Autoimmune.........

[kejoda]

Paige and Minkydog, I'm so sorry that both of your dh's have to go through this. My prayers for your families.

 

[PrincessJasmine08]

Paige, we love you and there's no way you could bring us down. 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]

Paige, you're not bringing any of your friends down. 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.

It is great that you have this forum, though!

 

[paigevz]

PJ and R2..........you guys help so much.

Kejoda, thanks.

Minkydog, how are you today?

 

[paigevz]

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.

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.

 

[Shugardrawers]

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.

 

[paigevz]

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.

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

 

[minkydog]

Hi Paige,
I'm doing okay. I took my DH to IKEA today 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 ) 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. I feel bad for DH. He does not want to have this converstion.

 

[paigevz]

Hi Paige,
I'm doing okay. I took my DH to IKEA today 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 ) 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. 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]

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 ) He has about 3 more years until he makes full retirement so he's trying to hang on for those benefits.

 

[blue_river]

Paige, we love you and there's no way you could bring us down. 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....

Nice to see you here

 

[Tigger&Belle]

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.

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.

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]

Just checking in...hope ya'll are doing well on this very dreary day...

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. 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. 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]

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 ) 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.................

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]

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]

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]

Hope everyone is having a great Thanksgiving!

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]

I'm so sad.

 

[Tigger&Belle]

I'm so sad.

I'm so sorry, sweetie.

 

[paigevz]

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.