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.

Here's the summary of my weekend that I posted in various forums and places on Facebook this weekend:

"My home has been invaded by long-distance cleaning fairies. They came over to see me and Drogo and to thoroughly clean our house and give me a massage. Basically? I cried at the incredible outpouring of love and care and consideration, and now I'm sitting here eating grapes, listening to Def Leppard, watching them clean and dance and be silly, and watch my husband assist/fetch cleaning supplies/be shooed out from underfoot. (I'm not allowed to help.) feeling overwhelmed by love with Lacey and 2 others.

So they just left… but three friends of mine conspired with my husband to show up and clean my house for me. They are from several hours away and were going to be coming to town for other reasons, so they were going to come and see us *anyway* to say hello, so they figured they'd just take care of me while they were at it  One of them, who I actually met for the first time yesterday, is a licensed massage therapist that has worked with fibro patients previously, and she gave me a foot massage yesterday and a back massage today. They did the dishes that I've been too sick to do for three weeks (yeah, ALL my dishes have been dirty for three weeks-- gross!), and I didn't realize how dirty my house had actually gotten until they cleaned it! One of them took nearly an hour to soak and nitty gritty scrub my bathtub so I could soak in super duper cleanliness, bless her heart.

I did what I could to express my thanks (beyond crying when I comprehended what they were here for when they showed up yesterday, of course!) so I made them little gift baskets last night and wrote them thank you cards with their names in hand-lettered calligraphy on the front and stamped wax seals on the envelope flaps. (Wish I'd thought to take pictures. Oh well.) They were so pleased! You'd have thought I'd given them the moon  The lesson I learned from both giving and receiving this weekend is that while it pays to give, it also pays to receive graciously and with humility and pure gratitude. It meant a LOT to those girls to be able to do something so obviously meaningful for me, even with no apparent reward anywhere in their future beyond my and Drogo's gratitude."

Yes, I cried when they revealed their intent. And I TOTALLY guessed who was mysteriously coming over! Drogo was having a prolonged text conversation and sporadic phone calls and wouldn't tell me who was coming over and I was like, "Is it Lacey?" (she lives hours away and we rarely get to see her) and he was like, "Why would it be Lacey?" Literally minutes later a knock sounds at the door and in walks Lacey. I knew it!!!!! And when they told me that they were there to clean the house and that the new friend was there to massage me, too… I just broke down. I still burst into tears when I look around and see the cleanliness of my house. My heart just cannot hold that much love! Dani, Lacey's girlfriend, scrubbed and soaked and scrubbed and scrubbed my bathtub and shower until it sparkles and gleams because she knows that I soak in it a lot. 

See, I had sent out a plea on Facebook the other day, giving up my pride and just asking for help from my friends because I can't do this anymore. My pain levels are too high and I'm too sick and I just can't make life work all by myself anymore and I need help! I had dishes in the sink that had been there going on three weeks, and I was too weak to wash them. I was/am too weak to cook myself food, so I'm relying on easy-make foods like sandwiches, cereal, fruit, yogurt, certain veggies, etc. For various reasons, people were unable to come to my rescue, but these ladies began plotting and subsequently Facebook stalking me to make sure that no one else stepped in to do the job they intended to do, which no one did. So they bought all manner of cleaning supplies and brought grungy shirts and braved the dust and the mold and the kitty dander to which they are all allergic, and my home is so lovely and bright and inhabitable now, it just brings a smile to my face when I hobble through :)

I wanted to "pay it forward" somehow, desperately, to give something back somehow, so I put together little gift packages for each one of them that night after they left. (We went out to dinner together, too, so that was fun. Fortunately, due to some extra pain killers headed my way via an anonymous source the day before, I had my best day this entire month, no exaggeration, and I was able to be up and about with them in a halfheartedly normal manner.) They opened their gifts and read their cards while they were visiting with me this afternoon before they left to go home and I couldn't believe their heartfelt appreciation over something so small. I mean, they had given me something so incredibly heartwarming and valuable… I felt as though my return gesture of appreciation was so feeble and faltering in comparison! But it was not so to them, and that is what matters.

