Daydreaming

You know what would be nice? I mean, besides living in Id again... (although this daydream takes place in Id...)

On a day like today, when I'm feeling fully blerghity blergh crappy, but not in enough actual pain to require the blessed release of (effective) painkillers (yet), to have someone show up on my doorstep and be like, "I'm here to take care of you today."

They'd do my dishes, make me something light, tasty, and nourishing to eat, and they'd ply me with herbal teas sweetened exactly to my liking. Oh, and make sure that my meds were taken at the right time.

Then, after we'd both been properly nourished, they'd bundle me up all comfortably into their vehicle (because it's a lovely spring day in Id in my mind, remember) and they'd take me for a scenic drive with the windows down and maybe some pretty solo piano music playing in the background. No pressure for conversation, though we'd be chatting and laughing, I'm sure. Since we're in Id, we'll stop and pick some blackberries or thimbleberries, or splash around in the icy river briefly, just breathing in the sweet, crisp nectar of the golden air and enjoying the rush and hum of verdant life.

After a quick stop to grab some sushi to go, we'd head to a park and take a nap under the cool shady trees, maybe feeding a squirrel or two... (And did I mention that there was Az green tea involved in this whole adventure? And that I don't have to go to the bathroom ONCE in this daydream? Now I know it's a fantasy! LOL)

By now, I'm thoroughly exhausted I'm sure, so we head back to my house for an evening of popcorn, movies, and more herbal tea. I'm swaddled comfily on the couch in blankets and propped up by pillows, and I'm dozing on and off at will with nary a problem or concern about "entertaining" my friend.

In reality, though, that's not gonna happen. I'm not back in Id, no matter how much I wish I were. (The things we do and leave behind for love, I swear...)

If I were to craft a more realistic daydream, it would be this:

Friend shows up and says "I'm here to take care of you. I'm going to make you chicken noodle soup and grilled bell peppers, and I'm going to unpack your boxes and do your dishes and mop your floor and you're going to sit on the couch all swaddled (or unswaddled, as the temperature variances of your body dictate) and you're going to keep me verbal company and that's it. And if you need to, you'll nap while I do all those things. And then I'm going to magically produce a pizza that you can eat, and we're going to watch funny, inane, probably chick flick movies together. And you're going to drink herbal tea and take a nice hot soak in the tub and then when you are done I'm going to massage your feet with soothing essential oils and paint your toenails."

Hell. Yes.

Too bad none of that is realistic in the slightest. But, hey... that's why they call them "dreams", right? :)

How do you accurately convey the ever-changing blend of, "I'm optimistic, I'm a fighter, I'm a warrior, and I'm not going to let circumstances out of my control get me down" and "I'm really tired of this and wish I didn't have this fight to fight anymore"?

Hurting today, from the moment I woke up. I'm not surprised, given that I was in the Urgent Care/ER for the better part of Thursday night and the wee hours of Friday morning for uncontrollable full body tremors/spasms. They think it was a rare reaction to the gabapentin, but don't really know. All I know is that they pumped me full of Valium (twice!) and I spent the next 24 hours drugged and woozy. My muscles are sore from the hours of tensing and spasming (and where they stabbed me with those super painful needles), but that's better today. It was just a weird, weird experience. I thought I'd up and gotten MS or something. I wasn't scared, but I was apprehensive... and all I could do was crack jokes at any and every opportunity. I'm not sure C appreciated that one much. It was hard for me to know how to relate to him, because he was... well... not worried, per se, because it was clear that whatever was happening was not life-threatening or injuring me in any way... but he was definitely concerned. Pacing. Watching me. Holding me and stroking my hair, my back, my hands, making sure I didn't shake right off of the chair or bed when the spasms would get particularly violent. Holding me up so I could "walk" to the various rooms/clinics/etc. Carrying me into the emergency rooms in his arms (and scaring the nurses because they thought I was seizing!! LOL) He sat there with me the whole night, solid as a rock. It was a comfort to have him nearby, especially when I finally slipped into sleep in the wee hours of the morning.

In any event, the rheum told me the other day to try the tramadol again for a few weeks since the Ty3 makes me sick, which is basically a "death sentence" for any kind of hope for relief from pain. I took 3 at one time last night, as well as two individual hot soaks, trying to get the pain down to an "I can sleep now" level (because I was still soooooooo tired!), but it took a really long time, some extra stretches, and my Yoga Pandora station to finally get me drifted off to sleep. It never did knock down the pain, really. Once I was out, though, I was out.

While I'm bummed that I missed C's only day off for a while by being completely loopy and woozy, the day before was actually a nice day. I was not feeling well, so I asked M if he would drive me around to get my errands done. He came by to be my chauffeur, and we had a grand old time. I enjoy conversing with him, and we have a lot in common, I think. We both love music, although he is much more accomplished and intelligent than I am in that area, but I think I'm gleaning things from him about music theory which I'm grateful for. We even ended up at Goodwill, and he threw some money at me in the form of buying me some well-loved books I stumbled across. I was guilty-grateful for that. (Yes, still with the same guilt issues that come from being there when people spend money on me. I firmly believe that it's got its roots in some self-worth issue somewhere, but I don't have the energy to try to root that one out right now. I'm tired.) I think I told him several times, though, that I just plain had fun. I haven't gotten out of the house to do anything with friends for a while now, and it was really just enjoyable. I felt almost normal for a while there!

It wasn't until both M's had cleared out that evening and I wandered off to bed that I began having the full-fledged full-body tremors, though I had been extremely fatigued that entire day. I just don't know what's what and related to what anymore. Who cares? I just know that I'm really tired today, I'm hurtin' like a big, pulsing, electrified bruise, but I'm also strangely optimistic.

Yes, I'm tired of dealing with the pain and such, but something that M told me while we were discussing it gave me a lot of hope. We were discussing how, on the whole, I have made steps forward in regards to dropping pain levels. (I have! I have! When you look at it over the span of months and months, I can see myself inching forward!) Yet, at the same time... I am oddly fearful of "getting better". I know that with the autoimmune stuff and with something chronic like this, I'll never be totally free. I won't. And while that's comforting because it lets me know that I wasn't just malingering for a season of my life and exploiting those around me, on the other hand it's kind of depressing. I still struggle with that black and white mentality so much, though, that it's either I'm "sick" or I'm "better". So if I get "better", then I was never really "sick", now was I? I mean, I could have gotten better at any time I chose, right? So it was my fault, then wasn't it? But if I never get better, then that validates the understanding that it's not my fault, that I'm not choosing this, and that I am trying my best, really.

I didn't articulate all of that, but touched on a few things briefly. Anyway, he pointed out that when I'm better I'm still just going to go out and help other people who are struggling and fighting in the way that I am now, and I'm still going to be kicking ass, so why worry about it? It made me think of the HJ, the work I'm doing now... how being in a better place, being in an awesome healthy relationship, doesn't mean that I was never abused. Hah! Right. That's laughable. But I can turn around and help others who have gone through similar things the best that I know how. I guess it's the same.

