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

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

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

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

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

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

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

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

I began to cry.

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

Soul changer

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

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

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

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

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

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

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

Soul changer

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

Soul changers

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

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

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

Soul changers

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

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

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

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

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

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.

I'll admit it-- sometimes I get really angry at how "easy" other people have it in their lives. I mean, yeah, okay, everyone has their stress and troubles and hard times but some people just seem to have a charmed life, you know? Yes, my incredibly troubled and grueling life is definitely the source of some good points, such as the personal strength, insight, and empathy that I have honed, but sometimes it'd be nice to just have it kinda easy for a while you know? And it hasn't been. My whole life, without exaggeration, has been one fight or another for sustenance, sanity, survival… what's up with that?

And then, just when everything was finally going my way… my health tanks. I was so happy. I was in school, pursuing my dream career, I was planning my wedding, working hard for a cause that I loved with a boss that adored me, I'd paid off my school debt, made huge headway in counseling… I had it made, man. I was good. Things were looking up. But then, then, everything fell apart around me and life is harder than it's ever been. Maybe. Life was really hard during the decade plus of abuse too, though. It's hard to say.

It's just not fair, man. And it pisses me off.

However…

There is good news. I have finally found a doctor that is both willing and able to help me with my pain! I'm diagnosed with "intractable pain" which, according to Wikipedia, is "a severe, constant pain that is not curable by any known means and which causes a bed or house-bound state and early death if not adequately treated, usually with opioids and/or interventional procedures. It is not relieved by ordinary medical, surgical, nursing, or pharmaceutical measures. Unlike the more common chronic pain, it causes adverse biologic affects on the body's cardiovascular, hormone, and neurologic systems." (emphasis mine) Doctors kept getting hung up on "fibromyalgia" and "chronic pain", missing the bigger picture of my pain, but this doctor gets it, and he wants to help me very much. I could cry. It was seriously everything that I had hoped for.

This is the dr's website, Dr. Porcelli. I have to drive 4 hours to get there, but to get my life back? SO worth it.

I was incredibly nervous, because I was afraid that I was just going to get shut down again and I have nowhere else to turn for help but the emergency room, and that is horrendously expensive. (Seriously… I have no idea how I'm going to pay all of the ER bills. *sigh*) He was very cheerful, funny, and engaging right from the get-go, though, and we chatted and joked back and forth the whole time. He looked at my chart and symptom list and was immediately like, "Yes, you definitely suffer from intractable pain! You've got one foot in the grave, huh? Just one banana peel away from packing it in!" (I thought that was funny. This was after he saw the "draw these shapes on this outline of a body to describe what kind of pain you have and where" chart that I filled out. It was pretty well covered in scribbles.) He thinks that with proper pain management I can actually go back to work part time in the future! Also, after a physical examination he discovered that my eyes have been damaged some from the pain, but they will heal when my body calms down.

The plan is to do a long acting opioid with a lower dose one for breakthrough pain. The ones he gave me this month aren't working very well and I'm still spending about 5 or 6 hours a day soaking in the tub, but we can address that at my next appointment. I'm working on getting physical therapy started, trying to do regular massages, and I'm also starting a few supplements (vitamin C, sublingual b12, omega 3 fatty acid, etc.) to boost my general health. I really want to start eating healthier again now that I'm more capable, but really, I'm basically just happy to have meds at all and to know that things are only going to get better from here! I mean, today my friend the Artist came over and helped me clean the house, and I was able to do quite a bit! The house is so tidy now. Ahhhh… we got to things that I've been wanting done for months, or at the very least since I got out of the hospital. It feels good to see my home in order again.

Also, I applied for disability this past Monday, and it was actually a really fun experience thanks to the lady who did my interview. I should get word in about 3 to 6 months, and she says that it's about a 50-50 chance as to whether I'm approved or denied. We'll see. I'm definitely going to appeal if I'm denied, no worries about that.

Oh, and I'm going to make an appointment with a geneticist this next week. Still pursuing further diagnosis, especially since Dr. Porcelli agreed adamantly that while fibro is part of my problem, it is definitely not the entire issue that is causing me to be so sick and in so much pain. So… we shall see. I've got my money on hEDS (Ehlers-Danlos Syndrome, hypermobility type). I fit the criteria so, so, so well, and a large majority of EDSers are either misdiagnosed or not diagnosed at all. The most common misdiagnosis is fibromyalgia, from what I understand.

I'm learning to live with this broken body, even as I try to figure out in what ways exactly it's broken, but it's not easy. I'm pretty resentful at times, especially when I can't get the help or answers I need or when I see my peers traipsing around and fulfilling dreams and stuff that I wanted to do and cannot join in on and will possibly never recover enough to achieve.

Like pregnancy. Due to the nature of my pain, I will probably be on strong pain medication for the rest of my life. That's just a fact of my life. (Ugh, my poor organs…) The implications of that, however, mean that I would have to stop my pain meds (and a couple others) in order to carry a baby, and that's not something that is feasible for me at all. Remember how I ended up in the hospital and ER a ton last month? Yeah. Just like that. And do you think that the stress of being so sick and in so much pain would be good for a developing fetus at all? Not a chance. Either way, my baby is at a distinct disadvantage while residing in my womb.

I'm never going to be able to carry a baby of my own, and that grieves me something awful.

People don't understand. I've shared with a couple of friends, and with Drogo, but the response I get is "Don't worry, you can adopt! There are other options. Have you thought of surrogacy?"

You guys. That's not the point, not the point at ALL! I know I can adopt or do a surrogate pregnancy. Creating offspring is not the issue here, the issue is that I am never going to be able to carry a baby or give birth, and that's something I've wanted for a long, long time. It's just another precious dream ripped callously from my heart and tossed carelessly on the midden. I don't care if I can adopt; I care that the vaunted experience of childbearing, one that I've already had bitter experiences with, is now beyond my grasp, through no fault of my own, and there's nothing I can do about it.

But folks don't seem to catch that, even after I explain, so… I just let it go. Whatever. Who cares if Cassie's world and future is shrinking and dulling, hope and happiness sloughing off like dried up scabs?

