Tuesday, September 24, 2013

Money ... it haunts me

I'm employed.

It may be temporary, but I feel excited just to say that for the first time in over four years, I have a job. I'll be working at a haunted house on weekends from now until November 2. I'm a little nervous about it because I will have people counting on me, and I still have issues with crowds and claustrophobia, both of which I will have to deal with nightly. However, I'm not going to be alone. Isa and Tory, two close friends, are going to be there with me. It's not much money, but it's money that I will actually be earning for myself, and that's a big step forward.

Money is still a source of extreme stress for me. I have a lot of shame centering around it that I haven't been too successful in dealing with. It's a strange mix of feeling like I don't deserve things because I don't work, and a terror of getting back out in the workforce. It's a paradox between wanting to have some money for my own, and losing the comfort of having Matt provide me with the things I need. Right now, he can't give me everything I need or want on his own, because of continuing issues with medical bills. We're talking to financial counselors, and things may get better in the next few months. But I was triggered badly when, during couples therapy, Matt told me that I have to learn to live on $100 a month or make my own money.

I have no confidence. There are lots of things I am capable of doing, like making art or jewelry to sell online. I just feel like nobody will want to buy what I make. I look at people who sell things on eBay and on Etsy, and compare it to my own work, and it feels like everyone has either already done the things I can do, thus saturating the market, or that they've done it better than I can. This has been an issue for me for a long time, in terms of blocking my creativity. Why write about things when they've been written about before? Why draw things when they've been drawn before? Why make jewellery when so many people make similar things? I feel like if I can't be truly original, it's a waste of time. Yet, given what actually sells on the Internet, originality doesn't seem to be a concern for others.

I defeat myself before I ever start, and yet I have a deep need to create. And I would love to be able to make money creating things that other people would enjoy. I don't know how to get past this mentally. It may be a case of just doing it anyway. As soon as I have some kind of success, it might give me the confidence I need to continue to produce. At least, that's what I'm hoping, because once the haunt is over, I won't have much choice.

Over the last few days I've been trying to take small, pro-active steps to save money. For instance, I downloaded an app to my phone that automatically loads coupons to my Kroger card, so that when I buy the items and scan the barcode, the discount is taken automatically. I've also chosen not to go out as much. My only real regular expenses are cigarettes and coffee. When I go to a coffee house, I tend to stay for many hours, buying many drinks. If I reduce this to once per week instead of two or three times, that will save me money, because I won't be buying coffee, and I smoke less when I'm at home than when I'm out. I have also chosen not to take my phone outside with me when I smoke, since it's easier for me to chain-smoke if I'm also messing around on the Internet. I think these small steps are a good start, but I need to do more.

I hate being an adult. I hate money. I hate the entire concept of it. I've never wanted to play the game. I'm also afraid that if I start to make too much money, it's just going to get taken away via garnishments because of my defaulted student loans. I made my bed ten years ago, and now I'm being forced to sleep in it, and it sucks, and I feel like a failure, and that just cycles back to preventing me from taking any steps forward.

I'm also plagued with the idea that I have to do everything right now. That I have to change everything I do immediately, overnight, and that if I don't, I'm a failure (again) and it's pointless to even start. Maybe this goes back to the way I was in school. Did you know I'm a genius? That's what IQ tests say. The lowest I've ever scored is 133, the highest was 165. So a lot of things come very easily to me. I'm used to things being easy. When I encounter something that isn't easy, where I make mistakes and learn just like everyone else, I feel like I want to give up. It was like that with maths and reading music in school, and I guess money is my Achille's heel as an adult.

So how do I get past all this? How do I trick myself into thinking I'm capable of this stuff that seems to be so hard for me? I'm still not entirely sure. I'm working on it. I'm hoping that this job will be my foot in the door, the confidence I need to start thinking of myself as someone who is capable of generating an income instead of a useless, lazy person. I am terrified that I will give up. That I will find it too hard because of the pain or the anxiety to continue working at the haunt until the end. And if I do quit, that will start the whole cascade of self-hate all over again.

