Lupus 3D Medical Animation

This 3D medical animation depicts how the immune system normally attacks foreign invaders, and its own body in an autoimmune disease such as lupus. Common symptoms and treatment options for lupus are also presented.

Just Keep Swimming!

Posted on ctlupus.wordpress.com/ by ctlupus

Swimming is for everyone! For lupus patients swimming offers a low impact workout that many cardio activities cannot. Swimming improves strength and fitness while being very gentle on the body. Water cushions stiff joints that are often injured by exercises on land. This is especially good news for lupus patients who struggle from joint pain. Swimming can improve your fitness and range of motion to relieve pain and stiffness, all while building strength.

When immersed in water up to your waist, your body is only bearing 50% of your body’s weight. At your chest, 25% to 35%, and your neck, only 10%.

If you are new to a swim workout it is recommended to take it slow and at a pace that is right for you. Our bodies are made for land not water, therefore it is easy to become frustrated. If you’re just starting out try swimming for 10 minutes and build up to 30. Walk the length of the pool or even use a kickboard if you’re not ready to swim underwater.

Try swimming and see if it works for you! Remember to start slow and always listen to your body!

About Lupus

Another name for lupus is also called: SLE, systemic lupus erythematosus Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years.

There is a bout 200,000 to 3 million US cases per year. so you are not alone.The good thing is that lupus is Medically manageableYou and your doctors can find medical treatments that can help or ease your symptoms.
In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues (“auto” means “self”) and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.

Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better).

These are some additional facts about lupus that you should know:

Lupus is not contagious, not even through sexual contact. You cannot “catch” lupus from someone or “give” lupus to someone.

Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease, as described above.

Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.

Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.

Some research estimates that at least 1.5 million Americans have lupus. The actual number may be higher; however, there have been no large-scale studies to show the actual number of people in the U.S. living with lupus.  More than 16,000 new cases of lupus are reported annually across the country.MIt is believed that 5 million people throughout the world have a form of lupus.

Lupus strikes mostly women of childbearing age (15-44). However, men, children, and teenagers develop lupus, too.. Most people will develop lupus between the ages of 15-44.

Women of color are two to three times more likely to develop lupus than Caucasians. People of all races and ethnic groups can develop lupus.

When you are diagnosed with lupus you will most likely have to change your Lifestyle. Such as if you are big on spending a lot of time outside in the middle of the day. You may need to make some changes. Such as going out more in the early morning and evening.

Sunscreen Will now be your new best friend. And your must have. You should apply sunscreen do any part of your body that will be exposed to the sun every day. Most people would only apply sunscreen in the summer. But those with lupus must wear Sunscreen year round. Because you skin is more sensitive  to the sun.. 

If you’re planning to go out during the middle of the day you should consider wearing  Sun protective clothing,  such as a large hat. To shaved your face.

Lupus can affect the joints, skin, kidneys, blood cells, brain, heart, and lungs.

Symptoms vary but can include fatigue, joint pain, rash, and fever. These can periodically get worse (flare up) and then improve.

Treatment includes a variety of medications such as steroids and disease-modifying antirheumatic drugs (DMARDs).

People may experience: Pain: in the muscles, can be sharp in the chest, can occur while breathing. Whole body: anemia, fatigue, fever, or malaise. Hair: hair loss or loss of scalp hair. Psychological: anxiety or major depression.  Skin: red rashes or scaly rashes. Mouth: dryness or ulcers.

Also common: acute episodes, blood in urine, face rash, headache, joint stiffness, raynaud’s syndrome, sensitivity to light, swelling, water retention, or weight loss

Ages affected 0-13 Very rare  – 14-18 Rare  19-40 Common 41-60 Common. Genders affected  Males Rare Females Common

Prescriptions : Antimalarial: Chloroquine Steroids: Methylprednisolone by injection (Solu-Medrol) or by mouth (Medrol), Prednisolone (Orapred) Other treatments: Cyclosporine, Hydroxychloroquine (Plaquenil), Methotrexate (Trexall), Belimumab by injection, Azathioprine (Imuran), Cyclophosphamide by injection or by mouth, Prednisone (Deltasone)

Specialists; Rheumatologist: Specializes in arthritis and other rheumatic diseases. Cardiologist: Specializes in heart disorders. Pulmonologist: Treats respiratory tract diseases. Nephrologist: Focuses on kidney disorders.

