The Long, Sad Tale of WOE

Posted on August 15, 2025 by Camylleon

First, this isn’t sadfishing. Honest. Just a combination of venting, warning, and attempting to laugh at the ridiculousness of life as it is in this bizarre timeline we’ve found ourselves in. We’re okay. Shaken, sure, but essentially still in the good fight.

Why is it that it has taken me so freaking long to get to this blog? To get my storefront layouts done? To hangout on social media? It’s a long, sad, tale of woe (therefore the title! 🤣) With a deeeeep breath, I’ll dive in, and hopefully keep this under 1000 words!

First, a little background. Hubs and I are both diabetic. I’m not yet stabilized (I’m working on it!) and he is. He’s actually able to control his sugars with just diet and exercise. Yep, I’m jealous. We’ve got a lot of other little problems as well, I like to call refer to them as “the death of 1000 cuts” because nothing individually is life threatening, but altogether they’re complicated.

During the pandemic, two of those complications happened to Hubs. First, there was a blocked blood vessel behind his left eye. This meant that he’d be having a series of injections in that eye. (YIKES) Second, after his second Covid Jab, he developed Shingles. In his right eye.

Let’s say right here and now, Vaccines are a mixed blessings. The Vaxx that protects us from Covid can mess with the immune system of those of us who are compromised, and that’s what happened to Hubs. However, the Vaxx for Shingles protected MY BUTT, so I’m more than a little appreciative of that. Everyone has to pick their poisons, but let me tell you, as someone who has never even had Chicken Pox, I was EXTREMELY eager to get that Vaxx, and I’ll forever be happy about that decision. Shingles is nothing to mess with.

Hubs is currently employed in an extremely visual craft, working for an architectural engineering firm where he’s responsible, primarily, for the layout of plumbing and fire protection. Tiny lines. Everywhere. Not easy to do when both eyes are compromised.

After steadily improving for over two years in his right eye (the Shingles eye), he suddenly had difficulty seeing again. (I was extremely lucky that I was able to get my cornea surgeries in while he was able to drive in between!). The glaucoma doc said there wasn’t anything else he could do, and sent him to another specialist. Thankfully, it was the same doctor who’d done my corneal surgeries. We absolutely trust her and adore her, honestly. She’s freaking amazing.

We’re in an HMO, of course, and so armed with the appropriate referral from his PCP, we made the appointments and continued with treatment. Turned out that Hubs had two ruptures in his right eye. Two. Ulcers, she called them. No idea how that happened, and we were a little freaked out, especially when she said that one of those was extremely large, looked like it was getting longer, and it was deep. If it got deeper, it could actually cause his eye to…well, burst. All the liquid from his eye would come pouring out and…alright, we were freaking out with good reason.

After trying several things, and doing many tests, emergency surgery was finally set up about two weeks later. Emergency enough for her to schedule him in the morning before her office hours. Thankfully, there’s a surgery center attached to her practice, so we got there really early in the morning on July 1st and she sewed the large ulcer together, and then his eyelid was sewn shut so that it would heal properly without stress.

In the meantime, I was diagnosed with a retinopathy. Fortunately, it was caught early enough that our retinal doctor (the same one giving Hubs injections in his left eye) said I’d be able to have the laser procedure instead of injections. Whew. That’s the second time my vision diagnosis has been what I refer to as a “one and done.” Surgery was scheduled, and I made the call to get my referrals.

Now, we’re in a bit of a flashback here, because my retinopathy diagnosis actually happened a couple of weeks before the surgery for Hubs’ right eye. Mid-June, to be exact. The week before my procedure, the eye clinic called me to cancel my appointment. They were no longer taking referrals from our primary doctors’ practice.

WTF??!!??

It took some poking around, but I found the reason. After several phone calls to the insurance company and doctors offices, I found it on Google. Of course I did. The doctors’ practice had filed for bankruptcy. Neither our doctors, nor the insurance company was aware of that. OR at least our doctors offices didn’t admit to it. This practice had over 40 doctors and almost a thousand patients. It’s possible the doctors knew, or some did and some didn’t. At any rate, they had not yet informed their patients OR our insurance company. I’ve no idea if they told any of the others.

