Pain

I am a pain patient. That means I’m in pain most of the time and that I’m on pain meds. This is from a ruptured disk that left me with nerve damage. I have good days and bad. Then I have a bad knee that goes out when it wants to. Of course it’s the leg with the least nerve damage, so it sort of evens things out. The knee is one of the minor things though, in that it goes out, and I’ll be staggering around for a week or so and then it will behave until the next time. I am lucky that those are not frequent since it was operated on.

Then there’s the necrotizing fasciitis. That was a couple of years ago but I’ve had pain from the scar tissue ever since, and now I think there might be a hernia in there too, just to add to the fun. I see a Doc about that next week to finally get that taken out. It’s a major operation and I don’t know how long recovery will be. I’ll find out when I see him. After the NF, I was very leery to be operated on again but the scar tissue thing is ridiculous. I was on a wound vac for two months and had bi-weekly debridements, so there is a LOT of scar tissue. My stomach aches pretty much all the time, and when I’ve been more active than usual it swells up so much that it gets itchy from the skin being pulled tight. Hell, sometimes it does that for no particular reason that I can discern.
My C spine also has damage, and right now it feels like a herniated disc, again. I can barely move my head.  My neck is getting worse the older I get and I fear it might need surgery too eventually. For now I’m just hoping that not moving it for a few days will help. So yeah, I’m in rough shape right now.

I don’t talk about these things often. I doubt if anyone wants to hear them, and you can’t really know what it’s like for another person. Everyone is different. I’ve had several Doctors tell me that I have a very high pain tolerance, and Doctors are notorious for lacking empathy with pain in their patients. This is not to say that I’m full of grace when in severe pain, I’m not. I may or may not have been known to scream bloody murder to help alleviate pain. But if I mention being in pain, I sometimes get the impression that whoever I mention it to thinks I’m just bitching. So I don’t mention it unless I’m not thinking about it, and then if I don’t mention it I think they assume I’m not in pain. I know I’m not the only person who has this experience with others. Mostly I don’t worry about what others may think but once in a while it does hurt my feelings or anger me. Mostly I keep it to myself.

So, I’m on pain meds and really don’t like taking them. When they first put me on them, they tried various things. Some of them worked, but made me feel slow and stoned, which I absolutely hated. We  settled on a long acting pain med that did wonders. A few months ago we cut it in half. I volunteered to, for several reasons. One being the crackdown currently being played out over the “opioid epidemic”. As a result of this, they’ve come up with this handy little scale saying how much pain meds you can have. Because you know, they know better than the Doctors. Politicians being politicians and meddling with things they know absolutely nothing about is never good. So of course they didn’t account for long term pain patients or even cancer patients. Nice, huh? So according to their scale I’m still over, but if this scale hits my insurance it will be a little easier to come off it at a lower dose. The second reason is just not liking them. I don’t feel effects from them other than pain relief, but they’re strong meds so they have to be doing something, right? I have a ridiculously good memory but sometimes I can’t remember a word I’m thinking of. Stupid stuff like that drives me nuts and I think it’s the meds. And there’s the thing with writing. Because I don’t feel side effects it didn’t occur to me that the meds might be stifling my creativity. And I still don’t know for sure if it does, but I’m writing again after ten years.  It may be coincidence. I’m just grateful.
I have been writing every day, even if it’s just a little bit. It’s going slow, and part of it is that I keep going off on research tangents. But I’m immersed in it and that makes me happy. Between that and my art shop, they keep me busy, but I need to spend more time away from the computer. I want to keep the momentum going. I want to write a book, and then another book, and another. So naturally I wonder what I might be able to accomplish if I went off the meds completely. Unfortunately, I don’t think I’d be able to think past the pain. So I’ll take what I can for now. I fear that for recovery from surgery I’ll be on a higher dose again. I’ll keep trying to write, but I have this fear that I’ll lose momentum with the pain from surgery and the pain meds.
That’s it for now I think.

 

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Siblings

Excuse my mini rant yesterday. I was hurting quite a bit and it was the end of a long, terrible day. I’m still hurting but it’s the beginning of a new one and I’m going to try to keep it together a bit better.