I'm thinking maybe something I need is a form of self-affirmation that I do daily, just like my physical therapy exercises. It can't be contrived and stupid like the shit they taught us in middle school. I can't just tell myself "I am lovable and capable" all the time and be on my way. I feel like I need to look at my past and appreciate the things I have accomplished already, despite numerous barriers, and draw upon that for strength for the present. I'm going to ask my therapist tonight how I can go about this.

Anyway, for now, I'm employed, I'm cautiously optimistic, and I'm looking forward to making money scaring the shit out of people. Life is generally good. I need to make sure I remember that.

Tuesday, September 17, 2013

Loving myself

Lately, I love to look in the mirror. Getting my new haircut has given me a boost of confidence in my looks. I've been taking more care to do my makeup before I go out, and choosing my outfits carefully. I try to dress each day as if I'm going to meet someone important. The reason I've been doing this is because looking good and truly liking the way I look counteracts how my body feels.

Because if I presented myself to the world visually the way I actually feel, I'd be barefoot and in my pajamas. My hair would be unwashed and messy. I'd have no makeup on and the most prominent features on my face would be my mustache and my tired frown.

Creating a look for myself, an identity, is important. When I'm feeling terrible, I need to look in the mirror and see that I don't look terrible, that when others see me, they don't see my pain, physical and otherwise. It's a way to "fake it 'til I make it." And so far, it's working.

In two days, I finally have my evaluation for physical therapy. I'm looking forward to it as one might look forward to an audition. My assets and weaknesses will be taken into consideration, so that my training will yield the maximum benefit. I'm nervous, but I'm also confident that this is going to be a huge step forward for me, literally and figuratively. After so many years of being in pain all by myself, suffering in silence, I am finally doing something about it. I am finally able to take action.

Physical therapy is going to be a spiritual practise for me as well. It's going to force me to face my weaknesses. It's going to make me push past my fears. It's going to require me to put my trust in my therapists, and in myself, to affect change. There are going to be days I don't want to go. There are going to be days when the pain of training is going to seem like it isn't worth it, but I have to remember my strength. It's there. I just need to tap into it and make it work for me.

This all comes back to the idea of loving myself. I have often seen myself as defective, for all sorts of reasons. Growing up, I was never "normal" in terms of the way I interacted, the way I learned, the way my body worked, or the way I looked at the world. From the ancient nun who admonished me for being left-handed in gradeschool to my failures at relationships in high school, I have always felt there must be something terribly wrong with me. Something someone wasn't telling me, something that made me different.

Now, I am an adult. I have broken through many of my barriers, I have stability in my life, and I have support and love from friends and family. I don't feel like there's something "wrong" with me any more, but I do feel like I'm still working to define and accept who and what I am, and to love myself unconditionally. I can't say to the face in the mirror, "I only love you when you are having good days." Though I have had "friends" and relationships with people who treated me this way, I can't afford to have that kind of influence in my life any more, especially not from within. Though it is vastly important to have emotional support from those closest to me, I must empower myself in order to reach my full potential. I feel that I am emerging from my chrysalis at last. If you've ever watched a butterfly do this, you can tell how hard it is, breaking through that last barrier. Stretching those new wings. Taking those first quaking steps before catching the wind.


I am beautiful.
I am strong.
I have faced and conquered many challenges, and continue to do so.
I am not defective.
I am me.
I love who I am, and look forward to becoming more than I ever thought I could be.

Friday, September 13, 2013

Various things

Had my EMG. It was actually rather enjoyable. The mild electrical shocks relaxed my muscles. Even the needles didn't hurt very much, though they were embedded in my muscle tissue. The good news is that the results of the test were completely normal. That means that there is no actual nerve damage, at least, not in my legs. I'm going to have another test done for the nerves in my arms and hands.

What this means is that surgery is not an immediate necessity. Because there is no permanent damage to the nerves, it is more likely that physical therapy and other less-invasive treatments may help alleviate the pain. So, my decision to go forward with physical therapy has been reinforced.

I feel pretty good right now. Nice to have a test show me something positive for once. On the other hand, if they had found nerve damage, that would be a definitive diagnosis for the source of the pain. Medical tests are always mixed blessings this way.

