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.

What do you do, when everything comes crashing down around your ears? I don't mean literally, of course, although I had my doubts while Corey was up in the "attic" crawlspace to install the ceiling fan we bought for our bedroom (go tax returns, yeah!) and trying not to fall through the ceiling.

I dunno. Sometimes it all just kinda hits me, you know what I mean?

What do you do when you hate every second of your disease, but it's so imprisoning that you can never forget that you have it for any of those hated seconds? I'm talking Ehler's-Danlos here, although Addison's has been giving me a run for my money lately too, trying to manage my adrenal glands manually. Always a tough challenge for me, even more so lately.

So do you just hate your life, then, because the two are so inseparable? Usually I try to wrap my world in beauty, to find it, create it, whatever I have to do. Sometimes, though, the cold stones that weigh in the pit of my stomach overcome me and all I can see, all I can feel, is the destruction of the life that I had, the life that we planned, the future of my personal dreams and our mutual hopes. And it's hard, really hard, to not hate your life when every moment is agony and you know that there's no cure, there's no hope, there's no remission, and it keeps getting worse. I try not to think about what it'll be like in a year, 3 years, 25 years, but when I'm huddled on the bed and sobbing into my husband's pillow while trying not to move because it hurts, I think about those things. I think about them, and I am afraid.

I don't want to do this. The weight of the agony that waits for me is too heavy a load for me to bear. It's scary, but more than that I hate hate hate HATE what this agony has done to me personally, to my husband, and to our relationship. I hate what it's going to do. I appreciate, in a circumspect way, how it's going to make us better people and probably already has--as is the nature of suffering--but that thought remains rather subdued.

When he came to bed tonight and I lay next to him, trying to relax and mayyyyyybe get some sleep (no sleep to be had this night, alas), I eventually spoke up. (Choked with tears, of course.)

"I'm sorry for being so sick. I hate every second of it. I think I hate it more than you do. I hate what it's done to our life."

He didn't respond.

Not a word.

In my time of desperate emotional need, he stayed completely and 100% silent…

…except for the soft and sudden rustle of bedsheets as his foot sought out my two feet, entwining them beneath his leg and covering them with his own as he rubbed his instep against the top of my foot a few times.

All I could do was blink away the tears, sigh softly, and let this renewed sense of peace settle deep into the center of me where I will lock it away tightly and hold on to the hope that it's going to be okay… somehow. Three feet of peace--my two feet and his comforting one-- to remind me so.

"I love you."

"I love you too, lady."

I really need to be drifting off to la-la-land here in a few minutes, as I've got to get up early. Why? Becauuuuuuuse.... tomorrow is The Appointment with The Neurologists. You know, the one where we go over test results and I maybe get some answers?

I feel all sorts of ways about this appointment. On one hand, I know that even if all of the tests come back normal and show us absolutely nothing in the way of what's wrong with me, that means that we can rule things out, and that in and of itself is progress. On the other hand, I am both hoping and afraid that some of the tests will show something and we'll begin to have a clue as to what ails me. I'm hoping to maybe start getting headway in treating the root cause of this ridiculous pain (and all of the other fun stuff that comes with it). I'm hoping that the doctors will be able to get me some pain management (i.e. pain meds) that are more effective than what I've got now. I'm hoping for answers, clues, hints even. Anything.

But I also don't dare get my hopes up. (Despite my best efforts, I find myself hoping for things, but I keep telling myself to stop it!) I really hate it when my hope are crushed and I am devastated. I'm afraid that nothing conclusive will come of this, that I'll still be shrouded in mystery. I'm afraid that they will refuse to help me treat my pain. I'm afraid that I've got something terrible, something degenerative, something debilitating. I'm afraid that I'm only going to get worse. I'm afraid that there's nothing we can do to help me.

I mean, there are so many "what ifs". What if it's degenerative? What if the pain never goes away? What if I can't ever have kids? Hell... what if I'm dying? Some people might think that's being a bit dramatic, but considering how rapidly I've gone downhill, how bad it's gotten in such a short amount of time... it wouldn't surprise me as much as it might someone else. My mom even said this last trip that I looked like a chemotherapy patient-- pale, weak, dark circles all around my eyes from the pain and sleep problems... She also said that she fears this is the last time she's going to see me. I can't travel long distances anymore without great difficulty, and she doesn't have the money to come out my way, so... unless I get better, we won't be seeing each other for a long time.

