Profound

It's been a rough week. Very, very rough.

I woke up on Friday with a sore throat, feeling slightly congested. I was irritated. A cold? The flu? Why? And why now? My BFF, the Archaeogoddess, is here, in our tiny hometown. For the first time in four years, we are on the same continent, just minutes from each other, and I have big plans to spend a lot of time with her. As much as I can manage. I want to grasp every moment I possibly can. I want to chat with her husband. And I desperately want to meet her baby daughter. It is agony to have your best friend have her first baby when she is so far away. So, I resolved...I just would not get sick. That's all there was to it.

Bring on the tea, and the rest. Think positive.

Useless. Of course.

Saturday I felt worse and by Sunday, I knew it was Strep at best, though I began to suspect it might be worse. I knew I had a doctor's appointment on Tuesday, so I thought I'd suck it up and hold out until then. One of the big disadvantages of small town life is the lack of an Urgent Care facility. Basically, if you can't get an appointment with a doctor if you need one quickly, your only other choice is the Emergency Room. I've been told time and again not to wait too long before making this choice. Doing so puts me in a bad place. My pain levels grow, my exhaustion deepens, and my immune system, always wrong, always misfiring, will completely go haywire.

Monday was horrible. I had a fever. I also had an afternoon planned with the Archaeogoddess her husband and Spawn. But, besides the risk to the sixth month old baby, The Archaeogoddess' brother has just recently had chemo, and though he is now cancer free, his immune system isn't in great shape. I can't justify the risk of that exposure, so I cancelled. And then I hung up the phone and cried. I sobbed and hurt so much. I hadn't felt like that since...well....since the god awful break up with the EG. Maybe not even then. I just felt so angry and hopeless, and so completely and utterly sad.

Being chronically sick has robbed me of so much, and now it's stealing the few precious hours I have to be in the same room with the person I love most in the world, after the Midget. I got home that day from having to accompany my cousin and her daughter to the dentist (long, long story) and took a short rest and woke up and realized that waiting just the 18 short hours to the following morning's appointment was a bad idea. My chest started hurting and I was coughing up green mucus. I could not wait.

At the ER, I was lectured about waiting and diagnosed with bronchitis and a sinus infection. I was given high dose antibiotics, a pain shot and a higher script for prednisone for the week. I went home dejectedly, and a little giddy from the pain shot, and called the Archaeogoddess and told her I'd have to put off the visit, and what with Thanksgiving and all, I might not be able to see her until Saturday.

This morning's doctor's appointment was for my disability paperwork. My doctor wanted to see me before he filled it out, to really get a clear idea of my physical state as it applies to tasks... It was entertaining to hear him complain about the hoops that someone who is sick has to jump through to get the help they need. And then he said something to me that he'd never said before. He looked me in the face and said "In my opinion, you have a profound level of disability."

Profound: a : characterized by intensity of feeling or quality

b : all encompassing : complete <profound sleep> <profound deafness>

I know this. I know that I am unable to do more than the simplest tasks without exhaustion, pain and weakness. Grocery shopping requires two days of rest beforehand, and at least three days of recovery afterwards. Some days, simply showering takes all the energy I have. This has been my reality for quite some time now. And yet...hearing it from a doctor in that definite, declarative fashion was like a kick in the stomach. It literally took my breath away. This is real. I am disabled. A vindication of sorts after years of begging doctors to just figure out what's wrong. And a deep sense of loss.

When I remember the person I was before all this started...it hurts. I miss my old life, my old self, in a physically painful manner. I miss my friends, I miss having a social life. I miss hiking and camping. I miss working, and feeling like I did something that mattered. I miss being able to clean my house from top to bottom in one day. This is what being sick has taken from me.

I know, though, that I am blessed in so many ways. I have so many amazing people in my life who love me. I have my beautiful, fantastic daughter. I am not homeless. I can see and hear, and walk (as long as it's not too far, doesn't have anything to do with stairs and hills and I can rest when I'm done) and talk. It could be worse. But, that knowledge doesn't really make it easier to be sick.

Thanksgiving is my favorite holiday. I love the food, the family. I love the sense of tradition in our family on that day, being together, laughing and enjoying each other's company without the stress of Christmas and all it's commercial burdens. I usually cook the vast majority of the meal. This year, however, I am making only stuffing and rolls. I won't be up early in the morning to get the turkey in the oven. I won't be cutting and peeling sweet potatoes or mashing regular spuds. And I'm pissed because I love doing those things, but I just can't. If I want to have a fighting chance at being able to have a party for the Archaeogoddess on Saturday, I have to rest and conserve energy. I have to accept the reality of sitting on the couch with my heating pad while others cook.

I am so sad. I feel hollowed out and bereft.

Tomorrow, I'll get up, get dressed and smile. I'll go to my sister's house and enjoy a Thanksgiving dinner with her and my niece and my daughter. I'll remind myself of all that I have to be thankful for, and look forward to seeing my BFF this weekend. I'll breathe in and out. But, tonight, I feel profoundly alone, profoundly sad, and profoundly bereft.

