I’ve learned a major lesson over the past 5 months – one that I feel is too important not to share.

You may remember that I had a liver biopsy in January and experienced internal bleeding – catch up here. Despite the pain, uncomfortable recovery period and anaesthetic side effects, it thankfully showed me the results I wanted (a real life example of autoimmunity in remission) .

However about 10 times over the past 5 months I’ve had these recurrent episodes (always occurring at night) of mind-blowing, unbearable, nothing-on-this-earth-relieves-the-suffering, 11/10 pain (in my right shoulder tip, blade, towards the spine and around the upper right abdomen) accompanied by projectile vomiting until nothing but bile is left (and even then I’ve still been heaving … talk about unpleasant pheasants). It lasts for 4-7 hours each time and has been bad enough that we’ve (mum and I) ended up in emergency twice (of course, by the time the ER doctor saw me after waiting for several hours, the pain had subsided dramatically and the vomiting has stopped).

At first we put it down to more internal bleeding. After a month or so though, we figured that it surely couldn’t still be that (everything would’ve healed right?) and so continued to search for answers. Next diagnosis … it was “just muscular”. Being a student, I do have tight shoulders … that’s what taking notes and writing essays does to you hey? My doctor just suggested cutting down on my subject load next semester or quitting my job as a bakery assistant (which involves lots of repetitive movements and use of my right arm/shoulder). I’d considered both options but figured, I’m young, I’m healthy, I should be able to study and hold down a job … there’s got to be a better answer.

For the next few months I just treated it as muscular; using extra magnesium oil on my back at night, getting regular massages at the chiropractor, weekly chiropractic work, extra yoga, less study (and on and on the lifestyle modifications went – none have done any harm mind you, winks). However after my last “attack” I was just like “that’s it, I’ve had enough of it’s just muscular!“. The pain is far too intense and unlike anything else I’ve ever experienced in my life (this coming from a girl that didn’t go to the hospital when she sprained her ankle, or got her legs caught under a boat (long story) and endured a deep cut on the knee – which probably needed stitches (whoops), or even when she got second degree burns to her stomach to the point of blistering and wound weeping – aloe vera and coconut oil cleared me up just fine. I didn’t even take analgesic for my internal bleeding post-surgery. Long story short I’ve got a very high pain threshold … and even I couldn’t handle this level of discomfort!!!).

I sat in my GP’s office and basically said “I’m confused, I don’t reckon this is just muscular, could I please have some tests run?”. She was skeptical … so convinced that it was just muscular but considering my history of autoimmune disease, agreed to a liver function test. I wasn’t really sure what that would show, but was happy that finally (5 months later) I might be on my way to getting some answers.

Well guess what? My liver enzymes (AST and ALT) were slightly elevated (171 and 229 – as a reference they should be between 10-35 and 5-30 respectively!!!). This prompted an appointment with my specialist (a gastroenterologist at the RAH – Royal Adelaide Hospital for the non-locals) who basically said that my autoimmune disease had come back and I’d need to go back onto steroids and immune suppressants IMMEDIATELY!!!

To say I went numb inside was an understatement (but this is where the story gets interesting … in case you’ve been falling asleep up until this point).

Medications and I aren’t the best of bed fellows (think hives, depression, anxiety, constipation, suicidal thoughts, digestive distress etc.) and the idea of going backwards made me feel revolting, disappointed and desperate to disprove the results of this one (just one!) blood test. As much as I could in my state of shock, I asked if there was anything else we could do to be sure before I agreed to any type of intervention. There was this voice inside going “it was one test, you need more information Rach”. Also having lived through a point where only 2% of my liver was actually functioning, I can tell you I never had intense pain or vomiting even then – things just weren’t adding up.

My specialist, refuted all the differential diagnosis I brought up; could my growth hormones be elevated (?), could it be my gallbladder(?), maybe the surgeon that did my liver biopsy hit a muscle near the liver (???). I told him that I really did respect his professional opinion and clinical experience, but I just had a feeling that it wasn’t my liver. He looked at me sympathetically, told me not to feel too bad – only 40% of people with my condition manage to stay off medication for 2 years and then only 20% for 5 years – and wrote the scripts and urged me to get them filled within the week.

Now without sounding arrogant the first thing that came into my head was this … “yeah but I’m not a statistic! Were those 40 and 20% (respectively) of people eating clean, getting enough sleep, living a low-chemical lifestyle, exercising daily, using essential oils and overall feeling happy and enjoying loving social connections??? If 40% of people on the SAD diet, with a (I’m going to assume) sedentary lifestyle and little to zero knowledge on the effects chemicals have on the liver (and every other cell in the body mind you) can go at least 2 years without medication, SURELY I can!!!

However this inner fighting spirit wasn’t without it’s doubts. That appointment rattled me to my core and I got out of the liver disease outpatients rooms and absolutely lost it. I sobbed uncontrollably all the way down 7 flights of stairs, all on my walk down North Terrace back towards the train station, on the train on the way home (to the point where this kind lady offered to sit with me and talk – I politely refused but was humbled at the generosity of her offer and this act of kindness did offer me some comfort and I managed to get my tears under control).

