Yeah, I know, I've been quite absent of late. That's partially because I don't want to wind up saying the same things over and over again, which would probably happen, and partially because I just don't have the gumption for much besides waking up, moving to couch, occasionally getting up for pain meds or bathroom or whatever food I can handle that day, managing liquids, and returning to the horizontal position.

I've started doing this thing where I'm working with a coach to try to make money from home, working online, like a go-at-your-own-pace class type thing. Selling stuff on eBay, that's what I'm working on right now. It's hard, though, really hard, when the word "energy" is a dim memory of a time gone by, and nausea stalks the streets, seeking whom it may devour. Hint: it's me. I have to force myself to sit up and try to focus and learn, and many days it just doesn't happen.

I've basically spun down into a crumpled mass of "I can't fucking DO this anymore!" and I refuse to budge. Symptoms have flared up and recruited other symptoms that I hadn't become acquainted with yet. I started doing some more research on EDS this week, but I stopped after a day or two because it's too dismal of a prospect, knowing what I'm in for. It did help me to get some ideas as to what this chronic nausea and vomiting problem might be related to, though. I'm throwing up all the time, and when I'm not throwing up I'm either so nauseous that I can't stand up or sit up or my stomach is threatening to toss the cookies. Sometimes I have a day where I'm alright, but they're getting fewer and farther between.

Don't get me wrong, there are some good things happening too. It's not all crappy. My sister sent me a pastel rainbow colored alpaca stuffed animal for Christmas, whom I have named "AlpaCapone", and he goes almost everywhere with me. My cats are a delight, generally as a rule, and my husband continues to be the thing that keeps my heart going. I have a friend that has come to mean the world to me, and she's been a breath of fresh air, being there when I don't have the energy to reach out. I've stopped interacting on social media, for the most part, because I just don't have the energy to reach out, and I don't feel like I have much to share at the moment, at least nothing that people need.

~Alpacapone in his gangster hat~

Sorry this is brief. My brain is just not wanting to flip on the "eloquent" switch, plus I'm typing away as the husband tries to sleep next to me, so I figure I should wrap things up. It's not that I want to be a downer or have a huge pity party, it's just that this is where I am right now. I found this website called themighty.com and I'm excited about it. There's a particular story I read on there the other day that was just what I needed--just read the comments where I say so!--and it helped to pull me out of my huge depressive funk by realizing that it's okay to fall down and fall apart sometimes. I'm really discouraged with the fact that I have a rare, incurable, systemic, degenerative set of diseases that makes my every waking moment a misery and will only continue to worsen as time passes. I don't know what to do with the enormity of that fact, and I don't know how I feel about it except for "angry". I'm trying to figure that out, trying to learn how to live with this. Anyway, here is the story I read that helped give me some peace: "To the Person With Chronic Illness Who Feels Like You’re Falling Behind". Fyi, the girl who wrote this also has Ehlers-Danlos Syndrome, so I know she gets it. So, yeah. That's it for me for now. I need to take some pain medication and try to sleep so I can maybe accomplish something tomorrow. I'll be back soon to vent, I promise. I need it. The words are starting to choke me from the inside.

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'm watching "Dance Moms" right now (just for background noise), and I can't believe what I'm seeing. These little girls are regularly decked out in more makeup than most women wear on a normal basis, and it just doesn't look right. The cast and crew are just setting things up for drama after drama, and these girls are caught in the cross fire. I feel so sorry for them. And there is just so much grumping, grousing, picking apart, and negativity. I would absolutely wither in such an environment, no matter what the situation. Those little girls are damn good dancers, though. I envy them their strength and vitality.

On February 6, we lost Cortes. I glanced outside just in time to see him looking up from lapping up a puddle of antifreeze that had leaked out of Corey's truck. I rushed him to the nearest vet that would take him, the first being too full and busy, but the second vet that took him in was amazing, so I'm glad we went there. They pumped his stomach and gave him charcoal, but the tests following that showed that he still had 3 times the fatal amount of antifreeze in his bloodstream, and what happens with antifreeze poisoning is that it mixes with the calcium in the cat's body and creates a kind of sticky, cloggy mess that clogs up their kidneys and induces kidney failure, which is a horribly painful and drawn out way to die. I couldn't let that happen to Cortes so I chose euthanasia, which was the right choice but horribly painful for me. I had time with him to hold him and say goodbye, I held him during the procedure, and then they gave me as much time as I needed afterward to hold him and just cry. I couldn't afford the cremation and urn and I didn't want his body to bring home and bury, so I opted for the "mass cremation" (cremated with whatever other animals and disposed of however they do it) and the clay plaque with an imprint of his forepaws with his name imprinted below the prints. They did a phenomenal job with the clay plaque, crimping the edges and making the prints and the words clear and legible. I was thrilled. I plan to paint it and hang it in the living room along with a favorite picture of Cortes in the frame given to me by a good friend specifically for that purpose. A week after Cortes's death, I received a card in the mail from the vet's office expressing their sympathy and signed by all the employees.

Corey and I are both bummed. Cortes was his favorite, and I, of course, love all of my animal babies fiercely. I don't have children, my womb refuses to house them, and the way things stand with my medications and diseases I won't bear children myself. This means that my maternal instinct is funneled into channels it might not otherwise be so present, and that means that my fur babies mean as much to me as anyone's human babies mean to me. Señor Drogo doesn't feel the same way that I do, but he cared for Cortes and misses him a lot.

About a week ago, we took in a new cat that needed a home. She's a calico, about 3 years old, such a love sponge and a purring machine. She will start purring, loudly, if I so much as start talking to her! I have a vet's appointment for her in a week because she has a really bad case of ear mites, one ear being entirely full of gross crusty brown stuff, the poor poor baby. Oh, her name is "Fancy". She was a pound kitty before the previous owners got her, and now she's in what appears to be her forever home. I have better pictures on my cell phone, but haven't been able to get them on the computer yet.

