It's Just a Flesh Wound aka I'm a Dumbarse.

A few years back I wrote a post about the internal dilemma I face each time a health issue crops up. Well dilemma is probably the wrong word. In reality the dilemma is token at best. The outcome is pretty well decided from the first stirrings of “hmmm, well that's not normal.” I think it's more to sooth myself into saying,“Well you weighed that one up well, Michelle. You looked at the data provided, did a review of your medical history and the examined all the pros and cons. Well done. You Rock.” Whereas the reality is far more, “Shit that's not right. Should I go in? Nah. She'll be right. It's just a flesh wound.”

Normal is not a word I completely understand these days. It might as well be written in Sanskrit for all I can decipher. My view of health and what constitutes a worry is seriously skewed.

Recently I was in having my IV Saline and notice a MET poster on the wall of the room.

Three of the criteria. Systolic under 90 and HR under 50 or over 130 made me giggle. Both of these indicators are so common in a world of autonomic dysfunction. Systolic of 90 is a walk in the park. A complete doddle in fact. Pre-pacemaker low 40s or high 30s for a hr were a daily occurrence. For my POTS friends 130+ occurs on days ending in 'y'. New or unrelenting chest pain again something most with Dysautonomia contend with on a daily basis. We are a walking (okay stumbling, swaying, staggering) MET call.

Normal is relative.

The combination of a skewed normal and a medical system that often treats you like you are lying when your obs don't make sense (I'm looking at you nurse who took my temperature with 3 different types of thermometer before she would believe my reading of 35.2 C.) means I am not a frequenter of the medical system until I am in “dumbarse” territory, as Mr Grumpy would describe it. And even then it's not guaranteed.

Two recent incidents come to mind.

1) We have only recently moved to a new town. About 3am of the first night in the motel I had excruciating kidney pain. Not a first be any means, but still not pleasant. I tossed up that I was taking more desmopressin than usual to cope with the move and our current heatwave, and that my last few kidney tests had come back relatively okay. I knew I was dehydrated, the skin that still stands up on my hands when I pinch it tells me this. But the idea of negotiating a new, country, ER in the middle of the night was just too much to contend with when I was feeling so incredibly unwell (you have to admire the strength of my convoluted reasoning right there). Plus the whole, “I refuse to start the first day in our new town with an ER trip”. That just feels like I'm jinxing myself. So I road it out. When I mentioned it to Mr Grumpy the next day I got the whole “dumbarse” routine. And he's probably right (don't tell him I said that) I should have gone in. I should probably go in now and get fluids, but here I am sitting tapping away on my dying lap top, laying on bed, not going in.

2) Incident 2 is an ongoing one that started the weekend before Christmas. As regular readers will know I received two new diagnoses (Myotonic Muscular Dystrophy and Gastroparesis) and my beloved Great Dane, Thor, passed away all in the fortnight before Christmas. Merry Fricken Christmas, folks! When that weekend I discovered I could nolonger move the toes on my right foot it was a bit of a final straw. I couldn't take one more shitty thing at that point. I had a day of self-pity and sobbing into my pillow. Then I wiped the snot from my face and hit play on the cassette tape known as “Michelle's Hardcore Denial Hits of the Summer.” ER be damned. That's where really sick people go.

I told myself that it'd come back. It was just the lack of blood flow. Or a pinched nerve. You know, the usual suspects. I did the basic stroke routine (perks of having worked in stroke rehab). Then I pretended like it wasn't an issue. By the time two-weeks had passed and I still had no movement I finally thought it was time to see my GP. Needless to say I received another “you're a dumbarse” lecture and she rang my neuro on the spot. Of course their were no emergency appointments, and given the fact I was neither in pain or dying, I decided not to push it and just take the earliest available.

As I lie here today I have minimal movement back. But minimal is some, in my deranged mind. I'm choosing to ignore the accompanying reduced movement in my ankle. What reduced movement? What toes? What ankle? (See, I'm good at this). I have an appointment booked for two weeks to review things. But the idea of having to drive the 2 ½ hrs back to the city so soon after the move is not inviting and I am thinking of cancelling as I have another appointment with her a month later. When I factor in the lack of pain and dying, I can easily reason that it's not that important.

And so I sit here in “dumbarse” territory again.

The place where past negative medical experiences and an impressive ability to normalise the completely abnormal meet.

But you know, it's all okay. It's not like I'm really sick. It's nothing but a flesh wound.

Michelle :)

Update: Since I wrote this post I have had a moment of sanity and have decided to go to my neuro appointment next week. 

Denial is my weapon of choice.