So hey, Luigi? I get you. I didn’t go there, but I totally feel it.

We were informed by the insurance company that specialists’ contracts were in effect until October. We were given continuation or transition of care forms, and were told to pay the specialists up front and remit ourselves for payment, so that’s what we’ve been doing. It’s painful, because it’s a lot of money up front. Especially for surgery. And those injections are about a grand a piece.

The end of of this story? Our doctors’ practice declined to sign a new contract with our insurance company because they wanted more money per capita from them. Greedy bastards. This means that we’re no longer able to see our doctors, and for someone with a LOT of medical anxiety, that really hurts me. But I kept my therapist, so that’s a kind of fair trade. I might be alright. The only other doctors in our town were booked through December 2027, but we found some that weren’t too far away with a much larger practice through a local hospital. We’ll have to readjust, it’s a different hospital, different specialists. Hubs is debating paying out of pocket for our retinal doctor, because he’s out of network now, but he keeps his other specialists and gets back his endocrinologist so that’s just about even.

Will I ever go back? I’ll want to, that’s for sure. My doctor is…amazing. Sheesh, I still think of her as “my doctor.” But I can’t trust that practice now. Hubs is going to be looking for a job soon (a whole different tale of woe), so our insurance might change but still, they dropped the ball big time by not giving anyone warning ahead of time, and then being greedy and refusing a new contract. I’ve never before even heard of a medical practice declaring bankruptcy, so I feel they’re horribly mismanaged. I keep hoping my doctor will move to a different practice and solve it all for me, but I’m not her only patient, I know that.

The good news? We’ll never need another referral to see the doctor who just did Hubs’ eye surgery…

Hopefully I’ll be around more often now. This week was the first week with only one medical appointment, so our schedule is mellowing out significantly. I’m getting more work done too, just finished laying out all the Anubis products! He’s looking magnificent, as He should!

Again, I’m not begging for likes 😉but I’d love any likes or comments you’d feel like leaving me. Needless to say, it’s been a rough couple of months! Thanks as always for reading! Until next time…

~*~Camylleon~*~

Autism-Adjacent, part One

Posted on May 23, 2025 by Camylleon

I believe I’ve made a few references to my mental health battles here. Maybe not much specifically, but little hints here and there. Some might have assumed these were jokes but I assure you, they’re not. 🙂 With that in mind, I figure I might want to actually explain what that journey has entailed.

I can’t believe I made it this far into my life without therapy, honestly. The first time I saw my primary care doctor, which is going on 6 or 7 years now, she immediately had the nurse drag in the EKG chart and hook me up; my heart was racing that badly. Panic attack? Likely, only I didn’t know what that was. I mean, how do you explain what that feels like to someone who has never had one? They’re all so individual or at least can be. I now know that one of my reactions is a throbbing in my lower back, and sometimes the entire world turns yellow. No one’s ever said anything about panic attacks like that to me.

I thought it was a heart attack. Kinda glad it was “only” a panic attack.

One of the many traumas in my life that I’ve had to deal with is one I’m sure many, many women will relate to. Horrible doctors that minimally don’t listen and maximally berate you, or worse. I hadn’t had a decent doctor who listened in ages at this point, aside from the doctor at that practice who had moved on and abandoned me, and I’d only seen him for about 2 years.

Needless to say, when my PCP got the test results from the EKG and I broke down in tears, she sat down to talk to me. I bawled and explained that I felt like I had some sort of medical PTSD. When I first attempted to get my neuropathy diagnosed (I was pretty sure by this point I knew what it was), the first doctor didn’t even look at my feet or send me to a specialist or anything but write me a couple of prescriptions. The second doctor had told me there was a 40% chance we’d never know what was wrong with my feet, but when I asked about a specialist, she said there wasn’t any need for that.

Right.

But finally, I found a doctor (female, of course) who was listening to me. Not only did she write me my first prescription for anxiety medication, and send me to a therapist, but she also sent me immediately to someone when I complained of menstrual issues. The absolutely WONDERFUL (female) doctor I saw for that caught the endometrial cancer and sent me to a WONDERFUL gynecological oncologist who got me in for surgery 5 days after I saw her with the diagnosis. 5 years later, I’m still clean, and I hope to stay that way.

