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.

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?

Good things have happened, as well as sad things. I'll write about my birthday and house stuff tomorrow, because I'm busy with other stuff right now.

I just wanted to note that I'm being rather strongly encouraged from various sources (who know nothing of one another) to take my writing seriously, and to take my unique perspective on chronic illnesses seriously, and to do something with them that will help the world.

This means a website/blog.

Yeah, well, I feel pretty thoroughly inadequate for such a task as that. I mean, who would want to read my stuff? I'm just a lady who has problems and likes to write about stuff. Is it really worth sharing with the world? Could I really make any difference at all? Is it just delusions of grandeur, just pride and misguided intentions leading me to overstep my bounds?

Yet I am assured by my friends sitting in the living room with me that, even if something has been said a million times before, everyone relates to it in a different way. The way that I state something may be just the thing someone needs to have an "aha!" moment, when they had read the same thing written by someone else and had no response whatsoever. It's true. I know it's true.

I'm just so scared of failure... of putting myself out there and being shot down.

Scared of dreaming big.

Scared of doing something that matters.

Scared of wanting to make a difference and realizing that I can't.

Scared of being weighed and found wanting.

'Cause really? I love to help people. And I love to write. How could I  not want to combine those two loves?

Because when you put all your eggs in one basket, you run the risk of them being crushed.

Ah, well, no use running over and over my fears. I'm scared, it's true.

But I'm also very desirous of pursuing this opportunity... I mean, is it just coincidence that I'm being encouraged from so many sides so strongly, so seemingly suddenly?

My friends have come up with a domain name for me-- Fibro Warrior Princess. It's a nickname they bestowed up on me, and I love it. Then they said I ought to use it as a domain name.

You know what?

I think I'm totally going to go for it.

Watch out, world-- the Princess is on the loose! ^_^