You may already know this but many of the immune/ inflammatory things have to do with a build up of environmental chemicals in our bodies, the same thing that causes global warming is poisoning us. Detox stuff has been very helpful for me, and cleaning up my personal space, elimination of interior toxins, adding air filters etc... Just a thought. There are many very effective detox methods out there many of which I use daily, let me know if you ever want to talk. Ann
I saw your post, I'm so sorry. It's even harder for those of us who are butch given the whole mythology around physical strength. I don't know what to say about the identity thing, it's hard. I'm in construction and it kills me that I have to have help with things that used to be no big deal, it's easy to forget who I am.
My daughter has JDM. She is now in remission. Watching your video gave a little insight as to how she might feel. She doesn't talk much about JM. While her disease was active she wore a medical alert bracelet. One day she took it off and I have never found it.Now I know it made her feel like she was branded, different from other little girls her age. My thoughts and prayers are with you.We used to live in Upstate NY and moved to WA State.We lived here five months when she fist had symptoms.
Stacey, im going through yr videos, so im figureing yr now almost 41?, like to know where yr at now & if things are looking up?, you know a very famous Lady called amelia earhart cioned a phrase, "the most constant thing in life is change", therefore nothing stays the same forever, this quote is an absolute, id really care to know where you're at today!, i understand Disability, its my qualification in life, yr body may not do what it used to but yr minds sharp as a tack, "Write A Book", : ). BT
I just watched several of your videos and had to watch this one! I have Multiple Schlerosis and can't work and am now fighting with a lawyer to get SS at age 37! It sucks so bad, especially when bills and chores around the house stack up!
I have "alot" of hobbies I do to keep my mind busy. I guess I just wanted to let you know, I cried with you because it was like a page out of my own life!
I empathize with you Stacy, it's not easy knowing you have a disease.... but just remember you are not the disease, it is something you have. I'm not on disability with my disease, but I found out I had it when I was 29 and it has disrupted and re-wrote every part of my life. It hasn't been nor is it now... easy. I just take it one day at a time.
Keep your chin up, we are here with you, to listen, to help any way we can.
Disease really has a way of shaking one's Etch a Sketch. Maybe you don't have to fill the picture of your future back in all at once. Maybe you can do it one week at a time. You keep speaking in terms of 'half my life',...that is overwhelming and possibly inaccurate and certainly a huge wallop on the psyche. None of us are even guaranteed another half, so please, find some way to enjoy today. Please. I'm so sorry you are this down.
Sweetie, I can relate to everything you said - it's hard to find people who "get it". One day at a time... one painful step at a time. You aren't alone. Joanie (a new subscriber)
I can somewhat relate. I was on workman's comp for almost 7 months and it drove me crazy. Fortunately I was able to return to work. Hopefully you will find your way. Life is difficult enough but with no direction it can be almost impossible. Hears to hoping you find your way.
I really feel for Stace. I can't imagine what that is like, but I want to say that I think you are an active part of THIS community, the youtube community, and I know I look forward to your posts. So keep up the good work on here, and I really hope things get better for you.
I confess I wasn't able to get sound on this, but based on Steph's and Henrik's video replies, I think I got part of the message here.
Just wanted to say that I enjoy stopping by your channel and watching your videos when I can. You bring something unique and VALUABLE to the table here. So please don't stop doing that.
YOu need to list the things that you have in your life that are blessings. YOu home,your comuter,your looks,your furniture then list your Cons and see the difference in the size of the two lists and go from there. PLEASE.
You gotta find it Stacy or you will lose your soul. You ARE only 39,yes you are disabled,yes you struggle but thank god you aren't in a gutter somewhere addicted to drugs or alcohal or homeless or starving or dying of AIDS or cancer or in Sudan or Darfur or Ethiopia.
You CAN be productive in so many other ways. Volunteer to visit the elderly,you being here on youtube i'm sure is helping people too. But you have to find the drive inside of you for something. Fishtanks? They can be so relaxing and fun to decorate and maintain a little at a time.
You have to find in yourself everyday when you look in the mirror that you are a wonderful part of this earth you have to feel it in yourself in order to live it. If you don't feel that in yourself you need to figure out why.
