I have Scleroderma but it really differs from person to person. I get some swelling that comes and goes and raynauds, I am tired at times but still very active and hyper quite often. I take medication and that helps. It is scary to go online and look it up. 2 years ago I did just that and had a major panic attack. So far I am the same and have no internal organ or major skin tightening. Not yet. Don't panic it is not a death sentence for everyone.Focus on what matters like your loved ones and friends. I work full time when my fingers and feet swell I take prednisone and go easier at work.I think my outlook is much better than it was initially.
I’m 37 and I was diagnosed with limited scleroderma 10years ago and now I’m diagnosed with PAH due to scleroderma, its hard to co op , its hard to explain it its hard to share the emotional roller coaster throu it all. I live in the UAE and even though there is a good amount of people with autoimmune diseases , there is no support group and COVID restrictions made it hard for me to take initiative of gathering people and share the load. Thank you for sharing this helps a bit
EXCELLENT, INFORMATIVE, ASSURING, COMFORTING presentation that was delivered SO PERFECTLY! THANK YOU VERY MUCH for ALL of your hard work, dedication, and genuine care that you CHOOSE to "gift" to others and for making a positive difference in others' lives... and the RIPPLE EFFECT that your efforts create... ASTOUNDING! 🙏😊
My mantra is 'it's not all about me.' Other people have bad moods, bad days, and off communication. I assume that they're struggling with their internal hell - just like I am - and that whatever they miscommunicated had nothing to do with me at all. And what if they just can't come across right? Maybe they're sick, too. Because of my limitations, I don't always come across the way I want to. Why should I assume that others don't have the same problem?
going thru testing now... I feel sure I have it. my skin on top of feet & legs feels like 100 year old leather with not being able to point feet downward at all w/out painful. COPD I quit smoking & use inhalers but in last year can't walk a block' can't lift groceries in house. when sweep or mop kitchen im winded heart pounding & sweating like a work out. I cant swim with out being near side of pool. I used to country dance all night- now I cant make it past 1 song. cannot fast polka or jitterbug at all. parts of my body get red patches & feel hard beneath. My mouth is dry & teeth falling out. I can't stand more than an hour or legs get numb, burning & swelling- stage 3 lymphodema woody lymphodema extremely painful even wearing support stockings daily. sudden weight loss. trouble swallowing. patches where hair thinning or falling out. used to have beautiful skin now it seems like it dried up and sank fell down. balance is awful. walk with cane or walker since falling and getting 2 serious concussions in one year. Kids & friends see dramatic changes in me. I'm an outgoing person love to laugh go places very social- now I am afraid to commit to dates or make plans. I'm divorced 2years ago & baby is going to college next year. THIS was supposed to be my time to live my life to check off my bucket list- to go & see & experience this world & live life new adventures! THIS is NOT the new adventure I was looking forward to. I pray I don't have it. but something is very wrong. I hope that meds can control it and I have time to live some of those dreams I've had. God has a plan I have faith and I know He will see me thru all things good and bad. I sure hope for the REALLY good fun loving part of life. I want to be excited about living. Not living in fear of what's going to give out next! I am still hoping that the greatest love of my lifetime is yet to come. Gof Bless all the courageous people dealing with chronic illness. it's a full time challenge to keep pushing on gratefully. I am grateful for all my blessings. ...sometimes I am afraid thou.
