Tomorrow is my birthday. Tuesday, that is. I know it's technically Monday right now where I'm at, but I've been awake for a few hours after another few hours sleeping, only a short nap, so it still feels like Sunday to me. Ah, who am I kidding? The days don't "feel" like anything to me anymore. I don't have a regular enough sleep/wake cycle for that. It's all one long day, punctuated by naps long or short.

On Tuesday I turn 28. I can't help but take stock, think about the passage of time and how much I may or may not have left. When I was in high school (during one of my several sophomore/junior years) I attended a prayer breakfast where the keynote speaker was the father of Rachel Joy Scott, the first student to die in the Columbine shootings. His story of Rachel's life touched me deeply, and it also lit a fire inside me that I've never really been able to explain. You see, she had this purpose and direction to her life that makes me ache for something similar, and even though she died quite young, she still left an indelible mark on the world around her with her kindness, her inclusiveness, and her determination to make the little universe she inhabited a better place. The best part is that she did. She knew somehow that she was going to die young, that year that she was shot. She wrote in her journal some time previous that "this is my last year on earth, I have learned what I can" or something to that effect. (I'm going off of a ten year old memory, so it's not exact.) And now that I'm facing the accomplishment of year number 28, it astonishes me because I always felt that I was going to die young, too. I never really expected to reach thirty. I suppose it's because I've spent so much of my life focused on immediate survival, which was the only way to make it through the trauma of the first decade and a half, but the dreams of the future always seemed unreal and hazy, not concrete at all.

When I look back, though, I am very happy with what I've accomplished, particularly knowing now that I was fighting against Ehlers-Danlos the whole time, and some of the other stuff like adrenal fatigue and food allergies as I got into my teens. I've had some grand adventures in my time. I feel particularly fond of my Idaho adventures. They were the ones most closely aligned with my most closely held daydreams of adult life. Have I ever mentioned that one of my most passionate wishes as a girl was to grow up and join an Amish community? The rustic, living off of the land "survival" lifestyle holds a deep, deep appeal for me, and living on the premises of Summer Hill Farm away up in the mountains was a dream come true in a lot of ways. I only wish that I could have stayed longer, or gone up there sooner. The timing worked out, though, to be for the best. I could not live up to the rigors of country life in my current state of disability, so it's best that I moved back to a soft city life before it got too bad! ;-)

I do feel a sorrow, though, for the life that I will not get to live. Chronic illness and intractable pain have changed my life irrevocably, and there is a deep sadness that comes with that certainty. Granted, I'm the most comfortable that I've been in years, now that I have the proper balance and dosage of pain medications, but the thought of years and years of this is… daunting. To say the least. I feel like I'm constantly dancing on the edge of a chasm, and if just one little thing goes wrong anywhere in the chain of events, I will topple over the edge and be broken on the jagged rocks below. If something happens to  the manufacturing or delivery of the pain medication, I'm doomed. If the pharmacy has troubles with stocking (like they have the past 6 months), I have nowhere to turn. I tried getting my meds filled at a different pharmacy, but they all turned me away because my needs were too great. If I can't get the hundreds of dollars necessary each month to buy the meds… I'm toast. So it's not just the thought of the huge drifts of pain that will accumulate through the years, but the stress of not knowing, each and every month, until I'm rolling out the pharmacy door with meds in hand, that seems the most unbearable. It's a really doomy, gloomy thought, so I try to not think about it much. Sorrow? Check. Stress? Double check. Moving on.

I read a really interesting sci-fi book a few days ago called "Factoring Humanity" by Robert J. Sawyer. I don't wanna give away spoilers, but one of the premises of the book is that humanity isn't a bunch of individuals on a spinning rock, totally unconnected from each other, neither is the information gathered over a lifetime lost when an individual dies. Rather, humanity is all connected to one another through what the book terms the "over mind", a collection of the consciousness and information of every human mind that has ever existed. The information isn't lost at death, but rather "uploaded" and saved, like backing up your computer data, and the book goes over the story of how the over mind is realized and explored by a few humans at first, using the information sent to Earth by intelligent life on Alpha Centauri over a period of ten years via radio signals. I know it's just a fictional book, but it really does give me a framework for understanding the world around me that really appeals to me and just makes a lot of sense in some ways. It's given me much to think about, in any event.

That brings me back to the idea of "making a mark" on the world around me, though. Discount the idea of the over mind and just focus in on the thought that when a person dies a shadow of them lives on in a way through the memories of the people they interacted with. I would really like to be able to say that my interactions with the people around me left them happy and better able to cope with the harsh realities of life, you know? Because life is hard. Really hard. Anyone who says differently is selling something. Hehehehe. (Princess Bride reference, in case you didn't catch that.) We all know at least one person who is definitely not a delight to be around, and who seems to just make everything a bit harder to bear; someone who sucks the energy and life from those around them and either doesn't know or doesn't care. I don't want to be that person. Even if I have excuses that seem valid, I do NOT want to be that person. My young life was ruled by a tyrant of that sort, and I know how miserable it can be under their thumb. I absolutely refuse to do that to anyone else if I can help it. I think I've done a pretty decent job of avoiding that pitfall, even with my new neediness that came with the nosedive of my health. Perhaps my "mark" is simply that I made some people happy some of the time, made their lives a bit easier, even? I mean, in a first world world, what else is there?

