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!

A fellow blogger shared this song on a recent post, and the lyrics really, really spoke to me. Not to mention the fact that the girl's voice is absolutely lovely, and the style is so chill and embraceable. (Also, she's so… "normal" looking, but still so attractive! That really speaks to me, as well as seeing that she is "large" but still beautiful. That comforts me as I struggle with body image as I get bigger.)

Who wants to get a bunch of balloons to hand out to strangers and make them smile with me? That looks like a really, really amazing thing to do. I'd like to tie affirmations to each balloon. I think that things fall into place just as they need to, and I bet that those affirmations will be just what needed to come into the life of whoever gets them.

Out on the open highway
Out in the open air
See the world move beneath me
Leaving without a care
I know just where I came from
But I don't know where I'll end
Only thing that I'm sure of
I'd do it all again

I found a boy I could love
Maybe I found a few
Even with best intention
They never followed through
If he could take my heart now
He'd put right in her chest
Thinking he'd have a girl
He finally could love best

And I'm gonna be fine, fine, fine
I'm gonna be brilliant

CHORUS:
This year is gonna be better and you're gonna see
This year I'm gonna be stronger and a braver me
This year and I'm gonna make it 'cause I said I would
Do all the things you said I never could

This year x2

I may not be perfection
But I never claimed to be
Maybe if I was thin or beautiful classically
Of all of the things I carry
And all of the things I know
I know that I will be loved
No matter where I go

And I'm gonna be fine, fine, fine
I'm just gonna be different

CHORUS

This year x2

Maybe you're the kind who needs lights falling down
Maybe you're the kind who needs stars racing to the ground
Just to feel the things you wish for are coming true

Sometimes it's hard to get up
Maybe it's hard to speak
You think no one understands you
Feel like nobody sees
When the night's dark around you
With all of the things you've lost
Know that the hope inside you
Sometimes is worth the cost

And we're gonna be fine, fine, fine
'Cause we'll be together

CHORUS x2

This year (I'm gonna make it, gonna make my way back to you) x2

I've been turning this around and around in my head and heart for the past few days, and I need to just get it out on "paper" so I can think through it... or at least feel it less... or maybe feel it fully. I dunno.

Saturday night, my youngest (bio) sister J called me in tears. She said that she was breaking down and that she couldn't stop crying and she didn't know who to call 'cause Mom wasn't answering her phone so she called me. I was honored, but concerned. As it turns out, she was having a PTSD flashback attack, being assaulted by memories that she had previously been repressing, and she didn't know how to deal with it or how to stop the memories. I talked with her through it and managed to get her calmed down, and we talked for about 2 hours. She didn't want to talk specifics at all, which I totally understand, but she said that she had memories of bad things happening to her. I guess that I just couldn't absorb what she was telling me, so I assumed she was talking about physical abuse and went with that for the rest of the conversation.

R called me in a panic an hour or two later (well, as panicked as he gets, anyway) saying that J had texted him in the course of a text convo they were having that the same thing that happened to me had happened to her. After our conversation and my piecing together the big picture from context clues in our conversation, I fb messaged her and asked outright, "Those memories that are troubling you... are they sexual in nature?" She responded that they were.

Dear god.

Here's the kicker... we share the same molester.

He's her father. Her biological father. I mean, how sick is that?! One thing that I've clung to all these years is that, "Well, at least he was only my step dad." 

She's been disclosing to family members and calling people involved the past few days... trying to make sense of the whole thing, I think, and also to validate her memories. She doesn't trust herself fully, so she needs someone to confirm that she was, in fact, abused and that she's not making it up. We've been in close contact since that night, whether it be through phone call, text, or Facebook chat. I am so glad that I followed the impulse I had recently to reach out to her and establish a deeper bond and to make myself available to her via regular phone calls. When she needed a support and someone to turn to, she had someone who was there for her.

