Category Archives: ODTAA

One Damn Thing After Another

Update March ’09

Hmmm, yes, well, haven’t written anything here since January (o mea culpa) and while I’ve sat down to post many times the words just haven’t made the transition from brain to keypad.  Let’s face it, it’s been a tough few months and I am not a good conversationalist in these sorts of circumstances.

So … Lashings of pain / health crap / associated unpleasantness, nothing new there but it was really doing my head in, turning it to mush and sparking off other kinds of ickiness.  Item 1:  Early in February (I think) my specialist decided to try me on anti-seizure meds, which are supposed to help with extreme neuropathic pain.  Did they work?  Don’t make me laugh.  After three weeks there’d been no reduction in pain, they induced a really weird and horrible emotional  / mental state, and the worst bit, totally killed off my libido.  This last was the worst;  I wasn’t “only” uninterested in sex / love-making, I couldn’t bear any physical contact at all.  Very, very strange for what is usually a most tactile creature.

Needless to say I chucked the medication but the damage was done;  I was in a fine ol’ state of absolute existential despair and death of joy.   I can’t talk about it because it’s still going on (and on), although slightly reduced in the last couple of weeks, it’s just always there and it’s horrible.  I want to cry like, all the time, and occasionally I succumb but not around Tux because he hates it (because he’s a guy and guys want to fix things and he can’t fix this thing or me) and anyway it’s pointless and I don’t feel any better afterward.  You know how sometimes a good cry can be kind of cleansing?  This aint.

And on top of, or mixed in with all that, is my body, or hormones or biological clock or whatever, is SCREAMING babybabybaby, which is and has always been totally out of the question.  Yes, it’s very sad, and while I’ve always recognised that it wasn’t going to be a possibility for me, knowing I / we can’t have the option of even trying or thinking about options when we’d really like to (because [a] the whole pregnancy thing might kill me or leave me even more disabled; [b] how can I look after an infant when 90% of the time I’m so ill I can barely look after myself?; and [c] what if we had a baby and it had EDS et al which is highly likely, how would I feel?) is really, really hurting just now.  Horribly.  Gah, can’t explain it.

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And THEN, on top of all THAT, are my issues with weight.  I’ve gained so much weight in the last couple of years, due to all the stupid medical procedures (that didn’t work anyway) and medication (ditto) and I can’t fit into the jeans that three years ago I could wriggle out of without undoing the button.  It’s odd, I was always so full of the body-hatred thing, and avoided mirrors and all that, so I have no real idea what I actually looked like, but looking at and measuring my clothes from the 90s and early 00s I was obviously teeny and slender and buff and had a really cute bod.  Now?  Not so much. 

And knowing I look (and FEEL) like a baby hippo is feeding into the despair like so many tributaries into the Amazon . . . And you know, it’s really tricky to get ultra fit and buff and cute again when you spend 90% of your time in bed screaming and crying in pain and being zombied out on Class A drugs (that aren’t even FUN, for feck’s sake like).  So woe is me and all that.  Bleaugghhhhhh.

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So I’m sorry for the doom and gloom;  I’ll try and get up a few harmless fun posts about horses and cats and fitness routines soon to bury this one.  Hang in there.

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Apologia on whinging

Regardless of the impression you may get reading my bloggy-thing, I really, truly, honestly, don’t whinge much about health stuff In Real Life!  Mostly it’s just to Tuxedo and he’s aware of what’s going on before I properly vocalise it, due to whimpering and crying during sleep, and the involuntary moans and grunts when I wake up / get out of bed in the morning.  I might catalogue the various aches and pains if asked but he knows me well enough to know what’s going on, without the details.

Then again I sometimes do feel the need to report “well my head is killing me, my neck muscles are in major spasm so I can’t see let alone think properly, I want to scream, my back is totally screwed, even my fecking toenails hurt and I wish I were DEAD”, but it’s more to explain my general demeanour than a whinge about how terrible my life is.

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Ahhh, crap

Hell yeah, just what I needed   another major health crisis. 

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Mummy daaahling

You may have got the impression, even if you’re an occasional visitor here, that Otterkat and her mother do not get on too well.  I’d love to have a nice, relaxed, easy, sharing relationship with my mum, but I don’t.   The hardest part is that she’s still my mum, I still love her, but sometimes I just want to … not be around her.

