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Old 06-02-2008, 04:49 PM   #1
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Ruining my Marriage

Has anyone else had their Fibro put a huge damper on their marriage?

My husband says he understands about Fibro, but when I'm walking around like a 90 year old lady.. he comes upstairs and asks "Whats for dinner.."? He doesn't seem to understand that I *NEED* 8 hours of sleep at night - and if I don't get it - I need to make up for that missed sleep somewhere. And if that sleep is ridiculed with leg spasms from heck, they don't really count because I'm not really sleeping - but trying in utter frustration to and it's not working

The stress of him and I not getting along has caused me to flare horribly and I'm in an endless cycle it seems. To top it off, he's talking about having another child -- and I don't know if I can be sleep deprived and not take my medications through the pregnancy/breastfeeding. The flares have gotten so bad, my doctor (today) prescribed me Lyrica - where before she stated I was managing my pain well with minimal intervention (using natural OTC supplments). It's beyond natural control now.

I just need to hear other stories from you all on how you made your loved ones understand the pain and tiredness isn't something just made up to fill a whim... or something you created to get what you want.

Thanks,
Cindy

 
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Old 06-03-2008, 04:03 AM   #2
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Re: Ruining my Marriage

Hi Cindy,

Yes Im feeling the strain BIG TIME. I AM pregnant 14weeks along with fibro.

I thought I was useless before! Its even worse now Im off all meds.

No matter how understanding our spouses are it does take its toll on them too.

Just sit down and talk to him again.........always keep the lines of communication open.

Im sure the others here will have much better advice, I just wanted to let you know your not alone.

Hope

 
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Old 06-03-2008, 09:08 AM   #3
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Re: Ruining my Marriage

Cindy - you are not alone! All of us have had to adjust with Fibro - whether it's about husbands, kids, co-workers, friends, and other family - we are all challenged day to day. Some days are good.... some not so good.

Reading some of the threads here will help you understand that you are not strange or alone. You have the right to a happy and productive life. Remember that lots of marriages have difficulties when both partners are healthy too. I hope your husband is open to learning as much as possible about Fibro because that will help him understand your experiences. Open communication is extremely important too. My husband is sitting here in the office with me and I asked him if he had some "sage" words of advice for a young husband faced with having a wife with Fibro. He says:

"Talk, talk, talk, he says. Listen, listen, and listen. And then if it gets too much at times and you get frustrated (you will!), take a few minutes, take a break and cool off, maybe go for a walk. And just love her!"
(am I lucky or what?)

Educating yourself will be important, too. You need to learn lots about Fibro so that you can help others understand. Reading books and research studies on the internet and in the library or magazines - and here of course - will help.

Your doc seems to have 'stepped up' with the script for Lyrica. She seems to be aware of the current research and treatment for fibro. It is a fairly new treatment, and some have found great success with it. There are lots of other modes of treatment/management as well.

Help your doc help you -- when you have an appointment - bring some questions, write them down, and I know it's hard, but speak clearly about what's happening with you and your family. There are specialists who deal with Fibro and other "arthritis" diseases - rheumatolgists - and if you and your doc think it is warranted, then you may consider a consult with a "rheumi" as well.

I'm hoping the Lyrica will kick in soon, and you find some relief from the pain and lack of sleep. Take naps/rests when you can. Balancing your day means taking a nap when you know you have a big day, so that you can be rested to enjoy the next activity. Once family members see that you feel/look/act better when you are rested, they will understand a bit more.

Whew, kind of long winded. We all wish you well. Please keep in touch here at the board - when you have time!

Wishing you peace and comfort,
Paddy

 
Old 06-03-2008, 09:10 AM   #4
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Re: Ruining my Marriage

Hope - I've been reading lots of posts lately about vitamins and how they are helping. Wondered if you are able to take supplements - like vitamin D
and B vitamins while pregnant? Just a thought..... Take care.
Paddy

 
Old 06-03-2008, 01:55 PM   #5
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Re: Ruining my Marriage

Cindy,

I am so sorry to hear of your physical and emotional suffering. Fibro is so hard for others to understand, especially since we typically don't exhibit outward evidence of our illness, like swelling, rashes, hair loss, bruising, etc. Sometimes a therapist can help our loved ones get a better perspective of just how much this illness impacts our ability to function on an every day level. I try to communicate as much as I can, but must admit that sometimes I get tired of listening to my own complaints and wonder how my friends and family can stand it.

