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.

Tomorrow is my birthday. Tuesday, that is. I know it's technically Monday right now where I'm at, but I've been awake for a few hours after another few hours sleeping, only a short nap, so it still feels like Sunday to me. Ah, who am I kidding? The days don't "feel" like anything to me anymore. I don't have a regular enough sleep/wake cycle for that. It's all one long day, punctuated by naps long or short.

On Tuesday I turn 28. I can't help but take stock, think about the passage of time and how much I may or may not have left. When I was in high school (during one of my several sophomore/junior years) I attended a prayer breakfast where the keynote speaker was the father of Rachel Joy Scott, the first student to die in the Columbine shootings. His story of Rachel's life touched me deeply, and it also lit a fire inside me that I've never really been able to explain. You see, she had this purpose and direction to her life that makes me ache for something similar, and even though she died quite young, she still left an indelible mark on the world around her with her kindness, her inclusiveness, and her determination to make the little universe she inhabited a better place. The best part is that she did. She knew somehow that she was going to die young, that year that she was shot. She wrote in her journal some time previous that "this is my last year on earth, I have learned what I can" or something to that effect. (I'm going off of a ten year old memory, so it's not exact.) And now that I'm facing the accomplishment of year number 28, it astonishes me because I always felt that I was going to die young, too. I never really expected to reach thirty. I suppose it's because I've spent so much of my life focused on immediate survival, which was the only way to make it through the trauma of the first decade and a half, but the dreams of the future always seemed unreal and hazy, not concrete at all.

When I look back, though, I am very happy with what I've accomplished, particularly knowing now that I was fighting against Ehlers-Danlos the whole time, and some of the other stuff like adrenal fatigue and food allergies as I got into my teens. I've had some grand adventures in my time. I feel particularly fond of my Idaho adventures. They were the ones most closely aligned with my most closely held daydreams of adult life. Have I ever mentioned that one of my most passionate wishes as a girl was to grow up and join an Amish community? The rustic, living off of the land "survival" lifestyle holds a deep, deep appeal for me, and living on the premises of Summer Hill Farm away up in the mountains was a dream come true in a lot of ways. I only wish that I could have stayed longer, or gone up there sooner. The timing worked out, though, to be for the best. I could not live up to the rigors of country life in my current state of disability, so it's best that I moved back to a soft city life before it got too bad! ;-)

I do feel a sorrow, though, for the life that I will not get to live. Chronic illness and intractable pain have changed my life irrevocably, and there is a deep sadness that comes with that certainty. Granted, I'm the most comfortable that I've been in years, now that I have the proper balance and dosage of pain medications, but the thought of years and years of this is… daunting. To say the least. I feel like I'm constantly dancing on the edge of a chasm, and if just one little thing goes wrong anywhere in the chain of events, I will topple over the edge and be broken on the jagged rocks below. If something happens to  the manufacturing or delivery of the pain medication, I'm doomed. If the pharmacy has troubles with stocking (like they have the past 6 months), I have nowhere to turn. I tried getting my meds filled at a different pharmacy, but they all turned me away because my needs were too great. If I can't get the hundreds of dollars necessary each month to buy the meds… I'm toast. So it's not just the thought of the huge drifts of pain that will accumulate through the years, but the stress of not knowing, each and every month, until I'm rolling out the pharmacy door with meds in hand, that seems the most unbearable. It's a really doomy, gloomy thought, so I try to not think about it much. Sorrow? Check. Stress? Double check. Moving on.

I read a really interesting sci-fi book a few days ago called "Factoring Humanity" by Robert J. Sawyer. I don't wanna give away spoilers, but one of the premises of the book is that humanity isn't a bunch of individuals on a spinning rock, totally unconnected from each other, neither is the information gathered over a lifetime lost when an individual dies. Rather, humanity is all connected to one another through what the book terms the "over mind", a collection of the consciousness and information of every human mind that has ever existed. The information isn't lost at death, but rather "uploaded" and saved, like backing up your computer data, and the book goes over the story of how the over mind is realized and explored by a few humans at first, using the information sent to Earth by intelligent life on Alpha Centauri over a period of ten years via radio signals. I know it's just a fictional book, but it really does give me a framework for understanding the world around me that really appeals to me and just makes a lot of sense in some ways. It's given me much to think about, in any event.

That brings me back to the idea of "making a mark" on the world around me, though. Discount the idea of the over mind and just focus in on the thought that when a person dies a shadow of them lives on in a way through the memories of the people they interacted with. I would really like to be able to say that my interactions with the people around me left them happy and better able to cope with the harsh realities of life, you know? Because life is hard. Really hard. Anyone who says differently is selling something. Hehehehe. (Princess Bride reference, in case you didn't catch that.) We all know at least one person who is definitely not a delight to be around, and who seems to just make everything a bit harder to bear; someone who sucks the energy and life from those around them and either doesn't know or doesn't care. I don't want to be that person. Even if I have excuses that seem valid, I do NOT want to be that person. My young life was ruled by a tyrant of that sort, and I know how miserable it can be under their thumb. I absolutely refuse to do that to anyone else if I can help it. I think I've done a pretty decent job of avoiding that pitfall, even with my new neediness that came with the nosedive of my health. Perhaps my "mark" is simply that I made some people happy some of the time, made their lives a bit easier, even? I mean, in a first world world, what else is there?

So I'm turning 28. My husband will be 30 next month. I remember the days when 30 seemed so old! My girlfriend is even older than my husband, if you can believe that. Age never really mattered much to me as much as personal maturity, although I do tend to have a thing for older men. Daddy issues, most likely. I'll own that. lol. So I guess that's it. Just some musings on my life and what I hope I'm doing with it. At this point I don't feel like there's much I can achieve anymore beyond interpersonal goals. I'm just too damn tired. Somehow, I have to make peace with my multitude of dreams and my achy, sleepy reality. I have been doing "better" the past couple months, though. I'm starting to feel like myself again, really and truly. An altered version, no doubt, but no one stays a static version of themselves forever anyway. I'd be altered no matter what.

