Grab yourself a cuppa and a (healthy) bickie, it’s quite the saga…
Not long after a Hike in the Malaysian Jungle, 2014, I started to feel unwell. I never looked sick but I felt not quite right, I went off my food (OMG that’s alarm bells, a Foodie/Chef can’t eat, THAT’S SERIOUS) I had a blood test and my liver was freaking out, all my enzymes that should have been under 30 in the reference range were around 6000 and my ferritin which is stored iron but also an acute phase inflammatory marker shot up to 8000 instead of being around 120. I looked so well because what I had assumed was a gorgeous olive tan from my hiking outdoors was actually jaundice, I was just one of the few people that didn’t have yellow in the eyes.
Straight into hospital, initially in isolation with staff in gloves and masks until I was cleared of all infectious diseases. I was having so many blood tests they just left a port in my hand. Daily Clexane injections, as my liver was throwing out my clotting times, I had so many bruises from the injections that I looked like an angry horse had kicked me multiple times in the tummy.
I still remember the day that the specialist came in stood at the foot of my bed and said “we are not sure what’s really going on, but this kind of weird stuff is usually autoimmune. Let’s start you on Methotrexate”
“But what autoimmune disease” I said “If my liver is failing, I don’t want to take medication that has to be metabolized through the liver, especially if we don’t know what disease it is”
“That’s fine” he said, with a grim smile, “if you don’t start Methotrexate you will either die or very soon need a liver transplant”
WOW! That was a shock, I ended up going home without the Methotrexate. Fast forward 6 months I was up and running but in a fair bit of pain. I had managed to get my liver almost back into range, but it would spike no matter what I did. The ferritin started to come down, I was doing weekly IV therapy challenging the iron with Vitamin C and Zinc. But some days I would be in so much pain it would take me half an hour to put my feet on the ground when I got out of bed. I can tend to err on the stoic side and looking back the pain was intense and unrelenting. I finally found the right specialist who diagnosed me with Adult Onset Stills Disease and Psoriatic Arthritis, I did high dose prednisolone for 6 months and the AIP diet strictly for 9 months.
Now I am medication free but not pain free.
All my blood tests look fantastic and any test I run on myself like SIBO, Hair mineral, Hormonal assay etc. are boringly normal (Yay!)
But the pain still remained, a bit of a mystery until a recent MRI has found bulging discs in my neck with 2 of the discs digging anteriorly into my spinal cord and damage to the entire cervical spine. Seems I did not get away with the whiplash I had in my late teens. (And no it wasn’t a car accident, don’t laugh, but I gave myself whiplash in the mosh pit of the Beastie Boys in the early 90’s. You’re laughing aren’t you) the damage is also impinging on nerves, the theory is that the autoimmune inflammatory storm hastened the progress of decline. My Autoimmune diseases are pretty much in remission, but the pain from the spinal cord knocks me around a bit and gives me a huge amount of migraines. 25 per month at its worst but dropping dramatically with treatment and herbs. But, onwards and upwards as they say, and at least I now know why my arms go numb when I do intensive yoga or try and lift weights.
I’m currently doing a massive rehab programme to control the chronic pain, and try and reverse the degeneration in my neck I believe is something degenerates, it can regenerate, it just needs the right conditions and bucket loads of perseverance and time.
BTW I strongly want to point out that I am not hugely anti-medication. I chose not to go down that road personally but then I am a health practitioner and I could very much monitor my own health and adjust accordingly. Bottom line is some health conditions need the big guns for intervention, and in fact I did do steroids for a while.
Pick what works for you, have a team of professionals, friends and family to support and advocate for you.
Hugely importantly follow an anti-inflammatory diet, keep moving, get outside into nature and fresh air and try to foster a positive mind set. Never Give Up! Even with challenges life is Wonderful