Do you know how sobering and/or terrifying it is to have your mother look into your eyes and say, "I fear that this is the last time I'm going to see you"? Let me tell you, it's pretty damn scary. It made me take a hard look at myself through someone else's eyes and realize... yeah. I'm pretty sick. I've gotten good at denying how sick I am in my mind... maybe to justify myself to others, to avoid undue sympathy, to keep myself from plunging into a morass of despair? I'm like, "I'm fine yo! Um... Can you help me to the bathroom?" Hah.

Anyway, I need to rest. The less sleep I get, the harder this trip will be. C's dad is taking me, which is very nice of him. We'll be taking C's truck since it gets WAY better gas mileage than R's big old beast of a truck. (Funny... both of my dads are named R now. Go figure!) C will have to use R's truck, as my car is broken and in the shop. (We're going to have to get a new one. This has been about a year in coming, but it's still not a pleasant prospect. At least I hardly drive now, so all I need is a little beater to get me to work once or twice a week and to the store if I need it. No big. It just has to have proper hvac and be an automatic.)

I asked C to cuddle me tonight, and we talked over some of my fears. He told me it's okay to be nervous, and that I'm right in thinking about it as "no matter what happens, it'll be progress". Oh, guess what? I went to my grandparents this afternoon for a small Christmas (opening presents and watching a Christmas movie), and on the ride there Grampa and I were talking about stuff. C came up, as I was talking about how incredibly impressed I am with him as a person and how he's adapted to life with my illness and how well he takes care of me and loves on me. I mean, I knew he was a great guy before I married him, but he's really blown my expectations out of the water and shown himself to be a spectacular specimen of human being. Just an all around wonderful man and husband. Anyway, I was saying things like that and Grampa jumped in with the comment that he did have his doubts when we got married (C being a nonbeliever and all that), but C has really impressed him too and he thinks that my heart was really telling me the right thing when I decided to marry C. To hear that made my heart sing and burst with pride. I love that man. He's amazing. And he has the greatest mustache ever. Even Grampa is jealous! He said so himself during one of the 3 or 4 times he complimented C's mustache throughout the afternoon. Men and their facial hair, I swear...

I asked C to tell me some optimistic stuff about the future, to allay my nervousness and all. He looked at me, blankly amused (he's terrible at off the cuff stuff, especially optimistic or complimentary stuff), so I whispered a few prompts to him. "Tell me it's all going to be okay... and that no matter what happens you'll be here... and we're gonna be alright..." He then kinda stuttered out awkwardly, "I'll be here..." (long pause) "...for you." Then we both laughed because it was so awful. I'm grinning now even as I recount it. He's so funny.

Alright. To bed with me, while I still have a smile on my face. Hopefully I don't stew over the "what ifs" too much while drifting off to sleep. I'll try not to. But oh man.... so nervous!

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.)

I found my Never Shout Never cd, and I've been listening to it today. Isn't it funny how a certain cd or song can evoke such a strong memory of a certain time, or a set of emotions? I first heard the cd when I was home this last Christmas visiting the folks, and I listened to it incessantly the whole time I was there and for the next month or two.

What comes to mind is bravery. My friend L had just begun another very aggressive battle against her cancer, and Mom and I really got into the Bring the Bling thing to encourage her. I drew a lot of inspiration from her and her fight, because I had just been diagnosed with fibro the month before, and I was still reeling, trying to figure out my new life and this addition to my identity... not to mention struggling with intense pain before I ever got painkillers.

I was full of bravado, hope, and optimism, despite my fear, uncertainty, and pain... and that's what comes up when I listen to this cd, especially this song.

Incessant pain has a way of wearing you down over time. I was brave then, but I hadn't lived with this for as long. I'm still brave, but in a different kind of way. The fresh young soldier is filled with vigorous bravado; the weathered veteran has a worn, hardened bravery. Neither are wrong, but they are very different.

