I shared my concerns with C last night. He told me not to worry about money. That is his job. lol.

We did talk it out, though, and he assured me that we are not going to lose the house. The worst thing that will happen is that the hospital bills go to a collection agency and we continue to pay off what we owe. Oh. Well, that's not that scary... And he's not worried about my costing him so much money. We'll figure it out, and it'll be okay. We'll be okay.

Also, he has been talking to guys at work about phone plans, and he has found some other options that are much less expensive than the numbers the Verizon guy was throwing at us. That is relieving. We'll probably end up going one of those routes.

As J said, I'm glad he takes such good care of me.
I'm scared.

I spoke with the hospital today to set up a payment plan to pay off my debts with them, but they can only give us 6 months out to pay it off, so that makes the monthly payment over one hundred dollars. It's going to be even more after I go in for the EEG and MRI next week... it almost makes me not want to go. Really.

C keeps saying we'll be okay, and that we're going to make it. I know he's right, but I'm still... scared. I don't know how we're going to do this. We're already stretched so tight just covering basic expenses. How are we going to pull this off?

It's times like this when the thought of slipping quietly into death is so very appealing, times when uncertainty and fear are overwhelming and when it has been a long day (or days) full of grueling pain. I begin to wonder... is it worth it?

I love my life, and I love my husband, so very much, but... it feels like he'd be better off without me around.

I'll be telling him all this (probably amidst tears) when he gets home, and he'll reassure me and work out the numbers and we'll be okay, but right now... right now I'm hurting so much, and I'm scared that we're going to go belly up and maybe lose our house or something. At least we have several months before C has to start paying more for health insurance.

What are we gonna do?
I've got a new hobby-- putting together outfits for touch and pressure sensitive women. Polyvore lets you create outfits and collections, so I've created a line of fashion for fibromites. It's actually quite fun! Like a treasure hunt and shopping, all rolled into one, and without spending any money. I really enjoy it. (Like paper dolls without the dolls.)

#FibroFashion
Yesterday was the Women's Empowerment Conference that the HJ hosted. We had a lot of help to make it a reality in the first place. For instance, a law firm sponsored us and gave us the money to hire caterers to provide a free continental breakfast and a lunch to all of the women and vendors present. That's nothing to sneeze at, for the total head count was somewhere around 100, way beyond my expectations! I helped to run the registration table by the front door, then I sat at the HJ's booth. There were lots of flyers and information on our table, as well as those silicon bracelets that everyone likes so much, and there was also one of those informational tri-fold cardboard things, but it was very hastily put together for this event. E gratefully accepted my inquiry of making another one for us. I know I can do a great job, and it's important that our information be displayed attractively. Presentation is a large part in what draws people in. (That's why it bothered me so much that some of the books we had to sell in the summer programs were clearly outdated and very unappealing. It made them much harder to sell, and even believing what was in the books already I had a hard time reading them and taking them seriously.)

I didn't stay for the whole day, leaving after the keynote/lunch speaker, but I enjoyed what I was there for. I was there for the majority of the day, and it wiped me out! I did get a free chair massage from the massage therapist who was there, which helped my back pain for a little while. I was definitely glad I had brought my stick and a large quantity of pain killers, though. I can't wait to debrief about the conference on Tuesday at our HJ meeting. I am certain that it will be an event that will continue for many years. I'm so happy that we're becoming a presence in our community with annual events! There's the talent show, for one, and now this Conference. I love being a part of something that makes a difference in people's lives. I really do. I feel very fortunate that I have both the opportunity and the skill set to be a valuable part of the HJ.

I was very tired afterward, though. I came home and napped, then C and I went out to run errands, but I was in bed and asleep before ten last night. We went to the Verizon store and priced phone plans for when I switch over to his plan. It is so expensive! C and I went through the budget item by item yesterday, and I'm discouraged, frankly. I mean, I know we'll be okay, but... I feel guilty for being such an expense to him. It's not like he didn't know it when he married me, but I wish that I had ways to ease his financial burden. If I could work, that would be one thing, but not only am I not able to really work, I bring medical bills and expensive food bills on top of all that! If I could live on rice and beans I would, but I cannot digest beans (or most proteins, really) well and it causes me more problems. After taking out all of the necessities like bills, we have just above a hundred dollars to buy gas and anything else we need. I told him that I will buy my own gas, and not to worry about it. I can manage that much with my paycheck. I'm still trying to pay down my credit card, but it's a very slow process. E and I were talking about increasing my hours this summer, and I'd like to, if just for the sake of finances. (More than that, though, I savor the feeling of making a valuable, viable contribution to something other than myself.)

I was racking my brain, trying to figure out where I can cut expenses to help, but I can't come up with anything. Even when it comes to food, as expensive as it is, I buy only the basics. Fruit, veggies, sometimes chicken, cheese, or fish, rice from time to time, yogurt (though I'm cutting that out for other reasons), rice milk and cereal, oatmeal, applesauce... That's it. My big splurges come in the form of, "Omg, can I have raspberries this week?!" And I know that C's not upset with me for any of this, but I almost expect him to be. Weird, huh? I know where it comes from, at least partially, though, and C's called it on more than one occasion. When I'm fretting about costing him money, he says, "I'm not R, and you're not your mom." It's true. R gets very worked up about spending money, and Mom is not good at not spending it. I do not nonchalantly spend money on things that are not necessities, though from time to time I feel an insatiable urge to spend money on myself in a way that is not necessity-related, like buying a dress from Goodwill or a new bottle of nail polish or a new piece of jewelry from WalMart or Etsy or something. I do, but it always comes out of my own money, what little that is, and I invariably feel the pressure afterwards that I could have spent it on something more productive... but the pleasure in my purchase overcomes the guilt. Usually.

