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April 30, 2015

The Return of "Let the Sky Weep"

I mentioned in my last health update that my favorite distraction is music. So I decided it's time for another Youtube release!

If you're at all familiar with my music of the past (which is about two of you reading this--hi, Mom and Michelle! ;) this song is (sorry!) not new to you. But it is one of my absolute favorites I've written, and my amazing accompanist, Alandra, blew me away even more than usual with her work on this song. So if it ain't broke...


This was recorded back in 2009 I believe, back when, by all obvious standards, I wasn't even sick. Yet somehow, knowing personally what this song was about, I feel like it is now so applicable to my life for completely different reasons. Sometimes you reach the point where you don't even have tears left. Sometimes you know you have every reason to cry but you're just not. Been there, done that. There now. More and more keeps happening and going wrong to the point that I kind of have to just shut off those emotions to survive. This song was always so me, but it's now really me.

That said, I am living proof that "sad is happy for deep people" when it comes to music, and this song makes me deeply happy. All these years--and so, so many trials later--and I still love this song. Enjoy the happy-sad with me? (And be sure to like, subscribe, and check out "Home to Emily" while you're there!)

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April 28, 2015

What's Up with This Blog

In case you were following my blog back at the start of the year (which was roughly yesterday and yet somehow months ago), you may be a bit confused as to why I put up this big ol' post about why I would no longer be officially blogging, and yet here I am posting several times since then, along with a new name and design.

Well, the new name and design just makes me very happy, and it also reflects my much more low-maintenance plans for this space--basically my place to share fewer, more important things with you. (Read more about that on my about page.)

But as far as what's up with me posting so often, I won't repeat here why I decided to stop officially blogging (that's all explained here), but I do want to say why I keep posting when I sorta said I wouldn't, at least a bit more so than the unless-I-have-a-big-announcement clause I threw out there.

Turns out, I can't handle the whole posting certain days with certain themes weekly thing. But it also turns out I seem to still have a lot to say, which I did not expect, and where else to say it except here on my own blog? And when I have something to say, I want to just say it, no rules of what day to post on, no number of posts to hit, no obligation to post again after that, and little to no effort social-media-ing my post. So that's what I'm doing.

Because I do finally have small (though huge to me) music announcements to pass along (another to come on Thursday!), and I may have jewelry or design sales to proclaim also. But the longer I live with chronic illnesses, the more I find I have to say about it, in addition to sporadic health updates. So I am. And I will. But this time around, whenever the need hits me, which may be five times in one month and then not for weeks and weeks.

So all that to say, yes I am posting much more lately than I planned, but just know that if you see a post from me, it's not to fill a tired theme--it's because I really, really mean it and must. speak.

Thank you for reading!

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April 23, 2015

Health Update: Hurry Up and Wait

Warning: painfully honest health update ahead. Here's where I stand right now:

Puffy and blurry eyes from an inevitable breakdown, stopped only by the not-new acknowledgment that if I were somehow able to cry as hard as my emotions demanded, my body might break in two.

A green-bruised arm, though surprisingly not nearly as bruised as you'd think, from 12 vials of blood taken on Monday to test for Lyme Disease, Lupus, Epstein Barr, hundreds of allergies, and who knows what else.

What feels like half of the little hair my sickness(es) has left me with now gone, up to the scalp, for a metal poisoning test accomplished this weekend. "Hair sample" my rear-end. I already had precious few hairstyle options for the rare times I leave the house. Now I can't wear it up because of the missing hair and still can't wear it all down because of the hair I'd already lost. And I now live in fear of reaching up and accidentally feeling those five spots where hair once was, something that won't just go away in a couple weeks. Hair doesn't grow back overnight. I am, however, extremely relieved to find, after putting off washing my hair for this reason for four days, that they're practically unnoticeable when washing my hair. And at least I had hair left to offer to find out once and for all if I do indeed have metal poisoning. Had we waited longer I might not have.

Beyond frustrated at this hurry-up-and-wait game. I had six medical tests to take, four of them now accomplished, and was set to get them all done asap but now find out that one of them has to be done later on next month. The other I have to wait on to arrive in the mail to take. And of course each of these medical tests will take 2-6 weeks to get results back. So I'm anxious to hurry up and begin treatment though I don't even know what all exactly it will be for yet.

Edited on 4-24 to add: I just learned that all 12 vials are bad and I'll have to have it done again. It only worked out this past weekend because we happened to be an hour nearer to the place than we usually are and were already on the road. We can't just up and drive 6 hours round-trip on a weekday, and I also can't just turn around and give that much blood over again. I don't even have words right now.

So what am I doing in the meantime? Besides trying not to think about all the aforementioned, because then I'll cry again.

Lots of jewelry: making, photographing, listing, planning. Trying to sell as much as possible to help with all this mess of medical junk. I'm in the process of adding all of these rings to the shop, which makes my heart very, very happy:

Five colors, all available in a silver or bronze adjustable base, all looking like happy candy. Which one should I keep for myself? ;)

I also had my first big bridal order smack in the middle of this past nightmare weekend that was a bigger blessing than I think the bride will ever know.

You can get your own of this necklace, or a few for your friends, here!

Lots of blog and shop designs: I happily got to do a full Etsy shop package for a lady this past week, with lots of other little projects. Distraction that brings in a little money is always a good thing.

Watching lots of Friends. It is excellent background noise when I'm working. Or whatever. I give up on how many times I've been through all the seasons. I've gotten to where I'm realizing certain seasons are awesome and some are just okay and can skip accordingly. Not to undermine the awesomeness of the show as a whole.

