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 01-08-2007, 02:39 PM #1
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Default No sense of time.

I cannot keep up with dates nowadays. I can't remember how many years anything have been. If I misdate something here it goes with my brain not working right.

I became ill in 87 and went down hill from there. It will be 20 years in Nov. of this year.

What frustrates me I can't tell you when anything happened. I try to remember how long it's been since certain family members died and birthdates.

When my step daughter wrote to me today she said that Bill's Mom died 5 years ago. It honestly seemed like 3 to me. I have lost 2 brothers and a sister, a brother-in-law, a sister-in-law, 3 uncles and 2 aunts since 98 but can't tell you what years.

I can't remember appointments. I can't remember half of what Drs. tell me when I see them.

I think it's one of the most frustrating things. Drs. will ask me when something started and I can't tell them. I was thrown out of a Drs. office because he asked me to read a book on Fibro and I couldn't remember much of anything I read. I actually owned the book so I did read it. My caregiver was with me and she couldn't believe I was thrown out of his office because of that.

Everybody says write down appt. times. I do and forget to look at the calender. I forget to write in my journal all of the time.


Do any of you deal with this?

Ada
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Old 01-08-2007, 03:11 PM #2
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I have a little bit of it- I'm not very organized at all anyway.

So I have had to get myself a bit more organized just for these same reasons.
Do you have a dedicated space for all important notes and folders for medical, bills and things like that?

I keep a calendar program on my computer {Anytime - but theres' other ones out there} and it pops up every day when I start the computer up- so I am sure to remember appts and special days.
and every day I add anything that i need to remember.

I use sticky notes on computer screen and the refrigerator & I have a regular calendar on the refrigerator too - so the info is in 2 places.

I keep sticky notes at the phones to make any notes that i need and then stick them on fridge or computer- so i can add them if needed.

For the appts and such- ask drs for a copy of any notes and tell him you have trouble remembering the details of the appts.

they also have those mini recorders - ask if you can record/tape the appt so you can remember what they say.
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Old 01-08-2007, 03:35 PM #3
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Default Memory Problems

Hi Ada and jo55,

Last night I just read on Dr. Hooshmand's site that RSD affects nerves from the extremities into the brain, something like that, so thinking processes and emotions are affected.

Ada, Fibro is somehow the same...meaning I've always heard it affects "brains" in people.

I thought jo55's ideas were great! I'm going to do some of those things.

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Old 01-08-2007, 03:37 PM #4
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Hi Jo,
I have sticky notes. I have calenders. As I said, I try to do that but forget to look at them.

This morning I went looking for the garbage bill. I had put it where I would be sure to find it and I still couldn't find it. Bill took care of everything for me.

If Drs. offices didn't call to remind me of Drs. appts. I wouldn't get there.

I can't believe how bad my memory is. I never was this way until I developed RSD and Fibro in 98. The Drs. chalk it up to my depression. I'm always beating mys elf up for something I forgot to do.

I'm trying hard to stay as independent as possible, I don't want to put too much on my daughter so I'm doing all I can for myself but this memory thing worries me because if I don't keep my bills caught up I will be in a mess. I already forgot my cable bill in Dec. Of course it didn't help that I just got it in the mail Sat. with a whole stack of mail that I'm thinking must have been lost due to the storm.

I'm realizing now how much I depended on Bill. Actually he had me spoiled rotten. I don't want to stay that way though so I need to learn how to take care of everything myself.

Anyone that is married, I will say, if you have husband that spoils you rotten you need to think about what I'm saying. I just never thought of these issues until I lost him.

As far as the computer, I am also a computer idiot. I can turn it on, do some research and email and that's about it.

I am going to talk to Susan about setting up something like your talking about on here for me. She does all of my computer jobs such as sitting up my printer, camera and any other thing I need on here. It's not that I am stupid and can't learn it's just for some reason my brain won't keep it in.

I do think it goes with my depression also.

Thanks for the ideals.
Ada
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Old 01-08-2007, 03:52 PM #5
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Shocked yes..

Hi Ada and hi Jo..