Things have calmed down, at least within me. I've had a lot of blows one after another for some time, but things seem to be slowing down and settling, at least temporarily. I have been beading more lately, trying to work up some sort of an inventory to start my Etsy store with. Just the prospect of doing something solid and with a purpose is exciting and fills me with giddiness. I miss that. Being in the house all day and frequently on the couch or in bed is really kind of dreary after a while. I want to go backpacking and antiquing and run errands and all the good old things I did before! I suppose I'll just have to think of ways to adapt them to my current physical abilities. Backpacking probably is out of the question, though, as I learned recently for a disability appeal form that I can only walk about 300 yards unassisted, and that's without carrying any weight at all. Hey, maybe someone will rig up a Bran and Hodor type situation and carry me on their back in a basket?! Hehehehe…

Besides beading, though, and being generally crafty, I'm working on another project to get my medical bills organized and keep track of how much I owe on each one. The idea is that I'll send in incremental amounts regularly rather than waiting until I have the whole amount at once, which will never happen. Ten dollars here, thirty bucks there… that much money can easily be spent on superfluous things, so why not put those bucks to good use? I'm going to use my old dry erase board calendar with the cork strip along the bottom to write out the company/office I owe money to, the balance owed, and at the bottom I'll pin the paper bills, to be discarded when the bill is paid off entirely. I think it's a good plan, one that will help me greatly. I'm more of a visual, touchy person and just having a stack of bills that I can't pay all at once has done me no good, and will continue to do me no good. (Guilty confession time: I've taken to throwing medical bills into a pile, unopened, because I just don't want to see the numbers that would simply ramp up my agitation. What I don't know can't hurt me… right? lol)

Oh yes, there's also the small matter of my oral surgery this Wednesday. I'll be put under and all three of my wisdom teeth will be removed at once because of serious impaction. (I am simply "missing" one wisdom tooth. Guess it never grew.) I'm going to have to eat nothing but soft, mushy foods for an unknown period of time, as I heal slower than the average person. The oral surgeon has seen many patients with chronic pain and autoimmune diseases, which is a relief to me, and he predicts that my healing time will probably be about double that of a normal person, which is to say three weeks to a month, possibly more. I wonder at what point I'll be able to switch from baby food type meals to a more solid diet? Well, if nothing else, at least I'll lose some more weight over this incident. I can almost guarantee it.

I'm reading The Swiss Family Robinson again, and I notice that every time I do my turns and phrases of speech alter slightly and become a little more old fashioned, as they are in the book. I'm still uncertain as to whether it's really a fictional account or true, but I don't have the heart to look it up because I'd liked to believe it's more of a survival manual than an interesting tale. Seriously, though, that family would break the bank if they played Jeopardy! It seems like they know every friggin' thing to do with nature or animals from all over the world. All. over. If I were stranded on a "desert" (I think they are using "desert" as an archaic term for "deserted", as it's really a subtropical island near the equator) I would rather have the father or the older brother with me than anyone else in the world because I believe that they would increase my chances of survival so greatly. Give the book a brief perusal; you'll see what I mean.

The next few days I intend to spend packing and preparing for a stay of a few days at my grandparent's home after my surgery, and I'd like to get some more beading done as well. I bought a bead/findings organizer last week and setting it up will be quite a chore but so worth it in the end. Lately it seems I've been doing nothing but sleeping or reading, sometimes crafting and all times petting and playing with the cats. It's not so bad of a life, what I've got going on, but still… it does get a bit monotonous and irritating after a while. I still don't know what to do with the fact that my pain is a life-long load I must bear, so for now I've tucked that thought away and out of sight. If I don't, it threatens to become overwhelming and drag me right back into the depression I have so recently escaped from.

For now though, it is, as my mom used to say, "bedtime for bonzos"! Or "Shadrach, Meshach, and Tobedwego!" (That's a joke based on the name of Daniel's companions in the Bible.)

I have been asked quite frequently this month if I'm happy about my new diagnoses, happy to know more of what's going on? That's a hard question to answer, truly, but the answer I give is kind of a yes-ish yeah sure when I'm asked. I mean, yeah, but…

The news I got is not pretty or happy or pleasant, not by any stretch of the imagination. The hypermobility, there is no treatment or cure other than palliative care, meaning that my excruciating, unmitigated pain will continue without cease or relief, most likely for the rest of my life. Not only that, but it comes with joint slippage and dislocations. Definitely debilitating. Then you have the connective tissue disease and the arthritis, both of which include pain of their own but can be treated. However, there is a distinct possibility of degeneration in time, especially with the arthritis, which is debilitating as well even if the pain is alleviated. It would be nice to have some of the pain taken care of and taken away, even if not all can be. All that, on top of the Hashimoto's and Addison's that must be closely managed if I'm to live normally or stay alive at all, the food allergies and IBS that can make my life a living hell in the blink of an eye and last for weeks at a time,  depression that sucks me into the deepest, darkest pits of blackness without warning or mercy, asthma that prevents me from hard exercise lest I suffocate on my own carbon dioxide, colitis and internal hemorrhoids that leave me doubled with agony and passing blood and bloody mucus… and by the way, do you know how scary it is to use the restroom and see great amounts of blood among your excretions?! Yeah. Bleeding internally is kinda terrifying, no matter how close to the exit it is. And among all that I still have the original fibromyalgia, which is a roller coaster ride of bullshit all on its own. (One of the theories I've read recently about the rise of the chronic illness population is that with the medical advances we have, the weak that would have died off in past times are now surviving to adulthood and bringing their illnesses with them. Looking at the list above, I really think that I would have died off, no? I mean, I barely survived birth.)