The amazing thing is that just the gratitude that I had for the gift they gave me of their time and effort and taking care of something that I was not capable of doing on my own was enough for them. That was all they expected to receive, and it was more than enough for them. It meant so much to me, what they did, maybe more than they will ever understand. To go from being an active achiever, someone who "gets things done" to being unable to do your own dishes is… well, it's humiliating. You begin to question your own worth as a person, as a wife. What is the point of even keeping me around, you wonder. Why does my husband want me here? All I can do is sleep and generate mess. But these girls… they came in and gave me a fresh start. I can maintain the cleanliness, to a degree. When I use a dish, I clean it right away so it doesn't build up. They laughed with me and cracked jokes and told stories and, most of all, reaffirmed my worth as a person. They wanted to spend time with me. They came all this way for me. They wanted to do this for me, of their own free will. They went out of their way and went to trouble for me because I am of value. It cheered me up to an unspeakable degree. It's hard to explain.

As a side note, I also found a bit of usefulness as a chronic illness advocate as well. The massage therapist, Meli, has worked with fibro patients in the past but doesn't know much about the illness itself. Her mother deals with many chronic illnesses but is, as Meli describes it, a hypochondriac. She is the negative stereotype of chronic illness patients embodied, the type where they say "it's all in your head" and it's kinda mostly true. That's unfortunate, but that's kind of the place where she has had to base her knowledge and dealings from, because that's all she really knows of chronic illness. During her time with me, she asked me questions and I answered as best I could, and of course she saw me deal with everyday life in my fashion. In addition to that I mentioned something about spoons, which lead to my reading her The Spoon Theory by Christine Miserandino, which is like the American Constitution for chronic illness patients lol.

Well what is really neat is that today she told me that I have really changed her perspective on chronic illness, enlightened her, so to speak, and I feel much like how I used to when I worked with The Healing Journey and did advocacy for abuse survivors. This illness has taken so very much from me, and I suppose you could even say it has ruined my life. At this point, that could be a very accurate statement, though in the future that may no longer apply. (Fingers crossed!) However, as with the negative things that stem from abuse, I've managed to turn those potential life-ruiners into positives by using them to inform and educate others and advocate for rights, change, research, healing; whatever is necessary at that time. I'm a badass, man. Life can't keep me down, no matter how hard it tries! I'm just super grateful that I have helped Meli to understand fibromyalgia and chronic illnesses better, because as a massage therapist and a health practitioner, she has the potential to affect many lives in the future. By affecting her point of view, I have theoretically changed dozens, if not more, of lives of people that I will probably never meet. Crazy, right? All by simply being my awesome self and being honest yet upbeat about my struggles and health problems.

Things are looking up. I may not necessarily be on the mend (if this month is any indication, because it has been hell), but I can still be a positive force in the world even from within my prison of pain and other various symptoms. Watch out, world!

On another, slightly more humorous/bitter note, I made something for my new pain doc. I think she'll get a kick out of it. We hit it off pretty well, and she seems to have a sense of humor much like mine, though I would not dare to pull this on any of my other doctors. They'd make me pay in one way or another… but I figure this will emphasize the truth of my statement that this month has been the. worst. month. of my fibro. ever. EVER. (ever.) (The date is set for my next appointment. I'm fairly confident that the pain won't be going anywhere before then, soooo…)

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.

So there's a lot of shiznit going down right now. Health problems, per the usual. I'm a bit concerned as to why my bones are so tender and why they burn. I don't think that's exactly a normal thing. My skin is pulling that "burning" trick to, and I don't like it, not to mention the chest pains and the random arm/leg/hand/foot numbness that's been hitting me. And the dizziness. That too.

Every time I take another plunge downward I comfort myself with the hopes that maybe this is just a temporary flare and I'm going to bounce back out of it and retain the level of "health" that I had a day/week/month ago. I think it's time to stop deluding myself. I've taken another very large step towards being completely disabled (yay pain!), and it's not gonna reverse itself without some medical intervention. Yes, still trying to figure all that out… I hope I don't end up a vegetable before that happens. My mom thinks I ought to be screened for various kinds of cancer. I can't say that I disagree with her.

