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.

(For a glossary of "characters" and their nicknames, check here.)

I've been putting this post off for a while, because every time I think about sitting down and typing it all out, I'm just overwhelmed with the effort that it will take and I figure I'll do something easier. Did you know it takes energy to feel things, and more energy than that to actually process them or record them? Yup. Lots of energy, both emotional and mental, and most times it's easier to just say, "Ehhhh… I think I'll go look at funny pictures of cats, instead."

However.

I do need to get this all out there, because negative thoughts in my brain are like a poison that infiltrate my daily workings without my really being aware of it, and they taint my reality. So it is important to me to get it all out there, outside of me… where I can evaluate it more intellectually, without the ineffectual whirrings and endless cyclings of my thought processes. I've been trying to get it out, verbally, with the Dragon, but that hasn't been going so well. I've been very moody to boot, because I've got all these fears and feels and crazy thoughts all just tumbling around in my head and I'm desperate for consolation and affirmation and someone to set me straight and tell me that it's all gonna be okay and that I'm wrong and I'm amazing and all that jazz… but that is definitely not Drogo's strong point. It's okay. I know who I married, and while I may be frustrated by it at times I have acknowledged from the get-go that affirmations are really just not something he does well. But since he's my husband and my mate, I instinctively look to him to fill my needs (especially as he's the one around most often), but I realized recently that I've been asking too much of him, asking him to fill a thousand different roles that can and should be filled by a myriad of people. No one person can be everything to another person, and it's silly and futile to expect that… but I kinda have been.

It doesn't help that I'm a shut-in, so unless people come to me… nothing is going on. Also, it takes energy to reach out and ask for help, and often it doesn't feel worth the effort. I want people to just know that I need help, and that I need it all. the. time. and to just kind of… do things that help. I'm tired of asking for help, if that makes sense. I just want to be taken care of. I'm tired. So tired. Tired of phone calls and doctor's appointments and medical bills and futile attempts at keeping the house tidy and being stuck at home every single day and feeling like I should be doing so much more and better when really all I want to do is curl up and hibernate and have someone else come deal with my life for me so I can focus on just being sick and hopefully getting better. (Essentially? I just want to be a house cat.)

Right. So there's all that. But anyway, I realized that the glories of the internet mean that I can reach out to my friends that are scattered across the country and dump on them instead of my husband! Genius, right? So that's kind of my plan… is to spread my woes a little more thinly and evenly across the network of "people who give two shits about me" and ease some of the tension that I've introduced into my marriage. Being married with (and to someone with) a chronic illness is hard. He's doing an admirable job. I just have a ton of feels that I don't know how to deal with and neither does he and so we're left with a bunch of elephants in the room, but if you've seen my living room then you know that it's barely big enough for the furniture we have in there much less a bunch of elephants and so it's pretty crowded and we're both on edge.

The other day we were in line at the bank and I started talking about how I feel and the negative thoughts rattling around in my head, but Drogo told me to stop talking and wait in line quietly. Why? Because what I was saying was bad and not true and he didn't feel that I should be giving power to those thoughts by speaking them as though they're reality. He told me to "write about it". So here I am. But see, the thing is, I already wrote about it the other day to Rose, so I'm going to do some copy-pasting here in a minute… but first I want to bring up a couple of things that I haven't really discussed with anyone, save Drogo (briefly) and one or two of my fibro friends (again, briefly).

I'm terrified.

That's no secret, but the thing is that there are many things I'm terrified about. The one that I haven't really voiced to many people yet is this: I'm so, so, so afraid that there's nothing else wrong with me, that it's "just fibro", and that there's nothing fixable or treatable about my situation. I've tried all the fibro meds, and they did worse than nothing. I'm still on gabapentin, a fairly high dose, but my pain is still at high levels most of the time. I stretch and exercise a little every day, I eat as healthy and simply as I can, I hydrate, I tried yoga (which I still do because I love it and it feels awesome sometimes), I tried acupuncture and massage and Kangen water and yes I take B vitamins and my vitamin D levels are good and so are all my other mineral levels… I do all the right things, but I am still getting worse and worse… and if it's "just fibro"… then it seems there's nothing I can do about it but hang on for the continued decline and hope that I die before it gets too terribly miserable. (I keep saying, "I don't know how it could get worse… how could I possibly feel worse than this on a regular basis?" And then it happens, and then I'm sad. And round and round the cycle goes.)

I'm scared that we'll never find out what is really wrong with me and I'm just going to get sicker and sicker as Drogo stands by, watching helplessly.

I'm scared that I'm going to get worse and worse and worse until I'm basically just a sad piece of meat with a pretty face that can't even go to the bathroom by herself.

