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.
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?
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.
For some people it’s the expanse of the ocean, for others it’s the grandeur of the mountains. I can imagine the romance of the red open plains or the enveloping of a familiar mallee scrub.
Some are lucky enough to find it in their everyday, but I still need to be “away” to find it.
I know you’ve felt it.
You capture a glimpse. In the distance. And it twinkles, just for you.
Your chest bellows, your smile erupts. Your body expands.
A place of solitude.
A place to refresh.
A place to re-ground.
Usually a place of unintended mindfulness.
A connection unexplained. A heart rate sustained.
For Mr Metamucil, it is the Snowy Mountains. The high country of the flattest, island and continent in the world.
A landscape of twisted gum trees, lazing kangaroos, curious wombats and in the summer, the most annoying bush flies you will ever encounter.
I can understand the allure. There is something untouched and untamed. Sepia-toned pictures show that not that much has changed, even in the most populated towns.
These sleepy little hamlets, crowded during a very short snow season, use the warmer months to defrost and recharge.
The picture perfect horizon, that big blue sky. Stars so bright, it looks like a blanket has been haphazardly picked at…someone has been busy.
The emerging song of the corroboree frog, the sunbaking of the alpine copperhead. The blanket of wildflowers that fill the mountaintop.
It appears that everyone, and everything, comes out to re-ground and re-fresh.
There’s an explosion of road cyclists tackling the climb out of Jindabyne on their way to Thredbo, willing their legs to make it just to the next corner, whilst mountain bikers fuel up at the breakfast buffet, before they’re off to explore the vast trails that criss-cross this untouched and vast domain.
Lake Jindabyne is a cacophony of colour. Kayakers in their brightly coloured craft, weekend sailors adjusting the sheet and wondering, “will she be kind, or will she turn?” Because in the mountains, you need to respect her, or she’ll whip your pants down, no questions asked.
The day hikers are prepped, insect repellent on hand. Backpack with the essentials. There are no selfie sticks here.
Whilst the fishermen sit patiently, listening to the wireless and wondering if Australia can really bowl India out in two sessions, and perhaps momentarily forget, why they’re out there.
And they’re not alone, because despite all the doing and the huffing and puffing, you can see it….the connection with a moment, a place.
The caravan park is full of campers and caravan-ers. We’ve arrived at our destination. Time to stretch the legs, breathe deeply and look up. What’s the frequency for the ABC here?
The shelves of the fruit and vege aisles are empty, they haven’t refilled since Christmas Eve and re-stocking only occurs weekly. The planned stir fry becomes more rice and less veges. I probably eat too many veges, anyway.
And it doesn’t seem to matter. The bushflies, the sunburn, the dirt encrusted crevices.
Because when we’re away from our comforts, our routines, our everyday… something happens.
Right there, before we know it.
That fleeting moment, whether we realise it or not.
The re-charge formula.
And even if only for a moment, we realise, life is good.
In March this year I decided to take myself off all my medication.
The Prednisone, that is meant to keep the immune war at bay, the Plaquenil, an immune-suppressant drug that helps lubricate the Nancy Kerrigan knees and the Lyrica, that is meant to turn off the burning sensation on the soles of my feet.
I wasn’t advised by my medical team and nor did I ask them. After all, it is my body. I had just spent 6 weeks detoxing from an experiment with methotrexate. Words can’t begin to describe how horrible I felt on this drug. But I had had enough.
What was truly making me sick? The A.I. conditions or the medications?
In February after a routine gynaecological exam, because clearly I hadn’t suffered enough, the gynaecologist stated he was concerned about endometriosis and felt it needed to be investigated. I was approaching the end of my “fertile years” and if childbearing was on the agenda, best to check it out.
Childbearing could not be further from my mind, after all I was still pulling chunks of my hair out of the shower drain. Childbearing was never high on the list. In fact, the thought was (and still is) rather terrifying.
I did point out that in order to have children, I would need to be physically and emotionally well enough to even enjoy practicing and as a relative newlywed I wasn’t exactly hanging from the chandeliers.
He suggested I have some blood work to check my reproductive hormones, but expected no real surprises, “you’ve got to keep in mind that your body is going through enormous stress and sometimes it just shuts off unnecessary requirements.”
No shit, Sherlock!
But those words did spark off a chain of thoughts… somewhere and at some point I did recall reading that hormonal levels are often askew during active A.I flares. And with the majority of A.I. diseases affecting women, it would make sense to check reproductive hormones.
But after 18 months of appointments with specialists across many fields, no one had bothered to check reproductive hormone levels, despite the fact that they are directly linked to energy production, mobility, muscle building and strength. The three things I was struggling with on a daily basis.
To provide a little context on why hormones are important and often overlooked, here’s the skinny, or skip ahead if you’ve heard this before.
