Took little Bobbers in to get that respiratory infection he couldn't kick taken care of. The vet was curious and suspicious as to why a normally healthy cat couldn't kick a regular infection, so he ran a test, and sure enough… Bob had contracted feline leukemia. Corey and I made the decision to put him down then and there, mostly because any money we can spare goes to treating my diseases, and he was just gonna be sick and miserable until he died. That's not fair to him. So, as much as it sucked, they euthanized him right then, with me holding him in my arms.

It was awful. Not because it wasn't quick and humane, but because I lost another child within 4 1/2 months. Bob's brother and litter-mate, Cortes, died on February 6th, and Bob wandered the house and property for weeks, crying for his brother, his favorite playmate and closest friend. That made it really hard for me to deal with Cortes's death, not to mention the incredible suddenness of it. He was fine that morning, he ate the antifreeze, two hours later he had been euthanized and was dead. Same with Bob. I had this horrible premonition when we took him in, but I kept trying to shake it off and chalk it up to worry, you know? But I knew there was something seriously wrong. I just knew. I know my cats. He cuddled up to me the night before, but I regret having been out of town all day and spending our last day together away from him. We had one last night together, though. Then the appointment, and within half an hour… boom. That was it. It was devastating.

Fortunately, Corey had the day off and was with me, so after I relinquished Bob's tiny, limp body he took me home and watched an episode of Cosmos with me while I ate cake I had bought the day before from my favorite bakery. I felt some better afterward, but my grief has stayed with me, and at that time worry was also gnawing at the edge of my consciousness as well, because we had to take the other two cats to be tested for feline leukemia, which apparently transmits incredibly easily via saliva. Bob and the other cats weren't very close, so there was little to no grooming going on, but all of the cats do share the same food and water dishes, which could totally pass the disease on to the others. I was going crazy with worry and fear and grief, making sure that I spent time with each of my kitties… in case it was the last time. I was really worried that Juneaux would be sick and I would lose him, because we've been together for so long, and been through so much… he's been the thing that has kept me alive/kept me from attempting suicide several times, and he is the thing that kept me going during my deepest and most miserable times of depression while beginning and trying to deal with the abuse and PTSD in Idaho. He is as near and dear to my heart as my family, and it would destroy me to lose him before he dies of old age.

Corey reminded me that I'm going to lose Juneaux someday anyway, but I told him that there is a huge difference between losing him to old age and losing him to tragedy. It's the same for people. It always tears you apart, but it's just… different.

Took the cats in late yesterday morning, and all of the employees and doctors were very kind and respectful, since they knew I had lost Bob just two days ago. Our regular vet was in that day, so she came back in after testing the two cats and asked me if I wanted the good news, or… the good news? I wasn't sure I heard her right the first time, so I was kind of silly and stunned, asking the same question a few times, but yes-- both Juneaux and Fancy have a clean bill of health. I made sure to get them both vaccinated against feline leukemia right then and there, though we still don't have enough money to cover the other vaccinations. I think they'll be okay. The vet said that one thing that worked in their favor is that they are adults, so their immune system is fully developed and stronger than Bob's was. Also, they don't get into fights regularly like Bob did, so less chance of catching it from other cats. I think that applies to rabies and distemper, as well.

I'm feeling better, emotionally, after having that relief of good news, though I am still grieving hard over Bob. Not constantly… and it's a little easier this time because there are no other kitties wandering around looking for him and crying, and also, Bob used to be out and about for large portions of the day, evening, and sometimes night, so it really just feels like he's out somewhere and he'll come back later. He wasn't constantly underfoot, so I'm not constantly reminded. That helps. I don't know if it'll be counterproductive in the long term to healing, but it feels better right now, and that's kind of all that I care about.

Went to a farewell party for two friends who are moving across the country (stop moving away, mofos!), and it was nice. I enjoyed myself, though for a while it seemed like everyone was just kind of wandering around more or less bored… but V, one of the other women, she insisted that everyone start playing these games that she brought, and that totally made the tone of the party so much better. I fell asleep during the second game, which is kinda surprising because it was super loud and lively, but when I need a nap my body will just go for it, and I had been putting it off all afternoon because I'd been out and about and busy. The man of the moving couple didn't quite seem like himself, which was weird, but then I've never been around him when he's drunk more than one or two beers, so that could be it. It could also just be the stress and grief of moving, especially moving away from such good friends and such a tight community such as we have now. I hope they can find the same happiness where they go. I had a bag of gifts for them, and he texted me later and said that it was a very touching gift, and thank you immensely. That made my heart smile, even if it is heavy that they're leaving. I care about them a great deal, and they have made it clear that they really like Corey and I, so it really sucks that they're moving. It is hard to find a couple our age to hang out with that aren't ghetto assholes or druggies, or with an obviously unhealthy relationship dynamic, and that's just way more drama than we want to expose ourselves to. The moving couple had so many of the same interests, and they have a zero-drama-tolerance philosophy, like us.

So I'm grieving two things. Three, if you count the memory of Cortes's death that's now super fresh and in my face again. I ate some italian food that I probably shouldn't have on Friday when we went out to eat (I begged for Italian over sushi, and now I'm paying for it lol), and now my guts are in a huge uproar. Probably because I ate the leftovers last night when I returned. My intestines sound like water gurgling down a drain pipe. It's definitely a weird sensation. I just wish I could get off of the damn toilet! That's where I'm living today, apparently. I know that my sadness is a large amount of my gut problems. I always have gut problems when I'm stressed out by anything… and losing what to me was legitimately a child, albeit furry... I consider the cats to be like furry human toddlers. That's about the age and communication level we're at together. Also, being unable to carry or bear children of my own… they are truly my surrogate babies. And I've raised most of them from infancy, if not birth. Bob and Cortes were both babies I raised from birth, and Juneaux was only a few months old when I found him. I feel that I have a right to grieve as much as any mother grieves over her lost human child. So, that being said… I know why my guts are all jacked up. Death, loss, stress, grief, loss…. so much loss… I'm just so glad that Corey understands my grieving process and is there to back me up and comfort me when I need it. Love that man.

I've spent the last hour or so putting together (and editing the track info on every track for accuracy) a playlist for travel. I dislike radio stations because you have no control over what they play--and all three of the stations in Yuma suck--and they inevitably cut out into annoying static somewhere throughout the journey. When traveling with Corey, he always has his phone or usb with tons of good music, but he is rarely my driver because of work. My plan is to burn several cd's, however many it takes to fit this playlist on, and keep them in my little GPS bag so that I will have them whenever I am traveling, because I always take my GPS with me on out of town trips, even if it's the same destination that I've been to every month for the past year. Just in case. Detours, and all that. Plus it finds restaurants and other stuff! Best Christmas present ever. Seriously. It's been so practical and useful! And I don't have to finagle trying to borrow my grandparent's GPS any longer.

Putting together the playlist has me listening to songs that I haven't listened to in the better part of a year, thanks to my discovery of Pandora and Youtube playlists. I haven't relied on my iTunes library in quite some time, but it was nice to discover favorite songs again. The interesting thing is that I started going through my old Christian Rock/Praise collection again, and I felt things… it was just very interesting.