So while I'm whimpering and licking my wounds and thinking "good grief this sucks, I'm so grateful for pain killers!", I'm also thinking... "You know? I'm pretty badass, especially on tough days like today. It's so easy to be happy when you're not hurting. It's days like today that remind me I'm a warrior."

I hope I can remember that throughout the rest of the day. The morning is young, yet, after all...

And yes, I know you're reading this. So thanks, M. You were more of an encouragement than you knew.

Note: I learned another step in a valuable lesson yesterday, too. I can ask for help, and people will respond and help me. And it is not an imposition or a burden. If it were, they would say no. How do I know this? Because I am careful to surround myself with healthy people, or ones that are trying their damndest to be healthy and whole... and that means that our friendships and relationships are also healthy. And that means no manipulation on either side. And that means that asking for help? It's really just asking for help. And the help that is given is given freely, because we're friends.

Now that's a cool place to live.
So. The weekend.

The morning that I was supposed to leave, I got a call from the car rental company about half an hour before R and I would go pick up the car. Apparently they were all rented out and had no cars available. I called R and told him what happened, and he showed up on my doorstep to pick me up and go see what we could scare up. Thus began a two hour hunt for a rental vehicle. Apparently there really aren't that many rental cars in Y, and the ones that we could find, well... we kept hitting snags left and right. For one reason or another, two places weren't able to rent to him, which would have saved us, oh, an hour and a half, but... it was a fun/interesting time of riding around with my new father in law and getting to know him a little better. It's not like we talked about anything deep, but it was just... enjoyable. I'll freely admit that I've been intimidated by him in the past, not because he's scary but because he's so... robotic. (Wonder where C gets it from? LOL) I am naturally pretty good at making friends, but in the past he just didn't really engage, so it was unsettling for me. Now that he and C's mom are divorced, though, he's actually happy, and that makes all the difference in the world. So despite the frustration of delays, it was a rather enjoyable time.

I finally got on the road during the heat of the day, which made me SUPER grateful that I wasn't in good ol' Shenadoah, because she's already running hot. I ended up with a Mazda 5, which was sweeeeeet! I've never driven that nice of a car. *sigh* It makes me want one of those new-fangled fancy new cars. The drive itself was uneventful. I stopped at a rest area with nice grass and trees to eat my lunch of watermelon, and I needed to stretch out my aching limbs so I ended up doing some yoga right there on the grass. Funny thing was, I didn't even care if anyone saw me! I used to be so self-conscious about so many things, but I find that as I gain confidence within myself and just do what I need to do, I worry less about what others will think. This is a gift that chronic illnesses and healing from abuse have given me-- learning how to do what is needed for me and not worrying about others unduly. I need to follow my own healing journey in my own time. Of course, there should always be a basic respect for those around you. I'm not advocating narcissism, here! Just a healthy sense of boundaries and self-confidence.

Upon arriving at the hotel, I brought my bags up to the deserted room (C and the girls were at a pre-service for D that I missed because of the timing of my trip, thanks to the car snafu) and proceeded to crash for three hours. Apparently driving wears me out more than it used to. I'm not surprised. I doubt I'd be able to pull off the 24 hours straight trip to Id anymore. When I woke up from my nap, I read a book (A Game of Thrones!) until C and the girls trickled in. They were exhausted, both from their long trip down and from the emotions of the service. We all got ready for bed while chatting among ourselves, and let me tell you, it was so good to be around them again! It was easy to fall back into the routines and rhythms of getting ready together.

That night, however, was a loooooong one. I could not sleep. I dozed fitfully now and then, but sleep was not forthcoming. Early in the morning I took a hot soak in the hotel's deep tub, which relaxed me enough to finally sleep for an hour before everyone was up and getting ready for the day. Surprisingly, I made it through the whole day and into the afternoon before getting dizzy and lightheaded from fatigue, at which point I napped in the church sanctuary until it was time to leave.

I'll be honest and admit (again) that I've felt pretty isolated during this whole process of grieving D. It seems that not many people know or understand that the S's thought/think of me as part of the family, so I'm just that girl that lived with them for a while. Even the P's, who know me and visited the S's multiple times while I was living there, completely left me out of the list of grieving family members in their tribute, opting instead to include the girls' boyfriend and fiance. Um, hello? I've been a part of the family for just as long or longer than both of those guys! Aaaaaaanyway... nope, no bitterness here! lol So in addition to being ignored or marginalized, there is no one down here that even knows D. BJ met him once, in passing, as did my grandparents, but that's it. J knows them better, but she's all the way across the country (well, halfway right now, anyway), so I've pretty much been left to mourn alone. C has been fantastic about comforting me and listening to my stories of D and the S's, but again... he doesn't know D. It's not the same. He talked to him for a few moments on Skype once.

The man who performed the service, though, made it a point to include me. It may not have seemed like much to him, but it is something that will stand out in my mind and which I will always be grateful for. When we introduced ourselves, he said, "Oh, I know who you are. I saw you in the S's pictures." Then he asked if I'd like to give a tribute during the family time, which of course I jumped at. I just really appreciated the inclusion. In addition to that, I had let C know how important it was to me to sit with her and the girls during the service itself, and that was accommodated, which I appreciated an unspeakable amount. K and I cried together during much of the setting up hour, and I cried on J's shoulder several times throughout the service.

As much as I hurt for me and the girls, though, it was C's loss and pain that struck me the most forcefully by the end of the service. Now that I have C, I can't fathom losing him. The pain would be almost unbearable. Yet here is a woman who shared 30 years with the love of her life, and now he's gone and she's alone. The loneliness... would be unspeakable.

It got me thinking about life, and love... and whether it's all really worth it, you know? Because really, when you love someone, you are opening yourself up to the inevitability of loss. People die, and unless you and your spouse both die at the same moment then one of you will have to face the incredible pain that comes with that loss. Is it worth it? I was thinking about that, and wondering... but then I think about C and D, and how much I learned by watching their love lived out in their lives and in their family life, and I realize that it's greater than just two people in love. It touches and affects the people and community around those two in love. It is because of C and D that I really felt okay in moving forward with marriage, having the assurance that yes, a healthy marriage and family is actually a possibility and not a wild goose chase. And even when one of those two is gone, or even both of them, their love has left a legacy and a mark on the world around them that is worth the inevitability of pain and loss.

I also thought of C, my C, and when I thought about him I concluded that whatever time I have to know and love him is worth the pain and loneliness that will come when he's gone. Maybe it makes it even a little sweeter, knowing that there is a shadow in our future that nothing can prevent. What I took from my conversations with C about her loss and loneliness, though, is that it was also worth it for her to have known and loved D, even though he's gone now.

Love is a special thing. I'm glad that I have so much of it in my life. I am truly grateful for the abundance in my life, as I tell myself frequently... and I find it fitting that even after passing away, D is still influencing people in a positive manner. His life was such that it cannot be silenced, even in death. I only hope that I can live that well. It would be an apt tribute to a gentle giant of a man.
I can't talk about this weekend, not yet.

