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paigevz
11-11-2006, 03:56 PM
This board could not have come at a better time. My dh has autoimmune hepatitis and has had for 4 1/2 years. We have been hoping for remission, and we thought we had achieved it. But we got the latest biopsy results Thursday and he is not in remission. In fact, it seems the rate of cirrhosis has sped up. He's also developed another liver condition called NASH, which can be improved with diet and exercise, but further increases his possibility of liver cancer.

I have some wonderful friends on the CB, but it does sometimes seem like I'm bringing them down (even though they say I'm not) when I talk about it.

I was shocked he wasn't in remission, even the dr. thought he would be. And further shocked that the disease is progressing even faster and that he has a new one on top of it. Currently, his only symptoms are fatigue and very bad muscle spasms, for which he takes tonic water. Sometimes it helps, sometimes it doesn't.

I got very angry on Thursday, very sad Thursday night. I've been jumping between the two since. I am a teacher and had to teach Friday, so I kept it all in check. Some of my fabulous DIS friends emailed me through that day and it helped so much.

We have two young sons. The smallest is too young for anything besides "Daddy's sick". The older we had some trouble with when dh was first diagnosed and he was in counseling then. I explained to him last night just that "Dad's liver is still sick and we need to make some changes in how we eat"..........he's angry again.

I'm so happy to have this place.

Nala56
11-11-2006, 04:21 PM
I so feel your pain. My dh has autoimmune kidney disease, first diagnosed 9 years ago when our dd was 5. The first couple of years were really hard, he was so sick and was on high doses of prednisone, dealing with the side effects of that drug were terrible. He is now on an anti-rejection drug that has been working very well. He has had a couple of bad relapses, but over all our lives are pretty much back to normal.

We are so thankful for our wonderful and caring doctors. Good luck with your dh, hope he will be in remission soon.

snowball22
11-11-2006, 05:38 PM
PaigeVZ, did your dh get the autoimmune hepatitus from the Hep vaccine or did it just come on by itself?

paigevz
11-11-2006, 06:01 PM
By itself. As far as I knew, that was the only way to get it.................his body just started attacking his liver. His mother has it as well, so the docs are quite interested as they've never established a hereditary link. But she went into remission very quickly and still is.

Mackey Mouse
11-11-2006, 06:23 PM
Paige.. I am so glad you have a place that you can come and talk about your husband's illness...and it seems you are not alone in this disease.. I am sitting here kind of teary eyed thinking something good will come of this board as we will help each other through and will never feel that we are bringing anyone down, but rather bringing each up with hugs and knowledge..

Knowledge is power and if we can help each other with our experiences, that is awesome..

Hugs

minkydog
11-11-2006, 06:25 PM
I know those feelings. :grouphug: My DH has been battling an autoimmune disease which isn't usually too bad. Unfortunately, his body didn't read the book and the disease has invaded his lungs, brain, and heart and is working on his joints. Just about the time we think he's doing pretty well, something else happens :confused3 It's scary and maddening and totally NOT FAIR :furious:

Here's one more hug for you :grouphug:

paigevz
11-11-2006, 06:27 PM
Yes, totally NOT FAIR. :grouphug: back. Thanks.

We're just very disappointed he wasn't in remission, and now back to thinking about what will happen. How to plan for anything? His cirrhosis is now moderate. When might it get to the point that he's sicker again? He was SO sick when he finally got him diagnosed. They gave him 5-10 years before failure without remission. So it's been 4 1/2. I don't think anyone gets how scary it is. I mean, just how freakin' scary. Like when a truck moves into your lane on the freeway abruptly..............but all the time.

And it's so slow...........and people begin to think you should be used to it. The counselor at my school told me the last time he was having more symptoms, "Well, we knew it'd be up and down." Okay, but KNOWING and DEALING are two different things.

Just needing to vent a little. :blush:

minkydog
11-12-2006, 07:17 AM
Yes, totally NOT FAIR. :grouphug: back. Thanks.

We're just very disappointed he wasn't in remission, and now back to thinking about what will happen. How to plan for anything? His cirrhosis is now moderate. When might it get to the point that he's sicker again? He was SO sick when he finally got him diagnosed. They gave him 5-10 years before failure without remission. So it's been 4 1/2. I don't think anyone gets how scary it is. I mean, just how freakin' scary. Like when a truck moves into your lane on the freeway abruptly..............but all the time.

And it's so slow...........and people begin to think you should be used to it. The counselor at my school told me the last time he was having more symptoms, "Well, we knew it'd be up and down." Okay, but KNOWING and DEALING are two different things.
Just needing to vent a little. :blush:

I think this sums it up well. Other people don't really get how draining it is to live this way. We have had to have some of the most difficult conversations in the last 3yrs and at a much younger age than any of our friends. We have had to make our wills and power of attorneys "just in case". We've had to tell our then-17yo to "say what you need to say" because Dad may not live to see morning. Really rough stuff. And then dealing with the daily side effects of medication--3yrs of high dose steroids can be down right ugly.The situation is complicated by the fact that we also have a mentally handicapped child who needs care 24/7. My DH(the sick one) lives in fear that *I* will die and leave him alone.He absolutely cannot care for Christian alone for more than a couple days. It's too exhausting.

I find the mental fatigue to be one of the worst parts of dealing with a chronic illness, both for me and DH. It's the elephant in the room, always. When people ask, "How's he doin'?" they don't want the real run down. But if I say, "He's doing well" they think he's cured. "Doing well" just means he's not in the hospital this week. "Doing well" means he can breathe without oxygen and can throw the ball to our dog. DH lives with constant chest pain and shortness of breath. His lung numbers are less that half normal capacity. How do they think he'd feel? :confused3 But of course, they have no idea. I have to let it go.

