Happy (belated) Blogiversary to me :)

Once again I have been neglecting my blog and now the 1 year anniversary from my first published post has been and gone – oops!  In my defence I have been rather busy doing things like study, socialise, volunteer with St John, make stuff to sell at markets and things and, of course, not being able to leave the house due to symptom flare-ups.  So all in all a productive month I think!  The dysautonomia stuff is being its usual lovely roller coaster but I am in a much better place with it than I was this time last year.  My medications seem to be helping stabilise it a bit and my cardiologist is, as always, amazing.  I have an exercise physiology session once a week with an awesome group of POTS girls which has proved to be entertaining so far – we have more classes that don’t end in hospital visits than ones that do and there is usually a fair amount of giggling and chattering during exercise.  I know the general theory is if you can talk you’re not exercising hard enough but it’s not that kind of exercise – it’s more pilates based using a reformer and other nifty machines.

But enough of now, this is the time for reflection, for looking back to 1 year ago and seeing where I was, what I was doing and how far I have come from there.  Well I think we can safely say I have travelled quite a distance.  Just over a year ago I read a book, a very inspiring book – a book that made me want to travel across the globe and walk in the footsteps of thousands upon thousands of others throughout the course of history.  In just over one month it will be a year since I got on that plane at Tullamarine bound for Europe and glory in the form of the Camino.  I had no idea what to expect, what wonderful (or otherwise) things would happen, what I would see and experience, what I would learn about both life and myself or who I would meet on the way.  I had been to Paris before so that wasn’t a huge leap, I was meeting up with family so it wasn’t really outside my comfort zone and I had a basic grasp of French (degraded over years of neglect from an intermediate grasp of French!).  The bit that came after would be the challenge.  I was so caught up with the excitement and magnitude of what I was about to attempt that I didn’t really think about what would happen when I was finally on my own – out in the world, in a foreign country whose language (beyond ‘Hola’, ‘Grazias’, ‘Buen Camino’ and ‘donde esta cajero automatico’) I didn’t know.  And how in the hell was I going to walk that far every day?

Some days now I don’t know how I did it, when I can hardly move from fatigue or when I can hardly stand because my heart runs a marathon and my blood pressure slowly gives in to the pull of gravity when I do it seems a bit surreal.  Did I imagine the whole thing?  But no, I was there, I have the mark on my arm and my name on a certificate that I can’t read to prove it.  Prove it to myself and the world so I never forget what I can do, what I have done and trust me, with something as crappy as a chronic illness like dysautonomia you need it.  And I really need to go back to the studio and get it touched up!  Oh, and I also have this picture!

The Camino was life condensed.  You could live a decade in one day – I am still not completely sure how or why but it happened.  You almost need a day of rest and reflection after every day of walking just to take it all in and do it justice.  And for anyone wanting to get a taste of the Camino without leaving home then the movie ‘The Way’ has just come to Australia.  Directed by Emilio Estevez and starring Martin Sheen it is a beautiful story about loss, grief, and really finding yourself in the most unexpected place.  I highly recommend it 🙂
Even though the part that I walked doesn’t actually feature in the movie – it’s been completely skipped over which is frustrating!  And sad as Galicia was beautiful in the spring, but I guess when you have over 800km to chose from you can’t have it all in the movie!

Better get back to work – I have a stall at an awesome market tomorrow and need to get some stuff finished!  It’s ‘Worn Wild’ – the alternative fashion market that comes to Melbourne twice a year.  I am so excited to be part of it this year!  Here’s a flyer – check it out!  And if you’re interested here is the link to my facebook page for my accessories company – Cherry Pie Accessories – which will hopefully be a company soon instead of a hobby!

That’s all from me today
Buen Camino everyone 🙂

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Thoughts for Friday

It’s been a while since my last post, not for lack of writing material – no, quite a lot has happened lately!  But for lack of inspiration.  Now I am inspired doubly but can’t remember the second thing I was inspired to write about (stupid dysautonomia brain!).