I don't feel like I have the mental or emotional energy.

One thing's for certain... I'm getting a lot of practice being kind to and understanding of myself. Health probs and medical procedures (as usual), grieving, plus my parents' divorce... there's a lot that's wearing me down.

But that's okay. Just because I'm worn down doesn't mean I'm out of the running. I'm just walking instead of jogging, taking time to appreciate the scenery.
Ok, this time mostly music. (Again.) Wait, no... some words, too.

If C sang, I imagine this'd be the song his life sings to me on a regular basis.




His dad stopped by earlier, while I was moping around on the bed. C came into the bedroom and summoned me outside. When I walked out and saw the Sheriff's truck that C's dad drives, I yelled, "Surprise! You're getting arrested!"

The surprise? C's dad came over and arranged with C to get me a rental car for my drive tomorrow so I don't break down on the side of the road with my sketchy car (a thought that was weighing heavily on my mind). I'm responsible for gas, but C's dad is putting up the down payment that he'll get back, and I think C is covering the actual cost which isn't that bad at all. I guess D bugged C's dad about me needing a vehicle after I asked to borrow her truck for the trip (she was already planning on going out of town herself), and so he came up with this plan. I married into a really good family. When I asked C, "Why are people so nice to me?" he chuckled and said, "What, do you think we're a bunch of jerks? We only act like it. We're nice to people in our circle." LOL

Truly, though, it surprised me. I didn't really consider C's dad as a caring individual, but I'm starting to reconsider that. I think he's a lot like C-- hard on the outside, especially if you don't know him, but tender on the inside to those inside his protective circle. C is a big, tender soft teddy bear around me, but some of my friends won't believe it. They don't buy that he actually has feelings. It's pretty funny. But I try not to blow his cover too much... he spent years with the reputation of "robot", and I'd hate to spoil what he's worked so hard for. Hehe.

On a side note, S took me out to a sushi lunch today, and while we were at the restaurant he had a phone conversation with his mom. Explaining what he was doing, he told her, "I'm out to lunch with C... you know, C's wife. Ex-roommate?" It was a huge jolt to me to hear myself described as "wife". I'm still not used to it. I felt really grown up for a second, and then it passed. And then I stuffed another eel roll into my mouth.

Back to packing... as I've been doing for the last hour.


No words. Just music.

K. I lied about the words. I'm full of them.

I hurt physically. I'm swirling inside with the maelstrom of things that must be accomplished, things that are happening, and so many feelings... It's as though there's so much that a grey fog has descended upon it all, obscuring it with a thick cloud of apathy.

The to do list fights to make it through the thick brick wall of uncaring, unfeeling nothingness...

I am laying (lying?) on my bed, listening to the full We Are Not Alone album. It's comforting, somehow, these songs that I know so well... songs that lulled me through so many days and nights of depression as a teenager... songs that lull me through this funk even now. Dare I call it depression? Maybe. Maybe I'm just overwhelmed.

Whatever it is... I don't feel good. I'm hurting and want to take a pain killer, but I'm afraid that I don't hurt enough to justify taking one, and that it's just 'cause I feel out of sorts and want to feel better. I don't want to be a junkie. But I don't want to hurt, either. I fight this battle with myself every time I come due for a pain killer. It's dumb... but it's constant warfare in my mind over whether I hurt enough, whether I'm sick enough, or whether I could just tough it out for a while longer.

Of course I can tough it out. I proved that last week. That doesn't mean that I ought to, or that I have to.

But still... when is enough enough?
Well... how about that.

Just when I've got one thing to dread, another one rears its ugly head, eh?

Life's been full of emotional ups and downs in just the past few days. Had an "intervention" of sorts with a friend who is in crazy bad crisis mode, a fellow abuse survivor. Her ex has been trying to help her through it and fix her I think, but it's not been effective. From what any and all of us can tell, it's a scenario that is terrible for both of them. I could go into further detail and thoughts about that, but... I won't. The whole situation frustrates me and I'm just like... meh. I took her to group with me after a panicked, sobbing phone call the night before where I spent half an hour trying to help her cope with her flashbacks. I hung up hoping against hope that she wouldn't try suicide that night, because I'd already called the cops on her the week before for that reason but she ran away so they couldn't help her.

When I took her to group, it seemed as though she was just... not there. She didn't want to be there, she wasn't listening, and during the loooooong (too long, in my opinion! I wish that the facilitator talking to her had wrapped it up SO much sooner!) crisis intervention conversation afterward her most common words were, "I don't know". We offered her all of the options that we could, but she refused to take any of them. She asked for help, yet she does not want help. It is truly baffling to me.

If you are in the amount of pain that leads you to meaningfully say that you want to kill yourself and that you might try it, then why the hell wouldn't you grasp the lifelines being offered to you?! I've been through experiences similar to hers, I know a pain similar to hers, and I've been in a dark place much like the dark place she is in now... but the difference is that I chose change. I chose to accept help. I didn't turn away and burrow further into my pain (uh, well, at least not on the overall scale of things).

I just don't get it. And I don't have the capacity to try, honestly. I've got too much of my own stuff going on, and frankly, I'm not codependent any longer. I am not responsible for my friend's choices, as bad as I may perceive them to be and as much as I might like her take a certain path. I have done my best to help her. The decision is hers. She needs to act like the adult that she is and take responsibility for herself, her future, and her emotional health. I can't do that for her, and I don't even want to try.

So there's that. And then there's the memorial this weekend that I'm dreading/stressing over. It's not just that I don't want to face the mountain of pain and grief that I know is waiting for me, but it's also that I already feel like the odd one out. I'm family... but not really. So I'm included... but not quite. 'Cause he's my dad... except he's not. Talking with C on the phone this morning brought out hints of the awkward isolation that I may experience this weekend, but I'm hoping it's just unlikely negative projections brought on by stress. I really musn't go into this expecting the worst, because that'll be what I find.

Just found out --via Facebook, of all places-- that my parents really are divorcing. R's moving out temporarily until Mom can find a place to move to. Great. Thanks for keeping me in the familial loop, guys. Whatever. I don't have the emotional capacity to grieve that right now. I'm a little preoccupied grieving the parent that, you know, stuck around.

Sorry. I'm a little angry. I'm just so effing done with the roller coaster ride of my parent's dysfunctional relationship and what it does to our family. I guess I should be happy. And no matter if they're divorced or not, R is still my dad... so... I dunno. Too much emotional complication there.

My body hurts. Still. Again. Whatever. I'm so beyond able to care about anything anymore tonight.

Good night.

Just music








I love how this one reminds me of some of my favorite Def Leppard songs.

I read an amazing blog post just after posting up my last little ramble. Though it's written in the context of being a parent, letting go of the damaging pursuit of perfection, and embracing life as is, it really spoke to me as a warrior. (Warrior? Yes, a chronic illness warrior, of course!! I'm badass enough to call myself warrior, and I've got the weaponry and the snake to prove it ^_^)

I think it's a concept that is applicable in so many contexts, away and beyond parenting. How many of us get down on ourselves so hard for not being perfect, for not being "good enough"? Way too many of us, and way too often. It's a very human trait, especially when we're raised in a world so adept at Photoshopping.