It blew me away the first time C made that comment about R and mom, but I immediately saw the truth of it. And you know what? I'm actually glad they're getting divorced. They have put much work into their relationship and into the family, but it's still very dysfunctional, and it's better for everyone involved if they go their separate ways. I think everyone will be happier eventually, even if they aren't at first. The kids are going to have to get used to living within much tighter means, and while it may be difficult for them it will be a valuable lesson. R is a good person, as evidenced by the fact that he's buying the family a place to live and will be giving them money for a pre-determined period of time. That blows me away. I mean, when you're divorcing someone... usually you don't volunteer to give them money after you're split up. I never had any doubts about him being a good man, but he needs to get his PTSD under control. He's also very moody, which I could never handle. One of the things that draws me to C so much is his stability in nearly every area. R is stable financially, to be sure, but his moods are so subject to change... I always checked with mom to see what kind of mood he was in before I called to talk about money with him. Mom has her own mood swings, but maybe I'm more used to those since I grew up with them. I don't know how to explain her, exactly... I mean, she's generally always upbeat, in the same way that people say I'm always happy, but she can go "manic" and be swept away in some idea of hers on a moment's notice. A trip to the store is never just a trip to the store. You may end up 3 other places before you finally make it there, which always wore me out and made me impatient. (Realizing now that it was probably my lower-than-normal energy levels contributing to that without my realizing it-- not enough spoons!) I mean, I love adventure as much as the next person, but I just want to get my errands done and then decide if I feel up to anything else. I suppose that's the fibro talking. I do cherish the memories of her coming home from work and announcing that we were going to San Diego that weekend. I dunno. I'm ambivalent about it.

There's so much more to the situation, but I'm pretty much just staying out of it. They're adults. They need to work it out on their own. There's a situation that Mom is involved in that I am uncomfortable with and disagree with, but I've made my feelings known and now I just have to let it go. I still love her to pieces, but I'm not her caretaker. It is strange for me to keep my hands off emotionally, but it's taken a lot of work for me to be healthy enough to do that. She's my mother, not the other way around, and though I spent much of my life trying to take care of her... that's not my job. It's not my place. So she knows how I feel and why, and I'm letting it drop. She needs to work things out on her own. (I do kinda feel like a parent watching their child make mistakes, though... it's hard.)

I am sad about not being able to visit for Christmas this year, but Mom has said something about her possibly being able to visit me sometime this year or next, so that's very exciting. I would love to have her here. I told her that she'll be so proud of me when she sees my little house and the life C and I have built, but she said that she's already so very proud of me. Warm fuzzies!

I was telling C about our conversation, and how Mom used to be afraid that being with him would hold me back, "live a small life", because she has always felt that I'm destined for great things. Now, as we're discussing the stability and love that C has brought into my life, we both agree that he's the solid foundation that has and will allow me to grow into my full potential. The analogy was that he's the soil that will let me bloom. When I told C that, we started this joke about how he's dirt to me and how that would sound if we said it around others. So now, as a term of endearment, I shout at him, "You're dirt to me!" It's pretty funny :)
Things that made me smile today:

- Heavy rain in the morning

- Watching S play with the dog I'm sitting

-Rubbing C's back and scratching his head while he plays Guild Wars

-Watching C's animated description of the greatsword he wants, and the capabilities it possesses

-Text message from D thanking me for her thank you card and informing me that our picture will be framed and put on display in the living room

-Having all of my wedding thank you cards sent out

-Walking into our bedroom and smelling our peculiar "Cassandra and C" scent

-Cloudy day

-Kira (the dog) sneezing

-Facebook interactions with friends

-Talking with my mom on the phone (for an hour!)

-C's agreement to a tentative "visiting Id" plan

-Having pain killers to take

-M's hijacking my hospital trip

-Being able to wear my collar necklace today

-Sitting on a toilet brush (smiling at my stupidity, after I screamed and then laughed)

-Knowing that my husband will be home soon
Yesterday was a tough day. While life as a whole is good, some days are just rough, you know? It was one of those.

First of all, I was not able to sleep the night before. I don't know why. Sometimes my fibro likes to kick things up a notch and throw some unexpected surprises at me, and this was one of those little gifts. I did manage to get a few hours of dozing in, all put together. Maybe two or possibly three? (When you consider that I was in bed for, like, 9 hours though...) It was nice to snuggle with C, though. He was sleeping rather restlessly, continually pulling me into his embrace while he slept. I liked it, except for the hot flashes I have been going through which cause me to sweat profusely, and the fact that C is a furnace, especially when he sleeps. I was roasting, but content.

I finally pried myself out of bed and got ready for my appointment with the pain management specialist. I didn't realize until later how much hope I had laid up for this appointment, but I was really anticipating something special. I arrived 15 minutes early, because I knew I'd have forms to fill out as a new patient. I filled out the forms, and waited... and waited... for 2 hours. Not impressed. However, I have to give them some grace, as one of their doctors was in the hospital seriously ill, so they were scrambling to cover their bases. Fortunately, they had comfortable couches.

I finally got into the room where the doctor would see me, and waited some more. He came in just after I finished stretching, since I had time to kill. About 5 or 6 minutes after he came in, he was gone and we were through. I was holding back tears, but they began to fall while I sat on the comfortable couch again, waiting for my prescription. A young man sitting near me saw me crying and asked, "Are you okay, m'am?" I nodded and smiled at him through my tears, though they continued to fall. He looked at me again and said, "You're too beautiful to be crying." I smiled again, and then he asked me, "Is it the pain?" I nodded and said, "Yeah, but... they said there's nothing they can do to help me." He looked crushed and sympathetic and expressed his condolences. We struck up a conversation, which helped me to get my mind off of my bitter disappointment and hopelessness, but when he was called back to the patient's room and I was called up to the desk for my prescription, the tears built up again, and I cried all the way to work.

I had hopes that a doctor who specializes in helping people to manage their pain could help me somehow, but he said that since it's fibromyalgia, there's nothing he can do. He instructed me to get 30 minutes of aerobic exercise a day, so that my natural endorphins could do the pain-fighting work for me. I mentioned that movement and exertion made my pain worse and made me sick, but he didn't pursue the lead. I was too crushed to really stand up for myself, but I did point out that, in lieu of standard aerobic exercise, I have sex a lot. The look on his face as he struggled to recover his composure was quite humorous to me. He didn't know how to respond to that at all.

When I was telling C about my encounter, he struck up a hypothetical conversation with the doctor in which he pointed out (in a rather upset tone) that he/I "can't do 30 minutes of aerobic exercise a day. I can't run. I can't even jog. I have to use a walking aide just to get around. Doing housework exhausts me and makes me sick sometimes. I would lay down, but even that hurts!" It was sweet to see him take up on my behalf. I almost wish that he were there with me so he could have stood up to that doctor. As it was, I was dazed and dizzy from lack of sleep, then crushed with the hopelessness of the statement that there was nothing they could do for me.

