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There is a Wisdom,
Buried deep in my bones,
A Gift,
Passed down to me,
From Ancestors of Old.

Today we call it a curse,
And fight and rail,
We give it names,
Arthritis and Migraine,
And call the wild Wisdom,
By another name: Pain.

But, is it, really,
Just the song my bones knows?

5,000 years ago…

…I would have been honored amongst my Tribe. I would have warned my People four hours ago that a change in the weather was coming, something I knew because I felt the change coming in my ears, my head. We would have had time to take shelter before the raging winds arrived, as they have now.

…I would be warning my Tribe now that an even bigger change was coming. I feel it, in my bones – in the bad knee and shoulder that suddenly twinge, and the deep ache in my bones growing sharper by the moment.

My bones know. They are singing to me, singing of the changes to come.

Tomorrow, the temperature here will drop from 35 degrees to something-below-zero, with wind chills of -30 degrees.

My bones are telling me that, a Gift that could have meant the life or death of my Tribe.

I can tell you when rain is within 50 miles and headed this way, whatever the season, by the pang in my shoulder. There was a time when that would have been very useful.

Now, I have no need of this life-saving Gift. Who does? We have the Weather Channel, and weather apps on our fones.

But maybe, it’s time I stopped complaining about the “pain” of my “reactive inflammatory arthritis” and “weather migraines,” and started thanking my body for giving me the warnings it was meant to give me.

It is only my body singing to me with ancient Wisdom.

Maybe, it’s time I started just listening, just being with the sensations, without labeling them as “pain,” and instead, think about what they would have meant a thousand, or five thousand, years ago.

Survival. Life. Or, death.

Maybe, it’s time I stopped running away, and just lay still, curled up, and listened to the Wisdom buried deep in my body.

I think it has a lot to say.

I wrote that last night, but then didn’t post it.
I was too busy, listening to my bones sing.

There is a craft to this, the listening, one I’m sure our ancient ancestors refined. Just as I know the approach of rain by my very reliable shoulder, what exactly was the singing in my ribs, my bad knee, then most of my bones, even into my hands, telling me last night? If I had no weather app on my fone, I would need to know.

Waking far too early this morning, writhing from the ache in my bones, with pressure in my head, I knew the temperature was soon to start its drop and more change was coming. I could hear the wind roaring outside. When I got up, I discovered that yesterday’s mild south winds, that had changed to west winds last night, were now hard and gusting even harder from the north.

My mind flashed back to reading about the “polar vortex” and coming “arctic plunge,” with temperatures so low that “if you are younger than 40 you likely won’t remember anything this cold.” I put that out of mind.

Why stay awake and thrash and fight the “pain,” when it is only my bones singing to me, with the ancient Wisdom, as the bodies of some have done for countless generations before me?

Instead, I thanked my wonderous body for the warning, and told it that I understood why my bones were singing, the Wisdom it was sharing with me.

Muscles relaxed instead of spasmed.
The song became a lullabye.
And then, I went peacefully back to sleep.

It will take time to break long-engrained habits – the tightening of muscles around the signals my body is sending, the labeling of those signals always as “pain,” fighting and avoiding them, causing my body to only send them out louder and stronger, more urgently. But, it’s a start.

I’ve wondered before if weather-related migraines were an evolutionary advantage – if a small proportion of members of a tribe had them, they would have been, I think.

But, I never tried to consciously work with my body, to acknowledge that its messages were received, other than to say, “yeah, that part hurts, I understand, you can shut up about it now.” The flare of inflammatory arthritis I’ve been having has given me a new incentive to work on how I deal with “pain,” and acknowledging it while in deep relaxation does help – to a point.

Maybe, only “to a point” because I wasn’t acknowledging the whole message.

Yes, my wise body, I hear the song in my bones now, and I understand. You’re right, a big change in the weather is coming, a dangerous one. Thank you for warning me. I am safe, warm, and protected – and listening.

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A post about getting through those moments you ask yourself: “What fresh hell is this?”, or beg, “Not again, please!” and, “When Food Is The Enemy”

Recently, yesterday I guess it was, but it seems eons ago, I managed to poison myself.

Not in the typical, swallow something toxic way, of course.

No, not me.

My poison?

A bowl of oatmeal. A stupid bowl of gluten-free oatmeal. A big bowl of oatmeal.