And then there's the existential crisis part of things… and this is where I'm going to copy and paste from my conversation with Rose, because why explain things twice when the first time was eloquent enough?

"Speaking of rehashing stuff… I've been having a very hard time lately with my sickness and disability.

Maybe because I got the news it's not lupus… because now I STILL have no answers… and the thing that seemed to fit so well (albeit a horrible fate) just isn't, and I don't know what it is and I'm really afraid that it's all just in my head you know? That, like, somehow I'm making myself sick... And I'd stop it if I could, but I don't know HOW.

And I'm afraid that deep down I don't really want to stop it because this kind of gives me a free pass out of life, you know? And responsibilities.

Blah. I dunno. It's just so HARD to be sick all the time and not know WHY and not know how to FIX it and for even the meds that are supposed to help to not really be effective… and to wonder if I'm just going to keep going downhill until I eventually die of some mysterious cause?

And I'm just like… what kind of a wife am I? Kahl Drogo married me expecting to have a partner in life, to have babies and make a family… and he got THIS.

I feel so LOST. Especially now that I can't even do the healing journey anymore. Like, what's my purpose for even being here? What is the point of my life? What good am I? I guess it comes down to intrinsic self-worth. Now that I CAN'T do anything productive, really… who am I? What am I worth? What can I contribute to the world?

“It must be really tough to not feel like you're contributing to the world”

Yes, it is. I don't know what to do with myself besides sleep… I've started doing at least 1 run through of Sun Salutation (a yoga practice) a day, and that makes me feel a little better about myself… like I'm being more proactive about my health… and my weight.

I've gained more weight. I'm trying *REALLY* hard to see myself as a good, valuable, lovable person, but… I accomplish very little, I look different than I used to and how I feel that I should.. I basically feel like a failure as a human being and a woman.

Like, by the time Drogo gets home I'm usually feeling so terrible that we don't even have sex hardly at all anymore. And I think that hits me the hardest. I know it's because he cares about my physical health and doesn't want to make me feel worse (and sex often does have a backlash on me and I kinda flare), but I have a hard time not believing that it's not because I'm now an unattractive, heavy person.

Oh Rose… I'm just so lost right now. It's so HARD. LIfe is just HARD, and I can't understand why...

I have SO MUCH to offer the world, and I'm trapped by my body and my circumstances and it's NOT FAIR.

Like, why me? Why not G? Why not people who do terrible things?

I've only ever kicked a kitten on accident, I swear!

And I'm just so lonely...

Oh Rose… life is just so hard.

And I don't know what i can do about it, if anything.

At least I don't actually believe the person who told me that I got sick because I left God.

It's just really hard to find reasons to keep trying.. to keep waking up every day… to keep living.

And that terrifies me.

And what scares me the most is that, based on personal experience… I can only expect this to get worse. How much worse can it get? I can never imagine how I can feel worse, but then it comes and I do...

How long am I going to have to live like this? The rest of my life? Is my health just going to keep deteriorating for unknown reasons for years and years until I'm basically a pain-wracked vegetable?

Rose, I want to have kids! I want to grow a garden. I want to hike the Grand Canyon rim to rim. I want to travel to Italy with my babies and feed them awesome food and show them old buildings and wonderful paintings. I want to make my family pancakes on the weekends and keep the house clean so my husband WANTS to come home to his happy family… I want… I want so much.

I just… I don't understand. And that's okay. I know I don't have to. I just wish that I had something to cling to...

Even when I was a Christian...

there wasn't much hope for me, sadly.

Just the fear of what would happen if I didn't do it all right. I know now that that's not the way.

Someday I'll find it.

But I still believe in God… in higher purposes…

but I just don't see how my being unable to contribute to the world serves a higher purpose.

So anyway… now that we've hashed… lol. I'm just having a hard time lately. Drogo knows, he understands, and he's been good about it. Really good.

We talked about how I'm less physically capable than I was before, as much as I hate to admit it, and I need help keeping the house somewhat tidy since that is VERY important to me. (And let's face it… I have to look at it all day lol)

So now he is in charge of sweeping the floor every other day or so. And he also *finally* got on the ball about the water leak in the front yard and we went to Lowes the other day and got a rake and a shovel.

Tomorrow he will probably get some of the guys over here to help, but he's going to dig up the front yard and see where the leak is coming from and fix it. It's been a month or two in the "putting off" phase lol"

And that's where I am. I'm scared, I'm lonely, I'm overwhelmed, I'm really sick… and I'm so tired. Tired of fighting. Tired of having to fight, each and every day for… for what? I'm lost. I'm lost and lonely and fighting to feel like a decent, worthwhile human being.

