You remember yesterday/last night/actually early this morning, when I was musing about how I want to leave a mark in the world, to do something important and worthy with my life? The gist was that I couldn't really fully put into words what I was longing for, but I've found it! I found the words to explain my mission! Whenever I read the Hands Free Mama blog, it's perfect timing for something, either a struggle I'm going through or a thought or philosophy taking shape that needed a little guidance and a shove in the final direction. This time, I came across this article called Your Most Important Role, In Case Someone Forgets, and I'll go ahead and copy the sections that jumped out at me the loudest.

I ended up taking that two-hour drive with Scott. I can’t even remember if he got the job; I only remember the look of gratitude on his face when he dropped me off, saying he would have been way more nervous if he’d gone alone. All I’d done was simply remind him of what he already knew—the good stuff we tend to forget about ourselves in times of doubt, stress, uncertainty, and fear.

Over the past two decades, I’ve referred to that experience many times: As a special education teacher looking into the eyes of a young man who killed his pet … as a mother whose Noticer of Life child admitted she felt “different” from the rest … as a confidant whose friend confessed dark truths she thought made her unworthy of happiness and true love.

“You might not be able to see it right now, but you hold great value,” I’d said to all of these precious people. “I see your value. And I am here to remind you when you forget.”

I have a dear friend who has written a literary masterpiece coming out in April that “illuminates one highly dysfunctional family’s tentative, desperate crawl toward a life of meaning and worth.” My friend says it happened largely because I believed in her. What Katrina doesn’t understand is that I had no choice. Her gift was so obvious and so needed in this hurting world I simply could not let her give up.

While working on the manuscript for my third book a few weeks ago, I needed grammar assistance. I knew exactly who to go to for help.

“Thank you, literary genius,” I texted Katrina after she provided exactly what I needed.

“You’re welcome, soul changer,” she wrote back.

I began to cry.

Out of all the things I could be in this world, I couldn’t think of anything better than that.

Soul changer

I never had to ask my friend what she meant by the term.

I knew exactly what it meant because of the experiences I had with my husband, my former student, and my child.

It means seeing someone’s inner light when he cannot see it for himself. It means putting your hands protectively around her light through upheavals and uncertainties so the precious light doesn’t diminish. It means reminding people of the beautiful things they know, but tend to forget, about themselves.

And I don’t do it for others due to noble reasons; I do it because it is what I hope someone will do for me. And because certain people in my life have done it for me.

One night Avery was playing her guitar and singing her heart out. Suddenly, I remembered an uplifting video I wanted to show her. As a self-professed “fan of adorable old people,” I knew Avery would enjoy seeing this video showing the impact of familiar songs on despondent seniors in a retirement home. The video was so touching and so personal, the newscaster lost his composure at the end of the segment.

After seeing the way the guitar-playing music therapist brought foot taping and hand clapping to the nearly lifeless seniors who began to sing along, Avery jumped up with excitement. “Music therapist? I never knew there was such a thing! I could do that, Mama! I want to do that!”

“There is very strong connection between music and memories,” I repeated from the news clip. “Just imagine. You could transport elderly people back to a beautiful time in their lives. You could help them remember their best memories and remind them of who they are.”

Soul changer

It suddenly occurred to me that we all have instruments in which we can change people’s souls. Some instruments are more obvious than others, but we all have them. Sadly, some people may never even know they’ve changed someone’s soul.

Soul changers

Thank goodness, they are all around us. Thank goodness, they are within us.

My friends, what an important role each of you play in this often-hurting world. You have the power and the instrument to help someone remember these critical truths: You are worthy. You hold value. You are not alone. 

Perhaps you do it with strong hugs or comfort food delivered right to their doors.
Perhaps you do it with a make-up brush and healing hands.
Perhaps you do it with long drives, quiet presence, or faithful prayers.
Maybe it is your green thumb or the tender way you wipe tears.
Maybe it’s the way you remember people’s names and say them with love.
Maybe it’s the way you bring humor to heavy situations or drop everything when needed.
Maybe it’s the way you always know when to pick up the phone or send a hand-written card.

Soul changers

Sometimes all we need to believe in ourselves is one person to remind us of what we already know.

And like a familiar tune from long ago, just a few notes is all we need to start tapping our toes and singing the lyrics we never forgot. And low and behold, we find it’s just the anthem we need to carry on.

That, my dear friends, is what I want to be. That is the essence of what I found myself longing for after hearing Rachel Scott's story, after watching The Mission for the first time and every time after when I listened to the soundtrack with my eyes closed. That's the quintessential Mark Maker that I want to be, the one people remember as the changer and caretaker of souls. Even just one.

I know that I truly loved my work with The Healing Journey, even though it brought up a lot of difficult things for me in the dark of night, and I know that I would have thrown my whole self into my massage therapy, had I been able to complete the training. I continually gravitate toward these professions of healing and helping, because that's who I am. That's what I wanna be. Now that my body is in a state of constant rebellion I can't accomplish the goals I once had for myself, but the delicious thing is that I can be a soul changer and a caretaker of hearts even from the depths of my own pain and from the cushions of my couch. It doesn't seem like such an unattainable goal after all, framed in this kind of concept. The very very best part? I know that I've already met this goal many times over, but each time will be beautiful all over again. Also, when you invest in the people around you, they tend to turn around and take care of you right back, which I've experienced much of. Now that I'm more dependent than ever, I have a lot of good people who have my back. Give and receive, ebb and flow.

Suddenly the next 28 years don't seem so much of a burden anymore.

I've spent the last hour or so putting together (and editing the track info on every track for accuracy) a playlist for travel. I dislike radio stations because you have no control over what they play--and all three of the stations in Yuma suck--and they inevitably cut out into annoying static somewhere throughout the journey. When traveling with Corey, he always has his phone or usb with tons of good music, but he is rarely my driver because of work. My plan is to burn several cd's, however many it takes to fit this playlist on, and keep them in my little GPS bag so that I will have them whenever I am traveling, because I always take my GPS with me on out of town trips, even if it's the same destination that I've been to every month for the past year. Just in case. Detours, and all that. Plus it finds restaurants and other stuff! Best Christmas present ever. Seriously. It's been so practical and useful! And I don't have to finagle trying to borrow my grandparent's GPS any longer.

Putting together the playlist has me listening to songs that I haven't listened to in the better part of a year, thanks to my discovery of Pandora and Youtube playlists. I haven't relied on my iTunes library in quite some time, but it was nice to discover favorite songs again. The interesting thing is that I started going through my old Christian Rock/Praise collection again, and I felt things… it was just very interesting.

Listening to my old Alternative Christian Rock brought back all the warm fuzzies from my time in Idaho, which is when I began listening to it and collecting various tracks and artists. It's kinda weird to feel the rushing tingle of whatever it is I'm feeling, but I just feel wrapped up in a warm hug, almost, when I hear certain songs. I think a lot of the powerful effect they have on me is that they are heavily associated with a lot of the work I was doing to confront my abuse and to break free of my crippling depression, so I feel that same jolt of self-affirmation and power that comes with really trying to better myself and my circumstances. That whole time period of 2 or 3 years, however long it was… it was difficult beyond all reason at times (a lot of times), but I also made more breakthroughs and developed myself personally more than I ever had before in my life. I really think it was the time I spent in Idaho and the summer in LA that gave me the backbone and strength I needed to face life with multiple degenerative chronic illnesses. I learned my own strength and intelligence, my charisma and ability to love and be loved. It was necessary preparation for not just the next phase of my life, which included college and my work with The Healing Journey and getting married, but for the rest of my life. My time at Bible college, SOULS West, was more of a test of my stubborn resilience, and without SOULS I never would have gone to Idaho like I did. I got a job offer from the Conference up there as a Bible worker (which I thoroughly hated, as much as I hated canvassing, but I can't deny the skills I honed through both of those occupations), and thus I was connected to the Adventist community where I lived in a way that I could not and would not have achieved any other way.

While I no longer hold to the beliefs that I struggled to adhere to in those days, I still get that rush of pleasant feelings when I hear the music of those days. When I first felt it, I questioned a little whether it was perhaps dormant beliefs rearing their heads? But no. When I listened to the lyrics, though, I thought that, yeah, it must be nice to believe in your ultimate importance in the grand scheme of things, to believe that there is more to life than meets the eye… and I believe that there is, but not in the Christian scope of things. Not anymore. Maybe if I hadn't gotten bold enough to start examining the questions and thoughts that I'd always buried before, lost in the flurry of religious activity and constant motion, then I'd still be a member of the church in some way or another, even though I probably wouldn't make it to church super often these days. I admit to missing the camaraderie of a unified culture, the instant connection with other Adventists due to common belief. How could I not? It gets lonely here, with only cats for company. Yet I don't have the energy or will-power to overcome the pain and seek out other company, so maybe it's for the best. Talking to people is really exhausting.