A friend of mine, The Artist (as I will call her from now on) took it upon herself to draw me a picture since she figured that my spirits might be down lately since I've been really suffering this last month. She's right-- if you've read my blog at all in the past week or so you can see that I'm really going through an existential crisis type of depression, so this picture really cheered me up.

At first I loved it just because it's so adorable and it makes me smile every time I look at it, but then she explained the meaning that she put into the little details and I love it even more. I wanted to enshrine it forever with the meanings behind it, and this is the perfect medium to do so. First, here's the picture.

Here's what she says about the picture:

I thought you might have been feeling pretty down, so I figure I get back to my drawing board for some inspiration. And I drew you in a renaissance spoon warrior.

I mostly worked hard on the spoon and chest armor. I put a lot of meaning to your outfit and spoon weapon.

The chest armor with the tree symbolizes your family tree. Its braches represent your family and the family that you stayed with. No matter how far the braches spread a way from eachother, the roots will always indicate how much of an impact your family is towards you. The handle of the sword is the tricky part. I places a picture of a heart and a cross to represent the people that you have lost, but give you strength to carry on. If you look carefully you'll see a small vine of a plant (I think is name was David?) and a small crown for the "Chem princess" I think that is her nickname. The handle gives you the grips to carry your burdens and to help you move forward. Lastly, The staff of the spoon blade has writtings on it. They are the vows that C have to you on your wedding day, though I change the words from English to Irish, so it looked cooler and no to obvious of what I was doing. It represent of course how much he means to you, but gives words of strength and comfort.

I figure just an ordinary spoon didn't give it much justice, so I did my best to make it meaningful

I love it. I love it so much. Thank you, Artist, for this beautiful and unexpected gift that warmed my heart and lifted my spirits. I treasure it.

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

My sweet husband... I love him so dearly.

He deals with so much when it comes to my health problems, because no one lives in a bubble. My problems affect him, even though his approach is to merely shrug and keep going. "I can't do anything, so... I'll just keep going on as normal." And it's good for me, because it keeps me from flipping out and on more of a grounded, level place than if I had someone flipping out right beside me, you know?

As he was climbing into bed this morning, I groggily awoke and felt him very gently try to place his arms around me so he wouldn't hurt me, because he knows I'm really sensitive to pressure right now. I couldn't help but cry out in pain the first time, because he accidentally bumped me, but he corrected himself and cuddled up behind me, warming me with his big, floppy self.

He's been talking money a lot lately, working out the figures in his head and talking them out with me. I like it because I know where we stand financially, and I can make decisions based off of that. Even though he's the one with all the money (I keep whatever money I earn, but we all know it's not much), I'm in the loop. He's not stressed about money, per se, but we're very tight and we both know it. It makes me love him even more, though, to see him working out the bills and how we can manage, because I just feel this overwhelming sense of being taken care of, which is thoroughly amazing to me. I mean, I can't really contribute much of anything to our budget, yet he still has me under his wing, taking care of me and loving me. Who does that?!

Yesterday he was talking bills, and mentioned that he needed to get gas because he was really low. I told him to just take my car since I was so very sick and not going to be going anywhere. So he took my car to work, and it gave me the biggest warm fuzzies to see him in uniform, in my car, adjusting everything and backing out of the driveway. I don't even know why.

I just really, really love that man. I want to do everything I can to make his life worthwhile and enjoyable. I think it's working... he seems to like coming home at night :) (Even on the days that I can't bear to be touched.)

I have found the one whom my soul loves... and he loves me in return. No matter how much my body aches and breaks, that alone makes my life so rich and full of meaning that I could never consider giving up. Ever. For the sake of my husband, I will press on with a smile on my face, even if there are tears on my cheeks.

How do you accurately convey the ever-changing blend of, "I'm optimistic, I'm a fighter, I'm a warrior, and I'm not going to let circumstances out of my control get me down" and "I'm really tired of this and wish I didn't have this fight to fight anymore"?

Hurting today, from the moment I woke up. I'm not surprised, given that I was in the Urgent Care/ER for the better part of Thursday night and the wee hours of Friday morning for uncontrollable full body tremors/spasms. They think it was a rare reaction to the gabapentin, but don't really know. All I know is that they pumped me full of Valium (twice!) and I spent the next 24 hours drugged and woozy. My muscles are sore from the hours of tensing and spasming (and where they stabbed me with those super painful needles), but that's better today. It was just a weird, weird experience. I thought I'd up and gotten MS or something. I wasn't scared, but I was apprehensive... and all I could do was crack jokes at any and every opportunity. I'm not sure C appreciated that one much. It was hard for me to know how to relate to him, because he was... well... not worried, per se, because it was clear that whatever was happening was not life-threatening or injuring me in any way... but he was definitely concerned. Pacing. Watching me. Holding me and stroking my hair, my back, my hands, making sure I didn't shake right off of the chair or bed when the spasms would get particularly violent. Holding me up so I could "walk" to the various rooms/clinics/etc. Carrying me into the emergency rooms in his arms (and scaring the nurses because they thought I was seizing!! LOL) He sat there with me the whole night, solid as a rock. It was a comfort to have him nearby, especially when I finally slipped into sleep in the wee hours of the morning.

In any event, the rheum told me the other day to try the tramadol again for a few weeks since the Ty3 makes me sick, which is basically a "death sentence" for any kind of hope for relief from pain. I took 3 at one time last night, as well as two individual hot soaks, trying to get the pain down to an "I can sleep now" level (because I was still soooooooo tired!), but it took a really long time, some extra stretches, and my Yoga Pandora station to finally get me drifted off to sleep. It never did knock down the pain, really. Once I was out, though, I was out.

While I'm bummed that I missed C's only day off for a while by being completely loopy and woozy, the day before was actually a nice day. I was not feeling well, so I asked M if he would drive me around to get my errands done. He came by to be my chauffeur, and we had a grand old time. I enjoy conversing with him, and we have a lot in common, I think. We both love music, although he is much more accomplished and intelligent than I am in that area, but I think I'm gleaning things from him about music theory which I'm grateful for. We even ended up at Goodwill, and he threw some money at me in the form of buying me some well-loved books I stumbled across. I was guilty-grateful for that. (Yes, still with the same guilt issues that come from being there when people spend money on me. I firmly believe that it's got its roots in some self-worth issue somewhere, but I don't have the energy to try to root that one out right now. I'm tired.) I think I told him several times, though, that I just plain had fun. I haven't gotten out of the house to do anything with friends for a while now, and it was really just enjoyable. I felt almost normal for a while there!

