I'm going to be posting two posts today, but the other one will be kink-related, so be aware. Or beware. However you feel about that particular expression of sexuality.

I've been feeling… off… lately. I think since the Arthritis Introspective G8 Conference in Milwaukee two weeks-ish ago. Don't get me wrong, it was a great time and I made some fantastic business/advocacy connections, not to mention at least one solid friendship which I suspect will last a lifetime. I didn't learn much that was new to me, which surprised me, honestly. I didn't realize how much I already know about rheumatological diseases in general, and living with them in specific. I impressed myself, actually. lol. However, it was difficult in the sense that there were a lot of people there who do all this amazing volunteer/advocacy/professional work to support the arthritis community and raise awareness and change legislature to benefit the citizens of the arthritis community, and it left me feeling basically like a big, fat loser.

I already have a difficult time with the reality of having to leave my work at the Healing Journey, which  is my baby, having nurtured it from the ground up and having actively been a part of almost every step of its growth until a year and some change ago… whenever it was I stopped working. Two years? Yeah, I think so. Time flies, really, and I forget when I stopped doing this or that. They aren't exactly milestones that I wish to remember and celebrate. Although… maybe I ought to do just that? Maybe I should pinpoint the milestones of my disease(s) progression and find some way to look at them in an optimistic light, or at least not be totally broken over them. Have a tea party with friends for every "anniversary", or do something symbolic and meaningful to honor the tough decisions I've had to make in the past. I like that idea. I personally feel that symbols and representations are immensely powerful and can be crazy healing if used in earnestness. It goes along with my slow research and interest in paganism/nature-based "religion". I'll have to think on that and see what comes to mind.

Speaking of symbols and representations, did you notice that I got my nose pierced?! Oh, and my lobes got another hole in them as well. This ties into my "funk" in a sense, because one of my greatest gripes about my time as a super Christian is that I had to so severely curtail my personality and present an image that wasn't really me, and to me that hearkens right back to the extremely abusive and dysfunctional environments in which I was raised. I was actively told to keep the true nature of our home life a secret from the authority figures in my life, such as the school teacher at the small church school I attended from first to eighth grade. At home as well, I learned early to cultivate or feign an interest in whatever my step-dad was into, to avoid as much pain as possible and garner as much affection as he was willing to dole out. So that means that the Raiders became my football team, I loved video games and Final Fantasy VII, I watched WWF wrestling and had a favorite wrestler, though I deviated there by favoring Goldberg instead of Sting. It was a survival mechanism, in childhood as well as in adulthood. I needed an identity, acceptance, because I had so long stifled my own identity and could not accept myself. How could I? I'd been told in various ways, most non-verbal, that who I was naturally was unacceptable. Such is the nature of abuse, of the power and control wielded by the strong, abusive person or people. They efface the identity of the weaker, tell them who and what to be, becoming ever more powerful with each act of compliance. It's awful.

My teenage years, the high school years, were a reprieve. I dressed how I wanted, collected and hoarded the things I found interesting, listened to "my" music… but it left me isolated and ostracized, for the most part. I always had a few friends, but most people stayed away from me. Apparently they were afraid or intimidated because I seemed so self-confident and assured, but it was a complete facade. I did enjoy those years of relative freedom, though. It was during that time that I met my husband and we fell in love. He became the person who knew me the best; my true self. Every gory detail was open to his eyes and ears… eventually. And he accepted me. That laid the very first foundation for healing, though it was many years before any significant healing would take place.

Now, I'm recovering from my years in bible college and as a worker for my denomination in a small, backwoods area of Idaho that was more conservative than anything I'd ever seen before. I know that I was probably considered very liberal, though I was considered extremely conservative where I came from. It's funny how that superficial identity can shift from place to place, depending on the perceptions of those around you. But I'm still scared to fully express myself, because of social media and the circles I'm still friends with. I want to be "me", but I don't want to drive away or alienate my old friends whose views I understand but don't necessarily agree with. And more than anything I don't want to be evangelized. I'm not "lost". In fact, although I've felt so "blah" since the conference--something I later realized to be the product of travel exhaustion and PMS--I still feel the strength and confidence that I possess in myself keeping me afloat. I have times where I doubt myself, get down on myself, even hate myself still. It happens from time to time. But one of the things that I hated most while trying to be a Christian was having to give away my power and give the credit for my strength and my accomplishments to god. You know what I mean-- you are never actually the one who does anything, because it's god engineering the circumstances and giving you strength and telling you what to say, right? It reminds me of playing with dolls or figurines/action figures. I said what I was supposed to, but I was constantly bewildered by the fact that I was the one who worked hard and poured out my effort and strength, yet I was supposed to ignore my own willpower (because relying on your own willpower is a sin, I think) and demurely say "praise god!". It just didn't sit right with me. Again, probably because of the lifetime of abuse and domination where my power was taken away again and again and again, my accomplishments diminished and ignored.