And you know what else? I didn't mention this to Rose, but I'm angry. I'm very angry. I'm angry that I've been "struck down" and so many other people are free to do as they please with no physical ramifications and they feel fine and they can go about their lives and work and have fun and raise families and I can't and I don't know why and it's not fair because I'd be so amazing at all of those things!! I'm angry because the Dragon has the physical capabilities to do anything he wants… but he doesn't. I mean, he does do what he wants, but he doesn't do what I would do if I were to have his health. I'm angry that he gets to be healthy and I don't, angry that he is healthy and chooses to put stuff off anyway, angry that he's fine physically and he doesn't automatically step in and take care of me… angry that I have to ask so hard for what I need when he can so easily provide it… angry that, after months and months of asking, NO ONE in my circle of healthy friends has stepped up and helped me straighten up my goddamn craft room!!

I'm furious that I'm at the mercy of everyone around me, and it doesn't feel like people really understand that or care as much as I'd like and need them to. I'm furious at how helpless I am, how lonely I am, and how I'm powerless to do anything about it when I used to be such a powerhouse of getting stuff done and helping people and being there for others…

People I know keep telling me, "Oh yeah, call me when you feel better and we'll get together!" Folks, it's not happening. I pretty much don't ever "feel better". I have about three modes: feeling bad/poorly and worn out; feeling awful/exhausted/all I can do is sleep; Please Kill Me, You Would Be Doing Me A Mercy. So if you want to see me, you have to come to me. Come pick me up, take me someplace. Call first, see if I'm sleeping or feeling abysmal, and if I'm not I'll probably come with you as long as you are the one making the effort to drive, make plans, etc. I go with Drogo on errands on the weekends, even if I'm feeling really gross, just because I want to spend time with him and that's my one chance during the week to be out and about. I may drive to and from a doctor's appointment some time during the week, but that doesn't mean I'm "out and about". I'm trying to scrape together enough energy to make it there, get through my appointment, and make it back home safely so I can collapse on the couch or into bed.

If you miss me… show me. Come to me, because I can't come to you. A few people do. But not most of them. And that both angers and completely engulfs me in grief. I've had friends tell me, "You're isolating yourself. That's not good. You need to get out and do stuff again; get involved." Oh, I would if I could. Maybe I am isolating… but not by choice. And I'm furious about that.

So please, those reading… feel free to comment with some affirmations. God knows I could use it right now. My body always feels like junk, but it's hard to have your heart and soul feeling gross, too.

Don't worry, I'm better now.

C came home, and I spilled my guts to him. He sat on the couch with me, my legs across his lap, and rubbed my aching knees while I cried and blathered on about what was going on with me. He listened attentively, gave me wonderful long hugs and cuddles, and then sent me to the tub for a soak to ease some of my pain and help me unwind further. Oh, how can I forget the awesome words of affirmation he gave me as well? I'll get to that, though. It makes more sense in context.

While talking to C, I was able to kind of pinpoint some of the factors that brought me to the sad place I was in last night. First of all, I did some research yesterday morning on alternate names for soy and gluten hidden in foods. It was... discouraging. The list is incredibly long, especially for soy, and I've been unknowingly ingesting soy in some of the foods I had previously thought were safe. I'm not as concerned about the gluten, and the list is shorter for that one, but I am definitely sensitive to soy and want to stay away from it. I guess I was just frustrated by the thought of having to refine my diet even further, and this means that I am going to have to do more cooking. That thought is daunting, because I often am so tired and ill and in pain that cooking is difficult. Now I have to cook, because I can't just get stuff from the store. I mean, can't I catch a break?!

So there was that. And then I went to work, even though I really didn't feel like it. At the end of the work day, we stopped by the store to buy turkeys for the turkey boxes we're giving away to several families. The lifting of the turkeys in and out of the cart, the walking around, and the waiting at the register for 15-ish minutes while the clerk messed things up several times took a toll on me. By the time I got home I was aching fiercely. I had decided earlier that I would not be able to participate in the bar tending fund raiser that's coming up for the HJ which discouraged me some, because I feel like I'm always letting the agency down and it was just another indicator of how much things have changed for me, how much I can't do anymore. The trip to the store validated my decision, but that didn't encourage me any.

On the way home I stopped by the store to pick up my pain killer prescription, which I had to buy without insurance this time for slightly complex reasons. I had expected it to be forty, fifty dollars maybe, as it was several months ago when I had to do the same thing. Because I am taking a different sort of med, though, it came out to over one hundred dollars. All that for less than a month's worth of semi-functioning capability. If that wasn't depressing enough, that also means that my credit card is now maxed out. It's not like I've used it for frivolous things, but having to live off of it for a while last year, various medical expenses, groceries from time to time, and household items when we first bought the house have all added up. I pay on it regularly, but I don't have much in the way of disposable income so it doesn't make much of a dent. The sicker I get, the harder it gets to pay on it... and the more I end up having to use it. It's a vicious cycle.

