Wife of Type 1 Diabetic

Brain Atrophy and Type II Diabetes

2012-03-10T09:59:00.001-05:00

Just found another study, done in Pakistan and published in 2010, that links brain atrophy and Type II Diabetes. Here is the link:

http://www.ayubmed.edu.pk/JAMC/PAST/22-2/Ghayyur.pdf

Well worth the read. I cannot copy/paste the text here, as it is in PDF file.

Farther down in the article, it also mentions Type 1s and similar findings, and references the article I posted about a year ago. Here is the link for that one:

Brain Atrophy, Lesions Found in Type 1 Diabetics; May Indicate Cognitive Impairment in Diabetics Begins Early

This is scary stuff. It seems that if you have diabetes, chances are "good" that you will also be "blessed" with brain atrophy. It is still not totally understood why, although there are some hypotheses out there. Given my crazy evening with hubby last night, I'm pretty sure that is what is happening to him, and also pretty sure that I have witnessed at least one "mini-stroke" or TIA, that he would NOT acknowledge or tell his doctor about.

Last night, he was just mean, nasty, yelling about some things that didn't make sense, and even threatening divorce. I had to leave. Spent the night at my brother's house for some much needed nurturance and peace. Planning on returning home later today, but it is so hard . . . how do you reason with (or leave, or even stay with) someone who probably has brain damage?

On driving . . .

2012-02-18T13:01:00.000-05:00

Going through my posts, I realize I never really said how hubby's truck accident turned out. The truck was totaled, with 2 broken axles and a bent frame, plus other damage. Very scary. It is probably a miracle he survived. He now has another truck. However, he did not drive AT ALL until he test-drove the new-used truck. I think he scared himself, and I know he scared me! He is still driving, but not for very long distances. Also, we just found out he needs cataract surgery, which may have also contributed to the accident, making it harder to see the deer. In the meantime, if we go anywhere together, I do the driving . . .

I'm still here!

2012-02-18T11:52:00.000-05:00

Dear S and Anonymous (along with all my other readers),

Yes, I have been away for awhile. Thanks for your concern, S. I have been a little overwhelmed with all my responsibilities, both in and outside of my immediate household. Lots of family "drama" going on, and then I come home to more!

Anonymous,
You mention that you did not leave your wife because of the diabetes, but because of the negative attitude. I can sure relate to that. Yesterday, my husband felt the need to text me at work just to say he was having a rotten day because he kept falling, couldn't do anything, and had decided to go back to bed. I chose to not reply, as it sounded just about like every other day. And he still refuses to use any of the 3 walkers that he has. In fact, most days he goes to bed just before he knows I am going to get up (after being up all night watching television), sleeps most of the day, and then gets up just in time to drive me insane most of the evening with his negative comments, yelling at me and the dog, etc. Oh, and also suggestions about what "we" (really meaning "me," as he does nothing) should be doing around the house. I am not home much these days, so have fallen behind on posting.

Guess I am just a little depressed . . . :-( Really need some good weather so that I can go hiking and kayaking again. It really does help. In the meantime, I am doing some art journaling. Have to get the frustrations out somehow! Hope you all are in a better frame of mind than I am.

Cheers,

Lilly

Happy New Year to all my readers

2012-01-02T08:22:00.000-05:00

Wishing you ALL a wonderful new year. To all of "us" who are spouses of diabetics (wives and husbands alike), and also to those of you who are diabetic, but read my blog anyway. Many thanks to all of you who have empathized with me on these "pages," and also shared your insight. As always, you have helped me maintain my sanity through another difficult year! Hopefully, I have done likewise for some of you. May we all work toward and hope for a better year . . .

Lilly

Christmas "Adventure"

2011-12-29T11:20:00.000-05:00

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?

Post Thanksgiving

2011-11-25T07:48:00.000-05:00

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.

Happy Freaking Thanksgiving

2011-11-22T20:01:00.001-05:00

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.

Cheers,

Lilly

Spinal Stenosis and Walkers?