Christine
11-12-2006, 08:03 AM
I think this sums it up well. Other people don't really get how draining it is to live this way. We have had to have some of the most difficult conversations in the last 3yrs and at a much younger age than any of our friends. We have had to make our wills and power of attorneys "just in case". We've had to tell our then-17yo to "say what you need to say" because Dad may not live to see morning. Really rough stuff. And then dealing with the daily side effects of medication--3yrs of high dose steroids can be down right ugly.The situation is complicated by the fact that we also have a mentally handicapped child who needs care 24/7. My DH(the sick one) lives in fear that *I* will die and leave him alone.He absolutely cannot care for Christian alone for more than a couple days. It's too exhausting.

I find the mental fatigue to be one of the worst parts of dealing with a chronic illness, both for me and DH. It's the elephant in the room, always. When people ask, "How's he doin'?" they don't want the real run down. But if I say, "He's doing well" they think he's cured. "Doing well" just means he's not in the hospital this week. "Doing well" means he can breathe without oxygen and can throw the ball to our dog. DH lives with constant chest pain and shortness of breath. His lung numbers are less that half normal capacity. How do they think he'd feel? :confused3 But of course, they have no idea. I have to let it go.

What, exactly, does your DH have?

paigevz
11-12-2006, 09:50 AM
But of course, they have no idea. I have to let it go.

Yes. And that is hard, to let it go. Mine was on 2 1/2 years of high dose steroids before he could go with just his Imuran and a synthetic bile. Some of the changes in his brain done by the chemical build-up before he was diagnosed, were permanent.

I can't get people to understand why we turn down invitations. The fatigue is constant. He works, every day. So that's all he does. Once he gets home, he's tired. He's in bed before 9, before the kids. He's too darn tired to go to the BBQ or the party. It just insulates us even more. And because he's working, they think he's okay, too. I think he still works because he needs to, to keep himself busy. He's the only one of his doctor's patients with this that does still work.........because when they go to schedule appointments, they're always surprised when he mentions checking work schedules.

Yours is much more advanced than mine. :grouphug: I know it must be so much worse than where we are right now.

princess sparkle p
11-12-2006, 10:18 AM
Paige -While I am not familiar with this lines, I am familiar with the stress long term family illness causes. I will keep you in my thoughts and prayers.
:grouphug: :grouphug: :grouphug: :grouphug: :grouphug:

paigevz
11-12-2006, 10:21 AM
Paige -While I am not familiar with this lines, I am familiar with the stress long term family illness causes. I will keep you in my thoughts and prayers.
:grouphug: :grouphug: :grouphug: :grouphug: :grouphug:

Gracias, mi amiga, y por tu familia de mi tambien. :grouphug:

Toot Sweet
11-12-2006, 10:37 AM
Paige, you are such an amazing person and friend. We are all here for you and so sorry you are going through such a difficult time. Please wish your DH the best from us. :grouphug:

L107ANGEL
11-12-2006, 10:44 AM
Paige, true friends want to be there for the tears as well as the laughs!! Please don't think you are bringing anyone down. That why many of us come here, to vent, laugh, and get to know each other. Your family is in our prayers :grouphug:

minkydog
11-12-2006, 11:12 AM
What, exactly, does your DH have?


He has sarcoidosis, an inflammatory autoimmune disease. It mostly affects the lungs and skin, but can invade any organ. Usually it goes away without treatment. Some people have to go on steroids for a few weeks, but then it goes away and that's it. In his case, the sarcoid has invaded several major organs and has caused fibrosis of the lungs( permanent scarring), killed off the main electrical impulse center in his heart(the SA node), and caused seizures from scarring in the brain. His case is very severe and will most likely lead to a shortened life. He uses oxygen at night and takes several rest periods each day. DH can work about 3 days a week, if he doesn't have an infection. His most recent hospitalization was in May, for pericarditis--the scarring has invaded the heart sac as well as the heart muscle. It has taken him about 5 months to recover from that. He takes 18 different meds several times a day. He has a pacemaker that paces pretty much all the time.

DH & I are realistic about the future, although he is not aware that his projected lifespan is about 8yrs. When he gets a little sick, it can become a crisis within a few hours so I have to monitor him closely--DH isn't always a good judge of when things have gone too far(he hates hospitals). We try to travel when he feels well. We can still camp in our little camper, we just take the oxygen with us. We go walk down by the lake sometimes. Sometimes we get respite for our DS11, which is a wonderful break for us all.

Some days life is a party and some days it's not. But we try. :goodvibes

minkydog
11-12-2006, 11:19 AM
Yes. And that is hard, to let it go. Mine was on 2 1/2 years of high dose steroids before he could go with just his Imuran and a synthetic bile. Some of the changes in his brain done by the chemical build-up before he was diagnosed, were permanent.

I can't get people to understand why we turn down invitations. The fatigue is constant. He works, every day. So that's all he does. Once he gets home, he's tired. He's in bed before 9, before the kids. He's too darn tired to go to the BBQ or the party. It just insulates us even more. And because he's working, they think he's okay, too. I think he still works because he needs to, to keep himself busy. He's the only one of his doctor's patients with this that does still work.........because when they go to schedule appointments, they're always surprised when he mentions checking work schedules.



I know, I know. We are in the same boat. DH has enough energy to do what he must, but there is nothing left over. He goes to work and comes home, takes a nap before he can even eat supper. He stopped going to the kids' evening events 3yrs ago because he was just too exhausted. In the evenings we just watch TV together. Like your husband, DH keeps working mostly for his own self-esteem. Without work he would feel like a slug. So friends who haven't really been in our shoes are puzzled & confused. :confused3 And who can blame them? He looks so healthy to the untrained eye.

paigevz
11-12-2006, 11:45 AM
He looks so healthy to the untrained eye.
Yes, that's what everyone says. But he LOOKS GREAT..............