Speaking of cancer… my friend is dying. My friend, the Chemo Princess, has been battling cancer for the past four years and is now going into hospice care. This is the woman that inspired me with the strength I needed to accept the newfound reality of being a fibromite somewhere over a year and a half ago. She is the one that has inspired me to find the beauty still abundant in my life and to sparkle, shine, and fight tooth and nail through these health problems. She's just so… uniquely herself. I've always been in awe of that aspect of her. I mean, I've known her since I was a kid. It was her wedding photos that made me want to get married in a meadow, which she and her husband did… in garb, I might add. He's a really cool, quirky guy too; an artist. He and his junk/jug band, Deep Fried Pickle Project, have sung some really funny songs. My favorite is "Don't Drink The Juice At The Bottom Of The Pickle Jar".

Anyway, it's just a hard reality to know that someone so awesome, who has contributed so much light, love, and joy into the world will soon be silenced. Like, really? Here we go again with that "why do bad things happen to good people" thing. It just pisses me off that such a wonderful woman and family are soon to be torn apart-- and have suffered so much already!-- and scum like G are sitting safe and sound with nary a problem. (Well, being in prison is probably a problem for him, but he totally deserves that one.)

Ugh. I have to go to sleep. I was trying to wait until the pain killer kicked in, but I really just need to sleep. I've got a doctor's appointment in a few hours, and C is coming with me since he has to run some errands anyway. Tomorrow, if I'm up to it, I plan to try to contact the right people to get a disability claim going. Almost 26, and filing for disability. What a life, eh?

Nah, it's good, it's good… I like being alive. I like it even more when I think of my dying friend, and wonder what she wouldn't give to have more time with her family. It's thinking of stuff like that that makes it so hard for me to end it on my terms. Like, there are people out there that would give anything for more time… so how can I throw mine away? It wouldn't be fair. It wouldn't be right.

This video I watched this morning perfectly illustrates what I was talking about yesterday, about meeting myself and not defining my worth or capabilities by my appearance. It's definitely, definitely worth a watch.

I'm going to be doing something a little different here for a while. I don't know how long it will last, and I will probably continue with my regular blogging habits in the midst of this (because girl gotta vent, you know what I'm sayin?), but I think it will be a fun little diversion. I felt the urge to pull out my old journals and scrapbooks last night and start browsing through them, just to see how different my life is now and, more importantly, how much I've grown and healed in my thoughts and in my heart. (Hint: it's a lot!) So what I'll be doing is posting entries from my paper journals that I kept before I started blogging, probably in no particular chronological order, just as they speak to me. I'm going to call this endeavor Blast From The Past. I hope you enjoy this little bit of time capsuley goodness. I think I will.

Okay, yes, discouraged and worn down and tuckered out though I may be, I do have to share a very exciting and inspirational story.

About a week and a half ago, I was invited for the second time to speak to a classroom of high risk teens who are going through the program my agency offers at a local charter high school. I feel totally comfortable there because I went to one of the schools for druggies, dropouts, and pregnant teens (while being none of those things) here in this town and absolutely adored it. So I went and told my story of how I was abused, abandoned and neglected throughout my life, and the dysfunction I endured. I also told the story of how I put one of my abusers behind bars, how I learned to forgive, and about self-hatred, self-love, and boundaries.

I saw a lot of nodding heads amidst the laughter while I was talking, and I know that a lot of what I said resonated very personally with the kids there, who live lives similar to mine. While in the office today, we got a phone call from the teacher of the class, one of our peer support specialists, and she told us that one of her students disclosed to her. The girl shared that one of her family members had been sexually molesting her for a long time, and while he had stopped he was still very involved in her life. She hadn't ever told anyone, but hearing my story prompted her to speak up and get help. Her words were, "if that Cassie girl can make it, then so can I."

Holy crap, y'all.

I mean, just let that sink in. By spending an hour with these kids and just telling the story of what I've gone through and what I've done with my life (counseling; stable emotionally and mentally--mostly, hah!; a stable, healthy, and happy marriage; a job that I love, am good at, and am passionate about; setting and maintaining healthy boundaries in all aspects of my life), I literally changed the course of someone's life. She is gonna do so much better... her self-worth is going to change, the way she interacts with those around her, the way she goes after her dreams and goals... She will be much less likely to continue the cycle of abuse by getting into a bad relationship or becoming an abuser herself. She will advocate (in big or small ways) for those she sees being victimized in her life, because that's just what happens when you learn about this stuff and put it into practice in your life. It's a natural by-product.

