Kickas.org Forums Ankylosing Spondylitis General Discussion Friends and Family Support Group new and reluctant to talk

My hubby was diagnosed with AS about three years ago. I havent really tried to talk to anyone about it. It's not like talking about it is going to change anything and I think I am feeling a little worse since I read all of the posts. I dont know how to feel right now. I dont know if talking or reading about it is good or bad. I really dont know why I am writing this....Maybe its a "cry for help."

Hi Christine

the site. Don't be afraid of this AS monster is not the end of the world. I have had AS for about 5 years now that I know of anyways and I am still here and going on just fine. I'm just glad that I have my wife here with me to fight this monster together or it would be a whole other story. One of the biggest things to help us is that our spouses understand and help us through the rough days.
I can tell just by you coming here and posting that you are a good woman and that you care about your Hubby alot. He is a very lucky man to have you by his side fighting this with him.

John

Hi Christine,... and Welcome to KA!!!

Sometimes I think it's easier to deal with a condition you have yourself, than it is to watch a loved one suffering with something like this. It must be harder to get a real sense of it, and to know what your husband might be feeling.

Perhaps chatting about it in here a bit will help to bring you new insights or to a new level of acceptance about your husband's AS, one that impacts both of your lives. I know it's a rather personal issue... reading can add fears and/or help to dispell some fears. Please keep in mind tho that not all the scary aspects you might read here will foretell your husband's future. AS affects everyone individually so we won't all have to deal with all the troubles AS can bring... but at least when we do, we have friends right here who can relate and help us fight our way through.

I've had AS since I was 18+ yrs old and now I'm 43 and I've had a good life so far (despite lots of pain), and with new research and treatments things are apt to keep improving!

Hope you'll feel free to jump into any of the forums here, and ask whatever questions you might have... folks are always happy to try and help or offer suggestions on just about anything.

Take care, Christine!
mig

Christine

I do not have AS, my son Eric does. Eric was 9 when he was diagnosed. He is 15 now.

You want to talk scared? I was never as scared as I was when my baby was diagnosed with this disease. I had never heard of it, and the more I read, the more I cried. The more I cried, the more I prayed. It was a circle that I was in for a while.

Then I found this place. I have learned more from the good people here than I could from any Doctor.

I have made some very good friends, and had lots of shoulders to cry or lean on.

You say that being here can not change anything, but it can. Honestly, it really can.

You can learn all about the new meds that are coming out. You can learn about trying to keep the disease in control with diet, you can learn what others have gone through to see if any of it seems the same. You can keep your sanity....Honest, this place is the best.

I remember nights when I was so scared, people from this website, people that I have never met stayed up with me all night. Talking to me, calming my fears, being there for me.

I have learned enough from the people here to challange Erics doctors from time to time.

If I asked the doctors about trying something, and they said no, I always just let it go. Now I debate why are you telling me no, explain it to me. Sometimes I will agree with the doctor, and believe it or not, sometimes the doctor would agree with me.

I have gone to gatherings that the good people here have put on to meet them. It is like a member once said.....it is like meeting a friend for the first time.

Please stick around. The folks here really can help you.

Maybe your husband will join also.

You can send me a private message if you would like to talk more privatly. Go to my home at the top of the page and click on it. It will bring you to a screen that says PM on it.

Good luck, and please stick around. We really do care.

Hugs
Lori

Lori,
Thank you so much for your kindness and encouragement. I went to bed last night and got some sleep and this morning I am not feeling like the world is going to end because my husband has as. I am still scared, very scared. It really freaked me out to read some of the posts that I read yesterday. Others are living out some of the things that I fear the most. My husband is a member of kick as and it is like a life line for him. He has been trying to get me to go on and I just wouldn't. I'm still not completly sure how I feel about it, but I think I will give it a try. (That should shock him...I told him last night that "it just wasn't for me.")
I am so sorry about your son. I cant even imagine a child dealing with that kind of pain!

Thanks for your help!
Chris

Chris



I'm so glad you're going to stick around. I completely understand how overwhelming all the info can be. Man, when I was first diagnosed I was terrified and the first thing I ever heard about AS was that I could die!!!

Of course, that isn't going to happen, Chris. That's a worst case scenario if there ever was one and I rather think it's pretty darned rare. Mel is completely right when she tells you that we all present this disease differently. The Chinese have a saying that there are as many philosophies as there are people in the world. The same goes for AS. No two cases are alike and we all respond differently to the various treatments.

