Histoplasmosis and Macul-argh Issues

When I was pregnant with the girls, right around month six or seven, I was sitting at my dad’s house, looking out the window, which had venetian blinds on it. The blinds were down, but open, so that one could see between the slats.

I noticed that the lines were “wrinkled.” Wavy. The lines were not straight, which conflicted with everything – and I’ll be the first to admit that it’s not much I know about physics, although it is plenty enough to know that this wasn’t quite right – that I knew to be true about physics.

I gave birth to two healthy, large babies at 39 weeks and five days. I’d been told to have a go bag ready – I was delivering in Erie – starting at around 36 weeks, which is considered full term for twins.

I had no pre-eclampsia. No gestational diabetes. The only thing wrong was that, toward the end, the girls were beginning to lose fluid as I was beginning to retain it.

I gained over 100 pounds during pregnancy – around 20 of which was baby, etc. The majority of the rest was water. I lost around 60 pounds (of the 80 or so remaining non-baby pounds) in the first two to three weeks following the girls’ delivery. It was all water.

My eye, however, never went back to normal.

This is basically what it looks like when I close my right eye and look at anything straight on:

macular-degeneration

I’ve always described it as being like if you were to put your eye right up to a window against which rain is falling and attempt to look through the raindrop on the windowpane. Distorted. Bubbly.
I don’t know, you’re a creative bunch. I’m sure you’re picking up what I’m laying down.
There are some gray spots around the center of vision, and it’s not as predictable a wave…it’s just pieces missing or grayed out altogether, but it’s not yet well-represented by the central vision blackout common in macular degeneration.

That’s for a couple of reasons: 1. It’s not macular degeneration. I’m too young for macular degeneration. The fact that I have a perceived emotional age of around 83.5 notwithstanding, I’m only 35. 2. It’s progressing. When I went for my first eye check, shortly after the girls were born, I had a mild shadow on the imaging.

Today, following a contact exam, I got a look at the state of my left eye hole following imaging to see that what was a small blue-white spot on my macula last year is now about twice its original size and showing the beginnings of the punched out black center common in most imaging of ocular histoplasmosis.

I don’t have a copy of my image, but this is basically what my left eye looks like on an imaging level:

See the source image

That’s not my actual eye, but roughly representative of the size and involvement. Histoplasmosis is a fungal infection common in the Ohio and Mississippi River Valleys of North America, as well as several places in South America and other parts of the world. The fungus, from what I understand, lives in the soil and is potentiated in the soil containing it by bird and/or bat droppings as well as humidity and generally warm, damp conditions. It is inhaled microscopically when soil containing the fungus is kicked up, and is commonly a risk to gardeners and farmers, as it can be a pretty regular unacknowledged element of the environment in which chickens are kept.

What got me thinking today was the combination of a couple of things: The macular scarring, the unexplained and unintended weight loss (or at least inch loss – down another jeans size this week), kidney lesions and other rheumatological symptoms could be related. I’ve always just assumed that the histoplasmosis – a diagnosis verified by three independent ophthalmologists over the past five years (insurance changes, not doctor shopping, for the record) – was an exclusively ocular issue.

Maybe it could be implicated in the other “mystery” symptoms that I’ve chosen to stop pursuing because I’m tried of paranoid doctors thinking I’m after opiates when all I really want is to stop feeling like I’m living with moderate to severe flu symptoms day in and day out.

I don’t know. In any case, I’ve been looking through some recent research on ocular histoplasmosis and I think it may have been something I should have offered to medical providers in the past but never thought to because, in my head, my eye doctor told me about it so it’s only eye-related.

What I do know for sure is that I’m not a fan of worsening eyesight. I was sent home with an Amsler Grid and a clear instruction to look at it regularly and report any further vision changes posthaste. Because eye-specific or not, if the histo causes another bleed, more vessels to develop, or other leakage of fluid in the retina going forward it can only be treated if it’s caught quickly. It’s like “Santa Clarita Diet.”

We can’t change the fact that you’re a zombie now, but we can maybe keep you from getting any more zombieish if we’re quick.

And lucky.

Mostly lucky.

My poor uncle has macular degeneration. He’s got it bad, actually, and it’s been a sort of grief-infused process, the loss of his eyesight. He lives in Kona, Hawaii, and his greatest love is boating and fishing. But with the loss of eyesight comes a certain amount of restriction and I saw him more than once have an emotional reaction to that fact the last time I visited.

Which was last year. When I got my scuba certification, actually. And saw God.

In the form of manta rays.

Gah, this was the single best experience of my life so far.

I would really hate to lose even more of my vision. I don’t know that I’ll ever get another opportunity to experience something that amazing again, but if I do I certainly want to be able to enjoy it to the fullest extent.

I remember once, when the girls were still very small – maybe a few months old, holding June and trying desperately to rock her to sleep. It was soon after they were born, the hormones were still all whacked out, and I’m absolutely certain I had a significant dose of postpartum depression that went unacknowledged because interpersonal drama was heavily at play. It behooved those who were making me crazy to take advantage of the organic, postpartum crazy that they were being given, upon which to base their gaslighting, as a bonus.

She just would not go to sleep, and I was already drained, and exhausted, but then I stopped rocking her and looked down directly into her face and I just burst into tears. I have never known a reality where I could clearly see my child’s face with both eyes open. Her face has always – and always, always will – look like this guy’s face to me.

macular-degeneration

And that’s basically a total drag. I’m better with it now, but at the time that really, really bummed me out bad.

Anyhow.

Histoplasmosis and macular issues.

But you have to say “macular” like a pirate.

You have to say “maculaaaaaargh.”

Histoplasmosis. It’s rare, most places. Even where it’s not, it is rare for it to affect the macula. But when it does? It’s basically macular degeneration for those under 60.

Good times.

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