Flunked my sleep study

I flunked my sleep study :(. Apparently some degree of sleep apnea, which surprised me–and Jalan, who sleeps next to me. That meant I couldn’t do the daytime test, but apnea is more easily treated than narcolepsy.

Last time I had a CPAP, I couldn’t tolerate it, but there are probably improvements since then. They’re a PITA, but if it helps daytime sleepiness, then worth it. Maybe we can get a mask that can be modified with locking straps…

I don’t know the degree of apnea until I see the relevant neurologist.

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Posted by on January 27, 2015 in Health


Long Health Update (two steps back, one step forward)

I’ve been slow to update while things with my health have been changing rapidly. So here’s a big update.

tl;dr: CFS symptoms have been worsening, there have been other unpleasantnesses, but they have no serious long-term consequences. There are also new diagnostics going.

The good news about things I hadn’t talked about: The vertigo is receding and the chest pains are almost certainly reflux, not new heart problems. Not that the return of reflux is itself good news, but could be worse.

The bigger good news is that there are new diagnostic avenues. I’ve got an aggressive new neurologist who wants to be sure whether there’s anything underlying the Bastard that might result in treatment (novel idea!) or even different management.

More good news is that I’m calm about all of this. There have been ups and downs on that, but I’m taking them REALLY well, if I do say so.

And I’ve got a spectacular healthcare team here.

About two months ago, I hit a major relapse in CFS symptoms. It’s been as bad as it ever was, even at the worst of the diagnostic year. That’s been in a downward feedback loop with cardiovascular fitness, as I’m even more sedentary. And gaining weight again, which contributes to the vicious cycle. There was a two-week depressive swing in December, and those are quite rare these days and don’t usually last so long.

Two weeks ago, I went to the ER with chest pains.

NB Never have a medical emergency when flu is epidemic.

We were there for about 30 hours without ever getting admitted — finally got a bed in the observation unit at 2am, having been in the ER since 9:30 the previous morning. Long story short, it appears to be a resurgence of GERD (acid reflux). I saw my cardiologist (who seems to think I’m really interesting) yesterday for the ER followup, and there’s nothing we didn’t already know about with my heart. He also said I can start building up again on cardio, which I’d been reluctant to do before that appointment.

Now, a month ago, I’d seen the new neurologist. The original point was to follow up on the Mayo’s suggestion that there might be an underlying mitochondrial disorder. The test for that is a muscle biopsy, which they couldn’t do while I was on anti-platelet meds after the stent. There was no rush, as it’s not treatable either, but the management in terms of things like exercise might be different. The neurologist thinks mito is possible, but has a preferred hypothesis of a combination of narcolepsy (or similar sleeping disorder) and small fiber (autonomic) neuropathy.

So, since then, I’ve had yet another EMG and nerve conduction study, which failed, again, to find any motor or sensory neuropathies. He also took two samples for a skin biopsy, which are currently at an out-of-state lab being tested for the small-fiber neuropathy. I have a sleep study scheduled tonight and a multiple sleep latency study tomorrow — basically, I’ll be there 9pm to 4pm. Friday, I see the neurosurgeon to set up the muscle biopsy. It’s done at a hospital under twilight drugs, and also goes to an out-of-state lab.

In mid-February I meet with the intervention cardiologist to discuss repairing the congenital problems in my coronary and pulmonary arteries. There’s no new urgency to this, but Jalan’s vacation schedule is such that this June is the ideal time for me to have recovery. They might be able to do it via catheter, which is a trivial recovery. I’ve been down that road more than once. If not, they go between ribs, which is not trivial. But the cardiologist told me this repair does not require cracking the chest, which is great news.

Oh, and randomly, I’ve had vertigo since Thursday morning. Urgent care doc said there was an inner-ear irritation, but it appears to be nothing persistent. I just haven’t driven, and showered when Jalan’s been home. It seems to be mostly over.

After all that, there’s room for getting back on an upward trajectory, if it just means I climb the stairs for cardio on the cold, gray days while all the tests are going. This has been an unusually dismal Winter for where we are, but we’ve got a broad-spectrum light set up in our room, which is helping a great deal.


Posted by on January 25, 2015 in Health


Overly familiar D/s usages

This is most of a Twitter conversation I had with MintyBaubles this morning about what I consider overly familiar D/s terminology among people not in a negotiated relationship. It’s a pet (NPI) issue of mine.

Posted with permission.

Screenshot 2014-11-10 06.43.04

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Posted by on November 10, 2014 in D/s, Daily Life, General / Overhead


Pictures of the dragon cooking

The stove made the kitchen hot! Honest!

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Posted by on October 16, 2014 in General / Overhead


Orgasm control: Our next steps

Today is day 22 since my last orgasm, which at the time triggered a three-week “sentence” of denial. This morning, we had a long conversation about keeping me in a state of ‘want’ without relying solely on denial–which is the most reliable way to keep me wanting an orgasm, but, among other concerns, can take the day-to-day control away from Jalan. Neither of us wants a situation in which she doesn’t stick to her word.