Weight Gain and Lupus.

Weight Gain and Lupus.  On ctlupus.wordpress.com

Many lupus patients are prescribed Prednisone, a steroid that calms the immune system. Unfortunately, Prednisone comes with some side effects that lead to weight gain. Many patients experience an increased appetite and fluid retention, which makes the face and other body parts appear puffy. Here are some tips to combat these side effects and avoid weight gain.

A Healthy Diet is Everything: For lupus patients when exercise can be difficult, a healthy diet is essential to keep your weight in check. Make sure you’re eating enough fruits and veggies and stick to low fat proteins such as fish and chicken.

Keep a Food Diary: Writing down what you eat every day makes you more aware of what you’re putting into your body. By doing so you are more likely to stick to your healthy choices!

Plan What You Eat: Since steroids increase appetite, avoid overeating by following a schedule. Plan what you eat in advance and focus on smaller meals 3 to 5 times a day.

Exercise if it’s Right for You: If you are able, exercise is also a vital part of any healthy diet. Talk with your doctor about a program that works for you.

My name is Chelsea Stark and this is my story.

My new invisible companion is Systemic Lupus Erythematosis. I was diagnosed with it in year: 20015. But I had symptoms since I was 13 years old. I went to the doctor quite a few times and their answer to my problem was not lupus but juvenile arthritis. And treated me as such. My mother my grandmother all had Lupus My mother kept pushing them to test me every year. They tested me I keep popping positive for five of the six markers. Was never all six. So I just kept on going on with my treatment of juvenile arthritis. But never got the relief I wanted or needed.

In 2015 I got extremely ill so I decided to try testing for Lupus again. To my husbands persistence. I went and asked to be tested for Lupus again. Believe it or not I was extremely grateful to get the diagnosis of Lupus. The doctor told me that he thinks that I got miss diagnosed that 15. He is fairly convinced that it was lupus and not juvenile arthritis. Apparently if the doctor doesn’t do the right testing it is hard to tell the difference between juvenile arthritis and lupus. I have been on the right medication for several months from my rheumatologist and feel much better. And now I am capable of walking longer distances without assistance. I was originally in a wheelchair, Walker and used a crutch for many years. When I got the right medicine for my rheumatologist that I have been meeting for years I was capable of doing so much more.

The biggest adjustment I’ve had to make is: avoiding UVA/UVB rays

Most people assume I’m NOT sick because I don’t often look sick.

The hardest part about mornings are joint stiffness.

A gadget I couldn’t live without is: sunscreen lotion

!The hardest part about nights is  joint pain.

Each day I take pills & vitamins. I would highly recommend those with lupus to take some of these vitamins. Vitamins: flax six day, Glucosamine 2 to 3 a day, vitamin A, B, C, D. I take these on a daily basis and they help me a whole lot. If anybody has any other vitamins they take that seemed to help them please share.

If I had to choose between an invisible illness or visible I would choose: NEITHER.

Regarding working and career: because i’m legally blind I am on permanent disability. So I was never able to work because of my vision loss.

People would be surprised to know how much sleep I require.  Believe it or not the commercials about Lupus really don’t tell the whole story. There’s just no substitute for doing research and talking to people with lupus.  The only visible sign that I have that shows I may have lupus to people is a butterfly rash on my face. Which Will appear more obvious when I am sick.

Something I really miss doing since I was diagnosed is basking in the warm sun.

Being outdoors on a regular basis. Is now something I am not able to do. I try to limit myself to first thing in the morning and in the evening. I do my best to not go out in the afternoon.