Angel and Bonnie, you are both uncommonly fabulous friends. I am lucky to have you, and I hope you don't think less of me for needing this too. It's hard to stop a fun time and vent. :grouphug: :grouphug:

hiwaygal
11-13-2006, 07:42 AM
Paige...I'm so glad for this board and I'm so glad that you started this thread!!

I can understand that no matter how much your friends (me included!!!) love and care about you...sometimes you need to talk with someone who has been there, who REALLY understands everything. And, try as we might, if we haven't been through it, we can't really understand (but we do send :grouphug: and support whenever you need it).

It seems you have found at least one person who has been through something similar...and I hope you find more!

Just don't forget the Chatters! ;)

:grouphug: :grouphug: :grouphug: to you and your family!

blue_river
11-13-2006, 09:23 AM
Yes, that's what everyone says. But he LOOKS GREAT..............


Angel and Bonnie, you are both uncommonly fabulous friends. I am lucky to have you, and I hope you don't think less of me for needing this too. It's hard to stop a fun time and vent. :grouphug: :grouphug:

Hi Paige,

I just wanted to tell you how sorry I am to hear about your DH. I too was diagnosed with an autoimmune liver disease this year. After the shock and terror of the news, I made my way around the net and found a wonderful support group for people with autoimmune liver disease. It can be found at www.pbcers.org or you can just follow the link on my ribbon in my siggie.

There are about 3000 members who discuss many issues related to this disease, not to mention the support of friends who are dealing with the same problem.

If I can be of any help to you please do not hesitate to PM me.

Hugs.

paigevz
11-14-2006, 12:20 AM
Thank you! I will have to go see! :thumbsup2

kejoda
11-14-2006, 07:22 PM
Paige and Minkydog, I'm so sorry that both of your dh's have to go through this. My prayers for your families.

PrincessJasmine08
11-14-2006, 09:55 PM
Paige, we love you and there's no way you could bring us down. :grouphug: It is so great that you have a place here to talk about this. You, your husband, and your boys are in my prayers each and every night. We're here to help you cope.

Tigger&Belle
11-14-2006, 10:18 PM
Paige, you're not bringing any of your friends down. :hug: We're here ready to laugh with each other during the happy times, make jokes and be silly during the goofy times, be serious during the serious times, and provide support during the times that we need a strong shoulder to cry on.

I thought of you and your husband during Zach's Bar Mitzvah on Saturday when the prayer for anyone who is sick was said and I said a prayer for your husband. A person can never have too many people who care and too many loving arms around them, even if they are the virtual kind. :grouphug:

It is great that you have this forum, though!

paigevz
11-14-2006, 10:20 PM
PJ and R2..........you guys help so much. :grouphug:

Kejoda, thanks.

Minkydog, how are you today?

paigevz
11-14-2006, 10:32 PM
T&B, you must've posted while I was writing mine. You are a very kind and compassionate friend. I won't soon forget how much you encouraged me when I was first meeting the PMSers............I don't know where I'd be without that bunch and the Mad Chatters now. :grouphug:

Thanks to all my friends for understanding............it's easier to run away (and believe me, I've had plenty of friends do just that) when there's something this big and uncomfortable. You guys just came closer and let me lean.

You don't even have any clue what that means to me. :grouphug:

Shugardrawers
11-14-2006, 10:44 PM
Paige, hon, we are all here for you. If we only wanted fair weather friends that's what we'd be but we aren't. Every time I start to think no one could possibly know how I'm feeling or what I'm going through each day I think of you and a couple of other people here and I realize we get each other through. What we sow, so shall we reap. :grouphug:

paigevz
11-14-2006, 11:08 PM
Paige, hon, we are all here for you. If we only wanted fair weather friends that's what we'd be but we aren't. Every time I start to think no one could possibly know how I'm feeling or what I'm going through each day I think of you and a couple of other people here and I realize we get each other through. What we sow, so shall we reap. :grouphug:

Thanks so much friend. :grouphug: You've helped me so much already, but I do think I'll need you more. :blush:

minkydog
11-14-2006, 11:33 PM
Hi Paige,
I'm doing okay. I took my DH to IKEA today :banana: Oh man! What a great place. He was completely worn out by the time we left(even with a short rest period IN THE STORE :blush: ) but we had a great time. Tomorrow we go to the cardiologist(not expecting anything bad there) and the pulmonologist(kinda dreading that one.) We find out tomorrow if DH goes no methatrexate. also we have to discuss permanently stepping down from work. :guilty: I feel bad for DH. He does not want to have this converstion.

paigevz
11-14-2006, 11:36 PM
Hi Paige,
I'm doing okay. I took my DH to IKEA today :banana: Oh man! What a great place. He was completely worn out by the time we left(even with a short rest period IN THE STORE :blush: ) but we had a great time. Tomorrow we go to the cardiologist(not expecting anything bad there) and the pulmonologist(kinda dreading that one.) We find out tomorrow if DH goes no methatrexate. also we have to discuss permanently stepping down from work. :guilty: I feel bad for DH. He does not want to have this converstion.
Babe, *I* need a rest period in IKEA!!!

What does dh do for work?

minkydog
11-15-2006, 12:06 AM
He is an executive for a Fortune 500 company, works at a desk,lots of phone conferences. Unfortunately, as benign as all that sounds, the stress and the talking wear him out (he talks to lawyers all day long :crazy2:) He has about 3 more years until he makes full retirement so he's trying to hang on for those benefits.

blue_river
11-15-2006, 12:19 AM
Paige, we love you and there's no way you could bring us down. :grouphug: It is so great that you have a place here to talk about this. You, your husband, and your boys are in my prayers each and every night. We're here to help you cope.


