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My Story: “How Lupus Destroyed My Marriage”

Fact: According to the Lupus Foundation of America, more than 60% of people who suffer from Lupus will experience some type of memory problem such as recalling names, dates, appointments and balancing a checkbook. The harsh reality, it that’s not the hardest part.

Most of us with Lupus also suffer from clinical depression, a condition that is brought on by a combination of medication and the drastic lifestyle changes.

I’ve suffered a lot of losses dealing with Lupus, but the greatest loss of all, was allowing Lupus and chemical depression to destroy my marriage.

I hate this disloyal disease; I hate that I allowed this disease and my negligence to get mental treatment sooner to force me to make some poor decisions in life and as a result, destroy my family.

My husband was literally my heartbeat and if I could turn back the hands of time, I would have swallowed my pride and sought help sooner. But instead, I cared about what others would think of me, if they knew that I was depressed.

I can handle this on my own is the lie I told myself.

I was diagnosed with Lupus and unexplained infertility in 2003; this was the same year I met my ex-husband, an extremely handsome, brilliant and wonderful medical professional. He and I fell head over hills in love, we were eager to be married and grow our blended family.

My first year dealing with Lupus was the hardest because, I found myself undergoing a whirlwind of mixed emotions, medications and lifestyle changes. That year alone, I suffered with constant chronic hives, I gained more than 75 pounds, migraines, memory loss and I itched uncontrollably.

Before my diagnosis, I was a woman that didn’t even know how to swallow a pill, suddenly I was taking six to eight pills per day just to live. 

In 2004, as a new wife and after a year of unsuccessfully trying to get pregnant, I started to feel like less than a woman and that made me angry all the time.

I felt: It is my job that was bestowed upon me by God, to procreate, be fruitful and multiply and I was having difficulty doing what some women simply take for granted.

Sex had become a chore in my marriage and was no longer an enjoyment, and at that point, I treated my husband like a tool for baby making verses making love to him as I should have.

Although we loved each other, I started to feel less desirable to my husband.

At one point, he actually lied to me, so that he could go and hang with his guys. My ex-husband felt bad that he had a life outside of work, kids, and me.

Looking back, I don’t blame him.

As the years went by, I still had no baby and my health was not better at all.

The stress of not being able to conceive and the abrupt lifestyle changes of living with Lupus began to take a toll on me mentally, physically and emotionally.

I am angry all the time, mostly at my husband. He worked many hours per week at the hospital and it felt as though, when he

wasn’t at work, he was on-call, or hanging with the guys playing video games, etc. This was frustrating because sometimes, I just needed him to be there and I should have understood he was working to provide for our family and I wanted to but dammit, I was in pain, tired all the time, I was always sad, angry and I needed him with me.

I didn’t have a support system.

Whenever I spoke to other people, I heard comments like, I don’t look sick, or Lupus was just a trait, or just calm down, etc…what they didn’t understand is that the disease was beyond my control!

The weight gain and the hair loss; my older kids were in disarray, my husband worked all the time and I was stressed and in pain.

Oh, and the memory loss. Imagine staying up to study all night, then falling asleep and waking up and you can only remember half of what you studied. As I put these words on paper, I feel this pain again in my throat.

I still feel so bad for what I put my family through.

I had no idea what chemical depression was or how to treat it, maybe because I never realized the symptoms–I was just angry and frustrated all the time so those close to me just wrote me off as a “bitch” and did not notice that my behavior was totally out of character.

My husband often called me impulsive and said I needed to calm down but honestly, I couldn’t help myself. In my mind, I was going to die soon, there is no cure for this horrible disease and I want to be happy now, even if it’s for a little while—and thus, I made bad decisions.

Lupus and the onset of chemical depression made me lonely, depressed, lazy and by my own definition, ugly.

I often contemplated suicide but resisted, so I did the next worst thing, I became reckless and ultimately, pushed my heartbeat away.

Now, I won’t take full responsibility for the demise of my marriage—one of us needed to be the strong one and we failed, but I do own my part for the dumb decisions I made.

I now recognize I was depressed for many years and it went untreated because simply put, I became good at painting on a smile for the world to see and wiping away tears before anyone noticed. We eventually got pregnant with twins and in the midst—I developed postpartum depression on top of what I was dealing with and that made matters worse.

I found myself making more dumb decisions and then neglecting my family. It was like I didn’t want to be bothered. I had a separate life outside of them. I found myself in treacherous situations because of my failed attempts to find love and support.

I finally decided to get help and what I learned about chemical depression is it’s a chemical imbalance due to the medication as well as the abrupt lifestyle change from dealing with a chronic illness.

My doctor commended me on controlling it so well for many years without treatment. I appreciate her commending me but I lost my best friend in the midst of this emotional roller coaster.

Today, I am a much better person, I love my family and children more than anything and I think I’m ready to find love again – who knows?

The morale of the story is educating yourself on Chemical Depression is very critical not only for the victim but for the support system as well. If you or someone you know are suffering from the symptoms of depression, please get help immediately.

I lost my best friend and soul mate while battling this disease, if I could turn back the hands of time, I would have gotten help sooner and ultimately I would have my marriage.

My advice to those who suffer, please don’t push your support system away, you need them as much as they need you.

I sincerely apologize to my ex-husband and kids for what I sent them through. I love them so much and I am working diligently everyday to fill that hole I created with my family and to rebuild that friendship with a man I once called my soul mate.

For more on Nikita and her journey, click here.

The whole world celebrates this article: discover the cure for Lupus.

Lupus is a chronic autoimmune disease that can damage any part of the body, from the skin to the joints through the organs. It is a disease that acts by outbreaks and then seems to disappear before returning again.

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But researchers say they have discovered that by using a combination of two drugs already exist, it is possible to reverse the effects of lupus in mice.

