Lupus, Pandemic, Political Unrest and Social Change

To say that the last few months have been a challenge for us all, is an understatement. It seems like there are a lot of “big” things that are impacting our lives.  For me, Lupus is one of those big things, but there’s a bunch of baggage to unpack for everyone right now.  The global Covid-19 pandemic has changed how we interact, do our business, work and socialize.  The current political situation is so polarized that many of our personal interactions are tense and can end in hurt feelings or stressful moments. The social changes that are taking place are also causing us to review our behaviors, check our privilege and to do some hard personal work. These are all important and I have been doing my best to address these in a positive way, but without causing enough stress to start a Lupus flare.  Its’ a narrow path some days.

I find the some days I don’t have the energy to read the news or even log on to Social Media, it’s too stressful and depressing. So finding the balance between being connected, being up to date on current events and staying healthy is more difficult for me these days.  Lupus has a lot of different symptoms for different people and depression is one of mine.  I find that I have to really take steps to choose to be positive everyday, to try to find the good in people even when I don’t agree and to disconnect when it gets overwhelming.  I find depression to be harder to dodge since I’ve been staying socially distant, and working from home. It makes it very difficult connect socially. My dear husband and my kitties try to fill the gap, but that’s a lot to ask of them.  

As much as I have my own struggles, I think of others and how their fight is so much harder than mine, and they still fight.  I take a moment and think of the demographics of people with Lupus. Most of us are women, and a majority of folks with Lupus are women of color.  It must be so much harder for them to balance their Lupus health with the current racial climate, I can’t imagine how difficult that is for them.  It gives me determination to do better. Better at managing my own balance, doing better at educating myself about the African American struggle and how I can be a better ally. I am not perfect, I am learning. I’m trying to hold hope that this pain and unrest will be a catalyst for change and that empathy and understanding will win out over pride, racism, and fear. I am looking forward to a safer, more equitable world. Our country and our people are worthy of making that change.

I think it is also important to be very responsible when participating in social media, being very diligent when sharing or posting articles, to be absolutely sure that it is real news and not some of the untrue and damaging articles that are circulating trying to manipulate viewers.  Because of the platform algorithms, social media perpetuates things that it determines that are in line with your views, whether it is true or not. It is unethical and irresponsible for me to post anything like a news article or even a meme that I have not vetted and made sure that it is not something that contributes to the current devision or adds to the hate in the world. I can’t count on others to do the same so I don’t ready anyone’s news posts either. I don’t know about you, but I’ve had enough of that. It’s just too easy to hit “share” because it feels righteous, but it doesn’t make it right or even true. I don’t like being manipulated. So I no longer read ANY “News” on social media and ONLY get my news from News organizations that are as centered and reputable as possible. It’s the price for being well informed. It’s work, but it’s worth it.

I’ve got to get to work to stay healthy, make positive change, have positive attitude and personal responsibility. I hope you will do the same.

Lupus in the Time of Corona

On a normal day, living with Lupus, being social and putting yourself out there can be a challenge.  You never know when you might have to cancel plans and disappoint someone close to you because you don't feel well enough to do things. We are also much more vulnerable to germs, illnesses, and diseases because our immune system is weak and faulty.  So we go out into the world already compromised.  If we do make a date, event, or gathering, we are often on "red alert" making sure we don't hug or kiss a family member who mentioned that they are just getting over a cold, that we don't taste another's food or drink, and we do wash hands a lot.

Now that our whole world is battling this new Corona Virus, almost everyone is taking measures to keep the infection rate low enough to allow our medical professionals time to treat those who need it without swamping the health systems, to make sure that there are enough available respirators for those patient's who need them.  If we don't have enough respirators, and there are too many patients who are sick enough to need them, then the health workers have to make very difficult decisions. They must triage patients based on both need and on whether the patient has a good chance of survival.  So those patients who have chronic disease, heart disease, cancer survivors, asthma, Lupus, etc. are most likely not going to get a respirator.  For those of us with Lupus and other autoimmune disease, not only are we at a higher risk for contracting the Covid-19 in the first place, we are also guaranteed that if we to contract it our immune system will go haywire and start helping the virus to try to kill us.  Once we are sick enough to need a respirator, we will not be likely to have good outcome and that respirator will most likely be given to someone with a better chance of surviving. So we need to be extra careful.

With this in mind, I have been trying to protect myself.  I go to the grocery store, masked and gloved, and these outings encompass most of my interactions with other humans. I have been working from home for the last month and will continue to do so for another month at least.  My employer has been wonderful allowing this to happen for me and I am very thankful.  I know it can't be easy for my team to have me missing from the ranks, but they have been supportive as well.  I miss them.

In fact I miss everyone. Social Distancing, the closing of restaurants, the cancelling of events, and the need to stay at home, has separated me from almost everyone. When I do see someone it's from a distance, looking longingly and waving to a friend or loved one.  I have my dear husband and my kitties, but I do feel even more cut off from humanity than I usually do.  Lupus had kept me from participating in certain aspects of life and social activity and this situation has pretty much put a stop to everything.

Before all of this I was working on trying to be more social, finding ways to see friends, attend art workshops.  I had 4 weekends booked with things that interested me.  That all got canceled and I have felt cut off ever since.

It's all so uncertain, what this will mean for people like me in the future is unknown.  Will we be able to hug friends again?  How long will this viral risk be out there? Even if this levels off and respirators are more available, there is still the risk of being infected, getting really sick and my immune system trying to kill me. Will I be able to get my medication when I need it? Perhaps if there is a vaccine, that will help, but how long with that take?  How long with my life be at risk?

I know this is temporary, and I am safe and have what I need.  I do get sad sometimes, feel isolated and overwhelmed. I do get stressed out about the situation, and that doesn't help with my symptoms. So I've been trying to make events at home. We arranged an event on Facebook with some family and friends to have a "virtual" cocktail party, where we all got dressed up, with a cocktail or a glass of wine and posted photos of our shenanigans, that was a lot of fun and with everyone posting at the same time, it felt like connecting. Then my sisters and I had a Zoom meeting to just chat. That warmed my heart.  I have also been trying to get up, shower, get dressed and do something every day that makes me feel good. Today was a Spa Day, I did a face mask, did my hair and then made a pot of tea and sat down to watch Pride and Prejudice.  Yesterday I made sourdough biscuits and the day before that I painted portraits of my cats. This keeps me feeling less trapped and cut off and more thankful for the time I have to spend on things that I like.  I'm getting excited about planting my garden this season, I'm in the planning stages, getting things ready.  I am looking forward to the future, seeing my people in person, hugging my people, doing fun things with others or even just sitting and having a cup of coffee with a friend at the local coffee house. 

I will see you then, save a hug for me.