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.

Beware-- this is the post about sex and kink that I warned you about in the previous post. If this subject makes you uncomfortable, skip this post. Seriously.

I'm part of the local kink community, the BDSM "scene", if you will. We have regularly scheduled get-togethers throughout the month, usually 3. One is a dinner at a restaurant, called a "munch". Munches vary from place to place, but basically it's a gathering of the kink community to hang out in a non-kinky ("vanilla") place. Another night, we have a "slosh", which is a gathering to hang out and talk in a bar or place that sells liquor. It's like a munch, but with booze. The third thing we do every month (with a few exceptions throughout the year for various reasons, always good) is get together at the house of whichever member(s) is/are hosting for a play party. What takes place at a play party is as variable as the composition of the group. The purpose of a play party is to allow kinksters to engage in their common activity, BDSM, in whatever manner they choose. Also, everyone brings some sort of food dish to contribute to the general potluck, so that's important. Like, really important. (Beyond being sarcastic, it actually is important, because coming down from an intense endorphin and adrenaline high after a scene can be difficult, and food goes a long way toward stabilizing you and your blood sugar and keeping you from crashing and burning. There are other things that comprise "aftercare", but food and water are important ones.)

Last time I attended a play party, I asked one of my guy friends there if he would flog me. His wife, kittymeow, was fine with it, as was my husband, so he put me in restraining cuffs on ankles and wrists and chained those to the St. Andrew's Cross, my face inward. This particular one is a double cross that's hinged at the top, and both sides come down at a bit of an angle so it makes a triangle, two sides of it being X's and the bottom a wide wooden base. He started with a smaller flogger, then worked his way up to a large, heavy one with lots of falls, or leather strands. Then he worked his way back down to the light ones, finishing up with a quick session of a whip-- my first time with a whip, and I was afraid that it would hurt me more than I wanted, but hawkeye has fantastic control, and he kept the sting minimal. He finished the session with knife play, after asking me if it was okay, of course. (Knife play is, btw, amazing and incredible and super yummy. Could just be his technique? Whatever. Amazeballs.) He also asked me before he used the whip, because that's the number one fundamental rule for BDSM of any kind-- Risk Aware Consensual Kink, or, put another way, Safe, Sane, Consensual. There is a lot of continual communication during any kind of play, whether it be impact play, like being flogged or whipped, or sensation play, like the knife, because the top (or "Dominant") needs to know where the bottom (or "submissive") is at with pain levels, tolerance, sub space, other bodily needs, etc. If you're feeling uncomfortable and want to stop, all you have to do is simply say so and it's over, just like that. No questions asked, no fingers pointed or derogatory comments aimed in your direction. A standard practice before starting a scene is to agree on a "safeword", which is a word or a phrase that means "I need to stop right now, this very instant!" It's important to have that in case you aren't thinking straight, or if your play involves a lot of "no's" (that don't actually mean "no", of course), or whatever might come up. Maybe you suddenly have the runs, or your trick hip just gave out. Who knows? At any rate, if the people you're playing/scening with are worth their salt at all, the option to quit at a moment's notice is always available with no repercussions. The top can use the safeword too, if they want, though usually it's the one enduring the pain that uses it.

Although I've not been a part of the local kink community (or any kink community) for a terribly long time (less than a year), I've come to really love and appreciate every single member. They all bring something unique to the table that makes up the varied composition of our group, and our group is fantastic. We have so many crazy talented people. Sadly, three of our number are moving away, one to be with her Dom, so that's a happy thing, but the other two, a couple, are moving because he received a new military assignment. They're engaged, so where he goes, she goes, which is killer for all of us, because they are pillars in this community, but especially for her girlfriend, kittymeow... I'm hoping that I might be able to step in and fill some of the gap that's left for kittymeow, the girlfriend/wife. We relate especially well because she's a chronic pain sufferer as well, so we understand each other on a level that others never will. The coming party has been planned for some time, and it's going to be a "Goodbye" party for our three moving friends. We haven't had a theme before, but since this is a special party Devil's Advocate, the fiancée, chose to theme it as a Masquerade Party! They've also named it Ragnarok, which I find particularly amusing.

