Melinda - i think the problem with our situation is quite the opposite from the first picture.. sometimes you see outside a totally normal person - which can't reflect the unbelievable pain that's inside !
by the way - liked the 2 last photoes :) thanks.
Melinda, thanks for sharing! I love the first one! I am so thankful that my family and friends can't REALLY feel my pain. I know that it makes it difficult for them to understand when they can't see it. I have shown this to my oldest daughter, we laughed. She and her family lived with us for almost a year. She had the opportunity to see what my life was like. She is now my first line of defense when I am in crisis. She manages the information, the meds and the doctors. The relief of knowing that someone is there has been huge. It took a lot of stress off of me. That plan has been set in place just since I joined this group. Thanks again for the "Face Pain Info"page!
I have read some very sad things here, very sad indeed. The last part of your comment being one of the saddest. I would like to say you are unique, I would like to but I would be lying. So many say something similar. For anyone interested, Red wrote a pretty powerful piece in the "Coping With Crisis" in the FACE PAIN INFO to print off and explain to your loved ones who don't "get" it.
It's small compensation but know we "know".
http://www.livingwithtn.org/page/reserved-tab-b#What
A link about explaining to loved ones.
Melinda Marie... said:
I felt the same way about that picture and almost didn't put it up. Then I looked at it again and related to the effort we put into projecting to others that we still are "normal". A funny side note is that my youngest son, who is now 12, still loves finding fun things to do with me when I'm stuck in bed...and making wall shadows just like that is a favorite!
Thank you Jackie. I have volumes of things I want to say, but as you know, that is easier said than done. I've always been a peacemaker, and have never been one to confront. Its so nice when someone handles the words for you. I appreciate your thoughtfulness in delivering it to me in a time of need too. I really appreciate it. I think you were the only one to see that post...I don't see it anywhere. Do you?
Jackie said:
http://www.livingwithtn.org/page/reserved-tab-b#What
A link about explaining to loved ones.
I don’t and I have no idea what happened to it. It was totally inoffensive so I cannot explain.
I don't know what happened but when I was sending Melinda an e-mail from this page, when I hit the send button, it said "post deleted". I never noticed if the post was gone from this page. I thought it was my e-mail that had been deleted. ??
Sara and Jackie...you are both so sweet! Your genuine concern with regard to my missing post is indicative of someone who truly "gets" it. People may relate to spending long periods of time trying to translate complicated thoughts into words-only to have them disappear into thin air without a trace - but have the energy or thought process to do it over. For me, it actually happens more often than not. Some days the process of trying to communicate anything consumes the entire day (and night) without any progress. Less frequently the process is as easy as breathing, and I pull out my lists of what I really want to do, which includes writing letters to loved ones and observation notes for a project or book. For some reason today I can laugh at myself and let it go. Maybe because you guys absorbed the UH-OH of it with your simple acknowledgment. Thank you.
PS...Sara...your suggestion that you may have been to blame for the unintended deletion was a nice gesture (but I think it was me). It did give me the perfect solution to my bad habit of shouting out vulgar phrases to my computer when stuff like that happens. I can just shout S A R A! Do you mind?
from sara -
I dont know what happened but when I was sending Melinda an e-mail from this page, when I hit the send button, it said "post deleted". I never noticed if the post was gone from this page. I thought it was my e-mail that had been deleted. ??
Shout on, Girl friend! While I am not at all eager for you to be frustrated.:-)) I say, "Party on!"
Melinda Marie... said:
Sara and Jackie...you are both so sweet! Your genuine concern with regard to my missing post is indicative of someone who truly "gets" it. People may relate to spending long periods of time trying to translate complicated thoughts into words-only to have them disappear into thin air without a trace - but have the energy or thought process to do it over. For me, it actually happens more often than not. Some days the process of trying to communicate anything consumes the entire day (and night) without any progress. Less frequently the process is as easy as breathing, and I pull out my lists of what I really want to do, which includes writing letters to loved ones and observation notes for a project or book. For some reason today I can laugh at myself and let it go. Maybe because you guys absorbed the UH-OH of it with your simple acknowledgment. Thank you.
PS...Sara...your suggestion that you may have been to blame for the unintended deletion was a nice gesture (but I think it was me). It did give me the perfect solution to my bad habit of shouting out vulgar phrases to my computer when stuff like that happens. I can just shout S A R A! Do you mind?
from sara -
I dont know what happened but when I was sending Melinda an e-mail from this page, when I hit the send button, it said "post deleted". I never noticed if the post was gone from this page. I thought it was my e-mail that had been deleted. ??
Gooood Morning.... SARA...Im lost with these formats! I have something to share with you so I have to figure out HOW. Facebook? I try to keep a healthy attitude there because it gets complicated with people close to me that have been less than supportive. I don't know who sees what....especially when Im tired.
Sara said:
Shout on, Girl friend! While I am not at all eager for you to be frustrated.:-)) I say, "Party on!"
Melinda Marie... said:Sara and Jackie...you are both so sweet! Your genuine concern with regard to my missing post is indicative of someone who truly "gets" it. People may relate to spending long periods of time trying to translate complicated thoughts into words-only to have them disappear into thin air without a trace - but have the energy or thought process to do it over. For me, it actually happens more often than not. Some days the process of trying to communicate anything consumes the entire day (and night) without any progress. Less frequently the process is as easy as breathing, and I pull out my lists of what I really want to do, which includes writing letters to loved ones and observation notes for a project or book. For some reason today I can laugh at myself and let it go. Maybe because you guys absorbed the UH-OH of it with your simple acknowledgment. Thank you.
PS...Sara...your suggestion that you may have been to blame for the unintended deletion was a nice gesture (but I think it was me). It did give me the perfect solution to my bad habit of shouting out vulgar phrases to my computer when stuff like that happens. I can just shout S A R A! Do you mind?
from sara -
I dont know what happened but when I was sending Melinda an e-mail from this page, when I hit the send button, it said "post deleted". I never noticed if the post was gone from this page. I thought it was my e-mail that had been deleted. ??