So the answer to that oft-asked question would have to be "no". No, I am not happy about these new diseases. Relieved? Yes. Vindicated? Totally. But happy? No. No, I am not fucking happy. I am oddly proud that I was right all this time, though. At the same time, I'm done. I'm so, so, so done. I've had a fever for the past I've lost count days, with the chills and exhaustion that comes with. It's been the best I can do to get most of my dishes into the kitchen sink, but forget about washing them. I've had a minuscule to zero amount of motivation for anything in what seems like forever, and I'm so sick of it! I could go on and on with the complaints, but I'm tired of things being wrong and they just are and it doesn't matter if I write about them or not. I fear I am defeated at last… though I know in my heart that it is only temporary. I will rally and return to myself, someday… but for now, I'm wiped out. I haven't the heart to muster anything but naps.

I'm considering going to my grandparent's for a few days to rest, to let them take care of me a little. I yearn for a caretaker often and heartily, someone to lighten my load a bit. It's hard enough being so damn sick, but trying to fight through the medical system and do my truncated version of daily life at the same time is one plate too many to spin it seems. Who doesn't want their mommy to smooth their hair and make them soup when they're sick? If I had a dedicated caretaker, I wouldn't' have to worry about rides so much either. I hate searching for rides when I have an appointment. It's so difficult, and I generally feel like I'm taking advantage of the goodwill of my friends. I'm worried that I'll wear out my welcome one of these days. I had a thought, though, while I finally began to do some research into the lighter aspects of arthritis (I've put off any research or dealings with any of the new diagnoses until now. I just kinda don't wanna know yet. Don't wanna deal with it. Bleh.), that maybe I'll be able to find a support group here in the area. Friends online are a lifeline to be sure, but in the flesh support is another thing entirely. It would be especially nice to find a couple of folk in my age range as well, but I think that's pushing my luck for Yuma.

So, back to being all blah and curling up with my fever and sweatpants and electric blanket and tea and movie. I've been watching both of the 300 movies tonight in keeping with my rather black mood. The blood and gore used to bother me terribly, but I've learned when to look away. Also, Corey's dark humor has rubbed off on me a bit and I find some things amusing that I didn't used to. I learn so much watching war movies with that man. I swear he's an encyclopedia of battle tactics, armor and weapons throughout the millennia. It's amazing, really. Can't wait until he is teaching all that interesting stuff to our kids.

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

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

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

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

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

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

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

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

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

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

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

"Never Surrender"

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

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

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

[Chorus]

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

[Chorus]

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

"Sick Of It"

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

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

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

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

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

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

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

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

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

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

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

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

Gotta fix this
I'm sick of it!

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

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

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

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

**Author's note: One of the new/aggravated symptoms I'm dealing with is, for lack of a better term, short term memory loss. I believe I can attribute this to the pain medication I'm on, but it does make for some interesting experiences. This post, for example, was written while I was literally falling asleep at the keyboard. It was totally coherent and even eloquent to me at the time, because I knew what I was trying to convey. The next day, when I realized that I had written a post (because I'd forgotten that I had, actually!) I came over to read it because, naturally, I couldn't remember what I'd written. I found it to be… not quite as lucid as I had thought it was. Apologies. If you can muddle through this and make sense of it, I just may hire you to be my FibroFog Interpreter. I didn't want to delete this, though, because I mean… it's my writing. A piece of myself, coherent or not. So, here it shall remain, if only as a testament to "this is your brain on drugs".**

I'm given to understand that there are many "steps" when it comes to acceptance and grieving of a chronic illness. It may not immediately seem clear as to why someone would need to "grieve" when they're clearly still alive. I mean, grieving is for when people die or you break up or something, when a relationship is lost… right? Right. However, unless you've encountered it yourself, seen it in the life of someone you know (to whatever degree of closeness), or have just thought about it quite intently, it's unlikely that anyone would understand the phenomenal amount of loss involved with a chronic illness diagnosis and the life after the diagnosis. I spoke of death just now; in a very real sense, a diagnosis of a chronic illness is both the death knell for the "old life" and the harsh squall of the newborn as a "new life" unfolds before the patient. Due to the completely unpredictable and generally misunderstood nature of chronic illnesses, though, many times that life unfolds only minutes at a time. There are no grand, sweeping vista of plans and ambitions or sweet, sleepy forests of peaceful routine followed decade by decade.

The landscape of the chronically ill and the average healthy citizen can appear deceptively similar to the casual observer. Often, the land of the ill is surveyed with a passing glance and dismissed with a nonchalant, "you don't look sick!" After all, the sun still speckles brightly along warm earth paths of smiles and laughter, mountains of various sizes and relative distances are scattered through the view, and always, always, the loud gushing streams of cool forward momentum and purpose weave and twist their way in and out of both expected and unanticipated settings. Look closer, though, and you will see troubling changes that stir up an unease within, changes that make you want to run for your life lest you be contaminated as well and your own precious world poisoned.

The straight furrows of garden plots are worn and cracked, dry with fatigue yet managing to bring forth a feeble crop. The cheerful cottages, clearly once a source of pride and sustained labor, now seem to troop sadly across verdant meadows bare of livestock. Lush banks of flowers cover crumbling masonry and low, stooped walls, draping the entire panorama in a rippling, delicate gown of every hue imaginable. The colors are a riot, but blend together to create the most intricate and exquisite of tapestries; every bloom is perfectly placed, from the single frothy Queen Anne's Lace to the tightly bunched carpet of creeping phlox, and what could have been hills barren and uneven becomes a spectacular faceted gem of pure joy.

