!( - )

!( - )

December 4, 2015

Some Merry Christmas Music

Surprise! I've now added another of my songs to Youtube (see the others here), this one what I call my year-round Christmas Song. "Wonder of Wonders" covers the life of Jesus in 5 breathtaking (literally--you can tell my lungs are giving all they've got) minutes, and I'm happy to find that though this song was recorded a few years ago, I still love it. :)

As usual, the music and lyrics are by me, and this time the gorgeous accompaniment is by my cousin Olivia Eanes. At the time she lived 10 hours away from me, so she learned the song over the phone, wrote the accompaniment, had it recorded, and then I recorded myself with her track back home in West Virginia. I think all things considered, it turned out pretty well. ;) I would love for you listen, give it a thumbs up on Youtube or a like on Facebook, and share it with all your friends!

Image Map

November 14, 2015

Health Update: Your Questions Answered

I know I haven't posted a health update in a while, and that's because even though the battle continues every minute of every day, there aren't really new big details or developments to share. So to catch everyone up, I thought I would just take this last update of 2015 to answer the most common questions we (or rather Daniel, since he's the one always fielding questions for me while I'm at home in bed) are asked.

Did they figure out what's wrong with her yet? Yes. Many, many answers to the question of what's wrong with me were found in the summer. And while we keep doing periodic testing to see how we're doing and there will still be a couple of tests in the future when my body is ready for them, we are well past the diagnosis/testing phase. You can read my many diagnoses in these health updates here and here.

What is the main thing that's wrong with her? This is an extremely difficult question because it really doesn't have an answer. I have such a large number of things wrong, and which one(s) is affecting me the most is constantly changing based on treatment and other random factors. If you want to look at it as what are my most troubling/severe symptoms right now, I would say my sleep (see more below), lack of energy, liver and digestive problems, and hormone problems.

Have they found out anything new? Not really. As I said, we're not really in the diagnosis phase anymore--our quest right now is no longer really answers, since we have a lot of those, but more so treatment of them. So when I go back to the doctor every month and a half, we're not really looking for more causes but rather treating those causes and gauging how the treatment is going.

Are they treating her yet? Yes, I'm in the thick of treatment right now, as I have been for a few months now and will be for many more. Considering the depth and quantity of my health problems, I am not going to be noticeably better after only a month or two of treatment. I have found similarly sick people thanks to social media who had to go through several rounds of the treatment I'm doing before they noticed a difference, and I'm right now only about to do my fourth round. So yes, I am being treated daily--it's just a very, very long process. There is not a timeline on my recovery, and we have to just take it one day at a time.

How are they treating her? I am being treated by an alternative doctor who combines functional medicine with chiropractic neurology. In the past I have put up with my share of mainstream treatment and prescriptions and found that route to be not only woefully ineffective but damaging. The medical world sees me as just having "Fibromyalgia" and throws pills at some of my symptoms, while alternative doctors identify all the infections, viruses, imbalances, and deficiencies teaming up against me and relentlessly treat each individually. My current treatment consists of lots of supplements that continually change based on my body's needs and Field Control Therapy (FCT). I cannot explain the latter to you at this time, as it is way too deep for me, but I have found similarly chronically ill people who have sung the praises of such treatment and claimed it to be life-saving. 

Is she doing any better? The short answer is not yet. Considering all that's wrong with me and how long I've been sick, it's way too soon to expect a big difference. I can personally tell some very tiny things happening, but not enough to articulate, and I did have a large setback in September and October when a horrendous cold shot my already-shot adrenals even worse than they already were. As with any chronic illness, I have awful days and I have so-so days (which I normally don't realize are happening until after the fact). But one okay day (or one out-in-public day) does not mean that's my new normal or that I'm feeling good, and I'm still trying to learn that one--or many--awful days does not mean failure.

Is her sleep still messed up? Yes. My body's default is still the opposite of what is normal. It wants to sleep during the daylight, and I noticeably perk up around the time everyone else is heading to bed. That is one of my biggest issues, and one that we are continuing to combat. It has to do with serious adrenal fatigue and my nearly nonexistent cortisol levels. I feel like if that could be fixed, many of my other problems would follow it, but we have to fix it first.

When does she go back to the doctor? I go to the doctor three hours away about every month and a half. At those appointments we gauge how treatment is going and chart the course of treatments for the next month and a half.

What can she eat? I eat a lot of chicken and turkey and broccoli and plantains and dates and bananas and coconut. Partly because I have a lot of restrictions but even more so because those are my favorites...

My current favorite: turkey burger with plantain fries and onion, with coconut curry dip (not pictured). *Heart eyes*

But it's probably easier (maybe not the best word there) to list what I don't eat: gluten (wheat, barley, and rye) and grains of any kind (like corn and quinoa and oats), dairy (except eggs), soy, apples, peaches, oranges, and strawberries, chocolate, most nuts, most nightshades (like potatoes and peppers), yeast, sesame/chia/flax seeds, refined sugar and artificial sugar, and table salt.