I know how debilitating things are too. But in order to lift yourself you need to make sure you are doing something at home. Painting,cooking,baking,crafts,gardening,flowers,canning,sewing,knitting etc.
thanks for you note...i am looking into options...my muscles hurt sometimes making everthing tough...but i am on meds again and they have kicked me...i am so happy :)
Stacy, thanks for sharing your story. I hadn't checked out your channel until I saw stephstance's response to your vid. Well, my thoughts are that it'll probably be best to not allow a job to define your life since life has changed. Volunteer work when you are able can always be a source of support. Just a thought. Write back if you'd like.
I got much the same when I was diagnosed with ME. I used to work lots of hours and I still found time for my water ski-ing etc but suddenly it stopped!
Guilt is a terrible thing but we do have it because we are not paying our taxes - Depression is kept in check with Prozac.
Stacy, I cant tell you how much I relate to ya. I have no clue if I will ever be able to work again with my knee injuries. Its been since Aug '05 for me. I sooo get your struggle. Its a hard thing to get used to saying that you do not have a job, I know. It will be okay though, somehow, someway for the both of us :) We will find other great things to do. Look how many people you are helping and inspiring on here. :) -patty
i don't "know" you, and i don't know why but i honestly do believe in you - i just truly hope that you believe in yourself. once you leave your depression - you'll be able to see the beauty of your life again. my advice: start with taking even more baths. and when your feeling down, don't forget to find a way to smile. xoxo
Of course I don't know you well but just by seeing you for the past month or so I see your gifts of intelligence, kindness and insightfullness. Very valuable traits for many lines of work. Something will come your way. Because of his disability a family member couldn't hold down a job for more than a few weeks. Now, with a newer medication he's been at the same job for 3 years. Hang in there, you never know what's around the bend.
you remind me of my lesbian sister, she and I are the gay kids out of 8......luckily we've always had open /loving parents...your condition almost sounds like LUPUS ...keep a good additude,try anyways. Rex
I am also sorry for your struggle. No one knows what it's like unless they too are going through it.
But from the comments it looks like many empathize. Some may think people take YouTube way too serious, but it can be a great support system. I wish you good luck. I'm sure you'll find your way.
WOW! you have NO idea how much I feel you girl! I am also on disability. I want to be your friend. I've been a quiet subscriber of yours for some time now...But I don't want to be quiet anymore. I adore you.
Wow, probably the most heart-felt thing I've watched on YouTube. I don't have any magic words, Stacey, but I can say that you have an incredibly sweet and positive disposition. Many people would let their disability consume them, but that won't happen to you given what an uplifting spirit you have. There will be rough days, but you'll come through this. Remember--I have the magic 8 ball. ;-)
i found your video through stephstance. i dont have anything to say that will help you, but i just wanted to let you know that this video really touched me. i'm so sorry to hear about your struggle.
We have a lot in common. We have a different diagnosis, but the same story. Chin up. Life is UNPREDICTABLE. As long as there is breath, there is hope. :D
Gosh Stacy, what a difficult blow. My mother's best friend has the same condition. Her life did change dramatically, but she was able to rebuild and is now coping quite well. Keep the faith. You'll find your way, and you have good friends here who care.
Stacy, you are amazing. I can't even imagine what you're going through but all I can say is stay strong. You will find your calling, it just takes time. When it seems impossible you just need to carry your faith on. Faith is the on thing we have on this earth. If you believe in yourself and just carry on, It, what ever it may be, will come to you.
Gosh, that took guts. I also sucks. I can't relate, but I can empathize but it sounds like you need to keep the faith yourself. From what I have seen and heard here, you seem like avery wise and compassionate person who has a lot to give (maybe more than you realize). I, and I am sure many others appreciate your perspective on things. Hang in there and I am sure you will discover your second life. Meantime may your days be filled with peace.
I feel you, Im dealing with the same thing (was diagnosed at the age of 8) it will all be ok though we still have the gift of life : ]
drodgta2 1 year ago
Hello,
my name is Vincente and I'm from Chile.
Here I know a very hard case that is being treat succesfully with BIOMAGNETISM. Learn About it, it is a very friendly natural medicin with magnets.
You can also try Kambó if you're unoff open minded.
Beleve me I don't even know you and I'm telling you this for free.