I get that a lot of my beef with my denominations beliefs stem from my sensitivity to abusive tactics. Some might say that I'm overreacting and interpreting abuse and dysfunction where there is none, but I believe that, because of my sensitivity, I see what others may not be aware of. They may be fine with ignoring their part in things and giving all the credit to god, but I'm not. Human beings are remarkable, and capable of so much. I think that it does a disservice to humanity and our potential when our strength, our creativity, our amazing power to endure the unthinkable and come out the other side hopeful and gracious, all that is attributed to the subtle workings of a divine being who is way out of our league when it comes to that kind of stuff. What about the incredible contributions of atheists or other religions to humanity? I've been told that it's god working through them without their knowledge, but isn't that kind of invasive? If a deity is going to pop into my head and use me as a vehicle for his/her/their accomplishments, I'd kinda like to know about it. It feels like a conspiracy theory for Big Brother or something.

Anywayyyyy… moving on from that soapbox… you may have guessed this by now, but my piercings are symbolic for me of trying to be the best version of myself that I can be; my true, honest self. It's an "I've wanted this for a really long time, dammit, and I'm not going to let my fear of rejection or criticism stop me from expressing myself anymore!" statement. And you know what? I love my nose ring so much. I think it looks really attractive, and I like who I see in the mirror a little more now that I have it. I feel a little more badass, more ready to take on whatever comes to me, a little more bold and creative. I feel unstoppable, really. All that from a couple little circlets of metal. Go figure.

This feeling of uncertainty, of "blah-ness" that's been haunting me for the past five or so days has also led me to take a step back and evaluate my life. I don't want to waste away on the couch for the rest of my life, but I do recognize that I'm in a transitional phase right now. It won't always be like this, but right now I'm trying to find diagnoses and learn to manage what I already know about. It's a lot of work and time and energy, and I don't have much left over for anything else except maintaining my marriage and a few select friendships. In fact, I really need people to be proactive if they want to interact with me at this point. I'm exhausted all of the time, and I am sleeping a good deal of the 24-hour day. I spend a lot of time with my cats and snakes, too, when I'm awake. Mostly because I can do that while I'm doing other stuff, but mostly mostly because my cats follow me around and sleep next to me and take my spot if I get up for something.

I have a few bits of news that's developed recently, as well. Firstly, I was denied disability again. Everyone who knows me and has heard is more or less incensed, because they believe that I qualify without reservation, and moreover that it would be a huge benefit for me and my husband. I feel the same way. I'm really ticked off, because they claim that they carefully reviewed my records, yet the list of diseases I have is not only incomplete but one of them is totally wrong!! Nowhere in my medical records does it state that I have hyperthyroidism. I struggle with hypothyroidism, something that's given me much grief and physical suffering through the years. Uncontrolled, it is debilitating in its own right. Corey and I both agree that it's time to seek a lawyer's help. I also received a private message from an acquaintance who is a disability lawyer in a different state, and she said as much before I even discussed it with her in depth. I felt quite affirmed in kind of a silly way while Corey and I were discussing the disability ruling and our next move. I suggested that maybe I am just "being a pansy" and I'm not as sick as I think I am? Maybe I just need to suck it up and try harder? Corey looked me in the face and said, "No. You are not a wimp or a pansy. You are sick, and they're wrong." I know that if I were simply being lazy, he would call me out on it. He agrees and says that he'd tell me to go do something. lol. It was nice, though, knowing that my hubby not only agrees with me, but he understands the severity of my issues and believes that I am doing my absolute best to be "well" (or just "better") and productive. It warmed my heart.

In other news, I began physical therapy today! The great part is that she comes to my house once a week, so I don't have to arrange transportation for that as well. It's hard enough trying to find rides for all of my dr's appointments, much less the ones in other cities or states! Seriously. That is the biggest thorn in my side besides the Intractable Pain. (The pain which the good ol' disability folks didn't list among my diseases or take into consideration, apparently.) I have a chart of exercises to get through, and the repetitions are low for now. We are starting small and working up, not only because of my hypermobility, but also because of my extreme fatigue. At first, my goal is to do all of the exercises within two days. She showed me sitting variations for almost all of the 9 exercise moves, so that's a really good thing for me. Did you know that there's a sitting variation for crunches?! Yeah. I'm super freakin' thrilled, especially because I mentioned that doing sit-ups or crunches on the ground makes my hips pop during every rep and it's quite painful. I had to deal with that through years and years of high school P.E. classes, and I'd like to avoid it if at all possible… which it is!!! Joy to the world ^_^

That's about all for now. I feel that I've rambled quite enough for one night, and I still have that "other" post to do. I have a project that I'd like to get done this evening as well, so maybe I'll take a typing break and work on that for a bit. I plan to get on the internet more frequently in the near future. I have the desire, if not necessarily the drive for it. I was feeling guilty for a while, but then I just realized that this is the phase I'm in right now. I don't need the internet as a constant distraction from my raging pain, because it's being managed fairly well, and I have other things that take up the increasingly minimal hours that I'm awake. In all truthfulness, too, being online exhausts me. It's just tiring, and I'm already so tired that I don't feel like handling that extra tiredness as well. That's usually why I avoid it these days. But I'm starting to feel a hankering to participate again, to come out of my isolation a bit, and the internet is the way to do that. So I may be posting more often, lurking on Facebook a bit more, and hanging out on the kinky message boards I read more frequently. Just as I'm launching PT to strengthen my body, I think that I could use some social strengthening as well. I'll give it a go, anyway.
Toodle-oo!

Corey came home a day early from hunting! So he's been around as I've been slowly wending my way through the day with the intent to pack interspersed with frequent naps. I'm happy that I got to see him before I take off for a week, but it would have been okay had we missed each other like we thought we were going to as well.

