Easy Tips to Manage Lupus and Stress
The Lupus Foundation of America recently opened up registration for the 2019 National Lupus Advocacy Summit in Washington, DC. Registration opened on December 10, 2018 and will run until February (or until they reach maximum capacity). The 2019 National Lupus Advocacy Summit in Washington, DC will be held on March 4th and March 5th of 2019 to help lupus advocates let their voices be heard. It is a great opportunity for lupus warriors to connect with other lupus warriors and to learn about ground breaking research in lupus. There will also be a time for lupus advocates to speak with Congress members about their personal lupus stories and urge support for critical lupus research and new treatments.
According to the Lupus Foundation:
In 2018, the Summit helped secure more than $14 million in federal funding for critical lupus research and education programs – but more must be done.
The registration to attend the summit is $50. They are also offering scholarships to those who would like to attend but can not afford to do so. They do state that the competition for these scholarships are pretty competitive, but they do a great job at listing fundraising ideas on their page.
Looking for the best soap for lupus skin? If you find yourself suffering from red, dry, and irritated skin on your face, you are not alone. As Lupus patients, almost half of us tend to suffer from the butterfly rash AKA malar rash. This is why we want to share the best soap for lupus skin rash. It is incredibly frustrating to not only physically feel bad, but then also have the visual symptoms of Lupus be brought forth.
Finding a gentle and moisturizing soap for lupus skin is really important. One of my favorites is African Black Soap with Shea Butter. Even a lot of people who do not suffer from lupus use this face soap and the reviews are incredible…and real! Many of the reviews seem to focus on people who have sensitive, acne prone, or rosacea issues that seem to produce a lot of inflammation and redness in their faces. It is hard to find a face cleanser soap that can be gentle, moisturizing, and help reduce redness and dry skin.
When it comes to finding the best soap for lupus skin, it’s important to remember that each Lupus warrior experiences different symptoms and reactions. Always consult with your rheumatologist or dermatologist prior to beginning any new regiments.
African black soap is a type of soap originating in West Africa. It is made from the ash of locally harvested African plants, which gives the soap its characteristic dark color. Black soap has been found to have some antimicrobial properties against skin microbiota such as Staphylococcus aureus, Escherichia coli and Candida albicans.
Tea tree oil has been studied and was shown to reduce histamine-induced skin inflammation. This is the first study to show experimentally that tea tree oil can reduce histamine-induced skin inflammation.
Tamarind extract is used for wound healing, has anti-venom properties and is an antimicrobial. Tamarind is optimal for skin as it is used to treat burns and prevents edema. In addition, it leaves your skin able to maintain a healthy, beautiful glow.
Aloe vera contains Auxin and Gibberellins. These two hormones provide anti-inflammatory properties that can help reduce skin inflammation like a lupus malar rash. Aloe is soothing and can reduce skin inflammations.
Oat (Avena sativa) is a centuries-old topical treatment for a variety of skin conditions, including skin rashes, lupus malar rash, erythema, rosacea, burns, itch, and eczema. A study was conducted and showed amazing results. Extracts of colloidal oatmeal diminished pro-inflammatory cytokines in vitro and the colloidal oat skin protectant lotion showed significant clinical improvements in skin dryness, scaling, roughness, and itch intensity according to the study.
SheaMoisture uses recipes handed down from a healer and give it a modern twist.
They use only the best ingredients gathered from around the world to provide the best products out there.
I wish that we spoke more openly about the parenting struggles we fight daily, along with our lupus diagnosis. Sometimes, I wish that I could reach out to another mom that is so busy fighting her own body that she sometimes can’t make it out of bed to be the mom she needs to be. Sometimes, I wish that we could just stop and take a moment to truly appreciate “The Lupus Mom”.
In a world where we are constantly given titles and labels, they often seem to be one or the other. But that simply isn’t true when you have lupus and children. You become “The Lupus Mom”. Lupus is not something most of us can just forget about or continue living with and not think about often.
It is integrated into our DNA and we are constantly reminded of it’s presence through every dark, soul searching night we lay awake from insomnia…or maybe it’s because we also have such fatigue that we slept half the day. Or maybe it’s because we are in so much physical pain. The same goes for the title of mom. It’s not something we do for a few days here and there, it’s a title that we fight for daily and have so much love and passion for.
