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.
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.
I think it’s only fair that when a doctor diagnoses you with an auto-immune disease, and they send you out the door with a prescription for medications, further blood tests, CAT scans and ultrasounds, and a reassuring smile they should also provide you with a prescription for the following:
For those who are unfamiliar with the juggernaut that A.I is, I’ve written about my rollercoaster here, but let me try to provide a glimpse of that moment in time when A.I. is confirmed.
You’ve been sitting uncomfortably in the waiting room fidgeting, pretending to be interested in the latest Kardashians saga on the cover of Who magazine, whilst simultaneously hoping someone will want to play Words with Friends.
But the reality is you’re just waiting for your name to be called, and you pop your head up every time you hear the docs shoes approach the hallway…and then someone else steps up. Another sigh. Another 15 minutes.
And then, it’s time. The moment you’ve been waiting for, followed by the split moment where you’re hoping you can make a quick stage left exit.
You’re not meant to be here anyway. You’re over reacting. Your nan said you were a hypochondriac, it runs in the family.
But you follow the doc. Formalities are exchanged. You take a seat. You wait for a smile, it’s tortured, so you quickly try to put one on.
And then it comes.
The silence. The deafening silence.
Yet you can see the docs lips move. And the panic sets in, “I must be deaf! I can feel the blood rushing to my ears.”
But you’re not deaf. Nor are your ears burning. You’re in shock. And your brain is a powerful computer that is carefully selecting what you process.
I’ve mentioned it before, because of its many manifestations and a lack of funding and research, diagnosis of any A.I. disease, brings much more than just shock and confusion for a patient, it also brings much shock, confusion and helplessness for medical professionals.
They’re hoping you’re one of the text book cases. Responsive to pharmaceuticals. They know there will be an adjustment period. Where your body goes into shock as it gets hit by very powerful drugs. And they know you will experience some horrific days and question whether they know what they’re doing at all.
But they’re confident, to a certain degree. Until it starts to get complex. Until you don’t start to respond to text book therapy model. Until the doc says to you, “I’m increasingly seeing more cases where the standard recipe doesn’t work. I’m not sure what to do next.”
This is the moment where the A.I diagnosis hits you. And the prescription is in your hands. This is where you’ll need to dig into your bag of tricks.
Do you remember asking where strawberry milk comes from?
Because you know that chocolate milk clearly comes from brown cows.
Do you remember asking why a dog chases a cat?
Do you remember asking how can the sun warm up the earth, when it’s so little, compared to your beach ball?
And is it true that a turd-burger tastes like the best banana split you’ve ever dreamed of? Just like your brother told you?
Remember those traits? The ones that were probably beaten out of you in the corporate world. Pull those out, dust them off and don’t be scared.
Question the docs, the specialists, the Professors, the very educated men and women, with their multiple certificates hung proudly on the wall behind them. This is your first line of defence and support.
I’ve struggled with this, and I still do. I may read a journal article and think, finally an answer. And I’ll go into the docs office, with my notebook lined up to ask questions.
And then my courage wanes. I see all those certificates lined up. Somehow it just doesn’t sit right. I feel sheepish. Like I’m being the smart arse in class. Giggling and mocking from the back row. Challenging and hiding behind the class clown.
Sometimes I can shake the doubt and I ask about a research article I found and ask whether there is any further research in the influence that hormones play in A.I? And in my case, whether my non-existent rates of testosterone may be due to high metabolism found in women with lupus? Testosterone, a building block for energy, mood and muscle building. All which I have seen waste away.
And often the response is greeted with, “Yes, it’s a theory. But we have no idea how to reverse it.”
It’s a minefield. And one often fraught with frustration, desperation and plenty of tears. Off one merry go-round and onto another.
But what I try desperately to hold onto is motivation. Motivation to accept the challenge of the accidental investigator and to share my findings with my defence team.
On good days, I go down the google rabbit hole hoping I’ll pop up the other end and it’s still daylight. On a lucky day, I may even find a carrot. And add to my fibre content for the day.
It’s never a complete loss and I’ll always wonder about that turd burger.
When I first decided to publish this blog, I took a friend’s advice, “Just hit publish” she said, “ Who knows if anyone will read it anyway?”
I had purchased the domain name almost 12 months earlier. I had no doubt. Emotionally constipated. Who hoo that’s me…it’s in the stars!
The title was never in doubt, it was usually my opening line at a speed dating event and was often received with a chuckle, and I’m sure some scepticism. But I prided myself in being honest…you won’t get dolphin tattoos and hand holding from me. I’m just not built that way. That warm and fuzzy stuff makes me uncomfortable. And of course, there’s a story there to share…just not quite now.
I had written (posts), generally in fits of inspiration (and desperation). Several at one time, and then nothing for weeks. The writing came easily to me, I was 9 again, and loving it.
For 12 months it became my private place to share (with no one other than myself) my frustration and ramblings, the ridiculous and the comforting. And surprisingly it provided a place to find some peace and equilibrium;
because when it all stays in my head, the incessant chatter is overwhelming and nothing makes sense
I had no plan on my approach. Whether to be completely objective sharing the latest in scientific research into Chronic Fatigue, Fibromyalgia or Lupus, or whether I would be uber-positive and annoyingly optimistic (unlike me) trying to convince myself or others that life with a chronic disease can be rich and fulfilling. I’m still struggling with that one.
I didn’t plan to share my deepest and darkest days, because I was (and still am) afraid if I actually admit to it, and feel the pain in its fullest and most terrifying grandeur, that it will envelop me and I’m afraid I won’t be able to find a way to get up and into enough air, let alone find the strength to get out of it.
I just planned on being…I don’t know…just plain old honest. And ultimately, much to my surprise and dismay, vulnerable.
An emotion I had been keeping well-guarded for most of my life.
And in the moments of doubt, sprinkled with troll-associated terror, I kept reminding myself “who knows if anyone will read it anyway?”
So I hit publish. Privately. Quietly. Sharing only with those closest to me. Scared to death that they would think it was boring, unengaging or even worse “I’ve heard this all before.”
And out they go. One at a time. As the tightness in my throat clenches hard and the pain in my chest rises until I feel like I’m going to choke or hurl; every time I hit publish.
And then it comes. Like clockwork.
Texts. Phone Calls. Tears.
Emails. Likes. Joy.
Comments. Engagement. Relief.
From people I know and most surprisingly from those I don’t.
It’s a rollercoaster of feelings I don’t quite understand. A mix of terror and sublime bliss. Trepidation and exultation. And it all happens out there, within moments, completely out of my control.
My writing is a little more stable now. There are no fits of inspiration, I notice a story in almost every interaction I have. It’s just the courage to jump on that rollercoaster which still terrifies me.
And I realise that this funny little thing called life is rather persistent, forever trying to remind me to slow down, to observe, to share and to enjoy.
So as I take my morning walk with Franki, as I sit at yet another doctor’s office, and as I struggle with a downward dog, some days more than others, I remind myself to step back. Store the memory. Feel the anxiety and the fear.
Let it marinate, but don’t let it stew.
And when I’m ready, bring it back and toss it around like a good Greek salad and write. And in time, find the courage to publish.
So thank you for indulging me and sharing in my exploration.
Without your likes, your comments, your high-fives…my search for a daily scoop of fibre, comes much easier than I ever thought possible.