More background on our life with Cushing’s
Feb 14,2010
Marriage after Cushing's?
Hi,
You know how sometimes you just have to get something out and need someone to listen? Well, I'm there.
Every since you made that remark about marriage post BLA, I keep it in the back of my mind when things get bad.
Can I be nosey and ask how bad things really were? Were you sometimes thinking of leaving? Did you ever tell your husband, if so how did he react?
We just went through a bad spot last night, I saw it coming for several days but never have any idea how to derail it. Don't really think I can, when he gets high, really high, it just builds until he sits down to tell me everything that is wrong with me and that he's leaving. And believe me, when he's like this, he is the only one who has ever cared about the family and the only one who has ever done anything right. I never even try to defend myself as it just sets him off more. Although, me staying quiet makes him think that I think I'm above it all.
At least now I do know it's the Cushing's talking, although he doesn't know that. For the first 20 years when this would happen every 6-12 months I wondered where in the hell it came from. Unfortunately the first 20 years left a lot of baggage. When I would see certain signs in him I would draw back some, although that wasn't too hard as he seldom spoke unless he was mad.
He never does actually leave, sometimes I wish he would! Once he gets it out of his system he's pretty much back to usual in an hour or so. Almost like it never happened.
I keep trying to tell myself that it's the Cushing's. I can see three distinct personalities in him and quite frankly despise two of those. I keep praying that the other personality is the true Bill. I think it is, but looking back this started so soon into our marriage that I'm not sure I ever knew "him".
Looking back I can see where Cushing's was not kind at all to us & I didn't help by pulling away. Of course you can't keep setting yourself up to get told off. And you never know when that will happen. Sometimes in midsentence when it seems that everything is going fine, he will go off on a rant.
I guess I'm hoping that after a BLA and his meds get leveled out we might have a shot at being happy.
There's not many I can talk to about this. Family, while they know sometimes things are hairy, really have no idea and I can't tell them. They would hold it against him forever and I'm hoping I can learn to let it go. Friends would be the same. You seem safe as you will (probably) never meet us in person. And I don't think you would judge, having been there (or close) yourself.
Thanks for listening,
JudyFebruary 15, 2010
Dear Judy
I'm so sorry you're going through it and I hate to say it but as long as he has that cortisol flowing through then it is going to happen. Things were horrendous for us and my attitude towards my husband was a disgrace - I openly admit that now BUT some of the things that bugged me while I had Cushings still bug me now - so at least some of it wasn't just the hormones talking.
I did actually split with my husband, back in 2006, about 6 months before my GP suggested Cushings to me....about a year before I joined the boards. I threw him out the house and he went to stay with some of his family for a few weeks until I THOUGHT I'd sorted my head out, but things had been really wrong (in my head) for a few years before that - it just came to a climax then - Cushings makes you very negative so you don't pick up on the good things people do, only the bad and you pick away at the person, almost in an effort to destroy them emotionally - in my case it was because I HATED myself so didn't see how anyone could put up with such an unlovable person - if he had walked I wouldn't have cared, in some warped way it would have confirmed what I thought I knew - I didn't deserve his love so he shouldn't be around.
After the few weeks break we had (while we were still oblivious to Cushings) we both really made an effort together but it was so hard. Once the Cushings question came along I had a light at the end of the tunnel to aim for and I started to control the temper to a certain degree - some days it was still too much and I would let rip again though. At the worst points he was the worst human being who ever lived and I'd done nothing to deserve such a terrible husband, he was every negative thing you can say to a person - I was probably testing him OR trying to push him away as I didn't think I deserved such a good man. I've tried to analyze my behavior but now I try to let it lie in the past.
After my BLA, my personality literally changed overnight - I'd been scared stiff that it wasn't just the hormones that made me so awful but after I came round from the ops and sobbed over everyone, I got home a completely different person - a person I don't even remember being in there. I am amazed at the strength he showed from putting up with that evil bitch for all those years, purely because he knew the "nice" version was the real me, the person he had fell in love with, and he knew I'd re-emerge someday.
Judy - you must be so strong to have lived with 3 Cushies for all these years, I really don't know if I could have done it in this house - I don't know if I could have shown the same strength as you and my hubby...I probably wouldn't have coped and would have walked away - I was incredibly abusive and it scares me to look back and think what I may have been capable of. I'd like to think that anyone with Cushings can be cured and go on to have a normal, loving marriage - I know I adore him now, things have completely flipped - though the best thing is that now I'm cured, if we do have a tiff - he isn't scared to argue back anymore and I find that oddly reassuring, the fact he isn't scared of my temper anymore!
I'm quite sure you do know the real Bill - he is hiding in there somewhere, waiting to appear if you're willing to hang in there and wait. Has there been any news on plans for a BLA yet? If you've been posting on the boards about it then I'm sorry, I don't get a lot of time to go there with kids on my hands, keeping me busy lol!