Listening to my old Alternative Christian Rock brought back all the warm fuzzies from my time in Idaho, which is when I began listening to it and collecting various tracks and artists. It's kinda weird to feel the rushing tingle of whatever it is I'm feeling, but I just feel wrapped up in a warm hug, almost, when I hear certain songs. I think a lot of the powerful effect they have on me is that they are heavily associated with a lot of the work I was doing to confront my abuse and to break free of my crippling depression, so I feel that same jolt of self-affirmation and power that comes with really trying to better myself and my circumstances. That whole time period of 2 or 3 years, however long it was… it was difficult beyond all reason at times (a lot of times), but I also made more breakthroughs and developed myself personally more than I ever had before in my life. I really think it was the time I spent in Idaho and the summer in LA that gave me the backbone and strength I needed to face life with multiple degenerative chronic illnesses. I learned my own strength and intelligence, my charisma and ability to love and be loved. It was necessary preparation for not just the next phase of my life, which included college and my work with The Healing Journey and getting married, but for the rest of my life. My time at Bible college, SOULS West, was more of a test of my stubborn resilience, and without SOULS I never would have gone to Idaho like I did. I got a job offer from the Conference up there as a Bible worker (which I thoroughly hated, as much as I hated canvassing, but I can't deny the skills I honed through both of those occupations), and thus I was connected to the Adventist community where I lived in a way that I could not and would not have achieved any other way.

While I no longer hold to the beliefs that I struggled to adhere to in those days, I still get that rush of pleasant feelings when I hear the music of those days. When I first felt it, I questioned a little whether it was perhaps dormant beliefs rearing their heads? But no. When I listened to the lyrics, though, I thought that, yeah, it must be nice to believe in your ultimate importance in the grand scheme of things, to believe that there is more to life than meets the eye… and I believe that there is, but not in the Christian scope of things. Not anymore. Maybe if I hadn't gotten bold enough to start examining the questions and thoughts that I'd always buried before, lost in the flurry of religious activity and constant motion, then I'd still be a member of the church in some way or another, even though I probably wouldn't make it to church super often these days. I admit to missing the camaraderie of a unified culture, the instant connection with other Adventists due to common belief. How could I not? It gets lonely here, with only cats for company. Yet I don't have the energy or will-power to overcome the pain and seek out other company, so maybe it's for the best. Talking to people is really exhausting.

I saw the geneticist at the end of last month, and my rheumatologist earlier this week. At the advice of the geneticist, I quit taking Vitamin C supplements because I didn't see any difference or help from them. She said to note carefully if I did feel any different upon quitting, and to start up again if I noticed a benefit to me. Well… they were doing more than I realized. A few days to a week after leaving off the C, my pain levels skyrocketed to what they had been back in the bad old days, before I had found proper help for my pain. Even with the strong medication I'd been given, I have been in agony for the past week. It's been awful, so awful. It's not just pain, it's a painful burning within the bones and concentrated in the joints, like they are filled with napalm and brimming over into my muscles… I've had to use my walker to creep around the house this whole week. Thankfully, my fatigue has increased with the pain so that I am sleeping just as much as before, if not more, which means that I am insensible to the pain consciously, though I definitely still feel it. I know, because sometimes I wake myself up with moans that sound remarkably like the lowing of a cow. Go figure. Having figured out that it was most likely the lack of extra Vitamin C that caused this dramatic change (because nothing else is different), I began supplementing again about two days ago. I'm noticing some little bit of change for the better; not much, but any relief is something to shout from the rooftops about. Yes, it was that bad. I have no idea how I managed to visit the rheumatologist all the way across the state in such a state. I am certain that I will continue to improve, though I can't say at what rate, and I feel that this experience may have knocked me down a step or two permanently. Alas. It was an important revelation, however. What about Vit. C prevents the burning in my bones and joints, the pain that pervades every single nerve fiber in a flaming gout of misery? I don't know, but I do know that I will never allow myself to run short, ever. This extra amount of pain is the reason for my increased presence on my blog, however. It's been that and reading-- distraction of the mind. Anything to not focus entirely on my agony.

Speaking of the rheum, it was a fairly productive appointment. I informed him of my ever increasing back pain, the pain due to the injury I gave myself during my last bout of narcoleptic-like sleep attacks. I fell asleep while standing at my dresser, taking my meds, and then I fell backwards completely prone and hit my head on the metal frame of the bed. There was nothing I could do to stop myself when I woke up halfway through the fall. I hurt my head, of course, but I also jammed my back somehow when I landed on the hard floor like a piece of bread butter-side-down. When I went to my chiropractor, he said that I had 3 or 4 vertebrae all jammed in together. I've seen him a few times since then, and had several massages, hoping to heal it like I did the subluxated ribs that I got in the hospital about a year ago. It's even the same place that hurts. :( This time it's the spine, primarily, though the ribs are also affected. Mer. Anyway, Dr. S ordered an X-ray, which we both agreed would be the best thing. He could have gone with an MRI, but I asked him to go the cheap route.

As an aside, I worked the numbers recently, just in my head, and I realized that I need a minimum of $400 a month to cover my very basic medical bills and prescriptions and travel costs. That is pretty discouraging to me, especially as I was denied disability again and the only way I can pay that is to beg my dads for money. I hate doing that… which is why I have this low-grade feeling of desperation bubbling through my core at all times, though it increases to a high boil whenever I have to pay any bills outside of that.

Anyway… I shared with Dr. S that I had been denied disability again, and he was incredulous. I told him what the letters said, and he responded with a slightly indignant, "But you have EDS, and you have it bad. I mean, you really have it bad!" That was both slightly discouraging and affirming. I keep hoping for a spontaneous recovery, but my better sense tells me that this won't be the case, especially as my diagnosis list on my rheumatology paperwork still lists Dysautonomia and Inflammatory Polyarthritis as confirmed diagnoses, in addition to all of the endocrine diseases and other fun stuff. I really am amazed at how stubborn I was in previous years, insisting on finishing Bible college despite severe illness of a then-unknown nature… and college classes… and work at the Healing Journey… I really did a lot before my body caved in and became more helpless than before. When I think about all I accomplished (especially all of the backpacking and camping and other achievements from my time in Idaho), I am very proud of myself. I really am a tough chick!

Dr. S ordered several blood tests in addition to the back X-ray which I was able to knock out that day before I went home, but I have to go in for an ultrasound of the hands when I'm in Tucson next. My next visit will include the ultrasounds, a visit to Dr. L, my geneticist, and Dr. R, my cardiologist. Oh hey, did I mention that I've started Physical Therapy? Yes, I have a therapist coming to my home to get me started on a home exercise program. I had to cancel the last appointment, because I was in the throes of my increased pain and fatigue, plus the previous appointment had come right at the threshold of my slipping into old pain-types, and we had definitely over-done it. I am finally recuperated from that visit, but it's been almost a week. She has only 3 more visits she's allowed to make (stupid insurance), but I'm doing pretty well on my own. She just wants to show me what I can progress to, in time, but we are starting very slow and small for now. It does feel good to be working my muscles again, beyond my daily evening walk. Takes me back to my Acrosports days, in a way. I know that by a lot of people's standards these exercises would hardly be "pushing it", but for me and where my body is right now, it is definitely pushing it. It's a good opportunity for me to continue learning how to determine my limits and quit when I need to… despite my urge to keep going. Modified crunches have nothing to do with my worth, but it's hard to believe that thought sometimes, especially when I remember what I used to accomplish. I've fallen pretty far… It's not my fault, though. These are just the consequences of my faulty genes, and I'm making the best of it.