I saw the geneticist at the end of last month, and my rheumatologist earlier this week. At the advice of the geneticist, I quit taking Vitamin C supplements because I didn't see any difference or help from them. She said to note carefully if I did feel any different upon quitting, and to start up again if I noticed a benefit to me. Well… they were doing more than I realized. A few days to a week after leaving off the C, my pain levels skyrocketed to what they had been back in the bad old days, before I had found proper help for my pain. Even with the strong medication I'd been given, I have been in agony for the past week. It's been awful, so awful. It's not just pain, it's a painful burning within the bones and concentrated in the joints, like they are filled with napalm and brimming over into my muscles… I've had to use my walker to creep around the house this whole week. Thankfully, my fatigue has increased with the pain so that I am sleeping just as much as before, if not more, which means that I am insensible to the pain consciously, though I definitely still feel it. I know, because sometimes I wake myself up with moans that sound remarkably like the lowing of a cow. Go figure. Having figured out that it was most likely the lack of extra Vitamin C that caused this dramatic change (because nothing else is different), I began supplementing again about two days ago. I'm noticing some little bit of change for the better; not much, but any relief is something to shout from the rooftops about. Yes, it was that bad. I have no idea how I managed to visit the rheumatologist all the way across the state in such a state. I am certain that I will continue to improve, though I can't say at what rate, and I feel that this experience may have knocked me down a step or two permanently. Alas. It was an important revelation, however. What about Vit. C prevents the burning in my bones and joints, the pain that pervades every single nerve fiber in a flaming gout of misery? I don't know, but I do know that I will never allow myself to run short, ever. This extra amount of pain is the reason for my increased presence on my blog, however. It's been that and reading-- distraction of the mind. Anything to not focus entirely on my agony.

Speaking of the rheum, it was a fairly productive appointment. I informed him of my ever increasing back pain, the pain due to the injury I gave myself during my last bout of narcoleptic-like sleep attacks. I fell asleep while standing at my dresser, taking my meds, and then I fell backwards completely prone and hit my head on the metal frame of the bed. There was nothing I could do to stop myself when I woke up halfway through the fall. I hurt my head, of course, but I also jammed my back somehow when I landed on the hard floor like a piece of bread butter-side-down. When I went to my chiropractor, he said that I had 3 or 4 vertebrae all jammed in together. I've seen him a few times since then, and had several massages, hoping to heal it like I did the subluxated ribs that I got in the hospital about a year ago. It's even the same place that hurts. :( This time it's the spine, primarily, though the ribs are also affected. Mer. Anyway, Dr. S ordered an X-ray, which we both agreed would be the best thing. He could have gone with an MRI, but I asked him to go the cheap route.

As an aside, I worked the numbers recently, just in my head, and I realized that I need a minimum of $400 a month to cover my very basic medical bills and prescriptions and travel costs. That is pretty discouraging to me, especially as I was denied disability again and the only way I can pay that is to beg my dads for money. I hate doing that… which is why I have this low-grade feeling of desperation bubbling through my core at all times, though it increases to a high boil whenever I have to pay any bills outside of that.

Anyway… I shared with Dr. S that I had been denied disability again, and he was incredulous. I told him what the letters said, and he responded with a slightly indignant, "But you have EDS, and you have it bad. I mean, you really have it bad!" That was both slightly discouraging and affirming. I keep hoping for a spontaneous recovery, but my better sense tells me that this won't be the case, especially as my diagnosis list on my rheumatology paperwork still lists Dysautonomia and Inflammatory Polyarthritis as confirmed diagnoses, in addition to all of the endocrine diseases and other fun stuff. I really am amazed at how stubborn I was in previous years, insisting on finishing Bible college despite severe illness of a then-unknown nature… and college classes… and work at the Healing Journey… I really did a lot before my body caved in and became more helpless than before. When I think about all I accomplished (especially all of the backpacking and camping and other achievements from my time in Idaho), I am very proud of myself. I really am a tough chick!

Dr. S ordered several blood tests in addition to the back X-ray which I was able to knock out that day before I went home, but I have to go in for an ultrasound of the hands when I'm in Tucson next. My next visit will include the ultrasounds, a visit to Dr. L, my geneticist, and Dr. R, my cardiologist. Oh hey, did I mention that I've started Physical Therapy? Yes, I have a therapist coming to my home to get me started on a home exercise program. I had to cancel the last appointment, because I was in the throes of my increased pain and fatigue, plus the previous appointment had come right at the threshold of my slipping into old pain-types, and we had definitely over-done it. I am finally recuperated from that visit, but it's been almost a week. She has only 3 more visits she's allowed to make (stupid insurance), but I'm doing pretty well on my own. She just wants to show me what I can progress to, in time, but we are starting very slow and small for now. It does feel good to be working my muscles again, beyond my daily evening walk. Takes me back to my Acrosports days, in a way. I know that by a lot of people's standards these exercises would hardly be "pushing it", but for me and where my body is right now, it is definitely pushing it. It's a good opportunity for me to continue learning how to determine my limits and quit when I need to… despite my urge to keep going. Modified crunches have nothing to do with my worth, but it's hard to believe that thought sometimes, especially when I remember what I used to accomplish. I've fallen pretty far… It's not my fault, though. These are just the consequences of my faulty genes, and I'm making the best of it.

Really, considering how physically miserable I am most of the time, life is actually pretty good. My marriage is doing fine. In fact, things feel better lately than they have for a long time. In another post, I'll talk about the Masquerade Party that we went to, and all the fun stuff connected to it. It's time I ate a little something, took my meds, and surrendered to sleep yet again. Good night, all. (Or morning, if that's where  you're at.)

So guess what, folks? The Princess (that's me!) went on vacation. An honest to goodness, get away from it all vacation. I really, really did! It would in no way have been possible without my amazing sister in law, who I did not know cared for me as deeply as she does, but she spoiled me in almost every fashion imaginable.

First off, she had started saving for this weeks and weeks ago, and while I was there I paid my own way on things twice. Twice. In an entire week of going places and seeing things and doing stuff and buying food! Second, she was very careful to keep my physical labor to a minimum, to make sure that I rested as much as possible, and that I was able to access the places we visited. She carried all of my luggage and would only let me carry pillows and the like, even loading and unloading my walker every time we got in or out of the car! I must admit, it was pretty fantastic to have a sherpa, as I jokingly called her throughout our time together.

It was a bit of a whirlwind trip, but it was so incredibly nice to have no responsibilities, to not have to pay for anything, to have fun things to look forward to every day yet not have any kind of a rigid schedule so that our whims and my health could lead the way as to our activities, and to just kind of… well, I have this mental image of, like, my normal life and home and such with this blank white cutout space in my shape throughout the entire week where I would normally be during that time, and the cutout of me was pasted into this whole other life and reality for a week. Does that even make sense? It was so different from how my life usually proceeds that it felt like almost an entirely different reality, which is what vacation is supposed to be, right?

It felt restorative, rejuvenating, and soothing. I was the closest that I've been to my pre-Spoonie self than I've been in years. Granted, it took a lot of assistance to get that, but that doesn't diminish the experience at all. It's a series of memories that I will cherish for a long time to come, I can guarantee that.

Our week went something like this…

Sunday: Colleen (sister in law) arrives and we more or less intend to leave that day, but don't because I'm feeling poorly and it takes me forever to pack, and also what's the rush? We make a list and Colleen packs for me, which is awesome.

Monday: We leave in the morning after stopping by the local muffin store (Yum-azing!), I sleep all the way to Tucson. We go grocery shopping, Colleen cooks supper, take a walk around University, get locked out of house upon return and Colleen ends up breaking in through a window that was unlocked.

Tuesday: Visit an art store for shopping, go clothes shopping for me at a thrift store nearby, have dinner with Colleen's best friends and I have my first margarita. The night is capped with my first hookah smoke and we talk late into the night.

Wednesday: Walk the main drag near the University and visit the tea house we've had our eye on, go to dinner at a fancy place and run low on time, get trapped in the parking garage because of a faulty ticket and barely make the play we've been looking forward to seeing (and pre-purchased tickets for). End the night by returning to the main drag and hanging out at a coffee shop smoking hookah and eating Mediterranean pastries until the shop closes late.

Thursday: Drive to town an hour or so away to spend a few days with my friend Rose. She was interning with the Victim Rights department during the trial that put my molester in prison, and so she was sort of a victim advocate for me and we've kept in touch and maintained a friendship since. Get settled, I get a haircut and Rose takes me on a mini tour of the Army Fort and beautiful surrounding scenery. I fall asleep in the car and nap upon our return, wake to find company over for dinner, and we all hang out until dispersing for bed some time after company leaves.

