoms of lupus. Approximately half of lupus patients will experience at least some form of lupus hair loss and alopecia. This often occurs at the beginning of the disease but can also appear along with certain medications and treatments that may be prescribed to manage more serious lupus symptoms. Back to top  

To read more please go to Lupus Hair Loss and Alopecia Explained

Coping With Lupus and Memory Loss 

Are you feeling forgetful? Lupus and memory loss can occur together.

I decided I would share about lupus and memory loss for this post. 

Lupus (systemic lupus erythematosus) can cause brain fog and memory problems. Lupus is a chronic inflammatory disease caused by the body’s immune system attacking itself – also known as an autoimmune disease.

Unfortunately, lupus can affect joints, skin, the kidneys, blood cells, the heart, lungs and the brain. When lupus affects the brain is can lead to lupus fog.
Thinking, Memory and Behavior

In about half of people with lupus, the disease attacks the brain and spinal cord. Lupus can also affect the peripheral nervous system, which is made up of the nerve fibers that give skin and muscles the power for feeling and movement. These developments can be very frightening and frustrating. Thankfully, there are steps a person can take to make things easier. Doctors who specialize in these complications are called “neurologists.”
What is the most common kind of lupus brain involvement?

Many people with lupus—at least one in five—have trouble thinking clearly at some point and experiences memory problems, confusion, fatigue, or difficulty expressing thoughts. Called cognitive dysfunction, the condition likely occurs because blood stops flowing as smoothly to the brain as it should. This also can happen when lupus antibodies cross the “blood-brain barrier,” directly damaging brain cells in areas that store memories and other important information. Cognitive dysfunction may come and go, but often steadily worsens over time.

What is lupus fog?

Lupus fog is the forgetfulness or fuzzy-headed feeling that can come along with lupus. Lupus fog can consist of memory problems, but it can also include cognitive impairment as well. Concentration, thinking ability, self-expression and memory problems can all be tied to lupus fog.

Unlike other cognition and memory disorders, like dementia, lupus fog does not get worse over time but can be temporarily worse during a lupus flare-up.

It is not fully understood why lupus fog occurs, but it is theorized that factors such as fatigue, stress and depression can all play a role in lupus fog. Another theory is that lupus fog can be a side effect of medications.
Lupus fog symptoms

Symptoms of lupus fog include:

* Lack of concentration or ability to focus

* Impaired ability to recall or remember information

* Difficulty problem solving, organizing information and critical thinking

* Trouble quickly coordinating hand-eye movements
Living with lupus fog

Another helpful tip that can make living with lupus fog easier is being honest with yourself – don’t be hard on yourself when you can’t recall something. Although it can be frustrating, putting yourself down won’t make it any better. Reaching out to others is also important, so they can begin to understand your condition and be more attentive and supportive of your needs. Family and friends can also be of more assistance if they know what exactly is going on. Lastly, speak with your employer and make them aware, so they don’t just believe you’re not doing a good job.

The more open you are about your condition, the less stress and depression you will feel; two factors that can make lupus brain fog worse.

Living with lupus fog can be frustrating and can affect everything from memory to concentration to thinking ability. But with proper coping mechanisms, living with lupus fog is possible. 
What is “lupus fog?”

A part of cognitive dysfunction, some people with lupus get spells of “fogginess” when, for several seconds or minutes, they can not get to information that they know is in their heads. They may read the same sentence over and over again, for example. Or struggle with a normally easy task, like balancing a checkbook or dialing a familiar number.
Here are some tips in order to better live with lupus fog.

* Put information in writing in case you cannot recall it later.

* Stay organized.

* Prioritize your daily tasks.

* Say things out loud; it helps with memory recall.

* Time yourself and schedule tasks.

* Play mind games to stretch your memory, like crosswords and other puzzles.

* Maintain healthy habits, such as exercising, eating well and getting proper sleep.
To read more about Lupus Fog and Memory Problems go to 

All so check out this link below for more info.


To say or not to say … 

Something that has been on my mind lately is whether sharing myself openly to the world about having Lupus is the “right” decision.

Lupus Care Community

Something that has been on my mind lately is whether sharing myself openly to the world about having Lupus is the “right” decision.

I’ve always been a private person. An introvert at heart. It’s much easier to write here on the blog than to really speak up in the open.

I don’t like drawing attention to myself…

I’ve had some negative remarks from my people about the fact that I try to be more openly talk about it when there is a chance…

It’s not that I want the whole goddamn world to know my pain and sufferring… It’s more that… During those times when I really am struggling with the pain and living with this illness… I wish with all the fibres of my soul that a cure is there. That there’s a magic pill I can take and everything will return to how it was… A healthy body.

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