This girl is going to start coming to the teen support group, which I just so happen to be getting re-involved in very soon. That means that I'll get to work closely with this girl who saw something in my life that gave her hope that her life could be different and better too. What a privilege.

I love my job.

In just an hour and a half I begin my first bout of testing for the cause of these twitchies.

I'm a little nervous, I must confess, as C shared with me that the procedure is, well, painful. His mom went through it. How painful it is exactly, he couldn't say, because he's not the one that went through it, and he claims that it's possible that his mom was being a pansy. Problem is... I'm a pansy, too! lol

I figured it might be best not to take pain killers before the test, so that the readings will be accurate, but I was hurting enough that I needed to. The thing with the pain meds is that they don't get rid of the pain, which is highly annoying. They just take it down to (mostly) bearable levels, if I'm lucky. But my stomach hurts a lot with all of this acetaminophen I've been ingesting. I suppose it's a worthwhile tradeoff. Sorta.

Also...

I love the community humor that chronic illness patients have developed. I mean, really... if you can't laugh at this stuff, you'll end up crying about it. And I hate to be droning on about my pain and symptoms all of the time, but... you talk about what's familiar and constant, and this is my life now. C and I were joking about who was going to die first last night. He says that although women generally live longer, with all this stuff wrong with me I've probably lost about 5 years, so that puts us on even footing. He actually thinks he'll come out ahead by a year or two. Could be. I'd rather die first, so I don't have to fight through the grief of losing my mate.

I asked him yesterday about suicide, my suicide. He said that, if I succeeded he'd be very upset, and probably a little angry with me. If I didn't succeed, he'd be very upset and he'd have me committed so that I couldn't hurt myself again. I was feigning offense that he would lock me away and I wouldn't see him anymore, but he assured me that he'd come visit. He also told me that killing myself, or trying, would never ever be doing him a favor. It would never be a good thing for him. I smiled at the assurance that he values my presence in his life, and I assured him that although the thought comes up in moments of desperation, it's never a serious option for me. It's not.

In the depths of my emotional and mental agony and despair, I longed for rest, for a respite from the hurricane of dark forces that ripped through my soul. Now, in the grip of relentless pain, I long for rest and a respite from the endless grinding and battering of burning, choking torment. It's torture, but there is no inquisitioner and no answer that I could give to end the agony.

Despite all that, though... despite the darkness that still rises from time to time to swallow me whole... despite the flames of chronic illness that lap at my naked, defenseless body... there is a solid, shining light that forms a bridge above the darkness, above the flames... and I can crawl to safety. And if I don't have the strength to crawl, at least I can lie on its solid surface and know that the golden pathway remains and will remain. The bridge of light is the meaning and satisfaction that I have found in my life. It is made up of my husband, my work with the Healing Journey, my friends and support system, the simple pleasures of food and tea and good books, the security of my place within my family, and the warm glow of unconditional acceptance from those who have come to love me. It is a bridge that saves me, day after day... a platform to rest upon as I drag myself from the cold burning depths of despair and frustration.

As I contemplate this odd mix of pain and darkness and light and love that is my life, I find myself profoundly grateful and humbled. I have never before in my life had a hope like this to cling to, to save me... and I cherish it. The darkness before was always so chaotic, and I could see no respite but a rock or two to cling to in the midst of the storms. Never before have I had a way out.

I know the pain isn't going anywhere. When I first started getting sick, and for many months afterward, I held on to the hope that this was a passing thing... that it would peak and then recede. I know now, and have accepted, that the pain isn't going anywhere. This is my life now. I fight to diminish it, to overcome it, and to find treatments for what is wrong with me but... this is my future. I don't expect anything else. While that may be considered glum and defeatist by some, I see it as freeing. No longer expending my energy on false hopes, I can focus on walking my shining bridge and beating back the flames that threaten to consume me.

It's an exhausting battle. I won't lie. The darkness still wraps tendrils around me and whispers dark doubts in my mind. But I have something to hang on to now... something that will always pull me back out. And that's why suicide is never really an option.

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. ^_^)

I've been feeling better since Wednesday. Stronger. More able to handle the pain, and even to push myself and feel my muscles burn with exertion. It's been a while since I dared to do anything like that. It would have sent me straight to bed in spasms of muscle agony and the groaning torment of severe "fibro flu". Who wants that? Not I.

