Monday, July 12, 2010

Malibu. In all the time I have spent at the beach, this is the first time I have ever seen a dead jellyfish. 7-10

Wednesday, July 07, 2010

You know why lying is bad? Because it makes the person you are lying to question their instincts. When someone lies to me, they are telling me I am not competent to judge character and I can't trust my instincts.

I mention this because doctors lie all the time. Well, they don't lie directly, but they lie by being indirect, by assuming you can't understand what they're saying and so dumbing it down or omitting info altogether. They tell you that you are wrong to question them, they tell you the way your body is behaving is normal and suggest you simply need to get a grip or stop paying so much attention to yourself or even go see a psychiatrist because, I guess, you would ONLY question their judgment as the result of mental instability and it doesn't matter if later you find you were right to keep pushing (right around the time you find you need more surgery or find the surgery you had was botched somehow or you are having an 'adverse reaction' of some kind) - they still suggest your instincts are wrong and you just need a chill pill (which they can prescribe for you if only you will give them some peace, already). Then they get upset because you don't seem to trust them.

Doctors can't handle not knowing the answer. The ones who really care about you (and I have one of these - I would cheerfully recommend him to anyone who needs a good doctor) want to figure out what is wrong with you because they want you to feel better (and they want you off their back). I have one of those systems that has always been susceptible to rare or unlikely problems. I get diseases people my age or gender aren't supposed to get, I'm allergic to things most people aren't, my body just does things that confound doctors and it takes them a while, if ever, to figure out what is wrong. I've learned to listen to my body and know when something is not right and it gets tiring having to fight doctors to make them hear me. Even the kindest doctor tells me that I am more likely to need a psychiatrist than believe me that something is really off and at this point, I do need a psychiatrist, but not because I am a hypochondriac.

I'm usually right when it comes to my instincts. They told me my son was ADHD and I knew, I just knew they were wrong and we were eventually proven right when he was diagnosed with Asperger's. They told me my oldest daughter was having migraines and I knew, just knew they were wrong. My husband got on the internet, researched her symptoms and we went to the doctors and said hey, have you considered Pseudo-Tumor? They took a look at her optic nerve and said hey, by golly, you're right. They told me I had indigestion until they looked at my stomach and told me they had never seen anything as bad as the inside of my stomach and had to remove things and fix things and etc. They told me I was addicted to painkillers when I said hey, there's something wrong and even after they found out my gallbladder had stopped working, they still said I was just drug-seeking. I told the doctors I was having trouble breathing, they told me I was an addict and tried to commit me to rehab. That night they found blood clots in my lungs. They told me I was probably addicted to drugs and my husband and I kept looking and instead I probably have scar tissue gluing everything together in there (though we are still trying to get someone to hear us on that one).

I'm not dependent on opiates, docs. I'm dependent on not hurting. If you have a way to make it stop hurting that doesn't involve drugs, I'm there. I'll try the psychiatrist and I'll do acupuncture or Chinese herbs or buy expensive teas at upscale malls if you want. I'll keep losing weight (too slowly), I'll rub my tummy and pat my head while standing on one foot if you want, but stop telling me how wrong I am or how crazy I am and stop asking me to trust you when you won't trust me. I want my fucking life back - do you honestly believe you want that for me more than I do or that you have more invested in my wellness than I do?

Tuesday, July 06, 2010

This morning, while I was trying to sleep and the bunny was trying to dig through the plastic bottom of her cage to China, I was laying there craving eggs. Thinking sunny-side-up, maybe scrambled with toast, but eggs.

I eventually fell asleep because my husband had covered the bunny so she would go to sleep and stop making all that noise. When I woke up again, he had made me an egg sandwich. I never mentioned wanting eggs - he just knew somehow.

We don't have time for romance these days. I do miss it, kissing for hours and not being able to get close enough to someone. I miss the tease of romance, the ache of needing someone's touch and dying to run my fingers through their hair. Waiting for them to please, please touch me already, all that. Kids and work and living paycheck to paycheck takes its toll.

When people rationalize affairs by saying they miss romance, I think of the way my husband works a job he hates to raise another man's kids or how on the 29th of every single month for the last ten years he has wished me a happy anniversary. I don't get love letters anymore, but I get egg sandwiches. It's as breathless a gesture as that first kiss, it really is.

Sunday, July 04, 2010

Oh, so I said the doctor is cute. I'm married. I would never in a million years break my husband's heart, certainly not for a cute Russian doctor (with hair any woman would scalp him for) who is himself married. If Harrison Ford rode down here in his leather jacket, tipped his fedora to me and offered to take me away from it all, I'd have to deny him (he's still sexier than most men in their thirties, if you're willing to overlook the perplexing attraction to Calista Flockhart, who must have a really good personality because as an actress, she's fluff.)