I was in bed, just on the edge of slipping into the depths of real sleep after a phone call had awoken me, and I heard the front door open amidst shuffling sounds and a muted jangling of keys. Confession: I can't stand to be encumbered by layers of fabric when I sleep, so I didn't feel that I could jump up to investigate in naught but my birthday suit! I lay there drowsily alert, trying to decipher activity based on the carrying sounds when Corey breezed into the room, all salty, sweaty woodsmoke smell and smiles, bending over the bed to kiss me. It was a warm kiss, but something was awry-- he was eating  licorice!!! (I despise and detest licorice, especially the black kind! Oh, and he knows this quite well.) I determinedly kissed him anyway, but exclaimed afterward how cruel and gross he was, and he grinned and laughed and got a kick out of that.

The day has been a long, slow one. Much resting on my part, and the essential absence of any kind of deadline for being packed or leaving today has been a welcome knowledge. I fell in the shower today when I tried to sit on the stool I have. It slipped out from underneath me and I crashed down, banging my back on the edge of the stool's wooden seat and wrenching my hip a bit. I suppose I shrieked amidst the resounding thump and crash of the fall, so Corey came in to see if I was okay and found me huddled on the floor of the tub, unable to get up by myself and curled in a painful little ball repeating my mantra of "Owwwww, owwwww, ouch, owwww….!" He helped pull me to my feet and I was suddenly incredibly grateful that he'd come back a day early.

My sister in law accompanied me to dinner with the friends of mine that I celebrate the Anniversary with, and we all had a nice early supper at Olive Garden to celebrate the Anniversary. Everyone got along well, which is good. I was not really worried because C is a very charismatic and personable person, but she's not religious at all and my friends are, so I was hoping there wouldn't be a clash of interests or basic world views. We stayed away from the religion topic, though, and all was hale and hearty.

After coming home and all relaxing with books and television shows of choice for a while, I convinced Corey to come cuddle with me as I was going to be falling asleep for a bit (maybe the whole night, maybe just a few hours? I have no clue at this point, though I'm rather hoping for a whole night's sleep). We lay there in the dark for a bit, talking about his hunting trip and how it went, but soon the conversation ebbed away and I found myself dozing off. Just about then Corey got up and left the bed and I was very disappointed that he'd get up and leave just as I as falling asleep. What a super awkward moment to disappear, right? I vocalized my disappointment, but it turns out that he was just closing the door that had been propped open so the cats could come and go as they please. He came back to bed to be with me again and, well, all I have to say is that conjugal relations are awesome, and even if it's been a long time and you feel like a broken record by coming on to your partner again and again without apparent success, keep at it. Keep at it only if you mean it, though; when the time is right a lovely experience will unfold.

I'm gonna come straight out with an honest, brutal truth here that some people may find uncomfortable talking about: stress kills sex drives, and lowers intimacy if you let it. Truthfully, it has been a long time between the last time we were intimate and this time, and that's because we are frazzled a great deal of the time. Sex involves and requires a lot of emotions, and a lot of energy too, and when you're dealing with a mountain of stress being poured over you like a thick, viscous pudding it's really hard to dig up the motivation to do something that isn't "vegging", you know? For me, having sex actually helps me to cope with stress better and it alleviates my depression and anxiety to a degree, but my husband finds himself more drained by the act than I do. I'm revitalized by sex, but he is exhausted. I have a higher, more demanding libido than he does even when things are normal and especially so when things are stressful and out of sync, so that's something that we have both become aware of and keep in mind. It took communication to reach these conclusions, but there was a period of time where I was hurt and confused by his constant rebuffing of my advances; I thought that he no longer wanted me in that way because I had gotten sick, or that maybe he didn't find me attractive anymore, or that he was afraid to hurt me, or that he really just didn't care about me much. I was so wrong, but you can understand how an almost daily (or several times daily) rejection of a flirtatious sexual advance can give the impression that one is unwanted by and unattractive to the object of the flirtation.

Sex can be a huge source of assumptions, miscommunication, frustration, and simmering resentment, anger, and bitterness, and sometimes it's awkward to talk about but you just gotta do it for the health of your relationship. I'm serious. (Plus once you get the kinks worked out and both partners feel understood and validated, you can get some serious toe curling action up in there! If that isn't worth it, I don't know what is.)

Now I'm going to attempt to sleep (again, for however long) and ignore the steadily mounting pain. Falling in the shower and banging yourself up does nothing to alleviate an already worsening flare. Maybe the fatigue will overpower the pain, yeah? Funny how you can play one symptom against another to achieve a benefit to yourself, huh? The Monopoly of Illness, or some such.

Today is the 8th anniversary of The Accident. Back in 2006 I was attending a small Christian boarding academy (high school) about 4 hours away from home. There were several of us kids from Yuma there, so the parents had worked out a carpooling system for the occasions that we came home such as holidays or Home Leaves. This particular event was a home leave, and several of us piled into the Astrovan owned by a good friend of my family, whose son and granddaughter both went to school with me. The other Yuma kid declined to go with us because he had some other plans, but a Korean foreign exchange student that was good friends with the son and on the same Acro team as the son and I joined us for the trip. He was excited, because he wanted to see more of America before he graduated and went home at the end of that school year. He couldn't stay and tour afterwards, because apparently Korea has a law that mandates all young men to do a certain amount of military service once they are done with basic schooling, and I'm also pretty sure that he didn't have that kind of money.

