Another Brucism.....

[Guest guest]

I joined the group this year. I love you all and the advice is always very

helpful, from all of you, including wrong info that gets bounced around and

corrected. Bruce failed to mention his other subtle, but equally important

mantra... BE YOUR OWN BEST ADVOCATE. I came to the board after 3 years of

inaction on my part. Bruce gave me a road map to getting on track and the other

gems I have picked up through posts have helped me to stay on top of everything.

Yes, depression is a real sneaky devil. Comes with a lot of meds and certainly

with the mind-bender diagnosis. I grew up with the concept of mental

depression/disorders being a bona fide illness (there was a state mental

facility in my home town... lots of volunteer hours). My mom is a retired RN

(alive and well at the age of 91 and still volunteering herself at the local

hospital). Consequently, many of the items that fly through the posts are

things I have either read or been preached by my mom. I still need the

reminders though. Not all of my posts are responded to, but I am very lucky to

simply need to vent and not need help every time I post. I have received the

support needed when needed. Just want to encourage everyone to put out there

what they need to and just squeak louder if you aren't getting what you need.

And please, keep the humor there as well. This is not anything that seems to

ever get easier. I just went for introductory rehab at the University of Utah.

One of the question segments pertains to mental attitude. They want you to

clearly understand the terminal side of things and that the rehab is going to

give you perhaps a better overall tolerance level and the confidence to do what

you can in a calm rational manner and to know when you need to seek help

(reduced hospital emergency runs). When asked about how I felt about PF... my

response was that the best definition of my attitude was one of defiance. How

could I have this insidious disease, how dare they suggest that it cannot be

cured and I refuse to take medicine or do something that does not help me.

CLEARLY UNDERSTAND... I did take prednisone (and hate it) and will take it

again, but I will do so on my terms. I just know my body and my tolerance

levels better than a doctor. I take the doctors advise and work things out. I

have learned to be my own best advocate. I keep all of my doctors apprised of

what is going on. My family physician has not always been in the loop (though

she says that they are supposed to keep her apprised). I now double check on

all of them so that the right hand knows what the left hand is doing. I am

keeping National Jewish contacts in the loop as well. I go in for VATS biopsy

locally on Friday, August 21. Just a little apprehensive (really not a decision

to be made lightly), but I have weighed all of the advice and feel confident in

the decision. Not deluded. Just looking for a little more clarity on the type

of PF. Biopsy simply increases percentage of accuracy on diagnosis, and

reinforces medical staff on best course of treatment. Yeah, easy to soap box,

lol. Sorry, I am a talker. One more thing, to prevent carpel tunnel problems,

stop every 30-45 minutes, ball up your hands, splay your fingers, do finger

exercises (contract and extend each finger, rotate your wrists) and give

yourself a 5-10 minute break from the keyboard. Another 'trick' is to take an

unused washcloth to bed with you and roll it up and grasp it with your fingers.

Place your most painful arm (wrist) flat on the bed palm side down. Over time

this can make wrist pain associated with carpel tunnel less bothersome. I used

to work in an elementary school as the " computer lady " . We taught kids early on

that carpel tunnel is not always paid for by insurance and the best treatment

was prevention. We ended each session on the computer with the hand

exercises/shakes and the tips I have shared here (the one about the wash cloth

and extended arm while sleeping came from my doctor, as at one time I was

concerned about wrist pain... I have used computers in my work since I was 23).

Stefani

ILD 2/2006, NSIP (cellular) 6/2009, Diabetes II 2/2006, Sleep Apnea 4/2009