I've been wrestling with writing, missing the May deadline for a Lyme Awareness post. Yesterday our Border Collie cracked the writer's block.
A family of rabbits lives in our backyard, darting and hopping; very playful. Giving the illusion that Richard Adam's Watership Down's warren has sprung straight from the pages into our yard. Our Border Collie has a different take. To Marley, it is more like Cynthia Rylant's Mr. Putter & Tabby Feed the Fish.where Tabby, is driven crazy by goldfish. Yesterday, Marley flew into a frustrated frenzy, shredding every piece of bedding down to and including my side of the mattress. Fortunately, no quilts were damaged, but UGH! Suffice it to say, between medical expenses, student loan payments and life in general, new bedding and a mattress are not in the budget. So what to do beyond providing love and reassurance to one very remorseful BC who just happens to be draped over me as I write?
Well, there are two traits that come in handy if you're going to survive Lyme. You must be adaptable and a great problem solver. At bedtime, my husband carefully laid out the sheets, making sure the tears didn't overlap and fell quickly asleep. Sewing machine repairs could wait, but what to do with the rather large hole in the mattress on my side of the bed?
Wool roving? I replaced a piece of mattress, stuffed roving around it, then used a pad from a brace to hold it all in place. Good enough. Just as I drifted off to sleep, it hit me that the shreds of fabric were a simile for our lives.
Life as we once knew it in shreds or we're holding on by a shred? A bit of each I think. Dear ones facing cancer and congestive heart failure. Shared grief from recent losses. On the Lyme front, our nine year old is adjusting to life with a shunt and the remaining syrinxes in her spinal cord. Painting, singing and writing bring much joy. She has loved rejoining her classmates at school. Our 14 year old recently developed complex regional pain syndrome after a knee injury. So painful and debilitating! Music remains her solace and inspiration. As one world opens up a bit, the other shrinks. The ebb and flow of chronic illness.
A friend recently asked if I was keeping my head above water? I laughed, "Nose and lips."
Daily antibiotic infusions keep me afloat. Infusions to knock down mastoiditis, a stubborn bone infection left over from my Lupus days. I tire easily. A sense of humor, though sorely tested, hangs tough, but please pardon me if I laugh too loudly. The sense of humor is a bit strained and the left ear still messed up, but as our youngest says, "Welcome to my world."
Who can argue with that?
Yes, blankets are torn and our lives in disrepair, but shining moments keep us moving forward and our spirits alive. So here is my May service announcement in June. As the tick populations grow and spread and scientists warn of a perfect Lyme storm brewing, please learn what you can about Lyme disease. Not all ticks are infected with Lyme, but one that is can change your life forever. When I think of the havoc a tiny deer tick caused in our family's lives, it's humbling. Remember, a bull's eye rash is a definitive sign for Lyme, but it shows up in a small percentage of cases. Unfortunately, the tests for Lyme are often unreliable. Lyme disease should be a clinical diagnosis. A bull's eye rash or a summer "flu" are warning flags. Adequate treatment at the onset of infection can spare years of suffering later. Closing with best wishes from our family to yours!
I just stumbled upon your blog and can't believe the similarities between my health and your families. I have had Lyme disease for 18 years but only diagnosed for 4 years. When I read that your daughter has CRPS at 14 I began to cry. That was the exact age I was when I was diagnosed with CRPS. Both are hard and painful enough for anyone but put them together and it's just awful! Prayers go out to your and your family.
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