She can be incredibly nice and caring, although she lacks a sense of humour and proportion sometimes [Tux says: like, always?].  But she’s also a very dominating personality – in my dramatic moments I’d say she was a domineering bullying old bitch – and unfortunately she expresses that side of her personality mostly with me. 

I’ve tried hard to think why this is – I’m the youngest child, only daughter, “the sick one”, her “baby”.  She continuously infantilises me and my abilities … So okay, I’m easy to bully, therefore she does so.

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Too darn hot

The weather here lately has been horrific, a nightmare. Since Christmas it’s been over 35C every day, heading up to 38C and 40C, with crazy humidity.  Our dog-box of a flat is vile; it is dark and dingy and even when there’s a bit of a mid-afternoon or nightly sea-breeze, the design and placement is such that no matter how many doors/windows/curtains we open, there’s no flow through.  We’ve had the a/c and the fan in the bedroom on constantly but they make little impact – that’s the problem with the relentless heat and humidity, it gets in and damn well stays in.

Yes, we will be glad to move into our new, very own townhouse, you think?  In the meantime we have at least a couple more fortnights of hell.  Hmmm, Hell itself would probably be more fun, come to think of it.  That’s if I believed in it, which I don’t of course.

Along with the atrocious heat, I’ve had another looooong migraine, which is now in it’s fifth week.  Yep, fifth.  Pain, weird visual effects [blurring to mosaic patterns, fuzziness in peripheral vision], more pain.  I’ve spent most of the last month/s in bed.  It gets extremely boring, especially when one’s eyesight is so fucked up one can’t even read.  So that’s been me.  I have been to the doctor, which is a bit of a miracle given how extra-anti-medico I am these days.  I gave my specialist a miss and headed off to my GP/primary care physician, who is incidentally a darling, who checked me over and suggested an increase in dosage of a couple of my candy collection.  And, you know, that collection kinda makes Heath Ledger look like a pussy.  Yes, very bad taste but it’s the truth, that’s what I’m “on” here.  It’s not as fun as you might think, either …

Anyway, the dosage increase didn’t work so after a couple of days of increasing screaming and writhing I nagged and badgered the stubborn receptionist to squeeze me in for another appointment.  That really shits me – it’s not just a sniffle here.  The doc gave me a bunch of yummy, deep, owie injections in my neck – those charming greater occipital nerves of mine up to their old tricks – and while I had a bad day yesterday I am a bit more human today.  I mean, I’m sitting up typing, and I actually prepared and ate dinner.  Zowie.

So, on with the motley.  The very hot, humid motley.  I really can’t describe how disgusting it is, or how enervating, or how bad-tempered it makes people feel.  The big fluffy Maine Coonie cats are feeling it too – I think I might give them poodle cuts next summer – any ideas?  So yep, it’s too darn hot.

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Next up; some foodie and recipe type posts.  Also the heap of book and film reviews I’ve been promising.  I’ll get there … sometime.

Ooh ooh and also, we’re all on babywatch for Dave over at LeSinge.org!  Too too exciting!

Hi-Yo Silver, awaaaaay

Well I’m back – not that I’ve actually been anywhere; the last few weeks have been pretty bad health/pain-wise [as in, worse than the usual status quo “bad”] and I haven’t felt much like posting.  Time spent at the laptop has mostly been aimless web-surfing and drooling over yummy food I don’t have the energy or appetite to make. 

Also desperately craving … well various other things.  When one is in so much pain one can’t bear to be touched, certain activities become quite impossible.  You know, like opening screw-top jars and scrubbing the kitchen floor, things like that.  Things that give me pleasure and are fun and … ahhh feck it; you know, I really can’t include scrubbing the kitchen floor in that group, not even to maintain a weak analogy.

So life has been a bit tough of late, and I’ve been pretty depressed about everything … Well to be honest I’m pretty much always a bit depressed, it’s impossible not to be when circumstances and consequences thereof are so beyond my control and I’m always in screaming pain, but there are times when my strength to deal with it and keep myself “up” simply fails and I fall in an emotionally wobbly heap.  Life is just not fair. Continue reading

Bugger

All well here – unfortunately though I had a bit of a “relapse”.