+lisa painter hi.you could had a cancer,much worst, that the things there are more odd if that helps,i say it to myself.i suffered for many months for to try to convise the doctors that is not my compulsive disorder and you must be listening to my symptoms for real,because i ve searched for months before i draw to my conclusion that im not a doctor but i know things ,that it must be sceroderma,systemic or not i dont know,but somewhere there(and because his first mistaken ,his egoism didnt let him understand me and how serious symptroms i live for years now,i know my self) .i just know i have it,when the right knowledge came to me and beyond the mistakes ive made i founded the right one too.so ,think that you are alone in the world,not enterely,but alone,you dont have the money because the little you have you must give it for to take another medicine that i already need from the hospital that is far away of my home,so i need money to go there,because if i dont get it,my anxcious will explode to such highs that all the symptoms of scleroderma will be start to grow.this medicine causes addiction,but it helped me to stop from 2003 the use of something more distractive than this i take now ,well from 2003.so this is killing me,but it keeps my symptoms in low level also,like there sleeping,so the graduation of scleroderma is slow with this.if i stop this my endorphines and the lack of them in my brain,will defenetly kill me in some months or year.but mabe because im in the start of the symptoms of scleroderma,mabe if i stop it my health will be beter and my body will react well,because we are talking about a drug like a heavy painkiller,with synthetic opium.so both scenarios are egual for me .if i stop taking it im propably dead,if i continue taking it i will also be dead.but i have a relief in my pain and a not so fast graduation of the disease.it makes the arythmia smaller ,my pain in hands- legs,my pain in my head,it helps to sleep,but i waking up at 4 in the morning with no need for sleep.so i waking up and im not fighting it,i go for a coffee and im starting to play with the pc and pass my time and you know you can be creative even in those situations,im painting and doing my things.i forgot to tell you that my legs was like a balloon for a while,also my symptoms was getting worst,my heart arythmia,my eyes,my sexual organs,burning heart symptom,insomnia,not eating much.and then i desided to smoke weed again and my legs came to normal,my burning heart symptom is not there as much as other symptoms.it didnt cure,but sure i was a mess that cannabis helped me.well im smoking only one joind the day at night at my bed only,watching a movie afterwards and this joint keeps me with low symptoms in my day.in my small town i live, i have another rasistic problem that drives me crazy.wich the truth is that i stopped heroine and other drugs from 2003 with my will and with the help of this substitute,but the people around me seeing my scleroderma all of these years that im clean and finally im off ,all of these years and some very few know the truth,but the most of them believe i still using, from my skinny look,not very very skinny,but skinny,with my hair problems,my little brown-white skin and not healthy look,FOR THEM,so i use!!!i cant find a job easy,i dont have the money to run for my disease easely and because i dont want anyone to fell pitty for me,im playing it like im fine to them(because nobody really listens),so as i live i will be a pain in there ass with my truth..hahah.i know im going to die and im fine with that,but not with the pain.i dont care if i die,i dont want pain anymore.pain from our parents,pain from addiction,pain from figting addiction,pain after the addiction,social pain,ocd pain,pain from my love for them and pain from there love to me, because at the end its nobodies fault,not even to those they distracted me at first place,because they didnt reallise they did and there mothers and fathers also didnt reallise there faults also to them.thats life and humanity.we are more humans when we cry,we are more humans the more you experiencing.i want to live,but i must learn to handle the truth also,my truth.i m saying all those to you to understand that im far worsten and complex than you.but i lived,danced,fucked,loved much,my creativity and my ultimate creation ,was my distraction so il fight it,but i cant do much now.you can live,try things with food,herbs,medication and meditation and somewhere to explode your fandasy,find your ways .buy and good luck and remember you have one problem,i have many to many levels,but i dont give up,i fall down,but i saw my self getting burned a thousand timesand i lived again a thousand times...
Одне бла бла а лікування 0 сиджу і чекаю смерті так як ніхто не вміє і не хоче це лікувати всім байдуже адже здорові не переживають за хворих? Ну чому планета аюверда не надрукує пакет лікування для кожного хворого???не знаєте? А хто знає? Всім начхати на нас хворих
This sure helps me understand what I am going through. Clearly some of my doctors would benefit from watching it. Bless all of you who are suffering.