A new hobby I have taken up since my diagnosis is blogging. I have started several blogs. If I suddenly did not have lupus the first thing I would do is spend the day outside at the beach.

Of course with all illnesses you must learn patience. But I love it when people tell me they keep me in their prayers. It really helps.

When someone is diagnosed I’d like to tell them you are not alone.

Something that has surprised me about living with an illness is the isolation of living with a disease none of my friends have. The nicest thing someone did for me when I wasn’t feeling well was give me a hug.

Regarding alternative treatments I: wish I could afford acupuncture (because I haven’t tried it) and craniosacral therapy (because it really helps).

One of my favorite medical TV show is Mystery Diagnosis! I am a huge Star Trek fan and a sci-fi fan.

The fact that you read this post makes me feel I’m not alone. if you have Lupus in any form please reach out to me. And I want you to know you are not alone.

I have started  a blog titled Lupus My Invisible Companion. I would love to add a lot of people’s stories about living with Lupus been one big blog. And have suggestions on how to improve your life. Such as prescriptions, vitamins and exercises. I believe if we all work together we can help one another. And share our knowledge and educate people about Lupus.

Lupus-related pain is common, but there are medical and non-medical treatments that can help relieve your pain.

everydayhealth.com  by Pat F. Bass III, MD, MPH, and Farrokh Sohrabi, MD

 f you’ve been diagnosed with lupus, you will probably have to cope with lupus-related pain at some point in the course of your disease. Ninety percent of lupus patients experience some joint or muscle pain, commonly caused by inflammation of the joints.

 Lupus pain is different from other types of pain because its source and solution are often not that obvious. Lupus is a systemic disease, and pain symptoms, like other lupus symptoms, tend to wax and wane. Stress may also play a larger role in triggering pain related to lupus than it would for other conditions.
Types of Lupus Pain 

Pain can affect lupus patients in the following ways:

Arthritis. This type of swelling of the joints is common in lupus patients. Symptoms include pain, tenderness, stiffness, and warmth. Lupus usually causes arthritis in joints on both sides of the body and commonly affects fingers, wrists, elbows, knees, and toes. Stiffness is worse in the morning and gets better as the day goes on. Fibromyalgia. As many as 30 percent of lupus patients may also have fibromyalgia, a condition that causes chronic muscle and joint pain. The cause of fibromyalgia is not yet known but it can also lead to fatigue, joint and muscle pain, and stiffness.  Lupus myositis. Lupus patients can have inflammation of the muscles that move bones, called “skeletal muscles.” This can cause pain and muscle weakness.  Lupus headache. About 20 percent of people with lupus experience severe, migraine-like headaches.

Medical Treatments for Lupus Pain 

“Anti-inflammatory medications such as salicylates, NSAIDs, and corticosteroids help with pain and inflammation,” says Amita Bishnoi, MD, a rheumatologist at Henry Ford Hospital, in Detroit. Your doctor may recommend one or more of the following medicines to help you manage your lupus pain:

Non-steroidal anti-inflammatory drugs (NSAIDs). These are the most commonly used medications for lupus pain. They include aspirin, naproxen, and ibuprofen.

Antimalarials. Two types of antimalarial drugs, hydroxychloroquine and chloroquine, combined with other medications, may be used to treat joint pain. These drugs may also help prevent lupus flares.

Corticosteroids. These medications can be used to control severe arthritis and are considered the best drugs for treating pain caused by lupus myositis. Corticosteroids may also help control lupus headaches.

Belimumab. This drug was approved to treat people with active lupus in 2011. It is the first new drug approved for lupus since 1955. It may prevent lupus pain by preventing severe lupus flares.

A 2011 study published in the journal Annals of the Rheumatic Diseases, involving 1,684 patients with active lupus, compared belimumab plus standard therapy to standard therapy alone. The patients taking belimumab along with standard therapy had less disease activity than the other group.