In a new study published in Science Translational Medicine, researchers at the University of Florida, Gainesville, have discovered that by inhibiting certain metabolic pathways in immune cells that can fight lupus in mice. Researchers at UF Health may have found a way to control lupus changing the way the immune system cells use energy.
“The most surprising result of this study was that the combination of the two metabolic inhibitors were needed to reverse the disease.” Dr. Laurence Morel, University of Florida College of Medicine

Systemic lupus erythematosus or lupus, is an autoimmune disease in which the immune system that is supposed to protect the body against foreign invaders – attacks the body’s own tissues, causing inflammation. Lupus can sometimes have symptoms similar to arthritis.
One of the markers of lupus are CD4 T cells (white blood cells that activate other immune cells). For people with lupus, the metabolism of T cells is overactive. T cells activated involve hyper- increased inflammation, and this means more physical damage. When researchers blocked glucose metabolism by using an inhibitor of glucose, metformin (common treatment in type 2 diabetes), CD4 T cells return to normal activity (metabolism CD4 slows down) and lupus symptoms were reversed. “If the T cell is normal, the disease gets better,” Morel said.
The research team initially had the idea of using a two-pronged attack on lupus after seeing a similar approach in research in cancer, said Dr. Laurence Morel, director of experimental pathology and professor of pathology, immunology and medicine laboratory in the UF College of Medicine.
“If it works to limit the metabolism of cancer cells, should work to limit metabolism in T cells,” said Dr.Morel.
The efficacy of metformin in restoring normal function of T cells when studied in the laboratory is also bode well for potential future application for the treatment of patients with lupus.
“That suggests that metabolic inhibitors can also be used to treat patients,” Morel said. “It’s the first time has shown that it can have an effect on the symptoms and manifestation of lupus by normalization of cellular metabolism.”
The two used in research in this study drugs were shown to inhibit the metabolic pathways before, but the combination seems to be the key to success.
“The most surprising result of this study was that the combination of the two metabolic inhibitors were needed to reverse the disease, when they could have predicted, based on models published by other people that one would work,” said study co-author ,
Dr.Laurence Morel, director of experimental pathology and professor of pathology, immunology and laboratory medicine at the University of Florida College of Medicine.
Among other researchers who worked on the project are: Dr. Eric S. Sobel, associate professor of rheumatology and clinical immunology professor; Dr. Byron P. Croker, a professor of renal and surgical pathology; and Dr. Todd Brusko, assistant professor in the UF Diabetes Institute, department of pathology, immunology and medical laboratory.
Their research was funded by grants from the National Institutes of Health and the Alliance for Lupus Research. The human trial will be made in September 2015, favorable results are expected since the tests in mice was a success

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Lupus Symptoms to Keep an Eye On & What to Do About Them

You may have heard of lupus, but do you know the most common lupus symptoms to look out for? You should, because this autoimmune disease affects at least 1.5 million Americans and more than 5 million people worldwide.

Even more alarming, more than 16,000 new cases of lupus are reported each year in the U.S. alone. This is especially serious for women, particularly those who are young to middle-aged women of childbearing age, because about 90 percent of lupus patients are women.

The good news is if you identify lupus symptoms early enough, you can prevent ornaturally treat lupus. So what is lupus exactly and what are the symptoms of lupus you need to be aware of? Read on to find out.


What Is Lupus?

Lupus is a type of chronic autoimmune disorder that affects many different organs in the body, causing symptoms that impact nearly every aspect of someone’s life. For example, rashes, mood changes, chronic fatigue, headaches and bodily pains are all common lupus symptoms. Lupus affects many more women than men, but both sexes and people of all ages and ethnicities can develop lupus.

According to a report published in the Maedica Journal of Clinical Medicine, because lupus shares many symptoms with other illnesses — including thyroid disorders, fibromyalgia, adrenal fatigue, Lyme disease or other autoimmune disorders — it can be hard for patients to receive a proper diagnosis of lupus.

Some experts have even nicknamed lupus “the great imitator” because lupus symptoms are often confused with various other health problems, often leading to a long road of recovery for patients. Most people with lupus are diagnosed in their 20s or 30s, sometimes after years of “not feeling right” and visiting many different practitioners for tests.

Lupus is an autoimmune disease because it’s a problem of the immune system. It’s caused by a combination of genetic and lifestyle factors, but having a family history is not a guarantee for developing lupus, nor is it contagious. Symptoms of lupus vary from mild to life-threatening, often coming and going based on other events in someone’s life.

Although it’s a chronic disease that poses serious risks, a lot of people with lupus can manage their disorder well with treatment and are able to carry on mostly normal lives. Today, lupus is treated with conventional medications — including immunosuppressant drugs and anti-inflammatory medications — but can also be managed naturally with alternative treatments, such as herbs, chiropractic adjustments, massage therapy,meditation and a nutrient-dense diet.


Lupus Symptoms & Warning Signs

Lupus affects every person differently, and there are a wide range of symptoms that can be attributed to the disease. There are two kinds of lupus that cause different sets of lupus symptoms: discoid lupus erythematosus (DLE) and systemic lupus erythematosus (SLE). DLE mainly affects skin is usually triggered by exposure to sunlight that causes skin lesions. But DLE usually doesn’t damage internal organs or glands like the other form of lupus does. SLE, on the other hand, affects the entire body and is more serious.

Certain lupus symptoms are usually only temporary (like skin rashes on the face), while others can be persistent and cause serious complications (like joint pain or ongoing fatigue). Lupus is considered to be a chronic autoimmune disorder because symptoms tend to last longer than six weeks and often for many years, unlike other autoimmune disorders that might go away more easily with lifestyle changes, such as Hashitmoto’s disease.

Although it’s much more common in women, lupus symptoms in women and men are usually the same. However, anyone with lupus who experiences high amounts of stress is more likely to experience worsened lupus symptoms due to having lower immune function. The majority of people who suffer from lupus experience episodes or “flare-ups” and remission.

The Molly Fund For Fighting Lupus describes lupus symptoms as “very unpredictable” and says that flare-ups can be mild to severe.

Symptoms tend to become worse for a period of time but then go away afterward, only to come back at a later time. Because lupus symptoms are always coming and going, especially in response to stressful events, this is another reason lupus is difficult to recognize and diagnose.

 

Lupus facts and numbers - Dr. Axe

 

According to the Lupus Foundation, the most common signs and symptoms of lupus include: 