I did a lot (to me) of packing and moving this weekend. I picked up boxes and carried them out to my car and into the new house. I scrubbed shelves and mopped floors. I wiped down bathtubs and swept the whole house. I hung shower curtains and ate sushi cross-legged on the bare tile floor.

It was a good weekend. I enjoyed feeling stronger than I have in... who can remember how long? When your days are filled with pain and sickness, they tend to blur together. You forget the last time you had a good day, unless it was extraordinarily memorable. I remember my wedding day, but that was not a good day, health wise. It was actually a very bad day, but I enjoyed it nonetheless.

So that makes me think that the acupuncture is actually, finally helping. I feel like I've been gradually slipping down a flight of stairs, and each step is a lower level of functioning than the last. But, at last, I feel like I've taken a step back up that flight of stairs.

Granted, the fatigue was a bit of a bitch today, but I fought it. I did good, but today, combined with the weekend, may have been a bit much. I think I got over-excited about feeling better, 'cause now I'm feeling pretty gross. Not much in the way of pain today, actually. Surprisingly. I don't really know what to do with myself when I'm not actively in the throes of affliction, so I was at a bit of a loss...

While I was waiting in the bank to change my name last week, I picked up a National Parks magazine and read an interesting article about a woman and her husband who started as seasonal Park workers in Glacier. The article was about how they worked Denali for a season or two as seasonal employees, but then they chose to stay there year-round, and how that experience has changed them for the better. It was a good, interesting story. I'd like to see if I can find it online somewhere... Oh! Found it!

Here. Read this. It's great.

Anyway, it really struck a chord with me, as ever since I started really talking to D I've had this intense desire to visit Alaska... maybe even stay for a while. I can't now, 'cause of the dumb fibro (cold affects me very, very negatively in that regard)... and that is what got me thinking, and grieving.

I'm grieving for the Life That Could Have Been.

If I were not sick, what kind of life would I have led?

Realistically, my health has been compromised almost my whole life. I've had fibromyalgia since I was 9, at least, and the fatigue and other things that accompany it really impacted me growing up. I never had much physical stamina, not to mention the exercise induced asthma that I inherited from my biological dad. (Thanks, T!) Maybe I had the thyroid and adrenal issues way back then, too. I don't know. All I know is that the older I've gotten, the sicker I've gotten.

But if I were healthy, what kind of life would I have chosen?

I used to love to roam the desert and go hiking as a kid. On Sabbath afternoons I'd be over at the D's house, and after lunch we'd decide to go for a hike in the desert. I'd borrow some of their son's clothes and shoes, and we'd be off on an adventure. J and I would leave the adults behind and skip up the mountains like little goats-- he was always ahead of me, because of the stamina/asthma thing, but I trucked right along. When I lived in ID, I had a fierce longing to work for the Forest Service, and I was SO jealous when K got the opportunity.

If I had not been sick, that is the kind of life I would have chosen for myself. I would have joined up with the Forest Service, or the National Parks, clearing trails or patrolling the backwoods or whatever was necessary. I'd cross-country ski through the woods in winter, and I'd hike the Grand Canyon from rim to rim. I'd camp out at Denali, and I'd hike McKinley at least once. I'd sleep under the stars at the Arches, and I'd walk the Appalachian Trail, a pack on my back and a dog at my side.

Would I have a husband by my side as well? I don't know. I do know that, were I living the life that my soul dreams of, I would have married someone very different from C, someone more like B or D, or even W, my sister's fiance.

But the thing is... I was born into this broken body, a body that limits me in so many ways... and I will never get to live that life. I had a taste of it, a beautiful, refreshing taste when I lived up north. But now... now I celebrate walking around the block. My body does not do the things that I desperately, sincerely wish that it would and could. And I must accept the fact that it may never do those things. Truly, it will never do all the things that I wish it could, and that's okay. I know that I am more "frail" than some of the rugged individuals out there (I'm looking at you, Miss R, and your man J!), but I still want to work up to doing what I can.

I want to go backpacking again. I want to go camping again.

I want to do those things without fear of falling wretchedly, desperately ill as a consequence of enjoying myself, of pushing myself. It's ironic that physical exertion can make me so, so sick... because getting exercise is supposed to be so super healthy for you! I feel like a leper sometimes. A misunderstood leper.