Other Lupus Pain Management Options 

“Some patients who have chronic pain that is not responding to medications should consider consultation with a pain management specialist. Some non-medical treatments for pain can also be useful, including acupuncture, biofeedback, massage, and physical therapy,” advises Dr. Bishnoi. Moist heat may often help relieve joint or muscle pain. A moist heated towel, hot shower, hot bath, or whirlpool are some options. Other pain management options include:

Physical therapy. Physical and occupational therapy can help control lupus pain through exercises designed to keep muscles strong and to maintain the full motion of your joints. Physical therapy can also teach you ways to protect your joints from injury.

Mind-body techniques. These treatments take advantage of your mind’s ability to influence physical symptoms. Breathing exercises, relaxation training, and meditation are all good ways of lowering stress, which can be an important part of your pain management plan. Mind-body techniques that combine exercise and meditation, like tai chi and low-impact yoga, may also be helpful.

Massage. This treatment can be very relaxing and soothing, but it’s important to tell the massage therapist about your lupus diagnosis first. Ideally, the therapist should have experience working with lupus patients.

Acupuncture. This ancient treatment has been used for nearly 2,500 years to help people manage a variety of health ailments. The National Institutes of Health has concluded that acupuncture is effective in relieving many types of pain including pain related to fibromyalgia.

Keeps You From Working? 

If you have lupus-related pain that makes it hard for you to stay at your job, you need to know about your rights under the Americans With Disabilities Act (ADA). You are considered to have a lupus-related disability if your lupus symptoms cause one or more physical or mental impairments that substantially limit the major life activities you’re able to engage in.

Talk to your employer about your lupus. The ADA requires your employer to make reasonable adjustments to your work environment to accommodate your health needs, if possible. This may include restructuring your job duties, changing your work schedule, or finding a different position for you within the company. If you want more information on the ADA, go to the U.S. Department of Justice Americans With Disabilities Act Web page.

If you can no longer work — even with reasonable accommodations — you may need to consider filing for disability. There are two programs that may apply to your situation: The Social Security disability insurance program pays benefits if you have paid into Social Security long enough, and the Supplemental Security Income program pays benefits to disabled adults who have limited resources. Contact your local Social Security Office for help.

Even though 9 out of 10 lupus patients will have to cope with lupus-related pain, doctors have many options for managing it. Always let your doctor know when pain symptoms flare up. And if pain is making it hard for you to keep up at work, remember that you do have legal options and rights..

First Recipe of the Month! Originally posted on One Step At a Time:

First Recipe of the Month!

Posted on July 26, 2015 by Jules

Happy Sunday once again!

I’m adding a feature to my blog where I will post some of my favourite recipes every last Sunday of the month! A few weeks ago I decided to look into other things I can do along with my medications to try and get myself back on track and hopefully one day into remission. Among these things is the paleo diet that surprisingly, I haven’t had much of a hard time following! I know a lot of people with lupus try the paleo diet and believe that it impacts them very positively and I’m hoping to see the same results! I’ve found some very tasty recipes already and I’m excited to share them all with you!

This months recipe is a guacamole recipe I’ve become obsessed with. It’s your simple guac recipe but it’s tasty and not only does it follow the paleo diet, but avocados are also a great natural anti-imflammatory!

Ingredients:

• 4 large ripe avocados, pitted, scooped out and diced
• 1/4 cup minced fresh cilantro
• 4 cloves garlic, minced (I use 1 because I’m not a huge garlic fan)
• Juice from 1 lime
• 1 roma tomato
• Salt and pepper to taste
• Tortilla chips for serving (check to make sure they are gluten free!)

Instructions:

Place avocados, cilantro, garlic, tomato and lime juice in a medium bowl. Mash thoroughly until guacamole is the consistency you desire. Season guacamole with salt and pepper and serve with tortilla chips.

I use these chips for serving, they are organic, gluten free, low on sodium and absolutely delicious!