Shoot, now I'll get a note from Harrison telling me to "fuck off" because I said his wife was fluff. I'm sorry, Harrison, but she is - it's not like her star turn in "The Birdcage" broke any emotional ground. But ok, I apologize and hold no grudge. If Malibu gets hit by a giant tsunami, I'll zip on over in a motorboat and get the family and I'll be nice to Calista, ok? I'll try to delve the depths of the "Dancing Baby" bit, which I'm sure will one day hold great historical significance, if only as one of the first viral videos. I'll ask what it's like to be one of many actresses to do Laura and I won't chuckle when I think of the local radio station that held a food drive for her.

But I digress.

Saturday, July 03, 2010

One of Booty's babies, Smudge. Can you tell how abused she is?

I fell apart. Me, who survived my parents and rape and incest, who successfully ended a generations-long cycle of child abuse in our family, who fought and clawed and beat up every doctor, every teacher or bureaucrat who stood in the way of my children's needs, when it came to me, I just had nothing left. And the doctors I most need to believe in my strength see me as a weak, whiny twit maybe looking for her next fix, certainly not doing enough to fix herself.

There are times when I want to beat them for not knowing better, for the weak thinking that allows them the luxury of blaming my situation on me. Other times I want to beat myself for trusting them (one in particular) so implicitly. Guess who got beat up and ended up back in the old nutbarn? You got it. I soaked up their low opinion of me as though it were a chocolate sauce and I a sponge cake. I laid back and let them blame me for - god, for everything. Their so low opinion of my character and strength, not remotely concealed behind a tissue thin layer of bonhomie and good natured tolerance of my wacky character mirrored exactly the feelings I have been fighting in myself all my life and I bought it. I almost died and it was all my fault. I am in constant pain and that is due to some deep failing in the insubstantial center of me. If only I would lose a little more weight, if only I were made of tougher stuff and smiled through the pain, if only I were not so sick all the time we would not be on the brink of bankruptcy and wouldn't it be best for all if I just - weren't a burden anymore?

And you know, nearly dying is no cake walk, but that isn't what really did it to me. It was that the people I most needed to see how strong I have been, how hard and savagely I have fought for an identity of my own, to raise my beautiful children, all they saw was the weakest possible image of me and they felt more than disdain. They wrote me off with disgust.

Now I don't know who to trust, who to talk to, whether to talk to anyone at all. Maybe I should embrace the pain for my husband's sake. Certainly I need never to look at another damned opiate. And all involved, the doctor who has no real idea what is wrong with me and my darling husband - all have pinned their hopes for my rehabilitation on yet another doctor who I will go to see not because I believe he can help, but only so that no one can accuse me later on of not doing all I can to reclaim that healthy rosy glow.

God, I'm so angry.

Sunday, May 02, 2010

My son took this pic a few days ago. Not bad for forty-six, huh?

Monday, April 19, 2010

It's been seven months since I last wrote in here. There have been a lot of surgeries, a lot of doctors and a lot of bills and I remain as sick as I was when it all started. I'd tell you what was wrong, but I don't know. A dozen doctors, three hospitals and I still don't know because they don't know.

Least I can admit that - I don't know what is wrong.

I can tell you I am close to getting to go home again, after they put a filter in my vein or artery to prevent any more clots from making their way to my lungs. Of the last eight weeks, I have only been home three days. I ache to go home. Home sweet mess. I want to be home with my husband and kids and cats and rabbits and birds and all the noise and fuss and mess. It's my mess. Frustrating as it is to note someone who did not do their chores, if nothing else, it is our mess. It belongs to me. It's normal, all that fuss and noise. But when you have been in the hospital long enough - and on the meds long enough - you get to where you feel, walking into the house, like you're a guest and don't really belong anywhere.

I belong at home. I want to go home.

Saturday, September 05, 2009

On my balcony. They're everywhere this year.

Sunday, August 30, 2009

In my sister's tree.

I'm going back and forth between her new place and mine, keeping an eye while she tends to my ever-worsening mother. This has been mostly ok, except that I miss the kids when I'm not around. The quiet has been good and I have slept better than I did at home (my cat stayed home, so the three AM insistence on my attention has been absent). The only real problem has been that we're on fire again out here, and her new place isn't far enough away to spare us all the heebie jeebies.

Last October, she lost her home, all her animals and two of mine in the arson fires that ravaged Sylmar. Hers was one of four hundred homes lost over a few days. I watched on the news - we watched her home burn. When I got to her, she was in a motel room with my mother and her husband. She hadn't seen her home go up, because she was still trying to find a way to get back into the park to try to rescue the animals. They wouldn't let us in to check, they said it was too dangerous. We got them to agree to put out food and water for the animals, in case any had gotten out.