When you struggle with lupus, some days you can be alive…like really alive… and on top of the world. You feel things more vividly, you see the world differently, your lupus fog may ease. Your dreams and hopes slowly float back down to where you can ‘almost’ grab them. You feel like you are back in the real world and in your real body.
Then lupus eerily rears itself from the depths of your hopeful soul and tries to destroy every hope and goal you have. It feeds off the desperation in the mind of a mother who loves her children so much, but some days may feel they are better off without her.
The mother who pushes herself so much to try and be a ‘normal’ mom, you know the ones that actually take showers and drive to a full time job they are passionate about. Like the ones who are able to make it to every school program and PTO meeting. The ones who always seem to have their shit together.
But lupus doesn’t care about any of that. In fact, it feeds off destroying our body from the inside out. But we are lucky to be lupus mothers because we know that many of our fellow lupus warriors have struggled with pregnancy and loss. You see, lupus can rob us of our chance to successfully carry a baby, especially if the mom is experiencing significant health issues. So the guilt of it all sets in…because we grieve with them too. So we try to remind ourselves to be grateful, that the life and children we have is a blessing.
But I want that one lupus mom who is struggling today to see this. To see that there are many of us out here. A lot of people do not like to talk about how hard it is to raise children and fight a chronic illness because maybe they don’t want to come off as being unappreciative, or seem like they don’t love their children as much as any other mom, or that they simply can’t get it together. I want you to see what we see.
I see you waking up after a few hours of constant interrupted sleep nightly. I see you trying to remember every last lupus medication, every last class party at school, every doctor’s appointment, and every favorite Fortnite dance. I see you remembering all those things while being physically in pain. I see you out there still getting things done while trying to maintain what’s left of your mental state.
I see you waking up to a new day that you already know will be filled with physical pain and maybe even depression. I see the person you once were and the person you have become. I see all the dreams and goals you once prayed about.
They may not see your limp when you wake up in the mornings, they may not see all of your ER visits, the tears that fell earlier, or the hours of dialysis….but I see you fighting the good fight. Every. Single. Day.
You are not alone in your fight and we see the amazing love and determination you have for your family. Understand that we KNOW what it’s like, even when most will never understand. So pick yourself off of the floor and wipe the tears from your eyes. You are a warrior and you are worthy. Your babies love you and they need you, even if you don’t believe it today. We need you.
Let’s end the cycle of not talking about our parenting struggles with other lupus moms. It’s almost like a stigma, that many don’t want to talk about. Honestly, it’s one that should be broken, because girl, you are not broken.
You are a warrior. You are a fighter. You are lupus mom strong.
If you or a person you love suffers from a chronic illness like lupus or fibromyalgia, you know that there are days when getting out of bed is nearly impossible. There are mornings when your joints may ache, your muscles may be sore, or you simply need to rest. During the holidays, many people are thinking about the gifts they are going to buy and the gifts they would like to receive. This year, instead of Aunt Suzie buying you another Christmas sweater because you told her it didn’t matter what she got you, maybe help her out with some guidance. We have compiled a list of 10 gifts for lupus patients that will help them throughout the year. Seasonal gifts are nice, but why not get your lupus warrior something that can help them year round?
Around 1/3 of patients with lupus also suffer from Raynauds Syndrome. Raynaud’s Syndrome can cause your extremities, such as your fingers and toes, to feel numb and change colors during cold temperatures or even stress. This is caused due to arteries that supply blood your skin to narrow, limiting blood circulation to affected areas. This condition usually affects women more than men. After experiencing cooler temperatures, it can take an average of 15 minutes of warming up before the skin returns to normal color. Buying a quality pair of insulated gloves for your lupus friend can really help ease the chance of Raynaud’s flaring up. It is important to look for insulated gloves that can protect the hands from extremely cold temperatures. This makes a great gift for lupus patients!
Heated slippers can also help with raynaud’s syndrome in lupus patients, but they also provide warm comfort during flares. Many lupus patients experience chills during lupus flares and by having a pair of heated slippers, you can help them stay warm and comfortable during their flares. These slippers have heating temperature up to 140°F/ 60°C, depends on ambient temperature, and accumulated heating time. It takes 5 to 10 minutes to feel warm, longer heating accumulate more warmness. The heater will automatically turn off after 2 hours for user’s safety. This makes an awesome gift for lupus patients!
