Tag Archives: lupus

Let’s get ready to rumble

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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.

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In my Head

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I spend a lot of time in my head.

Observing, synthesising, debating and concluding. All by myself. All in my head.

I’ve always done it. I don’t know how not to do it.

I put it down to being an only child, where there was no one else to share my thoughts, or the scenarios and debates I created in my head. My parents were hard working migrants, trying to put food on the table and provide their first and only born with the education and opportunity to achieve and succeed.

I’m sure as a creative child, those thoughts would have been fanciful and self-deluded. After all, there was no one to point out the flaw in my plan for schoolyard domination. I developed resilience via a steep learning curve.

Adolescence did not change my modus operandi, particularly as my parents went through an ugly divorce in my pre-teen years. The arguments, the late night whispering and the removal of my dad’s clothing into 40L plastic bags were all observed, recorded and filed away…for future reference.

My young brain recorded that trust and intimate relationships are fraught with danger.

Now as an adult, happily ensconced in an intimate relationship that looks nothing like my parents’ or anything else I had witnessed or imagined, I still find myself spending quite some time in my head.

Observing, synthesising, debating and concluding.

And in dealing with undefined auto-immune dis-eases, I find that I spend more time retreating, in my head, wondering how did it all go so wrong? What can I do to stop it, reverse it, halt its progress?

I’ve spent many hours googling down the rabbit warren, coming back more overwhelmed than clear. I’ve read books on neuro-plasticity finishing them with great hope that my brain can repair itself from the chronic fatigue short circuit and my short term memory will return.

I’ve scoured the latest journal articles on lupus research and the effectiveness of rituximab and the latest in immuno-suppressants. Hoping that pharmaceutical companies will add another drug option to the market, given that it’s been over 40 years since the last dedicated lupus drug.

I’ve struggled to find any information that could explain the importance of testosterone for females, and why my pituary gland is malfunctioning, without having to enrol in a degree in medicine. Although I suspect I have the first year of theory covered.

I even had my hopes raised when ABC’s Catalyst program, did a story on testosterone, but it was short lived as they chose to focus on middle aged men and menopausing woman. Because it appears that the sex lives of baby boomers, deserves more research and funding than those living with auto-immune disease.

I’ve fallen in and out of love with meditation, struggling to find a routine, a niche, a regular space in my day. Started drinking kefir daily, and once I got past the tangy and surprising effervescence of my coconut milk, my gut started to thank me immediately.

My yoga practice ebbed and flowed, largely due to the instability of my spine as the arthritis of my sacro-illiac joint decided to stand front and centre in 2014.

It started as a niggle, but ended with another red flag on my littered path.

The pain in the dimple of my left glute, my left knee giving way as I walk Franki to the café or try to manage the 45 stairs to freedom. The tingling in my left heel, the numbness in my hamstring.

Of the three episodes I’ve experienced in the second half of the year, I seem unable to acknowledge the symptoms until my back spasms, my hip locks and I can no longer turn my neck or lift my arm. Then the desperate call to the physio. As I’ve said before…I can be a slow learner.

And then the humility kicks in and I need to exit my head.

I ask my husband to wash my hair. I ask friends to walk a little slower. I ask Franki not to stop and sniff at every lamp post, perhaps every third one instead.

I tell my yoga teacher it’s a non-pretzel day, I can only do a 30 minute session and ask “can we do some breathing and meditation to complete the hour?”

And I ask strangers to help me untie Franki from the café chair leg as the Fisio-taped back and shoulders make my movements laboured as if my life has been catapulted into slow motion.

It’s those moments where I realise I can’t spend all that time in my head. That in fact, my life can be made easier by just opening the doors and sharing, asking and letting go.

Yes, 2014 has been a challenge. Not because my prognosis has become any worse, and not because the treatments have been wholly unsuccessful. Like everything in life, it has its success and its shortfalls.

I’ve experimented, struggled, rejigged and reworked.

Always in my head. But slowly, with others.

And with only hours left in 2014, I can only hope that I can approach the next 365 days with a little less “in my head” and a little more “in the marinating bowl” with others.

I’ll share my puzzle pieces, and ask for a different perspective. I’ll try them again, this time in a different place or space, sometimes by myself but also with others.

And I’ll remind myself that just as my parents tried valiantly, so will I.

Because life doesn’t always play out the way it does in your head.

Turn Off & Tune In

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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.

The Accidental Investigator

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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.