The next day, she rented a truck and we drove from one pet store to another buying pet carriers. At the Porter Hills PetCo, the fire burning there almost got us evacuated before we could pay for the things. But we got them, dozens of them, and drove back to Sylmar, where we begged and pled with the firefighters to please please, just let us check. They eventually got someone willing to take us up, but only if we promised not to get out of the car if they thought it was still too bad. Deep inside I knew - I had seen her house burning and I knew nothing could have survived that, but her need to hope, to believe somehow that her babies were ok, that they hadn't died the worst kind of death, frightened and wondering why she wasn't coming to save them, it was hard not to hope with her.

So we got up the hill and we didn't have to go far - you could see from the end of the row that the house was gone. They wouldn't let us get out to see if any had survived. They turned around and I spent the next few days trying to keep my sister from killing herself. She tried so hard to get the animals out but they gave them no time - there was just no time. My mother is elderly - between that and all the medical equipment that had to go with her, there was just no time. She felt and always will feel responsible and that it was arson only makes it worse. Me, I'll always feel awful for the two I sent up there and be so grateful I didn't send the others - a new litter had sown up with an orphaned cat I took in just a few months before the fire and there was talk for a while of my sister taking them.

When they finally let everyone back in, we spent weeks up there, calling for the animals. The firefighters only ever found two alive. One is alive today. The other was my sister's favorite - he lasted long enough for her to find him at a vet and sit with him till he died. His paws and lungs were burned badly and he held on for her. He started purring when he saw her and she sat with him every minute - that hope again, and all she could do was be there to make dying easier.

I wanted to believe the animals all found their way out. But we found remains, you see - we know how they died. There's no fooling ourselves that the smoke put them to sleep before the fire could get them.

Now here we are, almost a year later and the sky is dirty yellow with smoke from someone else's home going up, someone else's things being lost. It's hard not to remember the frantic drive looking for pet carriers. The new fire is miles from where she is - but it's burned miles away from where it started. They're funny, fires - they have a mind of their own and they think rings around the firefighters. So here we are again, glued to the news stations, calling back and forth for updates, aware we're probably safe but staying vigilant because we know how high a price will be paid if we look away at the wrong minute.

Monday, August 17, 2009

I'm letting myself be dragged down by everyone else's needs. I've been roped into something by my sister who, though she has only the best possible intentions, can't hear me screaming no (in part because I sometimes mean yes). I'm being fairly drowned in guilt by my twenty-two year old, who has reverted to her first day of kindergarten. At the heart of all this, I am supposed to be taking care of me and find myself doing anything but. There has to be some pathology there, something about using their stuff to avoid my own, or self-esteem issues, but it all evades me.

The thing I wonder most about right now is do I really need all the work the surgeons suggest I need? Do I need it or am I acquiescing because it would mean a break from the guilt at home? There is no denying that the best part of being in a hospital is their only focus is you - you are suddenly the highest point on the totem pole, they'll be strong for you and you can go ahead and close your eyes without first wondering what everyone else is up to. I could go to a spa, but it wouldn't be the same - to be truly guilt-free, the separation needs to be beyond my control, not a choice I am making.

I love them, would not trade a day I've spent with them, but twenty-two years of special needs kids can make you yearn for babying. I'm not the kind of mother who easily steps back - I have to be yanked, nails gouging the walls, away from my kids before I allow that taking care of myself is maybe the priority, right now.

Sunday, August 09, 2009

My tattoo and the image I took it from. I had to photoshop out the extra ducklings (I have three kids) and fix the areas where they were - I think the guy who did it did a terrific job with detail. It's perfect- I've always called the kids 'my little ducklings,' and I adore the Stitch character. Got Stitch toys and coffee mugs and little figures. Stitch all over the place. Fell in love with him from the first frame.

Tuesday, August 04, 2009

At a nearby park.

My oldest daughter got her first, paid, acting gig. Once she gets paid, she gets to join AGVA, a bona fide actors union with benefits. It's been a tense week since her audition - she was so afraid she wouldn't get it. She auditioned for the same part last year and didn't make it, but I had a good feeling this time. No anxiety over how her self esteem would handle another rejection (why do people with shaky self-esteems always seem to choose professions like acting?)

In any case, I was in awe of her courage - where did she get the self-confidence to put herself out there that way? To put away the defenses and masks she has acquired over the years and let her best self shine through? What a strong, vulnerable thing to do. It's not that I am surprised she could do this, it's that I'm surprised I raised someone who could. How did she learn such bravery from me, who put on her masks long ago and never took them back off?

Then I realized that she has watched me be brave and strong in other areas. She's watched me try to start two businesses and work like a dog over them. She's watch me have to fight like hell to get her and her sibs the care and treatment they need for years. She watched me lose eighty pounds and bounce back from a couple near-death hospital experiences, only to be cheerful and pragmatic about the next one. And she's seen me be the backbone of this family, the strength for everyone else when they couldn't find their own.