So don't heed my rambling review any longer-- go check it out for yourself! Who knows... it may spark a revolution in your thinking.

Good Enough For Today, by Hands Free Mama.

(Btw-- Oooooh! The painkillers! I can feel them working!)
So I'm basically tired of writing about my pain and sickness... but that's probably because a.) I'm tired of dealing with it myself, and b.) I'm afraid that anyone who reads this is tired of it as well. Like, geez, doesn't this girl do anything but moan and groan about how sick she is?

Not really, no. Heh.

In any event, I saw my rheumy yesterday-- finally! I made it through some days that I thought were impossible to make it through, which just goes to show that you can "handle" just about anything, no matter how painful it is. The inevitable passing of time sees to that, so long as you don't take matters into your own hands and end your suffering. I thought about it more than once, I will not lie. When you're hurting so badly... it's not that you necessarily want to die, it's just that you don't want to live that way any longer, and you're not sure if you can stand another minute without the prospect of relief.

Why do I love my rheumatologist? Because I feel like she takes me seriously. Maybe she's not the best out there. I don't know. I've never been to another. I figure why fix what isn't broken? I've taken to bringing a list with me of positive progress, negatives that have cropped up, and questions/issues I'd like to address with her. She listens patiently, explains where necessary, and always answers my questions. I wish there were one quick fix to what I'm going through, but we're still in experimentation mode, which means trying different levels of this med, trying that med, adding this one and eliminating that one... so, as of yesterday, I've got the go-ahead to wean myself off of Savella, the crazy expensive fibromyalgia med that doesn't really seem to be helping. I also wanted to get off the gabapentin (Neurontin), because I don't see any effect there at all, but she felt that upping the dose would be a beneficial experiment because not only would quitting it mean that she is then no longer really treating my fibro at all but also because I'm still on a fairly low dose and a higher dose may be what I need. I expressed my struggles with depression, and she is having me give Zoloft a try (I can't remember off the top of my head what the generic is called... something with an "S".)

In addition to fiddling with the meds, she swapped out my Tramadol for Tylenol (acetaminophen) with codeine. She says that maybe my body just needs a break from the Tramadol, so we can try it again later and see. So far, I'm so not impressed with the Tylenol 3's. They take forever to kick in, and while they last for a while it doesn't really take care of the pain in a significant manner. It will take it from intolerable to pretty tolerable or a little below, but it doesn't really take it down to a level that I feel is compatible with functional living. Maybe that's because my body is pretty intolerant to NSAIDs? Maybe I just need to learn better pain management/coping skills? Bleh. I'm going to give it a week and if I'm still unhappy with how it's working then I'm going to call the office and request a switch. (One of the questions I asked in the appointment was what her policy is on contacting the office with questions or concerns between appointments, and she pointed out that she didn't want me sitting at home in tears because of pain and I'm trying to tough it out until my next appointment... which means that I should have called. Hehe... oops.)

This new pain med is easier to get addicted to than the Tramadol, from what I understand, so it's to be taken in a reactionary way, not a preventative way. That means that I actually have to get to the point where I'm thinking, "I really can't take this pain anymore," before I take one. The problem I'm having is that I struggle with knowing when I ought to not take the pain anymore. My sense of pain levels is all skewed. I think I've mentioned that before. I suppose it varies from day to day, too. On days when I'm very fatigued, I'm more susceptible to pain than days when I'm energized and rested

She sees overall progress, though. She pointed out that it seems that I'm doing better with how I deal with my fibromyalgia, and she's right. Though I still struggle with depression more frequently than I'd like, overall I'm dealing better. I have a good support system, I'm getting more educated, and I'm learning to adapt to my new life. Also, one of the positives that I brought up was that I'm hardly stiff in the mornings at all anymore, if at all. Apparently, that's a sign that the Plaquenil is working, which means that I'm responding to treatment for the UCTD. Although she's reluctant to give me an official diagnosis of UCTD, the symptoms I'm exhibiting and the fact that I'm responding to treatment for it make her lean more strongly in that direction than she was even last time. The problem is that many of my symptoms could also be due to the fibro, as well. When it comes to stuff like this, the overlap is unbelievable, and it's difficult to work out what exactly is going on. I haven't even been dealing with this a year yet, so in relative terms I'm way ahead of the game. (Isn't that sad?) Many, many people spend years trying to get the initial diagnosis of fibromyalgia, and I got that dx on my very first rheum visit. I am fortunate, very fortunate. (There's always something to be grateful for, eh?)

The next few days will be spent adjusting to the new meds, crossing my fingers for minimal side effects, and preparing for my trip to Cali. I leave in just three days; four, if you count today. Fortunately, I spent the last two weekends dog/housesitting, so that will be my gas money.

Did I mention that C's truck broke down last weekend? I find it amusing, because my car is supposed to be the one on its last legs! His fuel pump just quit, out of the blue. We got it fixed, but the price ate up what we had tentatively set aside as our gas money for the trip to Id. It's not for sure that we can't go, as C has been working quite a bit of overtime lately, and will probably continue to do so, but it's not for sure that we can go, either. What a pickle to be in... We won't know for-sure-for-sure until closer to the date, but I hate to have J under the impression that I'm coming if I might have to back out later on... Yet on the same token, I don't want to have her wildly swinging on a roller coaster of "Are they coming or aren't they?" But we have to go, not just for J's wedding. I need to get my cat, and the rest of my things! Plus I want to show C off to all of my friends. That's a good reason, right?

Well... I'm going to attempt this sleep thing again. Maybe I'll shower first. That tends to wear me out. I took a Ty3 a while ago, so that should be kicking in... in an hour or so. Hmph. Again, so not impressed. Here's hoping those painkillers get their act together!
On C's advice, I took a super-dose of Tramadol last night. I could definitely feel it affecting me, but more importantly I could feel the pain draining away to super low levels. Then again, maybe not? The hard thing about being in such high amounts of pain is that it totally screws with your perception of pain in general. I can no longer really place my pain levels on a scale, though I do for the sake of understanding for those who aren't in my body, meaning everyone else. In any event, the pain levels are low to medium-low today compared to what I was going through recently, and that's enough to make me want to do the Macarena or something.

Although my balance and vision were screwy, and my stomach hurt until I drank some soothing tea, my pain was blessedly masked, and I fell asleep quickly. The pain is back today, but not at such high levels. It's getting worse as the day progresses, but I'll just super-dose myself again tonight if need be. I know that my poor body is very tired from the battle its been fighting just recently, so even though I feel "better" today and the temptation is to leap into action and get stuff done, I'm making a conscious choice to be kind to myself and to my body and just rest today. Get a few things done, sure, like laundry and arranging the flowers that D and R brought with them to C's barbecue... oh! C and I are taking a walk together when he gets home! I'm looking forward to that :) And I intend to shower today, as it's been a couple of days more than it should be since I last did more than just soak in a tub of hot water. That should pretty much do it for me. Most of the day, I'll be resting, because I want to be good to myself. I deserve it! Especially after the hell I just suffered through. There are only a few people in the world I would wish this kind of existence on, and they're people that have wronged me greatly.