I told him my problems. I said, "I'm here because you guys know how to deal with pain. I'm in a lot of pain, and it's ruining my life. I'm pretty much bedridden all of the time. Help me."

"I can't help you."

I felt my world caving in. It was like I was looking down a dark tunnel at the rest of my life, and all I could see was crippling, gnawing pain. It felt like a death sentence, like my pain was only going to keep getting worse and worse and there's nothing anyone can do about it. That's why I cried. Because I don't want to live this way, but this man was pronouncing this unliftable curse upon me, throwing useless advice in my face and walking away. This man that was supposed to help me... refused. Said he couldn't.

At least he gave me pain killers.

As I cried in my car, though, I caught sight of the ring that I bought recently, my Warrior/Survivor ring.

On one side, it says "Warrior" in purple, and on the other it says "Survivor" in black.

I looked at the word "Warrior" that was facing me, and I felt my resolve harden. Warriors are named as such because they go through difficulties. There is no such thing as a warrior that has not gone through at least one battle. I am not a Warrior because my life is easy; I am a Warrior because I face and overcome difficulties. This is another battle for me to fight. I will do this. Not so much that "I can do this", but I will do this. I will continue to live my life, even if jerkface doctor man won't help me.

When I got to work, I shared my experience with E, and she held me while I keened my grief and disappointment. I love how she is totally empathetic, because she has RA and deals with large amounts of (literally) crippling pain on a daily basis. We fight the same fight. And we ran into the same jerkface doctor on our journey. He made her cry, too, when she saw him. He said something about the pain being her fault because she's obese and she needs to get up and lose some weight. I would say that something is lacking in this guy's bedside manner.

She encouraged me, though, and shored up the resolve that had already begun to grow in me on my drive there.

I am fighting... one day at a time. One situation at a time.

The rest of the day was... nice. I guess. I made it home and collapsed into bed for a couple hours worth of dozing. When C got home, we went for a long walk and talked about stuff. E had wanted to send us to Julian, my magical mountain retreat, during the time C had gotten off for J's wedding, and I was SO excited and looking forward to it! (Note to self: stop looking forward to things.) Well, we can't manage the gas money for that, either, even though it's only 2.5 hours there. Alas... So I came up with an ingenious idea, which is to go camping here locally for a day or two. We can go out to our special camping place where he proposed the first time (and where some other incidents of great importance happened) and have some time together in the wilderness. (Sorta.) And, fortuitously enough, there is supposed to be a fantastic meteor shower on the days that I had thought we might go out camping! So I'm not going to say that I'm looking forward to it, but it would be a nice thing to have happen.

When we got back from our walk, C prepared and assembled the ingredients for a yummy crockpot stew, which has been simmering all day today and filling our house with delicious smells. It's making me huuuuuungry! Today, I got my MRI and EEG scheduled for about 2 weeks from now, just a few days after my electrical nerve testing. M was willing to come sit with me when I asked him, but a phone call to the hospital confirmed my suspicions that he wouldn't be allowed to come into the MRI room with me, and since it could take an hour or more (unsure on the timing--some sources say 15 to 90 minutes, some say 1 to 2 hours) I would hate to have him just hanging around, waiting for me. That seems rude, especially since he'd have to get the day off of work to take me. I really wish C would/could go with me, but it's not going to happen. I have to be there by 6:30 a.m. for the EEG, and they want me sleep deprived for some reason. The MRI isn't scheduled until 9, and I have no idea when I'll be getting out. C will be needing that time to sleep, because he works that day, so I didn't expect him to be coming with me. In fact, he laughed when I mentioned the possibility, and told me "Yeah, right!" Just as I expected. lol. 

I'm going to have to plan a few things in advance, such as making sure that I have food with me, and pain killers (if I'm allowed to take them-- laying still on hospital beds for that long will take its toll on me, not to mention the sleep deprivation!). I'll also need warm socks and a light sweater or blanket. Hospitals are always freezing. I don't think I'll need to be in a hospital gown, though, since everything has to do with my head and I won't be wearing any metal. I'm not even allowed to wear makeup! (Which is fine... I don't wear it anyway at all, hardly.) I suppose that's because some products have trace amounts of metal in them, which would disturb the magnets in the MRI.

I'm looking forward to potentially getting some answers, though my expectation is that the tests will all come back "normal" and no one will have any idea what's wrong with me. I suppose that's better than MS. I had to explain what that was to C last night, and he looked pretty grim about the possibility. Yeah... we're just gonna assume that I don't have it. That's the best route.
I saw the neurologist today. While he is more skeptical of fibromyalgia than I'd like (it has no objective test to prove its presence in a person), he seems to know what he's talking about when it comes to other things. In addition, he's friendly and laughs easily, so I will stick with him, at least for now.

When I told him about the twitchies, he immediately began asking questions. He feels that many of the things wrong with me are puzzle pieces, including the fibromyalgia. Indeed, there are several diseases that fibromyalgia mimics the symptoms of, so in reality I could not have fibro at all, but some other disease. Isn't that interesting? So I'll be getting an MRI, an EEG, and some electrical testing in the next few weeks, to see what's going on with my nervous system. Honestly, there are several suspects that we are trying to see if we can rule out, and MS is one of them. Many of the symptoms of MS are the same as fibro, and the twitchies are definitely of a neurological origin, so it's a suspect until we rule it out. Lupus is another. Basically, we're looking at autoimmune causes it seems, although he agrees with me that the big accident back in '06 may actually have something to do with my nervous system dysfunctions.

Other than that, life's been pretty calm. I've had a few more instances of grieving D, but I know it's normal and healthy, so I just go with it and cry it out. C will often hold me while I cry, which is nice.

Have I mentioned lately that I love being married? The more time passes, the more love I am filled with for C, and the more gratitude wells up and overwhelms me. I am so grateful that I chose this path for my life. I am filled with more satisfaction and happiness than I have ever had in my life. My time in Id was very fulfilling, and comes a close second, but the work I was doing to heal from my past adds an element of discord and instability that is lacking in my current life. I have stability, for the first time in my life. Real, honest to goodness stability. I have C to thank for that. He is a Mr. Steady, that's for sure, and he works so hard to make sure that all of our ends meet. I know I can trust him and rely on him to care for me... and our children, eventually. I love that man, more than I thought I was capable of, and it's clear that he loves me as well. Life is good. Loving and being loved, despite whatever financial difficulties we are having... everything else pales in comparison. I am basking in the glow of knowing that I have my own little home, a place that will always be here for me. That doesn't mean that I don't still get restless and have the urge to go on an adventure, but the adventure is sweeter knowing that home is waiting. A real home. My home.

