Autoimmune.........

[paigevz]

That's pretty much what I've done. Is put the control in his hands. It's his life. Me nagging him isn't going to help except to make our marriage suffer. So I listen to him, I give him the info I have, he makes his decisions. But yeah, it's pretty hard to see him say he's not going to go. Not that he's totally wrong...........there's not a lot they can do..........if he gets a lot worse he can go back to high dose steroids and THAT is no fun for anyone...........if he gets liver cancer, well, that's a whole new kettle of fish.

I don't know. I want him to live well as long as he can. But he has to decide what living well means to him. I'm too tired to make any sense tonight.

Thanks for the well wishes.

 

[debbi801]

That's pretty much what I've done. Is put the control in his hands. It's his life. Me nagging him isn't going to help except to make our marriage suffer. So I listen to him, I give him the info I have, he makes his decisions. But yeah, it's pretty hard to see him say he's not going to go. Not that he's totally wrong...........there's not a lot they can do..........if he gets a lot worse he can go back to high dose steroids and THAT is no fun for anyone...........if he gets liver cancer, well, that's a whole new kettle of fish.

I don't know. I want him to live well as long as he can. But he has to decide what living well means to him. I'm too tired to make any sense tonight.

Thanks for the well wishes.

I'm sorry. I know how difficult this is. You can't force him to take care of himself and it has got to be so frustrating sitting by watching him not follow doctor's orders, go for the right tests, etc. Add me to the list of ppl here that care about you and are praying for your family. How are your kids coping?

 

[Tigger&Belle]

I don't know. I want him to live well as long as he can. But he has to decide what living well means to him. I'm too tired to make any sense tonight.

Oh, honey... You know how to find me--never hesitate to call, PM or IM, P.

 

[L107ANGEL]

Oh, honey... You know how to find me--never hesitate to call, PM or IM, P.

Me too!

 

[hiwaygal]

P&PD for your family, your DH, and especially for you Paige.

 

[paigevz]

Okay, well, he seems to have come to grips with some things. He has a dr. appointment for week after next and is going to get his bloodwork before he goes. I'm fairly sure they'll make him do the sonogram when he shows up there. He told me today he's going to start his exercises when we get back from vacation.

He also seems very surprised that all our money is gone. I pointed out all the toys he's bought recently. He seemed surprised by both that and when I listed the things he wasn't doing that the dr. said to do.

I've begun sorting and packing up the nursery. Dh and I talked about his preferences (he wants cremation) and how to approach it with his family (that's basically for me to do when he's gone he said, oh joy.) Not that we plan for that to happen, we are still looking for more advancements, but it is a possible scenario, and he brought it up.

I have had way too many depressive episodes. I see my psychiatrist week after next. We are going to have to talk about another antidepressant. This one simply isn't working, but since we upped the dosage, I can't sleep again.

 

[L107ANGEL]

Aw Paige

 

[Grumpy's Wife]

Hang in there my friend.

 

[Tigger&Belle]

Paige, you already know my thoughts on this, however, I will say here that it's not right for him to expect you to handle stuff with his family if it does come to that. Anything should be spelled out in a will and he should express his wishes to hie family. He needs to be a man about this. Otherwise why should you honor his wishes? And hopefully this is all a moot point.

Love you, Paige.

 

[debbi801]

Okay, well, he seems to have come to grips with some things. He has a dr. appointment for week after next and is going to get his bloodwork before he goes. I'm fairly sure they'll make him do the sonogram when he shows up there. He told me today he's going to start his exercises when we get back from vacation.

He also seems very surprised that all our money is gone. I pointed out all the toys he's bought recently. He seemed surprised by both that and when I listed the things he wasn't doing that the dr. said to do.

I've begun sorting and packing up the nursery. Dh and I talked about his preferences (he wants cremation) and how to approach it with his family (that's basically for me to do when he's gone he said, oh joy.) Not that we plan for that to happen, we are still looking for more advancements, but it is a possible scenario, and he brought it up.

I have had way too many depressive episodes. I see my psychiatrist week after next. We are going to have to talk about another antidepressant. This one simply isn't working, but since we upped the dosage, I can't sleep again.

