So it's been a while! After a while, news builds up and becomes all the newsier, meaning that I'm really doing everyone a favor by waiting a long time in between posts to make sure that I actually have something to talk about. The problem is that life just keeps happening, no matter whether I'm writing or not, and as it all builds up and builds up the thought of writing about it becomes more and more exhausting until I've totally talked myself out of it! Or sometimes I'll talk myself into it, but forget the most important parts lol.

So what's been going on with me? Well, I saw the head doctors, both of 'em (neurologist and psychiatrist) and I'm trying out two new meds. The one from the head shrinker is a mood stabilizer for Mood Disorder Not Otherwise Specified (because I'm too complex to just label with bipolar or manic-depression, of course!) and it has the potential to make me quite depressed. I've been feeling that for sure lately, though not entirely certain it's med related. I was having problems with depression at least a week before I saw the psych, and it only got worse for a while there but it feels like it's easing up some. Now I'm struggling with sleep problems. This could be related to an interplay between the new psych med and the mild sedative from the neurologist to keep me from twitching, but for a few days at a stretch now and then, and for past several days right now, it seems that I can't stay asleep but I can't stay awake either. The result is a groggy, drowsy, constantly nodding off lady who wakes up to find herself doing random things or finishing sentences that make no sense at all and have no bearing on what's happening around her. I'll have a thought process going on that is much like the thought processes you have in dreams, so very disjointed and unrelated to reality, but I'll come back and "wake up" halfway through or right at the end and say the last part out loud… but realize as I'm saying it that it's thoroughly nonsensical. I was talking to Bob Cat earlier today before hopping in an Epsom bath for my legs and was saying something about how it wasn't going to happen until I'd swallowed enough jade. It made perfect sense until I woke up at the jade part and finished my sentence, with a mental image of myself downing handfuls of jade beads like they were prescription pills! Crazy.

So there's that, and I feel like I'm going crazy and my days are just a muddle of nonsense, but when I'm "sober" I'm doing quite well. There's a storm front that moved through last night and today and I am definitely feeling it! I'm taking my regular strong pain killers, plus a couple extra (since I now have that luxury when needed), and drinking an ale now and then to help give the pills some "oomph". I know you're totally not supposed to do that, but even with the really strong pain meds I'm at "take me to the Emergency Room" pain levels, which is saying something. Can you imagine where I'd be at should I not have the good medication that I finally have? I'd be done for.

I still think about the last few months before I found this pain doctor, and how excruciating they were, and how I was honestly dying. My body was under so much stress from the unceasing, incredibly high levels of pain and other symptoms that my vital strength was just… slipping away. Fading. My organs were shutting down, bit by bit. Blood tests tell me that the functioning is good, so I'm happy about that. I'm mostly happy to not feel like I'm fading away, to feel like even though I'm still sick and being "attacked by gremlins" (as we've decided to euphemize the situation) and that won't likely change in the course of my life that I can still participate and be a real person, not just a fading ghost or a memory of the friend someone used to have.

I have had some interesting new health news from the past few weeks of dr's appts, and that is that I have a double stranded DNA, whatever that means. I guess I have to do some more research on that one and what it can mean, but one of my lupie friends assures me that it can mean any number of things. Then there's the whole Mood Disorder thing; that was a bit of a surprise! All of the doctors and specialists I've seen in the past couple of weeks, though, have totally and completely supported my EDS theory and my work towards going to Tucson to see the Rheumatology Department there for a diagnosis, if possible. The pain doc brought up another possibility, due to my "testing positive" for Lupus again (from blood tests done just last month), and that is arthritic lupus, rather than the kind that gets in there and destroys your organs and whatnot. He is seeing more of an arthritic type of involvement with the pain than simple fibromyalgia can account for, so we'll see. I have been dealing with a very strong and potent case of pitting edema in my lower legs, ankles, and feet as well as intermittently in my hands and forearms, but I have a doctor's appointment next week to see if that's of any concern at all. 

I started physical therapy yesterday, and I can tell that it's going to be grueling but beneficial. I'll have to keep strong boundaries with my therapists and not completely destroy myself trying to please them, as I have energy barriers that most patients don't have to deal with I think, but my therapist is very understanding and good to work with, so I should be fine. We'll be focusing on my back, and also on exercises to help me lose the weight that I've gained this past year from the meds, improper diet, and a sedentary lifestyle. They will be very valuable, as I'm hard pressed to find exercise that are effective yet low impact and considerate of my physical de-conditioning. I realized during my evaluation with my therapist that I'm really a lot weaker than I've ever been.

