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Old 11-19-2012, 12:24 PM #31
Idiopathic PN Idiopathic PN is offline
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Originally Posted by Susanne C. View Post
A counselor can be the same as a psychiatrist, but that wasn't exactly what I meant. A psychologist, or priest, or just someone who is a friend and very good listener, who doesn't feel compelled to fix every problem (because they can't) but who can really be with you and support you in your grief.
What you are going through- a potentially deadly illness compounded by a painful neuropathic condition, is too much to handle on your own.

My husband is my only real confidant, and frankly he isn't too good at it sometimes. Men always want to either fix things or ignore them. This is okay because my condition is painful and progressive, but I am not in any danger. I probably should see a psychologist to help me cope with the losses and anxiety about the future, instead of expecting so much from him.

In your case I think it is much more urgent that you have someone to help you deal with the fear and grieving over the loss of control you are experiencing over your life. Even with scary diseases like cancer there is a ritual for it, support groups, a treatment protocol that everyone is somewhat familiar with, but what you have is rare and people just cannot know how lonely and frightening it is in the same way they would react to someone with cancer.

Just a wordy way of asking, do you feel heard and understood in your current situation, or would it be wise to talk to someone trained in grief counseling? If I were you I would feel scared and frustrated and need to vent.
Dear Susanne,

Like you, my husband is my only (real) confidante and truest friend. He is very understanding and supportive of my condition. We discuss about what we researched on my condition. He probably understands my condition more than I do. i dont lack in understanding. in fact, that is only my consolation, having a husband a family who understand me. But this closeness somehow gives stress to him. It pains him knowing that I am uncomfortable. The little downside of my situation is -- my family support is "long distance". Most of them is back in my country My closest family is in California, while I live in Florida. I have my best friend who also lives in the same area. We are very close but I could not ventilate my frustratioins to her because she is recovering from her Stage 4 breast cancer. Her recovery is another story...

Talking to a priest was my way of coping with the loss of my first husband. I was devastated -- both emotionally and financially -- having been sick for almost a year, in and out of the hospital (mostly in).

THis is another aspect that, if given the choice, I would not want my husband to go through -- who himself took care of her first wife due to a cancer. Now, you may be thinking --whew, what an experience.

Not only the fear Susanne but also the frustration. The frustration of wanting to do more but your body could not do it. We had plans of travelling in 2013, but we may have to contend ourselves with short distance trips. I never anticipated to be sick this early.

Thank you for reading....
This forum has been very helpful to me.
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Old 11-19-2012, 12:43 PM #32
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I had severe carpal tunnel when my thyroid was low.
(many years ago).

I find today when I have some numbness that a Salonpas patch on the inner wrist (where the tunnel is) will take down inflammation quickly for me. In a day or two. I only have minor flares...playing Bejeweled typically sets me off. But Angry birds do not. Normal computer use does not bother me at all. Gardening or twisting the wrist and hand sewing alot seems to bother me. I had to give up crochet and needlework. Magnesium lotion at night on the inner arms also
helps me quite a bit.

I sometimes still wear my braces at night, but then only very occasionally. Sometimes not even once a month. It depends on my activity level.
Mrs.D, I think I played most of the Angry Birds games...I dont like though the "Space HD" version. I like the "Seasons" and "Rio" versions. Now, I am starting to enjoy the Pool Mania, Solitaire (its not the convential Solitaire) and the puzzle. Oh boy, when I start playing, I become so into it.

My osteoarthritis stops me from doing beadings. My bead works have been featured in national magazine in our country It means it was really nice - ahem. I have flare up of my osteoarthritis these days. My rings could no longer fit in my ring fingers. Its painful and looks awful. But, when you have other health issues, who cares about the looks of your fingers. I will take that any day, just give me a pair of healthy lungs (without the bugs) and healthy nerves!

While watching TV I apply warm compress to my hands and at bedtime, I use Epsom It lotion.
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Old 11-19-2012, 02:14 PM #33
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Talking

heheheh..

I don't have a smart phone yet...(getting one soon), so I am
stuck on computer. FaceBook has free Angry Birds...
I try to beat my last score on the older ones. They are not the complete set of games you know, and are only a sampler.

