Tracking sleep

fairgroundThe countdown to my business trip is T-minus-4-days. And in the meantime, I’m taking care of my everyday life as best I can.

I’m seeing the neuro nurse practitioner tomorrow, and I’ll be reporting in about my sleep.

Below is a chart of the numbers I’ve collected for every night over the past month. It shows how many hours I’ve slept, as well as how many hours I napped. And it shows how I stack up, relative to my target time of 8.5 hours.

sleep-log-april-2016

I’ve been falling short consistently, apparently. I’ve been thinking I’ve been doing well, but when I see a chart, it’s clear I have a ways to go. A couple of weeks ago, I was really behind on my sleep, due to work stress and a conflict I had with a friend of mine that really got me bent out of shape. I know I shouldn’t let it get to me, but it did.

I am human, after all.

So, this is all stuff to work on. Things to stay mindful of, and not let it all get to me. And to find ways to calm myself down and chill out, rather than getting wound up and bent out of shape. Maybe I’ll put a printout of the chart beside my bed. Yeah – that’s a great idea for a reminder.

I’ve been prepping for my business trip next week, doing some shopping and also some checklists, as well as practicing my talks for the trade show booth. I’m not feeling a huge amount of pressure, though. If I do a good job, then fine. If not, I’m not sweating it. In a way, I don’t really care about the event. I care about the customers I’m going to meet, and I care about the people I work with, but I’m not personally invested in the company. Not anymore. Not since they’re selling out, lining the pockets of the people in charge, while laying off a lot of people.

So, I’m treating it like a free trip to a part of the country I’d never normally go to. Resorts in warm climates are fine, but I hate amusement parks and places where large crowds gather, so yeah, this will likely be the one and only time I ever go to this place.

One good thing is that I’ll get to see a relative I haven’t seen in over 30 years. They’re living in the area, and I’ll get a chance to catch up with them, which will be nice. That will get me off the hook of hanging out with my workmates, who just want to run wild and party while they’re away from their spouses.

I have no interest in joining them. I see them every day, as it is. I’m just going to do my job, and then come home. I wouldn’t even go to the place, if it weren’t for work. I need my sleep (see above). I need to eat right and take care of myself. I can’t get drawn into their version of fun.

So, I’m hoping my relative can provide some welcome respite from their company. It’s a plan, anyway.

In the end, I’m just looking forward to everything being over. Flying there, doing the job, flying home… and getting back to normal again.

But that all feels like a distraction from what my real focus is — getting enough sleep, so I can keep my health in balance… and also not have to use the sleep medication that was prescribed to me. My old neuropsych warned me away from it, because although it supposedly metabolizes quickly, that’s not true for everyone. And I’m so sensitive to meds, as it is, I can’t imagine my body is going to behave like everyone else’s.

The neuro visit this week is really just a way for me to check in — and check out. They don’t seem very interested in addressing the reason I actually went to see them – my balance. So, I’ll handle that myself. And never mind the pills. Or the procedures. They’re not that helpful, anyway.

I think my biggest frustration is that I go to these specialists in good faith, believing that they are willing and able to assist me. And then they just don’t deliver. Or show much interest in delivering. There are a million possible reasons, but figuring it out is not the best use of my time.

I’ve just got to keep the focus on myself, on keeping my own balance in every way possible, and keeping myself fit and capable as best I can. It’s really the only way my life is going to be as great as it can be.

And that’s my intention, really. To just have a great life — and enjoy it to the fullest.

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Collecting my notes

Looking at my symptoms from the past month or so.

Funny, what happens when you pay attention.

All the little things that seemed strange… now looking like a pattern.

Yeah, I need to see a specialist about this.

At last, an MRI…

Good news on the neurologist front… finally! I had an initial visit with a new neuro who will actually listen to me. I guess three’s the charm. The first two I went to, seemed to have a lot invested in just dismissing my issues or making them out to be just stress-related, but this doc actually sat and listened to me list out my issues.

Or maybe I was just better prepared this time. I know I was a lot less nervous, this time around, and that probably helped. And I’ve gotten more accustomed to talking to doctors, since that first visit nearly a year ago. But this doc was actually interested in what I had to say, which was pretty amazing. And they let me use my notes.

We actually managed to cover a lot of territory in the hour we spent together, and by the time the visit was up, I had an appointment for an MRI this weekend, a call in to the EEG lab for another appointment in a couple of weeks, and I had a third follow-up appointment scheduled for late next month.

Getting the right help makes all the difference, I say.

And having the right insurance does, too.

If I’d known, a year or two ago, what I know now, I would have done the following differently:

Two years ago, I would have checked around with friends about different kinds of insurance, and I would have changed my carrier when I had the chance. I would have NOT gone with the company I’ve been with for over 10 years, which is fine if you’re healthy, but notorious for declining to cover out-of-the-ordinary things, like neuropsychological evaluations and neurological testing. I would have gone with another plan that is not nearly as stingy with adequate coverage and doesn’t treat you like a moocher for just wanting to stay alive.