I knew almost immediately that I had made a serious error, as it first sat in my stomach like a brick, and then, the bloating and the pain and the overall “oh, crap, what fresh hell is this?” feeling came over me.

Like many with ME/CFS and Fibromyalgia, I have Leaky Gut Syndrome, which in some patients is labeled as only IBS – (Irritable Bowel Syndrome). I’ve got both labels, but today’s topic is Leaky Gut.

What that means, in very general terms, is that my intestines are far more permeable than they should be. Particles from foods I eat can enter my blood stream, and my body becomes hyper-sensitive to them. The more frequently I eat something, the more common reactions become.

For a more expanded discussion of this, see this post:
The Problem, The Plan, via Dr Z

I have quite a large number of items on “The List” of things I simply can’t eat. Oatmeal used to be on The List, but after avoiding it for a number of months, and then trying it again, it seemed to be okay.

Until yesterday. When suddenly it was not okay, and I have been enduring the misery of severe bloating (as in, looking 6 to 8 months pregnant), belly cramping, nausea, migraines, and an overwhelming toxic feeling ever since.

It is hard to define what it is to feel “toxic,” but in general, like you’ve been poisoned. Very weak, difficulty thinking, palpitations, nausea/vomiting, extreme migraines, on & on.

Note: To the family members of ME/CFS patients, I would just like to add: this, this horrifying misery, is why we don’t get excited about going out to dinner (if we’re able), or trying new foods. The tiniest bit of an offending food can lead to misery that lasts days – long after you’ve gone home.

So, what’s to be done when you’ve poisoned yourself with food?

Not much. Take a hefty dose of magnesium, which acts as a laxative, to move it along as fast as possible.

As long as it’s in your body, it’s going to be setting off your symptoms. So you need it out of there – and fast!

But mostly, you have to wait it out.

If your doctor (likely an alternative practitioner or LLMD) has indoctrinated you into the Gerson Therapy (the infamous coffee enemas), they can certainly help both move things along, as well as detox your blood.

Substituting chamomile for coffee, as explained in The Gerson Therapy, helps to calm intestinal spasms. You can also mix coffee and chamomile. Experience tells me that a slightly overly warm brew will produce better, umm, results.

For info on my own experience with the Gerson Therapy, you can see all posts tagged “Gerson,” starting with The Problem, The Plan, via Dr Z.

Breath by Breath. Moment by moment.

I wrote this to my mother earlier tonight, after two days spent complaining of being too nauseated to eat, and how awful I feel:

“Can’t think of much else right now except get through this moment, this minute, this misery. Its a thing my very ill friend, S., and I say. Just focus on this moment. Don’t think about how long the misery will last. Just get thru this one moment at a time.

“It’s how we keep from becoming another ME/CFS suicide statistic. If you think, “it will never be any better than this,” or, “this is gonna last forever,” or “I’ll never be any better than this,” or, “what’s the point, this is just gonna happen again & again,” that is the path to becoming a statistic.

“So when our heads are pounding, are bellies are churning, the pain is just so much we want to crawl right out of our skins, we say to each other, “Just get thru this moment. This one breath. Don’t think about the moments to come. Just this one moment.”

“And that is all I can do right now.”

I am very happy to report:
After my second round of coffee & chamomile today, the offending oatmeal has been well & truly expelled. I feel better already, although it will take a few days to get back to “my normal.”

Always remember: You can get through it. One breath, one moment, at a time. Just take a big deep breath… and let it go. See the pain/misery/illness/despair flow out with it. And then just take one more big breath…

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“Art enables us to find ourselves and lose ourselves at the same time.”
― Thomas Merton, “No Man Is an Island”

Recently, I’ve come to realize (again) just how much being chronically ill has stolen from me, and not just in the obvious physical sense.

Little bits & pieces of me, of who I am, have been slowly slipping away into the morass of living with ME/CFS/Lyme, etc., buried under the avalanche of chronic illness, a little bit (or occasionally a lot) at a time, as I slowly spiral downward.

And then I found myself again, all the little missing bits, in the most unlikely of places.

The loss of physical function, of ability, is the easy part to see.

I can no longer ride horses, garden beyond a few pots on the deck & my beloved bonsai, or even make a trip to the grocery store without seriously overtaxing my body. Those long hikes in the Woods are long gone.