The procedure I had three weeks ago – the unpleasant and expensive invasive procedure on my neck to kill nerves in order to give me some relief from agonising pain – was pretty much a qualified success and I was beginning to feel some relief for the first time in YEARS even; I was able to decrease my high doses of painkillers (morphine), and I was able to venture out shopping and socialising for the first time in some months.

Until one day I had to take the bus (to a specialist’s appointment, ironically).  Unfortunately for me the driver on the date and route quoted above was atrocious.  He braked heavily approximately every 30 seconds even though the traffic was not heavy and he was in no danger of hitting other vehicles.  He had an unhealthy relationship with the brake pedal, causing passengers and their baggage to slide out of their seats, grab for safety rails, and I also noted a couple of school-children narrowly avoid chinning themselves on the seats in front. 

As for me I experienced constant whiplash effects from the excessive acceleration and braking.  By the time I staggered off the bus somewhere on Kings Park Road I was in extreme pain and had to vomit behind the nearest tree.

So it was back to a state of extreme agonising pain and lots of yukky drugs again.  Can you fucking believe it?  I am just so pissed off and depressed.  I didn’t go through a gross (and expensive) procedure to have some moron of a bus driver bugger me up all over again grrrrrrrrr.  Needless to say I wrote a scorching letter to the public transport authority and if I have lasting damage I’ll damn well sue. <g>

Tux has been a tower or strength through it all, even taking a couple days off here and there (his work are absolute angels about it; although they do get their pound of flesh out of the poor pet) to look after me and ferry heat packs, ice packs and quantities of drugs.  Mmmmm.

I’m starting to pick up once again, and have bought myself one of those groovy foam “NASA” memory pillows, so we shall see if that helps support my poor ol’ neckio.  I ventured into the city yesterday for a bit of shopping/errands and although I had to sleep all day today to make up for it, I’m otherwise fine.  We’re even planning a proper “date night” for tomorrow night – dinner and movie with drinkies at Fibber McGees (in Leederville) – hooray! 

In the meantime – a pox on all filthy bastard bus drivers (except the good, nice ones, who deserve medals, and who I ALWAYS ALWAYS thank).

Catch-up

Gah.  Gah.  GAH.  A month and a half since I updated.  GAH. There have been mitigating circumstances, but really I have no excuse except being a lazy good-for-nothing slob.

House calls and hospitals.  Blah. A couple of days after my last post – around 28 May – I had a serious, serious flare-up episode of pain and stuff.  It was weird, because on the Friday I was feeling fine, pain negligible, quite a good day.  Then out of nowhere at midnight or thereabouts, I was struck – like the proverbial bolt from the heavens –  by intense neck pain.  (It may have had something to do with the exceedingly energetic and enthusiastic lurve-making session we’d been engaged in, but that doesn’t usually have such a detrimental effect; quite the opposite, generally).

Regardless of the increasing doses of high-strength A-Class painkillers I swallowed, the pain continued to intensify; years of practice have made me a guru at relaxation and meditation/bio-feedback techniques but I simply could not control the level of pain.  I was sobbing, screaming, writhing around, out of my mind with the spasms shooting through my neck and up the back of my skull. I was glad we don’t keep a gun in the house; I would have put myself out my misery, no question.  A highly disturbing experience.

By some miracle, my adorable GP does house calls.  Tuxedo called him in some panic – I don’t know what time this was, some ungodly hour of the morning … he turned up, gave me a shot of pethadeine which calmed things down and I was able to sleep.  Except, the next night things ramped up again, the doctor had to be called again, and this time, after giving me a shot of morphine (not nearly as pleasant as the pethadeine) he announced he was going to call my specialist and have me admitted to hospital first thing in the morning.

And that’s what happened.  I spent five days in hospital, having frequent shots which had little effect.  I had two MRIs – not fun when one is a serious claustrophobe and light- and sound-phobic to boot.  Finally I was sent for occipital nerve blocks – huge (and I mean motherfucking HUGE) injections of steroids/cortisones plunged seemingly at random into the back of the skull.  Ouch.  They helped though, without a doubt – brought the pain levels down to “bearable”, and I was allowed to go a couple days later.  I was quite relieved – I hatehatehate hospitals in spite of the good drugs (which, in my case, don’t work so well); so noisy and glaringly bright and not-peaceful, and the food, bleccchhhh.

