My mind is always racing with thoughts about my battle with Lupus. Most times I am trying to find tranquil thoughts to offset the raging war in my body. As one can imagine this is a constant struggle that is sometimes won with tranquility and other times submitted to the barrage of constant pain. Either way it always has my mind in constant thought. I find myself always trying to find a way to combat negative thoughts about this disease. In that process I have found my mind wandering from my own needs to the needs of those I love and share my life with day to day.
I know many will say Aww what a noble gesture to think of someone other than yourself. But, I believe it is sometimes a trick to bring back excessive negative thoughts about dealing with Lupus. The reason I say this is because at times I get into a mood and in thought about how painful it is for me to see my loved ones hurt and have to deal with me as I deal with this disease. I look at my friends and family and the hardest thing for me is to see my loved ones miss the old me I used to be. I mean really if that is not my mind playing tricks on me trying to allow the negative to slip back into my thought pattern I don’t know what is.
The irony of it all, thinking about the feelings of someone else while being thrusted into a plethora of negative feelings and emotions. It’s crazy how that negative can creep in and slowly try to poison your mind and soul.
Sometimes I have to just shake myself out of it and remind myself of the good things that come out of having a life altering disease. I have to shake the negatives off in order to truly begin a journey into a tranquil way of life.
I am on a quest to live in tranquility through thoughts that increase my mental health in order to generate a better physical body. There is power in positive thinking and there is healing in tranquility.
I have lupus, Lupus does NOT have ME! #LupusInColor
Monday Meditations with Lupus In Color Release yourself from the need to do anything right now, except just be. #mondaymeditations #LupusInColor
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Honeybee Health, an online pharmacy found at http://www.honeybeehealth.com, currently has hydroxychloroquine (Plaquenil) in stock for people with a lupus or rheumatoid arthritis diagnosis. They are approved by the FDA and order their inventory from FDA-approved wholesalers in the U.S. They are licensed by the California Board of Pharmacy. Lupus In Color is in no way affiliated with Honeybee Health, but we want to share this information to help those experiencing a challenge filling their hydroxychloroquine prescription due to a shortage at their pharmacy.
Honeybee Health services 40 states (view the list on their website). They do not take insurance, but work directly with wholesalers to keep their prices low. Plaquenil prices range from $45 for 30 pills to $90 for 90 pills (200mg). You can also use coupon code Lupus20 for a one-time savings of 20%.
Honeybee Health is dedicated to supporting people with lupus during this difficult time. In order to help as many patients as possible maintain access to this medication, they are only filling 30-day supplies at this time (this may be extended in future).
In order to fill your medication, please ask your doctor to:
Include your diagnosis code Include your diagnosis date Send your prescription electronically (Honeybee Health, Culver City, CA) or by fax to (310.559.5933) Info provided by Lupus Foundation of America
There’s no cure for lupus yet, but certain drugs can ease the symptoms. The symptoms of lupus and their severity can vary among lupus warriors, so it’s important to work with your doctor to create a care plan that’s right for you. To get started, it’s important to learn about the types of medications that can treat lupus symptoms.
Anti-inflammatories, over-the-counter and prescription pain relievers
Anti-inflammatory medications help to relieve many of the symptoms of lupus by reducing inflammation and pain. Anti-inflammatory drugs are the most common drugs used to treat lupus symptoms like fever, arthritis or pleurisy. These symptoms often improve within several days of beginning treatment. For many people with lupus, an anti-inflammatory drug may be the only medication they need to control lupus.
Anti-inflammatory and over-the-counter pain relievers include: aspirin and acetaminophen
Prescription pain relievers include opioids such as: hydrocodone, codeine, oxycodone, Tramadol (Ultram) It acts like both an opioid pain reliever and an antidepressant.
Corticosteroids, also called glucocorticoids or steroids, can help treat symptoms of lupus. These drugs mimic how cortisol works. Cortisol is a hormone that your body makes. It helps fight inflammation and controls your immune system. Regulating your immune system can ease symptoms of lupus.
NSAIDs are used to treat pain, inflammation, and stiffness due to lupus. These medications are available as over-the-counter (OTC) and prescription drugs. If you have kidney disease from lupus, talk to your doctor before taking an NSAID. You may need a lower dosage or your doctor may want you to avoid these medications.
Disease-modifying antirheumatic drugs, better known as “DMARDs,” are immunosuppressive medications. These drugs are used to treat certain autoimmune diseases. They work by suppressing an overactive immune system. This reduces inflammation caused by lupus, which can help relieve symptoms. DMARDS often are used with NSAIDs.
