Question:
I have been at a loss for words, struggling for the right thing to say about watching Fred’s film, “My Skin’s on Fire”. Firstly, I felt very honored to be a part of a group to preview the rough draft.
I brought along my boyfriend and my sister (both non-psoriasis sufferers). My sister has always been supportive of me but still did not really know the extent of how psoriatics feel emotionally and physically. She had a lot of positive things to say about this film and the importance of this film to be available not only to people with p but to the general public that may not even know what this skin disease is about.
I write this thread to open myself up to feeling that I had no emotional support from a loved one. My bf was very silent throughout watching this film and I decided to pin his silence as him being “bored” and not interested….what else was new? I became angry that I even thought of bringing him once again to a meeting or anything that involved me and my psoriasis. I became silent and didn’t even know what to say! Even when I was so moved by the many testimonials by Brenda, Diana, and when I started to cry watching a very poignant scene with Jody and Gene, I felt I had no emotional support from him as he sat there with his arms crossed!!
Little did I know that this very successful man that seemed to know everything about anything…was for the first time…at a loss for words….for this was an area that he truly knew little about. He always took pride in being able to take care of things in not only his life but others as well…and for the first time, he just didn’t know how to “fix” my psoriasis.
Through our many “uncomfortable silences” while driving in a car, suddenly on our long drive home, he opened up that Fred did an amazing job with this film and never realized the ramifications of this disease and how it affected not only me but also other men and women of all ages. He himself admitted he held back tears when a baby was shown with p. He also agreed with what my sister had to say about not really knowing much about his disease and how the public needs to see this more so than just psoriatics. For the first time in 4 years, I saw this man as being “human” again, taking a delicate peek into how my life with psoriasis has been, and realizing my emotions are real and validated. I realized his silence was only ignorance and his way of really taking things in and learning about this disease. He truly did not know what to say after watching this film until he and I were alone and he was able to voice his questions, his concerns and his love for me, regardless of my p.
So, as I also email this to Fred as well, thank you so much- for this was a very important film to watch and it even brought a breakthrough in my own relationship with my boyfriend. I even let him see my bare arms that night to let him hug me….for the first time in 7 months.
:o
aloha,
Abby
Abby,
I was a little concerned when I began reading this post...I was worried that things went in the other direction!
However, I am glad this film helped bridge the gap between the two of you. My thoughts about how he reacted throughout the film may be sexist, but hear me out. I think men simply have a tendency to not show their emotion to a very emotional issue, and that may be the way he was handling it. I hope that you let him know (for your sake) that if he is at a loss for words, or even not sure how to respond in his own right, he should feel comfortable enough to make contact with you just so that you receive the reassurance that is so necessary when sharing something so delicate.
Take care sweetie! ;)
Diana
is this film going to be avalible to the public? i need my husband to see it. He has no idea what i go through everyday...
Anyone have info on the details as in when, where, etc as in will the film will be available for purchase? I have a few dozen people who I think would benefit from seeing it. Sounds awesome!
hey... on the website.... www.skinfire.org... does anyone have an idea as to how i can view the preview thing? I keep trying, but it wont work!!
*hugs* abby im so happy for you!! there are times i feel my family really doesnt know what i go through. They can see it at times, but aside from physically, emotionally im a big mess!!
My sister said she wished there was a film like this for Eczema patients. I guess it goes both ways. Im so into my P and PA, i forget she has real feelings about her Eczema (esp when she has a small flare) and i tend to over look them myself.
Fred is simply wonderful. Diana, ofcourse, made me cry (again). Di, you were seriously the shining star to me. You spoke so well, and i did see the starts (or ends) of tears in a few of your segments.
Jodes and Gene made me speechless, the amount of devotion and love you too have. If i can hav half of what you 2 share, i'd consider myself lucky!
I hope soon everyone will have the chance to see this!
hey Kim, I went to the website, hit the download button, and nothing happened, then a couple minutes later it started, try giving it a few minutes, usually things start right away for me but this was really slow..maybe the sites busy..... hth.....
it's awesome, hope you get to see it...
