Take Inventory: As the year begins to wind down it’s important to take inventory. What has worked for you? What has worked against you? Whatever it is you have to check the list and use what has helped you and leave what hasn’t been beneficial to you to the side.
In May for Lupus Awareness Month we were able to have a live candid conversation with Dr. Maggie Cadet. She gave us some great information and is our blog highlight for the day.
May was Lupus Awareness Month and I was honored to speak with @lupusincolor about this important autoimmune disease which can target so many organs.
This disease particularly is important to me because of the impact on women’s health and the Black community. The Lupus Foundation of America estimates that 1 in 250 African American women will develop lupus and Research has shown that Black, Asian and Hispanic patients may experience more complications the disease at a more rapid rate once a diagnosis is established.
It is my pleasure to educate all communities but particularly the Black and minority communities about this autoimmune disease so they may be equipped to take action and battle this disease. I am supporting Lupus warriors of all shapes, colors and sizes!
HERE ARE SOME COMMONLUPUS MYTHS:
MYTH #1: LUPUS only affects women?
TRUTH: Although 90% of individuals who are affected are females of minority populations, Lupus CAN affect males and many times the disease may be worse at diagnosis and may have kidney and skin involvement. Males need to be aware of symptoms so there is not a delay in diagnosis and treatment! Men can’t be afraid to seek help and ask questions about their symptoms if Lupus is a consideration as a diagnosis.
MYTH #2: There is a single type of lupus.
TRUTH: Lupus is an autoimmune disease that causes your immune system to produce proteins called auto antibodies to attack your own tissues and organs instead of a foreign agent or substance. Sometimes lupus can be limited to the skin only called cutaneous lupus. Lupus can affect babies/fetuses as well. There are 4 types of lupus:
1) Cutaneous (Skin) Lupus- You can have a purple or red rash or scarring lesions, hair loss or discoloration
2) Drug Induced lupus (DILE)- may be caused by certain medications such as hydralazine for high blood pressure, isoniazid for tuberculosis, minocycline (antibiotic, procainamide and quinidine (anti-arrhythmics), TNF inhibitors used for rheumatoid arthritis. Procainamide and hydralazine appear to have the highest risk for developing this type of lupus.
3) Neonatal lupus- Affects the newborn infants of women with lupus when certain antibodies in the blood (Ro/SSA and La/SSB antibodies) cross the placenta from mother to the fetus. It is rare but can present as a red rash or skin eruption, low white blood cells or platelets, liver disease and some may develop heart symptoms or congenital heart block.
MYTH #3: You can’t get pregnant or consider having a family if you have Lupus
TRUTH: Women CAN have a full term pregnancy but some may experience bouts of infertility or pregnancy related issues.. The processes that are involved in the immune response of females with Lupus patients are more at risk for
– Still births
– Preterm births
– C sections
There are resources for family planning which include The American College of Rheumatology (ACR) Reproductive Health guidelines and also the HOP-STEP website/program for Lupus patients which is found on line. There are medications that treat lupus that are also compatible with pregnancy like Plaquenil or Imuran. It is recommended that patients should try and be in remission or have low clinical disease activity for at least 6 months before considering pregnancy. Also, women should discuss birth control options with their physician until it is time to think about becoming pregnant.
MYTH#4: There is no overlap with Lupus and COVID-19
TRUTH: There may be an overlap in symptoms with Lupus and COVID-19 infection.
Patients with lupus may be at more risk for contracting the virus because of their already immunocompromised state and the medications these patients are on like steroids which may further suppress the immune system. Please call your doctor if you are experiencing the symptoms below.
Signs of Symptoms of SLE/Lupus flare
– Extreme fatigue
– Headaches, neurological symptoms
– Shortness of breath
– Hair loss
– Weight loss
– Joint pain, joint swelling and muscle aches
– Rash on face (butterfly rash, discoloration, scarring rash)
– Swollen glands
– Loss of appetite
– Chest pain
– Leg and facial swelling, foamy or dark or red urine- may indicate kidney disease
– New clots if associated with antiphospholipid syndrome
COVID-19 SYMPTOMS IN ADULTS
– Cough (dry)**
– Body aches
– Discoloration of feet (“COVID toes”), other rashes
– Sore throat
– Loss of taste and smell **
– Nausea and diarrhea
– Respiratory failure
– Blood clotting abnormalities
-No symptoms at all!!