It wasn't until both M's had cleared out that evening and I wandered off to bed that I began having the full-fledged full-body tremors, though I had been extremely fatigued that entire day. I just don't know what's what and related to what anymore. Who cares? I just know that I'm really tired today, I'm hurtin' like a big, pulsing, electrified bruise, but I'm also strangely optimistic.

Yes, I'm tired of dealing with the pain and such, but something that M told me while we were discussing it gave me a lot of hope. We were discussing how, on the whole, I have made steps forward in regards to dropping pain levels. (I have! I have! When you look at it over the span of months and months, I can see myself inching forward!) Yet, at the same time... I am oddly fearful of "getting better". I know that with the autoimmune stuff and with something chronic like this, I'll never be totally free. I won't. And while that's comforting because it lets me know that I wasn't just malingering for a season of my life and exploiting those around me, on the other hand it's kind of depressing. I still struggle with that black and white mentality so much, though, that it's either I'm "sick" or I'm "better". So if I get "better", then I was never really "sick", now was I? I mean, I could have gotten better at any time I chose, right? So it was my fault, then wasn't it? But if I never get better, then that validates the understanding that it's not my fault, that I'm not choosing this, and that I am trying my best, really.

I didn't articulate all of that, but touched on a few things briefly. Anyway, he pointed out that when I'm better I'm still just going to go out and help other people who are struggling and fighting in the way that I am now, and I'm still going to be kicking ass, so why worry about it? It made me think of the HJ, the work I'm doing now... how being in a better place, being in an awesome healthy relationship, doesn't mean that I was never abused. Hah! Right. That's laughable. But I can turn around and help others who have gone through similar things the best that I know how. I guess it's the same.

So while I'm whimpering and licking my wounds and thinking "good grief this sucks, I'm so grateful for pain killers!", I'm also thinking... "You know? I'm pretty badass, especially on tough days like today. It's so easy to be happy when you're not hurting. It's days like today that remind me I'm a warrior."

I hope I can remember that throughout the rest of the day. The morning is young, yet, after all...

And yes, I know you're reading this. So thanks, M. You were more of an encouragement than you knew.

Note: I learned another step in a valuable lesson yesterday, too. I can ask for help, and people will respond and help me. And it is not an imposition or a burden. If it were, they would say no. How do I know this? Because I am careful to surround myself with healthy people, or ones that are trying their damndest to be healthy and whole... and that means that our friendships and relationships are also healthy. And that means no manipulation on either side. And that means that asking for help? It's really just asking for help. And the help that is given is given freely, because we're friends.

Now that's a cool place to live.

Good things have happened, as well as sad things. I'll write about my birthday and house stuff tomorrow, because I'm busy with other stuff right now.

I just wanted to note that I'm being rather strongly encouraged from various sources (who know nothing of one another) to take my writing seriously, and to take my unique perspective on chronic illnesses seriously, and to do something with them that will help the world.

This means a website/blog.

Yeah, well, I feel pretty thoroughly inadequate for such a task as that. I mean, who would want to read my stuff? I'm just a lady who has problems and likes to write about stuff. Is it really worth sharing with the world? Could I really make any difference at all? Is it just delusions of grandeur, just pride and misguided intentions leading me to overstep my bounds?

Yet I am assured by my friends sitting in the living room with me that, even if something has been said a million times before, everyone relates to it in a different way. The way that I state something may be just the thing someone needs to have an "aha!" moment, when they had read the same thing written by someone else and had no response whatsoever. It's true. I know it's true.

I'm just so scared of failure... of putting myself out there and being shot down.

Scared of dreaming big.

Scared of doing something that matters.

Scared of wanting to make a difference and realizing that I can't.

Scared of being weighed and found wanting.

'Cause really? I love to help people. And I love to write. How could I  not want to combine those two loves?

Because when you put all your eggs in one basket, you run the risk of them being crushed.

Ah, well, no use running over and over my fears. I'm scared, it's true.

But I'm also very desirous of pursuing this opportunity... I mean, is it just coincidence that I'm being encouraged from so many sides so strongly, so seemingly suddenly?

My friends have come up with a domain name for me-- Fibro Warrior Princess. It's a nickname they bestowed up on me, and I love it. Then they said I ought to use it as a domain name.

You know what?

I think I'm totally going to go for it.

Watch out, world-- the Princess is on the loose! ^_^

You know what? Today was a good day, and I'm proud of myself.

I know, I know... what a shift from my sobfest of last night, right? Yes, well... here's the thing about emotions: they're subject to change. That's why you can't base your decisions solely on them. Sure, they have their place as informants, but man, they can be fickle little things!

I did good today, y'all. And I'm not just talking about productivity levels, but more about being aware of myself and what I have to give... counting my spoons, if you will. I'm very tired, but I didn't overdo it. I almost did a few times, but caught myself before I went too far.

Productivity-wise, what did I do today? I'm so glad you asked! I'll tell you :)

I was supposed to go into work today, but a family emergency of some sort canceled that, so I got to sleep in. I was grateful, because I woke up at 8:30 from pain. I took a pain killer and a hot shower (Yaaaaay! I showered today! lol) and was able to drift back off to sleep around 10:30. It was nice, because I got to cuddle with C all snuggly and warm.

When he got up at 1 to get ready for work, I decided to wake up as well. I stayed in bed for a few hours doing internet stuffs, then arose and got ready for the day. I made the bed, opened the doors for some fresh air, and proceeded to clean. I knew that I would have to be careful not to push myself too far, as cleaning is one of the things that I get carried away with super easy. I tidied up the bathroom and fixed the shower curtain that I'd been wanting to work on for a couple of weeks. Then I got my roomie to do his dishes, did my dishes, wiped down all the kitchen counters and swept the floor. It was at this point that I realized that I would need to stop soon, but I was able to vacuum the main living area before I had to go lie down. (I was literally telling myself, "Go lay down, you need to lay down... now. Right now. Go lay down.") (Also, lie vs. lay. I never can remember which is which. I should google that.)

