Sometimes as you battle lupus you have to allow yourself to enjoy over sleeping. You have to indulge in lazy Sunday afternoons and procrastinate things that may demand your attention. You have to sing songs and sip an occasional adult beverage in bed while you forget the damage lupus has done. You have to remind yourself to enjoy the beauty of nothingness and replenish the energy that lupus and people drain. You need to get wrapped in cozy blankets and covered in oversized sweaters with the air condition on just in case you get hot. In the midst of this lupus life, we must remember to surrender to the solace of alone time where we can clear our head and replenish our soul for anything new that may arise from lupus. #LupusInColor
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 Mindful Moments. A moment to be aware and engaged in your present moment.
Be Present & Be Mindful #mondaymeditations #mindfulmoments #LupusInColor
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Midweek Refuel Message: During our lupus battle, we all can feel a little helpless at times. That helplessness makes us want to try to control everything. Don’t allow feeling helpless turn you into a warrior that makes being overwhelmed the norm.
You don’t have to try to control everything. You can say no and just let things be as they are and fend off flares by limiting your stress. Tonight, make a commitment to feel less helpless in those tough moments and more hopeful in the healing that manifests throughout your lupus journey.
Ten Steps to Protect your Vibe as you Battle Lupus
Let go of things you can’t control.
Avoid comparing your lupus battle to you when you did not have lupus and to others who have lupus.
Keep your faith for healing bigger than your fears of the pain.
Don’t do anything that you know will make you feel bad, doesn’t feel right or cause you a flare.
Don’t be afraid of being alone with your pain to figure out how to handle it.
Avoid bashing yourself because you have lupus. It isn’t your fault.
Speak kindly to yourself you are fighting a hard battle.
Take care of yourself before you take care of others.
Stay away from people who drain you or who are bent on misunderstanding your lupus fight.
Ignore any opinions about how you live beyond lupus if they don’t enhance your life. They aren’t walking in your shoes so don’t let them dictate your steps.
Sometimes you don’t feel like being positive as you battle lupus. Sometimes you just want to cuss and scream and cry and bitch, moan and complain about it all. That’s ok do it! Don’t feel guilty either. Let it out, Shout it out, Get it out of your head and release it from your soul. Every day, if you have to take 5 minutes to release that negative energy, do it! Just follow it up by replacing it with positive energy to renew and replenish when you feel you’re done. Most times you just need to release in order to feel better, you can’t stay in that mode more than 5 minutes or it becomes the focus of your day. Use the 4R’s – Recognize what you are feeling, Release them from your spirit and Renew your mind by Replacing those thoughts and words with all that’s positive and good in your life beyond lupus. #LupusInColor #4Rs #recognize #release #renew #replace
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
