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#384445 03/25/10 08:02 PM
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Hi,

From all the posts i have been able to read, i surely understand that marraige, love & As have worked for most.

But now here is my situation - i am male 33 years diagnosed of AS in April 2008 but due to my stupidity and lack of info, my AS accelrated very fast as my diet was 100% starch most of the time before. In the early 2007 i had taken a X-ray which shows evertyhing normal but in Dec 2009 X-ray shows 3 of my lumbar and 2 of my Cervical vertibrates are fused.

Though i can walk for a 1km at a strech and climb upto 25 to 30 stairs independently right now (still have lot of difficulty). I am on SAAS tabs (2 morning and 2 night from the last 3 months) with this as my back ground. please let me know your opinion on the below

1 Do you think that one with AS should get married?

2 What will be the quality of life?

3 What will be the quality of life if i follow NSD ?

4 What is the quality of life with Anit-TNF?

5 Can we provide everything to our better half?

6 Will AS (just AS in mind) cause any problem in consecption of children?

Thanks in advance for your frank opinions

#384498 03/25/10 11:56 PM
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life is so unpredictable. healthy people get married, someone gets sick. someone sick gets married, they find a treatment that helps them feel and function better. and other things besides health can strain a marriage, or a couple can go through hardships together and come through them stronger than before. i'd say if you both love one another and want to spend your lives together, go for it, we just can't predict what the future holds.

though others may be able to give you a better personal account of what their lives have been like being married with AS.

my husband and i both have chronic health issues, but i wouldn't for a second wind the clock back and change a thing, regarding the relationship that is. if i could ask for better health for both of us, that, i'd change in a second!



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
#384502 03/25/10 11:58 PM
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Manju,

The conception question made me chuckle. My husband has had AS since he was 18 year old. We have been married for 25 years. We have had eight full term babies and three miscarrages. The AS did not affect our fertility. Keep in mind that he was not on any meds except for Ibuprophen. I am not familiar with what you ar on.

You can have a good marriage with AS, but please do your wife the favor of taking every oportunity to tell her how you are feeling. Don't force her to guess. Some of us are not that good at it. There are times when the pain is real bad and the marriage kind of takes a back seat for a while until the pain subsides. She should know that it you are dealing with the pain and not excluding her from your life. Please, please please be open and honest with her. It will be the best gift you can give her.

Every person enters a marriage broken in one way or another. You happen to know your weakness. Your wife might not know hers for years, but we all have them.

Have thought about how you will feel if one of your kids has AS? Marty is dealing with that right now. It is not easy. But I figure if we know how to treat AS ,NSD, then if one of our kids do test positve, we will know what to do to lessen or stop any damage right away. Is your potential wife aware that AS has a genetic component?

In my opinion, the quality of life you have with your wife is determined more by how strong your relationship is, not by which conditions either one of you have. The quality of your emotional relationship is more important than the quality of the physical relationship.

I wish you and your future wife all the happiness that Heaven can lavish on you.

Peace,
Jeanne

jeanne #384522 03/26/10 01:51 AM
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hey buddy, get onto that horse and bring your other half home smile

Life is too hard, you need a companion. My wife and I have been going out for last 5 years, AS cropped up 2-3 years back. There were times when, quite seriously, I tried to get out of relationship... never wanted her to deal with advanced AS life, but she stood strong and really quite honestly she has carried me all this time. She has given me the energy to fight and on more crappy days given me strength to live thru it... and on close to death by pain days, just stood by my side...
My partner has severe anxiety problem, so we stand by eachother. help eachother. Life goes on smile enjoy some wine have some fun on the way as well.

Anti TNF has helped me heaps, but i have been lucky to catch it as soon as it climbed above 50-75 ESR. Got some damage but thats life.

About kids, all is good. Although there is a thought out there that some NSAIDs tend to make you feel otherwise. And the Sulphur based drugs can bring fertility down, but as soon as you go off those, you are back to normal.

#384691 03/26/10 11:04 PM
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Hello Manju

Firstly, you are not stupid at all. We are all cursed with having an incurable disease. Are you finding the NSD is having an effect on your pain and inflamation levels by the way?

Sorry, back to your questions...