PrincessJasmine!!! I saw your name and realized I recognized it from somewhere.... :goodvibes

Nice to see you here :wave2:

Tigger&Belle
11-15-2006, 08:07 AM
T&B, you must've posted while I was writing mine. You are a very kind and compassionate friend. I won't soon forget how much you encouraged me when I was first meeting the PMSers............I don't know where I'd be without that bunch and the Mad Chatters now. :grouphug:

Thanks to all my friends for understanding............it's easier to run away (and believe me, I've had plenty of friends do just that) when there's something this big and uncomfortable. You guys just came closer and let me lean.

You don't even have any clue what that means to me. :grouphug:

Paige, that's exactly right--we do come closer when someone is going through a tough time. I don't know what I'd have done the last few months without the PMSers with the high stress level in our house.

I actually think that practicing the compassion here on the DISboards has helped me not run away from these situations in real life.

minkydog
11-15-2006, 04:52 PM
Just checking in...hope ya'll are doing well on this very dreary day...:umbrella:

It has rained all day long, not particularly cold, but just relentless rain. Makes me want to go to bed and read all day. But, alas, today was "doctor day" for DH--visits to the cardiologist and pulmonologist. The cardiac doc basically gave him a clean bill of health--his heart has totally recovered, the pacemaker is doing it's job, now all he needs to do is keep taking his meds & maintain his low sodium diet(that's a lifetime thing).

The pulmonologist was cautiously optimistic--DHs lung capacity is at 40%, less than half-normal, but way up from 29% which is where it was a month ago. Kitt is having a lot of joint pain and losing bone mass due to the long-term steroid use.He's down to 10mg a day,but even that is fairly high and he can't seem to get any lower(frankly, I'm surprised he's that low--he's never been able to go that low in the last 3yrs.) The pulmo is putting him a trial of Methotrexate, a powerful chemo drug that is somewhat useful in sarcoid patients. :confused3 Either it will work or it won't, but it's worth a try since the steroids are causing a lot of bad stuff.

But at least he's not coughing up junk or sick this time. Hopefully, we can keep him healthy this winter and not have any drama. :thumbsup2 He's had his flu and pneumonia shots,and washes his hands like it's a religious experience, so I guess we've got him covered.

paigevz
11-15-2006, 10:48 PM
He is an executive for a Fortune 500 company, works at a desk,lots of phone conferences. Unfortunately, as benign as all that sounds, the stress and the talking wear him out (he talks to lawyers all day long :crazy2:) He has about 3 more years until he makes full retirement so he's trying to hang on for those benefits.

Mine works on phones too...........he sells computer components.........and it still wears him out.

Dh's dr. already mentioned Methotrexate...........and as I understand it, that is used when the other drugs aren't effective. So I wonder if he thinks the Imuran won't work anymore.........but he didn't put him back on steroids and he is stopping the ursodiol................. :confused3

Well, I'm glad to see he has increased lung function and a good heart, Minkydog.

We have the most trouble with the flu shot every year. I get it easily through work, and we usually get older DS and DH done at a health fair, but younger DS is hard to get it for. Now they've changed the age thing though, he's still young enough to fit in the high category, and now we can't find it for dh.............

paigevz
11-18-2006, 05:34 PM
I went to a conferenece with some freinds today. I went out to lunch after with them. My firend was concerned that I was depressed and bought me two rum drinks. I dran them both. Then I came home and sat with dh and I drank some tequila. This is the first time in over 10 years I have had more than a few sips of alcohol. I don't really think it was such a bad idea. I am relaxed and not anxious. Not that I'd want to do it evey day. But for a Saturday evening, not bad at all. He is watching football while I am here DISing and we are sitting together and laughing at my attempts to tyep properly. It's a nice evening.

blue_river
11-18-2006, 07:06 PM
I went to a conferenece with some freinds today. I went out to lunch after with them. My firend was concerned that I was depressed and bought me two rum drinks. I dran them both. Then I came home and sat with dh and I drank some tequila. This is the first time in over 10 years I have had more than a few sips of alcohol. I don't really think it was such a bad idea. I am relaxed and not anxious. Not that I'd want to do it evey day. But for a Saturday evening, not bad at all. He is watching football while I am here DISing and we are sitting together and laughing at my attempts to tyep properly. It's a nice evening.


Good for you Paige!!! Enjoy your relaxing evening :)

paigevz
11-23-2006, 08:45 PM
Hope everyone is having a great Thanksgiving! :grouphug:

Dh has not told his family of the new issues with his illness. And while I find it strange, I do feel very relaxed to not have to talk about it this weekend while at their house for Thanksgiving.

Only the newest SIL has asked questions.

I've been able to mostly just let go and have a good time. :)

paigevz
12-15-2006, 02:50 PM
I'm so sad. :sad2:

Tigger&Belle
12-15-2006, 02:58 PM
I'm so sad. :sad2:
:grouphug: I'm so sorry, sweetie. :guilty:

paigevz
01-04-2007, 10:26 AM
So updates are in order, I think. Besides I need to vent.

Dh is back on the ursodiol. He's been found to have high cholesterol from the NASH so he is on prevstatin as well. He's being watched closely for the development of diabetes and liver cancer. His dr. feels he would eventually develop both unless he goes into remission, which is highly unlikely by this time.

We have the personality changes now, as well as the cramps and fatigue. I also suspect he's in pain at times, though he will not admit to it. We cannot talk, he will not talk.

I don't know if I mentioned, but his diet is very restrictive now so he can lose weight to help the NASH........which will become a problem, the dr. says in 10 to 20 years. Low (read almost no) starch, fat, sugar and red meat. The nurse called to schedule another bloodtest to see if the prevstatin was lowering his cholesterol like it should, and she said, "I see we are looking at less than 2 years here, but just in case, you want to take care of the other." So that was not a nice thing to hear.

We took a vacation. We had some fun times, but he also slept over half the time we were there.

I am thinking about when he can't work, insurance, disability. I am thinking about daily life going on around him while he is too tired to join in. I am thinking about how to make my children have a normal childhood in the midst of all this.

