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

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

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

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

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

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

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

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

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

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

I'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!

I'll admit it-- sometimes I get really angry at how "easy" other people have it in their lives. I mean, yeah, okay, everyone has their stress and troubles and hard times but some people just seem to have a charmed life, you know? Yes, my incredibly troubled and grueling life is definitely the source of some good points, such as the personal strength, insight, and empathy that I have honed, but sometimes it'd be nice to just have it kinda easy for a while you know? And it hasn't been. My whole life, without exaggeration, has been one fight or another for sustenance, sanity, survival… what's up with that?

And then, just when everything was finally going my way… my health tanks. I was so happy. I was in school, pursuing my dream career, I was planning my wedding, working hard for a cause that I loved with a boss that adored me, I'd paid off my school debt, made huge headway in counseling… I had it made, man. I was good. Things were looking up. But then, then, everything fell apart around me and life is harder than it's ever been. Maybe. Life was really hard during the decade plus of abuse too, though. It's hard to say.

It's just not fair, man. And it pisses me off.

However…

There is good news. I have finally found a doctor that is both willing and able to help me with my pain! I'm diagnosed with "intractable pain" which, according to Wikipedia, is "a severe, constant pain that is not curable by any known means and which causes a bed or house-bound state and early death if not adequately treated, usually with opioids and/or interventional procedures. It is not relieved by ordinary medical, surgical, nursing, or pharmaceutical measures. Unlike the more common chronic pain, it causes adverse biologic affects on the body's cardiovascular, hormone, and neurologic systems." (emphasis mine) Doctors kept getting hung up on "fibromyalgia" and "chronic pain", missing the bigger picture of my pain, but this doctor gets it, and he wants to help me very much. I could cry. It was seriously everything that I had hoped for.

This is the dr's website, Dr. Porcelli. I have to drive 4 hours to get there, but to get my life back? SO worth it.

I was incredibly nervous, because I was afraid that I was just going to get shut down again and I have nowhere else to turn for help but the emergency room, and that is horrendously expensive. (Seriously… I have no idea how I'm going to pay all of the ER bills. *sigh*) He was very cheerful, funny, and engaging right from the get-go, though, and we chatted and joked back and forth the whole time. He looked at my chart and symptom list and was immediately like, "Yes, you definitely suffer from intractable pain! You've got one foot in the grave, huh? Just one banana peel away from packing it in!" (I thought that was funny. This was after he saw the "draw these shapes on this outline of a body to describe what kind of pain you have and where" chart that I filled out. It was pretty well covered in scribbles.) He thinks that with proper pain management I can actually go back to work part time in the future! Also, after a physical examination he discovered that my eyes have been damaged some from the pain, but they will heal when my body calms down.

The plan is to do a long acting opioid with a lower dose one for breakthrough pain. The ones he gave me this month aren't working very well and I'm still spending about 5 or 6 hours a day soaking in the tub, but we can address that at my next appointment. I'm working on getting physical therapy started, trying to do regular massages, and I'm also starting a few supplements (vitamin C, sublingual b12, omega 3 fatty acid, etc.) to boost my general health. I really want to start eating healthier again now that I'm more capable, but really, I'm basically just happy to have meds at all and to know that things are only going to get better from here! I mean, today my friend the Artist came over and helped me clean the house, and I was able to do quite a bit! The house is so tidy now. Ahhhh… we got to things that I've been wanting done for months, or at the very least since I got out of the hospital. It feels good to see my home in order again.

Also, I applied for disability this past Monday, and it was actually a really fun experience thanks to the lady who did my interview. I should get word in about 3 to 6 months, and she says that it's about a 50-50 chance as to whether I'm approved or denied. We'll see. I'm definitely going to appeal if I'm denied, no worries about that.

Oh, and I'm going to make an appointment with a geneticist this next week. Still pursuing further diagnosis, especially since Dr. Porcelli agreed adamantly that while fibro is part of my problem, it is definitely not the entire issue that is causing me to be so sick and in so much pain. So… we shall see. I've got my money on hEDS (Ehlers-Danlos Syndrome, hypermobility type). I fit the criteria so, so, so well, and a large majority of EDSers are either misdiagnosed or not diagnosed at all. The most common misdiagnosis is fibromyalgia, from what I understand.

I'm learning to live with this broken body, even as I try to figure out in what ways exactly it's broken, but it's not easy. I'm pretty resentful at times, especially when I can't get the help or answers I need or when I see my peers traipsing around and fulfilling dreams and stuff that I wanted to do and cannot join in on and will possibly never recover enough to achieve.

Like pregnancy. Due to the nature of my pain, I will probably be on strong pain medication for the rest of my life. That's just a fact of my life. (Ugh, my poor organs…) The implications of that, however, mean that I would have to stop my pain meds (and a couple others) in order to carry a baby, and that's not something that is feasible for me at all. Remember how I ended up in the hospital and ER a ton last month? Yeah. Just like that. And do you think that the stress of being so sick and in so much pain would be good for a developing fetus at all? Not a chance. Either way, my baby is at a distinct disadvantage while residing in my womb.

I'm never going to be able to carry a baby of my own, and that grieves me something awful.

People don't understand. I've shared with a couple of friends, and with Drogo, but the response I get is "Don't worry, you can adopt! There are other options. Have you thought of surrogacy?"

You guys. That's not the point, not the point at ALL! I know I can adopt or do a surrogate pregnancy. Creating offspring is not the issue here, the issue is that I am never going to be able to carry a baby or give birth, and that's something I've wanted for a long, long time. It's just another precious dream ripped callously from my heart and tossed carelessly on the midden. I don't care if I can adopt; I care that the vaunted experience of childbearing, one that I've already had bitter experiences with, is now beyond my grasp, through no fault of my own, and there's nothing I can do about it.

But folks don't seem to catch that, even after I explain, so… I just let it go. Whatever. Who cares if Cassie's world and future is shrinking and dulling, hope and happiness sloughing off like dried up scabs?

So after 2+ years of being on gabapentin ("Neurontin"), which is a psychoactive drug used to treat epilepsy and neuropathic pain, I finally decided that I wanted off. I mean, my dose had been increased several times throughout the years with still no help for the pain and too many negative side effects for me to want to take it any longer, especially if there are no benefits to outweigh the risks or negatives.

I tapered down after telling my neon pain doc that I wanted off, which she instructed me on how to do, but I was already not doing well because I had yet another instance where I was forced off of pain meds for a few days. It was a crappy week +, but then the night that I took my last dose I started feeling really, really awful. I thought it was just a bad bout of "fibro flu" at first, but as my symptoms continued to worsen and I was the sickest I could remember being in recent memory, even worse than when I had just been going through pain killer withdrawals. I told Drogo the second night when he got home from work how awful I was feeling, and how it just felt like really bad withdrawals and… then I kind of got an idea. I did some research online real quick (thinking that it may have been something to do with seratonin toxicity, which can be SO dangerous), but the only real change had been quitting gabapentin. My symptoms lined up perfectly, and I thought that I might be able to persevere at home now that I knew what I was up against. You know what I mean? It's just easier to fight a known enemy, even though I still felt increasingly worse. (And really? Going off of this med with no warning whatsoever that withdrawal symptoms were coming, much less that they'd be so virulent?! It was a very nasty surprise… but in retrospect, I should have totally seen it coming. Oh well.)