Although I hate the situation with a passion, it did help to boost my professional confidence that I handled her crisis so well. I had no idea that I knew so much! I'm pretty much terrified of dealing with my girls when they're in crisis mode, and I have avoided giving out my phone number for that very reason. Besides my own trepidation, fear of somehow bungling it and damaging them further, and feelings of inadequacy, I know that it takes a lot of energy to deal with someone in an emotional crisis and I don't always have anything to give. I am selfish, I'll admit it. When I'm home, I don't want to be bothered with someone else's problems most of the time. Now, though... my perspective has changed. I realize how much I know, that I can help someone through a crisis... and I feel like my heart has been opened towards my girls a little more now. I have more love for them. It's hard to explain. But I'll be handing out my card with my phone number on it tonight to all of the girls, and I started a Facebook group last week just for them. I'm glad that I am involved in the teen/tween group again. It's not like it was last time when I was drowning, untrained and casting about on my own while battling my own demons without any weapons. I'm in a much stronger place emotionally, the turmoil of my romantic life has died down, and I've gotten some good counseling and experience under my belt. I've also gone through the program myself for a while, and that was worth more than anything in terms of training and learning.

So back to J. R called me while I was traveling the other day, and we urgently hammered out some of the details for me to fly back and be there with the folks for a few weeks next month. Mom will be having a hysterectomy and will be physically out of commission for a while and J needs a good support system more than ever right now. (She was hospitalized for suicidal ideations again last week.) She and I have really, really clicked and connected, and being a survivor of the same kind of abuse from the same abuser puts me in a unique position to minister to her. She sees that my life is good, that I have not only survived but thrived (HJ mission statement plug, lol), and I think that will give her hope. The beginning is hard, but the healing is even harder, and she's got a lot to work through. K was very abusive to her while they were growing up and it has affected her in dramatic ways. I'm trying to convince her to move here to Y with me for a year or two at the least after she graduates high school this year. I think that going through the HJ program with girls her age that are also wonderful, strong, empathetic survivors would hep her avoid a lot of heartache, pain, and dysfunction in the future.

Those are the facts. But the feelings? I guess I'm just numb still. I'm shocked, disgusted, sorrowful... but it's all kind of muted, far-off, tamped down. It'll probably be really intense while I'm there with her. I had restless sleep last night and woke up feeling all gross inside and I know it's because of this. I guess I've just written G off to such a degree that I can't feel anything about him right now, not yet. But I guess the biggest thing I feel is relief. I am relieved that I can do what I've been doing my whole life and rush in to take care of my family and help make things better, make them run smoother. I don't feel so helpless because I was there for J in her hour of need, I had the experience and training necessary to help her through the critical juncture, and I'll be there physically to be a support for her. I'll be there physically to help take care of my family's physical needs while Mom is out of commission (and even while she's not-- I've had reports that she's overwhelmed right now and not doing so well). I can do something, I already have, and that relief trumps everything else. I can't fix it; I know that. But I can help set the bone and make sure the fracture heals clean while the healing takes place.

I guess that I just never thought he would hurt his own kids, you know? Me, obviously. K, maybe. But his kids? They were obviously his favorites. I can't believe that even after all he did to me I still accorded him some measure of decency. Guess I was wrong. I would do a lot of things to make sure he never sees the light of day again... not for me, but for my baby girl, my sweet little sister. God. I can't even assimilate this. How could he? I don't have english words strong enough for my sense of outrage and repulsion. He is her father. I just... I just... I don't know. My heart is broken and inflamed all at once. My baby... he hurt my baby.

When it was just about me, it was excusable. (I know, I know, logic says it's not, but this is what the inner voices say, ok? I'm working on it. Give me a break.) I took the hit so the other kids would be safe. I took care of them, you know? But then when we were all taken away, when they were out of my care, he hurt her. He did bad things to her. There's nothing I could have done to stop it; I know that. But I spent all of these years believing that I had somehow saved the rest of them... that I had done my job as Second Mommy and taken care of my family to the best of my ability. But now I realize that I never could. I was just a kid, and he was a sick adult bent on draining the life and livelihood of those around him for his own selfish purposes. He never cared about us. It was always about him, only about him. This is proof.

There is no "I should have been there", because there is no way I could have been. The situation was out of my hands. I was too busy trying to take care of K and myself, and then Mom when we got back to her. The kids were with their Gramma and Grampa, so of course they were safe! They were taken care of. I didn't have to worry. Because, I mean, of course he singled me out... I was the oldest. The blonde one. The one that looked different. They were his. He doted on them. He'd take care of them, even if he despised K and I.