1. I think that any two people who freely decide to get married should be able to.

2. No one can be sure of their quality of life in the future (that's why they slip the "in sickness and in health" line into marriage vows). Of course, knowing you have a chronic condition is different from the "possibility" of illness in the future, but as long as your partner is aware of your condition, then you both make a decision together. Life is uncertain.

3. The NSD is not a guarantee or cure (in my opinion) it is one option for dealing with AS and it's degree of success or failure varies with each and every person who tries it.

4. I don't know anything about TNF i'm afraid.

5. I'm not too sure what you meant with this question - but again, there are no guarantees in life - you can only do your best for the person you love in whatever way you are able.

6. I don't know about AS and conception... all sorts of factors can increase or decrease your chances of conception. I don't know what bearing (if any) AS has on this.

I think it is a miracle in life if you can find someone you love who loves you in return and you want to be together. Hold on to it if it comes your way - it might not along again.

There are always a million reasons why you shouldn't do something! Sometimes you have to just take a leap of faith!

Take care, Manju


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#384862 03/28/10 12:39 AM
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AS will not affect fertility in and of itself. However, some medications will. Sulfasalazine will cause temporary infertility in males.

#384917 03/28/10 09:40 AM
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Hi Manju,
I got married nearly 5 years ago when my AS was really flaring it hasnt affected my married life my wife accepts me and loves me for the person I am despite being bent over and looking like I've lost something and constantly looking for it. It's a good thing to do if you meet the right person who can accept you as you are. My wife never criticises anything about me and is very supportive of my pain and all the problems that go with it.Life is what you make it.

Kevin

#384955 03/28/10 05:05 PM
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Originally Posted By: manju

1 Do you think that one with AS should get married?

2 What will be the quality of life?

3 What will be the quality of life if i follow NSD ?

4 What is the quality of life with Anit-TNF?

5 Can we provide everything to our better half?

6 Will AS (just AS in mind) cause any problem in consecption of children?


1. I think that should be decided by you, but your A.S. should not stop you from taking control of your life and your life decisions.

2. Future can never be predicated. This just doesn't apply to people suffering from A.S. but to everyone in general. Life is in most part what you make of it, no matter what your situation is.

3. Many people (including myself)have had great success with NSD, I really believe that many others could have had success with this diet, only if they would have had tried harder to be as strict as possible about it. You shouldn't give up on it easily.

4. I don't have any experience with TNF-Alfa blockers, but I don't like the idea of compromising my immune system at all, so I would leave it as a last resort.

5. For the most part yes, I believe that love conquers everything.

6. No, as others mentioned earlier some drugs for A.S. sufferers will affect fertility but on a temporary basis.

Cheers
Alex

#385471 03/31/10 05:10 PM
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Hey Manju,

This is a tricky subject since there are serious issues to consider but ultimately love can still find you, even if you try to hide from it...maybe especially then.

As for your questions:

1. Yes, I think we should get married or find a mate or whatever you choose for your own life. Love is powerful medicine and no matter what, no matter how bad things get, love can make it better and we still have to live our lives.

2. Your QOL will be what you make of it. Many people live their lives with AS pretty much as they always did. For some, their lives can be completely turned upside down. Marriage or any loving relationship can be something that gives you strength, renews a will to live well, encourages us to reach out and challenge ourselves.

3 & 4. Efficacy of any particular treatment plan is touch and go, at best. There are no promises (no honest ones anyway) that any option will be useful. All we can do is try and hope for the best.

5. No. I certainly cannot provide everything for my wife. Even if I were healthy, I wouldn't be able to do that! I suspect the answer to this question depends upon how needy and demanding your spouse is...lol

Good luck with this one!

6. Although AS doesn't typically interfere with our abilities to procreate, it most certainly CAN. My wife and I struggled with trying to conceive but my sperm is messed up by the anti-bodies my body produces. It's a hard pill to swallow what with all the other problems caused by the AS but you accept it and move on - a child is one of the things I couldn't provide for my wife it seems.

In the end, I'm a big fan of marriage. Pieces of paper aside, gathering family and friends to make a public declaration of your love and life together is a beautiful thing. Having said that, people can and do live fulfilling lives without a long-term partner, it isn't like we cannot function on our own. To be honest, I've often thought that it might be easier all around if I weren't married though. Living with someone who is suffering from an "invisible disease" can be very difficult and the demands of a family can be overwhelming when you are in a lot of pain.