I've always had difficulties relating with money, but not in the sense that I have a hard time managing it. I'm good with money, when I'm able to make it lol.  No, the difficulties I have are that I don't feel worth it being spent on me. The high price of my pain meds was a blow to me, because C will be the one that gives me the money to pay that off, and I question deeply whether I'm worth it or not. I don't feel that I am. I hate being in debt for any reason, and I'm in the largest non-tuition related debt I've ever been in. I feel like I'm failing at life (for so many reasons) and I'm just dragging C down with me.

I think the money thing, the high price and the maxed out credit card, was the deeply insecure straw that broke the neurotic camel's back. The blow to my already wavering self-worth and self-confidence was fierce, and then I came home to a messy house that I hadn't had the energy or  good enough health to clean in several days. I was hurting, discouraged, and found myself thinking, "What's the point? Why should I even keep trying? I can't seem to make this work. I'm failing at life, and I'm taking C down with me. Am I worth this effort?"

Well, C's love, listening, and words of affirmation really did a lot to boost my spirits. When I was exploring my feelings about money and self-worth, he told me, "You are worth more than money." He also laid out his financial plan for the next few months, which put my heart at rest some. We're going to be okay. I am not breaking him financially. We're going to get through this. It's going to be okay.

Most importantly of all, the look of pure, overwhelming love in his eyes as he stroked my face, held me close, and kissed me deeply buoyed me up like nothing else could have. Even after I had just spent the better part of half an hour rambling and crying and being sad all over him, he still had nothing but love and support for me. I knew I knew what I was doing when I married the guy. Sometimes all it takes is just for someone to listen, affirm, support, and accept to really turn things around. I went to bed happy and fell asleep quite quickly, which was a relief.

Tomorrow is his day off, and I'm looking forward to spending the day together. (Well, if I ever get back to bed. I spent most of yesterday and last night sleeping, but I woke up a few hours ago from pain so I've just been watching movies while waiting for it to die down enough to sleep again.)

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

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

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

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

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

Still working with depression. Where I'm at in the menstrual cycle isn't helping. I suspect that part of it is due to hormones. Regardless, today was an off day, mentally. Sort of.

I am damn tired. Worn down. Beat up. This effing pain just won't quit, won't go away, and it's driving me insane. I mean, I can take it, and have been taking it, but you can only take so much, you know? I always tell myself that tomorrow will be the day I snap, because tomorrow never comes, so I'll always make it through today. Heh.

Today, though, I was a bit rebellious. Maybe I just gave into the "eff it" mentality, and maybe I just wanted to stop trying so hard to be good when it seems to help so little, if at all. Yeah, I ate something that I am really not supposed to. I think I am allergic to every single ingredient. Regardless, it was yummy. If I hadn't eaten that small portion of the forbidden goodness, I was legitimately going to go out and buy a pizza and a donut today. Cheese and veggies, and Bavarian creme. It was all planned out. But I didn't. Because of the other (free) thing. And while I didn't have any gut reactions to it (yet), I did have a small amount of throat swelling and itchiness/rawness. It felt like I had a mild throat infection. Scary. So now that it's more than just my guts involved, I'll probably be better about being strict... which means not cheating once or twice a year. (Really? Can I get much better about avoiding allergens? C and I don't kiss after he's eaten allergic stuff, and we even use separate sponges for crying out loud!!)

While I was out running errands, I also picked up a pint of ice cream for myself (safe ice cream!) and a bunch of movies from the library. I've spent the rest of the day watching movies and eating the entire thing of ice cream. Guess who doesn't care? This girl!

C will be home soon. That means he can finish watching The Fantastic 4 with me. I love that movie, simply because Jessica Alba is so smoking hot. I could watch her all day. C and I are supposed to take a walk when he gets home, though... which will be good for me, pain or no. I need to work off that ice cream. Hah. (Oh yeah... and those 13 boxes of cookies.)

Quick note of happiness: When C and I went back to PetSmart to exchange harnesses for Juneaux, the cashier asked me about my walking stick, since he's only ever seen me with my walker before. He asked what disease I had (one of the first to assume I didn't have some sort of acute injury!), and when I gave him a brief explanation of fibromyalgia (and mentioned the connective tissue disease too, but no explanation) he looked me in the eyes and said, "So you're just really tough, then." We all laughed, but that comment lit a warm glow inside me. I really appreciated the acknowledgment of how hard it is to live in constant pain from someone who doesn't see anything but a passing glimpse, and yet still sees how hard it is. That was cool. And you know what the funny part is? I'll wager that he has no idea how much that passing comment meant to me, or that I'll remember it for a long time to come.

