March 31 2014 Inspiration, and Another Friend With Hip Issues...

Busy-but-sleepy work day, but mostly cane-free (just when I first get up after more than an hour sitting - the knee gets very stiff, yet).

I attended a great poetry event to benefit autism research- a fundraiser for the UC Davis Mind Institute  - one of the nation's top Neurodevelopmental centers - http://www.ucdmc.ucdavis.edu/mindinstitute/

The event featured poetry and essays by two of my favorite writers in the area, Dr. Andy Jones (a Ph.D. who teaches Literature and Writing at UC Davis) and he wife, Kate Duren. They have three children, their middle son Jukie, is autistic - the particular type of autism he has takes away language. They have written absolutely magical, honest, painful but most of all, profoundly loving words about having Jukie in their lives. He is 12, and a reminder of unbridled joy and love in the world. I had been following Kate's blog about life with Jukie, and it is wonderful. 

Another poet featured has raised an autistic so to the current age of 28, and she also had some really wonderful pieces about loving and living with him and the difficult decisions she was faced with as he has grown. 

It was a really wonderful event, and I saw some of my favorite friends from the poetry community. I came to poetry relatively recently, and these people are just wonderful, full of art and fun and very welcoming and kind - a trait I am coming to find is not always necessarily prevalent in some poetry communities. I feel grateful for them. Two of them, a wonderful couple, Mike and Eva, were there - Mike was limping and they were talking about his hip pain, and I immediately joined that conversation! When they met me it was just last year, I think - either shortly before or after I was reduced to using the walker, and in some really profound pain. I'd go up to to the mic with my poetry on that damned walker and sit on it to read.  

In fact, the pieces I was writing at the time were the first pieces about this Hip surgery experience... 

Well tonight, I was in my low heels - comfortably! - and took the cane with me just in case - and they were all pretty amazed. They haven't seen me since before the second surgery, and here I am sashaying all over the place (they also follow my progress on Facebook, come to find out!). Well, Mike has been having a tough time getting any action toward real relief - his doctor wants to try tylenol first... then Tylenol with codeine... basically, he wants to try drugs in increasing increments, it looks like, before he'll go to Hip Replacement. Really? I see how Mike walks, the kind of pain he is essentially trying to hide(I recognize it as through I were looking in a mirror of the past) and he should have better attention. 

I'm all for doing less invasive treatments IF they are going to be fruitful. But at a certain point, one must move on to a more attentive physician. 

If Mike's situation is NOT in need of surgery, and can be repaired in a less invasive fashion, hurrah, and more power to him! But it definitely seems it's time for him to bypass this doctor and at least find one who will listen to him. I waited FAR too long, believing the VERY wrong and dismissive diagnosis of "Soft Tissue Damage" before changing doctors and getting a second and correct diagnosis. 

I feel a bit like an ambassador. I was terrified to discover that I had to have surgery (There was NO choice by that time, and I was in very bad shape). People should not suffer like that because they are neglected by their doctor(s). 

 I have seen FAR too much of this, and will do anything I can to encourage people to get proper care. 

No- I'm not a doctor. But, do I know a LOT about medical care, this particular issue and have I seen a lot (Good lord SO MUCH) of very poor medical care? I wish I could say I had not. I have more experience with this issue than anyone should have to - but I choose to use it to help other people gain control of their own health care, and not have to go through the nightmares my loved ones and I have (and mine were the least of it). 

I still believe VERY strongly in alternative medicines - when I had pretty bad Carpal Tunnel Syndrome, acupuncture took the good progress I was getting with hand therapy and cured the condition! 

But when you are in the kind of shape that has little or no alternative and surgery will in fact give you your life back, that dammit, you should GET that. Not the damned runaround and shoved off with drugs. 

We all need to understand - WE ARE IN CHARGE. Our doctors work FOR US. We are not in their thrall. 

But (as I am fond of saying),  I have no opinions and I don't know how to express them. 

OK - I think that about does it for tonight! 

I wish Mike well, and I am here for him if he has any questions at all. He's a good guy and a terrific poet, and I wish him a full recovery as soon as possible.