Clear as Mud

Posted on February 13, 2026 by My Bleeding Ink

When you have chronic illness, a headache is rarely just a headache. What you think is a horse can oftentimes be a zebra. So when you have hydrocephalus like me, it can also be a shunt malfunction. In fact, that’s the first thing you should get checked out when you have hydrocephalus, a shunt in your head, persistent headaches and dizziness that won’t go away. “It’s the shunt, stupid” was the mantra drilled into our heads (apologies for the pun but come on, it was *right there*!) at national conferences.

Always. Check. The shunt. First.

Always check the shunt first, oh but also, “A headache could just be a headache. People with shunts can get ‘just a headache’ too.” Could just be a horse. So, y’know, figuring out when to go to the ER is clear as mud. 😐… 😐… 😐

Stress, tension, migraines can affect us too. Or in my case sudden changes in barometric pressure can cause headaches. And Colorado has those all the time! 50° swings in less than 24 hours are pretty common through out the year. And they will take me out! A day or two before they happen, I’m laid out in bed, sensitive to light and sounds. When they pass, I get better. It may or may not be shunt related, may or may not be related to the neuroma close to my shunt.

But the point is I still don’t panic about it.

Recently tho, I felt like I had a reason to panic.

I was standing in the bathroom, and suddenly I got dizzy. Not just any kind of dizzy. Not the kind of dizzy where you stand up and think, “Ok I did *that* too fast. 😵‍💫” No. A kind of dizzy that felt…familiar. A kind of dizzy that felt eerily recognizable to my soul.

The last time I felt it was summer 2013, when the 6 week old shunt they had just replaced my 17 year old shunt with failed. Feelings of vertigo followed by sensations of blacking out.

And it happened a couple more times that day. I spent the rest of the day in a small panic, knowing what I had to do, who I had to call the next day. And it was also a day spent mostly in the ER with Kischa because of some of her own pain she was experiencing that had been lasting a week or so.

So dealing with both, that was good times.

Shunt failure is nothing to mess around with, so the next day I called my doctor to have her send a referral for a shunt CT. She did so, without hesitation.

Meantime, nothing. No dizzy spells. Nothing. I get the CT, get results and…nothing. “No change in ventricles. No indication of shunt failure. “

……..k 🤷‍♂️

Life went on, ok for about a month. No dizzy spells, no headaches.

And then the headache came. No dizziness tho, so no worries, no panicking. “Maybe the weather. Maybe ‘just a headache.’ Maybe just cuz it’s Tuesday.”

But then it didn’t go away. Then the dizziness came.

But it wasn’t as frequent as when it was blatant shunt failure. And when I stopped to think about it for a second I also realized it wasn’t as bad. Oh it was new! It was not normal. But it wasn’t as severe as blatant shunt failure. So I didn’t panic.

I couldn’t just go to neurosurgery because US Healthcare 🙄, so I made an appointment with my doctor again and she agreed that the best course of action was an appointment with the neurosurgery department. “There’s a special number we can call when we feel like patients need to get into a specialty department right away, but aren’t quite severe enough to go to the ER.” So she called the number while I waited.

Neuro calls her back. The doc had enough experience to know what else it could be. Grateful for that, because the answer was something that didn’t even occur to me.

My doc wanted some blood work, mainly to look at my white blood cell count, to look for any signs of infection. She comes back and says, “Oh good, you haven’t had blood work done yet. Neuro wanted a few more tests.”

Ok. 😳

So rather than the one vile, they get 4.

I leave, with the promise that as soon she gets the results, she’ll interpret them and let me know what any results mean that might be out of range.

Meanwhile in a departure for me, I’m actually relatively calm about what the results might show. I know right, so weird! 🤣🤷‍♂️ (And shout out to the bestie who ChatGTP’d some stuff for me and helped me narrow it down before the doc commented on blood work results!) The normal CT a week earlier and the lack of frequency for the headaches and dizziness had me thinking it was likely not the shunt. That’s all I cared about it. No shunt surgery. All that mattered.

So it could be bad, but hey, I probably won’t need surgery. Let alone two surgeries in 6 weeks.