Really, considering how physically miserable I am most of the time, life is actually pretty good. My marriage is doing fine. In fact, things feel better lately than they have for a long time. In another post, I'll talk about the Masquerade Party that we went to, and all the fun stuff connected to it. It's time I ate a little something, took my meds, and surrendered to sleep yet again. Good night, all. (Or morning, if that's where  you're at.)

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

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

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

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

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

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

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

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

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

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

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

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

I broke down crying today during my appointment with my "lady doctor". (Yeah, I could just say gynecologist, but I honestly like the phrase "lady doctor" better. It sounds more elegant, don't you think?") Well, not breaking down as in sobbing, like buckets of tears, but I did cry and she handed me the tissues and I felt a little embarrassed because I try to keep my crying to a minimum, and definitely private and not in front of my doctors. She was very understanding, though-- I love having her as a doctor. I only see her once a year, but she's awesome.

She asked what had transpired in the past year, so I gave her a quick rundown on my health, on the status of my marriage, of the stress that we are under (and that's where I started crying), etc. She was very sympathetic and encouraging, and she said that she hates the diagnosis of fibro the most for her patients because it just causes so much pain and horror in their lives. She is a total believer in fibro and how it can wreck a life, and we even had a little chat about pregnancy and fibro, the risks and challenges, etc. She really wished me well and had good wishes for me that I would find out, through the doctors and tests, what on earth is really going on so we can treat this and get it under control.

Get this: even my gynecologist, after just a brief rundown of my health changes in the last year, says straight out that I am dealing with something beyond fibromyalgia. There is another disease at play here and we haven't figured it out yet, but it is continuing to drag me down and make life feel more and more impossible. I want to find the line between reality and complaining, but I also just want to vent and explode into the atmosphere with a supersonic silent scream at how hard every day is, how much I miss my old life, and how sick I feel every day and night, how much acute agony I chronically endure. Since I got taken off of the hydroxychloroquine until my appointment with my rheumatologist in Phoenix, my joints have jumped in on the pain parade full force, even more so than before. I am not aware of a single joint in my body that doesn't ache on a near constant basis, even without use or pressure.

I hardly do hot baths anymore because putting weight on my hands to lever myself up and out of the tub is almost unbearable; walking is painful at all times because of my knees, ankles, and all the articulations in my feet. Did I mention that I received news at my last pain doc appointment that I basically have gout?! I'm a 26 year old woman. How the fuck can I have gout?! So I got this paper that lays out the foods I can and shouldn't eat, but I'd just started to revamp my diet a bit and make it healthier so I can lose weight hopefully, but the gout paper basically told me to continue eating the way that I have been! Just with more veggies. I think it's just going to be trial and error, really. This gout thing is in conjunction with my pain doc's sincere conviction that I have a type of rheumatoid arthritis that doesn't show up on the AI blood tests, but that there are definite ways of diagnosing. That's a very valid theory, especially considering my poor joints now that I'm off of the lupus/RA drug and doing so much more poorly. (My friend with the same type of RA as the doc is postulating takes hydroxychloroquine for it and it helps her. We both think that, you know, if I'm taking an RA drug and it's helping and then I get off of it and I worsen, that combined with other clear symptoms makes a pretty strong case for seronegative RA.)

By the way, a blog that I follow regularly, chroniccurve, has an entire post called Seronegativity for Dummies, and I strongly suggest you check it out if you're at all curious about what the heck I'm talking about. She's a great writer, a strong advocate, and does not spread misinformation. Best of all? She's totally my age or maybe a bit younger, a peer! I love it.

I am looking forward to my appointment the first week of December at the rheumatology department of the University of Arizona. I hope it will be a good and productive experience. Yes, I'd prefer that the doctors are pleasant and funny and good looking as well as intelligent and diligent, but honestly all of that falls on the back burner when I regard information and a correct diagnosis. What would you do for a Klondike bar? I think the question is, what would you do for a real live answer? If I just had a reason for my every increasing pain and continuing fatigue, it might make it easier to bear.

I realized this week that even though he loves me and he is totally there for me and is my #1 supporter, sees everything… Corey will never really understand what life is like for me, what it's like to be sick like this, none of that. (Random insert, but I'm really tired and falling asleep while typing this, so I closed my eyes for a very long blink and had a momentary dream/vision/hallucination of passing out and being lowered to the ground by my group of friends… the ground that was made of various kinds of ice cream. Woooooow.) So, back to Corey. See, he rarely even gets sick, and any pain he's experienced has been acute in nature, not to mention that he's good at putting mind over matter and ignoring the discomfort. Sometime I'll have to share the story of when he sprained his ankle at school in the morning, walked on it the entire day without seeing the nurse, and then walked home. Crazy dude. Crazy! But because of his lack of experience with prolonged pain and sickness, he really has no vantage point from which to really see into my experience and sort of assimilate it into his own, to pretend that he's me in a way.

Honestly, that realization was a little bit devastating to me. I knew he had my back but I had always just kind of assumed that he knew exactly what I was dealing with and was choosing to be dense at times. Oops. Heh. But no, he doesn't truly get it, and that's okay. Who does, really, unless they've lived it? I mean… I know what it's like to have my bones feel like they're filled with fire and etched with acid; I know where the articulation of my joints are because the ache is particularly sharp, thick, and overwhelming there. I know what it's like to literally be crippled by pain and not be able to take a step forward or stand at all, even sit, due to epic levels of concentrated pain in one area or another. I know what it's like to suddenly be dizzy and lose my footing on a completely flat surface. I know the jolting awake from a presumably sound sleep for no apparent reason (or because the pain followed you into your dream and it got too overwhelming), maybe just once that night, or maybe again and again and again, every hour or half hour, and I know the feeling of overwhelming gratefulness that I don't have to try to drag my invisibly battered and bruised carcass into work every day. Objects fly from my hands when a twitch attack strikes, I can't walk, and it jerks and jolts already painful muscles and tendons and joints. I need the walker to walk, especially with my very low back having decided to give up on me in excruciating spasms and weakness at totally random intervals, but my hands hurt badly from the weight on them as I push myself along with the walker and from having to grip the handles the whole time.