Friday: Take a 2 mile walk with Rose (yeah, that's right! I'm fuckin' proud of myself!!!), nap briefly before we all pile in and drive to Bisbee to check out the stores and sights. Colleen buys her first "real" piece of art and is now an official adult, and I find some amazing souvenirs and a smaller cast iron skillet of a size we don't already own that I take home for Corey. (He likes it a lot, and used it for the first time tonight to make a sort of omelette.) After coming home, Rose's "Gathering Of The Awesome" party starts a while later, consisting of awesome women that she knows and invited to an evening of yummy light food, good drinks, good conversation and company, and a fun art activity that was also insightful and connecting.

Saturday: Leave Rose's and head back to Colleen's house, go grocery shopping for afternoon picnic planned. I nap for a few hours, then she, I, and one of her best friends that we went to dinner with go up Mount Lemmon and have a picnic, sort of start a fire to keep ourselves warm, and watch the sunset on the drive back down the mountain.

Sunday: We both sleep in, and eventually she packs up the car and takes me back to Yuma but leaves shortly after because of work the next day.

I was feeling pretty good throughout the week, at least as far as "good" for me goes, but as the week went on I could feel myself wearing out. By Friday night I was running a mildly low grade fever and felt pretty gross. Saturday night I declined a proposed meet up with a friend of Colleen's in favor of staying in bed because I felt shitty, and Monday, the day after I got back, I pretty much did nothing but sleep in hour-to-several-hour increments for about 24 hours. I'm still recovering, but part of it is that I don't have that medication that helps so much with the stiffness and pain in my joints anymore, so I just feel more arthritic and whatever than usual anyway. Also, period should be coming soon, and I'm always exhausted the week before my period and sleep more than usual, so I'm not surprised there, either.

I cheated a lot with allergens on vacation, so I'm returning to being a "good girl"… but oh man, I had some of the best food in a long time. Have you ever had fresh sopapillas? Then you are missing out on the culinary equivalent of salvation for your soul, I swear to you. They are so. good. I've also been on a huge muffin craving kick since we hit that muffin place on the way out of town. I had forgotten what I was missing, but now I am constantly reminded of my suffering due to lack. Alas, alack, woe is me, woe betide, and all that sorrowful jazz…

It was a good trip. It was a very good trip. I don't expect to have an experience like that again anytime soon, but I will surely treasure it. I feel different somehow from having  had the experience, but I'll think on that more later. I am so indebted to my ladies, Rose and Colleen. My gratitude knows no bounds. I know that they really went above and beyond for me… and yet for them, I'm sure it seems somewhat of a simple matter. It's funny how perspective works. From my perspective, it was a chance to live life again, to have fun and forget the frustrations and complexities of trying to juggle doctor's appointments and bills and finding rides and medication snafus and all that… to simply be a young woman again and enjoy things… to just have fun, pure and simple! From their perspective, it was doing things that maybe they don't get to do every day but have been wanting to, but it wasn't particularly mind-altering I don't think. It was pretty much business as normal, but on vacation time.

Regardless of who felt what, there is one thing that we should all be feeling right now, and that's pride. Pride in me, of course. Why? Because it's only been 3 days since I got home, and I'm fully unpacked! Yeah, baby! (This is fairly unheard of, just for context.) Now that I'm home, back to responsibilities, I feel a little better equipped to handle them now that I'm not so frazzled and frayed because I had a pleasant break. On the other hand, it makes me not want to deal with real life at all anymore and just continually live the vacation life on someone else's dime… Heh. If only, right?

**Author's note: One of the new/aggravated symptoms I'm dealing with is, for lack of a better term, short term memory loss. I believe I can attribute this to the pain medication I'm on, but it does make for some interesting experiences. This post, for example, was written while I was literally falling asleep at the keyboard. It was totally coherent and even eloquent to me at the time, because I knew what I was trying to convey. The next day, when I realized that I had written a post (because I'd forgotten that I had, actually!) I came over to read it because, naturally, I couldn't remember what I'd written. I found it to be… not quite as lucid as I had thought it was. Apologies. If you can muddle through this and make sense of it, I just may hire you to be my FibroFog Interpreter. I didn't want to delete this, though, because I mean… it's my writing. A piece of myself, coherent or not. So, here it shall remain, if only as a testament to "this is your brain on drugs".**

I'm given to understand that there are many "steps" when it comes to acceptance and grieving of a chronic illness. It may not immediately seem clear as to why someone would need to "grieve" when they're clearly still alive. I mean, grieving is for when people die or you break up or something, when a relationship is lost… right? Right. However, unless you've encountered it yourself, seen it in the life of someone you know (to whatever degree of closeness), or have just thought about it quite intently, it's unlikely that anyone would understand the phenomenal amount of loss involved with a chronic illness diagnosis and the life after the diagnosis. I spoke of death just now; in a very real sense, a diagnosis of a chronic illness is both the death knell for the "old life" and the harsh squall of the newborn as a "new life" unfolds before the patient. Due to the completely unpredictable and generally misunderstood nature of chronic illnesses, though, many times that life unfolds only minutes at a time. There are no grand, sweeping vista of plans and ambitions or sweet, sleepy forests of peaceful routine followed decade by decade.

The landscape of the chronically ill and the average healthy citizen can appear deceptively similar to the casual observer. Often, the land of the ill is surveyed with a passing glance and dismissed with a nonchalant, "you don't look sick!" After all, the sun still speckles brightly along warm earth paths of smiles and laughter, mountains of various sizes and relative distances are scattered through the view, and always, always, the loud gushing streams of cool forward momentum and purpose weave and twist their way in and out of both expected and unanticipated settings. Look closer, though, and you will see troubling changes that stir up an unease within, changes that make you want to run for your life lest you be contaminated as well and your own precious world poisoned.

The straight furrows of garden plots are worn and cracked, dry with fatigue yet managing to bring forth a feeble crop. The cheerful cottages, clearly once a source of pride and sustained labor, now seem to troop sadly across verdant meadows bare of livestock. Lush banks of flowers cover crumbling masonry and low, stooped walls, draping the entire panorama in a rippling, delicate gown of every hue imaginable. The colors are a riot, but blend together to create the most intricate and exquisite of tapestries; every bloom is perfectly placed, from the single frothy Queen Anne's Lace to the tightly bunched carpet of creeping phlox, and what could have been hills barren and uneven becomes a spectacular faceted gem of pure joy.

The chronic illness world can be a harsh, ugly place. The cottages and relationships that we have so carefully labored over and constructed with our own hands through years and years of work, they often fall into some state of disrepair. Those who live in the cottages can do some of the upkeep themselves, but the true purpose of the cottages demands a synchronistic cooperation in order to truly thrive. Beyond the cottages, the near-empty fields mutely allude to the loss of hobby and gainful employment. The sweet silence of the air brings a sharp contrast to the usual sounds of looms clacking, animal noises, children squealing and squabbling; the normal sounds of a busy life have been replaced with a hollow, pealing silence that resonates down to the very bones.

The flowers though; ah, the flowers. The flowers make it all bearable, if not tolerable. The origin is unknown except to the owner of the valley, but such a rich and varied selection is found but rarely outside the landscape belonging to the chronically ill. It seems that the soil of normal lives just does not cultivate the proper atmosphere or soil in order for the plants to grow to their fullest and most luxurious. Well-groomed flower gardens can be seen among the graceful landscaping of nature itself where people have taken to cultivating particular joys and gratitudes, while others appear to be content to take theirs wild and unsolicited.

In my mind's eye, my landscape looks much like north central Idaho, or perhaps western Montana. It is rugged and choppy, coated with mountains and sheer cliffs and whitewater rivers dashing themselves ever downward. It is sparsely populated, and those that are there tend to keep to themselves and be self-sufficient-- no coddling these cottages. Practicality reigns supreme, yet nature itself inspires a veneer of beauty to soften the edges and uplift the heart. Those same rugged mountains are swathed in dark evergreen forest, underlaid with countless varieties of bush and berry and other barks. The seasons change, time inexorably marches on, and even the death that time inevitably brings wears naught but a thin, shimmering mantle, spinning and flaring in the sudden colors of Fall before the cloak is thrown aside and the naked white bones of the world come to the fore of collective consciousness.

The landscape of my illness is part beauty, part blight. Pockmarked scabs of raw gashes in the earth can be found mere steps from a tranquil, dainty pond embroidered with ferns and sweet puffing breezes. I can always find flowers to sustain me, even if it's just one, but the wanton loss, destruction, and waste that I see around me as my world crumbles… it sears my soul with a thousand putrid colors that I dare not do anything with but swallow. Every day is another Pandora's box: the lid is cracked open by morning light, the evils escape and howl through the welkin to begin their outrage anew, and Pandora slams the lid shut tight, having only hope left to herself.