After a short rest, I took S to his friends' house, dropped off my laundry, hit up Wal-Mart for a couple of groceries and the final part of K's gift, then I jetted over to the mall to catch a free, open-air jazz concert with my friend C. The concert was really cool, and I'm glad I went. It got chilly after the sun set so my joints started complaining, and I was getting really hungry, so I ended up leaving before it was done, but it was great nonetheless. I had planned on visiting another store while I was there at the mall, but I knew that to do that would definitely be pushing myself past my limits.

I went home, ate, and rested up before I went back for the next step of my laundry. Then I pretty much just hung out on the internet until C got home.

Also, today I talked to my mom! I'd been feeling as though she'd been distancing herself from me lately, and it hurt... especially because she's one of my best friends, and I'm going through a lot right now, and I really need her support and advice. And with the wedding looming? I'm nervous and scared and slightly overwhelmed, and I really need her right now. To put it simply, I still need a mommy! So I wrote her a message about this, and we talked about it. Sure enough, she's dealing with a lot, as I suspected, and is very overwhelmed herself right now. (She assures me that my needing her is not a burden, which I'm grateful for.) She was kind of backing off, not wanting to take up my spoons and wear me out, but I insisted that I'd gladly use a spoon or five or fifteen to talk to her. Long story short? We're good, and it was not a big deal, really. Just a small bump in the road that was easily corrected with some clear, honest communication :)

Did I mention that I treated myself today? That blog post I read yesterday (the one that kicked my butt, remember?) had some really good advice in it. One of those pieces of advice was to reward yourself for your accomplishments. Not only was today a good day, but I've been trying really hard lately to be good to myself and keep balanced, and I'm proud of myself for that, too. So while I was at Wal-Mart, I was rooting around in the $5 movie bin and found a Planet Earth dvd and a Blue Planet dvd... and I got them! Not only is it a reward/treat for myself because I've been doing so well, but it's an investment for those future days when I'm not feeling well and end up on the couch watching movies. So it's a reward and an investment! Am I good, or am I good? :)

I'm tired. Very, very tired. I didn't overdo it, but I am ready for bed... especially because the gal I'm tutoring is coming over at 10 am tomorrow. Also, hopefully C and I will be able to hit up the antique car show tomorrow! If he can't make it, I'll go on Saturday on my own. It's a kind of tradition for me to go every year, and I don't want to miss it, even if I have to go by myself. I'd much rather prefer to go with C, of course...

And, with that, I'm off!

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?)

Well, yours truly is the possessor of one healthy colon!

Yeah, I'll admit, it was a bit of a shock, considering what troubles I have with my digestive system! (I suppose this means that an upper endoscopy is coming down the line... I wonder what that's like???)

Anyway, the intestinal mucosa was normal, no signs of inflammation, colitis, hemorrhoids, polyps, blockages, or anything.

The last colonoscopy I got was in summer 2008 (July 16th, to be exact, because it was my sister's bday and she spent it with me! What a sweetie ^_^), and it showed mild colitis and internal hemorrhoids.

You know what this means?

This means that all the agony and super big pain in the butt of avoiding my allergic foods actually means something-- my colon has healed itself! By taking out all the damaging elements, my body actually healed itself.

Oh, you have no idea how much hope that gives me... as well as encouragement to stay the course and stick to my strict diet. Now that I know it actually makes a difference, well... I actually kinda want to be strict. I want to cheat less, not that I have been. C is a great accountability partner :)

The process for getting ready for the colonoscopy? Not so encouraging. I already talked about how I spun into a big-time flare thanks to having to deal with a couple of major triggers. Besides just the fibro, my system gets really out of whack if I don't eat when I'm hungry, and that's been the case for about as long as I can remember. Like, I physically get ill and experience intense pain if I allow myself to get too far past "hungry".

Well, I was there last night to be sure, but many, many mugs of warm tea seemed to help... but that, combined with the residual air left in my colon from the examination had me in literally excruciating pain as we left the realtor's office this morning. I was doubled over on the way to the truck, and C was helping me hobble along. Once I got in, all I could do was fold myself in half, clench my fists and grind them into the seat while I sobbed and gasped for air. You know that scale of 1 to 10, 10 being the worst pain you've ever experienced? It was a 10.5, maybe an 11. It ebbed and flowed, finally subsided about 45 minutes later, though I wasn't crying through the whole thing. It dropped down to like an 8, which is bearable, and I made it home to lay down.

C was so sweet during the whole thing. (What was happening was that my system built up a lot of gas as a response to being forced to be empty, and then eating triggered it to go through my guts. That happens sometimes, and it's agonizing. That, combined with the air that was already in there, was stretching my colon beyond its limits. Do you know how many nerve endings your colon has? Like, a ton! lol) He helped me make my way slowly to the car, he rubbed my back while I was doubled over and crying, asked if I had anything I could take when I got home (I'd already taken a tramadol 1/2 hour previously, so the answer was no) and then he had his hand in front of me as he drove so as to keep me from needlessly jostling forward and backward. (You know, like when you slam on the brakes and you put your arm out in front of the passenger to protect them? Like that.) He was careful to stop slowly, to take dips slowly... just being very considerate. He helped me inside as well, and got me laying down. He did say, "There's nothing I can do for you, lady," to which I replied, "I know, but just knowing that you care makes a big difference. I really appreciate it. You're so sweet." He made sure I was all tucked in and comfy before he left for work, as I hadn't slept the night before and really, really needed to.

I know he feels very helpless when I'm in large amounts of pain, which I totally get. While I was home and Mom and I got so sick, I felt so very helpless as she wept in pain and could barely move to get herself up off the couch and to the hospital... Come to think of it, I looked a lot today like she did then. And, I mean... what can you do, really? Nothing. Nothing but go about your daily life and hope they feel better. So C feels helpless, but I make it a point to assure him that his gestures of caring mean a great deal. While they may not take away the pain, they make it a little more bearable.

