The Year I Began Really Living (Again)

The Year I Began Really Living (Again)

January 16, 2017 | Posted in: Self-Care

Sometimes people choose a word or a phrase to focus on in the year ahead. Others make goals or resolutions. Others still, like precious friends of mine wrote out a manifesto, guiding principles they sought to live by for years to come.

In years past, these are things I’ve given tremendous credence to, making room to reflect on the year gone by, to mark all that was good, release all that was bad and to dream big for the year ahead.

And then there this year. We skidded across the finish line with something like fury and wonder on our faces. We’d actually made it! And how dare 2016 do that to us! The last few months of that beastly year had been less than gracious to us and I didn’t want to spend another moment thinking about it. I didn’t have any grand dreams for 2017. I was just so freakin’ thankful we’d all made it out of 2016 alive.

We spent the last days of 2016 in a cabin tucked inside in a winter wonderland of Minnesota.The Year I Began Really Living (Again)

That had been a fight, too. Like all of 2016. The night before we were scheduled to leave my youngest was thrilled to the hills about her trolls themed birthday party complete with smore’s, an outside movies, friends, oh and those things kids care nothing about- presents. Except when the time came my sweet girl had spiked a fever of 103.7 and wanted to know if she could nap instead of attending her own party. She made it through opening presents before we sent the kiddos home and rushed her off to urgent care where she promptly puked her guts up and tested flu positive.

Hey doctor, about this trip we’re supposed to be taking tomorrow…

So, we got enough Tamiflu and masks to inoculate an entire civilization and we thought we’d see how things looked in the morning. And, you know, after two doses of the gold dust? She was ready to go. And so, go we did.

And there, within the snowy wonder, I kept hearing a word. Begin. My word. I breathed it in and I knew it was mine. Begin.

So here are a few things I am beginning this year:

To live, really live again:

So much of my life, our lives are survival based. Last year was a prime example of that and it was gross. I started this new way of living on our trip. When the kids asked me if I wanted to go sledding, I said yes. Was I going to pay a price? Of course. But sledding isn’t running a marathon it’s sitting on my butt and going a hill. When my daughter asked me to go snow tubing, I said yes.The Year I Began Really Living (Again)

Was it wise with a PICC line in? I’m not sure. I wrapped a scarf around the line inside my coat and went for it. And it was amazing.

When my friend invited me to go on a virtually no-cost trip to London during the month of my birthday, I said, “Hold my spot while I work this out.” I have never been overseas. I want to go to London. I want to live, really live. Begin.

To start a foundation that pays medical bills for families in need:

This is something I’ve been pondering for a while and since it’s the year to “begin” well, you know.

It will start out very small. Hopefully, sometime this year you’ll see a shop go up on the blog with “spoonie” oriented merchandise. The funds collected will go right back out to families affected by CVID or Lyme disease. Two groups of people I often see struggling to pay for their care within the chronic illness groups I participate in.

As a CVID patient, I receive an infusion of donor antibodies monthly. My copay for this treatment is six-hundred dollars monthly. For others, the monthly cost is in the thousands. Patients simply can’t afford this, so they go without the life-saving treatment they need.

Chronic Lyme patients rarely have their care covered by insurance and often end up paying thousands and thousands of dollars attempting to regain their health or simply go without the care they require.

Eventually, I’ll need much larger revenue streams to help these people. I’m still working on all of that as well as the legal pieces. I’m such a novice at all of this I don’t even know what I don’t know.

Now is the time to begin.

Begin really living and helping others really live.

What things will you begin this year?

 

 

 

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7 Comments

  1. Brittany W
    January 16, 2017

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    This post was exactly what I needed to read today. I have been saying no to so many things out of habit to prevent flares and symptoms. I’m going to say yes more.

    • Stacey Philpot
      January 18, 2017

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      Brittany,

      That habit can bring life and death I’m realizing. it can be so filled with wisdom at times and steal so much joy at others. I think it’s all about balance and really thinking through the trade off’s you know? Is a life where we never really live one we want? And at the same time, we know we can’t be reckless. For me, this is the year I cut lose a little:)

  2. Kelly R Smith
    January 16, 2017

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    “Begin” holds so much promise and hope! Love this!

  3. Lori Wildenberg
    January 17, 2017

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    Begin…what a great word. Begin is so hopeful–Thanks Stacey!

    • Stacey Philpot
      January 18, 2017

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      Begin- is my favorite word in many years!

  4. Sherry White
    January 17, 2017

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    “Begin” is a great way to think about it because so many times we don’t start something because we get bogged down with all the “what about this” and “how’s this going to work”. Half the problem is just deciding to begin! Sounds like it’s going to open so many doors for you:)

  5. Stacey Philpot
    January 18, 2017

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    Exactly, Sherry and exactly where I tend to get stuck- on all the overwhelming “but what about” details. There’s such freedom in not knowing with certainty what the ending looks like and just, beginning just the same because you know it’s time!

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