That's a nice thing to realize. I'm reminded of the way she has always watched me, all her life. The way she would study me when she was little, the way she would try to be my opposite in her teens, but always, always watching. I was so afraid that she would learn to be afraid of life, because I always have been, but she saw something else and took that, instead. I just fucking love my beautiful, strong, discerning kid, you know?

Monday, August 03, 2009

I was feeling pretty hopeless when I started writing here, again. I felt like every door I needed to go through had been closed, locked and nailed shut. I was thinking in terms of how to settle my shit so my kids would be ok. Some of that was melodrama, fair enough. Some of it exhaustion, some of it feeling sorry for myself. But no small part of it was being very ill and not having any more energy to fight the insurance company.

Then help came from a very unexpected source. My dad, who I love but have been at odds with all my life, took one look at me, put his arms around me and said "where do I sign?" Didn't even ask me what I needed the money for - just said sure, I'll put my house up as collateral and can I get you a soda? It's entirely out of character for the man I've known all my life and it makes me wonder, all over again, if he and I would have had a chance if my mother hadn't been such a damaged woman.

I haven't forgotten everything that has passed between my father and I. I still bear the scars, am still colored in everything I do by his influence and choices. But this man, who just found out he's almost certainly lost his pension to the economy, who still has a scar on his leg that I put there (the last time he ever hit me) and filled us all with such dread just by coming home a little too late after work (little too late meant he stopped at the bar), he took the same arms he once used to throw me through a wall, put them around me and offered his own security with no questions asked.

Wednesday, July 29, 2009

Doesn't it look like the roots are dangling their feet in the water?

My younger daughter is struggling so much right now - she's been living with debilitating pain for years, pain none of the bastards treating her have been able to change or fix or anything else. We've seen neurologists and pain specialists and endocrinologists and psychologists and Chinese herbalists and all of them may as well have been voodoo doctors sticking pins in her for all the relief they provided.

She's had to quit school and hasn't been able to work for years because it was just too much for her system. I've pushed her gently to keep trying, but not too hard because I don't know how much is too much, what is fair to expect of her, what is fair to ask her to endure in the name of what just seems an endless series of hoops she has to jump through in the name of proving what a trooper she's trying to be.

Still. if they can't put a name to her pain beyond 'pain thing' and can offer no hope that it will end (not knowing what triggered the thing they can't diagnose, they can't tell us when or if it will ever stop), she has to find a way to have a life with pain. Millions of people do it - millions of people with terrible afflictions manage to have jobs and families, etc.

The truth is, she's scared. She's afraid of going back to the way it was when the pain was at its worst and she would lay on the couch begging me to do something to help. Just as pointedly, I'm afraid of it. I have never, ever felt so useless and impotent as when I sat, not even able to stroke her hair because my touch hurt, and had to tell her I couldn't take her back to the ER because the narcotics that made the pain go away were messing up her organs. There's nothing worse than watching your child beg you for help that you cannot give. It sometimes feels like watching her die would have been easier, because at least she wouldn't be hurting.

I'm afraid to go back to that. To those days when she hurt so bad and was so terribly sick and getting sicker and no one could tell us why or help me figure out how to tell her no to the things that made the pain go away because they were also going to eventually kill her. To having to say no when she hurts, not be able to help her and sit listening to her cry, raging against the useless cunting doctors and the universe and our genetics and buying books and scouring the internet and lighting candles and trying to learn how to cast spells so I could make her better or trying to visualize sucking her pain from her into me, signing over everything I have to give to the devil or God or the universe if it would just make her feel better. Just a little relief, even just a little, just a night's pain-free sleep.

I learned to live with the self-loathing that comes from failing your child so completely. In fact, I castigate myself happily, willingly, because the punishment is the only relief I get from the guilt. She has to learn what her life is going to be if there is always going to be pain. So when she came to me and suggested she just couldn't take the stress because her head hurt worse than it had in years, I tightened the cilice on my thigh and reminded her that this happens every time she has to start a new semester, or think about getting a job. Suddenly her pain becomes nearly unbearable. I tell her that I know her pain is real, that there is a physical reason for it, but that there is also no denying the psychological component - when she is afraid, she hurts more. She's afraid to try to have a life and get cut down by being sick again, so her body ratchets up the ante in an attempt to avoid the risk.

I tell her that the truth is, this is going to happen every single time she tries to start a new job or school until she forces her way through it and makes her body get used to the idea that she can safely study or work and she won't end up back in the hospital because of it. She has to fight for her life, force her body to get through this or it never will. I tell her that she has already gone through the first five days - if she quits now, she'll just try again later and have to go through those five days all over again. I tell her you've got those first five behind you and if you just force yourself, I swear to God every day you go will get a little bit easier, hurt a little less. I promise her, because every instinct in my body tells me I am right. I tell her that she came to me for absolution - she wants me to tell her that it's ok not to go to work the next day and that I won't do it this time. I tell her she is an adult, now - she has to make this choice for herself, that I will love her no matter what she chooses, but that I believe in my heart quitting again is something she will regret forever.