I've started going for walks again, though, and I get out of the house twice a week regularly, once for grocery run with Corey and once for coffee date with Saka. I've even stopped throwing up all the time, thanks to a lovely med they give chemo patients! I have to take it consistently, though, or else the nausea sneaks up on me really fast and I find myself on the couch clutching my vomit bowl within a span of ten minutes from feeling fine. Gotta keep it in my system. I can't help but laugh sometimes at how different my every day life is from what I'd ever imagined it being!
No artsy cafes or guitar in the park, no challenging classes out at the college with a yoga session afterwards.
No five mile walks in the muggy warmth of a summer's night.
No swell of a pregnant belly.
No certificates of continuing education, no job, no paycheck.
No numbers in my savings account.
No trip to Europe, touring art and culture and food.

There are losses, to be sure. I gotta quit that or I'll start crying. But hey, everyone has losses, and everyone has gains, too. I know I'm better off than I was a year ago, and for that I'm very thankful. Here's to another year of, um… tea and Netflix! Yeah! And a circle of good people who love me very much. That's always a good one.

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.

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 feel like I've been gone forever from the good ol' blog. It's only been 20 days, but that can be an eternity. I would explain everything that has gone down, but in the words of Inigo Montoya, "No, is too much. Let me sum up."

First of all, the appointment at the University was a rousing success! The doctor's bedside manner was professional but kind, and he was very thorough. I came away with several new diagnoses and a heart singing with vindication that it was not "just fibromyalgia" this whole time. I'm also dealing with Hypermobility Syndrome, Undifferentiated Connective Tissue Disease, and--get this-- Inflammatory Polyarthritis. Yep, that's right. I'm basically an arthritic old woman lol. So right now it's all still pretty vague. We don't have specifics as to what kind of arthritis or connective tissue disease I have, but they took, like, 10 vials of blood, I've gotten x-rays and ultrasounds of my hands, and I go back in February to learn more about what ails me. The Hypermobility makes sense, too. Even if it's not a part of EDS, it can be a thing unto itself and it still causes insane amounts of pain whether it's a standalone or part of the Syndrome. That's where my Intractable Pain comes from, and then I have the arthritic and connective disease pain exacerbating it. No wonder I'm in hell all of the time, why I require overly strong doses of pain medication to keep my body from crashing and burning and putting me in the hospital.

Let's see, what else? Ummm… yeah, I've pretty much spent a lot of this month in bed, sleeping. My friend took me to Tucson and we made a fun trip out of it, going to spend the night with another friend of mine in Sierra Vista, and that was cool. Mostly I've just been trying to survive, buying or making Christmas gifts where I could because I love love love giving people gifts.

Funny, it felt like I had so much stored up and ready to be poured out, but I guess that's my big news. I'm still having a hard time processing the implications of new diagnoses and such, and that's made it rough. In addition to that, Corey's youngest sister passed away a few weeks ago, and that's been really hard. The week that we were making arrangements was the most difficult of all, I think… and I've definitely been taking it harder than Corey. That's fairly normal though, I suppose, at least for us. He doesn't really go in for the whole "displays of emotion" thing, whereas I can't help it. We inherited her young snake (because her dad had no idea how to deal with a snake and didn't want to), and the first time we went to feed her it was a "pinkie", or a baby mouse that has no fur to speak of and hasn't opened its eyes yet. They're small, and we weren't sure how big of a mouse Lemon, the snake, could handle. I was very upset seeing the little guy being sacrificed like that-- it's always harder for me the younger they are-- and when Lemon attacked it wrong and tried to eat it while it was still alive (she's still young and not too good at this yet), I lost it and fled to the bedroom, sobbing. Corey came in a bit later and made sure I was alright, but truthfully he found it a bit amusing. He has some dark humor like that.

So it's kinda been a hell of a month. In addition to all of that, I had some not-very-good pain killers to try out this month, which is what led to the "surviving" part. The spending most of my time sleeping thing is, apparently, an automatic response to grief and excessive stress. However, Corey has been more affectionate and interested in our relationship. I think that the conversations we had made a difference for him, and I know that it got me thinking more deeply. I think the sudden loss has made him more attentive toward me as well, because he is sensitive toward my moods and making sure that I don't fall too far. I love that man, I really do.

Tomorrow is Christmas, and it'll be the first one in my life that I can recall not spending with my mom and siblings. Corey doesn't celebrate holidays, and I'm a bit of a grinch myself, but there are some things about certain holidays that I like and Christmas holds a few favorites. I like lights and Christmas trees and gifts and family. I wasn't able to make any of that happen this year, though, because I'm just too sick, exhausted, and whatever to put forth the effort. I will be having dinner with my grandparents tomorrow afternoon, so that's something. I'm pretty sure they have a gift for me, and I have something for them that I made, but they're really not putting effort into it either because all of the grandkids are gone or grown… kinda makes me sad. But my hopes are that by next Christmas I'll have the vigor to make some effort toward the things that I love, maybe even be able to travel again and see my folks. I really hope so. I hate living all the way across the country from them.

Today wasn't too bad, though. I got a massage, slept, ate cake, and watched How I Met Your Mother all wrapped up in my electric blanket on the couch. Not bad at all, I'd say, though much different than I've spent my Christmas Eve's in the past. I'm hoping to "make" Corey take me out to see some of the impressive Christmas lights tonight after he gets home from work. That'd be neat.

So today is the day. I'm headed to the University to see the good ol' doctors and hopefully, hopefully get some answers, maybe move forward an iota in this journey. My friend drove me, and we've been having a grand old time. She's a pretty new friend, but we've bonded quickly and have a lot in common. I really enjoy spending time with her, and she doesn't mind driving me these long distances so it's a really good symbiotic relationship.

It has been so long since I've gotten out of the house and just had fun, but when I'm out on road trips with Cheryl we have fun! Granted, they're medical road trips, but who cares? We went and got pedicures last night after getting into town because I've needed one desperately for some time. The bottoms of my feet and my heels were dried, cracked, peeling and bleeding but I can't reach my feet to take care of them anymore. (I can't soak in the tub any longer either, because I can't get myself up and out; it's too painful and difficult.) I haven't been able to bend like that for some time, just because of the spine and ribcage and stuff, and I have more difficulty bending my knees now. I ask Corey to help me now and then, but he blows me off because he doesn't want to do it, like most of the things I ask him to do for me. Massages are the most frequent request, but he finds them boring and so it doesn't happen. I'm hoping that he can learn to grow and change with the situation and become more proactive, more helpful. When we talk sometimes he says that he doesn't know what to do to help with my pain or other troubles, but that's not the truth. He knows, because I tell him. I ask for things, I don't just assume that he knows what I need. He just… doesn't wanna do it.