There's more but those are the main ones. But trust me, I'm not starving. Why do I not eat those? Mostly because my body is screwed up. I have a leaky gut which makes it extra sensitive to everything under the sun, so we are currently healing it by removing the foods that contribute to the damage/my body finds hard to handle. Some will be allowed again eventually, and most will not. But I am also simply allergic to several of those (I have Celiac and my body makeup does not do well with nightshades). And a couple of those I strongly believe no one should eat--there is proof that they do much harm to our bodies. And if I've learned anything in my quest for health, it's that no food is worth negative consequences, huge or small. It kind of takes away its appeal when you know what it will or could do to you.

What can I do to help? This post attempted to answer that question.

I hope you all find this helpful and informative, as I've tried to recall the most common questions. If you have any questions that aren't answered here, please feel free to ask them in a comment here or on Facebook.

It probably goes without saying that this is all incredibly hard. Just going to settle for that unfitting description. Yes, we're in treatment with the possibility of at least semi-health on the distant horizon, but that really doesn't make the day-to-day pain and suffering much easier. So much thanks to those who have let me know you're praying and shown that you care--you know who you are. :)

Image Map

October 24, 2015

Lots of New Happy Things!

It's been about a hundred years since I've posted something other than a health update, so here we are! I've got three exciting, non-health announcements to share!


The 3D Eloquence Collection has finally come to Katya Valera! You'll never know how many hours, and months really, of planning, designing, creating, and anticipating went into this collection. And I'm so glad it's finally revealed!

This collection currently features four 5x7" original poetry prints with matching sterling silver necklaces:

"And He Shall Be Like a Tree..." with tree charm necklace available here

"Why Dance When You Can Fly?" with bird charm necklace available here

"Meteor Shower" haiku with frosted glass "meteor" charm necklace available here

"A Doubtful Drought" with water droplet charm necklace available here

I think "Meteor Shower" and "A Doubtful Drought" are my favorites. :) These items come with upgraded Priority Mail Shipping and would make great Christmas gifts!
Next, I wanted to pass along that in the interest of simplicity, my second and third Etsy shops have been combined into one. KV Designs (which has a new logo that I just love, by the way) still contains premade blog designs, shop designs, logos, and allergy cards. But it now also features The Streetlights at Midnight Collection (featured here a while back), which includes my original, printable quotes and greeting cards.


The Facebook page for Streetlights at Midnight has now been updated to KV Designs to reflect this change. It was quite the undertaking to combine the two at first, but I do believe the change makes more sense. :)

And finally, back to Katya Valera, don't miss this Freebie Special! Through the end of October, you'll receive a surprise gift with each necklace purchase! The surprise could be earrings, a bracelet, a ring, or another necklace. Just be sure to mention "freebie" in the note at checkout--no coupon code necessary. And if you decide to buy multiple necklaces, you'll get multiple gifts, one for each necklace purchased! Check it all out here.

~ ~ ~ ~ ~

I think that's all for now, and I'd say that's plenty! Be sure to check out the changes (and newest quote printables) over at KV Designs, and I would just love for you to like the page on Facebook if you haven't already. And be sure to take a look at the new 3D Eloquence Collection at Katya Valera, and take advantage of some free jewelry!

Image Map

August 11, 2015

Health Update: More Diagnoses + Making Progress

It feels like forever since my last Health Update post, and in a way it has been--I finally had my next appointment with my new doctor last week. Scheduling conflicts + life = way too many delays. Anyway, it was quite eventful, much like the last appointment:

- We got back the results of my two remaining tests.
- We did some testing to determine what progress (if any) we've made thanks to my three intense days of treatments in June and my many new supplements.
 - We left with lots of homework.

Here's what we found out:

The bad news:

  • My hormone test results showed that, of course, my hormones are all out of whack. My adrenals are shot and my cortisol levels are ... practically nonexistent. Your cortisol, which is in essence what gives you energy, helps you sleep, and causes your sleep cycle, should spike very high in the morning and then go down as the day goes on. Mine? Behold for yourself:

See that black line with the blue section? That's me. It's so unnoticeable I didn't even see it at first when the doctor showed it to me. Regarding how this problem impacts my body, let me just quote my doctor's report:

     "Your cortisol never has a chance to ramp up properly to help drive you to and from healthy sleep cycles, 
leading to the severity of the symptoms you feel."

In other words, this is why I have no sleep cycle. I just sleep when I sleep, not according to any kind of clock, because my body doesn't currently have one. And my inability to have a sleep cycle is just exacerbating all of my other symptoms. It is no wonder I have no energy--added to the umpteen other problems going on in my body, it is a wonder I can do anything at all.

  • I have many, many gene mutations working against me, which we'll be working to improve. I already knew I had one but it turns out that's just the tip of the iceberg. That's the short story on that. 