Long way around, I’m sure, but that’s the background for how I finally got help.

As you can see, and probably know, or at least likely can understand, some of my issues were caused by direct circumstances. Attending what should have been a fairly normal, mainstream church during a particularly fervent Charismatic Movement messed me up, sure. But when combined with an authoritarian father who was really a Baptist in Episcopalian clothes and my innate need for his approval, well, it did double damage. They either refer to that as religious trauma or sometimes religious PTSD. I’ve got issues, like many people, because of bullying throughout my public-school career. Anxiety, just a touch of OCD, social anxiety to the point of avoidant personality disorder, and a little privacy issue. Just a little. Yeah, there’s event-based damage that I can track back, and have traced some of it.

But then, there seem to be issues that were just always there. I wrote on the wall inside my mom’s closet “why doesn’t anyone love me” when I was six. I remember getting stomachaches and not wanting to go to school in kindergarten. I used to hide in my closet to be alone, to the point my parents would freak out and start looking for me. Something was going on genetically, I assumed.

After a false start with a therapist who sucked, at least for me, I ended up with the person I see now who is phenomenal. Perfect for me. Grew up in the same town as I did, even knew some of the same people although she’s a few years older. Her sister was a Wiccan and into ghost hunting, so she knows what I’m talking about in the largest and most important parts of my life. Also, that same sister who unfortunately departed the mortal plane too soon, was trans. She gets my life, my point-of view. I don’t worry about judgment. Phew.

So, the time came when I had a question to ask her. I’d been on TikTok (bad idea, btw), and seen many, many, many people discussing being autistic. I’d picked up a lot, but at the same time many of those people were self-diagnosed. No judgment there, because I understand how hard it is for most people to get therapy and treatment for their mental health. Self-diagnosis is often all they’ve got.

At the same time, I wasn’t sure then, how accurate they were. I had so many “symptoms” that were similar to autism. SO FREAKING MANY!!! Hyperfixations, anyone? I’ve got my share and then some. I’ve been studying cults and religion since grade school. If you want a good genealogist, find someone with a hyperfixation, you won’t regret it. I am amazing at research. If I want to know something, I will not stop until I do. All the food I hate is because of the texture. I will not wear polyester, and you can’t make me. The feel of that is just…slimy…I’m cringing even thinking about it. And of course, there’s more.

When I brought that up to my therapist she smiled broadly, which did worry me slightly, I’ll admit. But she said, “you’re ready for your diagnosis.”

OMG, I’m over 1000 words already! Since attention spans are so small these days, I guess I’ll have to put the rest in a part two. See you there!

Fresh Eyes

Posted on March 13, 2024 by Camylleon

Fuch’s Dystrophy is a condition where your cornea doesn’t release the liquid in your eye like it ought to. It makes for some gorgeous affects, and horrible driving. Especially at night. Everything has such beautiful auras. I’ve said it rather consistently now, its like living in Van Gogh’s Starry Starry Night.

Fuch’s Dystrophy. I know, it’s a weird name, isn’t it? Everyone pronounces it FOOCHES, likely to avoid the obvious. My Dad has it, so I knew it was distinctly possible I’d end up with it as well. Knowing what the symptoms are, it didn’t surprise me at all when I realized I was experiencing them.

It seemed just a matter of time.

I didn’t expect to be sent for surgery immediately. I figured there would be some sort of “conservative treatment” as it seems that’s what every doctor does first. Likely, that’s because that’s the demand of the insurance companies, but don’t get me started on that.

Van Gogh’s *Starry Starry Night*. See that aura on every star? Those swirls in the night? I did!

If you’re curious about it, Fuch’s Dystrophy at American Academy of Ophthalmology

When the yellow rotating light on top of a tow truck on the Interstate caused an affect something like a black hole, I knew I shouldn’t be driving at night anymore. The first time I saw the surgeon, she grounded me from driving altogether. That sucks.

