Category Archives: Personal

Doctor, my wife tells me I stop breathing in my sleep. A lot.

Me, wearing a full face mask, attached by a hose to a Philips BiPap system
Me, wearing a full face mask, attached by a hose to a Philips BiPap system

In early October, I hurt my back, presumably while lifting my son out of his car seat (to be honest, I was lifting a lot of stuff around then, and anything could have done it).  I scheduled an urgent care appointment with my doctor after it didn't clear up for a few days, and was affecting my ability to work, and function. Becky's been bothering me for months, maybe years about my snoring problems, and that I wake up gasping for air most nights. I've always got something more important to do than go to see the doctor, but when I get hurt bad enough to make doing all those things unfeasible, suddenly, I must re-prioritize. So I was given a handful of muscle relaxers and some halfway decent painkillers, and was going to be sent on my way. The PA-C who was looking at me asked if I had any other troubles. I finally decided to say it. – "My wife tells me I stop breathing in my sleep. A lot." She said that she's not supposed to treat non-urgent issues during an urgent care visit, but this was an easy enough referral, so why not?

The next day, I get a call from Troy Sleep Center, letting me know they got the referral and asking me to come in for an appointment. I think the appointment was sometime in November. I stopped in before work and took care of that appointment. The questionnaires I answered had all sorts of benign sounding, but almost certainly a sign of something truly menacing questions (do you wake up with a headache? Have you ever fallen asleep while driving? etc). I've always had sleep problems, ever since I was a newborn, so I could answer a lot of them with "yes". The doctor comes in, asks a few questions, and schedules me for a sleep study on December 5th.

Me, wearing EEG probes and chest strap sensors for a sleep study
Me, wearing EEG probes and chest strap sensors for a sleep study

If you've never been to a sleep study, I'll tell you – it's kind of cool but odd at the same time. I came to an office building at night (parking was really nice, obviously), and was led through interior hallways within the office. They opened a door to an office, and inside was suddenly a completely different world. It looked like a person's bedroom. There was a bed, a nightstand, high pile carpet, draperies, even a TV set. And a night vision camera. And a few subtle wires draped over the headstand. The guy told me to get into my pajamas (honestly, my wife had to buy me something because I don't ordinarily do pajamas, but you don't want to go naked through an office building, so…). They came and had me follow them to a room where they set me up with all sorts of wires. After that, they hooked me to that umbilical of cords draped over the bed, tossed a pulse oximeter on my finger, and told me to have a nice rest.

I don't know if you've ever tried resting at 9pm with glue in your hair, wires attached to random extremities, wearing what feels like two seat belts across your chest… I'm not going to sugar coat this – it's not fun, or easy. I think it's ultimately worth it, but I'm not going to sugar coat it and tell you it was awesome. And for my trouble, the guy just pulls the leads out and sends me home at 5am, telling me they'll be in touch. No feedback, no nothing.

So I have to wait about a week for my followup appointment. The doctor comes in the room, asks me if I know what obstructive sleep apnea is. Of course I do. So she tells me that's what I have (duh), and that I stopped breathing between 40 and 90 times an hour. Not during the test, but PER HOUR. 40 was the overall score, 90 was when I was sleeping on my back (I love sleeping on my back, but I've been prohibited by Becky from sleeping on my back for forever, because I stop breathing in that position more than others).

2013-12-28 22.23.47
So you are having trouble sleeping. Have you tried sleeping with wires glued to your head? No sweat? Let's try it with the wires, a mask and tube, and we'll blow air in your nose!

She gives me a diagnosis of "Severe Obstructive Sleep Apnea" and sends me off for a second sleep study to calibrate the CPAP device. I get my study scheduled for 12/29 (yay, holidays!). I go through the study. it was kind of uncomfortable, but doable. I get woken up and sent on my way.  January 3rd, I come to the office, and my doctor walks into the room. He looks at the sheet, and says something along the lines of "Do you know what central apnea is?" … "Yes. It's where your mind doesn't send signals that you should breathe at all".. "Yes, that's what it is". He hands me a sleep study showing that all my obstructive apnea events basically became central apnea events instead. My body was like 'OH HELL NO' and regularly would not fight the pressure of the machine to exhale.