The stretch between Phoenix and Yuma is pretty barren and empty, but there is a town almost exactly halfway between the two, and we stopped there for snacks, bathroom break, gas, and Fred, the dad, put air in the van's tires because he thought they looked a little low. (There are SO many details that I'm omitting, but I don't feel like typing that much, and it would be a small pamphlet at least if I did.) It was not too far underway from that town that the back left tire blew out, and the van swerved then rolled and flipped several times. I was hit in the head with something flying around the interior. (I think it was the old school portable tv, the heavy ones? Or maybe it was some sort of tack because Fred hadn't emptied out the van from the last time he had been at the stables to tend their horses. I don't know; I'll never know.) The blow to the head caused me to lose consciousness and go blind for a period of time I estimate to be about half an hour, 45 minutes maybe? I was very devastated because I thought I couldn't read anymore. (A famous line/joke from the experience is when I was led to Fred after being freed from the van and I told him I was blind. I was crying about how I wouldn't be able to read anymore, and Fred comforted me by saying that he would read to me. My response was to wail, "You don't understand-- I really like to read!!" LOL)

As far as injuries go, I was blind and had a severe concussion, was having an asthma attack, had an internally bleeding mushy spot on my skull from being hit, whiplash, of course, and there was some injury to my ribs as well. Oh, and I cracked a toe. The granddaughter, A, had unbuckled her seatbelt to lean forward and grab something just as the crash happened, so when the glass window from the sliding door popped out she was thrown through the opening during one of the flips or rolls and then the van rolled over top of her. She was Life Flighted out of there (as as I) and ended up in ICU for a week with a lacerated spleen and a fractured pelvis, along with the requisite whiplash and concussion.

The two guys, J and the Korean S, had bad whiplash and S had a bloody nose. I'm not sure if they had any other injuries, but they didn't say so, and they still went to play in the tackle football game a day or two later that they had been planning on. They are both big guys-- tall, solid, lots of muscle, and sturdy-- so they were an important part of our school's team and they didn't want to let the team down by not playing. *smh* Men.

Fred threw off his lap belt when the van began to swerve and leapt into the space between front seats to help control the van, so he was unbuckled and tossed like a salad as we flipped to and fro. He also ended up in ICU for a week, but they didn't fly him out because he looked okay until after A and I flew away. He collapsed and they ambulanced him to the Phoenix hospital as fast as they could, and all I remember now of his injuries is that his spleen exploded into a bunch of pieces. SO not good. He went into emergency surgery, obviously.

When I came to after the crash itself, I was blind (blackness, everything blackness with purple lightning bolts shooting through and across in every direction) and disoriented and sooooo tired and sleepy. I tried to unbuckle my seatbelt for a minute or two but it was too hard and I couldn't do it, so I began to drift off to sleep. Turns out I was the only one in the van because A had been thrown from the vehicle, J and S jumped out as soon as the van stopped, and Fred jumped out to help as well. We landed on our side, with the driver's door on the ground, and the window beside me had broken but the blanket I was using as a pillow while I napped kept the broken glass from reaching my face or neck.

The van was steaming as it was resting and J thought it was smoke, that maybe the van was going to explode and I was still in it. Everything smelled like gas. I used to love the smell of gasoline, now I'm not so fond of it. J came in and kept me awake with talk, which annoyed me to an incredible degree, while he cut me out of my seat belts. What had happened is that Fred's lap belt got tangled up in my shoulder belt while everything was being shaken up, and I couldn't see to undo it and J felt that it would take too long. The van was about to explode, remember?! Because of my weakened state (concussion, asthma attack, shock, etc.) I was unable to lift myself out the hole above me that had been the sliding door's window, so J kicked out the windshield and took me out that way. I jokingly flutter my lashes at him and swooningly croon, "My hero!" when that story is told around him, hehehe.

There are a ton of funny and touching stories that go with all of this, and maybe I'll share a story every day or every other day this week in honor of Life and Second Chances. For right now, I'll sum up by saying that even though there were some scares and lots of camping out in the ICU waiting room, we all survived that harrowing experience with very little in the way of long term damage. It's practically unheard of! We were and are very fortunate, and that is why Fred and I like to Celebrate Life on our Anniversary, though the others (J and A) don't see the point or enjoyment of it and choose not to celebrate it. J feels very guilty because he was driving, but it could have happened to anyone. Really. A lives far away, and S is back in Korea, so… Actually, I think they are both in Korea, come to think of it! A married a military man, so…

Anyway, if nothing else at all I learned the value of every split second. We carry on as though life is assured, and rightly so I think or else we would be paralyzed by the thought of impending mortality, never enjoying a thing or being productive, but it is the realization that life and consciousness can be taken away in the space between two breaths that really gives context to the value and delicacy of life itself. For instance, yesterday was David S's birthday. My adopted dad who died of cancer last year. Yeah. The birthday of a dead man whom I loved dearly, and then the next day a Celebration of Life, another "birthday", if you will" with other people that I love dearly, who are all still here and kickin'. It's just so… puzzling. There doesn't seem to be much rhyme or reason to it, except the certainty that

Life will end. Yours, mine, your fish, the Pope, and certainly that pretty caterpillar you saw last week… our lives will inevitably cease at some point. Mine could have stopped on October 25th, 2006, but it didn't, and I'm very grateful for that. My essence, the core of who I am, my conscious soul or whatever, that could be snuffed out by any number of things even while I type this blog post. But I'm still here, so I'm gonna enjoy it and try to be a good person and make life as good as I can for those around me who are still going as well. It's as much of a goal as anything else, right?

