This is not a lupus* blog, and it will not become one. It is a blog, however, about my faith and my family (among other things). As such, it only makes sense that I might, on occasion, write about our new Life With Lupus (LWL).
I don’t know a lot yet about LWL. My dad had it, and passed away from it, so I guess I knew a little going into this. Don’t worry! I don’t imagine my fate will be the same, and I don’t want to pretend oh-so-dramatically that I think that. In the last ten years lupus treatment has grown by leaps and bounds, and 80-90% of those with lupus have a normal life expectancy.
Does that mean Lupus doesn’t suck? Um, no.
Because it does. It sucks a lot. Not every day, but many days. And even when it doesn’t suck, per se, it does impact each day in some way, whether big or small.
There are a lot of things that come along with a diagnosis (finally! A diagnosis!): relief, mourning, anger, denial, frustration, disbelief, etc. It’s really the seven stages of grief. I think I’m in the acceptance stage now because I’ve decided that I can be open about it, and even write about it here.
Honestly, there’s some very good stuff that comes from a diagnosis of a serious chronic illness. I signed up recently for a Lupus support website, and it asks all new members to answer questions for their profile. One question is, “Knowing what I know now, what I recommend to others is…”
Love your kids, your partner, your parents, your friends. Love yourself. Love your neighbors, the homeless guy on the street, the business exec on the street, and everyone in between. Learn to say, “there’s no rush,” and truly mean it. Learn to say “no.” Learn to say “yes” when possible, but give the caveat that you might just have to flake. Flake if needed. REDUCE STRESS. Use your community; they truly want to help. Never take them for granted or misuse their help. Find a good rheumatologist, but always do your own research. You can diagnosis in 2 days of googling what might take even the best rheumy three months to diagnose. That said, beware of the internet and what you Google. Take pictures of rashes, swelling, hairballs, splinter hemorrhages and anything else you can. Because, of course, the day of your long-awaited appointment everything will clear up and you won’t be able to make your case. Download the “My Pain Diary” app, and use it not for pain, per se, but for all the other medical things you need to keep up with. Eat right, exercise, rest, and stay positive.
Sure, there are things I could add (many things!), but these are the bones of it.
I’ve had a lot of loss in life, and so I always assume that I’m already living life pretty well aware of its importance and fleeting nature. I get on my little kids’ level and look them in the eye when they speak. I don’t giggle and brush away the silly things they take seriously; there are too few years they will be honest enough to say what they think, and perhaps even fewer years that they’ll care what I say in response. I try to ignore my cell phone and computer when they’re home (goodness, the two little ones are home a lot!), and I try to drop little tidbits from the past, my past, into the life of my oldest. Someday they will want to know it all; no use beating around too many bushes. I try to have dance parties, and not sweat the small stuff, and have lots of white space so “I don’t have time” are four words I seldom have to say. Do I always succeed? Of course not.
My point here is that I thought I already fully realized and appreciated the time I have here on Earth. But let me just say that there is nothing like hearing certain words from a doctor to make you really realize and appreciate the fleeting nature of things.
That sounds awfully serious given medical advances and that the numbers are significantly on my side. But that’s neither here nor there in the late night and early morning hours when one’s mind turns from all the rational things we focus on during the more civilized hours, to all the irrational things we pretend we’re too grounded to think about.
Because really, we aren’t that grounded. Or perhaps it’s just me.
Perspective shifts. Hermeneutics readjust. And yes, love and appreciation and faith grow.
Most mornings my little kids and I sing Rise and Shine together to get our days going. Often we follow it up by singing Psalm 118:24:
This is the day that the Lord has made,
Let us rejoice and be glad in it.
These are the words I will bind to their wrists and put upon their foreheads. These are the words I will live.
* SLE in my case (and my dad’s)
There are tons of resources online, but here are a few:
8 thoughts on “Our New Life With Lupus”
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A doctor I saw in Virginia thought I had lupus, but as I was leaving the area didn’t do the testing. The next doctor I saw diagnosed chronic fatigue syndrome, which is a diagnosis of elimination. I was told it was chronic — incurable. Please make sure you learn more than your doctor about this diagnosis, rather than accepting the diagnosis and then learning about the illness. And don’t forget that music is a form of healing energy that doctors know very little about yet. I will be praying with every thought of you.
Very good advice. I’ve been thinking of you/praying for you a lot lately and wondering how you and yours are doing. I’ve also been thinking of you as I re-explore music. I’m finding the music that lifts my fatigue and reduces my stress. It’s trial and error but making a big difference in my life, and really in my family’s life as we explore new things together. Thinking of you and hoping all is well…
I know it’s hard…I’m 25, was diagnosed at 23. I live a normal life for the most part. God has definitely shown Grace for me in this. I know I am not alone. There are so many people going to the same things I am. I love what The lupus community can bring! Hugs and spoons to you!❤️
Ah, so young to hear this diagnosis! I’m glad to hear your life is normal for the most part. I think I’m getting there, but we’re still finding what works best for me. But I am already a whole different person now (with the right medicine) than I was just a few months ago. I can only hope things continue to move in that direction. Here’s to continued hope, healing, and health! ❤
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Amen. I know you will get there! Continue to the good fight and always, always keep your hope. ❤
I love you, J. Here with you in this LWL phase of your life.
I know you do and that you are. Never a doubt about that in my mind. Love and miss you, friend!