Prayers going out to your husband and you. Please, please take care of yourself. You won't be any good to anyone if you don't take care of you.

Paige, you already know my thoughts on this, however, I will say here that it's not right for him to expect you to handle stuff with his family if it does come to that. Anything should be spelled out in a will and he should express his wishes to hie family. He needs to be a man about this. Otherwise why should you honor his wishes? And hopefully this is all a moot point.

Love you, Paige.

I agree with T&B on this one. It has got to come from him. He needs all this spelled out. Otherwise, if his family is against his wishes, you're going to have more stress on your hands. Odds are, there will be stress anyway, but it will be easier if he voices his wishes to everyone now. (This is what my father has done. While my brothers and mom don't agree with what he wants done (I'm more accepting of it, although I think it odd), they can't argue about it since it is all spelled out in black and white and has been voiced to all of us.)

 

[paigevz]

Well. He went to his dr. appointment. He did not only bring home the results of his last blood test like I asked, but they printed his whole history of blood tests from the first one until now with all his numbers and his med changes. They told him the numbers looked good, but he'll be taking the Imuran the rest of his life (I knew that, but I guess he didn't). They had forgotten to do the cholesterol since they'd put him on his cholesterol meds, so he went for another bloodtest yesterday morning.

I picked up a good cancer insurance addendum that kicks in April 1st for the both of us, so he was given permission to refuse the sonogram until April. The main reason for those is to check for cancer. He was very happy as it really does hurt quite a bit, they jam it up under his ribs hard and comes home bruised and then it costs us 500 a pop with insurance. So they want another in August. They made the August appointment and he calls back for an April one.

I've had some issues with my mom. She does not understand why I'm having difficulties. I should be strong for him. I should be holding the family together. Well, I am. But, when I'm alone, when they're not here or in bed or I'm at work.........then I have a hard time. She keeps saying I should be happy for the time we have now while he's still mostly asymptomatic. I don't really feel as if I'm in charge of when I'm happy and when I'm not. I have depression, and it does what it wants. I've tried to explain to her that it's not that I am not happy with our lives now, it's the dreams we are losing and are in danger of losing.........we've lost the dream of another child (we simply don't feel financially we can do it with the dr. bills or emotionally with all else going on), and our dream of international adoption that we've had from day one of our marriage, even before then (they'll never approve it with his illness). We're in danger of losing the dream of growing old together. We're in danger of losing the dream of seeing our children through to adulthood together. We're in danger of losing so many minor things that we had counted on.

So, yes, that could happen to anyone at anytime. There are never any guarantees. Some of that we may not lose. But we didn't question it before. Now it's in question.

Basically, she doesn't get me and I don't get her. I include this because for those who read through here and are going through anything, it might help to know, relationships can change so quickly. You just have to change the way you deal with people and move on.

It makes my supportive friends that much more precious. You all know who you are.

 

[Tigger&Belle]

Love ya, Paige.

 

[hiwaygal]

Paige...

 

[L107ANGEL]

We love ya Paige!

 

[Mackey Mouse]

Hugs Paige..

I sometimes wonder why people do not get it. It is sometimes just hard enough to get up and get dressed, let alone your DH going to work each day, God Bless him, if you refuse invitations, they should just understand..

I will never get it. Lately, I have been pulling away, the more you pressure us to do what you want us to do, the less I think you are my friends...

We are here for you Paige.. hugs again.

 

[Grumpy's Wife]

Oh Paige. You know, until someone walks in your shoes they have no idea how they would react in your situation. You are doing the best that you can. I'm proud of you.

 

[bigmerle1966]

 

[minkydog]

I've had some issues with my mom. She does not understand why I'm having difficulties. I should be strong for him. I should be holding the family together. Well, I am. But, when I'm alone, when they're not here or in bed or I'm at work.........then I have a hard time. She keeps saying I should be happy for the time we have now while he's still mostly asymptomatic. I don't really feel as if I'm in charge of when I'm happy and when I'm not. I have depression, and it does what it wants. I've tried to explain to her that it's not that I am not happy with our lives now, it's the dreams we are losing and are in danger of losing.........we've lost the dream of another child (we simply don't feel financially we can do it with the dr. bills or emotionally with all else going on), and our dream of international adoption that we've had from day one of our marriage, even before then (they'll never approve it with his illness). We're in danger of losing the dream of growing old together. We're in danger of losing the dream of seeing our children through to adulthood together. We're in danger of losing so many minor things that we had counted on.

