Wile Coyote & Me

For those who don’t know me, I’m an all-or-nothing person.

I give 110% or I give nothing at all. Mediocrity isn’t my thing, in my mind, if you’re able to do something, do it properly; it’s unfair to not give you’re everything.

Who doesn’t remember Wild E Coyote ‘s dedication? Plotting each and every trap for Roadrunner? As a child I was in awe. The mix of braveness and stupidity in all its glory!

Courtest of Moby Picture
Courtest of Moby Picture

But the lesson I took is if it doesn’t work – try and try again.

This might explain why after almost two years on various auto-immune drugs I decided enough. Let’s go drug free and see what happens. Read: the doctors have it wrong.

That explains how I managed to get back on a bike and cycle 200kms in three days, 9 months after my disastrous freefall into AI hell. Read: I think I’ve beat this now. Lesson learned…thank you. Let me get back to my life.

And that also explains why I think (and maybe still believe) that the only why I am going to be able to reclaim my life is to keep pushing the wheelbarrow…uphill….by myself. Read: the doctors have no idea and I’ve got to work this out myself.

The last month has seen an increasing level of bone grinding joint pain and hot-coal walking nerve pain. By the end of the days my hands ache so much it’s hard to hold the toothbrush.

I spend most of my day trying to find creative places to shove my feet, to keep them cool. And more creative ways, a la MacGyver, to deliver me efficiently and effectively from the 3rd floor living to terra firma, minus the 45 stairs.

I spend 10 minutes every morning reminding myself that no matter how much my knees, shoulders or hands hurt, things will be better once I’m out of bed.

After all, I will be showered by a plethora of Franki kisses. And kisses from Mr Metamucil, if he hasn’t already left for work.

Last Friday, I woke up to my neck seizing and an electrical charge flying up and down the right side of my spinal column. I felt like Wile E Coyote, so excited that he has found the power source, but forgetting to let go.

I hobbled to the physiotherapist with tears streaming down my face… “please make this stop.”

My physio asked what type of pain I was experiencing and how I would rate the pain. Was I still drug free? Now it was her turn to plead, “please go back on the drugs”.

So as I lay on the table, wiping away tears with one hand and trying to keep my shoulder up with the other, I asked, “why is it that my shoulders are so weak?”

And she explained, “you’ve lost your structural strength and being in pain exacerbates this.”

Because it is appears that when the brain has been registering pain for an extended period, collagen which is a protein critical and basic building block that facilitates tendon, ligament and muscle strength can no longer do its job properly.

Researchers have shown that in a chronic pain patient the amount of collagen produced decreases, and of the 19 different types of collagen required the ratio of collagen rebuilding is off-kilter. But the dysfunction continues as the parallel structure which tendons and ligaments align themselves is disturbed and microtears and fibre separations are commonly seen in MRI’s.

It appears in my gung-ho, “I can manage this illness without drugs” approach, what I failed to realise that the creeping pain in my body isn’t the beginning of a bad turn, in fact at a molecular level it’s clear, the bad turn is approaching the end of a cliff.

by FabulousESPG
by FabulousESPG

I haven’t been able to manage the pain messages through mindfulness or meditation. I believe it can work. I have experienced the benefit. The relief.

But that was when my body was still receiving some synthetic assistance. The synthetic assistance I thought I could do without.

It appears, I’m simply not ready yet.

Part of me was hoping that the past 24 months had been one hell of a bad dream and an over-reaction by not only myself but also by the doctors.

Part of me was hoping that I could cure myself by understanding and eating “real food”, being mindful, exercising within reason, getting good sleep and listening to my body.

I’m not proclaiming this is a cure for A.I., but I do believe this has the ability to help heal not only my body, but my mind. And I suspect it is my mind that tortures me more than my body.

But it appears I’m still a little off that nirvana as well.

Intellectually, and deep down, I believe that I can create a healthy and wholesome existence, despite the A.I. honour roll and minus the synthetic assistance.

But I think I got a little cocky. I thought I could see the finish line. I started to take short cuts. And I cheated myself.

And I should know by now…you can’t cheat with A.I. and there’s nowhere to hide.

So at 4pm last Friday, I walked into my GP’s office and placed my white flag on the table and asked, “can we start again please?”

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The Illusion

When given the choice, I always take bad news first, hoping that the good news will wash over and overwhelm the bad.

But what should you do when the bad far outweighs the good? Perhaps I should reconsider my approach?

Let me take you & I, back for a minute.

It’s been six weeks since my last blog, a big no-no in the blogging world. Apparently your readers want to hear what you have to say, and want to hear it often. I’ve always maintained the personal rule, that unless I have something useful, interesting or helpful to say…keep it to yourself.

Those are Dear Diary entries, not reflections I want posted to the world wide web. After all, I am emotionally constipated.

