Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I need to know I'm not alone

I found the name for this website on another site. I can't remember which now. But since I have found it, I have to check it everyday. I have felt so alone for some time now. My condition has been getting worse over the past two years. This past summer was harder on me that the prior, and now, I feel I've lost all of my life. I can't work anymore. I tried to work at my husbands business back in October. I "Paid" for it for a month. I've never been the same since. I've been using a cane for about 6mns. At first it was just "bad days", then all the time. I recently bought a wheel chair at a resale store. Again, it was for bad days. Funny...... there is more bad days now than good. I just turned 31. I was so depressed before my birthday. Why celebrate when you feel so bad?! I've had trouble since I was a teen, really noticed it when I was prenant the first time in 95, but wasn't diag. w/ RA until after my second baby in 99. Through my own research, I found and was confrimed w/AS only a yr or so ago. I'm deteriating so fast. I get so depressed. I've never been one to cry much, but lately, its all I can do. I try not to feel sorry for myself, but sometimes I just can't help it. My husband is so wonderful. He made me quit working before I would let myself. He never complains (well except that the doctors aren't doing enough). He made me hire someone to clean my house and even pushes me to take it easier on myself. But I still feel so guilty....that I'm not much of a wife or mother. I worry about money and being a burden. I'm hanging onto hope that Kineret will help me. I start next week w/ the shots.
I guess I just needed to share my story. I love this site. It has taught me a lot and helped me feel less alone.

Thank you for letting me "get it off my chest"

Debi

Debi,
You are very much not alone, although it may feel that way. I too found this site recently, although, I had came across it some time ago. I have decided to "de-lurk" and take an active stance. I am glad to hear that you husband is taking care of you. There have been several occasions that I have been extremely frustrated with my condition, and my wife stood by me and listened to my pain. I was diagnosed with AS in '96, but living with the symptoms for many years. She has been wonderful, and I love her dearly for it.
Don't let this get to you (easier said than done). Work with your Dr's, to try and get the best possible regimen. I have never been one to take meds, but I finally realized that in order to have some sort of life I was going to have to. I should exercise more, but after working 45-60 hours in a week, I just really don't feel like it. Good luck on your shots, perhaps that will be your miracle to a better life.

Craig

Hi Debi and welcome. I do not have AS but my boyfriend does and he is 34 years old he has recently had to quit work also. As long as you have someone there to stand by your side it will be ok. just think some of these guys on here dont have anyone , or they have someone who doesnt really understand. This site is wonderful and you will meet many great people on it. Don't be sorry for venting in here thats what this site is for . You have the right to feel sorry for yourself, just dont let As kick you , you have to fight back and kick As. I know that is easy for me to say because I dont have it, but beleive me I live with it everyday and you cant give up. Good luck and hope to see you around. Vent anytime you want, I hear it is good for the soul if nothing else {{{{HUGS}}}}}

Hi and welcome!!

Yes, we all understand what you're going through. You've found a great site here -- it can help in many ways.

One suggestion -- MANY people have good luck with the starch-free diet, if you haven't already checked out that section. Many people even quit meds and are low-pain or pain-free. Just a thought . . .

Again, welcome!!



Patty

"One day can make your life. One day can ruin your life. All life is is 4 or 5 big days that change everything."
- - - Riding In Cars With Boys

It's a pleasure to meet all you newer members of KickAS. Actually, we don't think of ourselves as members but rather, we belong to one big family of people with the same problems.

Don't be disappointed if there aren't too many responses to your posts over the Christmas holidays. As Bob Cratchet would say, "some of our people have been making rather merry this week" Things will get back to normal soon.

Glad to hear that you have such a great husband Debi, I have the same feelings about my wife and for the same reasons.

Hope to get to know all of you better as time goes on.

Welcome to kickAS,
George

Breb Assyl

Hi Debi, Welcome to KA!! It's nice to hear that your husband is so helpful! That's half the battle!! I can only say that as time goes on you will be able to deal with this disease better. Coming here and talking really helps! The support here is tremendous! Hopefully you will feel better reading the responses from people going through the same struggle.
Take Care....Hope

Just wanted to say welcome to our wonderful site, so glad you found us, and looks like just in time. KickAS has a way of chasing the blues, putting a smile on our faces whether we feel like smiling or not. I've had AS and RA for the past 25 years and over time have learned a few coping strategies, as have most of us here. The no starch diet is worth a try, can't hurt, might help, and there are also a lot of meds options (check the pharmacy forum) or if you have a question about a specific med there is bound to be someone (or many people) here who have had experience with it. I too was reduced to hobbling on a cane until I finally found something that worked, one of the new DMARDS, not for everyone but works for me, rarely use the cane these days and can now do so much more of the things I love to do. Exercise is extremely important, even when you least feel like moving. So stay tuned, and as Old George said, once the holidays are over there will be a lot more action here.

Cheryl



Sugar Magnolia wishes everyone a happy holiday season

Hi, and welcome, so glad you decided to stop lurking and join the party Until last year I ran my own business out of my home and there were days I really had to force myself to stop working and exercise! I guess that's why God invented dogs, nothing like four big brown eyes looking plaintive to force me to get out the leashes and go for a walk, and walking (to me at least) is the perfect exercise.

Cheryl



Sugar Magnolia wishes everyone a happy holiday season

Debi, This sight is a real life saver! I was diag. in 1999 with symtoms several years earlier. Before I found this sight I was beginning to believe I must be nuts. My Dr. didn't tell me a lot about AS ( I truly believe that he had no idea what all the symtoms where ). The last big flare I had lasted the better part of two years. I was anemic, I had ringing in the ears, lots of pain and stiffness, unable to sleep and lets not forget the depression. It was only after I found this sight that I realized these problems were a direct result of AS and that I have had them several times earlier in life to a lesser degree. I'm doing fine now in part thanks to this sight.It is a good thing to know you are not alone!

Steve

Hi Debi,

Welcome to KickAS from another Hoosier! I have to confess that I don't know where Syracuse is, though I live in Connersville, which is in east central Indiana. I have very mild AS--I can hardly believe that I was diagnosed with the same disease that has had such a devastating effect on most of the people here. That's why I'm a halfASkicker But, even though I don't really need a support group for my AS most of the time, I love this site and the people here. So, I've been a KickAS groupie for the past couple of years. I hope that you will stick around and let it work its magic on you. And that hubby of yours sounds like a keeper!

Connie