I try to write, in a journal, about how I'm feeling. It really helps me vent a lot of my negative feelings so that I don't have to express them verbally to those around me, although at times it's impossible not to say something. I have had my husband read my journal and it's helped him to get a better understanding of where I'm at. But not everyone has the capacity to understand/empathize.

I sincerely hope your husband will come around and be more considerate of your illness and the physical limitations it imposes on your lives. Feel free to vent here anytime and know that we're all pulling for you.

((Hugs)) and ((Prayers))
TexMom

 
Old 06-03-2008, 05:30 PM   #6
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Re: Ruining my Marriage

Quote:
Originally Posted by Paddy55 View Post
Hope - I've been reading lots of posts lately about vitamins and how they are helping. Wondered if you are able to take supplements - like vitamin D
and B vitamins while pregnant? Just a thought..... Take care.
Paddy
I'm not sure, Id really like to take supplemental b6 for energy......I do take sublingual b12. Im outside whenever the sun is out.......it makes me feel better and I figure great way for vitamin D

I think Im going to ask the obgyn nurse. I need to get my thyroid #'s from her again.......one was fine, but the other one was on the LOW side of normal.

Hope

 
Old 06-03-2008, 06:59 PM   #7
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Re: Ruining my Marriage

Quote:
Originally Posted by ctheri View Post
Has anyone else had their Fibro put a huge damper on their marriage?

My husband says he understands about Fibro, but when I'm walking around like a 90 year old lady.. he comes upstairs and asks "Whats for dinner.."? He doesn't seem to understand that I *NEED* 8 hours of sleep at night - and if I don't get it - I need to make up for that missed sleep somewhere. And if that sleep is ridiculed with leg spasms from heck, they don't really count because I'm not really sleeping - but trying in utter frustration to and it's not working

The stress of him and I not getting along has caused me to flare horribly and I'm in an endless cycle it seems. To top it off, he's talking about having another child -- and I don't know if I can be sleep deprived and not take my medications through the pregnancy/breastfeeding. The flares have gotten so bad, my doctor (today) prescribed me Lyrica - where before she stated I was managing my pain well with minimal intervention (using natural OTC supplments). It's beyond natural control now.

I just need to hear other stories from you all on how you made your loved ones understand the pain and tiredness isn't something just made up to fill a whim... or something you created to get what you want.

Thanks,
Cindy

I too have tried to explain that I NEED sleep - that I'm not using it as an excuse to get out of anything (if you know what I mean), that I'm not lazy, I'm not faking it, etc. I know it's hard on him too since I'm not the person he married. I used to have so much energy.

This is such a horrible condition to have since for the most part you can't actually see anything wrong. We sure do feel it though, don't we? My husband tries to understand most of the time, but finally admitted that he didn't "get it."

I know communication is important, but I'm all talked out. I'm so tired of talking to him, trying to talk to friends (or people who I thought were my friends) and extremely tired of talking to doctors. What little comfort and support I find is on this board.

Good luck with the Lyrica and the husband!

 
Old 06-03-2008, 07:41 PM   #8
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Re: Ruining my Marriage

I'm sorry to hear of your troubles with your spouse. But, like all chronic illnesses, there is an adjustment period for both husband and wife. The next time you go to your doc, take your husband with you and open up the floor to frank discussion. Don't be intimidated, GO FOR IT! It sounds like your spouse may be in a place of denial, and hoping things will go along as usual if he pretends. This isn't fair to you, but "for better or for worse" sometimes is very difficult.

I remember going through all of that with my guy. I worked full time, had a kid with autism, and things were very bizarre. Getting dinner on the table was a major deal. I came home from work, fell asleep, got up and made dinner, fell asleep again, then woke up to go to bed. That was after taking a nap on my lunch hours and sometimes sneaking a nap in the supply room (I can't believe I was never caught). Meanwhile, he was parked in front of the TV after work having his 'down' time. Looking at it all in hidsight, I would have kicked his butt with a big boot long ago. I really feel for you, but I truly believe you have it in you to resolve this situation.

Blessings,
Kirstee

 
Old 06-03-2008, 10:06 PM   #9
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Re: Ruining my Marriage

What ever happened to "in sickness and in health?" I guess some spouses never expected the sickness part to happen.

That must be where the "worse" in "for better, for worse" comes in for the sick spouse; they get the worst from their non-supportive partner.