I've told you before - I'm always here to listen if you need me, above all, take care of yourself - and if Bill has another rant just try to walk away for a while - go shopping, get your hair done - but have a break away from the stress - those hormones aren't good for your wellbeing either!
Love and hugsXXX
February 15, 2010
HI,
You have no idea how much your reply helped me this morning. I felt about the same as when I first found the Cushing's board and realized there were many people just like Justin!!
I think Bill just needs a couple more highs and a talk with Dr. F and he will be cleared for BLA. He has a tumor on the left adrenal and the right secretes excess aldosterone. So one of them was coming out anyway. Dr. F would never say which one. I was hoping that his pit surgery would not be a cure so that he could have a bi-lateral instead of a uni-lateral. I was sure a uni would probably mean two surgeries, one for each adrenal which seems like a waste of time and money. Because somehow I know that just taking out one of them was not going to be a cure.
Reading what you wrote makes me so sad for all of the families going through this. I have always said that while I know the physical part of Cushing's is bad I think the mental must be worse. I have sometimes wondered how much better I would of dealt with J&J's illness if Bill & I had been able to lean on each other, but..........
Mostly I'm just praying that we get through this intact and we don't hate each other when it's all over. Yes, I do think I know/knew the real Bill. Believe me, I would never marry the man he is most days!!
I don't talk much about him unless it's test results or such. Somehow it seems too private and casts him in a bad light. I think that most of the other Cushies would crucify him for acting like that, I think it's more acceptable for the women to have rages. And the ones that didn't get upset at him would be upset at me for not "understanding." So I really don't say anything. Although I've made a couple of comments with a new guy on the board. Poor guy, he thinks he and his wife both have it, judging from a photo, I think he's right. He says when he's in a rage he WANTS someone to fight back. I think Bill might too, but that won't happen. It's like trying to reason with a drunk, nothing good comes of it!
Thank you so much. You were so nice to tell me how bad things really had been. It gives me hope. Yes, I'm sure that even with a cure there will be things about each other that bug the heck out of us but I'm not sure that they would be a threat to our marriage at that point. Right now about anything I do can at some point be a threat.
Did you also read a lot (that wasn't really there) into casual comments that your husband made? Such as if I ever say anything about money (and not even saying there is a lack of it) he accuses me of not thinking he makes enough.
Recently I told him I was proud of how he kept working even though it about killed him (his job was very physical, but he's been laid off for about 5 months now). His response, "all I am is a work horse to you so that you have enough money to spend." It's never even worth the effort to try and tell him that wasn't at all what I was saying.
So.........
Just know that you helped me a lot.
JudyA letter or two missing here as they would be too identifying of the other person.
June 7, 2010
You make sense Judy. One problem with having various symptoms of Cushings since puberty but not getting treatment for almost 20 years is that you lose sight of who you are, you have so many moods and personalities with Cushings that when you look back you wonder which version is actually you...do I make sense? After being 2 years out of BLA, I thought I knew myself and my body - that all changed on Saturday and now I feel naive and stupid for not realizing immediately at the time that it was AI...I know nothing anymore....that scares me, especially with kids to care for. I think the enormity of everything is hitting me all over again and I feel stupid. I always assume that things I feel are anything else but hormonal, I have a love/hate relationship with the hydro so always reluctant to take extra unless I'm convinced I need to so don't know how I'll feel if I need to have more hospital or dr appointments to sort other problems out - I've been avoiding them like the plague. I've had an ear infection for months now which has made me almost deaf in one ear but I still can't bring myself to get treatment. That's verging on a phobia isn't it? Think I need a slap and a shake! X X X
June 7, 2010
If I was closer I could do the slap & shake! I thought of it a time or two with Jess but thought better of it!
I think I know what you mean about different versions of yourself. Jess had a very defined personality until a few years ago, about the time Cushing's really took hold then I saw many personalities. At least I knew what it was. Otherwise it would of scared me because it was so much more extreme than normal teenage hormones. I could literally FEEL her highs coming on. It was a little scary but it was nice to have a warning. I can also do the same with Bill.
Justin was a little different as he kept to himself so much once his symptoms got very bad. I felt very cheated though because I felt like I was just starting to get to know him (he was 15-16) as an "adult" & then he changed so much I never felt like I knew him. I will say that of the three he was the least argumentative. But that was traded for suicidal, delusional & having hallucinations. So not much of a trade off!
Not sure if I've ever known Bill or just versions of him. Some of which I like much better than others.
I do understand the doctor thing, but............. Deaf is not good & XXX is probably right about it lowering your cortisol. Heck, I never let Justin see a doctor by himself until we were here in Milwaukee ready for BLA. I felt safe letting him see Dr. Chiang by himself pre op. He was 20 yo by then & never had seen a doctor by himself!
Don't be too hard on yourself. Sometimes it's harder to see when you're close to the situation. I can quite often spot the changes in Jess & Bill before they know it. My first sign of a major Crohn's attack coming on is depression, usually for a few weeks before physical symptoms set in. You'd think after about 15 years or so, I would recognize it. Seldom! Makes me feel so stupid & I swear I'll do better the next time. Ha
You'll get this figured out, hopefully before vacation.