And so I grieve. I grieve the Life That Could Have Been, the life that would have been, had I been born into a healthy body.

Anyone reading this with a body that follows your commands and obeys your wishes without committing mutiny... I hope that you walk away from this grateful. I mean it. How often do we think about the little things that our body does for us, without even thinking? Washing the dishes. Bending down to pick toys up off of the floor. Rising from a seated position. Chewing food.

These are things that, some days, are difficult or nigh impossible for me to do. Some of my chronic illness friends find these things absolutely impossible on a regular basis. I'm better off than a lot of them, and it's humbling.

If you have health, don't take it for granted. I certainly don't, not anymore. And yes, while I am grieving, I am also celebrating. I am celebrating the health that I have, whether I feel awful or not. I have safe food to eat, I have medicines to take, I have health treatments that are paid for and not putting me in the poor house or driving me to extreme measures to pay for. I have a supportive network of friends and family that both believe me and believe in me. I have a wonderful husband who takes care of me in a zillion little ways, and who wanted to marry me despite the trip down the stairs I've been taking. He has wanted to marry me for years and years... and his love did not dim a whit while I was off doing what I thought was best for both of us. How many people can say that?

Sure, it's rocky. Sure, I'm in pain. Sure, I'm fighting hard against a body that is literally trying to attack and kill itself. But man... I have so much to celebrate, so much to be incredibly grateful for. And it's those tough things that make me appreciate the nice things so. much. For example... I have a new house! And I was able to clean it!! All by myself!!!

I love my life. So while I do grieve the Life That Could Have Been, I don't know if I could or would ever give up the Life That Is. It's just too rich and too wonderful, and I love all the pieces of it... even the hard ones.

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?)

Also, I just HAD to share this. C showed it to me tonight, after telling me about it the other day, and... wow. I'm blown away. And so excited that I'm taking yoga! But really... just because the medical professionals tell you that it must be a certain way due to the limitations you find yourself with, it's not necessarily true!

I believe that I can live a full, happy life free of pain and fatigue. I believe that I can find the balance that my body needs. It may not happen today, tomorrow, or anytime soon, but I believe it will happen. It may involve medicine and it may involve natural remedies. I'm not poo-pooing anything. I will find what is right for me and I will rock that bidness (say it phonetically), and, most importantly... I will never, ever give up! (Okay, sure, I might have an off day here and there. But I still won't give up! ^_^)

I believe in myself!

I'm working on the HJ's newsletter, and I interviewed a survivor for an article today. I thought I'd share the finished article, mostly because she reminded me so much of Mom... not her personality, but her story, her decisions, how she fought tooth and nail for her kids and got them! She inspires me. Totally.

“Our greatest glory is not in never falling but in rising every time we fall.” -Confucius-

Statistics show that a woman in an abusive relationship will leave her partner an average of seven times before she leaves for good. For one domestic violence survivor “A”, it didn’t take seven times for her to leave for good, but it did take an extraordinary set of circumstances to open her eyes to what was truly going on.

Like many abusers, her husband did not start out overtly manipulative and controlling. After their son was born, however, he began to control her more and more closely, until it just became too much of a hassle to try to go out anywhere. Even after financial circumstances forced her to get a job in order to make ends meet, he obsessively monitored her whereabouts and timing. (Note that this is a common trait in abusive relationships. Isolation and control are some of the first red flags.)

She left once, in an attempt to change the relationship and get him to work on the issues she knew were there, but a lack of finances and support forced her back. It was a strategic move on her part, a way to get on her feet and be able to maintain the separation for good next time, but it was also because she lacked the knowledge on how to get out and stay out.

A year and a half later, she was still there. She still intended to leave, and she was working and saving money, but one thing after another came up... until her son was admitted into the hospital for a fractured skull. Though the relationship was definitely abusive, physical violence was a line that her ex-husband never dared to cross, and to this day the origin of the fracture is uncertain. CPS got involved, and the children were taken away.

It was a few days after this incident and being interrogated by police that a CPS caseworker called “A” into her office. She explained that this was a domestic violence situation, even though her husband had never hit her. The caseworker informed her that if she stayed with him, she was more than likely not going to get her children back, and she directed through the initial steps for leaving the relationship. “A” followed those steps, appearing in court to get a restraining order, moving into a safe house, and contacting the Sheriff’s Department and CPS when her husband violated the restraining order a month later.