So I'm turning 28. My husband will be 30 next month. I remember the days when 30 seemed so old! My girlfriend is even older than my husband, if you can believe that. Age never really mattered much to me as much as personal maturity, although I do tend to have a thing for older men. Daddy issues, most likely. I'll own that. lol. So I guess that's it. Just some musings on my life and what I hope I'm doing with it. At this point I don't feel like there's much I can achieve anymore beyond interpersonal goals. I'm just too damn tired. Somehow, I have to make peace with my multitude of dreams and my achy, sleepy reality. I have been doing "better" the past couple months, though. I'm starting to feel like myself again, really and truly. An altered version, no doubt, but no one stays a static version of themselves forever anyway. I'd be altered no matter what.

I've started going for walks again, though, and I get out of the house twice a week regularly, once for grocery run with Corey and once for coffee date with Saka. I've even stopped throwing up all the time, thanks to a lovely med they give chemo patients! I have to take it consistently, though, or else the nausea sneaks up on me really fast and I find myself on the couch clutching my vomit bowl within a span of ten minutes from feeling fine. Gotta keep it in my system. I can't help but laugh sometimes at how different my every day life is from what I'd ever imagined it being!
No artsy cafes or guitar in the park, no challenging classes out at the college with a yoga session afterwards.
No five mile walks in the muggy warmth of a summer's night.
No swell of a pregnant belly.
No certificates of continuing education, no job, no paycheck.
No numbers in my savings account.
No trip to Europe, touring art and culture and food.

There are losses, to be sure. I gotta quit that or I'll start crying. But hey, everyone has losses, and everyone has gains, too. I know I'm better off than I was a year ago, and for that I'm very thankful. Here's to another year of, um… tea and Netflix! Yeah! And a circle of good people who love me very much. That's always a good one.

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.)

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.

So today we plan to go visit the local ren faire. I'm inordinately excited, as I always am when it comes to renaissance-themed events. I plan to wear my green dress (the one I initially bought to get married in), and, joy of joys, I can get away wearing it without supportive undergarments! Freeeeeedom.

My friend K devised an ingenious sling of nylon webbing, carabiners, and something that looks like a wire baking rack. It loops over the handlebars of my walker so that I can rest my feet up off the ground and be pushed on the Chariot. It's a foregone conclusion that I am not up to walking around a dusty fairground for hours. I woke up with pretty severe back pain, especially low back pain, so even getting to the kitchen from the couch is a bit of a challenge for me today. I saved pain killers especially for today, though. I will not miss out on more things, just because I'm sick! I'm already having to miss K's wedding, although that's really more of a financial thing than anything else… I missed being able to spend a week with J and had to content myself with just a few hours. I had to give up my job completely this past week (which my heart is still crying about)… no. I draw the line at ren faires. As long as I have someone willing to push me, I will force myself to stay upright and conscious long enough to at least make a pass through. I do have to make a point to take pictures of the ingeniously designed sling, though. Many people have asked for them.

Despite the high pain levels, I am feeling a bit cheery today, probably because I'm expectant about my adventure. I need to shower, but I'm feeling so buoyant that I may decide to do my makeup as well! I've compiled some really neat eyeshadow tutorials on Pinterest, and I've been dying to try one of them out. So far, though, I've not had the energy or the occasion. Seeing as how C recently laid himself down to sleep and won't be up again until 1 pm, I've got hours, so I can take my time and just do a little bit at a time. Once the sun comes up, I will bring my makeup out into the living room and set myself up a little makeup studio. Maybe I'll put on one of my favorite animated movies while I do that. I'd like to re-do my toenails, too, but that is not going to happen today. Too much back and ribcage pain for me to be bent at the waist for more than a few seconds. Besides, sparkly nail polish doesn't ever look abominable, even when it's chipped. Plus I'll be wearing boots.

Oh! Oh! My friend L, who moved to the East coast, is in town this week! She showed up the other night and surprised me :) It was really nice. I was feeling pretty awful (that was after I'd been throwing up, but was recovering), but she already knew the status of my health so there was no pressure. We hung out on the couch together, watched Pirates of the Caribbean, and chatted up a storm. Heyyyy… maybe she'll come back over and do my toenails for me? I'll be seeing her at the faire today, as well.

So far my tactic of drugging myself senseless with sleep aides and Benadryl has worked. I've slept a lot, and it has helped me to stretch out my remaining pain pills further than I ever anticipated. I'm really proud of myself for making it this far. It's been miserable, to be sure, but I'm still here, and I made it work. Now, to just make it to Monday morning… God, I hope they give me a script. I've been keeping track of my pain, (the new blog, remember?), I keep track of when I take my pills, and I've got the timeline of my symptoms and pain, so it's pretty clear that I'm legit. Not to mention the fact that M will be with me and I won't be alone, so I have someone who's seen my sickness firsthand and has taken care of me. She can add valuable perspective, and help me to advocate for myself. I couldn't find anyone else to take me up there on Monday, though I asked around, so she will be skipping out early on the last bits of the ren faire (she's staff there) and driving me up at butt-thirty in the morning. We'll be leaving by 3:30, I believe the plan is.