The thrust (ha!) is that orgasm control of any kind isn’t much fun for either of us unless I am aware of it as continuously as possible. And that usually is going to mean wanting to come. So we both want me to feel any deprivation or other loss of control.

Jalan told me today what we’re going to do this week and see how well it meets her goals as an ongoing plan.

In the morning, before she goes to work, she’ll write on my cock, with a Sharpie or some such. (Presumably this means I’ll start showering early, too, instead of waiting until she’s headed out.) Sometime during the day, she’ll communicate to me whether she wants the writing pristine, smudged (for example, by edging myself), or washed away by cum when she gets home. Since I’m always naked when she comes home from work, as part of our new rituals, that will also be time for inspection.

So I’ll be thinking about her control of my orgasms at least three times per day, and likely quite a few more between her leaving and her sending me the directions. And I have no assurance at all that I’ll get to come this week, until and unless I get the last of those messages.

This meets a lot of the same needs for me as “declared” denial: I know she’s actively controlling my orgasms every day, without the feeling (that neither of us likes) that there’s some default status where I get lucky if she wants me to, but it’s not necessarily on either of our minds any given day. On her side, it keeps the control right where she wants it–in her hands at all times–and keeps me keenly aware of that control and that I am at her mercy.

Then there was teasing.


Posted by on September 21, 2014 in Chastity and denial, D/s


Health updatery, with big things ahead

I’m complaining on Twitter about having a post-air-travel cold, so that made me think to post an update here.

The Chronic Fatigue Syndrome is, overall, pretty well managed. ‘m getting in regular light physical activity. I’m eating fairly well. I’m calibrating how much I can work, and I’m developing a more healthy (for lack of a better word) toward work.

It seems I can target around 15-20ish hours per week of work/business stuff without much risk of relapse. But part of avoiding that relapse is stopping work for the morning or the day, or even the week, when I can feel that I’m pushing myself to get through something. I take my naps when I need to. I stop and watch TV or read a book when that’s what I feel like. Per Jalan, I take a lunch break, and I spend an hour or two most weekday mornings in a coffee shop. There are certain kinds of work I’m permitted in the coffee shop, but otherwise it’s a gradual entry to the day and taking some time for self-care. This also helps keep me from going stir-crazy now that she’s working long hours. I’m prone to cabin fever.

15-20 hours doesn’t sound like a lot to me. It does help me realize that if I had any other career than the one I do, I’d be filing for Social Security disability. There’s no doubt or equivocation about that. There is no full-time occupation I could do. But I also, as I’ve talked about recently, have the good fortune to have the skills to bring in a decent income in those 15-20 hours (some weeks more like 10, some more like 25). It does mean I’m shedding any “donated” time. I can’t afford the opportunity cost to work on a project that may someday might we hope lead to funding. And that’s a good thing to realize. I’ve been behind on my commitments since the relapse at the beginning of August. I’m slowly catching up, but I’m being very careful about making new ones.

But on the upside, I took a work trip this week. I flew across the country to give a presentation at a conference. It’s the first time I’ve traveled for work since getting sick, and I used to go around the globe. It’s only my second air travel since CFS, and the other was for the Mayo Clinic. It wasn’t the best presentation I’ve given, but it wasn’t the worst, and I attended some other talks while I had the endurance. Now I’ve got a cold and I’ve napped around eight hours today, but totally worth it. For the rebound in self-concept, if nothing else.

All that said: One of the possibilities for my fatigue syndrome isn’t “classic” CFS, whatever that would be, but a disorder in mitochondrial metabolism. The test for this is usually a muscle biopsy, which is typically taken from the bicep. I haven’t done it yet because I was on anti-platelet meds through this July after the arterial stent last year. No responsible doctor would take the risk of doing that biopsy unless it addressed something acutely life-threatening. But I’ve scheduled an appointment with my internist for this week to talk about setting up the consult at the Muscular Dystrophy Association clinic at the local hospital to see how we’d go about it. So we might learn something new.

Part of the timing of this, even though the CFS is “managed,” is because I’ve also realized I need to think about scheduling heart surgery to correct a congenital defect. The defect was found in the Summer of Diagnostics last year. It’s not causing any problems yet, but will eventually if un-addressed. So I might as well get it done while I’m in as good shape as I am, and I’m forecasting to Jalan’s next significant vacation availability to help me recuperate.

And, of course, no biopsy again if I were to do the heart surgery first.

My mood about all of this is good. There’s probably not much that could be done about a mitochondrial disorder, but it could affect the management strategies to have a more precise diagnosis. That, and I’d (finally!) know which specialists to be working with.

There’s a lot ahead of me, but there’s also a lot behind me, and I’m in good spirits. Except for the damned cold, but that’s the least of things. It feels weird in some ways to be upbeat about heart surgery, but I’ll take “upbeat” over “depressed” any day of the week.

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Posted by on September 14, 2014 in Health


Photoset from the last post

I posted some photos to Tumblr from the scene I talked about last time.

Need I say NSFW? Doubtful.


Posted by on September 7, 2014 in Chastity and denial, D/s, Play

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