I was wrong.

But I can take care of her now. I can help. I can't change what happened, but I can change what happens from here on out... and I'm going to take care of my baby.

Hell hath no fury like that of a woman whose loved ones have been hurt.

Laid a little low with the fibro flu today. Low fever, enough nausea to be annoying and make me feel generally gross, and a lovely little headache flitting about my cranium... plus the usual back spasms, chest pain, and gut twisting. I'm glad I don't have to go anywhere today!

 I saw a great idea on fb via Chronically Creative (I think. Can't remember. Blame it on the fog.), and that was to create a pretty "slide" listing my accomplishments for the week. It's so easy to look back at my day, or my week, and think to myself, "What did I accomplish? Did I do anything? No. I didn't. What a waste." And that, of course, is negative self-talk, which exacerbates any depression that may be lurking over my shoulder. (Depression is like a Gremlin, you know... except you shouldn't feed it ever. And don't get it wet. Though I'm not sure how that would even apply in a metaphorical sense.)

So I'm setting a goal for myself, to help keep myself accountable in speaking love and affirmation to myself, rather than criticism. I've let that slide a lot lately... it just takes so much energy to be kind to yourself when it's not familiar, and the negative, snarky, demeaning things seem so much more true when you're compromised in the way that my illnesses have compromised me.

My goal is this: every day, I will enter my accomplishments into the slide format, and when a week has been completed, I will share that picture on this blog. No matter how big or little the accomplishments, I will show myself with undeniable proof that I am not worthless, useless, or a vegetable. I am a fighter, dammit, and I fight every day. I win victories every day. It's time I started to recognize that!

The world shall tremble before the might and tenacity of the Fibro Princess Warrior, the Chick with a Stick! (Well, my internal world, that is. ^_^)

Warning: This post may be considered by some to be a downer, because I'm going to talk very candidly about life with a chronic illness that can cause high levels of pain and frustration. Do not, however, assume that I am down, because I'm not! Though I may have my moments, my hours, my days, or even my string of days when I'm just burnt out and tired of this whole shebang, overall it's something I'm coming to terms with and try to view as an opportunity for growth.

So. That being said...

The last few days were hard. I mean, really hard. And by really hard, I mean really really really really ridiculously difficult. I thought that I was being accurate before when I said I was "destroyed"... but I didn't know the meaning of destroyed. (Hopefully I won't have to learn new depths of that word!)

First of all, I've had a lot going on these past few weeks-- first the colonoscopy, which pretty much devastated me, mucho wedding prep (and I still haven't sat down with my fear of getting married and begun to really process through it in any meaningful way); long, stressful travel hours; the few days with D, coming to grips with his impending death and saying goodbye; the shock and disappointment of much-anticipated guests not being able to come to the wedding; more long, stressful travel hours; dealing with an increase in symptoms and pain levels and trying to cope with that... and then I ran out of pain meds.

I'm so grateful that I asked for painkillers and that my doctor prescribed me something without hesitation. Let's put it this way-- this morning I took 3 ibuprofen and never felt a thing. NSAIDS barely even put a major dent in my menstrual cramps, let alone this kind of pain.

I ran out of painkillers on the day I traveled back home. I was already hurting quite a bit when I went to bed, but the next day it had just increased. Today was even worse, especially because it's not just pain but nausea and balance problems and sleep problems and total brain fog and gut pain upon eating (whenever I can even get around to eating)... It sucks. As I thought back on it while submerged in my hot bath earlier, I came to the conclusion that if I didn't have these pain meds that actually worked, I would so not be willing to live life the way that I have the past few days. I am not joking. I could not do that long-term. I would literally seriously consider suicide if I had to do those pain levels and all the other stuff for an extended period of time.

