You know what? Today was a good day, and I'm proud of myself.

I know, I know... what a shift from my sobfest of last night, right? Yes, well... here's the thing about emotions: they're subject to change. That's why you can't base your decisions solely on them. Sure, they have their place as informants, but man, they can be fickle little things!

I did good today, y'all. And I'm not just talking about productivity levels, but more about being aware of myself and what I have to give... counting my spoons, if you will. I'm very tired, but I didn't overdo it. I almost did a few times, but caught myself before I went too far.

Productivity-wise, what did I do today? I'm so glad you asked! I'll tell you :)

I was supposed to go into work today, but a family emergency of some sort canceled that, so I got to sleep in. I was grateful, because I woke up at 8:30 from pain. I took a pain killer and a hot shower (Yaaaaay! I showered today! lol) and was able to drift back off to sleep around 10:30. It was nice, because I got to cuddle with C all snuggly and warm.

When he got up at 1 to get ready for work, I decided to wake up as well. I stayed in bed for a few hours doing internet stuffs, then arose and got ready for the day. I made the bed, opened the doors for some fresh air, and proceeded to clean. I knew that I would have to be careful not to push myself too far, as cleaning is one of the things that I get carried away with super easy. I tidied up the bathroom and fixed the shower curtain that I'd been wanting to work on for a couple of weeks. Then I got my roomie to do his dishes, did my dishes, wiped down all the kitchen counters and swept the floor. It was at this point that I realized that I would need to stop soon, but I was able to vacuum the main living area before I had to go lie down. (I was literally telling myself, "Go lay down, you need to lay down... now. Right now. Go lay down.") (Also, lie vs. lay. I never can remember which is which. I should google that.)

After a short rest, I took S to his friends' house, dropped off my laundry, hit up Wal-Mart for a couple of groceries and the final part of K's gift, then I jetted over to the mall to catch a free, open-air jazz concert with my friend C. The concert was really cool, and I'm glad I went. It got chilly after the sun set so my joints started complaining, and I was getting really hungry, so I ended up leaving before it was done, but it was great nonetheless. I had planned on visiting another store while I was there at the mall, but I knew that to do that would definitely be pushing myself past my limits.

I went home, ate, and rested up before I went back for the next step of my laundry. Then I pretty much just hung out on the internet until C got home.

Also, today I talked to my mom! I'd been feeling as though she'd been distancing herself from me lately, and it hurt... especially because she's one of my best friends, and I'm going through a lot right now, and I really need her support and advice. And with the wedding looming? I'm nervous and scared and slightly overwhelmed, and I really need her right now. To put it simply, I still need a mommy! So I wrote her a message about this, and we talked about it. Sure enough, she's dealing with a lot, as I suspected, and is very overwhelmed herself right now. (She assures me that my needing her is not a burden, which I'm grateful for.) She was kind of backing off, not wanting to take up my spoons and wear me out, but I insisted that I'd gladly use a spoon or five or fifteen to talk to her. Long story short? We're good, and it was not a big deal, really. Just a small bump in the road that was easily corrected with some clear, honest communication :)

Did I mention that I treated myself today? That blog post I read yesterday (the one that kicked my butt, remember?) had some really good advice in it. One of those pieces of advice was to reward yourself for your accomplishments. Not only was today a good day, but I've been trying really hard lately to be good to myself and keep balanced, and I'm proud of myself for that, too. So while I was at Wal-Mart, I was rooting around in the $5 movie bin and found a Planet Earth dvd and a Blue Planet dvd... and I got them! Not only is it a reward/treat for myself because I've been doing so well, but it's an investment for those future days when I'm not feeling well and end up on the couch watching movies. So it's a reward and an investment! Am I good, or am I good? :)

I'm tired. Very, very tired. I didn't overdo it, but I am ready for bed... especially because the gal I'm tutoring is coming over at 10 am tomorrow. Also, hopefully C and I will be able to hit up the antique car show tomorrow! If he can't make it, I'll go on Saturday on my own. It's a kind of tradition for me to go every year, and I don't want to miss it, even if I have to go by myself. I'd much rather prefer to go with C, of course...

And, with that, I'm off!
I wish there were some way to capture the funny, meaningful, really cute, and totally hilarious moments that happen throughout my days.

Some examples...

My maid of honor's four year old seeing us off as we drove away to do wedding stuff. He gave me an air kiss, then waved and said, "Okay, be careful! Be safe!" So. Cute.

C and I "making googly eyes" at each other. Instead of looking at each other sickeningly and batting our eyelashes, we just look at each other and say, "Googly googly googly!"

C holding me while I cry. Last night was rough for me, emotionally... My last post kind of makes that obvious, heh. After posting, I crawled into bed and just started crying. C was trying to vanquish the world and had his headphones on, and it wasn't one of those "relational cries" where I want him to come over and cuddle with me and then we can talk about stuff and it'll all turn out okay, it was just a cry where I needed to cry. I just needed to be sad for a while. Well, C's girlfriend senses began tingling, as they always do when I cry, and he took off the headphones, came over and laid down beside/propped up above me, and wrapped me in his arms. I explained what I was feeling (basically what I posted, but with more swear words and expounded a little bit), and then I just sobbed. He just held me close and let me cry. When the tears abated some, he told me a few things that warmed my heart. He said, "I know what you want (to be a "real person" again)(kiss), but I know that you'll make the best of it (kiss) and it'll be okay. (kiss) I'm not going anywhere (kiss), and I'm gonna be right here beside you the whole time. (kiss)" Yes, he was kissing me in between declarations, which was super sweet. I told him how grateful I was for him, and he again said that he's not going anywhere.

When he sat back down to his game, he offhandedly remarked, "I think I've probably lost this one..." I replied, "I'm sorry I made you lose." He then said, "Some things are more important." *Sigh* What a good guy.

C's reaction to my eating his cheese. He went into the kitchen last night, while I was in the room reading. All of a sudden I hear this loud holler drifting through the apartment--"You have greedy little fingers!!" (I initially misheard it as, "You have three little fingers!") It took me a minute, and then I realized that he noticed I had taken (and blissfully eaten) two of his mini Baybel cheeses yesterday. Hehehe... Despite his accusations that I ate all of his cheese, I did, in fact, leave him one.

There are countless other little moments that I wish I could record and store away for future browsing. Ah, well... maybe the transience is what makes them so sweet.
Today, I told someone that I was disabled as a way to summarize my situation. It was easier, at the time, but dear God what it did to my heart...

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

Fuuuuuuuuuuuuuuuuuuuuuuuu....

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

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

Really?

Really?

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

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

This is my best now.