The thoughts and feelings of such a continuous cycle of dismay and disappointment take a heavy toll, and the words do not come easy. They boil and roll around inside of my head and my heart, percolating all the way down to my fingertips… but at the last minute my heavy heart shakes her head and says it's too much, too much, and we're all (all of us pieces parts together) too tired to argue so we cover our eyes and turn slightly to the left, hoping that the results will scatter in the sweetly sweeping breeze. They never do, and I grow heavier and heavier as I wait for the words to finally squeeze themselves from my very pores and splash across the page. I wait for the words to write themselves, to unwrap the weighted intensity of themselves and float out into the world, because I don't understand them while they are inside of me, not really, and if I can read what they have to say about themselves then I just might be able to make some sense out of all of this. My landscape is beautiful, in its own way, but it is also terribly confusing and wickedly deceptive, and I am afraid that someday I may drown in my own confidence.

Okay, I admit that my last post about Drogo was written out of my own irritation, and I'm glad that I have this safe place to vent and not go pouring my wrath upon him whenever I have fleeting feelings.

What I do have right now, though is kittens "helping" me to blog.

They are climbing on my hands and the keyboard and popping up between my arm and my side. It's pretty adorable.

Anyway, back to my admittance… I think Drogo just needed some time to, you know, be all grouchy and moody and whatever, and now he's getting over it. I pretty much decided that I was just gonna hold off and not really interact with him beyond passing conversation (i.e. not seek him out and "try to make things better") because I realized that women need a closeness when things are going wrong. We want to connect, to draw together, to be reassured and to talk and know that it's all gonna be okay etc. Men aren't like that. They want to be apart, to do productive things that will assure the desired outcome (that the thing going wrong won't be going wrong anymore) will come to pass. My continual pressing on him to make me feel better and to try to make him feel better and see if there was anything I could do to make things better and make the situation better was really just making things worse. So… I decided I was going to do for him what he needed. Space. Time. Silence. Okay.

I had to check my motives, though, and make sure that I wasn't ignoring him to punish him for being irritating, but to make sure that I was holding back from him to give him space to finish being grumpy on his own terms and in his own way. Waiting, you could say. Not punishing. And I did. And it felt kinda weird, but I knew I was doing the right thing. He came in after work and laid down with me for a bit, and I enjoyed that. He asked what I did, and I filled him in on the day. We discussed some "to do" things that I needed to accomplish that are urgent and I assured him that I would the next day (and I did!). He got up and went to go do his thing and I did my thing and eventually I went to sleep. While I was getting ready for sleep, though-- flossing, brushing my teeth, washing my face, etc.-- I came out and watched him play with the kittens for a while, which was adorable. We talked about them for a bit, too, and then I went to bed to sleep (versus going to bed to just lie down, which I do frequently). 

I woke up a few hours later 'cause pain and hunger and bladder, and as I stumbled into the kitchen I blearily noticed the sensation of my feet felt a bit different. I shuffled a bit further and realized-- Drogo had swept the floors! Granted, it's his chore and we'd both agreed it needed to be done that day, but he did it! Yay! I shuffled delightedly to the sink, only to be shocked into an utter standstill. The dishes were done. Normally I wash my dish right after I use it, but the past day or so had been especially bad for energy and muscle fatigue, so I'd let a few bowls and plates pile up and was dreading the thought of washing them all up. Now, though, I didn't have to, because the dishes were done!

And now I felt bad for being irritated with my husband at all ever. He wasn't far behind me in entering the kitchen, so I maneuvered my way back across the clean floor and kissed him passionately (do men know how sexy a clean kitchen is? Men everywhere--- this will get you into a woman's pants faster than roses and chocolates and fancy pick up lines! Okay, maybe not the chocolates, but it's really, really impressive!!) and thanked him profusely. I also thanked him again in the same manner the next day, and both times he was adorably bemused at my gratitude, but hopefully he'll store it away for future reference. He just said, "You were getting behind." Hah. Yes. Yes I was, and I'm grateful for the help.

So he's coming out of his grumpy shell bit by bit, but here's the bombshell… he broke his two cat rule. He has this big thing about only have two cats at a time. He claims it's to keep me from becoming a Crazy Cat Lady, and he's probably right, but I resent the Two Cat Rule with a passion, 'cause kitties! Anyway, we're re-homing the black cat that doesn't like people and keeping one of the kittens, right? Right. But the kitten will be oh-so-lonely without mama and its litter-mates because that's all it's ever known! So I proposed to Khal Drogo that we keep two kittens, especially since Juneaux is terrified of kittens and they'll need each other, at least until they're more significantly grown. He's been thinking about it, and today he mumbled that he guesses we can keep two kittens… and then he picked out the one that he likes the best. He broke his own rule! Ha-HA! 

Sorry. I just feel rather victorious at the moment. He didn't let me celebrate, though. I squeee'd once, very loudly, and he told me to "stop freaking out, woman". So I did. I replied "I will stop freaking out because I know that if I continue to do so it will jeopardize the decision you have made. Am I supposed to act like this is no big deal?"

"Yes."

"Cool. No big deal then. Can I smother you in kisses?"

"I'll be in there to kiss you in a minute. I'm leaving for work."

"Besides that one. Can I smother you in kisses?"

"…I'll be in there to kiss you in a minute. I'm leaving for work."

"…Alright, fine."

So I admit that I was writing out of my own annoyance yesterday, and he is being an adult and getting over himself, at his own pace, in his own way… and he's making overtures of kindness toward me, I think to make up for the grumpiness that he knows has hurt me this past week and more. I haven't discussed that here, but there have been incidents. It's been rough. Anyway… our marriage isn't in danger. We're just people, like anyone else, refusing to give up on each other. And isn't it super sweet that he swept the floors and did the dishes and is letting me keep kittens? My heart is so totally melted right now!!!! <3 p="">

That it is, that it is. But on the same token...

I haven't been around these parts much because, frankly, I just haven't had the energy to write much. This used to be a favored haven of mine, and now it's kind of a last resort, a place to turn to when I have excess steam to blow off and nothing more.

I'm sincerely hoping that this medicine my pan doc has me on will prove its mettle and do as she says it will, taking away some of my full body pain. It's a regimen that she says has helped many patients before, so… On the one hand, I'm really disappointed that it isn't working yet and I'm incredibly frustrated that I'm sicker than ever and in more pain more consistently than I've ever been in before, but on the other hand I have a perverse satisfaction that says, "Ha ha! I told you so! I told you I was sick and that I was super dubious about this treatment plan! Who's the man? I'm the man!" Definitely conflicting feelings there. And while every day brings its own special brand of misery (for instance, it is  very, very painful to breathe right now, both inhaling and exhaling, and my shoulders are on the upswing of a viciously aching bell curve), if I don't feel the absolute worst that I've ever felt I find it difficult to admit that I really do feel all that sick. I mean, I do feel poorly, yes, but I'm really not that sick, right? Because I'm not in so much pain that I'm vomiting. Or because I can still walk. Or because I can lift my arms above my head. Etc., etc. I'm telling you, being chronically ill and in pain brings some weird twists of thought and feeling to you after a while.

Other than just trying to hang on and make it through the days, it's just been… pretty pleasant, actually. I've been maintaining the cleanliness of the house pretty well. I'm proud of myself. I've learned that doing a dish right when I'm done with it takes far less energy than leaving it for later when I might feel better (because let's face it, I'm not going to feel better later), and it looks a lot better, too. I'm eating better too, I think. I still have zero energy or stamina for cooking, and not much appetite (I'm nauseous a fair amount of the time), but I've learned that sandwiches are a good way for me to get some veggies and protein into my diet, which I was severely lacking before. Also, I tend to have some sort of fresh fruit on the side with my sandwich, and that helps with variety of diet as well. I feel like I'm doing better with my diet this past week, even if I am sicker than I've been. It really helps that some friends have given me fresh kale, spinach, and swiss chard from their gardens and that's what I've been using in my sandwiches and stuff. I'm like, "I gotta use it before it goes bad!" Hah. Oh, and I finally cracked open an avocado for the first time in forever since David died, and I only cried a little.

I've realized there's some very good things in my life that help to balance out the bad things that are so easy to focus on. For one, there's my friends that have been showering me with random acts of kindness. The Artist took me out to tea the other day (well, it turned into lunch at Olive Garden actually, because the tea place was closed, but whatevs) and when she came to pick me up she brought me the sweetest little miniature white orchid plant. It's absolutely gorgeous! Funny thing, too, is that ever since I lived with this elderly couple in Visalia that had orchids all through their house I've wanted orchids of my own. It's been years and I've never been settled in one place long enough to realize that dream until now. Yay! A long distance friend of mine from SOULS that I call Pookie sent me a mug in the mail that reads, "The past, the present, and the future walked into a bar. It was tense." Hah! I got that today, and I already inaugurated it with a cup of silver needle white tea which was super delicious.