Cheryl and I have been talking about a very wide range of things on this trip and I've gotten to vent about the hurt and frustration I'm feeling in this season of life. It's not just one thing, of course, but a whole kaleidoscope of minor and major stings and slashes and bruises. I'm just trying to make things better. I hope it works. The best thing about our conversations that range all over is that not only are we so much alike but she understands from the chronic illness standpoint as well. Her disease came out of a long remission about 4 or 5 years ago, so she's feeling the sting of losing the normalcy and routine of the life that you lived and maybe loved. I'm going on 3 years and I still have a hard time making heads or tails of it. Yes, Friko, there is more to me than illness, but I just live those parts. I don't need to blog about them because they don't cause me pain, I don't need to sort through the feelings. A lot of who I used to be and what I used to do is gone, though, and I'm trying to figure out what fits in the gap. It hit me like a brick last week to realize how dependent I've been forced to become and that just galls. I was such an independent woman, a "doer", a travel across the country by myself, backpacking, hiking, counseling and administrating, housekeeping, job holding person who could drive herself to the store if she needed to. I can't do any of that anymore. I can hardly cook for myself these days, me who used to cook for our family on a daily basis. I'm a damn good cook, but it's too painful and exhausting for me to pull it off any longer.

So all of that is tumbling around in my mind like a rock polisher hard at work as I face this appointment. I have no idea what to expect, but I know what I'm hoping for. If they can actually definitively tell me what disease I have then logically there will be a course of treatment that will help me to at least stabilize, but hopefully to become functional again. That is what I am looking forward to. I resent my dependence and so does Corey. He's resorted to mechanical functioning and nothing I do can bring him out of his shell. He won't even say "I love you" unless I say it first; it's just a response. He doesn't kiss me, I have to go up and kiss him. It's like he doesn't want to interact with me anymore beyond a superficial basis-- I kiss him and tell him I love him when he goes to work, I kiss him and tell him I'm glad he's home when he comes home (all true, by the way). We'll fix ourselves something to eat, watch a few episodes of whatever show we're watching together, take a walk for half an hour or so, and then he retreats to his man cave to play computer games and I do whatever it is I need to do (sleep, read, slowly accomplish some chores) until it's time to go to bed. He doesn't cuddle with me in bed anymore, either. Lately there's been a teeny bit more of that, but it's because I cuddle him, wrapping an arm around him or entwining our feet like we used to do…

I don't know if it's the truth, but I feel like the health and happiness of our marriage is intrinsically tied to the state of my health. If I can get a good diagnosis and course of treatment, I can get somewhat better. Then Corey won't be as stressed or freaked or whatever he is, and he'll return some closeness, maybe? Hopefully? I'm reminded of a time we were talking about something or other and he said, partially in jest I hope/think, "I don't want to deal with cripples," or some such. I just kind of laughed, patted him on the shoulder and told him, "Sweetie… you're married to one."

I tend to get my hopes too far up in the sky and then bemusedly wander around, dripping with my own blood, when those hopes fracture and come crashing down on me to crush and transfix me. It's kind of a weakness. But is a diagnosis of what is clearly a destructive disease really that big of a dream? I mean… shouldn't it just be kind of a realistic thing to expect from life? And so I welcome you to the times and trials of the chronic illness patient.

(If you want to hear a neat song about high hopes, check out Sinatra's song about high, apple pie in the sky hopes. It's adorable.)

I don't even know where to start on this topic. Do you know how many times I've been so devastated, ticked off, and just gutted when I find out that a person or a couple is not, underneath, the image that they presented? I can't even count. So many, many, many times I've thought that I've found a healthy and happily married couple to look up to, only to find through the course of time that they are broken underneath-- bitter fighting, ugly resentments or cold silence and miles and miles of distance, if not outright abuse. The Stottlemyers and my grandparents are pretty much the only examples I have had of functioning marriages, and I didn't even realize that my grandparents' relationship was all that healthy until very recent years.

So get this-- in our circle of friends, Corey and I are the example, the Westley and the Buttercup, the happy, healthy, functioning marriage. And it's true. It is. Or, at least, it was… because how do you admit to yourself that you're not happy with where things are at in your marriage, much less bring it up to your partner? But that's exactly what I did this weekend, and I feel good about it. We're talking, our communication is still wide open and blazing, and it's not like we're going to split up at all or anything. It's just… there's this distance. And there's these walls. There isn't sex anymore, or purposeless flirting… intimacy has fled, of a sort. I feel like we're just roommates at this point in so many ways, but I still love him on a very fundamental level and it still sweeps me away all the time. I know he still loves me and it shines through. (In more subtle ways than I'd like, but it's there. It's definitely there.) Plus he says it at least once a day, so there's that. Heh.

The times we've talked about it ("it" being the change in our relationship), it's basically presented as the set of diseases I have and the stress of all that is like a big ball of blah that has settled upon us and is glopping all over us like The Blob. What Corey hates the most is what these diseases have done to me. He hates seeing the change, the loss of independence, and he also kinda feels that maybe I'm a different person now than the person he married and he thinks he should feel bad about feeling that, like maybe he shouldn't feel that way, and the biggest thing is that he tries to keep all of this from me because he knows that I internalize things more than I ought to because of my upbringing and background. He thinks that I would take what he says and blame myself severely, and he doesn't want me to endure that kind of pain or to poison my mind and heart like that. He is so sure that I will blame myself and over-feel it and get depressed or so; it's sweet that he wants to protect me, but it is distancing us.

