Blessings of the Season to you all.
I love Yule. Over the last few years it’s become my favourite Sabbat. It’s a very personal one for me as rituals held the last few years have been so incredibly impactful.
This is the first time I’ve felt the urge to write in too long. It’s the first time I’ve properly sat down and contemplated my faith, and the Sabbats, and the seasons. Life has certainly been a challenge and I’ll be blunt, my faith was put on my backburner. My connection with Herne has been sitting there, a little too inactive within my awareness. However, I have been active in my role as Hunter, doing whatever it takes for survival.
I mentioned in a post six months ago a little of what’s been happening. Buckle in, it’s a bumpy ride.
A year ago today, my beloved and I were handfasted. Just the two of us, the Gods and Ancestors, the winter sunshine, a cool breeze and the sound of the flowing Murrumbidgee River. Our dreams of an actual wedding was initially squished by the pandemic and then shit just started happening. We realised we didn’t want the extravagance. And this ceremony was beautiful, and heartfelt, and full of tears and joy and more tears and love.
Two days later, my beloved had a 7mm benign adenoma removed from her parathyroid. It was the first time she had gone under anaesthetic since a twat-of-an-anaesthetist at Wagga Base didn’t monitor her properly and allowed her to die on the table during a procedure. But this was done privately, without issue, and we thought that everything would be golden. We were told all the physical pain she’s been experiencing (for most of her life) would be gone as the adenoma was impacting her calcium levels and, in time, would balance itself out.
October came and I dropped her off to the ER with abdominal pain. They gave her endone, a script, and sent her home. Forty minutes later she began to experience her first hemiplegic migraine – a migraine that mimics a stroke with R side facial paralysis – and passed out. As she passed out in my car, she experienced a type of seizure that was reminiscent of the dancers from Michael Jackson’s “Thriller” video. She went back to hospital in an ambulance, and we were terrified she had had a stroke.
A month later she was back in hospital after losing most of her vision in her right eye due to optical neuritis, the swelling of the optic nerve. She was diagnosed with IIH (Idiopathic Intracranial Hypertension) which is where the body produces too much spinal fluid that collects on the brain, causing her daily headaches and migraines. With approval of the neurologist she was given the Pfizer booster after three days of heavy duty IV steroids. That was a massive mistake, as it took her six weeks to recover.
The migraines became regular. Her body would tremor – either just her leg or her entire body, for up to an hour.
In January she began daily vomiting. She developed POTS (postural tachycardia syndrome) because, while recovering from the booster, her fatigue got so bad she would nearly pass out just having a shower. She couldn’t see, she was bedbound, she couldn’t keep food down. She spent more time in hospital. Her mother moved in with us to assist in monitoring her on the daily while I worked. It got to the point where no one was comfortable with her home alone, just in case she passed out and couldn’t get to safety in time.
Between October 2021 and May 2022 she had twenty three trips into the ER with varying levels of success. One trip in after a hemiplegic migraine, they put it down to “mental health”. Time and time again they wouldn’t believe her, or put her symptoms in the “too hard” basket, or would move her to the bottom of the list as she was a frequent flyer. We’ve made complaints about certain paramedics who, upon witnessing my beloved have a FULL FACIAL PARALYSIS in front of them say, “we don’t think you’ll be admitted”. She was, for three days. Both times that particular paramedic came.
We began asking for her to be tested from everything. One hospital trip said she had “signs of gallstones” but acting on it meant a week in hospital with one of the most vile people we’ve ever met as her roommate. A ninety-something year old woman who would “make a mess on the floor” because she didn’t get her way.
Her POTS diagnosis was a game changer as we couldn’t understand why she would want to pass out so easily. We’ve missed numerous events because she could not handle being upright for a car trip further than the hospital or the doctors office. And it was an off-hand “maybe” from a visiting ER Doctor after many others had done the same test time and time again. It goes to show what happens when you finally find someone who will listen to you, and not be immediately dismissive because the case is “too hard”.
With her adenoma follow up, we asked the Endocrine surgeon to allow for an ultrasound to rule out Addison’s Disease. At this point, with my diary of her daily symptoms being heavily recorded, we seriously wanted to rule out everything.
Two weeks she had her gallbladder removed by the same amazing (and now retired) surgeon who removed her adenoma. Her gallbladder had adhered itself around the stone, causing a good handful of issues. The stone, its size somewhere between an Allens Clinker and a Cadbury Easter Egg, is now shown with pride at all other specialists we are continuing to see. How it didn’t make its way to pathology, we’re not sure.
We have confirmation that she does not have MS as the neurologist confirmed last week. She is currently wearing (the cutest little) heart monitor and seeing a cardiologist. After trying to see a rheumatologist in Wagga for the last two and a half years, we’re now finally able to see one in Sydney. I say ‘finally’ as she can now manage a car trip, however the following day is in excruciating pain. We’re hoping the rheumatologist can confirm Ehlers-Danlos Syndrome (we know she has it, just not what type) and anything else.
With every day that goes by since having her gallbladder removed, my beloved is slowly regaining her independence she lost for too long. Pacing herself and monitoring her energy and POTS, she’s back in the garden, and bossing me about the kitchen, and no longer bed-bound. She’s regained most of her sight but unfortunately has a permanent blind spot just outside her central focus. She’s finding joy in the little things again, getting frustrated that there’s still a physical barrier limiting what she’s able to do (when she’s done too much) and forgetting just how far she’s come in comparison to five-six months ago.
Per the above, my focus has been on encompassing one’s self as the Hunter, the Protector. I’ve been focusing on doing what I can to ensure my beloved feels safe, gets the medical attention she needs, and following up on every specialist we can possibly get a referral to. And I will continue to champion her until her voice is properly heard, and she gets the correct medical management plan.
In the meantime, I’m slowly doing things. I’m back at the gym, I’m on better mental-health management, and I’m looking forward to this year’s Australian Wiccan Conference. Whether I regain some Pagan-based daily activities between now and the AWC in September, who knows. Physical ritual is not a priority for me right now. My chanting and the music I listen to on the daily, the small moments of acknowledgement, that’s enough to bring my energy back into alignment.
The bumpy ride isn’t over, and we will keep searching for a higher mountain to shout from to the medical world until her voice is heard.