Dear Bob and co: Day 8 #NHBPM

Well I'm sort of back, but not really. I have managed to make it from my bed to the couch with a mixture of swearing, moaning and old man shuffling, and that's a definite improvement. I have to sit like I have pole inserted where the sun don't shine and still need to bellow for my minions to supply me with sustenance and pain meds, but all in all I'm taking it as a win. Plus I've managed seven days of blogging in a row and I'm damned if I'll let this stupid body of mine get in the way of sharing Day 8 of my crazy with the world.

(source)

Topic: Write a letter to your health.

Dear Bob (Dysautonomia) and Jeff (my mutant jugular) and my recalcitrant digestive system and the rest of the gang,

What can I say guys? It's been fun? Nope that's not it. It's been a blast? Well maybe with you digestive system, given how my innards have been the last year and a half. Who knew doing a normal Number 2 some time this century would be added to my bucket list? Certainly not me. But that's as good as it gets for those challenged in the regular poo department.

And you Jeff, well you just never know when to quit. You've embraced your mutant side with gusto and seen reluctant to move out. Like a damn cockroach, I'm pretty sure you'll survive the nuclear apocalypse So here's hoping the Mayans were right and/or the zombies are coming. That way there's a chance one of the walking dead will give me an atomic hickey and rip you right out.

But you Bob, well you were my first, so you'll always be special. You and I go way back to that first collapse at work. That delightful trip to the ER where I was asked 28 times if I was pregnant. Apparently they don't teach the ER doctors what the word 'hysterectomy' means any more. You'd think telling them I was womb-challenged might have been a giveaway, but no. You lead me to my first fun time with IV fluids and being tossed out unable to walk, because they couldn't work out was wrong. Good times. I feel like right about now I should break out in a heart-felt rendition of Memory. But no that's right I'm banned from that now thanks to you. Belt out a tune and my pulse pressure disappears and I tend to fall over, complete with dramatic grasping of chest. It's been one rip snorter of a party with you. Did you know we are coming up to seven years together? No? Typical. I guess you can blame it on the brain fog, though I'd prefer to blame it on the boogie. Seems the traditional gift is copper. What copper thing can I get you? A 7.62mm rimless NATO round, sounds like a promising choice.

Frankly I'm over you and your dodgy mates, Bob. I think it's time we broke up and went our separate ways. I've never really been into the Big Love thing anyway, just way to much work. You and all your brother husbands can pack your bags. If it's all the same with you, I really think it's time for all of you to just bugger off. It's definitely not me, it's you. It's very personal. I don't want to be friends. I want to be foot loose and fancy free. Preferably on a beach somewhere, with hot cabana boys bringing we margaritas with tiny umbrellas, oh and foot massages and....

So see you later fellas.
Hit the road Jack.....and Jeff and Guts and Bob and all the rest.
And don't you come back.
No more. No more. No more.

Michelle :)


Day I: Why do I write about my health.
Day 2: Find a quote and use it as inspiration.
Day 3: I don't know about this, but I'd like to.
Day 4: A chronic handbag
Day 5: Health Activist Soapbox 
Day 6: And I've done my back, because it's not like I had anything else going on.
Day 7: Setbacks. Vlog time.

Considering all the male names I use for my disorders I thought this Oz classic by the Divinyls, was perfect.

Pukefest 2011: The most craptastic event of the year.

Well it's on once more.  Yes that's right.  Bob and Jeff have been hard at work getting this project back off the ground.  I was hoping it was canceled this year, but no, it was not to be.  Pukefest  is back, as was evidenced by the big bag of carrots I had to squish down the shower drain with my big toe this morning.

(Every event needs a t-shirt. 

Especially when it has a unicorn with rainbow coloured puke.)

(Are 'carrot bags' an international phenomenon or are they purely Australian, like Vegemite?  I don't think Oprah discussed it on her recent tour, and given she was impressed by fornicating koalas, I'm pretty sure she's the kind of gal who'd be amused by, and would discuss, 'carrot bags'.  For those unfamiliar with the term, every person has a bag somewhere deep inside their bodies that is filled with a never ending supply of carrots.   Even if you haven't eaten a carrot for two years, when you puke, you will expel a bags worth of little orange carrot pieces, hence the existence of a 'carrot bag'.  Come on international readers, I need an answer.  These are the questions that consume me in my post puke haze.  And before you ask I already know that the meaning of life, the universe and everything, is 42, so I am down to pondering the big issues, such as the epidemiology of carrot bags). 