So I almost feel like I've become what I despise-- the so called healthy, happy marriage that is just a veneer for trouble underneath. I know that things aren't where either of us would like them to be, but they're not abysmal, either. It's very true, the incredible stress that chronic illness brings can break you down and tear you apart, but we are not going anywhere. Things are hard-- not only do we have the diseases and my disability and constant medical stuff to deal with, in addition to the day in, day out symptoms-- but we have major financial stress to battle with as well. I'm just super glad that we don't have debt to deal with beyond a credit card each and whatever outstanding medical bills I've got right now. It's just that my medical expenses totally ate up Corey's extra cushion money and now we're living paycheck to paycheck, hand to mouth. It's like every time he's about to even out, something comes along that screws everything up and takes all of the potential extra money (which is never more than one or two hundred dollars).

True story: I emailed my stepdad last week and begged him for money (again) to cover medical bills and such, as usual, but I also had to ask him for grocery money because Corey had paid the mortgage and all of our other bills-- we don't have anything on the docket that is extraneous, nothing indulgent, just basic life necessities-- and he had $11 in his bank account to last us 1 1/2 weeks until his next paycheck. I believe that's the lowest we've hit so far, honestly, but it was truly unnerving. I'm not sure I know the meaning of "disposable income" anymore. From time to time I'm still able to sneak a treat in for myself here and there, but it's in the form of a $2 muffin or a new bottle of nail polish, something like that. Corey operates like that as well, but he indulges far less often. We just need an edge of some sort, just something to help us get ahead and we could do it; I know we could. That's why we are hoping so hard that I get approved for disability-- it could be that edge, that little thing that turns things around for us. I was excited when I established the Tiara Fund and donations came trickling in, but that has completely dried up no matter how much I share the link. I really did think for a minute there that the Tiara Fund was going to be the thing that turned it around for us.

I won't lie-- our life is really frickin' stressful, and I know that's why we have faded to a facade, our vibrancy dulled by the cruel, grinding rhythm of sickness and hardship. I'd like to get help for us, but where do you turn when you are the healthiest relationship you know, even if you're kinda broken? And chronic illness issues within a marriage are so, so different from other kinds of issues. I don't know what to do. I really don't. I guess all we can do is keep the communication open, keep talking, and just hang on for dear life. I'm beginning to think that I've perfected the death grip, really, but I know with a sickening lurch to my gut that just as soon as I think things have gotten as bad as they will… shit happens. I've got doctor's appointments coming up to hopefully diagnose the extra stuff beyond fibromyalgia that I'm dealing with, and I have a cold feeling of dread that I won't like the answers that I get. But then, I feel that way about everything related to my health these days anyway…

I don't want to be a facade. I really, really don't, and as a person I think I've accomplished a marvelous level of authenticity so far (considering where I've come from and the shit I've had to wade through to get here), but as a couple… yeah, I think that for now it's all about the death grip.

Corey came home a day early from hunting! So he's been around as I've been slowly wending my way through the day with the intent to pack interspersed with frequent naps. I'm happy that I got to see him before I take off for a week, but it would have been okay had we missed each other like we thought we were going to as well.

I was in bed, just on the edge of slipping into the depths of real sleep after a phone call had awoken me, and I heard the front door open amidst shuffling sounds and a muted jangling of keys. Confession: I can't stand to be encumbered by layers of fabric when I sleep, so I didn't feel that I could jump up to investigate in naught but my birthday suit! I lay there drowsily alert, trying to decipher activity based on the carrying sounds when Corey breezed into the room, all salty, sweaty woodsmoke smell and smiles, bending over the bed to kiss me. It was a warm kiss, but something was awry-- he was eating  licorice!!! (I despise and detest licorice, especially the black kind! Oh, and he knows this quite well.) I determinedly kissed him anyway, but exclaimed afterward how cruel and gross he was, and he grinned and laughed and got a kick out of that.

The day has been a long, slow one. Much resting on my part, and the essential absence of any kind of deadline for being packed or leaving today has been a welcome knowledge. I fell in the shower today when I tried to sit on the stool I have. It slipped out from underneath me and I crashed down, banging my back on the edge of the stool's wooden seat and wrenching my hip a bit. I suppose I shrieked amidst the resounding thump and crash of the fall, so Corey came in to see if I was okay and found me huddled on the floor of the tub, unable to get up by myself and curled in a painful little ball repeating my mantra of "Owwwww, owwwww, ouch, owwww….!" He helped pull me to my feet and I was suddenly incredibly grateful that he'd come back a day early.

My sister in law accompanied me to dinner with the friends of mine that I celebrate the Anniversary with, and we all had a nice early supper at Olive Garden to celebrate the Anniversary. Everyone got along well, which is good. I was not really worried because C is a very charismatic and personable person, but she's not religious at all and my friends are, so I was hoping there wouldn't be a clash of interests or basic world views. We stayed away from the religion topic, though, and all was hale and hearty.

After coming home and all relaxing with books and television shows of choice for a while, I convinced Corey to come cuddle with me as I was going to be falling asleep for a bit (maybe the whole night, maybe just a few hours? I have no clue at this point, though I'm rather hoping for a whole night's sleep). We lay there in the dark for a bit, talking about his hunting trip and how it went, but soon the conversation ebbed away and I found myself dozing off. Just about then Corey got up and left the bed and I was very disappointed that he'd get up and leave just as I as falling asleep. What a super awkward moment to disappear, right? I vocalized my disappointment, but it turns out that he was just closing the door that had been propped open so the cats could come and go as they please. He came back to bed to be with me again and, well, all I have to say is that conjugal relations are awesome, and even if it's been a long time and you feel like a broken record by coming on to your partner again and again without apparent success, keep at it. Keep at it only if you mean it, though; when the time is right a lovely experience will unfold.