I'm still trying to figure out how to live with the pain and the host of other symptoms that accompany it. It's a day by day process, and sometimes I don't want to do it anymore... like today. I wanted to give up, get out somehow... but the only way out when pain is your life is to quit life altogether, and while I may be desperate enough to contemplate it, I'm not desperate enough to carry through. There is too much that I love holding me here. Too many people that I love, to be specific. If I weren't selfishly hanging around to take in all that love, I could still say that I wouldn't want to betray their love and trust by leaving of my own volition. Either way, I've gotta keep going, if only for the sake of the love and support that is showered upon me on a regular basis.

I spent a good portion of this morning crying on the couch, defeated and discouraged. After some time, I crawled back into bed with C, who partially woke up and wrapped me in a sleepy embrace. He just held me for a very long time, and it was what I needed to calm down and stop sobbing silently. I realized (again) that he does want me here, he does love me... I am valuable to him, even in my current condition.

So, tomorrow is a new day. Here's hoping I'm brave enough to face it with a smile on my face.

Today, I told someone that I was disabled as a way to summarize my situation. It was easier, at the time, but dear God what it did to my heart...

I've also been toying with the idea of getting one of those handicapped parking tags.

Fuuuuuuuuuuuuuuuuuuuuuuuu....

But then, just when you start to get really overwhelmed by the reality of your new life (read: redefining "success" and "productivity" to really, really low levels, which sucks!)... something positive gets thrown your way.

This blog post about loving yourself (written by a woman with chronic illnesses and pain), or more specifically, loving yourself more than you hate your disease and pain, pretty much kicked my butt. It was awesome and super inspiring, don't get me wrong, but I cried when I read the "Redefine Your Life" section... mostly because I was so sad that a.) I understand everything she says in that section and have experienced it firsthand, and b.) that my life has been reduced to "Yaaaaay! I showered today!"

Really?

Really?

I kinda just want to crawl in a hole and die because of that.

And the thing is that, no matter how hard I try (and I am trying), I can't do any better, because it's my best.

This is my best now.

I am having a hard time accepting this. A very, very hard time.

However... I then found a link from there to this non-profit community called Chronically Awesome.

This is what their "How To Be Chronically Awesome" page says:
(I'm posting the whole thing here, because really? How often do I/others really want to go chasing links around the interwebs? Not so much...)

"You are NOT your diagnosis!  You are always YOU first. You are a person with a chronic condition; you are not the chronic condition. It does not own you.

Define yourself by your abilities. Many of us have found abilities we never knew we had once we became chronically awesome. This isn’t the loss of your life, just the beginning of a new, and different life.

Communicate daily. Do not fall into the black hole of chronic illness. Talk to someone every day. Be it someone at home, on the phone, or via social media.

Every conversation does not have to be about your illness. There is so much more to you than your condition. You have so many interests, and so much about you that does not go away just because you are sick.

This may be a tough one but, get up and bathe and put on clean clothes every day. Ladies, if you are the make-up type, just put on a bit of gloss and mascara. Make yourself up a bit. When you look good, you feel good. If you simply don’t have the energy for all of that, maybe just a hairbrush and a clean set of PJ’s will do. Feeling fresh goes a long way.

Keep the faith! Whatever your faith or belief is, keep it strong. If your faith is in God, or yourself, just keep strong, and keep believing.

This is not your fault. You did not ask for this. Looking back over your shoulder and wondering why this has happened to you or what you could have done differently will not change where you are now. Always look forward. Never assign blame.

Don’t stress the small stuff, and it’s all pretty much small stuff! Stress can trigger flares, depressive or manic episodes, and all kinds of chronic symptoms that we don’t want. Learn the difference between problems and inconveniences. Many things are really inconveniences. Take a deep breath, get centered, and think. Learn to respond, not react.

Affirmations. Here is a simple one. At some point in the day, say to yourself, or write in a journal: “Today I was Chronically Awesome because…” and list all of the great accomplishments of your day. Anything from showering and getting dressed, taking a walk, to doing a half or full day of work at the office. Whatever you got done that makes you proud. “Today I was Chronically Awesome because I walked to the corner of my street and back.” Some days your list will be very long, or full of amazingly big things, other days the list might be shorter.