I have Scleroderma but it really differs from person to person. I get some swelling that comes and goes and raynauds, I am tired at times but still very active and hyper quite often. I take medication and that helps. It is scary to go online and look it up. 2 years ago I did just that and had a major panic attack. So far I am the same and have no internal organ or major skin tightening. Not yet. Don't panic it is not a death sentence for everyone.Focus on what matters like your loved ones and friends. I work full time when my fingers and feet swell I take prednisone and go easier at work.I think my outlook is much better than it was initially.
I’m 37 and I was diagnosed with limited scleroderma 10years ago and now I’m diagnosed with PAH due to scleroderma, its hard to co op , its hard to explain it its hard to share the emotional roller coaster throu it all.
I live in the UAE and even though there is a good amount of people with autoimmune diseases , there is no support group and COVID restrictions made it hard for me to take initiative of gathering people and share the load.
Thank you for sharing this helps a bit
EXCELLENT, INFORMATIVE, ASSURING, COMFORTING presentation that was delivered SO PERFECTLY! THANK YOU VERY MUCH for ALL of your hard work, dedication, and genuine care that you CHOOSE to "gift" to others and for making a positive difference in others' lives... and the RIPPLE EFFECT that your efforts create... ASTOUNDING! 🙏😊
Great video, thanks! It helps me understand my sister better.
Very well delivered!
My mantra is 'it's not all about me.'
Other people have bad moods, bad days, and off communication. I assume that they're struggling with their internal hell - just like I am - and that whatever they miscommunicated had nothing to do with me at all.
And what if they just can't come across right? Maybe they're sick, too.
Because of my limitations, I don't always come across the way I want to. Why should I assume that others don't have the same problem?
I am suffering from scleroderma..
going thru testing now... I feel sure I have it. my skin on top of feet & legs feels like 100 year old leather with not being able to point feet downward at all w/out painful. COPD I quit smoking & use inhalers but in last year can't walk a block' can't lift groceries in house. when sweep or mop kitchen im winded heart pounding & sweating like a work out. I cant swim with out being near side of pool. I used to country dance all night- now I cant make it past 1 song. cannot fast polka or jitterbug at all.
parts of my body get red patches & feel hard beneath. My mouth is dry & teeth falling out.
I can't stand more than an hour or legs get numb, burning & swelling- stage 3 lymphodema woody lymphodema extremely painful even wearing support stockings daily. sudden weight loss. trouble swallowing. patches where hair thinning or falling out. used to have beautiful skin now it seems like it dried up and sank fell down. balance is awful. walk with cane or walker since falling and getting 2 serious concussions in one year. Kids & friends see dramatic changes in me. I'm an outgoing person love to laugh go places very social- now I am afraid to commit to dates or make plans. I'm divorced 2years ago & baby is going to college next year. THIS was supposed to be my time to live my life to check off my bucket list- to go & see & experience this world & live life new adventures!
THIS is NOT the new adventure I was looking forward to.
I pray I don't have it. but something is very wrong. I hope that meds can control it and I have time to live some of those dreams I've had. God has a plan I have faith and I know He will see me thru all things good and bad. I sure hope for the REALLY good fun loving part of life. I want to be excited about living. Not living in fear of what's going to give out next! I am still hoping that the greatest love of my lifetime is yet to come. Gof Bless all the courageous people dealing with chronic illness. it's a full time challenge to keep pushing on gratefully. I am grateful for all my blessings. ...sometimes I am afraid thou.