I'm in therapy, I have antidepressants and valium.

And I am still scared to death.

paigevz
01-04-2007, 10:57 AM
Okay, so that was the rational update. Here's the irrational vent:

I want to blame somebody. I want somebody to be mad at. I want somebody to be at fault.

I want somebody to fix it. I want somebody to fix him. I want somebody to fix me. I want my life back.

This is what I grew up for? This is what I've done all this for? For this future?

It's wrong. It's not right. It's not supposed to be this way. I can't fix it right.

No one can fix it. Humpty Dumpty.

I shouldn't have trusted the happiness. I should have known it wouldn't last. I should have known better.

I hurt today.

Christine
01-04-2007, 11:29 AM
Paige,

I'm sorry you are feeling so bad. I'm not in the same position as you are but I am very familiar with the feelings that you are experiencing. It gets really hard sometimes and you wonder why *you* couldn't be the one where life went perfect.

I try not to have a "sour grapes" attitude myself, but it is difficult when you see how glowingly wonderful some people's lives are and they have never been even touched by an illness. Wouldn't wish it on ANYONE but it is hard when YOUR life is the one that gets the bad roll of the dice.

L107ANGEL
01-04-2007, 12:33 PM
Okay, so that was the rational update. Here's the irrational vent:

I want to blame somebody. I want somebody to be mad at. I want somebody to be at fault.

I want somebody to fix it. I want somebody to fix him. I want somebody to fix me. I want my life back.

This is what I grew up for? This is what I've done all this for? For this future?

It's wrong. It's not right. It's not supposed to be this way. I can't fix it right.

No one can fix it. Humpty Dumpty.

I shouldn't have trusted the happiness. I should have known it wouldn't last. I should have known better.

I hurt today.:hug: :hug:

Tigger&Belle
01-04-2007, 12:35 PM
Oh, Paige. :hug: It's not fair and I don't blame you one bit for what you are feeling. Know that I am here for you anytime. You have my number...please do not let yourself sink too low. And your vent was not irrational, P.

blue_river
01-04-2007, 01:13 PM
Paige...it has been some time since I joined you guys on the board and I wanted to check in here first.

I'm so sorry to hear what you are going through. As one who is experiencing the same sort of situation as your hubby, my advice to YOU is take it one step at a time. Try not to worry too much about the future and deal with it when the time comes. No one is to blame.

I can understand the stress you must be feeling and my heart goes out to you and your poor husband who is also dealing with this firsthand. Enjoy everyday as if it were your last and don't sweat the small stuff.

Hang in there. Be strong for your DH - he needs you now the most.

:hug: :hug: :hug:

paigevz
01-04-2007, 01:45 PM
HEIDI!!!!!!!!!!! Where you been? :hug:

I KNOW what you're saying, and I totally agree. I seem to be unable to stop thinking of the future though. I try, I do, and when we're together I do fine. But when we're apart, that's when it's hard. When we're at work, or when he's asleep and I'm up............it makes no sense, I know. I don't seem to be able to control it.

I am trying to be there for him.........he's not letting me, mostly.

Angel and T.........thanks. :grouphug:

Christine, I have no problem with others having nice lives. I would just like my husband well. And my friends as well.

Tigger&Belle
01-04-2007, 03:29 PM
Paige, one thing that you need to understand...it's important to be able to vent about what you are feeling. Your feelings are very normal and to be expected. :hug:

L107ANGEL
01-04-2007, 03:33 PM
Paige, one thing that you need to understand...it's important to be able to vent about what you are feeling. Your feelings are very normal and to be expected. :hug:

And we're always here for you!:grouphug:

hiwaygal
01-04-2007, 05:31 PM
Paige...I don't know what to say. Anything I can think of just sounds so inadequate.

I know you know that we are all here for you...I know it's not the same as someone right there in front of you but it feels the same to me.

As long as you know that the vents and the things you are feeling are totally normal...and know that you are NOT going crazy...well, I only hope that makes you feel even just a little better.

:grouphug: :grouphug: :grouphug: :grouphug:

disney kid at heart
01-05-2007, 10:08 PM
Okay, so that was the rational update. Here's the irrational vent:

I want to blame somebody. I want somebody to be mad at. I want somebody to be at fault.

I want somebody to fix it. I want somebody to fix him. I want somebody to fix me. I want my life back.

This is what I grew up for? This is what I've done all this for? For this future?

It's wrong. It's not right. It's not supposed to be this way. I can't fix it right.

No one can fix it. Humpty Dumpty.

I shouldn't have trusted the happiness. I should have known it wouldn't last. I should have known better.

I hurt today.

:grouphug: :grouphug: :grouphug: We are all here for you.

Grumpy's Wife
01-10-2007, 07:40 AM
Paige :grouphug: hugs to you my friend. Remember we are hear for you. Do you still have my cell phone number? Use it if you ever just need to talk. You are a very strong person. You will get through this and we all will help you as best as we can. :grouphug:

paigevz
01-10-2007, 08:19 AM
Paige, one thing that you need to understand...it's important to be able to vent about what you are feeling. Your feelings are very normal and to be expected. :hug:

Thanks. I feel whiny sometimes. :hug:

And we're always here for you!:grouphug:

I know, that keeps me sane. :hug:

know you know that we are all here for you...I know it's not the same as someone right there in front of you but it feels the same to me.

:grouphug: :grouphug: :grouphug: :grouphug:

It feels the same to me too. :hug:

:grouphug: :grouphug: :grouphug: We are all here for you.

Thanks so much.

Paige :grouphug: hugs to you my friend. Remember we are hear for you. Do you still have my cell phone number? Use it if you ever just need to talk. You are a very strong person. You will get through this and we all will help you as best as we can. :grouphug:

Thanks Tricia, I do have your number. :hug:

SillyMe
01-15-2007, 02:12 PM
Okay, so that was the rational update. Here's the irrational vent:

I want to blame somebody. I want somebody to be mad at. I want somebody to be at fault.

