Thursday, December 29, 2011

Christmas "Adventure"

We got through the Christmas holidays . . . some of it good, some of it crazy.  Kind of "normal," I guess!  Hubby still overdosed on Christmas cookies, but I was with friends for much of it, which was not a bad thing.  Christmas day, we were all together with family, and it was a good day.  We had taken separate vehicles to my brother's, as there was not room for everyone plus gifts in one vehicle.  Hubby left for home first, with me following a little later.  Halfway home, I got the phone call . . .

Hubby had gotten in an accident with his truck, trying to avoid deer that ran across the road.  He ended up in a very deep ditch, and couldn't open the doors to get out.  He swears that he was airborne for a moment, when he hit a driveway, and then narrowly missed a telephone pole before landing in the ditch.  Oh, and the underside of the truck also caught fire, which he wasn't even aware of, as he called for help.  Fortunately, some "good Samaritan" neighbors came along, recognized what was going on, and helped him climb out the window.

By the time I got there, there were flashing lights everywhere: ambulance, fire and police.  Very scary.  We spent the evening in the emergency room, but he was sent home with only bruises.  It could have been so much worse . . . thankfully, it was not.  The truck is a mess, but hopefully fixable. 

He is now very sore, and not wanting to drive.  I think he scared himself.  Low blood sugar was not an issue this time, but he said his foot slipped off the brake, and hit the accelerator instead . . . maybe because of his spinal stenosis?  Was he aware that he was hitting the accelerator?  I think he's wondering if he should be driving anymore.  Good question . . . should he be?  And what happens if he can't?

Friday, November 25, 2011

Post Thanksgiving

I sincerely hope that everyone had a good Thanksgiving.  My hubby was there for ours.  Is anybody surprised?  He began the day by crashing to the kitchen floor when he got his foot tangled up in his pant leg.  Of course, he informed me that the walker wouldn't have helped prevent that fall, either. 

I had had a discussion with him before the "big blow-up," and had asked him to please monitor his blood sugar very carefully for the holiday, as it is always an issue, and he normally gets nasty when it goes sky-high from eating too much of everything.  I shared with him how this trashes the day.  I think he tried, and we got through the day with no craziness.  I did sit at a different table from him with our friends, as we needed 2 to accommodate everyone. 

I am still not talking that much to him, although he is acting as if nothing happened.  Par for the course.  I have now learned how to check the readings on his glucose testing meter.  The day the blow-up happened, his blood sugars appeared to be in the realm of normal . . .

It was a good day with friends and family.  Thank God for that. 

Tuesday, November 22, 2011

Happy Freaking Thanksgiving

Went to 5 different places after work tonight, getting odds and ends for Thanksgiving dinner.  Having lots of family and friends over, and I was feeling pretty good about it, as I got everything I need, and looking forward to spending the holiday with people that I love.  I am just pulling out of the last store I had to stop at . . .  

Then I get the phone call.  He asks me to pick up a sub for him for dinner.  I respond (hesitantly, while thinking of the ice cream that's now melting in the back seat) with, "I guess I could . . ." and he cuts me off with, "Well, with that attitude, just forget about it.  I'll get something myself!"  I ask him what attitude, and he continues to rant.  Mind you, he's been home all day, he has a whole refrigerator cram-packed full of food, and he says there's nothing to eat.  Maybe because there's no junk in there?  I finally give up trying to talk to him, as he isn't making any sense and is being very nasty with no reason.  The yelling continues after I get home, and I yell back this time, telling him he needs to check his sugar, and he is way over the top with the way he is acting.  The accusations from him just escalate, as he brings up everything he can think of that I have or haven't done that has pissed him off for the past several months.  Wow, how do I even respond to that? Of course, he is always right, and I am always wrong. :-(  I am so, so tired of always being "the one" who has somehow wronged him.  He always thinks his behavior is just fine!  I did not deserve this crap tonight!

He also informed me that he will not "be there" for Thanksgiving dinner Thursday.  At that point, I responded with, "That's awesome," which I don't think was the response he was going for!  I wanted to ask him where he was going for dinner, since we are having Thanksgiving at our house?  Happy freaking Thanksgiving.

I am now in the basement, in my "woman cave," trying to de-stress.  At least it's quiet down here.



Saturday, November 19, 2011

Spinal Stenosis and Walkers?

Almost every day when I get home, my husband greets me with another story about how he fell "again," and shows me the bruises.  He now has 3 walkers, and refuses to use any of them.  When I ask him why he doesn't use a walker to prevent the falls, I always get a response that goes something like this: "I can't use the walker for this problem.  It doesn't help, or keep me from falling."  I am really having a hard time swallowing this, as 2 of the walkers have seats on them that allow him to sit down if he gets into trouble.  I'm also (forgive me) getting tired of hearing the same old story, as I feel he could do something to prevent the falls.  I'm really beginning to wonder (not for the first time) if he just enjoys the attention he thinks his "falling stories" will get him.  He doesn't normally fall when we go out.

Anyone out there: if you know anything about spinal stenosis and whether or not walkers can help, I would be very interested in hearing your views.  This is driving me crazy.

Response to Anonymous with Diabetic Wife

Anonymous commented on a post from awhile back on "Why Do I Stay?"  I have brought it forward from the comments section so that it doesn't get "lost" as comments so often do:

"Ive been married to my wife who has type 1 for a little over a year now. I've always struggled with her extreme moodiness and other issues (long before marriage) but suppose I have been naive to think they might change for the better (we are even in counseling). Some days are great but others are ugly. Trying my best to not let the ugly days out number the great ones but sometimes it seems impossible. Right now we don't have any kids or huge financial situations tying us together but I do take my marriage vow very seriously and feel guilty leaving someone with a chronic illness. On the other hand I don't know if I can put up with her extreme moodiness (especially if it becomes more frequent) let alone how to deal with kids and this situation? Decisions, Decisions? Thanks for posting your thought process coming from a somewhat similar situation."
Dearest Anonymous,

Thank you for your responses.  It is kind of rare that we get men with diabetic wives commenting on here, and it's good to be reminded that this world of diabetes can go both ways.

I have tried counseling with my hubby, to no good end. It always ends up badly, as he thinks the counselors, psychiatrists, psychotherapists, and even doctors don't like him and are ganging up on him, and he usually starts yelling.  There have been a couple of lucid times when he "gets it" for the moment, but unfortunately it never lasts.  What happens is the minute anyone challenges his messed-up thinking, he goes on the defensive, and has to somehow make it their fault. It has been very disheartening, and has made it hard for me to hope for anything to change for the better.  I ask myself almost every day how long I can do this.  I am truly sorry to be so negative, as I know you are searching for answers.

As far as kids: I have always been very grateful that we don't have children together. My son was out of the house before we got married, and my spouse never had children.  Personally, I can't even imagine bringing kids into this situation, but I also know some of my younger readers do have children and/or are trying to have them.  Any comments on raising children with a diabetic spouse would be appreciated.

In the meantime, Anonymous, enjoy your kayaking (which you mentioned in another comment).  It helps . . . just be careful!

Take care,


Wednesday, October 26, 2011

"A Diabetic Spouse" now open to invited readers only?

This post is really to Sandy, as I don't know how else to reach you.  Just tried to read some of your posts (I have been "away" for awhile!), and apparently your blog is now open to only "invited" readers?  Hope everything is okay . . . :-(


Monday, October 10, 2011

My fault . . . really?

Started the long weekend that I had so looked forward to with screams from hubby that the dog had peed all over his bedroom rug, and that it was "my fault" because I had not let her out.  The normal scheme of things (for years) is that on the weekends, I sleep in for an hour or two (which is the only time I get to do this!), and he lets out the dog, since she does sleep in his room, not mine.  When I did get up and opened the door to let her out and feed her, he yells at her to "stay right there!" and then starts yelling at me that she has peed on the rug, it's my fault, and that I need to clean it up. 

I told him to stop it because he was sounding crazy again, and that I was not cleaning up something that was not my fault.  And who in hell tells a dog to "stay" when she probably needs to go out anyway???  He then told me that I never know when to shut up!  Are you kidding me?  Honestly, I felt like packing my bags and leaving again.  A little hard, as my nephew had stayed overnight, and probably heard the whole exchange between us.  Hubby did finally clean it up much later in the afternoon when he finally decided to get out of bed. 

When I tried to discuss this with him later, his excuse for not getting up and letting her out is that he "can't walk well early in the morning!"  I am so sick of the excuses, as he has one for everything.  He then informed me that the conversation was "over."  Really?  Not for me, not by a long shot, as the dog urinated on his rug again the next morning.  His latest complaint?  His room smells like dog pee!  Gee, I wonder why?   I feel sorry for our dog, as she had to be pretty desperate to do this.  This is not her normal thing.