After a very pleasant two months of no nausea or puking post-angioplasty, it's back.  I sort of feel like the morning was was all very "Here's Johnny", except instead of an axe wielding Jack Nicholson, it was my breakfast saying an insane hello.  All this was accompanied by a rather elegant fall from my shower chair.  Naked, pasty, marshmallow body flailing under the falling water, landing legs akimbo, twisted like a pretzel, with a sound akin to a dead squid being slapped on the table at a fish market.  All accompanied be a lovely rendition of, "FRAK!* Frak me. Owwwww.  Frakking stupid shower chair.  FRAK! FRAK! FRAK! Owww. Fraking universe. Frakking useless body.  FRAKKKKKKKKKK........"  Halcyon days my friends.  Halcyon days.

YAY.  WOO BLOODY HOO!  Let me do the traditional 'Return of the Puke' dance of joy.

Slowly the nausea has been creeping back.  A little bit worse each day.  So slowly that for a while I could dismiss it as, 'it's just something I ate', 'it's just the stupid humidity and heat', 'it's not really coming back'.  You can convince yourself of anything if you say it often enough.  Hell, I still believe that Johny Depp is going to turn up n my doorstep offering to give me a back rub any day now.  Not delusional in the slightest, right?

I do wonder what this all means for Jeff, especially as my headaches have also been returning bit by bit.  I'm still not back to the soul crushing, insanity inducing migraines of old, but it is getting worse.  I've had to go out and buy my first lot of poppy derived drugs since my angioplasty, which is rather depressing.   I have a feeling that it all means that Jeff has once more turned my jugular into a dodgy rat infested squat. 

I knew his return was a risk, especially given his fractious nature and resistance during the procedure.  Many others who have the procedure have to have it done again as the veins re-stenose.  My bestie who put me onto the whole CCSVI idea has had it done three times now, so I'm not overly shocked that it may have collapsed again.

Not sure how I feel about it all or what I'll do.  Is two months nausea and migraine free worth the less than pleasant nature of the procedure or the stupidly long time it took me to recover?  I'm still tossing that up.  I have enough medical appointments on the cards as is, so I'm not sure if I want to add in another trip to the thumping tube of death, or The Balloonman at this stage.  If the 'two months' was instead 'two years' I may be more inclined to go back for round two.  If I hit frequent migraines again then maybe.  At present it's all very grey.

For those who live with nausea/puking everyday, you'll know how precious those two months of freedom were.  I have had nausea 24 hours a day, 7days a week since 2006.  Prior to the angioplasty I had not had even a single day's break.  The only thing that varied was the degree.  Was a I slightly nauseous, very nauseous, swallowing down mouthfuls of vomit, or riding the porcelain bus for hours on end.  It was like someone had snuck into my room in the middle of the night and flicked a switch in my body to the 'PUKE ON' position and it stuck.  So two months free has been like winning the lottery.

It's hard to explain what it's like to someone who is rarely ill.  It doesn't get better and you never get used to it.  It's the one symptom I've never learnt to tolerate.  The overall malaise, yes.  The feeling of dizziness every time I stand, yes.  The need to wear a bikini in Winter, yes.  A myriad of other symptoms, yes.  But not the nausea and puking.  It is continually foul and at times rather distressing.  Not to mention the cramp it puts on my social life and potential outings.

To give you an idea.  I went to the supermarket the other day with Mr Grumpy and half way through I thought I was going to throw up next to the bin bags and birthday candles. It was an overwhelming feeling.  The whole body stuff is horrible in itself, but the idea of throwing up in public, the hassle, the people watching, the poor staff having to clean it up, the fact you know you have no control over your body, that all goes through your mind and leaves you rather stressed and anxious.  I managed to get to the disgusting public loos to dry retch and had the joy of swallowing down mouthfuls of vomit on the car ride home.  You don't get used to that.  It never gets better, or easier to deal with, and there is not much in the way of respite.