The chronic illness world can be a harsh, ugly place. The cottages and relationships that we have so carefully labored over and constructed with our own hands through years and years of work, they often fall into some state of disrepair. Those who live in the cottages can do some of the upkeep themselves, but the true purpose of the cottages demands a synchronistic cooperation in order to truly thrive. Beyond the cottages, the near-empty fields mutely allude to the loss of hobby and gainful employment. The sweet silence of the air brings a sharp contrast to the usual sounds of looms clacking, animal noises, children squealing and squabbling; the normal sounds of a busy life have been replaced with a hollow, pealing silence that resonates down to the very bones.

The flowers though; ah, the flowers. The flowers make it all bearable, if not tolerable. The origin is unknown except to the owner of the valley, but such a rich and varied selection is found but rarely outside the landscape belonging to the chronically ill. It seems that the soil of normal lives just does not cultivate the proper atmosphere or soil in order for the plants to grow to their fullest and most luxurious. Well-groomed flower gardens can be seen among the graceful landscaping of nature itself where people have taken to cultivating particular joys and gratitudes, while others appear to be content to take theirs wild and unsolicited.

In my mind's eye, my landscape looks much like north central Idaho, or perhaps western Montana. It is rugged and choppy, coated with mountains and sheer cliffs and whitewater rivers dashing themselves ever downward. It is sparsely populated, and those that are there tend to keep to themselves and be self-sufficient-- no coddling these cottages. Practicality reigns supreme, yet nature itself inspires a veneer of beauty to soften the edges and uplift the heart. Those same rugged mountains are swathed in dark evergreen forest, underlaid with countless varieties of bush and berry and other barks. The seasons change, time inexorably marches on, and even the death that time inevitably brings wears naught but a thin, shimmering mantle, spinning and flaring in the sudden colors of Fall before the cloak is thrown aside and the naked white bones of the world come to the fore of collective consciousness.

The landscape of my illness is part beauty, part blight. Pockmarked scabs of raw gashes in the earth can be found mere steps from a tranquil, dainty pond embroidered with ferns and sweet puffing breezes. I can always find flowers to sustain me, even if it's just one, but the wanton loss, destruction, and waste that I see around me as my world crumbles… it sears my soul with a thousand putrid colors that I dare not do anything with but swallow. Every day is another Pandora's box: the lid is cracked open by morning light, the evils escape and howl through the welkin to begin their outrage anew, and Pandora slams the lid shut tight, having only hope left to herself.

The thoughts and feelings of such a continuous cycle of dismay and disappointment take a heavy toll, and the words do not come easy. They boil and roll around inside of my head and my heart, percolating all the way down to my fingertips… but at the last minute my heavy heart shakes her head and says it's too much, too much, and we're all (all of us pieces parts together) too tired to argue so we cover our eyes and turn slightly to the left, hoping that the results will scatter in the sweetly sweeping breeze. They never do, and I grow heavier and heavier as I wait for the words to finally squeeze themselves from my very pores and splash across the page. I wait for the words to write themselves, to unwrap the weighted intensity of themselves and float out into the world, because I don't understand them while they are inside of me, not really, and if I can read what they have to say about themselves then I just might be able to make some sense out of all of this. My landscape is beautiful, in its own way, but it is also terribly confusing and wickedly deceptive, and I am afraid that someday I may drown in my own confidence.

(For a glossary of "characters" and their nicknames, check here.)

I've been putting this post off for a while, because every time I think about sitting down and typing it all out, I'm just overwhelmed with the effort that it will take and I figure I'll do something easier. Did you know it takes energy to feel things, and more energy than that to actually process them or record them? Yup. Lots of energy, both emotional and mental, and most times it's easier to just say, "Ehhhh… I think I'll go look at funny pictures of cats, instead."

However.

I do need to get this all out there, because negative thoughts in my brain are like a poison that infiltrate my daily workings without my really being aware of it, and they taint my reality. So it is important to me to get it all out there, outside of me… where I can evaluate it more intellectually, without the ineffectual whirrings and endless cyclings of my thought processes. I've been trying to get it out, verbally, with the Dragon, but that hasn't been going so well. I've been very moody to boot, because I've got all these fears and feels and crazy thoughts all just tumbling around in my head and I'm desperate for consolation and affirmation and someone to set me straight and tell me that it's all gonna be okay and that I'm wrong and I'm amazing and all that jazz… but that is definitely not Drogo's strong point. It's okay. I know who I married, and while I may be frustrated by it at times I have acknowledged from the get-go that affirmations are really just not something he does well. But since he's my husband and my mate, I instinctively look to him to fill my needs (especially as he's the one around most often), but I realized recently that I've been asking too much of him, asking him to fill a thousand different roles that can and should be filled by a myriad of people. No one person can be everything to another person, and it's silly and futile to expect that… but I kinda have been.

It doesn't help that I'm a shut-in, so unless people come to me… nothing is going on. Also, it takes energy to reach out and ask for help, and often it doesn't feel worth the effort. I want people to just know that I need help, and that I need it all. the. time. and to just kind of… do things that help. I'm tired of asking for help, if that makes sense. I just want to be taken care of. I'm tired. So tired. Tired of phone calls and doctor's appointments and medical bills and futile attempts at keeping the house tidy and being stuck at home every single day and feeling like I should be doing so much more and better when really all I want to do is curl up and hibernate and have someone else come deal with my life for me so I can focus on just being sick and hopefully getting better. (Essentially? I just want to be a house cat.)

