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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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11-29-2009, 07:35 AM | #1 | ||
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This will be short. I have posted many personal experiences and pictures recently to help others and at the request of others. And not one person wrote so much as a thank you. some of these pictures were very personal. It was very hurtful that although 60 to 70 people viewed the post no one was kind enough to place a comment. that is why I removed them.
I have noticed many post with "0" comments. I try to find those and at least thank the person for posting , even if I can not help them with their subject. This has happened many, many times to me. I must be doing something wrong. the lack of support is very hurtful. |
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11-29-2009, 07:54 AM | #2 | |||
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Dear CZ -
I will admit to being away from the board for days at a time, but quite frankly I have no memory of the posts you are referring to. That said, I know that sometimes I will open (anyone's) post and not comment on it, simply because I just have only a little time and/or energy to look at the board and don't think there is anything I could contribute that would be meaningful. But please don't take it as anything personal. I learned a long time ago that some of my threads take off and others drop like a stone, for reasons that I generally can't explain. Just is/are. Mike |
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"Thanks for this!" says: | CZZ74 (12-10-2009) |
11-29-2009, 09:43 AM | #3 | |||
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I didn't see the posts either, but isn't this board viewable by guests too - they don't even have to register to be able to read, so the post count you saw isn't necessarily all from posting members.
Also, you have to give people a few days at least (time zone issues and such) to be able to write something. How long were your posts up for? This isn't a chat room after all. Giving people enough time is essential. And BTW, I have placed a post to important European research recently to which no one reacted either. No reason for me to remove it, though. I understand it's a little different when posting very personal pictures. But... I didn't see any such posts... so how long were they up for?
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All the best, Marleen ===================== Work related (car) accident September 21, 1995, consequences: - chondromalacia patellae both knees - RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008 |
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"Thanks for this!" says: | CZZ74 (12-10-2009) |
11-29-2009, 11:03 AM | #4 | |||
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Magnate
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Like Michael, I don't contribute to all of the threads. It's hard for a person to do them all when they can't sit at the computer for too long. I just spent a month off of here to get to feeling better and regroup with my Drs. and my health issues. A lot of us do go off when we aren't feeling our best.
I didn't see the threads of yours either. I did see where you went in and took them off and was wondering why. The people on here are really good about answering what they can. A couple of years ago, I wouldn't have said that but now we have a lot of good people on here that will answer what they can. I don't start threads much due to my health issues not always being about RSD. I have asked a couple of questions and got no answers so I just assumed it was out of the rhelm of what the people would know about it. Other times I do get help on non related threads. I noticed too it seems a lot of people are off of here and have been off for awhile. They come and go until they can get to feeling better or get their life in order otherwise. I'm sorry you feel you didn't get the answers you wanted on the thread but put them back on and give people here the time to answer them. Some times it takes days for some post to get answers. Ada |
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"Thanks for this!" says: | CZZ74 (12-10-2009) |
11-29-2009, 02:23 PM | #5 | ||
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I had my first lesions last year, and it was awful experience. I remember looking at some pictures, but it was a year ago. Mine got infected and lasted so long. I also took pictures to take to my Dr. It was awful, I hope neither of us or anyone has that experience again. I've had this 15 years and am planning on going thru HBOT in the spring.My Dr. just built 2 clinics with HBOT in each of them-about 10 min. away. Hope you have escaped the h1n1, my husband has been sick for 3 weeks. He thinks it's sinus problems-No fever. We live in Arizona, which I know is better for me than Oregon. The cold, rain, snow, is about 9 months out of the year. So I'm grateful we moved here. I don't remember if you have mentioned what part of the country you live in. I know cold, wet weather doesn't do us any good. I'm going to California next week. Supposed to be 70 the 4 days I'll be there. Yesterday it rained, and was in bed all day. Our daughter and son in law are going too-a seminar on a new healthy energy drink that is coming out in Dec. The 3 of us are marketing some healthy products. They have regular jobs-my daughter is a court reporter- and son in law a commercial pilot. My husband is having trigger point surgery on a finger Wednesday. I'm scared for him. I know that is one of the surgeries that can be the catalyst for RSD. Mine came right after surgery, but wasn't diagnosed for 4 years. Hope this has been a good weekend for you. Please know you are valued here and appreciated. Take care, loretta with soft hugs |
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11-29-2009, 03:34 PM | #6 | |||
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Dear CZ,
I too am sorry that you feel hurt. Unfortunately I don't have the time to read every members postings. If I can relate to the subject heading I will try to read the posting, that being said there are many days when I'm just not up to the full task, some times I and don't come to the forum for days at a time. I like to use the "THANKS" button, it allows me to let the poster know that I've read their message and appreciate their contributions. According to your profile statistics you have been thanked 203 Times in 113 posts. Quote:
It is unfortunate that I missed a few of your postings lately. I hope you will reconsider and share your information under your profile with your friends. MsL |
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12-13-2009, 08:59 AM | #7 | ||
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we all have down days, I was having one, be it that I am stupid or what else, it took me forever to learn how to post pictures. So this in partiucarly hit a nerve. There are many people here,whose posts and have a 0 response. I was not just speaking out for my self. Id like to end this and all posts on ths note by thanking those that wrote sincere, notes acknowledging the hurt i was feelling, offered support and were so warm and sincere. I was not seeking defensive responses or agressive responses.As I said I was just having a particuarly bad day as many of us do. wishing everyone a better day and less pain. cz |
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"Thanks for this!" says: |
12-13-2009, 01:05 PM | #8 | |||
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I honestly felt very badly that I had missed your post and I must have been having a bad day myself because I when I read back what I wrote I did not mean for it to come out that way. I was wrong in how I worded my reply to you and I hope you will forgive me. MsL |
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12-13-2009, 03:29 PM | #9 | ||
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"Thanks for this!" says: | Mslday (12-13-2009) |
12-13-2009, 04:04 PM | #10 | |||
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I believe it is not due to any lack of great, compassionate, wise folks on site. Just my luck of the draw in this life. Thank you for verifying that for every post I thank, or send a validating message, there are possibly grateful, warm hearted appreciative folks, (hopefully anyway). Conversely it is likely I often add unwittingly to the burden of lonely folks who often feel isolated and hurt, by offering only silence. I will continue to try and reach out when I am able. I hope others will do the same for me. I know there are no guarantees. I cannot expect to "derive" compassion by giving it to others. But it is important to give it anyway. For myself, to offer without expectation, is the least harmful to my own self esteem. I hope you do feel heard and understood by the many responses here We never really know how we affect others in sometimes amazing ways. So again Thank you for expressing what many often feel , but may not always share. A chance for all of us to check in with ourselves. Are we giving what we would like for ourselves with realistic integrity? I often have to remind myself that holidays are often especially challenging and triggering for many stuck in the "chronic condition caravan" and the slow lane of life. Including myself... Best wishes TT |
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"Thanks for this!" says: | Kakimbo (12-15-2009) |
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