Oh, one more "exciting" thing that happened is that my disability claim was denied. This was rather expected, as the odds of getting approved the first time through are notoriously low, but I was hoping that we might be one of the lucky ones. The "Tiara Fund" fundraiser that I started has really really helped to take some of the immediate financial pressure off of us that we were facing, and so has the monthly couple-of-hundred from BioDad, but honestly the financial difficulties haven't eased up at all. If anything, they've increased since my doctors keep adding more and more specialists to my treatment team, and while that's a good thing I just don't have the money for all of these appointment copays and the bills that follow after and the prescriptions I need to get by!  Just looking at the funds raised is kind of laughable, because what difference is $400 going to make in the grand scheme of things? And yet… it lifted a heavy burden from the Robot's mind because we were not relying solely on his paycheck for basic living expenses and medical funds. He makes enough to keep us in house and home, but that's it. If something unexpected happens, or if I need some money for medical stuff, that's a straw that'll break our little glass camel's back. Don't feel sorry for us-- we're doing just fine, and there are plenty of folks who have it much tougher than we do, I know that. It just does get tough sometimes, living with the constant stress of "how in the world am I going to pay for this?!", especially when the "this" is necessary medical help.

Anyway, enough of medical and financial woes! Exciting stuff, exciting stuff… this is getting hard to do, as I'm still in that "drifty" state where I keep nodding off to sleep in the middle of typing. It makes my words a little unpredictable in spelling, and also the content of my thoughts a little outrageous. That last sentence, for example, almost came out as "It makes my outfits a little unpredictable, but they benefit from it in the long run." I had an image of this radical blue tiger stripe tie dye shirt-dress that I was wearing instead of my usual more boring clothes, and I was genuinely excited for a moment about opening up the package and wearing it for a minute… until I realized it wasn't real and that I was supposed to be talking about words. Gaaah! Focus, woman, focus!

I have a massage in just a few hours, which can't come soon enough, as the weather that passed over brought me to the ground with pain and swelling in my legs. I tried to get Drogo to rub my feet, ankles. and lower legs, and he did so briefly and reluctantly, but he really dislikes massaging. It's like pulling teeth to get him to rub my back or feet or something. Doesn't matter that I could really, really use it or that he could be "fixing the problem" as he so loves and is deeply motivated to do, he just doesn't like it and is bored by it and so I go massage-less most of the time. I often wake myself in the night with my arms lifted above my head, massaging and stroking my hands and forearms, or my face and head and neck. It's kind of weird, but whatever. I'll get by. I always do.

I'm seriously flagging here, so I'll wrap things up by sharing the most adorable thing EVER! My friend the Artist went to a Comic Con  a few months back, and I was super super jealous because she got to meet the most amaaaaaazing people within the geek culture and see the coolest stuff, etc. etc. etc. So she paid to have an artwork commissioned for the Robot and I, but it's taken this entire time for the artist to get around to it I guess. Today she posted it on my Facebook wall, and she had some really neat things to say about it in the conversation we had around the picture itself. Another friend of mine also commented on our marriage in a very positive way, and it was very encouraging since I've been feeling a little discouraged about our relationship lately (a lot of it fueled by chronic stress, and insecurity over my appearance now that I've gained so much weight). We even had a "talk" on Sunday, which was mostly me talking at him and explaining what I was feeling and why and citing some examples and him explaining his perspective and me reordering and reorganizing my thoughts around this new information and realizing that we're actually okay after all and it was all fine and I was just breaking down under the stress is all but he didn't mind because he's awesome like that and just bore up under it patiently like he does and walked me through it. I could wish that he were more passionate in daily life, more demonstrative of deep affection and emotional displays, but it is the solid bearing up and the refusal to be flapped and bothered and moved out of place that signals his love to me, strong and sure as a beacon. I just sometimes lose sight of his particular version of affection and passion, start comparing our relationship to "others"… and let me tell you something: that doesn't work. Ever. Even if I were healthy and we did have the sunshine and rainbows that we so long for (because we've walked in a miserable, cold, rainy mist for so long now!), every relationship is different and looks different and functions differently, and my main concern ought to be "Are we healthy? Are we okay with us?" Because that's what's important. It's not important whether or not he does _____ like so and so does (although that would be super cute and sweet and nice), it's important that he is still here, and not going anywhere, and that he still thinks I'm pretty and that he believes that I can still do things but he also doesn't hold any illusions about what I can no longer do and he keeps me from sailing off of a cliff with the best of intentions to carry me forward. The picture that my friend commissioned, it's… well, it's perfect. It's us. And seeing it, reading her description of her hopes for its creation, really helped to remind me that what we have is perfect for us, and we have made no mistake in coming together and creating a life that is a blend of the two of us. We have done just what we needed to, and that's beautiful. We're beautiful. And seeing us from an outside perspective did a little something inside of me to push away some of the stress and make a cozy little space where I could just nestle down and really see and appreciate the beauty of what and who we are as a couple.

