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

Karenmae,

If you (and your children) feel comfortable with it I have access to a VOIP phone (free long distance) and would be happy to contact your son and/or daughter.

I have had similar (as I am sure many AS'ers have) struggles and experiences during my long journey with AS. I have only just recently successfully managed to get regular Remicaid treatments for myself after a two year buracratic nightmare where I was consitenly discourage by many many individuals and even the medical community itself because they just did not get it.

Right now I am on the cusp of a "new life" and am launching a new career in the non-profit sector with some friends (my best being another individual with AS). We are creating a new type of organization in that it is run by and for individuals like ourselves, Hard workers, dealing with difficult, challanging and complicated personal situations. Our aim is to make it easier for those who follow us and to make a real life for themselves in a world that denys us real, long term, access to many traditional job markets.

We work mostly online via interactive web and via a VOIP telephone (free long distance) systems. We are committed to creating a "workplace" / "corporate culture" where the individuals specific needs and limitations are taken into account.

It has not been easy for any of us and we have all had to learn many new things and put in lots of hours and so forth but in the end it will be worth it because we impose no artificial glass ceilings on ourselves and we are commited to keeping it that way. We do great stuff including advocacy and support work and fundraising, outreach and so forth.

We all have a wide range of life experiences (ironically, this is one of the "side benefits" if you want to call it that, of being regularly discriminated against, in that we get lots more experience than most people in dealing.

Anyway, I would be glad to discuss our organization with them if they are interested. It is hard to sum us up in a nutshell but basically it goes something like

"a place to go and a way to get there".

We do our own fundraising and advocacy and try our hardest to leave a clear and very wide path for the individuals that follow us. It is really difficult work, blazing new trails where their are so few, so we need all the help we can get.

Cheers,

Chris

Hi, I have printed out their addresses and will send off letters...I hope in time...in the meantime print out these responses to share with both of them...so they know that there are ASkickers thinking of them...

AND tell them, especially your son, to log on here and just let it all out, there are several thousand people who understand....if no computer, get him to a library...

I am so sorry for your pain over this and your children's pain, I hope we can all help in some way...hang in there...

Peace
Linc

Gidday Karenmae,i am glad to hear that Jason is in counselling and i really hope your April will try to do what needs to be done.Hey....yipee....tomorrrow is one month for me no SMOKING
Ifeel a little bit sad ,,sick ,,and hanging for a smoke especially when i drink...mmmmmm...thats a real killer after 26 years..but to all my friends amazement somehow i am breezin thru the days and now it is a month...now even I wouldnt have taken that bet.It just shows you u can do some things u never thought you could have dreamed.Sent 2 cards off today.karen let us know how you are and your family.,, . You are an amazingly energetic and resouceful ,caring, loving mother. jUST WANTING YOU TO KNOW THAT YOU ARE DOING THE GREATEST.....PLEASE TAKE CARE....JUDE2

Thank you all for your words of encourgement, thoughts and prayers and also to all of you that are writing to my children. I am sorry I have not responded to each and everyone of you to your posts...right now I feel overwhelmed once again. Right now both children are really struggling with the oxy thing, but both are in treatment. Jason was just released two days ago and my daughter released from inpatient yesterday, she still has outpatient everyday for a week. I am so worried, how will they be able to cope without pain meds? Because of their addictions they cant take narcotics. They started to take oxcy because of AS and the pain, now the meds has caused this addiction. Getting of oxcy is so hard anyway but then you add the need for pain control will make it so much harder to stay away. My mind then wonders...and wonders for so many things. Will they be able to find a job, how will they support themselves, then for fear of them getting into trouble with the legal system. How far will they go to get it if they need it? I work in the court system and just today had a young man addicted to oxy in custody and he many and multiple charges that have resulted from his addiction; Money just to get his drugs, Burgulary, theft, forgery and the list goes on. Then I had to listen to the mother plead to the court for her son to be released. I almost had to remove myself from the court proceedings as I could no longer hold back the tears and snot running down my face. I could feel her and her son's pain.
I sure wish their was a magic pill that I could take to shut my mind off...even for just a little while.

Thanks for listening
Karenmae

I know how hard it is. I am 38yrs old,started on Oxys about 8 yrs ago and really abused them for the last two. I did'nt know how bad things were until I went through a divorce, lost my job, and found myself gobbling down Oxy's by the handfull. My friends and family constantly told me that I had a problem but I did'nt listen. The day finally came when I was told by my best friend that he was'nt going to watch me go through this anymore and he literaly took my pill bottle away and gave me just enough to get by and demanded to hold my next bottle or he would tell my doc to cut me off completely. Now a month later I have a better sense of reality, am more focused and appreciate life a whole lot more.
I know that once your children get the help they need and overcome the addiction, they too will appreciate life a whole lot more and although things look bleak and this is a hard time for all of you, the good times are ahead, trust me. I wish you all the best for a happy future.

Steve

Hello Karenmae,
Your pleas remind me of my own mother, who has been going insane over my sister and me for quite sometime! (Not always over AS though!) I am actually going to visit my family in Neenah WI this weekend, I will email you with my idea... Wondering if dotyisle is thinking the same thing? I feel for you! It kills me to think what my mom goes through everyday with a kid like me!

Stever, so do you still take oxy? If so how can you do that if you have had an additction and misused themf? How can you control it? Also Chasie, Is your mother as NUTS as am? Dotysle has many good ideas re: starch diet, my kids will never be able to follow it..do not want my kids to think that if they do not eat lettuce for the rest of their life...it is there own fault they are sick!
If you would like to talk PM me and I will give you my Phone # Karen mae

karenmae, how are your kids doing? They should have received some of the cards and letters by now. What did they think of them? Did that help?

I hope things have calmed down for you a little. I know it will be a long road, but hopefully you'll get some breathing space once in a while. Keep your chin up.

hi karenmae, i'm so sorry to hear of the awful time your children as well as you are going through. i was just recently dg'd and maybe my experience of doing everything i can to keep my chin up will help them a little. i will send notes off to them as soon as i can. stay strong for yourself and your children. renee