I suppose it depends on the marriage. When things are bad, marriage feels like a stone weight hung around your neck - a burden that takes on extra significance during times of pain; When times are good though, they are even better for having someone to share them with.

No matter what, love is a worthy goal to strive towards.

Chris

#385576 04/01/10 06:38 AM
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Originally Posted By: manju

In the early 2007 i had taken a X-ray which shows evertyhing normal but in Dec 2009 X-ray shows 3 of my lumbar and 2 of my Cervical vertibrates are fused.



Just found the question to my problem, I do have same experience with you. I get AS in 1997, but last x-ray is on Sept 2007. and the spine it still okay, no fusion except the bottom of the spine has damage a bit. But after i got treatment by chemo and steroid for 1 year in 2008, my flexibility is worse and there is more pain. I'm afraid to accept the truth doing x-ray and choose to just live the life by NSD. Might be there some case of fusion too in 2 years, but i still hope there is not (fingers crossed)

About the marriage, i say marriage is based on your decision not based on the AS, Let us control our life. And i think have one person we love and we can share also has children is one best medicine for AS.. I looking forward to find the other half of me and go marry too in the future

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Hi Manju

AS as it is has nothing to bother you with the marraige life.

The only problem lies in getting a good partner who can understand and take care of the conditions.

We never know if the person coming into our life will be willing to face the challenge and be supportive all the times as its not a short term problem

If you have a someone already to be your partner knowing each other well for quiet some time then its ok but if you are planning now then its always a risk as we never know whats for the offering

Fertility is not an issue with AS but the disease itseld is a problem of its symptoms

You know AS is genetical so i dont think one will be willing to get his kids into the same hell of pain which he has been facing( If you are hla b27 + then is the risk is even more )

So you are the one to judge better on this what you should be doing

I personally feel it all depends on luck how understanding and supportive your partner would be

Best of Luck


Take Care Kesav
kesav #386369 04/06/10 06:11 PM
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Thank you everyone for your frank opnions. I have a lot of pressure from my family & relatives to get married, all this while i had been pushing it but i think i need to take my time and decide based on who, what and opnions .....

Will get back soon on this .......... ;-)

#386588 04/07/10 11:52 PM
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My opinion: you will make a wonderful husband if you are...
caring, kind, loving, a good listener, respectful, and communicative and honest. Your future wife is out there, waiting for her true love. Don't let AS stand in your way.
Jan


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#386594 04/08/10 12:27 AM
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So manju, is your family trying to arrange a marriage for you or just encouraging you to find a wife and settle down?

My advice is to take your time. DO NOT rush into anything for any reason. As much as it is true that a loving, supportive partner can be a great benefit in your life (and you in theirs as well of course) it is just as true, if not more so, that a difficult relationship WILL make your life a living hell.

I'm a romantic and believe in love. I hope I always will.

Personally, I reject the notion of "soulmates" since it tends to give people a convenient way out of relationships when the going gets tough. Instead of rolling up their sleeves to put in the hard work required for a long-lasting marriage, they simply give up and hope that their true soulmate is out there somewhere.

Every couple has fights and disagreements. It isn't possible for two human beings to agree on everything - even identical twins disagree with each other sometimes. It's how you choose to work through these difficulties that makes all the difference in the world.

I wish you all the best and hope you find the love you so richly deserve. Having someone to love makes you a better person in my opinion. I feel that this is true for me anyway.

Chris

#386995 04/09/10 07:47 PM
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Manju, both my future husband and I have a Spondyloarthropathy. I have AS, he has Psoriatic Arthritis. Total coincidence, honest.

Anyway, a happy marriage is not about one's health, wealth or anything physical. It is about love and respect. Be honest with her about your pain, but don't expect her to take responsibility for it. Ask for help, but only when you need it. Love her. Cherish her. Make love to her. Remember the teachings of the Kamasutra are not just to do with sexual prowess, but with how to treat one another. A good marriage is one part dharma, one part artha and one part kama. I'm not Hindu, nor am I truly knowledgeable, but I do know that many of these teachings are wise. Except maybe, in our modern times, the chapter on Courtesans (because how many modern wives are willing to share wink).

As the gents have said, some medications will get in the way of you fathering children. So, make sure that you aren't on one of these when you try to conceive.

