Tag Archives: addisons disease

Forgive, Forget, Accept

It’s been just over six weeks since I started taking Plaquenil and Lyrica…once again. On the merry-go-round, 27 months in. And yes, I’m still on the testosterone replacement.

I’ve spoken about my rollercoaster. The emotion. The frustration. The desperation.

I’ve spoken about the hope and excitement. Could this be part of the puzzle?

And I remind myself daily….this too shall pass.

I’ve tried to incorporate 10mins of meditation daily, with a great app built by an Aussie, so that’s got to be a good start, eh?

If you struggle to meditate, like I do, try 1 Giant Mind. It’s the only guided meditation that works for me, I feel like I’ve struck gold.

I’ve also been listening to podcasts from Sean Croxton at Underground Wellness, a holistic and functional filter of what’s making us sick and what we can do to make ourselves better.

I’ve started experimenting with the autoimmune protocol by Dr Sarah Ballantyne and have been tending to my coconut milk kefir. I’ve been watching it ferment, patiently…which is ironic, because patience has never been my forte.

For me it’s another opportunity to experiment, to challenge and to watch my body react.

Curious Child_Canstock

And let me tell you kefir has made bathroom visits a delight!

And in the strive for continuous improvement, like every keen Type-A person, I even sought a second opinion from another medical guru.

After 30 minutes of consultation with some of the most random questions I’ve ever received from any medical professional, Professor D, concludes with, “I’d like to help you, you seem like a nice lady.”

And I knew instantly what he meant. Because had I come to him 27 months earlier I would have been classed as “not such a nice lady.”

I was angry. Angry at the world, and at my body, at my former employer…someone had failed, and someone had to work it out…pronto!

But time is a beautiful leveller and I assured him I wasn’t expecting a miracle diagnosis or cure, I just wanted to check whether someone had missed something, somewhere or was this it, do I just need to learn to deal with the pain and fatigue. Is this simply, mind over matter?

“When you walked in the door, I instantly thought – Addison’s disease.”

And then he explained why. The excess levels of prednisone I was on at different points to stop the inflammation. The endometriosis that had been sitting there undetected, possible for years, wrecking havoc with my hormonal system. For some reason, my HPA axis was indeed fried.

“I want you back in a month with all your medical reports and blood results, any by the way here’s a few more.”

Clearly the man enjoys his bed time reading.

So I walked away with a wry grin, but not because there was a possibility of another piece of the puzzle falling into place, but

because I had learnt to accept.

To accept that what could have been, should have been.

And to accept that this is where I need to be.

Hanging upside down with no control stick.

Knowing I can’t guarantee the plans I make – my body evaluates this daily, and even hourly.

But the flip side is that I’m in a more peaceful state.

In a less critical mode.

In a more forgiving space.

I have learnt that it isn’t necessary to forgive and forget, but to simply accept.

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Let’s get ready to rumble

I’ve been a bit quiet on the writing front.

Despite the fact that I schedule 1.5 hr every week to ramble, edit, find a good pic and publish, my unexpected and sometimes tumultuous life just gets in the way.

I also do a lot of marinating (and perhaps procrastinating).

What I’ve read. How I’m feeling. The latest blood test results. What the naturopath is suggesting. What the latest science journal says. What the latest podcast proposes.

The next holiday. The next bike ride. Will I ever be able to do more than 20 mins a day? Will I ever enjoy the freedom of hiking faraway trails, pitching a tent and for a moment, just be there…in that space.

Boxing girl_Canstock

And then I have to remind myself to stop the nostalgia shit. It’s not helpful.

Today is different. From yesterday. From last month. From last year. From August 27, 2012.

My ever-evolving auto-immune world, continues to spin on its merry axis. It would be nice to know where to next though.

Confirmation that I have HPA axis dysfunction, bordering on Addison’s disease. Yet more labels. More tests. More peeing in funnels.

I’ve basically fried my brain’s circuit board that controls the messages to my body to manage hormones. In its crudest term the 4 S’s are completely out of whack – sugar, salt, sex and stress.

Was it all the steroids I was given to control the severe bouts of inflammation or was it the enormous stress driven by the need to achieve, perfect and be seen?

Was it the perpetual flight/fight response turned on early in my childhood? Was it because I never felt safe, until my mid-30s, to put down the armour?

It doesn’t really matter, but it does explain some basic physiology and the development of dis-ease. No testosterone, too much progesterone, a spluttering and spurting thyroid, layers of endometriosis and simply not enough cortisol.

What a relief!

No more beating myself up over that second soy latte at 3pm, which can be bad for most people, let alone those with various auto-immune disease.

My body simply doesn’t create enough get-up-and-go over the course of the day, so right now I’ll keep investing in my local coffee haunt, which Franki doesn’t seem to mind either.

It also explains that when I push that little bit more, don’t give myself enough rest over the course of the day, run from one thing to another (99% of the time in my head), or have a crap night’s sleep, I can guarantee I’ll wake up to aching hands, grinding knees and an overall feeling of heaviness. There are days where I can even feel the weight of my eyelids and every single blink.

On those days, it’s simply a case of cause and effect – I’m spending pennies I don’t have. And then I remind myself.

This makes sense.

Because the most frustrating part of the last 2.5 years hasn’t been the multiple diagnoses, the furrowed brows, the experimental drugs, the grinding pain, the overwhelming fatigue, a life that has changed.

The frustration was that it simply did not make sense.

I couldn’t see a pattern. I couldn’t manage my day. I was fighting wildly, valiantly…but blind.

It’s a slow, painful and frustrating experience (call it journey if you’d like).

It requires patience I didn’t know I had. And patience I didn’t think I could muster. But then I heard the definition of patience from a 4 year-old, “Patience…wait & whinge.”

Yes, I’ve spent a lot of time waiting and even more time whinging. Because sometimes you’re waiting for the light to turn on, for a chance to put on the gloves, prepare yourself, so the fight is fair.

Upfront, in your face, visible.

But most of the time it’s not.

So I guess I’ll just need to learn to swing, duck and brace at the right times. And if I can’t see, and I don’t know where to aim, I’ll need to learn to feel and to sense.

Perhaps even trust myself. The innate. The gut feeling, once again.

And when I go down…at least I’ve already learnt how to get back up.