I see the pain specialist tomorrow, and I hope that he can help me. The patch took a few days for the medicine to build up in my system, and it's helping a little, but I'm still quite reliant on painkillers. I feel less shame about using them now, less guilt for taking them. I don't really understand why I feel as though I need to prove myself by enduring large amounts of pain, but I'm realizing that it's pretty silly. If I'm hurting and have the means to lower that pain, why shouldn't I? I would want anyone else to do the same. I do tend to treat myself much more harshly (and abusively) than I would ever treat someone else, but I'm working on overcoming that. I'm still learning how to be kind to myself. It's a long process, but one that is proving worthwhile. I think it's contributing to my satisfaction and joy in life. C is wonderful, but he is not and cannot be my everything. It would be unhealthy for me to expect that. I need to find my own joy and satisfaction outside of him and our relationship, although he does bring me much joy and satisfaction. That's why I'm grateful that I can still work some. It does a lot for my spirit to know that not only am I still somewhat self-reliant, but I am helping others. It's been hard, this loss of independence and control over my life... but I still have some measures of self-reliance left, and I cling to them.

Now I'm just rambling. I ran out of the effective painkillers my rheumatologist gave me to tide me over, so I had to take a large dose of two other painkillers that I still have. It worked, and I feel very relaxed and happy, which I love. I can see how easy it would be to become a prescription pain killer abuser, but that is something that I do not want. That contributes partially to my guilt over pain meds. I'm afraid that by enjoying the relief from pain and the mild euphoria that the drugs sometimes bring, I am choosing the path of the drug abuser. I know that's not the case, but enjoying the effects of the pain killers frightens me in a way. The weather has been forcing me to take more pain killers than I would normally (the barometric pressure is all over the place!), but I have other, more active ways to relieve the pain as well. C claims that I'm going to kill him with wanting sex so much, but it's just a natural part of who I am. I think he secretly enjoys the fact that I want him so much. In fact, I know he does. He pretends to hold out because he likes to watch me try to convince him to "give me a dose of painkillers". I found that little tidbit out last night, and I pretended offense, but I find it just as fun as he does to try to convince him, so the game will go on.

Summary: getting the medical help I need, despite our financial hardships. (Payment plans FTW!) Life is good. I love my husband, and I love being married. Took some meds, I feel good, and I borrowed some books from the library so I've been reading like crazy lately. I've been more fatigued than usual, so it's a good past-time.
Still dealing with IBS flare. It's not as bad as the last one though, no where near it.

C and I had a nice relaxing day together. I hung out in his man cave with him and watched him play Guild Wars while dinking around on my own laptop, then we hit up Home Depot for the materials to put a shelf up in our laundry closet. We got everything we need, so it's just a matter of assembling it all.

The pain patch, according to my research, takes a few days for the dosage to build up in the bloodstream, so I'll be seeing this week if it's effective or not. I am getting in to see a pain specialist next week, as well as a neurologist for the twitchies that are still in effect. I have a feeling that payment plans are going to be our best friend...

As shocking as it may sound, I haven't felt much like blogging lately. I'm just in a more lackadaisical mood, content to drift through my days and enjoy life. I don't know what brought it on or how long it will last, but I don't really care. I'm cool. (Maybe it's a stress response? I couldn't say.)

I wish I had some deep thought or interesting philosophical point to wrap this up with, but, uh... I've got nothin'. Just a rumbly in my tumbly that only the BRATY diet will satisfy.
It's an interesting thing, chronic illness and pain. It forces you to take care of yourself in ways that most people don't even have to consider. Yesterday, for instance, I noticed the beginnings of an IBS flare (and a brutal one, by all indications), confirmed by today's symptoms and pain levels and placement. So now I have to be really careful in food choice and hydration. I've got a soothing tea steeping right now, and I'll probably try to pick up some safe bread later on today. I've still got a few bucks left from my last paycheck.

It's funny, how far I've come in the whole "taking care of myself" thing. I'm glad I learned so much about being kind to myself and loving myself and that I dropped some of the self-hatred when I did. The pre-kindness me would have been thrilled at so many ways to inflict self-harm and pain.

It's still difficult, knowing how to take care of myself... dispelling the twisted conceptions that lurk within my psyche. I struggle with pain management, not because I like being in pain (unless I'm going through a particularly dark time) but because I don't feel as if I'm ever in "enough" pain to warrant lessening it. I'm failing somehow, showing weakness and proving that I'm worthless or unworthy when I take a pain pill. There's always the thought that I could have endured more, for longer, and that I should have. Funny that I should have this mindset when everyone around me is prodding me to just take the damn painkiller already! I think I know where the seeds of this thought process come from, at least in part, but that doesn't make it any less potent or damaging. It's an evil little lie, one that I fight with on a daily basis. Multiple times. All the time.

I'm really grateful for the anti-depressant that my doctor put me on. It has helped to even out the ruts and valleys that I used to fall into so often. Just look at my blog entries! There are times when I'm down, to be sure, because of the pain or because I'm grieving or what have you, but the senseless spirals into darkness? Gone. I had already gone a long way toward alleviating them with the work I did with my last counselor, but this was the last puzzle piece, I think.

I have a friend, D, who is struggling with her past and the trauma it has inflicted on her. I hear myself when she writes to me... at least, where I used to be. It shows me how far I've truly come. I mean, I'm with myself every day, so it's more difficult to see a change, but man... it's gratifying to know that all that shit I had to wade through... there has been gain. I'm in a better place now, I really am. (And part of me is terrified to write that, because just when you think you're safe, BAM! Something happens to prove you wrong. I'm afraid that I'm going to get hit with a terrible wave of depression or that something awful is going to happen to someone I love.)

I can see that I still have work to do. But that's okay. Healing is a journey, and I know I'm not at the end of the road yet. That's why I keep going to group, keep reading books. I sure wish I could get back in with a counselor, though. That'd be nice... especially with all the crap I have to deal with with these damn illnesses. They've taught me a lot, though... and I guess I'm (grudgingly) grateful. Heh.