Less obvious to those on the outside looking in are the loss of the ability to watch TV or movies because of sound & light sensitivity & the damned migraines. I had have my favorite sci-fi & fantasy shows & movies, and I miss them, though they wait patiently for me on the DVR.

Perhaps most of all, I miss the ability to inhale a good novel, to luxuriate in a fantasy world of warrior women, magic, and quests to be fulfilled, or to travel backward into history & relive the ancient past. I used to read upwards of 150 pages a night of a good book, but I lost the ability to retain what I read, and so keep track of plotlines and characters, about 10 years ago.

But the Amazon warrior woman within, the myths & magic I love so much, reside within me still, I have found.

Rather than be pushed away into the fog and forgotten, they beg to be brought out into the open, acknowledged, and, even, nourished.

They are part of who I am.

Exploring more, I re-discovered the thrill of seeing a beautiful vista from a far-away land, a gorgeous garden, an amazing animal, an unusual and well done piece of art, and so much more.

And so I have found myself again, I have awoken from my soul’s slumber, thanks to that unlikely source I mentioned: Pinterest.

For those who don’t know, Pinterest is a highly addictive online “pinboard” site, where you can create pinboards – collections – of images of things you like, and keep them neatly arranged in as many boards as you like. You can “follow” people who share your interests, and browse their boards, and repin what you like to your own boards. Most of the pins lead to websites, often of interest, too.

To be honest, I joined Pinterest because I saw friends joining, and didn’t really expect much to use it.

But then I discovered the world of imagery that resides on the web, the treasure hunt that is Pinterest, finding people who like the same things I do, and began luxuriating in the glorious artwork & photography the way I used to do with my reading, tv and movie watching, and travel.

During a bad migraine day, of which there are many, I barely feel like moving, and thinking is terribly difficult. About the only thing I can do at such times is to immerse myself in the fantastic art & images of the divine, creative DIY ideas, magical homes, forests & sacred spaces, found on Pinterest, all while barely budging from my pillow, on my smartphone.

As I collect and categorize, I am both losing myself from the pain of the migraine & drudgery of another day of “chronic-ness”, and also finding myself, the parts so long buried & lost, hidden away. But still there.

Buried, but still alive & well inside my heart & soul.

It’s been six months of pinning now, and I’ve found it to be an interesting & invigorating process, both spiritually & emotionally.

Hidden anger & grief has risen to the surface to be dealt with, as I see things that remind me of The Before Times, of things I used to do, places I wanted to see, but now can’t.

I thought I was over that aspect of this illness we call ME/CFS, over the loss of so much that was a part of my identity.

But seeing some of these images, these visions of the Past and hopes for the Future, served as a reminder to me that grief is a process, a spiral, not a circle – we don’t go through the steps of the circle and be over it.

Instead, we go ’round and ’round the spiral of grief and anger, mourning the loss of Life-As-We-Knew-It, and with each turning of the spiral, the grief in our hearts heals a little more, slowly, ever so slowly, fading away…

As I’ve wandered the spiral of grieving for my life, I’ve found Pinterest to be invaluable in renewing my hope and fueling inspiration.

Creativity has budded, and begun to flower.

Images and how-to’s fill my Creativity board of things I know I can make and do, albeit very slowly. I can revisit and refine what inspires me, as new pins are found and pinned, and not-quite-right pins are removed. They remind me that:

I can still create. I can still make beautiful things.

Another board reminds me of my deep connection to Nature, and is populated with images of wild women and wild places, prompting the sleeping wildling within to awaken.

With every visit, the fires of inspiration burn brighter.

Once upon a time, I had my very own, very large, herb garden, with just about every herb, medicinal and culinary, you could have. But for now, we have the Woods, some pots on the deck, and dried herbs that can be purchased.

Pinterest has re-kindled my interest in using natural ways for healing. The internet is full of tons of information on using herbs & foods for healing, and my board is a great way to organize all that info – and encourage me to try it!


When things are very bad, physically, I can drop myself into the sacred imagery, fantasy art, especially lovely places, or beautiful wildwoods that populate my boards, and hide myself from the pain & distress. I can distract myself from the boredom of living a life filled with chronic pain & exhaustion by going treasure hunting – for new & wonderful things to pin.

