Christmas, a time for giving... blood samples

Wow, it's quite difficult to believe that I started this blog in July 2014!

The good news is that we have arrived. January 2015 is our starting point... I've commenced the treatment.

Let's set January 2016 as a goal. Not a finishing line as such, but a good chance to measure what progress has been made.

To all those who helped us get to this point, our eternal gratitude is yours.

Have a wonderful 2015 and I'll be back with something hopefully a little more interesting to read pretty soon.

Good health to you!

Still Here!

My apologies to the one or two people who may have been waiting for an update! It's been a hectic, draining couple of months due in part to a move intestate.

We will have gone broadband up and running shortly, freeing me from the shackles of my smartphone. At that point I'll provide a full update.

For now though, I can let you know that since moving from Brisbane to Canberra I have seen a GP here that I've seen previously. They have given me provisional assurance that they would be willing to read over the material associated with my treatment and, provided it does no harm, they would be willing to participate in the treatment itself. This is (provisionally) great news and a source of no small relief. Seriously good news that has removed some anxiety for us. Anyone with Meniere's can tell you that anxiety is the enemy but is so often knocking at your door.

Doc has the material now, so we now wait for her to hopefully give the green light and we can get going with blood tests. First time in my life I've looked forward to a blood test, that's for sure.

I remain incredibly grateful for the support so many gave us via gofundme and will do my best to let you know of any progress over the weeks and months to come.

Have a great week and be well.

Thank you, thank you, thank you.

Before I say anything else, I'd like to offer our sincerest thanks to everyone who has contributed to our gofundme campaign. People we know and love, long time internet friends and complete strangers.... thank you all for your wonderful generosity.

As a result we can now start the admin process and should soon commence the new treatment. We will therefore be closing the gofundme page. I will continue to post updates here, so if you have an interest in how it all pans out over the next couple of years, bookmark this page or subscribe to the blog and I'll keep you in the loop.    

It's been an interesting few weeks, starting with my first ever visit to a vestibular rehabilitation therapist (VRT). This is something I've been meaning to do for a few months now. I have to say that, even at this early stage, I'm glad I went.
     
The primary objective of VRT is to compensate for the damage done to the vestibular system. Basically, for those of us whose bodies send us balance signals that are out of whack, VRT works to get your body to compensate for that through a series of "challenging" exercises.

The therapist appeared to have a good understanding of Meniere's (never take anything for granted!). After a good chat about my situation and expectations, she seemed more than a little relieved that I didn't expect her to "cure" me. I'd be happy if she could, don't get me wrong! In this case I'll settle for a bit of assistance.
                                                           
Here's something to ponder: Not one ENT of the four I've seen in three states ever mentioned vestibular rehab.

Not one. Fortunately for me I currently see a thorough and thoughtful GP who suggested VRT. Hooray for her.
  
So... after a series of tests designed to challenge my balance (which was good considering how long I've had Meniere's, but kind of shit compared to mid-20s me), the therapist placed blacked-out goggles over my eyes. Comfortable enough that this wasn't some sort of prank involving D grade celebrities, fake blood and cries of "gotcha!", I trusted the therapist's instructions. The mask experience involved a lot of head wobbling. In fact, VRT in general seems to be about head wobbling. Being a VRT therapist in India must be bloody frustrating.

Back to the blackout mask.  Little did I know, there was a night vision camera built into the mask that recorded my eye movements. Turns out I have nystagmus. It's involuntary movement of the eye; Wikipedia has a good GIF in case you're curious to see what it looks like:

http://en.m.wikipedia.org/wiki/Nystagmus

To see my own eye do this was fascinating. It also explains why I occasionally feel like everything is in motion, despite not feeling much vertigo, even with my eyes closed.  Fortunately for me it's milder than what you see in that GIF, and usually happens in response to over stimulation. In fact it happened just now as I skimmed my eyes over the letters on the screen. It feels a bit like someone is shaking the TV screen at the back of your head. Hey, here's another curious fact: In nearly 10 years, not one ENT explained to me what nystagmus is, or even acknowledged its existence, until this year. Even then it was just the surgeon ticking off a box of symptoms.

I don't want this to turn into an ENT bashing session, because it's not meant to be. Surgeons in general are very intelligent, highly skilled people who know waaaaay more about the human ear than this here mouth breather. But they are still people. People can be stubborn. And people can be forgetful. So don't assume that any one person you speak to is the font of all knowledge. Doctors are people and straight up forget stuff. Ask questions and don't be afraid to sound silly in front of a surgeon. Sometimes they'll be grateful for the company.