A year ago, I would have been more aggressive about finding out which doctors really are in my hospital’s network, and I would have insisted on seeing them, no matter what my PCP’s receptionist told me about them not being in “the network”. God, but this has been a huge problem with me, and I still come across it — being told that I can’t see so-and-so, because they’re “not in the network” that’s covered by my health plan, when they really are.  See, since healthcare has become all consolidated, lots of hospitals have teamed up to form networks of healthcare providers. And if I need to find a specialist but there’s not one at my hospital, I need to find one who is in the wider network. The thing is, my hospital is really territorial about keeping patients within their own “walls” and keeping us from seeing people outside this hospital, even if they don’t have the kinds of specialists I need. So, whenever I have said to my PCP, “I need a referral to —–,” they have typically responded, “We have doctors like that here!”

The thing is, they don’t. For head injury, it can be very tricky, finding the right neuro. Some neuros are in bed with insurance companies and they focus on proving that people really aren’t injured all that badly, so the insurance company won’t have to cover their treatment. And others just don’t get the whole head injury thing. It’s very puzzling that professionally trained medically “qualified” doctors — especially neurologists — can’t get their heads around the idea that brain injuries (even mild ones) can carry serious cognitive-behavioral consequences that can wreck the life of even a “recovered” brain injury survivor… and that these injuries need to be constructively addressed for the sake of human dignity and basic functionality. Clearly, there’s a realy need for some substantive education, there. Either that, or the people saying, “Oh, those brain injured people will be just fine,” have sustained brain injuries, themselves, and that’s what they tell themselves to avoid the pain and tribulations of confronting their own limitations. Who can say?

Anyway, getting back to the referral thing, when I would tell my doc, “No, I need to see a TBI specialist, and this is the person I need to see,” (having done my homework and asked around), and they pushed back and told me that I had to stay inside “their network” I didn’t realize that their network actually includes a bunch of different hospitals in the greater metro area, and some of the hospitals are associated with excellent medical schools. It took me about five false starts, before I stumbled upon the information about how wide their network really is. And in the process, I canceled — or just didn’t make — a couple of appointments with neuros who came very highly recommended, but weren’t “in the network” — the immediate one, that is — but really were in the wider associated network.

Yes, it is confusing.

And over the past year, I would have spent a lot more time not taking NO for an answer, when it came to securing proper care for my unique condition. I can’t tell you how many times administrative staffers gave me the runaround, put me off, treated me like there was something wrong with me for wanting to get help for my hidden difficulties. I was just so flabbergasted that anyone would question my right to take care of myself and keep myself from being jobless, homeless, destitute, and dying before I absolutely had to. They couldn’t see my difficulties, because I hid them so very well, and it took a monumental effort to bypass my instinctual tendency to downplay my difficulties and actually say out loud that I needed some help. I hate being treated badly, when I’m in a vulnerable spot, and that’s what happened, time and time again. And it took me about a year to get the hang of talking back to the administrative staffers who were totally snowing me on the “covered network” details and actively denying me access to the help that was most appropriate to me, before I finally acquired the skill to say, “Actually, this specialist IS in your network, so don’t deny me the help I need with a specialist who knows what they’re talking about.”

I also would have challenged those other neuros on their decisions to not order testing for me. The times when the docs said, “I don’t think you need an MRI or an EEG,” I would have said, “Is that you talking, or the insurance company? How much do they pay you to say that?” I would have really given them hell about just brushing me off, and I would have challenged them on their decisions and I would have called them on it.

Apparently, as a friend of mine who used to be in medicine told me the other day, it’s common knowledge that doctors are compensated by insurance companies for not ordering testing like MRIs and EEGs. Yes, docs get a kickback from insurers for not doing their jobs — or a least doing less of their jobs than they ‘have’ to.

This just floors me. I guess I’d have to show up close to dead and hooked up to a machine cranking out objective metrics for clinical analysis, in order to be taken seriously, but you know what, I’m just not going there. I’m a lively, vibrant, awake, engaged human being, and I actually like to live. So why would I subject myself to that sort of experience, just to make some doctor/insurance company happy? It never occurred to me that I was here to do their bidding. Funny, I thought it was the other way around. But then, I have sustained multiple brain injuries, so that probably has impacted my capacity for cynical cognitive shortcuts.

Anyway, now I know these few simple but critical things, and I can now act on that knowledge. Speaking of acting on knowledge, I think I’ll pay a visit to the hospital administration and discuss this disturbing tendency with them. I understand that they are trying to stay solvent, and they have to do what they have to do, to keep their books balanced, but actively discouraging people from seeking out proper care is just unconscionable. And someone needs to be made aware of this. I’m not asking them to send everyone out to other providers for help — just don’t actively prevent those of us with specific, unique, highly specialized conditions from getting the help we really, truly need.

That being said, I’m going to read up on MRI’s now, and prepare myself mentally for my appointment this weekend. I’m actually very excited to be going — I love machines, and the whole magnetic resonance imaging thing gives me a thrill. I don’t care if it’s loud, I don’t care if it takes all day. I’m looking forward to A) getting a close-up look at this machine, and B) actually getting some answers about what’s going on in my head — answers that are NOT based on speculation and extrapolation and deduction, but honest-to-God pictures.

I can’t wait!