2011-11-19T11:59:00.001-05:00

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

2011-11-19T08:29:00.001-05:00

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,

Lilly

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

2011-10-26T20:46:00.000-04:00

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 . . . :-(

Lilly

My fault . . . really?

2011-10-10T08:12:00.000-04:00

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.

Fighting to keep my head above water

2011-10-02T19:25:00.000-04:00

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!

(UN) stimulating conversation

2011-09-17T13:15:00.000-04:00

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 . . .

Back home again

2011-09-05T07:34:00.000-04:00

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:

Taking a trip . . . :-)

2011-08-02T07:44:00.000-04:00

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.

Close Call for Both of Us

2011-07-31T08:05:00.000-04:00

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!

Better A1C Already!

2011-07-26T17:23:00.001-04:00

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?

2011-07-26T08:20:00.003-04:00

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

New CGM and questions

2011-07-14T13:59:00.001-04:00

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

2011-07-14T13:54:00.000-04:00

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 "mserable 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

2011-07-14T13:13:00.000-04:00

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,

Lilly

More on what the hell am I doing . . .

2011-06-25T08:12:00.000-04:00

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.

What the hell am I doing?

2011-06-23T21:13:00.000-04:00

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 . . .

Really missing you!

2011-06-17T18:30:00.000-04:00

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.
Lilly

Ongoing coffee saga

2011-06-16T21:43:00.001-04:00

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

Low blood glucose strikes again

2011-06-13T22:01:00.002-04:00

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.

Camping trip

2011-06-06T18:16:00.000-04:00

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.

Please see comments for the last 2 posts

2011-06-05T06:27:00.000-04:00

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,
Lilly

After the lull, comes the storm

2011-05-30T13:10:00.000-04:00

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!

Comments on my last post, and aftermath of kidney transplant

2011-05-28T07:52:00.000-04:00

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 . . .

My Personal Living Kidney Donor Experience

2011-05-15T10:20:00.002-04:00

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.

So Exhausted

2011-05-09T19:26:00.001-04:00

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!

Lilly

Happy Mother's Day!

2011-05-08T08:24:00.002-04:00

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!

Love,

Lilly

And the fun continues . . .

2011-05-02T19:01:00.000-04:00

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!

Messed up sleeping patterns

2011-05-01T07:10:00.000-04:00

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.

Just when you thought it was safe . . .

2011-04-30T19:57:00.004-04:00

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.

Happy Easter

2011-04-23T20:02:00.002-04:00

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

Hugs,

Lilly

Good weekend!

2011-04-18T19:07:00.000-04:00

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!

Lilly

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

2011-04-12T19:04:00.003-04:00

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: http://optn.transplant.hrsa.gov/policiesAndBylaws/publicComment/proposals.asp

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.

Happy Spring!

2011-04-11T20:04:00.002-04:00

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

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

2011-04-04T19:38:00.001-04:00

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

What Happens When We're Gone?

2011-04-02T21:30:00.000-04:00

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?

2011-04-02T20:23:00.002-04:00

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. Still....it'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 . . .

Welcome . . . to the Twilight Zone!

2011-03-30T20:23:00.001-04:00

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 . . .

Thanks and Welcome to some "new" bloggers!

2011-03-27T17:30:00.000-04:00

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

S,
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!

Michael,
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.

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

Thank you all,

Lilly

First comment from a Type 1 Diabetic

2011-03-26T21:10:00.000-04:00

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!

Michael,

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,

Lilly

March 26, 2011 12:03 PM

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

2011-03-23T19:43:00.000-04:00

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

S/newtothis,

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

2011-03-23T19:22:00.000-04:00

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 diabetesbut 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 membersbut do I want to go through that?its so confusingI 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 article...my 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 fell...wow...thanks so much...it 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 up...now not so much. THANKS, LILLY XOXOXOXOOX"

Lynn,
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.

Type 2 Diabetes and Disability

2011-03-16T17:15:00.007-04:00

For those of us who have wondered about changes in our diabetic hubbies, here is another very interesting article, also courtesy of the University of Buffalo website. The research was done in Australia. It validates what many of us have been seeing at home. Sadly, I believe my husband has every complication mentioned, even though he is a Type 1 diabetic. Although concerning, it is well worth reading to the end, as there is much information here.