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

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

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

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

Define yourself by your abilities. Many of us have found abilities we never knew we had once we became chronically awesome. This isn’t the loss of your life, just the beginning of a new, and different life.
Communicate daily. Do not fall into the black hole of chronic illness. Talk to someone every day. Be it someone at home, on the phone, or via social media.
Every conversation does not have to be about your illness. There is so much more to you than your condition. You have so many interests, and so much about you that does not go away just because you are sick.
This may be a tough one but, get up and bathe and put on clean clothes every day. Ladies, if you are the make-up type, just put on a bit of gloss and mascara. Make yourself up a bit. When you look good, you feel good. If you simply don’t have the energy for all of that, maybe just a hairbrush and a clean set of PJ’s will do. Feeling fresh goes a long way.
Keep the faith! Whatever your faith or belief is, keep it strong. If your faith is in God, or yourself, just keep strong, and keep believing.
This is not your fault. You did not ask for this. Looking back over your shoulder and wondering why this has happened to you or what you could have done differently will not change where you are now. Always look forward. Never assign blame.
Don’t stress the small stuff, and it’s all pretty much small stuff! Stress can trigger flares, depressive or manic episodes, and all kinds of chronic symptoms that we don’t want. Learn the difference between problems and inconveniences. Many things are really inconveniences. Take a deep breath, get centered, and think. Learn to respond, not react.
Affirmations. Here is a simple one. At some point in the day, say to yourself, or write in a journal: “Today I was Chronically Awesome because…” and list all of the great accomplishments of your day. Anything from showering and getting dressed, taking a walk, to doing a half or full day of work at the office. Whatever you got done that makes you proud. “Today I was Chronically Awesome because I walked to the corner of my street and back.” Some days your list will be very long, or full of amazingly big things, other days the list might be shorter.
What matters is that you accomplished things, you own them, and they make you Chronically Awesome! Be proud!"
So yeah. That's that. I'm gonna try to take those words to heart and not get beaten over the head and heart by this new reality.
Sorry for turning into a sobby sadbucket. It's just that some days it really hits you, you know? As much as I'd like to be cheerful... I'm not big into faking it. Especially here.
Rolled out of bed this morning bright and early (like, 1 1/2 hours earlier than normal!) and guess what? I haven't had to take a pain killer yet.

I mean sure, I don't feel like jumping up and doing a table dance, but it has literally been months since I did not need to take a pain killer upon rising.

Today looks to be a very long and busy day for me, so I'm grateful for the gift of diminished pain.

I know that I'll be taking one later, of course. I can feel the pain levels rising the longer I'm awake, which is normal (tongue in cheek), but, still... Almost an hour awake with no tramadol? Whoopee!!

I've got a free massage in 20 minutes that I must go get dressed for :)

Side notes: I wonder if my falling pain levels of the past few days are due to the increase in gabapentin?  Or possibly Savella?

Also, yesterday I was out and about without my walker! There was pain, and at times I almost wished that I had it, but I made it the whole day without :)

I think the frequent massages are contributing to the pain levels falling, as well.

Update: Yes, well, *ahem*... I was rather pain-free! Unfortunately, I did overdo it a little during yoga... Okay, maybe more than a little... But I was trying to be aware and be good to myself! I really was. It wasn't until it was too late that I realized I had done much too much in the realm of movement and exertion. Alas.

So I did end up taking a pain killer, and I busted out the walker. (Which, by the way, was noticed and commented upon by a stranger in a positive manner! We had a fun little conversation. She was very empathetic, not because she personally knows someone with a chronic illness, but because she went to medical school.) Howeverrrrr... it is now 9 p.m., and I've only taken one tramadol today! Whooooeeeee!

Okay, see, here's the deal... I tend to black-and-white generalize things, especially myself. Example? When I had gotten to 6 hours between pain killers, I assumed that was my new norm. When I had to go back to 3 or 4 hours, I was tempted to be devastated. I had failed. I had broken down and ruined my positive forward progress. But you know what today showed me? Every single day is unique. I can't expect that just because I didn't need a pain killer this morning I won't need one tomorrow. I cannot, cannot, cannot say what tomorrow will be like, so I just gotta take it as it is and roll with it.

Mindfulness. Being present here and now. One moment at a time.

And today, when I realized I'd overdone it? I was overwhelmed with disappointment in myself, initially. I really was so disappointed that I'd now need a painkiller, because I had intended to go the whole day, if possible, without one.

But I stopped and talked to myself kindly, and basically I chose to celebrate the success of having made it that far in the day without a painkiller or the walker, rather than dwelling on the "failure".

It's kinda funny, too, how my mind works... this morning, feeling pretty good, I began to worry if my feeling better somehow negated my past sufferings. Like... was I ever really sick? Was it all in my head after all? Because I feel good, sooooo... maybe it doesn't count? Maybe I was exaggerating?

Yeah, no.

I still can't hit the ground running at a thousand miles an hour.

It does make me wonder, though, what life will be like as I continue to heal and find balance... I know I don't have to worry about it until I get there, but I'm wondering about coping with the dichotomy of "good one day, bad another", you know? I mean, I know I've been there before with my guts and all, but this is a whole new monkey to wrestle.

I am too black and white, all or nothing. I know this. If I feel good, I should always feel good. If I feel bad, I'll always feel bad. Any break the pattern is cause for alarm! lol

I'm going to go cut out hearts for the wedding, now. The flower boy will be tossing 8 bit hearts instead of flower petals, and then he'll hand C a laminated 8 bit heart that says, "Marry me?" (I'm including that because, since C proposed, I frequently ask him to marry me. He always says yes. ^_^)

(See? 'Cause we're nerds, and I love Legend of Zelda.)
I'm excited-- I was able to purchase a large heating pad off of Amazon tonight that has the option of also being a moist heat pad! It was fairly inexpensive, with many good reviews, so I went for it. No more of this hot water bottle that I have to get up and reheat every twenty minutes and shift around to different achy spots. Now I can use the heating pad and the water bottle, if I so please. Also, it's a "king size", which means that it will cover most of my back with ease, not to mention that it has variable heat options. *sigh* I'm just so happy!

The best part is that I have some extra money stashed away to be able to treat myself in this way :) I realized that I have like, 60 bucks in my bank account that has no purpose assigned to it-- just "savings". (That has not happened in a very, very long time!) I have the temptation to spend it, simply because I'm not used to having money to spend ^_^ I won't give in to it, though. I'm more practical than that. I'm going to scoot on down to Jiffy Lube and get myself an oil change and inspection. My car is very valuable to me, and I confess that I haven't been very attentive to it... It's so sturdy, it just kinda keeps going no matter what, and I don't want to take that for granted.

And this week, I'll be able to sock away a few more dollars from my allowance, which is nice.

Health-wise, it's been a bit rocky. I didn't have to use my walker today while I was out and about, but I was battling "fibro fever". I have begun experiencing this phenomenon recently, but it wasn't until I saw someone else refer to it on a fb fibro support page that I realized it is something other fibro-fighters experience. Basically, it's like I'm feverish... but with no fever. I feel achy, my skin is sensitive, and I have intense chills. Not only do I get the chills, but it's like I'm constantly hot and cold at the same time. I put on a blanket because I have goosebumps, yet at the same time I'm sweltering. Weird. I had it bad during the period when I was unable to get my painkillers, and I had it today. Fortunately, the meds kept the worst of it at bay, though they did not touch the brain fog or the incredible fatigue.

My guts are still bleeding. Bummer. And I had to resort to cleaning out my colon again a couple of times. But, on the bright side, I've got my upper endoscopy scheduled for a week and some change hence! (Bright side, you say? What's so bright about that? lol)

I'm still learning to be kind to myself and not "push" as hard.

I had been making progress on the pain meds, being able to go up to 6 hours between pills on some days, which was very exciting for me! Yesterday and today, however, the time period got cut in half, roughly... and it was hard for me to accept that. My pride wanted to wait the extra three hours, though my body was telling me that I had better take that pill if I wanted to be able to walk or sleep.

And it's still hard for me to look at days like today, which was a mostly "resting" day (to me), and see it as time legitimately spent.

I feel lazy, y'all. I feel impaired.

I know it's not so, but when I can't do things, or when I have to so significantly alter the amount of things that I can do in one day, well... it just messes with my head.

I hate having to explain myself to people. I think I'm just gonna stop.

