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 02-16-2013, 11:06 PM #1
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I love to read. Books are my savior. I also like music. I'm an okay singer, but since I had the blood clots I don't seem to have the air to breathe through anymore. I am 38. I used to be a 5K, 10K, triathlete so being incapacitated has been tough on me. I can walk some now, but my RSD spread fast and everywhere. I'm even seeing an opthomologst for my eye problems. My kids keep me out of th isolation that tends to come with rsd. I have a sr in high school, a 13 yr old, 12 yr old and a 10 yr old. One boy in the bunch. Lol, he's the 12. They have rolled with all the changes and help. I miss the old days. I like funny movies, also. I play on the computer, but not a big game person. I play temple run and word games lol. I study a lot. I'll have my M.Ed May 11th. If I can use it remains to be seen. Anyway, that's a bit about me

TK
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Old 02-17-2013, 12:07 PM #2
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I love to read. Books are my savior. I also like music. I'm an okay singer, but since I had the blood clots I don't seem to have the air to breathe through anymore. I am 38. I used to be a 5K, 10K, triathlete so being incapacitated has been tough on me. I can walk some now, but my RSD spread fast and everywhere. I'm even seeing an opthomologst for my eye problems. My kids keep me out of th isolation that tends to come with rsd. I have a sr in high school, a 13 yr old, 12 yr old and a 10 yr old. One boy in the bunch. Lol, he's the 12. They have rolled with all the changes and help. I miss the old days. I like funny movies, also. I play on the computer, but not a big game person. I play temple run and word games lol. I study a lot. I'll have my M.Ed May 11th. If I can use it remains to be seen. Anyway, that's a bit about me

TK
Books are so wonderful arn't they? They can take you to another world. I have so many books. I finally got an e-reader and I love it! I like to think that I am a good singer but I don't know if others would agree.. lol Even though you can't do those 5k and 10ks isn't it great to say that you did? I would love to have had that experience, not too many people can say that. I think that is so cool. I am sorry that your RSD has spread fast, but it is great that you can still walk, it is good that you still do. It is so important for us to keep moving. I wish you all the good luck I can give to help you in your RSD issues. Kids are also great in helping you to keep you upbeat and outgoing. My daughter keeps me moving, between dance and soccer and all her activities and not to mention taking her to the park and playing with her. She is my world and she keeps motivating me to keep pushing forward and to keep my head up. To stay positive and not loose hope. Speaking about word games I am addicted to Words with Friends Going to school is great! Good job!!! Even if you can't use it don't let that let you down. It is still an amazing achievement!! So way to go!!
"Once you choose hope anything is possible!!"
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tkayewade (02-17-2013)
Old 02-17-2013, 01:32 PM #3
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I agree! I also have been reading on my iPad because I can see it easier. My eye issue is making it ard to differentiate between letters and numbers at the moment. I told my cousin, who is running a marathon today, that someday even if I have to walk the whole thing and stop to rest, I will do another 10K. Lol I do love having the kids because it makes me focus less on my disease and more on them. Im so glad to have kids that recognize my limitations and know that sometimes we can't do everything. I try not to lose hope. I'm going through a rough period right now. I was approved for a scs in mid Jan (I may have said this-rsd brain lol) and the dr and hospital are in a huge fight so I've been in limbo since mid December when we started it in motion. Anyway, I tend to do retail therapy when I'm depressed so I've tried to stay off shopping sights haha. I also play words. I can't remember my ame, but I'm logged through Facebook. Oh yeah Facebook. I spend a lot of time there, here, and I funny. Oh my! Now it can be off color, but it never fails to make me smile.
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Old 02-17-2013, 01:38 PM #4
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Thumbs up Mandars

I love that!! That's so cute! Animal rescue is so selfless. I think that's sweet. Our dog and cat are rescue animals. Now they are the most spoiled animals in Texas haha. They're great, and we make up for the love they didn't get in the beginning. My 10 year old daughter crochets. Each of my kids had to choose a non electronic hobby to try that wasn't sports related. One chose painting, one chose clay/pottery, and the youngest chose crochet. I also chose painting. Sometimes it hurts, but I do it on my good days.

TK
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Old 02-17-2013, 06:15 PM #5
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I love chinchillas! I used to have some. They were my world. I am looking forward to adopting more soon. They are the cutest and most loving animal. And boy do they have personality! lol My daughter would love a cat, but we only have a yorkie terrier right now. I think she sometimes thinks he is her dolly. lol but he loves her! Animals can be so comforting and they always seem to know when you are hurting or down. I also love to read. I am reading a series by Pitticus Lore. It is really good. What kind of shows do you like to watch?
Always follow your heart, it will lead you to your right path. It may not be the easiest path but it will be the right one.
Angelina
I watch all kinds of shows from general hospital and days of our lives to DIY and house hunters on HGTV. I generally record at least 6 shows or more on my dvr a day. I never really watched Bones before this year, so I'm currently catching up on the seasons from 2006 until current. South land season just started on TNT and I am excited about that.

Last night I watched Dr.Pol, Pit bulls and parolees and Too cute kittens :-)

I also keep up on the news and watch or listen to at least a couple hours a day.

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Hi Andelina, I know from the replies to your thread that some people seem to be in legal things with their RSD so can't really post, but as I'm not I love the idea of talking about things other than RSD.