I want somebody to fix it. I want somebody to fix him. I want somebody to fix me. I want my life back.

This is what I grew up for? This is what I've done all this for? For this future?

It's wrong. It's not right. It's not supposed to be this way. I can't fix it right.

No one can fix it. Humpty Dumpty.

I shouldn't have trusted the happiness. I should have known it wouldn't last. I should have known better.

I hurt today.
:hug: :hug: :hug: I didn't know this place was here until now. What an awesome idea. Paige, don't ever worry about venting. That's what friends are for. I wish I had the time lately to hang out with you guys. I miss you all. I've been busy shopping for ruby red lipstick and momjeans.

CEDmom
01-22-2007, 08:58 PM
Paigey, I just found this thread. I just want you to know I love you when you're upset and I love you when you're happy :hug: .

paigevz
01-27-2007, 05:15 PM
Well, we have not been communicating very well, but dh told me today that he was called by a nurse asking for him to redo his bloodwork "right away". He told her he'd go this weekend, and she said "What if you don't go this weekend?"..........which is an odd question, it seems to me, but that's what he says she said. He told her he WOULD, and she said "make sure you get that done". He went this morning. He told me all this when he got home. Normally, when he goes to get bloodwork done, we all go, and lunch or shop afterwards. Things are changing around here.................

hiwaygal
01-27-2007, 08:33 PM
Well, we have not been communicating very well, but dh told me today that he was called by a nurse asking for him to redo his bloodwork "right away". He told her he'd go this weekend, and she said "What if you don't go this weekend?"..........which is an odd question, it seems to me, but that's what he says she said. He told her he WOULD, and she said "make sure you get that done". He went this morning. He told me all this when he got home. Normally, when he goes to get bloodwork done, we all go, and lunch or shop afterwards. Things are changing around here.................

Paige :hug:

Maybe he's trying to be strong for you...maybe he's trying to shield you a little to give your mind a break (I know, it's not working that way).

If you need to talk, let me know!

blue_river
01-29-2007, 09:50 AM
Paige, I can feel your frustration. Perhaps he is trying to hide things from you like hiwaygal mentioned and I'm sure it's just making things worse for you.

I'm not sure what more you can do other than try and get him to be more open with you which I know you've been doing. :confused3

Hopefully, he will come around and see that your support is the most important thing he needs. :hug:

paigevz
01-30-2007, 02:39 PM
Bloodwork looks GOOD! Cutting the ursodiol to 3 a day instead of 4. The cirrhosis is slowing........well, they can't tell for sure without biopsy, but the bloodwork seems to show that. :woohoo:

They didn't check the cholesterol though???? :confused3 They told him they wanted to see if the cholesterol meds were working, but the nurse today said they just wanted to make sure it wasn't knocking his other numbers out of whack.

They are going to call him back though, and I told him to have them fax all his numbers so we can get a total picture.

Tigger&Belle
01-30-2007, 03:01 PM
Paige, I know I told you this elsewhere, but I am so glad that you got some happy news! :woohoo: :cool1: :hug:

L107ANGEL
01-30-2007, 03:06 PM
THIS IS GREAT NEWS!!! :hug: :hug:

1Prince2Princesses
01-30-2007, 03:13 PM
Paige... thanks for sharing this with me. You can add me to your list of people who think you're great and will remember you and your family in our prayers. :)

hiwaygal
01-30-2007, 06:11 PM
Add me to the list of folks who is glad there is some good news!!! Your family certainly deserves it!!! I'm so happy for you all!

:cheer2: :cheer2: :cheer2:

paigevz
01-30-2007, 06:31 PM
:grouphug: Thanks guys. It's just a small change, very small..........overall he's still very sick...........but I am happy to see a slowdown! That was my biggest worry, that it was speeding up.

Toot Sweet
01-30-2007, 07:03 PM
Paige, I'm very happy you have a bit of good news!! You deserve it! I'm wishing you the best! :grouphug: :flower3:

bigmerle1966
01-30-2007, 07:41 PM
Good news Paigey!:hug:

Grumpy's Wife
01-31-2007, 06:50 AM
Paige remember I always tell you "baby steps" and this is one of those going in the right direction. Great news! I'm still praying for your family. :hug:

Tigger&Belle
01-31-2007, 07:07 AM
Paige, I know how worried you were when he went in for that blood test and I'm so glad that the results were not what you feared. Our minds can worry about the worst case scenerio--you know we both do the same thing. :hug:

paigevz
01-31-2007, 08:33 AM
Paige, I'm very happy you have a bit of good news!! You deserve it! I'm wishing you the best! :grouphug: :flower3:

Good news Paigey!:hug: Thank you, thank you, thank you very much. :thumbsup2

Paige remember I always tell you "baby steps" and this is one of those going in the right direction. Great news! I'm still praying for your family. :hug: I remember Tricia. :hug:

Paige, I know how worried you were when he went in for that blood test and I'm so glad that the results were not what you feared. Our minds can worry about the worst case scenerio--you know we both do the same thing. :hug:
Because we are two halves of the same person...........:rotfl:

paigevz
02-04-2007, 02:46 PM
I am a basketcase today. I sat in the bottom of the shower and cried for nearly an hour.........got sick.........water went cold.........I just stayed there. Sent dh and the boys to the superbowl party without me. Since dh came home sick from work on Friday (NEVER does that), I am not entirely sure if I got sick from the crying or a virus, so I didn't want to take the virus over there......they have a new baby. I haven't stopped crying for more than 15 minutes since. Cry, stare at the ceiling, cry some more, stare some more.