Right. So there's all that. But anyway, I realized that the glories of the internet mean that I can reach out to my friends that are scattered across the country and dump on them instead of my husband! Genius, right? So that's kind of my plan… is to spread my woes a little more thinly and evenly across the network of "people who give two shits about me" and ease some of the tension that I've introduced into my marriage. Being married with (and to someone with) a chronic illness is hard. He's doing an admirable job. I just have a ton of feels that I don't know how to deal with and neither does he and so we're left with a bunch of elephants in the room, but if you've seen my living room then you know that it's barely big enough for the furniture we have in there much less a bunch of elephants and so it's pretty crowded and we're both on edge.

The other day we were in line at the bank and I started talking about how I feel and the negative thoughts rattling around in my head, but Drogo told me to stop talking and wait in line quietly. Why? Because what I was saying was bad and not true and he didn't feel that I should be giving power to those thoughts by speaking them as though they're reality. He told me to "write about it". So here I am. But see, the thing is, I already wrote about it the other day to Rose, so I'm going to do some copy-pasting here in a minute… but first I want to bring up a couple of things that I haven't really discussed with anyone, save Drogo (briefly) and one or two of my fibro friends (again, briefly).

I'm terrified.

That's no secret, but the thing is that there are many things I'm terrified about. The one that I haven't really voiced to many people yet is this: I'm so, so, so afraid that there's nothing else wrong with me, that it's "just fibro", and that there's nothing fixable or treatable about my situation. I've tried all the fibro meds, and they did worse than nothing. I'm still on gabapentin, a fairly high dose, but my pain is still at high levels most of the time. I stretch and exercise a little every day, I eat as healthy and simply as I can, I hydrate, I tried yoga (which I still do because I love it and it feels awesome sometimes), I tried acupuncture and massage and Kangen water and yes I take B vitamins and my vitamin D levels are good and so are all my other mineral levels… I do all the right things, but I am still getting worse and worse… and if it's "just fibro"… then it seems there's nothing I can do about it but hang on for the continued decline and hope that I die before it gets too terribly miserable. (I keep saying, "I don't know how it could get worse… how could I possibly feel worse than this on a regular basis?" And then it happens, and then I'm sad. And round and round the cycle goes.)

I'm scared that we'll never find out what is really wrong with me and I'm just going to get sicker and sicker as Drogo stands by, watching helplessly.

I'm scared that I'm going to get worse and worse and worse until I'm basically just a sad piece of meat with a pretty face that can't even go to the bathroom by herself.

And then there's the existential crisis part of things… and this is where I'm going to copy and paste from my conversation with Rose, because why explain things twice when the first time was eloquent enough?

"Speaking of rehashing stuff… I've been having a very hard time lately with my sickness and disability.

Maybe because I got the news it's not lupus… because now I STILL have no answers… and the thing that seemed to fit so well (albeit a horrible fate) just isn't, and I don't know what it is and I'm really afraid that it's all just in my head you know? That, like, somehow I'm making myself sick... And I'd stop it if I could, but I don't know HOW.

And I'm afraid that deep down I don't really want to stop it because this kind of gives me a free pass out of life, you know? And responsibilities.

Blah. I dunno. It's just so HARD to be sick all the time and not know WHY and not know how to FIX it and for even the meds that are supposed to help to not really be effective… and to wonder if I'm just going to keep going downhill until I eventually die of some mysterious cause?

And I'm just like… what kind of a wife am I? Kahl Drogo married me expecting to have a partner in life, to have babies and make a family… and he got THIS.

I feel so LOST. Especially now that I can't even do the healing journey anymore. Like, what's my purpose for even being here? What is the point of my life? What good am I? I guess it comes down to intrinsic self-worth. Now that I CAN'T do anything productive, really… who am I? What am I worth? What can I contribute to the world?

“It must be really tough to not feel like you're contributing to the world”

Yes, it is. I don't know what to do with myself besides sleep… I've started doing at least 1 run through of Sun Salutation (a yoga practice) a day, and that makes me feel a little better about myself… like I'm being more proactive about my health… and my weight.

I've gained more weight. I'm trying *REALLY* hard to see myself as a good, valuable, lovable person, but… I accomplish very little, I look different than I used to and how I feel that I should.. I basically feel like a failure as a human being and a woman.

Like, by the time Drogo gets home I'm usually feeling so terrible that we don't even have sex hardly at all anymore. And I think that hits me the hardest. I know it's because he cares about my physical health and doesn't want to make me feel worse (and sex often does have a backlash on me and I kinda flare), but I have a hard time not believing that it's not because I'm now an unattractive, heavy person.

Oh Rose… I'm just so lost right now. It's so HARD. LIfe is just HARD, and I can't understand why...

I have SO MUCH to offer the world, and I'm trapped by my body and my circumstances and it's NOT FAIR.

Like, why me? Why not G? Why not people who do terrible things?

I've only ever kicked a kitten on accident, I swear!

And I'm just so lonely...

Oh Rose… life is just so hard.

And I don't know what i can do about it, if anything.

At least I don't actually believe the person who told me that I got sick because I left God.

It's just really hard to find reasons to keep trying.. to keep waking up every day… to keep living.

And that terrifies me.

And what scares me the most is that, based on personal experience… I can only expect this to get worse. How much worse can it get? I can never imagine how I can feel worse, but then it comes and I do...

How long am I going to have to live like this? The rest of my life? Is my health just going to keep deteriorating for unknown reasons for years and years until I'm basically a pain-wracked vegetable?

Rose, I want to have kids! I want to grow a garden. I want to hike the Grand Canyon rim to rim. I want to travel to Italy with my babies and feed them awesome food and show them old buildings and wonderful paintings. I want to make my family pancakes on the weekends and keep the house clean so my husband WANTS to come home to his happy family… I want… I want so much.

I just… I don't understand. And that's okay. I know I don't have to. I just wish that I had something to cling to...

