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 🙂


How to make friends and influence POTSy’s

Last weekend I met a group of girls from the POTS and Dysautonomia Australia FB group I joined a few months ago.  It can be quite difficult to organise things when people come from all over Australia and it can be hard to commit to attending things when you have such an unpredictable medical condition.  There were 5 of us in total, we met for lunch and had a great time.

It was really nice to be able to talk about all those things specific to dysautonomia that most people don’t quite understand.  We swapped amusing (and not so amusing) stories of fainting episodes, talked about how dysautonomia had changed our lives and what we were doing with our lives now and how so little is known about our group of medical conditions.  We compared our lists of diagnoses (I was the only one with NCS not POTS) and found a lot of things that overlapped – we also discussed medical alert bracelets.  We talked about symptoms and how we manage symptoms; compression stockings, electrolyte replacement etc and compared our heart rate monitors (most with chest straps, mine is just a touch-activated watch so doesn’t monitor constantly).  We talked about all our different medications and compared our pill boxes that ranged in size and design from a sexy compact compartmentalised one with a mirror in it to my little round container with the scallop shell that I bought in a silver shop on a street in Santiago after completing the Camino.

We discussed how wonderful it was to actually have a diagnosis (It seems the average wait was 18 months – I take myself out of the average as 7 years kinda throws it out a bit) and how it all finally made sense when we did – it’s all due to a lack of oxygen to my brain and body!  I can’t help it if I get tired easily, can’t remember stuff and get confused and can’t find the right word sometimes!  We talked about travel – aeroplanes can be quite bad for us.  We talked about plans and dreams for the future.  We also discussed diet and exercise (it’s hard to maintain your weight on some medications and if you can’t do much in the way of regular exercise) and found out that a lot of the weight loss meal plans are very bad for people with dysautonomia as they do not contain nearly enough salt etc.  We talked a lot about specialists (mainly cardiologists), useless doctors and people who had made us feel useless, worse or pathetic by their lack of understanding and sympathy and of course the angels in our lives (mums generally great, brothers often not so much but surprising on occasion).

When I told my mum what we had talked about afterwards she said ‘oh dear’ in her ‘I’m not entirely sure if that’s healthy’ voice but you know what, it was great!  They’re such a positive and strong bunch of women and it was fantastic to finally have people to talk to who know what it’s like from personal experience.  Not a specialist, not a friend of someone who has it or knows someone distantly who does – actual, real people!  We could talk about it freely without the fear that people present would find our discussion boring or feel like we were complaining and one of the best parts was when someone asked if anyone else experienced a random symptom and someone else did.  I have had (for the last 7 years) flushing on one side of my face only.  Completely randomly just one cheek or ear will get really hot and the rest of my face will be normal temperature.  I had never heard of anyone having that and last weekend I discovered that I am not the only one!  I do not in fact have strange alien creatures that have taken over my body, I am human and I am not alone!

So all in all it was a very positive experience and at the end when we were leaving we realised there had been so much to talk about that nobody remembered to take photos!  I hope we can all get together again soon and that those of us working on the Dysautonomia Australia an New Zealand (DANZ) website can get that up and complete soon so there’s more information out there for people who need it.

The rain in Spain stays mainly in the plain – or where I’m walking

Finally back in the world of the living after nearly 2 weeks of sinus-infection-induced low-blood-pressure-haze and facing the prospect of going overseas for a month with the brain of an Alzheimer’s patient and the balance and endurance of a new lamb.  It has certainly been an interesting, incredibly frustrating and also kinda scary two weeks.  Interesting because I was, once again, unable to construct proper sentences, remember simple tasks or things that had happened and frequently ended up losing my train of thought or the word I was about to use.  I was also vague and a little ridiculous so I apologise for my recent vague and rambling posts about dreams etc.  Frustrating because I could hardly stand up for more than 10 minutes, ended up collapsed on the floor 3 times on the day I got sick and seemed to have eternally shaky hands.  And scary because it did not seem to be getting any better.