The good news:

We are actually making progress! Of course answers are progress in themselves, but actual improvements are even better. And even though I am not improved in any obvious way, the testing showed that the virus in my gut has diminished and the petroleum that was attacking me is not doing so now. Can you say progress?!

What's next:

I was sent off to get my Vitamin D checked again to see how that supplement is going (yay more bloodwork!), do a few at-home tests, and also do four more days of FCT treatments, two this week and two next week, like the three days that I did in June. I'm planning to begin those tomorrow, so I'll be disappearing again here for a few days while I get through those.

I'll go back a month after the four days of treatments, retest, and see how we're doing. This could go on for a very long time.

~ ~ ~

The goal of treatment is, of course, to get better. In the interest of that, I decided the other day to write down all of my symptoms. You know, in case someday I am better and forget just what I dealt with daily. Everything that's happening in our lives is so vivid at the time that we think we'll never forget it, or at least I do. But time goes on, and I'm finding I don't. And if I do get better, I want to never forget not just that I was once sick, but how much better I am.

I have about 75 symptoms. This is just what I could think of in one night.

I have been sick for so long, I cannot even imagine being healthy. Almost like asking a blind person to imagine being able to see--they hear it's wonderful, but it's totally unfamiliar and unknown, maybe not even grasped. That's how I view being healthy. Such a huge, unknown, unfamiliar world. But I'll gladly welcome it if it comes.

This go-round with treatment is completely different from the last one. Last time, I was completely at a loss before finding that doctor and thought there was no hope for me. Then hope was dangled, and I eventually but eagerly grasped onto it like I'd been given new life. Then somewhere around month three, it hit me: I wasn't actually going to get better. We continued several more months of treatment, but my intuition was correct. It turns out I'm simply sicker than that doctor, brilliant as he was, was able to conquer.

This time around, we are just as desperate but even more hesitant to really get our hopes up, knowing what happened last time we did that. I don't know for sure that this treatment will help me improve, much less get drastically better. But this is the first time I've seen that I have every reason to. I am convinced every time I see this doctor that he knows what he's doing and that he's digging far deeper than any other doctor of mine ever has--deeper than I even knew you could go. I don't know if I'll really improve, but I know that I have every reason to.

Image Map

July 27, 2015

Announcing: Streetlights at Midnight

I mentioned in my last post that it's hard to believe there was ever a time I didn't know what Etsy was. It's also hard to believe that I am now announcing my third Etsy shop!


It's true: I began with Katya Valera in 2011, added KV Designs last summer, and now Streetlights at Midnight is born!

While this is my third shop, it is the first where I feel like I might actually be putting my degree to use! You know, that thing I killed myself worked four years for. And while I have had a couple of greeting cards published by a greeting card company in the past, I have tons more where they came from. But I've found submitting greeting cards to be difficult, time-consuming, and disappointing. So why not sell them myself?

"Hard to See the Sun" card available here / / / Also available in a quote printable here

This new shop offers original, instant download, super-freaking-affordable, just-print-and-fold-in-half greeting cards for all kinds of occasions and also 5x7" and 8x10" printable wall quotes. Plus all the designs currently listed are black and white--perfect for us lucky ones without color printers!

"Big Hug" card available here

I've been working on filling this shop for a while and there are plenty more to come. But to quote Monica, "I am just one tiny person!" so just hang on as I add more, very slowly but surely.

"My Healer" quote printable available here

Currently offered are Birthday, Encouragement, Love, Miss You, and Thinking of You Cards, along with Chronic Illness Cards. That's right--cards written specifically to give to your chronically ill loved one. I know it's hard to know what to say or do to help--so I've made it easy for you (in addition to writing this post). And being ill myself, I have a good idea of what we need to hear! Plus, my Faith, Life, and Love quote printables also include chronic illness-related quotes. You're welcome!

"Don't Know What to Say" card available here

Plus, as if the prices weren't already insanely low, I offer four Bargain Bundles on purchases of 2 and 3 cards and 2 and 3 quote printables!

"Coffee x Chocolate" quote printable available here / / / Also available in a card here

"The Bird" quote printable available here

You might be wondering what on earth Streetlights at Midnight has to do with Katya Valera and KV Designs. Well it doesn't. ;) It's its own happy thing for its own happy reasons. You can read the story behind the name on my shop's About page.

"Happy & Blessed" quote printable available here

And one disclaimer I must include: In case you're thinking "How on earth is she running three shops? I thought she was sick??" Please take a look at this post. :)

I hope you'll hop on over to Streetlights at Midnight and take a look around--everybody needs a card for some occasion or another. And this way you don't even have to leave the house to find it! And quote prints are the perfect touch for your bedroom or collage wall! I'd also love for you to give my shop a like on Facebook so you can see all the new additions as soon as they're listed. You can also follow me on Instagram for such updates. Happy shopping! :)

- - - - -

New to shopping Etsy? Take a look at this post for 5 tips to make your experience much smoother. :)


Image Map

July 23, 2015

5 Etsy Shopping Tips to Improve Your Experience

It's hard to believe there was a time that I didn't know what Etsy was. But I still remember first hearing about it in college. You don't want to know how many times I have made purchases there in the last four years (I get most of my supplies there, okay...?) , and I've also been running Katya Valera since 2011 and KV Designs since last summer. It's safe to say I've been around the world of Etsy.