So we saw a realtor today! She sent us a list of houses within our price range, though we still have to get pre-approved for a loan. She pointed us to a very reputable lender that may help our chances of getting a good home, even going so far as to call her while we were there and leave a voicemail when we learned that she was with a client. The lender was very prompt in returning our call, as we got the call literally right after we left the realtor's office! lol. Anyway, we gave her basic application info over the phone, and we go in to get pre-approved tomorrow morning. C is determined to really pursue this, which I am ecstatic about. I'd gotten so used to waiting for him to pull together the necessary resources that such a fast pace is a little shocking to me, but... I'm so stoked!

Today, I'm feeling run down. Yesterday was a tough day physically, though I still feel that I got a lot done.

I took my walker with me when I went out running errands, and I'm glad I did because I was hurting. I didn't realize how bad it was until I was down on my hands and knees mopping the kitchen floor later and it took all of my energy to finish. My kitchen is like, what, 6 feet square? I did finish, but I had to spend a few minutes recovering enough to get up off the ground, chest heaving with the exertion.

Sad. That makes me sad.

So today I'm feeling run down, especially because I had a lot of gut pain last night and that always wears me down... and as I was contemplating it, I was thinking that maybe I'm on the downward depression slide... but I started to check my self talk, and I realized that I'm just feeling run down physically. That's okay. I'll just do what I can today, and it'll be good enough. (That further goes to prove my theory that what triggers my depression slides is physical problems, and then when I'm vulnerable and not able to perform at the level that I want to, the Should Monster comes in to kick me while I'm down. Then I spiral out of control and end up in the black pit.)

Anyway, a friend of mine sent me a link this morning to a post that contained a music video that really cheered me up and encouraged me to keep on fighting. Yeah, so maybe I can't do today what I could do another day, but that's what makes it a fight, right? If it were easy, I wouldn't have to try.

Here comes a fighter! :)

(Thanks, H.)

There have been a few interesting twists and turns of events in the past few days. I just haven't had the energy to think about them, only react in real-time.

So Tuesday was kind of a sad day, with this giant wall of "shoulds" looming over me that I felt in no way equipped to fight. I felt trapped by my body and my health problems, trapped by my financial situation, trapped by my living situation (more on that in a minute), like I was failing as an employee and a productive member of society, and just generally defeated.

See, it's one thing when the Should Monster (who bears a striking resemblance to the Cookie Monster) is stridently insisting upon one particular Should. It's a whole 'nother ball of wax when it feels like a veritable tidal wave of Should is bearing down upon you, and you can't pick out one particular thing to combat.

I can't be too hard on myself, though, because truly, I'm still learning how to pull out my tools and deal with this stuff. I'm not going to get it perfectly the first time, or every time for that matter. So I forgive myself for not immediately bouncing up and away from the sadness and the Shoulds and the defeated attitude.

Wednesday, I had my last session with my counselor. It was a good one, and I realized something interesting towards the end, beyond the things I already know. Like, I know that the Should Monster is handing me a load of crap and I need to stand up to it, and self-affirmations will help a ton in this regard; that I am afraid of either living up to or acknowledging and owning my awesomeness, because then I feel like I have to perform at this super-high level all the time and that just kind of sets me up for failure and disappointment, so it's better and easier to just put myself down all the time and operate under the premise of "I'm messed up, I'm sick, I'm so screwed up" all the time.

I learned that I perform in spurts. Seriously. This is how I operate best. Rather than having to be operating or performing at a certain level all the time (think 9-5 job, 5 days a week), I am way more productive and don't have meltdowns when I have a spurt of awesome (however long that lasts) and then can retreat into non-productive mode. Think artist, or wedding planner, or somesuch. Musician. Trapeze artist. Writer. Whatever. Being "on" all the time doesn't work for me. And realizing that is super freeing and empowering. Like, just realizing how I operate is... cool. Part of what's been such a downer about the struggle with work is that I "SHOULD" be able to do that 9-5 thing and make it work and get over myself and just survive, right? Dude, I'm just not wired that way. Even if I weren't sick, I would still hate it and get burnt out. Which I have. Again and again. And being frustrated by it because I couldn't understand what was going on.

I also realized that I tend to live so much in the present that it's hard for me to see past this moment. I know it's a little weird, because I have struggles with being fully present in the moment, but let me explain... It's like, whatever is happening now is how things will be forever. If I'm happy now, I will always be happy. If I'm sad now, I will always be sad. If I'm in a place of limbo (which I am), things will never change and it will always be like this and I've failed. If I'm succeeding, it will always be like this... and when it changes, I'm devastated. Destroyed. Because I must have done something wrong, or else it would have always been like that.

I have a hard time understanding on a very fundamental level the ebb and flow of life, the changing, and the fact that whatever is happening now... will not be this way forever.

Maybe it comes from the type of childhood I lived. When things are crazy and dysfunctional, you're not thinking of the future. You're reacting to right now, and this is all there is. "Right now" is your world, because you never, ever know how things are going to change in three seconds. They could stay the same (Daddy's happy. Good. He's been happy all afternoon. Good.), or they could change in the blink of an eye. (Daddy was happy, but then I made a noise and annoyed him and now he's really mad and I'm being punished and he'll be in a bad mood the rest of the night.) The present moment is your world.

So. Interesting things.

But I am learning, and growing, and learning how to wield my tools with yet more proficiency. I was sad about things ending with my counselor, but I'm grateful for all she taught me and showed me. It was really a good little phase, and I know I'll always remember her fondly.

So then I've been fighting Food Stamps for two weeks, 'cause they're playing these stupid games with me. They called me for my interview a couple of times during the time when I specifically wrote down that I was unavailable, and when I (finally!) got a hold of them again, they said they'd put me back on the call list. Days later, when I haven't heard anything, I call back and find out that they never actually put me back on the list. That happened several times. Finally, yesterday, I decided to go down there after school. It was the first day that my schedule allowed me to, so I figured I'd take advantage of it. Plus they'd pissed me off the day before. After another round of calling me during unavailable hours, my calling them and them promising to call me back that day, I called them just before closing and got put on hold... for over twenty minutes. Then they hung up on me and wouldn't answer the phone anymore. (Did I mention this isn't the first time they've put me on hold and then hung up on me?) I was ticked.

