Find Support On Lupus Connect

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I just wanted to share some great new information with all my Lupus warriors out there. Did you guys know that The Lupus Foundation of America in partnership with Inspire, has launched LupusConnect™ ?  It’s an online Lupus community where individuals with Lupus and their loved ones can engage with others like them to share experiences, find emotional support and discuss practical insights for coping with the daily challenges of the disease.

LupusConnect encourages its community members to ask questions, reply to posts and read about others’ experiences in a safe and comforting community.

It can be accessed directly at LupusConnect.Inspire.com or through the National Resource Center on Lupus.

Research shows that Lupus patients and other autoimmune warriors are looking for social support and assistance coping with their disease. Specifically, they are looking for a resource where they can connect online with other people like them.

Based on this input and conversations with constituents, the Lupus Foundation of America partnered with Inspire to leverage its social health network and build an online community that brings together people affected by Lupus to share their stories and learn from the experiences of other people impacted by this devastating and life-altering disease.

“No matter how isolated Lupus can make people feel, LupusConnect offers people the opportunity to express their fears, frustrations, and hopes with others who understand Lupus firsthand,” said Sandra C. Raymond, Lupus Foundation of America CEO. “We are excited to partner with Inspire and to continue our commitment to providing people impacted by lupus with access to high-quality resources and support services.”

As people living with Lupus, we know first hand the difficulties we face and the benefit of connecting with others who genuinely feel our pain. Check out Lupus Connect. It’s free and it just might change your day.

 

 

 

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Accepting A “New Normal” Life With Lupus

 

Life with Lupus can be a tough pill to swallow. For most, Lupus has a way of rearranging our lives at a moment’s notice. After a Lupus diagnosis, sometimes we are faced with enough questions to make our heads spin. But, there is hope.

Paying very close attention to our bodies is critical in learning to live a new normal with Lupus. By paying attention to our bodies, we are quickly able to learn our triggers. Lupus triggers are those circumstances that occur which will usually result in a Lupus flare.

A Lupus flare is a period of unwellness when Lupus attacks a perfectly healthy part of your body. Lupus flares can range in severity and can last anywhere from a day to several weeks or months.

Lupus fighters report flares that include, but are not limited to, headaches, muscle pain, inflammation, skin rashes, and disorders involving the kidneys, bones, heart, lungs, and brain.

Once we are able to establish things that may cause a Lupus flare, we should create new habits in our daily life to minimize those annoying, unpredictable flares.

It may be a new normal, but practicing good daily habits can make life with Lupus an acceptable new stage of your life.

Read here for detailed tips you can use daily to avoid a Lupus flare.

“The first step toward change is awareness. The second step is acceptance.” -Nathaniel Branden

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The Impact of Lupus on the Entire Body

lupus affecting the body

The above image is simply a reminder that Lupus is much more than skin rashes and random pain. The effects of Lupus on the entire body is complicated and widespread. If you are experiencing symptoms related to those shown above, speak with your doctor to begin treatment before complications worsen.

 

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Treat Lupus Naturally With Cannabis

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For those of us with Lupus, we know how much chronic inflammation and pain can completely ruin your day. Very often we are treated by our doctors with prescribed medications that result in more symptoms and side effects.

Finding natural remedies with little to no side effects is a long standing goal for Lupus fighters. Treating Lupus naturally with the right foods is something we all try with varied results.

However, it has become increasingly popular for many to use cannabis products like CBD oil for autoimmune difficulties. Cannabis is widely recognized for its therapeutic relief of pain and inflammation. Therefore, it makes it an ideal solution for some Lupus fighters.

Personally speaking, I had not even thought of asking my doctors about medical marijuana. I had been on so many different medications with different side effects that I eventually just learned to accept a new normal.

After a while, I met a few people who spoke highly on the effects of cannabis in Lupus patients. As I learned more and more about medical marijuana, its benefits, and the medical marijuana program in my state, I decided to ask my doctor about it.

My doctor felt it would help my pain and insomnia in a natural way and he gave me the green light. I must say it was one of the best decisions I’ve made in a minute.

The grueling process to get a medical marijuana card in your state is annoying, but well worth it in the long run. I use cannabis twice a day which seems to make my life much closer to normal than ever.