My brother has been on my mind a lot lately. He’s been great, He tried to call me yesterday, the only person who did, but I missed his call. We texted and he’s going to call today. When we were kids I always knew it was my responsibility to take care of him. Mom left when I was eight and I had to start taking care of him. He was two. For a while we were supposed to switch off between mom and dad but that didn’t last.  Our father was an abusive asshole so it’s always been the two of us, and I was the older sister. There are probably more incidents than I’ll ever remember. We visited an aunt years ago and she reminded me of one I had forgotten. Our mother had gotten a trailer in the same park as our aunt, probably four or five streets away. I have no idea where our mother was but I was watching my brother. I was nine and baby brother was three. He was hungry and there was absolutely nothing to eat there. This may have been right after she got the place, I really don’t remember. I remember he kept telling me he was hungry. I was trying to distract him but he kept coming back to “hungry”. I don’t know how long this went on for but I remember the helplessness and anger I felt.
I was nine and not stupid, and I overheard my father’s family talking crap about my mother. And I did not like it. At all. Our aunt was my father’s sister. However, my baby brother was hungry and I had no food. Finally, I bundled him up in my pink sweater because it was cold outside. Again, I have no idea where his coat was. So, I bundled him up in my pink sweater, took his hand, and walked him over to our aunt’s house. I knocked on the door and she answered.  I asked her for a peanut butter and jelly sandwich for my brother but would not come in the house. When my aunt was recalling this she said she tried to get me to come in and get something to eat but I refused. I told her it was because I was embarrassed. Recalling this, I remember the shame and anger that filled me on having to ask her for a sandwich for my brother. I may have been nine but I knew they would see this as proof of our mom being a bad mother, which I did NOT want to hear. It pissed me off, to put it plainly. I remember the anger I had when our mother finally returned to the trailer and I told her what I had done.

Our dad was the abusive asshole that I feared all my life. Our mother was never anything but loving and understanding with us. She certainly did not get upset with me for taking him to our aunt’s house, although looking back I’m sure she knew that would give the family more ammunition to use against her. It never occurred to nine year old me that it might get her in trouble. I was just trying to get my brother fed. He was always my responsibility.
Our mother died two weeks before I turned eleven, and my brother was four.  He doesn’t remember her or much of what we went through, but I think he has to still have it in his subconscious. Sometimes I think he remembers more than he lets on. He hears snippets of what it was like for us but I don’t think he remembers screaming while I was being beaten. I don’t think he remembers our father’s systematic destruction of our sense of self worth and confidence.
Our father remarried when I was 13-14 and my brother was seven. I have photos of his seventh birthday. I was thirteen and had recruited a friend to help me throw a birthday party for him, if you can imagine two thirteen year old girls trying to handle a house full of seven year olds. Our stepmother is in the photo, and if I remember correctly, she brought me the decorations. After they married our father chilled out some and the abuse lessened. It didn’t stop, but I was grateful for the better atmosphere and also because she started taking care of my brother.  For the first time, I didn’t have to be solely responsible for him. I moved out when I was seventeen, but felt badly about leaving my brother. I told him to call me if he needed me, and that when he got old enough he could come stay with me.

There is so much more, but this is it for now. The sandwich incident was on my mind for some reason. They tell you to write what you know. I think about writing a book about our experiences, but to what point? It doesn’t really have a happy ending. It’s not inspirational. Who wants to read that sort of thing? So I don’t. I could work my experiences into a fictional character, but then I have a hard time thinking of what sort of story to tell. I think if I were to just write maybe something will come, so that’s what I’m trying to do. So, if I have the occasional post ranting about some painful incident, like yesterday, maybe it’s worth it to push through. I kept trying to write over the past year but would cry every time. So I would put it away so I could get myself under control again. But I was doing it for him, so he wouldn’t hear me crying. I think it’s time I started doing things for myself again.

depression

I’m really struggling with depression lately, which is why I haven’t updated. I’m trying very hard to not let myself sink to the bottom, but it’s hard to try to swim while fighting it when you’re on your own. I miss my mom, I miss Wendy, I miss Tara. I miss lots of things. I try so hard to give myself goals and to work on achieving them, and I was making some headway. But now I’m sunk again, and it’s pretty bad. I struggle with the urge to self harm, but I am not at that point. It is discouraging that the urge is back though. I haven’t done that in a lot of years.
I guess this is a bit of a release valve. Nothing literary, or even well written for that matter, but it helps with the pressure.
just a bit.

Alone

From childhood’s hour I have not been
As others were; I have not seen
As others saw; I could not bring
My passions from a common spring.
From the same source I have not taken
My sorrow; I could not awaken
My heart to joy at the same tone;
And all I loved, I loved alone.
Then- in my childhood, in the dawn
Of a most stormy life- was drawn
From every depth of good and ill
The mystery which binds me still:
From the torrent, or the fountain,
From the red cliff of the mountain,
From the sun that round me rolled
In its autumn tint of gold,
From the lightning in the sky
As it passed me flying by,
From the thunder and the storm,
And the cloud that took the form
(When the rest of Heaven was blue)
Of a demon in my view.