Corey comes to parties with me when he can, but most of the time they fall on a day that he's working. Since his days off got shifted away from Saturday, he's not free to come. This time, though, he'll swing by after work, at least to pick me up, and so he can say goodbye. It's supposed to end at 1 a.m., but I am not alone in suspecting that it will run longer than that. Funny story: when Devil's Advocate saw the Robot's mustache, she made Perfect Devil grow one as well, which was fine because he was totally inspired by his 'stache anyway! Too funny ^_^ Anyway, I began running into the problem while soloing at parties that I wasn't sure what was appropriate behavior for me and what wasn't. I wanted to play more, but I didn't want to violate Corey's trust in me or commit a relationship infraction, so when I came home from the last party we sat down and devised a set of rules for when he is not at a party with me. The project I'm working on is to transcribe them to a cute, portable little piece of card stock or a card, or something, something I can take with me and refer to with ease this weekend. So far they are just scribbled down on a sheet of notebook paper, but I want to share them here as well, to give an idea of the etiquette the Robot expects me to uphold when he is not around. The rules go as such, without any particular order in regards to importance:

1. All rules apply to both parties unless stated otherwise.
2. No hands-on or oral genital stimulation is allowed in Corey's absence, giving or receiving.
3. If prior permission is given to allow stimulation, I must be wearing underwear during the act(s).
4. No penetration of any kind by others, whether toy or body part.
5. I may not orgasm by the efforts of anyone else but Corey and myself.
6. No kissing males, including MtF trans, but females are fine for mouth kissing.
7. No mouth-to-skin contact (i.e. nibbling, biting, etc.) on any location that can be covered by a mask or a g-string. This includes face, genitals, and anus.
8. Breasts are fair game at all times.

I picked up a gorgeous glass horse tail anal plug while in Wisconsin. One of the conference speakers discussed sex and disabilities, and at the end she passed out her business cards. She works at an "erotic boutique" that's feminist and education based and it sounded amazing, so several of us ladies went over to check it out, and we all came away with stuff we were really excited about. I couldn't put the tail down once I'd asked to see it out from under the glass counter, and I knew I would really regret leaving without it so I bought it! I got several other things, which I may or may not discuss in another post, but on top of all that I also picked up a gorgeous plus size teal satin and black lace dress/teddy thing. (Technically my mom did, but it was for me, so…) I had been freaking out over what to wear to the Ragnarok Masquerade, but suddenly I had an answer! I also went to the Fox River Mall and got a very gorgeous and sparkly purple half-mask to wear with it all, et voila! All set :) Here's a few pics of the tail that my friend took when I tried everything on the other day. (If you click the links in this paragraph, it'll take you to the website of the toy store, and the specific items that I bought from them. I think that in another, later post, I'm going to compile a wish-list from the store, Tool Shed. Everything I saw there was really quality, and because I support the store's mission, I'd like to buy from there to support them financially.)

 

Well folks, I'm all tuckered out. I'm not so used to typing anymore. In fact--little secret, here--I've already fallen asleep at least twice while finishing up that last paragraph! So good night to all, and may you have wonderfully saucy dreams.

I got my hands on an off-brand of Nutella that I can actually eat (can we please stop with the gratuitous soy usage, corporate America?), and I understand everything now. I mean everything. The meaning of life, the universe and everything. Turns out it isn't forty two, it's chocolate and hazelnuts. In spreadable form. The gods have descended and Eden is here. It's like the Ferrero Rocher chocolate candies that I've loved so much for so long but can't have anymore (thanks again to the soy problem) have exploded all over this whole grain toasted pita…slice? (what do you call a single piece of pita bread in all its pockety glory?). Of course, the whole wheat makes it healthy. Right? Right. Also, as a completely pointless side note, I must say that not indulging in the Oxford comma for the phrase, "life, the universe and everything" is killing me, but I am pretty sure that's how it's written and I want to be faithful to the original text. Douglas Adams deserves it. (For those completely lost, I'm referencing "The Hitchhiker's Guide to the Galaxy" series by Douglas Adams. It's a series of books that is completely silly, mind bending, and entirely sensible if you read them all through.)