See, the thing is that it wasn't just one kind of pain; it's a pain that has layers. The bottom layer is a generalized ache, like the kind you get when you have a bad fever. Everything hurts, whether you're moving or laying still, and your skin is super tender and it hurts to even have clothes pressing against your skin. Your scalp hurts, and even your teeth hurt. To have water splash your skin is a violent, painful shock, no matter the temperature. The weird part was that I had no fever at all, despite my obsessive checking. The next layer of pain is muscle pain; the general ache that flares into a protesting groan when you move anything, or roll over, or lay in one position too long, or have any sort of pressure anywhere on your body. The top layer is joint pain; the sharp, throbbing whine of the hip sockets, the lower-pitched but just as insistent flames that consume the knees, the delicate ripples of spasming electricity that lace their way through wrists, fingers, and ankles... and then there's the booming resonance that blasts its way through mid-back, all the way through to the solar plexus on the other side and wrapping around the ribs, reaching both upward and down in an attempt to consume the entire torso... And did I mention the chills? Freezing, yet sweating at the same time. I couldn't get warm, but I could barely stand to be wrapped up.

I know that everyone's personal pain tolerance is at different levels. For someone else, this may be totally bearable. For me, however, it was totally incapacitating. I have two pain scales-- one for uncommon events, such as car crashes and broken limbs and such, and another for every-day pain. On my "every day" pain scale, I was at about a 5.5 - 6.5 on my traveling day, then it went up to 7 - 8 the next day, and today was a solid 9 most of the day. I can't say 10, because the pain I was in after the colonoscopy had me literally sobbing and helpless, but it was definitely up there, especially with the multi-facted nature of the discomfort. You can see now why I was hounding my doctor's office and the pharmacy today. I think that if I had no prospect of relief, I would have just sucked it up and tried to find methods to cope... but knowing that there is something that can scale the pain back, well... It nearly drove me insane. I was so frustrated. But now that I've got some of that in my system, I'm back down to a 4-ish. That I can deal with. Anything 5 or below, I can pretty much function normally. Once you get above that, it's hard for me to concentrate on daily life or make myself carry on.

So I basically just laid in bed the past two days, except to go grocery shopping and go to school (with errands in between my classes). Now, though, I'm starting to feel like a human again! I have emotions! I have a whole range of facial expressions! I'm still limping, but I can move faster than a gimpy snail!

It is frustrating to realize that I've gone downhill so far... I had a couple of people bring it up to me while I was up north, and I was forced to face the reality of how far I've fallen, so to speak. It was discouraging, to be quite honest. But really? I'm trying my absolute best to be as healthy as I can and to take the measures necessary to boost my health back up. What else can I do? If I never get any better, it won't be for lack of trying, that's for sure!

I've noticed a pattern. It's not like I've just had this gradual slide down a hill, it's more like a set of stairs. I'll level out for a while, then something will drop me down, then I'll level out, then I'll drop again...

But C and I have talked about how to try to get me boosted back up, and he instituted the "one thing a day" rule the other day. For now, I am allowed to do one "thing" a day. Whether it's cleaning the kitchen or unpacking my suitcases or running errands, I must choose. I only get one. (I really only have the spoons for one.) As I get better, I can add things one at a time, but for now I get one. This is where the "Fiance" part of the title comes in. He is so good to me... not just in dealing with the baggage that I have from my past, but in dealing with this sickness. He helps me to see things logically and smoothly, rather than getting worked up (or worn down) by emotions. He also takes care of me in the physical sense, working with my food allergies, making sure I've taken my meds on time (because I sometimes forget), being considerate of my limitations... just generally being awesome and not minding all my setbacks. He is the one that bought me the Bling Chariot, after all, which is one of the best investments I've seen in a while. I use that thing all the time (sad to say).

That brings me to the Fears section. Sometimes I feel like I'm never gonna get any better, like I'm just going to keep taking those stairs downward until I'm a quivering heap under the bedclothes. Then I work myself back into encouragement through various means, but... the fear is still there, in the back of my head. Today before class I was chatting with a lady whose sister has fibro. It manifested when she was 20 as a result of a back injury sustained at work, and 15 years of fighting later, she's basically bedridden, in extreme pain. Again, it's not for lack of trying that she ended up this way... and that scares me. Because, really, it's like no matter how hard I try I'm just not gaining any headway against this monster that's taken over my life. It's so dumb! I'm so sick of being sick! I don't want to be a frail wreck, but if I step back and take a look at the reality of my situation... I am kinda frail. I am physically weak in many ways. I don't say this to admit defeat, but for the sake of a reality check. While it's important to be positive and to set good intentions and all that, it doesn't help anyone to live in denial and refuse to see the truth of the matter.