Good Bye
viguidi 2 years ago
You may already know this but many of the immune/ inflammatory things have to do with a build up of environmental chemicals in our bodies, the same thing that causes global warming is poisoning us. Detox stuff has been very helpful for me, and cleaning up my personal space, elimination of interior toxins, adding air filters etc... Just a thought. There are many very effective detox methods out there many of which I use daily, let me know if you ever want to talk. Ann
tooofiredup 3 years ago
I saw your post, I'm so sorry. It's even harder for those of us who are butch given the whole mythology around physical strength. I don't know what to say about the identity thing, it's hard. I'm in construction and it kills me that I have to have help with things that used to be no big deal, it's easy to forget who I am.
tooofiredup 3 years ago
My daughter has JDM. She is now in remission. Watching your video gave a little insight as to how she might feel. She doesn't talk much about JM. While her disease was active she wore a medical alert bracelet. One day she took it off and I have never found it.Now I know it made her feel like she was branded, different from other little girls her age. My thoughts and prayers are with you.We used to live in Upstate NY and moved to WA State.We lived here five months when she fist had symptoms.
csmidrowley 3 years ago
Stacey, im going through yr videos, so im figureing yr now almost 41?, like to know where yr at now & if things are looking up?, you know a very famous Lady called amelia earhart cioned a phrase, "the most constant thing in life is change", therefore nothing stays the same forever, this quote is an absolute, id really care to know where you're at today!, i understand Disability, its my qualification in life, yr body may not do what it used to but yr minds sharp as a tack, "Write A Book", : ). BT
ButterflyTigeress 3 years ago
I just watched several of your videos and had to watch this one! I have Multiple Schlerosis and can't work and am now fighting with a lawyer to get SS at age 37! It sucks so bad, especially when bills and chores around the house stack up!
I have "alot" of hobbies I do to keep my mind busy. I guess I just wanted to let you know, I cried with you because it was like a page out of my own life!
sheelea05 3 years ago
I Have Dermata too I have Had it since i was 5 and now i am 25!!! Keep Fighting girl you aren't alone :)
Jocelynthebrownfox 4 years ago
I empathize with you Stacy, it's not easy knowing you have a disease.... but just remember you are not the disease, it is something you have. I'm not on disability with my disease, but I found out I had it when I was 29 and it has disrupted and re-wrote every part of my life. It hasn't been nor is it now... easy. I just take it one day at a time.
Keep your chin up, we are here with you, to listen, to help any way we can.
chloekttn1975 4 years ago
I'm really sorry --- you are in my prayers sister.
ItalianLoco 4 years ago
i have an idea. i'd love to meet you at 7.7.07
dkrikori 4 years ago
Disease really has a way of shaking one's Etch a Sketch. Maybe you don't have to fill the picture of your future back in all at once. Maybe you can do it one week at a time. You keep speaking in terms of 'half my life',...that is overwhelming and possibly inaccurate and certainly a huge wallop on the psyche. None of us are even guaranteed another half, so please, find some way to enjoy today. Please. I'm so sorry you are this down.
SadieDammit 4 years ago
sorry you're going through that. i can't imagine what you're going through, but i hope you find something positive out of this. :-) best of luck.
Doodsjager 4 years ago
you are so adorable!
thesmiths1013 4 years ago
you go girl!!! meds can help. do what you have to..thinking about you..((((more huggies))))
Amybtru 4 years ago
i think you might be right :)
aNewYorkMinute 4 years ago
You Rock... I LOVE NY!!! Hope Everything works out ok for ya.
PrincessMiller 4 years ago
thank you so much :)
aNewYorkMinute 4 years ago
Sweetie, I can relate to everything you said - it's hard to find people who "get it". One day at a time... one painful step at a time. You aren't alone. Joanie (a new subscriber)
Joan3424 4 years ago
you have tokeep the faith at all times..it can be tough though :) thanks for the sub :)
aNewYorkMinute 4 years ago
I can somewhat relate. I was on workman's comp for almost 7 months and it drove me crazy. Fortunately I was able to return to work. Hopefully you will find your way. Life is difficult enough but with no direction it can be almost impossible. Hears to hoping you find your way.
Ghostwriter6967 4 years ago
it so can suck sometimes...i am doing better now though...i'll make an update soon on this..
aNewYorkMinute 4 years ago
Hope you are feeling well today...many hugs to you from Michigan((huggies))
Amybtru 4 years ago
i love huggies :)
aNewYorkMinute 4 years ago
I really feel for Stace. I can't imagine what that is like, but I want to say that I think you are an active part of THIS community, the youtube community, and I know I look forward to your posts. So keep up the good work on here, and I really hope things get better for you.
oceanbreathessalty 4 years ago
thanks sweetie :0
aNewYorkMinute 4 years ago
I adore you, keep it up!
oceanbreathessalty 4 years ago
I confess I wasn't able to get sound on this, but based on Steph's and Henrik's video replies, I think I got part of the message here.