Type 2 diabetes mellitus and disability

Link: http://cirrie.buffalo.edu/encyclopedia/en/article/289/

David G Bruce, MD
University of Western Australia
School of Medicine & Pharmacology, Fremantle Hospital
PO Box 480, Fremantle, WA 6959, Australia
e-mail: dbruce@cyllene.uwa.edu.au

Diabetes mellitus is one of the commonest chronic diseases and was estimated to affect 4% of the world's population in 1995. The prevalence is increasing and could reach 5.4% by 2025 (King et al., 1998). Type 2 diabetes accounts for more than 90% of cases and is often considered a condition of affluence because of its strong association with obesity and physical inactivity. Yet the majority of affected people (more than 70%) live in low or middle income countries. In low income countries type 2 diabetes tends to be most prevalent in the wealthiest parts of the population whereas in high income countries the poor are most commonly affected. These social gradients only tell part of the story however and diabetes is increasingly seen in the urban poor in all countries.
The underlying causes of type 2 diabetes are similar worldwide. Access to relatively cheap energy-rich diets coupled with obesogenic environments lead to low physical activity levels and result in metabolic changes that predispose to obesity and diabetes. The genetic basis of type 2 diabetes is mostly polygenic in origin and a family history of diabetes confers a substantially increased lifetime risk of developing the condition. This increased heritability may be due to either familial behavioural effects or through genetic and epigenetic mechanisms but it suggests the alarming possibility that a positive feedback loop could increase the susceptibility to diabetes of future generations (Fetita et al., 2006).
In predisposed individuals, various body tissues and organs become resistant to the effects of circulating insulin levels and this insulin resistance causes a range of metabolic abnormalities. Diabetes develops in insulin resistant individuals when pancreatic insulin secretion fails to compensate adequately leading to an inability to maintain normal blood glucose levels (Stumvoll et al., 2005). Hyperglycemia, i.e. chronically elevated blood glucose levels, defines diabetes and is also the cause of many of the adverse consequences that result from the disease. Established type 2 diabetes is generally irreversible and is usually progressive because pancreatic beta cells continue to lose their ability to manufacture and secrete insulin. Consequently a progressive increase in the intensity of medical therapies is required and many patients need to take multiple medications including insulin injections to control blood glucose levels. The pathological consequences of prolonged hyperglycemia include disease of the small arteries that supply the retina, kidney and the peripheral nervous system and this leads to the 'typical' complications of diabetes: retinopathy, nephropathy and peripheral neuropathy.
Many patients with type 2 diabetes also have hypertension and hyperlipidemia. This clustering of conditions, often termed the metabolic syndrome, carries a very high risk of atherosclerosis. Consequently, coronary heart disease, peripheral arterial disease and cerebrovascular conditions are also highly prevalent in type 2 diabetes and these often carry a worse prognosis than when they occur in non-diabetic people. The combination of peripheral neuropathy (causing reduced sensation in the feet) and peripheral arterial disease (leading to reduced blood supply to the lower legs) is particularly serious and patients can develop serious lower limb or foot problems related to foot ulceration, sepsis or gangrene. The morbidity of type 2 diabetes therefore includes a wide range of serious conditions including coronary heart disease (the major cause of death), vision loss, kidney failure, lower limb amputation, painful peripheral neuropathy and strokes.
There are many effective preventive and treatment options available to those with access to good health care. However the management is complex and requires patients to take on healthy lifestyle measures and self-management practices and to engage in regular and life-long monitoring of blood glucose, lipid and blood pressure levels and in medical screening designed to detect treatable diabetic complications at an early stage. Patients may be required to use glucose and blood pressure measuring devices, self-administer insulin, take complex medication regimes, engage in daily foot care and attend for regular medical checks (family doctor, diabetes physician, ophthalmologist). In many countries, specialist educators (nurses, dieticians) run clinics for patient education and support. There have been many technical improvements with new medications including newer insulin variants, devices for easier administration of insulin, the emergence of point-of-care biochemical monitoring and wearable technologies for continuous glucose monitoring. Costs of care are enormous and beyond the capacities of many health care systems and the poor. Diabetes prevention appears to be feasible but the challenges at the individual and public health level are also immense (Simmons et al., 2010).