So it seems I've found my Holy Grail and it's goat-shaped.

Dysautonomia is a weird collection of illnesses. Even if you are lucky enough to find your subtype (eg Postural Orthostatic Tachycardia Syndrome (POTS), Neurocardiogenic Syncope (NCS), Pure Autonomic Failure(PAF)) that is no guarantee you'll know the specific cause of your subtype. One glance at patient forums and you'll find that the majority of patients seem to have either no, or only a rough, idea of what is causing their symptoms. It's one of the conundrums with research in the area. Even in a room full of POTS patients, the causes can be as varied as autoimmune diseases, mitochondrial disorders, connective tissue disorders and a plethora of genetic conditions. If you're stuck with only a weird collection of autonomic symptoms (waves from this side of the keyboard) the choices are even greater. But we all hold out hope of finding our particular cause.

You see until you know your underlying cause all you are doing is managing your symptoms. That's not a cure. And frequently, given the complexity of our presentations, not all that successful. Finding your cause is the illness equivalent of the quest for the Holy Grail. Something very few seem lucky enough to do, either due to complexity or a lack of medical support. But a cause gives you something to actively treat and potentially, cure.

I can't even begin to articulate how important having a name for what you are experiencing can be. Legitimacy, tangibility, hope. It's all wrapped up in that diagnostic title. The shadow is gone. The grey is gone. And good or bad, the defeat of that uncertainty, can be an amazingly cathartic experience.

For seven years I have sought my Holy Grail. Frequently, the search has been more Monty Python-esque, than inspirational quest. I have lived the hope/disappointment cycle throughout. Hope for a cause/diagnosis/treatment, and disappointment time and again. I wrote about the toll it takes way back in my first post:

"How do you explain to someone that not getting a serious or life-threatening diagnosis is disappointing? After months of living with uncertainty and the fear and the doubt it generates, you start to long for a concrete diagnosis no matter what it is. How do you plan your life or explain your illness when it is this shadow being that can’t be measured or understood. I’m a rather practical kind of person. If I know what it is I can educate myself, I can plan my life; I can do what needs to be done. I can be legitimately ill." (July, 2009)

It's exhausting.  

After seven, nearly 8 yrs now, I went into my neurology appointment on Wednesday with mixed feelings. The neurologists who conducted my SFEMGs said they were pretty sure they'd found my cause. Since then I have lived with a mix of excitement, dread (the look on their faces was less than encouraging), and the resignation that it could have been nothing more than yet another diagnosis-tease.

But it seems the completely unexpected abnormalities they discovered have led me to my grail.

Not Myaesthenia Gravis (MG) as was expected. No it couldn't be that simple. I had resigned myself to MG. Had started the research process and moved forward. There are treatments. There is research. There are organisations. But no.

   

You see those pesky out of left-field abnormalities led me down a different path. Myotonia. Or to be more precise,

adult-onset Myotonic Muscular Dystrophy (MMD). 

What you haven't heard of it? Me neither. Yep, I have developed something no one has heard of (again). Even better I have developed something for which there is no treatment (well there's one, but it damages your heart and as my neuro admitted very few of her patients take it). That is degenerative. That is progressive. That, and what is stressing me the most, is autosomal dominant.

I did bloods on Wednesday to try and narrow it down from the 3 possible subtypes, two of which are systemic and have an autonomic component. So now I have to wait, again, until March for those answers. How much it explains my autonomic issues? I'm unsure. Is it an all or partial answer is unclear and even the available research seems to disagree? For now I'm putting it all aside and concentrating on getting through Christmas.

I like my neurologist. She's calm, caring and practical. That works well for me. I'm extremely lucky that she has taken this journey with me and never given up. She has held my hand, directed when needed, and listened to my need to find an answer and helped me achieve that. Something very few patients seem to experience.

She didn't even bat an eyelid when I asked for the 12th time "are you sure there are no other possible causes?"

(This is the face of someone for whom 12th time is not the charm.)

Looking back it was all a bit surreal.

Me dolled up with my Dorothy shoes. My son taking photos all over the room. Discussions about glitter trails throughout her rooms. Me reading and re-reading the paperwork from the neurophysiology department. All whilst being told that I have a degenerative neuromuscular disorder and organising genetic sequencing.

All the while documenting the moments of what it's like to get one of those diagnoses. 

After so many years ill, and so many years of the hope/disappointment cycle, it simply left me numb. I remember smiling. Laughing at a joke. Asking questions. And underneath it all, numbness.