Today I have something sad to write about, something I didn’t really think would happen to be honest but I guess I always knew the possibility was there.  Any chronic medical condition has its complications and challenges in ways mental, physical and emotional and its important to keep going despite all this but then there are the events that shake you to the core and send shivers down your spine.  Recently the dysautonomia community was shocked by the death of one of our own.  Taken way before her time by complications of a condition not generally believed to be fatal she was by all accounts a loving, generous and inspirational person.  Our thoughts go out to her family and friends.

I did not know her personally but the messages of love and grief from people whose lives she touched around the world are heart-breakingly beautiful and help portray the image of a strong and caring woman who refused to let her illness rule the way she lived her life.  She will be greatly missed.

I was further saddened to hear that she is by no means the first to pass away from complications related to dysautonomia, not even the first this year.  There are different types of dysautonomia that stem from different causes and have a variety of symptoms but the common trend is that the heart’s function is affected in some way.  Whatever the diagnosis is, POTS, NCS, OI, IST – whether it is low or high blood pressure, tachycardia or other irregular heart rate the heart is involved as part of the dysfunctioning autonomic nervous system response and has to work harder than normal.  Our hearts were not made to run marathons without the rest of our bodies participating – it’s no wonder we feel dreadful when it happens.  Don’t get me wrong, I would actually love to be able to run a marathon but I would like my entire body to actively participate at once – imagine if your legs did it by themselves, or your lungs, that would be a bit odd right?  Well why do so many people, health professional and lay-person alike, think it can’t be such a bad thing for our hearts to do it?

Now this condition (or group of conditions) is becoming a bit more widely acknowledged we are starting to see more results; new studies into causes and treatments, new treatments made available, word of mouth from others in the same position but for some this is, sadly, too late.  Who knows how many people have died from dysautonomia-related causes, we will probably never know.  We’re told repeatedly that it could be worse, we could have cancer, we could be terminal – all we ask is to be taken seriously.  It doesn’t take much out of your busy day to look up what dysautonomia is or be a little sympathetic, a little insight and compassion goes a long way.

And here’s a little something to help with the insight 🙂

Raising awareness and bringing joy with a pair of sparkly, red shoes

As soon as I saw the ruby red, satin and sequin, kitten-heeled sandals in the store I knew I HAD to have them.  They were perfect for my year 12 formal and I had desperately wanted a pair of sparkly ruby shoes for as long as I could remember after seeing them over and over again on my favourite childhood movie; The Wizard of Oz.  That movie never failed to bring me toe-tapping, heel-clicking, fuzzy-warm-feeling joy and my desire to have my own pair of dorothy shoes never went away even as my movie collection expanded.  That movie is special to me in so many ways.  The song, ‘Somewhere Over the Rainbow’ was my favourite song growing up.  For years my grandmother would play it on the piano and I would sing.  Even when her fingers were too painfully arthritic to play anything else she would still play that song for me and now, whenever I hear it, it never fails to bring back those memories.  For a long time after she passed away I couldn’t listen to it and it still makes me cry, it was our special song and while I can never sing it with her again I still have the memories.

The Wizard of Oz (and that song in particular) made me believe as a child that there actually was another world over the rainbow full of magic, music and mystery.  That good will always triumph over evil, that tin men and scarecrows can come to life and sing and dance, that courage, love and intelligence are in all of us even if it doesn’t appear that way at first, and that there will never, ever be any place like home and all we have to do to get there is believe and click our heels together 3 times (that part still gives me goosebumps!).  That pair of shoes is the embodiment of all those messages.  They are love, joy, laughter and carefree innocence and I have a sneaking suspicion that this movie may be the origin of my shoe obsession – well really, everyone wants them and they’re just too darn cute!