Disabling conditions in type 2 diabetes

It is not surprising that individuals with type 2 diabetes have an increased risk of suffering from chronic disability. Many diabetic complications are inherently disabling as are the predisposing conditions, obesity and low activity levels. Recent research suggests that the diabetic state itself may be independently associated with disability i.e. not directly explained by diabetic complications. Several studies have shown that patients with type 2 diabetes have greater impairments in mobility and more difficulties performing basic activities of daily living (ADL) than similarly aged non-diabetic people (Lu et al., 2009). In addition, type 2 diabetes has been associated with an increased risk of falls, fractures, depression and cognitive impairment. Most studies have focused on single topics and few provide an overall assessment of the impact of diabetes. In a recent Australian study, we reported on 223 diabetic subjects aged 70 years or over (Bruce et al., 2003). In this community-living group, ADL disability was seen in 53%, urinary incontinence in 27%, fecal incontinence in 11%, major depression in 14% and 15% had dementia and only 36% of the sample were free from such problems.
The disablement process is complex and involves social and economic factors, lifestyle-related risk factors (e.g. poor nutrition, obesity, smoking, sedentary preference), psychological factors (personality type, coping strategies), psychiatric conditions (mood disorders, changes in cognition) and a range of disabling medical conditions (arthritis, cardio-pulmonary disease, cancer, stroke) (Verbrugge and Jette, 1994). Most of these factors that contribute to disability are also important in the development of type 2 diabetes and its complications.
The extent to which disability in diabetes is gradually progressive or catastrophic, i.e. following on from a major event such as stroke or amputation, is unknown. Studies in the general population show that an impairment in mobility is often an early step in the progression to future disability. In our own study of middle-aged patients with type 2 diabetes, 18% developed new problems with basic ADL after 4.8 years follow-up (Bruce et al., 2005). There were multiple independent risk-factors for disability in this cohort including a history of stroke, peripheral arterial disease or depression, being a smoker and taking low levels of physical exercise. However, the strongest independent risk factor was mobility limitation at baseline consistent with the general literature. Reports of mobility impairment may be a useful early marker for preventative and rehabilitation efforts in diabetes. We also studied diabetic patients with normal mobility to identify possible causes of mobility limitation. Almost a third of our patients developed some degree of limitation after 5 years and again there were multiple independent causative factors that included the presence of peripheral neuropathy, arthritis and history of stroke (Bruce et al., 2005).

Falls and fractures

Prospective studies have shown that older women with diabetes have an increased risk of falls (Lu et al., 2009). The risk of falling is probably explained by the presence of peripheral neuropathy causing balance problems and gait abnormalities (reduced speed, shorter stride length and greater step to step variability) because of sensory and motor impairments (Allet et al., 2008). Other factors are also likely to be relevant including all the causes of mobility limitation listed above. Recent brain imaging studies have demonstrated that deep cerebral white matter lesions, common in diabetes and thought to represent chronic vascular ischemic damage, also increase the risk of falls (Blahak et al., 2009). In addition, diabetes has been shown to cause a more rapid loss of skeletal muscle mass than seen with normal aging (Park et al., 2009). In the limited studies currently available, sarcopenia occurs independently of neuropathy suggesting that this is yet another diabetic complication. Not surprisingly perhaps, the increased risk of falling is associated with a higher risk of fractures, especially at the hip. Yet, patients with type 2 diabetes do not seem to have an increased risk of osteoporosis (Khazai et al., 2009).