Without further ado (because I'm totally rambling now), I give you… the Robot and his Lady!

My friend the Artist (not the artist who drew this), says, "I know the one thing I really wanted out of this, was to show that through the ups and downs of stressing over bills, you battling your illness and Corey stressing over how to handle things, that no matter what you guys can make it. And together you guys make a great team, warriors and lovers, conquering any obstacle that comes both your way. I remember paying her during the time when I was up in phoenix when you were going through at lot when I was reading your blogs. So I figure this would be a perfect gift for you guys. and I am very happy how well she was able to illustrate in what I wanted." My other friends said, "Oh my God this is perfect," and "JFC that is so Corey. Look at that leer."

In addition to those little gems, the "this is perfect" friend and I were having a conversation and my sex life came up as a topic. She had this to say, which (combined with the picture and sentiment behind it) totally cemented my faith in my relationship and its unique power and beauty.
"You two will be fine. I personally find that sex is best with a person you already fiction well with outside the bedroom, and you two are made for each other. Inviting someone to come over and play is a unit decision, a group activity, and only works because you two are already perfect together on That level. You'll be fine."

Yep. We are perfect together, and no matter what we can make it. We are warrior-lovers! The Artist also said, "And during the time I was reading the blogs up in phoenix, I felt really sad and helpless not being able to somehow get rid of the depression and the stress that you were going. So I figure I ask this, that way it shows some happiness that it can bring about through trouble times. I mean I can choke illness out of people, but I do much best to try to create something or think of something to present as a gift through help of others such as this artist or form a gift by myself. And of course I did my best to pay whenever money I had for the sushi up when you had your doctors visit. But yeah, I am going to cry up a storm here when I keep talking like this. Anyways you have amazing friends that have your back, how about that :)."

And she's absolutely right. With the Robot/Drogo firmly ensconcing me in his arms and my amazing friends at my back, there is no way I can not kick ass as I live life facing the gremlins. My various diseases may never go away and they may never be totally tamed and managed, but I'm not going away or being tamed either. I will continue to wear my tiara to doctor's appointments and to paint my walker bright colors to cover the shame and anger I feel at having to use it. I will prevail, and I will do so with or without this elusive thing called "sleep"! For now, though… I'm going to try to catch some. :)
I'm so behind on keeping up with my favorite blogs! I'm cherry picking the ones that I want to read right now, but the list just keeps getting longer and longer and I'm not certain I'll make it through the entire set before I'm asleep again. (It took me nine hours to check my Facebook notifications the other day because I couldn't stay awake long enough to check more than 3 or 4 at a time!)

I've been fighting fatigue. Bad, bad fatigue. The kind of fatigue that you don't actually fight, you just accept as reality and accommodate as much as possible, because the need for sleep is overpowering and overwhelming and can come on you with just a moment's notice. There is no way I can drive in this condition, as I find myself falling asleep in the midst of the most ridiculous, mundane tasks-- eating a bowl of cereal (spilled all over myself because I nodded off), going to the bathroom (almost fell off the toilet), standing in the kitchen and holding a conversation, pretty much any time I sit down for anything, and even a tad while out for my evening walk with Drogo. It's far, far past ridiculous and well into debilitating. Let's just say that this is further proof that my body refuses to do anything halfway.