You are a thoughtful and kind person. Any woman would be lucky to have you in her life.

Hugs,


Kat

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"Strictly Ballroom"

Inanna #387213 04/10/10 03:58 PM
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Hi,
I am surprised to note your quotes about Hinduism. How did you came across?

Regards,

JAY

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Here's my honest response as someone who is single at 34 (almost 35).

1 Do you think that one with AS should get married?
I've honestly felt that it would be unfair to a healthy person. I do not know what the extent of my illness is...if I will end up on disability eventually. I also can't imagine someone putting up with all my bizarro (sometimes icky) problems.

2 What will be the quality of life?
It's a toss-up. So many of us have completely different symptoms and levels. It also depends how well you take care of yourself.

3 What will be the quality of life if i follow NSD ?
Greatly depends. NSD did NOT show measurable improvements for me despite following it carefully for 6 months.

4 What is the quality of life with Anti-TNF?
I'm in a flare this morning despite Humira, NSAIDs, and prednisone. It reduces problems, but doesn't end them.

5 Can we provide everything to our better half?
No. But then again, no one could provide EVERYTHING. smile

6 Will AS (just AS in mind) cause any problem in conception of children?
No, but as AS is genetic, we will pass on our genes and proclivity to the illness. I do think you can improve your chances with careful nutrition and building children up properly.

I hope this isn't discouraging, but I wanted to be honest. Last night, I sat next to two friends who have such an enviable marriage. I drove home pretty sad despite my resolutions not to grieve any longer about being alone. When I stopped by the dance studio to pick up something, two of the girls sitting on the steps blurted out, "Why hasn't some guy snapped you up yet?" At 35, ill, and tired, I said before thinking, "I'm SICK. I have a degenerative illness." It actually felt good to admit. Other people have no idea the sadness we carry daily.

As a follower of Christ, I've learned to pray my fears and tears. When I start feeling sad/lonely, I remember that I'm fully loved and accepted. I think people with AS have a special place in God's heart--I've seen that here. When I crumble, it's amazing how God has lavished his love on me. I also preach to myself daily that I have all I need. When I doubt this, God loves me enough to find ways to remind me. As for my future, he's told us not to worry. I will continue to leave the details to him and follow him wherever that leads. That's true happiness.

#389070 04/22/10 01:22 PM
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1 Do you think that one with AS should get married?

YES.My husband loves me and is wonderful and I have told him I am so sorry (we were married for 7 yrs before I got diagnosed,though) he said it is not my fault and not to be sorry,that he is lucky to have me.I think if the person knows up front and has spent plenty of time w/ you on good days and bad,and they are ok w/ it,go for it!

2 What will be the quality of life?
We have a pretty good one.I actually try to do plenty because I feel worse doing nothing.Like a lot of people w/ AS,it hurts more to sit.If I can just get myself going.OUCH!

3 What will be the quality of life if i follow NSD ?
I actually did strict NSD for 9 months (minus 2 or 3 wks out of the whole time)I had to stop it.My hubby got mad as my cholesterol was 333 and I kept losing weight for some reason.More later in the diet.Anyway I am LSD and antibiotics now but I cheated for a few days and yes,the quality of life was much better on NSD LOL

4 What is the quality of life with Anit-TNF?
I don't know.Hopefully I won't have to do these.

5 Can we provide everything to our better half?
I try to,I think I do.

6 Will AS (just AS in mind) cause any problem in consecption of children?
I am terrified of carrying a baby while pregnant and afterwards!I will though because I do want one in a few yrs.I think it depends on the person.My rheumy told me when I got diagnosed that having children will be just fine.


Off antibiotics and now exploring mindbody healing.
Lindyap #389072 04/22/10 01:27 PM
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LindyAP,
Don't you know you deserve love,too? When the time is right,God will send you someone if you want one.If someone loves you,really loves you,they will for good AND bad!I have to put up w/ my hubby's faults LOL.
Obviously,if your friends asked you that question,you are a nice,special,loveable person!You deserve to be happy!I hope I don't offend you.It just makes me sad to think people w/ AS think they don't deserve love.We do.God thinks we do!
Shauna


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To All Posting on this subject.
I am humbled by your questions and comments.
Love has everyting to do with it. the kind of love that cuases us to give our best and to desire for others to succeed!
Wow, I think I iwll use some of this in my sermon material!!