I hate feeling like maybe I'm not doing my best after all... like all this is just because I'm not trying hard enough...

...like maybe there really is something wrong with me because I'm "so young, and shouldn't have to be on all those meds" and "shouldn't need a walker" and shouldn't this and shouldn't that.

You know what?

Fuck that noise.

Shouldn'ts are just as bad as shoulds.

I think the Should Monster just put on another mask to get to me. Because, really? Shouldn't just leads right to should. If you shouldn't do one thing, then obviously you should do another.

So if I shouldn't need a walker, then I should be walking without assistance.

If I shouldn't need to take all those meds, then I should be able to get along without them. I should be able to make it work.

I should be healthy.

That's what it all boils down to. This message that somehow I am not what I "should" somehow inherently be.

And they're right, in a sense. I don't like living in a world where toddlers die of terminal diseases. It shouldn't happen. It's not right. It's not fair.

But the fact that they are sick at such a young age reflects not a whit on their value as a human being, or their ability to live life to its fullest, or what have you. It doesn't mean anything other than that they were unlucky, and they have a harsh battle to fight.

So I'm unlucky. Deal with it. But it's not my damn fault that I'm sick, and it's not my fault that it happened while I'm young.

Would it be better if I waited until I was 80 to get sick? Would you prefer that my body is worn out before I try to fight this battle? Does that somehow make it "fair"? Does that make it better?

Who says old people "should" have walkers and "should" be on all kinds of meds either?

Being sick sucks, no matter your age.

By the way, you know what else really grated on me this weekend? I realized that one of the reasons I was so annoyed about the attention my walker got was that not a single person out of that whole huge crowd said a word about how awesomely I had decorated it. Its presence was practically offensive, even though it is beautiful. I mean, it's like a mobile piece of art, but did anyone notice? No. It was just "Oh, you have a walker. What's wrong with you?"

I would have like to have heard, "Oh, you have a walker. Wow, you really made it look cool!" Or something to that effect. I've gotten several compliments on the Bling Chariot, and fun conversations when I'm in medical settings. Maybe it's cause they're used to seeing people with problems, and the average person isn't. But, still... acknowledge my effort, people!

I'm trying to make the best of this in all aspects, and I feel like I'm just getting cut down left and right by people outside of my support system. Why is that?

Maybe it's just me. Maybe I'm just hypersensitive or something.

Maybe it's 'cause it's late and I need to be sleeping.

Yeah, that's probably it. (But I've been thinking about that last walker bit since yesterday, so I know that's legit! lol)
Okay, I know the title of this post sounds like a downer, but I'm really not depressed or all angsty or anything. It's just how I would sum up my how I was feeling on Saturday.

Going to church screws me up.

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

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

I don't like it.

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

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

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

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

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

The hardest part was the walker.

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

"What's wrong with you?"

Okay. Pause. Breathe. Think. Process.

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

But really?

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

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

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

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

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

What's wrong with you?

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

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

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

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

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

Don't try to fix me.

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

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

I hate, hate, hate that!

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

*sigh* Moving on...

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

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

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

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

  • Red toenails <3
  • Still waiting impatiently for a good house to pop up
  • SUPER excited about the nearness of the wedding and the belovedness of my beloved
  • Beginning to be overwhelmed by wedding stuff... afraid of failure? (Little details keep popping up, and I'm wondering what else I've overlooked?)
  • I've filled up my plate to the max; no adding anything else. (Work, school, tutoring, wedding, doctor's appointments, sexual assault support group, managing health)
  • Finally got a consistent schedule going... for the moment.
  • Thinking about calling my dad...
  • Feeling a little bummed at Mom's (perceived) unavailability right now, because I'm feeling really insecure and vulnerable about the upcoming wedding, but also excited, and I was hoping for support from that corner 'cause she's been there fairly recently, plus she's my mommy. (I understand that Mom has her own stuff going on... and a lot of it. But still bummed.)
  • Going to church this Sabbath for the grand opening of my grandparent's new church building. (They've been working towards that goal since '95!)
  • Grampa was so excited to hear that I'm coming to church. Suuuuper cute :)
  • Feeling insecure about popping up at church after all this time. I know the people there love me and are well meaning, buuuuut... I'm going to be exhausted by the time I leave, I'm sure. Well-meaning questions. Not to mention I'll have to have my walker with me...
  • Got a flyer for my church's Revelation Seminar in the mail the other day. It felt weird to be on the other side for a change.
  • I'm able to go 5 hours between Tramadol now! That's up from 3 or 4 before the refill, and I don't double up anymore.
  • Still losing weight... I estimate between 1/2 lb. and 1 lb. a week, roughly. E is freaking out, afraid I'll get too thin. (Mexican mommas... what can you do?) I haven't lost my boobs, though, so I'm content.
  • I realized the other night how attractive I am. Caught a glimpse of my reflection in the mirror and noticed the shadowing of my arm muscles. I turned around and noticed how muscular my back is. Came to the conclusion that I'm hot. (C merely shook his head in disbelief that it took me this long to figure it out.)
  • I'm gonna look fabulous in my wedding dress! I'm thinner, I'm toned, clear skin, whiter teeth... Daaaaaaaamn. lol
  • Mom ordered her side of things this week and shipped out my dress!
  • R bought the family's tickets today. They're really, really coming!
  • Sent the S's my share of the money for H's fare. It was more than I had remembered, and I'm grateful for that.
  • C just kissed me real nice.
  • I selected my wedding jewelry today, and it's super meaningful.
  • Contrary to the last time I took out my earrings to clean the piercings, I was able to get them back in on the first try! (Also, I tried on a pair of "real" earrings and got those in on the first try as well.)
  • Never get too comfortable walking around your home in the buff. You may end up full-frontaling your room-mate at 5:45 a.m. (Sigh....)
I went to the park in my heart today.

See, I was at work, and I glanced out the window and realized that the weather was getting continuously more cloudy and slightly chilly with a light breeze, yet with sunlight still pouring through and I thought, "Man, I'd really like to go to the park right now..."

And I had this super-vivid vision of myself at the park I wanted to go to, and what I would be doing there, right down to the frosty can of green tea in my hand. I thought about it, mulled the concept over in my head, and then decided that you know what? I need to be kind to myself. If my inner child wants to go to the park, then to the park we will go!

However, when I got off of work and drove back home (work is 1/2 an hour outside of town, unfortunately), it was time to make some food. I knew that by the time I finished making and eating food, there wouldn't be much daylight left, and it would be getting chillier. I didn't want to drive all the way across town and use precious gas for just a few minutes of calm reflection before I had to pile back into my car and go home. Also, after looking inward and taking stock, I realized that I didn't really have the energy required for a trip to the park anymore.

See, I love my job, and I love to work. It energizes me, fills me with enthusiasm and satisfaction, and gets me all happy. I feel like I can take on the world after a good, productive session at work. (I would say "work day", but since I only work a few hours at a time on any given day, well...) So while I was at work, going to the park was totally possible! On the drive home, however, the enthusiasm began to wane, being replaced by, well, realism.

So I thought about it and considered what to do. What, in this situation, would being kind to myself look like? I did want to go to the park, but I also want to take good care of myself...

In the end, I went to the park in my heart. I thought back to the vivid visualization I had of myself in the park, and sat there for a while, enjoying myself. Then, I went home and made some good food and rested. It was quite enjoyable, actually. I feel like I got the best of both worlds :)
A lot has happened just in the past few days!

I was doing some research on fibro a few days ago, and learned quite a bit. This site has been a huge help in understanding my situation in layman's terms, and kinda coming to grips with the fact that, hey, I'm not the only one who goes through this! I mean, I knew that before, but it was more of an intellectual assent, rather than a realization that my struggles are shared by others. Granted, each one of us struggles uniquely, buuuuuut... I'm not as alone as I sometimes feel. (It seems that whenever I hear of others who have fibro, or meet them--which is a bit rarer-- it's either discouraging because they're totally disabled now despite their best efforts, or it doesn't really affect them and they don't understand why I have such a problem with it. Either way, I come away feeling kinda... mer. Oddly enough, the person I identify with most and draw the most courage and inspiration from are my friends with cancer!)

While researching J's gift, I ended up coming across a book that deals with sex when you've got a chronic illness. I, of course, don't seem to need much help in that area lol, but I did the "Look Inside!" feature, out of curiosity, and what I read blew me away. The section that I read was not about sex, really, but about the different "myths" about people with chronic illnesses. I ended up ordering the book, because I feel that it will help me better come to grips with my condition and not get so down on myself for being "compromised" and not being "enough".

I tell you, the Should Monster has a heyday with my illnesses, because when it whispers in my ear that I should be functioning at a higher level than I am... I agree! I want to be better than I am, and I find myself in dangerous territory. It is a constant battle to maintain hope and courage without crossing the line into Should-fueled functioning. I did overdo it yesterday, and I'm paying for it today. (I'm actually sitting in my rheumatologist's waiting room as I type this, and I'm going to tell him how badly I'm doing, and how rapidly the decline is going. I'm going to tell him that I literally cannot function without painkillers anymore, and even when I take them, it's to keep the pain at a 3 or 4 so that I can function. It doesn't take away the pain. It just makes it bearable.)

While in yoga last week, we chose an affirmation/intention to repeat as a mantra while we went through our movements that day, and I chose to repeat, "I am perfect health." I've been trying to maintain that as a mantra throughout the week, but I honestly felt like a hypocrite when I say that, because I'm not perfect health, and that's pretty obvious. So am I to deny reality in favor of wishful thinking? Then I got to thinking about what "perfect health" means, and I wonder if "perfect health" doesn't mean something different for every person? Like honoring your practice, finding your own personal, optimal balance... I dunno. Still figuring it out. But one intention that really worked for me, and that I've found coming back to me quite frequently, is one that says, "I am enough."

That's especially important for me to believe right now as I'm down so low health-wise. I mean, a One Thing A Day Rule? I could so easily run with that and kick myself into a depressive, discouraged spiral... but I won't. Because no matter where my health is at, no matter what my abilities to achieve are, I am simply enough. My being enough does not hinge on what I can or cannot do, it is because I simply  am. Even if I were in a vegetative state, dependent upon machines for the very breath in my lungs, I would still be enough. And you know what? My beloved agrees! He has proven that he will not leave my side, no matter how much or how little I can do, no matter how ill I feel, no matter that I can't take care of him in all the ways that I would like to, that I can't fulfill my dream ideal of "wife" or "partner". Nope, I am enough for him, simply because I am. He loves me, not my chores :) And that is an amazing, amazing truth to hold on to.

The same with my family. They've seen me through so many ups an downs, twists and turns... so many changes in my life and lifestyle while trying to be a good person and live a good life... but they've always just loved me, because I am enough. Whether I'm a SuperChristian or a fornicating heathen, whether I can take the dogs for a jog or have to depend on the Bling Chariot to get around, whether I cook amazing food or cook amazing food (Hehe...), they just love me, because I am enough. Me, I, just myself, I am enough. It doesn't matter what I can and cannot do. And I feel the same about each and every one of them. They are enough. They really are. So that's something that I've been hanging onto lately.

So, back to the fibro research! That was a divergence, but an important one that I needed to get out.

I realized after reading an article about fibro and pregnancy that C and I will have to be very intentional about starting a family. We can't just show up pregnant one day, because I will have to get off of all my meds prior to becoming pregnant, else they might adversely affect the baby. And we saw how that kind of thing goes with the colonoscopy, (very, very badly, if done abruptly) so I'll have to spend a good period of time weaning myself off of them, particularly the painkillers... And that means that I'll have to be in a decent place with my fibro to begin with, so right now is clearly not a good time to be considering a family! (Also, I'm not allowed to be pregnant during the massage therapy program, so it's rather impossible at this point...) So basically, we should start planning our pregnancy about a year in advance, to give me time to wean off of the meds and rely more heavily on alternative therapies to manage the pain and symptoms. It could definitely be a good thing, as I might be able to simply stay off of the meds afterward, which is my goal for some point in the future anyway... and I'll have to be off of them as long as I'm breastfeeding, of course. I did read that, though fibro does not adversely affect a pregnancy in the physical sense, it does aggravate the pregnancy symptoms that women typically experience, and I guess pregnant ladies are more prone to fibro flares. So it really could be a miserable time for me, and afterward could be pretty bad (because one of my triggers is lack of sleep, and we all know that newborns don't exactly let you lounge around in bed all day...), but I just have to decide whether it's worth it and if it's something that I really want. (I do.) C will have to step in and help balance out the domestic load for me, or we'll have to have someone come in and help for a while, like a live-in nanny or something, because I don't think that I can just hit the ground running like some moms can. It'll definitely be a planning scenario, that's for sure! No spontaneity here, lol. And while I'm on birth control for other reasons, I am very grateful for the fact that they let us decide when we want to have children. It is a distinct advantage, in our case.

And the last thing that I wanted to touch on before I get to my One Thing for today (putting away laundry and unpacking my suitcase-- I haven't gotten to it yet, because other One Things seemed to be more pressing!) is the wedding.

I was definitely disappointed to find that so many of the people that I wanted to share my big day with weren't able to come. You hear that saying about how the wedding is about the bride and groom, right? Well, for me that's not entirely true. For me, the day is about us, yes, but also about the people that I care about. That is a very important part of the occasion for me, and I felt like that was being ripped away from me, leaving me helpless and sad. Another part of it is that I have so many people that I love scattered so far and wide, and they've all impacted my life in such a huge way-- these people have helped to make me who I am today! So how can I have a celebration that is essentially about two people without honoring those who helped contribute to the forming of those two? It doesn't make sense to me. Many of these people have never met each other, and I feel like they should, because they're all puzzle pieces that make up the whole that is my heart. So I had really set a lot of hopes upon all my loved ones being there, I guess, and to not be able to do anything about them not coming, well... it was a bit tragic.

You can imagine my overwhelmed joy, gratitude, and utter shock when C (adopted mom) called me yesterday to inform me that they've been working behind the scenes and have decided that if I can give the money I'd set aside to help J travel to the wedding (which she won't be needing anymore, obviously) to them, then they will put together the rest that's needed so that H (one of my besties and my day-of coordinator) can drive down with K and J, as a wedding gift to me.

Let me repeat that in less convoluted terms.

C and D are gifting me with the presence of H, J, and K at my wedding. Sure, they're my day-of coordinator and my musicians, but they're more than that-- they're my friends, my sisters, my companions in the journey of life! They've been there for some of the hardest parts of my healing journey, and now they get to see all that hard work come to fruition as we celebrate my happy, healthy relationship. It would have been amazing for them to come without any problems, but for this gift to come from C and D makes it super, super meaningful. It's like a part of C and D will be there, because they sent my friends. They are the ambassadors of love from C and D, and I am profoundly humbled to realize that they love me that much. (And why? Because I am enough. ^_^) It literally brings tears to my eyes, because I don't know what to do with that kind of love, or even how to absorb it, really. It makes me want to just throw myself at them in service and somehow show them how grateful I am for them and how much I love them, too!