A rheumatologist will have to do blood work, urinalysis, chest radiograph and assess symptoms to determine if further evaluation for COVID infection is needed. Currently investigation for optimal COVID treatment is still being conducted. Steroids and other immunosuppressants work for Lupus. Ironically a recent study conducted in the UK has shown Dexamethasone (orally or IV) to improve survival in critically ill COVID19 patients requiring oxygen or a ventilator.
Not getting enough sleep? Instead of getting grumpy, try some deep belly breathing exercises this Monday to relax and get some rest tonight.
If you’re having trouble falling asleep, consider scheduling in some time to destress before turning off the lights. Doing some deep breathing exercises can take your mind off your worries and get your head in the mood to relax and fall asleep.
Lie down in your bed, in whatever way is comfortable. Most people prefer lying on their backs with the lights off.
To get you warmed up and focused on breathing, take a few regular breaths in and out through your nose, nice and easy.
Do deep belly breathing: Inhale slowly through your nose feeling the air fill your lungs and then spill down to your belly, notice your belly expands with the breath. Exhale through your mouth, going in reverse, notice your belly is contracting and your lungs are emptying.
Continue breathing deeply until you feel calm. Most people do this practice until they fall asleep.
Catch some z’s! Over a third of the U.S. adult population gets less than the recommended amount of sleep. Not getting enough sleep is stressful and can cause chronic health conditions, such as heart disease, cancer, kidney disease, and diabetes. It also has mental side effects like social separation and an increased feeling of loneliness.
This Monday, put the brakes on stress with some deep belly breathing at bedtime. Start the practice tonight and continue throughout the week. Sweet dreams!
Today be mindful in your listening. MMM…. That Feels Good! Monday Mindful Moments
Mindful Hand Washing
Sure, hand washing is basic hygiene — the CDC recommends washing your hands with soap and water for at least 20 seconds — but it’s also an opportunity to quiet your thoughts. By focusing on all the different sensory characteristics of hand washing: the warmth of the water, the aroma of the soap, the feeling of the suds in between your fingers, you can carve out a moment of peace and relaxation.
The technique for mindful hand washing is simple:
Before washing, take a deep breath in through your nose and out through your mouth, and feel the tension leaving your face and body.
Next, turn on the faucet and focus on the sound of the water splashing against the sink.
When the water is warm, let it slowly wash over your hands, and really think about how it feels against your skin, palms, and knuckles.
Start lathering your hands with soap and concentrate on its scent.
Finally, rinse your hands and walk away feeling clean and refreshed.
“you’re too pretty to be sick” “everyone gets tired” “if only he or she tried harder” “you’re just too young to be sick” “you’re just too smart” “you’re lazy” “you’re making it up/ it’s all your head” “you should pray more” “your being punished for your ancestors sins”
Just some of the things that a Lupus warrior can hear day to day as they battle a life altering and life threatening disease. Just because you don’t physically see the pain a Lupus Warrior is in from day to day doesn’t mean they are not dealing with it. Many Lupus Warriors are masters of disguise to avoid hearing harmful words about them or their medical choices, making surviving and thriving even harder.
Before you decide to give your opinion about someone who’s disease doesn’t show outwardly always and that you know nothing about, think about it.
Educate yourself about Lupus and don’t make blanket statements that hurt more than they help! #LupusInColor
Today be mindful in your listening. MMM…. That Feels Good! Monday Mindful Moments
Listen in a New Light – Mindfully
When others are speaking, it’s easy for your thoughts to wander. Suddenly you may realize you don’t remember what was just said. Mindful listening keeps you present in the moment. It enables you to better understand what people are saying, physically and emotionally. So you engage in richer, more meaningful communication.
Before your next conversation, spend a few moments to clear your mind with long, thoughtful breaths.
As the person talks, listen intently, noticing not only the words, but the inflections and mannerisms.
Focus on understanding all that’s being communicated to you, instead of simply reacting.
Finally, listen intently to your body, mind and soul about what you need to do to stay healthy beyond lupus
It’s the last day of the 30 day get moving challenge. Let’s get moving with a nice long walk together live online. We will walk for 30 minutes.
You are amazing. You have stuck with it and stayed moving for 30 days. You should be proud of yourself. Even if you have had to take a break you still took the challenge and worked hard at getting moving. Well done!
Get moving with a couch workout. couch mountain climbers, sit calf raises, plank jacks, couch toe taps each for 30 seconds 3 rounds.
As you battle lupus you have to be crafty and creative in getting your workouts in. In between the pain and fatigue it can be difficult. Little workouts like these can be great in helping you get your body moving without overdoing it.
Try the video below to get a look as to how you can achieve this workout. Video courtesy of @justin_agustin on TikTok