I got off the train one stop early and used the walk home to clear my head. When I got home I just sat and talked to the angels (which I know sounds a bit naff, but when all else fails my spirituality comforts me and helps me stay positive). I also gave myself an angel card reading where (and I’m not even kidding or making this up for ‘effect’) I pulled the card “alternative medicine” (where the message is that conventional treatment may be counterproductive and to keep investigating). Just to be sure I placed the card back in the deck and reshuffled. I pulled that card again (twice, the skeptic in me said “coincidence perhaps?”). Back in deck, reshuffled … same card … I think the message was loud and clear.

So I did what I’d tried to avoid doing … Dr Google. I know how easy it is to get carried away and mis-diagnose yourself on the internet  (hey guys, remember that time I was convinced I had parasites … of course you do!!! I digress, now let’s leave that in the past and move on). Within 10 minutes I realised that I had every single symptom of gall stones (just google “gall stone symptoms” and you’ll put two and two together).

I might add that this was in the middle of exams and I really just wanted to run away from thinking about health and just focus on memorizing things like the Kreb’s Cycle and the mechanism of action specific to lipid-lowering drugs (as you do when you’ve got nutritional biochemistry and pharmacology exams on the brain). But I knew that it was important that I go back to the GP and request a gall bladder ultrasound.

Mum came with me (for reinforcement, considering that most other requests for further investigation had been shut down) and as expected we were met with resistance (and scare tactics … “every second you aren’t back on the medication your liver cells are dying!”). I just kept repeating that I had a gut feeling that it wasn’t my liver, that maybe medications weren’t the answer in this instance and that I needed to keep investigating to rule out other possibilities. I think in the end she only weakened because we weren’t backing down (Mamma bear and baby bear make a dynamic team). She wrote an ultrasound form (emphasising that it was $220 upfront and “probably a waste of money”) and more blood tests.

By the way – funny story in a story here – I was very rattled again after that appointment (the people-pleaser in me hates conflict and the conditioned skeptic in me was starting to doubt my resolve) so I did another card reading … almost as a joke with the angels like “go on, give me that alternative medicine card again if things really are going to be okay”. Well guess what card I pulled at random? Yep … my angels were sending me a strong message and also having a good chuckle along with me as I giggled a giggle of restored faith.

Fast forward to Friday at the ultrasound. I had a friendly technician and we got to talking about why I was there. I told her about my unanswered pain, liver biopsy, vomiting and how the doctors though my autoimmune disease was back but I just wasn’t so sure. Towards the end I asked “Can you actually see any pathologies just by looking at the screen, or does it have to be analysed by the specialist doctor? “Well …” she replied “I’m not the one in charge but I reckon it is your  gall bladder”. She got me to sit up and she showed me the gall stones. Well I never, I may be the first person in the history of the world to be grateful for gall stones … I mean they aren’t autoimmune hepatitis so #gratitudejournalmoment!!!)

That afternoon I had my follow up appointment with the GP. She was absolutely gob-smacked (and not a little peeved that she was wrong … probably happy on some level that I wasn’t as sick as she’d thought, but uncomfortable in her position  nonetheless). Not to be smug, (but to be smug) it took all my politeness not to say “if I had listened to you and my gastroenterologist, not only would I not know that I’d been having gall bladder attacks all this time, but I’d also be taking expensive medication that destroys all my immune cells … how great coming into winter and all!”). Also my liver functions tests; AST down to 34 and ALT down to 31. Believe me, if my autoimmune disease was truly back those numbers would’ve been worse and not better. So yes, as polite and kind as mum and I were in that appointment (do they give medals out for acting humble and hiding smugness?), inside we were bursting with smug, told-you-so, intuition-1, doctors- 0, pride, relief and happiness.

The point of this lengthy, detailed, happy-ending (well not “ending”, but I’ll leave the recount here and update you later) story is this: if you have a major gut feeling about something or if something you’re being told just doesn’t feel “right” then PLEASE … don’t just brush it off … trust yourself and back yourself. There could have been a very unhappy, counterproductive, bad news outcome to this situation if my intuition hadn’t shown up on time.

I’m not trying to have a dig at doctors I promise (and I’m certainly not anti-medicine) but if this isn’t a lesson that even some of the most experienced and intelligent among us get it wrong sometimes, then I honestly don’t know what is. It’s normal to ‘just trust the expert’, to figure ‘what would I know?’. Well lovely one, no matter the situation or the ‘experts’ involved, I hope this personal anecdote can act as a friendly reminder to stand strong in your personal power.

You always have a voice, you can always get a second opinion and it doesn’t make you ‘hippy’ or a ‘know-all’ to go against the grain. So next time you have a gut feeling … about anything … trust and act accordingly … it might just save your life (literally).

Yours in advocating intuitive decision making (and in deep gratitude that you’ve stuck with this post to its end),

Biggest hugs as always,

Rachie xxx