I just have to remember something really nice that my friend M said yesterday. I mean, it wasn't nice in context if he had actually said it to the person he thought about saying it to, but it was nice when he told me about it.

He and his girlfriend, who is also a friend of mine and kind of part of "the circle", recently broke up. She already has issues (as do we all) and is taking it really hard, dealing with severe depression and self-worth issues, etc. They remain in contact, so she calls him when she's struggling and he goes over there to talk to her, or talks to her on the phone. Anyway, he spent an hour on the phone with her yesterday, and he's really getting tired of trying to be her savior, so he told other friend M and I that he thought about saying this particular rant to her, but he didn't because he knew it would break her.

What he felt like telling her was this:
"I know you've gone through some tough times and had some bad stuff happen to you in your life, and I know you don't feel like getting out of bed in the morning, but you know who doesn't feel like getting out of bed even more? Cassie. But she does, and she kicks ass every day. And she calls us up and says, "Hey, I'm feeling really crappy, but do you want to come over anyway?", and we do, because she made the effort. And what do you do? You stay at home and cry."

So, yes, while it would be totally mean to say that to someone struggling with severe depression (and I understand it's born of his frustration with her and the situation), it's also nice to realize that my friends feel that way about me. I didn't realize that they consider my getting out of bed and putting forth effort kicking ass, but they do... and it's pretty affirming.

These same friends have been so good in the wake of my grief, and even before that, during my last grapple with depression. They come over and just hang out with me at my house, and we have a great time. They scold me when I start throwing spoons away and going a little bit manic with my "I have to get stuff done" mindset, and they remind me to take my meds, and they drink tea with me, and most of all they just let me talk and swear and yell and just be myself in whatever capacity I need to at any point in time. I was worried for a while that I wouldn't make good friends here like I did up in ID with the S's or K, or like J from Souls, but... these guys are well on the way to being that kind of friend. I'm really grateful that these kind of people exist all over the place.

Also, I set boundaries with the God-bully again, a continuation of standing up for myself at M's memorial last night. I got a text message from them (they've employed this method before), which I was planning to ignore, but C pointed out that this is a great opportunity to set boundaries because they're an "easy target" for this kind of thing. He's right. I can set boundaries with little to no repercussions with this person, because it's not like we have consistent communication anyway.

Text said: "Cassie, I hope I didn't say anything offensive to you last night. And I wonder if you and I could do 'They That Go Down To The Sea' sometime as a duet for church? You could play your guitar and sing melody and I could sing harmony. Keep in touch, OK?"

I responded with: "If you feel the need to say something, then you already know you said something offensive. I do not appreciate being bullied into attending church, especially using god as a pretext."

This is my life
Its not what it was before
All these feelings I've shared
And these are my dreams
That I'd never lived before
Somebody shake me
'Cause I
I must be sleeping

[Chorus]
Now that we're here,
It's so far away
All the struggle we thought was in vain
All in the mistakes,
One life contained
They all finally start to go away
Now that we're here it's so far away
And I feel like I can face the day, and I can forgive
And I'm not ashamed to be the person that I am today

These are my words
That I've never said before
I think I'm doing okay
And this is the smile
That I've never shown before

Somebody shake me 'cause I
I must be sleeping

[Chorus]

I'm so afraid of waking
Please don't shake me
Afraid of waking
Please don't shake me

[Chorus]

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. ^_^)

We got our marriage license today. Now it's starting to feel official! It's hanging on our fridge, just waiting for the big day to come...

I tell you, it still bemuses me a bit how this man can look at me and see past the pain, past the limitations, past the coping mechanisms I've shrouded myself with, right to the core of me... and want to link himself to that for the rest of his life.

We're only nine days out, and I've got cold feet.

Not about marrying C, not at all! It's the thought of "forever" that freaks me out. The thought of, "I can never ever just pick up and leave again."

But then again, there are other, bigger thoughts that crowd those out... like the thought of, "This man has supported me through my lowest lows, has seen me sobbing and disheveled, has borne the brunt of my impatience and insecurity... everything. He's taken everything I and my crazy life/past have thrown at him, and he's still just here. Patient. Unendingly loving and wise. Not going anywhere."

And that's enough to quell the panic that rises inside me. Sure, maybe I'm voluntarily turning myself into a caged bird, but it's that very cage that will hold me up when I fall off my perch, dizzy with fatigue and shaking with pain.