So, okay. Yeah. I am sick. Very sick, in fact. And it doesn't seem like my efforts are preventing the downward slippage much, if at all.

But C and I talked about what would happen if I did end up bedridden like my friend's sister. What would happen if I just kept spiraling downward?

Well... if it happens, it happens. Obviously, there isn't much we can do about it, so why worry?

That was C's response. I mean, I'm doing all I can, sooooo... if it happens, then it happens.

He doesn't believe in worrying about things you have no control over.

And you know what? I'm coming around to his point of view.

As things stand now, I'm a sick girl. Pretty darn sick, in fact. But, but, but, I am also a fighter, and I'm going to do my damndest to get better again. If it doesn't happen, then I'll have to deal with that. But again, it sure won't be for lack of trying! I really can't predict the future... but I know beyond a shadow of a doubt that I have a heck of a lot of wonderful people in my corner, cheering me on and praying me forward, and I also have a pretty amazing guy holding my hand and wiping my brow (and tears!) as I fight this battle for my future and my sanity.

As I said, while this can be seen as a downer, I see it as... I dunno. Something else. Reality, maybe? Dashed with a little spicy optimism? I believe in God, and I believe in miracles. I don't know if he'll give me one, but I do think that there are a lot of things we can consider miracles, if we just look at them in the right light. This healthy relationship, for one... that, to me, is a miracle. My amazingly supportive friends and family. A painkiller that helps me feel like a real person again. A job that I love and a boss that totally understands my health struggles and works with me. A dad willing to foot my medical bills so I can figure all this out and move forward. (And he's also the one paying for my prescriptions, which includes the miracle pain killer. You're my savior, if indirectly, R!)

My life is filled with good things. Sure, it's filled with challenges, but whose life isn't? Maybe mine are just different from someone else's.

I choose to view this framed in positivity, even if I do get frustrated sometimes, or worn down and worn out from the pain. Yeah, I do want to give up more frequently than I'd like to admit. But really? I know it's all gonna be okay, one way or another. Really, it will.

(Now please, remind me of this mindset the next time I'm flipping out, yeah?)

I've been doing some thinking today.

Clearly. (Today is a prolific post day, it seems.)

Today was a tough fibro day, especially pain and mobility-wise. It got me to thinking about my long-term strategies for living with my new reality. I had spent the last few weeks being miserable with my new meds, yet hoping that they would magically cancel out the fibro symptoms. Alas, I have come across statistics in several places that indicate the meds will only help about 50% of fibro peeps with about a 40% diminishing of symptoms.

Basically? It's here to stay. Like my food allergies. Like my hypothyroid. Like my trashed adrenals.

This is my new life. Welcome to it.

But I've also been thinking... I don't want it to be a dismal thing.

I mean, sure... I could focus on the pain, on the limitations, on what's been taken away from me... and I may, from time to time. I won't lie. Sometimes I want to just sit down and cry.

However.

I have a friend who is going through cancer treatments. It started off as breast cancer, metastasized to her liver and brain, and recently showed up on her brain again. She has become The Chemo Princess, and wears a tiara and carries a magic wand with her to every treatment and doctor's appointment. She lets her personality and her joy for life just shine through, and she totally rocks that cancer. (If that makes sense.)

And someone posted this video on her wall, which I watched and came away totally inspired. Like, seriously... it speaks to me in a very deep way. This is my "Fight!" theme song for when I am tempted to curl up in a ball and whimper my way into the night.

I don't have cancer. My illnesses are chronic, but they are not life threatening.

But still, it got me thinking... about how I, too, want to live my life with the joy that I see in those ladies who are fighting for their lives.

In a way, I am fighting for my life, too. Not in the sense that I will die, but in the sense that my dreams, my every day life, my previous way of living... it's all at risk. It's all up in the air.

Will I continue to pursue my dreams, or will I run up against a brick wall and think, "I can't"?

