Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group SCARED!!!!!

Hey ya all,, it's been a while since Ive ben on but I havent been doing so well. workis getting harder nowthat they decided to down size and I lost my line lead possition and I cant really do the grunt work anymore.. recently I went to the urgent care because I woke up with severe pain in the right hip and my arms and legs have been going nimb for the last few months. Its getting harder and harder to walk around and standing causes to much pain.sitting is ok but my legs go numb in about 5 min if I recline everything is ok. I aint sure if I can work anymore since I have to be on my feet all day long mostly in one spot.. I dont know what to do.. I see my doc in apr. I have a feeling I am going to have to apply for disability and get put in a wheel chair. that is what scares me the most. I will be useless to everyone. and a burden to my family...how can cope with this???? I dont have any other skills tofall back on....I am trying to be strong about all of this and laughing it away. and trying toignore what is happening to me. but times like this when I know there is nothing I can do about it is so frustrating. my possitive attitude is almost gone and I feel like giving in to the monster. thanks ya all for listening to my rantings......oak

I am older then I look and I feel older than I am

Dennis,

I don't really know what to tell you except that being disabled does not mean, you are "useless to everyone. and a burden to (your) family." In my long post that I just made, I mention my bedridden grandmother. Well, it is true that she had to be cared for. But my mother and I loved her no less. And even from the bed, she was an important part of our family. At Christmas, we always opened gifts at her bedside. And she was still useful, she always had good advice to give, and she loved to talk and listen. And being a good listener is often one of the most "useful" talents you have to offer your family.

Anyway, may this little pep talk prove to be totally un-called-for, and may your AS miraculously get better. I know it is difficult, but we will always be here for you.

Johnny

hey pain, I read your post my life is simular thanks for sharing with us.. I use to be a physical person always lnding a hand to those who needed it and so use to doing things my self my family aint coping with this at all either they dont care what is happening to me or are afraid of whats is happening..I ask for help and get none..its very hard for me to ask for help my youngest daughter and my wife cry about it when they think I aint lookin but they wont help...if I lose my job I fear I may lose my house. now it soyundslike I want pity but I dont all I want is answers and to be able to do things. it just scares me. being dependent on others sucks......oak

I am older then I look and I feel older than I am

Honey, I don't think there is a single one of us here who hasn't had those same fears. I don't know that there is anything anyone could say to me when I'm full of that fear that might help. But please, rest assured that if (big IF) you end up in a wheelchair and/or on disability, you will not be a burden or useless. You'll be faced with the challenge of continuing your life from a different perspective, tho. It may not be easy, but it won't be useless by any stretch of the imagination.

By the way, you say your next appointment isn't until April. Is there any way you can get that appointment pushed up given the degeneration in your condition?

Many hugs,

Kat

Oak,
You are much more than the sum of all your fears. You are bigger than this stinking A.S. As we turn to the future, we inventory who will allow ourselves to become! Many things change about us, but who you are in regard to what you will allow this pain and lonliness to make of you; becomes a very personal matter. But it is such a matter that begs for discussion. Our family knows a bit about your pain. And we know about being alone in a crowded room. I would not expect too much more from your family than they can take a bit at a time. I have found it takes repeated sessions for my loved ones to understand how much I suffer before they even begin to see what I can not hide.

We don't accept less in life, but we do define our limits for today and often rejoice in remmembering yesterday.

How should we, then live? to the fullest, that we can live, each day to the best of our ability. And if it is a stinking rotten day, then I will rejoice in the sunrise because it offers hope for a better tomorrow. Oak, I have to really look for the "free stuff" that brings a smile to my face EACH DAY. But it is there and I do have to concentrate on being thankful.

your brother,



If there is ever something I can do for you, you would probably be better off talking to almost anyone but me...

Lon

HI oak, Well i wish there was something i could do to make things better for you or give you some words of great wisdom that would make things all right, But alas, i cant ! What i cant tell you , is i've been there.

8 years ago i lost everything! i lost my job, lost my home,my land, my car, my fishing boat . everything!

But theres one thing i never lost ! and that was the love of my family.