Then I kiss her and tell her to go back to bed.

And the next morning, she got up and went to work and she hurt less at the end of the day and that night, she hurt less than the night before and she got up and went to work again. I take no credit for her courage or her choice - I told her the truth, that's all. And in the moment, when it felt like I was fighting her for her life, telling her the truth (instead of telling her to quit) was just as hard as telling her she couldn't have the pain pills. What I get to take from it is knowing that, in that single minute - when I found the strength to tell her the truth - I did not fail my daughter.

Tuesday, July 28, 2009

Another flower at Disneyland. Don't know what kind.

Everyone I know - all my offline people, all my online people - we've all moved from Starbucks and forums to Facebook. Well, they all did, anyway. I have a Facebook account, but I rarely use it for the same reason I rarely call my friends or hang out in my forums, anymore. Everyone wants to chat and be silly and I don't these days. I love knowing that I can read about what my cousin did today, but I don't want to have to write about what I did.

Well, here. Here, I can say anything I want and not have to connect with anyone. Nothing at all is expected of me. I don't have to respond to anything - I have no responses in me right now. Except for a very trusted few (who understand my silence), no one in the world who really matters to me sees these pages so they can't be offended or disappointed by them.

I miss my people. I want to know they are ok. I want to be there if they aren't. I just don't want to put on my game face to get there.

Monday, July 27, 2009

At first I thought they were a homeless couple, but maybe not. Maybe just hanging out at the park. The photo works better if they're homeless, though - doesn't it? There's a romance that seems diminished without the painful struggle.

I've been working steadily for the last nine months. It's the longest I've been able to hold a job for years and I'm very good at what I do. I've gotten so good that my boss has essentially handed one division of his company to my watch and I'm just loving it. Not the minutiae of it, but the competency. I've been battling impotence for so long - not being able to make my son whole, not being able to make my daughter's pain stop - I had forgotten what it felt like to be able to make something happen.

Too, I had forgotten what it was like to think of my own worth. For more than twenty years, my self worth has been wrapped up in my performance as a mother and I have judged myself very harshly. Suddenly, there's another measuring stick and while I'm not quite ready to stop castigating myself over the ways I have been unable to help the kids, I am ready to note that I deserve more money for what I do at work.

Tuesday, July 21, 2009

Near my dad's place in Tulare County, Ca. The beginnings of the wide strip of farmland that funds and separates the Californias (north and south).

So hey, turns out my tonsils are too big, my tongue too large for a small jaw (and oh shut up about that one, will you?), my uvula does strange things and my upper palate needs reshaping. More surgery, another overnight stay at Chez Hospital, all because I stop breathing when I sleep. For minutes at a time, there is no oxygen being delivered to my brain (or heart or lungs or anywhere else). The oxygenation of my blood should be around 98, 99 percent but during these apneic periods, it drops into the 70's for minutes at a time, until my brain finally sends out this !!!!YOUREGOINGTODIE!!!! signal that wakes me up, forcefully. I sit straight up in bed, gasping like I just came up too fast from several fathoms too deep, my body saturated with adrenaline and trying to combat the feeling I am in grave danger. I never know when I stop breathing, but I always know when I start again.

This happens five or six times, over an hour or so, until I give up and get out of bed. I rarely get more than an hour of sleep a night and I regularly go five days or more with none at all. My nights are spent watching the clock (to see if I slept and for how long) and reminding myself that, whatever my body may be insisting, I am not dying, everything is ok.

During the day, I fall into naps, alot. Short, useless naps that produce nothing more useful than another reminder that the old 'fight or flight' response is alive and doing well, thanks. I fall asleep when I am typing. You can see the evidence of my sleepiness when I write - letters or punctuation trail down the side of the page, the pen slipping as I fall into a nap, slipping and leaving a trail behind it that shows exactly when I started to nod. The course can be charted. I fall asleep when I am reading, or watching TV, or playing a video game or talking directly to you or driving down the street. I spend half my day nodding off and jerking myself back. My sister reminds me they use sleep deprivation as a torture technique. I can see why. All I want is to lay down - I remember only vaguely the feeling of falling into sleep.

I don't know yet if the oxygen deprivation has caused any long term brain damage (oh shut UP, will you??), but the doctors think there may be minor things with memory that may or may not resolve when I get some sleep (read: surgery). I know it has damaged my heart and lungs, which is why I'm taking on water like the Titanic, why I can't walk from one room to the next without having to stop to catch my breath, why I have angina. All of this may or may not resolve when I start to sleep, again. I'll either get better or I won't. I do know that between this and a couple of other, private things happening, if something doesn't change, I'll die. The doctor told me that last February - if something doesn't change, I'll be dead in a year.