Up to 2/3 of lupus patients experience sensitivity to the sun and even artificial lighting. The sun is also considered to being a major trigger for lupus flares. It is vital that all lupus patients wear sunscreen daily and year round to reduce flares and the even the chance of developing skin cancer as well. It is important for lupus patients to have a broad spectrum sunscreen that has a high SPF. Buying a large bottle of sunscreen can help your lupus loved one to never be without proper sunscreen again. This is a gift most people would not even think about giving, but it is definitely one that shows you have put in thought and done your research about lupus. Supergoop! was started in 2007 with a mission to change the way the world thinks about sunscreen so that everyone will use it daily. This is one of the most important gift for lupus patients.
InstaNatural’s Ultra Premium Emu Oil is 100% pure and fully refined, packed with powerful ingredients. It is naturally rich in unsaturated fatty acids and provides unsurpassed moisturizing benefits to the skin and hair. This emu oil provides ultimate hydration for dry, itchy, flaky skin. Reduces appearance of scars, dark spots, stretch marks, burns and other discoloration. In regards to how it can help manage lupus symptoms, it has anti-inflammatory properties that help soothe injuries, such as aching joints, sores muscles and sprains. Lupus patients will also love that it nourishes scalp and hair follicles to rejuvenate and replenish hair, considering many lupus patients deal with hair loss over the course of their disease. The lupus warrior in your life will love this well thought out gift for lupus patients!
TENS Units have long been used for muscle, joint, and even nerve pain. Something that once could only be found in a doctors office is now available for home use. Tens machines have been known to help block pain receptors in the central nervous system to manage pain and strengthen muscles via involuntary muscle contractions. Pre-programmed pain relief modes deliver massage-like sensation to you. Customize your own pain relief mode & intensity to relax different pain areas at the same time! Match your needs however you want.
Studies have shown applying heat and warmth to sore muscles, ache and pains helps reduce and alleviate the discomfort. Heating products have been proven to reduce stress, calms nerves and encourages relaxation. While many people may already own a standard heating pad, does your lupus loved one own that can work for their cold feet as well? Serta Ultra Plush Triple Rib Electric Foot Warmer, a warmer that refreshes both you and your environment at an economical price. For anyone that suffers from cold feet you know how miserable that can be. Whether it’s from poor circulation, arthritis, cold floors, or simply just wanting more comfort the Serta Electric Foot Warmer can provide a level of soothing relief unmatched by any other product on the market. While this is definitely suitable for warming cold feet, Serta also says it will work perfectly for waist, back, and abdomen areas as well.
Not only do most lupus patients have to worry about the financial costs of various doctor visits and prescription costs, they also worry about the cost of vitamins and supplements they may take to help manage lupus symptoms. The gift of vitamins is one that any financially conscious lupus patient would appreciate. By alleviating one less burden for them to worry about, by helping them out with their vitamin needs, you can really be a shining star to a lupus patient. Lupavita was created for lupus patients and targets key deficiencies found in many lupus patients. The vitamins were designed to help with common deficiencies in Vitamin D, Vitamin B12, and Magnesium.
There are days when lupus patients may have difficulties getting out of the house to go and shop for fresh and nutritious foods. If you have a loved one who is struggling with lupus, a gift of a fresh food delivery subscription can help their lives become somewhat more manageable. Instead of using the little energy they may have for physically shopping, a food delivery service makes it easy to order their groceries online. This can also help for lupus patients who may be overcoming an infection or trying to prevent an infection by preventing them from having to go out in public places. Lucy for us, AmazonFresh is offering us a FREE trial on their service. Be sure to use the link below to get your free trial.
The Lupus Encyclopedia is an authoritative compendium that provides detailed explanations of every body system potentially affected by the disease, along with practical advice about coping. People with lupus, their loved ones, caregivers, and medical professionals―all will find here an invaluable resource.