I’ve since been to a pain specialist to discuss the possibilities of a cryo-rhizotomy, whereby the occipital nerve is killed via freezing.  I wasn’t too keen on the concept before I spoke to the specialist; afterward I felt slightly queasy, given the procedure (brutal and random) and the side effects (ditto).  It was a tough decision – risk the procedure not working and being left with the entire back of my skull totally numb? I finally decided, after much thought and discussion with my lovely GP, to simply go on having the occipital nerve blocks, which are painful enough, initially, but my latest dose has been most successful.  Not that I’m a wimp – it was obvious to me from a physiological/anatomical point of view that the procedure wasn’t going to address or solve the main issue even if it worked. Eventually I’ll have to look at other options … the rhizotomy or major neurosurgery, ick, but in the meantime it’ll do.

The past month, overall, has been pretty shitty– physically and mentally healthwise.  It took me a long time to pick up, and I became very depressed and kind of overwhelmed by everything. While I often have periods of the blues, or black-doggishness, they tend not to last long, but this episode has been longer and more serious than usual. I guess it’s understandable, given the whole constant severe pain, the isolation and restriction and constraints, feeling useless and pathetic – I have even lost interest in food! I do try to stay positive, and talk myself up, and not wallow … but it’s tough.  I am doing all the right things – trying to eat properly, getting back into exercise (easier now that the pain is bearable), getting enough good quality sleep, focusing on other things.  I will get through this “phase” – at least I know it’s only a phase! But yeah, it’s tough going right now. If I didn’t have my wonderful Tuxedo I’d really be up shit creek; he makes everything feel better.  Hee.

Ahh, bugger it.  I promise my next entry will be more interesting and uplifting – maybe something totally trivial and fun, like a review of my latest skin care and make up finds, how ‘bout that? Oh and I have to tell you about the Coldplay concert!

 

Side effects

This post is intended to balance out the recent prevalence of mushy I heart Tuxedo posts.

The pain patch is doing a pretty good job; having a constant level of narcotics soaking into my system has helped smooth out the troughs I’d experience between doses, when the last dose was wearing off but before I could take another (eg, when I was asleep; night-times and morning wakings were baaaaad). I haven’t reduced the dosage of my usual meds, but there has been a slight but noticeable reduction in the screaming writhing pain levels, so I’ve been able to get out a bit more, have a bit more fun. This may be due in part to the weather being very pleasant, and to Tuxedo being home and keeping my mind off boring shite like pain, and keeping my endorphin levels up … oops, broke my own rule already. Sorry. Anyways, so far the pain patch is looking like a good proposition (the other therapies discussed previously are also extremely helpful and enjoyable … ohhh baby).

The thing I really really REALLY hate about the pain patch is the side effects. Not the crazed itching, on site and all over, I’m used to that (standard issue with morphine/opioids). Not the mood swings and depressive effect, I’m used to that too (ditto). Nausea, yawn. But the goddamn constipation, Jesus Tittyfucking Christ!!! I should be used to that, too, as morphine is renowned as a binder-upper of epic proportions. Even relatively small one-off doses given to post-op patients, for example, can have a severe effect requiring suppositories (eeeeeek!!!). Given the dosage I’m on, and the inevitable cumulative effect, I’m often a tad blocked, but given a good diet and lots of water I manage to keep the gut and contents doing the right thing.

But the pain patch, oh dear oh dear oh dear. One more medication with constipation as a side effect = major problem. A few nights ago, after three quarters of an hour spent cramped, sweating, ghost-white and whimpering, about ready to pass out, colonic irrigation started looking like a damn good idea. I was truly full of bricks, but unfortunately not shitting the bastards. Imagine if you went in for a colonoscopy, and the gastroenterologist turned out to be a vindictive ex and filled the tube with quick drying cement. Yeah, like that.

I’ve started hitting the laxatives, and have made myself several gallons of dried fruit compote (a selection of dried pears, apples, apricots, figs and PRUNES for fuck’s sake, simmered in about a quarter cup of water for about five minutes, chilled and to be served with natural Greek-style yoghurt, for those friendly bacteria and extra calcium) so hopefully this dark matter (reference to Futurama – just call me Nibbler) in my gut will get shifting soon. My patience and the skin around the area involved is wearing thin.