I had a doctor's appointment with my GP the next morning, and she was concerned. She wanted me to go to the ER for monitoring just because of the severity and concern connected with many of the symptoms, most importantly bad chest pain and very low (for me) blood pressure with severe and consistent near syncope upon movement. (I actually collapsed/passed out in front of CVS right after the appointment, but Drogo was there to catch me and lower me to the ground. I really gotta stop collapsing in pharmacies.

We decided not to take me into the Emergency Room because, even though insurance covers a lot of the expenses… the hospital is NOT a cheap place, not by any stretch of the imagination. Khal Drogo was stuck in a hard place, seeing me so sick and knowing that I really ought to go in, but looking at the long-term of our financial situation and just feeling that, well, we can't swing it. Ever watch Cinderella Man with Russell Crowe? He finds himself in similar situations as he struggles to feed, clothe, house, and keep his family healthy in the midst of the Depression. It was not easy to watch Drogo wrestle with the decision… it hurt me to watch him have to make such a terrible choice.

A few hours after my appointment, however, I was still worsening, and fast. I texted mom and RDad to tell them what was going on, mom called RDad, and Rdad called Drogo to tell him that finances weren't a concern. Get me to the hospital. The timing was great, because I had just texted Drogo from the bedroom saying that "I am getting worse, and I don't know how much more I can take." I broke down crying about that point, because while I deal with a great amount of pain on a regular basis I am also worn down from doing that for so long without any significant relief at all. The "regular" pain combined with the awful withdrawal symptoms and pain was just too much for me, and so on the 3rd day of withdrawals I ended up in the Emergency Room. I hadn't been able to eat hardly anything the past few days, and that morning I'd only had a small applesauce snack cup, so I started getting pretty ill from not being able to eat while in my ER room in the back. In addition to that, I wasn't allowed to take my own meds and so the time for pain killers came and went… and my pain (a 9.75 when I came in to begin with), skyrocketed. I finally fell apart after a few hours, especially after having to get up and move around for x-rays, and I started sobbing and wailing uncontrollably which lasted for an hour or two before I was given something that took the pain back down to manageable (about 9.5 again).

Yesterday was kind of a blur, but I know I was eventually admitted and I haven't broken down crying since. The pain has been bad, don't get me wrong, but below a 10, and I am okay with that!! LOL. During initial triage, the nurse that was trying to take my blood and put an IV in just wasn't doing a good job somehow. The tourniquet hurt like nobody's business, driving my already high pain up, and then she was digging around with the needle and tapping on it for over a minute before I told her to just use the other arm. I couldn't handle the tourniquet pain any longer. She hit a nerve (twice!) as she pulled out and I couldn't help but scream and start sobbing again. I actually blacked out for a split second because it hurt so badly. It startled me.

I've had some great nurses, though, and the doctor who saw me was good. Professional. Friendly, but genuine. He's keeping me overnight again, since I'm still so symptomatic and not doing well… sending me home would not be a good idea right now. I feel much safer and way more comfortable here, with regular medicine application, constant saline drip in my IV, nausea meds, and a type of synthetic opioid, methadone, that is actually used in detox programs for opioid addicts. My pain is still hanging out in the 8-9 level, but that's "normal" for me anyway, and my pain is being aggravated by all the other stuff so it's not a big surprise. I'm getting the methadone and tramadol, as well as IV solu-cortef, which is what's in the "stabby stabby" that I have to administer when I get into an accident or whatever to avoid adrenal crisis. It is more potent than the tablets I normally take, and I can feel it keeping my body more relaxed and stable. It's nice. I thin that was part of why I "collapsed" in the ER as well, because my adrenals were shorting out or whatever on top of everything else. I wasn't allowed to take my meds, remember? It was a nightmarish afternoon. I can legitimately say that I have not been in that much pain before in my life, except maybe in small, short bursts. I was waiting to pass out from the incredibly high pain levels and my utter fatigue (especially after sobbing uncontrollably for a prolonged period of time, and being so weak to begin with when I was brought in-- couldn't walk, could hardly sit up at all).

So… it's been a fun adventure. I feel awful, yes, but not as awful as I would if I had just tried to make it at home. I mean, I did try, and I made it as long as I could, but I just kept worsening instead of stabilizing or improving, and there's only so much a person can take, ya know? I'm so grateful for the intervention of Mom and Rdad on my behalf. I'm honestly and genuinely glad that I was admitted and that I'm being taken care of. This has actually done a fair deal toward improving my totally bleak perception of medical care here in my town, and in the hospital/ER in particular.

I haven't been able to sleep more than 2 or 3 hours since I've been here (or even the day before), and I keep waking myself up with dry heaving when I do manage to fall asleep, but I'm going to maintain a valiant effort to crash the heck out. I'm SO. TIRED. Hah.

Before I go tho, let me take a selfie… LOL. I figured I had to commemorate such a momentous event. Plus my hair looks freaking fantastic, rolling around in the hospital bed this whole time :D

How's my pain? It's over 9,000! LOL

Look! I'm a fall risk! First time for that… means I'm not allowed to stand up on my own.

A whole breakfast tray of… nothing I can eat. I learned how to order whatever "safe" food there was before my tray gets brought up pretty quick, and Drogo has been bringing me safe food from home so I can eat little bits when I'm hungry. Still can't eat much yet, abdominal cramps and nausea too bad.

But they gave me Sprite! Rock on, nurses.

Peace out, homies and fellow Spoonies. May your spoons be plentiful, and take care of yourselves, yeah? I'll stick to doing the same over here.

Doctor's appointment went well. The trip was uneventful, the appointment was productive, and we got to see an old friend for a few hours before heading back home. I plied Grampa with questions about his childhood and teen years and was rewarded with many stories about "the good ol' days". The trip back absolutely flew by as we talked and laughed.

The doc wants me to get further allergy testing as well as to continue to pursue the autoimmune/systemic angle that we are working with the rheum. He really thinks that aqua therapy will benefit me, but the only place in town that does it isn't accepting new patients. I must be a patient patient. lol.

He prescribed muscle relaxers to go along with the pain meds, and boy, let me tell you… they work! I can hardly keep my eyes open as I type this, so I'm going to wrap it up and go collapse into bed with my beloved. (I'm seeing double now. Glad I don't drive anymore! This would be super dangerous.)

