Scleroderma Info and Support for our Monkeys

[Bearlyhere]

Information and Support for our Monkey family.

[Lucinda]

Thanks bearly.  It will be good to see if anyone else here has this same illness I have.  Its pretty rare where I live, noone knows what it is if I tell them.  I have had it since I was 22 years old.  Im 43 now, and that is a long time to survive it.  Its basically where your body slowly turns to stone.  thats how it was explained to me.  Your skin gets really hard and tight, its almost as like your skin is too tight for your body.  It narrows your blood vessells, which turn your extremities blue from lack of bloodflow.  I have lost the feeling in one finger on my left hand, but I have not had any amputations, and for that im extremely pleased.  I have a narrow oesophegus, and I find it hard to swallow food.  i once had my oesophegus stretched cos i kept choking on food.  I got to take meds for acid reflux tho.  My mouth got real tight and small, cos the skin on my face was pulling real tight.  i had to get all my teeth taken out cos they became too big to fit inside my mouth.  I wear dentures, and they are so small, they look hilarious    I have been in hospital lots of times with kidney problems.  I get tired a lot, but i also get very insomniated (not a word I know  )   But, really, I am very lucky.  Not many people can live as long as I have with it.  I had one real good mate, we met in hospital.  She died 2 years ago from this, and she was 38.  i cried and cried and really miss her.  Anyway, this is not a pity thread, cos I dont want that.  Im really doing well, and even work part time as a motel cleaner.  I look like hell, but when i put makeup on and do my hair nice, i dont scrub up too badly    It is an auto immune disease, and that means my immune system is going on overdrive, attacking my good cells.  I have a very high ANA count, which is 1 in 2560.  I think anything over 1 in 20 is not normal.  Im not real sure, just know mine is really high.  Anyway, thats what it is, and if anyone would like to chat or has the same condition, id be interested to talk to you in here.  My husband has lupus, but he had it when i met and married him, thats how we met, autoimmune support group I joined on the net years ago.  So, if I can find one positive from having this, its Id never have met my soulmate and dragged him to australia to marry me 

[Bearlyhere]

Thanks bearly.  It will be good to see if anyone else here has this same illness I have.  Its pretty rare where I live, noone knows what it is if I tell them.  I have had it since I was 22 years old.  Im 43 now, and that is a long time to survive it.  Its basically where your body slowly turns to stone.  thats how it was explained to me.  Your skin gets really hard and tight, its almost as like your skin is too tight for your body.  It narrows your blood vessells, which turn your extremities blue from lack of bloodflow.  I have lost the feeling in one finger on my left hand, but I have not had any amputations, and for that im extremely pleased.  I have a narrow oesophegus, and I find it hard to swallow food.  i once had my oesophegus stretched cos i kept choking on food.  I got to take meds for acid reflux tho.  My mouth got real tight and small, cos the skin on my face was pulling real tight.  i had to get all my teeth taken out cos they became too big to fit inside my mouth.  I wear dentures, and they are so small, they look hilarious    I have been in hospital lots of times with kidney problems.  I get tired a lot, but i also get very insomniated (not a word I know  )   But, really, I am very lucky.  Not many people can live as long as I have with it.  I had one real good mate, we met in hospital.  She died 2 years ago from this, and she was 38.  i cried and cried and really miss her.  http://scaredmonkeys.net/Themes/default/images/right_column_textMISSINGEXP.gifAnyway, this is not a pity thread, cos I dont want that.  Im really doing well, and even work part time as a motel cleaner.  I look like hell, but when i put makeup on and do my hair nice, i dont scrub up too badly    It is an auto immune disease, and that means my immune system is going on overdrive, attacking my good cells.  I have a very high ANA count, which is 1 in 2560.  I think anything over 1 in 20 is not normal.  Im not real sure, just know mine is really high.  Anyway, thats what it is, and if anyone would like to chat or has the same condition, id be interested to talk to you in here.  My husband has lupus, but he had it when i met and married him, thats how we met, autoimmune support group I joined on the net years ago.  So, if I can find one positive from having this, its Id never have met my soulmate and dragged him to australia to marry me 

Lucinda,

You are amazing and that husband of yours is one lucky guy.  I hope he knows it.

 

[Lucinda]

thanks bear, and yeah he knows it, i tell him every day how lucky he is to have me    j/k.  Anyways, thanks for making me the thread.  im gonna hit the hay cos ots midnight again here and Im still up reading away on the caylee board, but Im gonna have to catch up tomorrow I think.  goodnight bearly you are a nice person too, made me feel so welcome in here, all you guys are awesome. 

[Mary Ann]

  Hey Lucinda, check your e-mail...........I did not know that we have our own thread!  That is way cool.  Now I know how this disease affect you, I can send you the appropriate literature.