At least 2 positive things did happen over the weekend, though: my nephew helped me clean out all the "killer weeds" in my flower and vegetable beds, and we (nephew and I) went kayaking for several hours.  The yard looks so much nicer now, and being out on the water was wonderful.  Amazing weather, so was able to enjoy being outside.  I have every intention of enjoying it while I can.

Sunday, October 2, 2011

Fighting to keep my head above water

Haven't been writing lately, as there has just been so much going on.  Hubby is basically doing NOTHING since I got back from my trip in August.  He is either sleeping, watching TV, or planted in front of the computer.  So I pretty much get to do it all.  It's all so depressing. 

Needless to say, "it" doesn't all get done, as I am also working, attempting to clean house and care for an elderly parent, regularly visiting another elderly family member, and also dealing with some garbage that an evil sister-in-law has created, which may or may not end up in court.  Stop the world already, I want to get off!  It would be so much better if I could at least sleep at night. 

One bright spot: I have finally gone kayaking a couple of times this week.  Could have spent the time doing something else that should have gotten done, but . . . I reveled in the peace of being out on the water.  Need to get out there again soon, as it is starting to get colder.  Now, if I could only kayak away from all my problems, I'd be all set!

Saturday, September 17, 2011

(UN) stimulating conversation

Maybe I'm mean for even feeling this way, but:

I would so love it if my husband could greet me when I walk in the door with something (anything!) other than telling me how bad he has felt all day, and how he couldn't get anything done.  Does he think that lets him off the hook for not getting out of bed all day, or doing anything besides watching television?   I find myself slipping into monosyllabic answers almost immediately, as I don't want to talk about his illness non-stop anymore.  And if he's not talking about how lousy he feels, he is talking about something else he wants to buy that we don't need.  Both topics of conversation upset and exhaust me . . . and if I try to actually discuss anything else with him, he will immediately disagree with what I am trying to tell him and I have to justify myself in some way.  Also exhausting, and makes me angry!  Oh, and most of his talking is still way too loud and non-stop.  He blames it on his hearing aids not working, but he just got 2 brand new ones.  What the heck?  Have been spending more and more time away and in the basement after work, as he doesn't come down there very much.  Does this make me a b***h?  Sometimes I wonder . . .  

Monday, September 5, 2011

Back home again

My trip was amazing.  So wonderful to reconnect with family, and I even went hiking in the Rockies!  Wonderful.  It is now time to return to the "real" world, which is not so easy.  Surprisingly, hubby did manage to have the house somewhat together when I got home.  Didn't know whether to be happy about it (of course I was), or a little angry that he doesn't make more of an effort when I am here.  Oh well . . .

Here is (sort of) a picture of me in the mountains.  Thank God for moments like this:

Tuesday, August 2, 2011

Taking a trip . . . :-)

I leave tomorrow for an extended trip to 2 different states: one southern and one western.  Looking forward to seeing family that I almost never see, but are very dear to me.  Will be gone almost 3 weeks, and am giving friends and family a "heads up" that hubby will be on his own.  Hopefully, everything will be okay.  I worry, but I also really need to get away for awhile: to spend time with family I love, and just to regenerate mentally and physically. 

Sunday, July 31, 2011

Close Call for Both of Us

We are just wrapping up a camping trip with friends in our motor home today.  For the most part, it's been fun, with no out of control episodes with hubby.  Whew!  The last few days have been good time to unwind.

However, getting here was more than we bargained for.  Going almost 70 MPH on a major multi-lane highway,  I had a front tire blow out while I was driving.  Felt and sounded as if a bomb had exploded underneath me, as it was on my side.  Thank God, no other vehicles were in my way . . . maybe the pieces of tire which had peeled off warned them away?  I swerved over into the left lane, and was able to (carefully) hit the brake and ease it back over onto the right shoulder, with cars and tractor trailers whizzing past me soon after.  The tire was totally flat, and there wasn't much left of it. 

Hubby had gotten up to go get something to eat, and thankfully had braced himself when the thing exploded.  So thankfully, no one was hurt.  I was rather grateful he wasn't in the front seat with me when it happened, as he might have freaked out, which would have distracted me from what I needed to do.  So all in all, things worked out, thank God.  Was I shaking when I got out of the camper?  You betcha.  I guess it just isn't our time to go yet . . .  I do think we need to get AAA though.  Would probably be a whole lot cheaper to fix next time!

Tuesday, July 26, 2011

Better A1C Already!

Hubby had an appointment with his diabetes educator today regarding the CGM he got 2 weeks ago.  He was told that his A1C  has greatly improved: from over 9 to 7.4.  Absolutely awesome.  He is as excited as I am.  He also said he has been feeling better, with more energy.  Great incentive to keep up with what he has been doing the last 2 weeks!

Response to Anonymous: Why do I Stay?

Anonymous commented...
"Why don't you complaining women of Diabetic husbands just get a divorce? I'm serious? Why are you staying?"
Anonymous, It took me awhile to post your very valid question, as I had to think about it for awhile.   If you have read some of the other posts from myself and others, you would have a partial answer.  However, I will try to explain as best I can (and I will only speak for myself here): - I am still in love with the man he was when we first got married.  We used to have a lot of fun, and laughter was a part of every day.  We had a deep love for each other.  Yes, there were some disagreements, but nothing like now.  I am greatly saddened by what diabetes and all its complications has taken away from our marriage. - There is a huge part of me that doesn't want to leave a chronically ill husband.  What kind of person does that make me if I do?  I knew that he had diabetes and the beginnings of kidney failure when we got married, and I chose to marry him anyway.  In retrospect, probably not the greatest life choice, but I did know that things would get worse.  I just didn't know how much worse that would be. - Another reason that I stay (that I am not proud of) is because of finances.  I could make it on my own if I left, but it would be very difficult, and I could probably never retire. I don't know if any of this will make sense to you, but I am willing to bet that many of the "wives of diabetics" who read this will understand at least some of what I am saying.  In the meantime, I'm (trying to) hang in there without losing myself.  Some days, it's much harder than others.  Will I continue to stay forever?  I don't have an answer for that.  Right now, it's one day at a time, and I do what I can to nurture myself so that I have the strength to go on. Lilly

Thursday, July 14, 2011

New CGM and questions

2 days ago, hubby finally got a CGM (continuous glucose monitor) for his pump.  I did not go with him to this appointment, as son was still here.  Hubby is now saying he needs to check his blood sugar and calibrate the CGM 4 times a day, every day, for as long as he has it.  And of course, he is holding me responsible to wake him up to do this, as he "can't" get up!  For those of you who have experience with the CGM, is it really true that he needs to do this???  Forever?  So far, it does not seem to be giving him very accurate readings.  Any info from those of you "in the know" would be greatly appreciated right now.

It is now about 2:00 PM, and he is still not out of bed, although I know he has gotten up at least twice to visit the bathroom.  Really hoping he calibrated this morning, and doesn't give me grief later.  After all the agitation of the past week, I am enjoying the peace.

Okay, just opened this post back up to add something.  Hubby got up about 2:30, and his sugar was at 228, because (of course) I "didn't wake him up."  When I told him I had heard him get up at least twice to go to the bathroom and assumed he had taken the opportunity to calibrate the CGM then, he responded with: "But I don't open my eyes when I do that."  What absolute bullshit!  

Treading water

I have been away for awhile.  So much has gone on, yet I feel like I am treading water with hubby . . .

After 3 days of silence from me, while he continued to act as if nothing had happened after the last blow-up I wrote about, he finally asked me if I was still mad.  Gee, do you think?  We actually had a good, calm discussion, in which I let him know that our marriage was in deep trouble, and that I have almost left twice in the last several months.

This scared him, at least for the moment.  He told me that when he has one of his rages, there is part of him that knows he's doing it, but he can't stop.  His brain feels as if it is "bouncing around inside his skull", and he feels very confused and angry.  He also usually has a headache which is localized to one specific spot.  At that point, consequences don't matter to him.  I let him know in no uncertain terms that I am not willing to do this forever, and that if I leave, it will be because of his unreasonable rages.  At the time, he seemed to "get it."  He also said he would be devastated if I left.  In the meantime, he has been more careful about taking his meds at the prescribed times.