Chewing this deluxe chocolatey treat is killer, though, thanks to the good ol' oral surgery recovery. The gaping sockets where my 3 wisdom teeth used to be are pretty much alright, in that there's no easily discernible spikes of pain above what I normally experience, but the bottom left jaw pain has got to be the incarnation of everything evil in the world. Due to the positioning of that tooth, the extraction involved cutting open the gum and sewing it shut again afterward, and this stitched area is causing me debilitating pain. Yes, even with the copious amounts of strong pain killers that I am taking, and yes, even with all of the little countermeasures you can take against pain in addition to the pain meds, it's keeping me from sleeping at night, keeping me from eating solid food, giving me migraines, making the hours pass soooo slooooooowlyyyyy, and making my supply of pain killers look suspiciously puny. Once or twice a day I give in and eat something that requires chewing, but ouch.

I finally caved yesterday and started applying ice directly to my jaw, and that was an amazing breakthrough... at first… for a bit. Now it doesn't seem to matter. Sorbet has been a helpful friend as well, kind of numbing things out with cold from the inside, plus it's super delicious! The weather, though, has been affecting the pain levels. Clouds have been coming and going and bringing rain, so on the days that the weather is changing my pain is skyrocketing. On the calm days with no clouds and no changing, I was able to get it mostly under control. Since I cannot control the weather, I will simply do what I can to get this healing up as fast as possible. It's nice to know that this intense pain will end at some point. I'm not used to thinking that way anymore.

So. Birthday coming up in a week, give or take a day. I'm going to be the ripe old age of 27. I think it's fair to say that I'm definitely not where I thought I'd be in life at the moment, and things are going to be different than I had planned, but I think I'm coming to grips with that. I feel like I'm coming to after some time in a thick, numbing sleep, coming back to myself and gulping a huge lungful of air. I've had several "off" months and lots, lots, lots of heavy blows in a row. That's had me staggering, trying to come to terms with reality; adapt, adjust, and survive. I have not lost myself, though, and I feel that irrepressible sense of self rising yet again, despite the surroundings and trappings that modify the expression.

While I was on a walk the other day I caught sight of the desert mountains in the distance, and the dark-light pattern of the clouds and sunlight passing over them in turns gripped my heart as it always does. I felt the familiar yearning for a good, solid hike, followed by a mournful thought that hiking is out of the question when I'm scraping along the road with my walker. The second thought I had was, "Fuck that noise!" I refuse to let myself be bleached barren and bled dry by my disease(s). When I go hiking or backpacking I definitely won't be able to travel as far or as fast, but that doesn't mean that I have to give it up entirely. Yes, there's something to be said for working within the parameters of reality, but there's something more to be said for not giving up on yourself and refusing to become a bland mush of a person when faced with limiting circumstances. So no, I won't be a massage therapist like I had dreamed and planned, because that's just not realistic when you consider my connective tissue disease and my fatigue and pain levels. It's not a matter of want, it's a matter of not physically capable, no matter how hard I push myself and aim for the dramatically inspiring documentary story of a life.

But I still massage my husband, my friends, when I can. When I can. I've adapted. I've altered. But I'm not giving up, not unless I want to, and for my own reasons. Because while I refuse to be conquered and give up on my hobbies and my interests because of circumstances imposed on me against my will, I also refuse to be stuck doing stuff that I no longer really want to do or that I didn't want in the first place, simply to prove that my illness "doesn't define me" or whatever. If I were doing stuff just to prove that my diseases don't have me by the balls, in that moment I'd be proving myself wrong. It's a tricky thought, and a tricky balance, and it's taken me some time to get to this place. At first I needed to simply withdraw and lick the wounds inflicted upon diagnosis, to simply ride the tide of one appointment after another, and I'm okay with that. There will be times when I do so again, and that's fine. So long as the reasons are mine, and I'm doing it for me (and not because I've been bullied into it by people or my diseases), I can do whatever I need to do to get by. For me, for now, it means letting myself emerge once more, a slightly different incarnation with all the spunk and sass of my former self combined with a new balance and perspective tempered by pain and trials.