Don't ask me what's wrong, I don't know. Several small buttons of mine were pushed this am, but none of them enough for this. Maybe the baby thing. Dh and I had been going to have another, and I was to go to the ob the next week after his "remission that wasn't" appointment to get the fertility drug that worked for Thing 2, and we have since decided not to. This friend that is hostess of the superbowl party we were going to just had her third baby..........

Still, I thought I was getting over that, and I have two wonderful boys. Seems a silly reason to cry for an entire day when I've known about it for a few months now.

I'm extremely put out with myself for not being able to get my you-know-what together.

L107ANGEL
02-04-2007, 03:06 PM
Aww Paige!!! Why didn't you call me??? :hug: :hug:

willis37862
02-04-2007, 03:34 PM
I just have hugs for you sweetie. :hug: :hug: :hug: :hug:

Grumpy's Wife
02-04-2007, 07:07 PM
I'm sorry you're having a rough day Paige. :grouphug: I hope you're feeling a little better now. :flower3:

paigevz
02-15-2007, 09:41 AM
So dh has decided it isn't necessary for him to do his quarterly sonograms. He asked why should he double them? I said to look for liver cancer. He said but why would they need to look for it more often now? It's the Imuran he said that might cause that. I said no, hon, it's the two diseases, and now that you have both, your chances are much higher. So he said, what's the point of knowing about it? Early detection is key to treatment I told him. He told me (and I hadn't known) that they cost us 500 dollars each after the insurance pays their part, and he thinks they just arent' necessary.

I asked him, didn't you hear what the dr. said? He floored me when he responded that he hadn't heard a word that dr. had said. Not a word past no remission. And the dr. had kept asking him if he'd understood and he'd said yes. I'm his wife and I had thought he'd understood. This is why when I said NASH that time, he'd said "what's that?" and I'd said, "what you have"..............I had thought that was strange then, but he'd heard nothing.

Which made me all the more determined to go to his appointment tomorrow with him even though I'm out of sick days and it wouldmean docked pay. But he told me they switched it to next Thursday morning. He doesn't want to go in the morning he said, he wanted a Friday afternoon. Strange in itself, as he's always wanted early mornings so he could go back to work. So he told them no. They told him it would push his appointment back a month. So he told me he won't go now until March. He didn't go get his other bloodwork done anyway, he's going to refuse the sonogram and he says "what's the dr. going to tell me anyway?"

He's drinking beer on weekends and back to eating what he wants much of the time......things that are off his diet.

He does still take his meds. He's having nightmares. He IS talking to me now.

I need guidance here. This is all a bit confusing to me. On the one hand he's talking to me about it, on the other, he seems to be rejecting his treatments and diagnostics out of hand.

L107ANGEL
02-15-2007, 09:48 AM
Paige, I have no advice, just hugs for now:hug: :hug:

MUFFYCAT
02-15-2007, 10:15 AM
I'm so sorry Paige.
some hugs for you :grouphug: :grouphug:

Miss Jasmine
02-15-2007, 11:16 AM
Paige, it sounds like he is in denial. He may be talking about it, but he's rejecting a lot of the course of action. Is there any way he would consider talking to someone about this? He's scared, he has feelings he doesn't know what to do with, and I think a neutral third party would be beneficial to him (and to you and your family).

:hug: Paige, believe me, I know what your family is going through. Different diseases, but oh so many of the same things. :hug:

blue_river
02-15-2007, 11:26 AM
Paige - it could be denial but he may also just want a break from it all. Having to run to the doctors so often can get tiring in itself and wear you down. I'm glad to hear that he is talking with you though.

I'm glad you have so many wonderful friends here on the DIS who you can talk with and I'm one of them. Anytime you need to chat - ask me & I'll be there :grouphug:

Tigger&Belle
02-15-2007, 11:40 AM
Paige, I don't have advice, but do have :hug: and am always here to listen. I'm so sorry that you are dealing with this.

Grumpy's Wife
02-15-2007, 12:13 PM
Paige I'm so sorry you're going through this. :hug: I am glad to hear that he is opening up and talking with you now. That's a step in the right direction. I don't have any advice to share but I am still praying for both of you. :hug:

minkydog
02-15-2007, 10:46 PM
Oh paige, I just read your update:grouphug: I know you're worried sick. What he is doing is a very normal reaction to bad news. Even though he says he didn't hear a thing, he heard enough. I don't think he has permanently given up, but he is exerting some control over his life. My DH did a similar thing when he had a brain tumor 5 yrs ago--declined to have a biopsy or any treatment(after the doctor told him is looked inoperable on the MRI) and decided he would just wait and watch:eek: I, of course, was beside myself!

I hope your husband will come around as my DH did(eventually.) One thing I've learned is he has to work it out himself. He's hurting and you're hurting. This is a road you walk both together and alone. All you can do is continue to support him in his journey. If he decides to take a break from tests and treatment, well, that is his right even it it makes you feel crazy. This is his way of saying, "I"m still in charge of me."

Here's another :grouphug: cry all you want. Sometimes there are no words...

paigevz
02-16-2007, 12:41 AM
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
02-16-2007, 06:03 PM
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.

:hug: 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. :hug: How are your kids coping?

Tigger&Belle
02-16-2007, 06:12 PM
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... :hug: You know how to find me--never hesitate to call, PM or IM, P.

L107ANGEL
02-16-2007, 06:23 PM
Oh, honey... :hug: You know how to find me--never hesitate to call, PM or IM, P.

Me too! ::yes::

hiwaygal
02-16-2007, 06:26 PM
:hug: :hug: :hug:

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

paigevz
02-26-2007, 01:18 AM
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
02-26-2007, 05:38 AM
Aw Paige :hug: :hug:

Grumpy's Wife
02-26-2007, 06:29 AM
:flower3: Hang in there my friend. :hug:

Tigger&Belle
02-26-2007, 06:56 AM
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? :hug: And hopefully this is all a moot point.

Love you, Paige. :hug:

debbi801
02-27-2007, 05:49 PM
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.