In January 2012, she began attending the weekly domestic violence peer support groups offered by The Healing Journey. “From there”, she says, “it has been one progress after another.” There have still been setbacks and frustrations, as she shares, but the road has led ever forward. 

“It’s been rough. Many times it felt like a black hole, most days it felt like it was never going to get better. I definitely feel stronger now. The trials that I’ve had to go through with just that weekly visit has been a relief. It’s allowed me to brainstorm and bounce ideas off of others. Even if I felt it was doom and gloom and nothing getting better, I go to group and leave feeling refreshed, as odd as it sounds. It’s comforting to go into group knowing that no matter how bad my week has been, I’ll talk about it and it’ll be okay, then I’ll sit down and find a way to approach it and tackle the situation. It’s given me a lot of confidence I didn’t have when I started. I was an absolute train wreck! ... It helped give me the fight that I needed to.”

Fighting for the return of her children has been her focus, her own personal war. Aided by her support network and her assigned case workers, the war has been won! “A” and her children have been reunited and are rebuilding their family on solid, healthy ground. “A” continues to come to domestic violence support meetings, offering a valuable perspective on how this experience has changed her outlook on life.

“It’s hard to go from having a life and having your kids and having something to absolutely nothing. When you do have absolutely nothing, you treasure every single thing you have after that.”

So in Intro to Essential Sciences (which I've affectionately nicknamed A&P, even though it's technically not), we're covering the central nervous system. If you know anything at all about me, you'll know that I'm in hog heaven!

It's amazing how the different parts of the brain connect and correlate and affect different aspects of bodily function. It truly is. When we were going over the basic building blocks of the body, I marveled at the intricacy found in function, and during the section on pain I was astounded by the efficiency and grace of our body's reigning systems. Fabulous. That's what we are. Every single one of us. Just by virtue of the way our cells work.

So anyway, I developed this hypothesis/theory during class last night. There are three major divisions of the brain; the cerebrum, which is the largest and what you typically think of when you hear the word "brain", the cerebellum, which is the second-largest and looks kind of like a low-hanging addition off the back, and the brain stem, considered to be the "ancient brain" and is in control of the centers for vital survival functions and reflexes.

The brain stem houses a few interesting little segments, such as the thalamus, the hypothalamus, and the pineal body. The hypothalamus is what I'm most concerned with at this point. This part of the brain does stuff like regulate blood pressure, peristalsis (you know, the muscle contractions that move your food all the way from your esophagus to your anal sphincter, the thing that I have so much trouble with!), appetite/satiety, pleasure, temperature, etc. In addition to all that, the hypothalamus is also the "crossover" to the endocrine system, meaning that it is in direct communication with the pituitary gland. The pituitary gland, in turn, controls the adrenals, the thyroid, the ovaries, the testes, etc.

So! Here's my theory. I've been wondering about onset, and I've been wondering about the difficulties that I have that I'm not sure can be ascribed to simple hypothyroidism or food allergies, etc. I've especially been wondering about onset, and why I got so sick so fast for no apparent reason. What if, in the accident of 2006 (see photo at the bottom of the post), when I got my head banged around so much and got that concussion (which always damages the brain, even if it's slight), I somehow damaged my brain stem/hypothalamus and that in turn caused my pituitary gland/endocrine system to go haywire, inducing hypothyroidism and adrenal insufficiency, in turn causing my body to attack itself (because, as an abuse survivor I'm already predisposed to autoimmune diseases) and thus making me very sick a year, year and a half later?

Seriously. I think it makes sense. Brain damage may also help to explain my vision and balance problems.

I know it sounds a little extreme... brain damage. Hah. I sound like a hypochondriac.

But, really, I think it's a viable hypothesis. The way to tell would be to get thee to a neurologist, I think... but I don't have the money for that at this point! When I find a good doctor, though, I'll be sure to bring this up.

Anything for an answer, right? :)

Here's a couple of pics of the accident. You be the judge. I mean, after all... it did cause me to go blind for a while.

 

Mom, picking our belongings out of the van a week or so later... 