Even when I was a Christian...

there wasn't much hope for me, sadly.

Just the fear of what would happen if I didn't do it all right. I know now that that's not the way.

Someday I'll find it.

But I still believe in God… in higher purposes…

but I just don't see how my being unable to contribute to the world serves a higher purpose.

So anyway… now that we've hashed… lol. I'm just having a hard time lately. Drogo knows, he understands, and he's been good about it. Really good.

We talked about how I'm less physically capable than I was before, as much as I hate to admit it, and I need help keeping the house somewhat tidy since that is VERY important to me. (And let's face it… I have to look at it all day lol)

So now he is in charge of sweeping the floor every other day or so. And he also *finally* got on the ball about the water leak in the front yard and we went to Lowes the other day and got a rake and a shovel.

Tomorrow he will probably get some of the guys over here to help, but he's going to dig up the front yard and see where the leak is coming from and fix it. It's been a month or two in the "putting off" phase lol"

And that's where I am. I'm scared, I'm lonely, I'm overwhelmed, I'm really sick… and I'm so tired. Tired of fighting. Tired of having to fight, each and every day for… for what? I'm lost. I'm lost and lonely and fighting to feel like a decent, worthwhile human being.

And you know what else? I didn't mention this to Rose, but I'm angry. I'm very angry. I'm angry that I've been "struck down" and so many other people are free to do as they please with no physical ramifications and they feel fine and they can go about their lives and work and have fun and raise families and I can't and I don't know why and it's not fair because I'd be so amazing at all of those things!! I'm angry because the Dragon has the physical capabilities to do anything he wants… but he doesn't. I mean, he does do what he wants, but he doesn't do what I would do if I were to have his health. I'm angry that he gets to be healthy and I don't, angry that he is healthy and chooses to put stuff off anyway, angry that he's fine physically and he doesn't automatically step in and take care of me… angry that I have to ask so hard for what I need when he can so easily provide it… angry that, after months and months of asking, NO ONE in my circle of healthy friends has stepped up and helped me straighten up my goddamn craft room!!

I'm furious that I'm at the mercy of everyone around me, and it doesn't feel like people really understand that or care as much as I'd like and need them to. I'm furious at how helpless I am, how lonely I am, and how I'm powerless to do anything about it when I used to be such a powerhouse of getting stuff done and helping people and being there for others…

People I know keep telling me, "Oh yeah, call me when you feel better and we'll get together!" Folks, it's not happening. I pretty much don't ever "feel better". I have about three modes: feeling bad/poorly and worn out; feeling awful/exhausted/all I can do is sleep; Please Kill Me, You Would Be Doing Me A Mercy. So if you want to see me, you have to come to me. Come pick me up, take me someplace. Call first, see if I'm sleeping or feeling abysmal, and if I'm not I'll probably come with you as long as you are the one making the effort to drive, make plans, etc. I go with Drogo on errands on the weekends, even if I'm feeling really gross, just because I want to spend time with him and that's my one chance during the week to be out and about. I may drive to and from a doctor's appointment some time during the week, but that doesn't mean I'm "out and about". I'm trying to scrape together enough energy to make it there, get through my appointment, and make it back home safely so I can collapse on the couch or into bed.

If you miss me… show me. Come to me, because I can't come to you. A few people do. But not most of them. And that both angers and completely engulfs me in grief. I've had friends tell me, "You're isolating yourself. That's not good. You need to get out and do stuff again; get involved." Oh, I would if I could. Maybe I am isolating… but not by choice. And I'm furious about that.

So please, those reading… feel free to comment with some affirmations. God knows I could use it right now. My body always feels like junk, but it's hard to have your heart and soul feeling gross, too.

Well as it turns out, I didn't need to blog through my thoughts about what's going down with my honey. I just needed a good listening ear, sympathetic pats on the arm, and some words of sense that, yes, I already knew but needed to hear from another person. Most of my issues had to do with my being sicker than ever and wanting/needing more support from C in that regard. Mostly because I'm terrified and scared and lonely and overwhelmed. He stepped up admirably, and some solutions have been put forth that I find most satisfactory. Probably more on that later.

Also, the two M's are both making plans to vacate the premises within the next 6 months-ish. I am not pleased about this. However happy I am that they are moving on with their lives and getting out of this dead end town and pursuing their dreams and yada yada yada… I'm an inherently selfish person, and they are like, 8/10 of my support network here. They are, generally speaking, my rides places, my listening ears, my open hearts and arms, my dose of laughter when I don't feel like laughing and definitely when I do, my bawdy joke bandy-ers, and quest companions to both C and I in DnD and Magic. Whatever will I do without them? Just the thought makes me wilt inside. *sigh* But just because I'm settled here, likely for life, doesn't mean that others have to be chained here to suit my needs. It's just… why do all my good friends have to be at a distance?! J is all the way across the country, J and K and H are a full 24 hours' drive north, and the C family is hours north even of them… J and R are a state east of my family up north, my mom and the kids are all the way across the country as well, L is as far across the country as you can get from here (and is stealing M from me, that bitch! Kidding.), and E is too busy to come see me at all. If I'm not working with her I just don't see her, and we all know I don't leave the house any more.

My life is lonely. So lonely. That's part of what I was having problems with with C, is the sheer loneliness of my existence. Well, not the loneliness, but the inescapability of it all. He can comfort me and then go off and play games with B or D on the comp, but I'm stuck feeling awful. All day. Every day. It traps me, pins me to the couch or the bed, and there's nothing I can do about it that I'm not already doing. And who wants to ask people to come spend time with that?