Have I mentioned that I'm terrified? I'm so scared that they will refuse to help me… or worse yet, want to help me but be unable to. I'm scared that I'll be labeled as a drug-seeker, as a faker, that I won't be taken seriously, and that I will be condemned to try to live with this pain as best I'm able. This is, essentially, my last hope at this point. These are the people who can help make my life livable and bearable. Whether or not I am able to control my pain dictates whether or not I'll be able to participate in life again, to hold down a job, to drive myself places, to have fun adventures, to have sex with my husband, to keep my home in order, to exercise and help my body to be as healthy as it can… It all kind of hinges on what goes down this Monday. And that, my friends, is terrifying.

Ok, yes. Even though today hurts, and it hurts a hell of a lot, I have some small satisfaction in knowing that even if I did nothing else today, the bed is made.

This weekend I worked the information booth at a gun show. I was determined to put in all of the hours, both days, no matter how crappy I felt/would feel... and I did. I earned enough money to knock out several of my bills, which makes the financial burden lighter for my beloved.

I told him that I was doing it for him, and he corrected me with, "No, you're doing it to pay your bills and be a responsible lady." I corrected him and said that I already know how to be responsible-- I've been making ends meet and paying bills for years! I'm doing this for him, because he is the one that most of the bills fall to, and I want to lighten his load. I don't think he had thought of it in that way.

Still wrestling with the depression that comes with this awful pain, though now that my menstrual cycle is about to restart I think things will get better. I've been craving affirmation and trying to extract it from C, but it's like trying to get water from a stone. Spontaneous words of affirmation are not his strong point. (Understatement.) He is the type that will offer a few well-placed words to go along with an accomplishment, but he's not the cheerleader type. That's my area. He is the steady, solid rock that I can rest upon, but I have to remember that this solid rock isn't also a sparkly crystal cavern of delight. Weird analogy, I know, but it's the best I've got right now.

Anyway... just pushing through, one day at a time. I really want to get my house into shape, and I'm working on it one task at a time, but I find that I need some help again, probably... if I want to get any deep cleaning done, anyway.

I may be able to get my computer fixed for free. How I would love that... booting up C's big old computer is a pain, so I don't do it often. Plus sitting upright in his chair tends to increase my pain. I don't know what it is about this chair. But I do have my smartphone, which is proving to be a great boon. I found a game that distracts me for hours at a time. It's called Plague, and the objective is to cultivate and spread your plague to wipe out all of humanity. It's really a ton of fun, and requires strategy, which is something that I am weak on and want to improve. I also found a really neat fibro-tracking app that I can record my pain levels, symptoms, med dosages and times, etc. It's a great tool.

I came across this list in my Facebook notes. I wrote it on February 15th, 2009. It's funny to look back at goals we set for ourselves and then kind of forget about, isn't it? I mean, I didn't forget the goals, but I forgot ever writing them out. It's also neat to see how many of them I've actually accomplished.

16 Goals

Within one year...
Be a proficient guitar player (Yes, this did happen. Since then, I've performed more than I ever dreamed I would, and in so many neat event and occasions... and I'll be performing again this weekend!)

Within five years... (That would be February, 2014. I've still got some time!)
Be at least semi-fluent in Spanish (Yep. Especially with this last Spanish class that I took.)
Have a part in leading someone to Jesus (Sort of. The boys include me as part of their conversion story, so I guess that counts.)
Know how to survive in the wilderness (I learned a lot about this in ID. I can't say that I could head out with a piece of string and a knife and survive, but my odds have definitely increased.)
Serve a term as a missionary (Sort of. My stint in ID counts, in my mind.)
See my dad accept Jesus (I didn't realize at the time that he does, actually, believe in God already. So this goal has become irrelevant.)

Within ten years... (February, 2019)
Visit 5 new states (Check. I accomplished this with my move up to ID and my cross country road trip.)
Own a python (Check. She's beautiful, too.)
Be completely debt-free with a savings account (Doesn't have to be much. It's just so much more secure...) (I'm almost there. Well, I just have to pay off my credit card, but I'm throwing everything I have at that one. Other than that, I owe no other debts, other than wanting to pay R back for all the medical bills I've incurred.)
Know basic natural healing methods (I know some now, but I could stand to learn more.)
Be able to eat wheat and soy (Okay, so maybe I am dreaming a little bit now... ^_^) (I've come to terms with the fact that this is never gonna happen.)
Own a new car (I wonder if Betsey will make it to ten years?)
Be married, Lord willing (Check.)
Sell an art work
Write a book
Save a life (I've already done this in my life, but I guess I'm ambitious and want to do it again.)

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.