What matters is that you accomplished things, you own them, and they make you Chronically Awesome! Be proud!"

So yeah. That's that. I'm gonna try to take those words to heart and not get beaten over the head and heart by this new reality.

Sorry for turning into a sobby sadbucket. It's just that some days it really hits you, you know? As much as I'd like to be cheerful... I'm not big into faking it. Especially here.

Okay, I know the title of this post sounds like a downer, but I'm really not depressed or all angsty or anything. It's just how I would sum up my how I was feeling on Saturday.

Going to church screws me up.

As my friend C points out, that may be a good thing.

It brings out all my God-issues again and stirs up the disappointment, the anger, the profound sense of betrayal and loss... the caustic, sarcastic disbelief and the wounded, trembling child.

I don't like it.

But... I think she's right. It is still something that must be dealt with, layer by layer, from the inside out.

I left church because it was the right thing for me. I wasn't able to be healthy there at that time, and I still feel that way. It's not just because it stirs up all that stuff (although I won't lie, that's definitely a motivating factor), but because I always, always slip back into being this fake person, this achiever, this outward-focused, judgmental bitch, and I hate it. The worst part is that most of it is focused on myself. It is almost a given that I will hate myself, hate God, or both while I'm a church-goer.

I can't say that I'm not going back until I learn to get over that stuff, because it could very well be that I need to go back in order to learn to get over that stuff... but it's still not time yet. It's closer than it was, but not yet. I do feel as though I've learned more about myself and who I truly am since I walked out the doors and got rid of the mold I was trying to force myself into. That's been a pleasantly surprising process, and I know I'm far from done. I also know that I don't have to complete it before I go back.

Still, I'm glad I went. My grandparents were so pleased to see me, so excited... it almost made me feel guilty. Almost. It's like their joy at seeing me in church was an unconscious pressure to come back, to make their joy complete... but I can't go back for that reason, either. It wouldn't be real, and I would stifle. So many people had the same response. I felt very loved, yet also... bad. It wouldn't be so bad if I didn't know the mindset... the thoughts of "she's a young person wandering from the path but she'll be back..." I guess it just annoys me to think that the path I'm on could be so unworthy that I must be required to abandon it if I am to be "right" again. Blech. I can't even really verbalize this one this time. That's unusual for me.

The hardest part was not God, was not the quiet pressure from the pleased expressions, hugs, and well-meaning questions about where I've been.

The hardest part was the walker.

"What's that for?"
"What happened to you?"
"That's not yours, is it?"
"What do you need that thing for?"
"You're too young to need that!"
And, the very worst...

"What's wrong with you?"

Okay. Pause. Breathe. Think. Process.

I know they mean well. I know they're caring individuals who are shocked to see me with a walker, when the last time they saw me I was walking about freely. I know it's just the car-crash effect, and I know that they ask because they care.

But really?

There is nothing wrong with me. I am not defective because I struggle with constant, overwhelming pain. Just because certain parts of my body don't work as well as they ought to doesn't mean that I am somehow inherently flawed, alright?

When you hear the same thing over and over again, you start to believe it... and I left pretty down. I'd already been struggling with depression for the last week, and yesterday was a tough blow. Fortunately, I have some pretty potent tools in my toolbox, and I was able to avoid sliding into a depressive spiral, but it was tough.

I think the worst part is that I don't look sick. The walker/limp/stiffened gait are really the only outward indicators that I've got any illnesses at all. My wedding pictures are gonna come out great, because I'm slender and fairly toned, my skin is clear and my teeth are white, and my smile is as wide as ever. My thyroid problems don't show up outwardly now that I've got my acne under control. My adrenal issues aren't emblazoned across my forehead. My food allergies don't flash like a neon sign above my head. My miscellaneous gastro problems don't announce their presence via loudspeaker. (Um, unless I'm having flatulence issues... lol) It's just... that walker.

Usually, I'm pretty proud of it. I mean, I know I have to use it, so I might as well rock it, right? It's beautiful, and to me it's a sign that I'm a fighter and an overcomer. I will not let my illnesses keep me housebound or immobile. I will figure out ways around my problems and keep on keeping on.

But on Saturday... I felt like it branded me as some sort of defective piece of lower-class workmanship.