  • Fatigue and lethargy: Approximately 90 percent of all people with lupus experience some level of fatigue, according to the Johns Hopkins Lupus Center. This can make it hard to work, exercise, take care of a family and keep up with everyday demands.
  • Frequent high temperatures (fever): Having recoccurring low-grade fevers around 99–101 degrees Fahrenheit is one of the earliest signs of lupus and could be a sign of inflammation or infection.
  • Muscle or joint pain: Stiffness and swelling can occur around certain affected joints or muscles. Certain joints might also appear red, inflamed and warm, and pain might get worse when moving.
  • Poor circulation in extremities (fingers and toes): This is known as Raynaud’s phenomenon and causes fingers and toes to turn white or blue for a short period of time.
  • Skin rashes: This includes a rash on the face that covers the cheeks and bridge of the nose. Estimates show that about 50 percent of people with lupus experience a butterfly-shaped facial rash, hives and photosensitivity. Redness, peeling and itchiness can sometimes develop. Some people also develop lesions on their skin about the size of a coin called discoid lesions.
  • Sensitivity to sunlight: Many people with lupus easily become sun-burned, develop skin lesions and have skin itchiness caused by sun exposure.
  • Easily becoming short of breath and having chest pains: It’s common with lupus to experience pulmonary and respiratory problems since the lungs and airways can become inflamed due to swelling. Pleuritic chest pains are a symptom caused by inflammation of the diaphragm and swelling of the blood vessels around the lungs.
  • Anemia and abnormal blood clotting: This contributes to fatigue and other problems.
  • Fluid retention and swelling (edema): Swelling is especially common in the feet, legs, hands, and/or around eyes or face.
  • Dry eyes and blurred vision: Sjogren’s syndrome is sometimes triggered by lupus, which is a type of autoimmune disorder that affects the glands responsible for the production of tears and saliva. The eyes can feel gritty or dry due to lupus, and ulcers can also form inside the mouth or around the nose. Other people with lupus experience damaged blood vessels in their eyes and nerve damage that makes it hard to control movement of the eyes.
  • Digestive problems: This can include loss of appetite, heartburn, acid indigestion or other gastrointestinal problems. GI problems tend to get worse with stress and sometimes cause a loss of appetite and weight loss. Weight loss can occur in patients with active SLE, but some who take corticosteroid medications to fight the disease might start to gain a lot of weight unintentionally.
  • Trouble sleeping normally: Many people experience some level of insomnia, sometimes caused by sleeping too much during the daytime due to fatigue.
  • Hair loss or changes in hair texture: Due to scalp inflammation and irritation, hair can fall out by the clump or slowly. Facial or body hair might also fall out, including the eyebrows or eyelashes. Some people also experience brittle hair that breaks easily and won’t grow back.
  • Loss of libido: This can be due to stress, fatigue and hormonal changes. Lupus symptoms for women might also include vaginal dryness and irregular periods.
  • Headaches and mood changes: This includes cognitive impairments, such as brain fog, confusion and memory less.

Lupus Complications

Lupus is a serious illness and poses the risk for various complications if left untreated and unmanaged. Some complications associated with lupus can include:

  • Lung damage: A complication called vanishing (or shrinking) lung syndrome can develop when the diaphragmatic muscles become very weak and the lungs literally start to shrivel up and move. This causes shortness of breath and higher susceptibility to infections.
  • Kidney damage: Nephritis is a type of kidney inflammation that develops when the kidneys cannot properly filter toxins and waste from the blood. This can cause swelling, high blood pressure, blood or dark colors in the urine, and pain above the kidneys.
  • Metabolic and thyroid disorders: Lupus raises the risk for autoimmune thyroid diseases, which can negatively impact someone’s metabolism, menstrual cycle or hormone levels, weight, heart, skin, kidneys, and liver. Symptoms can vary a lot since some people with lupus experience an underactive thyroid (hypothyroidism) while others have an overactive thyroid (hyperthyroidism).
  • Connective tissue and nerve damage (known as neuropathy): Lupus is capable of causing damage to the spinal cord and brain, which affects nerve signaling and also neurotransmitter production. This is one reason that people with lupus develop cognitive impairment, mood changes, and even seizures or stroke. Studies have found that people with lupus are also more likely to deal with the effects of anxiety and depression due to a complex combination of biochemical abnormalities that affect different parts of the brain.
  • A higher risk for heart disease: Long-term inflammation caused by lupus can damage the heart, blood vessels and tissue surrounding the heart.

Lupus Facts & Numbers

  • The Lupus Foundation of America reports that at least 1.5 million Americans have lupus (and more than 5 million people throughout the world). This number might even be much higher, but it’s a hard disorder to diagnose and large studies/surveys reporting the prevalence rate have not been conducted.
  • Every year in the U.S alone more than 16,000 new cases of lupus are reported.
  • Women are most likely to develop lupus, especially young to middle-aged women of “childbearing age” (between the ages of about 15–44). About 90 percent of all lupus patients are women. (9) Pregnancy, menopause and hormonal changes can all contribute to lupus.
  • Men, children, older women and teenagers can also develop lupus, especially if they’re African-American, Asian or Native American. People of these ethnicities are believed to be two to three times more likely to develop lupus than Caucasians.

Lupus vs. Lyme Disease: How Are They Related and Different?

Lupus shares many symptoms with Lyme Disease — not to mention other common health problems caused by inflammation and autoimmune reactions like rheumatoid arthritis, blood disorders and diabetes. Symptoms that Lyme disease and lupus have in common include fatigue, heart palpitations, kidney damage, skin rashes, nerve damage, joint pain, and higher risk for other problems like depression and heart complications. Doctors often confuse these two illnesses initially and are careful to track symptoms over time in order to be able to tell them apart, which is very important considering they have different causes and treatment approaches.

While lupus is an autoimmune disorder that can develop over time, Lyme disease is caused by an inflammatory response that’s triggered initially due to a tick bite. The exact way that Lyme disease progresses is controversial and still under a lot of debate. The Centers for Disease Control and Prevention states that there are around 20,000 new cases of Lyme disease identified each year in the U.S. alone, especially during the summer when tick bites are more common.

Both Lyme disease and lupus cause skin rashes for many people, although the two usually appear differently on the skin. A “butterfly rash” on the face is most common with lupus, while a “bull’s-eye” rash ( called erythema migrans) is more common with Lyme disease.

Kidney malfunction and damage is another shared symptom along with electrolyte imbalances, dizziness, weakness, changes in urine and dehydration.

One serious complication that can occur due to both disorders is atrioventricular block, which is caused by a dangerous blockage in heart vessels and sometimes reoccurring heart palpitations and blood pressure problems. In patients with lupus, atrioventricular block is normally triggered by electrolyte imbalances and kidney malfunctioning, while in Lyme disease patients it’s caused by inflammation of the heart.

Atrioventricular block (also called AV block) results in inflammation of the atria and ventricles of the heart, changing the way nerve impulses travel to and from the heart (similar to atrial fibrillation). Sometimes atrioventricular block goes away on its own, but other times it can lead to permanent damage that triggers other heart problems and requires a pacemaker or other interventions to control.

As you’ll learn below, just like with lupus, treating Lyme disease naturally involves boosting immune function, lowering bacterial infections, and treating toxicity, gut problems and inflammation.

 

Lupus vs. Lyme disease - Dr. Axe

 


Natural Lupus Treatments

Some of the ways you can help prevent and treat lupus naturally include:

1. Preventing Nutrient Deficiencies

Nutrient deficiencies lower immune function, can contribute to fatigue, and make you more susceptible to illnesses like viruses and infections. People with lupus should make it a priority to eat a well-rounded, unprocessed diet in order to maintain a healthy body weight, keep blood pressure levels within a healthy range, control cholesterol and prevent fatigue.