So my pretty red shoes didn’t last forever – they were satin, somewhere along the way something got spilled on them and eventually the sequins started to fall off.  They also weren’t the most comfortable or practical shoes in the world but that was really beside the point.  The point is how they made me feel and that is where the joy and awareness part of this post comes in.  A fellow dysautonomia sufferer (and owner of a fabulous, home-made pair of dorothy shoes) had an insomnia-fuelled brainwave.  In her muddled, sleep-deprived state very early one morning she thought to herself, ‘what is missing from the lives of most dysautonomia sufferers?’ AND (even more impressively for 3am), found the answer to that question was; Joy!  And the obvious vessel is dorothy shoes.  She then took it a little bit further and thought about how dorothy shoes could be used to bring joy AND promote awareness of dysautonomia and came up with; The Dorothy Shoe Project.  Which is a stroke of genius really, for any time of the day!

So, what does the Dorothy Shoe Project involve? you ask.  Well, the idea is to post a few pairs of Dorothy shoes to Dysautonomia sufferers around the world – so far she has had expressions of interest from Australia, the UK, USA, Canada and New Zealand (I believe) and take photos wearing them.  Wearing them anywhere doing anything (well, you know what I mean, let’s keep it PG please people!) particularly anything silly that involves copious amounts of joy and laughter AND the person wearing them has to have dysautonomia of any type.  I am so excited about this project, it gives me another chance to wear sparkly red shoes and, lets face it, there can never be too many chances for that!

If you or anyone you know might be interested in participating in the Dorothy Shoe Project, raising awareness about the project or even sponsoring the project, check out ‘Living With Bob (Dysautonomia)‘.

November is over!

It’s the first of December, that means November is officially over and the Christmas month has started!  That also means that NaNoWriMo is also over and while I didn’t reach the targeted 50,000 words I am very happy with what I did achieve in what has turned out to be one of the busiest months of the year for me!  Here’s a brief synopsis and I hope you’re as excited as me over what I’ve been able to do this month after months of being virtually house-bound.

  • Wrote around 30% of the target for NaNoWriMo (while not 50,000 words it’s still quite a few!)
  • Had 5 market stalls
  • Made over 50 hair clips
  • Made over 30 headbands
  • Had 6 physio appointments
  • One specialist appointment
  • 2 Mickel therapy appointments
  • Dinner with friends 4 times
  • Lunch with friends 3 times
  • 2 St John’s divisional meetings
  • 3 St John’s shifts (2 on one day finishing at 12am)
  • Saw KD Lang in concert (as a St John’s volunteer)
  • Got my hair cut
  • Picked up my little bro from the airport after his 5 month overseas adventure
  • Saw my personal trainer 4 times
  • Went to a Christmas party
  • Saw part of an international roller derby bout (while I was having a market stall)
  • Celebrated with friends at an engagement party
  • Got a tattoo to commemorate my Camino

So yes, I may not have reached the goal of 50,000 words but I decided that it really didn’t matter as I could do so many more exciting things during the month and when you have been out of action for so long that is really the main thing!  Right now I couldn’t be happier though I still have my wobbly days and occasional random tachycardia.  It turns out that my HR was the lowest I’ve measured it at in ages yesterday during the tattoo process – go figure!  Whether it’s the Mickel therapy, the change in doses for Midodrine and Fludrocortisone, being relaxed and happy or a combination of all of the above that is helping the healing along (who really knows!), the important thing is that it’s happening and I’m well and truly on the road to recovery – with the occasional few steps backwards of course.

Here’s a picture of my tattoo – the photo isn’t great and colour isn’t quite right yet but of course I have to wait until it settles down a bit and finishes peeling and healing before we can really tell what it’s going to look like.  Who knows, one day I may get a yellow arrow to go with it but for now I am very happy with my scallop shell and the tattooist was fantastic.  He worked with me for over an hour trying to get the design right before we started and proved to be a great guy and entertaining conversational companion throughout.  For anyone looking to get a tattoo and can travel to Port Melbourne or Chapel St I highly recommend Victims of Ink.