Happy Anniversary, Life!

Guess what, y'all? It's National Invisible Illness Awareness Week! I'm about half a week late on this, because, guess what else? Yeah, that's right-- I was busy being sick with my invisible illnesses ;) Funny how that works, ain't it?

Anyway, I'll be catching up with a few little things here and there that other bloggers are doing to 'celebrate' this week and to bring awareness to invisible illnesses and what life with them is like, but for now, all I've got is a post from my other blog, the more public one, that gives a little insight into what life is like for the invisibly ill. It's hard to deal with diseases that no one can see, and ones that aren't main-stream, popularly accepted diseases like cancer or ALS or autism. ALS and autism have some symptoms that are on the more visible side, but for the most part they suffer in relative anonymity.

When you have an invisible illness, it's easy to judge and be judged. "But you don't look sick!" I know, I know. In fact, I look pretty good, if you discount the weight gain. (Some would even say that I look better now, with the extra weight and curves, than I did before!) But the suffering is just as real, just as valid, as someone with a broken leg or a shattered spine. My disability is just as devastating and pervasive as anything else you can think of, but I don't have the "legitimacy" of a cast or an IV pole or something tangible that signals I've got a terrible reality squatting on my shoulder at all times. I suppose that I'm "lucky" in that I need my walker, the Bling Chariot, to get around outdoors because it lends me an air of disability that wouldn't be there if I simply limped around and sat whenever I got the chance. People often ask me if I've had surgery or injured my leg somehow, though. When you see an otherwise healthy looking young woman your first thought will probably not be, "I wonder if she is dealing with crippling physical symptoms that have totally devastated her ability to participate in society in a regular manner?" I think that now, when I see people with a particular gait or look on their face. I watch people much more closely now, and I understand a bit more than I did previously, but here's the thing: until you or someone you love has experienced something, you just aren't going to think about it. You don't know, you don't know a damn thing, and you really can't. And you know what? That's okay. That's okay because how could you possibly, unless someone explains it to you?

That's the whole point of Awareness Weeks. People don't know, they don't understand, because it's not visible and it's not obvious and if you haven't had experience with it you could never, ever guess what it's like and what we face. I didn't know. I'd never heard of fibromyalgia or chronic pain or connective tissue disease or Addison's or thyroiditis until they all happened to me. Food allergies I'd heard of, in passing, but I didn't know anything about them until I was forced to, for my own survival. I was told by a doctor yesterday that I am one of the most well-educated patients she's met, and though it's not the first time I've been told that by a medical professional it always shocks me. Shouldn't at least the people who have the diseases care? Shouldn't they want to know, to learn, to be as in control of these crazy diseases as you can via knowledge? But apparently many choose the path of ignorance, even when their very own body is on the line.

In closing, I can tell you that some of the most moving and profoundly meaningful things I've heard since I got sick came from family and friends who have told me that when they learned the name of what I have, they went and researched to understand it better, to understand me and my new reality better. My friend, The Artist, shares stories with me about how she defends me to friends of hers that see my comments and posts on Facebook through her account and question the veracity and legitimacy of my claims. Am I faking it for attention? Exaggerating? Fibromyalgia is just a "throw away" diagnosis; it means the doctors don't know what it is and they tell you that to keep you happy. She's probably not as sick as she claims to be. And so on. But this girl stands up for me, she calls these friends of hers out, and she shares what she's learned from me and from her own research and she shuts those kids the hell up! And it melts my heart with gratitude and something more, every time. It reaffirms my value as a person, as a friend, and her trust in me and the self that I present to the world. In short, her bringing awareness to others on my behalf validates me entirely, and our friendship to boot. It totally almost makes me cry every time I hear about it.

Personally, I think that's how awareness spreads the best-- through the personal connections. I am not going to stop sharing the hell out of articles and pictures and blog posts on Facebook, but it's the personal connection I have with my friends that makes them want to read the articles, to learn more, and to pass on the information to others when they hear ill-informed opinions being bandied about. Truthfully… I'm super humbled by the friends that have stepped forward to be by my side for this lifelong fight I'm enlisted in. There's no way, absolutely no friggin' way, that I could do this well in isolation.

With that in mind, happy National Invisible Illness Awareness Week! May our friendships and relationships be sturdy and true, and may they lead to greater awareness in others… and within ourselves.

So I pretty much had the craziest Monday of my life. It was long, involved, looooong, and there was a great deal of pain present, not just mine. Here's what went down…

I had an appointment scheduled with a pain clinic for 8:30 am on Monday. I couldn't get anyone else to drive me, so M left the ren faire she was working early Sunday evening to crash on our couch and drive me up early Monday morning.

3:30 am-- We hit the road in C's truck. M is driving while I am filling out the 27 pages of New Patient paperwork I printed out the night before. (I never got a packet in the mail.) A few hours later, I doze intermittently while M keeps driving.