Hey, did I mention that I got glasses? Yep, I sure did, and they make me look hot. I'll get a picture in here sometime when I can, but for now just take my word for it. Here's how great they are: I actually feel more attractive with them on than without! Yeah, I know. That's never been a thing for me before. In fact, I feel very good about my appearance in general lately. Sure, I'm still overweight and trying to slim down, but my hair has been growing out and is now a chin-length bob in my natural color, my skin is clear, I've got really cute glasses, I finally found a type of bra I can wear comfortably, thus my breasts and cleavage look fantastic (even if they *are* sports bras), and I've got some really cute earrings. I want to get more holes in my ears and I've been playing with the idea of a nose ring, a very thin and delicate hoop (see below), but I just don't think it would look that great.

I've always wanted an eyebrow piercing, however, so maybe I'll go for one of those...

I definitely want what the ponytail lady (that's Fergie, right?) has in the way of earrings-- a whole ear-full, all the way down. (I just hope my babies don't decide to reach for the shiny things, you know? Yikes!)

Of course, I want a tattoo in the worst way but since I struggle with hyperalgesia and always will, I figure that it's probably out of the question. Unless I were to use medical grade anesthesia or something for the procedure. Hmm… (Kidding.) My first tattoo, though, would be this:

To wrap things up, and on a completely unrelated side note, I love my kitties. We took Fancy, the new cat, to the vet today to check out her ears--either mites or an infection, either way real bad when we got her but improving while with us--and she behaved so well both on the car ride and during the appointment itself, even while they made use of the rectal thermometer. I know that I wouldn't be as quiet and docile as she was if a rectal thermometer was involved in my exam! Turns out that there are no mites, at least not right now. It could have started out as mites and then progressed as they left their waste behind, but she has a fungal infection that a course of ear drop medication should clear right up, and I expect that we'll see a bit of a change in her disposition once that's better. She's already sweet now, but there's a difference between being nice and sweet while you're in discomfort or pain and being sweet and nice because you're no longer in discomfort or pain. You know what I mean? Well, right now she's kind of a bitch to Bob and Juneaux (pronounced "juno", by the way), hissing and swiping when they come near or if they (try to) pass by, growling at them if she so much as sees them, but it's just driven Bob and Juneaux closer which is what I was hoping for. They're becoming bros, which didn't happen before because Bob actually had his bro, Cortes! So we'll see what happens as the kitty soap opera continues. Tune in next time for more drama on As the World Tunas/General Pawspital/All My Kitties/As the Fur/Litterbox Turns.

By the by… Which is your favorite kitty soap opera name? Got an original one? Let me know in the comments!

'Sup? I'm alive. Still. That's good news, right?

Still recovering physically from the trip and the unbelievable emotional low it brought… I will get the courage to blog about it soon, I'm sure. Maybe next week when I'm in the big city again for rheumatologist appointment (squee! I got in early!) and am hanging in the hotel with nothing to do besides internets. (I'll be going up with my grandparents who, conveniently, already had plans to be up there Tues-Weds for meetings my gramma has. So I'll just go up with them and spend the night and enjoy a little vacation ^_^) I'm sure it would be more entertaining and less energy consuming to just Pinterest, though, so that may happen. Heh.