J brought up an interesting point today in passing... Those around me, friends and such, feeling bad/sad because they're helpless to help me or alleviate my pain. It's got me thinking, really. I don't want to sugarcoat my life, especially here, because I need an outlet of some sort. In person, I do a pretty good job of smiling through the pain, but the internet is where I can bare my soul and find support and humor from fellow survivors. But should I really be so honest? Should I be more Stepford Wives and pretend that everything is fine?

Nah.

Here's what I think: Even though my pain may make those I love and who love me uncomfortable because there's not a damn thing either of us can do about it, I'd much rather they know because it is now a part of who I am and how I live my life. To hide a part of myself for the sake of reducing possible uncomfortable experiences would kind of negate the point of the friendship. I fake it with those I don't care to let very far into my life. Those that I let in, it's because I know that even if it hurts them to see me hurt, they will still treat me like a normal person. As much as I sometimes desire to be coddled and swaddled and waited upon hand and foot (though I think that's normal--hello, Mother's Day!), I so much more appreciate the real acknowledgment of my limits, expressions of compassion, and continual good humor that they put forth. So J, how to relate? Just keep being my friend. I'm sorry my pain makes you sad. It makes me sad, too. But just keep being my friend like you always have, and don't get upset when I'm too worn out to want to deal with people at the moment... even awesome people like you.

On another note of pain... D's memorial is this weekend. The closer it gets, the more I kinda don't want to go... because if I don't go, it's not real and it didn't happen, right? And if I don't deal with the pain, then it's not there, right? Right?

Ugh. I'm going to cry so very, very much. I'm dreading it, honestly. I don't want to face this grief. I want to pretend that D is still alive off in the far-flung land of Id, and I just haven't heard from him in a while (which is not uncommon at all), and this has all just been a big misunderstanding. That's what I want. I want D to still be alive. I don't want to attend a memorial service in a church that will be stuffed to the gills with people that I don't know who also loved him, or at least liked him, and I don't want to see his family or Gaga because the last time I saw them we were celebrating another year of life for D.

But on the other hand... I do want to see C and the girls. I know they understand this special brand of grief that comes from having shared a home with D. And finally, I will have someone to grieve with who knew D. I won't be alone in my pain, at least for a few days. There is that.
There are a couple of things I want to mention today, the first of which is that, while I haven't talked to R in over a week (I think?), I did talk to Mom the other day and she assures me that what I thought was happening/going to happen with R is not the case. It's just another example of how our pasts get in our way sometimes-- I was reacting emotionally to a perceived threat of "abandonment" that wasn't really there... and he was reacting emotionally to a very shocking piece of news, so there's no way that I could  judge his intentions by one short, emotionally charged conversation. Having a conversation with E the day before my convo with Mom also helped put a few things in perspective regarding this situation, and so I totally want to take back whatever negativity I put out there regarding Father's Day and my apparent dearth of fathers. It's not true. R is still my dad, and it was wrong of me to question that without getting his side of the story.

I needed to get that off of my chest. I feel better now.

Fighting depression again today, but I know why. I'm worn down from being at such high pain levels for so many days in a row. As I was (dismally) thinking about it earlier, I realized that it's kind of like torture. You know, like POW stuff? I'm talking old-school, ignoring the Geneva convention style of inflicting massive amounts of pain to get the information you want. Theon Greyjoy? The Dark Ages? Spanish Inquisition? (Expected by no one...) That kind of torture. Not the more humane, "we're going to  simulate drowning and use your survival instinct to our advantage" that people get so worked up about in our modern world.

It's torture, day in and day out, and I'm caving... except there's no one to confess to, no information to trade that will somehow stop the suffering. I'm being tortured by chance, by a fluke of my genes and the dysfunction of my own body. How do you stop that with a few well-place words? There is no stopping it, it seems, and I'm quailing under the immense load of unrelenting, high-voltage pain.

This is normal. This is to be expected. I've done damn well, I'd say, in maintaining positivity and a good attitude throughout this ordeal, so I can forgive myself for wearing out.

Also, it's Father's Day. D's first memorial service was today, and I thought of him several times today, along with the family. I wonder how they're holding up. I wish I could be there with them. Selfishly, I wish that I were back home with the S's, because I know that they would help take care of me when I'm like this. I think I just miss real food. I don't have the energy, stamina, or appetite to make myself real food lately. Poor asparagus has just been sitting in the fridge forlornly, sharing a crisper drawer with some other veggies that never made it down my gullet. I think there's even some 2 week old squashes in there.

Missing D. Frustrated not only about this pain that I can do nothing but endure, but also about the loss of activities that I used to enjoy... even something so simple as cooking good food. I loved cooking for the S's, and I remember D enjoying the sometimes exotic cuisine that I'd put on the table. Now D is gone, my appetite is gone, my past times are gone... and I am sad.

A friend of mine spent the night in the hospital. I laid into him when he showed up sick for C's barbecue the other day, because it really pisses me off when sick people try to "soldier through" and end up spreading their illness to people who are very easily susceptible to illnesses, like me. It's one of my biggest pet peeves. If you're sick, stay home. Everyone in our circle knows that to come over when they're actively sick is a death sentence, because I will get very upset... and they're kind of afraid of Corey, my watchdog. This is all in a partially joking sense, of course, and we all laugh about it, but I think there's some truth behind it. But most of the guys respect me enough to stay home when they're sick.

Anyway, this friend has some stomach thing going on that he mentioned, and I guess some tonsil-infection thing which took a turn for the worse, so he ended up in the hospital overnight. I didn't know what was wrong with him at the time he posted a status update about being discharged, but I kinda felt like a bad person for my internal response to his plight. He said, "well i wont be needing surgery after all. They are discharging me in a bit. ill have to take like 5 different kinds of pills and see a doctor next week to so how i am doing. I dont know what i will be able to eat though cause i can only eat certain food. that blows cause i want some pancakes right now." My mental response?


5 kinds of pills? Not able to eat what you want, only certain kinds of foods? Have to check in with your doctor about your serious symptoms? Bitch, please. That's my life, and I haven't ever been hospitalized for this crap. (Uh, not to put down those that have had to be hospitalized for their chronic illnesses, it's just that I haven't had to deal with that yet, hopefully ever. Your experience is totally legit, I assure you.)

Anyway, I felt bad for not really feeling bad... especially when I found out that it was his tonsils. His tonsils. Not to say that one disease or illness is more serious than another, but... tonsils? Really? And I've been lying here in agony for how many days now? As you can see, I have serious entitlement issues going on with my pain and sickness.

