On Fri, 1 Oct 2004 17:33:25 -0400, Marisa2 wrote (in message ):
I can't tell you how much I appreciate that. Especially since the whole sister in law thing got incrementally worse this afternoon. I was telling Bob about the phone call, without knowing that someone else was listening.
She freaked.
I reassured her that as far as I have heard, I am not dying, and that even though I look awful (no sense lying to the kid), I fully expect to get well. She told me that she _knows_ I withhold information, and I confirmed that. I told her that I don't tell her about scares or scary guesses, because there is no point in it.
The child agrees with me, understands why I only tell her about definite stuff, and wants to punch her Auntie in the head. I think I have her convinced that her Auntie meant no harm, that's just how she talks sometimes.
Thank you. I bawled like a baby hearing that. I try not to let my pain keep me from being the person I really am. It'll go away one of these days, I know it.
Kathy N-V
On Fri, 1 Oct 2004 17:48:23 -0400, LC aka Fiddy wrote (in message ):
You know, when I picture you in my mind, I don't really think of a person. I think of a beautiful spirit who is a marvelous story teller. Your posts aren't always filled with sunshine and roses but then again, neither is life.
I'm just sorry your SIL hasn't learned the meaning of tact.
That really sucks that Amanda overheard the conversation. I feel so bad for her at that moment. It's scary to think of a parent not being there for you.
Yeah. I can get pretty stupid under stress too. I always put my foot in my mouth then. I'll bet SIL is kicking herself for asking in those words. But those are the subtle signs a person who is really paying attention would see. It sounds like she loves you.
I also think that it would be a generous thing to let others in the family know about your health. It would be a gift to them. Hopefully the ones who care enough to ask, even tactlessly, care enough to hear you out and respect your wishes regarding how you want to be treated.
On Fri, 1 Oct 2004 23:22:08 -0400, Christina Peterson wrote (in message ):
Actually, she knows about all the health issues, within reason. I don't want to bore or burden folks with all the gory details. I truly think it was the shock of seeing how much I've changed.
Manda brought out some photos of me two years ago, and some from about five years ago. You'd never know that the person in those pictures is me. If you had to guess, you'd think I was in my sixties, and you'd never know that I'm younger than my mother. Really.
Bob and my sister know everything - my parents get way too freaked, and my brother isn't like that. He cares, but is not at all the warm and fuzzy type. My adopted family in Oregon also know everything, and are wonderful.
And thank you guys - I was severely bummed this afternoon, and you all cheered me up so much. I feel like I'm back on my feet again. (virtually, of course)
That's enough. I think she's right -- that would do it to ANYONE. ~~ Sooz To live a creative life, we must lose our fear of being wrong. ~~Joseph Chilton Pearce
On Sat, 2 Oct 2004 0:46:58 -0400, Dr. Sooz wrote (in message ):
I'm sure that is contrbuting to it. I am in serious pain 24/7 - enough that I have to make an effort not to cry. There is no position in which I cam comfortable, and I rarely sleep more than a very short stretch at a time. It sucks beyond belief.
I have _four_ doctor's appointments next week, besides the sessions with the acupuncturist. I'm praying that at least one of the docs will be useful to me.
I want you to know that I'm actually going to see an acupuncturist next week because of your last post. I hated the idea of even seeing one but with such pain lately I'd give anything for just a few moments being pain free. So I've resolved to try anything to get better. I've been in a funk lately and I didn't realize how bad I was feeling until we went to the doctor's office on Wednesday. They wanted me to rate the pain and when I said 11.5 they went bonkers. It was the first time I had ever admitted to them being over a 9 in four years going there. So with that in mind I went to our small town (don't blink or you'd miss the stop light) and found our local shop. I walked in and set up an appointment. DH was utterly amazed I actually took those steps.
So thank you for being my inspiration. I hope that you get some resolution next week.
On Sat, 2 Oct 2004 1:51:00 -0400, starlia wrote (in message ):
I hope it helps. My guy is so gentle and kind, and I don't feel the needles at all. He also burns some smelly stuff that is supposed to help and puts a blue laser light on the most painful spots (no idea why).
My scientific mind is rebelling - because I don't understand the mechanism of how it works. But it does work, and has for billions of people for thousands of years. Can't argue with a record like that.
Kathy N-V
P.S.: And don't you hate that damn chart with the faces on it? I want to smack all those little cartoon faces and replace #10 with a photo of me gnawing my arms off or something. C'mon - #10 pain is a pouty little face with two tears? Wrong. #10 is curled up in a little ball, shaking to maintain control over the pain to keep from screaming. I don't even take a tylenol for a stupid frowny face.
{{{{{{Kathy}}}}} Chronic pain is more than enough to make anyone look like death warmed over, Kathy. While your SIL was blunt and probably rude, it is obvious that she cares and is concerned about you. Here's hoping the docs come up with something that honestly helps get your pain under control!
If I couldn't get my pain meds I know I'd look like Dorian Grey's portrait -- the one hidden in his attic? That one. Pretty! =:-O ~~ Sooz To live a creative life, we must lose our fear of being wrong. ~~Joseph Chilton Pearce
On Sat, 2 Oct 2004 13:29:47 -0400, Dr. Sooz wrote (in message ):
Oh yes. The pain clinic doc told the PCP that it would be dangerous to discontinue it. However, he tried to refuse a refill of my Prednisone - discontinuing that abruptly would be fatal. My pulmonary doc straightened him out about that instantly. I feel like a little kid playing tattle tale when going from one doc to another - sheesh.
This guy is SO trying to get rid of me, and I now know why. I called the insurance company and the ombudswoman told me that there are two likely reasons: one is capitation - an allowance each doc gets to pay for a patient for a year. I use a lot more medical care than my allowance, and it costs him money to take care of me. The other is outside referrals - the specialists I see are largely outside the networks of HMO providers. Why would they bother with the insurance company bull? - they have more patients than they know what to do with. My PCP also loses money every time he has to provide a referral outside the network, and no in-network docs want anything to do with me, except my wonderful cardiologist and the physiatrist who ended up having to release me from his care (what a sweetheart, though).
The ombudswoman said it was strictly against the agreement that the PCP signed with the insurance company, but there is really no way to ever prove it. Her suggestion was to talk to my specialists and find another PCP who is used to working with them. I was warned that I'm unlikely to find someone in my suburb - it'll probably be at the Boston hospital where I go for everything else. Teaching hospitals don't mind having complicated people, because it makes for better teaching.
It'll be all right. As horrid as this is, I'm slowing unwinding all the red tape and getting to the bottom of this. I strongly suspect that it's going to end up being diagnosed as some funky immune system disorder, because that would mesh perfectly with my lung disease and decades of steroid use. I've found out that neuropathy is a symptom, not a diagnosis, and they want to know where it's coming from.
I can't argue with that - I want to know why it's happening, too. From their point of view, giving me pain meds will make their job more difficult by masking symptoms. Too bad they can't spend a day, or even an hour, in my skin. They wouldn't be talking about masking symptoms any longer.
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