Reblogging myself: Hurt and Transition

July 29, 2012 at 11:04 am (Uncategorized)

Because I have readers here that do no follow Sex, Gods, and Rock Stars, I have made an important life post there that will be of interest to those that care about me or are interested in my life.

Hurt and Transition

In short, I am getting a divorce. The details are in that post.

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A “Good” Test Result

July 26, 2012 at 10:11 pm (Chronic Pain, Living, Medical, Spiritual, The Journey Towards Diagnosis) (, , , , , , , , , , , , , , , , )

Today I finally got one of the tests that Neurologist number 5 prescribed back in November. (Things have been kinda hectic, medically, since then, so I put them on the back burner.) It was a EMG, specifically a surface EMG. This means they put conductors on my skin and ran increasingly strong shocks through my nerves to see how they reacted.

The test was quite painful. At the higher levels, it actually felt like my tics do, and some of the shocks caused noticeable tics for a few minutes afterward. This is a good thing, as I rarely seem to tic in front of a doctor during a visit, so at least a medical professional has now borne witness to the phenomenon. It may also end up helping me better explain what I mean by “tic” to doctors, too. But let me tell you, it hurt. I cried, and I’m no pain wuss. In fact, for several hours afterward I felt sore and my nerves were over-active.

Because this office is awesome, after the test was over the doctor came in and told me the results. (Usually, when you get a medical test, the tech can’t tell you anything about what’s happening or what they see, so you end up having to wait until your next appointment to find out what it all meant.) He was very concerned – I’m not entirely sure what it means, but he repeated that I had “low amplitude” several times. He first posited that this might be because I am obese, but I pointed out that my limbs are fairly slender and I carry most of my fat in my torso. He agreed with me, and became more concerned. He decided that since the results were markedly “low”, that there could be some “artifacting”, which I assume means that there was something wrong with the test or how it was administered.

To my dismay, his recommendation was to repeat the test at one of the Big Hospitals in our area. I’m starting to think that living in an area where I have access to two major cities, and thus their world-renown hospitals, may be a double-edged sword. I used to think it was a good thing, but with all the crap I’ve had to put up with from Johns Hopkins (including sending letters in the mail asking for an appointment and them going unanswered – after several attempts via phone and email), I am starting to dread the Big Hospital referral. The neurologist suggested other Big Hospitals (George Washington being the one I’m going with). I’m also unthrilled, obviously, that I have to undergo a pretty unpleasant test yet again; especially now that I know how bad it is.

There’s a second kind of EMG, where they test the nerves inside your muscles. This requires a needle-like probe; I’m not afraid of needles at all, but I had another neuro try this test with me and it was so painful I had them stop the test. This neurologist wanted to try that test, but seeing what shape I was in after the surface EMG, he decided I’d had enough “torture” for one day.

Part of me is kinda elated; finally, a test that proves that there is something neurologically wrong with me! After all the hoopla of getting various MRIs, and having to find stronger machines that can accommodate fatties like me, only to have doctors dismiss me because I couldn’t find an appropriate machine; this is actually progress. But part of me is scared: that list of disorders that abnormal EMGs can mean is pretty daunting. I did notice that Polymyositis was on the list, and that’s a diagnosis I’ve heard before from my pain management doctor. (It’s one of the ones that qualified me for the wheelchair.) It basically means “inflammation of the muscles”, which doesn’t explain half my symptoms, but it’s a word. And words are powerful.

Of course, since my neurologist is also a sleep specialist, he noticed I had not yet had my CPAP titration, and he is concerned that my apnea may not only be playing into some of my symptoms, but as he put it, “Neuropathy won’t kill you, but apnea will.” So he wouldn’t let me leave the office until I scheduled that. He did do me a solid – he wrote on all the paperwork “Patient may sleep on their side” – most sleep studies force you to lay on your back, but a) I don’t sleep on my back, ever, so it doesn’t accurately represent how I sleep at home, and b) sleeping on my back is uncomfortable and even painful from time to time. So I’m doing that next week.

A little news on another medical front: it turns out that even though I have most of August free, the OBGYN isn’t available for the D&C/ablation until September. In better news, however, he has decided that I can have both procedures at the same time, instead of two weeks apart. Scheduling-wise, this is a good thing, but I’m a little concerned that my manly-parts will need extra time to heal after such ‘abuse’. Right now, it’s scheduled for a week before a camping-in-cabins event where I have to be fairly active; we are actively trying to reschedule it for later, but my schedule really doesn’t have another big hole for recouperation until December. I have to decide if it’s more important to get it done sooner rather than later, or wait until I have copious enough time to heal at home. Like most things in my life, it will likely end up a compromise.