I can prepare as best as possible, ie I always carry puke bags (see pics below).  I can tell myself it's out of my control.  It's part of Bob.  I can give myself pep talks and shout out positive affirmations till the cows come home, but in reality it sucks.  And each time it's simply 'Craptastic' (thanks Miranda for my new favourite descriptor).

(The cartoon of someone puking makes it all cute and fun right?  

Personally I think the addition of my pink sparkly feather boa really makes it special)

(Who thought it was a good idea to put cartoons on the bag?  

Who has the time, or inclination, to look at witty cartoons whilst they are blowing chinks?)

(Okay, I do like this one.  

There's nothing like a little cartoon puker to sum up the joys of a technicolour yawn).

So yes folks, Kermit was right, it really isn't easy being green.

Pukefest 2011 is truly the most craptastic event of the year.

The bleech Michelle

* Yes I am a sad geek.  The origins of 'frak'.

At least Pukefest 2011 does have a funky little theme song.  Beck, Nausea.

Knock On Wood: Two Weeks Post Angioplasty.

 (photo)

Well it's been two weeks since my ballooning, so I thought I should do an update.

First of all I should clarify, I didn't have a stent inserted with the ballooning.  Current stents are designed for arteries which are structurally different to veins.  Stenting is not recommended for jugular veins at present (although some countries are doing it) and complications can arise.  Personally I'm quite happy not having a foreign body stuck inside my neck.  Jeff is enough to deal with, without adding risks of occlusions, reactions or stents that may go on holidays and travel to your heart.

The procedure I had involves the insertion of a balloon into the vein which is blown up to stretch the walls of the vein to snap the fibers and hopefully stay open with the force of the blood flow.  Think of it as your favourite pair of comfy undies with the overstretched elastic.  The idea is to go from uncomfortable new tight elastic undies that cut into your muffin top, to blissful lying on the couch, with a piece of cake or bag of Dorritos, no bra, manky ugg boots and over-sized granny undies, comfiness.  Hopeful those fibres will stay where they are and not snap back.

Recovery has been slower than I hoped thanks to the fickle nature of Bob.  Stupidly I thought I would be fine after a couple of days like a 'normal' person.  You'd think I'd learn by now.  Everything takes longer to heal with Bob.  Hell, even a papercut takes a year and a half to heal with Bob.  So why I thought this would be any different I don't know.

The feeling of being punched in the neck and groin is slowly passing and hopefully given another week it'll just be a twinge.  I think I may have overdone things a bit in my haste to see if there has been any change to my functioning (eg trying to scrub the bath) which also hasn't really helped things.  Plus this pesky pestilence from the monkey boys refuses to give in.  Just when I think I have it licked, the bastard raises it's ugly head again.  I'm beginning to think it is the Terminator of pestilence.  Just when you think you've frozen it with liquid nitrogen and blown it into little pieces, it melts and reforms into weird looking Agent Doggett guy from the X-Files, determined to take out my tonsils.

I went back to my physio for review this week.  I have learnt that my anal need to have quantifiable data is a tad unusual.  I have given my physio no end of amusement as her first patient to ever request an assessment pre and post a procedure.  Apparently, normal patients don't want to sit through fatigue scales, balance tests and the like, they just focus on getting the procedure done.   But hell, I've never claimed to be normal.

So the results are in, and I've had improvements.  Not, totally cured, going to climb Everest and run the New York Marathon type of improvements, but improvements none the less.  I wont bore you with the nitty gritties but simply:

• My balance has improved.  Rather than flapping my arms like a mad woman and falling over whenever I try to balance, I actually managed to stay upright on my right leg for 30 sec with minimal arm flappage.  Woo Hoo!  I'm excited.  Big Kev Excited people.
• I was able to walk an additional 57m in the 6min test. 
• My strength has improved from wet tissue to soggy soak and maybe even dry sock on my right side.
• My fatigue scores have improved.  Not to normal levels but I am less abnormal.
• I still have a marked difference between my right and left side, with the left being consistently pathetic, but both sides have improved.  For those who have asked, I still have no idea why I have such a marked difference and my physio could only tell me it was abnormal, but not why.
• My shakiness was drastically improved.  Normally if I strain physically (eg stand up) I am like a human Shake Weight.   But on review I had minimal shakage.
• Considering it was 32C when I did my review I should have been far worse (it was 24C when I did my first assessment) so that in and of itself says I've had improvement.