Lon

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lindy,

i agree with shauna!

every one of us has strengths and weaknesses,

and the "healthiest" people in the world can develop a health problem at any time,

you just know what you're challenge is,

hopefully you see on here all of the stories of couples and realize, our partners don't see illness when they see us, they see someone who loves them, someone who they love. heart

some met their spouse before their illness manifested itself, others well after, so, i do believe you will find someone to share your life with, if that is what you want, and i do believe whole heartedly, not only do you deserve love, but that you have so many special gifts to share, that other person would be lucky to have found you.



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Sue22 #389172 04/22/10 10:31 PM
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Thanks for the comments. It's always so wonderful to have the support of folks who go through the same problems/worries. One of my friends on Facebook has been struggling with the same question.

I think the Apostle Paul summed it up well when he said "Are you married? Do not seek a divorce. Are you unmarried? Do not look for a wife." Don't go looking/seeking/stressing after relationships. He goes on later to say that if someone develops an attachment to another, by all means get married. This is exactly how I think about AS and marriage. Don't go looking, but if an attachment and understanding develops after you have been completely open and honest, then it's not a bad thing. It was meant to be.

I think the ideal match might be someone else who goes through similar health struggles. But then again...I wonder if I could put up with hearing my own problems. wink

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Lon, I must say I am also humbled by these questions and responces. I have been married for 36 years and some of those questions, in addition to "what if's", still plague me today. Though I was not diagnosed back before I was married like many now a days. I can't immagine not having my 2 wonderful (grown now) children. How empty my life would have been without my husband and children.
Cindy


" That which does not kill me only makes me stronger"
#403185 07/16/10 05:39 PM
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I'm a little worried about this topic myself. My AS is really active and I'm engaged. He has to pick up some of my slack and I know it will only be more and more as I worsen.
Children just compound that worry.
a) How would I live with myself if I gave this disease to my baby?
b) Wouldn't it break me to even give birth?
c) How fair is it really to bring children into this life.


AS, anemia, tendonitis, enthesitis.
EmilyM #403196 07/16/10 06:31 PM
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Hello Emily

Your concerns are totally understandable, hon.

I just looked up passing AS onto your children on the web... and this seems to be a popular opinion...

"If someone with the genetic marker (HLA-B27) has a child,
there is a 50/50 chance they will pass it on to
their child; however, there is still only a small
risk of the child ever developing AS."

It seems that you pass on the predisposition to getting it rather than straight passing on the AS if you get what I mean?

I have had AS for over 10 years, I have 3 children and I keep a close eye on them (as I know others on this site do)... One consideration is, that if they do ever show any signs of AS I can get them checked out very quickly... getting a DX and the right treatment method is half the battle, I think.

Life is full of very tough decisions, alright hugss


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#403254 07/16/10 11:58 PM
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Originally Posted By: manju


1 Do you think that one with AS should get married?

2 What will be the quality of life?

3 What will be the quality of life if i follow NSD ?

4 What is the quality of life with Anit-TNF?

5 Can we provide everything to our better half?

6 Will AS (just AS in mind) cause any problem in consecption of children?

Hi, I only have experience/opinions on some of your questions.
1. Yes
2. It's different for everyone.
3. Probably better than it is now.
5. Nobody can provide everything for anyone else.
6. The predisposition for auto-immune diseases can be inherited. While I had no problem conceiving, I personally would have though long and hard about adopting rather than pass this on to my children ~ IF I had been diagnosed when I was young.


ANA+ RF+ Rh- HLAB27+
Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013
pulmonary edema w/ NSAIDS 2009

Movin' it so I don't lose it!

EricaK #403521 07/19/10 10:31 AM
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Emily, having gone through these stages of my life already and on the other side, my advice to you is, don't throw away your happiness because you have AS. You and your spouse to be need to be perfectly clear, open and honest about what is going on with your health and all concerns should be openly discussed. You hubby to be should be %100 involved with your medical appointments and understand everything so there is nothing he doesn't know before you get married. The decision for children is a personal one between the two of you, but your marriage must first start on a strong foundation. As I said earlier in this post, I can't immagine my life without my children, how empty is would be. I can understand your dilema though. I did not know I had AS until my children were already in their teens, though I had many signs since age 12, I chose to ignore them. I hope you find happiness, life only happens once.
Cindy


" That which does not kill me only makes me stronger"
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Many others on this board have gone through full pregnancies successfully (and several). Think about it this way - during pregnancy, there's info that your immune system will relax, hopefully creating less need for medication (hah...maybe have 18-20 kids?).