I too forget everything, so much so that my family (santa) got me a hand held recorder..
I take it everywhere and it is great cause I do talk to myself, I just gotta remember to use it for what I need to remember.. lol

And to listen to it in the AM at the start of each day.. I miss days alot.. my mind is a colander.. er whatever you strain yr macaroni in.

take care,
sandra
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Old 01-08-2007, 03:54 PM #6
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ada,

a daytimer that has a journal, address book, pockets...they are the best.

you only have 1 thing to find. they are a little bigger than most, like a binder size. they have them set up to either see a day or a week at a glance. lots of room to jot down daily notes. i go back and look at ones from years past to help me remember stuff.

the pockets can hold the bills and reciepts. the day you get a bill, open it up, mark the date it is due on the right day and put the bill in the one pocket.

i started using one for business and personal years ago. mine is made by franklin covey. i get refils every year.

i do use my computer a lot. but having a home office...that i end up having to bring stuff to the actually business sometimes...this keeps it all in one place.

i totally understand about about you and bill. my folks have been married for 56 years. with dad not able to do the finances like he used to, mom had to learn it all.

(((((ada))))

ps...i'm writing down some of the hints and tricks you are getting.
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Old 01-08-2007, 04:16 PM #7
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Jo,
I should have learned from my Mom and Dad too. Dad died on their 56th wedding anniversary. He had took care of business all of their married life. Mom hadn't worked a day in her life. I will say though she did a really good job of raising 10 kids. We learned how to love and treat people as we want to be treated. So I honestly don't want to say she never worked a day in her life.

It's funny how back then they had a routine. Monday was laundry day, Tuesday was ironing, Wed was housecleaning and so on. I can't even keep a routine. Didn't learn that one either.

Mom had to learn how to keep a bank account and pay bills and do it all. By the time Dad died though I was so sick that I couldn't help her or realize what she was going through. Now I do. She only lived 5 years past Dad though. I honestly believe she was tired of trying to keep things going on her own.

Denise, I do believe that it is brought on by the Fibro as well as the RSD. As I said I read where depression affects it too. I'm just very tired of fighting it.

Another thing, phone calls, I have trouble with transposing nos. and I also have trouble with pushing the phone buttons on my phone. I can't believe how simple things become jobs for me. I sometimes try 3 and 4 times to call someone due to messing up phone nos.

You just start wondering if it's ever going to get better.

Ada
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Old 01-08-2007, 10:16 PM #8
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Default other tricks

if u absolutely HAVE TO remember something as soon as u get up in the morning, put the post-it note on the bathroom door or mirror.....it's also possible to write on a mirror with a cake of soap (i use this on procedure days so i don't forget and eat or drink something).

my other favorite memory trick for when i simply must remember to take soemthing with me wherever i'm going is to put the car/house keys with the item in question.....used this way back when i was working because i was the champion lunch-forgetter, so i'd put my keys with my lunch in the fridge.

other than that, it's calenders, post-its, notes, and apologies.. .....i have a nice line in grovelling!
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Old 01-09-2007, 07:47 AM #9
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Default I worry...

I worry all the time about my husband being alone and taking his meds while I'm gone. The other day he asked one of our children if he had taken his meds or not - as I was not up first that morning (usually I am) I had no idea if he had or not...Thank goodness our son was and remembered that he HAD taken them.

It's REALLY scary for me - I work generally from 6:15 in the morning and usually dont get back till the mid afternoon....He has meds he takes during that time. (Well on and off all day long...)

We thought of having him to write it down (the times he took the meds ) but were sure he'd forget to write it down - We thought of notes - But he might forget to look at them - So we're going with the pill box that has the times down on it.

This whole memory thing did not start until he began taking Lyrica - since shortly after staring them his memory is not always "on".

I worry so much about him - especially him being home alone while I'm gone - I do have a statement from the Dr saying I'm needed at home to care for him and could collect public assistance but first - How much would that really be - I'm sure it would be minimul - Second I like my job and do enjoy being there - it gives me a "break" from whats going on at home...

I guess we'll try the pill box and go from there - Hopefully it will work.
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Old 01-09-2007, 12:26 PM #10
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Hi Ada,
Please know I think of you often and wonder how you're doing. Well, I know how you're doing...it all just takes time...learning to live in a totally new and unfamiliar way; I know. xxxx

and Hi HwRSD! - Do you mean the large shallow pillboxes with little compartments for the particular pills for each dose? A friend with Parkinsons has those, he has to take scores of pills per day, different meds, different times...says he couldn't live without the boxes - he puts each dose in day order at the start of the month, each dose within a day in a separate compartment, all ordered for the coming month. Says it's simple - if the pills are missing when he thinks he forgot a dose, he knows he already took them and vice versa. Actually I can't think how else you'd manage so many without them...

No idea where he got them from, he's in the U.K.
all the best!

Last edited by artist; 01-09-2007 at 01:27 PM. Reason: spellig....
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