But tell me why it takes so long to convince someone they are in a low and need more hydro not more pain killers. Bill is going to be much worse than the kids. Jess was educated, Justin just did what I said (unless he forgot) but Bill doesn't know that much about it and doesn't listen either. ARRRGGG! We'll get it figured out.June 8, 2010
I tell you why you can't convince someone they're low on hydro...because once you get so far down you don't think as a reasonable person and you decide you need more sleep, other people to stop bothering you, less stress - it's anything else you can think of but NEVER a need for more meds! Stupid, but true a lot of the time! Thanks for the messaging - you've brought me some much needed sense. X X X
June 8, 2010
Well, I hope I helped you some & look forward to what the doctor says. Besides, I need to keep you around - you seem to be the only one who understands (or will admit to it) how hard Cushing's is on a marriage! Just kidding, I'd like you anyway ☺.
Keep me updated, whether it's a message or just a post on FB.
I'll keep you in my prayers.June 15, 2010
Bill
How are you doing now? Higher dose & meds helping? I sure hope so. I want you to be able to enjoy your vacation & of course just life in general.
Since we have discussed marriage before I thought I would tell you what's going on with the family.
First let me say, I know Bill is sick but I can't do it anymore. I don't think I ever actually put it into a coherent thought until this weekend but he has been verbally abusive for years. And while the whole marriage hasn't been bad, I just can't do it. And it's not fair to Jess.
Saturday he told me thanks for getting me to surgery, now I can quit taking my hydro & you can have what you always wanted (implying I wanted him dead). He's told me twice this weekend that he's leaving but he hasn't yet.
But he finally crossed a line. Even if he does recover from all the damage Cushing's has done to him mentally (if this is where it's all come from) I just can't live with him. Jess is staying with our youth pastor's family. They're a great family. But I know that she & I can never have a normal or even semi normal life if I stay with Bill.
Yesterday after church Jess & I went out to my sister's house to talk. Then I went & talked to our pastor. Jess said to me "But Mom, even if he gets his dose right you're still going to divorce him, right?" I hadn't even mentioned divorce at that point. Later she said "if Dad dies then we would all be free & could be happy." That made me sad.
Even Justin, who hasn't lived at home for 3 years, told me he'd seen it coming. That surprised me, never thought he paid attention. I think Bill may be the only one that doesn't see it coming. He does something like this every so often. But this time is the last.
In his mind he has rewritten our whole history to where he has done everything & I've done nothing. I don't even try to change his thinking. I feel very sorry for him but I can't help him any more, he doesn't want help at the moment.
So at some point we will separate then divorce. I had actually thought of this off & on for a couple of years. But I was afraid it would give the kids the wrong idea, if I could leave a sick husband could I also abandon them because they are sick.
He started treating them pretty nasty most of the time a few months ago. Jess tries to seldom be home & Justin seldom comes to visit. I think we all kept thinking that after surgery he would eventually start feeling better, his mood would improve, we would find his correct replacement dose, etc......... But that's a pipe dream, he doesn't care to help himself, he wants to try to punish me. Well, sorry, I'm done.
I do wrestle with "how do you leave someone who is sick?" As my pastor said to me yesterday "Sometimes you just have turn them over to God & concentrate on yourself & the rest of your family.
Just thought I'd let you know.June 15, 2010
I'm so sorry to hear you've come to this decision - not surprised, but sorry it's come to this.
I know it's a living hell for the partner/family of a Cushings patient and no, we can't be allowed to get away with it. It must be a very strained relationship Bill has with the kids as well as you - these are the things that are going to end up being HIS regret, not yours. Do not be sorry for your decision at all, you tried your best to see this through but it takes two people to make a relationship work, you can't do it on your own...and sometimes just way too much water has gone under the bridge.
I have to say I'm surprised he hasn't turned into a big pussycat after surgery though...I most certainly did and was grateful to those who HAD stuck by me for the later few years at least.June 15, 2010
....sorry, FB won't show full messages so I have to write them in bits for some odd reason....and my sister just rang so I hope you weren't waiting in anticipation for the rest lol!
Anyway - I was grateful to everyone, and of course I still have arguments with my husband, but I would call these normal, irritated, married-for-years arguments - not the vicious, nasty, all-guns-blazing rows we had when WE lived with Cushings. If those hadn't changed for us I would have been the one to go too...and I was the nasty one...
About my meds - doc emailed yesterday to tell me he wants me back to my normal dose by the end of the week. I'm not sure I want to! I feel way better taking the higher dose, and I've lost another pound - that's 5lbs total in one week - can't be good.June 15, 2010
I hope you're at peace with your decision about Bill, I certainly think you should be. :)
((((HUGS))))
XXXNovember 5, 2010
Hey Judy!
I hope your life has improved since the split? How are things going with that? I have a hard time keeping up with everything right now as well as my memory is a disgrace again.
Love and hugs,