As I'm walking up the sidewalk to the Food Stamp building's front doors, my phone rings. It's them, and they're calling for my interview. So I talk to the lady while I'm standing in front of the building! Hah! Long story short? I don't qualify for Food Stamps, because I'm a student and I'm working less than twenty hours a week.

Now, let me get this straight.

You won't help me because I'm in a position where I need help?

Right. Because, the lady explains, food stamps are meant to be a supplement, not the sole source of support.

Yeah, okay, so supplement me. I don't need to be fully supported. If you only knew how I'd been scraping by...! I can make it with your supplement. I'm not asking for welfare, here.

So I explained that I'm physically incapable of working 20+ hours a week while in school, but it makes no difference.

The door is closed in my face.

So I did what any normal woman would do... I went to my car and I cried. Because I don't know how I'm going to survive. Food stamps are out, disability isn't an option at this point... work is a mess right now anyway, but I'm doing all I can there... I'm out of options, and the only thing I can do at this point is live off of my credit card.

So I cried.

Then I called my mom. And she sympathized, but had no ideas for me, except that C should be supporting me.

I've heard that from people before, and I disagree.

It's not that he won't help me out if I ask, because he will. He's proven it, and he's blatantly stated that he won't let me go hungry. That's great. But, though we are engaged... I am not his financial responsibility. I didn't move in with him so that he would take care of me. We never, ever agreed to that, and I refuse to place a burden of responsibility on him that doesn't belong there. Just like if I moved back in with Gramma and Grampa, it wouldn't be their responsibility to take care of me, just because I'm living with them, just because I'm their granddaughter. It doesn't work like that. So I guess I get a little up in arms when people question C's moral integrity for not "taking care" of me while I'm in my dire straits here, because it's like judging him for failing to do a job that's not his. You know?

So I thought about it all day, and I finally decided to bite the bullet. Unfortunately for me, I didn't even think of the fact that I'd had all day to mull it over and C had just gotten home from work and needed some time to decompress, because I just hit him with it right after he walked in the door! I apologized later-- it was thoughtless of me, and rude. He accepted the apology and told me it was fine. Whew.

Now, we've had several "serious" conversations the past few days. There was Tuesday, when I broke down crying because I felt like a failure. (He maintains that I'm not.) Then there was Wednesday, when I had realized from Tuesday's conversation about having space of my own and feeling like a hangers-on that it's really, really important to me that a.) I know that when the house is purchased that it's our house and not just his, and b.) it's really important to me that after we're married we have our own place and space (i.e. no roommates). That was a good convo, and it went well. And, yes, it will be OUR home, OUR house, not just his. It's hard for me to feel that way now, because he's the one putting all the finances toward it... but when we're married, we're partners. Equals. His house, my house. (Right now, in the bachelor apartment, my stuff is kind of socked away in convenient locations because I came along last. He was already settled, and so was S, so it's their place, it feels... I just happen to live here.) And I'll be the one decorating it and cleaning it and all that, so I think I will feel more ownership. Right now is just a weird time of trying to fit myself into convenient little gaps.

I explained what happened with the food stamps, and C was sympathetic. He was very upset on my behalf when they were being so frustrating, so I knew he'd understand my disappointment at being turned down. So then I told him how I went and cried, and then I just asked him... I asked him if he'd be willing to support me until I can graduate and get a job. I know it's bad timing, what with trying to save for a house, but I'm trying my best and I'm doing all that I can, but I'm stuck in this weird limbo and falling between the cracks and I just don't know what else to do.

He asked how much I thought I'd need a week, and then he kissed the top of my head after I told him, "Sorry." He said that he knows I'm trying my best, and that means a lot to him. It's not like I'm just sitting back and doing nothing. So I asked for $200 a month. That will cover gas and should cover most basic food. I will continue to work and go to school... none of that will change. I'm just getting some help from my sugar daddy :) He says he knows what he can afford, and he's told me before that it's not like I'm a gold-digger. I hate to ask him to do this for me, but... I can't see any other way at this point.

It was funny-- I had texted him during the day that I wanted to make Rice Krispies treats, but he doesn't get the texts until he picks up his phone from the weapons locker at the end of his shift. So he's walking out the door with some other guy, and his phone goes off. When he sees it's from me, he's like, "Uh-oh, that's never good..." So he opens it and reads, "I want to make Rice Krispies treats...", and he's like, "I can deal with that. I can very, very much deal with that!" LOL He told me the story when he got home.

So we traipsed off to Wally World to get the ingredients, and while we were there, do you know what he got me?!??!

A neon/fluorescent sweater! Like the one I used to have in high school! (Actually, he's the one who bought the first one for me, while we were up at Ren Fair the year it was super cold and rainy.) I wore that thing to death, and finally got rid of it at SOULS, because I learned that you weren't supposed to draw attention to yourself with your clothes... and neon is definitely attention garnering. In the years since, I've regretted getting rid of it, since I figured I'd never have an opportunity to own one again.

I thought wrong!

You should see this baby in the sunlight. It'll sear your retinas right off :D

So. That has been my past few days. What an adventure. *sigh*

And what a good guy I've found.

Thank you, God, for my fiance.

And with that... I'm off to make the promised RK treats.

I am at once humbled and overwhelmed.

My parents have come through for me... again. Without my asking. Just... giving, because they love me.

I broke down to C last night, after he pulled the blankets off of my head and revealed that I was crying. The man just won't leave me alone when I'm going into crisis! (Which is a good thing, one of the reasons he's so good for me... he can deal with the waves that come up in my ocean.) I had been crying and praying under the covers, and then I was crying and explaining to C.

I felt trapped. So very trapped, financially. This last physical breakdown has/had me very discouraged, because it's not like I'm not honestly trying to be a normal, productive citizen, you know? But the kind of schedule demanded by the combined expectations and requirements of school and work together are just too much for my system to take, much to my utter dismay and chagrin. (And horror. And detestation. And... shall I continue?)

I have no savings. I have no income. I am living off of my credit card. Creditors are calling me because I have counseling and medical bills past due that I can't pay, and I need counseling and medical attention that I cannot afford. I had to drop a class because I can't handle full-time school, and financial aid didn't entirely cover my tuition costs. I still owe SOULS a few hundred dollars (that one can actually wait, it's not urgent, thank goodness).