Dementia and cognitive impairment

Longitudinal studies have demonstrated that diabetes increases the risk of dementia, mild cognitive impairment and decline in a number of cognitive abilities (Cukierman et al., 2005). This problem appears to be confined to older patients in the main and may be due to the increased incidence of cerebrovascular disease. There is a current debate over whether there is also an increased risk of Alzheimer-related pathology in diabetes as clinical Alzheimer's disease appears to be more common. Some older diabetic patients have relatively subtle deficits in cognitive function that do not meet the criteria for dementia. Commonly, deficits in frontal-executive function are found, possibly caused by microvascular disease of the frontal lobes of the brain. Importantly, such deficits can be difficult to detect, yet are likely to have adverse effects on patients' abilities to self-manage complex diabetes management regimes. This possibility is worth considering whenever older patients appear to be getting into difficulties with their diabetes.

Depression and diabetes

Major depression occurs more commonly than expected in patients with type 2 diabetes. However the relationship between the two conditions is complex. Whilst patients with diabetes have an increased risk of becoming depressed, depression has also been shown to be a risk factor for the development of type 2 diabetes. It is likely that both situations occur, diabetes is a risk factor for depression and vice versa. Importantly, the combination of the two conditions carries a particularly poor prognosis and affected individuals generally have poor diabetic control and develop more or earlier diabetic complications (Egede, 2006; Black et al., 2003). Depression in diabetes appears to be amenable to conventional therapy but patients require an integrated approach that addresses both their physical and mental health problems (Egede, 2006).

Rehabilitation

There is relatively little evidence on the effectiveness or otherwise of standard rehabilitation therapy in patients with diabetes. However there is little to suggest that they do not benefit as well as their nondiabetic counterparts from standard approaches to assessment and rehabilitation. What is clear however from clinical experience is the complexity of problems that need to be dealt with. For example, the rehabilitation team may have to consider how to conduct stroke rehabilitation in a patient with chronic kidney failure who needs to spend considerable time periods undergoing renal dialysis. They may have to consider a patient with a recent amputation who also has visual or cognitive impairment (or both). Rehabilitating a patient with diabetic foot problems can be challenging as frequently the 'good' leg is also at-risk or already showing evidence of ischemia or impaired wound healing.
Diabetic patients undergoing rehabilitation require careful assessment, goal setting and good teamwork that will often involve multiple teams. The management of the underlying diabetes frequently requires modification. For instance, some patients require a simpler regime to enable a family caregiver to administer regular medications. In other cases, improved control of blood glucose levels may assist with wound healing or pain control (high glucose levels lower pain thresholds). It is not uncommon that the goal of achieving and maintaining close to normal blood glucose levels is no longer appropriate. In such cases, the advice of the diabetes treating team is often invaluable.
Exercise is one of the mainstays of treatment for type 2 diabetes and public health guidelines frequently update recommended frequencies, duration and type of exercise. Generally, trials of exercise have focussed on effects on control of blood glucose levels or cardiovascular risk (Bronas et al., 2009) and there is little published evidence on how to treat, prevent or limit disability in diabetic patients. Some interventions that have been demonstrated to be effective in older adults may be less effective in diabetes. For example, Tai Chi improves balance, gait speed and muscle strength in older adults but appears to be less effective in diabetes (Orr et al., 2006). On the other hand, a physiotherapist-supervised group training program was shown to be effective and resulted in improved balance and reduced fear of falling in patients with neuropathy (Allet et al., 2010). Given the increased focus on disability in type 2 diabetes evident in the recent literature, more treatment trials are to be expected in the near future.

References

Allet L, Armand S, Golay A, Monnin D, de Bie RA. 2008. Gait characteristics of diabetic patients: A systematic review. Diabetes/Metabolism Research and Reviews 24:173-191.

Allet L, Armand S, de Bie RA, Golay A, Monnin D, Aminian K, Staal JB, de Bruin ED. 2010. The gait and balance of patients with diabetes can be improved: a randomised controlled trial. Diabetologia 53:458-466.

Black SA, Markides KS, Ray LA. 2003. Depression predicts increased incidence of adverse health outcomes in older Mexican Americans with type 2 diabetes. Diabetes Care 26:2822-2828.