 

BJ, helping to collect our belongings

 

The back of my head, where it was the worst-- the morning after (it was all squooshy and stuff, like a pocket of warm jello. Pretty cool)

 A few days into the hospital rigamarole, my head and neck started swelling. Probably not good.

  

Swollen head! Can you tell?

So anyway, we'll be celebrating our "anniversary" next month. I just wonder if I escaped as unscathed as I had previously thought?

I just haven't had the gumption to get on here and hammer out my problems the wordy way.

Monday-- I was sick. Again. I did some stuff that I can't remember (dishes mostly, I think), but pretty much just wrapped myself up in a blanket and watched Glee with S and D. Turns out I'm hooked. (I'd been avoiding it since Mom and J got hooked-- a fairly easy feat, since I don't watch tv.) But now S's Netflix account has run out, and none of us have the money to renew it, so I guess that's that. Got somewhere between three and five hours of sleep. Yuck.

Tuesday-- Worked for E in the morning, which was good. Group was tough, but that's the way it goes sometimes. I'll be working on revamping our sessions a bit, and cobbling together a legitimate curriculum, which I'm stoked about. L was over and we hung out, but I conked out early, due to the previous night's lack of sleep.

Wednesday-- The day R was allowed to come home again. Haven't heard word yet. Wound up in the emergency room that morning, since the discomfort and random symptoms I'd been experiencing for who knows how long coalesced into a rather serious bladder infection. At least, I assumed it was serious when my urine was bloody. Got that taken care of just in time to jet off to a speaking presentation with E, after which we found out that the HJ got a partly unexpected grant for quite a chunk of change, and do you know what that means?! Not only does it mean we get to open up more groups (hurrah!), but it means that yours truly has a job! And not just any job, oh no. It means that E's going to stick me as the Director of the teen division. A director, y'all! You may kiss my hand now. (As my friend used to say, "Kiss my hand and call me Sensai.") So that means added responsibility, but that also means that I can call a cease-fire on the desperate job hunt.

School starts in two weeks, and I'll have the HJ as my part time job. I'm stoked, because that means that I won't have to divide my attentions between work, school, and volunteering like I thought I would. This means that I can throw way more energy into HJ than I thought I'd be able to. This means that I get to run another teen group in a different location.

That in mind, I was thinking after the meeting (it was a United Way meeting that totally inspired me to give back and get involved and help people) about how I'm getting involved in these various things... but I really came away from that meeting lit up about the possibilities. I've always wanted to make a mark on the world, to change it for the better somehow... to "change the world", as cliche as that sounds. It was on Wednesday, though, that I realized that this is the city I have chosen to make my home, and that I can change this city for the better. I can make a difference. I can literally make Y a better place to live. Do you know how cool that is?! These seemingly random involvements suddenly connected in my mind like a series of dots that paint a picture of a positive impact on my community... by impacting individuals.

So that was cool.

Thursday-- took my first "date" with C and we headed to the beach. We got there around 1-something, spent a few hours walking through a favored (rather touristy) location of mine, and then we headed to the beach for a few hours. C didn't think to bring shorts or sandals for some reason, so he was the only fully clothed person on the beach-- jeans and work boots. It was rather funny, or so I thought. I was able to stretch out on the sand and read (and get a little sunburnt), listen to the waves, and dive headfirst into the water (at C's encouragement). It fed my spirit, truly.

My affirmation from Wednesday's group was, "The most important things in life aren't things."

While I was in the water, I really felt that sink in deeply. Memories kept rushing at me as I walked along the water's edge and bobbed within the waves. The memories were all of happy times I'd spent with family and various groups of people there in that very city, on those very beaches. I realized that the experiences I'm stockpiling, the people I'm connecting and building relationships with, are so much more valuable than anything I could ever buy.

C was a little grumpy, but he got a nap in on the beach and on the drive home, so he picked up after that.

I got home and wanted to sleep, but I wanted to get a few licks in on some HJ stuff I'm doing, and then I wanted to blog... and now look what time it is!

Tomorrow I intend to go apply for food stamps and med care (so I don't have to keep asking R for money!), and I'll be taking the twins door to door.

Very good. Embrace the imperfection, and let it lead you on a journey of discovery, into greater and higher realizations of what you can create. Love it.