:hug: 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.
:hug: :flower3:

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? :hug: And hopefully this is all a moot point.

Love you, Paige. :hug:

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
03-04-2007, 08:06 PM
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. ;) :grouphug:

Tigger&Belle
03-04-2007, 08:10 PM
Love ya, Paige. :hug:

hiwaygal
03-04-2007, 08:13 PM
Paige...:hug:

L107ANGEL
03-05-2007, 05:24 AM
We love ya Paige! :grouphug:

Mackey Mouse
03-05-2007, 06:20 AM
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
03-05-2007, 07:00 AM
Oh Paige. :grouphug: 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
03-05-2007, 12:18 PM
:hug:

minkydog
03-06-2007, 10:44 AM
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. ;) :grouphug:

:grouphug: 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." :worried: 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:furious: 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 :grouphug: for you. If I lived nearby I'd bring you a coke and some brownies. Keep your head up.:flower3:

paigevz
03-06-2007, 10:56 AM
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
03-19-2007, 10:36 AM
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.

Grumpy's Wife
03-19-2007, 10:49 AM
Paige I'm so glad you got some good news. :hug:

L107ANGEL
03-19-2007, 10:56 AM
YAY PAIGE!!!! :cheer2: :hug:

Tigger&Belle
03-19-2007, 11:02 AM
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.

Oh, sweetie! :hug: I really think it's perfectly normal to feel like the other shoe can drop at any moment. Very glad that you got some positive news. :hug:

minkydog
03-19-2007, 03:28 PM
:hug: Ahh, I don't understand it either, but I sure recognize the feelings. Sometimes you just want to get on with it, ya know? :confused3 Except you don't. Ack!

Glad you got some good news and you have this calm time. Now we'll pray for some quietness of spirit in your household. :angel:

PixiePop
03-19-2007, 04:30 PM
Paige~

I am glad you got some positive news.:hug:

Miss Jasmine
03-19-2007, 04:35 PM
Paige, :hug: It is good news, but I do understand what you are saying.

hiwaygal
03-19-2007, 07:36 PM
Paige:hug:

I can understand how you are feeling...we'll celebrate for you;) :hug:

paigevz
03-20-2007, 08:02 AM
Yeah, I kind of figured it out. It's good news, but it came with the bad news. It's temporary good news. He's better right now. Buys us time. But they also threw in that NEVER GOING INTO REMISSION part. We knew that was an ultrasmall chance, but it was a chance.

The really great part though is he is much more accepting of it, and we can talk about it. His left shoulder still is giving him a lot of muscle pain. This has been months now. We talked last night about the possibility of it being from the liver or the meds or both (and also laughed about it maybe just being from nearly being 40).

So, we made it up the hill on the coaster, I got a little scared at the top there.........it's okay, we're going down now........then we'll just coast a while.......until the next hill. :thumbsup2

Miss Jasmine
03-20-2007, 11:33 AM
I'm so glad you can talk about it now. That makes a huge difference.

paigevz
04-25-2007, 01:02 AM
So our last sonogram came back free of liver cancer............still coasting.......time is so important...........time is all we can ask for.......just time.:thumbsup2

Just one year of love
Is better than a lifetime alone,
One sentimental moment in your arms
Is like a shooting star right through my heart,
It's always a rainy day without you,
I'm a prisoner of love inside you -
I'm falling apart all around you - yeah.
My heart cries out to your heart,
I'm lonely but you can save me,
My hand reaches out for your hand,
I'm cold but you light the fire in me,
My lips search for your lips,
I'm hungry for your touch,
There's so much left unspoken
And all I can do is surrender
To the moment just surrender
And no one ever told me that love would hurt so much,
Oooh yes it hurts

paigevz
06-10-2007, 08:38 AM
So originally this thread was for me, and then it was for anyone else who may need it, who may be going through it and not be able to post about it.

Well, it won't help them if I don't post.

All has been well until May. My oldest son finally had had all he could take and began acting out in a big way. Perhaps it was even in April. He's been put into crisis counseling and now is beginning to stabilize. My youngest began imitating the oldest just recently, but as my oldest begins to get a handle, the younger is just crying a lot. So am I.

Dh has started showing some signs of a flare-up, and when he does that, I get nervous.

But whether he is showing signs or not, everyone in the house is held under the shadow of not knowing. This is such an awful thing in that way. It's great that they can feel quite well at times, but it's horrible that you never know when they'll feel like crap, and when it will finally be too much.

So our three big bad wolves are cirrhosis, cancer and pneumonia. Any one of them can occur at any time. Well, the cirrhosis is occurring, but sometimes faster, sometimes slower, and no one can say when it will be enough to cause organ failure.

No one really knows anything, and that is frustrating. All they do is wait and watch and adjust meds to slow the cirrhosis. IF he develops cancer, THEN they say..........then what? IF the cirrhosis gets too bad, we'll try methotrexate, we'll try chemotherapy, we'll try.............try. They don't know WHAT to do. And none of it does anything but slow it down. If he develops pneumonia, there will be nothing to try, his system is too down.

There's nothing more to say.

L107ANGEL
06-10-2007, 08:41 AM
aw Paige :hug:

Grumpy's Wife
06-11-2007, 07:27 AM
Paige I'm still keeping your family in my thoughts and prayers everyday. :hug:

paigevz
06-12-2007, 10:27 PM
Edema. He came home from work with edema.

Do you know he's told me that he wants to be cremated? He wants his urn on the mantle. He made a joke about knocking himself off when he doesn't like what's happening. He said knowing my housekeeping skills he'd just lay there and get ground into the carpet. I promised him I'd dustbust him up and pour him back in. He watched a show on buying the containers to be cremated IN and told me I am to buy the cheapest cardboard box they have. I can NOT get that image out of my head. Him in the flames.

How do I do this?

Tricia, Angel. :hug: