I am a person who always looks for the positive in everything and this has been my salvation since being diagnosed with Scleroderma. It is a very lonely disease as it affects so few of us,  our disabilities are mostly invisible. Pain, internal problems, and chronic fatigue are not visible to others unless they know you, this can be a blessing but can also cause large problems. I have my own web site if anyone would like to learn more. http://communities.msn.com/SclerodermaYou

 

My name is BlueLilly.  My birthday is October 16, 1978 ( so I'm 23 as of 02/12/02 ).  I have known all my life that I was different from others.  I was diagnoised with Deppresion and Social Anxiety Disorder around July of 1998.

 

I have sense been diagnoised with Chronic back problems.  I am currently signed up to start my first PT for these back problems.

 

My goal for this site is too have people I can talk to and who can relate to the problems I have.  I am also just plan looking for more friends :-)  Maybe online as well as offline.  You never know.

 

Thanks for a great site,

BlueLilly1234

 

 

im just me love sports and music and computers, can teach people how to make sites and wanting to make a difference in my life  ask for other info :) on msn messanger as [email protected]

Hi!

Janie here!  I am the wife to Paul of thirteen years and I have four sons.  My two oldest have adhd and autism.  Iam also living a life with limitations.  I need to keep my stress levels low to prevent lupus flare ups.  It is going to be wonderful to meet you all!

Be careful of what you say and do to others because what comes around go's around and it just may come back and smack you in the face.  HARD!!!!

States are very lax in mandating accessibility laws ( federal ada laws ).

states and county's quote "we don't enforce fed law".

Fed law is minimum requirement for the country.so follow them by adapting them and enforce your own law instead of grandfather clauses .

I'm not the one to talk about me being brain damaged. It happened when I was born so it's extra harder on me to even think. I'm just saying thatbecause of experiences I have gone through, I would like to help. In other words, I'm there for you no matter what.

I am currently in transition as I try to go onto SSDI.  I have worked with people with disabilities in some capacity for over 25 years.  I am at a point where I must look at the wear and tear that is occurring with my own body, thus I am now looking at going on disability.  I am hoping that the new free time will allow me more time with my family and friends, something that has been at a very low level while trying to work.

I am active in the local bicycling community as a United States Cycling Federation official.  I am still able to ride my bike, though not as far as I would like, which keeps me active without wear and tear on my joints. 

I have 2 wonderful children, and we are expecting my second grandchild any day now. 

I joined this group specifically to gain and share info from experiences in the life of a person with SCI.  I'm Kyle's caretaker and want to be as effective as I can.  Any words of wisdom, advice or encouragement will be appreciated.  Although my son is only 1 year post-injury, I've learned so much since he's been home.  Specifically, I know quite a bit about wound care and the importance of good nutrition.  I'm interested in any and all on-going SCI research, devices that could improve Kyle's upper body strength and/or stimulate the muscles he's not able to use, and any "coping" advice that would help Kyle and the rest of our family.

Thank you.

So glad to be included here.  It's been a VERY long, painful life, but I'm still here and still willing to make the best life I can.  I managed to give up career, family, friends, financial security when hit with CFIDS, and survived by finding other things that brought a sense of accomplishment and joy.  Over the years the arthritis and "other ills" have slowly erroded away even that.  Most recently, the Fibro (combined with the OA in all major joints) has rendered me nearly house-bound.  I don't like it, and I'm having a hard time accepting this on top of the others, ya know??  Add to that a miserable personal relationship (we "own" a house together... long story) and life just ain't pretty right now.  I really hope to gather information I can use for decision making.... but I also want to support, love, and encourage others.  I've had a few wonderful "cyber-friends" that have held me up over the last few years... and I want to pass it on.

I'm a casemanager for United Cerebral Palsy Assoc. and I am just starting my new job this week, this is something I have had to do to help ny son, all of his life so far, and with the medicaid waiver he is living independantly out in the community with supports in place to help him. I would like to see others have this same opportunity for a quality lifestyle. If I can be of help contact me at:  [email protected] , it is a pleasure to serve.