As for you and your fears, they are perfectly valid. I imagine your life has been turned upside down since hubby's diagnosis. The constant worry for him and the future, medical bills that need paying, and the love you feel for this man who's pain you feel helpless to ease, they do take their toll. I watched my mother care for my father my entire childhood. He had diabetes and resultant heart troubles, blinded in one eye back when laser retinal surgery was experimental. She was so young and had to grow up so quickly. The stress was huge, but somehow, somewhere she found the strength within herself to care for him until he was well enough to do so himself and raise two girls.

Illness does that. Regardless of whether we are the one with the illness, or the spouse/partner, it makes us delve deeply into our souls and, often, we find wells of strength we didn't know existed. Coming here is your first step toward finding your own inner strength.

I'm glad you came.

Hugs,

Chris, welcome to this forum. I'm glad you took the steps to join us. Your hubby is a great guy, with great faith, and we know God looks after each one of us. Your hubby has an excellent attitude, and that is key in overcoming this disease.

I really welcome you to our KickAS family, and I hope and pray that we can help allay some of your fears of the unknown. Some of the info gets quite technical sometimes and can be intimidating, so ask questions and we'll help you to sort things out. While it's true that talking about things won't change the facts, the most important thing you can remember is that when we take that which we fear and bring it out into the light, we can see it for what it really is, and how it's really not what we thought it would be.

I'm the one in our family with the AS, but if there's anything I can do to help you, please ask. You can personal message me or drop me an email-your hubby can get my home email address from the other forum, he knows who I am and how to reach me-we've spoken before.

Chris, I look forward to being your friend...

Glad to read that you are going to give this place a try. Don't let it scare you when you read some of the sadder stories here. AS hits us all to differing degrees. Its impossible to ignore the more severe AS possibilities altogether but there best dealt with the way all peopel deal with death.

Sure death is out there for all of us but its not in the forefront of our mind every day and in fact probably not in the forefront of our anxieties most days. The possiblities of what AS can do can make us appreciate each day more and make much of "the moment" more salient.

There are some real terrific people here. You probably couldn't do better than Lori for a member of any group and she doesn't have AS so she probably could be invaluable for any family member who has to watch and worry about we folks who do have AS.

There of of course in any group inane and mindless people like myself but I am harmless. Use this place like any good tool. If you've got a nail that need whcking this place ain't gonna help. Your feeling alone in the recesses of your mind and anxieties about a flare your husband is having come here even if its just to peek about.

If your husband is using this place as a lifeline he's probably pretty wise.

Chris,

Welcome to KA. I'm sorry I didn't see this post earlier. I feel like I've already met you, and you are a wonderful, supportive wife to a very dear man. When I first came here, it took me two months to actually start posting. When I first joined I read things that really scared me. I thought, "Is that what I'm in for?" But not everybody experiences the same symptoms, or the same severity, as one another.

Sometimes the pain of the disease isn't half as bad as the fear, or the feeling of being alone. The fact that your hubby has someone who stands by his side and wants to learn and understand more about AS will give him more comfort than you'll ever know.

Keep your faith. It gets better. If you want to, you can pm me as well. Anytime you need someone to talk to or lean on, we'll be here.

Hi Chris,
Wanted to welcome you and tell you. you're not alone. I do not have AS, but my husband does. I also felt like you did at first about coming here, Mike (my husband) showed me a few times and I acted interested, but truthfully I wasn't, because I also judt "didn't want to know. Since then, I have made a few friends, I think I have helped some too. I found it important to talk about mu feelings. For a long time and still sometimes, Mike doesn't understand why this disease effects me, after all he is the one in pain. But the truth is and I think he sees it more clearly now, it effects everyone who loves him. But especially me, our lives have changed drastically because of As. But I do look for the positive in every situation, I have to, or I'd go insane and the positives are, I have found out I am a much stronger person then I gave myself credit for. I realized that Love really can conquer all. I have realized that I can always find even a speck of faith which gives me strength and hope when I think I have run out. I may never understand why this happened, I can feel sad and say why me, why us? But that only brings you to a lower place, I mean, humanly, yeah, we all have those feelings from time to time. But no matter what situation life throws at us, we always have choices and God has always given us a free will...I choose to accept the things I can't change and be thankful for the blessings in my life. I grieved for awhile, I still do from time to time, because I feel like we are missing out on a lot of life, we are too young for this etc...but I am so thankful everyday that sick or not, I still have Mike, I'd rather have him A.S.and all, then not have him at all. Please feel free to chat with me anytime, I really understand what you are going through. Keep the faith, Take care, Sheila
PS. I like your user name...I am an eigth child