What's wrong with you?

How about this? How about asking me a different set of questions? Something like...
"How are you doing?"
"Do you want to talk about it?"
"You didn't need this before. How are you handling the transition?"
"Is there anything I can do to help?"

I liked the way the young man in Wal-Mart approached me. He pointed out the existence of the walker and politely asked why I needed it. When I told him I had fibromyalgia, the first thing out of his mouth was, "How are you handling the diagnosis?"

Wow. I've never run across that before or since. It really impressed me. I felt like he saw me as a person, not as a "less than" or a poser. I felt like a human being, and it was really nice. I felt the same way I do around C and my other supportive, understanding people, but it was coming from a total stranger.

I tell you, this has definitely impacted my thinking on how I relate to others, and how the questions I ask them might be taken.

Oh, and there is one other thing that I ran across (inevitably)...

Don't try to fix me.

I'm already doing my damned best, and I don't need anyone to imply that I'm not, or that if I did something different that I wouldn't have to be this way...

Because when you try to fix someone and assume they're not already on top of it, you're implying that it's their fault. They wouldn't have to be this way if they didn't want to, because you're offering them the cure! If they don't get better, it's their fault.

I hate, hate, hate that!

It's not my fault, and there's nothing wrong with me, alright?

*sigh* Moving on...

I created an entry for the Spread the Spoonz Awareness Campaign, and this is it:

This is the mantra that I repeat to myself almost every day, especially on days when I just don't "have it", or days when I'm feeling really insecure and inadequate about my performance (or lack thereof) and my inability to do or be everything that I want.

It was a good, fun exercise, especially since I was fighting that darn depression. It was quite therapeutic, and I'm glad that I saved it for that particular day.

C was also a good support. I came home from church and he just held me, listened to me, and let me vent... affirmed me :) He made me laugh, which was great. He also indulged me in my favorite anti-depressant/painkiller. (That's an innuendo, for those of you who didn't catch that.)

I'm glad I'm marrying him. (Five weeks from today! Whoohoo!) He has passed some of the most difficult tests of a true partner, and proven his loyalty, love, and compatibility. What a catch! I only hope that I can be as much of a faithful partner and loving support to him as he is to me. That's what I strive for, every day.

I've been doing some thinking today.

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

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

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

This is my new life. Welcome to it.

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

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

However.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Had myself a little breakdown last night... C and I were having a great conversation on styles and principles of disciplining our future children. Great conversation, so that's not what upset me.

In the middle of our conversation, S came to the bedroom door and asked about his Magic cards and why one drawer of the dresser that's by the snake cage was empty. I explained that I was in the process of cleaning/organizing it, and he got visibly upset because I had moved the Magic cards around. In my defense (and C agrees), it was in total disarray and looked like no one had touched it in months... at least. I thought it was abandoned. I told them that I had put all the Magic stuff together in one drawer (not knowing that there were other drawers of Magic cards that I hadn't gotten to yet, which held C's cards), and they thought that I had consolidated both of their Magic sets into one drawer and now they were all mixed together and the apocalypse would ensue and we would all die. (Okay. Slight exaggeration. But that's how it felt to me.)

So anyway, C says he'll go out there and fix it, and we resume our conversation, but I'm totally not into it anymore. It's all I can do to fight back tears. So when I tell C, "I'm sorry, but I'm just not really able to be a part of this conversation right now," he jokingly popped me on the head (because he couldn't see my face and didn't realize that I was upset), and I lost it. I rocket-launched myself to the side of the bed in tears, but C grabbed my hand and reeled me back toward him.

"Hey, hey... what's wrong? What's going on? Hey... hey. Look at me. What's wrong?"

So as I'm shaking and sniffling, and C's trying to get me to stop crying (because apparently guys have this freak-out reflex when girls start crying, and the only thing they can think of is "get her to stop crying"), I managed to blubber out what was going on.

