Saturday, March 30, 2019

The World We Live In



The World I Live In

I have refused to live
locked in the orderly house of
      reasons and proofs.
The world I live in and believe in
is wider than that. And anyway,
       what's wrong with Maybe?
You wouldn't believe what once or
twice I have seen. I'll just
         tell you this:
only if there are angels in your head will you
         ever, possibly, see one.

Mary Oliver, from Devotions, The Selected Poems of Mary Oliver





What's happening here?

Sophie's getting a 48-hour in-home video EEG monitoring. We hope that the IVIG infusions she's been receiving monthly are working to resolve this hideous syndrome. Sophie is strong. I would say that I am, but sometimes I'm not. The tech who hooked Sophie up was the nicest guy. We listened to jazz and talked books. Saint Mirtha is here, making soup. The IVIG nurse was here this morning and had to stick Sophie four times because she's dehydrated. She ordered hydration and that was delivered. I am so grateful for Sophie's life and our strength. I'm grateful for health insurance that allows this in-home treatment. I'm grateful for those legislators that continue to fight the piece of shit that runs our country and threatens to take away life-saving provisions of the ACA that allow Sophie to get healthcare and us to avoid bankruptcy and feel some measure of relief. I know it's not perfect, but it's a grand step in the right direction. Those who think otherwise are welcome to live the life of a person with epilepsy and then the life of a caregiver. I'll train you in both with mastery (meaning you'll forget about supporting that piece of shit if you still do) estimated to take about one month. Guaranteed. If you're not willing, shut up and listen to us. We know how to fight and what to fight for because we have to, all the time.

#healthcareforall
#littlelobbyists
#epilepyawareness
#seizuressuck
#caregiverlife
#wholiveslikethis

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8 comments:

  1. Ms. MoonMarch 31, 2019 at 7:11 AM

    You should be a lawmaker, Elizabeth. I'm sure you have plenty of spare time to raise cash and run for office.
    No. Seriously. You change the world with your posts, with your caring, with your love, with your intelligence. You do that every day.

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  2. BohemianMarch 31, 2019 at 4:00 PM

    AMEN! I think that until long term Care or catastrophic health Care is necessary for anyone, or Caregiving of a Chronically or Terminally ill Loved One, it is difficult to have that point of reference though. Most don't realize that no matter how responsibly they've lived and how much money they think will cover the costs, it will not nearly be enough not to Bankrupt almost any Family but the most filthy rich. Humane Health Care should not only be for those with affluence and influence. I'm Thankful too for what we have available, even if it's not always sufficient.

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  3. My life so farMarch 31, 2019 at 6:47 PM

    You are a mama bear, the best kind of mama, a fighter:)

    I'm glad that Sophie is getting the health care she needs.

    ReplyDelete
  4. 37paddingtonApril 1, 2019 at 7:53 AM

    Thank you for this, Elizabeth. I am so glad Sophie is getting what she needs, sometimes from people who are angels in our midst. Her new situation does seem to be an improvement on the LAUSD scene. At least I hope my impression is truth. Love.

    PS I had to make my blog private (work stuff) and now when I post it no longer updates on blog rolls and burner feeds, so you have to click to check. I'm pretty sure you can still read there, but if you find you don't have access, email me at 37paddington@gmail.com so I can invite you. I know you're busy, but I hope you'll stop by sometime. I'd hate to lose your company around the fire there. (Also, a private blog can get lonely.)

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  5. Steve ReedApril 1, 2019 at 8:54 AM

    Amen to that!

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  6. beth coyoteApril 1, 2019 at 2:38 PM

    Dear dear Elizabeth-

    So glad for your Mexico vacation. So glad the ACA exists and with many strong and determined folk it will prevail and become better and the Animal Farm that is our current administration will wander into the sea and we will reclaim our country and our democracy.

    A million rays of love to you and your family.

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  7. livApril 4, 2019 at 3:45 PM

    It's hard to look at that picture and it makes me very sad that Sophie has to go trough stuff like this. It sounds like your house was full of angels that day. But it's heartwarming to know they are there for you too, you so deserve angels in your life.

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  8. LeslieApril 8, 2019 at 5:02 AM

    Thank you for the poem. I'd never read that one. I hope the IVIG helps. I, too, am so grateful that we have healthcare through ACA. Love to you both, to you all. To Saint Mirtha, for making you soup❤

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