Damn, and here I thought I did good. I mean sure, it was better than nothing at all, which is scary to think about, but it was clearly not tolerated. My diagnosis was changed to "Severe Complex Sleep Apnea", and sleep study #3 was scheduled for last week. That time, I used a BiPap, and the following Monday, I got a call from my home health care company telling me they were going through insurance company pre-authorization for my BiPap unit (the doctor hadn't called me yet). Today, I was given the results (apparently bilevel pressure of 12 and 9 was perfect, with an AHI score of 0), and picked up my unit (which is considerably more expensive than a standard CPAP device).

So you may be wondering: "Hey, what is a BiPap? I've heard of CPAPs, those just blow air into your nose all the time to keep your airway open, but I've not heard of a BiPap before."

A BiPap works by detecting your breathing cycles. Where a CPAP mask basically leaks any air you're not currently breathing in, and normal people can just breathe against the pressure, I can't. The BiPap detects that I'm no longer breathing in, and switches the pressure to a lower value – enough to keep the airway slightly open, but not so much that I can't breathe out. It then waits for negative pressure in the mask, and switches the pressure up at that point. If I fail to breathe in a certain amount of time, it kicks on the pressure anyway, assuming my airway is blocked, or I'm undergoing a central apnea.

I'm really excited tonight. It may be the first time I've slept well since I was 15, when I first started complaining to doctors about being tired all the time, and the doctors checked every possible thing, but never referred me to a sleep doctor.

How do you feel about drugging your kid?

It's no secret that our son has sleep problems. I had (hah! okay, so HAVE) severe sleep issues, and he does too.

We followed all the rules. Feed him early, give him a pre-bed snack. Bathing (not generally a relaxing experience for anyone around here). Warm "milk" (for us, it'd be rice or almond milk, as he's got casein and soy allergies). Making the whole house quiet before bed. Reading stories. Withholding nap time. Waking him early. Tiring him out.

Generally, he'll go to bed around 1-2am without assistance. Unless we have a long, dark car ride (for me these days with severe complex sleep apnea, these are really dangerous to do, so that's not happening – my sleep doctor's directives currently state that I should not be driving late at night) he'll usually be up and active the whole time. I often joke that the US could be independent of fossil fuels if we find a way to tap into his energy.

So after discussions with his doctor, we use an as-needed dose of Melatonin at night (we call them 'Magic Gummies', as they are in gummy form, like his vitamins), for about a year and a half now. I also use it periodically – while I have little trouble falling asleep at the wheel, I have problems falling asleep at night – in part because I use so much caffeine to stay awake and effective during the day. Yeah, in my case it's a self destructive loop, and I'm seeking medical intervention for my complex sleep apnea (3rd sleep study tomorrow, maybe it'll be the one where we find the right machine and settings for me!). But when I was a child, I had more or less identical sleep issues, so it's not JUST the caffeine.

Anyway, so it works great, and his teacher, aide and therapists can tell when he's been using it, and when we've had to get him to sleep naturally. But that doesn't stop people from judging us for using it. People give us looks of disapproval, or ask stuff like 'do you really have to drug your kid?' or *insert anecdote about someone else here*, then some judgmental comment about drugging him. Not just acquaintances, and friends, but family. It sucks, and it's stupid, and hurtful.

We've always treated it as a privilege, not some sort of punitive consequence. In fact, if he's been 'bad', we make him do something good to redeem himself in order to get one – like pick up a toy, or get mommy a glass of water, etc. They don't have a negative stigma attached here. We've never overtly told him what they're for, but that they're a special treat for 'good boys' on 'special nights'. We've gone out of our way to avoid saying what they're for, lest he protest taking them because he wants to stay up and play.

Lately he's been kind of warily asking for them proactively. I told Becky I suspect he knows what they are for and recognizes his need for one. She was skeptical, but tonight I asked him offhand – 'do you know what the magic gummies are for?'.

He says 'they help go night night'.

Damn right they do, kid.

My kid knows he needs help to fall asleep, and actively seeks it. I couldn't think of a more powerfully obvious statement of self advocacy than that.