Titanium

I'm not dead, just lying low. I'm trying out a new type of pain reliever-- a sustained release patch. Aaaaaaand... not impressed. Either the dosage is too low, or this type of pain killer just doesn't jive with my body chemistry. It's been a very painful day.

C will be home soon. We'll watch the last episode of the first season of Farscape, and then I'll probably be calling it a night. I'm tired.




You shout it out,
But I can't hear a word you say
I'm talking loud not saying much
I'm criticized but all your bullets ricochet
You shoot me down, but I get up

[Chorus:]
I'm bulletproof, nothing to lose
Fire away, fire away
Ricochet, you take your aim
Fire away, fire away
You shoot me down but I won't fall
I am titanium
You shoot me down but I won't fall
I am titanium

Cut me down
But it's you who'll have further to fall
Ghost town and haunted love
Raise your voice, sticks and stones may break my bones
I'm talking loud not saying much

[Chorus:]


Stone-hard, machine gun
Firing at the ones who run
Stone-hard as bulletproof glass


[Chorus:]
I'm in need of a little lift, a little laugh. I have a Pinterest board dedicated solely to chronic illness funnies, so I thought I'd look through them and pick out some favorites to share here. I feel better already...



While we were at the mechanic's, paying C's bill, we ended up in a conversation with the owner and his son. The owner is friends with C's dad, R, and he was remarking on how much C is like R. I totally agree, but I don't mind because R is good people and I like him. (The main character of Farscape reminds me so much of R!) When the owner asked what I did for a living, I had to explain about the fibro, and I got the typical, "You look perfectly healthy" response. C was explaining how I don't know from day to day how I'll be, and there are some days that I can't even make it out of bed. The owner understood because his wife has chronic back pain problems and sometimes can't make it out of bed either.

It just struck me how "bad" it really is when I heard C explaining me. It didn't really occur to me that, yeah, there are days I'm stuck in bed, and that's not normal. But when I heard someone else say it, I realized that no, it's not normal. I've just gotten so used to my life... I realize how weird it is to try to figure out when to take a pain killer, because I'm literally always in pain, so it's a question of "can I handle this level, or do I need a pain killer to bring it back to a more bearable level?" Since I went off of my meds (can't afford the Savella, and we thought the gabapentin was what making me twitch, which wasn't the case apparently), I have been in excruciating amounts of pain. I thought it was bad before? No way. Being untreated for a week showed me how bad the fibro's gotten, with the help of its autoimmune buddies... and I'm so grateful that I'm back on the gaba. Every day is a little less pain.

Today, however, I'm quite weak and dizzy, and I have a baby migraine. It's not full-blown, but it's enough to be painful and annoying. It's almost easier to be a "warrior" when you're fighting intense pain, because it's something you can focus your anger and frustration on and kind of push off of it into greater heights of determination. When you're confined to the couch because you are falling over when you get up, though, it's harder to wrap your mind around that and use it to fuel your determination. At least, it is for me. Maybe because the pain is a constant, so I'm used to it. It's almost a tangible object to me. I have weapons: pain killers, stretching, yoga, deep breathing, sex, distractions by movies and such. With the weakness and dizziness... I don't have any weapons for that. I don't know how to cope with it any other way than by resting and riding it out. I can't get out of bed today.

But I need to realize that in resting and riding it out, that is my weapon. I am battling. I am warrior-ing while flat on my back. I'm still breathing, I'm still smiling, and I'm still happy with my life. I've won.

It would be easy to focus on and give into bitterness, because I'm too young for this. I hear it all the time... "You're too young for this." I know. I know. I'm only 25. I could let the unfairness fester... or I can take it in stride and realize that everyone has a battle to fight. Life is all about "warrior-ing" in our own particular ways. This is my fight, and I'll fight as well as I can. If I fight well, then I can enjoy the rest.

So, today... I am a warrior on my back, and I'm winning.




I'm just a little bit caught in the middle
Life is a maze and love is a riddle
I don't know where to go I can't do it alone I've tried
And I don't know why

Slow it down
Make it stop
Or else my heart is going to pop
'Cause it's too much
Yeah, it's a lot
To be something I'm not

I'm a fool
Out of love
'Cause I just can't get enough

I'm just a little bit caught in the middle
Life is a maze and love is a riddle
I don't know where to go I can't do it alone I've tried
And I don't know why

I'm just a little girl lost in the moment
I'm so scared but I don't show it
I can't figure it out
It's bringing me down I know
I've got to let it go
And just enjoy the show

The sun is hot
In the sky
Just like a giant spotlight
The people follow the sign
And synchronize in time
It's a joke
Nobody knows
They've got a ticket to that show
Yeah

I'm just a little bit caught in the middle
Life is a maze and love is a riddle
I dont know where to go I can't do it alone I've tried
And I don't know why

I'm just a little girl lost in the moment
I'm so scared but I don't show it
I can't figure it out
It's bringing me down I know
I've got to let it go
And just enjoy the show

Just enjoy the show

I'm just a little bit caught in the middle
Life is a maze and love is a riddle
I dont know where to go I can't do it alone I've tried
And I don't know why

I'm just a little girl lost in the moment
I'm so scared but I don't show it
I can't figure it out
It's bringing me down I know
I've got to let it go
And just enjoy the show

dum de dum
dudum de dum

Just enjoy the show

dum de dum
dudum de dum

Just enjoy the show

I want my money back
I want my money back
I want my money back
Just enjoy the show

I want my money back
I want my money back
I want my money back
Just enjoy the show
C has had the past two days off, which has been nice. He's been working so much overtime lately, and I've been so drugged off and on, it seems like we've hardly gotten to see one another. Of course, we have our routine that works quite well, but getting to spend two whole days together was a real treat. On Friday, we ran errands. C's paycheck had finally hit the bank, so we paid off some of the bill from when his truck broke down, and then we bought groceries. It was a good thing he got paid when he did, because both of us were down to almost nothing in food, despite getting creative.

We took my car, since his truck didn't have gas yet and mine did. My car, Shenandoah, is also the only vehicle with a cd player or radio, but a song came on the radio that I HATE, so C suggested I put in a cd. I put in Queen's greatest hits, and as we drove along C was singing along with it, so I joined him. I swear, it was just like a movie or something. A young couple in love and having fun, driving along in the bright sunshine, singing with the radio to their favorite songs, enjoying one another and the day... it was truly, truly fun. It fed the part of my soul that thrives on spontaneity and joy.