I'm gonna come straight out with an honest, brutal truth here that some people may find uncomfortable talking about: stress kills sex drives, and lowers intimacy if you let it. Truthfully, it has been a long time between the last time we were intimate and this time, and that's because we are frazzled a great deal of the time. Sex involves and requires a lot of emotions, and a lot of energy too, and when you're dealing with a mountain of stress being poured over you like a thick, viscous pudding it's really hard to dig up the motivation to do something that isn't "vegging", you know? For me, having sex actually helps me to cope with stress better and it alleviates my depression and anxiety to a degree, but my husband finds himself more drained by the act than I do. I'm revitalized by sex, but he is exhausted. I have a higher, more demanding libido than he does even when things are normal and especially so when things are stressful and out of sync, so that's something that we have both become aware of and keep in mind. It took communication to reach these conclusions, but there was a period of time where I was hurt and confused by his constant rebuffing of my advances; I thought that he no longer wanted me in that way because I had gotten sick, or that maybe he didn't find me attractive anymore, or that he was afraid to hurt me, or that he really just didn't care about me much. I was so wrong, but you can understand how an almost daily (or several times daily) rejection of a flirtatious sexual advance can give the impression that one is unwanted by and unattractive to the object of the flirtation.

Sex can be a huge source of assumptions, miscommunication, frustration, and simmering resentment, anger, and bitterness, and sometimes it's awkward to talk about but you just gotta do it for the health of your relationship. I'm serious. (Plus once you get the kinks worked out and both partners feel understood and validated, you can get some serious toe curling action up in there! If that isn't worth it, I don't know what is.)

Now I'm going to attempt to sleep (again, for however long) and ignore the steadily mounting pain. Falling in the shower and banging yourself up does nothing to alleviate an already worsening flare. Maybe the fatigue will overpower the pain, yeah? Funny how you can play one symptom against another to achieve a benefit to yourself, huh? The Monopoly of Illness, or some such.

So it's been a while! After a while, news builds up and becomes all the newsier, meaning that I'm really doing everyone a favor by waiting a long time in between posts to make sure that I actually have something to talk about. The problem is that life just keeps happening, no matter whether I'm writing or not, and as it all builds up and builds up the thought of writing about it becomes more and more exhausting until I've totally talked myself out of it! Or sometimes I'll talk myself into it, but forget the most important parts lol.

So what's been going on with me? Well, I saw the head doctors, both of 'em (neurologist and psychiatrist) and I'm trying out two new meds. The one from the head shrinker is a mood stabilizer for Mood Disorder Not Otherwise Specified (because I'm too complex to just label with bipolar or manic-depression, of course!) and it has the potential to make me quite depressed. I've been feeling that for sure lately, though not entirely certain it's med related. I was having problems with depression at least a week before I saw the psych, and it only got worse for a while there but it feels like it's easing up some. Now I'm struggling with sleep problems. This could be related to an interplay between the new psych med and the mild sedative from the neurologist to keep me from twitching, but for a few days at a stretch now and then, and for past several days right now, it seems that I can't stay asleep but I can't stay awake either. The result is a groggy, drowsy, constantly nodding off lady who wakes up to find herself doing random things or finishing sentences that make no sense at all and have no bearing on what's happening around her. I'll have a thought process going on that is much like the thought processes you have in dreams, so very disjointed and unrelated to reality, but I'll come back and "wake up" halfway through or right at the end and say the last part out loud… but realize as I'm saying it that it's thoroughly nonsensical. I was talking to Bob Cat earlier today before hopping in an Epsom bath for my legs and was saying something about how it wasn't going to happen until I'd swallowed enough jade. It made perfect sense until I woke up at the jade part and finished my sentence, with a mental image of myself downing handfuls of jade beads like they were prescription pills! Crazy.

So there's that, and I feel like I'm going crazy and my days are just a muddle of nonsense, but when I'm "sober" I'm doing quite well. There's a storm front that moved through last night and today and I am definitely feeling it! I'm taking my regular strong pain killers, plus a couple extra (since I now have that luxury when needed), and drinking an ale now and then to help give the pills some "oomph". I know you're totally not supposed to do that, but even with the really strong pain meds I'm at "take me to the Emergency Room" pain levels, which is saying something. Can you imagine where I'd be at should I not have the good medication that I finally have? I'd be done for.

I still think about the last few months before I found this pain doctor, and how excruciating they were, and how I was honestly dying. My body was under so much stress from the unceasing, incredibly high levels of pain and other symptoms that my vital strength was just… slipping away. Fading. My organs were shutting down, bit by bit. Blood tests tell me that the functioning is good, so I'm happy about that. I'm mostly happy to not feel like I'm fading away, to feel like even though I'm still sick and being "attacked by gremlins" (as we've decided to euphemize the situation) and that won't likely change in the course of my life that I can still participate and be a real person, not just a fading ghost or a memory of the friend someone used to have.

I have had some interesting new health news from the past few weeks of dr's appts, and that is that I have a double stranded DNA, whatever that means. I guess I have to do some more research on that one and what it can mean, but one of my lupie friends assures me that it can mean any number of things. Then there's the whole Mood Disorder thing; that was a bit of a surprise! All of the doctors and specialists I've seen in the past couple of weeks, though, have totally and completely supported my EDS theory and my work towards going to Tucson to see the Rheumatology Department there for a diagnosis, if possible. The pain doc brought up another possibility, due to my "testing positive" for Lupus again (from blood tests done just last month), and that is arthritic lupus, rather than the kind that gets in there and destroys your organs and whatnot. He is seeing more of an arthritic type of involvement with the pain than simple fibromyalgia can account for, so we'll see. I have been dealing with a very strong and potent case of pitting edema in my lower legs, ankles, and feet as well as intermittently in my hands and forearms, but I have a doctor's appointment next week to see if that's of any concern at all. 

I started physical therapy yesterday, and I can tell that it's going to be grueling but beneficial. I'll have to keep strong boundaries with my therapists and not completely destroy myself trying to please them, as I have energy barriers that most patients don't have to deal with I think, but my therapist is very understanding and good to work with, so I should be fine. We'll be focusing on my back, and also on exercises to help me lose the weight that I've gained this past year from the meds, improper diet, and a sedentary lifestyle. They will be very valuable, as I'm hard pressed to find exercise that are effective yet low impact and considerate of my physical de-conditioning. I realized during my evaluation with my therapist that I'm really a lot weaker than I've ever been.