Hormones are a naturally occurring chemical substance, triggered by the brain and released through the body by glands across our body in short bursts and pulses. They make up endocrine system. The main glands that produce hormones are the adrenal glands, pancreas, ovaries, pituitary gland, thyroid, parathyroid and testicles. Ref betterhealth.vic.gov.au/bhcv2/bhcarticles etc…
As a CFS patient, cortisol levels are one of the first things my endocrinologist tested for in addition to my thyroid levels. Not only my Thyroid Stimulating Hormone (TSH) level, but also my T3 and T4 levels. To put it simply, a TSH level is an average calculated from T3 and T4 levels, therefore if you have an imbalance in either of these levels, the TSH is likely to mask it, therefore why your results come back “normal”. If you’ve never had T3 & T4 checked insist that you do, but be prepared as Medicare will not cover it.
Check out Better Health by VIC govt for a more detailed explanation here.
So in late February at a follow-up appointment with my GP, I asked if my hormone test results had returned, as I hadn’t heard from my gyno.
And as he sat there, pouring through the numbers, looking for any red numbers to highlight an abnormality, there it was.
Undetectable levels of Testosterone. WTF??!!
How long had it been like this? What caused this? What does this mean? Could this be part of the solution?
The short answer is “it could well be.”
Like all reproductive hormones they fluctuate over the course of a menstrual cycle, so diagnosis or treatment decisions based on one reading can be misleading and potentially dangerous. But when more than one came through at undetectable levels and all my other hormones indicated I was nowhere near peri-menopause, it was clear that for some reason the pituitary gland had stopped sending messages. It had simply turned the chandelier lights off.
Treatment and access to treatment when you’re diagnosed with an androgen deficiency is a complex and hairy beast. Google androgen deficiency, and if you live in North America, Asia or South America there’s no government approved treatment for women – it appears they don’t even recognise it as a medical condition.
If you live in Australia, you will come across many more articles suggesting “there is no standard treatment” and a diagnosis “is controversial” rather than “there is a possibility that this may contribute to the symptoms associated with auto-immune presentation.”
The key is to find a progressive endocrinologist who is prepared to say “we don’t know why it happens, but there are ways to reboot the system.”
I lucked out! I figured it was time! Professor Eden is the ducks-nuts of endocrinology and women’s health. Young, smart, approachable and empathetic.
As he told me, “I’m in the business of giving people hope.”
He explained the complexity of hormone testing and in particular the complications of measuring testosterone. It simply doesn’t exist! But what he was able to do was explain that testosterone is critical for women, but it’s not the amount circulated in the body that is important, it’s the 1% that is being absorbed by body tissue that is critical to understand. This is what’s critical to restoring energy and chandelier gymnastics.
Then he grabbed a pen and a piece of” to-be-recycled” paper and scribbled down a formula, which brought back nightmares of my university statistics class, and circled SGBH – sex globule binding hormone.
A healthy woman in her reproductive years should have a reading between 6-9. I was sitting at < 0.1. Clearly room for improvement.
The plan: application of transdermal (skin) testosterone cream daily for a month, retest the SGBH and see how my body responds.
There is one pharmacy in Australia that currently provides a testosterone cream specifically designed for women, and it is only available on script. The concentrated dosage is 1% and of course, the tube is pink!
I’ve been on testosterone cream since April, increasing in dosage and concentration under the direction of Professor Eden. I’ve also been off all other medication (except for a period post-operative to confirm my gyno’s original suspicions) because I wanted to see whether any improvement in my fatigue, joint pain and mood was directly due to the hormone replacement.
I can report that in the last four weeks I have been able to:
return to a one-hour yoga class – weekly
return to a one-hour Pilates class – weekly
I got back on my road bike for 30mins, in windy conditions and didn’t blow away or blow up (once)
I survived my first 45 min spin class
And today, I returned to the pool and did slow laps with the rehab crowd (all over 50 and recovering from life’s little shocks and wake-up calls).
And last week’s blood test results showed an SGBH result of 3. Finally heading in the right direction.
Is this part of the puzzle?
I don’t know. But I’ll keep you posted.
For more info about Androgen deficiency, Monash Uni has some great info…check it out here.
Everything else we feel is biologically driven from these basic four. And depending on the list you consult, that can be up to 40+ different feelings.
Our brain is an amazing machine that filters all environmental cues and combines it with our conscious experience, influenced on any given moment by our mood, our hormones, our personality and motivation, to deliver the experience of emotion.
It’s a pretty complex range of inputs that are synthesised into a handful of outputs. Effortlessly and seamlessly.
We’ve all experienced it, the feeling, the inkling…the partner that doesn’t seem quite right today, the unusual quietness of the usually chatty barista, the smile from the parking ranger as s/he walks away from sliding another ticket under the windscreen.
And on the flip side, the palpable excitement as your birthday rolls around as you imagine you’ll awake to breakfast in bed, a stack of gifts and the incessant trill of your phone (proof that you are loved). Or the nervous tension as you lay in bed, waiting for daybreak, deciding whether to burn or bury the evidence of the latest purchase.