6:30 am-- I snap awake in time to scream as M slams on the brakes and hits the car in front of us. Traffic just kind of… stopped… but we didn't. At least, not in time. The car in front of us was pushed into the car in front of them, and was totaled. The car at the far front just had a little bit of a smashed bumper, and they were able to drive away. M was injured in the accident with soft tissue damage to her wrist and ankle but refused treatment because she had to get me to my pain doc appointment. She helped me to mix up my emergency steroid shot and I stabbed myself in the leg for the injection, to avoid going into adrenal shock. An hour and a half of procedures and such later, I took over driving the now snub-nosed truck and we made it to the pain clinic with 15 minutes to spare.

8:15 am-- The secretary has no record of me in their system, and insists that I have no appointment with them. I am devastated, baffled, and slightly upset as they were the ones that called me to set up the appointment. We go outside and I proceed to fall apart emotionally. It's now been about 12 hours since my last pain killer (which was only 1/2 of one since I had been on half-doses that week, trying to make them stretch), and I have no option for getting more. M has an idea, and we pull up the phone number of the pain clinic that the neuros initially referred me to but had turned me away, and sure enough… I took us to the wrong place. It's now time for my appointment, and we're 1.5 hours away. They agree to try to fit me in at some point in the day, and we jump in the truck and book it over there. (In my defense, I have been drugged up on sleeping pills the past week and a half-ish, and the difference between Arizona Pain Institute and Arizona Pain Specialists really isn't that great. I think my confusion is justifiable.)

12:30 pm-- I'm now laying on the floor of the pain clinic, since I can't handle being upright any longer. They take me back to a room so I can lay on a bed thingy at least while I wait for the doctor, and I finally break down into tears from the pain. The nurse comes in, takes my vitals and information, and not too long after the doc comes in. It was a good appointment, and he takes me seriously. He is really happy to hear what rheum I am seeing and says that he's one of the best. He feels that there is something systemic, possibly autoimmune, that is causing the scope and severity of my pain beyond just fibro. (Finally, a doctor that agrees with me!!!) He prescribes me my regular pain killers along with aqua therapy, but I have to pass a urine test before I get my prescription. Makes sense. I make it to the bathroom before throwing up from pain, but then realize that they gave me the sample cup for some other woman. They bring the the right cup, I make it to the bathroom before throwing up (again), and pass my urine test. Sign a contract for responsible usage, get my script, and hit the road in search of a pharmacy.

???? pm-- The CVS down the street doesn't have the meds I need, but they suggest the Walgreens across the street. We get over there, they have the meds, but it'll be like, 30 minutes. While we wait, we fill up the gas tank and hit the Starbuck's for some tea (me) and coffee (M). Keep in mind that M is damaged this whole time, and is getting increasingly stiffer and sorer from the accident. She's still driving me around like a champ, though, limping along beside me and my walker, and even pushing me once or twice. I can barely walk at this point, and my pain has been at a 9+ for hours. I've only cried a little since leaving the doctor's office, but it's getting harder and harder to handle my pain.

As M is getting in the truck after pumping gas, we're approached by some white guy who claims that he's a Marine and served _____ places for ______ months and has $1600 in a bank account, but the bank doesn't have any branches around here and he's going to get it transferred to his wife's Wells Fargo account tomorrow but he doesn't have any money today and he needs to get gas in his car so he can go pick up his four year old daughter from daycare and they charge $20 for every 30 minutes you're late and can we spare some money to help him and he'll even give us his driver's license to hold until he pays us back? I say no, M says no, and he begins to protest. We tell him we don't live here, we're leaving in a few minutes, and he asks if we have an address he can send it to? I'm just like, "Nah, bro. We can't help you. No." He gives up and goes away, and M and I talk about all the inconsistencies in his story, which are many. I knew he was trying to scam us right away when he began swamping jus with unnecessary details. That's a pretty sure indicator that someone is lying to you, trying to convince you of the "truth" of their story.

We make it back to Walgreens and get my pills, which were cheaper than I expected. (Hallelujah!) As we are walking/limping/shuffling away from the pharmacy counter, I suddenly felt very faint and knew that I was going to pass out. I said so to M, "I'm gonna pass out," and knelt down with my head resting on the walker seat. After that, it's kinda fuzzy. I guess I slumped over and ended up on the floor with my face super pale followed by flushing, and was more or less unresponsive. (I remember bits and pieces, but most of this is what M told me and I just kind of gut feel that it's right.) A lady who was standing in the aisle came over and helped M get my sweater partially off so that I could cool down because I was very warm and sweating, and they took the pillow off of my walker seat and put it under my head. The lady in the white sweater held my hands and massaged them to get the oxygen back into them (my hands and face were numb, and I was hyperventilating some I guess) while M pulled my purse off of me. The male pharmacist came over and was also holding my hands (how many hands did I have?!), and another female employee was there as well, I think. Everyone was patronizing me, telling me what a good job I was doing and to keep breathing steadily, deep breaths, in through my nose and out through my mouth. They told me to squeeze their hands if I needed to, as hard as I needed, and as I was writhing on the floor they kept telling me to lay however was comfortable for me. The pharmacist told me to go to my happy place and I laughed. He said that his happy place would be under a race car, scraping off mud. I laughed again and told him that sounded like a crappy happy place. He said something about how he loves to race, anything involving that would be his happy place.