It is a refuge, a respite, and a renewal, that I never expected, but am very thankful for.

To see my entire collection, please visit me on Pinterest ~ and if you’d like an invitation to join, just let me know (it’s free).

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September is here, there’s a cool nip in the air at night, a few leaves are starting to change… Summer is coming to an end, and Autumn is beginning.

For many of my dearest friends, this brings a deep sigh of relief, and a hope that the worst is over. For almost everyone I know, it’s been a difficult Summer, full of one personal crisis after another, just as it has been for my family.

Sometimes, it’s hard to see the way forward when a crisis strikes, to find the Path you should follow. You look around in confusion and see only obstacles.

“Fauna” by Charlie Terrell

When I found this beautiful image of Fauna, Guardian of the Wood, I was reminded that, often, looking to Nature will help me find the clues and inspiration I need to find my Path again.

Sometimes, it is as if we stand in a deep, dark forest, surrounded by thick trees and brush, knowing not which way to go. We have lost our bearings, lost our way, lost our Path.

Fauna reminds us that when we find ourselves lost in the dark Forest of Life, to listen to our wild Hearts, and follow the Deer’s Trail, and we will find our way.

Deer Trail by Heather L. Loyd, via Flickr

What does that mean, to follow the Deer’s Trail? Well, the Deer are creatures of habit, and travel well-worn paths through the woods and meadows. Their cloven hooves cut deep into the earth, and pack it hard into a narrow dirt trail. Their paths often intersect and overlap with the paths made by humans, and many a hiker has lost the human trail when they veered off unknowingly onto a deer trail.

But deer also go places humans wouldn’t think to go – but could go.. They go over fallen trees, instead of being stopped by them, trees you might have to climb over. They go under bushes in perfect tunnels – perfect for their size, and for your’s, too, if you’re willing to scramble and crawl through where they go with ease.

Deer who doesn’t want to get his hooves wet!

Many’s the time I’ve run down a deer trail, barefoot, hair flying, as One with the Earth, being the Wildling I am in my Heart. And many’s the times the deer trails have shown me unexpected routes through, around, over or past obstacles.

Sometimes we look for a way forward in our lives, a clear trail, and seeing only our obstacles, we don’t see how we can do it, but if we’re willing to view them from a different angle, to scramble & climb, the Path may become clear. That is following the Deer Trail.

Once upon a time, following a deer trail literally saved my life.

Many years ago, when I was in my 20’s, my husband & I were looking for land to buy, and checking out Tennessee around the Smoky Mountains. We had already looked once at an incredibly beautiful and huge piece of land, something like 2-300 acres. Before we made an offer, we wanted to give it one final, really good, going over, since that’s a lot of land to check out.

We had parked our trusty Suburu at the gate & walked in, marveling at the forests, the open meadows, large cedar trees, beautiful big rugged stones, and a lovely lake. It was gorgeous, and I just loved it.

Poly Tunnel

Then we came to an area that had a tractor sitting by it, and a large tilled spot. There were three very long poly tunnels over it, the kind you use to protect plants from frost. It seemed to me that first frost should have been past, and I could see some of the plants were just about touching the tops of the inside of the tunnels, which were around 4′ tall, but I couldn’t see what they were.

So I took a look, as did my husband. They sure weren’t the tomatoes under my poly tunnels at home! No, they were pot plants, and each tunnel had plants in different stages of growth. The oldest plants were starting to bud, and were almost ready for harvest.

We looked at the sheer number of plants, looked at each other, realised our car was parked at the gate by the road, and said in unison, “We’ve got to get out of here, NOW!” It had to have been hundreds of thousands of dollars worth of weed, street value, if not more. This was backwoods Tennessee. We knew what would happen if we were caught up there – we’d just disappear. And nobody even knew where we were.

Then we heard the sound of an ATV heading our way, and decided we would be better off to split up – that way there was a higher chance at least one of us would make it out alive. We took off, running for our lives, in different directions, on land we didn’t know at all, this only being the second time we’d set foot on it.

I wound up coming to a hill that led to the creek that bordered the property, and I knew if I got to the creek I could follow it to the road.