I mentioned to a different friend how I feel like a bad person because "I'm just like, 'Psh, suck it up. That's my effing LIFE. You'll be fine. At least yours goes away.' And then I feel bad for not feeling bad... although I DO hope that he recovers quickly. Because I feel a little bad, I guess... but not bad enough to be sympathetic."

He asked, "Did you tell him that stuff?"

I replied with horrified affront. "Of course not! I just told him I hope he gets better soon."

His reassurance was, well, reassuring. "Then you're better than most. I would've told him to get over his molehill and take a look at my mountain."

"Nah. I feel like that would be real selfish of me. To him, that is his mountain, you know? Just cause my life sucks more... well, we're not in a negative dick measuring contest. So, okay, with your feedback, I feel like way less of a bad person. Thanks."

That's why I don't feel like a bad person anymore.

I do still feel like the gum scraped off of the bottom of someone's shoe, though, so I'm out. Peace, yo.

Hah. I thought this was funny. (I'm surfing shirts on CafePress.)

Maybe it's not, but I've only had 3 hours of sleep, so give me a break, k?
This is one of my "fighter" songs that I've come across. I love it. Can't play it enough right now.




You can be amazing
You can turn a phrase into a weapon or a drug
You can be the outcast
Or be the backlash of somebody’s lack of love
Or you can start speaking up

Nothing’s gonna hurt you the way that words do
And they settle ‘neath your skin
Kept on the inside and no sunlight
Sometimes a shadow wins
But I wonder what would happen if you


Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave


With what you want to say
And let the words fall out
Honestly I wanna see you be brave


I just wanna see you
I just wanna see you
I just wanna see you
I wanna see you be brave


I just wanna see you
I just wanna see you
I just wanna see you
I wanna see you be brave


Everybody’s been there, everybody’s been stared down
By the enemy
Fallen for the fear and done some disappearing
Bow down to the mighty
Don’t run, stop holding your tongue

Maybe there’s a way out of the cage where you live
Maybe one of these days you can let the light in
Show me how big your brave is

Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave

With what you want to say
And let the words fall out
Honestly I wanna see you be brave

Innocence, your history of silence
Won’t do you any good
Did you think it would?
Let your words be anything but empty
Why don’t you tell them the truth?

Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave


With what you want to say
And let the words fall out
Honestly I wanna see you be brave


I just wanna see you
I just wanna see you
I just wanna see you
I wanna see you be brave

I just wanna see you
I just wanna see you
I just wanna see you
I wanna see you be brave
Famous last words, all that stuff about days not being good or bad...

The past few days have been absolutely agonizing pain, and me without any effective pain killers. Sure, I've got my Tramadol, but its effectiveness is now on par with that of NSAIDS... which is to say "little to none". I took some yesterday, just to see if it would help, and I got a headache. Go figure.

Anyway, just trying to survive until Tuesday, and my appointment with my rheumatologist. Hopefully she can hook it up with some real painkillers so I can get back to being a human again. I'm tired of being reduced to tears by pain that I can do nothing about.

But still... I'm alive, so I'm grateful for that. I guess it means that there's a chance for better days ahead.

C and I are going to go see a movie. I hope I can make it through.
So I was thinking this morning as I drifted off into blissful nap time next to the hubby... I've decided that I'm done.

I'm done with qualifying everything under the sun.

As I'm going through a day or an experience, I find myself constantly, obsessively ranking, sorting, and qualifying. "This is a good day." "This is a bad day." "This day is better than yesterday." "This experience is worse than last time." "My pain is at ____ level. Compared to earlier, I'm doing better/worse."

It's like I have this insatiable need to be able to line up my moments and days and experiences in neat, orderly categories of good, better, and best. I have to know exactly where I stand... but that has caused me so much grief. Instead of truly appreciating and valuing the moments of my living, I've been busy calculating their worth and my appropriate response.

So you know what? I'm done. I'm done qualifying my days, my pain, my self as "good" or "bad".

It's something we all do.

"How is your day? How are you?"

"Good. Fine. Bad. Boring."

How about, instead of worrying about having good days vs. bad days, I simply be grateful to have a Day?

I want to just let what is... be. Just let it be. Accept where things are at, where I'm at, and be okay. No more labels. No more fitfully dragging myself through hoops to transform a "bad" day into a "good" day. What happens happens, and the rest gets left for later. And that's just what is.

Whether I am in pain or dancing ballet in the living room; whether I feel dreadfully ill or have not a hint of a tummy ache; whether I am battling depression or walking on sunshine... today is a Day, and I am grateful for it.
I saw this posted by a chronic illness group I follow on Facebook, and I had to tuck it away for future personal reference. It really speaks to me at this moment in my life, as I'm struggling to make sense of my life and the possibility of chronic pain being a permanent, prominent fixture in it... and struggling with the knowledge that the chronic illnesses will be a permanent fixture. It also reminds me of my days in Celebrate Recovery, and the healing that came from working through those 12 steps with trusted fellow strugglers... so it's a good medium to speak to me and help me work through some of the issues I've got going on. (SO many of these steps smack me upside the head!)

So without further ado, I present the 12 Steps for Living With a Chronic Pain, by Susan L Gardner

1. I am powerless over chronic pain and it makes my life unmanageable. I do what I can and the rest will have to wait until I get to it.

2. I refuse to feel guilty about having a health condition that limits but does not stop my life. Chronic pain guilt will eat you up. Let it go…. Make the best of what you have and live.

3. I will do a fearless inventory on my losses and my emotions. I will explore my past, relationships with my family, friends, co-workers, and employers in an effort to gain perspective of how chronic pain has affected my past, and in order to be at peace with my present and gain hope for the future.

4. I am willing to make amends where necessary. I’m sure along the way I have made others angry, and for that I am sorry. However, I refuse to take on any un-necessary responsibility or guilt that does not belong to me.

5. I refuse to accept mislabeling in my life. I will no longer accept terms like lazy, crazy, mental, addicted, malingering, seeking secondary gain, hypochondriac or any other of the countless, thoughtless titles included in the stigma of chronic pain to be allowed in my life. I am a human being as well.

6. I will remember to pace myself. Take things one step at a time in my recovery process. I am not out of the race, I just have to run a little slower.

7. I am willing to take responsibility for my illness by use of research and advocacy in order to make the best decision for ME. After all, I am the one living this life.

8. I refuse to accept that I can no longer be a viable person and believe that my God has, in his infinite wisdom, a purpose designed, just for me.

9. I will seek out a healthy balance of life. These includes medical, spiritual, emotional, social, psychological and physical health. In addition, I will seek out joy, peace, love and laughter.

10. I know that chronic pain affects every aspect of my life, but it does not have to control my life. I must learn to look at life in a different light by finding new ways to do old things.

11. I will remember that living with chronic pain affects my family, as well as myself. And, in order to stay a healthy family, we must learn to communicate.

12. Most importantly, I want to share my journey, showing care, warmth, respect, encouragement and understanding to my chronic comrades in life.
So how was the trip to the beach? It was great! I'm quite glad that I went.