+lisa painter hi.you could had a cancer,much worst, that the things there are more odd if that helps,i say it to myself.i suffered for many months for to try to convise the doctors that is not my compulsive disorder and you must be listening to my symptoms for real,because i ve searched for months before i draw to my conclusion that im not a doctor but i know things ,that it must be sceroderma,systemic or not i dont know,but somewhere there(and because his first mistaken ,his egoism didnt let him understand me and how serious symptroms i live for years now,i know my self) .i just know i have it,when the right knowledge came to me and beyond the mistakes ive made i founded the right one too.so ,think that you are alone in the world,not enterely,but alone,you dont have the money because the little you have you must give it for to take another medicine that i already need from the hospital that is far away of my home,so i need money to go there,because if i dont get it,my anxcious will explode to such highs that all the symptoms of scleroderma will be start to grow.this medicine causes addiction,but it helped me to stop from 2003 the use of something more distractive than this i take now ,well from 2003.so this is killing me,but it keeps my symptoms in low level also,like there sleeping,so the graduation of scleroderma is slow with this.if i stop this my endorphines and the lack of them in my brain,will defenetly kill me in some months or year.but mabe because im in the start of the symptoms of scleroderma,mabe if i stop it my health will be beter and my body will react well,because we are talking about a drug like a heavy painkiller,with synthetic opium.so both scenarios are egual for me .if i stop taking it im propably dead,if i continue taking it i will also be dead.but i have a relief in my pain and a not so fast graduation of the disease.it makes the arythmia smaller ,my pain in hands- legs,my pain in my head,it helps to sleep,but i waking up at 4 in the morning with no need for sleep.so i waking up and im not fighting it,i go for a coffee and im starting to play with the pc and pass my time and you know you can be creative even in those situations,im painting and doing my things.i forgot to tell you that my legs was like a balloon for a while,also my symptoms was getting worst,my heart arythmia,my eyes,my sexual organs,burning heart symptom,insomnia,not eating much.and then i desided to smoke weed again and my legs came to normal,my burning heart symptom is not there as much as other symptoms.it didnt cure,but sure i was a mess that cannabis helped me.well im smoking only one joind the day at night at my bed only,watching a movie afterwards and this joint keeps me with low symptoms in my day.in my small town i live, i have another rasistic problem that drives me crazy.wich the truth is that i stopped heroine and other drugs from 2003 with my will and with the help of this substitute,but the people around me seeing my scleroderma all of these years that im clean and finally im off ,all of these years and some very few know the truth,but the most of them believe i still using, from my skinny look,not very very skinny,but skinny,with my hair problems,my little brown-white skin and not healthy look,FOR THEM,so i use!!!i cant find a job easy,i dont have the money to run for my disease easely and because i dont want anyone to fell pitty for me,im playing it like im fine to them(because nobody really listens),so as i live i will be a pain in there ass with my truth..hahah.i know im going to die and im fine with that,but not with the pain.i dont care if i die,i dont want pain anymore.pain from our parents,pain from addiction,pain from figting addiction,pain after the addiction,social pain,ocd pain,pain from my love for them and pain from there love to me, because at the end its nobodies fault,not even to those they distracted me at first place,because they didnt reallise they did and there mothers and fathers also didnt reallise there faults also to them.thats life and humanity.we are more humans when we cry,we are more humans the more you experiencing.i want to live,but i must learn to handle the truth also,my truth.i m saying all those to you to understand that im far worsten and complex than you.but i lived,danced,fucked,loved much,my creativity and my ultimate creation ,was my distraction so il fight it,but i cant do much now.you can live,try things with food,herbs,medication and meditation and somewhere to explode your fandasy,find your ways .buy and good luck and remember you have one problem,i have many to many levels,but i dont give up,i fall down,but i saw my self getting burned a thousand timesand i lived again a thousand times...
I have scletoderma & Sjorgren's syndrome.Lost an eye & skin is very blotchy.
i also have scleroderma and raynuds
I my name is marie i have escleroderma that effect most part in my body my joint my skin my vocal cord my teeth.
Mary Rosalva ,me to
Me three! (we are not alone. I hope you both are doing well.)
Mary Rosalva me also have systemic scleroderma
Одне бла бла а лікування 0 сиджу і чекаю смерті так як ніхто не вміє і не хоче це лікувати всім байдуже адже здорові не переживають за хворих? Ну чому планета аюверда не надрукує пакет лікування для кожного хворого???не знаєте? А хто знає? Всім начхати на нас хворих