Within micro-moments, those environmental cues are rapidly identified, sifted and sorted and bang you experience the exploding joy in your chest (or your nether regions), or the increasing tightness in your throat as you feel you may want to puke or pass out, or in my case, complete confusion as the tightness, the joy, the exuberance spills out into… the wet stuff!
Growing up I often heard, “boys don’t cry,” “don’t be a sissy,” “what are you crying for?” So I figured tears were wrong. A sign of weakness. After all, Saint Francis of Assisi had gone blind due to all his crying!
So I inadvertently shut the tears down, or any emotion that provided an insight into how I was feeling, to the point that I often heard “I can never tell whether something is bothering you or not.” I took it as a badge of honour. And smugly assessed, “That’s right, I’m not so easy to work out, am I?”
But when life slaps you in the face, and as the stinging welt on your cheek rises, something shifts.
The shield of invincibility (read: denial) starts to crack. And it forces you to let go and lean in. And that’s where I discovered my tears.
The endless stream. The untapped reservoir. The plentiful bounty.
Psychologists believe that tears are a burst of intense emotional sensation, hence why I’ll get teary when a footballer drops to his knees as he misses the winning kick, or I’ll cry as I turn on the news and watch the cruelty of humanity in all its vivid colour and movement, or I’ll sob when I watch Mr Metamucil cross the line after a long distance triathlon – relieved, excited, overwhelmed.
But it appears that’s “normal.” I’m “normal” when I experience the emotional intensity regardless of the situation. So why do I feel there is a “right” time and a “wrong” time to cry?
Because somehow it makes sense to cry when you’ve broken your leg, but not two days later when the doctor confirms it.
Because somehow it’s okay to cry in the bathroom after the boss has called you in and closed the door behind you, but it’s not okay when he tells you you’re being made redundant.
And somehow it’s completely acceptable to cry before the cop even asks for your license, because you know there’s no way out of this one…except maybe showing remorse (insert: bawling), before you’re charged.
For most of my life, I figured I had missed the circulation guide on “when to cry.”
Because I can’t seem to control it, it just happens. And sometimes at the oddest times, like at a funeral for someone I have never met!
Or when I take Franki to the vet yet again, because her incessant scavenging has her puking at 25 minute intervals, and after each hurl she looks up, pleading with her big brown eyes, “when will this stop?”
And when I am simply overwhelmed by doctors who give me those same pleading eyes as they don’t have the heart to tell me, “I don’t know what more to do.”
And I cry… In the doctor’s office…I cry…In the public toilet…I cry…In my car…I cry.
But I’ve slowly come to realise that those tears don’t make me a sissy, and they don’t make me weak.
Those tears make me human.
And those tears won’t make me blind.
But those tears are witness to my pain and even my joy.
And that those tears are my only outlet…for now.
And the flood of tears, means I have connected. And I have found another scoop of fibre.
And that those other emotions and feelings, the ones I’ve been too afraid to let out, they’re just around the corner… waiting for their turn.
Be Gentle…there’s no need to snap the food of my hand.
Be Gentle…that little kid just wants to pat you.
Be Gentle…as the rough and tumble play escalates.
I’m sure Franki has no idea what those words mean. Perhaps it’s the intonation of my voice. An alarm that something isn’t quite right, but an indication to tone the pace, enthusiasm and excitement back (a little).
I notice that it’s not only Franki that is learning when and how to be gentle…So am I.
Be Gentle, Deborah….that email doesn’t have to be answered immediately.
Be Gentle, Deborah…it’s not a race to prove you are a strong rider.
Be Gentle, Deborah…there are no prizes for who can hold a boat pose the longest.
As the last 18 months have been trying to show me, I need to learn to be more gentle…with myself, with others.
Living with an AI ravaged bucket, means that if I keep filling the bucket with non-gentle stuff, the bucket overfills rapidly, starts rusting at its seams. It’s unable to do its job…to simply hold. All the good stuff and the bad.
It’s not easy though, and I’ve stumbled several times. When I arrived back home from my honeymoon month in France, my bucket was looked like it had been through the baggage handlers routine. Dents, nicks and gashes I hadn’t recognised. I was indignant.
How did they get there? Who is responsible for this? That’s MY bucket!
When Mr Metamucil completed his 4th Ironman triathlon, I was so happy, relieved and proud. I was also so exhausted, I could feel each bone in my body and could count each and every fibre keeping me together.
It may sound ridiculous, I wasn’t the one who completed a 3.8km swim, 180km bike ride and a 42km run…but for me the adrenalin, the anticipation and the 4:30am start kicks my AI bucket to kingdom come.
And so I have to remind myself, “Be Gentle…Deborah.”
So I pick up my bucket and try to restore it.
Slowly. Carefully. Daily.
I’m learning the fine art of bucket repair…the tools, the method, the manner in which I need to do it.
And I keep adding to it, because it’s only early days.
Because that’s my bucket and I’m here to carry it.