So I pretty much had the craziest Monday of my life. It was long, involved, looooong, and there was a great deal of pain present, not just mine. Here's what went down…

I had an appointment scheduled with a pain clinic for 8:30 am on Monday. I couldn't get anyone else to drive me, so M left the ren faire she was working early Sunday evening to crash on our couch and drive me up early Monday morning.

3:30 am-- We hit the road in C's truck. M is driving while I am filling out the 27 pages of New Patient paperwork I printed out the night before. (I never got a packet in the mail.) A few hours later, I doze intermittently while M keeps driving.

6:30 am-- I snap awake in time to scream as M slams on the brakes and hits the car in front of us. Traffic just kind of… stopped… but we didn't. At least, not in time. The car in front of us was pushed into the car in front of them, and was totaled. The car at the far front just had a little bit of a smashed bumper, and they were able to drive away. M was injured in the accident with soft tissue damage to her wrist and ankle but refused treatment because she had to get me to my pain doc appointment. She helped me to mix up my emergency steroid shot and I stabbed myself in the leg for the injection, to avoid going into adrenal shock. An hour and a half of procedures and such later, I took over driving the now snub-nosed truck and we made it to the pain clinic with 15 minutes to spare.

8:15 am-- The secretary has no record of me in their system, and insists that I have no appointment with them. I am devastated, baffled, and slightly upset as they were the ones that called me to set up the appointment. We go outside and I proceed to fall apart emotionally. It's now been about 12 hours since my last pain killer (which was only 1/2 of one since I had been on half-doses that week, trying to make them stretch), and I have no option for getting more. M has an idea, and we pull up the phone number of the pain clinic that the neuros initially referred me to but had turned me away, and sure enough… I took us to the wrong place. It's now time for my appointment, and we're 1.5 hours away. They agree to try to fit me in at some point in the day, and we jump in the truck and book it over there. (In my defense, I have been drugged up on sleeping pills the past week and a half-ish, and the difference between Arizona Pain Institute and Arizona Pain Specialists really isn't that great. I think my confusion is justifiable.)

12:30 pm-- I'm now laying on the floor of the pain clinic, since I can't handle being upright any longer. They take me back to a room so I can lay on a bed thingy at least while I wait for the doctor, and I finally break down into tears from the pain. The nurse comes in, takes my vitals and information, and not too long after the doc comes in. It was a good appointment, and he takes me seriously. He is really happy to hear what rheum I am seeing and says that he's one of the best. He feels that there is something systemic, possibly autoimmune, that is causing the scope and severity of my pain beyond just fibro. (Finally, a doctor that agrees with me!!!) He prescribes me my regular pain killers along with aqua therapy, but I have to pass a urine test before I get my prescription. Makes sense. I make it to the bathroom before throwing up from pain, but then realize that they gave me the sample cup for some other woman. They bring the the right cup, I make it to the bathroom before throwing up (again), and pass my urine test. Sign a contract for responsible usage, get my script, and hit the road in search of a pharmacy.

???? pm-- The CVS down the street doesn't have the meds I need, but they suggest the Walgreens across the street. We get over there, they have the meds, but it'll be like, 30 minutes. While we wait, we fill up the gas tank and hit the Starbuck's for some tea (me) and coffee (M). Keep in mind that M is damaged this whole time, and is getting increasingly stiffer and sorer from the accident. She's still driving me around like a champ, though, limping along beside me and my walker, and even pushing me once or twice. I can barely walk at this point, and my pain has been at a 9+ for hours. I've only cried a little since leaving the doctor's office, but it's getting harder and harder to handle my pain.

As M is getting in the truck after pumping gas, we're approached by some white guy who claims that he's a Marine and served _____ places for ______ months and has $1600 in a bank account, but the bank doesn't have any branches around here and he's going to get it transferred to his wife's Wells Fargo account tomorrow but he doesn't have any money today and he needs to get gas in his car so he can go pick up his four year old daughter from daycare and they charge $20 for every 30 minutes you're late and can we spare some money to help him and he'll even give us his driver's license to hold until he pays us back? I say no, M says no, and he begins to protest. We tell him we don't live here, we're leaving in a few minutes, and he asks if we have an address he can send it to? I'm just like, "Nah, bro. We can't help you. No." He gives up and goes away, and M and I talk about all the inconsistencies in his story, which are many. I knew he was trying to scam us right away when he began swamping jus with unnecessary details. That's a pretty sure indicator that someone is lying to you, trying to convince you of the "truth" of their story.

We make it back to Walgreens and get my pills, which were cheaper than I expected. (Hallelujah!) As we are walking/limping/shuffling away from the pharmacy counter, I suddenly felt very faint and knew that I was going to pass out. I said so to M, "I'm gonna pass out," and knelt down with my head resting on the walker seat. After that, it's kinda fuzzy. I guess I slumped over and ended up on the floor with my face super pale followed by flushing, and was more or less unresponsive. (I remember bits and pieces, but most of this is what M told me and I just kind of gut feel that it's right.) A lady who was standing in the aisle came over and helped M get my sweater partially off so that I could cool down because I was very warm and sweating, and they took the pillow off of my walker seat and put it under my head. The lady in the white sweater held my hands and massaged them to get the oxygen back into them (my hands and face were numb, and I was hyperventilating some I guess) while M pulled my purse off of me. The male pharmacist came over and was also holding my hands (how many hands did I have?!), and another female employee was there as well, I think. Everyone was patronizing me, telling me what a good job I was doing and to keep breathing steadily, deep breaths, in through my nose and out through my mouth. They told me to squeeze their hands if I needed to, as hard as I needed, and as I was writhing on the floor they kept telling me to lay however was comfortable for me. The pharmacist told me to go to my happy place and I laughed. He said that his happy place would be under a race car, scraping off mud. I laughed again and told him that sounded like a crappy happy place. He said something about how he loves to race, anything involving that would be his happy place.

By this time, someone had called 911 and blocked off the aisle so that no curious onlookers could crowd around. (I never opened my eyes through all of this, so I don't know what anyone or anything looked like.) At some point, M tells me that I started screaming. Loudly. I hurt, okay? I know that I broke down and started crying, but apparently I was screaming/wailing very loudly while doing so. I don't recall that. I did wave my medic alert bracelet at them at one point, and they were questioning M as to whether or not we were together. She said, "Yes, we're together. She's one of my best friends!" (That's heartwarming to me ^_^) I somehow told them that the meds in the database for my bracelet weren't entirely up to date (they are changing so much and so rapidly lately!), so M went out to the truck for my big binder of medical info. I am so glad I have that thing!! I think the EMTs were there by the time she got back, but they wouldn't talk to her about what was going on. They wanted to hear it from me, probably to know that I wasn't delirious or anything.

