venting
 

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.

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

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?

Hi CZ,
 

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

Hi CZZ74, I'm so sorry you have been hurt. You have been with the forum a long time and made LOTS of posts. We all have benefited from your experiences and learned from you. You are appreciated!
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:grouphug:

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.

I've posted a picture of myself on my personal profile and unless you are a friend of mine you can't see any of my photos. I used the privacy settings to make sure I wasn't wide open to the whole Internet. Since you and I are linked as friends you have access my photos. Personally I feel more comfortable with that privacy option. As mentioned we do have a lot of drive by visitors here.

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 :grouphug:

I'm so sorry that your feelings were hurt. That's a bummer, especially since you took the time to post personal pictures which were meaningful to you.

I believe that I recall that you had problems with lesions. I also seem to remember that you went to Germany for the K coma. (am I right on that?) I don't always hit the "thanks" button, I honestly didn't know you were supposed to do that all the time. I can see now that it can appear thoughtless when you don't, though. Thanks for pointing that out, and I will keep that in mind next time someone does post such information on this board.

It is good that we are all reminded occasionally that unless we respond to each other's posts, that person doesn't always know that "we," each other's "friends," have seen them. And we are all here for each other. By responding we are giving each other support.

Please know that I care, and truly hope that you feel better soon.

XOXOX Sandy

CZ, I'm sorry your feelings are hurt. I had looked at your pictures and was going to try to figure out how to post pics of mine. Yours appear lareg and very painful. Mine are numerous, small but still hurt. I got destracted because I had surgery for melanoma yesterday. I caught it early because it runs in my family. I'm one who does reads alot but makes few posts and this is a good reminder I should make some kind of acknowledgement. I was thinking of starting a thread to see if anyone else has dealt with cancer and rsd. I would be upset if noone respondedtoo. I wasn't sure how to find any old posts on cancer without going through all of them. take care Denise

thank you for your warm response Loretta
 

Loretta, thank you so much for this post. It was really kind of you to mention my previous posts, I really appreciate it. I am wishing you the absolute best with HBOT , it has helped so many people. It seems even if it is not a cure it offers a great deal of relief. i will be praying that is the result for you to .
i live in Orlando, and have a great deal of problems iwth the weather, particularly in summer and hurricane season. i imagain we are both in bad spots for rsd.Good luck to you I will be watching for posts on your progress. Again I cant thank youenough for the kind post. God bless, CZ

Hi I was posting to those that do not respond not to those that do. and particuarly not to you who I pm. thanks for the recap of "hank yous."Kind of a recrimination post.
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

Thank you Denise,
 

Denise, thank you for such a kind post. I really appreciate it. I am really frightened for you having had the melanoma surgery. It is certainly something to take seriously and stay on top of from here on out. My husband had two removed from his arm last year. I think you post idea is a great one. I believe in the puzzles that it mentions in stage 4 cancer is not uncommon. i think it is something many of us worry about along with stroke and heart attacks with rsd but dont like to talk about. I would be very interseted to see the response, thank you again Denise from the bottom of my heart for your empathy.. Sincerely, cz

Sandy, thank you so much.
 

Sandy, thank you so much for the support I did need it , im been having a really rough time. How nice of yur to remember that I was in Germany for the Coma treatment.
I appreciate the nice note so much and the well wishes, It means alot. i guess with things progressing steadily Im just getting a bit too down. this type of support helps alot and I sincerly appreciate it. I'm not really a whinner, i was just having a particuarly bad day. I hope things are going well for you. Please let me know if your up to it. My very best to you , God bless, cz.

Dear CZ,

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

You surprised me and I do understand,
 

Msl, thank you so much, I am so sorry to hear you are having a bad day too. I know it seems like the anguish we have will never end sometimes. I understand it did not come out the way you meant it- happens to me all the time, thank you for straigtening it out for me- I really appreciate it. I hope your day and week gets so much better, thank you for everything, sincerely, cZ

Bad days and feeling unheard...
 

HI there, CZ. I can so relate to your post of dismay and hurt. It is hard to expose our vulnerability to "thundering silence". I likely was baffeled by your symptoms or diagnosis and simply skipped over it. Now I am reminded that I too have a complicated disease which is truly a rare disorder. I feel lonely and unseen here quite often, some posts exploring my options are too unknown for any responses.

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 :hug::)

Dear CZ,

I so happy you understand and forgive me. Honestly I felt horrified when I realized that I came across the way I did and especially how it made you feel. I sincerely want to thank you for being so thoughtful and supportive.

I hope you have a good day and week too.
MsL

Thank you TT for sharing your thoughts
 

Thank you so much for sharing your thoughts, some very thoughtful messages and so beautifully written, I am hoping you are a writer or are considering it. Id love to be a writer but you definitley have a gift, you did state every message in your post with such integrity, Thank you so much for the encouragement and I will definitely continue to be part of giving on the board. thank you again, cz

[QUOTE=Mslday;599384]Dear CZ,

I so happy you understand and forgive me. Honestly I felt horrified when I realized that I came across the way I did and especially how it made you feel. I sincerely want to thank you for being so thoughtful and supportive.



I hope you have a good day and week too.
Please dont think of it again, Im thinking nothing but good thoughts towards you especially and all others . Happy Holidays MsL, I can not belieive they are almost here already my very best, cz

Czz74
 

You are entitled!! We all have those days..why I am having one of those right now... It is always nice to get sincere support..I believe we all need it.. RSD has no sense of humor and we certainly need to feel loved..Well, you are loved on this site..we pull for each other and care... No worries, as you had a bad day..Next time it will be me!! Take care and we have your back.. :hug:

keepsmilin, you made me smile!
 

keepsmilin, you made me smile! what a great message for me to start the day with . thank you so so much for your kindness and understanding, I love that you said "RSD Has no Humor",, so true and you remind me how important humor is if you can get to it through a day with this. thanks again for the warm support, i hope you will have a good day to day. sincerely, cz

Smiles...
 

are free and simple..they warm our hearts and let us know we are loved... CZZ74..and others here.. we got eachothers back.. I want to share this saying... as it brings tears to my eyes....

Life is not waiting for the storm to pass.... Life is about learning to dance in the rain...


We are all learning to do that as we have to.. but along the way as we learn dance..we feel loved.. which is so important!!!! thanks to eachother!:grouphug: