Wednesday, July 24, 2013

Reclaiming my talky-blog

I’ve managed to, more or less, keep my specialty blog (Grateful Little Victories) going for over a year, but sometimes I want to say more than just what I put on a notecard. Every time I think about that, I remember my old blog, and consider fixing it up and using it again. Overnight, I did just that.

This won’t be a strictly updated blog, and it won’t be strict to a specific format or topic. This is where I will put things I have thoughts about, regardless of what those things are – could be faith and religion talk, could be disability discussion, might be politics, or somewhere in the middle of all of the above. Or rather, it will be one of the places I put things I have thoughts about. My most personal stuff will still be on my LiveJournal, my bite size thoughts will still be on Twitter, and the majority of my fandom-flail (and endless amounts of emergency cute) will exist on Tumblr. Many things that exist here will also exist on LiveJournal or Tumblr, so if you already follow me there, you’re probably okay. No promises about always mirroring posts, but it’s likely to be the norm.

I’ve copied over the talky-blog bits I’ve written in the last 7 or 8 months, and it totals 5 posts so far. Everything prior to December 2012 is ‘old blog’ stuff, and is now tagged ‘archived’ as it is the archive of what was here before I rebooted the blog. There wasn’t much, granted, but I wanted a fresh-ish start.

Saturday, July 20, 2013

My thoughts on faith, science, and death & dying

Damh the Bard presents Druidcast, episode 76


As so often happens, I love this month's Druidcast. As per usual, Dave puts together an excellent intermixing of music and pagan lecture in the monthly podcast, but this month's lecture really got to me in particular. Kristoffer Hughes is a speaker that I dearly love listening to whenever he is featured on Druidcast, and this was no exception. The topic - pagan ways of handling death and dying - was a heavy one, to be sure. But some of the things Kris says through the talk really got to me on more than just a mystical woo-woo level. He managed to put into words the connection I feel between my scientific mind and my spiritual heart.

For example, one of the points he brings up late in the talk is the fact that carbon is formed in the heart of a dying star, and that we are all made up of a load of it. And what magic that is, to know that what our bodies are made of was made by the universe.

We live on a planet that revolves around a burning nuclear fusion. Every single carbon molecule in your body is a product of death. It came from the belly of a dying star, and it's finite. There is only a finite amount of carbon in our universe, and a load of it is in your body right now. Magic. Pure, utter magic. And I love the fact that we're surrounded by - whatever we see, wherever we look - it's magic. And you're a product of that. And when we embrace that, I would challenge you: burn brighter. Bring more color into this world, because you come with a huge, whopping responsibility: the ability to respond to the fact that you, every single one of you, is the universe singing in praise of itself.

It reminds me very much of one of my favorite Carl Sagan quotes,

Some part of our being knows this is where we came from. We long to return. And we can. Because the cosmos is also within us. We're made of star-stuff. We are a way for the cosmos to know itself.

This is a great illustration of what I try to explain to people when they express surprise that I am both very scientifically-oriented, and also intensely religious: just because I can explain something in scientific terms and both understand and believe the explanation to be true, it does not follow that I cannot nor need not find a deep spiritual truth - and yes, magic - in the same experience. Faith and magic are not ways to fill in the gaps that exist in current scientific explanation - they are an adjunct way of understanding, existing at the same time, and with the same value to me.

When my mother died, coming up on 10 years ago now, I side-stepped my grief for a year. I didn't have time to grieve, after the initial week and change I had off from work, because I knew it would incapacitate me. I was a nurse, I knew what death was, why things had happened as they did, and I was the one to make the call about not engaging in 'heroic measures' at the end. I should be able to deal with it rationally, shouldn't I? Only I couldn't. When I finally let my grief out, finally honored the relationship as Kris says in the talk, it wasn't with my rational nurse-brain self, it was with my intensely spiritual self. I cried, I prayed, I sang, I screamed. When I dealt with death, it was as a pagan. That's what I needed then. The scientific brain did not offer me the comfort I so desperately needed to come to terms with my mother's passing, but my spiritual, pagan heart did.

Sunday, June 30, 2013

Teach young women in sf/f that they CAN protest

There is a lot of talk online right now about women being sexually harassed at conventions - a lot of thoughtful, important talk. These people talk about it far more eloquently than I would, so please, read the following links. Scalzi, Jim C. Hines, and Seanan McGuire all include the text of Elise Matthesen's account of being sexually harassed as WisCon and her subsequent journey through the formal reporting process.