The trip up was uneventful, without even a stop by the Border Patrol checkpoints. I guess three white people in a beat up truck don't arouse much suspicion. In any event, we made our reserved motel in good time, having to give them 1/2 an hour to get it ready before we could actually occupy it.

I was the one put in charge of finding the motel because I had that terrible experience with the aptly nicknamed "Roach Hotel" during the trip C and I took to the Ren Fair just before the wedding. Their reasoning was that, having had such a bad experience, I would be more likely to do research and make sure that I wouldn't have that kind of an experience again. Well, they were right! We stayed at a Quality Inn just off of one of the major interstates, and even the outside looked presentable. When we got up to the room, we were astounded at the level of luxury that less than a hundred dollars had gotten us. The beds were so comfortable, and so were the pillows! We ended up lazing around on the beds for a couple of hours after bringing up our things, but we finally roused ourselves enough to put on bathing suits and gather our beach supplies.

Although we started late, and many shops were closed (it took FOREVER to find parking!), we walked up and down one of the streets by the beach that is brimming with quaint little shops and tourist traps. M had allotted each of us a "budget" for souvenirs, and he proceeded to spend money on all of us, himself included. As I said, I'm shallow and I love free stuff, soooo... I was all over that. (Lest you think I'm a gold-digger, I assure you that the good ol' guilt factor was still well in place, and I was hesitant to accept his gifts, but it was clear that he wanted to, so... I let him.) One thing that was purchased for me was a dress that I tried on in a whim in one of the cute clothing stores. We were ooh-ing and ahh-ing over some fancy party dresses, and there was a particularly stunning lacy number with a keyhole back that I just had to try on, just to see what it looked like. As I was pulling it from the rack, M wandered over with a strappy black maxi dress and I took that in with me, too. I tried on the black one first and walked out to stares and intakes of breath. Though it was expensive, I thought about it that night and went back for it the next day, changing into it then and there and wearing it the entire rest of the day and the trip home. It's very comfortable! Though it is a maxi dress with lots of material, the top is quite strappy and a bit daring, showing some cleavage and having no back to speak of. Needless to say, C likes it. On our way home from dropping M off, he asked me, "So... is this going to be your new 'sexy black dress'?" I just laughed. (Wearing something "sexy" like that in public is a big step for me... I'm not used to owning my attractiveness like that. It used to terrify me, and it's still scary, but it's something that I want to do for myself. This was a good step in that direction.)

After shopping for several hours and stopping to eat, we wandered down to the beach. I separated from the others after a few minutes, because I knew that I was there to grieve D. That was the big reason that I went on the trip to the beach, and I'm glad that I did, because it was cathartic and peaceful at the same time. I had my time, I reflected, I cried, and I accepted just a little bit more. Then I went back up to my towel and did some deep breathing while watching the waves. I can still see the dusky sky and the rolling, crashing water when I close my eyes. I hope I carry those moments with me for a long time.

We had thought about dressing up fancy and going out to some sushi place or something, but by the time we piled into the truck for the ride back to the motel I was too exhausted. I didn't want to be a damper on anyone else's plans, but it turned out that the others were tired too, and content to just hang out in the room, which we did. I fell asleep really quickly, which was a blessing. I was worried that I'd have more of those sleep problems I've been having lately. I did wake up at 5, wide awake, but managed to fall asleep again around six until M's alarm went off at 8:30.

After breakfast and getting our things all together, we checked out and hit up the shops again to visit an antique store we saw the day before that had been closed. We really wanted to go in, and I think we were all glad that we did, as all of us walked away with some treasure. The prices were really good! I bought a silver and opal necklace that reminds me of the ocean. I wasn't going to get anything, but we ended up going back because M forgot his hat in the store, and when we walked back in I knew that it was my last chance and I took it.

We walked the pier and had lunch in a little restaurant at the end, above the water. It was neat to look out the wind and see the waves rolling by beneath you. I hadn't realized we would be in the sun that much, and I didn't even think about it being midday sun, so I didn't wear sunscreen the second day and got a little crisped on the shoulders. After eating lunch, we walked back to the truck and headed home, making record time. Unfortunately, M's truck broke (brakes failed) just as she pulled off of a major street toward my house, but it was close enough that she was able to use the emergency brake to get us to my house. The two M's ended up hanging out for a few more hours than they thought they would, but it was all good. Even when I'm tired and have a headache and am annoyed with the world, those two fall into the least annoying category, much as C does.

Again, I'm glad I went, and I'm looking forward to the next beach trip. Fibro didn't even play much of a part on the trip, as I was afraid it would. I almost felt like a normal person walking the beach! You know, except for the walker and frequent need to eat/take meds...
Father's day is coming up soon.

It's got me thinking a little... about fathers, and my apparent lack of.

The subject is one that rouses a deep sadness within me. I feel cheated, abandoned, used, greatly disappointed, and slightly confused, all at the same time. The confusion is due to not really knowing what a real dad is or is all about, so I'm not exactly sure what I'm missing out on, but I'm pretty positive it's something great.

I know I'm not alone in being dad-less. It's an epidemic. It's also something that my children will never experience. Both C and I are determined that our children will never suffer the fates that we did, either of us. Our children will know that they are loved by both of us, and that they have the stability of a home life and the security of care, no matter what our economic situation.

Just the thought of that makes me want to cry, because although I desperately want to give that to my hypothetical children, I ache and grieve inside that I never had that, and I want it so badly. Inside, I'm still a sad, uncertain little girl who longs for affection, acceptance, and security.

So Father's Day. It brings out the little girl in me, and the sadness in me... because although I have two fathers to send cards to... I don't think I have a dad to celebrate. Not anymore.

It all comes down to semantics. A father is someone who breeds a child. "He fathered a child." A daddy is the loving, caring role model of a child. A dad is the strong, caring, dependable caretaker, the one who is involved in his child's life and gives advice and teaches things and lets his love be known in whatever form that takes for him.

I have a father, but T is more of a friend than a dad, at least at this point. R is the person I claim as my dad, but he's ready to walk away from all of us at this point, and I feel viscerally betrayed and cheated. D was a dad, but now he's dead.

Father's day sucks.

Maybe, in protest, I won't buy a single card this year. That'll show 'em.

Yeah.

:-\
You know how fibro makes it so you can't do the things you used to, or the things that you want to?

I say eff that! I'm going to a beach city with friends for the night. It's not like it's spur of the moment (we've been planning it for a couple of weeks), but it's still going to be awesome.

I was torn between two options for this weekend--seeing my bestie J for a day, or going to the beach for the weekend. The tipping point was when my friend M revealed that he has been saving up and basically wants to spend money on the two of us that are also going. Yeah... I'm shallow. I like free stuff.

Plus my latest bouts with grief have me longing for the ocean. I need it for my sanity, and I know that J understands.

And with that... I'm off!

*So excited!*
It's an interesting phenomenon, chronic illness... and the chronic pain that comes with it.

It's like everything in your life is rearranged and slightly skewed from normal... like living in your very own Twilight Zone. Everything seems familiar, but there's just something "off" that sends a little shiver of fear down your spine, and you can't quite put your finger on it...