In other news, I've reconciled with the friend that I'd had a falling-out with. Unfortunately, Isa is again dealing with the crisis of unemployment. This is the third job she's lost this year. It's becoming increasingly difficult to console her. Today, when I met her for coffee, she was so wound up I was worried she was going to have a collapse. I did calm her down eventually, but I am worried for her. Still, much as I'd like to, I can't fix her problems. I suggested that it might be time to consider a new career path. (I suggested that the last time, too.) We'll see what happens. I just let her know that I am here for her and I will support whatever decision she makes, and that no matter what, I consider her family.

Matt and I are still having money issues. There was another significant overdraft notice in the mail yesterday. We are seeing a couple of financial counselors, but I have to admit that I was floored that this happened again for the second month in a row. We were meant to have a date night tonight. I sat him down and said, "No. We have to make up for it somehow first." So we decided, together, to sell some of our electronics to pay for groceries this week, and use some of the money for dinner tonight. It was a difficult decision, but it was entirely necessary. I'm even selling a few of my collectible items on eBay so I can have a little bit of spending money. But this is a temporary solution, just a bandaid on the immediate problem. I'm hoping that by next month, the financial counseling will start to pay off, and the consolidation of our credit card payments will leave a bit more breathing room. We still need to make some serious lifestyle changes to make ends meet.

One of those things might be for Matt to find a higher-paying job, but I can't help but feel shame for not being employed. I keep telling myself that I am going to find a job somehow, that I am going to do all this stuff when my treatments start to ease the pain, but I'm terrified. I haven't worked in four years now, my employment history is terrible, and I am very limited in the types of jobs I can do because of my disability and the fact that I don't drive.

I'm trying not to feel this shame, and just do what I can, when I can, to help Matt out, but I'm a little selfish. I don't want to give up what little freedom I have, which consists of going to the coffee shop two or three times per week to write. I can cut down by buying less-expensive drinks, of course, but then there's my smoking issue. Ever since I've been on painkillers, I've been smoking a lot more. I have a lot of hard things ahead of me, and I'm overwhelmed. I don't feel like I can do PT, quit smoking, lose weight, and look for work all at the same time, and I feel like I need to do all of those things, right now.

Anyway, yeah, that's what's going on at the moment. I'm write more later, when more things come to me.

Thursday, September 12, 2013

Can't you just rip it out and give me a new one?

I think I always knew I'd be in pain for the rest of my life. It's been a fact of my life for as long as I can remember, so why should it not continue to be a factor? But again, actually hearing a doctor tell me that I have a "50-year-old back" and that regardless of what they do to fix the problem, it isn't going to eliminate the pain, somehow made it more real. Yep. All the suspicions I had about my spine were right. Even if they did perform a laminectomy and fuse my L4-L5 vertebrae, chances are, disease would progress to my other lumbar disks, which are already showing signs of wear.

I decided to go ahead with physical therapy. I have my evaluation in a week. I hesitated at first, because I did not want to go through all the work in PT, then have to go back to square one if I ended up having surgery. But since it seems like surgery isn't necessarily the most effective option and because I'm fucking terrified of surgery I have decided, for now, to go with a more conservative approach. This will include regular PT, hydrotherapy, possibly electrotherapy (especially for my neck), continued pain management with gabapentin and percocet.

There is a possibility of undergoing a nerve-block procedure. The nerve block is another injection, but this is numbing medication similar to novocaine which will be targeted at the nerve root. If numbing the nerve root lessens the pain, the next step might be cauterizing the nerve root to "kill" it. I may need this done several times a year. After my first experience with injections, I am of course sceptical and nervous about any similar procedures, but if physical therapy fails to help, I might consider it.

Surgery is, by no means, off the table. I'm just trying to balance my terror of going under the knife with my desire to get it overwith if it needs to be done, and not draw things out. Honestly, I am still disappointed that the procedure I hoped to have is unavailable for the lumbar spine. Taking out the broken part and putting in a new, shiny replacement is just so much more appealing to me than poking and prodding my collapsed disc and arthritic vertebrae trying to get them to work. I mean, it's like when you've got a car, and it's not that old, but stuff keeps going wrong with it and you discover one day that it'd be cheaper and easier to get a new one rather than to pour money and effort into fixing it over and over again. Unfortunately, I am told, the human body doesn't work like that, and even if they fixed all the damage, there's no guarantee it would stop the pain. It's kind of like wrapping duct tape around a frayed cord, which fixes the weak point, but ends up causing another weak point right below where you put the tape.
I have a lot of choices to make, and I'm kind of overwhelmed. I'm grateful that I have so much support from people who love me. I'm just .... tired. One day, I promise you, I will become a cyborg.



