It’s been a while since I’ve updated you with my health. In fact my last health update was in December last year, when I received the overwhelming news from my neurologist that I’d done what at times seemed like the impossible – I’d achieved IIH remission.
Not sure what I’m talking about? Catch up on the details here.
Since then life has slowly begun to return to a similar normal than before I became sick.
I use the word ‘similar’ because once you’ve been diagnosed with something life changing, that’s exactly what happens. Life changes.
So here’s how things are rolling for me – and my beautiful family – nearly a year after I walked out of the neuro’s office with the happiest tears in my eyes and the strangest feeling in my stomach.
I think it was relief. To be honest, I don’t know if I’ll ever be able to describe it.
Either way, whatever you’re battling at the moment, I truly hope you get to experience that feeling too.
How I’m Managing my IIH Health
Even though I’m in remission, I’ll always have IIH.
When I was first diagnosed and discovered that IIH is such a rare thing that only 1 in 100,000 people are diagnosed with it every year in Australia, I would jokingly trot out the line, “I could’ve used those odds to win lotto. But no. I’ve used them to loose my eyesight.”
Except I haven’t lost my eyesight. Sure, it’s a bit dodgy and I need to wear glasses a lot of the time, but hey, who at 45 years old doesn’t?
medication
At the peak of my IIH recovery I was swallowing more pills a day than I used to in a month.
I had alarms set on my phone to remind me when to take all of the medication – 6.30am, 9.30am. 12.30pm, 6.30pm and 8.30pm. I swear if I wasn’t carrying all those extra kilos back then, if you shook me you would’ve heard me rattle.
Fast forward to today and while I still do have to take some medication, it’s nowhere near the amount it was.
I’m only taking one Diamox tablet a day now – I was taking 8 a day – and I can’t tell you how good it feels to finally have my old energy levels back again.
I still take a daily migraine preventative, but that dosage is the lowest it’s been for the last two years.
I might have to be on both of those tablets for the rest of my life, but one of each I can handle.
weight
I’m 22 kilos lighter than I was 2 years ago. I did loose 28 kilos in total, but have since put 5 back on.
I only lost those last 5 because my old neurologist told me I had to. I basically starved myself to achieve that weight loss – the things we do when given what was actually false hope – and I’m now at a weight that
- I can maintain with relative ease
- doesn’t affect my IIH symptoms
My weight has always been a huge battle for me. I joke that I only have to walk past a bakery and BAM! I’ve gained 2 kilos.
But in reality, I have a crappy thyroid, a low resting metabolic rate and a intense allergic reaction to cardio. It makes me sweat and that’s just not something I’m prepared to put up with.
So basically I’m a walking talking triple threat. If weight gain was the goal.
Sadly, that’s not the goal, but OMG can we all just take a minute to imagine if it was. I would inhale ALL of the sweet and salty things. How about you?
My point to this banter is that the struggle is real.
I struggle every single day to keep my weight under control. I say no to almost everything. I hardly ever drink. I don’t bake for the kids anymore. I AM SO BORING.
But for me, that’s what it takes. A boring approach to food. I have three meals a day and a snack. They’re mostly whole foods and if we have anything outside of that description, I try to just eat half of what’s on my plate.
Sometimes I achieve that, other times I don’t and the whole burger is gone.
Oh and I exercise now too. I know. I am honestly just as shocked by that as you are.
waiting room life
I now see my neuro every 6 months instead of every 6 weeks.
My opthamologist appointments are yearly instead of every 3 months.
I was seeing my endocrinologist every 8 weeks but those appointments are now on hold until the new year.
Blood tests no longer need to be taken weekly.
Depending on which specialist you’re seeing, sitting in a waiting room can be anything from frustrating to upsetting.
But most of all it’s time consuming.
Nobody seems to know how to be on time, despite EVERY SPECIALIST IN THE HISTORY OF EVER confirming your appointment time prior.
“Hello Mrs Smith, it’s Debbie from Doctor He’s Always Late Rooms here. I’m just calling to confirm your 10.03am* appointment on Tuesday. Also I do need to remind you that there is a late fee of $4,982* and a cancellation fee of $7,982* should you need to cancel your appointment.”
I mean if I had a dollar for every time I had to sit through one of those phone calls while eye rolling out loud at the ridiculousness of it, I’d have $573.50*
*probably not accurate times or dollar amounts
Let’s just say that every appointment I’ve had has pretty much taken all day. Even though the appointment itself is 20 mins long.
Having all that time back again is something I’m so grateful for.
life
This IIH thing has taught me so much about myself and others.
It’s changed me and the direction of my life in the most unexpected ways. I mean I own a skin care company now. Who knew that would be a direct result of being diagnosed with such a hideous thing?! Not me, that’s for sure.
I also don’t sweat the small stuff anymore, because the small stuff doesn’t matter.
I don’t waste my time with negative energy, because it’s such a waste of time and emotion.
I trust my gut more than ever, because it’s always right.
I’m kinder to myself, because when you’re not kind to yourself it’s very hard to be kind to others.
I’ve also learned that there’s good in everything bad.
It definitely doesn’t feel like it when you’re going through whatever that bad thing is. But once the fog lifts and you come out the other side of it, the good eventually appears.
We’ve all got something in our lives to battle. Whatever your something is, know that you can conquer it. You can and you will.
Because no one is you and THAT is your power.
Thank you very much very encouraging
Would like to know where you are now