I believe that details on the release of the film and how to see it will be coming out in the next month or 2. I'm pretty sure most of us will get a chance to see this wonderful documentary that I really look forward to. :) So many of us have had a little piece in it although Fred has done the artistic and hard work, and I'm sure it's going to touch us all very deeply. It sounds like it's the story of all of us.
Diana, ofcourse, made me cry (again). Di, you were seriously the shining star to me. You spoke so well, and i did see the starts (or ends) of tears in a few of your segments.
Funny, I noticed my eyes a little shiny in some cuts too. Thanks for the kudos, I thought you and Jody's segments were awesome as well...ain't this just one big love-fest?!? :p
To all who are anxiously awaiting this film, from what I gather from Fred, this was a final "rough" cut of the film, and he does want to get it into production and distribution as soon as possible. There will be copies made available to support groups as well. Unfortunately, I don't have much more information on this...and don't want to go on spouting information that I am unsure of.
Keep your eyes peeled though, we (Jody, Brenda, myself) will most definitely post updates to the status of availability of this film, as we are anxious of getting our hands on it as well! :D
Diana
i went to the site and read through the web site...i noticed the dates were 2003 and 2004 ...my question is ..do you guys still need donations to get this fully into swing?...
i would be happy to send some money for this production...i am sure alot of others would too...
please let us know...thanks linda
I can't wait to see the whole thing. That will be great to have.
Polly
...my question is ..do you guys still need donations to get this fully into swing?...
i would be happy to send some money for this production...i am sure alot of others would too...
please let us know...thanks linda
Linda,
As I do not know the answer to your question, I would recommend contacting Fred directly at freddy5@mindspring.com. he should be able to answer you! :)
Thanks for bringing up this question though!
Diana
i did just that...waiting on his reply...thanks ....linda
here is part of an email that Fred sent to me. maybe he has already emailed you as well.
I hope everyone gets to see this film, Diana and Brendalynn and of course Jody were fabulous! Even seeing MikeK and PJ, Mitch, Steve, and all the pics at CHD!
Abby
FROM FRED:
. I approached the NPF about 3 years ago with the idea, they gave me some 'seed' money to get started ; then I wrote a grant and submitted it to the Bay Area Video Coalition and they awarded me 'fiscal sponsorship', which allowed me to raise money from tax-deductible contributors (almost anyone); my family helped me initially and that got me some equipment. . money started to trickle in over the next year, and then I was approached about a year ago from some medical pr people in LA who were representing Genentech. . and the rest, as they say, is history. .
we still have some changes to make - probably we will shorten the film by atleast 4 or 5 minutes, but essentially it will remain as you saw it. . . I hope to show the completed version to the group once again, probably in the fall. . stay in touch, Abby, and thank you again for your kind words. Best Regards, Fred
Oh yeah, I remember now...(looking in nearest mirror).
Gene
He always took pride in being able to take care of things in not only his life but others as well…and for the first time, he just didn’t know how to “fix” my psoriasis.
hi gene,
welcome to the p family. you will met alot of wonderful people on here and find alot of great info. welcome and nice to meet you.
have a good day all
richard
Oh yeah, I remember now...(looking in nearest mirror).
Gene
wonderful insight...
I guess sometimes we just don't really know how our loved one's are really thinking until we see something like this. As Fred had emailed to me, "a testament to the power of the media to provoke, stimulate and move people"...this film did just that.
Again, as I said to you at the viewing, the interviews with you and Jody were so compelling. It brought me to tears. The two of you are so wonderful together, it is so nice to see that love and support you two have for each other. Slowly and hopefully one day, I can get that whole support as well from my significant other...."baby steps" as they say?
aloha,
Abby
abby...yes i did recieve an e-mail from fred too...he told me that the film should be ready around mid-september...i cant wait to get my copy...he also said they didnt need anymore donations to finish the film...but i think i will make another donation to the NPF anyway....linda
that's great about making another donation to the NPF...I hope you are able to see this film soon along with your husband....I can't stress the importance of all of our "significant others" to see this film to really realize our emotional feelings as far as this disease... :o
Abby
I brought along my boyfriend and my sister (both non-psoriasis sufferers). My sister has always been supportive of me but still did not really know the extent of how psoriatics feel emotionally and physically. She had a lot of positive things to say about this film and the importance of this film to be available not only to people with p but to the general public that may not even know what this skin disease is about.