How do I make new friends when these ones leave? They are taking pieces of my heart… but how do I find new people to fill the voids they will leave behind? It's not so simple for someone who is house bound, bed bound… Yes, I have my internet friends, but sometimes you just need someone to come over and be here with you, like M was for me last night. I'm happy for them, I really am, but I feel terribly selfish that this constitutes a personal crisis on my end of things.

Why do I have to be so all alone?

I guess it's a pity party. Why me? What did I ever do to deserve this? And I'm terrified, y'all. I'm so, so, so scared that this is my life, forever, for always… that I'll never get to really live life, not the way that I had always intended to. I won't get to travel. I won't get to work. I won't get to help people. I won't get to perform music. I won't get to raise a family. All of the talents and skills that I have are going to waste. My potential is withering like a sick plant because the body it is rooted in is inhospitable, toxic.

I realized the other day that, if I die (whether it's from natural causes, foul play, an accident, or by my own hand), C will be totally lost. It will destroy him. Do you know what it's like to basically be someone's reason for living? It's incredibly flattering, and it fills you with a sense of self-worth like none other. I mean, I'm his reason for living in a totally healthy kind of way, as in I'm his "true love" and I fill his life with meaning and joy, etc. etc. But I also feel bad because what kind of a life can I give him when I'm broken like this? He deserves so much more… Hell, I deserve so much more. We've had to deal with more in our first year of marriage than most people do in ten. I may be what gives his life meaning and dimension, as would the family that we someday hope to create, but… he kind of got gipped, I think.

I'm sorry. It just hits me sometimes… how sad I am about everything. I mean, I am such a bright, talented young woman. I am. But it seems like every single thing that I was, that I was capable of, is being systematically stripped away by this cocktail of sicknesses. My mental capacity and acuity that I was so proud of is falling by the wayside as forgetfulness and cognitive fog dominate my mental landscape. Often I have conversations of late that, later, I cannot tell whether they were reality or a dream unless there is some physical marker or transcript left behind. My vocabulary and spelling has taken a sharp decline, and I frequently struggle to find the "right" word, one that I know very well but cannot seem to access. I lose the names for commonplace things and events. The events of my own past are shrouded in mystery, lost to the gaping, fuzzy holes that have sprouted in my memory banks. It feels like my brain is made of swiss cheese. M remembers more about my life than I do because I've blogged it and he's read every single post, plus the events that he's actually been there for. J remembers more about my SOULS years than I do, more about our conversations… it's just frustrating to feel like a spectator to your own life.

All the things that I considered to be me… they're gone. Inaccessible. Stripped away, dulled down, tattered fragments. Who am I? What's the use of my even being here? At least I can still write, most of the time. My hands aren't that bad, not on a consistent basis. (Am I jinxing myself here? Ugh.)

It's just… it's just a pity party. An identity crisis. A sadness at losing two of my best friends to distance and the inevitable increase in isolation that will come with it.

On a completely different and random note, I watched Frozen yesterday, and it. is. awesome. A must-see. It's more musical than I expected, but it's very well done. Some of the songs get stuck in your head very firmly, such as "Let It Go". It's a short number, but powerful. I really like it. Here's the original song, and then here's The Piano Guys' interpretation of it, which is equally amazing.

What is it about death that makes us grieve? It can't be any kind of concern for the well-being of the one who passed away… Well, ok, maybe it can if you believe in hell and heaven and those kinds of things. But really, they, the deceased, are done. They aren't hurting, laughing, crying, missing you… any of those things. In the case of my beloved Chemo Princess, she's not sick any longer. There is no more fight to endure.

I think grieving is a selfish thing. It's not about them, it's about us. How much we will miss the person, how we feel cheated and robbed of the opportunity to build further bonds and create connections with that person… but that's okay. I mean, we all know it is so unhealthy to lose someone and not grieve. Our lives are pretty inherently selfish, anyway, no matter how selfless we try to be. Even the act of losing oneself in service to God is a very gratifying act for the individual. Those who indulge in self-flagellation to make up for supposed wrongs or to score points with God do so out of a motivation of self… a desire for security, eternal or temporary.

Then again, maybe that's why death is so hard. We opened up our selfish little spheres and brought someone else in. We connected with them, we made ourselves uncomfortable for them at times, we let our lives be about something other than us… and now that's gone. Now we're just a little more selfish than we were… or are we? Does it take a living person to form a connection? Does that connection just vanish once the person is no longer breathing, once the heartbeat stops? I don't know. I don't think so, though… Although no further connections can be made, really, death cannot erase what was. As long as one of you is alive and remembering, the connection stays.

Memories. A way to live on after dying. And what a fragile place to live… memories are so delicate, subject to change and repression and fabrication… But isn't it strange that you can make new memories with someone who doesn't live any longer? I know J created a set of new memories with her father D at her wedding, even though he had been gone for months. But she brought him into the event, and there he was. The plant that I brought home from his memorial… it thrives and blooms like nobody's business. I still have that connection to D with his plant, but he doesn't know it. I do. I am making memories with… a plant… but also with D, because I have connected it to him in my mind, therefore he is still a part of my life.

Our minds are strange places. So are the plains of our soul, littered with emotions, the topography constantly changing. You could get lost inside yourself and never make it back out.

It might be pretty plain by now that the Chemo Princess hung up her wand and tiara. Last night, in fact. I felt no disturbance of the Force, no sudden sadness… but I do today. I grieve, knowing that we will make no new memories together. Knowing that her husband no longer has a wife and her children no longer have a mother… at least, not one that can interact with them any longer. I rejoice because she isn't sick anymore. I rejoice that she is done with pain. I rejoice that she fought hard and well and no longer has to be a warrior. But I also grieve… because she was the warrior I looked to for strength. And if she's gone, how will I keep fighting? I am also feeling some twinges of anger. Yes, I am angry… not that she is gone, but that she is gone and I am still here and sick and have to keep fighting for I don't know what reason… simply because those around me would be sad if I died? What a reason to fight… it's both laughable and honorable. I am angry because she gets relief and I don't. I am angry because this is the second amazing human being with SO MUCH to contribute to the world that has been lost to cancer inside of a year out of those that I love. I am angry because she had a specific enemy to fight--cancer--and I don't.