Some of the best foods for managing lupus symptoms include fresh vegetables and fruit; sources of omega-3 fats like wild-caught salmon; nuts and seeds; coconut oil; bone broth; and lean sources of protein. One specific food that people with lupus should avoid is alfalfa seeds and alfalfa sprouts, since certain compounds in alfalfa have been shown to trigger the immune system.

2. Getting Enough Rest, Relaxation and Sleep

High amounts of stress can weaken the immune system and cause hormonal changes that lead to inflammation. Stress also makes fatigue worse and interferes with sleep. Managing stress and getting enough sleep are very important for controlling lupus symptoms because lupus patients are already at a heightened risk for depression, anxiety, confusion and memory loss.

Sleeping for at least eight to nine hours daily and reducing stress through meditation,healing prayer, therapy, exercise, yoga or tai chi, creative projects, and time spent outdoors can also help.

3. Avoiding Smoking &=and Toxicity Exposure

Smoking increases lung damage and also raises the risks for lupus complications like heart disease, stroke and infections. Cigarettes can also impair immunity, slow down blood flow, raise blood pressure levels and worsen skin inflammation.

Other chemical toxins that contribute to lupus and worsen inflammation include trichloroethylene (found in unfiltered water and sometimes dust), endocrine disruptors, and chemicals from household or beauty products, such as paints, hair products and dyes.

4. Staying Active

Exercise is important for people with lupus because it helps keep joints flexible, makes the heart and lungs stronger, helps raise immune function, and controls tress. Since many people with lupus experience muscle and joint pains on top of intense fatigue, low-impact activities like walking, cycling, swimming, yoga, dancing, water aerobics and Pilates are all good choices for activities.

5. Protecting Your Skin

Lupus can be triggered by sun exposure and also causes skin to become extra fragile and vulnerable to burns and sun damage. Make sure to protect your skin from sunburns by staying out of the sun during the brightest hours of the day, using non-toxic sunscreen with a sun protection factor of 50 or higher, wearing sunglasses, and wearing a hat. Natural products should also be used on the skin that won’t worsen inflammation and irritation, instead of beauty products with synthetic ingredients and chemicals.


What Causes Lupus?

Although the exact cause of lupus isn’t known, experts know that lupus is triggered by abnormal changes in someone’s immune system. Like other autoimmune disorders, the immune systems of people with lupus are mistakenly triggered into fighting healthy tissue and cells within the body because of the false impression that the body is being threatened.

When the immune system thinks that it’s under attack by viruses, bacteria, food allergens or germs, it produces antibody proteins to help fight off the foreign invaders, but these proteins also damage healthy tissue in the process. This causes inflammation and damage to various body parts, along with numerous symptoms. Some of the glands, organs and tissues damaged by lupus include the thyroid gland, heart, gut/digestive system, lungs and kidneys. The immune system can produce numerous auto-antibodies that contribute to lupus, especially one type called antinuclear antibodies.

Genetics play a role in the development in lupus, and experts think that certain people are born with genes that impact the way their immune systems work, making them more susceptible to getting lupus. Other risk factors for lupus include:

  • taking certain medicines that affect the immune system
  • toxicity and exposure to chemicals
  • poor gut health and leaky gut syndrome
  • nutrient deficiences
  • allergies
  • smoking cigarettes
  • a history of infections
  • high levels of stress that wear down the immune system
  • hormonal imbalances, such as estrogen dominance
  • pregnancy

Key Takeaways About Lupus Symptoms

  • Lupus is an autoimmune disorder that causes varied symptoms, including fatigue, swelling, joint pain, headaches, nerve damage and skin rashes.
  • Lupus doesn’t have one single cause but is triggered by a combination of factors, including genetic inheritance, inflammation, a poor diet, poor gut health, toxicity and stressful life episodes.
  • Natural treatments for lupus include eating an anti-inflammatory diet, resolving nutrient deficiencies and allergies, controlling stress, exercising, and protecting the skin from too much sun exposure.

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30 Facts About My Invisible Illness (Lupus) You May Not Know: Term Life

Many prominent bloggers were asked to participate in this simple blog post meme to help spread awareness during Invisible Awareness Week (September 11-18th) I think it is important to participate in these things because as much as this website, my speaking and writing have brought me into the public eye, there is still so much even my closest friends and family do not know. That unfortunately is the “nature of the beast” with chronic invisible illness.

Christine

30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Many people think I only have lupus, but as I usually say “Lupus never comes to the party alone” and I also live with Fibromyalgia, Sjogrens Syndrome, and Raynauds.
2. I was diagnosed with it in the year: I was diagnosed in 1992, I was a teenager when I was diagnosed.

3. But I had symptoms since: I can remember having symptoms as young as 12. I was always tired, unexplainable fevers, aches and pains etc

4. The biggest adjustment I’ve had to make is: learning to say “no”. Learning that I do have limits and I have to take care of myself. If you don’t have your health, nothing else matters.

5. Most people assume: that I am a happy, upbeat person because of the writings and advice on my website, or because of seeing me speak. I am that person but that is only one layer. I do hurt, I do cry and I do have hard times when dealing with my illness. I am human and have a full range of emotions. I think living with any chronic illness comes with highs and lows, days when you are strong, and days when you need strength.

6. The hardest part about mornings are: just getting moving at first. I feel like “the tin man” from The Wizard of Oz. I am achy and very tired. It would be easy to just go back to bed, but I have a beautiful 4 year old that makes it impossible. I love sharing mornings with her and she is my motivation. I also have to remind myself that once I get moving, even a little bit, the pain and stiffness will get better.

7. My favorite medical TV show is: House of course! I always loved the show from day one, even before it became the cult classic amongst us Lupus patients. I love trying to figure out the diagnosis. I figure over 18 years of being a patient should earn me a medical degree! I am waiting for the episode where the whole episode is an actual lupus patient and not just a “throw away” line in the script.

8. A gadget I couldn’t live without is: I could never live without my microwave heating pads. The moist heat is perfect for my sore muscles and it is quick and easy. I love gadgets of all kinds but I guess I am answering as far as health is concerned. But my favorite overall gadget is my Ipad. It keeps me connected to the butyoudontlooksick.com community and my family and friends even if I am stuck inside, on the couch, traveling, or in bed!

9. The hardest part about nights are: Getting my body to wind down and relax. It is hard to not want to try and stay up late and get “more accomplished”. It is so easy to always feel so behind when you have a chronic illness and can’t do it all. I have learned though that if I use up all my “spoons” today trying to get everything done with every last drop of energy that I have, then many times I will be paying for it tomorrow. So learning when enough is enough and when it is time to just go to bed has been the hardest part of my night.