Funny story that highlights my fibro fog... I took my walker with me into the store, as I've been in extreme pain of late. (But since I got back on the gabapentin, every day it's a little less, which is something to be truly grateful for.) C let me take over pushing the cart somewhere in the store, and it wasn't until the end-ish of our excursion that I felt overwhelmed by pain and fatigue and wanted to sit down on my walker... only to realize that I'd left it somewhere. I left my walker somewhere in the store. Hah! I found it easily enough, but I'm glad that I realized I'd left it before we checked out and went home. :) It was sitting forlornly near the root vegetables. Poor Bling Chariot.

After getting home, we watched some of the sci-fi show that we've begun watching through together. It's called Farscape, and it's from the late 90's, early 2000's. Despite being about 13 years old, it's really good and it makes me think a lot. It's also really funny. I'm really enjoying watching through this one with C, even more than the last anime we went through together. This is kind of a hobby that bonds the two of us; a couple's activity. C will choose a show he thinks I'll like, one that I haven't seen before, and we'll watch the whole thing together. The only time we haven't finished one is when we were going through Bleach, and that's because I got bored because it seemed repetitive to me.

After a while, the guys came over for DnD, and I hung out and read/played on the computer until I was ready for bed.

The next day, Saturday, was a truly lazy day that I enjoyed. I've been waking up early, like 6'ish, and moving to the couch to play on the internet/read/do stuff until C wakes up and goes to work. After that, I'll accomplish larger housework tasks, because I'm not afraid of waking him up. At any rate, C came out and joined me on the couch... sorta. We engaged in marital privileges a bit vigorously, but I didn't realize how few spoons I had, so I ended up using all of them on that one activity. C put in Farscape, and we proceeded to watch a good portion of the first season. I'm talking hours worth of the show, here. We paused it for regular bathroom and food breaks, and somewhere in the mid-afternoon we got dressed and went to the store in search of sea salt. They were out, but we walked over to the pet store and considered fish for C's tank and looked at the other animals. Upon arriving home, we ended up napping on the couch for several hours. C hadn't slept the night before and the heat really drained me, so we slept a long time. When I woke up I read for a while, and C was playing an online MMO with some of our friends who were online at the time, but then he came back out and we watched more Farscape until I was sleepy, which was about 1 am. We only have 6 episodes left in the first season, and we watched the bulk of the others yesterday.

It was a nice, easy, lazy day, and I really enjoyed spending the time with C. Some people think that watching a show together doesn't count as spending time together, because you're focused on something else, but the show actually stimulated some very interesting philosophical and anthropological discussions while we were watching. Also, we cuddled a lot, despite my being quite twitchy.

There is one thing that I must mention, and it is this: when we left to go grocery shopping on Friday, there was a package waiting in front of the door. I hadn't ordered anything, but my name was on it, so I opened it. It wasn't a bomb, but instead it was an entire case of Cassandra-safe cookies!!! Some mysterious benefactor ordered an entire case of the one store-bought cookie that I can eat, and had it sent to my house. I flipped out in a big way (in a good way), as I love surprises, and this is like... the ultimate surprise. Also, I was raised by my mother, whose primary love language is gifts, so to receive such a thoughtful gift, and as a surprise no less, reaches into my heart and tweaks every "feels" wire that I've got. I was jumping up and down and shouting and really just haywire with excitement, and I'm still so happy about it. It's not about the cookies, though they're delicious (and I'm having a hard time exercising self control!), but it's about the thoughtfulness and intention behind the cookies. An entire case. Man. Can you believe it? I'm stoked. And no, the mysterious benefactor has not revealed themselves as of yet. C and I both kind of thought it was M, but it wasn't. It is something like he would do, but I must look elsewhere for my secret gift giver.

Anyway, back to the regular week and C's regular routine. He has more overtime coming up, so we'll only get one day together as a day off, but that's okay. He's working so hard to keep us afloat, and I make sure to let him know how much I appreciate that, and him. He seems to like that :)
My sweet husband... I love him so dearly.

He deals with so much when it comes to my health problems, because no one lives in a bubble. My problems affect him, even though his approach is to merely shrug and keep going. "I can't do anything, so... I'll just keep going on as normal." And it's good for me, because it keeps me from flipping out and on more of a grounded, level place than if I had someone flipping out right beside me, you know?

As he was climbing into bed this morning, I groggily awoke and felt him very gently try to place his arms around me so he wouldn't hurt me, because he knows I'm really sensitive to pressure right now. I couldn't help but cry out in pain the first time, because he accidentally bumped me, but he corrected himself and cuddled up behind me, warming me with his big, floppy self.

He's been talking money a lot lately, working out the figures in his head and talking them out with me. I like it because I know where we stand financially, and I can make decisions based off of that. Even though he's the one with all the money (I keep whatever money I earn, but we all know it's not much), I'm in the loop. He's not stressed about money, per se, but we're very tight and we both know it. It makes me love him even more, though, to see him working out the bills and how we can manage, because I just feel this overwhelming sense of being taken care of, which is thoroughly amazing to me. I mean, I can't really contribute much of anything to our budget, yet he still has me under his wing, taking care of me and loving me. Who does that?!

Yesterday he was talking bills, and mentioned that he needed to get gas because he was really low. I told him to just take my car since I was so very sick and not going to be going anywhere. So he took my car to work, and it gave me the biggest warm fuzzies to see him in uniform, in my car, adjusting everything and backing out of the driveway. I don't even know why.

I just really, really love that man. I want to do everything I can to make his life worthwhile and enjoyable. I think it's working... he seems to like coming home at night :) (Even on the days that I can't bear to be touched.)

I have found the one whom my soul loves... and he loves me in return. No matter how much my body aches and breaks, that alone makes my life so rich and full of meaning that I could never consider giving up. Ever. For the sake of my husband, I will press on with a smile on my face, even if there are tears on my cheeks.
I'm back! It's been... painful. I would say interesting, but mostly just painful.

I spent the morning and afternoon after my ER visit sleeping off the drugs they gave me the night before, but once those wore off I was in pretty bad shape. Still in pain. Still twitching. I went to bed after loading up on the pain meds I had, even though they weren't effective, and managed to drop off to sleep.