Much love,

Julia

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Bleed Purple For Lupus Awareness JULY 13, 2015 ~ JENNIEWHP

Bleed Purple For Lupus Awareness

JULY 13, 2015 ~ JENNIEWHP

Purple is an incredibly unique color. The most beautiful flowers in my opinion are a deep dark violet color. I had a purple wedding dress because I adore the color. How can you not? Purple isn’t just unique and beautiful it’s a symbol. It represents lupus awareness.This month is lupus awareness, so to show your support you could educate yourself and others about lupus and don’t forget to wear purple! 1.5 million Americans currently have Lupus. Lupus is an autoimmune disease that can possibly damage any of part of your body including skin, joints and organs. An autoimmune diseases suggest that your immune system does not know the difference between evil invaders and your healthy tissues. Generally, women ages 15-44 get lupus, but men,children, and teenagers can get lupus as well. Lupus symptoms can last for several years and it can be hard to diagnose as the symptoms mimic minor illnesses.

Lupus symptoms consist of:

• Fatigue
• Fever
• Joint Pain
• Stiffness
• Dry Eyes
• Headaches
• Butterfly-Shaped Rash On Face
• Fingers and Toes turn white or blue when exposed to cold or stressful periods
• Chest Pain
• Shortness of Breath

Can you imagine what it would be like to have a difficult to diagnose disease?  Ian Harding, the actor in Pretty Little Liars, tells us about his mother who has lupus. Mary Harding was diagnosed with lupus when Ian was six years old. Ian recalls the days when his mother’s hands swelled and how she contently wore hats in public to protect herself from the sun. In several interviews he explained that as a child, he did not understand Lupus, but understands it more now as an adult. Ian Harding has always supported his mother, and has been working with the Lupus Foundation of America for the last two years to raise awareness.  His mother would talk to her children about Lupus as it evolved in her life. Her children did not know until they were older that Lupus was possibly a fatal disease. Ian had a stronger emotional sense of the world than most of the children his age and his mother’s illness affected him greater because of it. His mother explained, “As a parent, I didn’t need to be the perfect mom, but wanted to be apart of it. I needed to show up and do the things I needed to do to raise the kids. I didn’t want my kids to grow up to think their mother was fragile.” Mary Harding did not let Lupus get in the way of being there for her family. Ian told an interviewer about his opinion on Lupus awareness and finding a cure, “I think with any chronic thing no matter how strong or strong willed you are, there comes a time you just wish it wasn’t there. The more I got involved in lupus foundation and see doctors speak on it, it feels like we are so close. I have this feeling that if we care about it a little more that would be the final push over the top.”

There are a variety of different medications that can help with signs of lupus disease. 

• Low Dose Naltrexone (LDN) is used to treat symptoms of lupus disease including fatigue, muscle pain, and joint pain. LDN helps the immune system, lowers the inflammation, and releases natural endorphins.

• Quinacrine is an Antimalarial medication used to treat lupus and rheumatoid arthritis symptoms. Quinacrine reduces inflammation and helps control skin rash in people who have lupus. This medication also may help releive muscle, joint pain, fatigue, and fever.

• Chloroquine is an Antimalarial medication used to treat Lupus and rheumatoid arthritis symptoms. This medication treats auto-immune diseases to help suppress over activity in the immune system and limits inflammation. It also helps reduce signs and symptoms of Lupus such as pain and swelling.

• Hydroxychlorquine is an Antimalarial medication used to treat symptoms of rheumatoid arthritis and lupus. This medication is used to decrease the symptoms of lupus. It helps relieve inflammation, swelling, stiffness, and joint pain.

These medications help lupus disease patients stay healthy and cope with their disease. If you are looking for these types of medications, or someone to speak with, the staff at Woodland Hills Pharmacy might be a good place to start!

Jennie-Your Undercover For Everything Pharmacy

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Remembering Marilyn Posted on July 31, 2015 by ctlupus

Remembering Marilyn

Posted on July 31, 2015 by ctlupus

Today, we remember an amazing woman and the founder of the Lupus Foundation of America, Connecticut Chapter, Marilyn Sousa. With her passion and determination, Marilyn dedicated her life to making a difference in the lives of so many suffering from the cruel mystery of lupus. On the one year anniversary of her passing we look back on her life of advocacy and remember her wonderful spirit!