I’ve been having a fairly bad pain flare since I got home from Camp Out. For the first few days I was basically bed ridden and able to do little more than watch tv. My boyfriend came to visit and I was active while he was here (stop your dirty thinking…), and I also didn’t get the kind of sleep I’m used to (hey now…). I will tell you a secret: while he was here, I was smiling through a lot of pain. My desire to ‘live life’ was higher than my pain, so I tried as hard as I could to keep up.

I even went through with the plans to get a new tattoo – the funny part being that the pain in my legs hurt much worse that the ink – but I think I’m starting to pay for all my fakery. I feel like I might be coming down with a cold or the flu or something like that – a little sore throat, a little flu-like achyness (which doesn’t feel like my regular pain), my ear acting up – which is a typical Del-body response to pushing too hard. It probably didn’t help that I did a fair amount of spirit-work type stuff (channeling, etc) while he was here, and that always throws my body for a loop. I need to find a way to draw a boundary around how much of that happens while we’re together – he kinda relies on me for messages from his God, since his “god radio” is fuzzy at best, but at the same time I don’t want our relationship to become rooted in me doing spirit-work for him. There’s a post for SGRS coming up on this part of our relationship, mostly because I feel there’s a dirth of writing about being the partner of someone with a God-relationship.

I’m going to go into spoon-recovery mode for a few days, so if I’m not super responsive to email/FB/etc, you know why.

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Getting Back on Track

July 19, 2012 at 2:50 pm (Chronic Pain, Living With Chronic Illness, Medical) (, , , , )

This is for those who read just for the “what the heck is up with Del’s medical shite these days” posts.

For a while, I’ve been way off track. When Ninja had those seizures in January, I kinda used it as an excuse (albeit a good one) to focus on him and his needs, and with that came me putting my medical journey on pause. Then I had the menstrual issues and was dealing with that when the emergency surgery came out of left field. The surgery took a while to fully heal, and by then I was in the busy season for my job.

I just want to let you know that things are slowly getting back on track. I am getting those manly-part surgeries scheduled, likely for late August. I got all my test scripts from the neurologist re-issued and I start those next week. I did go to the dermatologist and get that taken care of. I am going to make a GP appointment to talk about some of the post surgery stuff I’m worried about (I’m pretty damn sure I still have marked edema on one side of my belly, and my abdomen is rigid in places close to but not directly next to where the surgery took place, which worries me a little.), as well as get advice as to which kind of doctor to see about the marked increase pain, and decreased mobility, in my legs.

I’ve decided to try to get back to the paleo-esque diet, although I’m hoping to create two little loopholes to make life more enjoyable. After Jon died, I kinda slipped off the wagon in a slippery slope that lead to me eating Nutter Butters and Mac and Cheese – absolutely not on the plan at all. I also got very stomach-sick when I did, which scares me a little for if I decide to chuck it altogether. But I keep reading that lots of people with chronic pain find solace in this no-grain business, so I’m giving it another go.

I’m also highly considering both a deep tissue masseuse (one that I got a taste from at DO: Fusion and really enjoyed) and a chiropractor. I’ve tried the latter before, but the guy I saw mostly cracked my back, set me up on a tens unit for half an hour, and then tried to sell me crap. Anyone got an awesome chiropractor in the Germantown/Gaithersburg/Rockville/Frederick areas? I’m willing to travel to someone who gets results.

There’s your purely medical update for now.

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You won’t like me when I’m angry.

July 18, 2012 at 10:00 am (Chronic Pain, Living, Living With Chronic Illness, Mental Health) (, , , , , , )

Being sick makes me angry.

I think it’s the emotion I feel the most often in direct relation to my illness. I get depressed, frustrated, upset, but most often, angry. Really, boneshakingly angry. I get so mad I turn red, and shake, and can’t engage in polite conversation. I have to listen to loud music and feel like a suburban teenager whose every pore is screaming for something, anything to happen.