Laura Anne Gilman

Maria Dahvana Headley

Cherie Priest

Cat Kimbriel

Amy McNally

Jim C. Hines

Seanan McGuire

At 17, at my very first convention (Duckon, 1998), I had people making inappropriate sexual advances, some of it probably qualifying as harassment - I didn't realize at the time, as I was in a new environment, with new people, new modes of communication, and I just didn't know what to expect. I was with people I knew all weekend, however, so anything that happened was relatively low-key. (Remarkably effective, having your god father standing behind you to stare daggers at anyone who looks too long at your chest, really.)

The next year, I was at the convention alone and I know I was sexually harassed. An older man had been flirting with me all night (this being the time in my life when I felt you didn't need to sleep at conventions, so I just stayed up for 3 days, wandering the halls at night), and after deciding I was done dealing with him and turning to leave, he stepped up behind me, pressed against me, grabbed my shoulders, and leaned in to (presumably) whisper sexy things in my ear. I stiffened, tossed my head back a little (didn't hit him - too small a movement), and said, "Let go of me." He did so, but didn't move, so I did. He muttered, "Sorry" and I walked away. He carefully didn't come near me again that weekend, and actually hasn't talked to me since. He sees me, obviously recognizes me, but never approaches me. I wish all harassers behaved so after being told off. (Incidentally, this same guy was the reason it took me some years before I agreed to go to a Poly Party at a con - he was the first to invite me to one, and he made it sound like I was being invited to an orgy, not a party with food and socializing.)

At 18, alone at Duckon, I didn't even know what Security was, let alone that I could go there to report something like being sexually harassed. I've been going to conventions for 15 years now, and I've got a better idea of what each department is, and when it is appropriate to contact them. I didn't have people around me that second year, and I hadn't gotten any 'social inoculation' from my friends the first year, so I was extra vulnerable to creeps. Now, I actively try to inoculate my friends and be a buffer for them at conventions. If something happened to me now like what happened at 18, I would know to find a member of Security to report it. Whether that would be my first instinct or not, I don't know. I hope so.

Edit: As Amy McNally pointed out to me, there are a couple of excellent additions to the above list of links. Maria Dahvana Headley posted a follow-up entry on how not to be a creeper, and Ursula Vernon posted a third-party account of convention harassment and what YOU can do if you witness things happening to other people.

Monday, May 06, 2013

In response to Dr. Rob

A Letter to Patients with Chronic Disease

It is frustrating to have medical providers not understand my chronic conditions, not know how they interact with other problems, and not grasp the gravity of certain things happening to me that might be No Big Deal for patients without my particular problem list.

That said, I'm inclined to be lenient. Maybe it's my background as a nurse influencing things, but I don't expect people to be constant walking encyclopedias of information about every possible condition. My doctors do pretty well with common conditions like arthritis and fibro and asthma, but when it comes to things like EDS? When I first walk in, a small minority have ever even heard of the disease, let alone treated one or more patients with it. I sigh a little, then start politely educating them about the condition, offering places online they can find out more, etc. Generally by the 2nd or 3rd visit, they've got a decent handle on things, at least in theory - generally takes a bit longer for it to really gel in practice, as they treat me and see the way EDS affects my life.

I've seen a bunch of negative comments on Tumblr and on the original article about, "Oh, they just want us to stroke doctors' egos!" but I really don't think that's it. I think the major point being made wasn't that doctors need special treatment, their egos stroked, or us to be quiet little patients that do as we're told, but more that doctors are people too. Ditto nurses, techs, etc.

People are scared of the unknown, particularly when the unknown could result in them unintentionally hurting someone else. People don't like to be reminded of how fallible they are, of how much they DON'T know. And people especially don't want to be confronted with how much they don't know in an angry, rude, or confrontational way.

Now, if I see a doctor multiple times, and that doctor doesn't make any attempt to learn about my conditions, or makes assumptions based on incomplete information and as a result makes bad decisions regarding my care, I am not going to keep quiet. That indicates to me that the doctor doesn't care enough to learn more than they already know, and I don't want to be treated by someone who doesn't care enough to learn. But the first visit or two? I give them some leeway, because they don't know me, they may never have seen someone with my condition before, and hey, maybe they will listen and then go get more information. If not, well, someone else can have them.

Tuesday, January 08, 2013

A rant about listening to your patients and being respectful

I have Ehlers-Danlos syndrome.

I also have IgG deficiency.

This means I need to have regular blood work drawn to check my levels (so that I only get IVIG when necessary). But, the EDS makes it damn difficult to get a good vein stick. My record is currently 15 sticks before a good one to get blood/insert an IV. Several people get regular blood draws in 1 stick, generally if they're careful and confident. I average 2-3 sticks for each blood draw, however.

I know my body's quirks, honest. I've been in it for 30+ years, getting stuck for blood work/IVs regularly for the last 20+ years. I know where my best veins are, what tricks work the best to get them to cooperate, and what things are most likely to make them blow out/collapse. Those people who get me in 1 stick? They generally listen to me when I tell them these things.