I started getting my breath back and becoming more aware of my surroundings when the EMTs were working on me, so I was able to answer their questions. One of them asked me if I had any medical conditions, and I laughed at him. Then he asked me what medications I was on and I laughed at him again. I mean, I told him, but I laughed first. They got me sitting up, and then standing, and it was decided that I would just take a pain killer and try to make it back to our town. Since my case is so complex, with so many overlapping conditions, there really wasn't much they could do for me besides take me in to the hospital which I did NOT want to do. (We're kinda tight on funds right now, with all this traveling to the big city for my appointments, and ambulance rides and hospital visits are expensive. Not to mention the fact that we wrecked the truck that morning, too…) The EMT guy was like, "We can take you in, but you know your body and we don't. Do you think you'll be okay with just taking a pain killer? Is that what you think you need?" M and I agreed that it probably was, so I got them to push me out to the truck on my walker so M wouldn't have to, since I didn't really want to try my luck walking again. Somehow I ended up with a bottle of water that I drank, but it had no lid.

When the ambulance was at the crash scene that morning, I had insisted that M go with them to get checked out since she was obviously in a great deal of pain. She was so emphatic that she had to stay with me to get me to my appointment, and she was so cocky about how it was a good thing that she didn't go with them that morning or else I would have been dealing with all of that by myself and obviously I needed her. Yeah, yeah, yeah… lol. When the EMTs showed up, I waved vaguely in the direction of M's voice and said, "You're supposed to be the one going with the ambulance, f***er!" (I have found that swearing makes me feel better, but I think I should cut down on the habit since I have been doing it some very inappropriate places lately… such as when my mental capacity is diminished and/or I'm in a great deal of pain. Last time I got a steroid and pain killer shot at my doctor's office, I dropped a very loud f-bomb because it hurt SO. BAD. I thought it was in my head, but C was laughing at me and informed me that it was, well, out loud. Oops.)

The EMTs asked me what my pain level was at once they got me standing, and I immediately answered, "10. Wait, no… 9.5. I'm saving my 10." That day without meds was definitely the most pain I've gone through yet with this whatever-the-heck-disease-this-is. Every time I have to go without pain meds, it's worse. Now though, I've got consistent, established care with a pain doc and I won't have to worry about trying to scramble for meds. Well, I won't have to worry if I stick to the regimen of 4 a day. I know now that I can handle extreme amounts of pain, especially if I have sleeping pills on hand. I just know that I can't expect to have much of a social, professional, or personal life for a while yet. Not on only 4 pain killers a day. I'm not working anymore (which is also contributing to our financial crunch), so that pressure is off a little… I can pretty much just stay in bed. Not that I want to, but I gotta lower my expectations so that I can actually mentally make it through on 4 pills a day, without such a strong temptation to take more. I rationed out the correct amount of pills into my pill organizer and gave the big bottle of pills to C to hide. I told him that I'll come to him on refill day and ask for it back, then when I've refilled for the week I'll give it back to him to hide away again. Seeing the small amount of pills I have for every day will help me be less free with my consumption, because when I have the big bottle I'm digging my pills out of it's easy to think, "Oh I have plenty left… It won't hurt to take one extra right now, 'cause I'm really hurting…" Well, I have to realize that I'm pretty much always "really hurting" now, and I can't escape that.

Anyway, we got me packed into the truck and M drove us back home. The closer we got, the more pain she was in, so I stayed awake to chat with her and distract her from her pain (and mine). At my insistence, we met her mom at the ER as soon as we got into town and I left M with her. Guy M literally ran over to the hospital from his girlfriend's house (his ride fell through) and he drove me home in C's truck. He also spent the evening with me until C got home, which was nice. M finally got out of the ER at about 3 this morning (we got her checked in at the front desk about 7:30 pm), but fortunately she's only banged and bruised up. She was having chest pains even before we began our trip and could hardly eat or drink a thing the whole time, but that was determined to be an esophageal issue, and she will be following up with her primary care for that. (She had me worried! I was like, heart problems? Noooo!) The officer at the scene of the crash was talking to M and I just before we left the scene, and after I told him that I had wanted M to go get checked out he looked at me and said, "Why is she driving if you're not in any pain?" I was like, "Ohhhh, I'm in pain! I'm always in pain." It was funny. There were so many funny moments scattered throughout the craziness of the day, but the moral of the whole story is that M is a badass and an amazingly loyal caretaker and friend. We've decided that in the interest of simplicity, we're simply going to identify as sisters from here on out. It's just easier that way.

C took the news of his crushed truck surprisingly well, but he's definitely distressed about it. He had been planning to pay off a significant portion of the loan on it with his tax return, and also to put a chunk of money towards a new car for me since mine is set to crap out on us at any time. (It makes him nervous to be driving my car around, since he's afraid that it'll break down on him on the way to work.) Instead, he'll be paying the insurance deductible to get the truck fixed, as it's leaking oil in addition to the body work it needs. I'm really glad that it got us through all the running around we needed to do. We also have had to give up on the idea of the Celebirthsary that we were hoping to do, but I'm not as devastated as I might be since that was a tenuous hope at best to begin with. He wasn't sure we'd have the funds for it even before this happened. Guy M said something about how M was distraught over the idea of us not being able to have our Celebirthsary and how they were going to make it happen or some such, but I don't know if C will accept that. He has a proud streak… but I'm not above accepting charity! LOL. I'm just happy we got to go to one ren faire, even if it wasn't my favorite one. I knew that even if we got up there we wouldn't be able to do a nice dinner or go to the adult toy store like I wanted, but we'd at least have a decent hotel room and a day at the faire. But maybe I can put together a stay-cation for us here? Something, at least. I mean, our first wedding anniversary… it's kind of a big deal. Plus you've got our birthdays on either side of it, hence the Celebirthsary.

Oh, for those of you who haven't seen it, this video is the origin of the term "Celebirthsary". It's hilarious because C and I are so much like that couple. I mean, I don't go to trick C, but I love to celebrate anything, whereas C doesn't celebrate anything if he doesn't have to. The man doesn't even want a Valentine's card. He told me not to get him a card for anything, every, any occasion. Hah. Like I'm going to follow that rule!

So yeah. There you have it. My longest, craziest Monday ever. I'm still recovering from it (pretty much haven't budged from the couch), and I almost passed out again this morning, but I laid down in time and got it under control. I ordered myself a small pizza this afternoon and ate the whole thing by myself in one sitting. It was delicious and I totally savored it… until I started throwing it up several hours later. M said he totally knew that was going to happen. I guess I need to stop eating pizza. This is the 3rd one inside of 2 weeks… and I'm allergic to a lot of the stuff that makes it up. If I want to be kind to my body, I'll knock it off. But oh… I want to be kind to my taste buds, too! I figured I deserved an indulgence after a day like that… but maybe next time I'll indulge in something else. Like cheesecake. Except I don't know of any place that delivers cheesecake...