I can't believe time has flown so fast and it's only 2 days until my birthday! I'm looking forward to my party with more than the normal fervor, simply because this week has been filled with so much apathy and despair. On a positive note, that night of drinking with my friend went well. I didn't get all drunk like the last time I drank, and I wasn't by myself so it was way more fun, but they did and we both were all flirty and affectionate and it was nice. We have both sibling-zoned each other so hard it's not even funny, but we're also both comfortable enough with our current relationships and each other to crack jokes at each other on a regular basis. Not physical flirting, mind you! No, my lovin' is reserved solely for my husband, but I am becoming more of a cuddly person with those I consider my very close friends, of which this person is one. My flirting isn't gender-exclusive, either. I flirt with my close friends of any gender and sexual orientation, so long as they're comfortable with that. I would never flirt with Rose, for example, because that would just be awkward. She's not that kinda gal, and I respect that. Also, I'm sure I'd never flirt with the Musician, because she is my sister and not just a close friend that I consider to be sister-like. That, too, would be awkward.

Anyway, just a quick update, I suppose. Let y'all know that I'm still here, still alive, and just working my way closer and closer to my birthday with a growing measure of excitement. Kahl Drogo doesn't read this, so I can say it here… I plan to go out and get him a brightly colored t-shirt for the party hehehe. And maybe something sparkly, if I can convince him to wear it. In any event, something bright, because he owns nothing bright. I wish I were exaggerating. He's also not bought new t-shirts in the entire time I've known him, except for work undershirts. That means 10 years of the same shirts… which is fine, because he takes good care of them and they're hardly wearing out at all. But… I think it's time for at least one new one. Especially if it's bright and happy :D

Note: Remember, if you need nicknames and who is who, check out the post Appellations.

Fun fact: I've been toying with introducing gluten back into my diet, so this past week I've been eating regular oats (which do not in themselves contain gluten, but oats are known to be highly contaminated by gluten containing grains in the production process), and have had no ill effects. Yesterday my friend E brought me some goodies from Sprouts, since she was in the big city this week and they have such stores there. I had asked for a certain brand of GF bread but forgot that they also make regular breads as well, so she came back with the flax seed bread that I had asked for… but the whole wheat variety. I figured it was as good a time as any to test out the gluten theory, so I had several slices of toast for supper last night, and some for breakfast. I am pleased to say that I am suffering no ill effects whatsoever, and no gastrointestinal distress or pain of any kind.

I think my gluten free days may be over.

I'm excited pretty much beyond reason. 'Cause oh my word… bread. And the possibilities are endless… I can eat baklava again! Desserts… I can have real cake or pie for my birthday!!!!! I can make a turkey sandwich. Did I mention desserts? Oh, and crackers. Crackers! Italian food. Lasagna. I can eat out at restaurants again! Olive Garden, perhaps? *gasp* I can eat eggplant parmesan again!

You guys… you guys… Pancakes.

Right. I'm going to stop now. I'm getting myself way too worked up. But man… I'm so excited.

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!

Today is definitely a rest day. I've been napping up a storm the past week or so, especially since I had that really rough day without the meds. I've spent the last few days trying to recover from that, but I pushed it too hard and went down yesterday. The awards ceremony really took it out of me, and yesterday when I met up with E for a lunch meeting followed by work, I almost passed out in the restaurant. I was soooo sick.. apparently I went whiter than a sheet, and I barely made it out the front doors to the car. I had to leave my car there while she drove me home, and needless to say we didn't get to work that day. (No paycheck this week. Bummer.) She called me today, worried like crazy, but I assured her that I am alright. Apparently she had a panic attack on the way home, she was so worried, and she was talking about it with her husband (who adores me like I'm one of his own, and I totally love him too). Poor E. I did just what she said and rested as soon as I got home, though. I spent the rest of the day in bed feeling pretty lame after sleeping a few hours, and I've done the same today. Just woke up from another 4 or 5 hour nap. Sleep is nice. It keeps me from hurting while I'm doing it lol. Also, I haven't been sleeping well due to nightmares and increased pain at night, so I often wake up after a few hours, stay up with C until he goes to sleep, then crash out again with him. It's nice to be able to spend so much time with him, though!

