time to introduce myself

[babi68]

Hi all. I am a 37yr old woman with FSGS. I have had the disease for about 17years, and went into renal failure 2.5 years ago as I caught an unknown virus. At first the doctors thought I had meningococcal, which I didn't in the end. Anyway the virus killed whatever kidney function I had and then the dialysis started. It really wasn't a shock as my whole family have been dealing with kidney failure for 30 years. My mother passed away when she was 28 waiting for a transplant(actually it was the dialysis that killed her). Thank goodness dialysis has improved over the last 30years. My grandfather,uncle and older sister have had transplants. I am waiting for one, and my younger sister has the same disease as me, although she is not on dialysis yet. I grew up thinking "fistula" was a european word. (all my family are Hungarian). I feel bad for my grandmother who has seen us all get sick with kidney disease and sometimes she thinks she is punished by god, but I tell her god chose us as he knew we could deal with it and make us stronger, even though some days I just want to give up. I don't tell her that of course as she is 78 and tell her I feel good and everything is great.
   I have 2 kids, my daughter who is 14(going on 30) and my son, 16.I have been with my husband for nearly 18 years. He was going to donate his kidney to me, but unfortunately he has only one. I had another friend go for testing but I didn't like her blood and they couldn't go ahead. I have another friend who approached me at the beginning of the year, but she now seems to avoid me whenever I see her. I think she has changed her mind, which is cool with me as I understand it is a big decision. I appreciate her even offering.
    Anyway, as I said I have a 16 year old son. He was diagnosed with Autism when he was 3. Life has been difficult, unfortunately no family members really seem to care, so there is no support for us. We live 3 hours away from family and they never want to travel or visit us. Don't really have many friends either. I noticed when people find out about my son, or that I have a chronic illness they ask how everything is, and as you are talking to them they are trying to get away. Maybe I am just boring.I found this site and really enjoy reading the posts and seeing others have the same difficulties and we can go somewhere to have our say. I enjoy the games too
 I live in the capital of Australia, Canberra, which is a nice place to live. The dialysis centre here is o.k. The staff are nice, but there are a couple of patients who annoy the crap out of me!! Well, that's it for now, more another time. Liz

[Epoman]

Welcome to the board and thank you for sharing your story with us and I hope you visit us often, this is a place to let it all out and tell it like it is. I'm sorry to hear about you and your family's medical history. And don't feel about about your family 3 hours a way. My wife and I have family 20 minutes away who we never see, maybe once a year if that. Relatives sometimes suck plain and simple.

Oh and don't get me started about patients who annoy me, MAN there are a few patients that I can't stand and they annoy the HELL out of me. GOD forgive me but I can't stand one in particular he makes my blood boil, he's a mister know it all and thinks he has all the answers.

Again welcome to the board.

[kitkatz]

Hey there.  I taught autistic kids for a couple of years.  It is a very challenging thing to do and I cannot imagine what a parent goes through 24 hours a day.  Good luck to you and your son.  If you want to email me feel free. 

[Rerun]

On the news I saw where there was a High School Basketball game.  The boy that helped manage the team (water boy) was Autistic.  He worked so hard that the coach let him suit up and put him in the game the last 4 minutes.  The kid was a dynamo!  He was making baskets from all over the court!  Three pointers!  He scored 20 points the last 4 minutes of the game.  The crowd from both teams descended on this kid and carried him off the floor.  His mother was in tears!  It was the most moving story I've seen in a long time.

Now the kid is being interviewed on Good Morning America and everyone wants to talk to him.  President Bush had the boy (Jason) meet him at Airforce One and walked arm and arm with Jason and his Mom.  It was so cool. 

They are now wanting to make a move of his life.  This Will advance the education of Autism for everyone.

[babi68]

I saw the video on the Guzer web site. I felt quite proud. My son doesn't do much sport. He occassionaly throws the ball around with my daughter and we tell him to do defence on her. He prefers his playstation and being by himself. I wish my daughter would do 3 point shots like the young man.  You know I really wonder how it is that I am sane as life here has been really stressful. My husband re-injured his back in October and is only now starting to recover. Sometimes I think it is amazing that we are still together, but I suppose it makes us stronger,even tho sometimes we want to kill eachother. Only kidding, he is a really good man. A few people I know with disabled kids are single parents as their spouse couldn't cope, but here is my husband with a wife on dialysis and a kid with autism.
 I must say my sons teachers over the years have been excellent and so caring. He attends a special school and just got back from camp with them. Kitkatz you must be a patient person. That is something I have noticed with his teachers, I myself do not have any, and I am a stubborn cow. Christopher is alot easier to handle now. When I first got sick he was very violent and I got the end of his fist a few times.I never hit him back, but I could tackle him to the ground quite well, but not any more. He is 6'2 and I am 5'3 and I'm not as strong as I used to be. He has calmed down alot now too. I think I need a holiday........liz

[kitkatz]

I know when there were any changes in the autistic kids lives there was turmoil in every part of their lives.  It is a good idea to warn teachers if things are going on.  It is good your son is adjusting to your illness.  I know it was hard with my two normal girls for them to adjust to having a sicky mom.