And on top of that, I'm planning the wedding, looking at things and realizing, "I can't afford this. I can't afford even the most basic of these things. Why bother even planning if I can't do anything about it?!"

And then there's the HJ. That letter to E that I wrote. I'm going to re-write it. It's too snarky, to rant-y. I still feel like a "confrontation" is necessary, but not like that. In a different way. A loving way. (I'm SO glad I have this blog to blow out all my hot air before I do the real deal!)

There's the fact that I think I might take a hiatus from HJ. The fact that E will feel like I'm betraying her, the comment her husband M made when I was planning on going away to school about how that was "selfish", and how that will easily be applied to this situation... especially when she's already stressed to the max with me there to help her.

God, it makes me sick just thinking about how things have become with the HJ. Stress. Obligation. Not just me, her too. We really, really need to step back, regroup, build sure and firm, then continue.

I was talking to Mom about it, and likened it to a game of Jenga. You know the one... You start out with the tower of blocks all stacked together firm and snug. As time goes on, though, and the tower grows higher and higher, gaps start to appear. The foundation gets shaky. The higher you try to pile the blocks, the more delicate your infrastructure, until BAM! Everything falls down, and you lose.

That's how the HJ feels to me right now. We've done so much work, built this tower so high... and that's not a bad thing! The game is moving forward. But if we don't want our stack of blocks to collapse, we need to take some time to breathe, fill in the holes, and then get back to stacking blocks.

R is putting money in my bank account, enough to pay off the credit card and my bills, enough for a few more counseling sessions, and $200 extra for food. Apparently, he hates the idea that I'm trying to survive off of $20 here and $40 there. And he absolutely despises the idea of my living off of a credit card. (As do I!)

And I applied for 3 part time jobs that I think I can do without making myself sick.

I was searching the internet yesterday and last night to see if I qualify for disability, emergency financial aid, anything. Nope. Nothing. It's like I need to have cancer to get help... because you have to be practically dying before they'll take you seriously with an "invisible illness". (Or three, in my case...)

I don't even know where my health is at anymore, because I haven't seen a doctor about it in so long. I just get my maintenance dosage of meds from the doc up in Montana and call it good, because I can't afford to do anything else at this point. I'd like to get better, I sure would... I just don't have the money for it. Kinda funny how that turns out... like a catch-22. In order to get better, I need money. But in order to make money, I need to get better. Hah! I love life, sometimes :)

Seriously, though... this gift from my parents is a God-send. I was so stressed. I felt like my back was up against a wall. I literally did not know what I was going to do. I may joke about selling my body on the streets, but I will never, ever literally even consider that. I can't go down to the plasma center and make some money by donating blood and plasma because of my illnesses. I can't do school and most jobs at the same time... and even in the job market, I'm limited because I can't work around food at all.

So I am blessed. I was thinking and praying last night about how everything is supposed to have a reason for happening... or good comes out of it somehow... and I kinda committed to myself as I was hunting desperately for help with my health/work issues that when I am steady and stable and on my feet again (again? more like for the first time!), that I will somehow find a way to help people that are in a situation like I am. People who can't really work but who tough it out enough to not be considered disabled. People who need counseling but can't afford it. People with insurance that can't afford the co-pays, so they may as well not have insurance at all. People who fall between the cracks. People like me.

...People who crawl into a dark corner and curl up in despair because they don't have parents like I do, and there is literally nowhere to turn.

I know the bitter, chalky taste of exhausted hopelessness all too well. I want to help at least one less person not have to feel the panic and despair that I felt last night... that I've felt these last few weeks.

P.S.-- I'm back on solid food again! I had a rattatouille-esque dish for lunch, and it has caused only minor discomfort so far. What joy :)

Many, many things crowding for the forefront of my cognitive attentions...

Where to start?

I was talking to Mom this morning. R came home, but he was terrified that they would all hate him and Mom would say it was over. That's not the case, and Mom and R have their first marriage counseling session tonight (actually, they're probably launching into it as I write).

I love Bebo Norman. Pandora's on in the background, and a Bebo song came on, and I just (again) realized how much I love and appreciate his music.

Okay, back to our regularly scheduled programming...

Mom and I were also talking about how group went last night (I'll get to that one-- it's super important!!) and I was sharing with her my new views on God. She was gratified to learn that I haven't *completely* gone off the deep end. ;)

How do I describe where I'm at? Well, while I was reading those books on the origins of the Bible and its trustworthiness and whatnot, I realized how incredibly humanity is mixed up with that book. I'm not sure why, but I always just considered the Bible to be a book that God essentially dropped out of heaven, and people didn't have any influence on it at all. Transcribed, rather than inspired, I guess you could say... but the thing is that people did have an influence on it. The authors had agendas and biases and mindsets and backgrounds and all sorts of things. An interesting realization, that was... and I guess it's impacted my whole view of things.

I believe that Jesus existed, and I believe that he was God incarnate. As far as his utter perfection... well... I dunno. I mean, I'm sure he made mistakes, but that's a totally different thing. I think we tend to confuse sinlessness and perfection, and I'm sure that Jesus made the odd mistake throughout his life, especially as a child. But, yes, I believe that Jesus saves. From what, I'm not exactly sure... but apparently I have no access to God except by Jesus, because I just suck that bad at being good... but I want access to God, and I'm sick of hustling for acceptance, so I have to go that route, don't I? Grace sounds mighty fine when you're exhausted from being a Christian. (One thing I don't get, though... I mean, if Jesus was sinless and perfect and all that, why can't I be perfect? Why do I need Jesus? Cause if he was able to tap into God's power and be all perfect, why can't I do that? I know, I know, I've already messed up my chances, but it wasn't my fault that I was born into a family that didn't know how to guide me in God's way like Mary and Joseph did. God handpicked that family, gave Jesus every advantage... which I didn't have, necessarily. So what's to prevent me from being good enough, like Jesus was? Was it just that he was God and I'm not? But if Jesus had something over us that we can't have, then that's not the fair exchange that it's been made out to be, and that whole "you can stop sinning and live a holy life" thing is out the window. That's been rolling around in my head for months, if not longer.)