Fast forward to a couple weeks later . . . my son came for a much-anticipated visit, after not being out here in over a year.  On the way to my brother's house, my son and I were talking to each other in the front seat, and hubby was sitting in the back seat, again talking extremely loud (he has now "lost" his hearing aid).  My son turned the radio up really loud, and then back down right away, but he was "messing" with his step dad a little.  Hubby got pissed.  Then one of us said something to the other (I can't for the life of me remember what it was!) and we started laughing.  Hubby said "What?" for (maybe) the 10th time, and my son responded with "Nothing."  Hubby responds with: "Well f**k you!"  Mind you, my son had not even been in our company for a whole 4 hours when this happened.  The ensuing conversation was not exactly friendly, but my son stayed out of it the best he could.  But he later asked me if he should get a hotel room!  I told him no.

Spoke to hubby the following morning without son in earshot.  Told him he was never to speak to my "kid" like that again!  His response: "I will if I feel like it."  I then let him know that if said son got a hotel room, I would be going with him.  That seemed to cool things a little, but my son and I did almost everything we could without including hubby after that, and we had a great time.  I was just grateful he was willing to stay, as there were other rocky times with hubby during the time he was here.  By the way, neither one of us got any apologies.  Obviously, we did have a conversation in which I told my son at least some of the things that were going on.  Son now thinks of him as a "miserable old man."  Sad, but probably true.  Son left for home yesterday, and I have plans to visit him for a short weekend next month.  Wondering if he'll ever want to stay here again.  Can't say that I'd blame him if he didn't.

A small request

At the risk of being a pain in the butt:

Some of us (I speak for myself) who have reached the age of needing bifocals find it much easier to read larger text.  (You may have noticed my blog is written larger than usual).  If any of you are so inclined, and it's not too much trouble, it would be a tremendous help if you made your text size larger.  I only say this because I really want to follow everyone's musings, but sometimes I have to cut my viewing time short because of the eye strain.  Also thinking I'm probably not the only one out there with this problem . . .

Thanks so much,


Saturday, June 25, 2011

More on what the hell am I doing . . .

Hubby had an appointment with his psychiatrist a couple nights ago.  He has been scheduling them in the evening so that I can go.  I came home from work, got dinner ready, and all was well until he plopped his plate down on the floor for the dog to lick off.  (Yuck, I do NOT like him doing this, but after more than one heated discussion about it, I gave up, and just scour all dishes really well). 

All I did was ask him to wait until the dog got done (probably less than 20 seconds; she's a big dog), and then pick it up and put it in the sink.  His usual thing is to plop it in the entry way, walk away, and leave it until I either trip over it on my way out the door, or see it and pick it up.  Once again, it was like I had lit a match to gasoline.  He got all pissed off because he had to stand there and wait, and started yelling at me with liberal use of the "F" word.  He also said it was ME who always leaves the plates there.  Not true.  He then came back into the living room, saying he didn't know why I had to always get him all upset before these appointments, and stomped off to his computer.  My response: "You're kidding, right?"  No, he wasn't, and he started yelling and swearing all over again. 

By this time, my heart was pounding, and I'm thinking: what is his crazy behavior doing to me physically?  I already know it is trashing me emotionally.  He could not stop being nasty, so I told him to go to the appointment by himself, which is about 30 minutes away.  I did NOT want to be in the same vehicle with him that long.  He would not take no for an answer.  When I once again told him I was not going, he still insisted I go, but then said he wanted to drive.  I told him there was no way.  After much "crap" from him about this, he said I could drive if I would go.  At this point, it was obvious he was not going without me, and my thought was: his psychiatrist really needs to see this off the wall behavior.  So I took him there.  He did actually check his blood sugar before we left without me asking, and it was at 151.  NOT high enough to account for the way he was acting. 

He said he would not talk to me on the trip there (which was just fine with me!), but of course he did.  I lightly braked for an animal in the road; he screamed at me for not giving him warning.  I adjusted the temperature control; he screamed at me because I didn't do it right.  I also was not driving "his" vehicle the right way.  Wonderful, wonderful 30 minutes. 

When we got to the psychiatrist's, I let her know what had gone on before we got there.  He then started yelling at both of us, and blaming his behavior on me, on the fact he had had to get up early (instead of his usual 2 or 3 in the afternoon) to do blood work that morning, and also that because he had to do bloodwork he was not "on schedule" with his medication.  None of it really made any sense, and so much of what he was saying just made it very obvious that there was a lot of disordered thinking going on.  He also went off on a tangent that it was my fault that he never takes his medication when he should, because I have told him it is "his responsibility" to get up in the morning, and he "can't" get up on his own.  This also made no sense, as I had been at work all day, and he had actually taken his meds earlier than usual.  He also manages to get up in the morning when he has to for appointments and other things. 

The psychiatrist tried to explain to him that he needed to space his 3 doses of anti-anxiety meds out over a 24 hour period to get the full effect, and he was having none of that.  He argued (still yelling) with her, saying that he takes them at 3 hour intervals starting at 3:00 in the afternoon, which is about the time he gets up most days.  About half way through the session, I said, "I'm going to wait outside," as I couldn't take it or listen to it anymore, and he was still blaming me for everything. 

When all was said and done, the psychiatrist came out to the waiting room to talk to me.  They got through the session, she said he really was "sorry," (Really?  Was he?), and that she had suggested he take me out for a cup of coffee.  Yeah, right.  The only place I wanted to go after all this was straight home.  She also said she had scheduled him to see the psychotherapist, and she wanted me to contact this person and stress that he needs to be coming every week.  Okay, at least she finally got that, but I'll be honest:  I am very doubtful that it will help, as hubby is very determined that he is always right.

When hubby came to "collect" me to go home, he asked, "Do you want to go anywhere?"  I told him I wanted to go home, and he countered with: "I knew you wouldn't want to go anywhere."  So somehow, even that ended up being my fault in his eyes.  I didn't speak to him at all on the return trip, even though he tried to make small talk as if nothing had happened.  He is SO the master of living in denial.

So right now, I am trying to figure out what to do in the next couple of months.  Do I want to:

- Follow this thing through with the psychotherapist to the bitter end, although I'm sure it will leave me wide open to more verbal abuse?  He often blames me for the fact that he even needs to go to these appointments.

- Move in with another family member, who I spoke to last night, and has said I can?  Yes, the option is there, but there is not a plentiful, reliable water supply.  So if I move in there permanently, some changes would need to be made about the water situation.  Also other repairs as well.  Not sure I want to permanently leave my house where everything actually works.

- Treat the family member's house as a place to go to as I need to?  This might be a great way to deal with his bullshit rages, with the opportunity to come back if I choose . . . do I want the option to come back?  Some days, I'm really not sure.

- Just leave and get my own apartment?  Not sure I can afford it.  Also don't know if I can truly just walk out and not come back.  I actually would worry about him.

- We also have a motor home.  Don't know what his reaction would be if I just drove off in that, as we are still paying on it.  And water would still be an issue, as the tanks only hold so much.

- Continue exactly as I have been?  I don't think this is an option any longer.  I have really had it.

Thursday, June 23, 2011

What the hell am I doing?

This is one of those evenings when I wonder why I am still married to this man.  Too disheartened to write about it all right now.  I'm just so tired of the insanity.  More later . . .

Friday, June 17, 2011

Really missing you!

Dear newtothis:
Hope all is all right with you.  I miss your blog, your insight, and your sense of humor.  Take care, and know you are in my prayers.

Thursday, June 16, 2011

Ongoing coffee saga

Had to laugh this afternoon.  A friend stopped by, and my husband made a big production about getting his coffee while she was here, saying he "needed" his caffeine.  I almost cracked up right there, as he has had nothing but decaf at home for at least a week now, and doesn't have any idea.  He hasn't seemed as jittery when I get home from work, which has been a very welcome change.  I think he may be going to bed a little earlier, too (for him, this means 2:00 instead of 4:00 in the morning!).

However, another issue with the coffee keeps making me feel like I'm married to an old man.  He is constantly spilling it on the counter and all over the floor, and never cleans it up.  He doesn't seem to be aware of it, and does usually apologize when I say something.  I honestly don't know if he sees it, between his retinopathy and (thankfully, still not greatly advanced) cataracts.  I think not.  Kind of scary.  Tonight, I walked down the hall and got my feet wet on our very new carpet.  On closer inspection, I found drips leading all the way from the coffee pot to his computer room.  I did say something to him, and he seemed upset with himself, as he didn't know he had done it.  Wonder if I could get him to use a covered car mug?  That would at least maybe solve the problem with the carpet.  In the meantime . . . I'm really glad we got a coffee-colored carpet! :-D

Monday, June 13, 2011

Low blood glucose strikes again

I woke at quarter to 4 this morning when I heard a loud "thud" coming from my husband's bathroom.  I knew it didn't sound good, as there was no calling out, etc. afterwards.