I've had some wonderful experiences and I've also had some horrible experiences as both a seller and a buyer. So I wanted to share some tips for shopping on Etsy that I've been storing up for a while now. I guarantee you that employing these 5 tips in your Etsy shopping will greatly improve your experience--and also that of the sellers you deal with.

1 - Pay attention. This seems so obvious yet is so neglected: Be sure to read the full listing to know exactly what you're getting. If there is any measurement listed or photo illustrating it, pay attention to it. Whip out your measuring tape and double check that it's really the size you think it is. We immediately form a size assumption in our minds, which may be completely wrong thanks to luck or a poor or otherwise fluky photo. I have bought supplies before and been unpleasantly surprised that they were not the size my brain had decided they were.

Also, be sure to look at all the photos of the item. I've gathered from multiple selling experiences that I think it's not a known fact that there are multiple images (up to 5!) of the product in a listing. You can click through them using the tiny white and gray arrows on either side of each photo, and there's also a row of the photo thumbnails at the bottom of the photo you're looking at. Please click through all of them--they often show more detail, size references, and angles that will often answer questions you have and help you envision the product much better.

Once you've read the whole item description, you'll also see if it directs you to do anything when you make your purchase, like include certain info in the note to seller. Don't forget to do this, as that info is crucial to filling your order promptly.

2 - Cover all the bases. At least glance over the shop's policies--a no-return policy may be the tidbit of info that determines whether you check out or not. Also be sure to check the announcement in their storefront and also their social media accounts and blog (usually linked to at the bottom of their about page). There are multiple reasons to check these, including making yourself aware of a production delay announcement or even a sale or coupon code! Always look for the coupon codes. Always.

3 - Educate yourself. This sounds a lot harder than it is. But it's not. Before messaging a seller asking for a price quote or really any questions, take a look around their shop first. Look at their shop sections and click on the applicable ones to see if what you're looking for is there. Or take advantage of the search bar at the top of the shop. I have had more than one potential customer ask me how much two or three items they're interested in would be together--when they're all listed in the shop. So take just a couple minutes more to look around before messaging a seller--your answer might be right there in front of you. You'll save both yourself and the seller time in the process.

4 - Be clear. If you're contacting a seller for any reason, be as clear as possible. Reread your message before sending to make sure it makes sense and that there aren't any gigantic typos.

If you're requesting a custom order, be as specific as possible. Don't assume the seller can read your mind or infer what you're wanting from just a couple details. If you purchase a custom listing, be sure to answer all the items requested in the item description, as mentioned above, and also all the questions the seller asks you. Reread everything the seller messages you to make sure you're answering every single one of their questions. I often encounter customers not answering my questions about what they want in a design, which greatly drags out the process and causes frustration on both ends.

5 - Always Respond. If you ask a seller a question, be sure to thank them for their response. If you're in communication with a seller about a potential purchase and change your mind, whether one or ten messages in, please let them know. Simply tell them you've changed your mind and thank them for their help. If I had a dollar for every time a customer has asked about an item and never messaged me again or even come out and said they would purchase an item the next day and then disappeared, I could probably nearly pay all my doctor bills. Okay not quite, but pretty close.

In a nutshell, pay attention and be considerate. Those two simple rules alone will go very far in helping you have as smooth of an experience as possible shopping Etsy.

Speaking of Etsy, I have a big announcement to share very soon! Since this post is already a short novel, I'll devote a whole new post to it. Stay tuned, and in the meantime, I wish you much happy shopping on Etsy!

Image Map

July 4, 2015

5 Things That Don't Mean We're Okay

Life with chronic illness(es) is the craziest, most unexpected tightrope walk. First, life as a "normal" person is turned upside down (which greatly reduces the ability of those around you to identify with you), and often the illness is invisible, which causes many to simply not believe that you're as sick as you claim.  All of that is plenty.

But then there's also this funny little rock-and-a-hard-place struggle: for example, do I let myself appear "okay" by actually putting effort into my appearance when I miraculously do go out (the option I tend to go with) or should I show up looking as bad as I feel, since somehow makeup and clean hair seems to equate with wellness? It's a tricky thing--grasping at chances to live in simple things like posting a well-articulated paragraph on Facebook, having a good laugh, talking about things other than sickness (yes, I do talk about other things sometimes...), or seemingly bigger things like going on vacation (haha) or opening an Etsy shop.