So overall, my baseline has improved which is a good thing, and thanks to my analness, I have the objective data to prove it.  So to those who say any improvements from treating CCSVI are a placebo effect (that's you  douchey neurologists) I say bite me baby. 

Subjectively I've had improvements as well:

• Nausea is still at a minimum.  I've had a couple of times where I felt the first strains of nausea welling up (mostly on particularly hot days), but that's it. I'm still bloated, crampy, irregular or way over regular, so the gastric issues are still there, but this one factor is now missing.  If this is the only long term effect of having Jeff slapped around I'm pretty stoked.
• Still no migraines (insert me doing a little dance).  I've had some headaches but these have been minimal and overall I've had a total of 2 Nurofen Plus in the past two weeks, whereas pre-angioplasty I was eating them like candy.
• I stood up in the shower and washed my hair.  To those without Bob this sounds rather unimpressive, but rest assured those with Bob will all be breathing a collective "Whoa" in amazement at such a feat.  I haven't done this since I brought my shower chair about 8mths ago, and even before that I used to sit on the floor of my manky shower to wash my hair.
• Apparently I'm sharper.  I don't know if I believe this one, but my family, friends and even my physio pointed this out.  Normally I have trouble finishing my sentences thanks to permanent brain fog.  I have trouble finding words, or even following conversations.  This, whilst not back to pre-Bob levels, has all improved.  I even spoke to a girlfriend for about 30mins on the phone and managed to stay coherent.
• I've been told I also have a little bit of colour in my face now.  Not to be pasty is kind of weird.  I'd become very used to rocking pasty chic, so moving from green tinge to normal pale is a novelty that I am quite enjoying.

Unfortunately some things remain the same:

• My pooling is unchanged.  
• My hr and bp have remained pretty at pretty much normal levels of abnormalness (I took multiple readings the week pre and post), though my fluctuations don't seem as extreme and my systolic pressure is generally higher.  My hr has been somewhat higher and I've been having more tachycardia.
• Still having issues with heat intolerance, though I do think it has lessened a bit, in that I can do a little more than before even on a hot day and am recovering a little better.

So that's where I am now.  I'm enjoying and appreciating the improvements and not sweating (Ha! feel the irony) the things that haven't improved.  The IR who did my procedure said he was unable to open Jeff as much as he wanted so I was not expecting a panacea.  As I've said previously, I didn't go into this looking for a cure and I am aware that the research is in it's infancy and there is still controversy as to why this would cause any improvements, but I am happy to ride the wave, or go with the flow (love the play on words) as my best friend suggested.

Funny how a little bit of blood flow can make you feel a whole lot better.  Damn that brain and it's pesky need to drain.

I will be sending all the pre-post data to my IR and cardio, for their review.  I will also be pointing out to the IR that if he has more Bob patients, that he needs to up the drugs, thanks to our tendency to not feel the affects of anesthetics (we're lucky like that).  Why I didn't even think of this beforehand I'll never know, you'd think the fact that the local anesthetic barely worked (OW!) when I had my last arterial line would have stayed in my mind, but no brain fog won once more.   If I have to have this done again I'll be requesting enough drugs to knock out an elephant, and then some.  I will also be asking my IR for some pics so I can show you the new eunuch Jeff.

So I will continue to feel up every piece of wood in my vicinity in the hope that I wont jinx myself by putting my improvements out into the ether.  Any additional wood touching anyone wishes to contribute will be more than welcomed.

Cheers
The Un-puking Michelle :)

Knock on Wood, Amii Stewart (1979), what else could I play?

Off To Meet WIth The Balloonman

 (photo)

My how time flies when you're not having fun.  Thursday is almost here, which also means it's almost time to meet with Balloonman (ie the Interventional Radiologist who'll be doing my angioplasty to reverse the CCSVI).  I'm sure I'm excited.  Really I am.  Don't look at me like that.  I'm telling you the truth.  I am.  I'm super excited about meeting the man who'll be sticking a wire in my leg and threading it up to the main drain for my brain, to blow up balloons.

