Hi Nym,
No prednisone anymore. Last time she took it her white bloodcell count came back dangerously low. They have also backed off on her methotrexate as a result. Not a good combo for her.
JD
nym said:
Also - I'm wondering what meds she's on. If she's on prednisone, that could make all the difference. I get ANGRY when I'm on prednisone because of the med- it's not something I can control.
JD,
After reading everything you have written, I wish you were available. I am single because I had a husband who was totally selfish and I have unfortunately decided that all men are like him. So I don't even try. Now with PsA and possibly fibro, I think of myself as "broken" and so I will not even try. Could you imagine how hard it would be for someone that might be attracted to me?
You are an exceptional person since you do think about your partner and are concerned with how to relate to her in various aspects of your lives. Have you discussed this with your wife? I hope she knows that you care this much for her.
You make me hopeful that If I ever work on myself and decide to allow myself to be happy in a relationship that I will be able to find someone as kind and giving as you.
Pat yourself on the back. You have earned it.
MartaR
Don't sell yourself short. It may not be the best analogy in the world, but have you ever noticed there are far fewer attractive folk in the world than attractive. People are attracted to others for lots of reasons than appearances. (even men) A disease is not what causes people to be broken, their reaction to it can. Once a person totally accepts what they have, then they can start fix the "broken" The old phrase its not whether you win or lose, but how you play the game is utter nonsense. its only used by "losers" But in dealing with disease more apt is "Either you fight or you don't" You are guaranteed winner if you fight the disease. (If you fight anything else you will prolly lose) People are attracted to winners
MartaR said:
........ I think of myself as "broken" and so I will not even try. Could you imagine how hard it would be for someone that might be attracted to me?............
God I love you Lamb. I think you must remind me of myself.....
I think there may be an age thing kicking in here. Although I follow "What Kate Wore" with rapt attention in truth I am Carole's age. For those not up on the royals...I am over many hills.
My husband and I married at 50. We had both been married before with very sad results. At 40 I divorced a man I discovered was gay and raised my son alone for 10 years. I had been the bread earner and everything became much easier once it was just my son and I.
I met my present husband while searching for a house in a school district I wanted my son to stay in. I was driving him 2 hours a day and working full time so I really needed to find something to rent or buy. We dated for a year and bought a house together and moved our sons in. I told him I needed to see if it would work for all of us that my son was my priority and he respected that as he felt the same though his son was getting ready to leave the nest being 8 years older than mine. He proposed one year later and we married the following July. Four months later, 45 days into his deployment his son was killed in Iraq. Our marriage changed radically. We did get therapy and fought to keep it together and went through some horribly dark nights. But we made it. Battered but still standing. Then my diagnosis came. I don't know if stress brought it to a head or what. I can track symptoms all the way back to my childhood. I have tried all the biologics and now on Remicade I had a good three weeks but am back to baseline now which means I am walking on glass, can't but weight on one leg, can't stand up straight, have trouble combing my hair or brushing my teeth and my next infusion is not until 3/7/13. But my husband lights up when he sees me (not something you can fake) and tells me I am beautiful and brought me some blooming crocuses despite the fact very rarely is dinner waiting when he gets home. I am not sure when we last had sex (I would bet he doesn't either but measure in months not days). But we are intimate and tender every day. He is an old cop and I am an old nurse so we have seen people at their worst and consider our selves very lucky to find this late in life. I have said to him I wish we would have met a few decades earlier and he says, "I would have arrested you". But he has a twinkle in his eye and though we both know I was a hippie in my youth I never smoked pot in public so he wouldn't have had the chance!
I seriously think the difference is in age and priorities. Right now my husband and I are trying to accept my new normal and his loss. And for today that is enough.
Your husband and I have more in common than you might know . Of my nine kids (the adopted ones not the fostered) We have buried 3 of my sons wives and one of the sons (3 deployments the 4 the didn't go so well) Funny how priorities change isn't it??
You aren't kidding Lamb....
I am so sorry for your loss.
Hi JD,
My take on this is to just let her be, for the moment. This is obviously a highly emotive issue for both of you and if your wife has said that she doesn't think you know her any more, then to me, this is a big danger signal.
My husband was mentally and psychologically abusive and very controlling, but not obviously.....no one else but me and our 2 sons ever saw this. One of the worst things he ever did to me was to force me to reveal the sexual abuse I went through as a child, it was something that belonged to me, at the deepest most basic level, it was mine to know and didn't belong to him. He had no right to it and no right to force it from me..........he did it in a relentless caring way, pressure to reveal, pressure to share over many months until I caved. I was receiving counselling at the time and was off work because I was going through a mental breakdown........that was where, in my mind, my marriage ended, the final trust breached.
Please don't think I'm comparing you to him.......I'm not, but sometimes we can get to a state where we CANNOT share, we need to retreat to understand ourselves to wonder what is happening to us, to find out who we are, to work out if we even like ourselves let alone even begin to love ourselves, we grieve for our former selves, our former lives, the anger and deep sadness is all encompassing, often there is not room for anything else........we are in crisis, we need to be in our head on our own.
Recently I been in my own period of self reflection after more health issues beside PsA landed in my lap. This has been a test for my new man (coming up to 3 years) he amazed me........I warned him I was on shaky ground, but that was it I didn't know what else to say.........some evenings I don't think we spoke, but its wasn't bad silence.........he gave me space, he didn't ask me what was wrong, but told me he loved me and if I wanted to talk it was ok, if I didn't it was ok he just carried on as normal and was himself..........no pressure. I can't tell you how that made me feel........I could work through it on my own and know his support and love was there and I love him all the more for it..........I didn't have to ask, I didn't have to tell him what was needed he just followed his instinct and let me be. His answer when I asked him a couple of days ago how he knew what to do.........."you are such a strong person, you have survived so much, you know what's best for you. I wanted to take it from you but knew I couldn't begin to understand how to, so I wanted to just be there in the background for you, and love you with out pressure"
He's definitely a keeper.
I don't know if this helps at all JD, but just thought Id let you know how the inside of my mind works when I'm in crisis, I CAN'T let anyone in I have to do it myself, get there myself and yes that sometimes means sexually.
The thing is Louise, you and your guy are operating as one. I didn't explain it well to JD, but the more things you do separately the more quickly intimacy leaves the building. Certainly my wife and I don't do everything together (or even close) but she most certainly as does you guy own my disease too. It isn't a seperate thing directing our lives, each other, or something we fear. I KNOW when I hear the words "Get your Own Damn Coffee" I had better do so...... When she does the laundry she'll throw the socks to me to mate.Its not what you can't do, its what you can do and making sure each other does it. Learning to have each other back is what makes a relationship. I'm so glad you have that Louise. It saddens me to hear a relationship has taken a dump because of an event. Its simply not necessary and totally avoidable.
I too wish you the very best with your wife JD! She is blessed to have you still wanting her and in her corner through all of this! Every wife wants to feel attractive to her husband and from your post, you are still very much attracted to and in love with her! May you all prosper and get through this trying time and reclaim your romance!! Best wishes to you both! :-)
I am so glad you are back Louise, I have missed you. I had a feeling you were battling with foes so I have been sending prayers and (very gentle) hugs your way. Welcome home :-)
Thanks Michael, your care is very much appreciated :) <3<3<3 mousieheads my friend x
I'm glad too lamb, we both light up when we see each other, finding each other is a blessing for both of us :)
tntlamb said:
The thing is Louise, you and your guy are operating as one. I didn't explain it well to JD, but the more things you do separately the more quickly intimacy leaves the building. Certainly my wife and I don't do everything together (or even close) but she most certainly as does you guy own my disease too. It isn't a seperate thing directing our lives, each other, or something we fear. I KNOW when I hear the words "Get your Own Damn Coffee" I had better do so...... When she does the laundry she'll throw the socks to me to mate.Its not what you can't do, its what you can do and making sure each other does it. Learning to have each other back is what makes a relationship. I'm so glad you have that Louise. It saddens me to hear a relationship has taken a dump because of an event. Its simply not necessary and totally avoidable.
Hmm, interesting conversation here. Speaking for myself, I find this whole chain of conversation interesting. I married the love of my life 4 1/2 years ago. I was not dx with this lovely disease until 8 months ago, although in looking back I have had it for a long time. I am 57 and am in the best shape I have been in for at least 10 years - physically and mentaly. Do I feel like having sex all the time - NO - or at some point anytime, YES. Do I feel like being forced to talk about my illness all the time, NO. What I want is a husband who understands that I am not the woman he married, I am not supermom anymore, I am not superwife anymore, I am not super worker anymore, I am me. He gets it and that makes me love him so much more. Even though we have been married such a short amount of time, this man gets me. I do understand about being depressed about what this disease makes us, but I am chosing not to let it define me. Perhaps your wife should find someone to help her understand this. Perhaps you should also find something that helps her grow close to you again or you to her. I know others said this, but quit saying broken. I am not broken and neither is your wife, I know you say this is what she says but I'm calling BS on this. We have a disease, you could have one someday too, do you want to be called broken? I have discovered this disease is a "B", but you know what, we can't beat it, but we won't let it define us either.
Thanks MAT - definitely working towards understanding my wife better. I dont call my with broken, as I have said before here. I simply used it as a way to describe how she says she feels to see if others felt the same way. It's a pretty powerful word when put in context of what is going on. And I am certainly not forcing my wife to talk about anything. If I bring up a subject and she isn't interested, I let it go and move on. Eventually she will bring it up at a better time for her and we'll discuss without drama of saying things we may regret later had we discussed while the emotions were high. We have come to an understanding that talking about things that make us emotional is good, but at the right time. We are learning to communicate in a new way about a painful subject - more positive, compassionate and caring. Sounds simple...but not always.