Got up to go investigate, and hubby was lying on the floor in the fetal position, between the toilet and the tub.  He was also totally bathed in sweat from head to toe, and semi-conscious.  I ran to get his glucose pills, as I couldn't immediately locate the ginger ale.  Miraculously, he was still able to chew and swallow, and he took 2 glucose tablets without the usual argument he gives me over taking them.  Finally found the ginger ale (in plain sight: my brain wasn't awake yet), and got a small glass of that into him.  I then tested his blood glucose level, as he requested the testing equipment, but was in no shape to do it himself.  At this point, his sugar had gone "up" to a whopping 50.  No idea what it was when he keeled over.  By this time, he was able to talk, and was asking for cookies.  I brought more ginger ale first, as I didn't want the fat in the cookies to slow down the glucose absorption.  At some point after the cookies, he was able to get himself to a crawling position with a little help from me, and was finally able to get up and walk himself back to bed.  At that point, his glucose was at 85.

He did thank me several times for helping him, and said he had known he was light-headed, but decided to go to the bathroom first before checking.  Wrong move, but as most of us know, low blood glucose makes you "stupid."  (His words, not mine, but very true.)  When I checked the clock after he went back to bed, I realized all this had happened in less than 20 minutes.  By this time, I was wide awake.  What a "great" way (for both of us) to start the day.  :-(  The one good thing: there was no screaming or raging about anything.  I think some part of him was at least getting that I was trying to help.  Or maybe he was just too out of it to protest?

While getting ready for work, I checked on him a time or two, but he was resting comfortably and breathing normally.  Also, no more cold sweat!  I am still a little concerned, as I'm pretty sure he hit his head on either the bathtub or the floor on his way down.  He is still complaining of a headache, and his hip is paining him.

I know it could have been worse, but things like this scare the crap out of me.  What would have happened had I not checked on him?  Maybe what his endocrinologist calls a rebound blood sugar, where the body compensates after a low and goes sky high?  Or would he ever have woken up?  Sometimes, I think not knowing is the hardest of all.  As spouses, we are always second-guessing ourselves . . . or at least I am.

Monday, June 6, 2011

Camping trip

Went on a long-planned camping trip this past weekend.  Our camper allows hubby to do this, as there is a bathroom, etc. in it.  We left Friday night.  Remembering our last camping trip last fall, I told him that I wanted all of his things either packed in the camper or by the door so that I could walk them out to the camper by Thursday night before I went to bed. 

Why would I ask him to do this?  Last fall's camping trip started out like this:  I got home from work expecting to leave, as I had packed everything else the night before.  He had all day to get his stuff into the camper, so I figured no problem.  Silly me.  When I got home, it soon became obvious he had packed nothing.  When I asked what the hell he had been doing all day, he went ballistic.  Some time later, his things were all packed (amidst screaming, swearing and yelling . . . he would NOT check his sugar), and we were on our way.  But the out of control screaming got worse, especially after I insisted he check his sugar on route.  This is all while I am trying to drive a 30 foot motor home (which I never wanted, by the way.)  When he finally checked it, he claimed it was 130.  This should not have accounted for his off-the-wall behavior, so still don't know if he was being honest, or was having an anxiety attack (over what exactly?)  I actually tried to turn around and go back home twice, and he would have none of that.  Anyway, to make a long story short, we did get there, but I had to drive in the dark, missing all the fall foliage I had so looked forward to seeing.  I was so angry at him, I didn't enjoy the trip at all . . .

So anyway, back to the present.  By Thursday night, you guessed it, none of his stuff was packed again.  After several off the wall, totally senseless comments, I got him to check his sugar, which he insisted was fine.  It was 47.  Wonderful.  I went to bed, not willing to pack his clothing and meds after I had once again packed everything else.  At least this time did go better, as most of his things were in the camper when I got home Friday.   Maybe because I informed him if it was not, I would not be going this time!

We had an uneventful drive to the campground and got there when some of our friends also arrived.  First time we've been on time, ever.  Felt great.  Then we discovered the robin's nest inside the rear bumper of our camper.  4 little robins, and they had ridden the whole way there.  I felt horrible, and fed them raw turkey burger and blueberries all weekend.  Despite my best efforts, 3 died before we left, and we actually got one home alive.  He or she died sometime today, even though Mama Robin did come back to take care of him/her.  So we will never take the camper anywhere again without checking for nests!  I am feeling really bad that all the babies died, as I really did try to save them.

As for hubby, he ate everything in sight our first night out, and of course got sick.  By the time he actually got up the next day (around noon), the meter only read HIGH, which means he was over 600.  Again, wonderful.  He does this EVERY TIME we go camping with our friends, as everyone brings something special (and usually very sweet) to eat, and he has to eat seconds and thirds of all of it.  You would think he would learn!  Oh, and it also rained.  I'm thinking our next camping trip HAS to be better!  I can only hope.

Sunday, June 5, 2011

Please see comments for the last 2 posts

Thank you everyone, for the comments from my last 2 posts.  I probably should have brought them forward into a new post, but please check the comments on the posts themselves, as I have responded to them there.  I feel so fortunate to have readers/followers who are supportive.  We are just ending a rather "interesting" camping trip . . . more on my next post when I have more time to write!
Thanks again,

Monday, May 30, 2011

After the lull, comes the storm

Hubby slept (literally) for a day and a half.  All day yesterday, and got up about noon today.  He started talking about maybe going to the Memorial Day festivities which are held not too far away, and I quietly told him that I had thought we might go yesterday, but he never got out of bed.  I also let him know that the events he had wanted to go to are now over.  He countered with, "Well, if you wanted to go, you should have gotten me up!"  I told him it was "not my job" to get him up, and it was like I had lit a match to gasoline.  He started raging, and went through everything from "I should make sure he takes his pills when he doesn't get up," to "If that was the way I felt, he wouldn't bother making coffee in the morning anymore!"  Make coffee??? He hasn't been up to do that for 2 days.  He also said he might as well go back to bed, and I told him to go for it!  Of course, he didn't, and now he is stewing on the couch, of course with the TV on.  I was so mad, I also almost spilled the beans on what I did with his coffee.

After having "had enough," I have gradually changed his fully caffeinated coffee to half decaf.  My goal is to eventually have it ALL decaf, as the caffeine just makes him worse.  I know . . . I am a sneaky B**CH, but I just couldn't take it anymore.  I now have my own little coffee pot in the basement, which gets put away during the day when I am at work.  Somehow today, I don't feel the least bit guilty about it!

Saturday, May 28, 2011

Comments on my last post, and aftermath of kidney transplant

Thank you for all the positive comments from my last post.  However, I have never really felt like a "hero" for donating my kidney to my hubby.  I have since wondered if I was maybe even a little selfish about the whole thing, as I felt if I gave him my kidney, I would get to keep him for many more years!  I know this may sound weird to many of you reading this, but my thoughts and emotions over all this have always been complicated. 

As things played out afterwards,  I never really felt like my husband was the same person after the transplant.  Instead of grabbing life and enjoying it for all it was worth the way I had hoped he now could, he became more anxiety-ridden, more agitated, and sugars were more out of control.  ALL of these things can be caused my some of the anti-rejection meds he will have to take the rest of his life.  (By the way, some transplant recipients BECOME diabetic after the transplant as a result of the meds they have to take!)  But of course, he has to take these medicines in order not to reject his transplanted kidney.  And in the meantime, more things have gone wrong physically over the years because of the diabetes.  So on bad days, I really have to ask myself: did I help him or hurt him (and myself) by insisting he accept my kidney?  Sometimes, I guess there are no easy answers . . .

Sunday, May 15, 2011

My Personal Living Kidney Donor Experience

I don't believe I have gone into detail about my personal live kidney donor experience.  After reading breezysummerday's comment on Diabetes Wife's blog (whose husband went into renal failure in 2008), I have decided that maybe it is time!

First of all, I really do believe that my husband would not be here today had I not given him my kidney.  He had been a year on dialysis, and hated every second of it.  So much so that he was ready to just say the hell with it, stop dialysis, and let himself die.  If he had had to wait until a cadaver kidney was available, it most likely would have been too late for him, as he just did not want anything to do with dialysis anymore.  Dialysis is not a great way to have to live.  Many hours are spent hooked up to the dialysis machine every other day, and my husband had a very hard time of it, complete with horrible leg cramps afterwards that would literally have him screaming in pain.  That being said, hubby did not want me to donate my kidney to him, as he did not want to put me through that.  I cried and begged when we found out I was compatible, and he gave in.  There was never any pressure from him to donate my kidney.  If any pressure was applied, it was from me towards him, as I wanted to keep him around.

