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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Pulmonary Arterial Hypertension

Pulmonary arterial hypertension is a life threatening condition that is very rare but often found in Lupus patients. This condition is a type of high blood pressure that affects the blood pressure in the lungs and the heart.

It’s the type of high blood pressure that occurs in the right side of your heart and in the arteries that supply the blood to your lungs. These arteries are called the pulmonary arteries and pulmonary arterial hypertension occurs when these arteries thicken or become hard and rigid. The thickening of the pulmonary arteries makes the blood flow more difficult.

Your heart has two upper chambers (atria) and two lower chambers (ventricles). Each time blood passes through your heart, the lower right chamber (right ventricle) pumps blood to your lungs through a large blood vessel (pulmonary artery).

In your lungs, the blood releases carbon dioxide and picks up oxygen. The oxygen-rich blood then flows through blood vessels in your lungs (pulmonary arteries, capillaries and veins) to the left side of your heart.

Normally, the blood flows easily through the vessels in your lungs, so blood pressure is usually much lower in your lungs.

With pulmonary hypertension, the rise in blood pressure is caused by changes in the cells that line your pulmonary arteries. These changes can cause the walls of the arteries to become stiff and thick, and extra tissue may form. The blood vessels may also become inflamed and tight.

These changes in the pulmonary arteries can reduce or block blood flow through the blood vessels. This makes it harder for blood to flow, raising the blood pressure in the pulmonary arteries.

As the pressure builds, your heart’s lower right chamber (right ventricle) must work harder to pump blood through your lungs, eventually causing your heart muscle to weaken and fail.

Symptoms

The signs and symptoms of pulmonary hypertension in its early stages might not be noticeable for months or even years. As the disease progresses, symptoms become worse.

Pulmonary hypertension symptoms include:

  • Shortness of breath (dyspnea), initially while exercising and eventually while at rest
  • Fatigue
  • Dizziness or fainting spells (syncope)
  • Chest pressure or pain
  • Swelling (edema) in your ankles, legs and eventually in your abdomen (ascites)
  • Racing pulse or heart palpitations

Risk factors

  • You’re overweight
  • You have a family history of the disease
  • You have one of various conditions that can increase your risk of developing pulmonary hypertension
  • You use illegal drugs, such as cocaine
  • You take certain appetite-suppressant medications
  • You have an existing risk of developing pulmonary hypertension, such as a family history of the condition, and you live at a high altitude

Treatment

Pulmonary hypertension can not be cured but doctors can help you manage your condition. Treatment may help improve your symptoms and slow the progress of pulmonary hypertension.

It often takes some time to find the most appropriate treatment for pulmonary hypertension. The treatments are often complex and require extensive follow-up care.

Although pulmonary arterial hypertension can affect anyone, patients with Lupus are at an increased risk of developing the condition. 

This life threatening condition must be taken seriously. If you suspect you or someone you know may be suffering from pulmonary arterial hypertension, speak with your doctor as soon as possible.

 

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It’s The Weekend 

Hey Lupus warriors. The weekend is here. Enjoy your weekend responsibly. If you are heading outside,  be sure to pack any medications you’ll be needing while you’re out.

Friendly reminder: don’t forget your sun protection gear … i.e. hats, sunglasses, light colored clothing. Stay hydrated and stay away from refined sugars and/or fried fast foods.

If you can, try to find activities that limit your sun exposure. If at all possible, head outside in the late afternoon / early evening. If not, and you need to be out early, stay in shaded areas whenever possible. Whatever you decide to do, enjoy yourselves. If you want to get outside the house but avoid excess sun, jump in your car (hopefully with tinted windows) and head over to your favorite mall for some air conditioned retail therapy. Enjoy.

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Different Types Of Lupus

Generally this blog has posted about SLE Lupus and its signs and symptoms. However, there are four different types of Lupus. 

Systemic Lupus Erythematosus

Systemic lupus is the most common form of lupus—it’s what we have referred to in the past as simply “Lupus.” Systemic lupus can be mild or severe. Some of the more serious complications involving major organ systems in the body include:

  • Inflammation of the kidneys—called lupus nephritis—can affect the body’s ability to filter waste from the blood. It can be so damaging that dialysis or kidney transplant may be needed.
  • Inflammation of the nervous system and brain can cause memory problems, confusion, headaches, and strokes.
  • Inflammation in the brain’s blood vessels can cause high fevers, seizures, and behavioral changes.
  • Hardening of the arteries or coronary artery disease—the buildup of deposits on coronary artery walls—can lead to a heart attack.

Cutaneous Lupus Erythematosus

This type of Lupus is most often limited to the skin. Although cutaneous lupus can cause many types of rashes and lesions or sores, the most common—called discoid rash—is raised, scaly and red, but not itchy. Areas of rash appear like disks, or circles.