Oh, one more "exciting" thing that happened is that my disability claim was denied. This was rather expected, as the odds of getting approved the first time through are notoriously low, but I was hoping that we might be one of the lucky ones. The "Tiara Fund" fundraiser that I started has really really helped to take some of the immediate financial pressure off of us that we were facing, and so has the monthly couple-of-hundred from BioDad, but honestly the financial difficulties haven't eased up at all. If anything, they've increased since my doctors keep adding more and more specialists to my treatment team, and while that's a good thing I just don't have the money for all of these appointment copays and the bills that follow after and the prescriptions I need to get by!  Just looking at the funds raised is kind of laughable, because what difference is $400 going to make in the grand scheme of things? And yet… it lifted a heavy burden from the Robot's mind because we were not relying solely on his paycheck for basic living expenses and medical funds. He makes enough to keep us in house and home, but that's it. If something unexpected happens, or if I need some money for medical stuff, that's a straw that'll break our little glass camel's back. Don't feel sorry for us-- we're doing just fine, and there are plenty of folks who have it much tougher than we do, I know that. It just does get tough sometimes, living with the constant stress of "how in the world am I going to pay for this?!", especially when the "this" is necessary medical help.

Anyway, enough of medical and financial woes! Exciting stuff, exciting stuff… this is getting hard to do, as I'm still in that "drifty" state where I keep nodding off to sleep in the middle of typing. It makes my words a little unpredictable in spelling, and also the content of my thoughts a little outrageous. That last sentence, for example, almost came out as "It makes my outfits a little unpredictable, but they benefit from it in the long run." I had an image of this radical blue tiger stripe tie dye shirt-dress that I was wearing instead of my usual more boring clothes, and I was genuinely excited for a moment about opening up the package and wearing it for a minute… until I realized it wasn't real and that I was supposed to be talking about words. Gaaah! Focus, woman, focus!

I have a massage in just a few hours, which can't come soon enough, as the weather that passed over brought me to the ground with pain and swelling in my legs. I tried to get Drogo to rub my feet, ankles. and lower legs, and he did so briefly and reluctantly, but he really dislikes massaging. It's like pulling teeth to get him to rub my back or feet or something. Doesn't matter that I could really, really use it or that he could be "fixing the problem" as he so loves and is deeply motivated to do, he just doesn't like it and is bored by it and so I go massage-less most of the time. I often wake myself in the night with my arms lifted above my head, massaging and stroking my hands and forearms, or my face and head and neck. It's kind of weird, but whatever. I'll get by. I always do.

I'm seriously flagging here, so I'll wrap things up by sharing the most adorable thing EVER! My friend the Artist went to a Comic Con  a few months back, and I was super super jealous because she got to meet the most amaaaaaazing people within the geek culture and see the coolest stuff, etc. etc. etc. So she paid to have an artwork commissioned for the Robot and I, but it's taken this entire time for the artist to get around to it I guess. Today she posted it on my Facebook wall, and she had some really neat things to say about it in the conversation we had around the picture itself. Another friend of mine also commented on our marriage in a very positive way, and it was very encouraging since I've been feeling a little discouraged about our relationship lately (a lot of it fueled by chronic stress, and insecurity over my appearance now that I've gained so much weight). We even had a "talk" on Sunday, which was mostly me talking at him and explaining what I was feeling and why and citing some examples and him explaining his perspective and me reordering and reorganizing my thoughts around this new information and realizing that we're actually okay after all and it was all fine and I was just breaking down under the stress is all but he didn't mind because he's awesome like that and just bore up under it patiently like he does and walked me through it. I could wish that he were more passionate in daily life, more demonstrative of deep affection and emotional displays, but it is the solid bearing up and the refusal to be flapped and bothered and moved out of place that signals his love to me, strong and sure as a beacon. I just sometimes lose sight of his particular version of affection and passion, start comparing our relationship to "others"… and let me tell you something: that doesn't work. Ever. Even if I were healthy and we did have the sunshine and rainbows that we so long for (because we've walked in a miserable, cold, rainy mist for so long now!), every relationship is different and looks different and functions differently, and my main concern ought to be "Are we healthy? Are we okay with us?" Because that's what's important. It's not important whether or not he does _____ like so and so does (although that would be super cute and sweet and nice), it's important that he is still here, and not going anywhere, and that he still thinks I'm pretty and that he believes that I can still do things but he also doesn't hold any illusions about what I can no longer do and he keeps me from sailing off of a cliff with the best of intentions to carry me forward. The picture that my friend commissioned, it's… well, it's perfect. It's us. And seeing it, reading her description of her hopes for its creation, really helped to remind me that what we have is perfect for us, and we have made no mistake in coming together and creating a life that is a blend of the two of us. We have done just what we needed to, and that's beautiful. We're beautiful. And seeing us from an outside perspective did a little something inside of me to push away some of the stress and make a cozy little space where I could just nestle down and really see and appreciate the beauty of what and who we are as a couple.

Without further ado (because I'm totally rambling now), I give you… the Robot and his Lady!

My friend the Artist (not the artist who drew this), says, "I know the one thing I really wanted out of this, was to show that through the ups and downs of stressing over bills, you battling your illness and Corey stressing over how to handle things, that no matter what you guys can make it. And together you guys make a great team, warriors and lovers, conquering any obstacle that comes both your way. I remember paying her during the time when I was up in phoenix when you were going through at lot when I was reading your blogs. So I figure this would be a perfect gift for you guys. and I am very happy how well she was able to illustrate in what I wanted." My other friends said, "Oh my God this is perfect," and "JFC that is so Corey. Look at that leer."

In addition to those little gems, the "this is perfect" friend and I were having a conversation and my sex life came up as a topic. She had this to say, which (combined with the picture and sentiment behind it) totally cemented my faith in my relationship and its unique power and beauty.
"You two will be fine. I personally find that sex is best with a person you already fiction well with outside the bedroom, and you two are made for each other. Inviting someone to come over and play is a unit decision, a group activity, and only works because you two are already perfect together on That level. You'll be fine."

Yep. We are perfect together, and no matter what we can make it. We are warrior-lovers! The Artist also said, "And during the time I was reading the blogs up in phoenix, I felt really sad and helpless not being able to somehow get rid of the depression and the stress that you were going. So I figure I ask this, that way it shows some happiness that it can bring about through trouble times. I mean I can choke illness out of people, but I do much best to try to create something or think of something to present as a gift through help of others such as this artist or form a gift by myself. And of course I did my best to pay whenever money I had for the sushi up when you had your doctors visit. But yeah, I am going to cry up a storm here when I keep talking like this. Anyways you have amazing friends that have your back, how about that :)."