Also, nature/nurture. Since you know a child is predisposed to AS, you'd make sure to create the optimal diet - lots of vitamin D. Low grains, tons of veggies, quality high density meats.

I'd say let your husband read about AS, but then remember that no case is classic. Some folks go into remission - some get worse - some stay the same. There's really no way to know, but you can always do 100% to take care of yourself. smile

EmilyM #404964 07/27/10 07:01 PM
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Emily, the older I get the more I realize that we all bring baggage to a relationship. Those of us who live with AS may bring slightly different baggage, but so does anyone who's ever been through divorce, been abused, is depressed, has some other illness, grew up....

Basically, we all need our partners' understanding at some point. I know you feel like you'll be a burden or something, but really, you won't. Especially if he truly loves you for who you are. Your AS is merely a part of the whole that makes up you, Emily.

a) You'd live with yourself the same way all the other moms here do. Your baby will be the centre of your world and you'll love it no matter what.

b) Not necessarily. Some women find that pregnancy puts AS into a remission. Unfortunately, that doesn't hold true for all women. Regardless, there have been studies on pregnancy and AS and your doctors will help you make the decisions that are right for both you and the baby.

c) Well, now we're into philosophy. That's something you and hubby-to-be will have to decide. Really, for all its warts, this is not a bad world. There are good people and bad, good situations and bad. The values you instill in your child will make a difference to him/her and your descendents. It is through children that we have the opportunity to make a better world, by teaching them about life and responsibility, the environment and war, and love... most importantly, love.

Your fears are understandable, but please do not let fear determine your decisions. One of my favourite movies gave me this quotation: A life lived in fear is a life half lived. It is true. Live your life as fully and completely as you can. Make the decisions that will contribute to your longterm happiness, rather than a short term desire. And live in love.

Hugs,


Kat

A life lived in fear is a life half lived.
"Strictly Ballroom"

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1 Do you think that one with AS should get married? I have been married for 10 1/2 years and diagnosed with AS 9 years ago. My husband is VERY supportive and really helps to keep me going when I have bad flare ups or issues with depression. I don't know what I'd do without him.

2 What will be the quality of life? Each person makes his/her own quality of life. You live how you want...

3 What will be the quality of life if i follow NSD? No different than any other diet really. Just depends on how well you follow it. I just started it about 1 month ago and it's so easy now, I don't even think about it.

4 What is the quality of life with Anit-TNF? I currently take Humira and wasn't able to walk prior to the TNF due to the severity of my pain. I'm afraid to go off of it now since I haven't had that issue since I've been on them but I could probably do okay now with NSD, exercise and better knowledge on how certain things affect my life.

5 Can we provide everything to our better half? You can provide everything you are willing to give. I'm a newbie to AS (fully informed, AS that is) as well. let me know if you need someone to chat with. I would LOVE to have someone to find out new things with!!! :O)

6 Will AS (just AS in mind) cause any problem in consecption of children? I was diagnosed when my oldest son was 2 (he's now 10). We wanted another child and were told that we couldn't have one with all of the meds I was on. Being stubborn, I refused to believe the "no". I found another Rhuemy who suggested the TNF meds. Best thing I ever did!! My second pregnancy was so easy and nothing I was on effected the baby. He is now 4 and healthy as can be.

Life is what you make of it. I've decided that my life is going to be all about living and NOT my AS. I am NOT a condition, I am who I've made myself to be. Live how you want to live and leave nothing to chance.

Hope this helps!!!

Heather


Heather

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Such inspiring replies!

Just recently got diagnosed with AS as well and i ask those questions to myself everyday. My gf has fibro and with my situation sometimes marriage can be questioning but i guess the idea here is to not let AS control your life.

Like someone mentioned above, health is such a fragile thing. People with no health problems can turn out to have very bad problems within a matter for few months. So you never know what life brings.