Tuesday, September 10, 2013

"Family" is not a dirty word... anymore

We've all heard the jokes about mother-in-laws being nightmarish creatures to be interacted with only when the consequences of not doing so outweigh the danger. Wives' mothers don't ever think their daughter's husband is good enough, and husbands' mothers never stop blaming their sons' wives for usurping their power.

Well, I'm not afraid of my mother-in-law any more. Not after yesterday. In fact, I'm pretty overwhelmed at how much we shared with each other, and how much wailing and gnashing-of-teeth and passive-aggressive sniping did not happen. It isn't that I ever had reason to believe Matt's mom was a monster. It's just that I have had precious little positive experience with family of any kind, at any time in my life. Even the word "family" has, in the past, been enough to trigger feelings of dread. And not just the "normal" dread people talk about when dealing with lots of family interaction at holidays and whatnot. I'm talking about any interaction at all.

Yesterday afternoon, I met my mother-in-law for coffee. I had initiated this little get-together, which is an accomplishment in itself for me, due to my abject terror of mother figures in general. I wanted to talk to her about her experience with spinal fusion surgery, since it's something I may have to deal with very soon. I reached out because I needed reassurance that all of my anxious, paranoid fears were indeed simply anxious, paranoid fears. (For contrast, my own mother, upon being told that I was considering surgery, promptly sent me links to scary articles warning of the dangers of anaesthesia and antidepressants.)

We talked, and she gave me the reassurance I was looking for. And then, the conversation took an unexpected turn. I told her about my panic attack of the evening before, and she asked me, point-blank, if anything at the memorial service may have triggered me. I had told her before that I am not Christian, and she hadn't run screaming, but I was still apprehensive about talking about my views (discussed in the previous entry in this journal.)

"I... really don't want to argue about religion," I told her, fidgeting in my seat.
"I won't argue, I promise," she said. "I just want to know."

So I told her about why the service had made me uncomfortable. To my surprise, she empathised with me. She actually seemed to agree, at least somewhat, in particular with my irritation at the assumption that all of the fallen had been Christian. She went on to imply that their church had changed a bit since the pastor I was familiar with and had liked had gone into mandatory retirement. (Apparently it's just a thing Episcopalian priests have to do.) The previous pastor, a woman, had made me feel quite at ease when I had visited the church previously. The energy of the place was definitely different without her leading the service. The new priest kind of gave me a bad vibe.

We went on to talk about other subjects that I didn't think I would ever dare talk about with my mother-in-law. (I'm not going to go into them here, as they're rather private, and this journal is public, but the subject of boobs came up.) By the end of the evening, I felt like I'd actually made a friend.

Wait... a ... what? A friend? Who is also my mother-in-law? I ... don't know how to process this. Family is family and friends are friends. There's my chosen Family, people who are not related to me in blood that I love as if they were, but that's different. I've almost never been friends with people I call "mandatory family." Blood relations, relations-by-marriage, that sort of thing. My mind is now desperately trying to categorise this new type of relationship. An "adult," who is the mother of my husband, who likes me as a person and wants to spend time with me. And there's no weird ulterior motive, no secretive back-biting bullshit, none of the stuff I'd come to see as "normal" in my own family.

The closest I've ever had to this kind of friendship was the mother of Brian, my first truly long-term relationship, and she died just as I was finally beginning to trust her. That was a long time ago, and I was a very young adult. Is my mother-in-law going to up and die now, too? I know that's ridiculous, but I can't help but think it. It's part of the feeling that this sort of relationship is so rare and fragile that it could disappear or implode at any moment.

Regardless, I'm incredibly grateful for my mother-in-law... and her son. I think maybe my life is finally starting to round itself out, with mature and non-dysfunctional (should I just say functional?) relationships with people of all ages in varying roles. It's just still a little hard for me to believe.

Where do we go from here?

Monday, September 9, 2013

Yes, I actually have an app on my phone in case of anxiety.