So how do I feel about drugging my kid? I feel great, because I know I'm helping him satisfy a basic human need that he is now directly articulating his need for. I feel like our choice to give him this powerful tool to help him sleep has helped him behaviorally, educationally, and has soothed him when he was tired, sore and weary. And that our feelings that he would approve of the use of them if he understood what they were for have been validated.

I'd be off to take a magic gummy myself, but due to my upcoming sleep study (I'll have a whole post on this mess soon, once it's completely dealt with, because boy, it's been a long, strange ride) I'm not supposed to be doing that, so I'll go lie down and hope sleep comes quickly. Goodnight, all!

A helpful guide to my elementary school

So I wanted to write a piece for Autistics Speaking Day. I wrote this blog post that was well over 2100 words, and spoke to the idea of making sure that if a child is different, don't be their first bully. It went far deeper into things than I really feel comfortable talking about in public (not so much about my parents, who despite their faults are/were generally okay, but more about the absolutely hellish experience I had in elementary school – kindergarden through 6th grade. It spoke about involuntary restraint, seclusion, bullying (just about as much by the adults and the system as the kids), acting out violently, and wandering.)

I decided instead to publish this. I drew a helpful map of my old elementary school for non-typical children like I was, so they can easily navigate their days like I was able to. It's not really comprehensive, but it's a start.

A helpful guide to my elementary school

(Needless to say, I know exactly what to be hyper vigilant for as my child goes through school. And I know that my child's school nowadays has acceptable procedures for handling many of the issues I dealt with as a kid.)

Progress updates – swimming/iep/fbi

Swimming:

Today, I saw Billy swim roughly 10 feet while treading water and keeping his head dry. I'm super excited about that.

Last week he was playing around near the edge of the pool at the YMCA and fell in. He swam back to safety and pulled himself out of the water. I'm also super excited about that.

IEP:

Survived it. It wasn't earth shattering. I made a reasonable size deal of pushing for a outreach to the local first responders to have a meet and greet where the students can practice their social scripts, and the law enforcement/EMS/Fire can learn how to deal with various special needs first hand. They were all very interested in this idea. Let's see if that dog hunts.

Got the autism paperwork submitted to Henry Ford, let's see what happens there.

FBI:

Got a batch of intact computers back from the FBI. Excitedly awaiting the rest.

Advocacy:

Just wanted to call attention to this page as well: stophurtingkids.com

My school used physical restraint in situations where there was no risk of harm, and often secluded me well into middle elementary. I spent entire afternoons in hallways or locked/unlocked rooms off the library in school, without adult supervision, because the adults lacked proper training on how to deal with children who had disabilities that caused them to be disruptive, or to 'not fit in in the classroom environment'. As my mom said "if we hadn't fought for your rights and for inclusion, you'd have spent most of your educational career hiding curled up under the principal's desk, locked in a hallway somewhere, or god knows what".

It's always in the back of my mind when dealing with schools. I mean, having giant custodians manhandle you and do prone takedowns to keep you in your hallway seat has an effect on a 1st-2nd grader. I have recollections of them experimenting with mechanical restraints too, but I'm pretty sure that didn't last long.

Anyway, these practices need to end in the United States. Children are being seriously injured or killed from improper restraints, or improper supervision. And it has no educational or therapeutic benefit.

Craft Herpes

So today Becky was trying to make some sensory bottles (as featured on MamaOT's blog here). I attempted to provide assistance in my usual ways, contributing useful advice like 'the easiest way to remove the label is WD-40, don't waste your time with scrubbers and soap, that won't work, you need a solvent'. And then material assistance in spraying them down with WD-40 outdoors. (insert regrets for opening my fat mouth here).

So when we got home tonight, Becky showed me an attempt at an earlier bottle showing the glue and glitter (or as it's known around here, "craft herpes" as it is easily spread, and tends to leave a very obvious visible sign of infection, and is incurable/irremovable). It had clumped together in this horrid goopy ball. As I'm in "problem solver" mode, rather than simply share the feeling of failure and reassure her that "next time it'll go right", I leapt into action doing what anyone would do, trying to break up the clump. After shaking it like a madman, I opened the lid and jammed my finger into the bottle.