Put AS out of the equation and make that decision based on your heart just like everyone else. Do sit down and lay it all out with the Ms. tho.

In my case it's a little easier since she has fibromyelgia and she is very supportive of my situation and she even says we will do everything we can to live our life without these disorders stopping us from it.

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Alright...
When my partner and me did a civil union at the happiest time of our lives, we have to repeat the words about being together in happiness and sickness until we die..(at that time there was no sickness at all...)
At that moment saying these words I felt weird but i thought with the power of love everything is possible, even in the hard times we will still keep going on, together.
So we met, we love each other and you are expecting from me to say that we live happily ever after like a fairy tale...
I have to refer about the dark times in our relationship which probably is a common thing...
There are been times that I imagine of killing him or fill my suitcase and disappear forever far away from him...He must felt that or know about this...
Sometimes I felt he was responsible for the misery or the bad hard periods in our lives...
Now, with the clear mind , i can say i am not perfect, Sometimes i told him (as a joke) he can replace me with somebody else more clever, capable and healthy... like a new car...
There are responsibilities in a marriage , isn't it?
I will tell you when it hurts me and make feel guilty...
When I am lying at the sofa or bed , unable to move because of the pain and watch him COMING TIRED FROM WORK, CLEANING , COOKING , TRYING TO PAY ALL THE BILLS WITH HIS MONEY BECAUSE I AM NOT ABLE TO WORK ALL THE TIME AND PAID SO MUCH MONEY LIKE HE IS, watching him GETTING exhausted AND AT THE SAME TIME HE HAS TO TAKE CARE OF ME...
he is a human being ,,, he has his limits ,,, he is not a machine...
after we had our dinner , he left the dirty dishes at the sink.
I wished to have the power to get up and wash the dishes... but i couldn't . Who is supposed to do that?...
other times it was the opposite ...When he was very sick at times and i was healthy , my time was full and i was waiting the time to finish everything, take care of him and go to bed to have a rest. I would mind doing that , but sometimes i dint have the time or the strength to keep going, i reach my limits too.
Life is not fair, sucks...
But anyway...
In dark times we are thinking only the negative things. Sometimes way say nasty words to each other which is hard to forget...
But there always will be happy times or the big clouds will go away, then we realize how lucky we are having each other and how much we love each other... But life seems like a constant fight..
Do you think winning the lotto will solve everything?
What is life about?
being healthy and rich, having the perfect partner and family, living in the best country, having the best job, house and car?
Sounds unreal?
I am telling myself ... SHUT UP AND KEEP GOING!!!
Its just i don't want somebody else to suffer because of me..
But we both we prove that we love each other in our hard times, take care each other, and stick together...
I am wishing our life to be more simple and easier for us in the future,,,


the pain comes and goes but definitely has to do with what i eat or drink
Costas #432512 02/16/11 06:28 PM
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what each person brings to a relationship is largely intangible and really can't be quantitated, you certainly can't compare and keep score. we each do what we can. i think if you do what you can, show kindness and thoughtfulness to one another, make the other feel good about himself or herself, those are the things that matter. little random acts of kindness when we can. just showing one another that we care, that we want the other to be happy.

the chores will get done, they always do, we don't worry about them.

yes, life is tiring at times, but less so with someone by our side who cares about us, that we care about too. someone we can laugh with and just enjoy the company of.

i was reading the other day that one thing that may be important is in how we celebrate our successes, that its important to cheer on our spouse when they achieve something. i had to laugh at that, as we pretty much "celebrate" everything, big and small. nothing too small of an excuse to celebrate!



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
#432520 02/16/11 08:30 PM
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Hi Manju;
I'm still a newlywed (3 years) hrtballon but we have a pretty special situation here - my husband was very healthy, worked physical jobs long hours, went to school, fixed everything, cooked, etc and took wonderful care of me (the cripple) until, 2 months before our daughter was born, HE became very, very sick.