I am going to work my tail off to get this internet idea to become a reality. I know it's a possibility, but I am going to make it work! I need to be able to share this with them. My gift to them, I guess....

See how happy I am? It's because of you, what you taught me... the hope you gave me... I wouldn't have believed in happy, healthy marriages if it weren't for you two. I had no hope, but you changed all that. So see how happy we are? It's because of you. Thank you.
Well, life's gone and taken a turn for the better again. I love how it does that. I think the meds have something to do with it...

My goal with these painkillers is not to be pain-free, but rather to keep the pain at a level 4.5 or below so that I can function. I have to keep reminding myself of that, because it's so easy to slip into "let's take another" mode. I can't afford to do that, though, because I really really really don't want to become tolerant to the only thing that helps me out at all.

I've been eating quesadillas pretty frequently lately... ("Pretty frequently" being relative to how many quesadillas I've had in recent years, which is a big fat none!) I think it's 'cause my body is craving protein, but it just can't digest it. Beans, nuts, meat... nothing. It just sits there. Blech. But even though cheese does slow down my digestive processes some, it actually digests, so I figure it can't be all that bad for me right now. Quesadillas and applesauce-- one of my favorite meals right now. (Uh, the applesauce doesn't go on the quesadilla, just in case you're wondering...) I have an appointment with my gastroenterologist next week, so we can discuss my results. I'll have to tell him that, even though my colon is looking great (and I'm SO excited about that!), I'm still having the same problems. We'll see what he says.

I'm being good and sticking to my "one thing a day" rule, and I am noticing no difference at all. lol. Even though I don't feel like I'm getting better, I do see that it's helping me to stabilize. When I'm more conscious and aware of picking and choosing what I get to do, I don't get (as) caught up in the whirlwind of things I want to accomplish and totally burn myself out. I can feel myself wearing down and catch it. I took a nap the past two days (back to that again), and it felt great, especially since I've been really having sleep problems lately.

Did I mention that I'm a tutor now? A friend of mine from school will be coming over a couple of times a week and I'm helping her with her online English course. Funnily enough, it's the English course that I dropped last semester because I had too much on my plate! So I guess I get to take it again ^_^ She paid me a small sum for the first session, and she's coming back tomorrow. I don't care if she pays me, although it's a nice addition to the gas tank if she does. The last session was very tiring, but that could also be because I'd been talking to R for an hour and a half before she showed up.

It was really good to talk to R. I miss him. He gives some of the best advice... but it's not in the form of "here, let me tell you what to do". It's more like talking through the issues and sharing anecdotes from his past and the lessons that he's learned, and also, his concern and care are practically palpable. I talked to him about my marriage fears, and the ideas and examples that he shared with me really helped to ease my mind and heart a lot. I really feel like I can go through with this wedding without feeling like a hypocrite now. (Because I wasn't sure that it was fair of me to get married while still so terrified of the notion, you know? Like, does it even count?) And no, it's not that I'm fearful of marrying C, it's that I'm fearful of what marriage will do to our wonderful relationship, fearful that it will change it for the worse and turn us into one of those couples that doesn't even like each other and doesn't want to be together but won't separate because they don't believe in it... just living separate lives, or fighting and undermining each other...

But I digress. R explained how marriage does change things, and it takes work, and there are ups and downs and you don't always feel happy and necessarily want to be around that person... but the thing is that you chose them, and you love them, and you really do want to be around that person, forever. It's like the long-term, big-picture things weigh in above the short-term, immediate circumstance things and you hang in there through the rough times because you love that person and you want to make a life together. That's what I got out of it, anyway... that even when it's rough, it's still enough to know that you want to be with that person and you love them. And really, I understand that, because C and I have had quite a good share of "rough" already, what with the rocky beginning and my PTSD flares and all the adjustment that comes with living together, and now my fibro and other health problems... We can do rough. Even if I'm crying every night, which I've done during certain stretches. But see, the thing is... it's never about not wanting to be with C. It's about what's going on around or inside me, it's about money or my past or my fears or what someone said or how I feel about a certain thing C is doing or has done... but it's never about un-choosing him. So I think I get it, a little. Maybe not entirely, but I get it, some.

R and I also talked about what's going on with that whole DV thing that went down a while ago. It's cool to see that he fully admits that he made mistakes that night, and that he went overboard, but I do agree with him when he says that he's not domestically violent. I overreacted to the situation too, and hurt him very much, which I regret. None of us can take back what happened, but he's really getting the crappy end of the stick. His retirement is in danger, all this crazy stuff is going on... but he is determined to "take his lumps", as he put it, and just slog through this mess the best he can. I'm proud of him. I'm also really proud of him for the steps forward he's taking in managing his anger. He actually consciously processed through why he was angry the other day, and made the decision to let it go because he didn't want to ruin the day/evening for everyone else. That is so mature. I've never heard him do anything like that before, and I'm really impressed. Not to say that it's going to happen every time, of course, because really? Let's be real. One step forward, two steps back. That's how this stuff goes down, and R is a human being who is learning and growing. But he is stepping forward, and what's more, he wants to be stepping forward. If that isn't worthy of respect, I don't know what is. I'm so proud of my daddy :)

Today was a great day, in and of itself. C and I hit the shooting range mid-afternoon, because pistol qualifications are coming up and he needs to practice. We'll be heading out there next week, too. I took my homework and did some reading in between picking up his empty shells to be refilled. We would have stayed longer, but C ran out of ammo, so there really wasn't much we could do but pack up and leave. When we got home, we decided to watch some Star Wars, as I'm currently watching my way through the series. Since we need to do our own music after all, we have now settled on the Imperial March as our exit song :) Seriously, if our marriage has half of the tenacity and determination of Vader and the Imperial forces, nothing can stop us. I see it as a good omen.

While getting ice cream, we (mostly I, as C was occupied with choosing his ice cream flavors and paying for our treats) met a young couple our age who share some of our unique interests and hobbies! It's funny how it all worked out, but it started when the guy, J, commented that he liked my choker. (I was wearing the collar that I recently purchased.) That led to a discussion about Renaissance festivals, and it turns out that they're Rennies, too! They're heading up to the Ren Faire soon that C and I will be visiting the week before our wedding. As the convo progressed, we found out that we were similar ages, newlyweds both (C and I are due in 6 weeks, and they've been married 4 months), and--get this-- he's a gamer like C. He plays the same games, but his wife, C, is like me and mostly watches.

I gave the card of the leatherworker who made my collar to J (yes, another J to add to my blog! lol) and ended up writing my email and fb info on the back so we can get together and hang out. They're pretty new to the area and looking for friends, and I'm looking to expand my social circle as well. We really hit it off in the short time that we talked, and I'm looking forward to hearing from them. J said several times (and his C affirmed it) that "we'll definitely hit you guys up soon!" I'm excited :D

What's crazy about the whole thing is all the little bits and pieces that had to come together just so in order for us to meet this couple. First of all, I'm surprised that I had the leatherworker's card in the first place. I usually don't get or keep business cards. Secondly, I was only wearing the collar because I was wearing a particular dress that I like to wear the collar with (though I only put it on to go out, and wasn't wearing it around the house today), but I was only wearing the dress because of a comment C made last night that led to my wearing it today. If I hadn't been wearing the dress that led to the collar, or the collar that I debated about putting on before we left the house, the conversation never would have begun in the first place.

Okay, so then there's timing. We were going to go to Target right after we finished our movie (and there's the whole thing about what if we'd stayed at the range longer, what if we hadn't watched the whole movie, what if this, what if that, etc.), but we got a bit... distracted... by each other and didn't leave for a little while longer. So then the shopping and browsing all took place, but if I'd spend less or more time at any of those stores, we would have missed them. If the frozen yogurt place had been open, we wouldn't have gone to Coldstone, and we missed the closing time by just 7 minutes.

It's really crazy how all those little things worked together so that we would be standing next to each other in line and I would be wearing a conversation piece that appealed to all involved. Crazy, I tell you. Even if nothing ever comes of this, if no friendship ensues, the event itself was so cool that it just makes me happy to think about it. Plus it was really fun, 'cause they're great people! We had a blast chatting it up. I really do hope that we can become friends. (Plus I feel super adult, making friends with another couple, you know?)

I wrapped up my day by drinking mint tea to soothe my roiling tummy and filing my taxes. Not a bad ending to a good day, especially since I'm getting a decent sized refund. It's enough to pay off the bulk of my credit card debt, and I'm very, very pleased about that. I hate being in debt, even if it's totally legitimate debt.

I think I might be able to take another whack at my homework before turning in for the night. Think I'll go read my chapter on the bed while I listen to C hack apart monsters in Guild Wars. That sounds pleasant :)
Okay, so C is totally not into holidays, especially sappy ones like Valentine's Day. I'll admit it-- I've been an Anti-V-Day-er for a long time as well. It really isn't anything but a fabricated "holiday" designed around materialism and gain for the candy and card companies. Granted, florists get a huge boost in income, but... I just don't see the purpose to it. (I might also be a little bitter since I can't eat 99.99999% of candies and chocolates produced...)

Well, regardless of my feelings about the holiday itself, I saw it as the perfect opportunity to love on C in an extra-special way. So, no, he didn't do anything for me, but I had already asked him if he was going to and he did not give me any illusions of hope. I, however, lined up a deliciously sweet surprise for him.

When he got home from work, I was waiting in the candle-lit room with soft piano music playing in the background, wearing nothing but flowers and vines made of melted (safe!) chocolate and strawberry slices. On the desk I had arranged a silver tray with a small bowl of melted chocolate, strawberry slices, two champagne glasses, and two miniature bottles of sparkling cider in different flavors. I also had a card waiting for him, but it took a while for him to notice that amidst all the other distractions.

When he walked in and saw me, I said, "I got you flowers and chocolate! ^_^" He just laughed.

The poor guy has to go through a bazillion steps to get in and out of his multi-part work uniform, but it was amusing to see him hurrying to get out of it while casting longing glances at the bed and my strawberry-laden form.

He cleaned me up as best he could (and enjoyed it thoroughly!), and I tapped into my creative side to paint him up with chocolate as well. (Needless to say, after the fun and festivities were over, we had to head to the shower and clean each other up the real way.)

In between rounds of painting and de-painting (and all that goes with it), we snuggled into his oversized computer chair and browsed sexy pictures together. That, of course, led to another bout of chocolate-inspired loving, followed by our steamy shower.

It was so much fun! It wasn't just about the sexy stuff, though. He read the card I got him and really liked it, and we were both surprised that a card existed that summed up what I would say so succinctly.

The card read thus:

"Why do I feel so good with you? Because you still surprise me. Sometimes you touch me or smile a certain way (and you don't even know you're doing it) and I remember what made me fall in love with you. But there's a deeper reason, too... it's because I believe in you. Your inner strength and your solid values make me feel secure. I know I can trust you... and that's a really good feeling.

You keep life real and you've helped me see that material things are not nearly as important as what comes straight from the heart... like honesty... like love. So, yeah, I feel really good with you and I know that good feeling is going to last a lifetime.

Happy Valentine's Day"

I added an inscription, which said:
"I am looking forward to the honor of becoming your wife. With all my heart, all my soul, all my trust, respect, and eternal loyalty, I love you."

Oh, yeah, and it had two owls on the front of the card. I love owls. They've always had a special meaning to me. So it didn't even matter that the card is 7 different shades of pink... it was perfect.

I loved surprising him, and he liked it too. As we were cuddling while drifting off to sleep, I asked him, "So... happy with your Valentine's surprise?" He grinned and said, "Yeah. It was good."
Warning: This post may be considered by some to be a downer, because I'm going to talk very candidly about life with a chronic illness that can cause high levels of pain and frustration. Do not, however, assume that I am down, because I'm not! Though I may have my moments, my hours, my days, or even my string of days when I'm just burnt out and tired of this whole shebang, overall it's something I'm coming to terms with and try to view as an opportunity for growth.

So. That being said...

The last few days were hard. I mean, really hard. And by really hard, I mean really really really really ridiculously difficult. I thought that I was being accurate before when I said I was "destroyed"... but I didn't know the meaning of destroyed. (Hopefully I won't have to learn new depths of that word!)

First of all, I've had a lot going on these past few weeks-- first the colonoscopy, which pretty much devastated me, mucho wedding prep (and I still haven't sat down with my fear of getting married and begun to really process through it in any meaningful way); long, stressful travel hours; the few days with D, coming to grips with his impending death and saying goodbye; the shock and disappointment of much-anticipated guests not being able to come to the wedding; more long, stressful travel hours; dealing with an increase in symptoms and pain levels and trying to cope with that... and then I ran out of pain meds.

I'm so grateful that I asked for painkillers and that my doctor prescribed me something without hesitation. Let's put it this way-- this morning I took 3 ibuprofen and never felt a thing. NSAIDS barely even put a major dent in my menstrual cramps, let alone this kind of pain.

I ran out of painkillers on the day I traveled back home. I was already hurting quite a bit when I went to bed, but the next day it had just increased. Today was even worse, especially because it's not just pain but nausea and balance problems and sleep problems and total brain fog and gut pain upon eating (whenever I can even get around to eating)... It sucks. As I thought back on it while submerged in my hot bath earlier, I came to the conclusion that if I didn't have these pain meds that actually worked, I would so not be willing to live life the way that I have the past few days. I am not joking. I could not do that long-term. I would literally seriously consider suicide if I had to do those pain levels and all the other stuff for an extended period of time.

See, the thing is that it wasn't just one kind of pain; it's a pain that has layers. The bottom layer is a generalized ache, like the kind you get when you have a bad fever. Everything hurts, whether you're moving or laying still, and your skin is super tender and it hurts to even have clothes pressing against your skin. Your scalp hurts, and even your teeth hurt. To have water splash your skin is a violent, painful shock, no matter the temperature. The weird part was that I had no fever at all, despite my obsessive checking. The next layer of pain is muscle pain; the general ache that flares into a protesting groan when you move anything, or roll over, or lay in one position too long, or have any sort of pressure anywhere on your body. The top layer is joint pain; the sharp, throbbing whine of the hip sockets, the lower-pitched but just as insistent flames that consume the knees, the delicate ripples of spasming electricity that lace their way through wrists, fingers, and ankles... and then there's the booming resonance that blasts its way through mid-back, all the way through to the solar plexus on the other side and wrapping around the ribs, reaching both upward and down in an attempt to consume the entire torso... And did I mention the chills? Freezing, yet sweating at the same time. I couldn't get warm, but I could barely stand to be wrapped up.