It's a combination of the high levels of pain killers that I'm on and the other new meds and also the shifting weather of this time of year. I know it's not just the pain meds, as I went several weeks a little more tired than normal but not slammed with fatigue like this. It's always hard when you have to make adjustments to the regimen, but I'm confident that things will get sorted out in time. It's just the waiting for it all to settle down that's difficult. I feel like I've hardly seen any of Drogo at all, between his odd work schedule and my complete inability to stay awake for more than 15 minutes at a time. We may live in the same house but there's so much more that makes up a relationship and I miss him terribly!

The pain, however, has been good. I wasn't sure I'd ever be able to type those words again, but there they are! (pop the sparkling cider, throw the glitter and sparkles and confetti- careful not to get it in the cider!- and call in the dancing girls!) Last week was still very painful, but bearable, but this week has been, well… nice. Maybe it's because I've been asleep so much that I haven't noticed the pain? I dunno. A funny phenomenon I've noticed, though, is that now when my pain dips down below "I'm in extreme pain" levels it's almost like my body then ceases to realize that I'm still hurting. I mean, it's there, I can feel it, but suddenly it's not important anymore and now I expect myself to function at a higher level. Does that even make sense? I suppose it's because I've been in crazy high pain land for so long that dropping down to less severe levels feels like a picnic. Like a paper cut vs. a broken arm. (Well, okay, to be more realistic, like a stitched up gash vs. a broken arm.) And I honestly don't know what to do with myself. I feel like I'm malingering now if I insist that I'm still in pain and need pain killers, because I'm so vastly better compared to last week even. I know intellectually that it is continued, routine use of the pain meds that will keep me at these levels and hopefully take me down to even less levels of pain, but I do feel like a medicine chaser now, I do.

All of this brain stuff that goes along with being sick… it's too much for me to figure out. I need a shrink to help me wade through all of this and made sense of it.

Even as I type this, I feel myself flagging and growing more and more tired. I expect that I'll be close to napping again here in a few minutes, so a few quick updates…
-The craft business is getting off of the ground! I've made a friend here in town who is going to go in on it with me and we'll share the table. She's sold before, so there's the benefit of experience, plus she can give me a ride and load/unload the table, which I'm unable to do. I've been busy making all sorts of adorable little things to sell, and I'm excited.

-My neurologist thinks that I'm definitely doing the right thing in pursuing an EDS diagnosis down at University of Arizona, and encouraged me to keep going for it. I see him again in 3 months, and he put me on a medication that should help with the twitchies a bit. That's one of the meds making me so sleepy.

-My psych put me on an antipsychotic to help stabilize my mood and keep me from hitting those more manic-type highs, along with refilling my antidepressant. The term he used is Mood Disorder Not Otherwise Specified, because my case is too complex to be cut and dried anything. He is going after genetic testing to see how I metabolize medicine and if I'm missing any enzymes or anything that might be altering the optimal flow of medication in my system. That would potentially also explain a lot when it comes to my needing crazy high doses of painkillers to make any kind of a difference.

-This weekend is a party/get-together for the BDSM community here in my town, and I'm super excited to attend. I've never been to one yet, as there's not a whole lot that happens in our scene here (it's pretty small) and Phoenix or San Diego is a long way to travel for us right now for anything other than necessary doctor's stuff. Pleasure trips are out of the question. I am going to the secondhand store tomorrow to scrounge up something super sexy and smokin' to wear. Drogo will be wearing his standard jeans and a t-shirt, I imagine. I am nervous, but I know a few of the people there, and Drogo will be there, and I can leave whenever I want so it's not that big of a deal. I'm thinking that maybe we'll finally find a willing lady to play around with Drogo and I once in a while. It's been a long, unfruitful search so far, and every possible candidate has simply left me hanging after stringing me along for a while. If this is what men go through when trying to woo women, I feel sincerely sorry for them. It is frustrating beyond all reason to have a girl act as though she is interested and spend some time getting to know you and then BAM! You never hear from her again. She doesn't return calls, emails, texts, nothin'. No explanation. I don't get it. Women are confusing, bottom line. Poor men; you have my sympathy.

-I found a great supplement/multivitamin that is soy and gluten free, so I've started that up to nourish my body while it fights for health. I realized that I wasn't supporting it in that way, which is just silly because I need supplement support more than the average person would! So I'm pleased about that, because it also keeps me from having to buy all of the vitamins and such I was taking separately and saves me money!

