Monday, March 07, 2011

More comments and thoughts

Well, if nothing else, I will keep you busy reading my blog!  LOL!!!  I know we don't go back and read posts, so I like to bring them forward and make my responses ot them in a blog.  Sort of keeps the continuity of the whole process of the journey in place.

Lilly wrote:
 Here's hoping and praying that your nightmares will eventually stop! This can't make for very good nights for you. I went through many emergency room visits with my hubby, almost a year of dialysis and all the side effects, and then the kidney transplant/donor surgeries. I feel very fortunate that I did not dream about these things when I went to bed . . . don't know what I would have done! Really hope it gets better for you. As for yours and everyone else's blogs: I think it is more for us, as we "get it" in a way most diabetics are incapable of. As you said, at first you got nasty messages from pissed off diabetics! The medical profession is focused on the diabetic patient (although they don't know how to treat them half the time), but how often do they ask us how WE are doing? And how can we possibly find a therapist who can actually understand and really help? I can't believe that everyone told you it was your disease. WOW. YES, we really do need to support each other, in every way possible . . .
I think those who have needle phobias, blood phobias and white-coats syndrome know that sometimes the nightmares never go away. I was going to do a separate blog on the dialysis machines.  When he was in ICU, they brought the machine into his room.  The 3rd day, the machine broke.  I don't mean that it broke.  3 hours into the process.  The 4th day, they brought in another machine and it, too broke.  How on earth can you have dialysis machines in an ICU unit that break????  Trust me, that alone is more than enough to cause nightmares!

At that point, I didn't even know that it's ok to stop a dialysis treatment in the middle of it.  I hadn't done any research.  I was completely unprepared for dialysis as we were not expecting it.  Trust me, I think at this point I'm completely preapared....I think I could give a seminar on it.  I could sure do a better job than anyone in the hospital did.  But because of my phobias that I have had since I was 10 years old....I won't do it again.  And he knows it.

And then she wrote:
Sorry, I had to laugh, as my hubby will tell anyone who wants to listen that he does not have high blood pressure or cholesterol, and he has no heart or kidney problems. He neglects to mention that he takes meds every day for blood pressure and cholesterol, and tons of anti-rejection medicine so that he won't reject his kidney. He also reasons that since he had a triple bypass after his almost fatal congestive heart failure, and also had a kidney transplant, that everything is "fixed," and he has no problems there either! It would be funny, except that he tells his doctors this, and if it is a new doctor . . . well, you get the picture. I (just like you) will tell him to his face, in public, that YES, he does still have those problems, and that is why he takes medication for it! It must be nice to live in denial. Wish I could make it work for me!
 The more I read about your experiences, the more I think our husbands are really quite similar.  I wonder if denial is more common than I think it is.  I wonder if it's their survival mechanism.  If they admitted all of the conditions that they have, could they live with it/themselves?  Maybe denial is a way to survive.  

Lynn wrote:
I had a similar experience on the message board when trying to find support as an adoption mom (adopted one, gave birth to three)who was struggling with her adopted one reuniting with birth relatives and abandoning us for them. The pain of coping was unbearable and I sought out others...well, I found some but the birth moms and adopted people who wrote on the thread were so nasty at times i stopped going we just email each i get it...and yes, I think this blogging is for US...because we get it...we get each other...we have similar experiences in that we can't always have on the smilie face...sometimes we have to vent and rant and commiserate because we don't have it is challenging to live with someone who has diabetes. HUGS and LOVE...I LOVE YOUR BLOG!

And that, Lynn, is exactly why I do not post any of the negative comments I get from diabetics.  I know they do not understand what we go through.  I know they are in denial.  I know they are having a sugar low and being nasty just like hubby does.  So I just delete and sometimes I even ban them from making comments!

Tonight, hubby's parents called. I'll have to go back and see if I wrote about the problems I had with them the night I thought hubby was going to die.  Sigh.  So tonight, hubby was telling them how much I fought for him, how he would not be alive if it wasn't for me. (trust me, they hate me) and they didn't make a comment.  Not even a "thank you for doing this for our son."  Instead, his mom asked him what happened when he went high and low. He said that when he was high, he was irritated, and when he went low, he got sleepy.  I chimmed in and said, when he's low, he's really argumentative.  But I wonder.....does he remember anything when he goes low?

He told his mom he had been out of the hospital a week.  When he hung up, I reminded him it was 2 weeks ago yesterday.  More of the short term memory loss?  I'll just keep making my notes here.

Thanks for your comments.  I know we are getting a growing circle of spouses who truly understand, who are going through the same things, who struggle with the decision to stay or leave, who battle the non-stop rollercoaster ride on a daily basis.  It's just good to know we are not alone.


tina said...

OMG! What a nightmare we are all living through! My hubby is in esrd, on dialysis for 6 years, on transplant list (numerous complications stop the transplant from happening) ... has HBP, diabetes, and all the other wonderful problems that all of our hubby's have, but of course, it is not the diabetes! He is totally non-compliant and takes meds to "control HBP, and all the other issues). He was admitted to the hospital today after he took a bad fall, high heart rate, and just totally feeling terrible. But, I must remember "it has nothing to do with diabetes" ... are you ******* kidding me! Anyway, my heart breaks for all of us ... it is so hard being a "wife of a diabetic" ... Love and prayers to all!

Lilly said...

Unbelievable that the dialysis machine (actually broke!) twice. I can only imagine what that was like. I don't remember any machines breaking, but I do remember my husband going to have dialysis 3 times a week, and being on the machine for 4 hours (add at least another hour wait time and making sure the bleeding stopped before he left), in a large room with 11 other people all wrapped up in blankets like cocoons to stay warm. Most would fall asleep during the process even though they each had a television and headphones, none of them wanted to be there, and they all still felt like crap when they left. And then at least some would have horribly painful cramping later as a side effect of the dialysis. Knowing that, I don't ever want to do dialysis with him again, and I don't have the phobias like you do. Didn't mean to be flippant about your problems with that. It has to make everything so much harder! But no matter how you slice it, dialysis is a really rough way to have to live.

I also wonder as you do, if the denial is exactly that: a survival mechanism. But it is still unreal the things that they will swear by! For example, hubby gets mad at me when I tell him he has heart problems. He will say: "But I don't have them anymore, because the bypass took care of it." Sometimes, you don't know whether to laugh or cry. And yes, I think our husbands are very much alike in this. Interesting that yours also loses track of time. Mine will always tell me he did something "yesterday," when I know that sometimes it was several days ago. The short term memory thing is troubling, as I'm not thinking it will get any better.