|
Post by steve201 on May 27, 2009 20:47:39 GMT -5
amen shirley!!..I have stated many times...never give up..never surrender....it can be beaten....but it's going to take every bit of your strength..
Steve
|
|
|
Post by shirley on May 28, 2009 8:39:11 GMT -5
Your so right Steve...it will take the strength that you don't even feel you have left....THINK it in your mind when your body feels weak....Mind over matter...they say...the body responds to the mind....Some people who get this disease will progress very fast ( that is the kind that the medical books talk about ) and if you have that kind...you better get yourself to a Dr. that will try AP or something else....do not mess around with it...fight for your life. I didn't have a choice when I was diagnosed... I was one of the lucky ones and I thank God for it too. They WATCHED my condition because they had no med's for me...today they do have things to take... So no one should sit around watching to see what it will do ( like they did with me ) FIGHT IT! Shirley
|
|
|
Post by grammie on May 30, 2009 8:03:51 GMT -5
Interesting thought/topic.....the comments more interesting!!! It sure is an individual thing. I hope to be 'down on the drugs' and would love to be off but I sure don't want to go back to what I was last summer! Remission, that would be nice! I feel one needs to be agressive in their treatment and read, read, read so one can understand if the doctor understands Scleroderma since so many of them don't know much about it. That is the aggressiveness I'm refering to.
Met a gal at my husband's work who was just DX and I've advised her to read, read, read up on it (suggested several books) to make sure she knows the options and best doctor to treat her.
grammie
|
|
|
Post by klw1960 on Jun 3, 2009 15:26:02 GMT -5
Wow, I was gone a few days (our oldest son graduated from High School, whew!) and just read Shirley's posts. I hope to make it to 26 years after diagnosis that would make me 72 and I would be happy to see my boys finish college and have some grand babies. Thanks for the hope! Jeff, you are still the prince of BS! But I mean that with the upmost affection! Karen
|
|
|
Post by Cubby on Jun 4, 2009 17:33:05 GMT -5
PEGGY: Don't EVER feel badly that you are not as bad as the rest of us are or were!!! Just THANK GOD!!!
|
|
|
Post by Cubby on Jun 4, 2009 17:37:36 GMT -5
SHIRLEY: You are amazing!!!!
Regarding the question, DOES SD LEVEL OFF? So far, I have never met anyone where it leveled off--unless they were taking meds to stop the progression. Like I said, I have read that "sometimes" limited scleroderma" has been known to go away by itself, but rarely.
For diffuse, if not treated, it can cause such damage to the internal organs that it never gets a chance to level off. That is just from what I have seen in people who have it. I have met some of them and lost 1 dear friend to this. She only had it for 3 years.
|
|
|
Post by shirley on Jun 17, 2009 12:03:39 GMT -5
CUBBY...I was EXTREMELY sick when I first got this disease... I mean EXTREMELY! I did not have the strength to take a shower....I could not lift my hands to comb my hair ( I still believe that those were Lupus symptoms ) I had PAIN everywhere...ulcers on my fingertips...I lost the tip of one of my fingers ( I refused to let them amputate it ) I Just let the ulcer run it's course ...it took 6 to 8 weeks to heal...when that finally happened my finger bone was sticking out the end of my finger...THEN I went to a hand surgeon and she cut the tip of the bone off but the pain I went through doing it MY way was HORRIBLE! BUT! I saved my finger. I went to the best Dr's around ( U.A.B. in Birmingham ,Alabama ) BUT...when they tell you that there is not anything that they can give me for the disease itself ( They could treat my symptoms however ) then all I Can do is endure it... Sooooo...mine did eventually go into remission on it's own. I was LUCKY and BLESSED...I could have died and at times I wanted to but God left me here for a reason. IF I was diagnosed TODAY...I would go on the AP therapy for sure! I am so happy to see people like you and others that this AP therapy is helping! I wish it had been there for me 26 years ago but it wasn't. Hugs, Shirley
|
|
|
Post by beebell on Jun 17, 2009 15:29:31 GMT -5
Shirley! Amen!!!!! I know it can be very hard but we are stronger than we think... You are awesome! HUGS!
|
|
|
Post by shirley on Jun 17, 2009 16:27:59 GMT -5
Thank you sweetie...we are all so much stronger than we think we are...It is surprising to me when I look back at all the pain I endured but here I am today writing to all of you! YES! WE ARE STRONG! People who have SD are some of the strongest people I know so my advice to all is to hang in there...fight everyday and get the treatment that is available for you... I just wish it had been there for me but it was not. BUT! I won...SD did not win...Thank God! I am blessed..... Hugs, Shirley
|
|
|
Post by Cubby on Jun 17, 2009 20:04:00 GMT -5
Shirley, I could crie right now. You are one amazing woman!!!!
|
|
|
Post by shirley on Jun 17, 2009 21:46:36 GMT -5
BIG HUGS CUBBY!(((((HUGS))))) We are all in this fight together BUT there is HOPE as you well know. Anyone reading this...Fight with every fiber of your being no matter how bad it gets......never give up! Life is too precious. Shirley
|
|
|
Post by Cubby on Jun 18, 2009 16:50:40 GMT -5
U GOT THAT RIGHT!!!!!!!
|
|
|
Post by carolyn12 on Jun 19, 2009 14:21:25 GMT -5
Hi Shirley; You're a brave, blessed woman! ThANK you for the encouragement. I am fighting this horrible disease like you said.
Have a nice day! Carolyn
|
|
|
Post by Cubby on Jun 19, 2009 16:16:21 GMT -5
When I look back to where I was in 2005, 2006 and even 2007, it is hard to believe I was ever that sick!!!!!! I am so happy and so blessed by God and everyone in heaven watching over me and I know many of you are the same!!!
|
|
mumof3
Junior Member
Posts: 51
|
Post by mumof3 on Jun 25, 2009 19:25:20 GMT -5
Hi, I am new to this site but a regular on the Roadback. There is so much info. on the internet, I'm not sure what to believe. From what I have read, the first one to two years are the worst for people with diffuse SD and that is where the most damage is done. Is this true? Then after that there is a levelling off (years 3 to 5). I'm not sure what to believe as there is so much info. out there. Just wondered if someone could clarify for me.
Thank you.
|
|