I sincerely hope that this passing out thing is just a fluke, a product of overextending myself and using up all of my resources, rather than a new symptom come to torment me. I've been struggling with lightheadedness and fatigue for some time now, but this is new... and really, really unpleasant. Truth be told, it's terrifying. I'm scared to leave my house now. What if it happens while I'm driving? While I'm out and about on my own? Bad enough that I never know when a twitching fit is going to strike, but now this? I'm scared that it's a sign that my body has taken another step on the road to breaking down. Maybe I'm a hypochondriac, but dysautonomia was the first thing that came to mind. Of course. lol. But then, how can you not be a hypochondriac of sorts when you don't know exactly what's wrong with you and you've got a whole buffet of symptoms at your disposal that could point to a bagillion things? Yep. You just roll with it and keep your fears to yourself... and then spill them onto your blog. Heh.

I broached the topic of guilt with E while we were driving home yesterday. She put me in my place for even daring to compare her sickness and mine, vehemently stating that she deals with a different illness with different symptoms and she has to take care of herself in different ways. She said there was nothing to apologize for when I told her that I was sorry I couldn't work and that I was sick, and she told me not to ever apologize for that again. I love that woman. I explained to her my guilt about her working so much and being so sick, yet I can't/don't/won't. She just shook her head and said that she has to see the HJ grow. I brought up my theory about that being what she has to do to survive, but it's not me.. and she kinda agreed. Like, the HJ is her baby. In the big picture, she has to see it grow and flourish. It is necessary to her personal well being, even if that means putting up with sickness in the meantime. I want to see it grow and flourish, too, but it's just not the same. And so she has to hid her sickness in a way that I don't have to, because she's being watched by certain people and agencies in the community and they will strike at any perceived weakness. One thing I do know, though, is that she would be far sicker without me. I help her a ton, and we help support one another. We hold each other up. So my guilt is alleviated. We both survive on our own terms, and mine isn't wrong... just different.

On a happier note, J officially booked the ticket that will take me to her family's home so we can spend Christmas together! Bwaaaaaaah! I'm so excited. We haven't seen each other since... since... like, spring of 2012. It's been a year and a half, abouts. Far too long. But distance cannot separate the hearts of true roommates! Haha. Anyway, her parents are being super generous and buying me a ticket to fly out there, then she and her mom and I will drive back to Y and drop me off before they continue north to see J's uncle and J flies back home. I still am having a hard time absorbing the reality of this. I mean... that is so incredibly generous and kind of Uncle S and Auntie C. I just... wow. Wow. Like, what did I do to deserve this? Makin' their daughter happy, probably. lol.

Coraline has become quite brave and comes into C's man cave with no trepidation, rubbing up against C's computer chair and accepting petting from him. This, from the cat that fled to the other end of the house at eye contact with him just a week and a half ago. It's because she and I bonded well, she trusts me, and so when I "lured" her into C's room while he was in there she trusted that it was ok. After the initial exploration of trepidation, she's a bold little bugger. Her favorite new toys are a pink eraser and a white board eraser. She plays with those things with such ferocity and focus... it's adorable! I am keeping both kitties inside today, though, especially Coraline the black. People do sick things to cats on Halloween, especially black cats. I'm sad to say that this is the case, but you just work with the reality you've got.

I made a tentative friend through an online forum, and C and I are going to meet her for the first time tomorrow. I've been looking for female friends in my community, since most of the friends I have are guys, and all of my good girlfriends are eons away. I'm lonely for ladies. However, it's not like I can "get out" and make friends, so I am cautiously trying the internet. Taking C with me is a good precaution, I feel. I have a good sense for creepers and so does C, so if anything's off the odds are that we'll notice. Plus we're meeting in a public place, so that's much safer. I hope it pans out! As much as I'm an introvert, I do miss having friends over just to chill now and then. I kinda wish I was well enough to do something for Halloween. I miss dressing up, mostly because it's fun and I love the theatric, but also because of the social aspect. If I were feeling ok, I might even try a bar this year, just to see what all the fuss is about. Not like I can drink anyway. But eh... I'm going to keep the porch light off, ignore the knocks. We didn't buy any candy, and I do not have the energy to get up and down answering the door every few minutes. I wish that I had The Nightmare Before Christmas to watch, though. I love that movie... C hates it. He and his brother are both super freaked out by claymation. Funny fear, right? Anyway, today's the perfect day to watch, especially with C at work. It's a family favorite. I have so very many pleasant memories associated with that movie... very nostalgic. I like nostalgia.