2.5 years later, he has no diagnosis and now I'M the strong one. That part sucks. And since then, we have literally had one thing after another go wrong, (just ask anyone here, I'm not kidding) from our ever-decreasing health (I'm now half-paralyzed and fighting the C word) to finances to family deaths (several) and estrangements to stupid appliances breaking, it has just been nonstop. And every single day I wish HE could be the strong one again, let me tell you. But I wouldn't trade him in for a triathlete's body, a thousand acre ranch and a million dollars. heart

I think, honestly, the ONLY thing that should affect your decision whether or not to marry is your love for that person. Period. If you and she are a Good Match (I don't mean just hot in bed, I don't mean Passionate, I mean you love each other with a stronger-than-steel, comfortable, every day kind of love) then you will still have a good marriage, despite illness, poverty, fire, flood, anything. hug You just have to make sure that you never let resentment build between you. Any time one of you feels a little tiny seed of resentment toward the other, (which happens a lot when one spouse is ill and can't bring home a big paycheck, or fix the roof, or get out of bed, and the other is required to take up the slack) then talk it out IMMEDIATELY. My poor niece almost got divorced her first year of marriage for exactly that reason, she's handicapped and her hubby is healthy and he resented her because all he saw was a pampered girl sitting at home all day while he busted his butt to bring home a paycheck.

1 Do you think that one with AS should get married?
ABSOLUTELY! If you find the right person. My dad (divorced 6 times) says "Marriage makes a good relationship better and a bad relationship worse." And so far I'd say he's right. And having a partner in life is just fabulous. EVEN if you're both sick.

2 What will be the quality of life?
Who freakin knows? When we got married, we THOUGHT it'd be pretty easy, that he'd continue working full time and i'd work part time and we'd live just fine in our cheap little house. We were living below our means at the time. Stuff changes. But I'm confident that hard work and faith and perseverance and clean living will SOMEDAY pay off for us and we will eventually be able to be self-sufficient. Our house is messy, we're broke as heck, and I'm half-paralyzed but somehow we are still happy. And our daughter is FANTASTIC.

3 What will be the quality of life if i follow NSD ?
It's worth a try! Maybe it'll work for you. It could improve things greatly.

4 What is the quality of life with Anit-TNF?
See #3. ALL treatments are worth looking into.

5 Can we provide everything to our better half?
Nope. But then, nobody can, really. What happens to healthy people when they get old? They get sick like us. And everybody has their own cross to bear. Some people are mentally ill, some are unemployable, some are ugly. The IMPORTANT thing is that you provide love and friendship and constant support. The other stuff is just stuff. But backrubs are very important. yes

6 Will AS (just AS in mind) cause any problem in consecption of children?
Not on the man's side, I don't think. It can sure make pregnancy less fun, but I really don't think it'd affect things from your angle.

There are lots of couples (I know several personally) with HORRIBLE health, on one or both sides, who have wonderful marriages and make each other happy every day. And then there are a ton (TON) of perfectly healthy couples who make each other miserable every day. Your illness cannot ruin a marriage unless you let it. I think maybe KAers seem to have a higher ratio of good marriages because people don't usually rush into a marriage with someone on a cane. I think maybe it takes a stronger person to marry one of us, but then we end up blessed with better marriages in the long run. I'm 26 and MOST of my healthy friends are already divorced, and they ALL envy me. Even though we're nearly homeless and i can't use my legs and my husband spends 20 hours in bed each day. lol.

Bottom line - don't let AS stop you from falling in love and building a life. We may be crippled, but we're not dead!

-Bridget




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Bridget, I loved reading your response!
xo


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Jan

naj #432873 02/20/11 03:54 AM
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bridget,

i second what jan said! heart



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Sue22 #432876 02/20/11 04:16 AM
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Me3

Great post and perspectives, Bridget! hugss


Dow
Anonymous #520615 03/28/22 05:50 AM
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Hello Dow!

Are you still dropping by these Forums? I had sent you an email but figure you had either not received it or it landed in the trash or you are not responding.

I hope someday to hear back from you and wish you much health.

Your friend,
- Angie Kalinovich -

PS. I hope you are still involved in the Film and Music industry.

Great post too, Bridget! Hope you drop in the Forums again.

Last edited by Magician; 03/28/22 05:53 AM. Reason: correction

- Carpal Tunnel in BOTH hands
- Depression (MDD) Major Depressive Disorder
- Pituitary Adenoma
- Scoliosis
- Spinal Arthritis with bone spurs on spine
- Multiple Scoliosis diagnosed
- Herniating spinal disc
- HLAB27+
- Final diagnosis: Mild lumbar spondylosis

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