Like I needed anymore problems, I mean really. Bad enough having severe chronic disabling pain not responsive to non-narcotic medication; add in a spasming concrete gut and the fun is just beginning. If anyone has some practical suggestions/remedies, please comment or email me. Please.

 

The world is pain

I told you to beware the hiatus, right? So it’s been a while … I have had posts bubbling away in my fevered brain (or what passes for it, these days) – food, politics, engaging conversations, the joy of a new Santoku knife – but have not had the strength to get to the keyboard. That sounds like a real “dog ate my homework” excuse, doesn’t it, but sometimes the dog DOES eat your homework …

The short version is I’ve had a rough time with pain the last couple weeks. Real rough. Excruciating writhing screaming drugs-not-fucking-working rough. I find it odd, to say the least, that “mankind” (well, man, at least, I’m absolving womankind for personal and totally subjective reasons) can not only split atoms and create vile WMDs (actual existent ones!) but are also able to build nuclear reactors, and then when those abominations go kerflooey build housings that will, in theory, last 10,000 years. Yet they cannot come up with a painkiller that fucking WORKS. GAH.

The title of this post is a real bummer, but it is how I feel right now, so tough. My world is reduced to pain, see above, there is no relief or release or end in sight. No cure, no suggestions from doctors and specialists – even the good ones. I know I haven’t got cancer, or total organ failure … but the pain is worse than those who do. And I really can’t cope with it anymore.

I’m like those consumptive Victorian females who took to their beds, dosed up on laudanum and waited on by servants. Except I have no servants and laudanum probably wouldn’t cut it if 280 mgs of morphine per day doesn’t, and I can’t fucking crochet, either. A good day, for me, is when I can make the choice to do the laundry, or a bit of grocery shopping, but not both. See?

I figure I’ve done a good job putting up with it so far – 36 years and counting, considering I didn’t get diagnosed with the various “ailments” until I was 28+. However the pain levels are ramping up, and up, and I’d gladly take a bullet for someone deserving, just to escape. If I was a different sort of animal, not hominid but feline or canine or equine, I’d be put down and yes it would be sad but sometimes that’s the right thing to do.

Which is not to say I am suicidal, please believe me on that. I’m not even depressed – at least, not the depression that can be salved by application of SSRIs et al. I don’t particularly want to die – I do enjoy the bits of life that break up the monotony of painfatiguepain. I adore my husband and don’t want to leave him, and certainly don’t want to leave him with the wreckage of a suicide. I also don’t want to suicide because (a) I think it is wrong, yet at the same time perfectly understandable and (b) I don’t want to fail. I don’t want to make a mess, either.

So that’s out. But I cannot, really truly cannot bear this “life” any longer. It’s too much, you know? So much I want to do – simple stuff, like go cycling with my fella, or go for a fucking walk without crying, maybe go dancing, maybe follow up plans to study or whatever (fucking forget dreams of working, or having a family and that other stuff that’s supposed to make one feel “fulfilled”) – but I’m kept to my bed and tiny apartment as though chained. Which quite often makes me cry with despair – other times I’m all stiff upper lip, I don’t whinge all the time, although you wouldn’t think it, I realise. And it is simply not possible to break those chains. If you think I could, by mind over matter, or the power of prayer, then you haven’t ever suffered this level, so don’t presume, just back right off. Mind over matter has kept me going since I was 8 years old and is getting a trifle weary.

So what does that leave me with, really? Nada. No cure, no let-up, no answers. No hope, any longer, I’ve been crushed way too many times. I remember a particular condescending misogynistic moronic bastard of an “eminent rheumatologist” (and I’ve met a number of those – oh the names I could give you!) who suggested, straight-faced, I try aromatherapy. What I said is unrepeatable even on these pages where my language can be somewhat pungent, however the informed use of hydroponic herbals is a possibility. I’m not a fan of the idea of illegal controlled substances, but if the authorised shit ain’t working? I dare anyone to arrest me or attack or revile me for trying. Walk a mile in my shoes … Hey I’ll be easy on you, you can just spend a day in bed trying not to scream bloody murder, and a night crying in your sleep trying not to disturb your poor hard-working husband on whom you depend, and a little hobbling around like a 95 year old dribbling woman.

Ahh feck it, I’ll be all bright and Pollyanna-ish on the surface tomorrow, and will most likely delete this post.