I hate that I even feel the need to point out these things, but it has hit me more than once that my appearance, timed-just-right clarity of thought, or momentary positive mood seem to be, to those observing me, little strikes against their (already low) confidence in the truth of my claim of being very, very sick. (You'd think all my test results would be sufficient proof, but seeing is believing I guess, and you can't really see things like Babesia and metal poisoning, huh?)

So to that end, please soak in this non-exhaustive round up of things that do not mean we're lying okay:

Articulation/Ability to Communicate Well | I have found myself in the middle of a conversation in a rare moment of a clearer-than-usual mind with a large percentage of my old levels of articulation. I often (but by no means always) am somehow able to verbally rise to the occasion. And I can't help seeing myself, and hearing myself, as those around me must. I realize in those moments that I certainly am not talking like a sick person (however a "sick person" is supposed to talk).

Laughing | I've mentioned before that those of us who are sick are probably the ones that laugh the most/loudest. I've found my laughter to just get louder as my years of sickness have gone on--in no way representative of health but rather of my even higher need for something happy and a few-second-long mental break from everything. I laugh a lot. Only because it feels good and I need that. Smiling and laughing have little to do with someone's health or pain levels. To put it honestly, those with chronic conditions simply become so strong from all the suffering that, yes, they can still laugh and smile while in pain, which says not that the pain is low but that the need for relief is high.

Getting Out | I don't have to worry about this coming across the wrong way too much because I'm lucky to leave the house once a week. But when I do, I usually go "all out" as far as appearance. Hair fixed, makeup, jewelry, and a dress. Which often results in me more "dressed up" than those around me. Which must mean I feel better than they do, right? No, all it means is if I'm out, this love-to-dress-up girl is gonna wear what she wants to wear, technically appropriate or not.

Technological activity | Technological socialization is all a lot of us spoonies have. And I find typing on a keyboard almost always easier than holding a phone and talking on it. So my whole body can feel like death, but I'm usually able to at least sit in a recliner and move my fingers at my laptop. Such "activity" in no way suggests any other type of activity whatsoever. When I'm not able to do anything else, sometimes I have to express myself via social media simply in an effort to stay sane.

Further, every time I post something non-health related or--shocker-- something happy on social media or my blog, I can't help feeling like it subconsciously registers with people: "Oh see, she's fine." Trust me: that is never the case. Our illnesses are always, always there, even if we're not talking about them at the moment, no matter how much we wish ignoring them would make them go away.

Announcements that imply activity | You probably know by now I'm a helplessly creative person. I can't believe the creative outlets I've added to my life over the years that I had never even thought of before, and that fact makes me scared wonder about all the things I'll continue to dream up as time goes on. But every new pursuit that is public in any form makes me wonder if, as mentioned above, people see those pursuits or accomplishments and think, "Oh see, she's fine."

But you need to understand: I have no "real" job. None of my Etsy shops are booming by any stretch of the imagination. (And keep in mind: I'm the boss of those shops--my productivity, work schedule, and "vacations" are totally at my body's whims.) And my life revolves around those whims and my very messed up sleep schedule, doing dishes and laundry when I can, fitting in multiple doses of multiple supplements at the right times daily, and attempting to keep both my husband and myself fed. Seriously. All of that is my every day. And as little as that seems to be, to my body, that is a whole freakin' lot. And it gets overwhelming, and some days I can't even do half of that.

But some days--or nights in my case--are better than others. And that healthy girl who lives buried in me somewhere is begging to come out and create, and always sometimes I just have to listen. So when I upload a song I manage to record or share a looong blog post or add a new line to one of my Etsy shops or even open yet another shop, just know: those accomplishments were all done in one lucky day or in momentarily able fragments out of many days and are representative of two things: a fleeting semi-able moment that was seized and the need that all of us have to take a break from the grind of life and do something that we love. And for me that comes in the form of those things above. I try my best to give myself tiny chances to live when I can--and you're probably going to see all of those. But know that they are not the norm. They are just the moments you see.

We are never fine. However well you guesstimate we are based on our appearance, abilities, or assumed activity, one thing is safe to assume: we are probably a lot worse than you think we are.

Image Map

June 16, 2015

Health Update: What's Really Wrong with Me

We just got back from a beach vacation with my in-laws, where I, in true spoonie fashion, ended up having to spend much of the time in our (very nice) room. I made it to the ocean twice the roughly five days we were there, only once to actually get in it, and spent the days following each trying to recover. I couldn't help half-hoping that the next time I go to the beach, whenever that is, will be completely different from this and the last time I went, the only two times I've been to the beach since becoming so sick.

But meanwhile the time has come for another update:

As if it was not already clear as day to me that Fibromyalgia is just a label that doctors give to people with more problems than they can or want to attempt to help, a conclusion I arrived at with my first go-round with the functional medicine approach in 2013, I even more firmly believe so now. There are so many things wrong with me that to think they could all just be summed up with "Fibromyalgia" is just absurd.