I'm finding that chronic illness has tweaked a lot of my definitions, and it weirds me out.

For instance, my definition of "sick"...

Yesterday, I ended up in excruciating pain come evening. The kind of pain that has you gasping yet trying not to breathe and contemplating whether you can physically make the trip to the hospital. And crying. Definitely crying. No exaggeration. (Oh, how I miss living right across from the hospital in some regards!)

Also, before all of that "I'm in horrific pain", there was the unrelenting exhaustion that made it difficult to put one foot in front of the other, yet your body is feeling juuuuust crappy and painful enough to keep you from sleep. Don't forget that the longer you're awake and moving, though, the more pain you'll be in, as a general rule. (A strong painkiller obtained from undisclosed origins did the trick for that one.)

So today I wasn't as exhausted or in as much pain as yesterday, therefore by comparison I'm okay today. I'm not "sick", and I have no legitimate excuse to lie around and rest, because I'm doing better, and rest from what?? It's not like I did anything. But I am still occupying that grey wasteland between "I feel terrible please kill me and put me out of my misery" and "I feel well enough to be up and about".

However, I got super sick during acupuncture and went home early. Halfway through the session I got very nauseous, dizzy, and began having abdominal cramps and chest and back pains. I made if off of the table and out to the lobby, but I couldn't drive myself home so I called C. While he was on his way, I almost had a panic attack because of how terrible I was feeling. C picked me up, took me home, and cooked me broccoli. I took a nap. My pain levels have increased to just shy of "I can't handle this", because I've been laying down. If I get up and move around, they'll shoot up to unmanageable levels. I found that out when I went to the bathroom.

It's interesting how my definition of "sick" and "pain" have changed... and seem to shift on a daily basis. Some days, pain is a thing that I can put on my game face and deal with. I'm a warrior! Ooh-rah! (Pounding of chest) I'm such a badass and an inspiration! Other days, pain is just not something I can handle, nails on a chalkboard, and I shamefully gulp down the pain killers to hide my weakness. I don't feel that I have a right to consider myself sick, since this is my new normal. I'm only sick if it's beyond what I deal with on a regular basis. If I feel terrible, but it's a normal terrible, well then... I should (aha! there's the rub!) be able to just suck it up and deal, right?

Yet I can't help but think that if my condition were to be transferred to someone else, it would reduce them to a whimpering puddle of sadness and narcotics. And then I don't feel so bad about myself.

I guess I just want to know that I'm doing okay, that I'm not a bad person or a druggie for taking painkillers to get any relief from the unrelenting pain (because it's literally there 24/7), and that I'm actually sick. Yes, to my shame, I would like validation that I'm as sick as I secretly think that I am. I like to pretend that I'm okay and can handle life, because that's what people like to see and hear-- that's what they need to see and hear, because the reality of illness and pain that doesn't go away is very, very uncomfortable for most people to acknowledge. There has to be a cure! And if I've resigned myself to simply surviving in this ravaged carapace (for example, by taking pain killers to cope), then I've given up and I'm a bad patient. I've failed at being sick. (Can you even do that???) I'm no inspiration; there will be no movies made about my life. The American dream of being a legend, an urban hero, will not be realized in my life... because I've given up. I've turned my attention from banishment of symptoms to management of sanity.

In a culture accustomed to relegating disease and pain to the "acute" category and expecting quick recoveries,  long term pain is a confusing place to live. If you can't fix it, then... well... obviously you're not trying hard enough!

And those are just a few of the messages that I'm bombarded with so frequently, internally and externally.

The Twilight Zone, I tell you. It almost makes sense, but not quite.

No, actually, it doesn't. It doesn't at all.
Even though I have a hard time sleeping these days, I still enjoy lying in bed with C. Often, he'll roll over and pull me into a sleepy spoon embrace, his tall frame tucked around mine and his arm wrapped around my waist, my head half on a pillow and half on his other upper arm. If he rolls the other way, I will curve myself around him, cheek pressed to the warm expanse of his bare back and arm slung over his side. No matter which way we're lying, our legs always find themselves weaving and tangling together, feet caressing calves and toes.

Last night we carried my "new" "pantry" into the kitchen. It's just a tall metal cabinet with shelves inside and two swinging doors, but it used to sit on the porch of the apartment, and in C's first apartment before that. (I don't know where he got it, as it wasn't there when I lived with him the first time...) After bringing in the pantry, C began cooking and I sat on the squishy rug to converse with him.

I told him that I knew we'd be okay financially, and there's some things I can do here and there to save a few bucks, but in the depths of my heart I am afraid that he will come to resent me for taking all of his money... the way R seems to resent mom. (Honestly, I'm afraid that R will/does resent me, as well. I hate being a money pit.)

My siblings have, at different times, texted me about relationships. The first time, J asked me, "Love won't always be like this, will it?" This most recent time, the other J texted me to say, "Please tell me you are happy with C." They're watching us, waiting with bated breath to see if there really is such a thing as a happy, healthy marriage. I get that. I so, so get that. I seize these opportunities with my siblings to teach them pieces of what I've learned about life and healthy relationships, all the while affirming that C and I are, indeed, happy and healthy and not splitting up. Our friends are watching us, too, looking to us as both example and inspiration. Often I wonder how this can be. We are so young. What kind of examples can we be? But in a world that is riddled with the shattered corpses of unions and commitments, I suppose that a living, breathing marriage in fine fettle is a rare thing, indeed.



Hey! Hey! Hey!
I don't like walking around this old and empty house
So hold my hand, I'll walk with you, my dear
The stairs creak as you sleep, it's keeping me awake
It's the house telling you to close your eyes

And some days I can't even trust myself
It's killing me to see you this way

'Cause though the truth may vary
This ship will carry our bodies safe to shore

Hey! Hey! Hey!

There's an old voice in my head that's holding me back
Well tell her that I miss our little talks
Soon it will be over and buried with our past
We used to play outside when we were young
And full of life and full of love.

Some days I don't know if I am wrong or right
Your mind is playing tricks on you, my dear

'Cause though the truth may vary
This ship will carry our bodies safe to shore

Hey!
Don't listen to a word I say
Hey!
The screams all sound the same
Hey!

Though the truth may vary
This ship will carry our bodies safe to shore

Hey!
Hey!

You're gone, gone, gone away
I watched you disappear
All that's left is the ghost of you.
Now we're torn, torn, torn apart,
There's nothing we can do
Just let me go we'll meet again soon
Now wait, wait, wait for me
Please hang around
I'll see you when I fall asleep

Hey!
Don't listen to a word I say
Hey!
The screams all sound the same
Hey!
Though the truth may vary
This ship will carry our bodies safe to shore

Don't listen to a word I say
Hey!
The screams all sound the same
Hey!

Though the truth may vary
This ship will carry our bodies safe to shore

Though the truth may vary
This ship will carry our bodies safe to shore

Though the truth may vary
This ship will carry our bodies safe to shore