I went through many tests to make sure that I was healthy and that there were no underlying health conditions to preclude me from donating.  However, the first time the transplant was scheduled, hubby had some major medical complications going on (not kidney related), and the transplant had to be put off.  Unfortunately, it was put off for almost 6 months, at which time the powers that be decided that I needed to do all the medical tests all over again, just to make sure that I was still a viable candidate for donation!  Not to be deterred, I went through all the testing all over again, and then some.

On the day of the transplant, things went fine for my husband, except for him complaining that he "couldn't see" out of one eye, and that it hurt.  That righted itself within less than a day, and it was decided that his "dry eye" while under anesthesia was diabetic related.  Other than the eye, he started feeling better almost immediately.

As I started coming to after surgery, I realized I couldn't feel my left arm.  It was a numb feeling, as if I had fallen asleep with the arm over my head for too long.  I kept trying to "shake it out," but the arm wouldn't move, and it was purple in color.  My brother was standing over me, massaging my arm, trying to get color back into it.  And then the nausea started.  I will spare you details on that, but suffice it to say that they didn't give me medication in time enough to prevent this.  Most likely a reaction to the anesthesia, or possibly the pain medication.  I also had a "morphine pump" around my neck at some point, which enabled me to self-medicate as needed for pain.  However, my biggest concern was that I still couldn't move my arm.

After we went to our hospital rooms after surgery, I had a steady stream of doctors coming in to examine me.  They all looked worried, and I heard things like: "She'll need to learn how to do things with one arm," and "We need to watch for hemorrhaging."  It was obvious that they didn't know whether I would get my arm and hand back or not.  It's probably a very good thing I was doped up on morphine at the time.  They kept telling me to wiggle my fingers on the affected hand, only I couldn't.  Another thing that really freaked me out was that every time I fell asleep, I would wake up worried that somehow my arm was hanging over the edge of the bed and getting more injured.  Of course, that couldn't happen, but I would wake up and feel for it with my right hand, as I literally couldn't tell where it was.  After 2 days, my hand started to curve in like a "claw," and I had no control over it.  I was fitted with a brace to keep the hand in a normal position.  When I finally got out of bed, my left arm and hand didn't "come with" me, as I had no control over it.  When I wasn't wearing a sling, I had to literally pick it up off the bed with my right hand and cradle it as I walked.  And here's the kicker: they wanted to send me home after 3 days, with a totally paralyzed arm and hand!  At some point, I was finally able to wiggle my fingers, although I still could not feel them.  I guess someone figured I was "all better?"  One of the doctors (or PAs, or ?) told me to tell them I wanted therapy, and if I demanded that, they would have to keep me there.  So I did, and I ended up in the hospital for 7 days, the same length of time as hubby, who was feeling physically better all the time, but was righteously furious and depressed over what had happened to his wife.

When the cause of my injury was finally figured out, I was told that I had an extra cervical rib in my neck, which had put extra pressure on the brachial plexus nerves during my kidney removal.  My problem was called a brachial plexus injury.  Because of the position I was put in for the laparoscopic removal of my kidney, it put undue pressure on these nerves, and thus the paralysis.  Apparently, my arms were put over my head and secured for an extended time to get me into the "right" position for surgery.  My kidney donor advocate had tried to tell me that an open incision (larger scar, but under the circumstances, I would have gone for it!) would be the way she would go if she were personally going to do it herself when I asked her point-blank before surgery.  When I had attempted to discuss this with my surgeon before the transplant, he had dismissed her opinion.  Since I really didn't want to alienate the doctor removing my kidney and helping to transplant it into my husband, I didn't pursue this option.  Had I only known!

After the week, we were both sent home, both moving pretty slowly.  We had a family member at home to help for the first few weeks, which was kind of a necessity.  I went home with my arm in a sling, basically to keep it out of my way, as it hung from my shoulder like a piece of dead wood.  Fingers were moving more and more, but I couldn't feel anything, and the swelling in the hand was incredible.  I couldn't even tie my own shoes, or open the child-proof cap on my pain meds.  It was also left up to me to find a provider for occupational/physical therapy, as the transplant hospital was obviously not interested in dealing with me anymore.  (But they did pay for my therapy!) 

I had to change therapy providers in the middle of things, as the first one I chose really didn't know what to do with me, as they had never seen an injury like this before.  At some point, it was indicated to me that I was the "worst case scenario" regarding living donor complications at this hospital.  I have since run into others who have had mild brachial plexus injuries after kidney and/or liver donation, but nothing like what I went through.  And when the feeling started to come back (thank God!), it was extremely painful.  I have since wondered if the pain could be compared to the neuropathy that our hubbies feel, as I was put on some of the same type of meds.  The pain radiated from the left side of my neck, into my shoulder blade and back, and all the way down my arm and hand.  The only way I could sleep at night was to prop myself in a sitting position with multiple pillows, with more pillows to support my arm, as the pain meds just didn't cut it.  I was told that nerves will regenerate at about an inch a month, and that sounds about right, judging from my progress.  I was in therapy for almost a year, and it took about 2 years for me to get back the function I have now.

I got most of my arm and hand function back.  In fact, I regained more function than any of the "experts" thought I would.  I am extremely grateful for that, as some people with brachial plexus never do.  I have some arm weakness, occasional pain in my shoulder and neck, and some residual numbness in my left hand that never goes away.  The numbness/loss of feeling bugs me the most.  But I also sincerely feel that this injury should never have happened, and was totally unacceptable.  I believe that these injuries need to be taken more seriously than they are, and that not enough consideration is given to the donor.

Monday, May 9, 2011

So Exhausted

Only Monday, and I am so exhausted.  So upset over some major family issues right now that I haven't been sleeping well since Easter. 

On top of this, hubby continues to want to buy big-ticket items that we don't need, I don't want, and he won't use once he buys them.  Just got into a tangle over a huge big-screen TV that he wanted to put in the basement.   Mind you, he NEVER comes down to the basement, but said he wanted to get it for me!  This after I have told him repeatedly that I am happy with the little one that is down there.  There really isn't even room for it.  He was so determined that he was going to buy it, I had to practically get in his face about NOT doing so, and then of course he got mad at me.  What the HELL?

SLEEP would be really good tonight!  Honestly, that's all I want.  Maybe that, and some chloroform for hubby!


Sunday, May 8, 2011

Happy Mother's Day!

Happy Mother's Day to all; whether you are a mother, are hoping to become a mother, are celebrating with your mother, or are missing your mother.  I am posting some flowers from my mother's garden.  I do not have her anymore, but she managed to leave her beautiful flowers for us to enjoy.  

And finally, this trillium, one of many which I found on a recent walk.  Love you, Mom . . . missing those walks in the woods we used to take!  

May you all have a wonderful day.  Enjoy the flowers!



Monday, May 2, 2011

And the fun continues . . .

Hubby finally got up around 8:30 last night, and asked me why I didn't wake him up.  I told him because he needed the sleep!  He then goes on to tell me that he ran out of insulin in his pump while he was sleeping, and now was up to about 300.  Of course that was my fault because I didn't wake him up like he asked.

He then got into this convoluted one-sided discussion about how he "can't" take pain pills when he is that tired, as he is afraid he will never wake up.  I asked him if it had ever been a problem before, and then he got somewhat defensive, telling me I need to wake him up every couple of hours to make sure he is all right.  WHAT???!!!  God help me, I am so tired of these crazy conversations that make no sense. 

Later, he told me he would probably not stay up for very long, as he wanted to go back to bed.  I told him: "Then don't drink a pot of coffee!"  He said he wouldn't.  He actually went back to bed about 4:00 this morning, shortly before I got up for work, and guess what?  There was an "almost gone" pot of coffee in the coffee maker, still warm.  Can I never win?

Help, someone, quick:  Please tell me I'm not crazy! 

Sunday, May 1, 2011

Messed up sleeping patterns

Hubby has been awake since (maybe noon?) on Friday.  He says the pain in his back is preventing him from sleeping, but refuses to take any pain pills, or even try to go to bed.  I just told him he needs to, as he can't just stay up forever.  But then I retreated, as I will NOT get into an argument with him over this.

Yesterday, he was parked on the couch in the living room all day watching television, and/or wanting to talk non-stop to me when I was in ear-shot.  Thank God I was able to get outside and do some yard work.  I am so tired of hearing the television (mind you, he also has some hearing loss, so it was loud) that some days I just want to scream.  At least for the moment, he is in his computer room, playing a (quiet!) game.