And she's absolutely right. With the Robot/Drogo firmly ensconcing me in his arms and my amazing friends at my back, there is no way I can not kick ass as I live life facing the gremlins. My various diseases may never go away and they may never be totally tamed and managed, but I'm not going away or being tamed either. I will continue to wear my tiara to doctor's appointments and to paint my walker bright colors to cover the shame and anger I feel at having to use it. I will prevail, and I will do so with or without this elusive thing called "sleep"! For now, though… I'm going to try to catch some. :)

Guess what, y'all? It's National Invisible Illness Awareness Week! I'm about half a week late on this, because, guess what else? Yeah, that's right-- I was busy being sick with my invisible illnesses ;) Funny how that works, ain't it?

Anyway, I'll be catching up with a few little things here and there that other bloggers are doing to 'celebrate' this week and to bring awareness to invisible illnesses and what life with them is like, but for now, all I've got is a post from my other blog, the more public one, that gives a little insight into what life is like for the invisibly ill. It's hard to deal with diseases that no one can see, and ones that aren't main-stream, popularly accepted diseases like cancer or ALS or autism. ALS and autism have some symptoms that are on the more visible side, but for the most part they suffer in relative anonymity.

When you have an invisible illness, it's easy to judge and be judged. "But you don't look sick!" I know, I know. In fact, I look pretty good, if you discount the weight gain. (Some would even say that I look better now, with the extra weight and curves, than I did before!) But the suffering is just as real, just as valid, as someone with a broken leg or a shattered spine. My disability is just as devastating and pervasive as anything else you can think of, but I don't have the "legitimacy" of a cast or an IV pole or something tangible that signals I've got a terrible reality squatting on my shoulder at all times. I suppose that I'm "lucky" in that I need my walker, the Bling Chariot, to get around outdoors because it lends me an air of disability that wouldn't be there if I simply limped around and sat whenever I got the chance. People often ask me if I've had surgery or injured my leg somehow, though. When you see an otherwise healthy looking young woman your first thought will probably not be, "I wonder if she is dealing with crippling physical symptoms that have totally devastated her ability to participate in society in a regular manner?" I think that now, when I see people with a particular gait or look on their face. I watch people much more closely now, and I understand a bit more than I did previously, but here's the thing: until you or someone you love has experienced something, you just aren't going to think about it. You don't know, you don't know a damn thing, and you really can't. And you know what? That's okay. That's okay because how could you possibly, unless someone explains it to you?

That's the whole point of Awareness Weeks. People don't know, they don't understand, because it's not visible and it's not obvious and if you haven't had experience with it you could never, ever guess what it's like and what we face. I didn't know. I'd never heard of fibromyalgia or chronic pain or connective tissue disease or Addison's or thyroiditis until they all happened to me. Food allergies I'd heard of, in passing, but I didn't know anything about them until I was forced to, for my own survival. I was told by a doctor yesterday that I am one of the most well-educated patients she's met, and though it's not the first time I've been told that by a medical professional it always shocks me. Shouldn't at least the people who have the diseases care? Shouldn't they want to know, to learn, to be as in control of these crazy diseases as you can via knowledge? But apparently many choose the path of ignorance, even when their very own body is on the line.

In closing, I can tell you that some of the most moving and profoundly meaningful things I've heard since I got sick came from family and friends who have told me that when they learned the name of what I have, they went and researched to understand it better, to understand me and my new reality better. My friend, The Artist, shares stories with me about how she defends me to friends of hers that see my comments and posts on Facebook through her account and question the veracity and legitimacy of my claims. Am I faking it for attention? Exaggerating? Fibromyalgia is just a "throw away" diagnosis; it means the doctors don't know what it is and they tell you that to keep you happy. She's probably not as sick as she claims to be. And so on. But this girl stands up for me, she calls these friends of hers out, and she shares what she's learned from me and from her own research and she shuts those kids the hell up! And it melts my heart with gratitude and something more, every time. It reaffirms my value as a person, as a friend, and her trust in me and the self that I present to the world. In short, her bringing awareness to others on my behalf validates me entirely, and our friendship to boot. It totally almost makes me cry every time I hear about it.

Personally, I think that's how awareness spreads the best-- through the personal connections. I am not going to stop sharing the hell out of articles and pictures and blog posts on Facebook, but it's the personal connection I have with my friends that makes them want to read the articles, to learn more, and to pass on the information to others when they hear ill-informed opinions being bandied about. Truthfully… I'm super humbled by the friends that have stepped forward to be by my side for this lifelong fight I'm enlisted in. There's no way, absolutely no friggin' way, that I could do this well in isolation.

With that in mind, happy National Invisible Illness Awareness Week! May our friendships and relationships be sturdy and true, and may they lead to greater awareness in others… and within ourselves.

Right now I'm in "anger" and possibly "denial". I'm so pissed off at what I've lost, what I have to deal with, what I must endure… I'm just sick of it. Honestly, I'm SO over this.

I continue to deteriorate, despite my best efforts. I can't remember what it's like to have a normal, healthy day. The last time I had a day that I could consider "good" (read: less pain than usual, no limping and stiffness, no flu like symptoms to speak of) was… the 2nd week of April. The weekend that my friends came and cleaned my house for me.

I keep racking up new symptoms, tallying up the worsening of existing symptoms, and I continue to battle the medical system for appointments and diagnoses and whatnot. I am very pleased with the pain doc I finally found, and I think it's going to be a beautiful, long-term relationship.

But seriously… I just have this deep seated anger that I can't shake. What I'm going through isn't fair, it isn't right, and I'm just too young and generally amazing to be incapacitated so! There is so much that I could be doing to better the world around me, but what am I doing? Lying in bed, posting inane things on Facebook, and sleeping (or not). I feel like my life is being wasted, frankly… and that pisses me off. 

I had such promise, such dreams, so many talents, and they are being wasted. I don't feel like I'm contributing anything of worth to the world, or even the relationships that I hold dearest and closest. What do you do when you feel like your life has lost purpose and meaning? When you feel like you have lost purpose and meaning?

