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Showing posts from September, 2018

Day Off - Day ON - Day Off / FERN

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So Saturday was quite an eventful day for us.  We left bright and early, around 8:30 am for a full day ahead.  Knowing this in advance, I had purposely had a "slow and easy" day on Friday. I was able to complete eight Angel Gowns earlier in the week (YAY!!) so David drove us to Charlotte for a Caleb Ministries  meeting.  How wonderful to walk in and be greeted by Sandy, Craig, Ellen, and the other folks who volunteer with this beautiful organization!  We heard from a young couple who had received one of the PAT boxes, and they shared about their precious son and how much the gift of his short life had brought to them, as well as the comfort the ministry had been in their lives.  I picked up a few more supplies to work toward making gowns for next month, then we had a quick lunch before heading to our next event -- a Myasthenia Gravis Support Group meeting. I have found a lot of help -- and GREAT friends -- in online support groups over the years.  I joined my first one

A Letter To the Anita of April, 2018 / STITCHING

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Dear Younger Anita, Thank you. I've come to appreciate you more in the past few days.  There are a few little signs you left that I've recently stumbled upon that made me smile, and made my "new normal" just a bit easier. It's only been a few short months -- April to almost October, about 6 months -- but so much is different than when you were here.  I am beginning to find my way back to a few things you used to do. One of them is sewing. I wanted to try to make some Angel Gowns.  Younger Anita, you would spend an afternoon cutting out gowns, then a full day machine stitching and pressing, then a couple of evenings with the hand work -- turning out maybe a dozen or more gowns of different sizes. I dreaded trying to cut out the gowns, to be honest.  Cutting them out is the only part I sort of dislike; for some reason it makes my back hurt -- it bothered YOU, Younger Anita, I know.  I figured now it would take me most of a day, if not two days. But a

23 -- The Portal / NEW WORLD

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I live near Ridgeway, SC.   In the town there’s an archway, all that is left of the old school.   It’s a pretty cool relic.   I’ve always referred to it as “The Portal To Another Dimension.”   In many ways, I feel like I stepped through a portal into another very strange dimension called Myasthenia Gravis. So many changes, everywhere, in such a short span of time. At home, there are subtle differences in our living space.   There’s a chair in my bathroom because I can’t always stand up to comb my hair, brush my teeth, or put on my makeup.   It’s just exhausting, and I sometimes find it easier to do those things seated.   In the corner of the bedroom, there’s an overnight bag.   It’s my “Grab and Run” hospital bag.   Already packed with pajamas, toiletries, a phone charger, other odds and ends that I’d need for a hospital stay. There’s a squeeze respirator in a basket in the den; another one is in the car.   There are a few copies of an MG fact s

22 - Florence / STORMS

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Here in South Carolina this week, there has been ONE THING on everyone’s mind:   Hurricane Florence.   We watch the television or online constantly for the latest updates.   Sites with webcams that are located at the beach become increasingly popular.  My favorite is in Murrels Inlet at the Dead Dog Saloon .    People flock to the stores for bottled water, bread, milk, and other supplies to have on hand “just in case.”   The location of the “Cone of Uncertainty” becomes a topic of discussion, as do the spaghetti models of possible tracks of the storm.      People share memories of the chaos caused by Hurricane Hugo in 1989, and talk about how long they were without power, how badly the beaches were damaged, how it affected their lives. I live on a lake that is prone to flooding with a heavy rainfall, and if upstream gets a lot of rain, it’s a sure bet that the following week that runoff will be in my back yard.   I see that the "Powers That Run The La