I’m still finding the balance between vulnerability and verbal diarrhoea.

Six weeks ago, I wrote about the testosterone treatment I has started taking in March. After almost two years on the autoimmune medical rollercoaster, I was starting to experience a significant change in my energy levels and re-engaging in activities I had long ceased and at a frequency that had escaped me for just as long. I had developed hope.

After a third set of blood work in early July, my testosterone levels were steadily climbing.  And the doc suggested we kick up the dosage by 50%, just to keep the momentum going. I was accelerating on my continuum of hope.

Brunette & Balloons canstockphoto

Just over a month ago, I celebrated my birthday. And I love birthdays! It’s the only day where you can pat yourself on the back for completing the most harrowing journey ever, the passage down the birth canal (sorry C-section babies!).

After all, at 37 King Henry III of France was assassinated, Michael Hutchence, the lead singer of INXS was found dead in a hotel room in Sydney, Vincent Van Gogh was found with a gunshot to his chest and Lou Gehrig died from an autoimmune disease known as ALS or Motor Neurone Disease.

It is infamous company, but clearly I wasn’t doing so bad.

Within days of my birthday, I received a call from a friend, fresh from her honeymoon. I knew instantly the phone call at 8:30 on a Sunday morning would not be good. She had been nursing her partner and husband of 15 days through motor neurone disease for the past three years.

She called to say that he passed away. On the last day of their honeymoon.

A week later we said our final goodbyes to a gentle man who deserved to enjoy much more of his married life. Of life in general.

I was faced with the strange juxtaposition of watching my girlfriend flanked by her maid of honour and bridesmaid, as she walked down the aisle, except this time to her husband’s casket.

Overwhelmed by the cruel irony of life’s highs and lows, in such a short and swift period….it was heartbreaking.

Three weeks ago, I was woken up by crushing pain in my shoulders, reinforced to me every time I rolled onto either side, as I desperately sought my “sleep” position.

I skipped yoga that week.

The following week, I could no longer ignore the shoulder pain and started taking a painkiller before I went to sleep. I’ve worked out that without restful and rejuvenating sleep, I’m unable to operate and any pain I am experiencing is amplified.

No yoga and no spin class that week.

By early September, it wasn’t the shoulder pain that had sent my neurotransmitters into overdrive, my old friend Tonya Harding was back. Swinging at my knees with that police baton. And laying on my back became increasingly painful as I felt my kneecaps sink into the back of my legs.

I checked in with my chiro wondering whether he could help stabilise my knee. Had I accidentally hyper extended at yoga or twisted it funny? I am 37 after all.

After some examination he noted that my quad muscles were no longer activating as quickly as they should. Nor were they bracing to support my body weight or knees.

I skipped Pilates that week.

Chick in flight_canstockphoto

My continuum of hope, had taken a sharp u-turn, in the wrong direction.

Today, I returned to the endocrinologist to review my testosterone count.

How do you feel, he asked? Should I tell him the truth or should I lie?

“Well, I definitely felt better with the most recent increase in the transdermal cream, but I’ve since rediscovered the joint pain, I struggle to open the jars and use the can opener and the fatigue is creeping back.”

“Well, your testosterone count is finally at the ‘normal’ range. From that perspective we’ve been able to address the hormonal issue. But clearly you have autoimmune pathology presenting.”

Yes, I do.

A few hours later I still feel numb. Like when you find out that the tooth fairy isn’t real or your football team loses in the dying seconds. It’s the realisation that the illusion I held onto, appears to be gone.

So I’ve decided the next time I flip a coin, I’ll always choose bad news first.

Because you see, the good news was that “I’m normal,” so surely it’s only upwards from there?

Turn Off & Tune In

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.

Testosterone test - Feb 14
Black & White, but an asterisk usually spells problems testosterone level in Feb 14

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.”

Butterfly light

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).
It's been a while since the swim bag
Franki inspecting the bio-degrading bag in my swim bag!

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.

My Confession…I’m a Crier

I make no apologies for the following confession – I am a crier.

Not a sniffler, or a quick tear up, run down and wipe away. But when I’m stressed, frustrated, elated or over joyed, my one and only emotional output is tears…and lots of them.

It makes absolutely no sense, but it appears to be the only arsenal I have in my emotional toolkit, whether I’m happy or sad… let me explain.

Depending on what article you read, or Google, as humans we experience 4 distinct emotions – happy, sad, afraid/surprised, angry/disgusted. That’s it.

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!

Banksy, copyright Getty
Banksy, copyright Getty

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.

The Accidental Investigator

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:

Inquisitive mind. Ultimate skeptic. Fastidious researcher. Keen debater.

Boy & stethoscope

And not afraid of dark alleys & u-turns.

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.

What bag?

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.