The worst panic attacks are the ones where I can't figure out what triggered them, even after I've had some time to calm down and think about it. My explanation for the one I had last night was that it might have been a reaction to something I ate. Maybe there was a load of sulfites in my food that I wasn't aware of. That's the easy explanation.

The not-so-easy explanation is that I may have been triggered by the day's activities. Matt and I met his parents at their church for a lengthy memorial service for first-responders (police and firefighters), timed, no doubt, for the anniversary of 9/11. Matt's parents are both in the church choir, and they asked us if we would join them for the service and then for dinner afterward.

Don't get me wrong. I like their church. It's pretty. The people there seem fairly open-minded, though I wouldn't just blurt out that I'm bisexual, Pagan and in an open marriage with Matt. They don't do the fire-and-brimstone schtick, and seem to keep to the theme of salvation, which is fine with me. But this service irked me for several reasons.

First of all, it was ridiculously drawn-out. The program was about a dozen full-size pages long, and somehow, four-line psalms ended up becoming ten minutes of off-key choral warbling (bless'em, but they're just not that great). The ancient wooden pews were very hard on my back, and even though I'd doubled up on my pain meds (by accident, mind you), I was in agony after the first hour. I had to ask Matt to go out to the car and get my travel pillow to sit on, which relieved the pain somewhat, but I was horrified to realise that the pillow still smelled of the meat Matt left in the trunk of the car (another story altogether) and I knew the lady behind me, a friend of Matt's parents, could smell it. Ugh.

Secondly, well, I'm not Christian. I don't have a problem with Jesus or his teachings (mostly), but I do have a problem with Christian churches. I was bothered by the fact that it was automatically assumed that all of those who died were Christian, or if they weren't Christian, that they would somehow end up in the Christian version of heaven. And of course, there was the reminder that Jesus said, "No one comes to the Father except through me," one of my least-favourite verses. It is so often used by Christians as "proof" that theirs is the "one true faith," invalidating any other spiritual path.

Anyone who had been baptized Christian was invited to take part in holy communion. I had taken communion at the church before, for the Christmas service, but this time, I declined. I decided that if they were only inviting certain people to their table, and not everyone, I would not partake. I am baptized Christian, technically, but I do not practice nor preach. Though I acknowledge and respect all forms of spirituality, I have chosen to give my loyalty to my gods, whom have redeemed me and given me strength.

Anyway. It was a two-hour service, and by the end of it, I was exhausted, physically and emotionally. We went back to Matt's parents' place, supposedly to have dinner, but they suggested going out. I would rather have stayed there, where I am comfortable, and there are adorable cats to pet, than go to the dinky little sports bar where they decided to take us. I was already feeling anxious. The warning signs were there, but I did my best to ignore them.

By the end of the meal, though, I could not ignore it any more. The chill began at the back of my head and spilled down into my core, pooling in my abdomen, making me feel sick. I said nothing. Matt was engaged in conversation with his parents. They did not notice I was in distress, and I did not want them to. I didn't feel I could move at that moment, so I began to take slow, deep breaths, and I reached for the Let Panic Go app on my phone. The app tells me stuff I need to hear.
It's like having someone tell me to just breathe, just relax, you aren't dying, you aren't going crazy, your heart isn't going to fail, you're not going to collapse. You're fine. So I just concentrate on the leaf. Make the leaf go up and down by touching the screen, in time with my breath. Finally, I was calm enough to excuse myself to the bathroom, where, of course, I had an IBS attack, and I continued to use my app.

Hooray for technology. To anyone looking at me while I sat at the table, it must have seemed I was just reading something on my phone. Matt didn't even have any idea. I guess hiding it like that is a survival instinct. I'm not sure if that's good or bad. On one hand, perhaps keeping my body calm and focused helps end the panic, but on the other hand, it prevents me from action, such as going to the bathroom and splashing cool water on my face, looking in the mirror to focus on the here and now.

Anyway, yeah. Sick of this shit. It took meditation plus two klonopin to bring myself down from this one. It wasn't as bad as the medication-induced "grand mal" panic episode I had a few weeks ago, but I felt like it could have gotten to that point had I not been able to go home, take a cool shower, and relax.

There is nothing I hate more than fear of nothing.