It's not like I'm scared or anything.  You know me.  I laugh in the face of danger, HA HA.  Not scared.  Not me.  No.  It's a walk in the park.  He does it every day.  I know people who've had it done.  It's classed as a day procedure.  It's not like he could rupture Jeff or anything.  It's not like I'm having nightmares of an exploding Jeff.  No.  Not me.

It's not like I'm going all doom and gloom and thinking all the worst case scenarios (must put away Caplan's Stroke, 3rd Ed, damn neuropsychology training).  It's not like I've been thinking of the myriad ways that Bob could be an arse and be difficult during the procedure.  

As I said, that's just not me.

Happy place.

Happy place.

Happy place.

I have even found a picture of the balloon I think I should request.  What do you think?  I figure a unicorn has all the magic built it.  Nothing shaped like a glittery, rainbow farting, unicorn could do me wrong.

(photo)

I've been told only good things about Balloonman, so I'm hoping that he'll be nice and I'll leave his office on Thursday fully convinced it's a walk in the park.  Or that I'll develop a serious case of fugue till it's all over and Jeff is banished.  Either way, I've told Mr Grumpy that if I forget, he is to demand drugs on my behalf.  I fully intend to sleep through the whole thing as I have absolutely no desire to know what they do. 

Cheers
The completely calm and not panicking Michelle :) 

As a musical accompaniment how could I go past Nena's fabulous, 99 Luftballons (1984).  I know it's about 99 red balloons, but as my German is limited to the names of various pressed meats and Oktoberfest, I have no idea about the rest.  Still didn't stop me from rocking to it, and shouting out "99 Luftballons" at the top of my lungs, at the Bluelight Discos of my youth.

Et tu, Jugular?

News Flash:  Michelle's body has another mutant part.

I know, I know.  It's not really a news flash.  I don't even know why I'm surprised.  Even an idiot could see it coming.  Well any idiot other than me, that is.  Now before any of you, my lovely readers, decides to jump to my defence with cries of, "But Michelle, you're a brilliant and gorgeous woman, with killer thighs" (which is quite sweet of you to say), even my cardio pointed out my ever increasing stupidity at our last appointment.  I'm even pretty sure I saw her doodling a bid dunce cap on my file as we spoke.  So really my misguided belief that I was due for a "normal" result is not that surprising.

September has been a time of enlightenment and discovery on the body front.  First my body added mutant boobs (boob saga available here and here) to my list.  For those of you who can't be bothered reading about my degenerate boobs (and frankly, why would you?), I have boob tissue growing where it should not grow.  This has given Mr Grumpy a new comedic outlet whereby he'll grab my knee or shoulder and start moaning "Ooooh.  Ahhhh.  Yeah baby.  Nice boobies".   He truly is a funny, funny man.  I guess they don't call them "fun bags" for nothing.  Now, I have another exciting bodily development.

As most of you will know I emerged the victor in my battle with the thumping tube of death a few weeks back.  I really should congratulate my opponent.  He never wavered for a minute of our 15 minute death match (think Thunderdome without the metal).  Despite his valient efforts to suffocate and crush me in his belly of doom, I emerged, battered and bruised, but still breathing.  At the time I had no answers.  Just a copy of the films to drive me slowly insane in the intervening weeks between scan and cardio appointment.

It turns out that my diagnosis of "that's some weird shit man", was actually correct.  I really do have some "weird shit" going on.  My left jugular is a mutant; twisted, with multiple stenoses and weird engorged bits hanging off the side going nowhere.  My right is "relatively better".  Which is a bit like saying losing a finger  is "relatively better" than losing a thumb; not all that encouraging and definitely not a reason for celebration.  I mean, I loved The Fly, but no one really wants a mutant Jeff Goldblum living in their neck.  I have however, decided that my left jugular shall forever be known as "Jeff".

(Actually, a naked, pre-splicing with a fly, Jeff Goldblum, is rather disturbing too, The Fly 1986)

(Meet "Jeff")

So what does all this mean?  In simplest terms, the drainage system from my brain is blocked and I need Roto-Rooter to come and sort it out.  Maybe I can get the Roto- Rooter guys from Ghost Hunters to deal with it, that would be rather cool.  Brain drainage and any errant poltergeists, dealt with in one quick visit.  In all seriousness, having my brain sit in a cesspool of manky used blood surely can't be a good thing.  It makes me wonder how much it's contributing to my Bob symptoms.