Okayyyy... anyways...

I believe in a creator god. I'm pretty sure it's Y--W-H, but not one hundred percent positive. I just know he's out there. And I guess I'm more of a deist, now. I used to wait for God to get involved in the nitty gritty ("God, save me from abuse! Why didn't you?" "God, help me to get a good parking space!" "God, please, help me sell these books..."), but he just doesn't a lot of times, and I've had to come to grips with that. I think it's the people around us that are charged with the act of "doing", of getting involved in the nitty gritty and doing what I've always expected God to do. We learn what is right and wrong, what God would have us to do, and then we live it out, and it's the people making choices for themselves that make up the answers to prayers or the curses that dog our footsteps.

G made a choice. A bad choice. He became a bad person,  by his choices. And I have to live with those choices, because I was in his sphere of influence. I have the choice to become a good or bad person, and the choices I make will impact those in my sphere of influence. When I make good choices and give out positive energy (as new agey as that sounds, it's for lack of a better term), that's God working in the world to me.

I guess God just isn't that personal to me right now. I don't buy into that whole "romantic- God is crazy about you" hype anymore. I tried it. I'm sure he likes us, even loves us (enter Jesus-- he must think we're worth salvaging, yeah?)... but I don't see where he's really into a marriage-y type interaction like some people try to make it.

I also think that many of the things we ascribe to being God working are, in fact, the workings of people's choices and decisions. (According to my previous theory, though, that is God working, but not in the "reach down from heaven and bonk someone on the forehead" type of working, you know what I mean?)

I told Mom that, unbelievably, I've almost come to a place of acceptance. What happened to me happened, and I can't change that. I do believe that lessons and good things can come from everything, and while I would avoid what happened to me in a heartbeat, I know that I can use it to keep it from happening to others. Truly, it's total BS that it happens at all, regardless of who it's to, and this world is full of sick, sick people and it really REALLY ticks me off. Gets my ire up. (I wonder if they call it "ire" because Irish have a reputation for hot tempers?) So for now I'm off of the "God, why me?!" question, and more on to the "What can I learn and how can I help other people with this experience?" question. I know. I never thought I'd be here, either.

Anyway, moving on from the religion topic...

I've realized that I've made some mistakes with my group of girls. It's not my fault, per se, because what I really need is training, but there's been no opportunity to train and then get the group going-- I just had to jump into it. As a result, I've had no idea what to do when girls get into crisis mode or get emotional... so I've just avoided that as much as possible, which is not what they need.

I've been too lax on some things, like cussing, and there's been a gradual slide towards chaos and disrespect as we've gone on. Also, I've been too intellectual and reading-focused, but we need to be doing more healing exercises that will help the girls confront their issues and heal. Not everyone learns from reading like I do. We really need practical application, and less reading.

So, lessons learned, curriculum being totally revamped from the ground up, and I'm doing research on the side to learn how to be a better peer support facilitator.

Last night, we did roleplay and confronted our abusers. E came into the class to help me explain some of the changes that will be going down, and she led this exercise.

There were many, many tears, and a few of the girls didn't feel like they were ready, but I don't blame them. It was tough. E took the role of abuser, and she goaded us on with aggravating questions and statements like, "Why did you tell? I thought you liked it? You acted like you did. You know you wanted it. Why else would you have let me do it?" etc.

It was my turn, and my emotions were definitely running high after seeing the other girls go through it... G's face kept floating to the surface of my mind, and memories... gracious, the memories...

I got so angry. I don't even remember what "he" said, but I basically screamed at him, asking what was wrong with him, etc. The girls on my side of the table fled to the other side, and they all hunkered like they were in a foxhole. It didn't matter, because I wasn't supposed to look at anyone but E. She asked, I answered, and oh, I cried.

I trusted him, you know. He was supposed to take care of us, the only dad I'd ever known... I suppose I was hoping he'd be like Grampa. But please, nothing like G1! No, he wasn't that sadistic, I suppose... he never put me in a hot oven, or stuffed wadded up socks into my mouth, or tried to force me to drink his piss, or laughed while he held me in a bathtub of water filled with floating ice cubes... but he threw shoes at me. He starved me. He beat me. He humped me. He touched my sacred, private parts, and he touched me with his filthy, naked penis. He spilled his semen on the blanket next to me, and I had to sleep in it. He gave me Nyquil to knock me out, and heaven only knows what happened after that. He took my underwear off and molested me in the same bed as my sister, as my siblings... more than once. He did things that I can't even remember, that I don't want to remember, that I won't let myself remember.

And still, I wanted him to be my daddy. Still.

How was I to know what a father is truly like?

Hell, I still don't know what a father is truly like.

So I confronted him last night.

I told him that I hope he gets Bubba for a roommate, and that I hope Bubba likes him just as much as he liked me. I hope he gets the same treatment, and worse. I hope that he gets popsicled like Dahmer, and I hope that he survives so they can do it again. I told him that I would say he doesn't deserve to live, but he doesn't deserve to die, either. He deserves a long, slow torture so that he can know what my life has been like since he gouged holes through my very soul and filled them with decaying garbage.

She asked if I forgave him, and I quickly replied, "Hell, no!"

Do I forgive myself? Softer, this time... "Hell, no."

Why? Because I trusted him. I feel responsible for my family, and I let the abuser infiltrate us for how many years without saying a word? It's not my fault, but I still feel responsible.

And the last, the very last thing I said to him was this:

"You can't ruin my life. You don't have that power."

I also wanted to add, "F--- you."
I abstained for the sake of the girls, though.

But it's true. He doesn't have that power. He's too weak, he's always been too weak. He can't control me, and I won't give him that. He deserves nothing, least of all my submission. If I fall to ruins, he's won, you see. It is only by releasing him that I can truly have my vengeance.

As I said my last statement, I couldn't help but smile a little through my tears and rage, because I know it to be true.

He has no power over me.

He hurt me, but I have survived, and will continue to survive. He loses. :)

Seriously, though, I wish I could bottle this rage and primordial fury. I'd sell it as an energy drink. It really charges you up.