These medications include: Cyclophosphamide (Cytoxan®) , Methotrexate (Rheumatrex™) Originally developed as a chemotherapy drugs (to treat cancer) and used as an immunosuppressant (to treat lupus). Azathioprine (Azasan, Imuran®), cyclosporine (Gengraf, Neoral, Sandimmune), CellCept (mycophenolate mofetil)
Blood clots can be a life-threatening symptom of lupus. Anticoagulants thin the blood to prevent it from clotting too easily.
Anticoagulant medications include low-dose aspirin and prescription heparin (Calciparine®, Liquaemin®) and warfarin (Coumadin®).
These drugs were first approved to treat malaria. They decrease autoantibody production in your body. This effect reduces the damage lupus can do to your organs. These drugs also help ease lupus symptoms.
These medications include: chloroquine (Aralen®), used off-label, hydroxychloroquine (Plaquenil®)
BLyS-specific inhibitors or monoclonal antibodies (MAbS)
Benlysta® (belimumab, formerly called LymphoStat-B™) is a human monoclonal antibody. It was developed to disrupt activation of B lymphocytes by interfering with BLyS, a protein required for B cell activity. Benlysta® is the first and only drug specifically developed for and approved to treat lupus. Studies have shown that Benlysta can reduce autoantibody levels and help control disease activity. This drug was approved in 2011. It was the first drug created specifically for lupus in 50 years.
Repository Corticotropin Injection (H.P. Acthar Gel) Acthar® contains a naturally occurring, highly purified hormone called ACTH. ACTH stands for adrenocorticotropic (a-DRE-no-cor-ti-co-TRO-pic) hormone. Acthar is thought to work by helping your body produce its own natural steroid hormones, such as cortisol. These hormones may assist your immune system by helping your body defend itself against inflammation.
As many people with lupus know, the list of possible side effects from lupus medications can be alarming. Although lupus drugs can have serious side effects, many are quite rare and most can be managed. Talk to your rheumatologist about your concerns. He or she will help you weigh the potential risks and benefits of your lupus medication accurately.
Many medications are available to treat lupus. They don’t all work in the same way. Some relieve pain, inflammation, and other symptoms, while others work by suppressing your immune system. The symptoms and severity of lupus can vary among people, so talk to your doctor about your options. You and your doctor can create a care plan that’s right for you. Keep in mind that it might take your rheumatologist some time to find the right lupus drug or combination. You may also need different medicines over time as your symptoms change. There is no one medication that helps all people with lupus. A drug might work well in some people and not at all in others. Unfortunately we don’t have a way to predict who will benefit and who won’t.
It’s hard not to let the issues of the world to consume you. It’s especially hard when you are fighting for your life as you defeat lupus daily. Fear of the unknown can really create a lot of anxiety and stress and this can cause massive lupus flares.
However there are things you can do to alleviate your anxiety, your fears and stress around what’s going on around you. And, it’s not just about quelling the fear in the moment, but learning coping skills that can last you a lifetime.
So, today’s Midweek Refuel focuses on garnering HOPE, H.ealing O.ver P.ain E.veryday in a time when anxiety and stress can try to overtake you. We know that anxiety, fear and stress is normal and it’s okay to feel these emotions. But, it’s sometimes hard to detach from those emotions especially as you battle lupus daily.
In the next few moments I want to provide some tips that may be able to help you through some difficult emotions and maybe a few stressful days. Some things you may already be doing others you may want to try. I just want you to know you can remain hopeful even during times of immense stress and anxiety.
1. Reconnect With Nature: All you have to do here is walk out your front door. Whether it’s just a few deep breaths as you stand outside your front door, or a short time as you sit on a patch of grass, or simply taking a walk through your neighborhood… Reconnecting with nature gives you the opportunity to enjoy simply being alive. We can’t all stand on the moon and exclaim how beautiful our earth is, but we can all take one minute to surround ourself with the power of nature. It has a way of creating a perspective in life that is real, that is powerful and strong.
2. Focus On Spirit: The surest way to alleviate stress and suffering is to find meaning in it. Whether it’s through mediation, personal prayer, asking friends and family to pray for you, cultivating your own sense of spirit surrounding and supporting you, these are all such important ways to alleviate stress, anxiety and fear and encourage hope. Finding a deeper, spiritual meaning in what you are going through is important in instilling hope and faith to see those difficult moments through.
3. Play Music: If you are feeling stressed or depressed, especially since you aren’t able to leave your current surroundings, put on some music and allow it to sweep through your soul and lift your spirits higher. Music is an amazing healer and can meet you where you are.