I know that everyone's personal pain tolerance is at different levels. For someone else, this may be totally bearable. For me, however, it was totally incapacitating. I have two pain scales-- one for uncommon events, such as car crashes and broken limbs and such, and another for every-day pain. On my "every day" pain scale, I was at about a 5.5 - 6.5 on my traveling day, then it went up to 7 - 8 the next day, and today was a solid 9 most of the day. I can't say 10, because the pain I was in after the colonoscopy had me literally sobbing and helpless, but it was definitely up there, especially with the multi-facted nature of the discomfort. You can see now why I was hounding my doctor's office and the pharmacy today. I think that if I had no prospect of relief, I would have just sucked it up and tried to find methods to cope... but knowing that there is something that can scale the pain back, well... It nearly drove me insane. I was so frustrated. But now that I've got some of that in my system, I'm back down to a 4-ish. That I can deal with. Anything 5 or below, I can pretty much function normally. Once you get above that, it's hard for me to concentrate on daily life or make myself carry on.

So I basically just laid in bed the past two days, except to go grocery shopping and go to school (with errands in between my classes). Now, though, I'm starting to feel like a human again! I have emotions! I have a whole range of facial expressions! I'm still limping, but I can move faster than a gimpy snail!

It is frustrating to realize that I've gone downhill so far... I had a couple of people bring it up to me while I was up north, and I was forced to face the reality of how far I've fallen, so to speak. It was discouraging, to be quite honest. But really? I'm trying my absolute best to be as healthy as I can and to take the measures necessary to boost my health back up. What else can I do? If I never get any better, it won't be for lack of trying, that's for sure!

I've noticed a pattern. It's not like I've just had this gradual slide down a hill, it's more like a set of stairs. I'll level out for a while, then something will drop me down, then I'll level out, then I'll drop again...

But C and I have talked about how to try to get me boosted back up, and he instituted the "one thing a day" rule the other day. For now, I am allowed to do one "thing" a day. Whether it's cleaning the kitchen or unpacking my suitcases or running errands, I must choose. I only get one. (I really only have the spoons for one.) As I get better, I can add things one at a time, but for now I get one. This is where the "Fiance" part of the title comes in. He is so good to me... not just in dealing with the baggage that I have from my past, but in dealing with this sickness. He helps me to see things logically and smoothly, rather than getting worked up (or worn down) by emotions. He also takes care of me in the physical sense, working with my food allergies, making sure I've taken my meds on time (because I sometimes forget), being considerate of my limitations... just generally being awesome and not minding all my setbacks. He is the one that bought me the Bling Chariot, after all, which is one of the best investments I've seen in a while. I use that thing all the time (sad to say).

That brings me to the Fears section. Sometimes I feel like I'm never gonna get any better, like I'm just going to keep taking those stairs downward until I'm a quivering heap under the bedclothes. Then I work myself back into encouragement through various means, but... the fear is still there, in the back of my head. Today before class I was chatting with a lady whose sister has fibro. It manifested when she was 20 as a result of a back injury sustained at work, and 15 years of fighting later, she's basically bedridden, in extreme pain. Again, it's not for lack of trying that she ended up this way... and that scares me. Because, really, it's like no matter how hard I try I'm just not gaining any headway against this monster that's taken over my life. It's so dumb! I'm so sick of being sick! I don't want to be a frail wreck, but if I step back and take a look at the reality of my situation... I am kinda frail. I am physically weak in many ways. I don't say this to admit defeat, but for the sake of a reality check. While it's important to be positive and to set good intentions and all that, it doesn't help anyone to live in denial and refuse to see the truth of the matter.

So, okay. Yeah. I am sick. Very sick, in fact. And it doesn't seem like my efforts are preventing the downward slippage much, if at all.

But C and I talked about what would happen if I did end up bedridden like my friend's sister. What would happen if I just kept spiraling downward?

Well... if it happens, it happens. Obviously, there isn't much we can do about it, so why worry?

That was C's response. I mean, I'm doing all I can, sooooo... if it happens, then it happens.

He doesn't believe in worrying about things you have no control over.

And you know what? I'm coming around to his point of view.

As things stand now, I'm a sick girl. Pretty darn sick, in fact. But, but, but, I am also a fighter, and I'm going to do my damndest to get better again. If it doesn't happen, then I'll have to deal with that. But again, it sure won't be for lack of trying! I really can't predict the future... but I know beyond a shadow of a doubt that I have a heck of a lot of wonderful people in my corner, cheering me on and praying me forward, and I also have a pretty amazing guy holding my hand and wiping my brow (and tears!) as I fight this battle for my future and my sanity.

As I said, while this can be seen as a downer, I see it as... I dunno. Something else. Reality, maybe? Dashed with a little spicy optimism? I believe in God, and I believe in miracles. I don't know if he'll give me one, but I do think that there are a lot of things we can consider miracles, if we just look at them in the right light. This healthy relationship, for one... that, to me, is a miracle. My amazingly supportive friends and family. A painkiller that helps me feel like a real person again. A job that I love and a boss that totally understands my health struggles and works with me. A dad willing to foot my medical bills so I can figure all this out and move forward. (And he's also the one paying for my prescriptions, which includes the miracle pain killer. You're my savior, if indirectly, R!)

My life is filled with good things. Sure, it's filled with challenges, but whose life isn't? Maybe mine are just different from someone else's.

I choose to view this framed in positivity, even if I do get frustrated sometimes, or worn down and worn out from the pain. Yeah, I do want to give up more frequently than I'd like to admit. But really? I know it's all gonna be okay, one way or another. Really, it will.

(Now please, remind me of this mindset the next time I'm flipping out, yeah?)
Yeah, so after some runaround, I finally found out that the pharmacy had been faxing my pain med refill request to the wrong number. I got that straightened out, and proceeded to wait... and wait... and wait... all the while writhing. I could go on and describe how it all felt, but I'll save that for later. ;) (I'm fading fast.)

Anyway, after hounding both the doctor's office and the pharmacy equally all day, I finally got The Precious... after both classes. Boo. I had been hoping to dope myself up before that.

Yoga was good, as always. I had a "release" right in the middle of class, and had to leave to go sob. It wasn't one of those draining cries, though; it was very healing and relieving. I think that doing yoga and working my body in such a holistic way made it possible for me to relieve some of the grief and emotions that I'd been holding back from the trip to see D and from all the wedding guest disappointment. (Yeah, see that J? I spelled it right! ^_^)

I ran a bunch of errands in the gap between classes, and by the time class began I was so ready to go home and dive into a hot tub. I wish we had a hot tub... but I digress. I managed to stay the whole two hours, but I can safely say that those were the longest two hours I can recall in recent history. They felt at least 3 hours long each, minimum. I was in so much pain and discomfort, and my brain was soooo foggy, it's a wonder I was able to absorb anything at all!

But if this overwhelming pain and sickness is teaching me one thing it's that I'm tough as nails, baby! I may be whimpering to myself, but I'm still here, and I'm still doing what I gotta do.

Anyway, I finally got my meds, although it took a lot of self-control to keep from overdosing! I came home and jumped in a hot bath with a cup of hot herbal tea, because I've had chills all day and can't seem to get warm. Now I've got the house's heater running, I'm buried beneath my comforter and sheets, and I've got a lavender-rice heat wrap under my knees... and I'm starting to drift off a little. The pain is finally dulling, moving from sheer unmitigated misery to tolerable discomfort and mild torment, and I think I can get some sleep before C comes home. A rest, at least.