Just to briefly catch you up:

- I saw a functional medicine doctor back in fall 2013 for the first time for approximately six months of treatment until we moved. While most of his patients vastly improve, including my mother who has an amazing success story, I was one of those rare ones who just did not respond to treatment like we'd all hoped and expected. He admitted that I was the most difficult case he'd ever seen. Turns out that's because I'm extra sick.

- Since we moved, we have now begun treatment with another--brilliant--functional medicine doctor three hours away. You can read more about this decision in my first health update and the tests I've had done to begin treatment with this doctor in my most recent health update. And now that we've discovered umpteen new issues that my last doctor didn't catch, we now see why that treatment did not bring the results it should have--I had a lot more to treat that we didn't even know about.

So here is where we stand now:

I was able to finally go back and get the 12 vials of blood retaken three weeks later--on our 3rd anniversary--and those results thankfully came through fine. But in an odd twist, it turns out the first results were actually somewhat reliable, so we have the confusion benefit of two sets of results for the cost of one. Lucky me! My hair test results for metal poisoning have also come back. We are still awaiting results to determine all of my gene mutations, along with a test for thyroid and hormone issues. I also had my first round of QRA and Field Control Therapy done, to determine what organs have what issues and what needs to be done about them.

While I thankfully do not have Lupus, Epstein Barr, or Rheumatoid Arthritis, though I am currently headed toward the latter in the future if not addressed, we have found tons of issues and haven't even finished all of the testing that will be done, such as checking for past head trauma. For now, in addition to many, many, many smaller, harder to list issues like thyroid, iron, white blood cell, B-12, Vitamin D levels, adrenals, ph imbalances, and possible hypoglycemia, etc., we have found the following:

- I have serious autoimmune issues--my soldiers are in overdrive because of infections and so are overworked and attacking everything.

- While I do not have classic Lyme Disease, I do have a Lyme co-infection, Babesia, likely contracted from a tick bite, spider bite, etc., at some point. I pretty confidently am going to point to one of two rather suspicious bug bites I had when I was around 12 years old. This infection is at least attacking my liver, if not more, which we will determine in the future.

- I have a virus lodged in my gut, likely leftovers from chicken pox, which I had when I was 5 years old.

- I am being/have been exposed to petroleum and am reacting to it, of all things (it's actually in much more common items than you'd think), as it is attacking my uterus and possibly more, which we'll determine down the road.

- I have Leaky Gut Syndrome and likely Celiac Disease, the former of which will be treated with a different supplement than I used last time, as the QRA testing revealed my body does not respond to Repairvite--that's why it didn't work.

- I have mercury poisoning. While most people's culprit for that is amalgam fillings, I don't have those--my assumed culprits are childhood vaccines containing mercury and spending much of my childhood at my grandfather's dentist office, where my mother was his dental hygienist, so I was frequently exposed to the fumes.

As I mentioned, gene mutations and hormone issue results are pending, along with a test for past head trauma/concussion in the future.

What's next is three intense days of several powerful treatments of my infections beginning this Wednesday and several on-going supplements to address my other issues, with more QRA and FCT testing in a month to see how we're doing, at which point I'll also begin repairing my leaky gut--hopefully successfully this time.

It is rather shocking to me to think that I have Babesia and mercury poisoning, for example, and likely have for years and just never knew that was what was wrong with me. It almost makes me upset, like, Why didn't we seek treatment for this sooner? But the truth is that the diagnostic tools and treatments I'm doing are more recent developments and weren't really being offered years ago. So there's nothing I could have done. We've gotten on this path to treatment as fast as we possibly could have. 

It's also a legitimate question to ask what virus/infection came first/where all this even came from. And we don't really know--the point is that we know these problems are there and we're going to do everything we can to remove/suppress them to get my body to its maximum functioning potential. But since it's my body and history we're talking about, I have to guess-reason through it all just for my own sanity. And in my limited understanding I would think I started out with gene mutations, obviously, from the start (we know I have one and are waiting to hear on others, but I would bet money we'll find I have more) that already had my body not functioning correctly, followed by mercury poisoning that further weakened me, with chicken pox coming during that continuous poisoning that lasted all through the first ten or so years of my life, followed by the bite that gave me Babesia, and by that time I was just too weakened to fight what I had and anything new that came along. It all really makes me wonder how I function at all, and also pretty well indicates if I'd not sought this treatment, I would simply continue to worsen over time, until who-knows-what happened.

Right now, this treatment process seems so. horribly. long. But that's how it seemed the last go-round, and it went by eventually. Plus we have a much better chance of actually helping my majorly sick body than we did last time, simply because we're finding so many new issues we didn't even test for before. I feel like last time we just scratched the surface of my issues, and this time we're going to dig and dig until we get all the answers.

I hope to write a post on an emotional aspect of all of this at some point but wanted to update you all with what we know so far. And if you don't hear from me for a while, you'll know it's because I'm hunkered down getting through these first treatments. I am just thankful for answers at this point--now to do more waiting to see if doing what I'm told will yield results this time around.