I've always thought I would wake myself up when it happens, but it turns out that I might not one of these days. It can kill you - you can go to sleep, stop breathing, and simply just not start again.

I fell asleep writing this post.

Monday, July 20, 2009

Gift for my Father-in-Law.

My boss has given me a new duty- I now call the account holders whose cards were declined for their charges and say "hey - what's the deal with that?" This is not a job I want but it is a job I turned out to be good at. I don't think that says anything good about me at all. I may have a broad mean streak I can count on in a pinch, but it doesn't come naturally to me to embarrass anyone.


Privacy and control aren't all they're cracked up to be. I can't seem to confide in the people I want to talk to. Cathy, KC, deb, Baba - all of them have been sent to my emotional Siberia, where the fabric of our relationship is being worn thin and dingy by the elements - and you know they don't have Woolite out there. There's a part of me that wants to lay my head in a lap and cry out the whole stupid story, and I know they want to hear it, would be exactly as sympathetic as I need them to be. I know I can trust them with the truth and that, when they try to pry it out of me, they genuinely want to know what they can do.

But needing them feels gross to me. Needing anyone make me feel fat and slow and plodding and stupid. The truth is, most people really only want to hear your story once - very few people have the emotional toughness to involve themselves, to offer to be the ear you scream into at three in the morning. What most people really want is for you to have your flaws, but the kind that don't really require more than soothing platitudes from them. And therein lies my fear - I take them up on their generous offer to be my ear, and they get so sick of hearing my story they distance themselves with rolls of their eyes or little, barely concealed snickers.

Again, better to have you scoff at the useless minutiae that is diagnostics than to know my truths and reject me as whiny. So, much as I love them, much as I need them right now, I have pushed them into the farthest unreachable corners of my mind where they can't scorch me with their comfort or disinterest.

Thursday, July 16, 2009

On my balcony. It was a kind of gift - gift in the way some teenagers drop their babies off at fire stations. It was dying on my neighbor's balcony and I agreed to adopt him.

Five months ago, my doctor told me that I would be dead in a year if something didn't change. A lot needs to change that is beyond my control. The stuff within my control is - well, has always been out of my control. I realized a few weeks ago that I've been preparing to die. Every day I make sure my legs and pits are shaved, in case this is another day I end up in the ER. I've been thinking about making a 'Mommy Manual' full of all the ways I do all the things I do that keep things running without anyone really knowing how, but I keep not getting to it. Every time I try to turn my mind in that direction, my mind simply and slowly fades to static. Instead, I spend my time doing stupid things online like trivia quizzes, etc.

The truth is, I think part of me is trying to sabotage me, trying to kill me off.

This all sounds mysterious in a way I don't mean it to. It's not my intention to keep you guessing. It's an exercise in privacy and control. I want to keep some things private and this is one more way I can control a situation that often seems to have spun way beyond mine. When they stick a tube up your ass and pump your intestines full of gunk, you start placing a pretty high premium on privacy.

I'd rather have someone laugh at the diagnostics than sympathize (or scoff) over the diagnosis.

Tuesday, July 14, 2009

Took this at Disneyland a few weeks ago.

Been working, got a tattoo, been sick, had my son graduate high school, both girls have jobs. There's lots of stuff to say, but I still struggle with why it should be said here. Is it valuable to vomit my life into the void in order to see who can identify what I had to live that life - is this a piece of corn? a piece of momhood? meatcake? If I tell a new story about heart disease or sleep apnea or even emptying nest syndrome, is there anyone out there who still looks to blogs for answers or comfort or camaraderie? What's the point to relating another tale of illness or inevitability or impotence?

On the other hand, it's always been through the act of regurgitation here that I figured all the best stuff out. Also, I can't discount the value of being able to help people through the relating of my own experience.

Then again, there's nothing all that interesting about me of late.

Of course, there doesn't need to be. It's the garden variety sameness of experience that makes telling the tale so valuable.

I see a new surgeon, tomorrow. I'm hoping this one will have some better answers to my dilemma. What dilemma? Does it matter? That I want answers is universal to any problem, right? I don't feel like talking about it, tonight. Grab a pen and some paper and ask your kids to give you some nouns and verbs and adjectives - make it a game, a MadLib. Fill in the blanks with any old words or problems you want, because the specifics don't matter that much for right now. What matters is whether or not my talking about it has any value. Like a piece of candy rejected because it doesn't taste good enough to justify the calories, I'm not sure there is enough help to be found in talking that it would off set the involvement with the net that talking entails.