Sometimes, that’s how I feel. That even if things were to get worse, much worse, at least then something would be happening. I would be that much closer to figuring out what the hell is going on. Every time I get hung up on some other thing – like emergency surgery – I get even more angry. When that happens, something is happening, but it’s like your parents getting a divorce. It’s something, but it totally sucks and doesn’t make life any better.

When I get angry, my muscles tense up. I become hyper aware of my body, and every little pain seems that much bigger. My blood pressure and blood sugar go up. I am not breathing deeply, and I get lightheaded. I get nauseous and can’t even sip water without feeling sick. I start to get really worked up, and maybe I even vomit. My chest starts to hurt. I can’t make simple decisions. I fall behind in my work because all I can mentally handle is staring at moving pictures. I don’t stick to my diet. I can’t express how I’m feeling to my loved ones, even though they can easily see I am not doing well.

In other words, I get sicker.

These things have long term consequences. When I stop being angry and find a little piece of peace, my muscles ache from being tense for so long, or worse they won’t untense and I find myself with limited mobility. The things I do to control pain don’t work as well, since I’m hypersensitive. Usually that ends up leading to me in one of those bouts when clothes hurt and I end up having to sleep on fuzzy blankets and can’t touch anyone. I get intense headaches that come and go for days. My jaw starts to pop from all the clenching. My blood sugar control goes out the window and I end up using insulin. I have a backlog of correspondence and other work that I now have to face in a short amount of time. My loved ones are cautious around me and feel like they can’t come to me with their shit because I’m so lost in my own. But at least I’m totally up to date on the Glee Project, right?

It becomes a cycle. I get angry because I’m sick, I get sick because I’m angry, and then I get angry that I’m sick because I was angry. I feel like I’m always just this far from treading water. I either have to artificially reboot – cancel something and create some free time so I can catch up on the stuff I fell behind on; or I end up turning to those around me and begging for assistance. Well, that’s not entirely true. Another outcome is that I just don’t get stuff done. I stop going to doctor’s appointments, I stop answering email, I stop checking Facebook/Fetlife, I stop answering my phone, I stop engaging in anything that might, y’know, make me feel human.

I know what the answer is. I’ve always known. But it’s sort of like menstruation – I’ve been doing it since I was 18 or so (late bloomer) and I’m 37 and I still don’t always recognize the signs that its on the way. Because when I get lost in the cycle, the first two things I jettison are the ones that always end up helping me in the end.

Sleep, and meditation.

I’m never sure how to address the sleep issue. Stress gives me terrible insomnia. It’s never a good sign if I’m only sleeping 4 or less hours a night, or if I’m sleeping in 2 hour shifts. Now, a part of that is also related to pain – obviously when my pain is bad, I don’t sleep as well (often I have to sleep in a particular position, and if I move even a little I wake up). Sometimes I end up taking Alteril – an OTC mixture of melatonin, valerian, and l-tryptophan. I don’t like it because the next day I’m in a fog and lack motivation to do much of anything, which is kinda not the point. I used to take Ambien, but it’s expensive and I got to a place where I couldn’t sleep without it.

Meditation is another ball game. I’m a giant hypocrite, in that when I get angry, I stop meditating because my brain won’t shut up. And yet I tell people all the time that it’s better to sit still and breathe for five minutes even if their brain won’t shut up the entire time because it helps them create a habit of it. But as someone who is supposedly good at this stuff, I have a short temper with myself when I have to go back to basics all over again. Although really, that’s meditation in a nutshell. There’s really no such thing as “an advanced meditator”. Because once you believe you are, you’re not. It’s a Schrodinger’s Cat thing. But meditation is totally within my control. Even just taking five minutes to slow and deepen my breathing would make a difference. I just need to give a damn first.

Sometimes I just need to get out of my environment and do something different for a while. That’s not as easy as it sounds, because I can’t just run away and pretend my life isn’t happening in my absence – I might as well stay home and watch Law and Order if that’s the case. I have to both get out of my routine, but not abandon it completely. So events don’t count, since I can’t spend hours answering email and writing there. (I always think I can, and then I totally fail, every single time.)

So what do you do? How do you break out of your cycle of anger-stress-pain-anger? What coping mechanisms work for you? How do you enforce meditation when you feel like everything is fruitless? I’m all ears.

