still here

 

My patience is being dearly tested nowadays but I seem to be handling things so much better than I ever have, maybe I'm unlocking another wizard achievement or something.

People talk about wizard level in games and hacking and politics and whatever. Real wizard is when your body and your life are at stake, and it's literally your whole life.

So this week continuing in physical therapy, I'm still 6 visits away from assessment but we kind of did a stop and assess for a few minutes. We're changing direction, goals, and possibly time frame. Apparently I've got a unique enough situation that they may be able to restructure policy requirements and protocols around extending into possibly 30 total visits (I'm currently set for 18) in an effort to get me past needing to rescue with cortisone shots and possibly even some kind of surgery.

At this point I'm responding well but my severe fibromyalgia keeps triggering and creating kinks in the work already done, so progress went super sideways over the last week and a half. Living with a 40 year old injury isn't going to heal overnight, and I lived with compensating past it so long that we're trying to retrain all the muscles around my face now, not just my jaw. Just as I forced myself to walk again after the accident and therapy discovered I was covering really well for not walking correctly and I had to relearn, so also am I having to relearn how to use my jaw correctly. This has affected chewing and speaking for years, has even impacted swallowing on rough weeks, and it's looking like doctors dismissed me continually with antibiotics and TMJ without ever looking deeper.

The last week or so has felt like I'm peeling back the layers of time and reliving the car accident all over again, but in such extremely slow motion now that I'm reliving all the original pain and then some. Nerve bundles are being released from compression between my jaw and tongue, under my jaw and ears in the glands, and in and around the base of my skull and the cervical processes next to it. The migraines have been off the wall.

But I can't complain. The amount of pain I lived with for many, many years was far worse than this loads of times. My worst migraine in 2004 lasted 6 weeks. I slept sitting up with my head delicately propped a certain way and barely got an hour or two of sleep tops at a time that whole 6 weeks. Most of my adult life I've not been able to sleep more than 2-4 hours a night. Last few years it's been hitting 5 and 6 more often (started chiropractor in 2007 and CPAP in 2016, which have both helped a little), and once or twice a month nowadays I'll actually hit 7 or even 8. You'd think that would help, but laying there so long in one position tends to make the headaches ridiculously worse.

I'm just glad I made it this far. I should have been killed in that wreck. I was so ill in my 30s that I prayed every day to see my kids grow up. My 40s were pretty rough, even beyond rough. My 50s started looking up as I grit my teeth and got all my stuff figured out and made a plan, and now I'm just simply sticking to plan and hanging on by my fingernails through a strange roller coaster that I'm almost too tired to feel or care about any more.

But I'm still here. And I think I'm finally getting a handle on life, the universe, and everything.

The next few days, maybe about 2 weeks, are going to be extremely busy. I may not be anywhere visible very much, might try to say hi on twitter, not sure if I'll have a chance to keep up with anything. The world is going to do what it's going to do. I'll need to stay focused on what we're doing and how I'm handling it. I'll certainly be thinking of people. Some of you might feels hugs from me in my head here and there. One of you might get more than a hug. My spirit is definitely not weak.

Love you guys.