At 4 a.m., I awoke from pain and could not fall back asleep. A few hours later and many, many pain pills later, it was so bad that I was crying helplessly on the couch. At the encouragement of my mom, I called the rheumatologist's office in tears, explaining about the ER visit and my ineffective meds (I'd taken 5 Tramadol and 2 Tylenol 3's in a 4 hour span, with no results). They said the doctor would call me back within that day, and that was that. I took the migraine meds and the Benadryl that was supposed to knock me out, but to no avail. I was just kinda sleepy, that's it. Drat.

E saved the day by coming by with a few of her pain pills she has for her RA. They're taking her off, so she's only got a few left, but she spared some for me because she knew how badly I was doing. That was what got me through the day, and I am so grateful.

M came over to "babysit" (a term he hates, heh). He basically just hung out on the couch and watched movies with me and let me sleep. Oh, and he bought me sushi and cookies because I asked him to. Seriously. Can you even pay someone to be that great? I don't think so. It was nice knowing that there was someone around in case I took a real bad turn for the worse, although it didn't feel as though I could get any worse! The day before, other M ran me to acupuncture and back, because I was not in good enough shape to drive myself. Basically, I have great friends. Also, D and E stopped by for a brief visit yesterday afternoon, which was nice. I do get to feeling kind of isolated here in the house, so it was good to see some "different" faces. (Apparently C asked D if he would swing by and see me sometime, because he knows I can't really get out right now. Sweet guy for thinking of me.)

Today is even more painful than yesterday, if that's possible, but I've got meds now. It's less of an "aching from the inside out" pain like yesterday, and more of a "oh my goodness please don't let anything put the slightest pressure on my skin" kind of pain, with a side of aching from the inside out. They say that the Inuit have 100 different words for snow, because there are so many unique kinds of snow. I didn't realize that pain is the same kind of concept. Pain is not one solid thing. There are so many different types... exquisitely detailed nuances that can mean the difference between bearable and excruciating. It's quite fascinating, really. I just wish I weren't so familiar with the subject matter.

I feel like it's time for a nap. I managed to get a shower and make the bed today, in addition to emptying out yet another box from the dining room. Yay! I accomplished things! I accomplished things this morning, too, but now I've done even more. I don't feel like the day was wasted. So I'm going to curl up, if I can bear it, and watch a movie as I drift off.

Mmmmm... sleep.

Unwell




All day staring at the ceiling
Making friends with shadows on my wall
All night hearing voices telling me
That I should get some sleep
Because tomorrow might be good for something

Hold on
Feeling like I'm headed for a breakdown
And I don't know why

[Chorus]
But I'm not crazy, I'm just a little unwell
I know right now you can't tell
But stay awhile and maybe then you'll see
A different side of me
I'm not crazy, I'm just a little impaired
I know right now you don't care
But soon enough you're gonna think of me
And how I used to be...me

I'm talking to myself in public
Dodging glances on the train
And I know, I know they've all been talking about me
I can hear them whisper
And it makes me think there must be something wrong with me
Out of all the hours thinking
Somehow I've lost my mind

[Chorus]
But I'm not crazy, I'm just a little unwell
I know right now you can't tell
But stay awhile and maybe then you'll see
A different side of me
I'm not crazy, I'm just a little impaired
I know right now you don't care
But soon enough you're gonna think of me
And how I used to be

I've been talking in my sleep
Pretty soon they'll come to get me
Yeah, they're taking me away

[Chorus]
But I'm not crazy, I'm just a little unwell
I know right now you can't tell
But stay awhile and maybe then you'll see
A different side of me
I'm not crazy, I'm just a little impaired
I know right now you don't care
But soon enough you're gonna think of me
And how I used to be

Yeah, how I used to be
How I used to be
Well, I'm just a little unwell
How I used to be
How I used to be
I'm just a little unwell
This may or may not be coherent. Fortunately, I only write for myself, so I know I'll understand me. That's a relief.

I want to preface this with the acknowledgment that I am a warrior, and a damn good one. I fight battles that many people will never, ever have to face in their life. I stare down intense chronic pain on a daily basis, and I win. Every day. I know I'm a fighter, and I know that I'm loved and cherished beyond belief. I also know that it's all going to be okay.

That being said, I will now proceed to lay bare my fears, vulnerabilities, and anger.

I spent a good portion of my evening and night in the emergency room last night. On Sunday, I spent an hour in the heat and that set off a migraine that was still super severe 24 hours later, and I couldn't get it under control with my pain meds I had at home. On top of that, I was having full body pain and fever and the damn twitchies were back, which exacerbated the pain. I could not handle it any longer, so I went in for help with the migraine and for pain control. (I was afraid of overdosing on acetaminophen with the current route that I was on.) I ended up sitting, waiting for a bed, for hours... twitching the whole while. It was kinda funny. What wasn't funny is that for the last hour or two I was in tears from the pain, weeping openly at a couple of points... but there was nothing they could do to help me until a bed opened up. Once they got me in, I saw a doctor and was injected with pain meds within the hour. I also got a referral to a neurologist, which is in the works.

The thing is, as relieved as I am to have gotten some help, it comes entangled with a whole host of other problems. Money problems. Health problems. Family problems. The implications of all of those.

I'm stressed, y'all.

1. Money- basic living expenses
2. Money- J's wedding
3. Money- medical bills
3a. Money/Health- prescription costs
4. Health- sickness, current and progressive
4a. Health- new symptoms
5. Health- diagnoses, current and possible
6. Health- pain control
7. Disability- to file or not?
8. Food stamps- do I qualify now?
9. Family- Mom and R divorcing

Can you tell I'm worried about money? lol. We're literally barely making ends meet. Stuff keeps breaking, like C's truck (or his battery), and we were already strapped because of the house and moving and all. Then we got the news that Mom and R are divorcing, and while I'm supportive of the decision, it means that my going on C's insurance a year earlier than planned is going to take $300 a month out of his paycheck. Oy. Not to mention that I have to get on his phone plan and his car insurance as well... Plus the added bills that living in an actual home means... C had it planned out well, but life happens, you know? Excrement transpires.