Back in my Dad’s day, he had to have complete cornea implants. With stitches. He had to hang his head off the bed to sleep at night for three days or something like that. He popped the stitches on one eye and ended up having to live with that until he was up for a second set, about 20 years. Sounds like fun, right?

So I was nervous to say the least. Nervous but excited, and in a way, in an important way, lucky. See, my husband had a swollen blood vessel behind his left eye for which he gets injections. Then he ended up with shingles in his right eye for which he had drops; drops that caused a cataract for which he now needs surgery.

Lucky because although it was surgery and didn’t sound fun at all, it was “one and done.” No injections. A fair trade, I’d say.

The first surgery went along well enough except that the doctor failed to mention the aftercare instructions meant that for 24 hours I could only stand or sit for 15 minutes at a time, followed by an hour of laying flat with my head straight up and staring at the ceiling. Starting immediately. In order to get home then, we had a normally 45 minute drive which would have taken 3-4 hours, and then a postop first thing in the morning the next day. Um, no.

Without planning then, we found the closest hotel and I checked in. As I approached the counter, the desk clerk said the name of the clinic we’d been at. I guess the eye patch was a dead giveaway and we weren’t the first patients there. That was the case, as it turned out they had a patient discount.

This all seems like everything’s going along swell, right? Just wait for it…

They no longer perform a complete cornea implant for this Dystrophy. They graft. Sort of like patchwork. Its brilliant, because it means that a donated cornea can stretch so much further. The presurgical procedure for this involves a laser making a hole in the iris. My doctor told me it would feel like a rubberband snapped on my eyeball. She was right. That was exactly what it felt like. This creates a bubble in the eye that presses the graft into place and holds it there.

So far so good, right?

That night I was fine for a few hours but then I encountered horrible, terrible pain.

I had been told to call if there were any problems but does anyone ever really believe that? I didn’t. All I could take was Acetaminophen, and Acetaminophen PM, and boy howdie did I. Take the pill, go back to sleep. Fortunately the hotel had gigantic puffy pillows that made the perfect “V” shape to hold my head in place, so I was able to sleep.

I saw the doctor in the morning, and she knew what had happened almost immediately. I had somehow, by rubbing my eye or something, moved the bubble so that it was lodged behind my pupil.

That explained the pain.

She set me up for surgery immediately after her morning office hours. Their surgery center was in the same building, so all we had to do was move from one waiting room to another. Unfortunately, I had eaten that morning so all I couldn’t have had anesthesia. I didn’t care. It couldn’t hurt worse, and they promised me that I’d feel fine.

So I waited. By waiting, I mean I fell asleep. In one waiting room and in the other, leaning on my husband’s shoulder for the most part, and an obliging post for a bit. I couldn’t keep my eyes open, and I wasn’t even popping the Acetaminophen PM anymore. But hell, it passed the time.

12:30 and they called me in for surgery. It was the lunch hour, so the surgical area was weirdly quiet as the team working on me were the only people back there. I was all comfy on the surgical cart, as ready as could be. The doctor was dressed for surgery, pulled the eye open, and said, “its back in place.”

The same way I’d knocked it out of place, I apparently knocked it back into place. Now that I was awake for a few minutes, I did finally notice that there was a lot less pain.

The second eye was a lot less trouble. We knew the routine now. I had a reservation and packed a bag for the hotel. The hubs got me set up, then went home to be with the cats & my best friend stayed the night with me. Hubs wanted to make sure there was someone with me, just in case. So we extended the stay an extra night just so we could just hang out.

I thought, for sure, that my eyes were as fantastic as they could be when this was all done. The actual healing was almost immediate. Two days, tops, and my vision was up to pre-surgery condition, a week and I could see better. That was it, I was sure.

Until they tested my vision. I now have my very first pair of all-day glasses. Not just readers, mind you. Proper glasses. I apparently now have an astigmatism, which doesn’t surprise me either. I thought my vision was as good as it was going to get, until I picked these up.

So I’m back to work. I can read. I can bead. I can create. Its keeping me busy, but then it was keeping me busy before, but I’m having a lot more fun with it now that I can see.

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