-Disability is still out for review. I intend to call sometime this week and check on it to see about how much of a way we've got left, if they can tell such things.

And sure enough, my eyelids are drooping, it's getting hard to focus my eyes, and my head is getting fuzzy. Time to wrap this up and hit the sheets, the nice quality sheets that I scored for a super low price thanks to that Kohl's cash they send out and a friend's coupons that she sent me. They are the nicest sheets I've ever owned, and I love sleeping between them! Next thing will be to get some decent pillows, because ours are completely flat and lumpy and just worn out. Not good, not good at all. Pillows, and then a pillow top for the mattress, and then a good sturdy comforter for the bed. That's the plan for the next few years. I'll have to do it a bit at a time, but it'll get done. A good night's rest is essential to daily functioning!

Remember how I mentioned that it's Invisible Illness Awareness Week? Yep, that's still going. And I did a thing, because other bloggers are doing things, but I really didn't want to type it up on both blogs of mine, so I did the thing on the more pertinent blog and now I'm linking it here.

There's been a little quiz/survey/questionnaire thing going around entitled, "30 things you may not know about my invisible illness", and I went ahead and filled that out over on Honeybee Chickadee. If you'd like, pop over and give mine a read. Hopefully it can shed some light and insight into what life with an invisible illness (or three) is like!
Guess what, y'all? It's National Invisible Illness Awareness Week! I'm about half a week late on this, because, guess what else? Yeah, that's right-- I was busy being sick with my invisible illnesses ;) Funny how that works, ain't it?

Anyway, I'll be catching up with a few little things here and there that other bloggers are doing to 'celebrate' this week and to bring awareness to invisible illnesses and what life with them is like, but for now, all I've got is a post from my other blog, the more public one, that gives a little insight into what life is like for the invisibly ill. It's hard to deal with diseases that no one can see, and ones that aren't main-stream, popularly accepted diseases like cancer or ALS or autism. ALS and autism have some symptoms that are on the more visible side, but for the most part they suffer in relative anonymity.

When you have an invisible illness, it's easy to judge and be judged. "But you don't look sick!" I know, I know. In fact, I look pretty good, if you discount the weight gain. (Some would even say that I look better now, with the extra weight and curves, than I did before!) But the suffering is just as real, just as valid, as someone with a broken leg or a shattered spine. My disability is just as devastating and pervasive as anything else you can think of, but I don't have the "legitimacy" of a cast or an IV pole or something tangible that signals I've got a terrible reality squatting on my shoulder at all times. I suppose that I'm "lucky" in that I need my walker, the Bling Chariot, to get around outdoors because it lends me an air of disability that wouldn't be there if I simply limped around and sat whenever I got the chance. People often ask me if I've had surgery or injured my leg somehow, though. When you see an otherwise healthy looking young woman your first thought will probably not be, "I wonder if she is dealing with crippling physical symptoms that have totally devastated her ability to participate in society in a regular manner?" I think that now, when I see people with a particular gait or look on their face. I watch people much more closely now, and I understand a bit more than I did previously, but here's the thing: until you or someone you love has experienced something, you just aren't going to think about it. You don't know, you don't know a damn thing, and you really can't. And you know what? That's okay. That's okay because how could you possibly, unless someone explains it to you?

That's the whole point of Awareness Weeks. People don't know, they don't understand, because it's not visible and it's not obvious and if you haven't had experience with it you could never, ever guess what it's like and what we face. I didn't know. I'd never heard of fibromyalgia or chronic pain or connective tissue disease or Addison's or thyroiditis until they all happened to me. Food allergies I'd heard of, in passing, but I didn't know anything about them until I was forced to, for my own survival. I was told by a doctor yesterday that I am one of the most well-educated patients she's met, and though it's not the first time I've been told that by a medical professional it always shocks me. Shouldn't at least the people who have the diseases care? Shouldn't they want to know, to learn, to be as in control of these crazy diseases as you can via knowledge? But apparently many choose the path of ignorance, even when their very own body is on the line.