10. Each day I take 17 pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: I believe that anything that helps you feel good and doesn’t hurt yourself or others is ok. I believe you need to make smart educated decisions, but in the end the decisions are yours to make. I also believe that in the end there are so many factors that go into our healthcare management why would we shut out any possibilities?

12. If I had to choose between an invisible illness or visible I would choose: I would choose to have an invisible illness. I am used to my illness being invisible, I have become good at advocating for myself and I have learned to cherish the days were my illness isn’t as obvious. If I am feeling well my health does not need to be everyone’s business, the down side is of course that when I am in pain, or fatigue etc I do need to ask for help which can be the hardest thing in the world.

13. Regarding working and career: When your passion becomes your purpose there is nothing you can’t do. We might think we choose our work, or career but I do believe that god knows what is best for us and finds a way to put us in that path. What I wanted to be, would have never been right and what I have become is more then perfect.

14. People would be surprised to know: That I actually can be very shy. I get bad anxiety and I even have stage fright sometimes. I know it is hard to believe since I put my life out on the internet, speak in public often and even have stripped down to pajamas on stage in front of hundreds… but yes before I do any of those things I am a nervous wreck!

15. The hardest thing to accept about my new reality has been: The unknown. Not knowing when my next flare might be, or not knowing if the next cold can become a hospitalization. Not knowing how long this remission will last. Will I feel good for a long time? Not being being able to make plans. Not having enough energy to achieve all the dreams my crazy heart has dreamt up.

16. Something I never thought I could do with my illness that I did was: I never thought I could help my own life with Lupus let alone many others. I am honored, humbled and rejuvenated whenever someone likes something I wrote, claps for something I say, passes on an essay, follows me on twitter, or even “likes” butyoudontlooksick.com on facebook. I truly spent much of my early twenties trying to figure out what to do next, what to do after my diagnosis. What do you do when your career, your identity is ripped away from you? I knew I could talk, I knew I loved to write and I knew I was passionate about making life with lupus just a little bit better then it was when I was diagnosed. There was no big plan, there was no vision, just the desire for no one else to walk the path of living with an invisible illness alone. I knew doing something was better then doing nothing. But I never dreamed I could connect with people around the world. I never dreamed I could use technology to form a community of people who could help each other with tips, support, friendship and “spoons“.

17. The commercials about my illness: There are no commercials for Lupus. (my primary illness) It is still a very unknown and misunderstood illness. The journey of awareness has just begun.

18. Something I really miss doing since I was diagnosed is: Acting in community theater and dancing. I spent most of my young adult life in rehearsals and immersed in the theater life. I miss that creativity, I miss the sense of community.

19. It was really hard to have to give up: My independence. I am a very independent spirit. I am strong willed, maybe sometimes too strong. It has been very hard to learn to reach out and ask for help. There have been time when the help needed was obvious like pushing a wheelchair, but other times the help was not so obvious and I had to swallow my pride like when just asking to sit through an IV treatment just because I didn’t want to be lonely. Everyone assumes I am so strong that I can handle anything, but I know now that best choice is the hardest one. For me, the best choice has been learning to let my ego go, live honestly and to ask for help.

20. A new hobby I have taken up since my diagnosis is: I actually haven’t taken up any exciting new hobbies that I can think of right now. I would LOVE to learn more about photography since I love taking photos of my four year old daughter. I also would love to take yoga classes and learn more about meditation.

21. If I could have one day of feeling normal again I would: I would run the NYC marathon. I know it sounds crazy, but it is something that I always wanted to do, but always knew was out of my reach due to my illness. One of my secret little dreams. Maybe I shuld start with a run around the block?

22. My illness has taught me: Who my real friends and family are. The people who support you every day, for better or for worse…. in sickness and in health those are the people who truly love you. If you want to know who your real friends and family are, get sick and see who stays.

23. Want to know a secret? One thing people say that gets under my skin is: I hate when people say “Oh, I know what you have been through”, or “I know how you feel”. The sentence usually starts with those words and ends with a tale of a broken leg, or a bad back, or a particular horrible flu. Try having them all at once- every day, then tell me you know how I feel.

24. But I love it when people: I love when people offer to help without asking. I love when friends and family offer real help, flowers are sweet but they die quick. Some of the best gifts, or help have been when my mother has done my laundry without asking, when friends drive me to doctors appointments, or when I have received restaurant gift cards in the mail. Anything that helps save a bit of energy and gives me more time and energy to focus on my health and my daughter is the best gift anyone can give.

25. My favorite motto, scripture, quote that gets me through tough times is: God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

26. When someone is diagnosed I’d like to tell them: It will be hard, but it will be ok. I tell them that they know their bodies best, they need to be their own advocates, and they need to be strong in spirit even if their bodies are weak.

27. Something that has surprised me about living with an illness is: I have actually watched medical advances happen in my lifetime with Lupus. The life of a lupus patient has drastically changed from the time I was diagnosed until today. There is still so much work to be done, but it has been surprising to actually see and live these medical advancements and breakthroughs.

28. The nicest thing someone did for me when I wasn’t feeling well was: My parents love is endless and has no boundaries. They do nice things constantly, too many to mention or count. But knowing I can count on them is the nicest feeling in the world.

29. I’m involved with Invisible Illness Week because: If all of us do our part, write a blog post, re tweet this post, share on facebook, pass on info.. whatever. Each step is a step closer to awareness, understanding and acceptance. It is the easiest thing we can do, but collectively will make a difference.

30. The fact that you read this list makes me feel: loved. grateful. hopeful.

source

How to Treat Lupus

Lupus is a chronic disease that causes inflammation in the joints, kidneys, skin, heart, lungs, and blood cells. Lupus is an autoimmune disease—meaning it’s caused by your immune system attacking your own healthy cells, tissues, and organs. The precise cause of lupus is unknown, though genetics are thought to play a factor. There is not yet a cure for lupus. However, a variety of treatment options exist. When used effectively, these treatments generally allow a lupus sufferer to live a life similar in length and quality to that of a non-sufferer.

Method1

Treating Symptoms at Home

Image titled Treat Lupus Step 1

1
Take over-the-counter (OTC) pain relievers. Aspirin and non-steroidal anti-inflammatory drugs (NSAIDs) such as naproxen sodium and ibuprofen can help reduce the pain and inflammation from mild lupus symptoms.[2][3] As an added benefit, these drugs can also alleviate other symptoms of lupus, such as fever and arthritic pains.