I write this thread to open myself up to feeling that I had no emotional support from a loved one. My bf was very silent throughout watching this film and I decided to pin his silence as him being “bored” and not interested….what else was new? I became angry that I even thought of bringing him once again to a meeting or anything that involved me and my psoriasis. I became silent and didn’t even know what to say! Even when I was so moved by the many testimonials by Brenda, Diana, and when I started to cry watching a very poignant scene with Jody and Gene, I felt I had no emotional support from him as he sat there with his arms crossed!!
Little did I know that this very successful man that seemed to know everything about anything…was for the first time…at a loss for words….for this was an area that he truly knew little about. He always took pride in being able to take care of things in not only his life but others as well…and for the first time, he just didn’t know how to “fix” my psoriasis.
Through our many “uncomfortable silences” while driving in a car, suddenly on our long drive home, he opened up that Fred did an amazing job with this film and never realized the ramifications of this disease and how it affected not only me but also other men and women of all ages. He himself admitted he held back tears when a baby was shown with p. He also agreed with what my sister had to say about not really knowing much about his disease and how the public needs to see this more so than just psoriatics. For the first time in 4 years, I saw this man as being “human” again, taking a delicate peek into how my life with psoriasis has been, and realizing my emotions are real and validated. I realized his silence was only ignorance and his way of really taking things in and learning about this disease. He truly did not know what to say after watching this film until he and I were alone and he was able to voice his questions, his concerns and his love for me, regardless of my p.
So, as I also email this to Fred as well, thank you so much- for this was a very important film to watch and it even brought a breakthrough in my own relationship with my boyfriend. I even let him see my bare arms that night to let him hug me….for the first time in 7 months.
:o
aloha,
Abby
Answers:
Abby,
I was a little concerned when I began reading this post...I was worried that things went in the other direction!
However, I am glad this film helped bridge the gap between the two of you. My thoughts about how he reacted throughout the film may be sexist, but hear me out. I think men simply have a tendency to not show their emotion to a very emotional issue, and that may be the way he was handling it. I hope that you let him know (for your sake) that if he is at a loss for words, or even not sure how to respond in his own right, he should feel comfortable enough to make contact with you just so that you receive the reassurance that is so necessary when sharing something so delicate.
Take care sweetie! ;)
Diana
Answers:
is this film going to be avalible to the public? i need my husband to see it. He has no idea what i go through everyday...
Answers:
Anyone have info on the details as in when, where, etc as in will the film will be available for purchase? I have a few dozen people who I think would benefit from seeing it. Sounds awesome!
Answers:
hey... on the website.... www.skinfire.org... does anyone have an idea as to how i can view the preview thing? I keep trying, but it wont work!!
Answers:
*hugs* abby im so happy for you!! there are times i feel my family really doesnt know what i go through. They can see it at times, but aside from physically, emotionally im a big mess!!
My sister said she wished there was a film like this for Eczema patients. I guess it goes both ways. Im so into my P and PA, i forget she has real feelings about her Eczema (esp when she has a small flare) and i tend to over look them myself.
Fred is simply wonderful. Diana, ofcourse, made me cry (again). Di, you were seriously the shining star to me. You spoke so well, and i did see the starts (or ends) of tears in a few of your segments.
Jodes and Gene made me speechless, the amount of devotion and love you too have. If i can hav half of what you 2 share, i'd consider myself lucky!
I hope soon everyone will have the chance to see this!
Answers:
hey Kim, I went to the website, hit the download button, and nothing happened, then a couple minutes later it started, try giving it a few minutes, usually things start right away for me but this was really slow..maybe the sites busy..... hth.....
it's awesome, hope you get to see it...