I use it in the morning because I tend to wake up feeling pretty stiff and a little swollen. Cannabis or CBD oil for (SLE) Lupus does not have a negative unnatural effect on any of the prescription medications I take either.

I also use it at night a few hours before my desired bedtime so I am no longer watching overnight reruns of the news all night. Prior to using medical marijuana for my autoimmune conditions, I would be wide awake until around seven or eight a.m. before my eyes would eventually close.

For some, it may take some getting used to. You may need to try very low doses until you can assess your tolerance and comfort level. I can definitely say, without hesitation, Lupus can be naturally treated with Cannabis (CBD oil) and natural foods that reduce inflammation.

This is a conversation worth having with your doctor. It could change your life and take you back to the days of near normalcy.

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The Relation Between Melanin And Lupus

In humans, melanin is the primary determinant of skin color.

The melanin in the skin is produced by melanocytes, which are found in the basal layer of the epidermis. Generally, humans possess a similar concentration of melanocytes in their skin. However, the melanocytes in people of color produce variable amounts of melanin.

Some humans have very little or no melanin synthesis in their bodies, a condition known as albinism.

Exposure to sunlight stimulates the skin to produce vitamin D. Because high levels of cutaneous melanin act as a natural sun screen, dark skin can be a risk factor for vitamin D deficiency.

Vitamin D exerts a wide range of influences on immune functions. Low levels of vitamin D are associated with autoimmune diseases, especially lupus.

Vitamin D has been in the news lately for its positive impact on everything from Lupus to cardiovascular disorders.

The major biologic function of Vitamin D is to maintain normal blood levels of calcium and phosphorus. Vitamin D aids in the absorption of calcium, helping to form and maintain strong bones.

It is used, alone or in combination with calcium, to increase bone mineral density and decrease fractures. Recently, research also suggests that vitamin D may provide protection from osteoporosis, cardiovascular disorders, hypertension (high blood pressure), cancer, and Lupus.

It is important to know that it is possible to take too much Vitamin D. People often need to take large amounts of Vitamin D to reach the recommended levels in the blood. Some people may take a prescription strength dose of Vitamin D as high as 50,000 IU once a week. (This high dosage MUST be prescribed by a physician.)

Others use 2,000 to 3,000 IU of Vitamin D over the counter and do not take prescription doses of Vitamin D. Vitamin D levels in the blood should generally be between 30 and 100 nanograms per milliliter. But, between 20 and 30 nanograms per milliliter is considered an intermediate level according to the Endocrine Society clinical practice guidelines.

Vitamin D is a fat soluble vitamin so it sticks around for a longer time than water soluble vitamins, like Vitamin C which helps explain how you can take too much of it.   If your Vitamin D level is quite low, or doesn’t respond to 2,000 to 3,000 units of Vitamin D over the counter, a prescription for the higher dose is usually recommended.

In any case, it is wise to have the Vitamin D level in the blood checked periodically to make sure your levels are in an appropriate range.

For all my Lupus warriors with an abundance of melanin, it is crucial to have your Vitamin D levels checked. The fact that we have to avoid the sun further limits our Vitamin D absorption. Be sure to speak with your healthcare provider to assess your current Vitamin D levels. He/she will be able to prescribe a sufficient amount of this crucial vitamin to help reduce Lupus flares.

Be strong. Be fearless.

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Summertime With Lupus

Anytime spent battling Lupus is a major challenge for most of us. However, summertime with Lupus has proven to be especially complicated in comparison to the remainder of the year.

Needless to say, the sun is especially hot in the summer. Photosensitivity is an extreme sensitivity to ultraviolet (UV) rays from the sun and other light sources. This is especially common in people with Lupus and a few other autoimmune diseases.

Photosensitivity is a major symptom of Lupus. It can cause skin rashes, fever, fatigue, joint pain, and other symptoms that make summertime unbearable for many Lupus warriors.

The link between the sun and lupus flare-ups is thought to be a set of inflammatory protein molecules called cytokines, which are activated when ultraviolet light hits the skin. The skin inflammation that results can create a chain reaction of other symptoms.

Personally, I have experienced major Lupus flares in the summer. I have an extreme sensitivity to sunlight in my eyes which makes it impossible to look directly in the direction of the sun.

I also get bad skin rashes on my face over the nose and cheeks. The white Vitiligo patches of skin on my legs spread more quickly in the summer as well. The exposure to the sun also trigger flu type symptoms that include extreme fatigue, low grade fever, and painful joints all over.

