Old member- Miss you guys & dolls

    • Anonymous
      October 15, 2009 at 1:26 am

      It is me Joanf. I have found inspire support since husband does not have cidp and just want you to know that this site is so good and it is so much more simple and easy to use. Do not get me wrong Inspire is good and lots of good people like all of you however Inspire really is so much more complicated. I know it involves more diseases which is good but you can get lost trying to find just the right area you need.

      Anyway just wanted all of you to know how much I appreciated you input and pushing to move on to another doctor for a 2nd opinion. The real problem was of course my husband just felt he needed to go thru everything before he was convinced.

      Well I do wish it was Chronic Inflammatory Demylinating Polyneuropathy. instead of Familial Amyloidosis. Besides haveing no cure or treatment I feel my life is over.My husbands attitude has changed so much I hardly know him. My expectations were that we needed to spend time with each other knowing that his time is limited. I hate to be negative but he seems to not care about anything. He says he no longer worries about the small stuff. I do understand
      that reasoning but I also feel you need to appreciate what you do have now and try and make the most of your years here on earth as you will not get a 2nd chance. He stays in the house all day except for mowing the lawn (rider of course as his balance is bad) Only interest is our new cat, smoking, reading the paper (all day) and watching tv. We go out to dinner with friends and seems to enjoy that but otherwise I am missing his affection and want to do some light traveling while we can together. He has no interest in that and seems content to just do nothing. We had our 40 anniversary something to be proud of but did nothing special at all. He said tonight in front of friends that when we celebrate out 60th he will travel wherever I want to go. Funny huh?

      He knows that will never happen. We will be lucky if we get to 50 with this disease. I have some hope only because he is on a clinical trial and it has slowed or maybe stopped the progression however the amyloids are still in his heart and where else we do not know. He coughs alot , has sleep apnea and will not use his machine. He has no desire for me and it hurts badly. I know with ed it cannot happen however but closeness would at least help me and maybe him if he could just show some signs of affection. I would not even get a kiss goodnight if I did not make the move on him.

      So I guess I wanted to vent and felt I could not on the other site as I have not learned how to keep it to the members and not the public.

      Is this a normal reaction from someone who’s life is to be shortened and not knowing how soon or am I just not understanding anything. Last year I did not do alot but everyone told me I had to get out and do things for my own health. So this year I am doing more all the time. I golf (something he cannot do now) but feel guilty about it.He said if it were turned around he would golf also. I also started to learn to play bridge so that he and I could do something togethr. I play cards once a month and Mahjongg 3 times a month. That is alot but I feel more and more to get out of the house . I clean less and play more. He says I worry how the house looks and he could care less. I guess he has not noticed I clean when I absolutely have to. He is like a child in that he no longer will pick up after himself and just does not care.

      So what do I do. Any suggestions

      Hi: Hope,Dawn, Linda H., Dick S, Gab, Angel, too many to mention. How have your lives been . I noticed more new people but less from the seniors. Hope all ok. Thanks for listening
      Love and Hugs to all

    • October 15, 2009 at 10:58 am

      Nice to hear from you Joan. Sorry things are not going well. I am in a bad way too! So tired of this crap. Old timers have not been on because it seems as though the tone of the site has changed, my opinion, who knows? The world is all messed up!! Keep in touch!
      Dawn Kevies mom

    • Anonymous
      October 15, 2009 at 11:35 am

      What is going on with you. Is kevin ok. You have always been up so I know you are struggling now. Can I help you? Is he better at all.

    • Anonymous
      October 15, 2009 at 12:43 pm

      Joan – It sounds like your husband is depressed. He’s probably scared too. He’s probably pulling away from you because he thinks if he does it now it will easier on you when his body loses the battle. Maybe he’s so depressed that he just does not have the capability to care about anything or anyone…including himself.

      Maybe you could look at your attempts at physical closeness as a gift to him. Maybe that is one point of his day that he feels happy…even a little bit. Maybe it’s when he feels loved by you.

      Men are MUCH different than women in the way that they handle things. I’ve found some (most) men have difficulty expressing their feelings. He may be feeling guilty too. Like he’s the husband, the man, and he’s supposed to take care of you. And now he can’t.

      I know he’s probably becoming more stubborn as time goes by but maybe you could convince him to go to counseling. Tell him it’s for you – if that will help convince him to go.

      I feel really, really bad for him. I can’t imagine being told you have an incurable disease & eventually it will kill you. It has to be a very difficult thing to grasp & digest.

      My advice to you is to just keep loving him – for as long as you have him. I think that is the best gift you can give him.