By this time, someone had called 911 and blocked off the aisle so that no curious onlookers could crowd around. (I never opened my eyes through all of this, so I don't know what anyone or anything looked like.) At some point, M tells me that I started screaming. Loudly. I hurt, okay? I know that I broke down and started crying, but apparently I was screaming/wailing very loudly while doing so. I don't recall that. I did wave my medic alert bracelet at them at one point, and they were questioning M as to whether or not we were together. She said, "Yes, we're together. She's one of my best friends!" (That's heartwarming to me ^_^) I somehow told them that the meds in the database for my bracelet weren't entirely up to date (they are changing so much and so rapidly lately!), so M went out to the truck for my big binder of medical info. I am so glad I have that thing!! I think the EMTs were there by the time she got back, but they wouldn't talk to her about what was going on. They wanted to hear it from me, probably to know that I wasn't delirious or anything.

I started getting my breath back and becoming more aware of my surroundings when the EMTs were working on me, so I was able to answer their questions. One of them asked me if I had any medical conditions, and I laughed at him. Then he asked me what medications I was on and I laughed at him again. I mean, I told him, but I laughed first. They got me sitting up, and then standing, and it was decided that I would just take a pain killer and try to make it back to our town. Since my case is so complex, with so many overlapping conditions, there really wasn't much they could do for me besides take me in to the hospital which I did NOT want to do. (We're kinda tight on funds right now, with all this traveling to the big city for my appointments, and ambulance rides and hospital visits are expensive. Not to mention the fact that we wrecked the truck that morning, too…) The EMT guy was like, "We can take you in, but you know your body and we don't. Do you think you'll be okay with just taking a pain killer? Is that what you think you need?" M and I agreed that it probably was, so I got them to push me out to the truck on my walker so M wouldn't have to, since I didn't really want to try my luck walking again. Somehow I ended up with a bottle of water that I drank, but it had no lid.

When the ambulance was at the crash scene that morning, I had insisted that M go with them to get checked out since she was obviously in a great deal of pain. She was so emphatic that she had to stay with me to get me to my appointment, and she was so cocky about how it was a good thing that she didn't go with them that morning or else I would have been dealing with all of that by myself and obviously I needed her. Yeah, yeah, yeah… lol. When the EMTs showed up, I waved vaguely in the direction of M's voice and said, "You're supposed to be the one going with the ambulance, f***er!" (I have found that swearing makes me feel better, but I think I should cut down on the habit since I have been doing it some very inappropriate places lately… such as when my mental capacity is diminished and/or I'm in a great deal of pain. Last time I got a steroid and pain killer shot at my doctor's office, I dropped a very loud f-bomb because it hurt SO. BAD. I thought it was in my head, but C was laughing at me and informed me that it was, well, out loud. Oops.)

The EMTs asked me what my pain level was at once they got me standing, and I immediately answered, "10. Wait, no… 9.5. I'm saving my 10." That day without meds was definitely the most pain I've gone through yet with this whatever-the-heck-disease-this-is. Every time I have to go without pain meds, it's worse. Now though, I've got consistent, established care with a pain doc and I won't have to worry about trying to scramble for meds. Well, I won't have to worry if I stick to the regimen of 4 a day. I know now that I can handle extreme amounts of pain, especially if I have sleeping pills on hand. I just know that I can't expect to have much of a social, professional, or personal life for a while yet. Not on only 4 pain killers a day. I'm not working anymore (which is also contributing to our financial crunch), so that pressure is off a little… I can pretty much just stay in bed. Not that I want to, but I gotta lower my expectations so that I can actually mentally make it through on 4 pills a day, without such a strong temptation to take more. I rationed out the correct amount of pills into my pill organizer and gave the big bottle of pills to C to hide. I told him that I'll come to him on refill day and ask for it back, then when I've refilled for the week I'll give it back to him to hide away again. Seeing the small amount of pills I have for every day will help me be less free with my consumption, because when I have the big bottle I'm digging my pills out of it's easy to think, "Oh I have plenty left… It won't hurt to take one extra right now, 'cause I'm really hurting…" Well, I have to realize that I'm pretty much always "really hurting" now, and I can't escape that.

Anyway, we got me packed into the truck and M drove us back home. The closer we got, the more pain she was in, so I stayed awake to chat with her and distract her from her pain (and mine). At my insistence, we met her mom at the ER as soon as we got into town and I left M with her. Guy M literally ran over to the hospital from his girlfriend's house (his ride fell through) and he drove me home in C's truck. He also spent the evening with me until C got home, which was nice. M finally got out of the ER at about 3 this morning (we got her checked in at the front desk about 7:30 pm), but fortunately she's only banged and bruised up. She was having chest pains even before we began our trip and could hardly eat or drink a thing the whole time, but that was determined to be an esophageal issue, and she will be following up with her primary care for that. (She had me worried! I was like, heart problems? Noooo!) The officer at the scene of the crash was talking to M and I just before we left the scene, and after I told him that I had wanted M to go get checked out he looked at me and said, "Why is she driving if you're not in any pain?" I was like, "Ohhhh, I'm in pain! I'm always in pain." It was funny. There were so many funny moments scattered throughout the craziness of the day, but the moral of the whole story is that M is a badass and an amazingly loyal caretaker and friend. We've decided that in the interest of simplicity, we're simply going to identify as sisters from here on out. It's just easier that way.

