Originally Posted by tinglytoes

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

Originally Posted by CZZ74

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

Originally Posted by keep smilin

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..

Originally Posted by loretta

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

Originally Posted by CZZ74

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.

Originally Posted by denise18

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

Originally Posted by SandyRI

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