Ren faire!!! Well, the little local one, anyway. My friend K devised an ingenious footrest/sling for the Chariot so that I was able to sit and be pushed around by C most of the time. Despite that, I am very much paying for my outing today, but you know what? I totally don't care! It was worth it.

It was so nice to get out of the house, and I'd hoarded pain pills against this day. I also didn't use them all, so I should (hopefully) have enough to get me through to my pain appointment tomorrow, but only just. I'm trying to spend most of the time in a drugged sleep, surfacing only long enough to pack and prepare for my appointment. I know I'm overdosing on stuff that I'm not supposed to be overdosing, but it's either that or stay awake with the pain and let it feed on itself… which means that it'll take more pills than I have to break the pain cycle. Sometimes, though, I get this nice little buzz, a cozy sort of warm fuzziness, off of the sleeping meds (depending on circumstances, how much I've taken, how much is still in my system, etc.) and it feels good. That in and of itself kind of scares me, but it's nice to feel something other than pain for a change. As of right now, I can feel the last batch I took (about half an hour ago) starting to kick in. My intense headache is being muffled, my eyes are getting kinda heavy, and I just feel a little… fuzzy. And slightly dizzy. But mostly fuzzy.

Want to see pictures of the foot sling? Check it out-- kickboxing wraps for the straps, a couple of carabiners, and a wire shelf that looks suspiciously like a baking rack.

Also, the urge struck me (and I had hours to kill while C was sleeping), so I took the time to do my makeup today. I have some eyeshadow tutorials on Pinterest that I used as an inspiration, since I pretty much have no idea what I'm doing, but I think it came out well. I just hate putting on makeup because it takes so much effort to take it off again! Wish I'd gotten a picture of me in garb as well, but I didn't think of it… so here's me in my pajamas! lol

So today we plan to go visit the local ren faire. I'm inordinately excited, as I always am when it comes to renaissance-themed events. I plan to wear my green dress (the one I initially bought to get married in), and, joy of joys, I can get away wearing it without supportive undergarments! Freeeeeedom.

My friend K devised an ingenious sling of nylon webbing, carabiners, and something that looks like a wire baking rack. It loops over the handlebars of my walker so that I can rest my feet up off the ground and be pushed on the Chariot. It's a foregone conclusion that I am not up to walking around a dusty fairground for hours. I woke up with pretty severe back pain, especially low back pain, so even getting to the kitchen from the couch is a bit of a challenge for me today. I saved pain killers especially for today, though. I will not miss out on more things, just because I'm sick! I'm already having to miss K's wedding, although that's really more of a financial thing than anything else… I missed being able to spend a week with J and had to content myself with just a few hours. I had to give up my job completely this past week (which my heart is still crying about)… no. I draw the line at ren faires. As long as I have someone willing to push me, I will force myself to stay upright and conscious long enough to at least make a pass through. I do have to make a point to take pictures of the ingeniously designed sling, though. Many people have asked for them.

Despite the high pain levels, I am feeling a bit cheery today, probably because I'm expectant about my adventure. I need to shower, but I'm feeling so buoyant that I may decide to do my makeup as well! I've compiled some really neat eyeshadow tutorials on Pinterest, and I've been dying to try one of them out. So far, though, I've not had the energy or the occasion. Seeing as how C recently laid himself down to sleep and won't be up again until 1 pm, I've got hours, so I can take my time and just do a little bit at a time. Once the sun comes up, I will bring my makeup out into the living room and set myself up a little makeup studio. Maybe I'll put on one of my favorite animated movies while I do that. I'd like to re-do my toenails, too, but that is not going to happen today. Too much back and ribcage pain for me to be bent at the waist for more than a few seconds. Besides, sparkly nail polish doesn't ever look abominable, even when it's chipped. Plus I'll be wearing boots.

Oh! Oh! My friend L, who moved to the East coast, is in town this week! She showed up the other night and surprised me :) It was really nice. I was feeling pretty awful (that was after I'd been throwing up, but was recovering), but she already knew the status of my health so there was no pressure. We hung out on the couch together, watched Pirates of the Caribbean, and chatted up a storm. Heyyyy… maybe she'll come back over and do my toenails for me? I'll be seeing her at the faire today, as well.

So far my tactic of drugging myself senseless with sleep aides and Benadryl has worked. I've slept a lot, and it has helped me to stretch out my remaining pain pills further than I ever anticipated. I'm really proud of myself for making it this far. It's been miserable, to be sure, but I'm still here, and I made it work. Now, to just make it to Monday morning… God, I hope they give me a script. I've been keeping track of my pain, (the new blog, remember?), I keep track of when I take my pills, and I've got the timeline of my symptoms and pain, so it's pretty clear that I'm legit. Not to mention the fact that M will be with me and I won't be alone, so I have someone who's seen my sickness firsthand and has taken care of me. She can add valuable perspective, and help me to advocate for myself. I couldn't find anyone else to take me up there on Monday, though I asked around, so she will be skipping out early on the last bits of the ren faire (she's staff there) and driving me up at butt-thirty in the morning. We'll be leaving by 3:30, I believe the plan is.

Have I mentioned that I'm terrified? I'm so scared that they will refuse to help me… or worse yet, want to help me but be unable to. I'm scared that I'll be labeled as a drug-seeker, as a faker, that I won't be taken seriously, and that I will be condemned to try to live with this pain as best I'm able. This is, essentially, my last hope at this point. These are the people who can help make my life livable and bearable. Whether or not I am able to control my pain dictates whether or not I'll be able to participate in life again, to hold down a job, to drive myself places, to have fun adventures, to have sex with my husband, to keep my home in order, to exercise and help my body to be as healthy as it can… It all kind of hinges on what goes down this Monday. And that, my friends, is terrifying.

I know I've not been particularly vocal lately. I'm just lying low, drugging myself into sleep with Benadryl/Unisom/Ambien, trying to make it through this painful and difficult time. I am not as sick as I anticipated, or as sick as I've been in the past when having problems with pain meds, but I chalk that up to the fact that I had the foresight to drop down to half doses rather than let myself run out completely.

I've got a few whole ones stashed away for tomorrow, which is the day we visit the Ren Faire. I only need a few good hours, then I can go back to being an absolute wreck.

I'm terrified of what's going to go down on Monday… hopeful, yet anxious. I don't dare contemplate what fate will befall me if I am refused pain meds out of hand. I have a plan, should that transpire, but it's nothing anyone who loves me wants to hear about. I did tell my husband, to a degree, so he knows but it's not something I prefer to dwell upon.

Here's hoping things go well on Monday and I can become a person again.

Today is the gear-up, preparation day for The Appointments tomorrow.

As I was drifting off to sleep last night, I realized that I am very, very anxious about what is going to transpire tomorrow with the rheumatologist. The psychologist? I could care less. Well, okay, that's not entirely true. The psych will have control over my antidepressant, I'm sure, and that has definitely had an impact on my overall functioning. However, if I were given the choice between my antidepressant and my pain meds… I think we all know which way I'd go. Antidepressants, duh! (I kid, I kid!)