***Now’s a good time to mention, the last shunt revision really messed me up! Well, the second one in 6 weeks messed me up. The first one had me thinking, “Ok well, 17 years ain’t too bad. Whatev. Was a good run.🤷‍♂️” But the second surgery six weeks later?? The second surgery 6 weeks later, that one did a number on me! On my sense of safety. On my sense of mortality. On my anxiety! Everything leading up to that surgery -the dizziness, the pain, the black outs, the “lost weekend” I couldn’t remember. The doctor saying he was frankly surprised I hadn’t at least had a seizure as my ventricles filled up with fluid- it was all bad, recovery wasn’t great, and I was hyper aware of all my physical pain. Any little headache was not “just a headache” anymore. Led to a downward spiral in my already precarious mental health. That year culminated in me cementing my place in the Semicolon club.

So maybe someday I’ll write about that. But, y’know, probably not.

We now return you to your regularly scheduled blog****

So I wasn’t panicking. Mostly just wanted to know what was wrong.

And that’s why I’m always exhausted!!! I thought it was just because of Life™. 🤷‍♂️ Just life and everything that happens in life. Everything I gotta do as an adult with Spina Bifida. The appointments, the self care, all the things involved with chronic illness. And then my wife. All the things I do to care for my wife who has End Stage Kidney Disease and is on nightly Peritoneal (home) Dialysis. I’m the main caretaker. She helps where she physically can do things. My parents are a god send, and support us the best they can. But it’s a lot. I do a lot.

Results came in several hours later. With her comments. I took a deep breath in (I may have been panicking just a little bit when the moment of truth actually came and the results would tell me what’s been going on. 🤷‍♂️😇)

DRUMROLL PLEASE…. 🥁🥁🥁🥁

Severe anemia.

I am severely “iron deficient” anemic. Apparently there are several different types of anemia, one I think is even indicative of cancer! But mine, and the most common, is iron deficient anemia. Maybe related to my severe osteoporosis, maybe not.

So that’s why I’ve had dizzy spells. That’s why the world spins. That’s why I’ve had random headaches. And that’s just the 2 biggies that led me to seek a diagnosis. But hindsight being 20/20, it’s also likely why I have brittle nails and why the bathtub hair catcher has seemed just a little too full of hair for my taste! Never lost clumps of hair or anything, but anemia can cause thinning hair and hair breakage.

And the bruising! The bruising that seems to take forever to go away! And aren’t you glad I posted a picture of a 6 week old bruise that’s only now beginning to fade, and not of all the hair in the bathtub drain!

And I sorta just thought I’m always exhausted because everything is just a lot.

Turns out I’m doing Life™ with severe anemia. Ha! 🤷‍♂️

So. There ya go. Moosey is severely anemic. Add that to the list of stuff, along with Spina Bifida, secondary and tertiary conditions of SB, severe osteoporosis, and, I dunno, this hang nail that’s been bothering me for a few days. 😊 🤷‍♂️

So next up, an endoscopy and colonoscopy to look for a cause for the blood loss. Ulcers or polyps, respectively. Had a colonoscopy, my first, four years ago where they did find and remove 2 pre cancerous polyps. Get your colonoscopies, kids. I’m thinking more likely it’s an ulcer. I take prescription Omeprazole for reflux, have for years, and was told it can work to not only stop the reflux but also mask an ulcer.

I can’t get in for those procedures until April, 2 months away. Hopefully when that time comes, they’ll find something easily fixable. Guess we’ll see.

But hey, at least it’s not shunt failure. Stay tuned for updates after they stick cameras in me… 🤷‍♂️

What’s your experience been like with anemia, severe or otherwise? What helped? Pills? Infusions? Tell me your experiences.

Posted in My Life (or "More About Me Than You Ever Wanted to Know") | Leave a comment

My Friend Ruth

Posted on January 6, 2026 by My Bleeding Ink

Ruth was a genuinely good person.

From the moment we met in high school, I remember her kindness. And as a disabled kid who didn’t feel too good about himself, finding kind people was essential.

Over our high school years, her kind soul continued to shine through. She’d write me letters when I was in the hospital having yet another shunt revision. She’d call the hospital and talk to my mom to see how I was doing. She’d give the biggest hugs when I’d come back. Her smile and her laugh, the way she’d call me “Gabrielie”, watching her perform in “Fiddler” and “Flowers for Algernon” night after night.

A lotta good memories over those 4 years.

We were inseparable the summer after high school. She and I and a couple other friends, “thick as thieves” as they say. Spending random weekdays and many weekends together. Going to movies, going to the park, hanging out at each other’s homes. Terrified of what the future would bring. Wondering if we’d still keep in touch in college or whatever our plans were.

