Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group annual update, too long and un funny

karen the lioness, aloha again

good to hear from you.

sometimes the chase for a new and caring and hip doctor is worth all effort it takes.

i had to beg his office for an appointment; finally said ...'hey look i'm a cash customer,
you don't have to wait for insurance to pay you and what i want is a second opinion...
and don't worry about the distance, i'm the one doing the driving and buying the gas.'

btw he gave me a 30% discount on my bill...and after his 'second opinion' he decided
i was in such poor shape he couldn't turn me away...so...ya never know.
oh...and his receptionist booked me the last appointment of the day; he ended up
giving me an hour and forty minutes of his time and reviewed every piece of my records...and explained evry term and nuance...(he's also the only one to compare
before and after blood tests from my indocin-gastric event and tell me how close i came
to dying)...then he got sick and i moved to his partner/buddy.)

keep trying and good luck
all my best

aloha joyce

yeah...is it like sinful to buy wine in oklahoma ? scandalous ? wow...

btw...i had an old girl friend with whom i kept in contact over many years...she married
some other dude...(she said i forgot to ask)...back in like 1998 we actually went out
to dinner a couple times- just the two of us...(her husband conveniently arranged out
of town business meetings- he's a really nice guy)...so it was like almost a date.
i wondered outloud one time why we had to drive all the way to poohkeepsie to eat ???
'hey look, i'm just a married lady to the people in my home town...they don't know'

she had been a valiant warrior for peace, freedom, racial equality and social justice
back in the wonder years...strong warrior but unfortunately no longer among the living.

music on the box this weekend...ramblin jack, jim kweskin and the jug band and
dylan live at newport...much reading...read everyting john sandford has written, working
on peter robinson and ian rankin...and this winter my list is sandburg's bio of lincoln.

colarado springs in 1973 was a strange town...i was crashing with some homeless
folks who invaded some abandonned house with no cert of occupancy and no utilities.
hippies and cowboys in the same hall...well, there was a lot of shoving and jostling.

my flower garden at home is bearing up well...to my amazement, balsam and blue
aggeratum and columbines have appeared from last year's seed...a great mass of color

all my best
pu liki

aloha molly

yeah...the living in a state of fear, violence and hostility- it just makes ya less willing
to give up on your principles.

abbie, abbie, abbie...old friend, knew his place on 10th street...every year i spark one
up on the first night of passover just for abbie, perfume the heavens...such a shame;
he checked himself out cause he couldn't take the pain in his back and legs any longer.

oh...and he was an excellent cook, very good...worked as a chef when underground

thanks.
hope you're well

thanks, percy

what'd i say this time ? i can never tell what's 'good'

aloha,
hope you're well

sue22, aloha

it's an ugly story, lucky to survive...i don't feel like an inspiration, mostly just a now old
dude doing what i can to get by...

if you fell like breaking china,
break china laughing...pk/mb

best

Man I totally was born at the wrong time! I'm a child of two hippies, if you could call them that. My dad was stationed in Boston with the coast guard, and left for the weekend to go to woodstock. He tells me about all the really great free concerts he got to go to like Zeppelin, Jethro Tull, and others. my mom got front row center seats at many cool concerts too. They lived by the Steal This Book mantra.

Music for me now is my husbands band. They play classic rock and blues, you should have come to Poughkeepsie this Friday Ben, they opened for the Outlaws! I didn't realize you were so close!?

I'm so glad you are doing so well on Enbrel. You are one of the few who made my choice to try the aTNFs in the first place easier. I can only hope they work as well for me. For right now nothing. But I still have hope.

As for self medicating, I'm finding that works 10 times better then vicodin. Doesn't last as long, but the pain goes away 110%!

Maybe someday I'll find the right doctor, Ben.

I'm glad you finally found someone yourself.

Karen

aloha,gg13

hey i worked some of those concerts...four/five Youngbloods shows in parks around
boston for summerthing, a jefferson airplane show and a dead show downtown at some
old hall in the combat zone...and more...saw aerosmith in a bar where they got soooo
drunk they couldn't play the fourth set.

saw tull several times, never worked with them, but i did work with fairport convention
once- did the stage set. (dave pegg and the drummer for tull came out of fairport).

last time i was in poohkepsie ws 2002 for a pete seeger/ jefferson starship show
on the waterfront with fireworks, too...i don't drive at night anymore so the going out
stuff has kind of been on slow.

hope you're well
be brave

Wow - so, did you meet Richard Thompson? He's one of my songwriting heroes (I'm a singer/songwriter).

My dear Ben, I didn't get to read this (well much of anything) last week, but I thought I'd respond later rather than never. As usual, you've said it all beautifully.

I must admit that you're flame thrower in the butt analogy made me think uncomfortably of the movie "Fanny & Alexander" where the children watch their uncle throw a blue angel 20 odd feet. For those who don't know what a blue angel is, it's when someone lights a fart. Honestly, this is physically possible.

But I digress.

Oh and as for Alice's Restaurant, I want the 8x10 glossy photos, darnit!!!

Oh, I digress again.

I'm so glad your enbrel experience has continued so well. Personally, I think 'mild' is far too subjective when it comes to assessing the severity of this disease. Your mild might be another person's severe. And vice versa. Regardless, you have experienced the miracle and I hope it allows you to continue gardening, maybe keep following your favourite band and doing the other things that you love to do ... erm ... chocolate comes to mind.

You are a treasure, my friend. And I hope upon hope that one day I will be able to say that to your face.

Warm hugs,