  • Though these drugs are a cheap and convenient temporary solution to lupus flareups, they shouldn’t be used as a permanent “fix.” Long-term and/or high-dosage NSAID use can cause stomach and kidney damage.[4]
  • Consult your doctor before starting even this relatively mild treatment option, as some NSAIDs (especially ibuprofen) have been linked to life-threatening infections like meningitis in people with lupus
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  • Image titled Treat Lupus Step 3
  • 3
    Protect yourself from other infections. Since lupus affects your immune system, you should shield yourself against infections.[7] Keep up with annual flu and pneumonia vaccinations, and take other precautions such as not sharing glasses/utensils and washing your hands often with warm, soapy water.
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  • 4
    Get plenty of rest. Fatigue is a common symptom of lupus, making an adequate amount of sleep essential for optimum health. Get a full eight hours of sleep each night.[8] If you suffer from insomnia, try to create ideal sleeping conditions by sleeping in a cool, dark, quiet environment. You should also try to engage in a relaxing activity before bed that doesn’t involve a TV or computer screen.

    • Adequate sleep can also help bolster your immune system against other opportunistic infections.
    • You may also need to take short breaks or naps during the day when feasible.[9]Listen to your body and don’t get frustrated with your need to rest.
    • You can find more information at How to Fall Asleep
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    • 5
      Exercise regularly. Physical exercise helps to reduce the risk of cardiovascular disease (which is a serious concern for lupus patients), and it also combats depression. Additionally, exercise has proven effective at helping those with lupus recover from a flareup.[10]

      • The American Heart Association suggests thirty minutes of moderate cardio five days a week, but don’t push yourself too hard. This can be anything that gets your heart rate up—from brisk walking to playing sports
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      • 6
        Do not smoke. Smoking puts you at a higher risk of stroke, heart attack, and other cardiovascular conditions, the risk of which is already elevated for lupus patients.[12]Smoking can also complicate the effects of lupus on your heart, lungs, and blood vessels.
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      • 7
        Eat a nutritious diet. A healthy diet will boost your immune system, as well as helping to limit kidney and gastrointestinal complications related to lupus.[14] Choose options rich in fruits, vegetables, legumes, whole grains, and lean meat protein.

        • Avoid foods that appear to aggravate any gastrointestinal symptoms.
        • You can find more information on the staples of a healthy diet at How to Eat Healthy.
        • Method1

          EditTreating Symptoms at Home

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        • 8
          Build a support network. Lupus patients often suffer from chronic pain, which can sometimes be severe or even debilitating. Combined with the fact that lupus patients usually need to avoid sunlight, this can lead to isolation and depression for those with the disease. In addition to living a healthy lifestyle, it’s important to rely on your friends, family, and loved ones for support as you learn to live with lupus. The emotional benefits of a support circle can’t be overstated.[15]

          • Look into lupus support groups in your area as well. You may find sharing with those with firsthand knowledge of your condition beneficial
          • Method2

            EditSeeking Professional Help for Symptoms

          • Image titled Treat Lupus Step 9
          • 1
            See your physician often. Your doctor will have a variety of medication options available to help alleviate pain and other symptoms. Your doctor will also have general information on how to minimize flareups.[17] Keep regular appointments to help find the best medication (or combination of medications) for your specific symptoms. You should also see your doctor whenever you have a flare. Common symptoms involved with a lupus flareup include:[18]

            • Severe fatigue and fever
            • Pain, swelling, or stiffness in your joints
            • Chest pain
            • Confusion or memory loss
            • Shortness of breath
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            • 2
              Use corticosteroid medications. Corticosteroids (prednisone, cortisone, etc.) have anti-inflammatory properties. Corticosteroids fight the painful inflammation that can accompany lupus’s autoimmune response. Your doctor will want to monitor your use of corticosteroids because long-term use can lead to side effects such as:[19]

              • Weight gain
              • Susceptibility to bruising
              • Increased potential for infection
              • High blood pressure
              • Osteoporosis (bone thinning)
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              • 3
                Ask about antimalarial drugs. Your doctor may prescribe antimalarial drugs—hydroxychloroquine (Plaquenil) and chloroquine—in conjunction with corticosteroids or other medications. They most often treat lupus symptoms such as skin rashes, mouth ulcers, and joint pain.[20] These options can require long-term use to measure results, but side effects are typically mild. They include:[21]

                • Upset stomach and blurred vision (reduced by taking with food)
                • Insomnia
                • Anxiety
                • Dizziness
                • Retinal damage (in very rare cases)
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                • 4
                  Use immunosuppressive medications. Your doctor may prescribe immunosuppressive medicines—azathioprine (Imuran), leflunomide (Arava), and methotrexate (Trexall)—for serious cases.[22] However, your doctor will monitor the use of these drugs carefully since they reduce your body’s ability to fight off other infections. Side effects include:[23]

                  • Increased risk of infection
                  • Damage to your liver
                  • Decreased fertility
                  • Higher risk of cancer
                  • A newer medication in this class—belimumab (Benlysta)—also helps relieve lupus symptoms in some cases. Benefits of the drug include less severe side effects, often limited to nausea, diarrhea, and fever
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                  • 5
                    Take intravenous immunoglobulin (IVGs). Immunoglobulin is a term for a body’s natural antibodies, which, under normal conditions, help fight disease and infection. In IVG therapy, antibodies are isolated from another person’s donated blood, then injected into your body intravenously (through a vein). IVG can boost a person’s immune function without increasing the autoimmune response that causes lupus symptoms[25]

                    • Due to an expensive, time-consuming delivery process, your doctor will only prescribe this option in severe cases.
                    • Image titled Treat Lupus Step 14
                      6
                      Take anticoagulants to prevent blood clotting. People with lupus are more likely to suffer from blood clots. If a blood clot occurs in a deep vein, in the heart, or in the brain, it can cause potentially life-threatening conditions such as deep-vein thrombosis, heart attack, or stroke. Your doctor may prescribe anticoagulants to thin your blood if he or she decides that you are at a greater risk for blood clots.[26]

                      • The most serious side effects of blood thinners are increased susceptibility to bleeding and gangrene of the skin
                      • Image titled Treat Lupus Step 15
                      • 7
                        Consider more powerful painkillers. Sometimes, in severe cases of lupus, the pain can become too great for anti-inflammatory treatments to manage. In these cases, your doctor can prescribe powerful painkillers, usually opiates like oxycodone.
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                      • 8
                        Avoid certain types of medication. Some common medications can aggravate lupus symptoms. If you take one of these medications, work with your doctor to see if you can replace them with other medications or otherwise minimize their effects with regard to lupus. Some drugs that have negative interactions with lupus are:[28]

                        • Sulfa-containing antibiotics (sulfonamides)
                        • Hydralazine
                        • Procainamide
                        • Mynocycline
                        • Supplements that contain alfalfa
                        • Method3

                          EditTaking Vitamin and Herbal Supplements

                        • Image titled Treat Lupus Step 17
                        • 1
                          Take fish oil supplements. Initial studies have shown promise with an increase of the omega-3 fatty acids found in fish oil supplements.[29] Additionally, omega-3 fats are the “good” fats that can have a positive effect on your cholesterol and heart health.