You know, an interesting though struck me the other day... See, I've only just started to identify with the "chronic illness community" because of the fibro, and the disruption in my life makes me crave community and support. I realized, though, that I've had chronic illnesses for quite some time. I mean, the food allergies? Totally a chronic illness. The hypothyroid? Yep. Adrenal insufficiency? For sure.

They limited me in many ways, especially the food allergies. The fatigue was a big problem I had to contend with, but it was nothing like it is now. I just never considered myself as much less than normal, because I could still keep up with the big dogs if I pushed myself enough.

There's really no point to that observation, it was just a small "aha!" moment of mine. No moral to the story, sorry.

Mom and I talked for a good 3 hours the other day! It was really nice to connect with her again... she and I have both been busy, kind of overwhelmed with the stuff going on in our lives... She's got a ton going on, and I believe she's struggling with depression still, and definitely with fatigue. She has discovered that working out consistently and changing some of her eating habits is helping her with that, though, and I'm very glad to hear it.

I told her what happened with BJ, just an overview, but I did mention what was brought up about my having fibro because I left God, allegedly. She thought that I said "because I love God", and she was like, "Oh, I totally agree!"

I was shocked, because I thought she was agreeing with what I said, not what she heard. Rather than just shrug it off, I addressed it, saying, "Ouch, Mom! That is a hurtful statement. Do you really feel that way?"

Of course, she was confused, which led to clarification of what I had actually said, which led to her vehemently opposing the idea. She believes that, basically, I'm being attacked by Satan because I'm a threat. From there, she went on to give me this really, really affirming talk about how she's always felt that I am meant for something great, like I have a big destiny, that I was meant to live a big life.

She felt for a while that, in marrying and settling down with C here in this little town, I was basically settling. Now, though, she really feels that it is the best thing I could be doing, because it gives me the stability and support that I need to really flourish and blossom. She said that no matter where I go or what I do, I'm going to influence people and make an impact, and live a big life. She also pointed out that the fibro has only slowed me down, not stopped me. She said that nothing has or can stop me. Basically, she told me that I was an amazing person who has this incredible power to inspire others, no matter where I am or what I'm doing, and that the bad things that have happened to me really only serve to inspire others more, because they just can't get me down! It was, as I said before, very affirming. Very filling. Incredibly encouraging. I was happy. (Still am!)

When I told C about what Mom said, especially the part where she said that marrying C is the best thing I could be doing with my life, I could tell that it really pleased and affirmed him, too.

I shared with Mom how my perspective on my chronic illnesses is changing. It's much like how my perspective on being abused has shifted over the years. At first, when I was first coming to terms with it, it was devastating. I still have a tough time with it on some days, because the state of illness that I'm in has fundamentally altered my life in many ways. I didn't exactly want my life fundamentally altered, thankyouverymuch! As I've come to grips with it, though, I am starting to view it more through the lens of optimism.

Sure, it's been tough. Very tough. This last flare did not make me happy at all. Living life in constant, intense pain is wearing. I don't like it, and I wouldn't choose it. The sheer exhaustion that comes after doing basic daily tasks that I used to take for granted (even with the fatigue that I experienced previously limiting some activities) is incredibly frustrating, and I would only wish it upon my enemies.

That being said, I have gained so, so much from this experience. I have connected with communities of chronic illness survivors and made some really incredible new friends. We are developing a rich connection that wouldn't be possible if we didn't share something so intimate and difficult as chronic pain and frustrating health conditions. It's like the ladies in my support group-- we are all there for similar reasons, and we can bond because of our pain and our shared will to survive and conquer.

My relationship with C has been strengthened, I think. I know now beyond a shadow of a doubt that he will never waver in his commitment to me. His character and loyalty have been very much tested, and he has proven to be solid gold.

My desire to live an intentional, authentic life has been honed and sharpened. I only have so much energy, so where am I going to put it? What is important to me? My priorities have been refined.

This woman, Stacey Kramer, sums it up beautifully. She survived something incredible (no spoilers here! ^_^), but she can now see it as a gift. That's kind of how I see this debilitating, chronic illness now. It's a gift. A terrible, wonderful gift.

I may have days when I totally don't feel that way, and that's okay, because in the big, grand scheme of things, I really am grateful for the life that I'm living. I am blessed. I love my life, and I am very content. I can say in all honesty that I am the happiest, healthiest (yes, really!) and most authentic that I've ever been.

I talked about that today when I spoke at a domestic violence prevention training. I've survived a ton of crap, but I'm such an awesome person now... how can I not see it as a terrible, wonderful gift? Would I rather not have had to go through it? Hell yes! I would rather NOT have been abused, molested, neglected, and rejected. I would really prefer to live my life without pain hounding my every footstep. (Or foot-shuffle, as the case may be...)

