I thought I was

So, I thought I was going to write about a medical report I read that said there is a type of hearing loss where you can hear fine in small groups and quiet places but in loud places, even if you could hear them, you can’t understand them. But then I thought that wouldn’t be useful - because while they know about this type, they don’t know what to do about it…

So then I thought I’d write about how hard it is to get exercise in the winter when your balance is well, not balanced, and most of the sidewalks are full of ice. But then I thought, that’s just whining about my personal excuses.

So then I thought I’d write about how, when your head already hurts, navigating the waters of impending freedom from parents with an 18 yr. old and a 19 yr. old is not even close to an unbalanced walk in the park. But then I thought, this isn’t an adoption parent support group - there are other places for that.

So then, I thought I would write about how my eyes keep changing. I literally have four sets of glasses and at varying times, I have to switch to a different prescription because they get really bad otherwise. But then I remembered that my neuro surgeon said I’m complicated, so… Oh and these 4 pairs - are the last 4 pairs I’ve had.

So then I thought I’d write about my headaches and drugs - and that can be short - my psychiatrist, neurologist and pulmonologist all agreed to try to decrease one headache med (which doesn’t seem to be doing much) and then increase another which does seem to help. Not cure, but help. For those who care about med names, we are a little over 2/3rds the way off amitryptiline and when that’s gone, we’re going to go from 60 mg to 120 mg of Cymbalta. Originally given for depression (seems to help some) but lowering the “volume” of the headache pain. So that’s a good thing.

So then I was going to write about the 2 year anniversary. But then I remembered that tomorrow is the 2 year anniversary of when one of my family (not my wife) made some bad decisions (not irreversible) and next Thursday is the 2 year anniversary of when the wheels fell off the AVM Wagon. Hard to believe it’s been that long.

So then I thought I would write about…but if I did, I’d probably repeat myself quite soon. And I didn’t want to do that, so I didn’t.

Oh wait, I guess I did.

No matter where you are, no matter what’s gong well and what’s not, remember we’re here.

Maybe next time I’ll write about that.



On the subject of headaches. I suffered with migraines for decades. Then I changed dentists because I moved. She said I was grinding my teeth. I got a night guard to wear while I was sleeping and she gave me treatments for TMJ. I still have headaches but not as severe as before and not as often. It might be worth a shot to check it out. Good luck!!!

TJ, I just love reading some of your posts! All the stuff you thought about writing, is the same kind of stuff we go through daily. It’s good to know that you, me, and we are not alone on this journey. Wishing you well.

Sharon D…


Hey Sharon,
“…we are not alone on this journey.”
And that is MASSIVE. The isolation that a rare condition can bring on is a major burden for everybody involved. That idea of ‘Am I the only one going through this…?’ is very common and just to have that ‘Phew’ moment can be such a relief. That is why we are here and TJ I think everyone of your points are very real for many of us, me included.
Ohh, phew, I’m not the only one.

Merl from the Moderator Support Team

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Nice to see your honesty here. Many people have so many of these same issues, but they sit quitely (sp?). I feel almost everyone here have many of these same issues, including me, a little!?!