C took the news of his crushed truck surprisingly well, but he's definitely distressed about it. He had been planning to pay off a significant portion of the loan on it with his tax return, and also to put a chunk of money towards a new car for me since mine is set to crap out on us at any time. (It makes him nervous to be driving my car around, since he's afraid that it'll break down on him on the way to work.) Instead, he'll be paying the insurance deductible to get the truck fixed, as it's leaking oil in addition to the body work it needs. I'm really glad that it got us through all the running around we needed to do. We also have had to give up on the idea of the Celebirthsary that we were hoping to do, but I'm not as devastated as I might be since that was a tenuous hope at best to begin with. He wasn't sure we'd have the funds for it even before this happened. Guy M said something about how M was distraught over the idea of us not being able to have our Celebirthsary and how they were going to make it happen or some such, but I don't know if C will accept that. He has a proud streak… but I'm not above accepting charity! LOL. I'm just happy we got to go to one ren faire, even if it wasn't my favorite one. I knew that even if we got up there we wouldn't be able to do a nice dinner or go to the adult toy store like I wanted, but we'd at least have a decent hotel room and a day at the faire. But maybe I can put together a stay-cation for us here? Something, at least. I mean, our first wedding anniversary… it's kind of a big deal. Plus you've got our birthdays on either side of it, hence the Celebirthsary.

Oh, for those of you who haven't seen it, this video is the origin of the term "Celebirthsary". It's hilarious because C and I are so much like that couple. I mean, I don't go to trick C, but I love to celebrate anything, whereas C doesn't celebrate anything if he doesn't have to. The man doesn't even want a Valentine's card. He told me not to get him a card for anything, every, any occasion. Hah. Like I'm going to follow that rule!

So yeah. There you have it. My longest, craziest Monday ever. I'm still recovering from it (pretty much haven't budged from the couch), and I almost passed out again this morning, but I laid down in time and got it under control. I ordered myself a small pizza this afternoon and ate the whole thing by myself in one sitting. It was delicious and I totally savored it… until I started throwing it up several hours later. M said he totally knew that was going to happen. I guess I need to stop eating pizza. This is the 3rd one inside of 2 weeks… and I'm allergic to a lot of the stuff that makes it up. If I want to be kind to my body, I'll knock it off. But oh… I want to be kind to my taste buds, too! I figured I deserved an indulgence after a day like that… but maybe next time I'll indulge in something else. Like cheesecake. Except I don't know of any place that delivers cheesecake...

So I'm going through my blog, looking for landmarks of my health problems and decline to take to my appointment tomorrow, and I came across the post where that pastor told me I'd be unhappy and divorcing within a year. Remember that? Well, I realized that I totally let the "deadline" for going back  and showing the pastor just how miserable I am in my marriage pass without going to troll him. I regret this, and I think C will agree with me that we need to rectify this situation.

After all, he should be able to see just how accurate and wise his predictions were, founded as they are on years and years of anecdotal evidence and his unfathomable insight into the word of God. Oh, wait… he wasn't right? C and I are actually happy, secure, and content within our marriage and, what's that, even stronger because of the trials and challenges we've faced in this first year of marriage? Well, how about that.

Pardon my sarcasm, but it's just that I completely called it. And considering the formidable challenges we've faced just within this first year of marriage alone, it's even more notable that our relationship is strong and thriving. Chronic illness (or any traumatic and stressful event) can either strengthen the relationship or break it apart. It depends on the people within the relationship.

We're freaking champions.

I'm back, baby!

I knew I'd come out of my depression funk eventually... it took a week, but I'm on the upswing.

I just need to manage myself carefully, because it's so easy to work myself into a frenzied lather of energy and motion and manic happiness after being down. It's just so delicious being happy, and caring about stuff, and having the energy to do some things! Very, very easy to go overboard.

And so, today I forewent my walk. (Forewent is the past tense of forego, yeah?) I want it, because I enjoy it, but I recognize that today was such a busy day, with so much running around and cleaning and work and stuff, that I would be overdoing it by taking the walk... no matter how enjoyable walking is for me.

I see this as maintaining those physical boundaries. "Today, I will go this far, and no further." (Did I mention that I'm proud of myself? Go me!) Life is busy right now, and I need to be wise. I somehow passed that big test with flying colors, despite freaking out about not grasping the material, and being too apathetic and unfocused to study really well. (I got over 100%. Really? Really?!) I've still got a lot of school work to do (we're learning slope and average rates of change and stuff in algebra now), on top of the HJ, but those are constants. Fluctuating constants, true... I've got a couple of odd jobs this week and the next, and I'm still trying to nail down wedding stuff. Then there's this holiday stuff, like the zombie haunted house. A group of us are going to see S's big play this weekend, and I'm celebrating my Anniversary of Life this weekend with BJ and F.

Oh, yeah-- Happy Anniversary!!

That was an Astrovan at one point in time.

I'm so happy to be alive. And to have my vision back. And that everyone else survived, too, despite the odds! Six years... I can hardly believe it.

Here's to Life.

More importantly, here's to a Balanced Life.

Cheers.