Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 06-06-2007, 02:02 PM #11
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Since I homeschool, I have a few craft idea websites, here goes:

http://www.fabulousfoods.com/holiday...peepcraft.html

http://www.joysikorski.com/HOWtoDRAWlisto.html

http://frog.edschool.virginia.edu//Frog2/ (your oldest will like this one)

http://www.funbrain.com/ (for the younger ones - it might make the older think he's doing school)

http://homepage.mac.com/cohora/ext/internethunts.html (scavenger hunt)

http://www.pudgybunny.com/colorcarebears.html

http://www.google.com/search?hl=en&q...=Google+Search

Hope these help.
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I AM NOT A DRUG SEEKER,
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Last edited by junk4myemail; 06-06-2007 at 02:04 PM. Reason: added one more craft link
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Old 06-06-2007, 08:04 PM #12
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Heya,

Firstly - about grannies.. like Rogue I had Old granny and broken granny.

Broken granny had broken her spine when she was in her 20s and paralysed her left leg and partially paralysed in her right leg. The accident also gave her severe chronic pain and sciatica and numbness and all of that. Although she could get round the house on crutches she had to have a wheelchair when she was outside and she spent alot of time resting.

I remember her so much more than old granny. I loved her to pieces. She taught me chinese chequers, how to iron, supplied me with books, taught me to cook, encouraged me to live my dreams (before RSD I desperatly wanted to do medicine and granny had a degree in tropical medicine so we'd spend hours talking about it). She taught me to knit, sew, card wool, spin, weave, make rugs, crotchet and any other handicraft. It didn't matter if we had to stay in- we always had a ball. She taught me about animals, about herons, fish, frogs, toads. Even though we couldn't venture out of the back garden because of her walking we still would talk about plants and animals and anything. She encouraged us to perform plays, to write stories or to just hang out. We used to go and sit on her bed if she was having a bad day and just do a jigsaw or talk whilst knitting away.

As I got older and she moved down to live in a new house 2 minutes walk from ours she became someone that was always there, for coffee, ideas, sympathy or occasionally a kick up the butt for being lazy. Just walking in to the house just made you feel better somehow and comforted. After I developed RSD she was amazing at helping me learn to live with the pain, she understood, to some degree which is more than the rest of my family!

I guess I just wanted to say that I was always far closer to "broken" granny than I was to "old" granny. And it was because she always had time for me and also that she had a way of making the most boring things fun and was amazing at sparking hobbies for us to take up. (oh that's something else - we used to do loads of scrapbooking).

Irritability - I am far more irritable than I used to be - I'm usually very laid back about things but nowadays I just get so cross if things aren't right. I think I'm irritable because of pain and exhaustion and generally feeling rubbish. I try to keep it toned down but sometimes you just want to scream with FRUSTRATION at everything going on...

Your grandkids will remember you for being great!!

Love

Frogga xxxxxxxxxxxxx
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Old 06-06-2007, 09:11 PM #13
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sue,

i have lots of the same issues with my grandkids....not being able to do what i want with them, but i think everything that's been said here is absolutely true.

my oldest grandkids r 8 now, and one of them told me not long ago that he thinks it's 'cool' that Pop (my hubby) goes to the amusement park with them, because he doesn't get to go to story hour at the library with them like i do.....i find it odd that they equate library time and the amusement park, but these kids r big readers and even now when they read so much on their own, they still love to have me read to them.

reading is not especially sedate at our house.....if we come across something new, we look it up in the encyclopedia or the computer....and that can take a LONG time because if the article says "see also...." we like to look up the 'also' and can spend ages finding lots of neat things.....i can never explain the transitions later, but we can start with sharks and finish with lightening bugs, and the boys love it!

the one thing i want to point out is that u mentioned 2 specific things that really tie u in knots, and thy're things that cause me trouble too....both shopping and kids get to me because of the noise.....anything noisy will leave me just wiped out and hurting .....church is noisy - most people don't notice that, but it's true.......i haven't been to a movie in years, because the theaters r SO loud that my pain just climbs right up the scale......my grandkids have learned to back off and give me 'whisper time' so my 'bad arm' doesn't hurt, and sometimes i just go in the other room for 5 minutes of quiet, which calms me down.....it isn't just the pain.....too much noise will also leave me feeling like my skin is too tight, and i want to bite someone!

my family doc knows my daughter and her boys and asked me one time how i manage with them and i explained about 'whisper time' and how, if we're all out somewhere, they take turns holding hands with me on my bad side so that nobody can bump me....the doctor thought this was wonderful!...she says it's teaching the kids compassion, and to respect disabilities, and thinks all children should learn how to cope with the issues like that.

you're not crazy....it's this miserable disease that's crazy, with it's weird symptoms.....and try not to worry so much about what kind of grandmom u r.....i really think the grandmom's job is to love, to listen, and to pass on what we can....if your gang learns understanding and compassion from u, that's a wonderful legacy.

liz
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Old 06-06-2007, 10:41 PM #14
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Noise makes pain worse. Children = noise. Don't feel guilty about sending the children away. That's just the way it is. And the younger they are the noisier they are!
Luck, schmuck, I say (dourly). The fact is that if you're in pain, you frequently need it to be SILENT and DARK, and you must triage your energy. whether mother or grandmother, sometimes the best strategies are to have omnipresent help - the hired kind - or to visit the children, rather than letting the little precious ones invade yourhouse.
Sorry to sound like the Grinch, but children are a bottomless pit of need.
signed,
A Very Loving Mother (now guilt-free)
xoxoxoxox
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Old 06-06-2007, 10:54 PM #15
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Hey Liz,

I *SO* agree about the sound level of cinemas. Who set that, a stone deaf person? Certainly couldn't have been a normal human being.

I have a girlfriend who also has a strange condition (not RSD) and we try to get to a movie once every, maybe couple of months. We've cracked the problems, we wear ear plugs. Started off with the softer ones, but quickly switched to industrial strength...and that's fine. Still a little loud, LOL...

You are not alone,
all the best
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Old 06-07-2007, 02:45 AM #16
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I agree, Molly, lmao! You're right on many levels. Quiet Grandma needed her alone time, in a darkened room, for sure. Which I now totally understand.

My youngest son, Drew, now age 20, came to visit last summer. He was in town on business, so wife Kati stayed home But after Drew had been here three days, I HAD to ask him... Drew, do you really treat Kati like a maid, or is that a pleasure you reserve just for your Mom? I swear, he drinks a 6-pack a day of soda, and not one can made it into trash, unless I threw it away! His towel and dirty clothes were on the bathroom floor for 3 hours till I gave up. And the list goes on, lol.

He was, of course, embarrassed... and swore he didn't treat Kati that way, lol. I told him he better not, unless divorce was on his mind already... it was awful. It was a true pleasure when he went off to his morning conferences, I must admit.
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Old 06-07-2007, 12:53 PM #17
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Hi Everyone,

When I saw the word noise it made me think. I do get very upset when there is a lot of noise and confusion going on around me. It sets me right off. When things calm down and everyone has gone home, or I get to a quiet place, I feel better. Thanks for all the ideas and support. You guys are great!!!

Love,
Sue K.

Last edited by sue k; 06-07-2007 at 12:55 PM. Reason: spelling
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