|Member Since||08/27/2008 11:38 PM|
|Last Online||02/25/2013 05:05 PM|
|City:||CANBERRA ACT AUSTRALIA|
|Occupation:||UNEMPLOYED ON DISABILITY|
|A little about me:|| HI I'M 27 YRS OLD AND HAVE BEEN MARRIED FOR NEARLY NINE YEARS TO AN AMAZING MAN WHO TAKES REALLY GOOD CARE OF ME AND NEVER COMPLAINS WHEN I CAN'T DO SOMETHING.I HONESTLY DON'T KNOW WHAT I'D DO WITHOUT HIM. I HAVE NO KIDS BUT A REALLY CUTE CAT WHO'S SPOILT ROTTEN.
I WAS DIAGNOSED WITH RSD IN 1996 AND WHEN I FIRST HAD IT MY DOCTOR ONLY KNEW OF 4 OTHER PEOPLE IN AUSTRALIA WHO HAD IT SO WE BASICALLY LEARNED ABOUT IT TOGETHER. I HAVE ALSO BEEN DIAGNOSED WITH FYBROMYALGIA AND HAVE PROBLEMS WITH MY LEFT KNEE SO THAT MAKES LIFE INTERESTING.
I'VE FOUND THAT AFTER AWHILE YOU START TO GET USE TO THE PAIN AND JUST PUT UP WITH IT. A LOT OF PEOPLE THINK THAT THERE IS NOTHING WRONG WITH ME AND I'M MAKING IT ALL UP BUT SLOWLY OVER TIME THEY SEE ME ON A REALLY BAD DAY WHEN I CAN BARELY MOVE AND THEY REALISE THAT I DO HAVE SOMETHING WRONG WITH ME. THIS IS THE FIRST SUPPORT GROUP I HAVE JOINED SO IT MIGHT TAKE ME AWHILE TO GET USE TO TALKING TO YOU ALL SO BEAR WITH ME.I LOOK FORWARD TO GETTING TO KNOW YOU ALL BETTER.
|Dear Members of the RSD Support Group,
This hug comes from all of the new group leaders at the RSD Support Forum. We are sending you this to let you know that we have renewed our commitment to provide a safe and comfortable place for you, our members, to receive the love and support that is so needed when suffering from CRPS/RSD.
Our new leadership team has developed a Mission Statement we would like to share with you:
"To provide a safe and enjoyable environment for group members; encourage participation; and guide members to follow rules and terms of the site with a gentle hand."
that this forum is a positive experience for all members: a place you can find friendship, learn about
condition, and find
​a safe ​
space to express your experiences
You can read about our new, simplified group rules here:
and read about
​each of ​
our goals for the group in our leadership profiles here:
We hope that you will come on by for a visit, read some posts, write some posts, and make yourself at home with us. We are here to serve you!
With Love, Peace, and Aloha,
Howard, Jenny and Julie
|Dear Friends, I am writing to let you know that I have volunteered to co-lead the RSD Support Group.
I feel very strongly that this syndrome is under-funded for research, that many doctors remain unaware of the symptoms of this condition (the average patient sees 5 professional medical providers before they are diagnosed), and also that the general public for the most part has never heard of this condition which afflicts 50,000 new patients every year in the USA alone. How many of you have tried to tell a friend of family member about your condition, and been met with a blank stare?
I hope to make a positive contribution to this site through providing information in posts and continuing to expand our Resources section. I pledge to be here for you as a friendly ear, so that you know that you are not alone in your experience.
I would like to see this group thrive as a welcoming community, where we can explore the ups and downs of this condition in a safe environment. We can make a difference in our own lives and in the lives of other CRPS/RSD patients by being better informed about the syndrome, and by sharing that information with our own community of doctors, friends and family.
I am particularly interested in alternative and complimentary tools such as those used by Rev and offered at many pain management clinics ~ such as meditation, relaxation techniques, and volunteering to help others. There are things that WE can do to help ourselves reduce our own suffering.
I will need your patience and a little coaching along the way as I am new to being a forum leader. I will sincerely appreciate any feedback from my co-leader Craig and from any and all members. If you have any suggestions or ideas, please feel free to contact me because this is OUR group, and OUR community, created and sustained by OUR participation.
Thank you for this opportunity to be of service,
|Dear my RSD/CRPS, Chronic pain friends and others.
It was a hard 2012. In fact the last few years have been hard. My husband had Quad bypass open heart surgery December 21st 2012, I spent Christmas in the hospital with him. I brought him home 8 days later. They took an artery from his left arm (12 inch incision) and a vein from his right leg (Approx 6-8 in incision) his heart has another 12 inch scar and 4 smaller horizontal beneath it approx 1.5-2 inches each where the large tubes were draining blood from the surgical site and his lungs. Tomorrow will be a week since we've been home. I spent the first 2 nights in the van at the hospital, during a storm, very cold, while he was in the first ICU. Another day in the van and after that I was able to stay with him in the second ICU and then in Cardiac recovery unit. I've been doing all I can to care for him, lift him, bathe him, feed him etc. It's been really hard but he's done it all for me. In August we had renewed our 25th wedding vows in a church ceremony. As you can imagine fear got the better of me on a few occasions, I thank God every day for the Christmas gift of life he gave me (and him) for bringing him through it. The day of his surgery was the day the world was suppose to end. As he was being wheeled into surgery our sky lit up bright orange and a rainbow appeared. Our daughter was walking to work and captured it happening on her cell phone. It was like God saying... it will be okay and this is my sign to you. Our niece also captured a photo, a double rainbow, but without the sky turning orange. I miss you all. I've had to take leave from the work I do for the time being. Our son Kurtis got his drivers permit only days before we found out my husband needed the surgery after an angiogram. He's been our driver. My husband gets his staples out in 2 weeks. We both have doc appointments tomorrow. I see a Pulmonary Specialist at the end of this month. Previously scheduled for the same day as my husbands surgery which I had to post pone. My sleep study came back abnormal. Much love and care to all of you. ~Twinkle
Never had a diary before so this should be interesting
Never had a diary before so this should be interesting
|Yeah great news, mums okay||10/27/2008||464||0|
|get some good news and heaps of bad||10/22/2008||468||0|
|Just got too much going on in my head||10/14/2008||1393||2|
|Feeling pretty good||10/04/2008||460||0|
|Getting very frustrated||09/14/2008||513||1|
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