And we did. For a couple years in college, we still kept in touch. We wrote letters. I’d drive up to UNC and hang out. She’d come down here, and our little friend group would do something. We stayed close.

And then, well, and then we weren’t.

Years later tho, after growing and learning more about myself, understanding how wrong I was, I said some stuff, she said some stuff, and to no one’s surprise, she showed grace and forgiveness. We never regained what we had, never had that closeness again, but I’m grateful for what we did regain.

It was lovely to see updates on her boys on Facebook. She loved her boys and her husband. She was so proud of her sons. It was always “Paul Joshua did” this and “Isaiah completed” that.

She loved her husband, she loved her boys, and she loved God. Her faith was strong. She loved the Lord and inspired so many people with her faith. From Day One, 14 years old in high school, I could see her love of God and admired how she found great comfort in her faith.

My heart goes out to her husband, Wayne, to her boys, and to everyone who loves her and will miss her so much.

Kischa has her own memories of her dear friend. Singing in choir together, sitting together on the bus while sharing laughs on the way to various choir shows. And having Sunday service at a friend’s home, with Ruth’s dad giving the sermon. She will always carry those memories with her.

Thank you for being you. Thank you for the kindness, humor, laughter, and grace you always showed me.

Thank you for your example of Christ’s love.

May your family and friends find comfort in the fact that you are with Him.

I leave you now with this song. The summer we were “thick as thieves” she and another best friend of ours were hanging out at my house, all of us struggling with what the future held, and she had a surprise for us. A serenade of sorts. She had the music on cassette (it was 1994!) to two songs, each specific to each of us, and she sang this song to me. She had a beautiful singing voice, as anyone who knew her will tell you, and she sang Mariah Carey’s “Hero” to me. It was a reminder to believe in myself. A reminder to not be so hard on myself. That I can get through things. That I had already gotten through a lot in high school, so many surgeries, complications from those surgeries, whatever else, and that I could get through other things. I can be my own hero. She believed in me, and helped me believe in myself.

It meant a lot that day and, sitting here thinking about it, it still means a lot that she cared enough to try to help me believe in myself.

Thank you for that, my friend.

(Tis been a lifelong struggle. But I’ll never forget that 30+ years ago she cared enough to try ❤️)

I am so grateful we reconnected and I will miss you, but I will always have the memories. ❤️💔

              Suzanna Ruth Simon, née Zal
December 18, 1975 – December 31, 2025

Home from college, a small group of us celebrating her birthday at her mom’s house in 1994.
She had the most beautiful, genuine smile. 😊
Posted in In memoriam | Leave a comment

That Time I Had Sleep Apnea, and Then Had Sleep Apnea (Subtitled: When My Wife Literally, Not Figuratively, Saved My Life)

Posted on August 3, 2025 by My Bleeding Ink

So y’know that thing where people say their spouse saved their life? Sometimes metaphorical or symbolic, sometimes literal.

Well this is the story of how my wife literally, not figuratively, saved my life. With a subplot about how I was an overachiever when it came to sleep apnea.

Within literal days of first sharing a bed, we’re having breakfast one morning and while we’re enjoying eggs and toast, with a side of home-made salsa (because everything I eat has to have a kick!🌶️) she says the words that started quite the journey.

“So hey. Did you know you stop breathing when you sleep?”

I’m sorry, what??

“Yeah. You’ll be snoring, then do this thing where you kinda catch your breath a little bit, like a gasp, take a few breaths in and out, and then just…stop. You just stop breathing. Five, six seconds. Sometimes 10 or longer. And then take the deepest breath in! Like a deep gasp! And you’ll do that several times a night. It’s a little terrifying. 😳”

*confused look on this author’s face*

“You didn’t know??”

Uh, no!

No idea. Not something I’d ever realized, not something anybody ever said, not something any doctor or anybody ever noted.

By that point I was in my mid 30s, and my days just were what they were. Tired a lot. Constant naps, dragging all day. Some days less than others but, I dunno, you get used to sleeping habits. *shrug*

But when she asked me, within days of first sharing a bed, if I knew I stopped breathing, it scared me! Then she brought up sleep apnea and suggested I get a sleep study done.

I’d heard of sleep apnea, I knew about the CPAP machines people would wear. But I didn’t think that applied to me.

Still, I agreed it would be a good idea to get checked out.