Another common example of cutaneous lupus is a rash over the cheeks and across the bridge of the nose, known as the butterfly rash. Other rashes or sores may appear on the face, neck, or scalp (areas of the skin that are exposed to sunlight or fluorescent light), or in the mouth, nose, or vagina. Hair loss and changes in the pigment, or color, of the skin are also symptoms of cutaneous lupus.

Approximately 10 percent of people who have cutaneous lupus will develop systemic lupus. However, it is likely that these people already had systemic lupus, with the skin rash as their main symptom.

Drug-induced Lupus Erythematosus

Drug-induced lupus is a lupus-like disease caused by certain prescription drugs. The symptoms of drug-induced lupus are similar to those of systemic lupus, but it rarely affects major organs.

The drugs most commonly connected with drug-induced lupus include:

  • Hydralazine—Treatment for high blood pressure or hypertension
  • Procainamide—Treatment for irregular heart rhythms
  • Isoniazid—Treatment for tuberculosis

Drug-induced lupus is more common in men because they take these drugs more often; however, not everyone who takes these drugs will develop drug-induced lupus. Lupus-like symptoms usually disappear within six months after these medications are stopped.

Neonatal Lupus

Neonatal lupus is not a true form of lupus. It is a rare condition that affects infants of women who have lupus and is caused by antibodies from the mother acting upon the infant in the womb. At birth, the infant may have a skin rash, liver problems, or low blood cell counts but these symptoms disappear completely after several months with no lasting effects. Some infants with neonatal lupus can also have a serious heart defect. With proper testing, physicians can now identify most at-risk mothers, and the infant can be treated at or before birth.

Most infants of mothers with lupus are entirely healthy.

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Happy Monday 

If you’re having a slow start to your Monday, you’re not alone.


Take your time. 

Take your meds as prescribed.  

Have a yummy kale smoothie for breakfast and / or lunch.  

Get the day moving with music that makes you move.  

If you go outside, don’t forget your Lupus protective gear. 

Have a poppin Monday 💜

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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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Lupus And The Heart

There’s no easy way to say it. Lupus raises your chances of heart disease and stroke. The most common heart problem in people with Lupus is inflammation in the sac around the heart. This can cause shortness of breath and sharp chest pains.

Sometimes steroids used as lupus treatments may increase this risk. Lupus complications are sometimes treated with powerful inflammation-fighters and medicines that calm down the immune system, such as corticosteroids like prednisone.

It is very important to note that taking corticosteroids for a long time can worsen heart health.  Doctors may want to lower the dose at times to avoid this serious complication.

Black women with Lupus and other autoimmune diseases need to pay extra attention to their heart health. Not only is heart disease the number one killer of all black women, but the death rate from heart disease is much higher in women of color. Black women are also three times more likely than white women to have Lupus—which in itself raises the risk for heart damage.

Coronary artery disease is common among Lupus patients in particular. More than a third of people with Lupus are at risk for this complication. Inflammation and various immune system abnormalities cause the coronary arteries to rapidly harden, narrow, and clog. This is called atherosclerosis. In time, clots can form or bits of plaque can break off from artery linings, interfering with blood flow to the heart and brain.

Less common causes of coronary artery problems in people with Lupus include inflammation of the artery walls, spasms of the arteries, and blood clots. Female Lupus patients are 50 times more likely than their peers to have chest pain or a heart attack.

Ladies, time to treat your heart with LOVE.

  1. Eat healthy. To keep your weight, blood pressure, and cholesterol under control, fill up on fruits, veggies, and whole grains. Eat baked or broiled fatty fish like salmon at least twice a week. It’s rich in heart-healthy omega-3 oil. Major key…Avoid fast foods and fried foods at all costs. If you can’t, try harder. But if you must eat them, keep it down to a minimum or choose the healthiest options available.
  2. Avoid smoking. If you are a smoker you really have no choice but to quit ASAP. I know it seems easier said than done, but you have no choice if you want to live. I smoked for almost 20 years and found it difficult to quit myself. I tried and failed several times until I got sick and realized how much tobacco was adding to the destruction of my body.
  3. Get regular exercise. Activities that are easy on your joints are crucial for Lupus patients. Yoga, swimming, pilates, are great ways to keep your heart and lungs strong with low impact on damaged joints.

Additionally, it is imperative to keep regular doctor visits as well as keeping your doctor informed of any unexpected changes such as shortness of breath and chest pain before these things escalate.

With effective communication and shared information, we are in a better position to arm ourselves for the Lupus and heart battle that many are not fortunate enough to avoid.

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