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 06-09-2011, 04:13 PM #11
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The more stress I am feeling, the more I babble, repeat myself, and forget where I'm heading, what I'm doing or what I'm saying. So like my doc is continually telling me, lower my stress level, which translated to my life means say no more often, get the most and best rest I can, and laugh when I see that look on someone's face that says I've heard that before already. But I do appreciate when they tell me that I am forgetting the same thing all the time, so I can focus on remember it.

But laughing at myself is good medicine. Ask you family for some sort of high sign if you are going over old territory or repeating something, so before you get all the way through it for the third time, you know to redirect the conversation.

And Bob is right, if you aren't already a list maker, start now. And we live in the magical world of sticky notes, reminders that can follow us to every room. I've been known to write on my hand a time or two. I have an adress book just for my website passwords and user names. The less I require of my brain the more room I have for the important stuff. If I write things down in an organized way I don't have to fret about remembering
it.

Rest and simplicity,
A new learning curve,
To a less painful day,
pat e
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Old 06-10-2011, 01:55 AM #12
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I also feel for me I am very distracted and lack concentration. It is not always my memory is bad. It sometimes is that I will be thinking of my pain,worry,etc that I can't focus on what someone is saying. I would love one day to take a class but can't even imagine being able to focus. I lack patience and my mind is all over but seems to go back to the condition.
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Old 06-11-2011, 10:58 AM #13
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I loved my iPhone while I could afford the coverage. Now I have the free Safelink for a cell phone. When my iPhone contract was up, I used it as an iPod. I have MobileMe with Apple, so it would still wirelessly sync with my Mac for my calendar, contacts, podcasts, books on CD, podcasts.

My iPhone battery died, and it was one of the original ones. So could not get a new battery. Had to just throw it out, as they were giving people a new phone with two year contract instead. Could not afford that. I bought an iPad to use because it is hard for me to sit at a computer and type. I am using the iPad now. When I do use the Mac, I use a headset and dictation software called MacSpeech.

Then my Mac died after my battery backup/surge protector went bad and I did not know it. A storm fried it. I could not afford a new One, so I used just the iPad for months, and I really missed the iPhone that I was using as an iPod for podcasts and the calendar and notes. So, when I bought a new Mac, I got an iPod 4 also.

Now I am all "wired". It really helps. They all sync up to each other. All the notes, bookmarks, email, books, podcasts, photos, videos, etc. are the same. Every time I get near my wifi or join a hot spot, it syncs.

I keep my medication list and doctor info on there. Am in the process of scanning my MRI, CAT scans etc. And putting in PDF form to put on to. Also want to add to a thumb drive to add to my service dogs collar.

What really bothers me the most is that I have such trouble learning and concentrating. I used to love to read novels, and to learn new things. Reading is very hard for me mentally as well as physically now. Ebooks are a bit easier physically, all though the iPad gets heavy quickly. The iPod is lighter, but the screen is so small.

I used to love teaching myself about new things. Now I can't seem to learn anything. I signed up for to an online site to learn software like iPhoto. It is not college courses. I have done a lot of their classes five years ago, to learn photo correction in Photoshop, they also have some pretty detailed computer classes. I tried to do a couple easy ones a couple months ago, and really struggled. Very frustrating.

I have had RSD 11 years now. Pain meds have not helped. I do take Topamax and baclofen, and rarely get more than 3-4 hours sleep. I try to give myself a break, thinking that who could think straight in this much pain for this many years, on very little sleep, taking meds that are known to mess with thinking?
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Old 06-12-2011, 09:40 AM #14
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You too have learned that one computer really doesn't meet all our needs. Instead we're now at a stage in technology where we use different devices for different situations and needs be it smart phones, tablet computers, Web TV, or assorted laptop and desktop varieties.

I too have my IPhone (battery won't hold a charge but I got an external battery for less than $4 that's helping with this problem till the new 5G comes out this fall), multiple notebook computers (various sizes and weights) and just picked up the IPad 2. Thanks to great programs like Evernote and even the Kindle reader (that works with my wife's Kindle e-book reader), it's never been easier to keep our world synced up so can do anything everywhere. Cloud computing just keeps making this better.

When you look at the way WI-FI frees us from cords, now we can do pretty much anything we want anywhere. Watching a TV show I have recorded on my satellite recorder or using Netflix is so handy with the IPad, along with catching up on news thanks to them weighing it at a whopping 1.33 pounds (less if you don't have the 3G connection capability). Notebooks now have all the power even high end desktop computers offer for those who are stupid enough like me to dig way down deep in my wife's wallet - oh and mine.

We've never lived in a greater time, especially for those of us who live in smaller worlds due to disabilities that have sort of forced us into down-sizing. We might not get to run around quite as much as we once did, but there's no reason for us to be disconnected from this amazing world. Enjoying our toys is rather addictive, but one I'd be lost without. It's so nice to read others who are enjoying tech as it too enriches your life. If only Apple didn't make such nice stuff, but as you well know - these guys are right now the real innovators. Bob.

Quote:
Originally Posted by daylilyfan View Post
I loved my iPhone while I could afford the coverage. Now I have the free Safelink for a cell phone. When my iPhone contract was up, I used it as an iPod. I have MobileMe with Apple, so it would still wirelessly sync with my Mac for my calendar, contacts, podcasts, books on CD, podcasts.

My iPhone battery died, and it was one of the original ones. So could not get a new battery. Had to just throw it out, as they were giving people a new phone with two year contract instead. Could not afford that. I bought an iPad to use because it is hard for me to sit at a computer and type. I am using the iPad now. When I do use the Mac, I use a headset and dictation software called MacSpeech.

Then my Mac died after my battery backup/surge protector went bad and I did not know it. A storm fried it. I could not afford a new One, so I used just the iPad for months, and I really missed the iPhone that I was using as an iPod for podcasts and the calendar and notes. So, when I bought a new Mac, I got an iPod 4 also.

Now I am all "wired". It really helps. They all sync up to each other. All the notes, bookmarks, email, books, podcasts, photos, videos, etc. are the same. Every time I get near my wifi or join a hot spot, it syncs.

I keep my medication list and doctor info on there. Am in the process of scanning my MRI, CAT scans etc. And putting in PDF form to put on to. Also want to add to a thumb drive to add to my service dogs collar.

What really bothers me the most is that I have such trouble learning and concentrating. I used to love to read novels, and to learn new things. Reading is very hard for me mentally as well as physically now. Ebooks are a bit easier physically, all though the iPad gets heavy quickly. The iPod is lighter, but the screen is so small.

I used to love teaching myself about new things. Now I can't seem to learn anything. I signed up for to an online site to learn software like iPhoto. It is not college courses. I have done a lot of their classes five years ago, to learn photo correction in Photoshop, they also have some pretty detailed computer classes. I tried to do a couple easy ones a couple months ago, and really struggled. Very frustrating.

I have had RSD 11 years now. Pain meds have not helped. I do take Topamax and baclofen, and rarely get more than 3-4 hours sleep. I try to give myself a break, thinking that who could think straight in this much pain for this many years, on very little sleep, taking meds that are known to mess with thinking?
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