Another thing I realized the other day while talking to Rose was that, if I hadn't married Drogo… I don't know what kind of position I'd find myself in now. How would I support myself? Where would I live? How would I pay for my special food and for my medicines and my doctor's appointments? How would I take care of myself on a day to day basis? The timing of our marriage and my subsequent plunge into disability was fortuitous, as far as these things go. I'm a very lucky spoonie. In a similar vein, we are in a pretty good position to be handling this very challenging situation. We own our own home (and before 30 at that!), we have minimal debt, we are able to live off of one income comfortably even with the crazy doctor's bills (well… okay, we manage), we have good health insurance, and we don't have any dependents. Again, I'm a very lucky spoonie.

So while it could be better (healthy bodies, anyone?), it could also definitely be worse. Drogo and I don't have to choose between medicine and rent. I'm able to get the health care I need in the big city even though it's a stretch financially. Most importantly of all, I have a significant other who cares, who does his best to understand and support me, and a far-flung network of friends and family who do the same. I'm a very lucky spoonie.

Note: If you need a quick refresher on who's who, check out the post Appellations for the list of names and nicknames I've assigned everyone.

Here's the summary of my weekend that I posted in various forums and places on Facebook this weekend:

"My home has been invaded by long-distance cleaning fairies. They came over to see me and Drogo and to thoroughly clean our house and give me a massage. Basically? I cried at the incredible outpouring of love and care and consideration, and now I'm sitting here eating grapes, listening to Def Leppard, watching them clean and dance and be silly, and watch my husband assist/fetch cleaning supplies/be shooed out from underfoot. (I'm not allowed to help.) feeling overwhelmed by love with Lacey and 2 others.

So they just left… but three friends of mine conspired with my husband to show up and clean my house for me. They are from several hours away and were going to be coming to town for other reasons, so they were going to come and see us *anyway* to say hello, so they figured they'd just take care of me while they were at it  One of them, who I actually met for the first time yesterday, is a licensed massage therapist that has worked with fibro patients previously, and she gave me a foot massage yesterday and a back massage today. They did the dishes that I've been too sick to do for three weeks (yeah, ALL my dishes have been dirty for three weeks-- gross!), and I didn't realize how dirty my house had actually gotten until they cleaned it! One of them took nearly an hour to soak and nitty gritty scrub my bathtub so I could soak in super duper cleanliness, bless her heart.

I did what I could to express my thanks (beyond crying when I comprehended what they were here for when they showed up yesterday, of course!) so I made them little gift baskets last night and wrote them thank you cards with their names in hand-lettered calligraphy on the front and stamped wax seals on the envelope flaps. (Wish I'd thought to take pictures. Oh well.) They were so pleased! You'd have thought I'd given them the moon  The lesson I learned from both giving and receiving this weekend is that while it pays to give, it also pays to receive graciously and with humility and pure gratitude. It meant a LOT to those girls to be able to do something so obviously meaningful for me, even with no apparent reward anywhere in their future beyond my and Drogo's gratitude."

Yes, I cried when they revealed their intent. And I TOTALLY guessed who was mysteriously coming over! Drogo was having a prolonged text conversation and sporadic phone calls and wouldn't tell me who was coming over and I was like, "Is it Lacey?" (she lives hours away and we rarely get to see her) and he was like, "Why would it be Lacey?" Literally minutes later a knock sounds at the door and in walks Lacey. I knew it!!!!! And when they told me that they were there to clean the house and that the new friend was there to massage me, too… I just broke down. I still burst into tears when I look around and see the cleanliness of my house. My heart just cannot hold that much love! Dani, Lacey's girlfriend, scrubbed and soaked and scrubbed and scrubbed my bathtub and shower until it sparkles and gleams because she knows that I soak in it a lot. 

See, I had sent out a plea on Facebook the other day, giving up my pride and just asking for help from my friends because I can't do this anymore. My pain levels are too high and I'm too sick and I just can't make life work all by myself anymore and I need help! I had dishes in the sink that had been there going on three weeks, and I was too weak to wash them. I was/am too weak to cook myself food, so I'm relying on easy-make foods like sandwiches, cereal, fruit, yogurt, certain veggies, etc. For various reasons, people were unable to come to my rescue, but these ladies began plotting and subsequently Facebook stalking me to make sure that no one else stepped in to do the job they intended to do, which no one did. So they bought all manner of cleaning supplies and brought grungy shirts and braved the dust and the mold and the kitty dander to which they are all allergic, and my home is so lovely and bright and inhabitable now, it just brings a smile to my face when I hobble through :)

I wanted to "pay it forward" somehow, desperately, to give something back somehow, so I put together little gift packages for each one of them that night after they left. (We went out to dinner together, too, so that was fun. Fortunately, due to some extra pain killers headed my way via an anonymous source the day before, I had my best day this entire month, no exaggeration, and I was able to be up and about with them in a halfheartedly normal manner.) They opened their gifts and read their cards while they were visiting with me this afternoon before they left to go home and I couldn't believe their heartfelt appreciation over something so small. I mean, they had given me something so incredibly heartwarming and valuable… I felt as though my return gesture of appreciation was so feeble and faltering in comparison! But it was not so to them, and that is what matters.

The amazing thing is that just the gratitude that I had for the gift they gave me of their time and effort and taking care of something that I was not capable of doing on my own was enough for them. That was all they expected to receive, and it was more than enough for them. It meant so much to me, what they did, maybe more than they will ever understand. To go from being an active achiever, someone who "gets things done" to being unable to do your own dishes is… well, it's humiliating. You begin to question your own worth as a person, as a wife. What is the point of even keeping me around, you wonder. Why does my husband want me here? All I can do is sleep and generate mess. But these girls… they came in and gave me a fresh start. I can maintain the cleanliness, to a degree. When I use a dish, I clean it right away so it doesn't build up. They laughed with me and cracked jokes and told stories and, most of all, reaffirmed my worth as a person. They wanted to spend time with me. They came all this way for me. They wanted to do this for me, of their own free will. They went out of their way and went to trouble for me because I am of value. It cheered me up to an unspeakable degree. It's hard to explain.

As a side note, I also found a bit of usefulness as a chronic illness advocate as well. The massage therapist, Meli, has worked with fibro patients in the past but doesn't know much about the illness itself. Her mother deals with many chronic illnesses but is, as Meli describes it, a hypochondriac. She is the negative stereotype of chronic illness patients embodied, the type where they say "it's all in your head" and it's kinda mostly true. That's unfortunate, but that's kind of the place where she has had to base her knowledge and dealings from, because that's all she really knows of chronic illness. During her time with me, she asked me questions and I answered as best I could, and of course she saw me deal with everyday life in my fashion. In addition to that I mentioned something about spoons, which lead to my reading her The Spoon Theory by Christine Miserandino, which is like the American Constitution for chronic illness patients lol.

Well what is really neat is that today she told me that I have really changed her perspective on chronic illness, enlightened her, so to speak, and I feel much like how I used to when I worked with The Healing Journey and did advocacy for abuse survivors. This illness has taken so very much from me, and I suppose you could even say it has ruined my life. At this point, that could be a very accurate statement, though in the future that may no longer apply. (Fingers crossed!) However, as with the negative things that stem from abuse, I've managed to turn those potential life-ruiners into positives by using them to inform and educate others and advocate for rights, change, research, healing; whatever is necessary at that time. I'm a badass, man. Life can't keep me down, no matter how hard it tries! I'm just super grateful that I have helped Meli to understand fibromyalgia and chronic illnesses better, because as a massage therapist and a health practitioner, she has the potential to affect many lives in the future. By affecting her point of view, I have theoretically changed dozens, if not more, of lives of people that I will probably never meet. Crazy, right? All by simply being my awesome self and being honest yet upbeat about my struggles and health problems.

Things are looking up. I may not necessarily be on the mend (if this month is any indication, because it has been hell), but I can still be a positive force in the world even from within my prison of pain and other various symptoms. Watch out, world!

On another, slightly more humorous/bitter note, I made something for my new pain doc. I think she'll get a kick out of it. We hit it off pretty well, and she seems to have a sense of humor much like mine, though I would not dare to pull this on any of my other doctors. They'd make me pay in one way or another… but I figure this will emphasize the truth of my statement that this month has been the. worst. month. of my fibro. ever. EVER. (ever.) (The date is set for my next appointment. I'm fairly confident that the pain won't be going anywhere before then, soooo…)

For my 1000th post, I thought I'd do a little something different, something fun. Here's a cool "about you" questionnaire that I got from another friend's blog. It intrigued me, so I thought I'd bring it on over to the dark depths of my lair.