I just… I mean… I'm terrified, y'all. Just so petrified. So, so anxious that my symptoms will be downplayed again, that I'll be told I'm prone to exaggeration again, that my coping mechanisms will be called into question again (without offering any assistance or anything), that my pain won't be taken seriously again, and that it's going to be harder than filling a sieve with Jello to get adequate pain management again, and that I will just end up spending another year getting sicker and sicker and in more and more pain without anyone in the medical community bothering to figure out what's really going on. It's like… this could either be really good or really bad. I'm terrified. I don't know what to expect, but my experience with this stuff so far does not have me exactly resting at ease.

But… I will do my best to come prepared with all the information and documentation that I can to make this as smooth and painless as possible.

Besides gathering all my supplies for tomorrow, I'm hoping to be able to do some more cleaning and tidying of the house. Will that actually happen? I'm uncertain. The pain is pretty persistent and gnawing today, so we'll see. C helped me clean yesterday, mopping the floor after I swept as well as helping me make the bed after I washed all the linens. That has taken a tremendous load off of my mind. I've been bothered by the dirtiness of the floor for weeks now, but unable to do the task myself. Then, of course, I ran out of meds and wasn't doing a damn thing, so mopping was out of the question. Today, I'd like to get the dishes done (since I went through pretty much every single dish while sick, because doing dishes? Hah. Right.) and clean the bathrooms. Dusting would be nice, too, as well as putting away the laundry I did yesterday. If I only get one "cleaning" thing done today, though, it's gotta be the dishes. Well, that and my laundry. How I wish I could do it all in one blazing, glorious, Spring Cleaning type day! To think that I used to HATE the weekends because Mom would want to get all the cleaning that had been put off throughout the week done on Sunday, and of course we were obligated to help. Now I'd give anything to be able to take a day and just clean the house really well. Of course, I try to employ the method that Mom never quite got the hang of, which is tidying up throughout the day and week so it doesn't all pile up and necessitate an all-or-nothing cleaning binge. I'm sure it's harder with kids, but it's also pretty damn hard with chronic pain, too.

So that's the plan for today. Eat, clean, and be merry, for tomorrow I may want to die.

Oh, and quick side note of great importance? The local ren faire is next weekend! Whoop whoop! I'm so excited. I look forward to this all year.

I got my real pain killers, y'all! The neurologist's office up in the big city ended up overnighting it to me, and we cashed it in just an hour ago. I was terrified that after a week and a half of fighting for this prescription and almost a week of immense suffering, the pharmacy would not be able to fill it for me for some reason or another. I mean, I have that fear every time I go to get my pain meds refilled, but this time the fear was especially poignant.

My body and mind are exhausted. I went to my primary care doctor this morning and got some anti-nausea meds and a steroid shot to help my body recover. It has been under a lot of stress this past week, and it never really does so great even when it's not being subjected to harsh conditions. Needless to say, I'll be spending some time recuperating. But now I can actually clean my house! Huzzah!

And with that, I'm off to nap with the hubs. (Sweet heavens, I can feel it kicking in already. It's like liquid gold pulsing sweetly throughout my body. I'm so happy.)

Life's been a little hard, but it's about to get a heck of a lot harder.

The rheum that's been letting me down for the past year and half is continuing her pattern with great style. I went in to get a pain killer script to carry me through to the appt with the new rheum, and she wouldn't fill it because she says it should last a month. It wasn't supposed to last a month! So anyway, I'm now jumping through a million hoops with different doctor's offices to get statements from one to go to the other so they can write a prescription for me since my old rheum is a douche… Do you know what she told me in my appointment when we were talking about possibly increasing pain killers? "I feel that addressing the underlying issues causing the pain would be the best thing for you."

No… you're kidding. Hmmm… Isn't that maybe what I've been paying you to do for the past year and a half?! I am livid. I hold her responsible for the state of my health and how far it's declined. It's her fault for not pursuing diagnostics to figure out what the hell is wrong with me, and now she's screwing me over on something that I desperately need. I am not a happy camper.

So I've been really really good about my pain killers, taking them as prescribed, but I will be running out on Sunday, because that's just when the script expires. Monday is a holiday, so the doctor's offices won't be open, and the one that I'm waiting on right now told me "sometime next week".

Dear god… They have NO idea how sick and miserable I'm going to be. They just don't know. And I'm terrified… because I'm already so sick. My levels of pain and other symptoms are approaching what  I was experiencing when I was off of the meds, so I'm sure that these days I'm without meds will be a special kind of hell.

The worst part is that this is absolutely not my fault, none of it. I trusted that doctor's office over and over again, and they have let me down over and over again. I feel… betrayed? I feel… taken advantage of, I guess? I mean, I'm the patient. I'm relying on them completely for my care. I'm powerless. I can't diagnose or treat myself, and I certainly can't write my own prescriptions. I'm in their hands, and they just dropped me. Again. I'm outraged. I'm incensed. I'm broken hearted. I'm facing an interminable stretch of horror because of… because of… ?

This is not gonna be fun. You probably won't be hearing much from me. I am just hanging in there until the appointment with my new rheum… hanging onto hope that maybe this time, maybe this doctor can help me figure out what the hell has gone wrong with my body. Oh! I also got a call from the hospital in the big city and they set up my initial appointment with a psychiatrist as well. It'll just be one fun-filled day, I'm sure. The psych appt is after the rheum appt, so if the rheum proves to be particularly disappointing I have a professional to cry to. That's something at least. Heh.

This is "David" the plant, and the lily that bloomed today.

I've been anxiously awaiting the blooming of this particular flower. I sincerely hoped that it would open before I took off to go see the fam, and I was rewarded today for my patience and hope. I texted all of the S's to tell them about it, and then I went to D's fb page and left him this message:

"I have a plant named "David". Actually, it's a collection of plants, all in one basket. It was at your memorial service, and the ladies didn't have room to take it back to Id with them. Actually, I wanted it anyway, since I didn't have anything to connect me with you, really. K got your guitar, J got your Bible and I got...? I know I'm not your real daughter, but I still wanted something of yours to hold and remember you by.

Well, the plant is flourishing. I feel like it's fitting, since you were such a plant guy, that my connection to you should be plants. It's doing so well, in fact, that it sent up a flower, a pure white lily. I've been anxiously waiting for it to open, hoping that it would happen before I left for the month. After all, I never did get to see my tulips bloom, either. Not once. But the memory of talking over the pros and cons of the various kinds with you and your obvious pride in my selections is enough for me.

It opened today. I think you'd be proud of me. Your girls and C all agree that you would, and that's enough to bring me to tears. I want you to be proud of me. I miss you. I miss you so much! I am always crying when I come on here to write to you! It's funny. But not. Because I miss you... so much. I'm glad I got to see your lily open."