It's not that I'm worried, because I know we'll be okay, and worrying doesn't put money in your pocket, but it's just that... I guess I feel really badly because I'm the cause of a lot of these hikes in expenditures. I know that my medical bills are high. I know that it costs a lot to feed me. I know all this. I can't change it, but I know it... and it's awful. We've both cut out any unnecessary expenditures in our lives, but we're still just... barely making it. I've been trying to think of other things I can do to cut down expenses, like maybe buying less food, but I only get the basics, so... it's just expensive, not being able to buy the boxed and canned stuff. I feel helpless to make any meaningful, positive change to our situation.

And here's the kicker-- I wouldn't worry about it so much if we weren't also trying to save up several hundred dollars to make it up north in a month. I thought we could do it. I really did. And we could, if shit would stop breaking down! All of the several hundred that we'd allotted for the trip has gone to fix C's truck... the very thing that we need to have running to make the trip. Go figure. I'm tormented about this. I want to make the trip so bad, and I promised J that we would, even if we have to put it on my credit card, but I'm not sure I even have enough on my credit limit for that. Since R and Mom split, C has had to take over sole financial responsibility for my med bills. R gave me one last $80, but I've already had to put several prescriptions and copays on my credit card. I feel like I'm up a creek without a paddle here, and headed for a waterfall.

A lot of my torment is my promise to J (why, oh why did I make a promise?!), but I also really, really want to go back home again, if just for a visit. It won't be the same without D, of course, but I miss it so very badly... and I want to show C off. I want to show off the place to C, and C to everyone up there! lol.

I'm also still struggling with a loss of identity in several ways. Having this bad flare/migraine brought on by the heat shows me that I am, indeed, very heat sensitive now and can't afford to be out in it for long. That means that my dream of hiking the Grand Canyon rim to rim, or at least to the bottom and back up, may very well be beyond the realm of possibility.

Damnit! Can't I have just one dream that doesn't get snatched away by my stupid health problems?! I don't even know if I can have kids, I can't hike anymore, I can't hold a job, I can barely drive myself around right now, I can't keep a spotless house... what is there left for me to do? I still sing, but you can only sing to yourself for so long before you go crazy. I write, clearly. I read, when I can. (Funny-- I took a book with me to the ER to pass the time, but then found I couldn't read because of the migraine! Hah.)

It's not that I don't love my life, because I do. I love my husband, and I am blown away by his commitment to take care of me. It flabbergasts me. I just hate the position that I put him in, having to work 7 days in a row because of the overtime he's taking to try to make it all work... and I feel like I can't contribute a thing.

That's not true. I'm going to work tomorrow, no matter how terrible I feel, because I need the money to buy groceries. C can't afford food until he gets paid. I think he had $7 when we last looked at it a few days ago. I'm glad that I have a boss that is understanding, because she also kicks ass with an autoimmune condition and intense chronic pain. We are quite the team, us two cripples. LOL.

I've taken enough pain killers to put down a small mammal, and I'm still at the place where I'd like to take more, because it's enough to make me squirm. I'm used to dealing with a lot of pain, but this is... ridiculous. At least I don't have the migraine as well. Just a shadow of a headache.

So I am grateful. But there are a lot of battles for me to fight, and I'm tired right alongside my grateful. I'd like to catch a financial break. I'd like to go to Id. I'd like to be cured. (I think.) I'd like it if my hobbies and dreams didn't keep getting crushed. I'd like a pain killer that actually does what it's supposed to do. I'd like cookies. I'd like a puppy to snuggle with. And while we're at it? I'd like temperate weather that I can enjoy without dying one way or another.


[Chorus:]
This is the story of a girl
Who cried a river and drowned the whole world
And while she looked so sad in photographs
I absolutely love her
When she smiles

Now how many days in a year
She woke up with hope
But she only found tears
And I can be so insincere
Making her promises never for real
As long as she stands there waiting
Wearing the holes in the soles of her shoes
Now how many days disappear
When you look in the mirror
So how do you choose

Your clothes never wear as well the next day
And your hair never falls in quite the same way
You never seem to run out of things to say

[Chorus:]
This is the story of a girl
Who cried a river and drowned the whole world
And while she looked so sad in photographs
I absolutely love her
When she smiles

Now how many lovers would stay
Just to put up with every day and all day
Now how did we wind up this way
Watching our mouths for the words that we say
As long as we stand here waiting
Wearing the clothes or the souls that we choose
Now how do we get there today
When we're walking too far for the price of our shoes

Your clothes never wear as well the next day
And your hair never falls in quite the same way
But you never seem to run out of things to say

[Chorus:]

Well your clothes never wear as well the next day
And your hair never falls in quite the same way
You never seem to run out of things to say

[Chorus:]

This is the story of a girl
Whose pretty face she hid from the world
And while she looks so sad and lonely there
I absolutely love her

This is the story of a girl
Who cried a river and drowned the whole world
And while she looked so sad in photographs
I absolutely love her
When she smiles
When she smiles!




Oh (oh oh oh)
Oh (oh oh oh)
Oh (oh oh oh)
Oh (oh oh oh)

Keep drinkin' coffee
Stare me down across the table
While I look outside

So many things I'd say if only I were able
But I just keep quiet
And count the cars that pass by

You've got opinions, man
We're all entitled to 'em
But I never asked

So let me thank you for your time
And try to not waste any more of mine
Get out of here fast

I hate to break it to you, babe
But I'm not drowning
There's no one here to save

Who cares if you disagree?
You are not me
Who made you king of anything?
So you dare tell me who to be
Who died and made you king of anything?

Oh (oh oh oh)
Oh (oh oh oh)
Oh (oh oh oh)
Oh (oh oh oh)

You sound so innocent
All full of good intent
You swear you know best

But you expect me to
Jump up on board with you
And ride off into your delusional sunset

I'm not the one who's lost
With no direction oh
But you'll never see

You're so busy makin' maps
With my name on them in all caps
You've got the talkin' down
Just not the listening

And who cares if you disagree?
You are not me
Who made you king of anything?
So you dare tell me who to be
Who died and made you king of anything?

All my life
I've tried
To make everybody happy while I
Just hurt
And hide
Waitin' for someone to tell me it's my turn
To decide.

Oh (oh oh oh)
Oh (oh oh oh)
Oh (oh oh oh)
Oh (oh oh oh)

Who cares if you disagree?
You are not me.
Who made you king of anything?
So you dare tell me who to be.
Who died and made you king of anything?

Who cares if you disagree?
You are not me.
Who made you king of anything?
So you dare tell me who to be.
Who died and made you king of anything?

Let me hold your crown, babe.