Monday, April 27, 2009

My passion flower bloomed!!! I thought the last winter's frost had killed it off, but no - look at that weird-ass thing!

Ok - been gone because I've been sick and focusing my energies on flame wars. Nothing like a good flame war to re-focus your energies. Anyway. one of the people involved link to an old post here and reminded me hey- I have a blog. I should go say something.

Saturday, November 22, 2008

It's been a long time since I wrote here. I know, that happens a lot. I disappear for months at a time then come back, contrite but filled with stories of what I was doing or why I wasn't doing it. Maybe I have pictures.

Things are different, now. Something has shifted. Not in a tectonic plate way, more subtle. It isn't that I don't know what to say - I even know where to start - I don't know. I don't feel like the same person. I feel narcoleptic and when I'm awake, I feel more aware of things around me. Maybe that's why I keep falling asleep, but I've never been one for inaction. Anytime something happened in my life, I've countered it by doing something. Cleaning, designing, creating, making phone calls, being proactive. Not now. Right now, when I don't have to be awake, I'm asleep.

I'm sure it's a response to shock. Been in overdrive for months.

It started in June, when I almost died after the surgery. Then I adopt a sick cat who later turned out to be pregnant, and the battle over the kittens has been something of a strain on the old marriage. Shortly after, my son was denied SSI benefits and we have to fight the state, but first I had to convince a lawyer to take our case. In October I was betrayed by someone I thought was a friend and my sister's home burned to the ground in that Sylmar fire, with all her cats in it. The stock market crashed and took our savings with it . . .

. . . it's been a weird season.

More later. I'll probably add stuff I wrote about it later. Till then, feel free to peruse the wonderful new widgets to the left over there.

Friday, September 05, 2008

Like most everyone else, I watched with great interest the other night as Sarah Palin accepted the nomination for Vice President at the Republican convention. I wanted to like her - not enough to change parties and vote for her, but enough that I could say she represented my gender with integrity and intelligence. Unfortunately, beyond the aging beauty queen cuteness of her, there's not much to like.

She said "I told the Congress "thanks, but no thanks," for that Bridge to Nowhere." Not quite - she supported it fully until it became clear how unpopular it was and then changed her tune. She never gave back the money congress gave her to build it, either. Never mind that, though.

She crows about saving the taxpayers money by selling the Governor's private jet on eBay (at a profit, McCain tells us). She said "While I was at it, I got rid of a few things in the governor's office that I didn't believe our citizens should have to pay for. That luxury jet was over the top. I put it on eBay." Not quite true. She tried to sell it on eBay, but no one wanted it and they ended up selling it to a private bidder for six hundred thousand dollars less than it originally cost to buy it. Never mind that, too.

What gets me is her claim that those of us with special needs kids will have a friend in Washington if she is elected. Her sister, who also has a special needs child, tells us that having a child and a nephew with special needs makes Palin aware of how hard we all struggle and we need her in Washington, on our side.

One has to wonder how much Palin has had to struggle, as her child is an infant and she has a full time nanny. Can't have been much of a struggle so far. For the sake of her child, let's hope it stays that way, because services for special needs children in her state are hard to come by since Palin slashed funding for those services by 62% over the last three years. (Budgets: 2007, 2008, 2009).

Lying bitch. Oh, you lying, manipulative bitch. None of my friends, most of whom I met through our special needs children, would ever think to slash funding for the programs that are so critical to our families. Of course, none of us have nannies, either. We've all actually raised our kids and we have fought and clawed for every bit of help we have needed for our children. Without those programs, the quality of our children's lives would have been greatly diminished.

Palin won't know what I'm talking about. Her child is an infant and she has a nanny so her personal experience as a mother of a special needs child is pretty scant. I wonder if she asked her sister, whose son is special needs, what she thinks? What conversations went on at the Thanksgiving table every year after the budget came out and her sister found that there would be even fewer services for her child than the year before? Is dissention allowed? Would there have been any? Does her sister have lots of money and a nanny, too?

Sarah Palin will never need the services that she cut. She has enough money to buy her son all the help he'll never need. We're not all that lucky, but we the people don't really matter and haven't for a long time. Getting into the White House is no longer a matter of public service but of positioning ones self to enjoy the perks of power. It's been a very long time since anyone in the White House gave a tinker's damn about any of us out here.

My family needs those services, though. We don't have a lot of money, or a nanny. We live paycheck to paycheck in an expensive state and although we could live a lot higher on the hog in a different place, we stay in California because California is our son's safety net. California has a law that provides doctors, prescriptions, job training, living assistance, affordable housing, in-home support services . . . anything he will need to survive if something should ever happen to us. He is eligible for these services because he is autistic and epileptic, but he only gets this help as long as he lives in Ca. and because he has lived here for so long. We move out of state, and he has no safety net at all.

