Tess and I have a very dear friend who suffers from Systemic Lupus Erythematosus, more commonly known as Lupus, an autoimmune disease in which the body's immune system attacks healthy tissue, She was diagnosed six years ago after a major sunburn that left her face and hands so swollen that she could not open her eyes for several days and her own mother did not recognize her. (According to Tess, who grew up with her, she spent every summer of her childhood covered in sunscreen and then ultimately zinc oxide because she burned anyway.) Thankfully, when she healed, her pretty face and hands returned to normal but she lost half of her beautiful waist length hair partially due to the stress and also because she could not comb or wash her hair and it became so tangled that it had to be cut. This incident left her so terrified of the sun that she has not left her home since and has become a virtual shut-in, only going outside after dark to tend her herb and flower garden. Our monthly visits take place in a cozy, storybook cottage that she shares with her mother, complete with blackout curtains on all but her mother's bedroom windows.The entirety of her home is lit charmingly by clear twinkle lights because of her photophobia (or sensitivity to light). The refreshments are fresh, organic, and mostly raw as she has come to believe that cooked food does not agree with her. It is somewhat like visiting Rapunzel locked away in her tower. She is a lovely, intelligent woman forced to hide from the outside world because of a cruel condition, but determined to make the best of it.
Luckily for many future sufferers of Lupus, this scenario will be prevented by early diagnosis and preventative measures. If you know someone with Lupus there are many ways to be helpful to them.
Fatigue is a major symptom of Lupus. Offering to do a friend or relative's shopping or other errands for them would be much appreciated. If they have a pet, you could take it for a walk or play a game or two of hide the mouse. If they have children, be "uncle" or "auntie" for the day and take them out to a movie or sports event or for a picnic. Or if you like to cook, why not prepare a meal (or two) and put one in the freezer for another day. When we visit, we stay for a weekend and Tess cooks and bakes and I walk the Cavalier King Charles Spaniels (I added some pictures from the film
Restoration (1995) for those who might not know what a these lovely little dogs look like. I love this film! -Tess)
Then I go
fishing at the nearby river to stock their freezer with fresh, wild-caught salmon,(an excellent source of Omega-3.)
Not to be outdone,here is a picture of a salmon before.................
..........and After.
A gift basket is always welcome
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Books or videos in their favorite genre.
A CD of relaxing music.
Fresh fruit and /or vegetables from your garden (pesticide free).
Fresh flowers or a houseplant (also pesticide free)
Twinkle lights (apparently, you can never have enough)
Yogurt, Kefir, Kombucha Tea,
Sunscreen, lip balm (Bert's Bees or Badger brand are especially good)
Wild-caught fresh fish (a wonderful source of Omega-3)
Celebrities with Lupus
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Tony Braxton
Kristen Johnston
Seal
Selena Gomez
Nick Cannon
Me: 😭 Tess: Oh, my poor baby !!! 💋💋💋 Me: 😉😊 (Let the pampering commence ! 🍕🍣🍧🍰🍲🍷🍺☕🍝) Tess: Why are you smiling ? Me: 😳 (Uhhh....)
Very sorry to hear about your friend. I have never known anyone with lupus. Maybe I've just missed it, but there doesn't seem to be much info about it like there is for other diseases. I never realized it was so serious. It must be awful to have to stay indoors until dark. No doubt a lot of anxiety involved. Bless her heart. She is making the best of an unpleasant situation.
ReplyDeleteWhen I hear things like that it makes me realize how lucky I am.
Six months ago I was diagnosed with a very scary disease that many women seem to be getting these days. It involved surgery, then later two different kinds of treatment. ( where's that blue hair rise emoticon when you need it ? ) It's easy to get the "blues" some days, but I have to keep myself in check by remembering some of the awful things that others have to go through, just like your friend. My treatment won't last much longer, so if one of these days y'all hear a faint YAAAAHOOO (the shout heard around the world), it could be me.
You guys are Angels for visiting your friend and helping her out.
ChamCham, I hope your fingers are feeling better. That sounds like one vicious mailbox. Be sure and take plenty of time for "recuperation" . 😉
🌹 🎗
Thank you, Rose!I hope you're surrounded with friends and loved ones too. We want to be in on that YAAAAHOOO, so keep in touch. My "little nurse" is taking very good care of me (as always), so I'll soon be "right as rain". Take care and don't be a stranger!
ReplyDeleteLupus is no fun. I know several people with it. I myself have psoriatic arthritis, similar to lupus, a fellow autoimmune condition and of course osteoarthritis and fibromyalgia thrown in for fun. I agree with your above list on how to help. Those would all be wonderful. Bless you for helping your friend. I wish I had help. Next time your in the PNW, my dogs would love a good walk! Lol!!
ReplyDelete💐 Freesia
Thank you, Freesia. I will pass along your request to "the dog walker extraordinaire". I am certain he would be happy to oblige sometime. Tess
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