I went in to have my blood drawn for a check of my IgG levels prior to my office visit this week, and it took 4 nurses and 7 sticks to get just barely enough blood for a CBC and IgG level. Those 7 sticks? They didn't actually upset me, in themselves - as I kept explaining to the nurses, I don't get mad when people have to stick me multiple times (that's just a fact of my life), only when they don't listen to me. After today, however, I've got a few more things that make me angry.

Nurse #1 went for the vein I told her to, but she was not very skilled and spent several minutes digging around with the needle before finally blowing the vein out. As she was doing so, she kept saying, "I keep asking the Lord God to guide my hand, but He's just not listening." -- No. Just don't even don't do that. I really get faith, I do. But there are these things called skill and competence in your job that I'd rather you have first. If you don't feel you have the skill to do what you need to do, and God needs to intervene, please find me someone else. And if you feel the need to pray while you're drawing my blood, please keep it to yourself.

Nurse #2 was the nurse who got my IV in the first time I came in for a treatment - she the one they call whenever they have a 'difficult stick' in the treatment area - and I recognized her when she came into the lab area. She tried to tell #1 where to stick for the best results on me, offered to do it herself, but #1 decided to try again while #2 watched. #1 kept apologizing for every little thing. For hurting me, for sticking me more than once, etc. I kept reassuring her that it was fine, that this is part of being me, that I wasn't in that much pain.

And then she started the repeated apology that got under my skin. "I'm so sorry - this really isn't normal! I normally get even difficult ones in 2 sticks!"

Really? I've told you over and over that this is normal for me. Guess what. I'm your patient, and this is normal for me - that make it your new normal. Adapt. And while you're at it, please stop pointing what a freak I am every other sentence. I know I'm not normal in a whole host of ways, medically, but when I say that something is common for me and you reply that it's really not normal, it's not great for my feelings of self-worth.

#2 tried the same vein as #1 first tried (why would anyone think it's a good idea to go after the same vein someone has already blown out?), and got a flash of blood, but no flow as it blew out in a second spot. Good job. Then she tried the OTHER vein #1 had tried, though I doubt #1 had hit that one. #2 didn't hit it at all, either. "It's like it just keeps disappearing. I can feel it, then it just goes away." I told her that my mother had problems with vacutainers collapsing her veins, and that it may be that I'm developing the same issue. She opted to go get another nurse.

I shed a couple tears in pain and frustration while they were out of the room, but was smooth-faced when #1 came back in. She looked at me, apologizing yet again for how long this was taking, etc. and saw that my eyes were a little bit red. "Oh no, did I make you cry? I'm so sorry, I didn't mean to hurt you." Sigh. Really? This. Is. Not. About. You. How dare you guilt trip me for crying? I'm being stuck with needles, repeatedly. I'm enduring tourniquets on/near joints that already hurt from arthritis and easy dislocation. I'm allowed to cry a little.

Nurse #3 listened to my explanations, opted to try my other hand, and stuck me between 2 knuckles and nowhere near either of the veins in the hand that people stick. It hurt more than any of the previous 4 attempts and (naturally) yielded no results, as it was miles away (relatively speaking) from the nearest vein. She gave up and passed it off to the next one.

Nurse #4 came in, smiled at me, and listened carefully to the things I told her. She immediately went to get other equipment to respond to the idea that vacutainers may be collapsing my veins. She tried one of the veins #1 and #2 tried and got nothing, then found a tiny vein in the front of my wrist that she was sure she could get. She was careful, gentle, made soothing noises but no repeated apologies, and finally got blood flow by using a manual syringe. I've got a few small bruises from where her fingernails were pressing into my palm to hold my hand very still to keep from compromising the blood flow. Nurse #1 was working the syringe to draw the blood, which was flowing, however slowly. She decided to switch to the vacutainer again - and got maybe 6-8 drops of blood before it stopped going anywhere. #4 knew what she was doing, got results, but #1 had to screw with it and make it unusable. Thankfully, they'd gotten just enough to run the tests they needed and I was allowed to leave.

Ehlers-Danlos means keeping the smiling, placid face on, even when I'm writhing internally from the pain - because if I show it, the nurse will become a distraught mess of apologies again. It means being able to lie with a level, measured voice, "I'm fine, it doesn't hurt" - because if I tell the truth, the nurse will become even more tentative and unsure of herself, thus hurting me more.

I left the office in angry-ranty mode. By the time we got through lunch and going to the store for a few things and some prescriptions, I was in sarcastic/cutting remarks about everything mode. By the time we got home, I was falling into the depressed, "why am I so broken" mode, which is where I am now. Sleep will help, I hope.