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.)

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!

I had my first class today.

Welcome, new semester!

More specifically, I had my first yoga class today.

I was dubious about my ability to really participate today, as last night was a rough night. I went to bed a few hours earlier than normal (or what's become my normal, heh), but I didn't end up falling asleep until just after my normal bedtime due to pain. I finally broke down and took the one painkiller mom gave me from her stash the hospital gave her, but I didn't feel that it did anything... except maybe knock me out for a while? After 3 hours I was awake again, needing to eat and still in pain. I took care of that and was able to fall back asleep, but by the time I had to crawl out of bed to get to class on time I was still sooooo tired! And in pain. All over.

So, as you see, I was dubious. To say the least.

However, the teacher advocates an interesting philosophy, one that had me going, "Aha! I knew I was meant to be here!" It was like a message from God/the universe/my dead auntie/whatever. (I don't think I actually have a dead auntie, come to think of it...)

She emphasized "honoring your practice". What does that mean? Well, she explained during various parts of the session that every day is different-- our balance will be different, our energy levels, our mental state, etc. We need to acknowledge where we are that day, accept it, and work within those limits. Can I hold a position a certain day but not another? That's okay. I need to listen to my body and honor what it is saying to me, to find the balance that is right for me, no matter what anyone else in the class is doing. If the teacher takes us from a forward fold to a floor sit but I feel that I need to hold the fold for a few more seconds, then I need to hold the fold for a few more seconds. If we're sitting in a certain pose but my body is saying "No way!", then I need to adjust and find a way to honor my practice.

It is precisely that type of theory that I am trying to put into practice in my every day life. For me, every day is different in so many aspects-- pain levels, energy levels, nausea levels, emotional state, things to accomplish... Every day has its own balance. I need to honor my practice and find the balance within each and every day, within every moment. It doesn't matter what anyone else is doing or saying. I need to find my balance and honor what I am telling myself. I need to trust myself.

This dovetails perfectly with what I was learning in my last round of counseling about unreasonable expectations and being kind to myself.

I'm really glad that I chose to take this class. Did it hurt? Heck yes! I tried not to push myself too hard, but I was pleasantly surprised to see that I was able to keep up. My physical sense of balance is better than I thought it was, which was gratifying.

I am looking forward to continuing to learn and apply this practice of honoring my practice, both in and out of class.

(One problem, though... despite the pain, I'm so relaxed after class that it's hard to function! lol A good problem to have, I suppose...)