Saturday, September 7, 2013

Nightmares

I'm married to Matt, but I'm still a teenager. Or at least, I feel like one.

"Well, at least you're not a dyke," says my father. "I honestly thought you'd have a better life than this, but you're a fuckup. And you married a fat fuck. At least he's enough of a man to take care of you."

He goes on to chastise me for being fat, and for smoking, and for being a "junkie." I assume he's talking about the painkillers. These are all things that he, himself, is guilty of.

I scream at him. I tell him he has no right to say any of that, that he washed his hands of me as soon as he could get away from my mother, that he lied to me, abandoned me when I wasn't of any more use to him. I tell him he's an asshole and I'm glad I didn't turn out the way he wanted me to.

Flash forward, another dream. Matt and I are going on a trip somewhere together. I think it's to some kind of convention on the other side of the country. It should be fun, and I should be excited, but I feel horrible. I'm deeply anxious. And then, for some reason, we end up on different flights. I can see him in the other plane, but we can't talk. He's lying down. The other plane is full of beds instead of seats. And then we take off. I feel like throwing up through the whole flight. I'm crushed against the window by a man who smells like rotting flesh. We finally land. I wait for Matt at the terminal, but he never shows up. I ask about the flight, but no one has any idea what I'm talking about. It's as if the flight Matt was on never existed. I'm now alone, frightened, and without any means to call someone for help. My phone is dead and there isn't anywhere to charge it. I think it would almost be better if someone told me the plane crashed. At least then I would know. I fear I'm losing my mind and that Matt was never with me to begin with.

I wake in a cold sweat, nauseous, my head pounding in pain. Matt says he came in this morning to give me a kiss, but I only vaguely remember it. For several moments, I don't know where I am, and then the room finally rearranges itself to be recognizable as my own.

I sit up in bed, take my morning pills and wait for them to kick in. I'd been sick the night before with stomach issues, with a slight fever and a general feeling of weakness. I chalk up the nightmares to that, but I'm still shaking a little bit. I feel like I just want to stay home and rest, but after those dreams, I feel like I can't waste any precious time I have with Matt over the weekend. I manage to get dressed and go with Matt when he has his therapy session. He's in session now, and I'm writing this entry.

I'm better now, but the dreams suggest that I am still struggling with my self-worth, of a fear of disappointing others - my father, in particular- even though my father hasn't been a part of my life for many years. I am also terrified of abandonment, of losing what I have. My world revolves around Matt. I depend on him. He's my husband, so that's normal, mostly, but because I have disabilities, it's even scarier to think what would happen to me if anything happened to him.

Sometimes, I think that this all must be a dream. I will wake up back in my mother's house and I'll be 22 years old and none of this will have happened. And I'll be sad, but safe, in a strange way. Maybe it's just the feeling of needing familiarity, of needing to know that something isn't going to change. We're going to be moving again in just a couple of months, and we don't know where, and I'm really hoping that wherever we go this time will be somewhere we can stay for more than a year.

Again, Halloween, my favourite holiday, will be too busy with preparations for moving to be enjoyed fully. But that's what Samhain is, really. It's when the wheel of the year turns and you get rid of what you don't need anymore and you start anew. I think on last year, when we were burdened with a horrible landlord and the huge expense of treating all of our belongings for bedbugs. I think about how sick I was from all of the bedbug bites. I think that this year has got to be better than that, even if it is stressful. I just really don't want this to be a yearly occurrence.

I'm still afraid of change. Every time, it gets a little better. I know that. It doesn't mean it still doesn't terrify me. In addition to the move, there's the looming back surgery. I just feel overwhelmed. Maybe when I get overwhelmed like this, that's when my brain goes haywire and produces these terrifying dreams.

I just want not to be afraid anymore.

Wednesday, September 4, 2013

Finding the ghost in the machine

My consult with Dr. Chen and his colleagues today was both comforting and terrifying. We went over the stuff that I already knew: the L4-L5 disk is fucked. Chen's medical assistant advised me that spinal fusion is essentially my only option. I was disappointed to find out that total artificial disk replacement for the lumbar spine is not yet reliable enough to be a viable option. I did learn something, though. I did not know is that the disks themselves are ennervated. I thought they were simply masses of cartilagenous tissue and fluid. It is possible that the nerves in the disk itself are inflamed or damaged, and that may be the cause of my pain.