She and I were kindred spirits. Hippies, lover of good music, theater, sparkly things, tie dye, gypsy wagons… and now I must carry on alone. I have lost a comrade, a mentor, a friend… and I am grieving.

Even in the midst of her battle, she is beautiful.

The family's message of love and support for the Chemo Princess about a year ago.

Sometimes it all just comes crashing down on you and you just need to cry. At least, that's how it is for me. Funny thing is, C has this freaky sixth sense and somehow always just knows when I'm crying, no matter how quiet I think I'm being. And he always comes to find me. Once or twice I've been crying while he's asleep and he woke up to wrap his arms around me and cuddle me. He didn't remember it the next day, though, which I find amusing.

So I was crying in the shower/bathtub in the wee hours of the morning because I couldn't sleep due to so. much. pain., and because I was just so frustrated with my health and how out of control I am of so many things (all traceable to the fact that my health has gone down the crapper and there's nothing I can do about that beyond what I'm already doing) and I hate that I'm gaining weight and can't do diddly squat about it and I'm terrified that C will no longer find me attractive and will be unhappy in our marriage and we'll both just be sad and upset and live these lame lives because I'm sick and fat and sad. I know, I know… silly, right? But when you're hurting very badly and it all just seems so frustrating and unfair, logic seems to step outside for some fresh air and a cigarette break.

I got to thinking, though, as I was sniveling away in the tub, that my appearance is so not all there is to me. I thought about my friends and all the good they see in me, and how they're not friends with me because of my rocking cleavage (although that does help, so I'm told) or my fabulous cheekbones. I started to wonder, what would I think about myself if I were someone else meeting me for the first time or getting to know me?

Here's something a new friend of mine sent to me via a private message on Fb. (I hope she doesn't mind my sharing!)
"I just want to tell you that you're absolutely stunning! Your positive energy and the care I can see you have in you for others. I admire it don't pay attention to the numbers on a scale or douchey doctors! It pains me knowing they don't know what's wrong with someone so kind who doesn't deserve all the mayhem your body is putting you through! Keep a smile on you face because someone is always paying attention to it < 3"

If I were getting to know me, I think this is what I would think. I would think that this person is…

• Funny. She laughs a lot and likes to laugh with others, not at them. If something can be made into a joke, she'll go for it, and she often finds little humors in every day things.
• Smart. She is well spoken, well written, has a large vocabulary, and "has a mind like a trap" according to D. She likes to collect obscure tidbits of knowledge and is fascinated by etymology.
• Kind.
• Giving. She loves to give to others in whatever capacity she can, however little it is.
• Compassionate.
• Stubborn.
• Creative.
• Strong and determined. It takes a special kind of person to withstand those levels of pain and still be able to laugh, smile, and care about other people.
• Ambitious. She has big plans for her life and making the world a better place.
• Talkative. Especially during movies.
• Neat and tidy.
• Sensual. Takes pleasure in the signals received by her senses and in things that bring physical pleasure.
• Has a large, bright smile.
• Thoughtful.
• Skilled at many things. Writing, cooking, creating, interpersonal relationships, attracting and entertaining small children, etc.
• Wise. An old soul.
• Open to growth and learning/Teachable. All this, despite being stubborn.
• Emotional. This is not a weakness, and not a shame.
• Highly relational.
• A nature lover.
• Persistent.
• A lover of the aesthetically pleasing. This goes hand in hand with "sensual".
• Exuberant. Often described as "vivacious", "vibrant", and "bubbly".
• Honest. Hopefully tactful as well.
• Committed.
• Good work ethic.
• Sensitive.
• Loving.
• Encouraging.
• A bit clumsy. Minor injuries are inevitable.
• Responsible.
• Too hard on herself.
• Insecure.
• Authentic.
• Eloquent.
• Adventurous.
• Loyal.

Frankly, this sounds like the kind of person that I'd want to be around, and that I'd want in my life in a big way. Like, she sounds amazing…and none of those qualities and quirks and personality traits that make her amazing have anything to do with appearance. None of them. If I knew a person like this (and I do, actually!), they could be "ugly" according to society's current standard of beauty…but they would still be a desirable person. They would radiate an irresistible quality that would make them attractive on such a deep level that the superficial physical traits would resolve themselves into a beauty of their own. Think about it. If someone is just so wonderful and lovely from the inside out, you find things about them that are attractive, do you not? One day while you are sharing a hilarious joke, you notice the curve of their lips and the slight dimple to one side. As they look deep into your eyes while sharing your pain, you notice the rich and intense color that is only enhanced by the sheen of their sympathetic tears. During a hug, you notice the strength of the muscles rippling in their back, the graceful taper of their fingers and the suppleness of wrist as they hold your hand.

People can be beautiful aesthetically, but a flat, displeasing, or grating personhood will strip them of all attractiveness. All that is left is a lovely shell. Useless. That is not me. My aesthetic beauty has changed, to be sure. I know that I am still attractive, but I do not align so closely anymore with the standard of beauty that is vaunted in our culture at this point. I need to come to terms with that, and to realize that it really is not the most important thing. As I look at the list above…what I would see upon meeting myself, getting to know myself…I find myself very attractive indeed. Or rather, I would if I saw those same things in someone else. It is still so hard to be friends with myself! Step by step, though… I'll get there. Why? Because I'm persistent, and loving, and committed, and kind, and...