Now, if you're sane, you're thinking "WHY IN GOD'S NAME DID YOU JAM YOUR FINGER INTO A WATER BOTTLE FULL OF GLITTER AND GLUE?". And if you know me, the answer is of course "Because Paul".

And when my finger ended up glued inside the neck of the bottle, because well, glue, I did what any normal person would do under the circumstances – panic and try to get my finger out by any means necessary. Which, because Paul, ends up meaning "covering myself, and my laptop in sticky glitter".

Then when trying to figure out the mystery of why ours was less awesome than the OT's bottles, I asked Becky to hand me the glue to make my own attempt. It too clumped (though I did not yet put in glitter). That's when I saw the glue – "Craft Glue"… "Waterproof"…. Water and hydrophobic glue don't mix. And of course, because I poured it out into the sink, there was a huge glob of hardening glue stuck to the sink. I managed to get a majority of that cleaned up, at least, and thankfully it didn't go down the drain.

"F* you, man"

This weekend, I was at Eastern Market, I was approached while enjoying an orange with my son and uncle by a guy. This happens all the time in eastern market, there's always someone circulating a petition for one reason or another.

So anyway, this guy interrupts our orange related bliss to talk about linking liquor licenses to not having expired food on the shelves, if the liquor store also sells food.

I stated I thought liquor licenses were stupid anyway, and didn't like how complicated they already are, and how they shouldn't pass laws making them more complex, and frankly, I don't understand why we require a special license to sell alcohol at all.

He agreed (!) saying that he didn't like liquor licenses either. So I asked him why he was making an already generally absurd process even more complex, especially since selling expired food is already a health department violation, and this really adds nothing but complexity to a process I already didn't support.

He explains how it would just force people to carry fresh food. I asked how, since they already were in violation of the law and they did not care. And again, that I didn't like that a special permit is required to sell alcohol.

So he started getting agitated with me about it, and I broke it down for him:

"You want me to support making a license I think should be abolished specifically because the rules surrounding them are already onerous and often absurd MORE COMPLICATED, in order to stop people who are violating the law by creating an additional law that they'd be breaking.". Then I just stare at him.

He walks past me and screams "F*** you, man" in front of me and my kid. I yelled "stay classy" as he walked away.

Am I missing something, or was that guy just crazy?

The master plan to be debt free is coming into place…

Failure is not a single, cataclysmic event. You don't fail overnight. Instead, failure is a few errors in judgement, repeated every day.
— Jim Rohn

Sometimes it's harder to be honest with yourself, than it is to be with others.

Ever since 18, when I began living independently, I learned a lot about putting myself in financial peril the hard way. Between numerous (likely actionable) missteps by employers when compensating me in my earlier years, misuse of credit, failure to plan ahead for my savings, failure to pay my bills timely, failure to stay organized, failure to file taxes timely and keep proper accountings of things, and unexpected expenses, I've put myself in quite a perilous place.

I make more myself than the average income of my neighborhood. But a few months ago, I was so far behind on my bills I was struggling to keep the lights on, and was only weeks from foreclosure. I didn't want to talk about it. I still don't. You write hardship letters to banks, and you don't know what to say. It's not like I lost an arm in a machine shop and lost my income, I made a ton of poor choices, poor organizational planning, and didn't keep track of what bills I was paying and when they were due. I was often a month behind on all my bills. I had only $500 in savings. When unexpected expenses came up, no way I was going further in debt, but I always thought "I can pay this, I have money in the bank!" and then a week later, I was all "oh crap, I forgot to pay DTE. That's why my power just went out.".. yeah.

2 years ago I locked all my revolving credit cards except a small $300 limit one for emergencies in a firesafe. I haven't touched them since. I cut my debts in half by focusing my efforts on paying those down as aggressively as possible. But I wasn't keeping track of things well, and more than a few times got more aggressive than I should have, and put money toward debt retirement I should have put toward normal bills. Obviously this was an untenable plan. I sat down and realized if I didn't put some serious math toward things and figure out a plan, I'd lose everything I worked for, and worst – continue to work my ass off and have nothing to show for it. I'd get massive bonuses, and dump them into paying bills.