Seriously... I've been wondering lately if I can do this massage thing. It would be so easy to think, "I can't", and give up. But no, I know that I can!

Granted, I have to make adjustments. That's a given. There are things that will be new, scary, uncertain... and there will be things that will be infinitely more difficult than they once were. There are also things that will get easier with time and practice.

But, I mean... I want to live my life with joy and intention. Rather than let this stymie me and stunt me, leaving me a crippled shadow of what I might have been, I want this to be a wake up call to be intentional, to be grateful, and to take advantage of every "good" moment that I have. I want it to teach me to rely on others when I have to, and to be relied on in turn in whatever ways I can.

I know I'll have bad days. Like today. Limping through Wal-mart at half the speed of everyone else... I didn't feel much like smiling. But there were things that did bring a smile to my face. Joy doesn't translate into bliss, I know that. I won't always be in a happy mood. I know that. But I can live a life of joy.

I want to be an inspiration like those ladies are. I want people to spend time around me and come away thinking, "Yeah! I can do _____! It's totally possible! Man, I love life! It's hard sometimes, but I sure do love life." 'Cause that's what I think when I see those ladies and interact with my friend.

I wish I could adequately describe how it feels to have optimism take root inside after feeling little but shock, denial, and disappointment about my new diagnosis until now.

I can still live a good life. It is going to look different than anything I'd ever planned for myself, but I can still live a good life.

I don't believe that God planned this for me. "Plan" denotes that he would intentionally inflict me with these diseases, and I just can't believe that. Allow? Clearly. Prevent? Obviously not. But plan? Don't think so. I would say, rather, that this is being woven into the tapestry of my life. And I can accept that.

I'm planning to buy a rolling, folding walker for my trip back home this Christmas. It'll help me with all the walking I have to do (after hours of sitting--ouch!), and I can use it to help carry my backpack, maybe even as a place to rest if I get one with a seat. I'm going to run the idea past C after Nerd Night wraps up, but I think it would be helpful, even for days like today. I tried using the shopping cart as a walker of sorts, but the metal and plastic digs into my hands/arms and hurts just as badly as walking, maybe more. He didn't like the idea of my borrowing one of the electric scooters they provide, but he can't put his finger on a reason why. He just didn't want to be seen with someone in one of those. (Ouch, a little...) I hope he'll be okay with a walker.

So. Changes. I need to take care of myself better. I need to start eating proper meals, nausea or not. I need to get mild exercise, pain and fatigue or not. I'm trying to branch out and find a support network on the internet of other "fibromites".

I am challenged. I am encouraged. And I am hopeful.

'Cause, I mean... what doesn't kill you makes you stronger! :)

Note: Despite the optimistic overtones of this post, I did shed some tears while having the "I think I need to buy a walker" conversation with C. He casually said, "Well, if you think you need it, go for it." I don't know what I was expecting, but somehow that brought up second-guessing thoughts. "Do I really need it? I mean, can't I just suck it up, and... No! You need to take care of yourself!" 

I believe I'm making the right choice, though it's hard. I did cry, mostly because I never thought that I'd be in a place where I'd even consider buying a walker, much less at 24. I feel a little like a faker, like I couldn't possibly really need something like that because only people who actually have it badly need stuff like that, and it could always be worse, so I will never qualify.

Okay, seriously? I would have been happy to have a walker today. I would have. And yes, that makes me sad. I suppose I'm just grieving... grieving for the life that might have been and has been-- the healthy (hah!), active girl who goes backpacking with her friends... vs. the girl who now needs a walker. I'm afraid to be an embarrassment to C, and even more afraid of being a burden.

I know it's not for every day. But it's still a shock. Sobering. This is real. This is here. This medicine has not cured you. This is a part of your life.

I know not every day will be like today, but it can feel that way when you're hurting. But I know it won't be.

So I'm going to buy that walker, I'm going to wrap it up in neon duct tape (so it will look cool, of course! 'Cause really? If I'm gonna do this, I'm gonna do it right!), and I'm going to smile. I'm going to be grateful for a fiance that stands by me through good days and bad, and who is willing to buy his woman a walker if she needs it... even if she is only 24.