Before any kind of surgical intervention, it's necessary to gather as much data as possible about the origin of the pain. Pinpoint the problem as best they can so they can eliminate it. That's just logical. Only, despite the spiffy white lab coats and expensive degrees, when it comes down to it, no doctor is ever certain about how well a surgery like this will go. They could do everything right, and end up making the problem worse. No, it's not brain surgery. It's spine surgery, and it's no less complex, except that, with all those bones in the way, the surgeon has to be part mechanic. (Note: please do not click the previous link if you're squeamish.)

To my relief, neither the doctor nor the MA mentioned anything about having to lose lots of weight before the surgery, which is good, though they did caution against smoking, which will be a challenge. I think I can cut down. Just not at the moment.

In terms of further diagnostic tests, the medical assistant told me that she would recommend a discogram. It sounds like a new dance step, but it's considerably more painful. Basically, they'd stick needles full of flouroscopic dye into my disk space to try to reproduce the pain. If it hurts, it's considered a "positive" discography. The dye also illuminates any cracks or annular tears in the disks. It sounded horrible. And fascinating, since I'm weird like that.

When I actually met Dr. Chen, he said that he was "on the fence" about that procedure, as it is invasive and extremely painful. (Whew!) He recommended another test, the EMG (Electromyogram), a type of nerve conduction test. Only slightly less disconcerting than the disco nightmare, this test involves:

You will be asked to lie on a table or bed or sit in a reclining chair so your muscles are relaxed.

The skin over the areas to be tested is cleaned. A needle electrode that is attached by wires to a recording machine is inserted into a muscle. (Into a muscle!)

When the electrodes are in place, the electrical activity in that muscle is recorded while the muscle is at rest. Then the technologist or doctor asks you to tighten (contract) the muscle slowly and steadily. This electrical activity is recorded.

The electrode may be moved a number of times to record the activity in different areas of the muscle or in different muscles.

The electrical activity in the muscle is shown as wavy and spiky lines on a video monitor and may also be heard on a loudspeaker as machine gun-like popping sounds when you contract the muscle. The activity may also be recorded on video.

An EMG may take 30 to 60 minutes. When the test is done, the electrodes are removed and those areas of the skin where a needle was inserted are cleaned. You may be given pain medicine if any of the test areas are sore."

(Plus, you're not allowed to have any caffeine or cigarettes three hours prior to the procedure. Guess who's going to the coffee house with a pack of smokes right after I'm done?)

Anyhow, the EMG test is a done deal, scheduled for Friday, September 13th (make whatever inferences you like about the date). I'm less afraid of the electric needles in my muscles than I am about doctors trying to "reproduce my pain" by essentially digging around in my spine. I will decide later if I want to risk undergoing the discofuckme test. If they determine that they absolutely need more data to proceed with surgery or any other treatment, I may consider it. Don't get me wrong, I'm pretty kinky, but the idea of lying down and having someone stick a needle in my vertebrae, squirting it full of dye and asking, "Which hurts worse, when I do this or when I do that?" just doesn't appeal to me.

So, this is all information. I'm not really quite sure what to do with it yet. My emotional response has been, thus far, one of general apprehension, but also curiosity. I think I'll try to write about my actual feelings later. I will say again that I've accepted the risks. I know that, regardless of what I do or don't do, I will be in pain for the rest of my life. At least this way, I can say that I did everything I could to fix it. Worst case, I end up in a wheel chair, and really, given how many awesome people I know who have wheels, I'm actually not that bothered about it. Yet.

(I would totally have a tricked-out chair with Nerf rocket launchers.)

Tuesday, September 3, 2013

I'm a hot mess

I hate going to sleep. I never know whether I'm going to have amazingly cool dreams that make me feel as if I've got a mainline to the fount of all inspiration, or horrifying dreams that make me feel like death is the only way to stop the pain. I hate waking up. I never know whether I'm going to be able to get out of bed and face the day like a sane person, or if the pain inside and out is going to paralyse me and make me wish everything would stop, just stop.