Glad to see you have it all figured out and am happy for you. We are not quite there yet but working on it. It's getting better. Baby steps.
Thanks again for your thoughts.
JD
JD
MAT said:
Hmm, interesting conversation here. Speaking for myself, I find this whole chain of conversation interesting. I married the love of my life 4 1/2 years ago. I was not dx with this lovely disease until 8 months ago, although in looking back I have had it for a long time. I am 57 and am in the best shape I have been in for at least 10 years - physically and mentaly. Do I feel like having sex all the time - NO - or at some point anytime, YES. Do I feel like being forced to talk about my illness all the time, NO. What I want is a husband who understands that I am not the woman he married, I am not supermom anymore, I am not superwife anymore, I am not super worker anymore, I am me. He gets it and that makes me love him so much more. Even though we have been married such a short amount of time, this man gets me. I do understand about being depressed about what this disease makes us, but I am chosing not to let it define me. Perhaps your wife should find someone to help her understand this. Perhaps you should also find something that helps her grow close to you again or you to her. I know others said this, but quit saying broken. I am not broken and neither is your wife, I know you say this is what she says but I'm calling BS on this. We have a disease, you could have one someday too, do you want to be called broken? I have discovered this disease is a "B", but you know what, we can't beat it, but we won't let it define us either.
Thanks Louise, very helpful. I'm sorry to hear about your past experiences with your former husband but very happy to hear you have found a keeper! Yay! Things are getting better here. We have good days and bad, but the good are becoming far more frequent and the bad less so. I'm learning to let go, not be so insecure about the loss of some of the touchy feely stuff we used to have and take the little moments and cherish them. As tntlamb said, we adapt, we change. the last 6 months has been hard - we'll get through it.
Thanks again.
JD
Louise Hoy said:
Hi JD,
My take on this is to just let her be, for the moment. This is obviously a highly emotive issue for both of you and if your wife has said that she doesn't think you know her any more, then to me, this is a big danger signal.
My husband was mentally and psychologically abusive and very controlling, but not obviously.....no one else but me and our 2 sons ever saw this. One of the worst things he ever did to me was to force me to reveal the sexual abuse I went through as a child, it was something that belonged to me, at the deepest most basic level, it was mine to know and didn't belong to him. He had no right to it and no right to force it from me..........he did it in a relentless caring way, pressure to reveal, pressure to share over many months until I caved. I was receiving counselling at the time and was off work because I was going through a mental breakdown........that was where, in my mind, my marriage ended, the final trust breached.
Please don't think I'm comparing you to him.......I'm not, but sometimes we can get to a state where we CANNOT share, we need to retreat to understand ourselves to wonder what is happening to us, to find out who we are, to work out if we even like ourselves let alone even begin to love ourselves, we grieve for our former selves, our former lives, the anger and deep sadness is all encompassing, often there is not room for anything else........we are in crisis, we need to be in our head on our own.
Recently I been in my own period of self reflection after more health issues beside PsA landed in my lap. This has been a test for my new man (coming up to 3 years) he amazed me........I warned him I was on shaky ground, but that was it I didn't know what else to say.........some evenings I don't think we spoke, but its wasn't bad silence.........he gave me space, he didn't ask me what was wrong, but told me he loved me and if I wanted to talk it was ok, if I didn't it was ok he just carried on as normal and was himself..........no pressure. I can't tell you how that made me feel........I could work through it on my own and know his support and love was there and I love him all the more for it..........I didn't have to ask, I didn't have to tell him what was needed he just followed his instinct and let me be. His answer when I asked him a couple of days ago how he knew what to do.........."you are such a strong person, you have survived so much, you know what's best for you. I wanted to take it from you but knew I couldn't begin to understand how to, so I wanted to just be there in the background for you, and love you with out pressure"
He's definitely a keeper.
I don't know if this helps at all JD, but just thought Id let you know how the inside of my mind works when I'm in crisis, I CAN'T let anyone in I have to do it myself, get there myself and yes that sometimes means sexually.
Hi Sherry,
Yes - I am very much in love with my wife - more so today than the day we married. She says she feels the same so I have to believe we have what it takes to make it work.
Valentines is tomorrow - I had a stretched canvas frame designed with important dates on it. The day we met, our first date, our first kiss, the day we closed on our first home, the day we said "I Do". I also got her a box of chocolates from her favorite chocolate shop in Seattle ( we used to live there). I hoe it brings a smile to her beautiful face and a warmth to her heart. We dont usually give gifts to each other on Vday but this year is different.
Thanks for the kind words.
Best to you and yours.
JD
Sherry said:
I too wish you the very best with your wife JD! She is blessed to have you still wanting her and in her corner through all of this! Every wife wants to feel attractive to her husband and from your post, you are still very much attracted to and in love with her! May you all prosper and get through this trying time and reclaim your romance!! Best wishes to you both! :-)