Sometimes taking the non-supportive spouse to the doctor is helpful, but if they're in denial, it seems as though nothing will get through to them. Communication from any source is just more "talk" to them.

I wish the best to any FM sufferer experiencing this emotional trauma in addition to their physical suffering. Make sure you seek out and find someone to vent to....even if it's here on the boards.

Blessings,
TexMom

 
Old 06-04-2008, 08:11 AM   #10
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Re: Ruining my Marriage

I feel I need to respond to this, as some of the people who have been on here know the struggles I have been through.

Having chronic pain has been part of my life only since September 07, if I have to really think about it I would say it started before that by having daily migraines the whole summer, and then September 4, my battle really started.

It was so bad, and I am scared that if I went off my medications, the horrendous pain, on the pain scale it would be an 11, off the chart pain, would come back, and even now it is at a 5, and can escalate to a 9 or 10. I could not open my mouth, ear, teeth,face, pain that spread into the rest of my body starting in the beginning of October. It went from my face, to my neck and shoulders, then my hands and feet, and then muscles, joints, and bones. All the while my husband did not understand, and in the beginning I had to hire a babysitter to come in the afternoon to watch the boys, wear them out at the park, so I could lay down, or get on the phone with doctors and surgeons to find help, and my husband was playing golf.

In the beginning, my husband and mother in law, accused me of having mood swings due to the medications, and the truth was I was sick, and it seemed my marriage went downhill too at the same time. It was the first time divorce had ever been seriously mentioned, and my husband said many times that once my jaw was fixed he would move on with divorce or then we would talk about it. I hated that, waiting for the possibility of divorce? It was no wonder I was sick and getting worse. My body pain was terrible, and I can barely walk in the morning. My husband took me to a dr appt. 2 hours away, and it was horrible, the surgeon did nothing for me, did not charge us, and told me, addiction can happen, so find other ways to treat pain, all the while my husband hearing that, and from then on called me an addict. On the way home he threw his wedding ring out the window on the interstate, and told me he was done with me. I was devastated. We came home, and somehow we patched it.

About 1 month later, I had to go to Boston to meet with another surgeon. I so wanted my husband there with me, but I was scared to have another repeat of our trip before. We only had 1 car at the time, and my husband never really offered to take me, and I could not handle the stress. I ended up taking a bus to Boston, my 16 year old cousin went with me, we spent the night, and I missed my husband so much. I called and called and he never picked up the phone. I was actually scared in Boston. His mother came in and took care of the boys, they are 2 and 4. I left on Sunday, and came back on Monday. I was so upset that my husband did not go with me. At the time I was having a hard time with body pain and stiffness. I was not diagnosed with fibro yet.

I could go on and on. I try to keep everything to myself. I try not to talk about my aches and pains, and deal with it on my own. I have learned that even doctors appts. it is easier if I have an appt. and get a babysitter, or my sister to help. It is hard to get to appts when you have a 2 and 4 year. With my husband, I am always a couple of minutes late from appts, or not out when I said I would be, or after the appt we need to get home so he can take a nap, because someone needs to work to take care of our family. The guilt is horrible. I hate guilt. I have so much of it. I feel guilty because I don't have as much energy, I have bad days where I cannot do anything, I can't keep up with my house, and it is not spotless or organized, I have prescriptions and copays, I have gained weight, etc. It is all too much. Sometimes I feel I am a failure, and I am a burden. I even think my husband is disgusted by me, he does not want me near him to hug or kiss him. I try my best to keep up on things, and take care of the boys. I so badly want my husband to love me, and tell me it is going to be ok. I truly believe that with my husbands support and love I can do better, to feel that special feeling of I am going to take care of you, and love you no matter what can mean so much. I do believe my husband feels those things, but just believes I should know that he loves me.

I am so sorry some of us are going through this. I never thought I would be here, in pain everyday, trying my best to keep up, but still rest, not move, to not be in pain. I am very sorry that I am sick.

I found out yesterday that my husband is taking his mother to a Red Sox game in a couple of weeks. One week before that appt in Boston I had, he took his mom to a red sox game in Boston. It was like a stab. I would so love to have a break, a break from being a mom for a day. I have been begging him to take me to dinner so I can have some time with him. It hurts. He and I used to go twice a year, and now he has taken his mom twice this year, he took a ice fishing 3 day trip with his mom in February, and he took his front desk manager to a game a month ago, she was stressed out and having some health problems, so he wanted to give her a break. I just want time with my husband. Normal time. It is no wonder I feel like a failure. I want the best for my husband and for him to be happy. He does not want to be with me, he wants to be with his mom. She is out of school it would be perfect, she could watch the boys, but it is not how it is going to work out. How do I handle it?