50k for awareness/NaNoWriMo – it’s complicated

‘Well you have been in the wars!’  Announced Dr Caldwell as he looked over her recent notes 2 days after her emergency visit.  ‘I understand you saw Dr Harman last week and this week you had a visit to Northside emergency department, what happened there?’  Sarah described her episode of dizziness and other symptoms and subsequent visit to the emergency department in detail.  Dr Caldwell nodded and exclaimed throughout.  ‘Well now, that would have been frustrating.  And what does your mother say about all this?’
‘She told me she actually has a couple of patients who have had the same thing recently and has heard of others, there seems to be a virus going around but that stupid doctor was so convinced it was anything other than something he’d actually have to bother himself with there was really no point in my being there.’
‘That is interesting, I have also heard of something similar going around so that might just be it.  And of course you’ve been so unwell lately and have a tendency to be susceptible to things I guess it’s not really unexpected that something else would come along.  It’s irritating nonetheless!  And how is Dr Simmonds going with your immune function testing?’  Sarah brought him up to date on the progress of her newest round of tests and scans that the immunologist had ordered.  ‘So he thinks it is quite likely that your recurrent sinus infections are the result of this deficiency in Immunoglobulin levels?  Interesting!  I guess that would explain it quite well and it would be great to be finally getting somewhere.’
‘It certainly would’ Sarah sighed, ‘it’s just so frustrating having no answers but all the evidence that there is something going on that’s not right!  Unfortunately there’s so much protocol in place for this test because the only treatment for this type of immune deficiency is an infusion of gammaglobulin, which is a human blood product and has to be released from the blood bank.  They can’t synthesise it like they can with some hormones.’
‘Yes of course, and then you have to consider the risks of having a transfusion of human blood products, there is always the possibility that there are things out there that we don’t have the technology to detect yet – I mean look what has happened in the past with CJD, hepatitis and AIDS.  It’s a tough decision, have you thought much about it?’
‘I have a bit’ she replied slowly, ‘I don’t know, I feel I’m prepared to try almost anything so I can get my life back.  It’s been 7 years now and this is the only real lead we’ve gotten.  I know it won’t solve everything but if it can just stop me from getting these infections all the time that throw any improvement back in my face it would be worth it.’  She sighed ‘and yes, I am aware of the dangers, I studied virology as part of my degree before I did nursing.’

‘Talk me through the process Sarah’ Dr Caldwell asked, ‘where are you up to and what is left to do?’  She took a deep breath.
‘Well, The first step is the initial blood test to see if the results are significant enough to warrant further investigation, the results of that can take up to a month to come back because it is only ever done when there are enough samples to warrant it and not many people have this test.  When my results came back there were two sub-types of Immunoglobulin G that I am deficient in and they are the ones that are often found to be deficient in people with recurrent infections.  The second step is a long-term course of antibiotics – 6 months, which I have 2 more months to go on.  After that, if there are still infections despite the antibiotics there is a vaccination.  Then 4 weeks after the vaccination, after your body has had time to build up antibodies to it, there is another one of those month-long blood tests and if the results are significant I then have to wait for the blood bank to approve the release of the immunoglobulin infusion.  If they do, I then have to have it every month or so for a year or longer at around a grand a pop!’
‘Wow’ he said quietly, ‘that is a lot to take in’
‘Ha!’ she laughed bitterly, ‘you’re telling me!  And this is why I desperately need to keep my job.  Dr Harman’s medical certificate was inadequate, it did not contain the information my employer required and it was slightly insulting to boot.’
‘Oh dear!’ he exclaimed, ‘well he did insist on writing them himself’, did the appointment go well otherwise?’
‘Let me just say Dr Harman and I will never see eye to eye on anything I don’t think!’  She grinned
‘Oh dear me!  Well let’s get this sorted and then it’s one less thing you have to worry about!  The certificate I gave you last time allowed you to reduce your fortnightly shifts from 9 to 7, lets bring it down to 5 and include a bit about those late-early shift combinations that seem to affect your health so much.  Hopefully whoever is doing your rosters will take note of that and you’ll be able to work to the end of your contract in a few months and then hopefully you’ll have picked up enough to either get it renewed or find something else.’
‘Sounds great Dr Caldwell, and what is even more great is that in a few days I get to go on a cruise holiday with a bunch of friends to some sunny and gorgeous islands in the pacific!  Pete can’t come but we’re going to have a fantastic time anyway.  My contract expires two weeks after I return but for a week at least I get to forget about it!’