It's like… I still have these shreds of rebellion and hope that refuse to die out, but I'm not sure how to feed them right now. I'm just so… lost. I realized the other day (or was it today?) that even when we get my pain under control and some/most of my symptoms managed and handled… I will never go back to "normal". I guess I've been holding on to this fantasy that when I can finally get my pain managed that everything will stabilize and that I'll go back to being the same bouncy, energetic, productive person that I used to be. It's finally hitting me that my life is forever altered. I have no idea what my future looks like-- will it be full of the same untold suffering, day in and day out? Will I ever have a recovery to speak of? Am I going to spend the rest of my life just surviving?

Hell, I don't even know how to adequately articulate all of this. I can't explain what I'm feeling, because I really don't understand it myself. I just know that I'm angry, very very angry, and very sorrowful. I worked so hard to come to like instead of loathe myself, and now here I am again… I feel like all of my hard work has been undone, because I really don't like the person that I am right now. I mean, I like who I am inside well enough, I guess… I'm okay… but I hate the life I have now. I didn't choose this, I didn't ask for it, and I don't want it. Why me? Like, seriously, what the fuck?!

I'm also super pissed off at what this has done to my marriage. We're making it work, and we definitely love each other and all that jazz, but honestly it's hard. Marriage and relationships are hard to begin with, especially when you've got the baggage that I do, but with all of this chronic illness shit on top of it? It's like the odds are stacked against me so high and rising that I can't help but feel I unwittingly made an enemy somewhere who's in charge of all the cosmic, circumstantial shit. I hate how stressed Drogo is, I hate that the stress has killed our sex life, I hate all of the bills piling up and how inadequate it makes him feel when it's no fault of his own at all (and when he's actually borne up under this remarkably well!), and I hate being "that couple" that always has to ask for help from everyone around them. I hate that we don't have many friends, that we can't go out and do fun stuff, and that it's just such a struggle for so long. We have this morbid inside joke that we're ready for our sunshine and rainbows now! Any day, really. lol. But it's the truth. This is just so hard, on so many levels, and I'm sick of it. It's hard enough to have all of the sensations you experience be unpleasant ones day in and day out, but on top of that there's all of the emotional agony and stress to just exacerbate things.

I also hate that I'm fat now. Yeah, yeah, I'm still attractive, blah blah blah, but I'm over 200 lbs now. I have never been this heavy in my life, and it pisses me off to NO END that I try to eat well and I exercise as I can and I got off of the stupid meds that were helping me to gain weight, but I just keep gaining and gaining and I don't see much I can do different at this point. I mean, it's not like I'm eating any junk food at all. We spend $50 on groceries each week for both of us, combined, and Drogo is practically starving (I feel) to make sure that I get enough to eat. He is starting to realize that he needs to eat more, thank goodness, but it's not so bad because he's always been a rather spare eater in general. But I hate that he has to make that decision, and that we have to clip coupons and be so spare and careful in our choices because we have so many fucking bills to pay. I'm tired of actually coming up against the decisions of whether to buy food, gas, or medicine.

I know I'll work through this and eventually (lord I hope so) reach "acceptance", but right now… I'm just wallowing in the anger. Maybe it'll give me the fuel I need to keep going. It's either anger or soul killing despair, so I'll choose the more lively of the two.

I feel like what I'm feeling (and thinking, when I'm coherent enough) at this point in time can be summarized by the two following Skillet songs, "Never Surrender" and "Sick of It." Never Surrender, especially, is almost verbatim what my heart is sobbing to itself. (Emphasis mine, for especially applicable text.)

"Never Surrender"

Do you know what it's like when
You're scared to see yourself?
Do you know what it's like when
You wish you were someone else
Who didn't need your help to get by?
Do you know what it's like
To wanna surrender?

[Chorus:]
I don't wanna feel like this tomorrow
I don't wanna live like this today
Make me feel better
I wanna feel better
Stay with me here now
And never surrender

Do you now what it's like when
You're not who you wanna be?
Do you know what it's like to
Be your own worst enemy
Who sees the things in me I can't hide?
Do you know what it's like
to wanna surrender?

[Chorus]

Make me feel better,
You make me feel better,
You make me feel better,
Put me back together.

[Chorus]

Put me back together,
Never surrender,
Make me feel better.
You make me feel better,
Stay with me here now,
And never surrender.

"Sick Of It"

If you're sick
If you're sick
If you're sick
If you're sick of it
If you're sick
If you're sick
If you're sick of it!

When everything you do
Don't seem to matter.
You try but it's no use
Your world is getting blacker.

When every time you fail
Has no answer.
Every empty promise made
Is a reminder.

No one can make this better
Take control, it's now or never!

Are you sick of it?
Raise your hands,
Get rid of it!
While there's a fighting chance.
Are you over it?
Bored to death?
Have you had enough regret?
Take a stand, raise your hands...

If you're sick of it!
If you're sick
If you're sick
If you're sick of it!
If you're sick of it!
If you're sick
If you're sick
If you're sick of it!

Every single day
I chase my own tail
Like a rat inside a maze
Gotta get, gotta get, get away

I'm running out of time
For me to break this.
I'm tired of feeling like
I'm never gonna make it.

No one can make this better
Take control, it's now or never!

Are you sick of it?
Raise your hands,
Get rid of it!
While there's a fighting chance.
Are you over it?
Bored to death?
Have you had enough regret?
Take a stand, raise your hands...

If you're sick of it!
If you're sick
If you're sick
If you're sick of it!
If you're sick of it!
If you're sick
If you're sick
If you're sick of it!

I'm tired of it
I'm over it
I'm bored of it

Gotta fix this
I'm sick of it!

Raise your hands
If you're sick
If you're sick of it
Raise your hands
If you're sick
If you're sick of it

Sick of it!
Raise your hands,
Get rid of it!
While there's a fighting chance.
Are you over it?
Bored to death?
Have you had enough regret?
Take a stand, raise your hands...

Are you sick of it?
If you're sick
If you're sick
If you're sick of it!

Get rid of it!
If you're sick
If you're sick
If you're sick of it!