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.