Hi everyone.
It has been soooo long since I have posted on here as I have been going thru
alot. First I am shocked about Maggie leaving the group but I do understand as I
have felt myself ignored at times but as i look back the`questions or statements
I have posted may be there was no one at the time who had any helpful info to
give me ...does that make sense? Your posting to a large exclusive group and no
one wants to pass on wrong or misleading info . So I just plug on and later re
ask my question and sometimes someone does understand and answers my questions.
I dont take it to heart  I know this group has alot of heart and would help if
they could.
 Second about work or not to work.My hubby pushes me to work because he feels
without work i would be worse off. I do believe I may not be as bad as others
and i am lucky to have a very generous pain management Dr and I take my pain
pills and cope. I wish I could quit working but money is a big issue and maybe
my hubby is right i will end up a couch potato and maybe stiffen up more then I
am now.
But people just dont understand what a pain disorder is like living with. As you
can see from my pics I posted of my daughters wedding besides the puffy
prednisone look i dony look sick.(well how could U look sick in sunny
Jamaica!!!!) My fatigue has been very bad lately but I will be 45 the end of Aug
and this will be yr 9 for my AS and dont forget I also have RSD and the pain
from that has elevated to a point where i have to take baths because the water
from the shower hurts too much now. I havent heard anything about my treatment
for my rsd since they canceled it in May so I dont know when relief will come. I
just take enuff pain meds to put an elephany down!!!!
I wish some days others could live in our bodies for one day.even if its our
good days they wouldnt be`able to cope for 24 hours. I just surround myself with
my closest friends and some of my family who understand. Some family just thinks
i should exercise and loose weight and i would feel better....YA!!!! just get me
off prednisone and I could loose weight.
My office manager doesnt even understand and she puts me with the Dr that has
the toughest and latest hours because  unlike my younger coworkers I give 110%
and she forgets im sick...I go home and sleep 14 hours and miss out on life
..for what ...work??? where your really not appreciated. I mean I guess i am cuz
modt of the Dr's I work with request me cuz i do work .unlike the younger
healthy girls that are lazy....Im just tired of being so tired after work I miss
out on so much.
Am I making any sense??????
I guess if the fatigue would slow down I could handle the pain. My freinds stop
inviting me out with them cuz Im never up to it. or raraely. and if I do have a
good day Im going to spend it with my hubby and kids.(who are grown as u c in
the pics.) Walk the dogs around the resivoir  go to the track and see my hubby
race.SHOP!!!!! LOL
My Rheumy wont even think of treatment until I can get my RSD under controll and
I have NOOO idea when they will get the new batch of ketamine for my infusions.
Does that sound right to any of you???? let my AS get worse cuz you want to be
sure what pain goes with what syndrome???? I love my rheumy  cuz he was the one
who waited it  out till I got iritis and he found me HLA B27 pos. 3 yrs of
waiting with me and telling me its not in my head that it takes time with auto
immune disorders to come out completely...when other rhurmys said it was all
depression.....well now it is....but before it wasnt.
I guess I am rambling out of frustration ....im sooooooo tired I want to wake up
and fel like i actually slept and have energy to face the day.
OH YEAH i was just out of commish from my very first sinus infection. was out of
work for a week. was like a constajnt brain freeze and the antibiotics made me
throw up so much I lost 15 lbs!!! not a  fun way but.....i'll take it. I have a
new respect for people that get sinus infections alot. Sorry guys my heart goes
out to you all.
Well.......thanks for eading all this if you have made it to the end...Im just
venting...And to My Jersey Girls if you want you can look me up at work. and
maybe we can have a nice lunch one weekend . I work for Ocean Eye
Institute.(spencer is that TMI??? delete if u have to) just say its....from RSD
and I will know who U are.
Hugs to all my AS friends for being here. even if U dont reply to my mad mid
night rantings your all still here if I need you!!!!
Carla








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