Still, where I am now is only almost where I was a couple of weeks ago, not back where I was last year.  At least it is an improvement; even if I did just fail miserably at my PT session!  The increased dose of Florinef (oral steroid related to cortisone that helps blood pressure increase due to fluid retention) seems to have helped my plummeting blood pressure but it is still not ideal.  I am seeing my cardiologist next week and she will be starting me on a new medication named Midodrine which is a vasoconstrictor (makes the blood vessels narrower to increase pressure) and seems to be the ‘gold standard’ for treating low blood pressure.  The only problem is you have to have it every 3 hours you are awake or something like that – looks like I might need a sports watch!  On top of that it might also mean I need extra meds and things when I have my laporoscopy in July, at least the Anaesthetist is one that does cardiac lists so he and my cardiologist should be able to work it out.

On Friday I had the final blood test for the satisfying the protocol for IgG infusions.  After several months of blood tests, antibiotics, getting sick, vaccination and more blood tests I am finally on the home stretch for seeing if it really is this IgG Subclass deficiency thing that is causing my recurrent sinus infections.  So if the test results say I can not make antibodies to the Pneumococcal vaccine I had a month ago there will be nothing more between me and these infusions and a (hopefully) normally functioning immune system – very exciting!  Now I just have to wait some more for the test results (insert elevator/thinking music here!).

I managed to fit everything into my pack and it only weighs 8kg (without water) so that is pretty good I think!  And I have rubber caps for the hiking poles so they don’t look quite so scary and airline staff will be more inclined to let me take them on the plane instead of being worried I would try and hold up the plane or skewer someone with one!  I have one more orthotic and boot arrangement to try before I give in and see the podiatrist again about new orthotics.  His solution was a bit of chiropody felt on the side of the orthotic to fill in the gap in the boot but that hasn’t worked properly and neither does putting the boots insole over the orthotic – my new solution is to try the orthotic over the top of the insole, we shall see.  So it looks like I’m pretty set now, I just have to wait for my guide book to arrive from Angus and Robertson (yeah I’m regretting that!).  After a rather cold and soggy weekend (actually a rather soggy year if we want to be more precise – I think the drought has well and truly broken – see photo!) I’m quite happy at the prospect of heading to Europe where it will be nearly summer with a daily average of 16-25 degrees!  Unfortunately Galicia, the area I will be walking in, is the more rainy province so I am quite glad I have now sorted out my wet weather protection equipment – my new pack cover fits perfectly and I am quite glad I bought that lightweight rain jacket a couple of years ago for Sound Relief as it is perfect.  The waterproof over-pants with green gaffa tape over the tear in the right butt cheek (not my doing) leave a bit to be desired but hey, it’s the Camino, not a fashion parade!

I have also been looking at getting myself a medical alert bracelet – particularly as I will be traveling by myself.  It is advisable for anyone with a medical condition that can affect their level of consciousness (or a myriad of other condition) to have one in case of emergency.  I will have to ask my cardiologist what she thinks I should put on it because the chances are that if I get in trouble very few people I would run in to on the way would know what Recurrent Vasovagal Syncope or Orthostatic Hypotension or Neurocardiogenic Syncope or Dysautonomia or POTS (depending on what you want to call it) actually is.  I’ve been having a look online to get some ideas about what other people with the same or similar conditions have written on their bracelets and the general consensus is; make it as simple and clear as possible.  I still have no idea what to write!  But I have decided to go with MedicAlert because they store your medical information in a database and engrave a phone number on your alert tag that can be called from anywhere in the world in case of emergency, even if their products aren’t as fancy as others on the market.  I would definitely suggest to anyone with complex medical issues that MedicAlert would be the way to go – obviously if you only need something simple like ‘Diabetic – on Insulin’, or ‘Allergic to Bee Stings – carries EpiPen’ it will fit on most tags you can find and then you can opt for the pretty coloured ones or fancy designs.  Now I just have to wait for my IgG diagnosis confirmation, medication change and I’ll be able to order it.  The only problem then will be translating it in to Spanish once I get it – I could probably hang a plastic keyring on it with the translation (as incredibly dorky as that sounds).  Lets see – Dame electrolytes por favor (I wonder how you say electrolytes in Spanish…)!

He he, maybe I should get a collar made for Ding that has ‘my owner has a Medic Alert ID’ – they are often made for dogs etc, I wonder if the company would be insulted if I asked them to make one for a Beanie Baby keyring!  And then if I did the tag would be as big as his head anyway 😉
It’s great having a mascot, particularly one as cute and personable as Ding!

In further news, I have signed up for Twitter so I can easily post updates on the road – once I sort out the whole international phone/SIM situation.  Look me up! Username: Clairelizz

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