I'm lying here, in a world of hurt, contemplating tomorrow.

I don't understand why my pain has just been getting worse and worse, but I'm hopeful (and fearful) that tomorrow will hold answers for me. Well, truthfully, no matter what the tests say I will have answers. Either I have MS or I don't. Either it's lupus or it's not. Either they see something wrong with me or they don't. Either we know what's killing me slowly or we know to look somewhere else, to some other solution.

C seems pleased at my efforts to be healthy and live a full life in spite of the pain and sickness. We took the snake for a walk tonight, and we walked all the way down the block to the canal, then followed that down to the main road before we retraced our steps. I'm proud of myself. I've made it a goal to take a walk every other night, and C is supportive of that. I love taking walks with him, and there's no point in walking during the heat of the day anyway, so I may as well wait for him to get home before I go out.

I worked several hours today and accomplished a great deal, more than E thought I would. She had to go out and run some errands so I finished the tasks she needed done that day and just kept going with filing and other projects that have been lying around for a while. I've got more phone calls and stuff to make tomorrow, but the good news is that the board approved an hour increase for me, so I can work up to 8 hours a week now! That is, if I can physically handle it, of course. But I really want to try to maintain 8 hours a week. Not only can I use the money, but it is also good for my peace of mind and my sense of industry.

As much as I'm involved in the HJ these days, it came as a funny realization to me today that I really don't feel the need to attend the sexual assault support group for myself anymore. At least, not right now. I'm in a good place, I've got good coping mechanisms and healthy tools in my toolbox, and I'm in a pretty steady place in my life. In addition, most of my energy is focused on the fight for my physical health these days, and my emotional health is not the main priority for healing any longer. I'm sure I'll still pop in from time to time, and there may be a time when I need to go back in a more long-term fashion, but... I guess I've moved to a new place in my healing journey, one where I can give support as well as receive it. I am getting support from places other than group now, and it's enough for me.

It's funny... I was musing today that I have gained a lot from my battle with chronic illness. I've grown a lot as a person, my perspective on life has been refined and tempered, and I am much more intentional in my relationships and my lifestyle. My support network has been finely crystallized into a distinct entity, whereas before I just had... friends. I've learned a lot about boundaries and humility and accepting care from others. I've learned a lot about letting others care for me as a friend, and how to care for others in a truly open way. I've learned even more about taking care of myself in all aspects, and I've learned how to listen to myself. (Mostly.)

So no matter what answers (or lack thereof) tomorrow brings, it's just another step in this rich, tumultuous journey that I'm on. I'm grateful for it... but sometimes I wish it hurt less. In so many ways.

Woohoo! Today my stunningly handsome husband is taking me out on a date! Why? Well, because I need it, and also because I got a new super-cute and sexy dress, so I need an excuse to wear it, of course. :) (Can I just insert a shameless plug for my local Goodwill here?)

See? Bad picture, cute dress. Sexy in a "50's pin-up" kind of way. Funny thing-- I would have NEVER considered wearing something like this, even a year ago. I was much more, shall we say, modest? And now I feel perfectly modest in this dress, although I know others would disagree. But all my lady-bits are covered, it's not some sort of diaphanous material (quite sturdily made, actually!), and most importantly? My husband likes it.

So, on a date we go! I'm going to get my hair did and put on the face paint and everything. All out. (Well, as "all out" as I go, anyway. He likes his lady looking natural, which is a win for me!)

I'm glad to have something to look forward to. I did not sleep well at all last night, and today's a pretty high pain day for me. (Hello, milestones-- my "high pain days" now are what my high-average days were like just a month or two ago!) I know I'll feel better after a shower, and I've got acupuncture + massage this afternoon. It'll be good. I'm just going to take it easy today.

Also? I still trip out sometimes about how awesome it is to actually be able to casually drop the word "husband" into conversation. I freaking love it.