                          • Common side effects include burping, nausea, and a lasting fish taste in your mouth
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                          • 2
                            Take dehydro-epiandro-sterone (DHEA) supplements. DHEA does not affect lupus directly, but studies have shown that it reduces the dosage of prescribed corticosteroids necessary to help stabilize symptoms
                          • Image titled Treat Lupus Step 19
                          • 3
                            Take vitamin D3. Those deficient in levels of vitamin D3 have shown to have more symptoms and flareups.[32] Taking a low daily dosage can help stabilize vitamin D levels and reduce flareups.
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                          • 4
                            Use turmeric. Turmeric has also been shown to reduce symptoms and flareups.[33]However, turmeric can interact with anticoagulant medications, so always consult your doctor before adding turmeric to your regimen.
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                          • 5
                            Try astragalus. Astragalus seems to reduce the activity of an overactive immune system, but more study is necessary.[35] Do not take this herb without first discussing it with your physician, especially if you take lithium or a medication to suppress your immune system.
                          • source

No More Lupus: At Last, a New Lupus Drug And Term Life

Really good news for people with lupus — the first new drug in 50 years has just been approved by the FDA.

In case you aren’t familiar with it, systemic lupus erythematosus (its formal name) is a type of autoimmune condition. Under normal circumstances, the immune system protects the body against bacteria and viruses. But in autoimmune disorders, the immune system mistakes parts of the person’s own body for foreign invaders.

Lupus can have wide-ranging and severe effects, because the immune system can attack and damage the skin, kidneys, lungs, brain, blood, heart, and joints. You can imagine that, with this many potential targets, lupus can wreak havoc. Patients with lupus (many of whom are young women) can have kidney failure, shortness of breath, severe skin rashes, arthritis-like joint disability, memory problems, and more.

But now along comes Benlysta (belimumab). It’s not a miracle drug, by a long shot. For example, it doesn’t seem to help African-American patients, which is disappointing, since African-Americans are more likely to have the condition than people of other races. Additionally, research studies showed Benlysta to have only a 43 percent symptom reduction rate, compared with 34 percent for placebo. Still, it’s one more weapon in a limited arsenal against the destructiveness of lupus. Some patients have noted that they could reduce their dependence on steroids for symptom management, which would definitely be a good thing, since steroids have significant side effects in chronic users (including bone fragility and weight gain).

One of the reasons people are celebrating this new drug is the idea that, once one company gains approval for a drug targeted against a specific disease, other companies often jump on the bandwagon in an effort to produce competitors. This kind of competition can only help lupus sufferers, who are long overdue for some good news.

The downside to the Benlysta story is the expense — currently about $35,000 per year. It’s given through an IV every 28 days. Predictions put the ultimate projected sales revenue at over $2 billion a year. This might spur competitors to come up with other medications to get a piece of that pot of gold. One can only hope.

source

HOW TO PREVENT HAIR LOSS FROM LUPUS : 6 STEPS

Lupus is an autoimmune disease where the body attacks itself. About half of all patients diagnosed with lupus experience hair loss. There are two types of hair loss associated with lupus. One is caused by the disease, and the other is caused by medication. Though some hair loss is unavoidable, there are some steps you can take to largely prevent it.

 Part1

Working With Your Doctor to Prevent Hair Loss

Image titled Prevent Hair Loss from Lupus Step 1

  1. Figure out whether your hair loss is happening as a result of your disease or your medications. Cutaneous lupus (lupus of the skin) can cause your hair to fall out. Alternatively, your hair loss may be a result of your medication, particularly if you are on a corticosteroid (like prednisone). Talk to your doctor to figure out which of these two reasons you’re experiencing hair loss (also known as alopecia).[1]
  2. Begin your lupus treatment immediately. If you have been diagnosed with cutaneous lupus (lupus of the skin), you may quickly begin losing hair because the damage that lupus does to your skin can change the normal function of your hair follicles. The sooner you begin your treatment, the sooner you can reverse hair loss.[2]

    • If you haven’t been diagnosed with lupus, but you have been losing hair, talk to your doctor about the possibility that you have lupus. There are lots of other reasons you could be losing hair (heredity, chemical hair treatments, thyroid issues, nutritional deficiencies, etc.), but if you’re concerned, see a doctor. Particularly if you’re also experiencing unexplained fevers, rashes, fingers and toes that turn blue in the cold, fatigue, and joint or muscle pain, there’s a decent chance that you have lupus.[3]
  3. Image titled Use Diet Pills Safely Step 1
    Talk to your doctor about changing your medication. If medication is what’s causing your hair loss, your doctor may be able to change your dose or put you on a different kind of medicine. Keep in mind that you might have to wait a little while to switch medications, though. Even though hair loss can be really unpleasant, it’s important to manage your disease.[4]
  4. Tell your doctor if you notice any scaliness or rashes. Check your face and scalp in particular. If there is anything round and scaly or anything that looks like a rash, you are at risk of permanent hair loss because of scarring. Your doctor may be able to prescribe medication or change your current medication to prevent this.
Part2

Avoiding Your Lupus Triggers

  1. Manage stress. Lupus tends to flare up when you are stressed, and flare-ups can cause your hair to fall out. The best way to manage your stress level is to get plenty of rest, keep your list of obligations to a minimum, and exercise often.[6]

    • You can also try relaxation techniques like meditation or yoga.
    • Remember that some people with lupus need up to 12 hours of sleep a night in order to manage their stress levels.
  2. Image titled Use Relaxation Techniques to Increase Fertility Step 6
    Stay out of the sun. About half of lupus patients get flare-ups as a result of photosensitivity.[7] If you have to be in the sun, wear lots of sunscreen, a hat that protects your face and neck, and long sleeves and pants. Even if it’s cloudy out, when you have to be outside for extended periods, protect your skin. About 70% of ultraviolet rays can still sneak through cloud cover.[8]

    • The sun is especially potent between 10am and 4pm. Try to stay indoors during these hours if you can.
    • If you’re going to be out for more than a few minutes, put sunscreen on the parts of your body that are covered by clothing too. Most clothing only protects the skin up to SPF 5.[9]
    • Reapply often (about every 2 hours), especially if you sweat.
    • Don’t forget that UV rays can go through car windows as well. You may want to purchase window shades or protective films.
  3. Protect yourself from halogen or fluorescent lights. UV rays also come from indoor lighting, and they can cause lupus flare ups as well. Particularly if you work in an office that uses these kinds of lighting, you can protect yourself with shades, shields, filters, and tube covers. (Talk to your boss about whether your company might be willing to supply these items for you.)[11]

    • Don’t forget that many photocopy machines also emit UV rays. Close the cover when you’re using the copier to protect yourself from these rays.
    • source

No More Lupus: At Last, a New Lupus Drug :Term Life

Really good news for people with lupus — the first new drug in 50 years has just been approved by the FDA.