1) If you could change something about yourself, what would it be and why?
I suppose the obvious answer would be that I would change my health-- I'd wipe away all the chronic illnesses and give myself a clean bill of health. I wouldn't remove it from my past; I've learned far too much from my illnesses to want to lose that. I would remove it from my present, though, because I have so much potential for making the world a better place that is going unrealized due to my limitations and it is incredibly frustrating. Also, I really really really miss backpacking and traveling. And do you know how nice it would be to go out for Mediterranean food again?!

2) What’s the farthest you’ve been from home?

Honduras, definitely. Although I supposed you'd have to define "home", since I've lived all over… Still, no matter where I've lived, Central America is the furthest I've been from anywhere in the States!

3) What is your motto? 
If you have a pulse, you have a purpose.

4) What are your hobbies?
These days? Pinterest. Hah. Reading is a big one, as is writing, though I don't do that one as much anymore since it takes so much energy. I'm an avid movie watcher now, too, and I continue to be an artist. I used to hike, work, backpack, travel, cook, clean… all kinds of things. That's a bit curtailed now, but I still enjoy myself. Oh, and sex. Does sex count as a hobby? 'Cause it'd totally be my favorite.

5) What is your favorite ice cream flavor?
My lifelong favorite flavor has been Pecan Praline, but I'm almost equally as passionate about Pistachio.

6) What two things could you not do when you were a child, but you can do now?

Um, well, drive. That's one obvious one. Another thing is write in cursive. In fact, I have a difficult time writing in print anymore-- my default is cursive. I blame that on my school. From fifth grade on, students were only allowed to use pen and were only allowed to write in cursive. Why? To make us more careful, I guess, and encourage better penmanship. I dunno.

7) If you could travel anywhere in the world – where would you go and why?
Ireland, Italy, and Scotland. Ireland and Scotland because they are in my ancestry and I have a fascination with the long and bloody history of the land and the people, not to mention that the land itself is utterly stunning. (To that end, I'd love to visit England, too!) Italy, because of the history of the Renaissance there-- the art, the science.. the FOOD! I want to see the museums and the buildings, and Drogo was raised there for a time.

8) Have you ever met a famous person?
Yeah, a couple. They're just people that a lot of other people know exist is all.

9) What is your least favorite thing about yourself?
Definitely my self-consciousness.  I dislike being so affected by what others think of me, despite my best efforts.

10) One word that describes you?
Quirky.

11) If you were a crayon, what color would you be and why?
Metallic teal, because that's what color I've been on the inside since I was a child. That, slashed with streaks of razzleberry.

12) What is the weather like right now where you are?
Shifting clouds through a blue sky, patchy bright sunlight, kinda windy, but still pleasantly warm though on the cooler side.

13) How tall are you?
5'6. Depending on the the scale, sometimes a half inch gets added, but I just call it even.

14) When you were little – what did you want to be “when you grew up?”
Several things. A marine biologist, passionately; an apothecary (I had a little cupboard with small jam jars I had washed out and kept dried used tea herbs in that I would mix together to make concoctions and "cures"); an opera singer; a ballerina; an author/poet… probably more, but those are the ones that I can remember most vividly.

15) Toilet paper. Roll with paper coming off the top or the bottom?
Used to be an off the bottom girl, but Drogo is rabidly insistent about it coming off the top so I've adapted.

16) Favorite sport you like to watch or participate in?
Not a sports girl anymore, but I was big into soccer as a kid. I was an excellent goalie

17) What kind of food do you prefer eating when you are out?
Sushi. It's about all I can eat these days, out and about, although now that I've added gluten back into my diet I'm able to eat more. I had chicken alfredo at Olive Garden the other night for our anniversary dinner! It was so good.

18) Last movie you watched?
Black Death, last night. I'm right at the end of Save The Last Dance as I type this.

19) Would you like to be famous?
Nope. I don't need that kind of pressure or stress. I struggle enough with people's expectations as it is.

20) What book are you reading?
Hah! Which one? I finished Eragon last night, so I'm working through Eldest today. I'm on book 6 of the Wheel of Time series, I'm also going through Frankenstein again, and I feel like there are some others that I've forgotten or set aside that I can't recall at the moment.

21) If you have $5 million to spend in 5 days, but with the clause you could not spend any of it on yourself or your family, what would you do with it?
Well shoot… I dunno! That's tough. If I couldn't spend it on myself I'd automatically want to spend it on my family, but I would donate to my favorite charities as well as send money to my friends with chronic illnesses to help allay their medical costs. (For instance, see this short little post on the monthly cost of chronic illness by Chronic Mom.)

22) If you knew that you could try any kind of work/employment and that you would not fail, what would you attempt doing?
Advocacy of some sort, I'm sure. Or massage therapy combined with abuse recovery and advocacy. I'm always afraid of damaging people more than helping them, but if I knew I couldn't fail? Heck yeah. I'd be all over that. Definitely a helping profession of some sort.

…I spent the afternoon/evening with a friend of undisclosed name drinking wine coolers (and rum, they had rum mostly) and watching movies.

I regret nothing.

In fact, I feel happier and more relaxed than I have in a while. And especially after the day I had yesterday? It is a huge relief. Enough to make me want to drink again, and soon… which the Dragon does not approve of. lol. Of course, I'll honor his wishes… probably. Sorta.

But man… I feel… relaxed. Happy. Sleepy. I like this "drinking thing" when I do it right and don't make myself sick. I didn't even get drunk. I just got… happy.

It was nice to feel happy again.

Today, I felt like a normal person.

Not that I didn't feel sick; that's just silly. But the activities of the day had me reminiscing of a time when I thought nothing of going out for an evening with C, whereas now it's become a special treat.

It started this morning/afternoon, when I opened the door to let Juneaux into the bedroom to wake up C, and he rolled over and gestured to me while mumbling, "Come here, woman." I lay down with him and cuddled up close, and we dozed comfortably for a time. Then the dozing turned to nuzzling and kissing, which of course led to other more "adult" activities. (I love being married with a house of our own. It's nice to just jump each other whenever we want.) C jumped on the computer to finish the daily missions for Guild Wars 2 and I ate lunch while reading through a favorite book. C was still working on his dailies when I was done eating, so I went down for a nap.

When he was done, he came and got me and I pulled my supplies together for our evening errands and planned fun. We went to see Ender's Game! We've both read the book and love sci-fi, so we've been eager to see the movie adaptation... as wary as I am of movie adaptations of books. I was pleasantly surprised, though. I think they did a good job. We both wished that they had more time, though, because it just felt very abbreviated in many places. It was good, but I don't think it does the book justice. Not like The Hunger Games did. Anyway, we watched the movie and then went for a walk around the mall afterward. The air was surprisingly warm, yet with a hint of coolness that reminded me that fall is upon us. We stopped in a game store and an electronics store to browse a bit, then swung by the pharmacy on the way home to pick up one of my scripts, fill up my water jugs, and grab some more lavender bath salts for me. There is a bookstore just down the row from my pharmacy, so C suggested we go in and look around, and I readily agreed. I popped into the coffee shop and got a caramel macchiato, and it turned out to be happy hour so I got another coffee drink for free! I picked out a cafe latte with a shot of hazelnut syrup, meaning to save it for tomorrow, but I ended up drinking them both while we browsed together.

I had been thinking lately about a particular person that I worked with at the beginning of my judicial process after disclosing my sexual abuse, Detective M. I thought I might see her at the Vigil, and I did see someone that looked similar to her, but she did not show. Imagine my surprise when I turned into an aisle of the bookstore and found her standing there! We had a nice little chat, and we met each other's husbands. She is really happy that I'm working with E and that the HJ is doing so well. She explained that she deals with enough of the darkness of abuse without dealing with the aftermath of the emotions, which is why she avoids the vigils and extracurricular stuff, which I totally understand. I was happy to have run into her. She's a very pleasant person, and I like her.

After leaving the bookstore, we stopped by the library on the way home so that I could return a few books and movies, then headed home. C was playing one of my favorite cd's on the radio and I was singing along. We held hands while he drove, as we are wont to do. I thanked him for the evening several times, because it was just so... normal. I felt like a "real" person again, out for a low-key evening of enjoyment with my husband. It was like the kind of dates that we used to go on, and it was even sort of spur of the moment, a rarity these days.

Tomorrow I have plans as well. We're going to be continuing our Pathfinder campaign, of course, but then another of my friends and I are going to dress up in costume and visit a local bar that's having a post-Halloween fling. Neither of us drink, really, but we're looking forward to dressing up and going out. (Actually, I can't drink, 'cause of the meds.) We won't be out long, I'm sure, but it'll be a fun experience. I've never gone out to a bar with friends before, so this'll be a new experience. I plan to go as a beauty pageant queen, especially because the dress I have for that requires no bra! That's a major win in my book.