Answers:
I believe that details on the release of the film and how to see it will be coming out in the next month or 2. I'm pretty sure most of us will get a chance to see this wonderful documentary that I really look forward to. :) So many of us have had a little piece in it although Fred has done the artistic and hard work, and I'm sure it's going to touch us all very deeply. It sounds like it's the story of all of us.
Answers:
Diana, ofcourse, made me cry (again). Di, you were seriously the shining star to me. You spoke so well, and i did see the starts (or ends) of tears in a few of your segments.
Funny, I noticed my eyes a little shiny in some cuts too. Thanks for the kudos, I thought you and Jody's segments were awesome as well...ain't this just one big love-fest?!? :p
To all who are anxiously awaiting this film, from what I gather from Fred, this was a final "rough" cut of the film, and he does want to get it into production and distribution as soon as possible. There will be copies made available to support groups as well. Unfortunately, I don't have much more information on this...and don't want to go on spouting information that I am unsure of.
Keep your eyes peeled though, we (Jody, Brenda, myself) will most definitely post updates to the status of availability of this film, as we are anxious of getting our hands on it as well! :D
Diana
Answers:
i went to the site and read through the web site...i noticed the dates were 2003 and 2004 ...my question is ..do you guys still need donations to get this fully into swing?...
i would be happy to send some money for this production...i am sure alot of others would too...
please let us know...thanks linda
Answers:
I can't wait to see the whole thing. That will be great to have.
Polly
Answers:
...my question is ..do you guys still need donations to get this fully into swing?...
i would be happy to send some money for this production...i am sure alot of others would too...
please let us know...thanks linda
Linda,
As I do not know the answer to your question, I would recommend contacting Fred directly at freddy5@mindspring.com. he should be able to answer you! :)
Thanks for bringing up this question though!
Diana
Answers:
i did just that...waiting on his reply...thanks ....linda
Answers:
here is part of an email that Fred sent to me. maybe he has already emailed you as well.
I hope everyone gets to see this film, Diana and Brendalynn and of course Jody were fabulous! Even seeing MikeK and PJ, Mitch, Steve, and all the pics at CHD!
Abby
FROM FRED:
. I approached the NPF about 3 years ago with the idea, they gave me some 'seed' money to get started ; then I wrote a grant and submitted it to the Bay Area Video Coalition and they awarded me 'fiscal sponsorship', which allowed me to raise money from tax-deductible contributors (almost anyone); my family helped me initially and that got me some equipment. . money started to trickle in over the next year, and then I was approached about a year ago from some medical pr people in LA who were representing Genentech. . and the rest, as they say, is history. .
we still have some changes to make - probably we will shorten the film by atleast 4 or 5 minutes, but essentially it will remain as you saw it. . . I hope to show the completed version to the group once again, probably in the fall. . stay in touch, Abby, and thank you again for your kind words. Best Regards, Fred
Answers:
Oh yeah, I remember now...(looking in nearest mirror).
Gene
He always took pride in being able to take care of things in not only his life but others as well…and for the first time, he just didn’t know how to “fix” my psoriasis.
Answers:
hi gene,
welcome to the p family. you will met alot of wonderful people on here and find alot of great info. welcome and nice to meet you.
have a good day all
richard
Answers:
Oh yeah, I remember now...(looking in nearest mirror).
Gene
wonderful insight...
I guess sometimes we just don't really know how our loved one's are really thinking until we see something like this. As Fred had emailed to me, "a testament to the power of the media to provoke, stimulate and move people"...this film did just that.
Again, as I said to you at the viewing, the interviews with you and Jody were so compelling. It brought me to tears. The two of you are so wonderful together, it is so nice to see that love and support you two have for each other. Slowly and hopefully one day, I can get that whole support as well from my significant other...."baby steps" as they say?
aloha,
Abby
Answers:
abby...yes i did recieve an e-mail from fred too...he told me that the film should be ready around mid-september...i cant wait to get my copy...he also said they didnt need anymore donations to finish the film...but i think i will make another donation to the NPF anyway....linda
Answers:
that's great about making another donation to the NPF...I hope you are able to see this film soon along with your husband....I can't stress the importance of all of our "significant others" to see this film to really realize our emotional feelings as far as this disease... :o
Abby
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