If this was the start of my illness journey I think I may have freaked out far more, but now? That I have a degenerative condition is not a shock. That's been clear to all and sundry. That my muscles have been deteriorating? Also not a shock. I can see the muscle wasting in my right hand and on the left side of my face, and the weakness is spreading. I knew whatever was happening, my health is deteriorating and I'd come to terms with that a long time ago. As Mr Grumpy pointed out the other day, I am far more resilient these days. Far more than at the start. And you do have to find a way of coming to terms with your lot in life, otherwise the toll is too great to bear. However, I do reserve the right to freak out in the near future. To cry and yell and rock in the corner.

That evening my eldest son got it into his head that after such a day I needed a margarita. So out he went and brought all the ingredients and made me a large margarita in a salt rimmed glass. He's a good boy.

But for now numb, compartmentalisation, blinkers, denial and margaritas (well one margarita, and a week later I still feel hung over) are my method of coping.

Plus, at the moment, I just can't face talking about it again.

Oh and my love of goats now makes sense as one of my 3 options, Myotonia Congenita, is the same disorder that afflicts the famous Fainting Goats. They truly are my animal!

Michelle

I was going to add the obvious Hunters & Collectors classic Holy Grail as my musical accompaniment. But I think Throw Your arms Around Me, is more appropriate, because dear readers, I could do with a big virtual hug right about now.  

Being Sick Is A Pain In The....Well Everywhere

I don't think of myself as someone that lives with chronic pain.  When I list out my stupidly long list of health debacles, pain really doesn't get a mention.  I read about the pain some of my bloggy friends experience and I am in awe of what they contend with on a daily basis. 

It's really not until I'm talking to someone else about the myriad joys of being chronically ill and they mention certain types of pain, that I realise that hey I have pain, I have pain daily.  How did I miss this?  I take the pills, I grab the heat packs or the ice packs and yet somehow I missed the connection of why.  I have even had physio for pain, even when I was in hospital for Bob I also ended up in the pain group.  I know I'm dull but I didn't realise I was that dull.  Somehow I've managed to put that little gem away for safe keeping, and like my gold locket and my ipod head phones, I've forgotten where that place is, or that I had even had them.

If I think back, pain and I have been hanging out for a while.  When I was 12, I was diagnosed with juvenile arthritis.  Now there was a fun period in my life.  Swollen joints that were so painful even the gentlest touch felt like someone was beating me with a sledge hammer. Of course having my hands bandaged each day for support and protection made me so attractive to the opposite sex.  I was of course beating them off with a stick clasped gingerly in my white cotton clad hands.  Hell who wouldn't want to date the girl that smelt like Bengay and dressed like an extra from The Mummy (1932, none of this modern crap).

(What guy wouldn't want to date me, The Gore Master).

Of course being a teenager I loved being identifiably different.  Not only did I never grow boobs or have enough money for the right clothes, but I looked and smelt like a menthol freak.  I couldn't play sport, which if you come from a small country town is similar to coming out of the closet, or admitting that you enjoy opera.  I couldn't even pick up a pen to write, and this being the dark ages there were no lap tops or voice recorders.  Well at least none that didn't require a fork lift and a bunch of burly butt-crack revealing men to manoeuvre. 

My joy was further compounded by the fact that my pesky hips didn't want to stay in their sockets.  Get out of bed, hip pops out.  Stand at the sink doing dishes, hip pops out.  Walk down a step, hip pops out.  Breath, hip pops out.  Now days I'd probably get a EDS diagnosis, but back then it was a case of take pain meds and hope for the best.  Ahhh halcyon days.  Basically I spent my teenage years living with dodgy joints and keeping the Bengay, Tiger Balm, Dencor Rub and DeepHeat companies is business.  Add in the early anti-inflammatories that stripped your stomach, pain killers and the weird green plant, that tasted like a combination of cut grass and rancid dog turds that my mum forced me to eat, and my teenage years were a blast.

At about 16 Flo finally arrived much to my disappointment.  I remember being horrified at her arrival whilst I was at school.  Even worse was the fact that the only person available to pick me up was my brother.  So I got my period talk from my brother.  Mortified doesn't being to describe the feeling of your brother describing a period and handing you a pad the size of the titanic and a tampon, and describing how to use them.  Mind you after the embarrassment he sat me on the couch with a can of coke, fish and chips and we watched Christine (1983) and The Warriors (1979) on his cool new video player complete with state of the art remote control connected to the player by a cord.  Nothing like watching a killer demon car and NYC gang violence to forget the trauma of your first period.