Image Map

June 3, 2015

5 Little Ways to Hugely Help Those with Chronic Illness

I recently shared three ways that chronic illness is painfully isolating and lonely. It was an attempt to give an honest glimpse of what my life--and the lives of thousands of others like me--is like.

Now I'd like to share what you can do to help your loved ones living with chronic illness. As I write this, I feel like this list is a no-brainer. Yet that may be the case simply because I'm on this end of the issue. Either way, I hope this list falls into the hands of people who want to help those with chronic illness and aren't sure what they can do.

Now, I do have to put out there first: this list is intended for people who truly care. Don't let this list guilt you into saying things or doing things you ought to do just because I'm saying them. While the little things are priceless, because-I-should offers or comments aren't really helpful. If you truly don't care, then don't pretend to, and if you do, please show it.

A very well-meaning someone asked me once, "What can we do to make you feel better?" as if there were a way to fix it all. I was so thrown off by the unfamiliar question that answering with, "Just pray," didn't even seem right. So I gave the honest answer: "Nothing." There's nothing you can do to make things all better, but you can do so many little things to help along the way--and those little things are priceless.

1 - If you pray for them, say so. I don't want to say that praying alone does no good, because of course it does. But it does twice as much good if you actually let the person know you're praying for them. Praying for them but never saying so--particularly saying nothing at all--leaves the ill person with the understandable though incorrect assumption that you don't care or haven't noticed their suffering at all. Be it in person, through a Facebook message, or by snail mail, please let them know if you are praying for them.

2 - Mail is underrated. Speaking of snail mail, the old classic is still just as meaningful now as it was long before the Internet existed. Sending your ill loved one a card, a package, any little something out of the blue is so meaningful. And it tends to arrive right when they need it most. I have a friend who sent me a necklace and a note out of the blue a few months ago, and she could have sent me a smiley face on a post-it note and I would have been just as happy--the gesture alone meant so much to me. (You know who you are! :)

3 - Reach out first. We the sick are aware that our life happenings aren't exactly pleasant to hear about. For that reason, we're going to have a select few people that we tell our happenings to. We're not going to dump it all--or even a small fraction of it--on just anybody. I'm not going to just volunteer the information on how I'm doing, how much pain I'm in, how upset I am about upcoming tests, how rude a doctor was to me, etc., simply because things like that are just selfish to unload on anyone. Yet I do want to talk about it. If you want to know how I, or any of your chronically ill loved ones are doing--like really doing-- you have to ask. And there's a good chance they're wanting you to.

4 - Please ask questions. Along those same lines--yes, ask questions! "How are you?" is the most vague, impersonal thing you can ask. We are all trained to say "Fine" to that, an option I tend to go with simply because it's easier and/or I know the person asking doesn't really want to know the full answer to that. But if you do want to know, then by all means ask!

And beyond that, if there is anything you're curious about or confused about, please feel free to ask! Any questions show that you care and want to understand. Don't just sit at home wondering something--you'll be able to stop wondering and also encourage the person in the process by your interest.

5 - Donate. Offering to clean, pick up groceries, or drive your ill friend to the doctor are just a few ways to donate your time that are a huge deal to the ones receiving your help. And while I know I said the little things are extremely helpful, I have to include one big one: Chronic illness is expensive. I don't even want to know how much money has gone into my medical expenses just in the three years we've been married. But I do know how much my initial upcoming tests and treatment are costing--and those have been made possible by the grace of God in the form of a few very generous family members. As I have said to someone before in regards to donations, I don't turn down free money. As much as I wish we didn't need help coming up with thousands of dollars, I realize that it's God's way of providing the money. And if you know someone who's sick and facing medical bills, you too may be the way God provides that money--even if seems like a small amount to you. It doesn't have to be big at all. Every little bit helps and is felt so deeply.

There are certainly many more ways that could be included on this list, but these are the main ones that stand out to me. Want to go even deeper? I recommend these posts by Rebecca at Caravan Sonnet: 12 Things to Pray for Someone Struggling with a Chronic Health Condition and 17 Ways to Help a Friend with Chronic Illness During the Holidays, the latter of which can also be more broadly applied to all year long.

So if you have a chronically ill loved one and have ever felt at a loss of how to help, I hope this list has given you some insight. We know you can't make everything all better, and we don't expect you to. We simply need to be reminded that you care and that you're with us in this very lonely struggle. It is truly the little things you can do that help keep us going.

Image Map

May 27, 2015

3 Ways Chronic Illness Is Isolating

Chronic illness is many things. It is painful. It is expensive. It is confusing. It is heartbreaking. But one thing it is that I'm starting to realize just magnifies the longer you're sick is this: It is isolating. In many ways.

Socially || Many people with chronic illness are not able to hold a job outside the home, so any social interaction that would come with that is gone.