Just wondering: Sandy, I know your hubby's sleeping patterns are off because of the medication he takes.  Are any of the rest of you who read this dealing with any of these issues?  Makes it very hard to plan much of anything.  This was part of the problem on Easter Sunday, as he couldn't/wouldn't get up and get ready to go with me in time.    

Saturday, April 30, 2011

Just when you thought it was safe . . .

I just edited this . . . somehow left  out the fact that Diabetes Wife's hubby managed to drink Caladryl instead of Pepto Bismol, with dire consequences!  Sorry, DW, don't know how I did that . . . must be the wonderful week I had.  Hope all is better now!

Have been reading everyone's posts this past week, but have been too disheartened to make any of my own posts.  It seems that things have been really awful for several of us this past week!

Sandy is feeling terribly overwhelmed with all her hubby's needs and her own exhaustion.  I'm thinking most of us have been there, as we are all human!

Crazy Wife has finally decided that she needs to make some major life changes for herself and her children (by the way, good for you, Crazy Wife . . . I know it will not be easy.)

Tom's Wife's DH broke the garage door over the hood of their car, and she says that "Mr. Jerko" has now returned.  Hopefully, he is on his way out of the low that she (just?) wrote about.

Lynn's hubby OD'd on candy, and then wanted more (I'm thinking he's not the only one that did that!)

S weathered a major meltdown from her hubby after he felt that she "said the wrong thing," then he overheard her say to herself later, "I hate you."  S, I've been there.  I say those exact words so often to myself, I feel horribly guilty much of the time! He just hasn't overheard me . . . yet!  She also wrote of family problems with a sister-in-law from hell . . . guess that's going around too, as I have a few things to say about mine today!

Sar is struggling with a multitude of problems, not the least of which is a loss of space and her own clean bathroom after moving from her much more spacious house.  She also is weathering major multiple meltdowns from her husband.  How much can one person take?  I loved her analogy to her DH's blow-up to "The Wrath of Khan . . ."

The analogy I think of for myself is the JAWS movie: "Just when you thought it was safe . . . "  I can hear the theme playing in my head,  just before the shark attacks.

For me, the week before Easter was a great one, and then on Easter morning, as I was getting food ready to take to my brother and sister-in-law's for dinner,  I managed to "say the wrong thing."  It was like World War III, and I screamed back, but this did NOT help.  Had a pie in the oven been done a little sooner, I would have LEFT sooner.  The original plan was for both of us to go, but when I got home from the Easter service (which I went to by myself), he still had not managed to take a shower and be ready to leave with me.  It was noon.  Since I was going to be late, he said he would be over later.

This was before the big blow-up; before I said the wrong thing, which really amounted to nothing.  He had asked me 3 or 4 times to re-explain the same thing I was trying to tell him about some friends at church, and I finally questioned why he kept misunderstanding what I was telling him.  WOW, wrong thing to say!  His sugar (he said) was 83 at the time, which shouldn't account for his behavior.  But then, he had slept almost 2 days straight before this happened, and hadn't been taking his anti-anxiety meds (or anything else) when he should have been.  He was still screaming when I left, telling me he would NOT apologize later, as he was right and I was wrong, and he had taped the conversation to prove it.  As I walked out the door, I told him not to bother coming at all.  He didn't, and I had a peaceful dinner with family, except . . . my brother said he had to tell me something, but he wanted to wait until after Easter.  He said it was bad, and he was obviously very upset.  Went back home to stony silence that night, and no, I still haven't gotten an apology from hubby.

So . . .  another week in the life!  May this coming week be an improvement . . . for ALL of us.  And may we all get some much-needed sleep.

Saturday, April 23, 2011

Happy Easter

Happy Easter to all of you.  May the holiday be "kind" to each of us!

Monday, April 18, 2011

Good weekend!

Just had a great weekend with hubby, which isn't something that has happened in a very long time.  Our anniversary was just the other day, and I suggested we go to a special dinner where there was gourmet food and (lots!) of wine.  Also some great music.  It didn't start until 6:30, so he had all day to get ready: showered, shaved, etc.  I rarely try to do anything with him in the morning anymore, as he often sleeps such crazy hours.   Anyway, it was great, so I will count my blessings, as he is still talking about what a great time he had.  Sugar stayed under control, he didn't get sick, no falling . . . awesome.  Just got to thinking: there haven't been any of those horrible blow-ups in awhile.  Am I just being lucky, or is the anti-anxiety medicine (that he actually kept taking this time) working miracles?  Or do we both need to be "sloshed" on alcohol to have a good time with each other?  I totally get "waiting for the other shoe to drop," but think I'll enjoy the momentum on this while it lasts, whatever the reason.  Whew, wish me luck!


Tuesday, April 12, 2011

Transplant Centers' (non) Compliance with Living Donor Follow-up

The article below is compliments of Cristy's blog, "Living Donors are People Too."  If you click on the title of this post, it will take you right to her original post.  Kinda makes me wonder what could be down the road for me, and also really scares me that there are STILL no good longitudinal studies on living donors.  WHY has this been allowed to happen?  Really does make you feel like the general consensus is: "Okay, we got your kidney.   Now you can get out of here and leave us alone!"  Makes me think even more highly of the medical profession.  Read on:

Once again, OPTN has proposed policies up for public comment:

Important to living donors is Number 7, regarding the improvement of living donor followup data. It's a document worth reading because it provides the history and background on living donor followup policies and data submission. Buried within its pages are these little nuggets:

On July 22, 2008, the committee chair gave a presentation to the Membership and Professional Standards Committee (MPSC) on the current status of living donor follow-up. That presentation explained that the Committee’s review of LDF forms revealed a large number of programs reported their donors as “lost to follow‐up” when it is uncertain if reasonable measures were taken to contact donors. Additionally, this committee’s review found that completing two data elements (status and date of status) on the form enabled a center to meet requirements for completion of the form.

We had heard rumors of such things, but this is the first time it's been confirmed that transplant centers could, in effect, return an empty form and receive credit for complying with the living donor follow-up policy.


If you recall, I spoke some time ago of the OPTN living donor data task force report that was never publicly released (It's good to know people sometimes). Here's their most damning conclusion, finally out for the world to see:

As currently collected, the OPTN/UNOS data are incomplete beyond the point when the discharge form is submitted (up to 6 weeks post donation, but much earlier for most donors) and therefore useless for research or making conclusions about living donor safety.


The living donor follow-up policy was implemented in 2000 (technically late 1999) and signed by the Secretary of State, making it mandatory for program certification and Medicare reimbursement. All similar policies require a 95% compliance rate. The centers have opposed this for a number of reasons, one of which being the number of foreign nationals brought into the country to relinquish an organ, and another being their seemingly instinctual rebellion against anyone holding them to any standard whatsoever.

Anyway, for some reason, this proposed policy says:

Also during it September 2010 meeting, the Committee did endorse developing a policy proposal to establish a threshold for the percentage of living donors that any program can categorize as “lost to follow-up” i.e. donor without a valid status (alive or dead) and accurately reported at required post operative internals. The Committee supported establishing a 10% maximum threshold for categorizing donors as “lost to follow-up”.

I am adept at basic math and 10% 'lost' would equal 90% and not 95%.


Now here's my favorite part (And by favorite, I mean the info that is most imperative to the public good). I blogged some time ago regarding the fact that some transplant centers have reported all their living donors as 'lost to follow-up'. The source article was no specific than that, but this proposed policy explanation sheds a bit more light on the matter - see page 6.

For living donors who donated from July 1, 2007 through June 30, 2008, a median 61.8% of one-year living donor follow-up forms indicated whether or not the living kidney donor was alive or dead. The number jumps to 75% of liver donors, and there are a lot fewer of them, both donors and programs.

15 transplant centers had ZERO follow-up on ANY of their living kidney donors during that time period, and only 29 were 100% compliant.

So how many met OPTN's 90% compliance rate? That's a little harder to tell since I only have a bar graph that isn't particularly detailed. However, based on the aforementioned numbers (and a handy tape measure), I'd approximate that 40 transplant centers out of over 200 know whether or not 90% of their living kidney donors are alive or dead one-year after surgery.

Living liver donors fared a bit better. Out of 73 living liver donor transplant programs*, 14 had 100% compliance while only 5 had none. Meanwhile the rest had reported somewhere between 1% and approximately 85%.

Do I need to say this isn't good?