At the time i was 30 years old. My wife and i had been married for 10 years with two beautiful little girls, who where at that time 8 and 2. See at the time i didn't know what was wrong with me ! the doctors didn't seem to know. I only found out last year that it was AS.
I had spent over a year walking and working with a cain, taking handfuls of pain killers everyday to keep me moving and working. Then one day it happened. massive muscles spasms. I spent the next three months in bed ,flat on my back or in a wheel chair. needless to say i couldn't work. My wife wasnt making enough to pay the bills. I layed there feeling sooo depressed and yes useless.

To make a long story short, yes we did lose everything but just before we did and on one of my darkest days, my then 8 year old little angel, crawled up beside on the bed and look me straight in the eyes and said "Daddy, ya know we love you right"? i look back at her and said "yes baby i know ya do" Then with what seemed to be the wisdom of someone ten times her age she said " then dont worry about the bills" "its only stuff ya know" as long as we have you we will be alright" !!!! Thats the first time and i beleave the last time my daughter ever seen my cry. But ya know she's was right
Its not the stuff in this life that counts ! its your family and the love you can provide not the things you can provide..

well i hope this helps in someway and if ya ever need to talk let me know , i'll give you my phone number. Take care and all the best.

Keep on Kicking



Martin

"Trying to fly on broken wings"

Hello,
I am a new AS member named Ann. My husband has the AS and I am the wife . I read your mail, and don't be scared. It just seems worse than it really is. Everyone has bad days as well as good ones. Get a grip on it and get mad and then get on with your life. You have a great support group, and they are a bunch of great people to talk to.
I have read a lot of the articles on AS and I know how a lot of people feel. I was blessed with a husband that is an optomistic person. He has been battling his AS since 1985. He didn't know he had anything wrong with him, until he was without a job. We filed for disability in 1994 when his job with Chevron was voluntarily terminated. He has had 5 knee surgeries and one shoulder surgery, one thumb surgery, all on the right side of his body. It all started when he was hit in the head with a oil pumping crank arm of an oil well, that weighed 20,000 lbs. He had his hard hat on, but the well was not suppose to be operating at the time. OSHA had not inspected the new well to turn it on.
We found some relief with a Chiropractor for several years and swimming at the Physical Theraphy unit. (The company got out of the injury) they bought off the Doctors .
Being disabled is not that bad. We now have more time to spend together. We can go fishing and go to the mountains in the summer. We moved in with my Father last year.
My Mother died 6 years ago, with lung cancer, and my Dad has Alheimers. It was a major decision to give up my house and move into his home. My husband and I have been married for 36 years with two boys. My husband wanted to be with my Dad and they get along great. I am very lucky, and everyday I get up and Thank God I still have the both of them to help . It affects the spouses as much as the individual that has it.
We purchased a Select Comfort Bed and it is the best thing in the world to sleep on. As a matter of fact we have four of them. Three in the house, and one in the travel trailer. Talk about making a difference in your life, it will.
A Chiropractor will help some pain. They have a unit that is called TENS unit. It is a portable device that stimulates the nerves from hurting. It is the size of a small radio, and battery operated. We have several of them, as the pain medicine was not working on him.
Enough of me going on. You can e mail me at any time, dabrozek@tstar.net I am still trying to figure out how to use this program.
Take care and be optomistic, Tomorrow is going to be better!
Ann

Hi, oak:

Most of us have felt the same way, and have been through what you are experiencing in your life right now.

I was able to control my episodes of AS by fasting, and I am sure that this allowed me to work many years longer than otherwise possible. It was starch-ignorance which made my periods of remission shorter and shorter until I required NSAIDs, which accelerated my AS considerably. This need not happen to anyone in the future, and I hope that it does not.

Life is tough enough without this particular health issue, but today it can be managed by anyone with the will to do so.

You have the incentive, but you should value yourself as much as your family does.

Good luck to you,
John



"You can know the name of a bird in all the languages of the world, but when you're finished, you'll know absolutely nothing whatever about the bird... I learned very early the difference between knowing the name of something and knowing something."
R.P. Feynman,

Oak,
Your family will love you no matter what. Have you spoken to your doc about getting your hips replaced? i had both done in 99 and my life has improved milestones. PLEASE consider this, it really is not that bad and in three month you'll be pain free in the hips.
Sending you blessings, Yoly
oky-doky,,, oaky :)

heya kat, thanks for the support. there is no chance to push the appt. up unless the doc says so he is very good and is very popular..we shall see tho....oak

I am older then I look and I feel older than I am