Our Governor (also one of the Compassionate Conservatives) has already cut special education funding by $480,000,000 this year. We've spent years terrified that one too many cuts will mean my son no longer is able to attend the special education school we believe saved his life. Too many families are hanging on by their fingernails to trust Sarah Palin who, despite her family being touched by the same special needs issues the rest of us are struggling with, has already shown an alarming lack of concern for these families - her own family, for that matter, by cutting special education funding in Alaska by more than sixty percent.

Any woman with children who votes for this woman ought to be strung up by their ovaries.

Tuesday, September 02, 2008

Sparrow at Redondo Beach, Ca.

Tuesday, August 12, 2008

Photo Of Whales

Taken at Sea World in July.

Wednesday, April 30, 2008

Hundreds, maybe thousands of roses, lilies and birds of paradise strewn up the beach to the base of the cliff. A path for a bride and groom at the beginning of something? Or blooms tossed after the spreading of someone's ashes, a last gift to the dead and the sea? Were they a signal to me of celebration or remembrance? Is the solemnity, evoked in me without explanation or satisfaction, appropriate as I watch the tide wash them away?

Thursday, April 24, 2008

Took the kids out to Malibu and hiked up to the top of Point Dume. Caught this ladybug there.

Saturday, April 19, 2008

So, my oldest daughter and I went to see "Up In Smoke" when it was screened at our local Arclight theater. I normally would never have watched the movie, me not being a stoner kind of gal, or even a stoner movie kind of gal. But Cheech and Chong were supposed to be there together for the first time in I don't know how long to do an after-show Q and A, and I like Cheech a lot and it seemed a one of a kind experience to have with one's oldest daughter, so I went.

I guess a lot of people are stoner kind of people, because they had to add a second show, the one we caught. Unfortunately, Cheech couldn't stay for that one and Chong couldn't stay much longer than that, but he did give us a little something at the beginning. I caught almost all of it before the theater nazis, who didn't mind the people next to me blazing up, told me to stop taping. I wouldn't mind one of my kids bringing home a Chong kind of person. And to be honest, the movie had some very funny bits. We sat there with our drinks, breathing in the smoke from the people next to us and laughed - and I wondered when it happened that I went from shrieking "just say no!" at her to this.

Monday, April 14, 2008


Our happy, bonding bunnies.

Our family has been given three free sets of tickets to Disneyland in the last two years, all recompense for various transgressions this squeaky wheel refused to let quietly pass. Someone got hurt or scared or was treated badly, that kind of thing. I mention this because I overheard the kids discussing a news story they heard about a family suing a water park after their little girl got hurt on a water slide.

The kids were suggesting that perhaps "pushing a jellybean size person down a fifty foot water drop" wasn't the smartest of moves and I agree. Contact Children's Protective Services. Then call a lawyer. Opportunistic? Hell yes - the parents were dumb, but so was the ride operator, where the buck is supposed to make its last stop before being shot down a fifty foot water slide.

It's like I tell my kids - I don't encourage anyone putting their hands in the water on Pirates of the Caribbean or standing up on California Screaming. However, if one of them does it and gets hurt, the very first thing I will do, after turning to my child and calling them a dumbass, will be to turn to the ride operator and tell them they'll be hearing from our lawyer.

Then again, my retirement plan depends heavily on hoping to be hit by a city fire truck.

Sunday, April 13, 2008

I've been busy with the jewelry thing. Found that flea markets are not my venue and am seriously thinking of making a catalog that I leave in doctor's offices who specialize in geriatrics, maybe assisted living centers for seniors. I like the arthritis friendly aspect and am wondering how to expand on that - allergy free, maybe? Hm.

My son was asked to the prom by the love of his life - a girl who, to this point, had only wanted to be friends with him. I'm happy for him, and scared. If this girl trifles with his heart, I'll have to break her little legs, which will make being friends with her mom impossible. Shame, because I liked her mom.

Want to know what I've been up to when I'm not doing the jewelry thing? I've become addicted to Plant Tycoon, a game that lets you grow and design plants in real time. I love sim games like this. Remember when Sim City first hit the shelves? I'd spend hours in front of the screen with that one. That's what I've been doing this weekend - cleaning and every now and then, checking on my plants to see who is doing what.

I'd tell you to try it out, but there'd be a bit of a malicious element to it. It feels like offering heroin to someone for the first time. I'll be your pusher and you can be my junkie.

Thursday, March 27, 2008

Roosters. At the lake. As promised. Stop bitching.

I think I am going to opt for surgery to cure my sleep apnea. I've had it since I was a baby, so it isn't weight related. Still, because I have sleep apnea, I could get the stomach surgery without waiting if I wanted it. I don't. I want to do the nasal kind - or whatever they do in the nose or throat that makes sleep apnea stop.