The tragic part of this proposed policy is that it doesn't suggest anything revolutionary. It only requires transplant centers to ensure if someone is breathing, a fact that can be cooborated by cross-checking a living donor's social security number in the Social Security Death Master File (meaning that actual contact with the living donor isn't required to ferret out this information). It does nothing to improve data relating to complications, rehospitalizations, insurance status, psychosocial difficulties, or (shock) long-term ramifications.

Why so wimpy? I'll let the document speak for itself:

The Committee supports the collection of clinical data on living donors for a minimum of two years. However, the Committee understands that there is a lack of consensus on the value of clinical data on living donors during the early post operative period, and consequently anticipates there would be resistance or opposition to new requirements to obtain and report lab results for living donors for up to two years at this time.

Just to recap: Data doesn't exist, yet transplant centers have decided that data has no value. I'd like to know the logic behind that conclusion.

And how many years does the transplant industry collect information on recipients? That's right - ten.

*according to the OPTN membership directory.
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Monday, April 11, 2011

Happy Spring!

Just looking at these makes me feel better!  May we all take time to enjoy the beauty in our lives . . .

Monday, April 4, 2011

To S: A Place of Solace (Sort of!)

newtothis said...
"I like the idea of a "woman cave". I miss having a basement. In my part of the country basements are not practical. I take that back, they would be VERY practical when the wild winds attempt to pick up and take away every thing in their paths. Alas, basements are rare here. It didn't sound at all terrible to me that you were relieved when he fell asleep. Why should you feel guilty for enjoying some peace? Luckily for me DH hasn't been LOUD in a few weeks. He's been doing what he needs to for his type-2 and so far so good. However, he has lied to me. He's still not testing. The guy either doesn't know his meter stores his past tests or doesn't realize I know his meter stores past tests. Therefore, I have no idea if he's low when monster jerk shows up or he's just an incredibly mean high sugar kind of guy. I've yet to find the magic word to get him to stop and start playing nicely with others. As far as I'm cocnerned...another glass of wine is never a bad idea!"
Love, S
I know that in certain parts of the country, basements are rare because of the terrain and the expense of digging them.  I have to admit, I love my sanctuary in the basement.  I know I am very fortunate to have it.  Not everyone can have that luxury.  It is pretty much a finished basement, and I have a place for all my projects, books, genealogy, etc. When hubby started having difficulty getting up and down the stairs, I decided to make it my own, with his blessings.  I can still occasionally hear the rants, but it still gives me a "get away space" when I need it, and the weather is not the best.  Also a great place to have girlfriends over when we are crafting, etc.  THANK YOU for telling me I'm not horrible for being glad he fell asleep!  When I asked if anyone else is "loud," I'm not even talking about the screaming episodes . . . I am talking about consistently speaking (often for hours . . . God help me) in a very loud, rapid, nonstop voice, and seeming to be unaware of it, even after having been asked to tone it down.  He will give me some senseless excuse for talking so loudly, and then continue at the very same level.  Drives me crazy, to the point where I just need to get away from it.  Add to the loudness the fact that he is usually not making a lot of sense, often thinks he's being funny, and WILL NOT shut up.  If I make too much of an issue of it, then he gets mad.  Easier to just go to the basement and find something to do (which isn't hard since I have everything right there) or go for a drive somewhere else for awhile.  Honestly, I almost wonder if I could be "talked to death" if I didn't get some respite!  It is very unsettling, and impossible to relax or unwind when he is doing this.  Thus the drives, the woman cave, the wine, the . . . I could go on and on, but you get the idea. Thank you also for sharing about the highs and lows with your husband.  Mine can get incredibly mean at both ends of the spectrum, and sometimes it is hard to sort out.  At least he does frequently check his glucose levels, but not always when I wish he would.  The big giveaway for me is if he starts with the cold sweats, then I know the sugar is really low.  Unfortunately, this is usually shortly before he passes out!  Unreal that your hubby is lying to you about checking his sugar.  Sounds like he figures if he lies to you, you'll quit bugging him.  And honestly (unfortunately!) I don't think there are any magic words to get them to "play nice."  If there were, I think we all would have discovered them by now. :-(  Take care, Lilly

Saturday, April 2, 2011

What Happens When We're Gone?

Sandy commented on my Welcome . . . to the Twilight Zone! post:

"This was starting to sound like my day! My hubby has a hard time with balance and staying awake. Has hit his head, knocked himself out, gone low, and anything else you can imagine, while i am at work. Oh the joys!"

First of all, I just want to tell Sandy I am so sorry she and her hubby have had to go through all this.  There is never a dull moment, is there?  You have so much courage, and are dealing with so much. Also got me to thinking (even more than I usually do) about what things will be like in the future.  I am tentatively planning a trip to the Southwest this summer to see family.  If I do indeed go, I will be going by myself, as there will be much driving and different destinations involved.  I will be going with hubby's blessings, but I am also concerned about leaving him for that long.  At the same time, I really feel I need to go now, before things get any worse for him, and I can't go at all.  I will most likely be asking his family and our friends to "check in" on him when they can while I am gone, but am really hoping that will be enough!  Feeling like it is now or never if I want to make this trip, but still worried.   And I really do wonder: what does happen when I'm at work, etc.?  How much happens with blood sugar lows, etc. that I never know about, and he doesn't remember? 

A "Normal" Couple?

Diabetes Wife wrote (in part) the other day:

"I just don't feel like we are a "normal" couple anymore. OK, when we got married, we were. But then he went on insulin. And he decided not to manage his diabetes. But now he is doing a pretty good job of managing it. But with all the other complications....we don't have sex. Is that normal? We don't go to the movies and that used to be a weekly thing we did. We don't go out to eat and we used to do that almost every day. We still love each other very much, but we have given up so much to accomodate his disease. And yes, I do go to the movies with my girlfriends, and I go out to lunch with them. But as a couple.....he and I are a far cry from "normal" and it is due to diabetes and all of it's complications after his body has lived with this disease for 33 years.'s good to laugh at what others write about our lives." 

I have thought a lot about this, and in fact posted similar feelings the same day she wrote this.  (See my last post: Welcome . . . to the Twilight Zone!)  I totally understand what she is saying.  Sometimes, it is just so hard.  I so miss the good times we used to have before things got so crazy . . .

Today, I am just exhausted.  Hubby has been running border-line low all day (in the 80's, despite anything he has eaten, etc.).  There have been no big blow-ups, but he has talked non-stop ALL DAY LONG, misunderstood things, and been semi-argumentative . . . all this while we also had company over at the same time.  Yes, it was a family member, thank goodness, but between dealing with the non-stop (LOUD!) babble and having other people in the house, I feel like I've been run over by a steam roller.  I had looked forward to a peaceful Saturday when this person called to come over.  The thing is, it would have been fine if hubby had been on an even keel.  This sounds terrible, but I was so relieved when he finally fell asleep on the couch after they left.  And now I feel guilty for feeling this way.  Just wondering: does anyone else out there get REALLY LOUD when sugars are out of whack?  I feel almost shell-shocked by the time it is over, and he will NOT tone it down, no matter how many times I ask.

Peace at last, but it also won't be too long before bed time for me.  So, I am in my basement "woman cave," just enjoying the quiet and trying to "chill out" so that I can hopefully sleep tonight.  Thinking maybe I need another glass of wine . . .     

Wednesday, March 30, 2011

Welcome . . . to the Twilight Zone!

Sometimes, I truly feel like I am living in some weird, messed up dream.  I got home from work today a little after 5:00, and although hubby's vehicle was in the driveway, the front door was locked.  My first thought: he never got up today.  Wouldn't be the first time.  Yup, he was sound asleep, and the dog was desperate to get out, as she hadn't been out for 12 straight hours.

After I ate dinner (again, by myself), I realized his box of pills was still in the living room, untouched for the whole day.  Mind you, he has pills to take at 4 different times throughout the day, and they are supposed to be taken on time.  I took them into the bedroom, then woke him up and made sure he took them (yes, this is one of those things that really pisses me off!).  When I questioned why he was still in bed, he "explained" that he got up at some point today, then fell and hit his head.  So he went back to bed.  When I asked him if his head hurt, had a bump on it, or if he had a concussion, he told me no, but couldn't really explain why he felt it necessary to sleep the whole day away.  He then went back to sleep and slept for a couple more hours.  He is just getting up now as I am winding down for bed, and of course the TV went on the moment he got to the living room.  Most likely, he will be parked in front of it all night, while I run the fan in my room so I can sleep and not have to hear the TV.

My thought right now is that I have gotten so used to this, I just go with it when it happens.  I enjoy the quiet when he is in bed, but also get really angry that he hasn't even bothered to let out the dog or take his pills.  I gave up fighting his ever-worsening, crazy non-schedule years ago.  It definitely got much worse after the kidney transplant.  Is it the meds, his depression, being on disability and having no deadlines anymore, or has he just given up?  I have no idea, and his doctors have given few if any answers to this. 