Greenbrier Vines

My feet flew as I followed a deer trail down the treacherously steep hill, only to find, half-way down, that the entire bottom of the hillside, as far as I could see, was covered in a giant thicket of greenbrier, 6 or 7 feet high. It looked completely impenetrable, and to my eyes, the deer trail just ended at the edge of the greenbrier… until I leaned down, and saw it went into the greenbrier thicket.

I heard the ATV getting closer, and voices, but they couldn’t see me yet, so I followed the deer trail, into the greenbrier. The deer apparently aren’t bothered by the thorns, and I found a well worn tunnel they’d made, about 3′ high, with dirt on the bottom.

I crawled thru the greenbrier on hands and knees, while it grabbed at my clothes, my arms and legs, slowing me down. At one point, I froze when I heard the ATV stop at the top of the hill, and people talking. I was completely hidden in the seemingly impenetrable greenbrier thicket.

They moved on, and I eventually emerged, scratched all to heck, but the deer trail had saved me. I met my husband at the car and we took off, and passed on Tennessee entirely!

There is always a Path for us to follow, although at times it’s hard to see. For those of you struggling, who can’t see a way forward, listen to your Heart, and try looking for your Path from another angle. The way may be found in an unexpected place… and you might have to crawl through some briars first. But you will find your way again!

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“How do you do it?” she asked. “Just how do you manage to keep it together in spite of how miserably sick you often are? It is just so hard to keep doing this, you know?”

It is a question I get asked often, and there are a number of answers.

First, a rundown of what we’re dealing with.
The common perception of someone with one of the Neuro-Immune Diseases (NID) of Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), chronic Lyme disease or other tick-borne disease (TBD), is that it can’t really be as bad as we say it is, we’re lazy, or, we’re making it all up. Or, that we’re just depressed and “need to get out more.”

Nothing could be further from the truth.

Every victim of these very real, physically devastating illnesses I know actually is quite skilled in hiding their true level of discomfort and pain from their family and friends, struggling to hold on to some semblance of normalcy in their life until it simply becomes physically impossible.

Patients with mild ME/CFS, NID, etc, can sometimes work part-time, look after their families, and have a social life.

But for severely ill patients, that is not the case. Not at all. They ever so slowly get worse, and enter the phase we call “the living death.”

A really brief “refresher course” for those not familiar with our illnesses:

  • Many cannot leave their house except for medical appointments.
  • Most spend almost all day “vertically challenged” – either in bed, on the couch, or in a recliner, too utterly exhausted to move. There have been times I’m so exhausted, I’m acutely aware of the effort it takes just to breathe.
  • Most can’t cook for themselves, and some need assistance just to go to the bathroom.
  • Pain is usually a constant, even with the best of doctors – something many are lacking.
  • Many are severely sensitive to sound & light. They may eventually wind up living (if you can call it that) from their darkened bedroom, the shades drawn, speaking and being spoken to softly.
  • Cognitive problems get worse, and short term memory problems make things very difficult. Concentration, comprehension, “word-finding,” and spelling all become issues, and the more tired you are, the more pronounced the cognitive problems.
  • Me & Cherokee, about 1988


    “The Before Times”

    Virtually every patient I know was very active in “The Before Times, ” – what we call the years before these horrible illnesses blindsided us.

    Many of us were “outdoorsy” types – campers, hikers, runners, gardeners, and a disproportionate number of us were horseback riders (perhaps – or perhaps not – because a strain of Bartonella has been found to infect horseflies and be transmissible to humans).

    We were not lazy folks, generally speaking, and we’d all love to be strong and healthy enough to take up our previous pastimes. What I wouldn’t give to be able to ride again!

    But you know, we’d really all just be happy if we could function well enough to take care of ourselves, and not be a burden on the family or friends we’ve come to rely on for everyday care.

    I’m intensely grateful for the loving care my youngest daughter, Rhiannon, gives me every day, and her partner, Ben’s care, too, as well as the support I receive from the rest of my family.

    Some of us don’t have anyone, and suffer alone, in a sheer struggle for survival. My heart goes out to them, and if you are one, I urge you to get active online in some of the forums and facebook groups, and build yourself a virtual support network.

    Grieving My Losses

    I think an important first step in dealing with these illnesses is recognizing all that they have taken from you, and grieving your losses. And then, grieving for them again, because I don’t think we ever really finish the grieving process – it’s a spiral, not a circle.