When a lupus flare lasts for a while, some lupus patients feel their self confidence and self care slowly leaving. By gifting lupus friendly makeup, you can help your lupus loved one feel a little like they did before they were sick. Maybe plan a day for a mini make up session when they are not feeling well. It is amazing what a little make up can do for someone’s self image when they are feeling down and not able to physically use their old makeup products anymore. Many people are unaware that the brand Physician’s Formula was actually originally created for lupus skincare. In 1937, allergist Dr. Frank Crandall created Physicians Formula as a tribute to the love he had for his wife Edith who suffered from lupus and longed for makeup that wouldn’t aggravate her sensitive lupus skin.
When it comes to shopping for that special loved one that is struggling with a lupus diagnosis, there are many gifts that show that you care and have researched their disease. Any of the products listed above will be sure to let your lupus family member or friend feel appreciated and loved, especially during their toughest moments. Don’t struggle with finding the perfect gift for lupus patients!
When it comes comes to an upcoming winter, some lupus patients experience anxiety in regards to the cooler weather changes. If you are like some lupus warriors, you may even seriously consider heading south for half of the year. Unfortunately, that option is not much of an option for most of us, so we decided to create a list of lupus tips for winter. These tips are meant to help you prepare for winter and keep your lupus and health in check throughout these cooler months.
It is estimated that around 2/3 or people with lupus suffer from photosensitivity. While many lupus patients are very good about wearing sunscreen in the summer, many do not know of the importance of wearing sunscreen in the winter months as well. Just because the air is cooler does not mean the sun’s harmful UV rays are not radiating as powerful as they did in previous months. Wearing a broad spectrum sunscreen can help prevent lupus flares if you are sensitive to the sun. You can check out our article on our favorite lupus sunscreen here.
Using hand sanitizer often can help prevent the transfer of various bacteria and viruses. It is recommended to use a hand sanitizer with an alcohol content of at least 60%. Non alcohol hand sanitizers do not work as well as those with at least 60% alcohol content. As a lupus patient, you should already be practicing good hand washing skills, but using hand sanitizer afterwards can help ensure that lingering bacteria and viruses are eradicated.
Directions for using hand sanitizer via the CDC:
The flu shot has become somewhat of a controversial topic in today’s society, but we can not stress enough the importance of lupus patients receiving their flu shot every winter. Each year the flu kills thousands of people. Many of these people have health issues like lupus and may be taking medications that suppress their immune systems. With a weakened and unstable immune system, the patient may be unable to fight the flu virus like most people. The flu can also lead to serious complications like pneumonia that are also very dangerous in people with lupus. Talk to your rheumatologist today about the benefits and risks of getting your flu shot. Most insurances cover or offer with low co-pays. A lot of retail pharmacies and county health departments can also offer the flu vaccine at a lower cost.
If you are in the 1/3 of lupus patients who have been diagnosed with Raynaud’s Syndrome, purchasing thermal gloves is essential in the winter. Lupus-related Raynaud’s usually results from inflammation of nerves or blood vessels and is triggered by stress or by cold temperatures. Raynaud’s is a serious condition and can be damaging to lupus patients. Consider purchasing a high quality thermal gloves that offers extreme weather protection. Look for gloves that are able to withstand negative temperatures to help ensure your hands will stay warm all winter. You can check out our favorite thermal gloves below!
Antibacterial wipes are a great way to prevent yourself from catching various viruses and infections this winter. You can use wipes at home when you are cleaning to help ensure that your home surfaces are bacteria and virus free. It is also really important to use these antibacterial wipes when you are in public places, especially when shopping. Shopping carts in stores are one of the easiest places for a lupus patient to catch a new bug. If you shop at stores that do not offer complimentary antibacterial wipes for their carts, buy a travel pack and carry them in your wallet or purse. This small tip will help minimize the chances of you picking up a bug.
The infatuation with green tea has grown exponentially in the last decade and for right reasons. Green tea has been the star of many scientific papers and research studies. In 2017, there was a study conducted on the benefits of green tea and lupus.
According to the study:
Green tea extract supplementation significantly reduced disease activity in lupus patients; in addition, it significantly increased the vitality and general health. This study showed that daily consumption of green tea extracts for 12 weeks improves the systemic lupus erythematosus disease activity as well as some aspects of quality of life.
So when you are about to brew that morning coffee, stop and think about the amazing aroma of freshly brewed green tea and give it a try. When you come in from outside and want something quick and delicious to warm your soul and body, try some hot green tea and help your lupus as well.