On the other hand, that same walker allows me independence that I would not have otherwise, and it allows me to walk a half an hour or more every night, pain or no pain. It's cleansing, this walking, and Corey joins me for that, too. It's during the walk, during the errands on his day off, that I realize he will never truly get it unless it happens to him. Good god, may it never happen to him. He hasn't the patience or the proper personality to deal with such unrelenting pain and the constant onslaught of old and new symptoms that always keep you off balance just a little. He does not have the good humor to laugh through or about a particularly painful day or hour or situation. He turns into a grouchy, mean person when subjected to large amounts of pain that are "semi-chronic" (lasting for more than a day). I've seen it first hand! So really, it's better for everyone involved that I'm the sick one, not him.

As you can see, there is much for me to think about and feel when it comes to my current "lifestyle". I didn't choose it but I do have to make the best of it because it's not going away, not anytime soon by my guess, and I'd rather not waste a huge chunk of my life just waiting to get better so I can begin being the person that I want to and doing the things that I want to do. Hell no. Corey summed it up pretty aptly when he said that there was a lot of "trauma" around the change in my life and my sicknesses, and he's right. There is a lot of trauma, stuff that I need to work through, and I really want to. I tried a particular place this week that seemed promising based on a lead from Bisbee when I was visiting the other week, but the people here were somewhat rude and quite unhelpful and it did not pan out at all. No counseling for me at this time; can't afford to add another doctor to the mix right now. Not when every penny of what I use to pay my doctors and get prescriptions and such is a gift from family or friends or somebody. God I hope I can sell these crafts that I've made somehow. It's the only way I can think to make some money right now that's within my physical capabilities. I haven't made much in the past few weeks, though. Been too… depressed. Sick. Totally unmotivated on top of feeling so feverish and flu like and drained and just blah. I'm still super shocked that I actually had a great time in Tucson and wasn't all that ill.

I blame our mattress, actually. My sister in law's mattress helped keep my pain down, I think, but ours beats me up like hell. We need either a new mattress or one of those memory foam topper thingies for it, and we also need new pillows, like, SO bad. Have for a couple of years now. Anyway, I can barely keep my eyes open, and I'm just rambling at this point in any event. Hit me up if you wanna buy us a mattress or pillows, or if you wanna buy some crafts, yeah? Keychains, beaded autumn wall hangings, necklaces, earrings, painted prescription bottles, and more. Maybe I'll do pictures some time. Maybe. If I remember… and feel like it. Heh.

Also, I was just hit with a strong but irrational desire to go to the zoo. What's that about?

Have I mentioned before that I'm so over this whole pain/being sick thing? 'Cause I totally am.

Guess what, friends? Oxycodone prescriptions cannot be faxed. That's right, after the entire freaking week that I spent fighting to get that prescription, being told this morning that it was going to be faxed in, being told this evening that it was faxed in and then not being able to find it at any of my pharmacies… I have now had to settle for hydrocodone (which, if you'll remember, stopped working effectively for me months ago) at a lower dose than the hydrocodone that I was on previously (when it stopped working), and at a frequency of every eight hours. I'm basically laughing bitterly inside my head, but you know what? If I can just hang on until Monday when I see the new rheumatologist…  and it's better than suffering without anything. It really is. I will just try to sleep. A lot. Like I've been doing since I ran out of meds. I mean, at least the pain is below a 10, right?

By this morning my bowels were completely emptying themselves from the pain and the stress on my body, mostly one way, but a little bit of the other by afternoon. I broke down crying on the phone with the nurse when she told me that they couldn't fax my script and that maybe they could mail it to me? She was really nice and took pity on me, which I appreciated. She even said that she was sorry for the whole mess, which I greatly appreciated, because this whole mess has been because of the doctor's offices… more specifically, that lame ass rheumatologist that I have been seeing for so long. (I'm toying with the idea of suing for damages… loss of income, loss of livelihood, that kind of thing. Especially if I come to find that there is any kind of permanent damage that could have been prevented if my doc had, oh I don't know, done some basic diagnostic work? No, no… not bitter at all. Hmph.)

I'm still hurting, and hurting a lot, but… it's better than it was just two hours ago. I can survive a few more days. I hope.

Here. Alive. Still recovering from the vigil...

That, and C's computer "broke" two days ago, the very day that I wanted to spill myself all over the keyboard and leak into the screen. Didn't happen, obviously, 'cause the computer was down. Then it fixed itself. I made C back up his most important stuff, just in case, since he had never gotten around to it.

Ran out of pain meds yesterday morning-- took the last one sometime before noon. Not even 24 hours without prescription meds and I was a quivering, whimpering mass of painsomnia and awful flu-like symptoms. I essentially staked out the pharmacy this morning until they opened. I still hurt now that I've got the real stuff in me, but it's so much less in comparison that it's almost laughable. And maybe it's just that the overall general crappiness has been diminished to the point where I notice the really specific and intense pains?

You know what? I don't care. I just care that I can breathe again, and look in the direction of the fridge without threatening to toss my cookies... or think the word "cookies" without threatening to toss them.


I don't care who disapproves. I love my pain meds, and I cannot function without them. I would sell my body for money if I had to, in order to be able to afford them. I joke about that sometimes, but I'm deadly serious about this one. With the memory of my Night of Horror so fresh in my mind, I know that I would do a lot of things short of thievery or murder to make sure that I stay in meds... if I could move well enough to do them, that is.

I can't even... I just can't. I'm done. So very, very done.

I didn't sleep last night. (I should be trying to sleep now, but the pain is hammering away at me and I'm thoroughly distracted by it.) I was definitely at a 10 on the traditional pain scale, and having a full body twitching episode to boot. C held me while I cried. Well, ok, I dozed some eventually... but I kept waking myself up with cries and moans of pain and alarm. My PTSD symptoms have been escalating gradually over the past few days, and I'm not sure why. They've been interrupting my sleep, and last night was particularly bad. I've been anxious, too... jumpy. Whatever.

Anyway, I wasn't able to drive because I couldn't lift my arms or turn from side to side, but a friend picked me up and took me to my doctor's appointment. While there, the endocrinologist proceeded to exclaim over how I've gained 17 lbs in the past 3 months.

Great. Thanks, doc. I knew I'd been gaining weight, and I'm trying to eat healthy so as not to gain unnecessarily, but I'm pretty much in enforced sedentary mode, here. Not to mention that the Lyrica made me gain some weight, and I never lost the weight I put on from eating all those damn cookies (oh, those delicious cookies!)...

So anyway, I went in feeling crappy and exhausted and miserable and in pain and came out feeling even worse about myself.

I'm so done.

I'm sinking lower and lower into the pit of depression that I recognize oh-so-well... and I feel like I'm too weak to even try to pull myself out, or slow my descent at all. If anything, I welcome the abyss. It's familiar and painful and maybe this inner pain and shredding self-hatred will distract me from the physical pain that is leaching the color from my life and the life from my soul.

