I haven’t updated folks about some of the chaos in my world in a bit, so I’m taking a moment to do so since yesterday was a very bad, no-good, fuck-it-all kind-of day. I’m all up in my feels and need to get some of this out there. It’ll be long, so bear with me.

There’s a ton of chaos in the background that I’ve been keeping offline, but I’ve reached the point that I need to address it as I know it’s impacting my relationships with friends and readers alike. For those who haven’t seen the social media posts, my spouse has come out publicly as a trans woman named Molligru Oak, or Molli for short, which I am ecstatic about. I mention this here so that you know who I’m referring to when I talk about Molli. 😉 

My wife was laid off in October 2023, which I’ve mentioned before, but before that, she began struggling with medical symptoms that were identified as being a mix of untreated sleep apnea, long covid, something possibly rheumatological, something thyroid related, and possibly autonomic dysfunction. This happened back in the summer of 2022, and at the beginning of it, the symptoms were attributed solely to her sleep apnea.

At the time, we were both seeing doctors and specialists as part of our local Pac-Med aka Pacific Medical Center. This hellhole of failures sent Molli to a specialist who doesn’t treat apnea. They knew we suspected apnea, the referred doctor suspected apnea, yet he wasn’t the doctor who treats apnea patients. We spent a year spinning our wheels as her symptoms grew worse and very little was done to determine and treat the cause. Finally, a scheduler at Pac Med noticed she was seeing the wrong doctor. They called us the day before a major appointment to send her to a sleep specialist. (Before this, we thought she was already seeing a sleep specialist but apparently not.) Her previous tests with Dr. I’m-Not-Qualified showed she didn’t have apnea, despite her symptoms meeting the checklist for it: 

• • Snoring while asleep
  • Waking one’s self up by snoring and gasping for air
  • Holding one’s breath during sleep
  • Violently twitching and jerking during sleep  
  • High blood pressure

…and so on. I pushed hard to repeat the sleep test, which they did. Low and behold, she has sleep apnea. It took months to get the correct CPAP machine and a properly fitting mask. Once that happened, months passed until she was feeling some relief, but not all of her symptoms went away.

We had to fight to get anyone at Pac-Med to take us seriously with regards to long covid, autonomic dysfunction, and the fact that she has Raynaud’s Syndrome, which is a rheumatological disorder. No one wanted to run tests (it’s like their allergic to it at Pac-Med), but we pushed for referrals to doctors outside of Pac-Med, including a specialist who is the only physician in the PNW who diagnoses and treats autonomic dysfunction and long covid issues. During all of this, Molli was receiving accommodations at work because she couldn’t work full-time or with full focus. It was also during this that she didn’t “get better” fast enough and ended up being laid off (along with a ton of other people). 

So Pac Med’s mistake in sending Molli to the incorrect doctor and taking forever to fix that mistake probably cost Molli her job.

She was given three months’ severance, but we knew she wouldn’t be able to find work during the holidays when no one in tech is hiring. In fact, they were (and still are) laying off people left and right. Without diagnosis and treatment for everything going on health wise, she wouldn’t have a chance in hell.

It was also during this time that Molli realized the medication she’d been taking for most of her life for her ADHD had been linked with horrific side effects and organ damage. Also, it wasn’t supposed to be used for ADHD. She switched meds, but this one was also off-label in its treatment of ADHD. She felt some of her inability to focus was being caused by this. 

If you’ve never dealt with chronic illness, you probably have no idea the lengths our government takes to ensure that people like us don’t get treatment. The medications that keep my pain in check are big drugs, so lots of physicians worry about me being labeled as drug seeking. The government  worries I’m going to jump to fentanyl or something because I need medications to keep my neuropathy in check. It’s wild and very well regulated to the point that often, people like me have trouble getting our medications filled at all. For ADHD, most of the meds that work best are stimulants. The government doesn’t like to hand those out to people that need it because they think we’re looking to take speed. They don’t care that sometimes, these are the only meds that keep us able to function. Again, fear means rather than watch carefully, doctors just up and refuse to prescribe much needed medications. 

Changing meds is a LONG and painful process, which Molli’s going through and will be going through for probably six more months. This means that until we deal with all of Molli’s health issues, particularly the ADHD, she doesn’t have the focus or ability to hold a job, let alone look for one. 

We were in the process of getting treatment for her long covid and autonomic dysfunction issues by a great doctor who is the only doctor in the PNW that diagnoses and treats these. It was a five month wait for an appointment, then another few months before the dysfunction testing. Because health insurance is a horrible racket that often underpays physicians, this amazing doctor left the practice he was at a week before Molli’s first appointment. So now we’re scrambling to get an appointment at his new private clinic, which doesn’t take insurance. This doctor is tired of fighting insurance to get treatment coverage for patients with long covid and other big issues often caused by it. Because you know, covid’s over and gone so why should anyone need treatment? Who knows how long it’ll be before these new appointments happen, let alone treatment.

Severance took us through January 2024. With her still unemployed, Molli and I had enough in savings to get through to April. The savings was meant for a new roof but what do you do? We are amazingly blessed to have that money at all. Many people don’t. But since all of this is going to take longer than April, we were left asking, “What do we do now?”

Molli and I decided to raid our retirement.

Doing so means we can pay our bills for hopefully long enough to get through all the medical drama. (And before anyone asks why I can’t go get a job, please remember that I am permanently disabled by my Sjogren’s Disease and a birth defect in my spine. Between that and long covid, I will never hold a “traditional” or “normal” job again. Being self-employed as a writer & artist is pretty much all I can handle and some days, not even that. Speaking of, buy some books or art, will ya?)