Just wanted to say that I enjoy stopping by your channel and watching your videos when I can. You bring something unique and VALUABLE to the table here. So please don't stop doing that.
I wish you all the best.
-Curt
curt344 4 years ago
Was it me or was your sound (mic) very low. I had to pump up the sound to hear you. Good vlog. Thanks for sharing your life here.
JamJells 4 years ago
it was me...
aNewYorkMinute 4 years ago
my comments go from bottom up.
PLEASE SMILE...AND THANK WHOEVER YOU THANK AND FIGHT LIKE YOU HAVE NEVER FOUGHT BEFORE.
Amybtru 4 years ago
YOu need to list the things that you have in your life that are blessings. YOu home,your comuter,your looks,your furniture then list your Cons and see the difference in the size of the two lists and go from there. PLEASE.
Amybtru 4 years ago
You gotta find it Stacy or you will lose your soul. You ARE only 39,yes you are disabled,yes you struggle but thank god you aren't in a gutter somewhere addicted to drugs or alcohal or homeless or starving or dying of AIDS or cancer or in Sudan or Darfur or Ethiopia.
Amybtru 4 years ago
You CAN be productive in so many other ways. Volunteer to visit the elderly,you being here on youtube i'm sure is helping people too. But you have to find the drive inside of you for something. Fishtanks? They can be so relaxing and fun to decorate and maintain a little at a time.
Amybtru 4 years ago
You have to find in yourself everyday when you look in the mirror that you are a wonderful part of this earth you have to feel it in yourself in order to live it. If you don't feel that in yourself you need to figure out why.
Amybtru 4 years ago
I know how debilitating things are too. But in order to lift yourself you need to make sure you are doing something at home. Painting,cooking,baking,crafts,gardening,flowers,canning,sewing,knitting etc.
Amybtru 4 years ago
thanks for you note...i am looking into options...my muscles hurt sometimes making everthing tough...but i am on meds again and they have kicked me...i am so happy :)
aNewYorkMinute 4 years ago
Stacy, thanks for sharing your story. I hadn't checked out your channel until I saw stephstance's response to your vid. Well, my thoughts are that it'll probably be best to not allow a job to define your life since life has changed. Volunteer work when you are able can always be a source of support. Just a thought. Write back if you'd like.
BuzzieinNJ 4 years ago
volunteering ---theywant a schedule.. :( i can't give that right now...
aNewYorkMinute 4 years ago
I got much the same when I was diagnosed with ME. I used to work lots of hours and I still found time for my water ski-ing etc but suddenly it stopped!
Guilt is a terrible thing but we do have it because we are not paying our taxes - Depression is kept in check with Prozac.
I wish you well.
*Hugs*
Mark
CarlisleCockney 4 years ago
mark thank you for sharing...huds and more hugs to you..
stac
aNewYorkMinute 4 years ago
Stacy, I cant tell you how much I relate to ya. I have no clue if I will ever be able to work again with my knee injuries. Its been since Aug '05 for me. I sooo get your struggle. Its a hard thing to get used to saying that you do not have a job, I know. It will be okay though, somehow, someway for the both of us :) We will find other great things to do. Look how many people you are helping and inspiring on here. :) -patty
zooropa1967 4 years ago
let's just keep moving forward...
aNewYorkMinute 4 years ago
i don't "know" you, and i don't know why but i honestly do believe in you - i just truly hope that you believe in yourself. once you leave your depression - you'll be able to see the beauty of your life again. my advice: start with taking even more baths. and when your feeling down, don't forget to find a way to smile. xoxo
dkrikori 4 years ago
toknow me is to love me ;)
aNewYorkMinute 4 years ago
LOL!
when i think of a witty rebuttal to that - i'm so coming back here and posting it :-P
dkrikori 4 years ago
Of course I don't know you well but just by seeing you for the past month or so I see your gifts of intelligence, kindness and insightfullness. Very valuable traits for many lines of work. Something will come your way. Because of his disability a family member couldn't hold down a job for more than a few weeks. Now, with a newer medication he's been at the same job for 3 years. Hang in there, you never know what's around the bend.
loonylisa 4 years ago
thanks for the kind words...
aNewYorkMinute 4 years ago
You need to meet my mama.
oneiblind30 4 years ago
i have a pretty good mamma myself :)
aNewYorkMinute 4 years ago
you remind me of my lesbian sister, she and I are the gay kids out of 8......luckily we've always had open /loving parents...your condition almost sounds like LUPUS ...keep a good additude,try anyways. Rex
rextrek 4 years ago
thanks rex...
aNewYorkMinute 4 years ago
I am also sorry for your struggle. No one knows what it's like unless they too are going through it.