But would I be the person that I am right now if I skipped all those things? Probably not. And I love who I am. I love the life I'm living.

So I choose acceptance. And I choose gratitude. And I choose to accept the gift and make the most of it, in all its terrible, wonderful complexity.

A lot has happened just in the past few days!

I was doing some research on fibro a few days ago, and learned quite a bit. This site has been a huge help in understanding my situation in layman's terms, and kinda coming to grips with the fact that, hey, I'm not the only one who goes through this! I mean, I knew that before, but it was more of an intellectual assent, rather than a realization that my struggles are shared by others. Granted, each one of us struggles uniquely, buuuuuut... I'm not as alone as I sometimes feel. (It seems that whenever I hear of others who have fibro, or meet them--which is a bit rarer-- it's either discouraging because they're totally disabled now despite their best efforts, or it doesn't really affect them and they don't understand why I have such a problem with it. Either way, I come away feeling kinda... mer. Oddly enough, the person I identify with most and draw the most courage and inspiration from are my friends with cancer!)

While researching J's gift, I ended up coming across a book that deals with sex when you've got a chronic illness. I, of course, don't seem to need much help in that area lol, but I did the "Look Inside!" feature, out of curiosity, and what I read blew me away. The section that I read was not about sex, really, but about the different "myths" about people with chronic illnesses. I ended up ordering the book, because I feel that it will help me better come to grips with my condition and not get so down on myself for being "compromised" and not being "enough".

I tell you, the Should Monster has a heyday with my illnesses, because when it whispers in my ear that I should be functioning at a higher level than I am... I agree! I want to be better than I am, and I find myself in dangerous territory. It is a constant battle to maintain hope and courage without crossing the line into Should-fueled functioning. I did overdo it yesterday, and I'm paying for it today. (I'm actually sitting in my rheumatologist's waiting room as I type this, and I'm going to tell him how badly I'm doing, and how rapidly the decline is going. I'm going to tell him that I literally cannot function without painkillers anymore, and even when I take them, it's to keep the pain at a 3 or 4 so that I can function. It doesn't take away the pain. It just makes it bearable.)

While in yoga last week, we chose an affirmation/intention to repeat as a mantra while we went through our movements that day, and I chose to repeat, "I am perfect health." I've been trying to maintain that as a mantra throughout the week, but I honestly felt like a hypocrite when I say that, because I'm not perfect health, and that's pretty obvious. So am I to deny reality in favor of wishful thinking? Then I got to thinking about what "perfect health" means, and I wonder if "perfect health" doesn't mean something different for every person? Like honoring your practice, finding your own personal, optimal balance... I dunno. Still figuring it out. But one intention that really worked for me, and that I've found coming back to me quite frequently, is one that says, "I am enough."

That's especially important for me to believe right now as I'm down so low health-wise. I mean, a One Thing A Day Rule? I could so easily run with that and kick myself into a depressive, discouraged spiral... but I won't. Because no matter where my health is at, no matter what my abilities to achieve are, I am simply enough. My being enough does not hinge on what I can or cannot do, it is because I simply  am. Even if I were in a vegetative state, dependent upon machines for the very breath in my lungs, I would still be enough. And you know what? My beloved agrees! He has proven that he will not leave my side, no matter how much or how little I can do, no matter how ill I feel, no matter that I can't take care of him in all the ways that I would like to, that I can't fulfill my dream ideal of "wife" or "partner". Nope, I am enough for him, simply because I am. He loves me, not my chores :) And that is an amazing, amazing truth to hold on to.

The same with my family. They've seen me through so many ups an downs, twists and turns... so many changes in my life and lifestyle while trying to be a good person and live a good life... but they've always just loved me, because I am enough. Whether I'm a SuperChristian or a fornicating heathen, whether I can take the dogs for a jog or have to depend on the Bling Chariot to get around, whether I cook amazing food or cook amazing food (Hehe...), they just love me, because I am enough. Me, I, just myself, I am enough. It doesn't matter what I can and cannot do. And I feel the same about each and every one of them. They are enough. They really are. So that's something that I've been hanging onto lately.

So, back to the fibro research! That was a divergence, but an important one that I needed to get out.