Within months I was in regular excruciating abdominal pain.  After many years of being told it was just period pain and to suck it up, turns out I had endometriosis.  Back then there was little to no information available, and few in the way of treatment options.  I spent years curled up in a little ball bawling my eyes out thanks to pain.   Combine that with the lovely surgeries to fix it, which never worked, and the hormones that made me even more of the bitch from hell, well it was one big pain filled teens and 20's.  For anyone starting on that path let me just say demand good pain relief after a laparoscopy.  Funnily enough lasering your insides hurts.

Luckily I found a doc who was willing to whip out my lady bits when I was 25 so that pain is over for the most part.  I also learnt the joy of the morphine pump during those days.  Oh little pump how I loved you.  I still remember the doctor being worried that I would no longer feel like a woman once I was wombless, because being is constant pain made me feel like such a womanly sex bomb beforehand.  Amazingly I have managed to not feel like a man trapped in a womans body, despite the surgery.  Phew!  Medical douches!  When I think back on that time it always makes me think of the scene from The Life of Brian, with Stan/Loretta, "But he doesn't have a womb".


Obviously my body was so unhappy about breaking up with it's best friend pain that it thought it'd chuck in degenerative discs to liven things up.  The pain is pretty much permanent now.  It hurts like hell when another of those pesky discs decides to pop out, but other than that it's just white noise pain.  I do love sciatic pain though (all just adds to my 80-year-old persona), pain shooting down your arse is so pleasant.  Luckily those discs tend to pop out in groups of 2 or 3, and now have moved from my lower back to between my shoulder blades.  I think the words shit fight best describe my body at this point.

I still remember the first time they popped, ironically in my advanced pilates class.  First there was a pop, then a crunch, then an owwwwwwwwwwwwwwwwww.  Even better was that I had to present my doctoral thesis at a conference in another city.  I still don't recall what I said thanks to pain meds, but I did get the postgrad prize for research excellence so maybe I should pop more pain pills and my brain would come back. 

Now, courtesy of Bob, I add to my collection in the form of migraines, gastro and neuropathic pain, none of which really respond to traditional pain management.  I've been told that the migraines will end when Bob is finally under control.  Ha!  Gastro pain is again some of the Bob joy.  The neuropathic pain is due to SNAFU, which has no known cause to treat.  I'm pretty sure that at some point in the middle of the night my toes were stuck in a lava bath.  There's nothing like feeling like someone is rubbing crushed glass into your toes every second of the day. Fun, fun, fun.  I have also made the mistake of using a nail brush on my toes, this is a mistake you only make once when you have neuropathy.  I'm pretty sure I could have impressed a sailor with my swearing that day.

Probably my favourite part of the whole pain experience is that the meds best suited to controlling the pain, create a pain that can only be relieved by a prune juice enema delivered by firehose.  Medical science at it's best.  Those extra special herbaceous brownies are looking pretty good right about now.

Yet despite all this I don't think of myself as living with chronic pain.  Obviously I have a screw loose somewhere.  I'm pretty sure part of the problem is that when you have multiple health issues you end up focussing on the most pressing issue in the moment and for me that is now Bob related crap.  If I sat down and thought about it all I would turn into one of those psychiatric patients who sits in a corner all day long rocking back and forth.  Denial is a useful tool at times.  As my friend Michele from Dysautonomia Normal says, "Ostrich mode is my very favourite mode to be in". 

Luckily to balance all that, I do have patches of numbness.  Variety is the spice of lie after all. Though I must admit not realising my arm was stuck on the rose bush was a little disconcerting.  Especially when I yanked my 't-shirt' off the bush only to realise later on it was actually my skin and there was blood and a rose thorn sticking out of my arm.  But hey, I'm not complaining, there's gotta be a cool party trick in there somewhere and it sure as hell shits on pain.

So really when I look at it, I am the proud owner of the Ford Pinto of bodies.  No wonder Mr Grumpy is always saying that he married into the shallow end of the gene pool on that fateful day all those years ago.  Personally I blame my parents.  Geeze Mum and Dad, you could've put a little more effort into the making.  I know I was the last gasp and all but you could've at least put your hip into it, actually maybe that's where they went wrong.  Perfunctory sex is bad on so many levels.  (Lucky, thanks to my mum's computer phobia and my father's denial, they don't read my blog, not that I haven't said the same to them.  Sometimes it's worth the look on their faces).

Okay I'm off, time to celebrate the last day of my immature mid-thirties.  Tomorrow I am officially in grown up land of my late-thirties. Here's hoping that the only pain will be attributed to chocolate toxicity and some very nice fermented grape juice.

Cheers
Michelle :)