Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group ***URGENT, HELP MY CHILDREN!!

Dear Karenmae,

I have known AS pain and I have known the pain of wanting so desperately to help one of my children through what seemed, at the time, an impossibly difficult situation. I would suffer the AS pain longer and worse to spare my child. I feel your anguish. I will certainly send notes of encouragement to your son and daughter. It is little enough to do. You must also find a way to cope. For me, I just do what I can and then put it in God's hands. Let someone else help carry your burden Karenmae.

Love to you,
LadyBones

I thought it also might be noteworthy to let you know that Jason also has a very strong drug addiction to oxcy he is trying to conquer which just complicates this even more. He is struggling to stay sober. As for my daugher, I believe she does also...but is not addressing it. She also is on oxcy.

Karenmae

Karen,

I will definitely send a note to your kids!!! I hope it helps!!

Have you looked into local human resources? Is there a support group for chronic illnesses? That may help!! Also, if they feel like it, tell them to use the local library to get to KickAs!! It will get them out of the house, too!!

What does your son normally do for a living? What does he like to do? Maybe there is a job that he can do to boost his confidence!!!

BIG HUGE HUGS TO YOU ALL!!! If there is anything I can do, just let me know!!
Holly

yes,the oxcy is what causing him to think unrational...they must go into withdrawal rehad ctr ASAP...they need help to deal with this also....my friend son was on it and it cause all kind of issues w/family too...he also try to ween himself off of it,but got the help from his doctors and rehab....cause he begain having all thoughts racing in his mind....everybody can't take this drug/you and family are in my prayers and thoughts....hope we can help to make a different by sending our love vibes,cards,prayers and hugs.....we care

Karenmae,

Since your children can't take pain meds, maybe the doctor would help you get Remicade treatments for them. I would even go as far as to contact the company yourself and tell them about your children. It's worth a try.

I am a 24 yr old man who also has AS, so i think i can relate to your son, I have sent two letters to the m/f persons who are suffering and hope it will be of some help, I know everyone here has helped me. Hope your feeling better soon and my letters help a bit.

As far as Remicade...the commumity care center at our local hospital is trying to help get funding. It is very hard to get the meds you need when you either do not have or insurance. Also, when you do.. they will not cover it. He has been on Enbrel in the past, with no relief through a foundation but for only four months they covered it. My daugher recently started on Humira...but only after two months my insurance put an end to that. I really am resourceful, I have been trying every avenue possible with every foundation, assistance program for the last year. I always run into a brick wall. The drs have tried appeal after appeal. Well just as I am writing this a call came in from my daugher, crying...I need to take her to the hospitial, she is bad coming off of oxcy and wants to go into treatment....Here I go again, have to run. Also, yes Jason is in intense treatment and counseling.
Karenmae

Klem,
Just got back from admitting my daughter to the hospital. It was nice to here from you! Hope you and your family are well. I would like ask...I am not a computer wiz, the picutre I sent to you of of my family last year...my husband sent that last picture to you. Is it possible for you to put it on the site? I hate to bother him, and I do not know how to do it. I just thought it would be nice, I know I like to see who I am talking to.

**ALSO, I am sorry to everyone here at KA. I do not come here often, but sometimes the information I receive here is to much reality... and I get very sad! I support my children in every way. I have researched diet, alternative treatments and have tried all. I do not try to ignore it in anyway, but if I read every day my hope seems to diminish. So forgive me for my weakness.

Hi Karen,

So very sad to hear about your children - especially your son. I can sympathize with you as I also have passed this wretched disease, and worse, on to my precious daughter......

I can't promise to put pen to paper at the moment I'm afraid, but my thoughts and prayers are with you all, and my heart goes out to you.


As some of the others have already said, it would be great if you could persuade your son to come here and read all the messages of support and advice for himself, and learn as much as he possibly can about AS, as well as seeing that he is far from alone in his suffering.

Love and best wishes to you and your family,
Sue

Hey Karen,

I will also send out a letter to each of your children. I know it it hard but hang in there there is a rainbow out there for you and your family and remember the rainbow was God's promise. When my sister gets is having hard times that is what she looks for the rainbow.

Hugs,
Donna