~Edgar Allan Poe

 

 

family

The last few weeks I’ve been recovering from surgery. It was my knee, or right below it, I suppose, so the problem has been with getting around. I’m healing well and am ahead of schedule with that. However, I get to feeling better and tell myself I’m still healing, but then I go and do something excessive anyway and re-injure myself. I’ve always struggled with this. I feel guilty if I’m not up doing things and I get irritated at my body’s limitations. Even while I sit here, I’m having sharp pains run up into my hip that I’ve been studiously trying to ignore, but they seem to be getting worse.

I have too much time to think. I think I’m the most isolated person I know. No family and no friends.. I thought my husband would be both to me.  My mother died when I was young and my father was abusive. I took care of my brother, and apparently no one noticed the horror we were living. To be fair, I never told. I had no reason to trust anyone. All that’s in the past, but I see now that I’ve been trying to make a family all my life. There have only been a handful of people I’ve become close to, so when I let someone know me like that, they become my family. That would be ok with me except that people who are not blood related can leave any time. Meanwhile, the few blood relations I do have don’t know me. Tara knew me best, and she is my family, but we haven’t spoken in years, so that’s not much good. I can’t talk to her, or anyone, about the things I’m interested in or what’s on my mind. I see things all the time, even now, and think “Oh, Tara would like that…” but I can’t get it for her or tell her about it. I’ve always been a giving person.. too much so at times.

Enough.. I’m hurting and tired. I’m going to go watch a horror flick and cuddle my cats.

Familiar dark places

I’ve been here before, many times. I was foolish to think I had left this place for good, and now I am without any support whatsoever. I am more isolated than I’ve ever been even in a lifetime of loneliness and it adds to my vulnerability.

The Eliot poem ‘Prufrock’ has been caught in my head, or parts of it at least. The part that says

I should have been a pair of ragged claws

scuttling across the floors of silent seas

feels like me. That and the ending with the mermaids. Hell, I think I posted it not long ago.

So here I am, isolated, without my independence but with someone who does not wish for me to be here after it’s been given to him. I cannot turn to the solace of the woods that I have found since I was a small child because there is only swamp. I’m scattered, shaky and trying not to look too deeply into that pit yawning at my feet. I’ve fallen in there before and it’s hard to escape.

Discipline in my writing has always been a problem for me.  I’m going to try, once again, to get in the habit of writing regularly. I’ve been out of it for so long that trying to write more than diary posts feels like clawing my way through. However, even diary posts are more than what I’ve been doing.

Do you think a gift goes away without use? Is it an infinite well that only needs to be tapped, or does it dry up? Sometimes I’ll have a thought, an idea, or just a phrase come to me and think that I need to remember it, but if I don’t write it down, I forget. How many good ones have I forgotten? I’m not old but I’m certainly not getting younger. I should have been where I wanted to be by now, if only I’d had discipline. Still, better late than never. I think I have  a fear of success, but I’m not sure why. The first time I sent my writing out, it all got accepted. Then I didn’t submit anything again for years. Next I started working on building a reputation. Again, all my writing was accepted, but I kept going with it for as long as I could, getting accepted at more prestigious publications. Two chapbook collections released, and I had a fan base. This went on for a few years I guess… and the last poem, and probably my best, got an honorable mention in The Year’s Best Science Fiction and Horror. That’s a very well known anthology, with a lot of sales every year. And then – nothing.

I became disabled, and I was fighting to keep my house. I took on more and more stuff to make money on the side.. selling vintage items, photography, seeds and plants. It kept me busy. More than that, I think I lost hope a bit… because poetry just doesn’t pay well, and I was fighting so hard to survive that I didn’t have it in me to write. When I got married, I had planned to go back to my writing, with the hopes of finishing a book. Unfortunately, I couldn’t seem to write anything. It was all crap.  At first I stuck to it, but day after day of crap discouraged me and I quit trying. Instead I concentrated more on my photography.

So this is me, giving it another try. I just started with a new therapist and one thing I have to do is have something to talk about every week. I can use this for that… and to help me get back into the habit. I need to succeed at something. I know that all my publications were successes, but I guess that’s not the same as a book. Something I could make appreciable money from. Money shouldn’t matter but it does. I don’t need to be Stephen King. I don’t think anyone else could possibly be that successful, except possibly his son. But to one day see a book I wrote on store shelves would be a huge achievement. I just wish I had someone who would share in my achievement and be proud of me. That should be Brian but I don’t know that he would, or if he was, that he would bother letting me know. And I kind of need to know. I need that encouragement to keep going. I miss the friends I had. Wendy… long dead. Tara… who may as well be. I keep hoping she’ll return but that hope fades every year. She is family, no matter how pissed off we might be with each other. I don’t know if she feels that way… I doubt it, but it’s true. I can hate what she’s done but not hate her.