The kitties love being outdoors. That's Juneaux by the table and Coraline in the "grass". (Weeds. They're weeds.) When I wake up I open the back door for them, and they come and go throughout the morning. When C wakes up I shut the door and open our bedroom window. Since it doesn't have a screen, it's become the "cat door". C has plans to get a screen for it and then cut a hole in the back door somehow and install a real cat door so they can come and go as they please. He wants to get them to the point where they go to the bathroom outside and we no longer have to have a litterbox. We'll see about that one. The ground is too hard for them to want to do their business out there, I think. Hard packed. Not diggable.

I'm slowly but surely preparing for my big trip back east. I got my packing list all spec'd out, and I wrapped/prepared for packing all of my Christmas presents last night. I also finished the sorting of the HJ's massive stash of handouts, and I will put together a binder of pertinent handouts for J to have. Hopefully it helps her. She seems to be looking forward to taking care of me while I'm there: painting my toenails for me, making me tea in the morning, cooking for me... It is going to be strange, allowing myself to be taken care of. I am so used to being the caretaker and peacekeeper for my family. I've been the second mama most of my life. And now... now I'm basically helpless. All I can do is offer emotional support and what wisdom and lessons I've gleaned through the years. Then again... everything works out alright. Maybe this is exactly what they need right now, when they're all so broken... Maybe they need someone to take care of and nurture who will love them for it, to heal the sadness within themselves. That's what Juneaux did for me while I was facing down my demons. Maybe this is just right. We shall see.

I have been much more stable emotionally these past few days. I think C was right, and that the accidental withdrawal from my antidepressants was affecting me more than I realized. It does help tremendously to stabilize me. I have also identified the trigger for this round of suicidal ideations, and that is the anxiety of running out of pain killers. I have to consciously stop myself from worrying about what will happen when I run out and thinking about trying to survive without them; I cannot think about how sick I will become and how overwhelming the pain will be. It's too much. I have worked out a few possible options to make sure that doesn't happen (all legal, thankyouverymuch), and now I will let the matter rest. I will deal with it if it comes up, but then and ONLY then.

So now I will finish my chick flick while putting together J's binder and drinking delicious tea from my bestie J. I think we've finally worked out my being able to see her after all! Suh-weet! Her family is so wonderful and understanding. I got this message from her yesterday:
"My dad's response to learning about the situation with your appointment - "Ah Birdie, we completely understand and would want her to do this at any cost.
Work something out with the airline, but if not, well, we support the industry; may it 'live forever'.""

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

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

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

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


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

Oh good grief.

I thought I had written a post the other day, but it turns out that I wrote it in my head and never actually typed it up. That happens more frequently than you'd think. Most of my thoughts vanish into the vapor without ever seeing the light of day, and considering how much I talk and write you can see the volume of thought that is constantly pouring through my head!

First of all, my husband is a fantastic support for me. I broke down when he got home and cried (of course) and ranted (naturally) and even went so far as to accuse him of not being supportive of me. I immediately apologized, and he accepted it graciously. He held me close and said, "Well, you're angry. It's ok." And you know what? He was right.

I hadn't realized that I was angry. I am angry. I'll have to explore that more in depth later, but I am angry. I'm angry with my doctor for not taking me seriously and not pursuing adequate testing and treatment options for me, for letting me get to the state of health that I'm in without really apparently trying to prevent this rapid decline, or even believing it. I'm angry that I hurt all of the time. I'm really angry about that. I hate it and I want it to stop. I hate that I'm losing the use of my arms and hands, and that I had to get a friend to drive me to my doctor's appointment because I couldn't lift my arms and I was twitching all over. I'm angry that, despite "treatment" and stronger pain killers (that I'm taking as prescribed!!) I'm still in so much pain that I've cried every day this past week.

Anyway, I then proceeded to vent some more, and we cuddled, and he affirmed me on my physical appearance as I requested, and all was well. Earlier that day I had practically crawled to my friend's pawn shop to take advantage of a dollar sale for Christmas gifts, and I spent about an hour there talking and laughing with two of my friends. It was definitely a mood booster, and even though I felt little better physically my spirits were lifted. Then when C came home and I was able to just explode with the pent up emotions I felt so much better. I was actually laughing and joking lightheartedly by the time I went to bed even though I still hurt badly.

Support systems. They're what will keep you going when you can't go any longer on your own. J, C, E, the M's... They've got my back. I'm so, so grateful for friends that carry me when I don't even have the strength to twitch.

Dear Dr. L,

I want to take this time to clarify a few things that I feel are impairing the effectiveness of our doctor-patient relationship. I am completely open to the possibility that I may be misconstruing events and that you intended to convey a totally different sense of things. I would like to check if this is the case so that we can better work together to identify and manage my illnesses.

First off, you should know that I read the records I received to pass on to Dr. M, and I have them in my possession since the doctor was unable to receive me as a patient. This means that any references I make to my records are direct quotes, and not subjective memories or impressions.

I admit that I was greatly distraught upon review of my records, as I feel that there have been some serious oversights and miscommunications. (Also, I had allowed myself to raise my hopes in regards to seeing a pain specialist, so being denied that opportunity-- again-- really threw me into a state of heightened emotion.) In the "Rheumatologic Exam" section of each appointment, results for various examinations are listed as though the exams were performed at every appointment when this has not been the case. I recall only 3 appointments at most in the entire year that I have been seeing you that I have been touched or manipulated in some way for an exam; certainly not at every single appointment. It troublese me that at every appointment my joint and flexor tendon examinations have results reading "Normal exam", yet I was never examined. The trigger point examination notes diffuse trigger points throughout, but I am not re-examined for this (though it's true). Also, I noticed on my chart that I have an assessment of "fatigue with polyarthritis". Why has polyarthritis never been mentioned to me, and why are we not addressing it if it has been determined that this is an illness I'm dealing with? You have seen my health declining rapidly over the past year, yet it would appear that an apparent lead to managing my symptoms is being ignored. I need an explanation on this.

This brings me to my next, most sensitive, point. It is very clear to anyone in even basic consistent contact with me that my health has declined noticeably and rapidly within the past year. I know that we are taking steps to arrest this downward slide, yet I do not feel that I am being taken seriously. Perhaps the blame lies with me in not being clear enough about the severity, frequency, and variety of my symptoms, but the sense I get is that I'm being dismissed. It's like if I come in and say, "Oh, my sickness is at a level 7. It's debilitating, it's ruining my life," you take it as my sickness is really only at a level 4 and I'm not really that impaired. Remember the "FMS rating scale" that I brought in to show you how low my level of functioning was? I was trying to get you to understand how low my basic level of functioning had fallen, yet in that appointment's notes and almost every one following (with the exception of the last appt) it is noted that the "patient has no difficulties performing daily activities" despite my repeated testimonies to the contrary. I have tried to impress on you the extreme levels of pain that I am in by the hour, the minute, the day. I have been open about my excessive use of pain killers in the past, which was a desperate attempt to control and somehow evade this pain; to get back to a somewhat normal standard of living. I have, I thought, been very clear about the profuse, intense, and increasing amount of symptoms that I have to deal with, and the disability that has come as a result. I feel that not only is my sickness not being taken seriously enough, but I feel that the measures I am taking to cope are being dismissed as exaggerative.