My name is Mandars (Amanda, but nobody calls me that), my late husband shortened my name to that & it's stuck I'm 50 this year, although I've had RSD for nearly 1/2 my life I have tried to ignore it & get on with life where possible. I'm a widow now & have been since 94, like you I have a daughter but she's grown up now. Suzi lives with me still & is engaged to a lovely lad, they plan to live with me even when they're married.

I used to run an animal rescue centre for cats, rabbits, guinea pigs & birds. I even had a little owl for several months. Although I stuck to taking only those I've told you about I did take in an iguana from some one who was posted abroad. I was living in a military area at the time in the south of England so had a high turn over of pets needing homes as people were posted else where. I had to give the centre up when I moved, but I still miss it. I have pets again now, an assistance dog that I trained myself, a guinea pig, 2 zebra finches & a quail. All the birds are rescued, some habits die hard

I do a lot of crafts also, I crochet, knit, cross stitch & sew. I have a grip thing to help me when I'm bad, the rest of the time I tuck the knitting needle down my brace & knit away! It's probably a sight that would give the avid knitter heart failure, but it's fun

I also love dolls housing, I use my ot therapy to make mini things for the houses we have. I use clay & femo to make foods & accessories, I sew fancy dresses for the dolls & make all sorts of soft furnishings for the houses. Whilst I was running the rescue centre for pleasure I was also working from home. I designed & made ball gowns for the military wives, also some wedding dresses.

Nice to chat to you
I used to cross stitch before all of the surgeries and RSD. My friend gave me one of those frames that holds the fabric. I keep say I am going to try it and see if I can do it now.

I used to want a doll house. I actually got a kit many years ago and it never got put together. I've always loved looking at them. I know I couldn't have one now though. With my 5 cats they would destroy it and be stealing, playing and running around with the miniature things

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I love that!! That's so cute! Animal rescue is so selfless. I think that's sweet. Our dog and cat are rescue animals. Now they are the most spoiled animals in Texas haha. They're great, and we make up for the love they didn't get in the beginning. My 10 year old daughter crochets. Each of my kids had to choose a non electronic hobby to try that wasn't sports related. One chose painting, one chose clay/pottery, and the youngest chose crochet. I also chose painting. Sometimes it hurts, but I do it on my good days.

TK
I love that idea of a non electronic non sports hobby. I'll have to tell my sister about that for my nephew.

Most of my zoo is rescues with the exception of my 2 exotics(the chinchilla and turtle)
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Old 02-19-2013, 01:47 PM #6
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[QUOTE=fbodgrl;958017]I watch all kinds of shows from general hospital and days of our lives to DIY and house hunters on HGTV. I generally record at least 6 shows or more on my dvr a day. I never really watched Bones before this year, so I'm currently catching up on the seasons from 2006 until current. South land season just started on TNT and I am excited about that.

Last night I watched Dr.Pol, Pit bulls and parolees and Too cute kittens :-)

I also keep up on the news and watch or listen to at least a couple hours a day.



fbodgrl,
I just love Bones. I used to watch it all the time, but I missed a season so I don't know what is going on now. I will have to catch up. I also enjoy watching HGTV House Hunters is one of my favorites. And I have been good about watching the news lately. I try to watch it every morning, but I don't do a very good job about watching it at night. I also watch Vampire Diaries. It is a show my sister and I watch together. I really like watching cooking shows. And then of course it seems I am always watching educational cartoons! lol because of my daughter. Other than that I am always watching movies.
Angelina
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Old 02-21-2013, 09:51 AM #7
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fbodgrl,
I just love Bones. I used to watch it all the time, but I missed a season so I don't know what is going on now. I will have to catch up. I also enjoy watching HGTV House Hunters is one of my favorites. And I have been good about watching the news lately. I try to watch it every morning, but I don't do a very good job about watching it at night. I also watch Vampire Diaries. It is a show my sister and I watch together. I really like watching cooking shows. And then of course it seems I am always watching educational cartoons! lol because of my daughter. Other than that I am always watching movies.
Angelina
Angelina
TNT has bones on for 4 hours a few times a week. Right now they are in the 2008 season. That is how I have been watching all the old ones that I never saw. I just DVR them all.
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Old 02-19-2013, 01:38 PM #8
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I agree! I also have been reading on my iPad because I can see it easier. My eye issue is making it ard to differentiate between letters and numbers at the moment. I told my cousin, who is running a marathon today, that someday even if I have to walk the whole thing and stop to rest, I will do another 10K. Lol I do love having the kids because it makes me focus less on my disease and more on them. Im so glad to have kids that recognize my limitations and know that sometimes we can't do everything. I try not to lose hope. I'm going through a rough period right now. I was approved for a scs in mid Jan (I may have said this-rsd brain lol) and the dr and hospital are in a huge fight so I've been in limbo since mid December when we started it in motion. Anyway, I tend to do retail therapy when I'm depressed so I've tried to stay off shopping sights haha. I also play words. I can't remember my ame, but I'm logged through Facebook. Oh yeah Facebook. I spend a lot of time there, here, and I funny. Oh my! Now it can be off color, but it never fails to make me smile.

I am glad for you that your kids understand that you have limitations. Sometimes it can be hard to keep up hope and faith but there is always room for hope! "When all seems lost and it seems like nothing is left, there is always hope." I am not sure if I quoted that correctly, but it is from one of my favorite books. I also spend lots of time on facebook, and the internet period since this disease. You can go anywhere from your bed! lol That is another reason why I read..lol I wish you luck with your scs. Keep us posted.
Angelina
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