In case you aren’t familiar with it, systemic lupus erythematosus (its formal name) is a type of autoimmune condition. Under normal circumstances, the immune system protects the body against bacteria and viruses. But in autoimmune disorders, the immune system mistakes parts of the person’s own body for foreign invaders.

Lupus can have wide-ranging and severe effects, because the immune system can attack and damage the skin, kidneys, lungs, brain, blood, heart, and joints. You can imagine that, with this many potential targets, lupus can wreak havoc. Patients with lupus (many of whom are young women) can have kidney failure, shortness of breath, severe skin rashes, arthritis-like joint disability, memory problems, and more.

But now along comes Benlysta (belimumab). It’s not a miracle drug, by a long shot. For example, it doesn’t seem to help African-American patients, which is disappointing, since African-Americans are more likely to have the condition than people of other races. Additionally, research studies showed Benlysta to have only a 43 percent symptom reduction rate, compared with 34 percent for placebo. Still, it’s one more weapon in a limited arsenal against the destructiveness of lupus. Some patients have noted that they could reduce their dependence on steroids for symptom management, which would definitely be a good thing, since steroids have significant side effects in chronic users (including bone fragility and weight gain).

One of the reasons people are celebrating this new drug is the idea that, once one company gains approval for a drug targeted against a specific disease, other companies often jump on the bandwagon in an effort to produce competitors. This kind of competition can only help lupus sufferers, who are long overdue for some good news.

The downside to the Benlysta story is the expense — currently about $35,000 per year. It’s given through an IV every 28 days. Predictions put the ultimate projected sales revenue at over $2 billion a year. This might spur competitors to come up with other medications to get a piece of that pot of gold. One can only hope.

Source

The 12 Best Pieces of Non-Medical Advice People With Lupus Have Received And Term Life

By: Elisabeth Brentano

Lupus, or systemic lupus erythematosus (S.L.E.), is a chronic autoimmune disease that affects an estimated 1.5 million Americans and millions more worldwide.

Symptoms of lupus vary greatly, but they generally include fatigue, skin rashes, swollen and painful joints, unusual hair loss and a high fever. Some people with lupus develop kidney problems and others may be susceptible to premature heart disease, but there’s no single laboratory test that can determine if a person has lupus. Because symptoms come and go, it often takes years for a diagnosis to be made, and when one comes it’s joined with tons of medical jargon, stats and prescription instructions.

The Mighty teamed up with the S.L.E. Lupus Foundation to ask their community about the best non-medical advice about lupus they’ve received. Here’s what they had to say:

1. “Don’t fight the tiredness!” —Lisa Walker

african woman with laptop at office

2. “Get involved in a support group.” —Tonya Brown

3. “Never feel bad for saying ‘no’ to something.” —Meagan Burks

bad

4. “Listen to your body.” —Lesley Watkins

5. “With lupus you ‘don’t look sick’ so if a doctor doesn’t listen to your complaints or take you seriously, get another opinion. It’s your body and you know when something is wrong with it! Don’t let the doctors brush your symptoms off and make you feel like a hypochondriac.” —Tammy Wendt

Doctor scolding

6. “It’s good to take naps.” —Pamela Rich

7. “Do what you can when you can.” —Vanessa Johnson

whatyoucan

8. “Know your limits.” —Lucy Piccoletti

9. “You are not your disease. Do not allow it to overcome you or define who you are as a person. You are more than just your illness.” —Mary Rebecca Frazier

High angle view of a young woman lying down on a wooden platform

10. “Do not be afraid to change plans if you just can’t do it.” —Jen Laura Lopez

Young businesswoman using cell phone against cloudy sky

11. “My favorite advice has been, ‘Eat pure food, drink pure water, get enough rest, take gentle exercise, and most importantly keep a happy mind.’ This advice reminds me to be gentle, compassionate and wise towards myself.” —Chogma Kelsang

12. “Be kind to yourself and rest when your body is screaming out for some.” —Victoria Sinclair

kind

Source themighty.com

What Does Lupus Pain Feel Like And Term Life

Lupus is a chronic, see autoimmune disorder that causes inflammation of specific organs and/or tissues. Different patients are affected in different areas of their bodies, and symptoms vary. Asking what a disease with such breadth “feels like” is a little like asking “What does pain feel like?” It hurts! It’s unpleasant and you wish it would stop, shop but it affects everybody differently.

But…what does Lupus feel like? Perhaps the only way to answer this is to discuss areas of the body commonly affected by the disorder.

  • Joints – Lupus may attack the joints. In fact, the joints are often the area first attacked by lupus. Lupus joint pain tends to occur symmetrically – for instance, if the knees are affected, the pain will be experienced in both the left and the right knee. Affected joints may be warm to the touch and visibly red in addition to the pain. Fortunately, joint pain caused by lupus is usually not permanent.

  • Nails – Lupus may cause changes to the patient’s nails and fingers. The nails may begin cracking and/or falling off. Inflamed blood vessels in the nail beds may cause discoloration underneath the nails. The skin around the base of the nail may also become swollen and red.

  • Fatigue – Most lupus patients experience some form of fatigue. As with all lupus symptoms, there is a great deal of variety in severity. Some patients may experience only mild fatigue, whereas others may find the tired, run-down feeling severe enough to interfere with daily activities.

  • Sensitivity to the Sun – It is not entirely certain why some people develop lupus, but exposure to sunlight does appear to trigger symptoms in some patients. These patients may experience a skin rash when too much time is spent in the sunlight. As with most symptoms, severity may vary from person to person.

  • Raynaud’s Phenomenon – When a patient is exposed to cold or is enduring stress, blood vessels in the fingers or toes may spasm and restrict blood flow. This can result in pain, numbness, and tingling in the digits. This phenomenon may result in the fingers or toes appearing blue for the duration of the attack.

    Source pain.com