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Showing posts with the label lupus

my other child

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Last night we went to Katherine Applegate's One and Only Family tour organized by Red Balloon Bookstore. 😍 I've recently discovered Katherine Applegate's books and I just love her style of writing. I listened to most of them during my last few months working at a middle school when I was really struggling with my health and didn't know what was going on. So when I heard she was going to be in town I had to go! She is a lovely person and does a fabulous presentation. I loved hearing from her and was mostly successful in ignoring how woozy I felt during the presentation.  Standing in line to meet her I tried not to think about how weird my knees felt, and that my legs were starting to shaky. My mind immediately jumps to the worst conclusions when something is off with my body.  I reflected on my week. I have had a nagging sense of overtired fatigue, but brushed it off in favor of doing what I wanted to do.  Actually it has been several weeks that I've been letting my...

The Lupus Book

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  This week I started reading The Lupus Book by Daniel J. Wallace, MD. It's a little bit of a milestone for me, as I feel it shows an increased level of acceptance and non-reactivity to the idea of or even the word 'lupus'.  The title sounded a little ominous at first, but it isn't nearly as intimidating as The Lupus Encyclopedia , which is much, much larger.  That one is coming up on my book list.  So here's to applying my new strategy for reading books on a new type of book.  This feels like a step in a good direction and I am grateful for the divine courage to take it.  Also, the weather today is my kind of perfect 😊🍂 Welcome, fall weather!!

What is Lupus?

  The Lupus Foundation of America gives this definition: "Lupus is a chronic (long-term) disease that can cause inflammation and pain in any part of  your body. It's an autoimmune disease, which means that your immune system - the body system that usually fights infections - attacks healthy tissue instead." Lupus can affect the skin, joints, and internal organs. People with lupus commonly experience pain, inflammation, fatigue, brain fog, and sensitivity to the sun (it makes us feel sick and activates the disease, introducing the potential for growth. Also, a common drug used to treat lupus, Plaquenil, makes us more likely to burn in the sun. So the sun is not a friend of lupus).  If the disease gets worse or internal organs become affected, it gets more serious. Thankfully, this is not yet my problem.  I do experience all of the above symptoms in varying degrees depending on the day and season, as well as life factors like overall wellness and stress levels. I have...

What does Lupus look like? #1

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  Lupus  affects all aspects of life in many ways. It looks a little different for everyone, and a little different across days.  This week, it looks like soaking in the experience of picking strawberries in the (cloudy, cool) morning (with SPF 50, a huge sunhat, and a  long-sleeved sun shirt ) with a good friend. I didn't know fresh strawberries were so delightful 😊 It also looks like spending a lot of time (that same day) on house cleaning and crocheting and crafting because it's SO FUN. And wait 'til you see the sweet panda toy face I made... And then it looks like sore hands, feet, and neck the next day, and the feeling of inflammation in my body starting to take hold. Oops. I guess I overdid it. Time for an at-home work day and definitely show up for yoga . One cool thing about yoga - it almost always does more for me than I expect it to, even alleviating the pain, clearing my mind, and giving me some clarity for the remainder of the day. I am SO grateful for ...

Schedule Joy

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This is a screenshot I took from The Lupus Foundation of America 's website. They have a great portal where you can choose your area of focus for two weeks and they provide excellent information on the aspect of your choosing.  I came across this one in the Stress Management category and it made me think. Their use of the word "joy" caught my attention, partially because President Nelson talks about joy so much. I want to understand.  Anyway, I love this concept of scheduling joy. It's not a skill I have accessible all the time; I tend to think more about what needs to get done than what would bring joy to my day. I think this same tendency has me keeping the doors of my heart closed to a lot of the goodness of life. I struggle to receive goodness. But that's a story for another day.  In the meantime, my goal is to recognize joy-sparking actives and bring them into my day. Like blogging! I also have been playing more music this week and had a chat with...