In closing, I can tell you that some of the most moving and profoundly meaningful things I've heard since I got sick came from family and friends who have told me that when they learned the name of what I have, they went and researched to understand it better, to understand me and my new reality better. My friend, The Artist, shares stories with me about how she defends me to friends of hers that see my comments and posts on Facebook through her account and question the veracity and legitimacy of my claims. Am I faking it for attention? Exaggerating? Fibromyalgia is just a "throw away" diagnosis; it means the doctors don't know what it is and they tell you that to keep you happy. She's probably not as sick as she claims to be. And so on. But this girl stands up for me, she calls these friends of hers out, and she shares what she's learned from me and from her own research and she shuts those kids the hell up! And it melts my heart with gratitude and something more, every time. It reaffirms my value as a person, as a friend, and her trust in me and the self that I present to the world. In short, her bringing awareness to others on my behalf validates me entirely, and our friendship to boot. It totally almost makes me cry every time I hear about it.

Personally, I think that's how awareness spreads the best-- through the personal connections. I am not going to stop sharing the hell out of articles and pictures and blog posts on Facebook, but it's the personal connection I have with my friends that makes them want to read the articles, to learn more, and to pass on the information to others when they hear ill-informed opinions being bandied about. Truthfully… I'm super humbled by the friends that have stepped forward to be by my side for this lifelong fight I'm enlisted in. There's no way, absolutely no friggin' way, that I could do this well in isolation.

With that in mind, happy National Invisible Illness Awareness Week! May our friendships and relationships be sturdy and true, and may they lead to greater awareness in others… and within ourselves.
Pain doc tomorrow. I'm terrified, afraid that I'll be turned away and rejected despite my totally legitimate need for strong pain medication. I'm always super nervous when it comes to doctor's appts and filling pain pill scripts, afraid that they'll take away my life-line.

I need strong pain medication to survive. The pain is so strong that it could literally kill me with the stress that it puts on my body.

The Intractable Pain Survival Manual is a fantastic resource, one that showed me that I'm not crazy for feeling like the pain was literally killing me. It allowed me to take myself and my symptoms seriously. I've been discounted and waved off so many times that I wasn't sure that what I'm dealing with was "bad" after all. Isn't that just sick? The medical community, who are supposed to be there to help, was the cause of a ton of self doubt and downplaying of the severity of my symptoms. And because of all of those experiences, I have a deep distrust of doctors and pharmacies, even as I rely on them for my basic survival. (I would say, "rely on them for my recovery", but that's not happening yet. I'm still trying to nail them down to get help to just stabilize my conditions, much less work toward any improvements!)

The IP Manual says this in regards to severe, uncontrolled pain: (I cherry picked from several of the sections within the manual)

"The biggest problem an intractable pain (IP) patient faces for survival is that a bona fide IP patient is a rarity among chronic pain patients. Chronic pain, by standard medical definition, is a pain that is present over 90 days, and which can be continuous or intermittent. Millions of people have chronic pain. Common arthritis, TMJ, carpal tunnel, bunions, and headaches all qualify. However, true IP, as defined here, is constant, severe, disabling pain, which causes changes in pulse rate, blood pressure, and adrenal hor- mone production. This form of pain is relatively rare. Control of IP requires the daily use of prescription medication. I estimate that one IP case occurs among about every thousand chronic pain patients.


Due to IP's rarity, almost every doctor, insurance plan, hospital, or family member you encounter will initially assume you are just another, average, chronic pain patient who can get by with the standard first- line treatments such as exercise, positive mental attitude, acupuncture, massage, and non-prescription drugs. To survive, you will constantly have to fight this misconception, and you must educate most of the people you encounter. 


It sounds so obvious and simple, but the hardest thing an IP patient to do is, down deep in your mind, heart and soul, stop denying that you have a serious, life-shortening, medical condition that will not go away. You have undoubtedly heard, for example, that alcoholics and addicts are often "in denial" that they have a problem. No question about this. It is human nature to deny that one has a serious, incurable dis- ease. There is also no question that an IP patient may have may have a greater degree of denial than the alcoholic or addict, because so many people ignorantly tell you "your pain is all in your mind." You must accept your plight, because denial will keep you from embarking upon a path that will effectively control your pain, give your life meaning, and extend your life. Every single day you delay effective pain control will cause your body to literally age and your organs rust away. Too long of a delay may leave you in a permanent demented, vegetative state. Bottom line. For whatever reason and whatever the cause, you have IP.

Your IP pain is long-standing, constant, keeps you from sleeping, drives up your pulse rate and blood pressure, and alters your adrenal hormone levels. You must remember that your pain is your enemy. To cause it to worsen or flare for any reason may do further damage to nerves and other body tissues that are already permanently damaged.