So back to the therapy and the head wobbles and the spy goggles facing the wrong way. I now have a series of exercises I need to do each day, designed to challenge my body into compensating for the damage to my ear's balance systems. It involves a lot of looking at small crosses and wobbling my head while standing on one leg. Like a sobriety test home kit.

It sucks. It makes me feel sick and I don't want to do it. I mean, who wants to feel sick? Screw that.

But I want to keep the balance I have. I want to humiliate my kids at sport when I'm in my 50s. I want to run away from the boogieman in a dark house without thinking I'm going to break my nose on a door frame.
                                                  
So I'll do the stupid exercises and let's hope they really help.
                                          
For all of you who supported our efforts to raise funds to start the Stephen Spring treatment program, we are now at the stage of discussing blood tests with doctors. Once we get further into this I will be able to share more information about my health. Please bear in mind that I am legally bound by a nondisclosure agreement that prevents me from discussing the substances used in the vaccine. I will however keep you updated on when I start the treatment and how my body responds over time. With luck it will, in the long run, be a good news story!       

In other news, my football team are in rebuilding mode (this means we missed the finals). I have decided to grow a beard. I await my wife's punishment, which will be both subtle and severe.

Episode IV: A New Twit

Hi.

Welcome and thanks for visiting.

I guess the most pressing question for any new blog to answer is also a pretty big one: Why am I here?

The answer to that question, for this blog at least, is simple:

I am a stay at home dad and I also have Meniere's disease. So I thought I'd talk about it.

Incidentally, if you want to know why YOU exist, I can't help you there. For the most part I'm more interested in the hows than I am in the whys. Do we even need a reason anyway?

Sorry, that's way too heavy a topic to get into this early on. Forget I said anything and let's get back to the point of this blog. 

Now, I'll admit that 'stay at home dad with Meniere's' is a bit of a niche market. You won't walk into too many gift shops and see a novelty mug saying "I may get rotational vertigo, but at least my parenting skills remain effective". If nothing else, that's not catchy at all. Plus it would be a freaking huge mug to fit all that text on it. Or you'd have to use a tiny font and no one could read it. What a stupid idea for a novelty mug. What the hell is wrong with you?

Mugs aside, it's my niche. It's what I've come to know. I've always thought that it would be a good idea to add another voice to what is very much a misunderstood medical condition. So here it is.

I think it's important for people new to the condition to know that you can live a great life with Meniere's. It's important for the people around them to know that this isn't a joke. It's serious stuff.

Besides watching as Meniere's disease is wiped from the face of the Earth in my lifetime, there are a couple of things I'd like to achieve. One is for everyone who has been diagnosed lately to know a few things. So I'll say them now before you lose interest and close this page:

You are not invisible. 

Your suffering is real. It is understood and acknowledged by many. Including me. Don't let anyone ever trivialise your symptoms because they aren't on the surface. Everyone who has Meniere's goes through this experience, often with people they should be able to trust, and it's wrong. 

Many brilliant people (although maybe not enough... it's never enough) are working to make you feel better. They may not all be pulling in the same direction right now but they're working hard and learning more each day.

You have an immense amount to contribute. Your life is still yours. It's your choice as to how you face each day, and every day is an opportunity to achieve something positive, whether it's something grand or just getting out of bed.

Can I also suggest that you don't spend all your time thinking about Meniere's? I think I can suggest it, this is my blog after all. 

Find whatever positive outlet you have in life and squeeze that mother like it's full of lasagne. Or whatever it is you like to eat... I made lasagne this week, if you couldn't tell. Extra cheese because shut up, I want it. 

And no, I'm not just being a condescending wanker. Honest! Ok, I probably am, I have a history of being a bit of a tool.

But everything I said is still true and I remind myself of it when I feel sick and sorry for myself.

Now that I've put on my prettiest floral blouse and sung kumbaya to you in a faltering falsetto, I'll tell you a bit about myself.

I'm in my late 30s. I have a two year old son, a seven month old daughter and a magnificent wife, all of whom I adore completely and without question. I'm at home while my wife works, so there's that to talk about. 

I'm also hopeful of commencing a new treatment for Meniere's disease in the near future and have established a gofundme page to help raise a bit of money to get that particular little ball rolling:

http://www.gofundme.com/bigr7f0

People have been extraordinarily generous to us and we are very, very grateful. This blog will also serve to keep the page's donors updated on my progress. It's the very least we can do. 