I'll chronicle my adventures as a Warrior later. For now? I'm enjoying my hard-earned reprieve from agony.
My boss gave me the week off, which I'm grateful for. I feel, oh, what's the word... abysmal?

Yeah, that's about right.

Everything aches, and I'm out of pain meds. The prescription is being filled, but ohhhhhh... I need them nowwwww!

Okay, done whining.

C encouraged me last night not to be discouraged. I'm just in a down slump with my health right now, and I'll figure things out and start climbing again. I'm just freaking out because I was doing so good and now I'm not, and the contrast is startling. But, I'll get back to "good" again.

He's right. I love how he encourages me and supports me, yet listens and affirms what I'm feeling.

It's so good to be home, back with my soul's mate.

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Later that day....

C: "How you feelin', lady?"

Me: "I feel a little better after napping with you, but... well, you know Clifford the Big Red Dog? It feels like he stepped on me, rolled around on me for a while, ate me, then shat me out the other end."

C: "...It's interesting that you would use a children's cartoon as your analogy."

Me: "Well, I was going to use a train, but trains don't eat people."

Did I mention that I seriously love this man? We have crazy conversations like that all the time.

We got a list from our realtor of houses that fit our criteria yesterday morning, and sent her back the three houses we wanted to look at last night. This morning she called me to let me know that all three have accepted offers and are under contract! I mean, I'm happy for the people that got 'em, but really?

Well, just after C left for work, I got another listing in my inbox, so I called him up and then called the realtor, and we'll check it out tomorrow morning. C has been loosening his standards on his criteria for a house, coming to grips with the reality that the first house we buy probably won't be the one we live in forever. It just needs to be good enough to serve our needs for the better part of a decade or so. *Optimistic*

I'm not leaving bed today, I don't think. I had a mental pity party earlier, then kicked that to the curb. Now I'm just accepting what is, taking it day by day...

I just received a phone call from one of the other ladies that works with HJ, and she wants me to come in and talk to her class of troubled teens. I'm totally honored! I don't think I'm going to tell my story from the tack of being abused exclusively, though I know for a fact that a couple of the kids were molested, but I will be bringing it up. I think I'll just tell about my life and how I was a troubled teen of sorts, and how I understand that this kind of stuff they're going through and doing doesn't come from a vacuum. It had to start somewhere, and I bet it's a crappy home life. Anyway, I'll talk about the lessons I've learned about overcoming the handicaps that I received from my bad home life--- boundaries, healthy relationships, forgiving and accepting yourself, etc. The teacher said that they're totally open and they receive what she says, so hopefully I'll be able to encourage some of these kids and help get their feet set on a better path, you know?

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Later that day....

I decided to attempt to do something today.

The shower liner has gotten progressively slimier, which totally grosses me out.  I just have never had the gumption or the energy to do anything about it, because it would involve taking it down, laying it out somewhere (where do I have the floor space for that?!), wiping it down and letting it dry, and then hanging it back up again. That's a lot of work for one little chore.

Today, though,  I'm just irked and irritated by anything messy (which is a shame, because I'm helpless to do anything about it right now-- actually, that's probably why it's so irritating!), and while I hunkered under the deluge of hot water in the shower, I made up my mind that I would deal with the slimy liner no more! After drying off and dressing, I took down the liner and old curtain and replaced it with a new curtain I scored for super-cheap recently (because of some flaws with the printing of the design). I laid the old curtain and liner outside on a chair to dry while I wiped down the mirrors and countertop of the bathroom. By this time, I knew I was done.

However, I decided to check if the guys had thrown out the trash bag I left outside the front door. There was some meat spoiling in the fridge, and I didn't have the strength or energy to take it out to the dumpster myself, so I figured if I left it by the front door someone would see it and take it out, right?

Wrong.

It was still there, but the bag now sported holes where some critter had gotten a free meal on us, and there were rib bones and spoiled meat juices spread all over the walkway in front of our door. Gross. Seriously gross.

So I had to deal with that, and then I pretty much collapsed into bed, whimpering to myself because I felt so terrible.

You know how when you're sick, really sick, you want your mommy? Or anyone, really? You just want someone to come take care of you because it's almost too much of an effort to take care of yourself. That's where I was. The reality that most of the people I care about deeply that would take care of me are too far away to do so (or at work, in C's case) sank in, and I just started to cry.

Why am I so sick? I don't want to feel like this anymore, God! What am I doing wrong?? I mean, I'm doing my best, but I just seem to be getting worse and worse and it's like there's nothing I can do to stop it! What am I doing wrong? Why can't I get better? I don't even have a specific "enemy" to fight! This is all so vague... Why am I so siiiiick, God?!

And so forth.

So I texted J, and she called me, and... it was good. The conversation didn't last long, but she let me cry, and she abruptly cut off my apologies for calling her to cry, which was awesome :)

It lifted my mood so much, just knowing that I can reach out and there are people there that care about me, even if they can't be there physically to care for me when I'm feeling rotten. I also watched my "jam", the "Stronger" Cancer Music Video that always encourages me to keep going. It's funny how different phrases buoy me at different times; this time, it was, "What doesn't kill you makes you stronger/ Stand a little taller/ Doesn't mean I'm lonely when I'm alone..."

Just 'cause I'm alone here in my apartment doesn't mean that I'm truly alone, and that feels good.

(I actually thought about calling my dad, T, because he did say that if I ever needed anyone to talk to that I could call him... but then I thought that maybe it'd be better for our budding friendship if our second conversation ever didn't involve my sobbing and falling apart with discouragement over health problems. Yeah. Probably. lol)

So, to while away my day in bed, I've been browsing Etsy for jewelry. (Wedding rings, specifically... trying to see if I can find anything more breathtaking than the ring I found up north, and so far? Nothin. I've found some really neat things, though.)

I love jewelry. Necklaces, rings, earrings... bracelets are very cool, but I don't wear them. They kinda annoy me. But there's something about the sheen of silver and the cool depths of gemstones that just gets me. Maybe it's because I love beautiful things, I dunno. One good thing about my forfeiting the SDA church, though, is that I no longer feel guilty for liking jewelry. I can window-shop to my heart's content :) (Because let's be honest... there's no way I can afford the stuff I see on Etsy, and we all know how guilty I feel when I spend money on non-essentials.)
I'm burnt out.

Like a 4-day old piece of charred bread.

This past week contained so many emotions, I can't even begin to absorb them all, much less process them.

D's dying, seeing it face to face, saying goodbye, and realizing that I will never see him alive again.

So many people breaking the news of their absence at my wedding (including H, did I mention that one? My wedding coordinator/best friend? Yeah.).

Talking to my real dad for the first time.

Being so damn sick and helpless to do anything about it.

Travel, which is always a bitch, at least when you have fibro.

Firing my officiant and frantically scrambling for a new one.

And then? United lost my effing bag.

That makes two trips in a row, not to mention the stuff of mine they've broken in the past. I hate that airline, but it's the only one that takes me where I need to go. Ugh.

I'm done. I'm just... done.

The lost bag thing just pushed me over the frustration edge, and I'm angry. Angry about everything listed above, and then some. (Uh, not angry about talking to my dad, I'm  happy about that one. Everything else, though? Pissed. Ready to start punching walls kinda pissed.)

I can't wait for C to come home. I really need a good long cuddle, a nice cry, and some seriously steamy sex. No joke.