From a financial and health standpoint, our life is pure chaos. Seventeen-year-old Malley-cat has worsening dementia, heart disease, IBD, Stage-II kidney disease, and arthritis; Riley-cat (also 17) has major heart disease and Stage I kidney disease; and DiNozzo (15) has epilepsy, IDB, and cancer.  Their meds cost us $1200/month so we’re feeling the job loss right now a lot. We’re paying $2100/month to COBRA to keep our insurance because any insurance we could hop to through the state wouldn’t cover 70% of our medications or necessary specialists, or if it did, the cost-per-month would be more than what we’re paying for COBRA. Last week, my 12-year-old car’s normal maintenance uncovered a crack in my engine block and one of a tire axel, both of which will be a hefty cost to repair. 

I thought I was dealing well with everything and then yesterday morning happened. 

My disabilities are from both neurological & rheumatological conditions, so I’ve had a handicapped placard since 2008. I was diagnosed as permanently disabled back in 2016. None of this is going away. There is no way to heal these my disability, only ways to treat the symptoms and side-effects. Because I taught for 12 years, I was supposed to have my student loans forgiven, but I was one of those caught in the “bad government loans” cycle where my loans, while being funded by the US Government, weren’t “government funded enough.” I don’t even begin to understand the why, but needless to say, I’ve been paying on these loans for two decades and according to everyone, I don’t qualify for student loan forgiveness unless I file it under disability. 

Recently, I’d made an appointment with my primary doctor to have her fill out the paperwork to have my loans forgiven by declaring me disabled with the government. She refused. This doctor is not only queer-phobic and incompetent as fuck (as evidenced by a lot of past visits, including this one), but she felt that as my PRIMARY care physician, she couldn’t label me as disabled. She felt that if I lost more weight, the birth defect in my spine would magically disappear along with my neuropathy. That’s not how this works. At all. She suggested I see my neurologist or my rheumatologist for them to fill out said form.

Part of the reason I went to her is that medically, I’m complicated. My disability stems from MANY issues, and she’s the only doctor who sees me for them all. Each specialist can only talk to their specialty. But fuck it, since she’s being incompetent, I made an appointment with the neurologist. This morning, this neurologist messaged to inform me that she also doesn’t feel comfortable filling out said forms because my “disability comes from many different areas.” She suggested that it would be covered by my primary care physician and if not that, an occupational therapist… As a former teacher, I know what OT does. Their job is to help you use accommodations in order to function as a “full member of society” again, aka to get you back to working like the good cog that you are. 

Don’t get me wrong, while OT’s do great things for some people who need help learning to say brush their teeth again or walk, their work is two-fold. They’re helping someone learn to function because the government wants them to contribute again. No free rides here. 

I have POTS. If I stand up too fast, I faint.  If I stand for longer than 5 minutes, I’m in excruciating pain from my spinal defect, I can’t feel my feet or legs from my Sjogren’s driven neuropathy, and my heart races due to the POTS. I often lose my balance. If I try to walk after standing still too long, I trip and fall. I break bones. All of this is well documented in my medical records. 

Hell, insurance even paid for me to have mobility aids like an electronic scooter / wheelchair because my records show that I cannot function out and about without them. Even my health insurance knows I’m disabled. But the bureaucratic bullshit at Pac-Med makes for chickenshit doctors who are too afraid to actually treat their patients. When I brought up my concerns about this, politely I might add, I was dismissed. It was bluntly suggested I look elsewhere for care. 

In other words, Pac-Med just fired me. In one go, I’ve lost five doctors I rely on for treatment, which includes a whole host of medications, including my diabetes medications. 

If you’re living in the Seattle area, don’t go to Pac-Med. Seriously. They don’t give two shits about helping you. 

Anyone know a good rheumatologist, endocrinologist, and neurologist in the Seattle area? (Thankfully, I’ve got my new primary care physician covered!) 

While I’m thinking on this, if you’ve followed me on social media and/or this site, you know this isn’t the first time I’ve faced injustices from medical practitioners—so much so that I’ve finally done it. I’ve written an unexpected, accidental book on my life through teaching in the South, dealing with disability, and living out as a nonbinary queer person. Some of this came from working through life-long trauma in therapy, and it was the fastest book I’ve ever written, a tsunami book if you will. 

The new book is called Voices Carry: A Story of Teaching, Transitions, & Truths and is due out in August of this year (2024). Here’s the fabulous cover, followed by the blurb.

Rules of Teaching:

1. Clone thyself
2. Learn teleportation. The sooner the better.
3. Trust no one.

These are the rules I learned as a middle school teacher, though it was the last one that drove me from the classroom forever. Like many educators, I couldn’t survive the politics. After thirteen years, I bailed. How did I, an abuse-surviving queer, end up teaching in the middle of the Bible Belt? Better yet, how did I survive?

New Rule of Life:
1.  Neither my silence nor my identity is for sale at any price.

My former vice principal said it best (though I wasn’t supposed to see that email) when he asked, “Why does she always have to write a damn novel?” 

 So here I am. Writing a damn novel. As to the why…because I believe in changing the world, one word at a time.

Navigating discrimination, whether it’s from employers, medical professionals, colleagues, or family, is often fraught with uncertainty. Join Raven Oak on their journey of transition and self-discovery in a world built on silence.