[Mary Ann]

Scleroderma is a chronic, often progressive autoimmune disease- like rheumatoid arthritis, lupus, and multiple sclerosis-in which the body's immune system attacks its own tissue.
The disease, which literally means "hard skin" can cause thickening and tightening of the skin, as well as serious damage to internal organs, including the lungs, heart, kidneys, esophagus and gastrointestinal tract. Scleroderma occurs three to four times more often in women than men.
Sympoms of Scleroderma vary from mild to severe. For some, it is a life-threatening disease.  For most people with Scleroderma, the disease has a serious impact on daily life. And, although medications can sometimes help, there is no cure yet.
For more information, visit www.scleroderma.org

[Lucinda]

Hi Mary Anne, I will email you in a sec.  Im just so happy we can post in here about it.  it is something I dont discuss much around home.  You know, the being strong and all thing.  One thing I forgot is that in scleroderma, the body produces too much collagen.  So, in my case, the body secretes the overload thru my skin, and I have these lumps of hard calcium deposits on the tips of my fingers.  one good thing tho, I never will need botox    Im 43, and dont have one wrinkle or crows feet in my face at all.  So, suck that up Brooke from Bold and Beautiful 

[Mary Ann]

I will await your e-mail. Yesterday I sent you a package of information. Not sure how long it will take to get all the way down under. But it is on the way!!!
I got a call from another Monkey friend at work with a request to send information. Can't even tell you how excited I get to spread awareness about Scleroderma!
When I went to the National Conference in California, I met Chris Harrison, the host of the Bachellor. His MIL had the disease and he is one of our spokespeople. He and his wife make a beautiful couple.

[Lucinda]

you are such an angel Mary ann, I cant tell you how greatful i am for your help.  i cant wait to get the info, thanks so much for posting it to me, I know it costs more to send overseas.  Any way i can help spread the word, or help, let me know.  I actually saw my gp today, and he said i would feel more energy by taking a new drug called Pristiq.  I got a months free samples, but i dunno if to take them or not, been reading up online, they sound awful to me.  They are a class of anti depressants, which i dont take, but he says they will give me a lift.  Anyway, I dont mind posting that info here, cos I rather say it all out openly, as someone else might be going thru the same thing. 

[Mary Ann]

Lucinda, don't worry about the postage, it is my Christmas gift to you! Just got back inside after shoveling snow. My Maltese made friends with a skunk this morning so my poor house stinks to high heaven!!! Had the day off, but it was not a lot of fun with the skunky smelly dog. I washed him a few times and he is not so bad now, I love him to pieces even if he is stinky. Lucky boy!
I was lucky enough to watch the skunk go under my shed, he is lucky that I don't have any dynamite

[Lucinda]

thank you Mary Ann, thats so sweet of you.  OMG snow and skunks, cant imagine christmas being cold and snowing.  We are going to have a scorcher this christmas.  I have never seen a skunk in my life, that cartoon one (was it pepe?) I loved him 
LOL @ your dog.  I have a a foxy x jack russell, she is my baby and protecter, she really would give her life to protect me, even if its from a little mouse    I have hubby sick, he picked up a tummy wog, I am bleaching the toilet etc, cos no way do i wanna catch it so close to Christmas.  Think i will sleep in the spare room too 
I have been looking after him tho, feeding him flat 7 up and dry toast. 
Giving him wet face cloths. 

[Mary Ann]

Lucinda, sure hope your DH is feeling better and did not share his germs with you. Skunks in real life are not cute, I only saw kangaroos in books and thought they were cute and pretty. Saw one in a zoo and it was quite ugly................
I was very lucky with the skunk, the other two dogs (another Maltese and a Golden Retriever) were not sprayed. The house still smells, so I lit candles and incence. We got a foot of snow yesterday and expect another foot tomorrow. Heck, it isn't even technically winter till tomorrow. Sure hope I can get to work on Monday, they called it off yesterday due to the storm.

[IBE]

HI,

The lady who owns, with her husband, the local Italian market has this. She has some good days and some not so good days. She has dialysis (sp) at least 2 times a week and then works at the market. Sometimes she needs to rest. She has been the Mayor's wife and Councilman's wife (same husband) She is about 66 and very pretty, still!

Wish you lots of healthier days

Love,

IBE

[Lucinda]

Lucinda, sure hope your DH is feeling better and did not share his germs with you. Skunks in real life are not cute, I only saw kangaroos in books and thought they were cute and pretty. Saw one in a zoo and it was quite ugly................
I was very lucky with the skunk, the other two dogs (another Maltese and a Golden Retriever) were not sprayed. The house still smells, so I lit candles and incence. We got a foot of snow yesterday and expect another foot tomorrow. Heck, it isn't even technically winter till tomorrow. Sure hope I can get to work on Monday, they called it off yesterday due to the storm.

Hi Mary Ann, hope you got the smell out of your house.  I ended up catching the tummy wog,     Whaddya mean kangaroos arent cute?  Havent ya heard of skippy? 
Hope you got to work OK.  Our forecast for christmas day is 31 celcius (about 88f). 

[Lucinda]

HI,

The lady who owns, with her husband, the local Italian market has this. She has some good days and some not so good days. She has dialysis (sp) at least 2 times a week and then works at the market. Sometimes she needs to rest. She has been the Mayor's wife and Councilman's wife (same husband) She is about 66 and very pretty, still!

Wish you lots of healthier days

Love,

IBE

Hi IBE,
thanks for posting.  I will send some healing prayers to the lady.  She sounds like she is a very strong woman, to still be working while having dialysis, my hat goes off to her.

[Lucinda]

Mary ann, I received your parcel today.  Thank you from the bottom of my heart, you are a special caring lady, and to spend so much on overseas postage and wrap the cookbook up in christmas paper and ribbons, you are just awesome to do that.  The cookbook is really good, I love it.  The hints, recipes, even theres some recipes from australians.  the literature you sent me with it, well its in an email I am about to send you.  Its Michelle, just want to say, her story has made me hate this disease even more.  I will email you soon, just got back from wattos funeral and wake.  I had to be the sober driver for 20 people    Back and forth, back and forth dropping em all home.  Im having a beer now, I have 30 mins till midnight, whoop de whoop.  Happy new year, and thank you so much for what you sent me.  Love you