Playground school bell rings again
Rain clouds come to play again
Has no one told you she's not breathing?
Hello, I am your mind giving you someone to talk to
Hello

If I smile and don't believe
Soon I know I'll wake from this dream
Don't try to fix me, I'm not broken
Hello, I'm the lie living for you so you can hide
Don't cry

Suddenly I know I'm not sleeping
Hello, I'm still here
All that's left of yesterday

Thursday evening I took my friend to the doctor's appointment she'd gotten set up at the free clinic. We basically sat around in a (very) cold room for 2.5 hours, then were shuttled off to the crisis intervention clinic to sit for several more hours. She wasn't allowed to leave, because she's a suicide risk, so I left and brought some food back at one point. They "committed" her without consent, again, because of the suicide risk. So when I got home after 1 a.m. (the initial appointment was at 6:30 p.m., mind you), C laughed long and loud at the fact that I accidentally committed my friend. Oops. But she is getting her psych eval tomorrow, which will get her the help that she needs, so I have no qualms.

The cold room, the stress, and the late hour all hit me like a brick the next morning, Friday, which also happened to be the morning that I ran out of pain meds. Of course. I had an appointment with my GP who graciously gave me a stop-gap prescription for pain meds, but upon trying to fill them I found that the insurance regulations wouldn't let me. I had gone through the other meds too quickly, and they are a controlled substance. I went to the rheum's office in tears and pain, and they moved my appointment up 2 weeks which is great. They also suggested a way to possibly get my scripts filled, which I tried to no avail. Fortunately, I kept the pieces of paper and was able to get them filled elsewhere later that night.

First, though, I came home and collapsed tearfully into bed where C was lying. He held me as I sobbed my despair, pain, and frustration, suggesting that I take a hot bath to ease some of the pain. I took his advice, then took a several hour nap. A couple of hours later, we were able to get one of my scripts filled, and that's what's been keeping me sane. I'm still trying to break the pain cycle that lapse caused, but it's tough. I couldn't walk around the grocery store that night so I used the electric cart, which was an interesting, kinda fun experience. They're not terribly fast, but they corner pretty well.

Yesterday C bought me rum and coke, in the hopes that I wouldn't have to use as many pain pills if I were liquored up. It was a good idea... until I did some research and discovered that acetaminophen and alcohol is a big no-no. I'll have to wait until I've got a different sort of pain med to take advantage of boozing it up, or risk liver failure. Not a pleasant prospect. I hope I didn't hurt it too much with what I drank yesterday. It was only one glass, though, so I think I'll be ok.

Other than trying to beat back the pain (and it's a doozy), I've officially joined the guys in nerding out. M is DMing a campaign that I've rolled up a character for, and we had our first session last night, so I'm a DnD player now I guess. I never thought I'd "stoop so low", though I'm finding that it's actually a fun pastime.

I'm just tired. Tired of hurting so badly... and for no good reason. Almost every morning when the pain starts hammering at me really bad, I just kind of sit back and marvel in puzzled confusion at the phenomenon of seemingly causeless pain. I don't understand it. Why do I hurt all of the time? It's not fair, really. But, hey... it's my life right now. What else can I do but bear it and try to make the best of things?

I suppose I'm not in the most cheerful of places right now. I feel like I'm being ground down to a stump by this damn pain. C was really good to me on the day without meds, more than usual. (If that's possible.) When I was crying in his arms, I wailed to him to help me, please, help me. I know it bugs him that he can't do anything to help me, so he just kind of puts it out of his mind and doesn't worry about it, but that day he was more solicitous and affectionate than usual. It was very sweet, and I reveled in it. He also put a quick end to my death wishes, which is easy enough because I really do want to live. I just yearn for the utter peacefulness and desensitization that the grave promises. I'd settle for a coma, really. Anything to end this damned pain. When I sniffled to C that I was depressed, he agreed with me completely.

Don't misunderstand me. I'm not suicidal. I don't want to die. I just don't want to hurt anymore. But I love life, my life, far too much to follow the path of that thought. My hubby needs me. After all, I'm the only woman he's ever loved. :)

He's gone. He's really gone. As in, like, gone gone.

I know I said my goodbyes in February, but I find myself wishing that I had been there closer to the end... to say goodbye when he was actually on his way out. I know it's silly, but... maybe I just wish that I could have seen him again.

Then again, it's not the frail, sickly D that I miss. It's the robust, ruddy, mischievous twinkle in his eye D that I miss. I miss "Ay-a-yellow-filly-havayeeee" and Friday night worships with two guitars and lots of harmony. I miss special musics and Farmer's Markets and picking strawberries together in the cool dampness of the morning. I miss following him around the garden and learning so, so much from him. I miss starting seedlings together, and the funny instruction sheet he left for me, and the pride I took in being the first seedling babysitter to keep the plants alive (and healthy!). I miss the silly jokes, the birthday song that he wrote for me, and the solid advice and keen Biblical perspective. I miss the male voice in our nightly "Our Father". I miss, "Does anyone have anything they'd like to share?" from morning worships.

Oh god, I miss him so much!

And what sucks is that no one recognizes me as a grieving family member... Well, that's not true. C and the girls do, of course, but they get all these "We're so sorry" and "We're praying for you" condolences, but... I'm hurting too! It's not that I want the words, it's that I want the recognition that he was someone special to me, and I'd like to think that I was someone special to him too. He was a father to me. I've lost a dad, one of the only good ones I've ever known, and much too soon. I was looking forward to receiving advice on life, marriage, and gardening for years to come, and to introduce my kids to one of the wisest men that I know. I was looking forward to continued jokes and learning about gardening from him as I started my own for the first time.

The grieving comes and goes. I cried a lot yesterday morning, but once I got to work I stopped crying and got busy... and then I couldn't stop moving, couldn't stop doing stuff. I finally forced myself to lie down and do deep breathing around 9:30. I know I overdid it, but whatever. I just took extra painkillers and called it good. I didn't even wake up in pain this morning, which was really strange for me. A rare experience. Sure, as the day wears on the pain creeps in and crescendoes, but again... extra painkillers.

Today I was just kinda numb (and exhausted)... until I heard a song on the radio. And then I started blogging and the tears just won't stop now.

I know that he's not suffering, sick, or in pain any longer, and that gives me intellectual peace... but it doesn't stop the hurt.

My heart is broken.

Not to mention that a young friend from church that I grew up with was shot and killed yesterday. Two in one day. That was hard. I mean, I watched this kid grow up. We were friends. I sang at his 8th grade graduation. We went hiking together last fall. And now he's gone. At only 19.

Life is sobering. It's beautiful, if your eyes are open, but it's also somber and uncertain. What an exquisitely painful mix that is.

When I packed up some stuff from the apartment on my way home from work, I found a jar of grape juice that D canned. I hadn't opened it yet, because I was waiting for a special occasion. Well, I guess this is it... I'm going to open it and drink to his memory... and cry all the while.

I miss my father. Life isn't fair. And cancer sucks.

Here's the song I heard on the radio. I'm going to post it on J and K's Facebook pages... I think it will be meaningful for them, too.

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.

It's really amazing how important body fat is, especially in the face. When you see someone with no fat at all, you instinctively assume they're very, very ill.