IP patients must continually remind themselves that they are rare patients. The vast majority of chronic pain patients have pain that responds to rather simple, common forms of pain relief such as massage, chiropractic, and non-opioid drugs. IP pain is different. Only potent pain relief measures are effective.

IP has numerous, severe complications which will shorten your life and incapacitate you unless you take the bold measures required to control IP. Totally untreated IP will cause death within days to weeks once it starts. This occurrence, for example, has been observed following injuries to soldiers who could not obtain morphine or other potent pain relievers. 
I'm so stressed, you guys. I have prescriptions I need to pick up tomorrow, but I can't afford the $15 to get them. I have a massage scheduled for tomorrow as well, which is one of the only things keeping me able to still walk right now, but there's no way in hell I can afford that. I could get my scripts, but then I wouldn't be able to pay my phone bill… and somehow I still have to make it to Phoenix twice and LA once this coming month for important doctor's appointments. Oh yeah, and the pharmacy in LA I got my pain meds filled at shorted me (and some other patients), and I've been trying to get it straightened out since Monday, but I'm running out today and I'm afraid I'm going to end up back in the hospital again… Damnit. I just don't know what to do. What can I possibly do that I'm not already doing? 

The worst thing is how unfair this is to Drogo. He has always worked hard, saved as much as he can, been responsible with his money, and the present is no exception. He just can't seem to catch a break, though. When it seems we're about to come even and he might be able to get a handle on his bills again and even sock away a hundred or two dollars, something breaks or is more expensive than anticipated, or some new bill crops up. Without fail. He is such a trooper, but how long can he last under such a strain? The poor man feels like a failure, but he is one of the most valiant men I know. How unfair is that? And it kills me that I am the source of this pain and stress. I hate it. I hate myself sometimes for being the instigator of bills that I am.

It's no wonder Drogo and I are having relationship problems from stress. We're both freaking the fuck out, trying to figure out how to just SURVIVE. I hate this. I hate this so much. Being sick is stupid. I have to believe that it will work out somehow, someway… but I really do not see it happening at this point, and it terrifies me.

I've done what I can-- created the fund raiser, sent links/pleas to every single person on my Facebook friend list, even sent the link and an appeal to some pages and businesses that I know… asking them to at least repost the link so that someone, somewhere might see it and have pity on us. I'm working on the inventory and production for my craft booth I've got planned for this winter. I haven't even put any money into supplies-- I'm just using what I've accumulated over the years. I applied for disability and we're just waiting, waiting, waiting… what else can I do? Seriously, what else can I do???

I'm stressed, scared, sick, and generally distraught… but I still have to believe that it will work out. We're doing the best we can. Life rewards that, right? Hard work, sacrifice, integrity… those all pay off in the end, yeah? I hope so. I genuinely, sincerely hope so. 
I really need to have sex with my husband. Not just want, although that's definitely a factor, but need. The problem is… we're not exactly having sex these days, at least not on a regular basis.

It came up in a talk we had as we drove back from the pain doctor last week. I am regularly flirting with him, throwing out double entendres and dirty jokes, making sure to touch him and get Physical Touch in there, and I get chuckles out of him and sometimes a bit of reciprocating physical affection, but more often than not it's just a verbal acknowledgment of the joke and an implied rejection in the silence that follows. Sometimes I get an overt rejection, and rarely rarely rarely does he actually take me up on the offer.

I mean, I get why this is. His reasons are perfectly valid and acceptable, but that doesn't lessen the sting of rejection or the cumulative hunger and longing. It's stress, you see. Our life is super mega stressful right now because of the finances and my physical ailments, and it's been building and building and no matter what we do it just seems to keep piling up around us like a big, invisible grave and I just want to scream because it's just so hard. I feel like I can do anything, take on any challenge, with Drogo by my side, but the stress is eating away at him and burying him deep in soft, suffocating layers and I just don't know how much by my side he is anymore.