4. Reach Out To Your Support System: There IS a support system around you, even if you don’t think you have a friend in the world. If you are having a stressful crisis, ask for help. There are butterfly angels that are out there waiting to embrace and help you. They need to support you and they need your support as well. There is power in knowing you are not alone.
5. Move And Get Moving: There is something about a fresh start during times of stress that is symbolic. It can help you move towards healing and help usher in new, positive and hopeful energy instead of feeling stuck battling lupus. You may not be able to physically move out if the space you are in but, you can go through your entire home with the idea of bringing in fresh energy. You can freshen up the plants in each room, rearrange whatever furniture you can, add a mirror or two and burn candles in the evenings to help create a new flow of refreshing light through old, dark and depressing spaces. Doing this in turn gets you moving which will help create endorphins that can bring you hope and happiness.
6. Focus On The Possibility
When the going gets tough, skepticism and cynicism can take center stage and can literally take over your life. The naysayers within you will scream things like “it can’t be done,” “we’ll never make it,” “it’s impossible,” etc. You have to be willing to think out of the lupus box and shut the naysayer in you down. Focus on what really matters and why it matters. We feel hope when we connect with that part of ourselves that wants to make the possibility a true reality.
7. Give Yourself Some Compassion:“You can search throughout the entire universe for someone who is more deserving of your love and affection than you are yourself, and that person is not to be found anywhere. You yourself, as much as anybody in the entire universe deserve your love and affection.” ~Buddha~ Self-criticism is a common problem, especially as you fight lupus for your life. It not one to be overlooked and the way you talk to yourself plays a vital role in well-being and healing in your lupus fight. It’s important to overcome your inner critic by strengthening your self-compassion and fostering a sense of acceptance beyond the anger and sadness we can have as we battle lupus.
Bringing a genuine sense of hope and optimism in your life can truly make a difference in your stress and anxiety. It can help you heal beyond the grips of lupus. Realizing that you have choices, power, and the the strength to continue fighting, goes a long way towards re-claiming a sense of hope.
Reclaiming your Healing Over Pain Everyday is a most important part in your lupus fight. It will lead you to have a more fulfilling life beyond the grips of lupus. It’s time for you to get back a sense of hope that will last a lifetime. It’s up to you, it’s your choice and you have the power to make it so.
Coronavirus Disease 2019 called COVID-19 and Lupus
Coronavirus is a group of different viruses that have a crown-like form (corona). Most types of corona virus cause colds (another virus, rhinovirus, is the most common cause of colds). However, recent years have seen epidemics with more serious infections in the form of SARS (Severe Acute Respiratory Syndrome) 2002-2003, MERS (Middle East Respiratory Syndrome) 2012 and in December 2019, an epidemic started from the city Wuhan in China with the virus covid-19, also called the 2019 nCoV or the Wuhan virus.
People with lupus are predisposed (at greater risk) to infections because of both their disease as well as the medications they take to manage it. Given that people with lupus are at higher risk for a number of types of infections, including viruses, it is only natural to be concerned about the coronavirus.
The Centers for Disease Control and Prevention (CDC) is closely watching the coronavirus both internationally and here in the U.S., while the risk of widespread infection continues to be low in the U.S., It is important for you to look after your health and keep your risk of infection low.
There is currently no vaccine to prevent coronavirus disease 2019 (COVID-19). The best way to prevent illness is to avoid being exposed to this virus. However, as a reminder, CDC always recommends everyday preventive actions to help prevent the spread of respiratory diseases, including:
Avoid close contact with people who are sick.
Avoid touching your eyes, nose, and mouth.
Stay home when you are sick.
Cover your cough or sneeze with a tissue, then throw the tissue in the trash.
Clean and disinfect frequently touched objects and surfaces using a regular household cleaning spray or wipe.
Follow CDC’s recommendations for using a facemask.
CDC does not recommend that people who are well wear a facemask to protect themselves from respiratory diseases, including COVID-19.
Facemasks should be used by people who show symptoms of COVID-19 to help prevent the spread of the disease to others. The use of facemasks is also crucial for health workers and people who are taking care of someone in close settings (at home or in a health care facility).
Wash your hands often with soap and water for at least 20 seconds, especially after going to the bathroom; before eating; and after blowing your nose, coughing, or sneezing.
If soap and water are not readily available, use an alcohol-based hand sanitizer with at least 60% alcohol. Always wash hands with soap and water if hands are visibly dirty.
These are everyday habits that can help prevent the spread of several viruses.
Lupus warriors who think they may have been exposed to COVID-19 should contact their healthcare provider immediately.
Information gathered from several online sources including, but not limited to the CDC, Lupus Research Alliance and Lupus Foundation of America. Art by Singapore artist Weiman Kow. Infographic by Curtis Newbold