In conclusion, do your best to avoid the sun at all costs. These symptoms will undoubtedly occur during other times of the year but will generally worsen in the summer. The effects of Lupus flares in the summer will last far longer than the joys of outdoor summer activities.

Doctors say a UVA and UVB sunscreen is just one component of a multi-prong approach to limit the extent of Lupus symptoms while outdoors. Other strategies include sun-protection clothing, applying a sun-protection coating to car windows and staying indoors from 10 a.m. to 3 p.m whenever possible.

 

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Signs and Symptoms Doctors Look For To Diagnose Lupus

To help doctors diagnose lupus, a list of 11 common criteria was developed by the American College of Rheumatology (ACR). ACR is a professional association of rheumatologists. Rheumatologists are the doctors who specialize in treating diseases of the joints and muscles, like Lupus. If you have/had at least four of the criteria on the list, there is a strong chance that you may have Lupus.

  1. Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
  2. Discoid rash – a rash that appears as red, raised, disk-shaped patches
  3. Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
  4. Oral ulcers – sores appearing in the mouth
  5. Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed
  6. Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis)
  7. Kidney disorder – persistent protein or cellular casts in the urine
  8. Neurological disorder – seizures or psychosis
  9. Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
  10. Immunologic disorder – anti-DNA or anti-Sm or positive antiphospholipid antibodies
  11. Abnormal or positive antinuclear antibody (ANA) lab test

If you have yet to receive a Lupus diagnosis but feel you have Lupus based on the above criteria, it is important to speak with your healthcare provider to voice your concerns so that appropriate treatment can begin.

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Lupus Overlap Diseases

What do I mean by Lupus overlap diseases?

Many people with Lupus have symptoms of one or more of other connective tissue diseases. Your doctor may refer to this as an “overlap.”

These overlap diseases are usually a closely related group of disorders that affect the connective tissues of the body.

I have actually been diagnosed with a few of these overlaps as well. To date, I have been diagnosed with Sjogren’s Syndrome, Scleroderma (CREST), Polymyositis, and Dermatomyositis, Raynaud’s Syndrome, and Vitiligo as well as SLE. My doctor also is suspecting the presence of Sarcoidosis in my body but she stopped short of a diagnosis.

SCLERODERMA

Systemic Sclerosis, also known as Scleroderma, is an autoimmune disease derived from the Greek words “sclero”meaning hard and “derma” meaning skin.  One of the most common symptoms of this condition is the hardening of the skin.

The milder form of Scleroderma is called localized Scleroderma. This localized version of the disease is generally found to affect the skin and muscles only. It does not attack internal organs much like Lupus and other autoimmune diseases.

The more complicated form of Scleroderma, which I have, is called Systemic Scleroderma. This type can attack different internal organs along with the skin including the esophagus, gastrointestinal tract, lungs, kidneys, and heart. It can also affect the muscles, joints, and blood vessels.  The hardening of these organs and tissues can cause them to function less efficiently.

RHEUMATOID ARTHRITIS

Rheumatoid arthritis is another autoimmune disease that attacks healthy tissues. As a result of the attack, fluid builds up in a patient’s joints, causing pain in the joints and inflammation that is systemic, meaning it can occur throughout the body. A patient will likely experience various periods of flares and remissions that differ in length and severity.

RAYNAUD’S PHENOMENON

Raynaud’s Phenomenon represents a problem with blood flow that causes your fingers, toes, and the tip of your nose and ears to feel numb and cool in response to cold temperatures or stress. It can be quite an annoyance and affect your day unexpectedly. Most of the time it only lasts for a short period while your body is reacting to the cold or stress. In Raynaud’s disease, the smaller arteries that supply blood to your skin narrow and limit blood circulation to affected areas. Like many of the diseases listed as “overlap” diseases, women are more likely to have Raynaud’s disease. Go figure.

SJOGREN’S SYNDROME

Sjogren’s syndrome is characterized by inflammation of the exocrine glands. The symptoms vary from person to person. In my case, it affects my eyes and mouth mostly. My eyes and mouth get extremely dry and I have been put on Pilocarpine. It has shown to be quite helpful with my Sjogren’s. The Pilocarpine eye drops add moisture and the Pilocarpine pills taken orally assist my mouth in creating saliva.