I'm a very sexual creature. I am, and I own that. (It's remarkable to be able to say that without shame; something I would never have been able to do a year or more ago!) It keeps me feeling emotionally connected, it relieves stress, it fights pain, and it regulates my mood and keeps me some above the incessant swirling blackness of depression. Being celibate on my terms is one thing, but this enforced dry spell? I'm not handling it well. He said that stress has killed his libido, and okay, that's valid. That's legitimate. But it hasn't killed mine, at least not entirely. Granted, I don't want to have sex as much as I did anymore. I just don't have the energy, I'm usually feeling crappy, and I just… don't. But I have never, ever turned him away when he makes advances. I know that if I give it a minute or two I'll get into it and want to proceed, and sure enough, that's what happens. It's just… you can only be turned down so often before it's just not even worth trying anymore.

I'm constantly flirting, trying to initiate… and now I understand the stories told by men with frigid wives, wives who have lost interest or gotten too busy and distracted with the family. I so get it now. The awful part? The awful part is that I know specifically several men and women who would jump into bed with me if I so much as gave half a consent. I can name them, count them on my fingers right now, but the only thing stopping me is loyalty and love to my husband. It just… it hurts, you know? I know it's not about me, but after a while you just kind of start to wonder, is it me? Do you even want to be in this marriage with me? Why am I so undesirable to you? How can I be such a hot commodity to everyone else, but you won't give me the time of day? And I can't… I can't do that anymore. So I guess I'm going to stop trying. What's the point? It only ever works when he feels in the mood anyway, so why bother? I'm so tired of getting turned down, turned away. Take your stress and leave me the hell alone.

…he doesn't even cuddle me anymore. The loving byplay of yesteryear is gone, and I am so achingly empty and alone. He knows how I feel-- I've not been secretive about this--but I suppose he feels as helpless as I do. He understands it, too. His comments and conversation on the topic makes that blatantly clear. But I just want to feel loved again… I know he loves me-- he says so. (Usually after I've said it first.) But I don't feel it. I feel like a nuisance, a burden, a more or less welcome roommate, an expensive pet maybe. No, he cuddles and caresses the cats more than he does me, so I don't even rank that high.

It hurts. It just hurts. And I don't know how to fix it except to fix myself and get better so there won't be any more crazy bills and not enough money in a paycheck for our basic necessities plus my medical needs and he won't withdraw every night into his man cave and while away the hours not thinking, not feeling, until he climbs into bed and falls asleep.

I know he loves me. But why can't he suck it up and show me? I want that more than anything in the world right now.

Update-- After posting this, I went ahead and succumbed to my grief and the body wracking sobs, though I tried to keep it mostly quiet. Somehow, Drogo has this freaky, uncanny talent of knowing 99% of the time when I'm crying and where I'm at, and today was no exception. I was just picking up my laptop again to edit the phrasing on some of the words (can't even remember now…) when he came into the room, laid down just behind me, and wrapped me up in a big, spooning embrace. That, of course, made me lose it even further, but I feel like I did a good job pretending that I was unaffected, even if he could completely see right through it. At first I thought that he was going to bed but it was much too early for that, so when I guessed/asked about it he answered wryly but truthfully.

As we lay there, ensconced in one another's arms, I found my courage and slowly spoke of most of what I'd written here, not even bothering to change the words. a.) I found them in the first place and I can re-use them if I so desire, b.) they applied so perfectly to the present situation.

Anyway, he vowed that he would be more affectionate with me, said that sometimes he forgets I need the touchy feelies so much. I really appreciated that (still do), and the conversation was quite productive. I feel much more loved, and in fact he answered one of my questions with a surprising yet pretty much protected wet boy. He retreats into his man cave and immerses himself in a fantasy world (whether it's games with the guys, anime, stumbling websites, etc.) partly because he just doesn't like seeing me sick all of the time. Who does? I reframed the question for myself, trying to imagine Drogo in my place and mine in his, and I can honestly say that I have zero confidence that I would not immediately do the same. I would hate to see Drogo sick day in and day out, being helpless to do a damn thing about it, and feeling like a big and clumsy oaf if I try to help him with day to day tasks. No, I completely understand why he does as he does, or at least well enough, but that doesn't lessen the sting or sort out the snarl of emotions.

I'm optimistic about the future. When he realizes there's a problem and says he's going to do something about it, he damn well does it. I don't expect to get more sex, and honestly this wasn't a ploy for more. If I can't get it without resorting to cheap parlor tricks and frosted glass bottles, then I can do without. I'm just really happy that he understands that this is a big deal for me and wants to make it better. I love that man. Oh, and he says that he loves me "lots and lots" :)