Guys, I know how you feel. I could write a book. I am so scared, and hurting. When I get upset, I get worse. I am trying and trying, and not getting anywhere. I wish I could be stronger and not let it all upset me. We have made it, it has been hard, it has 100% hurt my marriage. I am so sorry we have to go through this on top of not feeling good. I love my husband so much, and will go through anything and do whatever it takes for him.

I needed to add one thing, as I just talked to my husband, I mentioned how this weather, the rain and thunderstorms, are hurting me even more. They(meaning people without fibro) do not get it. He said, "everyone I talk to, including me, deal with this, being stiff in the morning." I stopped talking then. I started to feel like I have no reason to complain, everybody has this,right? I know my ears are burning from people saying why does she need pain medication, I know people who have tmj and they deal with it? But with me it is more than tmj, and then you add in fibro, and myofascial pain syndrome, and tendonitis of the wrist and face. I know as we get older our bodies hurt more, but with fibro, my body feels like one big bruise. How can I explain to my husband this, or tell him that I feel pain more than a person without fibro? If one of my boys accidently puts pressure on my arm or upper leg, the pain shoots, and I want to hit the roof. How do you all handle this?

Good luck to us all, and thank you for letting me get it out.

Kassandra

Last edited by gorgee; 06-04-2008 at 09:40 AM. Reason: needed to add one more thing

 
Old 06-04-2008, 09:40 AM   #11
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Re: Ruining my Marriage

Amen.
Hugs to all,
Wishing you peace and comfort,
Paddy

 
Old 06-04-2008, 11:17 AM   #12
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Re: Ruining my Marriage

Kass and Ctheri,

I wish I could just reach out across the virtual connection and give you a hug and a shoulder to cry on. You should NOT feel guilty. Who would wish this kind of suffering upon themselves? Nobody. Who would want to be so sick and weak that they cannot enjoy spending time with their children? Nobody. I know you love him, but your husband is selfish and cruel. You deserve better than that. The marriage vows you took involved promising to take care of each other in sickness and in health. He isn't holding up his end of the bargain, and on top of it, is trying (and succeeding) in making you feel guilty for being sick.

It is NOT your fault. What if you had cancer? Would that make me him more understanding, because it is a more "legitimate" illness? The fact that he is taking his mother out to a ball game, taking naps, etc., and making snide comments really demonstrates his lack of empathy for you.

I cannot support myself. I am on Social Security Disability and if I didn't have my husband earning a salary, I could not afford to get my medications, let alone live on my own. Fortunately for me, he is fairly supportive of me and wants me to focus on my health. We have our issues, though, and it has brought us to the brink of divorce as well. I thought I might have to sponge off of one of my girlfriends in order to survive. But we went to counseling and had a major breakthrough, which has saved our marriage and renewed our relationship. Things aren't perfect, but he has certainly made a turnaround that has made a big difference.

Kass, I am not saying these things to be mean or heartless. I am angry at your husband because you are suffering and he is not helping you. You deserve to be cared for and should not feel guilty about something over which you have no control. Would he go to a marriage counselor? I'm guessing not. If you could find a really compassionate doctor who understands your pain and would be willing to spell it out to your husband, do you think it would help?

How old are your boys? How do they react to you? I'm sure they know how much you love and care for them.

Kass, I will be praying for you, oh so hard, that your husband opens his heart and mind to you and becomes the man you deserve to have in your life. I also pray for a terrific doctor who offers you understanding and is able to help relieve your pain. I know what it feels like to be in that kind of relationship (I endured a hellish first marriage) and my heart really goes out to you. I know everyone on this board cares about you and we really want things to be better for you.

Vent any time you like, and remember that WE care.

Sending (((prayers)))and (((hugs)))-gentle ones
Tex

Last edited by TexMom85; 06-04-2008 at 11:20 AM. Reason: sp

 
Old 06-05-2008, 06:22 AM   #13
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Re: Ruining my Marriage

Kass -- I just wanted to send a mental hug (which I guarantee are pain free!) to you.

I started going to therapy (a shrink) session *for me* - because I was tired of living with guilt and anger. I suggest you do the same. You are *NOT* a failure!