I liked the Halloween tournament very much however, with the groaning zombies! LOL

I just love blowing up stuff...this way. I don't like other
role playing games or army or the scarey types though.

Angry Birds is just my speed. I just ordered a cat toy with Angry birds dangling off a stick from Amazon. I think that is mostly for MY benefit! One can stop anytime during Angry Birds so the hand doesn't get so numb for me.

It is nice to know some other adult like them. When I stop in stores it is always the kids hanging around the stuffies.
I bought one little red bird for $3.99 at WalMart. I have a photo of the kitties on my desk...and the bird shows there in my album

Weezie who does not meow much, but goes WHeeeeee instead, loves it when I play and the white bird who drops the egg is on screen. That sound is just like how Weezie sounds! She sometimes comes next to me and does a little wiggle dance trying to catch her tail, when that white bird is working! It just cracks me up...she can be soooooo funny. She likes the sounds of that game quite a bit.
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Old 11-20-2012, 08:57 AM #34
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I think it is really interesting that bejeweled sets off hand pain and angry birds doesn't ! I have them on the iPad, my husband bought it for me last year because I can't use a mouse and I was having trouble holding a book.
My 13 year old son will yell at me if he catches me playing bejeweled because he knows it hurts, my hands claw up from it and even hurt the next day. It is so addictive, though! I should stick to angry birds.
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Old 11-20-2012, 10:14 AM #35
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Wink

We had a news snip on our news forum about Bejeweled helping to keep the brain sharp as people age. So I tried it...I like the simple version and play it on MSN games.

But boy my hand suffers! 4 games is my maximum with it. My son called me up when Angry Birds showed up on FB ...saying he thought I'd like it. I have become addicted to it. I find it defuses my frustrations with pain and some days it is all I have to deflect my discomforts. My arthritis flares up sometimes and really limits my mobility.
My hand never goes numb with Angry Birds but I do get a bit stiff in shoulders sometimes ...
I try to get 3 stars without the power-ups. I don't like the power-ups too much.

We are getting smart phones (our first) this month, so I will probably get the apps for it. But playing on the big screen seems much more fun IMO.
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Old 11-20-2012, 11:44 AM #36
Idiopathic PN Idiopathic PN is offline
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I wonder why bejewelled causes our fingers to hurt

I am so addicted to Angry Birds. My husband would ask when he calls: "are you killing those angry birds again???". Have you experienced that when you fail to hit the target, unconsciously you tilt the kindle or the ipad hoping that it willl help breaks down the targets? I do that unknowingly when I am so much into it. I hate when I fail to hit them and they seem to "smirk" at you.
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Old 11-20-2012, 12:01 PM #37
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I wonder why bejewelled causes our fingers to hurt

I am so addicted to Angry Birds. My husband would ask when he calls: "are you killing those angry birds again???". Have you experienced that when you fail to hit the target, unconsciously you tilt the kindle or the ipad hoping that it willl help breaks down the targets? I do that unknowingly when I am so much into it. I hate when I fail to hit them and they seem to "smirk" at you.
I do the same thing. And yes, they do smirk at you. All of this talk has motivated me to download the updates...
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Old 11-20-2012, 12:20 PM #38
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Lightbulb

smirk and snort! That is what they do. Doesn't bother me too much.

I play on the computer, large screen. When I shoot I sometimes lean back, to the left or right as the birds fly. Mostly with the more difficult shots. When I do eventually get a new high score, there is alot of YAYYYYYY.... LOL

I've noticed that if you play alot... the games go against you score wise. I get my highest scores in the first 5 or so tries.

If I just keep playing to get a new score, it seems to change your aim of the birds etc...I think the games cheat. Or they discourage you this way so you will leave and not eat up their bandwidth. It might be different on the PC game you own, or on apps.

I just back from AT &T... we now have our first smart phones...
iPhone 4S! Going to our son's for Thanksgiving and he is going to show us how to use them. But hubby and I called each other just now, and they work! Nice sound too. Had to get rid of Sprint...they were down upNorth for 4 weeks! Made me so ANGRY. So since the folks up there all said AT &T was the best carrier now there, that is what we decided. It is our birthday presents to each other!
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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"Thanks for this!" says:
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