What I do know is that I rarely plan outings that include him anymore, as it often doesn't pan out with either his wacky non-schedule or the way he feels on any given day.  It is just so much easier to do whatever it is on my own.  Yes, it makes me sad to admit that, but I still have things I want to do, and places I want to see.  Sadly, I usually do these things without him now . . .

Sunday, March 27, 2011

Thanks and Welcome to some "new" bloggers!

We have been hearing from some other bloggers recently, at least one (S/newtothis) who just began her own blog.  I have added them all to the list of blogs I follow:

S/newtothis: Day to Day with a Diabetic

Michael Hoskins: The Diabetic's Corner Booth

Sandy: A Diabetic Spouse

I have enjoyed your humor, especially when you said maybe I should "slap him upside the head" anyway, as he probably wouldn't remember later, anyway.  Glad to have you join us, and no, we are not polygamous . . . also pretty funny, but understand why that might be misinterpreted at first!

Thank you for having the courage to comment on my site, and I hope you continue to share your insights as a Type 1 Diabetic. 

Although frustrated at times, you also manage to still be positive . . . which I probably also need to be whenever possible.

Thank you all,


Saturday, March 26, 2011

First comment from a Type 1 Diabetic

Michael Hoskins said...Lilly: Thank for you for your blog, and having the courage to share such personal aspects of your life with diabetes (as a wonderful Type 3 spouse!). On one hand, it's very informative and I appreciate hearing your views... However, it does scare the crap out of me. I've been reading many of the D-Wife blogs and have traditionally found them to be focused on pre-D or T2 and much different than what I've been living with as a Type 1 of 27 years married for about five years. Yours is the first I've found, and it seems like a look into what could be down our road. That's what scares me, knowing what could be possible. I don't see the same "yelling match" type issues that so many describe, but it has happened and we acknowledge it can be an issue. I always feel horrible (and do remember) and wish it wasn't the case... Anyhow, thank you for doing what you do. I'll look forward to reading more!


Thank you for reading my blog, and I really am sorry I've scared the crap out of you!  As the spouse of a Type 1 diabetic, I feel scared as well, and that sometimes comes out as anger.  It is never easy, and I can often only imagine how it must feel for my husband at times.  Your comments are always welcome, and thank you for not being negative.  I honestly thought that if I ever heard from a diabetic spouse, he or she would be very pissed off, as I am (most of the time) painfully honest on this blog.

My husband has been a Type 1 for over 30 years, and when he was first diagnosed, he probably did not get the care and expertise that he should have had.  I can only guess at how much that affected his health later on.  I did go to your blog and read a few entries, and it sounds as if you are trying very hard to maintain yourself at optimum blood glucose levels.  I will be "dropping in" again to see how you are doing, and maybe it will help me to understand what is going on with my husband a little more, at least with controlling his sugars, as it seems you struggle with that, too.

Thank you,


Wednesday, March 23, 2011

Your kidney is my kidney: or is it the other way around?

newtothis said...
Hello Lily, I found DW a few weeks ago and have been reading the blogs she links to her site. I read your blog as well as your comments on her site. This is a comment to your comment on her blog. You had mentioned that you now correct your husband in public on his denial(s). What I found humorous was your mentioning the medication he takes so he does not reject "his" kidney. Sorry but I did laugh. I laughed because "his" kidney is "your" kidney. Right? You don't know me and I'll admit I've had a hard weekend dealing with my P-DH's mood swings. As a mother I know we GIVE birth and once given it's their's. But a kidney? Surely one who gives an organ should receive continued credit from the receiver. Especially if the person getting the organ is the spouse. Hopefully I am not too out of line for addressing this to you. If your DH can be as mean as mine the last thing I wish to bring into you life is conflict. I admire the selfless gift you gave to another. You are amazing, the only way someone is getting one of my kidneys is over my dead body. (I say this tongue-in-cheek, I'm a registered organ donor.) Thank you for your blog. S


Glad you have found my blog, and thank you for the comments.  Always nice to get a new reader!

Yes, you are right, and I understand the humor.  I think we all have learned to laugh at off-the-wall things!  "His" kidney is (or at least was) "my" kidney.  And yes, there are times I want to literally slap him upside the head and tell him he needs to take better care of himself and the kidney I gave him.

However, when I made the decision to donate, I also made the decision that once transplanted, it was his kidney.   Are there some days I wonder if I would really do it all over again?  You betcha, and on those days, I don't feel so amazing . . . but thank you for saying so!

Unfortunately, my husband underwent some mental/psychiatric changes after the transplant that I was not at all prepared for.  Some of the anti-rejection meds he will have to take for the rest of his life make his blood sugars run high, and others seem to have taken their toll on his (and my!) mental well-being as well.  The anti-anxiety meds he is taking now are probably counteracting another med he has to be on.  It is really a vicious cycle, and I wish more people fully realized that an organ transplant is never fully "over." 

Response to comments on articles

I wanted to respond to some of the comments on the past 2 articles I have posted.  Some of you have been grateful for the information, others have been ambivalent, and (thank God!) at least some of you feel it doesn't really apply to your hubby.  By the way, thank you for all the input. 

To the article on brain lesions, etc.:

Diabeteswife said...
"I have long said that if neuropathy is causing nerves to die off, blood veins to constrict.....why wouldn't it also be causing constriction to nerves/blood vessels in the brain? Only makes sense to me.
If feeling and sensitivity are gone in the feet....why not other areas of the body including the brain? Maybe it starts first in the lower extremities, but I do believe it makes it's way through the entire body.
Sure wish some doctor would agree with me!"
I agree with you: I believe neuropathy eventually involves all areas of the body.  Apparently, some doctors at least suspect what you are saying, according to the article I posted, but it doesn't seem to be something that's talked about.  I do have a friend who lost her husband a couple years ago to Type 2 diabetic complications.  Along with kidney failure, etc., he also had a severe case of vascular dementia, which his doctors felt was diabetes related.  Perhaps not directly related to nerve damage, but when she finally "got" someone to do an MRI of his brain, the vascular damage could actually be seen.  His neurologist ended up apologizing to her, as her hubby kept passing all the tests for memory, yet she KNEW something was wrong.  The MRI finally proved it beyond a shadow of a doubt.  For her and hubby, although he could not be "cured" of the progressive dementia, it helped them to know what was really happening to him. In response to the article on Type 2 diabetes and disability:
tomswife said...
"OK, honestly, I didn't read the entire article. Its too much for me. my thoughts? our young people are too sedentary and its horrible how many have or are getting diabetes but really, are we supposed to be living longer than 70, 80, 100 years old? I hate this... if someone in their 70s gets sick well, I don't want to lose my family members but do I want to go through that? its so confusing I hate reading stuff like this...."

Toms Wife,
I am also alarmed that so many young people are ending up with this disease.  I know a few of them, and it is heart-breaking to know what may lie ahead for them.  My goal in posting the article was because so much of it sounds like things many of our husbands are going through.  Yes, it is upsetting, but for me (and I hope others) it is helpful to know that some of this is to be suspected.  Still doesn't make it easy by a long shot, but I am one who wants all the information I can get: alarming or not.  Remember, I'm the "crazy woman" who gave her husband a kidney.  By the same token, the last thing I want to do is alienate one of my "sisters" by upsetting her.   Sorry if that is what I did.  Please understand that was not my intention.

Lynn Barry said...
"Excellent hubby is a textbook case it must be according to this article...thanks so much for posting it. he had a mini stroke, it effected his speech, he had a stent put in hi heart, he is on depression meds.. high blood pressure meds., hugh cholesterol meds, and all the diabetes meds, neuropathy meds. insulin, and yesterday he lost his balance and so is all expected it appears in some people and he is one of those textbook cases...he is 100% because hs was exposed to agent orange while serving in Viet Nam...he was a very active kid growing not so much. THANKS, LILLY XOXOXOXOOX"

I am happy you were able to benefit by the article.  I thought it spoke to many of us!

Crazy Wife said...
"WOW! Thanks for posting this. Although I think most of "us" already know what this disease can do. Perhaps we should conduct our own study. Do you think the Doctors even consider the effects on the spouse? I would love to find that article!!"

Crazy Wife,
I am still waiting for that study . . . on the spouses, that is!  The only thing I have seen is the really high divorce rate, which I guess doesn't surprise any of us.  If I find anything, I will be sure to post it.  Or maybe you are right: maybe we really should conduct our own study.