I realized between jacked up penalty interest rates as high as 30% on balances as high as $5,000, and late fees, that my previously affordable plans had become a massive mess of unpayable penalties. I was getting kicked when I was down from every possible direction, and was liable every month for more than I made, despite the plans being affordable only months before. When you fail to pay one card, all the other cards take notice. They crank your limits down, they jack up your interest, and when you pay late on them, WHAM, 15% revolving interest just became 30%. Your budget to pay this card off in 3 years? No longer makes the monthly minimum payment anymore, which by the way  now has a $35 late fee.

After putting my head around every bill I was past due on, every revolving credit line I have, and the rare few collections I had, I realized I need a comprehensive plan. And then my car insurance doubled. WTF.

Today I got the fedwire transfer from a massive 401k loan (at 4something% interest). My first impulse when I saw the amount in my bank, combined with my biweekly paycheck, was to run to tijuana and say screw it all. But of course,  my debt will be 100% paid off in 5 years, and I'll save thousands in interest. The money I'm saving will be going directly into savings to cover rainy day funds, and my goal is to build up 3-6 months of pay in buffer money, as the financial folks always recommend.

I know 401k loans can be risky, but I read the risk carefully, and fully understand what I'm doing. By doing this, I've saved literally $500 a month in late fees, excessive interest, and other costs. That will obviously help when it comes to savings. I'm going to leverage the situation to try to refinance my horrid sub-prime 8.25% mortgage (shouldn't be hard, they said I could before if I were caught up in payments (as of tomorrow, I will be current to 4/1/2013 – I am current on mortgage payments on day 1 of the month for the first time in 3 years!) it's not like my debts disappeared, they just all went into one place). I see the light at the end of the tunnel.

And esurance cut my insurance rates in half for the same coverage. So there's another $150 a month I can put toward savings. EXCELLENT.

And when I have a buffer, I can safely put all my bills on autopay, and never screw them up again.

Things are coming together nicely! For the first time in 3 years, I'm looking forward to opening quicken, my online banking, and I'm feeling better about answering numbers I don't recognize on my cell phone. My credit score dropped 200 points this year. It's at 550. I have a long ways to go, but I'll get there. I can do this.

Home for the holidays

It's 8:32am, and I'm sitting in my chair winding down from my day. I know you're thinking – you're up at 8am and functional? What gives?

Of course, I'm still up from yesterday. I'm about to go to take a nap in a few minutes to try to adjust back to the ways of the followers of the daystar today, and hopefully get in my Christmas shopping. Starting at 7am today, I'm off on vacation until 9:30am on the 31st, and then I'm only there for a few hours, then I get the 1st off, then I'm back to work for a full day on the 2nd.

Billy's vacation starts today, and is a bit longer than that.

I'm a bit apprehensive about the lack of structure. For both of us. There's going to be some winds whipping us around a bit, some holiday events here and there we have to attend to, but for the most part, we've no structure in our days. This has the potential of being awesome, or getting us into trouble. Billy got pretty weird on Thanksgiving with the lack of structure. He was getting very confused and upset about why there was no school and no "apple box day", which is how he refers to our weekly fruit and vegetable delivery service (in part because I use an apple in his visual schedule to indicate it's coming today, and it's been a tradition since he was born that he interacts with the box upon arrival, and he's been snacking on it immediately since he could have solid food (in fact, his first solid food ever was a result of him sneak attacking a blood orange I was eating from the box – he bit it right out of my hand when I wasn't paying attention).

We'll have to play this by ear. I'm hoping I can find some way to give him a bit of structure. I just need to figure out how.

Uh wow. The second CD from the FBI arrived today…

Ok, the second CD from the FBI arrived today. I just popped it into the drive and haven't read it yet.

When I guessed there were things beyond the original case in my file, I didn't quite expect the stuff I found.

There's an entire CD they've refused to provide based on a second grand jury investigation I didn't even realize happened.

I'm starting to figure out why they've stalled releasing my stuff back to me. Not that I think it's justified, but their odd responses back in 2005-2006 make more sense in context now. Ugh.

 

More to follow. Sorry it's vague, I haven't even read everything yet.