Fuck off, Diabetes...

There will be no funny or witty in this post. I'm warning you now, and I'll likely take it down, but I need to get this out, need to know that someone in the universe is hearing me, and I need to do it in a place the midget can't see it. She doesn't read my blog. It's not allowed, and it's blocked on her computer. I do that so I can say nasty things about her other parents, post not so appropriate pictures of myself and have a corner of the universe that I don't have to censor myself in relation to her.

It's 1:30 in the morning, and we're having the worst diabetes week we've had since diagnosis. Insane blood glucose numbers, ever increasing insulin needs, ketone testing...and the endless blood sugar testing. My daughter is a pin cushion, and I hate myself each time I jam another needle into her skin, when she winces, but doesn't say anything, when it hurts badly enough that she says "Ow, that one hurt," it feels like razors cutting my heart to ribbons.

170 days since diagnosis. 170 days since I leaned against the wall in the hallway outside the emergency room and allowed myself the luxury of five minutes of tears. 170 days since I called the exgirlfriend and the midget's father in the middle of the night and told them to get to the hospital NOW! 170 days since I watched them strap my daughter to a gurney and load her into an ambulance. 170 days since I heard the term "PICU" and realized that's where my daughter was going. 170 days of trying to readjust to normal, and realize that nothing was ever going to be normal again.

170 means at least 700 finger pricks and 700 injections. And that's assuming that every day we only test four times and give four injections. Which never, ever happens. When she runs high, I give corrections, then check again to see if she's come down. When she runs low, I give sugar, then recheck to make sure she's gone back up. Not even six months in and she's had 1500 holes poked into her body.

I'm sitting here at 1:30 in the morning waiting for it to be 2am so that I can test her again, and then lay down and try to sleep, but I know that I will instead spend the rest of the night waking up every thirty minutes to make sure she hasn't gone low in her sleep, because she doesn't wake up when she goes low while sleeping, which could mean...I can't even bring myself to type the word, can't bring myself to use it in conjunction with my beautiful, precious daughter...but it would be bad, very bad.

On the other hand...when she runs high all night like she has all this week, I think about all that sugar in her blood, and the damage it's doing to her body, knowing that it's coating the blood vessels in her heart and her eyes and her kidneys, another layer of damage, bringing her that much closer irreparable harm. It sickens me, makes me physically ill, makes me want to scream and cry.

170 days of wishing that I could take her place for each finger stick and injection. 170 of wishing I could take away her diabetes. 170 of wishing there was a cure...

Can't Sleep...The Christians will get me...?

So, last night the midget slept with me. Her blood sugar was high and I had to give her a correction at bedtime. She's gone low at night a couple of times, which is scary because she doesn't wake up and feel the low.

Anyway, she was not falling asleep, so I put a documentary on (Love that Netflix streaming on the Wii) and she was out in five minutes flat. I left it on for background noise while I trolled the message boards for parents of children with diabetes. Not trolled in the Craigslist sense of the word. I WAS NOT looking for hookers or meth or goats...I just wanted to talk to someone else who was also not sleeping because of diabetes (Damn you, Diabetes!!). But, I got sucked into the documentary.

It was the stuff of nightmares. "Jesus Camp" is a look at the complete and utter mindwashing that goes on amongst children in Evangelical churches. These kids are crying about their sins, having convulsions as "the spirit moves them" and speaking in tongues. It made me physically ill. Small children, who should be worrying about how much money the tooth fairy is going to leave them, are crying because they "sinned." They used a bad word or had a mean thought.

Now, I'm all for religious freedom. I'm not religious myself, but if someone else wants to have faith, and chooses to live his or her life according to that faith...Hey, knock yourself out. Your faith says you need to pick up the poisonous snakes to prove that you have faith?...Umm...okay, but I'll be over here out of reach of the fangs, 'kay?

However, this goes beyond having faith and teaching children about that faith and crosses the line into child abuse. Pulling kids out of schools so you can teach them that evolution is a "belief" while creationism is "fact" is simply wrong, but you have the freedom to do it. But when you start telling kids they are bad for having mean thoughts, that they are bad for thinking about sex, that they are bad for doing doing any number of things that are natural and normal parts of child development you are warping their fragile minds. You are teaching them to hate themselves at a fundamental level. A developing boy can no sooner stop thinking about his female friend's developing body than he can stop breathing. Human beings have natural, inherent behaviors and instincts and labeling them as wrong does nothing but set a child up for the worst kind of self-loathing imaginable.

And this movement, the movement aimed at these children, was designed with a purpose. The ministers themselves admit to designing this movement with the sole intention of "reclaiming our Christian nation." These are the children who are supposed to grow up, become our nation's leaders and lead the country into the path of light. Furthermore, these ministers make it clear they want these children trained, as the children of Islamic extremists and terrorists are trained, to fight and die for their faith. Even when there is no threat to their faith besides the fact that there are people in this world that don't have the same faith. They want all Americans to be Christian and to be Christian in their way, and frankly, they don't care about the children themselves, about what the price is for these children who will be raised being told that the world is this "one way" and then venture out into that world to find out that there is no "one way."