A perfect example is my walker, the "Bling Chariot". (Or, as my brother calls it, "Walker, Texas Ranger". Or, as the lab techs call it, "Luke Skywalker".) I am not sure how you were unaware of my having it until now, as I've brought it to several appointments with me, and I have had it since last December. I bought it for the plane trip back to W to visit my folks. I knew that I did not have the physical endurance to both walk through the terminals and carry my bags without becoming so ill as to be rendered immobile. The cold of a W winter, and the fact that I was not yet on pain killers, forced me to use it for mobility's sake while I was there, as I could not walk normally due to pain. (This was back when the pain was localized mostly in my lower half.) When I got back home, I didn't use it for a while, feeling that I did not need it for basic mobility. After a time, I began using it when I knew that I would be standing or walking for a long period of time, and the pain from that would make moving very difficult. It was also handy for the fatigue that accompanied long periods of walking or standing. As time went on, my pain increased and my endurance decreased, and I began to use the walker more and more. My husband got me the walking stick that I think you remember so that I would not have to cart the walker around and endure the stigma of a young woman with a walker (no matter now neatly decorated), but that way I still had something to help with mobility issues due to pain and fatigue.

That worked well, until recently the pain in my hands became so great that using the stick is out of the question, and I have come to rely solely on the walker as my means of mobility aid. I explained to you at the last appointment that I use the walker to help with balance, to help me walk when pain affects my mobility, and to provide a resting place when fatigue/nausea/lightheadedness overwhelm me, which is frequently. My endurance is at the lowest it's been, and a simple grocery shopping trip of half an hour requires several rests, sometimes ending in my husband or a friend wheeling me around on the walker like it's a wheelchair because I am too sick or in too much pain to walk myself. That happens more often than I'd care for it to. I explained this to you, and in the notes for that appointment you wrote, "The patient requires walker for mobility states she has had this since 12/12, but this is the first that I have known about. Uses it for fatigue, pain, dizziness, tremors." I see that you listened to me, which is awesome, but I got the sense from the appointment (and from the notes, though I was emotional at the time of reading the notes and have since decided that I was putting the wrong meaning into that part) that you think I'm exaggerating. As you put it, you consider it to be "a crutch". (In reality, though, that's what it is, right? Because a crutch is a tool to help you be mobile when you would otherwise be immobile, so... in that sense, it is a crutch.) In short, I feel demeaned, not taken seriously.

I feel that way with my treatment as a whole, frankly. It appears to me as though you are taking me seriously, so you are not seriously pursuing the root issues of what is causing my pain and distress. I do feel a little more as though you appreciate what I'm telling you with the hand x-ray and ultrasound that was ordered, but this seems to me to be the first decisive action towards further exploration of my condition in a long while. I understand that the diagnostic process takes time, especially with the types of diseases that often mimic one another, but surely there must be a more aggressive manner to pursue diagnoses? I feel that the symptoms that I bring up are casually acknowledged and then dismissed. You sprang into action when I mentioned hand pain, but what about the insane spinal pain that I've been telling you about for several visits? That concerns me, but it is not even mentioned in the notes. The fact that I have recurrent fevers and sores of the scalp, mouth, and nose seem to be of little to no consequence to you. That you note that I "insist" that certain symptoms are related to autoimmune diseases makes me feel like I'm seen as some patient who decided she had something she found off of WebMD, not to be taken seriously. My general practitioner affirmed my inherent understanding of my body right away, and while she corrected me on some points, I still felt heard, understood, and that she was taking action on my behalf and had my well-being in mind.

I want you to take me seriously when I tell you that I am seriously impaired, that I live with devastating pain on a daily basis that is not adequately controlled by pain medication or the alternate coping methods I employ, that I am worsening over time, that I am alarmed by the rapidity and severity of my symptom development and I worry that I will be completely disabled in the near future, and that my life has literally been ruined by whatever is going on with me. I want you to understand that while it's easy for you to listen to my litany of problems and then wave me out the door, I have to live with every single one of them, every moment of every day. Nothing we have tried so far has made any of it go away. I want you to realize, truly realize, that I am becoming increasingly desperate and unsatisfied with my quality of life, and that depression is becoming a major problem for me.

While discussing this situation with my husband, he assured me that I am not a pansy, and that I'm not an exaggerator. If I say it hurts, that's because it hurts. I'm not the type to stub my toe or come down with a headache and need the rest of the day off. He reminded me that I am more in tune with my body than the average person, and I have a good grasp on what I need to do to make life work for me as well as possible. Regarding the walker, he stated that I know when and if I need the walker, and I use it. I don't rely on it unnecessarily. I trust his assessment of the situation, as he sees it with more clarity and less emotional involvement than I do, and he also sees the impact of my sickness from a different vantage point. He knows whether I actually need the walker or not. He sees me resting for an hour or more after doing a sinkful of dishes. He sees me curled up on the couch, day after day, because I am too overwhelmed with pain, nausea, and fatigue to be upright and mobile. He also played devil's advocate and made an extremely salient point, which will be my last.

My husband pointed out that when you see me, I am at my "best". I'm out and about, I'm dressed, I've got my makeup on, and I'm running on adrenaline to make it through being out of the house. You see me when I'm "okay". I'm sitting up, smiling, talking, cracking jokes... it seems that I'm doing okay. But you don't see the aftermath. You don't get to see that I barely make the drive back home and then crash on the couch for the rest of the day. You don't get to see the pain spike because I used my energy reserves for the day at that one appointment, or the fever that comes with overexertion, or the nausea and dizziness that keep me prone even if I weren't so bone-tired and wracked with pain. You don't see any of that. You see a relatively happy, healthy looking girl who wanders in with a walker. So I see why you might not be taking me as seriously as I wish that you would.

This isn't an ultimatum. This is a cry for help. I asked you in the past to help me, please help me, and you said that you would. So please... help me. I want my life back. I don't want to live this way. I hate it. I want to be a real person again, with a social life and my old hobbies and the ability to contribute to my household's budget. I want to find out what's going on, what's really going on, why I'm so sick, so I can do everything in my power to control it.

Please, correct me if I have gotten the wrong impression anywhere. I would like nothing more than for our working relationship to be strong and productive, and I apologize if I offended you in any way.

Sincerely,

Cassandra