In D's case, that's true. I've come to my own conclusions on the matter, after gleaning info from the girls and from C, and... I really don't expect him to live much past the wedding. He will not be able to attend, that much is clear (even in the state he's in now, he wouldn't be able to attend), and C will be staying with him. He should not be by himself in this state. Honestly... I'd give it two months. Max. I think that the wedding may be a time of deep joy, but also deep sorrow, as I think that D will be passing away about that time. I know the girls are planning to come down and play music for our wedding, but they may choose not to if D passes away. I understand, and I'll be planning back up music. The only major hitch in that is that my wedding coordinator is planning to travel down with them, and if they don't come she can't come, so I don't know what I'll do... probably hand the reins of the day off to Mom and/or D, who I'm sure will work beautifully in tandem. Mom will be walking me down the aisle, so D will probably take the bulk of the work... and I'll be there to help decorate and such... it's just making sure the ceremony and reception run smoothly, and the clean-up afterward. I'll make sure to talk to them and to H about this possibility.

I don't know when to talk to D seriously and say my "parting words"... I'm thinking about writing him a letter, because I do better in writing than I do just saying things... I'd give him the letter a day or two before I leave, to give him time to respond or bring up the topic if he wants. I need to tell him how much I love and appreciate him, and what he's meant to me as a father.

Good grief, I'm tearing up just thinking about this... Ugh! Stupid emotions! Go away!!!

Yesterday was interesting, but fun. I spent two plus hours wandering the local mall while K and C were in a bank setting up accounts for the two of them. The reason it took so long was that the bank lady walked K through every step of dealing with her account, so she would understand it all, and it went really well. I didn't mind. I ended up wandering into a jewelry store called Harry Ritchie's and talking to a saleslady with the same name as me! She cleaned my ring for free, and it looks like new :) Anyway, as we talked about wedding bands for C and how to customize a ring for him, she told me about the company and their policies and what they offer customers, and I was extremely impressed. They take great care of the people who buy from them and the jewelry they purchase, and I decided that's where I'm getting C's ring from. I ended up browsing the ladies' wedding sets as well, and fell in love with blue diamonds. I know C has an idea of the ring he wants to create for me, and he really wants to get me a diamond, so I want it to be blue. The color is phenomenal-- it reminds me a lot of a London Blue Topaz-- and they're cheaper than your standard clear diamonds.

While browsing the rings, I found one that I absolutely fell in love with. I mean, head over heels. I know, I know, C wants to create that certain ring for me that he's got in his head, but man... this ring was just... *sigh* I dunno. I can't find the exact one online, but I found a couple that look really similar, and one even has blue diamond accents! I'd want the center stone (which wasn't actually one whole stone, but a bunch of little ones that actually looked like one super-sparkly stone. I didn't notice it wasn't one stone until about 5 minutes into examining it!) to be a blue diamond, and the rest would be fine as regular white diamonds. Here she is:

It looks most like the top ring, but the diamonds were farther down the swirls, so it was metal swirls above and below with diamond accents on the sides. The center stone was bigger, though still round, and made up of a bunch of little diamonds, and I would want blue diamonds (see bottom ring). It had the little accent stones on the sides that were kinda triangular, and looked like little leaves. It was just so simple, dainty, and gorgeous... *sigh* I told C that I found a ring I love :) Though it is expensive (or at least seems so to me!), it isn't, as far as diamond rings go (and when you think about the fact that I'll be wearing it every day for the rest of my life, it kind of puts it in perspective), plus it's usually on sale, and they also have promotions where you can get money off of your purchase in addition to in-house financing. The only problem is that for the initial purchase and creation of the ring, you need to be in the store. After that, you can pay over the phone, but the purchase needs to be in person. Aaaaand, they're only a northwest store.

Oh darn. Guess that means I have to drag C up here ;) (Like I've been planning to...) I'm going to show him the ring online, and we'll see what he says about taking an ID trip sometime this or next year.

But I overdid it yesterday, what with doing yoga and running errands and walking the mall for a couple of hours, and then giving a massage on top of that... Oh, I am feeling it today! And I had coffee yesterday... bad girl, I know. I need to be good to myself... but I felt like being good to myself yesterday was allowing myself a treat. And it sure was delicious :)

I'll be seeing H later today, and we'll be going over wedding stuff... so excited! Last night, after errands were all finished, we ate supper and were going to watch a movie but couldn't get the tv working. Instead, we all sat around and talked, and it was really good. W, J's intended, was there, and I got to know him a little better. (He was the one I massaged, after all!) Of course, the topics turned to theology, but it was cool because D got really into the conversation, and it was like I could see the old D just shining through again. It was a good feeling.

Also, while at the mall, my friend L from this area called me, and we had a really good conversation. I have a few guy friends that I can have real good convos with, like JC, and L (to my surprise!) turned out to be one of them. We talked for a good 45 minutes before I had to go because I got another call. He told me all about how he met and married his wife, who is a total sweetie, and we talked about how I met and got together with C, and we talked theology and church, and we actually believe much the same way. It was a relief to know that I'm not the only one who's studied and had experiences and come to the same conclusions! It was interesting, too, because some of his comments about convos we've had in the past and conclusions he drew from them showed me that he is actually very, very insightful, and he's basically got me pegged, even though I didn't realize it :) I also realized that I give away a lot more of my inner life than I previously thought. I'm not as inscrutable as I think that I am. Alas. lol

So it's been good already, being here, and I'm very glad I came... no matter how difficult it is to see D this way. At first, I felt like the D I knew was already dead and gone, but last night showed me that he's still in there... buried under layers of suffering. I understand how that is in a lot of ways, because the fibro had me so beaten down with fatigue and pain at one point that I didn't even realize I wasn't myself until I got on the meds that have helped buoy me back up closer to normal. For D, though, there will be none of that. At this point, the only release he will have will be death... and I almost wish it upon him.

He's in so much pain... he's so sick... I don't like seeing him suffer so. I know he wants to hang on, which is why he wanted to try the chemo, because I mean, who wants to die? Of course he wants to stick around as long as possible, to see his girls get married, to spend as much time with his wife as possible, but... I mean... he's so sick. I almost wish he'd give up, if only for his sake.

And I feel like a total traitor writing that. It's one thing to wish your enemies dead, but to wish your loved ones dead? It's a strange, strange feeling, even if it is motivated by love.

Ugh. Ugh and Argh. I'm tired of fighting back tears, and I'm tired of crying, 'cause here I go again.

Damn. I knew this was gonna be hard, I just didn't know how hard. At least when Larry died a few years ago, it was sudden. There was nothing any of us could have done. I didn't get to say goodbye, but he didn't linger, and he was the happiest he'd ever been when he went.

I'm so glad I don't live here anymore. I'd be broken beyond repair. Even now, I feel myself cracking...

Oh D... I don't want you to go, and yet I don't want you to stay if it means you have to live like this...

This? This is... yeah. I'm fairly certain that this is hell.

I just finished a novel by Joyce Meyers called The Penny.

The basic premise of the book is the story of a girl, Jenny, who lives in a very abusive household. They're the classic dysfunctional family-- a father who is verbally and physically abusive to all members of the household, and who sexually abuses the girls at night; a mother who, out of fear or from being beat down or whatever, turns a blind eye to the abuse, all of it; two daughters who are going through the same thing, yet cannot speak to each other about it, so they have this weird, tenuous need for each other that usually comes out as bickering and sullenness.

