I’ve been having a lot of interesting conversations lately on some of my lupus pages. Our current thread of conversations started with rashes. (Having a chronic illness leads to some weird conversation threads….) See the name lupus is generally thought to have originally come from the 13th century and stemmed from the red rash it leaves on the sufferer’s face , which some physicians seemed to think looked like the bite of a wolf. Now in this day and age of political correctness we refer to it as the “butterfly” rash so as not to offend anyone.( Another term for the rash, the medical one, is malar rash.) Well, we talked about butterflies for a while, and some of us do get the butterfly rash, and some of us don’t. ( I do.) But one of my friends, new to the lupie world, asked a very good question. She wanted to know , how come so many of us post butterflies for our support and conversation pages, when our disease is named for the wolf? I guess it kind of took me aback. I know the reasons we post the butterflies. They represent change, as in constant change of the disease we are fighting every day. They represent strength, the strength it takes to struggle and emerge from their cocoons in order to fly. The fact that though their wings look quite delicate , but are actually a lot stronger than they seem. And of course , they’re pretty. They also represent new life and hope in many faiths and religions. But then I began to wonder if maybe we hadn’t given the wolf a bad rap. I myself have had such a severe case of lupus that thinking of the wolf as my friend has not been necessarily my first thought in this fight. But perhaps I’ve had one of my best players “on the bench” .Maybe I’d been bringing a butterfly to a wolf fight so to speak. Wolves are scary looking animals. I mean they’re huge for one thing! , weighing anywhere from 80 to 140 pounds. They are fierce hunters , known in packs to take down even the North American bison. So if you think about having a disease named for something so aggressive , that can be pretty intimidating! But then I decided to do a little more research on it. I said to myself if I can use the wings of the butterfly to my advantage in my psychological war, I’m going to get some of this lupus vulgaris fierceness for myself too! Wolves as symbols are part of many cultures from all over the globe , but I suppose the most notable of them are the North American Native peoples. Just reading through the stacks and stacks of information on their histories could take a lifetime to learn about their amazing stories, but some of the ones that stood out to me the most were the ones that talk of the wolf as standing for “teacher”, “guide” , “strength” , “unafraid in the face of death” ,but also possessed of deep faith and profound understanding. I was very surprised. I think maybe people see the images of the wolf devouring its prey and think only of their bodies being consumed by this hideous alien disease. After doing all my reading today, I’ve decided to fly into battle on my butterfly’s wings but with a pack of wolves for backup. I think I can use some more teachers, guides,and warriors with strength unafraid in the face of death. Not just fierce hunters but possessed of faith and understanding too. Cause after all, when you’re fighting for your life, why leave your biggest, scariest looking soldiers at home?
Well, my FB page has not let me post anything for the last two days. Don’t know if it’s my deal or theirs. I’m running a series on my Lupus page, called 31 days ~ and ways to help lupus suck less. Yesterday would have been day 12 and today is day 13. So I’m going to try to write it here, and then post it there, and see if I can get around it that way. So , anywho. For yesterday Day 12~ We are all suffering from a terminal illness. From the moment we are born , we are all heading slowly towards the grave. Some of us might live to be 100, and some of us might die tomorrow. Is that fair? I don’t know. I don’t think we were ever promised “fair”. All we are promised is now. Right now, this moment. To breathe, to love , to spend with those we care about. So today’s word is LIVE. Right this minute. Don’t put it off. Don’t wait until tomorrow to tell that person “I love you”, “Thank you!” or “You mean so much to me!”. If having a chronic illness has taught me anything positive, it is this. Right now is all we have. Make it count.
For today Day 13~ Ugh. Can’t live with them. Can’t live without them. Sometimes they make you feel great, and sometimes they make you want to scream. Today’s word starts with “M”. What? Men? Noooooooo! 😉 Medications! I know , I know. Bad joke. (But it was funny, right?) I know that I have to take medications. It does not make me like the fact any better though. I HATE taking pills. I HATE IT. I don’t like feeling like I “need” anything. But it is what it is. Let’s face it. Even 50 years ago, the outlook for people with lupus was not great. Medicine has come a long way in keeping us above ground. It’d be great if we could go even further with today’s technologies and find a forever cure. That’ s what we’re all rooting for. But until that day comes, I am going to try to be a good girl and take my meds. ((HUGS))