    All those things I love to do, but can’t anymore – the horseback riding, the gardening, etc – periodically come up to be acknowledged again, and I try to remember that I led a life full of unique and rare experiences before I became ill, and to be grateful for what I had, rather than regret what is lost.

    However, there are always new things to grieve, as I get sicker.

    Many of us have been avid readers, but the ability to lose ourselves in a good novel is often one of the first things to go. When you can’t remember what you read the day before, or keep track of charechters, it becomes impossible… and yet another thing lost to these illnesses.

    Recently, my migraines and light and sound sensitivity have gotten so severe that I’ve lost the ability to watch TV, even with the brightness, contrast and sound down. I’d love to go to a movie, but haven’t in a long time, and doubt I could handle one.

    So, I acknowledge the losses, but I then let them go, and embrace what I can still do.

    Blogging

    Blogging has turned out to be far, far more than I thought it would. I started blogging just to keep my family updated on what crazy health stuff was going on, but then I found my voice… and I was found by fellow patients, some of whom have become dear friends.

    Many others have emailed or messaged me telling me how a blog post has really touched them, sometimes bringing them to tears (usually the good kind), often expressing that if they’d had the ability, they could have written exactly what I had. Sometimes people have questions, and I do my best to answer them.

    Slowly, the realization has come to me that maybe this blog was the point all along, maybe it’s my “work” here on Mother Earth. I always wanted to write, but never had the time. Now, I do, and plenty of subject matter.

    There are a lot of really sick people out there, suffering from these very misunderstood illnesses, and a lot of very odd “coincidences” and connections have been made to bring some of them into my life.

    I’ve seen that my writing is making a difference, which is huge. I may spend 90% of my day in bed, but I’m still having an impact in the world, and for that, I am so very grateful.

    Nature

    Mother Nature is strong medicine, and while I used to enjoy Her during epic horsetrekking trips or camping, now my options are more limited.

    But, that doesn’t mean they aren’t there! I’m blessed to live in the mountains I’ve loved since I was a child, with amazing views right from my bed. A screened in porch with a hammock-chair is well used, many times a day for very short periods of time (that whole “vertically challenged” thing).

    From there, I can watch gorgeous sunsets, the deer amble through the “yard,” fawns in tow, observe the nesting birds, flight of the hawks, occasionally spy the fox, and watch as the seasons change. A few steps away is the container garden on our deck, with fragrant herbs and flowers.

    Friday, I watched the Blue Moon rise above The Mountain, alone in the moonlit forest, and it was wonderful, if only for a little while.

    Beauty, natural beauty, is integral to my staying sane.

    Facebook

    I have many friends on Facebook, but most importantly, a strong, loving and supportive Circle of Sisters, most of whom are also ill. We catch each other when we stumble, cheer each other on, and commiserate over the pain. It is somewhat ironic that after being pretty much a loner all my life, with few friends, I now have more friends who I deeply love than ever before.

    I am gratefulfor each and every one, and all the Love they bring into my heart and my life.

    Creativity

    It may take me a month to do something a healthy person could do in a couple hours, but it doesn’t matter. What matters is that I work at it (usually “it” is crafting a bead from fossil ivory) as I’m able, 10 minutes here and there, and when I’m done, I’ve created something beautiful.

    Gratitude

    (Bet ya saw this one coming.)
    Maintaining an attitude of gratefulness for all that I do have – a loving family; wonderful, supportive friends; a home I love in the mountains I adore; good medical care; access to the internet with all its fascinations and distractions, etc – helps tremendously. When things get rough – and they’ve been very rough lately – I try to remind myself of all the good things I have.

    Sometimes…

    …none of that is enough. Sometimes, I wilt under relentless migraines that go on for weeks at a time, or get so frustrated at my inability to accomplish even small goals that I just want to scream.

    I’m not the perfect pillar of strength that some people seem to think I am. And like most of my more seriously ill friends, I’ve watched as I’ve become more and more of a burden on the people who love me.

    Those are the days I either contact one of my spirit sisters for support, vent to my mom, relentlessly sand a bead to distract my aching brain, whine a lot, reach for a klonopin…

    …or, all of the above.

    Getting By

    As one friend and I say, those are the days we get by, one breath… one moment… one hour…at a time.

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