Hello officer – the tremor you’re seeing is not fear. It’s fatigue.

I recently had to fly halfway across the country for a work commitment. I had to fly out early, which meant I had to get to the airport really early… and that meant I had to wake up really really early.

Not much fun, to be honest.

But I did it.

I hadn’t been sleeping well, for several days prior to that – I was getting maybe 5 – 6 hours a night, which is no good. But that’s what I had to work with, so… that’s what I worked with.

The drive to the airport felt like it took forever.

And just getting from the parking garage to the terminal was another slog. One of the wheels on my carry-on was “wonky” and it vibrated really loudly, as I pulled it along. Not the best thing, when your hearing is already over-sensitive.

Anyway, by the time I got to Security, I was a little shaky. I was operating on maybe 2 “cylinders” (out of a potential 4), and I hadn’t had my full breakfast like I usually did. I was off balance and out of sorts, and when I handed my boarding pass and ID to the security officer, my hands were shaking a bit, like they do when I’m overly tired.

The officer gave me a look, and I tried to exchange a few words, but I was “off kilter” and my voice was shaky. I started to get nervous, wondering if they were going to alert others that I was a sketchy character. They gave me another look, and I just shut up. I sounded a little drunk and discombobulated, and my hands were trembling. That’s never a good sign, when you’re trying to board a plane. So, I did my best to gather what dignity I could and just moved on to the x-ray screener – hands over head – and then walked on through.

Fortunately, my luggage made it through without incident. At the last minute, I remembered to pack only small bottles of liquids and creams. That was a last-minute change, because I was going to take full tubes of toothpaste and a special skin cream I need to use for my beat-up hands. At least I got that right.

In the end, it all turned out okay. But I really hate that feeling, when my neurology is acting up on me, and I’m interacting with someone who can flag me as a risk, take me aside, pat me down, possibly strip search me (worst case). The worst case didn’t happen – not even close. So, that was good.

And the trip went pretty well, from that point on.

So it goes.

And so I go… onward.

Getting new doctors

The tremors in my right thumb and hand have been getting more noticeable, lately. The numbness and tingling on the left side of my face has continued,and it’s now just a part of my day-to-day.

And the neuro I was referred to, has not managed to get their insurance situation sorted out. I have been waiting for three months for them to get their act together, and still it hasn’t happened.

Do I feel comfortable turning over my neurological healthcare to someone who is resigned to let red tape block them from practicing?

No.

What will happen if I am in real need of specific types of care, and they cannot get their act together to provide the help I need? What then?

So, I need to find a neuro who can check me out for this tremor business.

And I also need to find a new PCP. The one I’ve been seeing has been good for getting me basically squared away, but they have been really lax with some things and have not followed up with as much engagement as I would like.

It’s not like I’m sick a lot, but when things do go wrong, I need to know I can count on someone to be all there — 100%. It’s my health and well-being. I don’t think it’s too much to ask.

But first things first. It’s pretty overwhelming for me to find a neuro, and the anxiety around getting a new PCP is pretty intense for me. So, one thing at a time.

When I do start talking to doctors, I’m going to take a piece of paper to them that tells them what my goals for care are,and how I need them to help me get there. I have no guarantee that they’re going to ask that, themselves, but that doesn’t need to keep me from discussing my intentions with them.

And keeping it simple and straightforward is the way to go. Even if it completely oversimplifies everything. First I need to get an “in” with them. Don’t overwhelm them before they have a chance to get to know me. When I deluge them with all my concerns, I come across sounding like a bit of a hypochondriac, because who the hell could walk around feeling like I do, being as functional as I am with so many issues?

Or maybe the issues are all in my head, and I’m malingering… looking for attention.  Whining and bitching and being a little cry-baby.

Whatever.

Actually, all I really want from a doctor at this point is some diagnostics to make sure the tremor and numbness in my face isn’t something bigger and badder than it seems to be. I just don’t like getting “caught out”. I want to get a head start, if at all possible, and get ahead of my issues before they get the best of me. I’ve lost too much time to “wait and see” approaches.

Time to get moving. Tomorrow I start calling around again.

Onward.

Happy Anniversary, everyone!

Seven Years Ago Today, I started this blog

Hey, today is the anniversary of this blog. Seven years ago today, I sat down to chronicle my “adventure” with TBI recovery. I wasn’t sure where it would take me, but all this time later, I have to say it was probably one of the smartest things I’ve ever done.