With all the uncertainty of my finances lately, and with school winding down, and being sick, and with wedding stuff, I just feel very out of control. So to feel like I'm more in control, I start cleaning and organizing and "setting things to rights", and that's what I was doing with the dresser in the dining room. And you know, I thought I was doing a good thing, like "Yay, I'm making this a more pleasant place to live, and I'm keeping things manageable" etc. But then it turns out that I royally screwed up, which is bad in the first place because I hate making mistakes, especially when I think that I'm doing something right. And on top of that, the guys have all these unspoken "lines and rules" around their gaming stuff that I just don't know about, and so I keep tripping over them, and it's frustrating. Also, my pride was wounded, because I have the reputation of being able to clean while keeping everything in a place where it'll be easily found again. This time, I bungled that.

Or so I thought. Come to find out that all I had done was move S's cards, and left C's untouched, so it was fine.

Anyway, C held me and kissed me and listened to me and smoothed my hair back and wiped my tears away and apologized for bopping me on the head (which I assured him was not his fault, because in a different situation it would have been funny and cute, but he couldn't see that I was upset, so it was okay) and assured me that it would be okay, that I would be fine. He held me close and said that sometimes he forgets how hard things still are for me. I kissed him back and told him how much I appreciate him.

I'm very glad for him. And it's just funny how the littlest things can set you off sometimes, isn't it? I was totally fine after those brief minutes of tears and consolation.

I got several compliments today.

One of my friends from Essential Sciences class (the one I'm freaking out about because it's a super long and involved chapter that I can't seem to wrap my mind around and the test is this Wednesday) told me that I "have the brains of a thousand people!" I have a gift, apparently, and I won't deny it. I realized that in my chiropractor's office up in ID. What did he say? That I was one of the sharpest people he's ever met? For someone who spends all day meeting different people, that's pretty big.

When I showed C the flyer I designed for the 5k run fundraiser the HJ is putting on soon, he thought that it was a professional ad! Now that's a compliment :D

Last night, I had a minor melt-down. I mean, nothing major, I just felt overwhelmed and lonely. There's so much going on right now-- school, writing for that website, the haunted house, keeping the house tidy, wedding stuff... and I was "lazy" this weekend. I almost regret it, but not quite. I think it kept me sane, kept me from having a grand mal meltdown. I just couldn't find the ability to care, really.

Anyway, last night I was going back and forth on whether or not it was selfish to ask C to come cuddle with me, since he was doing something of his own. I just wasn't sure if it was okay or not... not that he'd be mad at me or anything, but is it fair of me to ask? Anyway, I said his name, then chickened out. He, however, came over to where I was and laid down with me, holding and comforting me just like I was going to ask him to. Of course, I told him what I was going to ask, and then proceeded to melt into tears on his shoulder.

Last night, I really just wanted the physical comfort and steadiness, but his words of wisdom made great sense in the light of day, and I'm very appreciative of them (and for him!!).

"Hey, lady, what's up with you?"

"I just... I feel so broken, you know? And just totally overwhelmed by all the stuff that's going on. I've got so many things pulling at me..."

"You're going to be okay. You need to stop worrying. You're doing really well in school, and the wedding's still a ways off and you've got a lot nailed down."

"Yeah... *sniffle* I know. It's just... it's scary being sick all the time, you know? I just feel so broken... and I'm worried that it's something serious."

"We'll get it all figured out, what you can eat and what you can't. You'll get better. But it takes time to heal this kind of thing! And you, Miss Impatient... you want it all done right now. You get impatient with instant mashed potatoes!"

"I do not!! And besides... I'm allergic to potatoes."

"Well, yeah..."

"And I make my mashed potatoes from scratch, thankyouverymuch."

"But you're allergic to potatoes."

"Well, yeah..."

*Both laughing*

"Seriously, lady, you need to stop worrying. You'll be fine."

His advice upon not caring about anything right now?

"Well, find little things to care about until you can care about the big things again."

Sound advice, my man. Sound advice.

And, apparently I'm not a negative person... except when I'm depressed. Then I am.

I later did, in fact, admit to my impatience. He totally called me on it. I do want everything done and decided right now.

Anyway, he was understanding and wonderful, and, more importantly (I think), eminently practical. I didn't appreciate that so much last night, as I said, but mulling it over today helped me to see the truth of his words.

I asked him how he manages to be so patient.

His reply?

"Well, it takes a lot of patience..." (laughter)

Thanks, buddy. Some help you are. ;)