I wonder if that's what went on with K and I. Maybe she felt like she should have said or done something to stop G, but she didn't, so she failed to protect me... and so the tension enters the relationship... despite the fact that we are fiercely loyal to each other.  (And despite the fact that she's my younger sister, and I'm supposed to be the one protecting her!) She protected me many a time, as I tried to do for her. I was going to come back for her after I ran away-- I just had to make sure I had a safe place to take her to.

Anyway, Jenny finds a penny in the street, picks it up, and a chain of events is launched into motion that begins her journey of healing from the abuse, though she doesn't see it for a long while. She gets some safe people in her life. God enters her life. The pennies are like a symbol, a message from God reminding her that he loves her, that he's taking care of her and watching out for her, even though it doesn't necessarily seem like it. (Like rainbows for my family.)

 I have to say... reading that book was both good and hard. I couldn't put it down. I had to finish it.

And I understand Jenny... I understand her far too well for my own liking. Miss Shaw, as well... how she hid the pain from her own past of abuse behind a well-kept, well-mannered exterior. Perfectly groomed and poised, pleasant, yet detached. Jenny is a far more abrasive character than I ever was. Her insides are like mine, though.

And I think about my past... the memories... the things I'd forgotten... the darkness. The shame. The wishing it was just over already so he would leave my room and I could read a book and forget about everything. The "I'm asleep, I'm asleep, I'm asleep, so it can't be my fault, 'cause I'm asleep." The why is he still hitting me? The doing something "wrong" and standing in the corner for over an hour, or being forced to skip meals. The being ignored when all I want is to be loved.

I wish I could just permanently delete the files. The memory of the way his skin felt. The sound of his breathing. The helpless, seething anger when he threw things at me, and I knew I wasn't allowed to fight back, or even be fazed.

I'm pissed off, and I'm grieving, and I'm wondering, God, will I ever be able to forgive?


Will I ever not be ugly inside?


Because when someone sends those messages to you over, and over, and over again... it wears you down. Especially when you're already vulnerable, and you don't know what to believe about yourself... you don't know who you are...

You stop thinking. You just act.

You believe it.

Are they lies? Or are they reality?

Are they lies to begin with, and then they become reality?

I just want to run outside, pull my hair, pound my fists on the ground until they're bloody, and scream for the whole world to hear, "I WAS ABUSED! I WAS WRONGED! And I just want somebody to tell me that it was all a lie, that I'm actually precious, and worth protecting, and I didn't deserve it! It wasn't my fault... right?"

Tell me I'm worth protecting.

God, I need to hear this from you. Tell me you will protect me. Tell me you will treasure me. Tell me that you want me, that you actually like me. Tell me you're not just using me.

Tell me I don't have to bear the weight of my family's failure.

Please... tell me it's okay that I can't clean this up by myself, that you don't expect me to. Tell me it's okay to ask for help.

I look back now, and I realize how thoroughly ridiculous it is to let a child's room get into this state (I realize now that I was a hoarder of sorts as a child), and then demand that they clean it up in one morning, with no help, under the threat of no food until they finish. (And to do that over and over again is... madness.)

No. That is NOT right. I would never do that to my child, and I would not stand for that being done to any child I know.

So why do I accept it? Even still... I am not outraged for myself. Sad? Some. But there remains this distinct core within me that somehow feels that, if I had been better, or if I had _____, or if I had not ______, or if something something anything, then it wouldn't have happened, and I somehow deserved this, because if I were really worth protecting, someone would have done it, right?

If I were really worth protecting, God would have done something, right?

You know what, I am pissed! I'm really mad at you, God, for just standing by and watching this happen. Where were you?

If you're so almighty like you claim to be, then what the hell?!

Why didn't you DO something?

How can you just show up now, all cavalier with your promises and smooth words, and expect me to just trust you?

How can you say it's going to get better, when you could have stopped it from getting that bad?

Are you just some cosmic clean up crew?

I'm sorry. I'm sorry I'm mad. I really... I really want that whole "loving trust relationship" with you thing, I just... don't know how long it'll take me to get past the "I'm so angry I don't want anything to do with you" part.

Yet... my intense longing for a father and his approval always keeps me coming back for more.

I think our relationship is dysfunctional.

Ugh, I'm a wreck. I need sleep.

(And here I thought that I was going to end up with this great, inspiring post. I did NOT expect all those feelings to come gushing up.)

And I wonder... how did I ever get along with J and K? We're... worlds apart. No wonder there was conflict.

I'm angry with them too, oddly enough... angry that they get their perfect little world and I went through shit. Angry that K thinks she's missed out on so much, but that she has no idea that I would give ANYTHING to have had her life! Angry that J's biggest crises are comprised of grades and boys. Angry that they would be jealous that I was befriending their father. It's like a princess riding through town in her carriage, seeing a street child eating a slice of bread, and covetously snatching it because she forgot to pack a sandwich. Does the princess not realize that the street child has been hungry her whole life? Does she not realize that the piece of bread is life to that child? Does she not realize that she has a whole freaking bakery at her palace?!

Wow. Yeah. I am angry.

Good.

I've been wanting to be angry lately.

Now... what am I supposed to do with it?

I broke up with C today.

Yeah, yeah, we "weren't in a relationship", which is bologna.

It took a while, and the help of a dear friend to shatter my rose-colored haze of optimism, but I realize that... I don't belong in his world. It really hit home while I was hanging out with him and the guys playing D+D last night. We're worlds apart...

If we lived in a bubble, all would be well. We could love each other and be fine.

But we don't. And we can't.

I think my heart has imploded.

He played me this song this morning before I broke the news... said he listens to it when he has a hard time falling asleep sometimes.

It fits me now, too.

...what have I gotten myself into?

I'm not really sure how to handle this. Mom's having repressed memories surfacing now, and talking to her siblings about them... they created a sort of timeline of certain events, which triggered the memories to come forth from their murky grave. And on one hand I'm honored that Mom feels she's able to talk with me about this, but on the other hand, I'm horrified to hear what happened to her as a child. She describes the bruises that were commonplace, all the way from her armpits to her knees, the skin splitting and scabbing because of repeated beatings that layered welts over welts... my uncle being locked in a sewing closet for six weeks because of the errors in his schoolwork. (Come to find out, he's dyslexic. That's why he had such trouble with school. The beatings, the isolation... none of that helped any. Did they think it would?) I thought I went through hell. Yeah, right. My childhood was a walk in the park compared to my mom's.

My mom's dad, who was the main abuser, is dead. My gramma, who was the enabler and sometimes abusive herself (still not sure where she was on the spectrum of things) is still alive and well. When she came down with cancer, she went through chemo, and apparently lost a lot of her memory. Mom says that gramma doesn't remember any of what she was telling me this morning. She's lost it, or repressed it herself. And even Mom says that Gramma is a different person now, not who she used to be.

But that doesn't change the fact that I'm living with... that.

I've never experienced her to be abusive at all. Passive agressive, yeah. But abusive? No way! I mean, just this morning, she told me I was doing "a bang up job around the place" (i.e. keeping the place nice and clean-- we're both neat-nicks).