The only feasible way to try and sort this out is to have a long wire shoved up my leg and threaded up to Jeff and then have a balloon angioplasty to try and open him up again.  I wonder if you can request balloon animals?  I like the idea of Jeff being opened up by a balloon in the shape of a sausage dog, or maybe a giraffe. Here's hoping the doc's at least as talented as those guys who make the balloon animals at kids parties.

The strangest part about all this, is that for years I've had knife-like pains in the left side of my neck (and to a much lesser extent my right), that involved my jaw and ear.  I never really thought much of it, as it was just another pain in the big scheme of things.  Now I find out that this pain is connected with jugular stenosis.  My migraines are also primarily on the left and for many years I have had unexplained piercing ear pain on that side.  So I'm hoping that all of that may resolve, or at least improve, when I get the balloon animal of my choice, in my neck.

I should probably take a step back to explain why I even made the masochistic choice to jump in a dreaded MRI and look at this in the first place.  It all began in my doctors office many moons ago.

At my last appointment my cardio told me in no uncertain terms that there was nothing more she could offer me to combat Bob.  She also added that if I had any ideas, she would be happy to support me.  Luckily she has proven true to her word and given my non-existent choices and progression, is happy to think outside of the box.  So up popped the completely out of left field idea of Chronic Cerebrospinal Venous Insufficiency, or CCSVI.  "What is CCSVI?" I hear you ask. In simplest terms it's where the venous drainage system from the brain and spine are impaired.  This can lead to a number of symptoms, including fatigue, brain fog and heat intolerance (can you guess why I was interested?). 

Currently this is being investigated primarily in MS patients, although more recent studies have shown it to be present in a number of other neurological conditions eg, MND and Parkinson's, and it is being posited as one of the possible causes for indefinable symptoms such as fatigue.  Although, it's still in it's infancy (I could go into the current debate, but the links below explain it much better), there is now enough evidence, that investigation and treatment is now being offered in a number of countries, including Australia.

The clincher for me was when my best friend, who has MS, had the investigations and was found to have stenosis in both jugulars.  Following treatment she had a significant improvement in a number of her symptoms (including fatigue and brain fog) and was visibly 'well' for want of a better term. 

Since then there have been a steadily increasing number of clinical reports and personal accounts of improvements following treatment for CCSVI.  Notably, the interventional radiologist (who is the Director of Radiology at one of Australia's top hospitals, so has some serious credibility) who will be doing my procedure reports that even those patients with no other significant illness who have jugular stenoses repaired, have significant improvements in attention and concentration and fatigue levels.  I'd be pretty happy with that at this point. 


Whilst my dance with the thumping tube of death was unpleasant to say the least, it has at least provided me with some useful information and potentially a chance to alleviate some of my symptoms.  My cardio is also sending me off for a doppler ultrasound of my legs to see if I have similar mutant vessels that may explain why my pooling is so severe.  Who knows, for the first time in nearly five years I may actually be able to have some relief from the day to day drudgery of Bob.

I'm not getting my hopes up yet.  To many times I have been told that a pill or procedure would help, only to be sorely disappointed.  So I'll go in with an open mind and just see what happens.  The scientist in me knows that without objective data it would be easy to say any improvements are due to a placebo effect, so I am going to contact my physio to do some basic tests pre and post angioplasty.  In many ways it's more for me than anyone else.   I want to know that any improvement I am experiencing is 'real' and not just in my deluded head.

I will admit to a few butterflies about the whole process.  Fiddling with the main drains from my brain was not something I had on my Bucket List.   But I figure if I have even a 10% improvement in my fatigue or brain fog, that's worth it at this point.  Besides if I can conquer the thumping tube of death, a balloon in a mutant vein will be a stroll in the park.

For those who are interested:

• Here's a video from earlier this year about CCSVI & MS.

• This is the Australian Facebook site with links to other sites around the world including Canada, the US and UK.

Cheers
Michelle & Jeff :)

Really there is no appropriate musical accompaniment to having a mutant Jeff Goldblum in your neck.   Although I was tempted to add Falling to Pieces, by Faith No More (so apt in so many ways), I decided to go with Remedy, by The Black Crows as that is what I need most at the moment.