Working on music. Of all my "distractions," that's what makes me happiest. I am so proud of "Home to Emily," regardless of how many people may watch it or how few people may like it, because I know the time and effort that went into it, how many obstacles there were that most people will never hear about, and simply because I love that song. And I'm dreaming of doing another such project as soon as all the stars align.

I'm thankful for my best friend for letting me dump all this on her when we both know there's little she can do, besides letting me get it out. For very, very generous family members helping me get closer to answers. For people who don't even know me praying for me--and saying so. For my mommy for being my mommy and cutting my hair for me and understanding how traumatic it was and that it wasn't crazy that I was shaking for a long time after. And for my husband for being superman, just holding me, taking care of me, and taking on the billion little steps in this married-to-a-spoonie life.

And I'm thankful that this misery is another step on the road to answers. I hope to be back here with those answers soon.

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April 14, 2015

No, "The Spoon Theory" Does Not Apply to Your Headache

This is something I've encountered recently that has upset me enough that I can't seem to let it go. So I'm saying something.

If you've read anything about chronic illness, you've probably encountered "The Spoon Theory" at some point. If you haven't, please take a look at it--it's so simple yet has become a pretty priceless analogy for likely thousands of people like me.

The whole “Spoon Theory” is intended for those with life-altering, debilitating chronic illnesses to attempt to begin to get across to their healthy peers what their lives are like. It only scratches the surface of the helplessness we face in how few “spoons” we possess each day but uses a simple analogy anyone can understand in a powerful way. We are not really in charge of our bodies and, try as we might, cannot control its whims--we are not in charge of how many "spoons" we are allotted every day and must use them wisely. We can't just push through every day like nothing's wrong and pull from an endless--or even large--resource of spoons.

It's a great analogy. However, my issue is with people misusing it, which I recently encountered. The theory is not intended to be used by healthy or even relatively healthy people dealing with tiredness at the end of a long, full day of work or a random headache or other sporadic pain they experience--by this I mean things that are normal, explainable, and can be recovered from with a good night's sleep.

Please do not be so thoughtless and selfish as to refer to yourself as a “spoonie” or “running out of spoons” if you don’t suffer from debilitating chronic illness(es) that completely envelop your life. It’s demeaning to those of us who actually are “spoonies.”

It belittles the pain and suffering we deal with every minute of every day.

It puts your sporadic, healthy discomfort on the same level as our inescapable misery.

It implies that you think you, in your normal, passing tiredness or mild headache, are dealing with just as much misery as a real "spoonie" and therefore that the suffering of real "spoonies" is as temporary and normal as yours.

And it undermines the power of an incredibly simple yet profound analogy. There's little we can do to get across life with chronic illness(es), but this theory was a rare kind of victory for us. Please don't ruin it.

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April 9, 2015

The Full Story Behind "Home to Emily"

150 years ago today, the Civil War officially ended. But it didn't quite. There were still battles fought after that date, somehow, with soldiers wounded and dying after surrender was declared. My great-great-great-great grandfather was one of them.

Unfortunately when it comes to the stories of ancestors, the "full story" is often much more sparse than we'd like. But I do know a bit more information about Joshua and Emily than can be reasonably conveyed in a five-minute song, so I wanted to share those extra details here.

Joshua David Smith (born as best I know on October 27, 1818) and Emily Jane Beall (born as best I know on October 24, 1819) each grew up in Virginia, at least Joshua in the part that would later become West Virginia. I don't know how or when the two found each other, but they were married around 1840--the best I can find is March 5, 1840, so we're going with that until proven otherwise.

By 1861 The Civil War had broken out, and Joshua enlisted with the 11th West Virginia Infantry (Union) on August 18, 1862. He began service on September 21, 1862 and fought through the rest of the War, with a several-month break in 1864/1865 due to illness.

The war dragged on until mid-1865, and Joshua was wounded in a battle in April or May of that year, supposedly at the Battle of High Bridge, though I have conflicting info on exactly where and when. Just after the war ended, on June 4, 1865, he died of those wounds, leaving behind Emily, his wife of twenty-five years, and ten children ranging from three years old to adult (at least one of whom also fought and survived the war despite being wounded).

Joshua is buried in Hampton National Cemetery, a Veterans cemetery in Virginia, and Emily, who died February 3, 1892, is buried in Bethlehem Cemetery in Grantsville, West Virginia, both places which are pretty high on my list of genealogical sites to visit.

When I first got into genealogy back in my mid-teens (which experience you can read more about here), I somehow found Joshua Smith's picture online--not a terribly common occurrence in the quest for ancestral info. I understandably flipped out. I've tried to track down the owner of this photo in the past but wasn't successful, but one of a few sources of the photo is here. I also found a description of Joshua: fair complexion, black hair, brown eyes, 5' 6", and a farmer. I know much less about Emily (not even sure who her parents were), but I just so wish I had her picture.

If it's possible to have favorite ancestors, Joshua has always been one of mine. And since March 5, just a few weeks ago, was Joshua and Emily's 175th wedding anniversary, and June will bring the 150th anniversary of his death, along with the 150th anniversary of The Civil War's official end being today, I wanted to share their story here, along with the song I wrote about them. (Yes, I took a couple of artistic liberties with it.) Which, if it didn't lead you here but vice versa, you can watch here (I suggest making sure it's on the highest resolution so it's most readable):

This song is the product of a desire to tell my ancestors’ story, no budget whatsoever, and minimum resources availableI wish I had the physical and technological capabilities to capture this song in absolute perfection. So while you won’t see Hollywood quality in this production, I hope you see the love that went into it.

It's not all sunshine and roses, but neither was their reality. No doubt a lot of it was a nightmare, but no doubt there was also love, and love lives on.

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