    • Anonymous
      October 15, 2009 at 8:16 pm

      Hi Joan, it’s nice to hear from you.
      We want your updates whether they are good or bad.
      So sorry for what you and your husband are going through.
      Like Kelly has said, it may be depression.
      Keep giving him those kisses.
      Will be saying prayers for you both.

    • Anonymous
      October 15, 2009 at 11:19 pm

      There are many of us “old-timers” still lurking around, maybe just not posting as much as we once did. I remember our chat, even talking to your husband a bit first that day. I don’t know what to say or how to help. When I was at my worst, which was very bad & for a very long time, it meant so much to me when my husband kissed & cuddled me. At that time I never actually believed I would get any better (it was 2 1/2 years like that), & I lived only to spend time with him & my children. Didn’t really care to see any of my other friends; maybe I was jealous of them? I had been told by Mayo that I was terminal (that was before my cytoxan protocol at the Uof MN), & life meant family only…

      I pushed my husband to go hunting in the fall most weekends, got my mother to take care of me. How I cried when I would watch my children, husband & son-in-law take off from the driveway on snowmobiles without me. But I never said a word, as I wanted them to enjoy life. Men are different, totally different brains, so I don’t know what he is thinking. I will say a prayer for him tonight, call if you need to talk…

      Blessings, Pam

    • Anonymous
      October 17, 2009 at 11:41 am

      Hi Joan,
      I’m another one of the “old members” still hanging around this site. I go back to the old forum which we lost to a hacker. We never got to know each other, perhaps because I may have been going through alot in my personal life.

      If you need a lifeline we’ll be here for you to talk to. Just click on our names to get an email and keep in touch.

      Hugs to you and your husband, stay strong and just “be there” for him.

    • Anonymous
      October 18, 2009 at 2:44 am

      Hi, Joan, it is really good to hear from you again. We are all sorry that life is not better, but I am glad that you are taking care of you. I agree with what the others have said. I do think that there is a difference in processing a progressive life-shortening disorder compared to one that is not. It sounds like your husband is depressed and withdrawing from you. One of the hard things about interpersonal relationships is that sometimes in times of great stress, people take out their anger or withdrawal most on the people closest to them. Sometimes it is an attempt to cope with the fact that they feel like their life does not matter so much, sometimes it is just being scared and not wanting to be “like a child” to need others or be dependent, sometimes it is just feeling angry and not able to direct that anger anywhere else. I tell the families that I work with that it is the strength of the love and safety in the relationship that permits the sick one to process his/her anger in that situation. It still makes it really hard for the recipient of the withdrawal or anger.

      In my own personal journey, I have been reading about grief more recently. Elisabeth Kubler-Ross defined five stages of grief about dying or a serious illness. I added the comments based on reading.

      1. Denial. This can’t be happening. It is not so.
      2. Anger. Why me? It’s not fair.
      3. Bargaining. I’ll do anything for more time.
      4. Depression. What’s the point?
      5. Acceptance. If I can’t fight it, I may as well prepare for it.

      It seems that sometimes people jump quickly through one stage to another and sometimes they get stuck in one stage for a long time–often anger or depression. At the neuropathy support group I attend, a counselor was the featured speaker last month and she talked about circling through the stages multiple times. I know I have done this, in part because of the uncertainties that persist in diagnosis and I would expect this would/could happen with your husband with periodic hope that the experimental treatment is slowing progression or stabilizing this. For you, it sounds like you have to process that your husband will not be with you (functionally or physically) and it sounds like he is not wanting to talk about that–that he is not able to face what the future might hold for him right now why you have to process this because you have to be real and practical because you have a future with and separate from him. I have a couple of suggestions to think about.

      Maybe try to right now just talk about the now most of the time. “I would like us to go travel for a couple days to XXX. It would be really good for me to get out away for a couple of days”. Sometimes you need to talk about the future, but maybe not too much. The point is to emphasize now and yourself. This is not being selfish, it is using your love to get him out of his rut without telling him he is in a rut. As a lady growing up in the South, I learned a lot of ways to get my way nicely and kindly by being a little circular about arguments–especially with guys. The point is to get it done, does it really matter if one says all the reasons???

      Second, you may want to think about counseling for yourself. Yes, it would be great if you both could do this, but right now it sounds like your hubby cannot do this–he is still too overwhelmed. You have to do what you can to take care of yourself and then you can try to help him take care of himself better, but you are going to be living through this and after this.

      Third, hold on to what positives might come your way. Sure that was a tough statement about traveling on your 60th anniversary, but at least he has heard you that you want to travel!

      Please let us know how you are doing in your journey. We miss you here. You are family. WithHope