So, yes, that could happen to anyone at anytime. There are never any guarantees. Some of that we may not lose. But we didn't question it before. Now it's in question.

Basically, she doesn't get me and I don't get her. I include this because for those who read through here and are going through anything, it might help to know, relationships can change so quickly. You just have to change the way you deal with people and move on.

It makes my supportive friends that much more precious. You all know who you are.

Thankfully, I have not had those issues with my mother, but we're having them with DH's mother. DH recently was let go by his company of 20yrs. He just could not do the work anymore, so he's on disability now(at 50!) Needless to say, it is a difficult time for him. His mother told him he was too young to "just lay around" and he "needs to find a job right away." She doesn't understand how sick he is. Rather than worry her (she is 88 and in poor health) he just sucks it up and lets his mother think he's a lazy bum. DH's sister has never had any kind of serious illness and she is constantly giving him advice about how to beat his way back to health: chiropractic, flax seed oil, soy milk, etc. While all those things have their place, they won't make one iota of difference in the scar tissue which is consuming his lungs and her attitude maddens me I know she thinks she's helping...

I understand what you mean about lost dreams. It's a huge loss when you have to face your own (or you husband's) mortality at a young age. All those things you wanted to accomplish together now might or might not ever happen. It's hard to live in that holding pattern. It's extremely hard for friends and family to understand because their lives go on while yours is static. They can't comprehend the endless rounds of drugs, doctors, tests, hospitalizations. In my DH's case, he looks healthy to the untrained eye. His face is ruddy and filled out from prednisone and he looks rested from the 3 naps he takes every day. Friends and family look at him and assume things are fine, all better now.

I don't know if you are taking an anti-depressant, but you might want to think about it. I've been on Lexapro for years but recently switched to another drug to treat chronic pain. I didn't even realize how depressed I had been until the depression lifted! The lack of depression has allowed me the energy to clean the house, see a movie, cook dinner, plan recreation, attend PT/ doctor appts, AND work part-time.

Here's a hug for you. If I lived nearby I'd bring you a coke and some brownies. Keep your head up.

 

[paigevz]

Hiya Minkydog. Yeah, I take Celexa, but not sure if it's being as effective as it should be. It has helped though, but I am still having many depressive episodes.........might need to try another med.

My dh looks healthy too, and still works, though it's getting harder for him. People don't get it at all. We just get more and more isolated.

 

[paigevz]

Okay, well, update.

We went on a fabulous vacation and I met a lot of my friends.

Dh seemed much less fatigued before and during the vacation, and I had noticed a decrease in the muscle cramps, but I thought a little waxing and waning or my imagination, didn't want to read too much into it.

Well, the dr. tracked us down in DC, which scared the bejeezus out of us. Dh's levels looked great. So the dr. wants him off the urso entirely now. BTW, dh was supposed to have been taking 5 a day and couldn't remember the 5th so had been taking 4. So when they'd cut him to 4, he'd gone to 3. So the dr. had thought he'd gone from 5 to 4 when actually he'd gone from 4 to 3.........yeah, I didn't know either.........is your head spinning yet, mine was.

Anyway, there seems to be no inflammation at the moment so no more ongoing damage, so no need for the urso. They will keep him on Imuran forever. They did tell us because of the level of cirrhosis he is at they will never declare him in remission because he cannot afford a severe relapse. Bit disappointing there.

He will still have to do the NASH diet/exercise. He will still have to have his blood workups and if the levels change the meds will change. He will still be checked for liver cancer on ultrasound regularly, but now every 6 months instead of every 3.

Such is the nature of autoimmune. So this is happy, happy news and yet I am angry. I won't go into all of it, but basically this thing controls us and holds us captive. I wait for the other shoe to drop. I do not like relinquishing control to this whatever-it-is. I do not trust this eye of the storm. Please don't lecture or flame me, I just can't take it. I have some pretty big guilt for not being able to enjoy this.