And thank you for joining me – all 296,885 page views and 4,550 comments. 🙂 Thank you for your ongoing support! I am truly grateful! Indeed, no words can say.

Blogging here has helped me to get out of my head — and my apologies to those who grew weary of hearing me bitch and moan about every little thing. There’s been a lot of wailing and gnashing of teeth in these pages, over the years. But eventually I did figure it out. Took a while and wasn’t easy, but I got there.

Anyway, things are moving on the neurologist front. Sitting down with my neuropsych yesterday, we walked through the different symptoms I’ve been dealing with, lo these many years. Many of them date back some 35 years — the tinnitus, in particular — while some of them are newer. The headaches have been a noticeable vexation to me since 2008, though I can’t say I never had them before that. Some of them started to be a problem after my 2004 TBI. Some of them, like the facial twitch and one-sided hand tremors, are fairly recent, becoming more noticeable and concerning in the past year or so.

I’m not one to complain, and I don’t want to draw undue attention to myself, but one of my relatives died of MS, another died of a brain tumor, and I had a friend who had Parkinson’s and did not get diagnosed for a couple of years — and they lost valuable time in understanding and treating their condition.

If I’m dealing with something bigger than your standard-issue First World problems of carpal tunnel and sleep deprivation, I need to know sooner, rather than later. The thing that really took its toll on the friend with Parkinson’s, is that they didn’t deal emotionally with it, and they were in resistant denial for quite some time… and they are NOT in good condition, right now. It’s alarming, seeing them as they are. Truly alarming, compared with how lively and engaged and into everything they once were.

I’m not saying I have Parkinson’s or MS, or anything like that. But TBI increases the risk of Parkinson’s, so it’s in the back of my mind. And if there is even the remotest chance of any of the above (or something else), I need to rule them out, before I go on my merry way.

For the record, I’m fine with a benign tremor. It gets worse when I’m tired, so it’s an ally in a way. Those sorts of things act as a sort of barometer to keep me honest. And if a good night’s rest will do the trick, then I can deal with the inconvenience.

Anyway, I’ve got to go get my car serviced. Off I go…

Onward.

 

 

Sometimes, you just gotta BE

I had a very “unproductive” weekend, in terms of my projects. I have not responded to a bunch of messages, and there are people waiting to hear back from me. I had a lot of big plans — and a big list — but today, Sunday evening, I have sore feet, an achy body, and a lot of work done in my yard that needed to be done.

Well, at least the neighbors should be happy. I mowed all around my place — front and back — and I cleaned up my driveway. I also cleared out the raspberry bushes that had grown all up in front of my house, that made it look a little like crazy people live here. I decided to just let them grow, this year, to see if they would be productive. They produced some berries, but a lot more headaches, than anything else.

Now my house looks like normal people live here, which I suppose is good. One of these days, I’m going to build up the front garden with some edging pavers, fill them in with good topsoil, and raise the bed of my front garden nicely. I’m also going to clearly number the house on the raised garden. Right now, the number on the house is hard to see and the mailbox is obscured by the neighbors’ box.

All projects for the future.

Part of me feels a little uncomfortable, how much I did not get done. But the weather was fantastic, and all this needed to be done. Plus, I made some excellent headway in dealing with my chronic pain. I found some new exercises that may help me. I just started them, so we’ll see if they work, but I’m very hopeful at this new approach.

We shall see.

I think a lot about how I want my life to be. Certainly, that’s not how it is right now. I want to be able to work on the things that I know need working on — not something someone else tells me to do. I have the ability to see for myself what needs to be done — and I need the kind of life that lets me do it.

I am also rethinking the busy-busy weekends approach I have taken for many, many years. I need to break up my busy-busy work into more manageable pieces during the week, and leave the weekends open for me, so I can breathe and catch up with myself — and my sleep.

Pushing myself all week long and into the weekends… well, that just doesn’t work. It used to, but it doesn’t anymore. I’m developing tremors, I’m so tired. I need to take breaks. I need a change.

So, I’m making it. The busy-busy stuff isn’t going anywhere, and I can handle it during the week. The weekends need to be for me. So be it.

Holy crap, it feels good to decide this and say it out loud.

Onward.