Also also? I made banana-bread muffins last night while tutoring my friend C, and they're all gone this morning. All gone. I gave friend C several to take with her, because she LOVED them, hubby C ate two, and I had a couple for supper. (The recipe didn't quite make a dozen, sadly.) What's amazing is that C liked them, because I'm honestly not the best baker in the world when it comes to allergy-friendly baking (it's really hard, y'all!), and I don't think I've baked a thing yet that he's liked... until now. I did leave them in a bit long, because I wasn't sure what the inner consistency was supposed to be like, but now I have a good recipe to play with and a baseline from which to experiment. I'm very happy about that.

In addition to that, I made a necklace for my yoga teacher/massage therapist, because she's moving away and I've come to really respect her as a mentor and guide, but also to appreciate her as a friend. She was really enthusiastic about and interested in my proposed online store business plan, so I thought it'd be fitting for her to be the first to receive something that I've crafted in that vein. I etched the Ohm symbol into the front of a purple shell pendant, and etched "Namaste" into the side. It's also fitting that it's purple, because we had a discussion yesterday about today being Lupus Awareness Day, and Sunday being Fibromyalgia Awareness day, both of which are represented by the color purple.

She'll be speaking to one of our support groups next week, so I'll give it to her then. I'll be sad that she's moving, but thank goodness for Facebook, eh?

Update: Date was fun. A couple of pictures for proof. 

Well, after much hard work and preparation.... I missed two questions on my A&P final. It's okay. They were questions that weren't on previous tests, so I would have had to have been studying ALL my notes from the semester to have caught them, since I didn't remember off the top of my head. 98% is not bad, and I finished the class with 801/800 points. Yay! My goal for that class was to finish with extra points, so... Mission Accomplished!

My math final is tomorrow, and I'm a little nervous... because I spent so much time studying for this other class, I have neglected to study math. That's what today is for. But it's not like I have to memorize definitions or anything... it's just working out problems, and I've already done the prep worksheet. I'm just going to go back over the worksheet and see how I worked out the problems.

I picked up my walker yesterday. The lady I bought it from was very sweet, but she said, "You look a little young to be needing a walker..." LOL! Yes, well...

I'm itching to get to work on blinging it out, but I know that I need to focus on studying first. Priorities, priorities... Once my math final is over, I can work on my walker and start packing for my trip home. I'm so excited!!

Anyway, I've settled on a name for the walker-- the Bling Chariot. It's gonna be freakin' sweet.

Well, my sister had her baby. Six pounds, six ounces.

SK, aka "Peanut", is officially a part of the outside world now. (God help you, poor child!)

So I've spent the "morning" on the phone with my parents, hearing stories of the labor and delivery, of the dogs' reactions, of the baby herself and her quiet little cry, of how cute she is, etc. (I say "morning" because I woke up late. I made the mistake of eating food last night, and I was up until about 4 a.m. with my pain.)

I didn't realize how much it meant to me to be there when my niece was introduced into the world until I wasn't able to. Like, I really, really want to be there. Family is so important to me, and this is such a major family event... I feel like the kid who watches all the other kids traipse off to the swimming pool from the bedroom window, crushed because I can't go for reasons beyond my control.

I just want to hold her so badly!!

But... but... but... I'll see her when I go home for Christmas. R likened it to going out to dinner and getting dessert as a bonus. I'd be going to see the folks even if Peanut wasn't there, but now I get dessert, too! :)

Also, Mom and I will be crafting our little hearts out for the wedding while I'm there.

Oh, dear. I hope I don't idealize this vacation too much... because honestly, it sounds like paradise. Family, crafting, and little Peanut? Be still, my heart!! <3

I'm so proud of my little sister. She was a champ.

C got ahold of a movie that he wants to watch with me tonight when he gets home. In the midst of packing and cooking and studying and dealing with my poor intestines... it is most welcome. I've been looking forward to it all day.

It's a romance/musical. Go figure the guy likes romances. (Which I'm happy about, because I loooooove a good love story! And a good song and dance number.)