Further, those with chronic illness don't get to leave the house much, for things like grocery shopping, date nights, or anything, because they are not able. With so few spoons a day, being able to get out for anything besides doctor appointments is a luxury. This results in the vast majority of their time spent alone. Yes, technological socialization helps and is all a lot of us have and can be both a priceless outlet and connector to those we love. But we all know it's not the same.

So you have the no job thing giving you little reason to leave home and the so few spoons thing keeping you at home when you would otherwise go somewhere. Then add in any increased self-consciousness brought on by any abnormally visible proof of your invisible illness, say weight gain, skin issues, or hair loss, and you're really not going to be leaving the house much. I commonly am home for weeks at a time.

And the longer this goes on, the more isolated you become.

Other things that are second-nature to the average person are often off-limits to those who are sick, besides being able to leave the house, go shopping etc., such as going out to eat or simply eating the food served at a family get-together. Due to allergies and sensitivities, many foods that the average person would never think twice about eating become off-limits--whether we like it or not. This means little to no trips to get fast food and precious few (if any) meals at restaurants. We frequently or always have to bring our own food to events--you know, if we're even able to go--and if there's a restaurant that offers enough options, we have to make multiple odd requests when ordering.

I have been surprised to notice that this can somehow be taken as an odd kind of arrogant when we say, "Oh, I can't eat that," when in reality it's just one more way we're trying to combat our illness and take care of our bodies. Saying no to a food does not mean you think you're too good for it or better than those who eat it--it means either you're allergic to it, you know it's much better for your body to not have it, or that your body is so sick that you're lucky enough to have Leaky Gut Syndrome, a condition where your intestines are so screwed up that they react like you're allergic to a food. Eating out or eating together as a family is a very common, enjoyable way people get together and socialize and something that is just part of the American life--and it's just one more normal experience rendered abnormal or nonexistent for those of us who are sick. And that is something that the average person just cannot understand, which leads me to the next way that chronic illness is isolating.

Experientially || Let's face it: there are more healthy people in the world than there are chronically ill, whether house-bound or nearly house-bound. While chronic illness is not a rare thing, it's certainly not the common experience. People magazine recently published a story about Avril Lavigne and her battle with Lyme Disease. And while I am so sad for her but so glad a major magazine covered her story, I couldn't help noticing the underlying tone of disbelief at what she has dealt with:
"I was bedridden for five months." 

"The Canadian singer has been recuperating at her home in Ontario, where she spends time with family, watches movies and keeps up with fans through social media." 

"Her mom moved in to help take care of her, while her husband ... stepped in when he could during breaks in his tour."

"There were definitely times I couldn't shower for a full week because I could barely stand," she says.
I know this article was written objectively with the attention-getting highlights included. But I can't help feeling the writer's kind of distanced marveling and that all of these details were as foreign to the writer--and to the publication's audience--as deciding to go live on Pluto. Even though--as far as we know--I don't have Lyme Disease (test results to come this summer--stay tuned!!) all of her comments registered multiple mental head nods with me. I haven't felt exactly what she felt, but I certainly understand the general misery. And I know that understanding did not register with the majority of readers.

All of that to say, the chronically ill life is all I know anymore. But most people mentally reel at even the thought of it--they haven't experienced it, so they aren't even minutely close to beginning to get it. Even if you meet and befriend half a dozen other spoonies, most of the people you know probably have no clue what your life is really like. And just knowing that is incredibly lonely and isolating.

What's more, I'm finding as time goes on and I live with this more and more, it doesn't get easier, I just inevitably become more and more isolated from everyone else. And every added experience--a new doctor, a new diagnosis, a new symptom, a massive amount of bloodwork all being "bad" for no reason and having to do it over, a traumatic test that demands way too much of your hair to the scalp--all experience on experience that pushes you farther and farther from identifiableness with those around you, more and more ways you are different from practically everyone else, and more and more reasons for others to not get you and not want to.

Emotionally || Of course, all of this results in severe emotional isolation. The emotional effects of all of the above are hard to put into words. But while we would not wish what we have and what we live with on a daily basis on any of our loved ones, knowing that they don't truly get it, some not even wanting to try and some trying their hardest but never quite being able to simply because they haven't experienced it, is very isolating and emotionally crushing.

When you grow up having everything in common with your best friend and then get deeper and deeper into this medical nightmare that, listen as faithfully as she might, she will never understand. When your struggle before going out is not deciding what to wear but agonizing over how to style around your illness-and-medical-test-induced lack of hair, what you need to pack to eat while you're gone, and if you can even go at all. When new problem on new problem keeps coming to the point that all you can think is What. the. crap. next? When you marvel at the thought of anyone living day-to-day without a thought to how they're feeling, or test results looming over them, or if that new symptom is nothing or something horrible--and then realize that that is indeed the average person's life.

It's a very lonely place.

I hope to be back with a post on how to help those you love dealing with this, but for now, please take this glimpse into the chronically ill life to heart.

Image Map

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!)

Image Map

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!

Image Map