I realized after reading an article about fibro and pregnancy that C and I will have to be very intentional about starting a family. We can't just show up pregnant one day, because I will have to get off of all my meds prior to becoming pregnant, else they might adversely affect the baby. And we saw how that kind of thing goes with the colonoscopy, (very, very badly, if done abruptly) so I'll have to spend a good period of time weaning myself off of them, particularly the painkillers... And that means that I'll have to be in a decent place with my fibro to begin with, so right now is clearly not a good time to be considering a family! (Also, I'm not allowed to be pregnant during the massage therapy program, so it's rather impossible at this point...) So basically, we should start planning our pregnancy about a year in advance, to give me time to wean off of the meds and rely more heavily on alternative therapies to manage the pain and symptoms. It could definitely be a good thing, as I might be able to simply stay off of the meds afterward, which is my goal for some point in the future anyway... and I'll have to be off of them as long as I'm breastfeeding, of course. I did read that, though fibro does not adversely affect a pregnancy in the physical sense, it does aggravate the pregnancy symptoms that women typically experience, and I guess pregnant ladies are more prone to fibro flares. So it really could be a miserable time for me, and afterward could be pretty bad (because one of my triggers is lack of sleep, and we all know that newborns don't exactly let you lounge around in bed all day...), but I just have to decide whether it's worth it and if it's something that I really want. (I do.) C will have to step in and help balance out the domestic load for me, or we'll have to have someone come in and help for a while, like a live-in nanny or something, because I don't think that I can just hit the ground running like some moms can. It'll definitely be a planning scenario, that's for sure! No spontaneity here, lol. And while I'm on birth control for other reasons, I am very grateful for the fact that they let us decide when we want to have children. It is a distinct advantage, in our case.

And the last thing that I wanted to touch on before I get to my One Thing for today (putting away laundry and unpacking my suitcase-- I haven't gotten to it yet, because other One Things seemed to be more pressing!) is the wedding.

I was definitely disappointed to find that so many of the people that I wanted to share my big day with weren't able to come. You hear that saying about how the wedding is about the bride and groom, right? Well, for me that's not entirely true. For me, the day is about us, yes, but also about the people that I care about. That is a very important part of the occasion for me, and I felt like that was being ripped away from me, leaving me helpless and sad. Another part of it is that I have so many people that I love scattered so far and wide, and they've all impacted my life in such a huge way-- these people have helped to make me who I am today! So how can I have a celebration that is essentially about two people without honoring those who helped contribute to the forming of those two? It doesn't make sense to me. Many of these people have never met each other, and I feel like they should, because they're all puzzle pieces that make up the whole that is my heart. So I had really set a lot of hopes upon all my loved ones being there, I guess, and to not be able to do anything about them not coming, well... it was a bit tragic.

You can imagine my overwhelmed joy, gratitude, and utter shock when C (adopted mom) called me yesterday to inform me that they've been working behind the scenes and have decided that if I can give the money I'd set aside to help J travel to the wedding (which she won't be needing anymore, obviously) to them, then they will put together the rest that's needed so that H (one of my besties and my day-of coordinator) can drive down with K and J, as a wedding gift to me.

Let me repeat that in less convoluted terms.

C and D are gifting me with the presence of H, J, and K at my wedding. Sure, they're my day-of coordinator and my musicians, but they're more than that-- they're my friends, my sisters, my companions in the journey of life! They've been there for some of the hardest parts of my healing journey, and now they get to see all that hard work come to fruition as we celebrate my happy, healthy relationship. It would have been amazing for them to come without any problems, but for this gift to come from C and D makes it super, super meaningful. It's like a part of C and D will be there, because they sent my friends. They are the ambassadors of love from C and D, and I am profoundly humbled to realize that they love me that much. (And why? Because I am enough. ^_^) It literally brings tears to my eyes, because I don't know what to do with that kind of love, or even how to absorb it, really. It makes me want to just throw myself at them in service and somehow show them how grateful I am for them and how much I love them, too!

I am going to work my tail off to get this internet idea to become a reality. I know it's a possibility, but I am going to make it work! I need to be able to share this with them. My gift to them, I guess....

See how happy I am? It's because of you, what you taught me... the hope you gave me... I wouldn't have believed in happy, healthy marriages if it weren't for you two. I had no hope, but you changed all that. So see how happy we are? It's because of you. Thank you.

About 2 1/2 hours ago as C and I snuggled close together in anticipation of drifting off to sleep, he out of the blue announced, "You know, there's people out there that would kill to have you."

I asked why, and he responded, "Because you are a good woman."

That was all.

I responded, "Awwww, thank you!", and then we were quiet as we each began to doze.

:)

(I'm up because a.) I was having bad dreams--as usual--and wanted to give my brain and heart a break before heading back in, and b.) I was hungry. Midnight snack, anyone? Well, okay... 4 a.m. snack, anyone? Pacific Rose apples have been in season for a month or two now, and the WalMart near my house is the only one that carries them. But oh, how I love them...)