Also, find a daycare for your children - someone you can rely on to watch your children as to go to your appointments. You need to get yourself better - emotionally above all else.

You need to talk about your aches and pains - and you need someone to understand it.... (I feel my husband tunes me out after he realizes he isn't going to get any sex that night because I obviously am making excuses not to be with him!? Thats a whole other story..) So.. write it down for yourself in a journal -- I find it's easier to type, since it puts the stress on both hands, instead of just one.. and to grip a pen isn't always easy. Do what you can for you -- and if you need to know someone will understand - I think this group here on this board is fantastic for that!

Communication is important (speaking from someone who has problems with it in her own marriage.. .). The other day, I printed an informational sheet on what Fibro was and how it affects people and put it where he would have time to read it.

I suggest you print out what you wrote to us. Your husband needs to know how you feel. He needs to know how much hes hurting you. If he doesn't care - then you need to care about yourself and make choices for you.

You need to do the best YOU can, and be proud of what you did. Each day, each step, can be a struggle... we all here know that! We're all proud of each other for what we can do each day.

Hang in there, and remember, you are a wonderful person who happens to have a yucky disease - and you can't help that.
-Cindy

 
Old 06-05-2008, 05:17 PM   #14
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Re: Ruining my Marriage

Thanks to all who wrote to us about our marriages and dealing with fibro. My boys are 2 and almost 5. They are great, and have gotten used to me having hard days and staying in. My oldest takes care of me, and he is so proud to say, "I will take care of you mom."

I do feel so guilty, sometimes my husband says things, that might be joking but they really hurt, like he has a wife who does not help financially(that was a decision we made over 5 years ago), a wife who can not keep up with the house, and a wife who is not 100% healthy. He said this morning that he would marry my sister, it was a joke, she is going through hard times with her husband, and she works hard, keeps a spotless house, and is healthly, but she smokes like chimney and drinks like a fish (I am saying that). The complete opposite of me. I adore my boys, and to be honest, my comfort, be pain-less, watching the boys have fun is much more important than me overdoing it by chasing them, cleaning up after them, and being in more pain. The house work will be here tomorrow.

Ctheri, we have to be stronger. I like the idea of printing out a flyer about fibro, and any other illnesses we might have, and giving it to our spouses for them to read. At one time I thought about having a family meeting, and then I could let everybody, who was second guessing me, know exactly what I was going through. I want my husband to love me and support me more than anybody in the world, they do not realize the power they have to make us feel better by the most simplest things. We need to talk here, and get it out, or it will be more toxic. We are not alone. I miss intimacy with my husband, we have 2 small boys, 2 and 4, and time alone is hard. My husband works 3 nights a week, and goes to church 2 nights, so it is hard to have time to ourselves. He is usually going to bed when we are getting up, and we are going to bed when he is getting up from a nap so he can go to work. I think about him all the time. I want to be there for him, it is just opposite schedules.

Lately my husband has not been kissing me goodbye, or hello, something we have been doing for nearly 10 years. I asked him, why, and he said, he could care less about them, well I do. I now have a complex, ( I am starting to cry) about myself, does he not love me anymore, do I smell, does he despise me, what is it? I sometimes feel I am going to burst. I now chase him out the door, and stop him for a kiss, and he only gives me his cheek, and acts like I am an inconvenience. What do I do? Stop running after him? I can not explain how my heart hurts, like ripping. Not only does my body hurt, my heart hurts too.

Hey, thanks again for helping us. We need to stick together, and be there for each and every one of us. We did not ask for this illness, we want to be healthy and jump up and go, but we can't right now. We are doing our best.

Love to all
Kassandra

 
Old 06-05-2008, 07:15 PM   #15
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Re: Ruining my Marriage

I had the same sleep problem as you. I couldn't sleep or I'd wake up 20 times a night. I could never get comfortable. I bought a 4 inch memory foam mattress pad at WalMartand I am sleeping so much better, I can't believe it. It also helped my morning stiffness be less severe. Believe me this pad works wonders for me and many others I've talked to.
As far as ruining your marriage, I've had ruined relationships. Unless someone has this rotten disease, no one can understand how we feel. I'd make plans to go to dinner or dates and come that day, if I was hurting bad, I'd have to cancel. Maybe I can't blame someone who feels normal for not wanting to put up with it. I'd love to see a Fibro dating site to pair couples with Fibro.

 
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