I've had some disappointments lately in trying to make new friends, and I've been quite lonely. I don't want to hang out with everyone that I know, as some people are just not good company or they're energy drainers or I just don't want to be around them for a length of time for one reason or another. My efforts to make new friends, though, have been falling flat on their faces. I was flat out called offensive and told goodbye by a girl that I was trying to set up a first meeting with. Another girl and I connected really well and talked practically nonstop via email and text for a week before meeting up for dinner, which went well, I thought. After that, though, she just stopped responding to my texts and emails, and I don't know what the heck happened. Another girl that I was supposed to meet up with stopped returning my emails, as well as one who was just looking for an email buddy. All this within a few weeks, and to be honest... it was hurtful and bewildering. I felt so rejected and unlikeable... so I said as much on facebook. I got an overwhelming show of confidence from friends near and far, and some of my friends/acquaintances here in Y are trying to help alleviate my loneliness. Hence the bar tomorrow night. Unfortunately, some of those people that are taking it upon themselves to alleviate my loneliness are people that I don't actually want to hang out with for the reasons stated above... but I really see no way out of it, since I stated my loneliness quite clearly and publicly. I can't just turn around and say, "Yeah, well, I don't really want to hang out with you!", can I? It feels extremely rude to turn them down. So... yeah. Got myself into a little of a pickle there.

Regardless, I thoroughly enjoyed today's activities, and I'm savoring the fact that I actually have plans with a friend tomorrow! It just feels so... normal. So blessedly, blissfully normal.

Yeah, I know I'm going to pay for this weekend in no small way (I'm already really feeling it from our outing this evening), but in my mind it's totally worth it. Totally. I wish I didn't have to pay a price to engage in the semblance of a social life, but it is what it is. I'll embrace the joy and survive the fallout, as always.

I figure it's high time that I chronicled the events of my wedding day, and I have some spare time on my hands, so I may as well bite the figurative bullet and do it. Fact is, it's so much more pleasant to reminisce than to try to craft a meaningful narrative from my memories... but I know that I'm the kind of gal that needs some solid documentation to refer to in future times.

When my hard drive crashed recently, I lost a few recent photos and things that I hadn't yet backed up, but my greatest loss was the programs I had bought, such as iPhoto, GarageBand, Pages, Keynote, etc. I'm sure I still have the disks around somewhere, but they're hidden amongst my belongings that are now scattered to kingdom come from the move, which is frustrating. Fortunately, I uploaded all of the wedding and honeymoon photos to Facebook, in addition to having all of the wedding photos on a thumb drive. Whew!

Actually, I wrote up a summary of the day over on a bridal site that I frequent, so I'm just going to copy and paste that sucker, with the appropriate pictures interspersed. So much easier... and if I think of anything else, I'll just insert it in the appropriate place in the timeline. I'm a genius!

Without further ado...

*Long Post Warning and LOTS of pictures!*

"Well, I did it! Technically we did it, but I'm going to bask in the light of my accomplishment a little here, since there was a point during the rehearsal when I realized that holycrap holycrap holycrap we're actually going to get married to each other forever and ever! for realsies!, and I was not actually sure that I could go through with the wedding. (See picture for hilarious facial interpretation of internal feelings.)

This is the point during the rehearsal when I started getting nauseous and freaking out and wanting to call the whole thing off, or at least just elope. It's not that I didn't want to marry him, I was just fearful that getting married would ruin our relationship. Plus, I mean, a wedding is a Big Deal and a huge Life Change (for most), and I tend to panic in the face of such things.

However, I got over myself, and you know what? Our wedding was totally badass. I loved it. On the wedding day, I had no panic, no fears, no doubts, no hesitancies... Nothing but assurance within that I was making a damn fine choice and that I was going to be very happy.

The wedding that I spent six months crafting and envisioning sort of went to hell in a handbasket in  a few regards (what wedding doesn't?!), but the wedding that came out of it was even better than I could have imagined. To begin with, our venue for both the ceremony and the reception was a lovely little out of the way section of a local park that is surrounded by trees and flowers. It's called The Hummingbird Garden, because in spring it attracts hummingbirds by the droves. (Hummingbirds are also my favorite bird, and a very personal and spiritual sign of good luck for me, so seeing a bunch of hummingbirds whizzing about and hearing them chirp their happy little messages soothed me in an indescribable way.) I was hoping for cool weather, as a heat wave had hit us, and the projected temps for that day were the low 90's. Ugh. I felt sorry for the folks who had come from, well, anywhere else, as they are NOT used to these kinds of temperatures! It turned out to be very windy instead, and while that really threw a monkey wrench into some of our decorating plans it kept us all cool and comfortable. *Whew!* That was especially a concern as there was no shade to seat the guests in for the ceremony or reception. Several people showed up in the early morning to help us decorate and set up tables and chairs, and they did a fantastic job. (Side note: I got sunburnt that morning while "helping" to decorate the park! So all of the work that I'd done to get rid of my funny spaghetti-strap tan lines was for naught... and it totally didn't matter.) My husband and his brother did great work stringing long strands of beads through the branches of the paloverde tree we were to stand in front of, and even though they did it WAY differently than I had been imagining, it looked so much better their way; very romantic and fairytale-esque.

Fun fact: I've had this idea in my head for many, many years that I'd like to get married when the paloverdes are blooming. (I've also had the idea for a long time that I would marry outdoors.) To my disappointment, it didn't appear that the paloverdes would bloom in time for my wedding. However, two days before the wedding, every tree in town burst into riotous yellow bloom! So I did, indeed, get to be married while the paloverdes were blooming. That was really special to me. (See all the little yellow flowers?) By the way, for those who don't know, "paloverde" literally means "green tree" in Spanish. Can you hazard a guess as to why? :)

One thing I learned in force from the days leading up to the wedding, and the day of the wedding itself, was how to receive from others. I'm a "doer", and a giver. I like to help, and I especially like to do it myself if at all possible. I hate asking for help, because I have this terrible fear of imposing upon others, bolstered by large and unhealthy doses of guilt for stupid stuff. However, the stress of the impending nuptials really ignited my chronic illnesses the week before the wedding, and I was very sick and in a great deal of pain most of the time. My friends and family knew this, and they refused to let me do pretty much anything the entire time they were there. For instance, a friend of mine came over before my guests came into town and cleaned the apartment for me. When my guests got to town, they took over the decorations, spending the entire morning setting up, decorating and guarding the site of our wedding, the assembly of favors, the baking and frosting of special allergy-friendly cupcakes, cleaning my bathroom(?!)... everything they could. And I had to learn how to receive this outpouring of love and care with gratitude. It was difficult. Very difficult. But it also marks that period of time as a very special and intimate time, because I don't think I've ever been so cared for by so many people. I felt so precious and valuable; it was incredible. And I also saw that, while some people may not have felt that I was making the best choice in marrying an atheist, they still loved and supported us as a couple because of who we are as individuals and their connections to us. It was very telling that there was little to no familial or friend drama during our engagement or during the time immediately before the wedding, with the exception of some well-meaning warnings from more religious friends, which I took as a sign of their love, support, and care for my well-being. I saw in a big way what a difference surrounding oneself with healthy friendships and relationships makes when it really comes down to it.

We all showed up at the park at the ungodly hour of 8 a.m. (lol) to set up tables and chairs, decorate the ramada, and string beads from the tree that would serve as our backdrop. While I wasn't allowed to do much, I did end up doing a lot of shuttling and running around in my car. Some of the people that I was counting on showing up to help decorate were completely AWOL, but some people that I didn't expect to come help at all showed up and put in the bulk of the work, so it all evened out. As I mentioned before, my husband and his brother worked their magic on the paloverde tree with our long strands of beads, risking limb and life for beauty, because those things are loaded with some wicked thorns! My coordinator took care of everything, basically. I gave her the general idea that I had for the "look" of the scene, and she passed the vision on. Everyone kind of came together with their own artistic license, and it worked beautifully. There were some funny moments trying to deal with the stiff wind that was whipping through the park, and the men worked mightily to string up a bed sheet at one end of the ramada as a sunscreen for the cake later in the day. It kept coming loose, so one of the guys would climb back up the ladder, shout, "Twine me!", and go to work implementing another method of keeping the bed sheet tied to the rafters. It worked... eventually.

"Twine me!"

Since the only thing I was allowed to do was roll silverware up in napkins, I took off while my minions were still decorating the park in search of cute underwear to wear under my dress. It occurred to me that morning that I had nothing special and fancy to wear, and I wanted something different than the usual, so off to the mall I went. However, everything was closed but Wal-Mart, because it was Easter Sunday. I never knew that everything shuts down on Easter like it does on Christmas, but it is apparently so. I ended up grabbing several pairs of cute panties in different sizes, just in case, and... apparently my butt is huge, because none of them fit. Like, none of the 6 pairs. That was disappointing.