It's just weird.

But I got to pray with my mom. And I got to empathize with her. I didn't have all these memories crashing in on me at once like she did, and it's no wonder she's having a hard time handling it. I get that. I've been through the darkness that's so thick and deep you think it's going to eat you alive. So I shared some of my experiences with her... but I also shared the hope of God's healing. It's hard now, but it's worth it. She's seeing her counselor on Monday.

And THAT in and of itself is a miracle of God's timing. They didn't even have a counselor until last week, and that started because I had been doing counseling myself, and was able to share with R how inexpensive our insurance made it, which he didn't know.

So after I prayed with Mom, I went for a walk. I have a lot of feelings swirling inside me right now, too. Anger. Disgust. Sadness. Grief. Righteous rage. (Can I call it that? It's WAY more than indignation!) Uncertainty.

This should never, EVER happen to a child!! Dear God, why is my family so sick? Why this generational sweep of pain and hurt and dysfunction? What does this mean for me? Is there some sort of inherent flaw in our genetic code? I tell you this much-- it stops here. No child will ever, ever experience those things from me. No child, and no person. It stops here.

Sweet Jesus, please come soon. We're falling apart...

I could be watching a movie with the fam, but I know I need to process, or else I will lose myself in the swirl of activity that tomorrow will bring, and whatever insights I might have gained will be lost.

How do you force yourself to process through feelings? It's kind of like... well... like... something that doesn't work very well, that's what it's like.

By the way, I wish that I played cello. And fiddle. And piano. Those are the next 3 instruments I'm going to tackle. I've already begun piano a little bit.

Okay, focusing back on topic now...

I was just so frustrated today, so upset... it seems like all my plans and ideas are crumbling, turning to ashes... like it's all for naught.

And here's the kicker-- this is the first time I've really researched and done my "homework" and laid out a plan and saved and... tried to do it the responsible, mature, motivated way. Most things, I just kind of go with whatever opportunity presents itself and assume that's God's will.

No, I take that back-- I did the research and homework and whatnot with summer camp, too. That didn't turn out so good.

And here I am again. Maybe I should just make opportunism my modus operandi?

Let's chart this out...

My first big decision for myself was to go door to door. Research? Nope. I didn't even know what it was about except that I was selling books. How hard can that be? Hah! But that was a step towards God.

Next: Attend academy. Research? Nope. I just visited it several times as a kid, and knew that I wanted to go there. And my family friend wanted me to go, too. Another step towards God.

After that, move in with boyfriend and get a job. Bad decision, I realized later. Hmm...

Then, leave boyfriend-now-fiance and go to SOULS. Research? Nope. J talked to me, I knew that I had to get out of the situation I was in, and this was a handy out. Yet another step towards God.

When I'm about to graduate SOULS (about a month left?) and no idea where I'm going next or what I'm doing, the Idaho guys came down to interview students. They interviewed me, and I got a job a few weeks after graduation, which led me to Idaho.

I did do some research that time, to see whether I wanted Spokane, or the little country churches. I looked at the cities' websites, and I chose the country churches.

Aaaaaand... I've been here two years now. I did major homework on which summer camps to apply to, took the first one that contacted me, and... what a summer that was. (Mer.)  So that decision was a mix of the two types of decision making, really.

Then, I left camp early and decided the night that I left that I would drive out to WI for my dad. It was a great decision. I have absolutely zero regrets, and I'm so glad I did it. Talk about impulsive ;)

And now... researching and contacting schools, figuring out where I'd like to go, which schools offer what I want, etc. etc, looking for places to stay, figuring out viable options, researching scholarships and grants, filling out my FAFSA forms, and... for what?!

I talked to the financial aid lady today (finally!). It's weird, because I seem to have a semi-difficult time getting ahold of the staff at this school, whereas the school in Colorado was always so prompt... I wish this school were like that. Anyway, I finally talked to her, and realized that she had no idea that I needed to work out financial details now, because I have no money and no place to stay when I get down there. She said she'd do some figuring and call me back.

I about fell apart on the way home. It seems like everything I've tried is just not working out. The $10,000 scholarship that I thought I was guaranteed fell through. The churches I've contacted asking for a place to stay haven't contacted me back, except one. (Seriously? At least call me back to tell me, "No"!) The job I applied for hasn't contacted me, either.

As I was driving home, crying and praying, it occurred to me that perhaps God is setting the stage for something awesome. I'd really like to believe that.

I'm scared. Terrified, really. I'm scared that I'm going to go down there, only to wind up homeless. I'm afraid that I'll find out that I can't get enough money and I'll have to leave to do...???

I'm afraid that it's not going to work out. I'm afraid that I'm going to be dependent on others forever. I'm afraid of getting stranded on my way down because I only have a few hundred dollars. I'm afraid of failing. I'm afraid that I can't actually make it on my own.

I'm afraid that I'm going to be living in poverty forever, that I'll never make it out. I'm afraid that I will have to sacrifice my dreams on the altar of necessity.

I'm afraid that life will become nothing more than a vicious battle to simply survive.

I'm afraid because I have no backup plan. Everything I have is staked on this. And it seems to be falling apart.

I just feel so helpless!! Why can't I be self sufficient and independent, dammit?! And why do I still say bad words?! lol

I want so much to be consistent, stable... mature. Responsible. And yet I find myself constantly swinging from idea to idea, from thing to thing... It's like I have this conception of my ideal self, yet I cannot achieve it. And that frustrates me. And angers me. And scares me.

I don't want to be trapped in mediocrity.

I was sharing all this with Mom today, interspersed with tears, of course. How scared I am, and how frustrated, and how I have nowhere to go and I don't know what to do and why is this not working the way it's supposed to?!

She pointed out to me that I do have somewhere to go. Gma and Gpa would love to have me, if I wanted to wait a few months, or if I can't get this financial stuff straightened out in time.

I told her that the S's want me to leave. The sentiment in the statement is not quite the same as the sentiment they express, but it's pretty clear that it's time for me to move on. And January is the time they ("they" meaning C, lol) have set for me to move on.

And you know... E would love to have me work with her.

I could wait. I don't have to rush off. Going back to Y is a viable option. I don't know if the school has a spring starting date, or if I'd have to wait until fall, but... I could.

Who says I have to start in January? Nobody. And who would rag on me if I didn't? Probably just myself. Because once I say I'm going to do something, I want to do it! Right away! lol

And if I did go back... I could get a job, maybe. Like Mom said, there's always Denny's. Yuck. Actually, maybe not...

But seriously. Would I be a failure if I did not start school in January? Because that's what that voice in my head tells me... "You said you were going to start in January. So either do it, or scrap the whole idea. None of this 'wait till later' stuff. That's failure talk. Either you do it or you don't."

Who to believe? Mom sounded awfully believable while I was talking to her.

I need to pray about this some more.... and make phone calls.

I'll take L's advice and start pushing on some doors ;) As they say, the squeaky wheel gets the grease.

But, oh... I just don't know.

Sure, it's an adventure. That's one of the only things that keeps my spirits up.