I've tried all kinds of tricks. Meditation before sleep, positive self-talk, herbal remedies, setting alarms, not setting alarms, leaving the window open, keeping it closed, eating a small amount of protein before bed, not eating anything before bed... you get the idea. I just have a really unhealthy relationship with sleep, and it affects everything I do.

Speaking of unhealthy relationships... pills. Let's start with Percocet. I still haven't ever taken more than one at a time, or more than one every six hours, as prescribed, but damn if I'm not starting to worry if I'm getting addicted. There have been a couple of days when I haven't taken them, and it's messed me up, both pain-wise, and emotionally. So, great, that's another chemical dependency. Fan-fucking-tastic. I never wanted this. I just want to be able to do things like a normal person. Just ... not skip drying my hair or shaving my legs or putting on makeup because it hurts too much. Being able to take care of the cats. Being able to sit in one position for more than a few minutes without my legs and feet feeling like they're on fire. I mean, there's no question that I have a legitimate medical need for the painkillers, I just... look at this!!


This is my "candy stack." Each colour contains a different medication that I take every day. The clear container is Lexapro, 30mg per day for depression and anxiety. The yellow one is Neurontin, 300mg twice daily for mood stabilization and (supposedly) pain relief. Blue is Klonopin, for anxiety, as needed. I don't take those every day, usually. Orange is Percocet, 5mg/325mg (oxycodone to acetaminophen) up to three times daily for pain. Pink is a muscle relaxer I can't even remember the name of, up to three times per day, but it knocks me out, so I only take it at night. Last, but not least, is Bentyl, in the green container. That's for IBS.

Six medications, all with varying effects on my mood and physical being. Some even interact with each other, though, obviously, not severely enough for my doctors not to prescribe them. How the fuck did I get to this point? I really need to talk to my prescribing psychiatrist, but she hasn't called me back. I hate, hate, hate dealing with medical offices.

So I'm staring down the barrel of this surgery thing, and I'm having nightmares about it. Graphic, disgusting nightmares, about the wrong surgery being performed, about parts of me going missing, about my bones not growing back right, about horrifying infections and complications. Tomorrow is when I have my consult. I don't know whether to tell him how terrified I am of surgery or not. I'll be looking at a man who will potentially be slicing open my skin and fat and muscle and removing bits of my bones and maybe even putting a chunk of titanium in my spine. I get to decide whether I trust him, right? It's just, I dunno. It's like talking to someone who says they're going to rape you. To me, anyway. I have never had my body invaded this way. It's like some last frontier of invasiveness. But it's just surgery. Thousands of people have this stuff done to them every day, for varying reasons, and they live, and they get better. Why should it be any different for me? Why can't I get past this?

And now comes the body-shame. I will probably be forced to lose weight before I can have surgery. All over my Facebook page are posts by friends who are so proud that they've lost so much weight. Several of these people had previously espoused to being "size-positive" and loving themselves the way they were. So the message I'm getting is, actually, no, it's not okay to be overweight, for anyone, and if you love yourself this way, you're delusional. And if you're fat, it's your fault. It's like being fat is a moral failing.

You have to understand, I have worked really hard to love myself in this body. I don't always like what I see in the mirror, but most of the time, I do. I'm curvy and sexy and beautiful. Except when I'm fat and disgusting and ugly. You know what? I just wasn't built for this century, or this climate. Like most people who are fat, it's more nature than nurture. Okay, so I have a problem with froofroo coffee drinks. I can fix that. I stopped drinking soda years ago, and that was no big deal. I can cut carbs. Fine. I've done this all before. I've dropped maybe ten pounds or so. My weight has been about the same, plus or minus 15 lbs or so, for at least the last 10 years. So I'm not continually gaining weight. This is just the size my body thinks it's supposed to be. I don't know how to fix it without doing a lot of exercise, which I can't do, because of the fucking pain. Which brings us all the way back to square one.

I feel so accomplished when I can get out of bed all on my own, fight the anxiety, fight the agoraphobia, fight the pain, fight the depression, and get out of the house, like I did today. But if it wasn't for Matt and medical intervention, I fear to think where I would be. Probably a shuddering ball of suicidal ideation, hiding in my room, unkempt and unwashed for weeks. People don't realize, when they look at me, how close I am to that edge. How I teeter.

I'm just ... tired. I guess I'm done writing, for now.