“They say the past always catches up with you, sooner or later. I prefer sooner, because by the time later rolls around, the past has picked up a lot of speed.”
~
Hey, Lovelies.
Well, gee, it has been an unexpected couple of weeks.
One moment I’m trucking along. Coping okay. Managing things well.
The next minute I’m in hospital. Then I’m off for more tests.
Then, based on the results of those, I’m off for more tests.
It’s hard to get in to see doctors where I live. My regular doctor takes weeks to see if you don’t already have an existing appointment. The stop-gap measure doc I saw for a persistent cough that had become noticeable and then worse while I was on vacation diagnosed my cough as reflux, and prescribed the drugs to which I had the rare Stevens-Johnson Syndrome (SJS) reaction – a severe and life-threatening immune response to a certain drugs. He wasn’t experienced with managing a patient like me, with complex health needs that fit outside the box, and he was completely dismissive of my Lyme disease as soon as I brought it up. Lyme is very controversial in Australia, and not recognised here.
I have late-stage Lyme. Diagnosed by three international labs and one in Australia – all reputable and considered gold standard globally. My Lyme status is not in dispute – unless you’re an Australian doctor. At this stage it is manageable but not curable. And truth be told I had pretty much gotten into a comfortable groove with my Lyme, and my thyroid issues. Or at least that was what I was telling myself.
But every time I get a major upset to my system (this time it was the rare adverse reaction to the new drug) my thyroid function crashes. I finally got back in to see my regular Lyme-literate doctor last week, and she did what the other doctor didn’t. She listened to my chest and sent me for X-rays. Which turned into multiple other scans and biopsies, and a raft of blood tests.
All the while, I have been feeling more and more wretched. I’m short of breath, everything aches, it hurts just to move around, and I’m reacting to everything – foods, deodorants and perfumes, the stuff we put in the dishwasher. I’m itchy and nauseous and fatigued and am puffy with sneezing and wheezing and honestly, yesterday it felt like I was dying.
It’s okay. I’m not.
Instead, I have Mast Cell Activation Syndrome (MCAS), brought on by the SJS, where my immune system has gone bonkers and is attacking everything and seeing everything as a threat. What a drag!
That’s okay. I have new meds for that. And a new restrictive diet coming.
I also have Sarcoidosis – another new diagnosis to add to the string of beads that is my ever-growing list of complications from late-stage Lyme. I have three granular tumors in my left lung. Non-cancerous so far, but problematic.
And my thyroid is dangerously low. Again.
We are hoping to stave off another Myxedema Crisis with some tweaks to my thyroid regime, and daily bloods to monitor my changes.
The Sarcoidosis can’t be treated with steroids, because my body doesn’t react well to steroids, so we will be using a range of antibiotics and anti-microbials, like the ones that had my down for the count for two years back when I did my huge Lyme protocol ten years ago, that gave me back my life after I sacrificed two years to aggressive and cruel treatment. It was worth it to get my cognitive function back, and to have so many improvements with my overall health, although I never got to finish the treatment when my doctor’s clinic was shut down. That was my one shot at a cure for Lyme, and I missed my window. So now I just have to deal with that.
As of last night I have a plan. Once we have treated the Sarcoidosis and my thyroid is stable, I am going to embark on a course of chemotherapy that has been proven to assist patients with late-stage Lyme with Cardiac involvement. It won’t cure anything but it should knock down my infection levels to a point where my health improves again, and stays stable for a while.
So, that’s craptastic. But also, same-old same-old.
Sigh. I get a bit over it sometimes.
I admit to having been a bit weepy, and a bit angry the past few days. It’s so frustrating to just never get ahead for long. But as one of my specialist infectious diseases physicians said to me on a telehealth conference call between her, me and my regular doctor last night, “Nicole, this is just the past catching up with you. Lyme was always going to bite you on the arse in the end.”
So, yeah, that’s my update.
Two nights ago I poured myself a glass of wine (I rarely drink, and never on my own). I set myself up a small plate of olives, some goat cheese and a few rice crackers. I put on a favourite classical music playlist, and I sat on the deck at sunset with my dogs (Ben was away) and I felt, deep in my bones, that things needed to change. That I am 57 and everything is catching up with me. I have late-stage Lyme with complications, and a more recently diagnosed genetic degenerative and life-limiting disease, and I don’t want to die with my books unfinished, and my special projects and teachings unfinished, and I can’t keep going by relying on stubbornness and brute determination – which have been my lifelong default patterns.
My spiritual work and teachings matter. My writing matters. Ben, and a gentle life, and connection to a few precious people matters. My community matters. How do I map that all out so I can rest and recover, and my body can get what it needs to heal as much as it possibly can, in order to give me my best possible quality of life?
What will that look like?
I don’t know yet. I’m content to stay open to the possibilities, and I trust it will slowly fall into place.
Anyway, I promised to update you, and now I have. I’m okay, I have a plan, and this is how my life often looks, as I bounce from one health thing to another. It’s situation normal in my household. That’s just life with chronic illness.
Today I will be packing Etsy orders (that is 100% joy for me, and no effort at all), resting, and hoping my croaky voice from having tubes shoved into my lungs will keep resolving – because right now I sound like Darth Vader if I talk too long.
I’ll write more soon.
Lots of love, some heavy sighs, and yeah… I’ve got this. Love you, Nicole xx