So I made an appointment at National Jewish, one of the best respiratory hospitals in the nation. I suppose I didn’t have to go to that extreme, I suppose any hospital would do, but I made the appointment at National Jewish.

I walk in (with my own pillow that I ended up forgetting after the test was over, dammit!) on Friday morning. She asks me background questions. Are you always tired? Do you yawn a lot? Do you take naps? Do you constantly feel sluggish?

And do you ever feel like you’re constantly sucking in air at night, and waking up?

Yes. Yes to all of those. But the “constantly waking up at night” thing, constantly sucking in air, I thought it was from bad dreams! Or in my imagination! Or, I dunno, “just the way things were.” 🤷‍♂️

I asked if that’s apnea, and she said that’s what we were there to find out.

She connects all the sticky sensors, you know the ones, to various parts of my body including my legs to test for Restless Leg Syndrome. She explained that the sensors will measure my heart rate, my breathing, my oxygen levels, just all the things. And for the first half of the test I would just try to sleep. Just my normal habits. No mask, no nasal cannula, just try to sleep. This is when they’ll verify apnea and the specifics of apnea. How often I wake up per hour (85 times, by the way! Per hour!) And the second half would be with a mask and would measure how much air pressure is needed to prevent the apnea (11, by the way.)

I fell asleep soon enough. It helped that I was exhausted. I don’t remember the rest of the night but I remember waking up with a mask on my face.

Sleep tech comes in the following morning and says we’re done. Says the specific results will take a few days to a couple weeks, but yes, I had sleep apnea. I woke up to varying degrees 85 times in one hour. And it was central sleep apnea as opposed to obstructive sleep apnea. She explains the difference, saying that obstructive is more common and is where your throat physically gets blocked from taking in air, whereas central is where your brain “forgets” to send the signal to keep breathing! And given my history of Spina Bifida she nonchalantly says, almost as a throwaway comment, “it probably has something to do with that.”

That’s it??? “It probably has something to do with that.” No specifics. I mean, “probably has something to do with that,” how????

I’d been to several national Spina Bifida conferences by that point. 9, to be exact. And I learned a lot about a lot of things. But nothing about apnea. Surrounded by experts in the field of SB, wonderfully dedicated and smart people that helped me figure out I had a learning disability I never knew about until my first conference in 2003. (Discussed at #26 here.)

But nothing about apnea. 😐 (EDIT: The comments are coming in, and apparently there were sessions where docs recommended “everyone with SB should get a sleep study” because of apnea. You don’t know how sorry I am I missed those sessions!!)

Not that I blame anyone. My generation, Gen X (with a few years from the Boomers thrown in) are the first generation of people with Spina Bifida to survive to adulthood in large numbers. Large enough numbers to be studied. Large enough to finally begin to know what happens to us as we age. They call us “Pioneers” in that regard.

Adults refer to ourselves as guinea pigs. 😐

So ok, I had the apnea. Central Sleep Apnea. “Probably has something to do with your SB.”

……..ok 😳🤷‍♂️

I’m reluctant to get the mask. I mean come on, nobody wants to fall asleep with a mask. It’s uncomfortable, cumbersome, and you feel stupid wearing it.

So I didn’t get it. Not for weeks.

K wasn’t terribly happy about it but, “I can’t make you do anything.”

But then she says it got worse. Snoring louder than I already had been, which I already knew was pretty loud! And I was even more tired, stopped breathing at night. It was all getting worse and I was exhausted all the time.

So I finally got the damn mask.

Big thing, covered my entire face. Not really, but it felt like it did. And I tried. I really tried. Different positions, different full face masks. I just couldn’t get used to it. I couldn’t sleep with this thing on my face! So after a couple months, I gave up.

If you’ve come this far, thanks. 😊 I shall reward you by getting to the bizarre part of the story.

I gave up on the mask and life went on.

Cut to May 2013. Wife and I had just made it official a month or so earlier and got married. Life was pretty great.

Then I got a headache.

Not a bad one. Not particularly excruciating. But constant. New and constant. And then throat issues. Some coughing. All this stuff that I thought would be another sinus infection that I had been prone to.

I figured I should go to urgent care before our family vacation. He’ll tell me I have a sinus infection or something, I’ll get antibiotics, and everything will be fine.

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Posted in Disability Advocacy, My Life (or "More About Me Than You Ever Wanted to Know") | Leave a comment