She left the doctors clinic feeling more positive about her situation than she had for months but it didn’t last very long.  She was able to fax her medical certificate in to work but had to take more days off to recover from the virus she had come down with.  It took nearly 2 weeks for the dizziness and fatigue to reduce to a level that meant she was able to work again.  The new roster was faxed to her and the first thing she noticed was that out of the 5 shifts she now had in the next coming fortnight four of them were a pm-am shift combination – something that Dr Caldwell had specifically requested against in her certificate.  She was filled with disappointment and a growing sense that her contract was not likely to be renewed after all.

Needing some support and constructive advice she attempted to talk it over with Pete;  ‘you know how I feel about all of this Sares.’  He replied with a sigh, ‘I hate it; I hate how our lives have changed, how it makes us feel, how it dictates what we can and can’t do.  I can’t stand it.  We used to go out and have fun, hell, we used to BE fun!  Now we’re lucky if we get out once a month and you’re always too tired or whatever to stay long whenever we do anyway!’
‘Yeah thanks Pete, that’s actually not what I was talking about but hey, thanks for your support anyway.’  She snapped and walked off.

He found her in their slightly overgrown garden, sitting on the picnic table.  ‘I’m sorry’ he sat down beside her ‘I am, I just don’t know how much more of it I can take.’  Tears sprang to her eyes and she turned her head away from him so he couldn’t see.
‘You don’t have to take it; you don’t have to take anything!  You don’t have to wake up every day feeling like you need about a thousand hours more sleep, you don’t have to struggle every minute just to remain upright, you don’t have to eat tonnes of sugar and caffeine just because it might possibly compensate ever so slightly for the energy or concentration that you’re lacking and you don’t have to watch your 20’s, supposedly the best years of your life, pass you by without being able to do a thing about it.  You can go out, I’m not stopping you.  You don’t have to stay here all the time just because you feel sorry for me; you know how much I hate that.  I’m not some wounded bird that needs wrapping in cotton wool, I have an illness, it affects my life and what I can do with it but I’m not broken Pete, and I have a mother, you don’t need to do that!  Just because I can’t do things doesn’t mean you don’t have to.  How many times do I have to tell you that?  I know it’s hard for you too Pete but it doesn’t mean you have to give up your life too!’  She looked into his eyes.
‘Yeah I know’ he looked at his hands ‘I want to share it with you, you know?  You’re my girl.  You’re smart, funny and beautiful and I want the world to see that, it kills me to see you locked up in the house, a prisoner to your own body.  I want to help you, to take it all away.  You were sick when we met but I didn’t care.  Your courage touched my heart, you’re so special and amazing and yeah, I did feel a bit sorry for you and I could see you needed help too, help I was more than happy to give you.  But Sarah, even though I love you so much I don’t know how much more I can give.’
‘Does that mean you are just here because you feel sorry for me.’
‘Don’t be ridiculous!’  He snapped ‘you’re such a martyr, all the time, it drives me crazy!’  He jumped up from the table ‘look, you’re going away on that cruise tomorrow, I think that’s great, it’ll give us both some time to think.  In fact I might head over to my brothers place tonight and stay there for a few days too.  There’s a game on this evening and he’s having a few mates over for drinks and a barbeque.  It’ll be good to get out, this house is stifling.’  And with that he stormed inside.  She could hear him stomping around the house and 5 minutes later the front door slammed.  It was then she realised she hadn’t tried to stop him.

 

I’ve been a bit slack with my writing over the last few days so really have to step up the pace…
Hope you enjoyed the latest instalment!

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