My mom, who was doing my hair and makeup, came over to our friend's house where us ladies were all getting ready, except that she was late, because that's my mom. She did a beautiful job with my hair and makeup, but because of her lateness and the length of time it took to get me ready, we ended up having to skip our pre-wedding portrait sessions that we had planned. Our photographers were very chill and continually reassured me that being late was no big deal. After all they wouldn't start without me. (Um, being late actually is a big deal. For me, anyway. And I SWORE that my wedding would start on time! Which it did ^_^) So we missed the picture session, but we got to the park with a half hour until the ceremony was supposed to start, so we had time for a first look (which was pretty cute!), and then we mingled with our guests who had already arrived. I suppose that this is a little unorthodox, as many people seemed surprised to see me wandering around in my wedding dress, but I didn't even think about it until later.

She's joking, really. It was a posed shot. Convincing though, no?

I had both of my parents walk me down the aisle, because while my step-dad has really stepped up to be a father to me when I had none, my mom has been my best friend my whole life, and raised me all by herself for most of my life. She and my step-dad only got married 6 years ago. I actually wore the very same dress she wore when she married him. My step-dad's mother was dying of cancer at the time, so to honor her my mom wore a necklace that my step-gramma gave her. When I married in my mother's dress, I wore a necklace made out of a kilt pin that my step-gramma had given to my mom, who then passed it on to me. We kind of made a little tradition there, with the dress and the jewelry from my step-gramma, which I thought was very neat.

When we got to the head of the aisle, my parents handed me off to my groom, and I picked up my walking stick from the officiant, which I had decorated that very afternoon while getting my hair and makeup done. It's the one C bought for me the weekend before at the Renaissance Festival (so I wouldn't have to use my walker as much). I had been hoping to do the deed without any walking aides at all, but I realized the morning of the wedding that I would definitely need some support up there, as well as help walking. I was already dealing with a minor flare, just due to the stress of the wedding and having an influx of people from out of town, but the day of the wedding I awoke in some pretty severe pain. My parents helped me walk down the aisle, and my stick helped me the rest of the time, plus I was downing the upper limits of my pain killers. The neat thing is that most people thought the stick was just for decoration and didn't realize that I actually needed it! That was cool.

The ceremony, which we wrote ourselves, was only about 15 minutes long, and it included a Wax Sealing Unity ceremony, instead of the unity candle or sand. (Our officiant was gaga over our ceremony, by the way. He forgot to do it, but he had wanted to print out copies of the ceremony and have them available at the reception for people to take home. He just so appreciated how meaningful and personal what we put together was, not to mention well-written... which I'll take the credit for. ^_^) I had printed out our vows and one of our readings on a piece of paper, and then we melted two colors of wax together at the bottom of the page and stamped it with our very own wax seal, the Celtic knot of eternity. I couldn't find an actual seal that I liked, so I bought a leatherworking stamp and C assembled a handle for it. During the ceremony there was a place where I maintained the whole time that I was going to read a poem, all the way through to the rehearsal. However, I surprised him by having my guitar handed to me and singing "God Bless the Broken Road" by Rascal Flatts. (The only people in on the surprise were a few people that I told, my friend who was in charge of the guitar, and our officiant.)

Twine me! Oh, I mean-- Ring me!

Actually, the order of things was this: song to C, the vows and ring exchange, the wax sealing ceremony, then the piece de resistance. C's best man/brother D was charged with guarding the wooden ring box with his life, which he did, and then handing both rings over at the appropriate time in the ceremony. In all actuality, he pulled the drawer from the box that held the rings and handed C the drawer.

After the pronunciation and the kiss, we scampered off to my husband's truck for a few minutes to ourselves, where quilts and pillows were set up in the bed of the truck for me to rest on. He had bought a celebratory can of Arizona Green Tea for us to split (our favorite beverage, hands down!), and that's what we ended up using for our toast. We drank out of a drinking horn that we purchased the weekend before at the same Renaissance Festival where I got my stick, but I did it wrong and accidentally splashed tea down the front of my dress. (The dress was fine.) Before the cake cutting or drinking horn toast, my grampa said a blessing for the food and for us as a couple, as I had asked him to, and it was very special for me. I wanted to include him somehow, since he has been my father figure for most of my life, and is basically just a very, very good man. I wanted to honor his role in my life, and I think that having him give the blessing captured that well. It meant a lot to him as well.

Catch sight of the ramen box in the background that the favors never got taken out of? LOL

The cake cutting was kind of funny, because C didn't realize that the ribbon around the cake layers was actual ribbon, so he was a little stymied at first while making the cut. He sawed through that sucker, though, and I fed him a bite of the "normal" cake while he fed me a bite of the "special" cupcakes that J had baked. (The "safe" frosting that I had picked up had been refrigerated as per label instructions for the week before the wedding, after I opened it for the cupcake test run. However, even after letting it sit out overnight it was still very stiff and congealed... so the girls used it as a sculpture opportunity and turned my cupcakes into full blooming roses! How cool is that?) Also, Mom outdid herself in creating TWO cake toppers for our confectionary needs. The first one, the one on the big cake, is one that I designed (sorta), but the second was a surprise to me that she brought with her. She used one of our engagement pictures, and believe it or not used the same heart-knot design around the border that I chose for our cake! And that without communicating about it in any way. Great minds think alike :) (Honestly, I wasn't happy with how they looked on our cake... Sloppy, I thought... but hey, I didn't pay for it, so I don't really care! It was a gift from C's dad and his lady.)

Karateeeee CHOP! (Seriously. That's what I was doing.)

While everyone ate, we had a giant inflatable 20-sided die for people to play with, and some rules to go with it. If you rolled an 11 or higher, the bride and groom would kiss. If you rolled a 10 or below, you had to go kiss someone else! Our good friend was supposed to do a fire breathing show during dinner, but it was too windy for him to perform. He did finally consent to do a little show right before we packed up to leave, but the photographers were already gone, so we only got video. It was pretty awesome, though.

My mom and my husband's brother read toasts from our absentee matron of honor and best man, a married couple, since the best man had joined the military and gotten shipped out the weekend before the wedding. That resulted in his wife and son (matron of honor and flower boy) moving to Texas two weeks before the wedding, which we were all sad about. Fortunately for us, my sister and my husband's brother were willing to stand up there with us as our wedding party. (We had a lot of issues with dearly beloved people not being able to come due to finances, health, school, or all three.) After the reception wound down, my husband and I and our families stepped aside to do those wedding portraits we had missed earlier. While we were doing that, all of our friends pitched in and packed up the decorations and tables and other miscellaneous items we had set up in the park, so that by the time the pictures were done, everything was more or less cleaned up. We were out of there by sunset, headed home to change and pack for our night in the fancy hotel room that I reserved with part of our budget. We stopped on the way home to get some sushi, still in our wedding clothes, and the employee manning the register freaked out. It was hilarious! He took a picture of us on his phone, and the owner (who we've gotten to know through our consistent patronage) asked if he could put us up on the restaurant's Fb page. We said sure. :)

I'm really glad that I have the pictures to look back on. While the day did go by fast, it wasn't a blur, but there were so many things that I just didn't see happen. For instance, while we were trying to light the wick on our wax during the sealing ceremony (during our very windy day, remember?), our officiant stood behind us and spread out his robe in an attempt to block the wind for us. I had no idea until someone told me about it, and then I saw it in pictures later! And the pictures spark memories and stories that might otherwise get covered in dust and forgotten.

Sneak attacked! :)

It was a really, really great day. So many things were different from what I had so carefully planned, and I'm grateful for that. It showed me that even when I "lose control" of a situation or hand the reins over to someone else... it doesn't mean that the world will end, or even that it won't get done well. In fact, so many things were done better than I could have done them myself. It was a valuable set of lessons for me, and it was wonderful to be so showered in love and good wishes from those that came together to make the day possible. It really was a group effort; even though I planned it, they accomplished it. I just got to sit back and watch. Oh, and eat cupcakes. And kiss my new husband. I got the good end of the deal, I think...

Also, having just been to another wedding... C and I found it near impossible to refrain from comparing the wedding we were at to our own wedding. I've decided that I love our wedding. As I said, many things were different than I had planned, but still... It was so much fun! It was bursting with personality. The wedding we attended was sweet, simple, and heartfelt, and I think it matched the couple pretty well. C and I, however, are not your average couple, and our wedding definitely reflected that. I have heard again and again not only how beautiful the wedding was, but much more frequently how much fun it was and how it was so "us". That's the thing that people remember, and that's what I remember. We did it our way, our style, and included the things and people that were important to us. That is what made my wedding day not only memorable but meaningful.