When I had the idea for this blog I thought I'd include a summary of Meniere's disease; its history, symptoms and so on. But you know what? Bugger that. It makes you violently dizzy, you lose hearing, you get tinnitus and your ears feels full. Your can also get brain fog, nystagmus (eyes moving uncontrollably), drop attacks where you simply fall to the floor, and others. Beyond that, you can use Google. There's a fair chance you used it to find me. The explanations you'll find out there can be infinitely better than anything I can come up with. I'm just a dumb guy who gets dizzy and says "I beg your pardon?" a lot.

Note that I said CAN be better, not WILL be better. There's an awful lot of misinformation out there, so if you're trawling for info on Meniere's you can actually rely on, be sure to dial your bullshit detector up to maximum and strap that thing on so tight that it leaves a bruise.

So instead of pretending to know what I'm talking about, I'll just give you a brief rundown of my experience.

In 2005 I was with the woman I wanted to marry, we were planning our life together and all seemed well. I got what I thought was an infection in my right ear; it was ringing, it felt blocked. I felt seasick. Off I went to the doc and she said it was most likely a nasty infection. Take a week off and if you don't feel better, come back and see me. Something like that. I had a bunch of sick leave saved, the dizziness was annoying but tolerable and I had Elder Scrolls on the XBox waiting for me. Sweet! 

A week later and I was still no good, despite my progress as a mage in the game. At some point I had my first real  rotational vertigo attack but I genuinely can't remember when it was. Thankfully my GP was all over it. She sent me straight off to an ENT who ordered an audiogram and a CT scan to rule out acoustic schwannoma. Cancer in your ear doodads, basically. If you have Meniere's symptoms like vertigo, tinnitus, hearing loss and fullness, GET A SCAN. Rule it out or catch it early. Simple.

Cancer free and with mild hearing loss in the troublesome ear, I was told that I most likely had Meniere's disease. The doc's advice sounded like the following, bearing in mind that I was suffering from hearing loss, so some elements may have been lost in translation:

"We don't know what causes it, but your ear is busted. It will always be busted and will probably be more busted over time. One day your other ear might break too. We can't fix it. Sorry. Here's some medication to help with the vomiting brought on by the vertigo. Here's a pamphlet on reducing sodium intake. It basically says 'don't eat canned soup or fast food'. If you feel really bad, wrap a towel around your neck, put a bucket on your lap, get your wife to drive you to the hospital and tell them you have Meniere's. Oh, and before you go, here's a suppository for your wife to shove up your clacker if the vomiting brings the tablets up. When's the wedding?"

From that point on I had a handful of attacks per year for several years. No big deal. I mean, they SUCKED but you can still live your life without major hassles. I had one shocker of an attack at Alcatraz, which if you're unaware is a closed prison island in San Francisco with a remarkable and long history stretching far beyond its days as a place for Clint Eastwood to escape from. I somehow managed (AKA with the amazing support of my wife) to negotiate a ferry ride then a cable car ride back to the hotel where I took some valium and slept like a log floating in chloroform. Alcatraz is great, by the way. Worth a ferry trip, if not a vertigo attack.

A couple of years ago we had a magnificent baby boy. Around then is when things got trickier. I got attacks every few weeks, then every couple of weeks. But I still worked full time and whenever I "took Meniere’s seriously", which meant stay away from my triggers like coffee and stress, my symptoms were lessened. So, based on the better part of a decade of experience, plus conversations with those who had lived with the condition for longer than me, we got on with life . We moved interstate in 2013 and BANG... I had attacks every three days or so. You can't learn a brand new job in that condition, let alone turn up often enough to keep your job. So I ended up resigning to work on my health. I'm still gutted about that and am determined to ultimately get back to work. Hence the hope to try a new treatment. 

We moved again for the birth of our gorgeous baby girl, as we basically needed the help. With plenty of much appreciated support from family, we've started clawing our way back towards the life we had. My ear is better than it was, although I still have far more dizziness than I would wish on anyone. Despite this most days are happy ones, our kids are flourishing and we are once again moving onwards and upwards with our lives. 

That being said, I want this vertigo gone. So does everyone with Meniere's. My good ear has mild tinnitus now, so this is the time to try something that might well stop it in its tracks and actually restore some hearing and balance function.

I'll go into more detail about my potential new treatment in my next entry. And if it all goes according to plan, I'll use this blog to keep you updated as to how it's all going.

I'll also talk a bit about being a stay at home dad. It's been a roller coaster and I love it, so I can hopefully turn that experience into something vaguely intelligible. Hopefully this first entry wasn't too painful either. It was written on my phone while holding a sleeping baby, which may explain a few things. Thank you for getting this far either way.

Health and happiness to you.

Justin