Marilyn founded the Connecticut Chapter over 42 years ago. With its humble beginnings, Marilyn, a lupus patient herself, held small support group meetings in her living room. In May 1973, the Lupus Foundation of America, Connecticut Chapter was officially founded. Marilyn and her husband Gordon were also extremely influential in the founding of the Lupus Foundation as a national organization. She served on the Foundation’s national board of directors for many years and held several officer positions. In addition, she served as chair and liaison for our chapter’s Medical Scientific & Advisory Council.  Her dedication to the LFA from its founding up until her passing was remarkable.

Marilyn was best known for her work with the International Associated Groups Program, where she helped organize lupus groups around the world. In 2001, Lupus Canada recognized Marilyn for her assistance in helping establish their organization in 1986 by presenting her with the “Volunteer Recognition Award”.

The Lupus Foundation recognized Marilyn for her many years of dedication and service by honoring her with the Foundation’s highest honor, the Lifetime Achievement Award and the Summa Award. Additionally, the Foundation’s Board of Directors appointed Marilyn to be one of only two Lifetime Honorary Members of the Board.

These are just a few of the many awards Marilyn received for her civic and volunteer efforts. She received 16 national awards, including being named as a national finalist for the prestigious Jefferson Leadership Award. She also received the “Women Who Dare to Make a Difference” Award from the Council of Jewish Women, and the Leadership Council Award. She was recognized for her leadership in community medicine for her educational contributions.

Throughout her life, Marilyn offered support, encouragement, and guidance to patients and their families. Her beautiful spirit offered hope to the lupus community when it was needed most. She showed us that one person can make a difference- thank you Marilyn, we miss you!

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30 things about my invisible illness you may not know – 2011

By LupusRanting
1. The illness I live with is:  Systemic Lupus Erythematosis, Sjogren’s syndrome and autoimmune hypothyroidism2. I was diagnosed with it in the year:  19923. But I had symptoms since:  I was 9 years old4. The biggest adjustment I’ve had to make is:  avoiding UVA/UVB rays5. Most people assume:  I’m NOT sick because I don’t often look ill6. The hardest part about mornings are:   joint pain7. My favorite medical TV show is:   Mystery Diagnosis!8. A gadget I couldn’t live without is:   sunscreen lotion!9. The hardest part about nights are:   joint pain.10. Each day I take __ pills & vitamins. (No comments, please) 1411. Regarding alternative treatments I:  wish I could afford acupuncture (because I haven’t tried it) and craniosacral therapy (because it really helps)12. If I had to choose between an invisible illness or visible I would choose:  NEITHER!13. Regarding working and career:   I used to work full time but am now on disability14. People would be surprised to know:  how much sleep I require15. The hardest thing to accept about my new reality has been:  realizing that I can’t work full time, even if I want to.16. Something I never thought I could do with my illness that I did was:  travel.17. The commercials about my illness:   really don’t tell the whole story.18. Something I really miss doing since I was diagnosed is:   basking in the warm sun.19. It was really hard to have to give up:   being outdoors on a regular basis.20. A new hobby I have taken up since my diagnosis is:  designing and creating jewelry.21. If I could have one day of feeling normal again I would:  spend the day outside at a park.22. My illness has taught me:   patience.23. Want to know a secret? One thing people say that gets under my skin is:  “Have you every tried …..?”24. But I love it when people:   tell me they keep me in their prayers.  It really helps.25. My favorite motto, scripture, quote that gets me through tough times is:   When God closes a door, he opens a window.26. When someone is diagnosed I’d like to tell them:   you are not alone.27. Something that has surprised me about living with an illness is:   the isolation of living with a disease none of my friends have.28. The nicest thing someone did for me when I wasn’t feeling well was:   give me a hug.29. I’m involved with Invisible Illness Week because:   I have lupus.30. The fact that you read this list makes me feel:   I’m not alone.