But from the comments it looks like many empathize. Some may think people take YouTube way too serious, but it can be a great support system. I wish you good luck. I'm sure you'll find your way.
bjshowz 4 years ago
i am suprise myself what a good support system it can be....
aNewYorkMinute 4 years ago
WOW! you have NO idea how much I feel you girl! I am also on disability. I want to be your friend. I've been a quiet subscriber of yours for some time now...But I don't want to be quiet anymore. I adore you.
ItalianStallionette 4 years ago
i haven't fogotten you... i just need a little time to get back to you... you are a sweetie...ty
aNewYorkMinute 4 years ago
Wow, probably the most heart-felt thing I've watched on YouTube. I don't have any magic words, Stacey, but I can say that you have an incredibly sweet and positive disposition. Many people would let their disability consume them, but that won't happen to you given what an uplifting spirit you have. There will be rough days, but you'll come through this. Remember--I have the magic 8 ball. ;-)
RoulinBrooks 4 years ago
thanks ... i am me...it come through --- i need a magic eithball unless i ca just use yours :)
aNewYorkMinute 4 years ago
i found your video through stephstance. i dont have anything to say that will help you, but i just wanted to let you know that this video really touched me. i'm so sorry to hear about your struggle.
imajeanyus 4 years ago
thanks...steph is my really good pal..i am lucky she found me :)
aNewYorkMinute 4 years ago
We have a lot in common. We have a different diagnosis, but the same story. Chin up. Life is UNPREDICTABLE. As long as there is breath, there is hope. :D
lilvoyce 4 years ago
yep..things are always changing.. :) i hope you are doing ok-good :)
aNewYorkMinute 4 years ago
Gosh Stacy, what a difficult blow. My mother's best friend has the same condition. Her life did change dramatically, but she was able to rebuild and is now coping quite well. Keep the faith. You'll find your way, and you have good friends here who care.
Lesley
LeSaMilano 4 years ago
it's crazy when that happens...it's like someome say---nope wrong way
aNewYorkMinute 4 years ago
sweetie what part of maryland did u live in i live in Mont Co.
imclosetfree 4 years ago
bethesda/rockville pike
aNewYorkMinute 4 years ago
omg i live in rockville
imclosetfree 4 years ago
Stacy, you are amazing. I can't even imagine what you're going through but all I can say is stay strong. You will find your calling, it just takes time. When it seems impossible you just need to carry your faith on. Faith is the on thing we have on this earth. If you believe in yourself and just carry on, It, what ever it may be, will come to you.
-Lindsay
fadeddream23 4 years ago
thank lindsay :) i just have to give it time...
aNewYorkMinute 4 years ago
do you think we are really a like? how? i love steph..so it's ok.. i am just wondering...
aNewYorkMinute 4 years ago
ok..i'm stac but you can call me steph it seems to happen a lot lately :) thanks for the kind words..
aNewYorkMinute 4 years ago
I'm sending you a PM... Love ya, Sandy xo
dontmakemesing 4 years ago
sandy, thank you so much...i am going to answer you via pri vid this weekend...
aNewYorkMinute 4 years ago
Thanks, Stacy. You are incredible, and don't lose sight of that. Peace, Honey... S xo
dontmakemesing 4 years ago
Gosh, that took guts. I also sucks. I can't relate, but I can empathize but it sounds like you need to keep the faith yourself. From what I have seen and heard here, you seem like avery wise and compassionate person who has a lot to give (maybe more than you realize). I, and I am sure many others appreciate your perspective on things. Hang in there and I am sure you will discover your second life. Meantime may your days be filled with peace.
timtim66 4 years ago
thank you...i need to find he second life or maybe it will come to me..maybe i have to create it...
aNewYorkMinute 4 years ago
six minutes of my life, down the drain
theredpuppy7 4 years ago
and 35 sec wasted reading stupid comments like this. You could have just left with out saying a word.
StephStance 4 years ago