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Doing The Best It Can To Support My Life

July 11, 2012 at 11:16 am (Chronic Pain, Disability, Hospitalizations, Living, Living With Chronic Illness, Medical, Mental Health)

“It’s not my body’s fault that I’m sick; it’s doing the best it can to support my life” -Toni Bernhard

It’s very hard not to get angry at my body. The symptom that is getting me down the most these days is that my legs are in pretty bad pain. It seems that the meds can only do so much, and even the addition of the lidoderm patches (basically, topical anesthetic) haven’t really made much of a difference. Part of this is because my leg muscles are constantly in motion – the muscles twitch and tic of their own volition, most of the time in very small, barely noticeable twinges but sometimes big enough to make standing/walking difficult.

I’m in this weird limbo where I have to wait for more diagnostics. The last six months have been a bit of a side-trek for me, what with the manly part problems (that still need to be addressed) and the emergency hernia surgery and all the bullshit that followed. I was supposed to be following up with the neurologist, getting nerve conduction tests (which I’ve had before, but each one wants their very own) and other tests; I just got all the test paperwork re-made so I can go focus on that for a while.

But what this is really about is those moments when I’m desperately trying to make my legs obey so I can go live life. I get very mad at my body when it hurts. I guess I have to get mad at someone, and I can’t get mad at me – I didn’t ask for this or necessarily do something to make this happen – and I can’t get mad at my doctors, since they can only do as much as I am willing to cooperate with. I can’t get mad at the people in my life, because well, that would be stupid. I sometimes direct my anger at other representatives of my frustration – I curse my calendar a lot.

Up until the last few months, I was really unsure as to why I had a body. I complained, even here, about how I felt like all the pleasurable experiences I’ve had with it are slowly disappearing. I am pretty darn convinced that the reason the New Boyfriend manifested when he did, was so he could remind me that having a body can be a pretty awesome experience sometimes. I was in a detente with my body before this – I just asked that it function enough to keep me out of the hospital, and in exchange I wouldn’t ask very much of it.

But then I read the above quote, and it really made me think about my relationship with my body. I’m also writing a ritual for an upcoming event that is all about coming to terms with the body you’ve been given. Ah, cosmic timing. It’s hard for me to admit this, but it’s better for my body to send me pain signals than for it not to. At least the pain alerts me to the fact that something is wrong (even if I’m a little tired of that alert and wish I could push some sort of snooze button) so I have a strong impulse to continue what can feel like a fruitless mission to figure out what’s wrong with it. It’s better for me to experience the chronic nausea than just one day start not being able to hold down food. Even the recent skin things have made it clear to me that really, my immune system is totally confused and doesn’t know which way is up.

My body is just another player in this situation – it, too, is doing its best to cope with the circumstances it finds itself in.

That’s why I get so frustrated with all the people who promote the idea that you can “think yourself well”. I get it a lot, because people read the blog and think that if I only focused on wellness, rather than illness; life, instead of death; what abilities I still have, rather than my challenges; I would be a happier, healthier person. I call bullshit.

To insinuate that somehow my illness is a fault of willpower, that I am just not thinking myself well enough or hard enough, is ludicrous. People who try to explain to me that I can’t possibly pray enough, or take metaphysical modalities like Reiki seriously enough, because otherwise they would be working for me. I mean, these people don’t say it in those terms, of course; that would sound callous and insulting. No, instead, they’ll just send me inspirational quotes, or facebook images, that say things like, “If you just breathe, your pain will lead you to the answer.” (I get that one a lot, or ones like it.)

Sometimes I wonder if all this focus on my diet as part of the healing process is just another way to say that if I just had better willpower, better self-control, that somehow I would feel better. I’ve been trying to do this paleo-esque thing, but I will fully admit that sometime around Jon’s death, I started not to care so much. I didn’t see a single benefit coming from it at all – I didn’t lose a pound, I didn’t feel any different (if anything, my pain has gotten worse, and some of my most useful coping mechanisms had been taken away), and it was expensive and annoying. I’m in this weird place with it; I don’t want to give it up completely, because I wholeheartedly believe that there are people who vest a lot of faith in its ability to help me. I think I’ve just lost any sense of motivation, and add in the fact that things have been stressful and emotionally challenging, and it turns into a big mess.