These people are making these children into fanatic Christian zombies. When the zombie apocalypse comes it's not going to be decaying corpses shambling after you craving your brain...it's going to be neatly dressed white kids in khakis and button down shirts...but they'll still be after your brain.

I'm investing in a sturdy helmet and reruns of The Family Guy. Hey, when the Christian zombies attack...at least I'll be safe on my mountain with dirty cartoons to fight the mind melting attacks of the Christian Right.

I Can't Decide If This Is Sad or Funny

Why The Queen of the Universe Should Really Learn To Read Labels

So, the other night, when this cold kicked in, I was coughing up a lung and in an effort to keep from dislocating something I went looking for cough syrup, and when I found some in my medicine cabinet, I did a happy dance (which caused another coughing fit....idiot) and promptly dosed myself, then went back to bed where I waited for the coughing to subside so I could get my three hours of sleep. The coughing kinda slowed, but sleep eluded me...also I started to get the urge to organize my kitchen, at like 3 am. At which point, I went back and read the label on the cough syrup, and there, in bright bold letters it said...Non-Drowsy formula. So, I read the ingredients and there it was...ephedrine. Shit...

See, I have no thyroid, and I take thyroid hormone replacement, and one of the first things you learn when you are taking thyroid meds is that all the good cold medicines, you know, the ones that contain ephedrine that make it so you can breathe and all that are kind of off limits. So, I haven't had any ephedrine in years. It was like someone shot speed straight into my nonexistent veins. So, there I was at 3 am with a racing brain and weak and tired body, feeling very spacey because I was all hopped up on cough syrup. I'm sure other people would have handled themselves maturely, but, me...I cruised the internet and ended up on Craigslist in the personals section. Which, really, isn't so unusual for me. I spend a lot of time trolling Craigslist looking at the all the animals I want to adopt, but can't and reading the silly and misspelled, grammatical nightmare ads in the personals section. But on this particular night, someone was clearly fucking with me. Because they obviously knew that I was hopped up on cough syrup, and had posted a rant against bisexuals.

Now, I've posted before about how much it kinda sucks to identify as a bisexuals, so needless to say, in my addled state the rant, which was vaguely illiterate and ridiculously insulting struck a nerve and because I was hopped up on cough syrup kinda ticked me off...particularly this part...

when you're bisexual or a man looking to molest, rape, or whatever you predators do

Umm...what?!? What the fuck is that? Because I like women and men I'm a predator??? Now, normally, I'd laugh and shrug this off. I mean...we are talking Craigslist...you know. the site where you can get a goat and a used vibrator and hook up with meth-seeking hooker, all for free? Not that anyone should do any of those things, and probably not all at once, but, hey, I'm not here to judge...well, except the goat part. Leave the goat out of the equation. I mean, if you want to hook up with a meth-seeking hooker and use someone else's used vibrator, by all means...but leave the goat out of it, okay? We have to draw the line somewhere...

So, okay where was I? Oh, right...getting all worked up because some anonymous Craigslist idiot was calling bisexuals predators. So, anyway, because I was hopped up on cough syrup I got the idea in my head that for some reason I could educate this woman about how bisexuals are people just like anyone else. I wrote her a very polite e-mail explaining that bisexuality was as valid a sexual identity as lesbianism and how I was sorry that some bisexual girls are skanky asshats who use lesbians as experimental objects, but how we weren't all like that. To which she replied that I was a dirty slut.

Erm...okay...I've slept with all of two people in the last 13 years, but I'm a dirty slut?!?

A rational person would have given in at this point. Okay, a rational person would have never gotten involved in any of this, but you get my point. But, since I'm me and I was all hopped up on cough syrup (Did I mention the cough syrup yet? Because I'm certain that the cough syrup is why I did any of this, not because I'm a somewhat irrational drama queen.) I wrote my own Craigslist post, asking lesbians to be somewhat more understanding of bisexual girls and admonishing bisexual girls to stop posting ads looking for a "gift" for their boyfriends and posting pictures of their vaginas. Seriously? I was trying to reason with strangers on Craigslist.

Needless to say, I got lots of replies, ranging from "Shut up, you dirty bisexual pervert" to "thanks for standing up for bisexuals" to "I'm looking to surprise my boyfriend with a threesome, here's a picture of my vagina." I finally took down the ad because I get enough spam in my inbox, and it was confusing and upsetting to read insults in one e-mail, propositions in the next and heartfelt thanks in a third.

So, what have we learned, dear readers? We have learned that the Queen of the Universe needs to read labels before she ingests cough medicine, that Craigslist is a black hole of all that's wrong with humanity, that the Queen of the Universe is open-minded to other's sexual perversion so long as they leave the goat out of the equation and that it's probably best if none of this ever sees the light of day.