Some people with Sjogren’s may experience digestive disorders which should be thoroughly discussed with your doctor to provide the best remedy. Pancreatic enzymes are often added to a person’s diet to help alleviate digestive problems.

Like other autoimmune diseases, the complications of Sjogren’s are much broader than the digestive system, eyes, and mouth. Do not hesitate to speak with your doctor concerning any new symptoms that are unrelated to your mouth and eyes. It is important to address new symptoms that may arise to avoid greater severity.

POLYMYOSITIS / DERMATOMYOSITIS

Polymyositis and dermatomyositis are disorders of the body’s connective tissues, which include tendons, ligaments and the dense sheets of collagen-based tissue that cover the ends of the muscles.

These diseases cause swelling and tenderness in the muscles (polymyositis) and sometimes the skin (dermatomyositis). The disease causes weaknesses in the arms and legs.

Both Polymyositis and dermatomyositis have symptoms in common with sclerosis or sometimes lupus.

Signs of these conditions may appear suddenly and severely or gradually and more mildly. Symptoms are more likely to be gradual in older people. Sometimes a person may have a serious infection before the symptoms begin.

The symptoms include:

  • Muscle weakness. This is usually not noticeable until the disease is advanced and about half the muscle fibers have been destroyed. A person may have difficulty raising his or her arms above the shoulders, climbing steps or rising from sitting. If the neck muscles are seriously affected, it may not be possible for the person to lift his or her head from the pillow. If the muscles of the throat are affected, the person may have difficult using his or her voice.
  • Contraction of the arms and legs. While the hands, feet and face are usually not affected by this condition, the arms and legs may tighten up in the late stages of the disease.
  • Shortness of breath. This is caused by gradual damage and weakness of the chest wall and the muscles that move the diaphragm during breathing.
  • Difficulty swallowing. This may occur when the muscles of the throat and esophagus (the tube that connects the mouth to the stomach) are involved
  • Muscle tenderness or pain
  • Raynaud’s phenomenon
  • Fever
  • Feeling tired
  • Weight loss

Compared to lupus or sclerosis, there is relatively little organ involvement with polymyositis. Sometimes, however, the effect on specific organs may be the first symptoms. These include breathing problems, heart disorders involving irregular rhythms or electrical signals, kidney failure or digestive tract ulcers.

If dermatomyositis occurs along with polymyositis, symptoms may also include:

  • Skin rash. This can be either raised and smooth or scaly. It may appear on the forehead, the neck, shoulders, chest and back, forearms and lower legs, elbows and knees or the joints of the fingers, toes, wrists and ankles.
  • Swelling around the eye. This may look purplish and bruised.
  • Swelling at the base and sides of the fingernails
  • Splitting of the skin of the fingers

While the skin eruptions often completely fade away, some leave behind brownish spots, scars or smooth white patches.

As you can see, most of the disorders listed above occur or “overlap” in other autoimmune diseases and may be difficult to differentiate which ones are originating from what. Therefore it is important to keep open communication with your doctor regarding your symptoms. If you don’t feel comfortable speaking with your doctor or your doctor dismisses your concerns, it may be time to try to build a new relationship with a new doctor.

Be vigilant and stay informed. If you have questions, be sure to keep a list of them and ask your doctor at your next appointment. Whatever it takes, make your doctor pay attention to your concerns. Your doctor is your first line of defense in your fight. Good luck.

 

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Is Lupus Contagious?

One of the most common questions I get would be, “Is Lupus contagious?”

The simple answer. No. Lupus is not contagious and can not be transmitted from person to person through any means.

However, many genetic predispositions and gene environment interactions have been shown to predispose certain people to develop this awful and unpredictable autoimmune disease.

No need to worry. You won’t catch it from someone. And if you already have it, you won’t infect those around you.

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Famous Faces of Lupus

In America, about 1.5 million people have lupus. Even though Lupus is found more often in women of color during childbearing age, Lupus can affect people of any race, gender, and age.

Below you will find 10 famous people of color diagnosed with Lupus:

1. Michael Jackson

2. Toni Braxton

3. Selena Gomez

4. Nick Cannon

5. Seal

6. Tim Raines

7. Cori Broadus (Daughter of Snoop Dogg)

8. Yuko Goto

9. Trick Daddy

10. J. Dilla

 

 

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