And I am not faultless in this business. When I get depressed, or feel overwhelmed and defeated, I definitely blame myself for not trying hard enough. For not doing enough. For not making more doctor’s appointments, for not following up with each and every doctor’s suggestions. For making choices that feel good right now, rather than decisions that are for my better good. I am my own biggest critic, and I can’t blame other people for coming at me with this attitude that I am too weak to be well without taking the lion’s share of the blame – both for doing it to myself as well, and for letting this attitude penetrate my heart and make me second guess my own commitment to wellness.

One of the spiritual lessons I feel like I’m meant to be learning – not “have learned”, mind you – is that the body can teach us a lot of lessons about our humanness. We tend to look externally for answers, and even when we think we’re looking “internally”, we usually mean that we’re plumbing the depths of our own minds, rather than listening and witnessing what the body has to say. I’m trying to use this blog as a personal tool (it’s not all about you) to jot down ideas that the body inspires in me, in hopes that each quiet little message – and the big painful ones, too – will add up to some larger answer that will eventually make sense, not just to the doctor who figures out what’s going on with me, but to me as a spiritually minded person.

“Whether sick or well, may your body be a vehicle for liberation.” -Kamala Masters

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This is not all of me.

July 4, 2012 at 12:09 am (Living With Chronic Illness, Medical) (, , , , , , )

I haven’t made an official announcement on here, although many of those who read this blog already know – I have started a second blog, called Sex, Gods, and Rock Stars. As I have discussed on here before, in Pushing the Limits, I wanted a place where I could write about all the other aspects of my life – spirit work, sacred sex/kink, being an educator/presenter, ordeal, etc. Dying for a Diagnosis was always meant to be a very specific, topical blog: a place for me to talk about my medical condition as well as the spiritual aspects of chronic illness, dying, and death.

I hope it’s clear (but I know it’s not) that this – this blog and what it discusses – is far from everything to know about me. I was engaged in an online discussion today about how, because what they know of me mostly comes from here, they assumed that I am consumed by my illness. That somehow I am unable to live up to simple obligations, like having a conversation at an event, because I have limited spoons. I also have had events start to try to artificially limit my involvement because the organizers read this blog and think, “Well, if you’re that sick, we shouldn’t ask that much of you.”

This blog is not a journal. What I write here is a very specific subset of all that I am, experience, or know. This blog is a devotional act; I asked Baphomet to assist with my dying process, and S/he asked that I write about it in exchange. This is not the repository of all that is Del, or even a reliable source of understanding what my day-to-day existence is like. In fact, sometimes I end up taking long DfaD breaks because nothing interesting is going on in regards to my medical stuff.

I do have some things to talk about, medically, for those who are interested.

So as you guys know, I usually hate asking lay people for medical advice. I get more unsolicited advice than someone who publishes their phone number in the newspaper. However, I had these skin irritations that looked an awful lot like psoriasis, and I happened to have a friend with psoriasis, so I asked them if they thought that’s what it was. (It’s worthy to note that these irritations happen to be on a part of the body I need a mirror to see.) They flatly denied it, over and over again. So I kept trying to treat them with OTC creams and ointments, but they continued to itch and flake and be irritated for months.

In other skin related news, I developed these odd brown spots during a recent camping-in-a-campground trip. They weren’t bug bites or burns, and I had three of them (two on my arm and one on my breast). They just appeared one day and have faded a little, but not healed. They are definitely not bruises, either.

So finally, between the two things, I broke down and made an appointment to see a dermatologist. I saw Dr. David Lee in Damascus, and I highly recommend him. He was pleasant, efficient, and his office was very pretty. There’s something about dermatology (especially if you watch Grey’s Anatomy and remember the derm thing) that screams luxury, which is probably why I put this off for so long.

It turned out that the irritations are psoriasis. ::shakes head:: I need to listen to my gut more often. They will likely never fully go away, and I may develop more spots like these over time. It’s not uncommon for people with immune system issues to develop psoriasis, as it is in itself an immune dysfunction. I got some steroidal cream for them and it seems to be working well.

The doc was pretty sure the brown dots are nothing to be worried about, but the scary word “biopsy” was thrown around a lot. We decided in the end to wait three months, and when he checks on my psorasis he’ll also see if they’re still there – and if they are, it’s ‘take a bite out of Del’ time. Great. This will be the fourth cancer scare I’ve been through. Whoopie.

Anyway, there’s your medical update. Please go look at the other blog, and maybe subscribe to the updates there, too. I’d really like it if you online stalkers got a much more rounded view of who I am and what my life is like. Also, I write about sex. You like sex, right?

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