Blahak BC, Baezner H, Pantoni L, Poggesi A, Chabriat H, Erkinjuntti T, Fazekas F, Ferro JM, Langhorne P, O'Brien J, Visser MC, Wahlund L-O, Waldemar G, Wallin A, Inzitari D, Hennerici MG. 2009. Deep frontal and periventricular age related white matter changes but not basal ganglia and infratentorial hyperintensities are associated with falls; cross-sectional results from the LADIS study. Journal of Neurology, Neurosurgery & Psychiatry 80:608.

Bronas UG, Treat-Jacobson D, Painter P. 2009. Alternative forms of exercise training as complementary therapy in the prevention and management of type 2 diabetes. Diabetes Spectrum 22:220-225.

Bruce DG, Casey GP, Grange V, Clarnette RC, Almeida OP, Foster JK, Ives FJ, Davis TM. 2003. Cognitive impairment, physical disability and depressive symptoms in older diabetic patients: The Fremantle Cognition in Diabetes Study. Diabetes Research and Clinical Practice 61:59-67.

Bruce DG, Davis WA, Davis TME. 2005. Longitudinal predictors of reduced mobility and physical disability in patients with type 2 diabetes: the Fremantle Diabetes study. Diabetes Care 28:2441-2447.

Cukierman T, Gerstein HC, Williamson JD. 2005. Cognitive decline and dementia in diabetes -systematic overview of prospective studies. Diabetologia 48:2460-2469.

Egede LE. 2006. Disease-focussed or integrated treatment: Diabetes and depression. Medical Clinics of North America 90:627-646.

Fetita L-S, Sobngwi E, Serradas P, Calvo F, Gautier J-F. 2006. Review: Consequence of fetal exposure to maternal diabetes in offspring. Journal of Clinical Endocrinology & Metabolism 91:3718-3724

Khazai NB, Beck GR, Umpierrez GE. 2009. Diabetes and fractures: an overshadowed association. Current Opinion in Endocrinology, Diabetes & Obesity 16:435-445.

King H, Aubert RE, Herman WH. 1998. Global burden of diabetes, 1995-2025: prevalence, numerical estimates and projections. Diabetes Care 21:1414-1431.

Lu F-P, Lin K-P, Kuo H-K. 2009. Diabetes and the risk of multi-system aging phenotypes: A systematic review and meta-analysis. Plos One 4:1-12.

Orr R, Comino E, Tsang T, Fiatarone Singh M, Lam P. 2006. Mobility impairment in type 2 diabetes: Association with muscle power and effect of Tai Chi intervention. Diabetes Care 29:2120-2122.

Park SW, et al. 2009. Excessive loss of skeletal muscle mass in older adults with type 2 diabetes. Diabetes care 32:1993

Simmons RK, Unwin N, Griffin SJ. 2010. International Diabetes Federation: an update of the evidence concerning prevention of type 2 diabetes. Diabetes Research and Clinical Practice 87:143-49.

Stumvoll M, Goldstein BJ, Vam Haeften TW. 2005. Type 2 diabetes: Principles of pathogenesis and therapy. Lancet 365:1333-1346.

Verbrugge LM, Jette AM. 1994. The disablement process. Social Science & Medicine 38:1-14.

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Cite this article

Bruce DG. 2011. Type 2 diabetes mellitus and disability. In: JH Stone, M Blouin, editors. International Encyclopedia of Rehabilitation. Available online: http://cirrie.buffalo.edu/encyclopedia/en/article/289/

Copyright

Copyright © 2008-2011 by the Center for International Rehabilitation Research Information and Exchange (CIRRIE).
All rights reserved. No part of this publication may be reproduced or distributed in any form or by any means, or stored in a database or retrieval system without the prior written permission of the publisher, except as permitted under the United States Copyright Act of 1976.
This publication of the Center for International Rehabilitation Research Information and Exchange is supported by funds received from the National Institute on Disability and Rehabilitation Research of the U.S. Department of Education under grant number H133A050008. The opinions contained in this publication are those of the authors and do not necessarily reflect those of CIRRIE or the Department of Education.

Did NOT mean to scare anyone!

2011-03-13T19:06:00.001-04:00

I have gotten a couple responses to my post yesterday about brain lesions, etc. Toms Wife and Lynn both commented that they are not seeing this in their husbands. I am very glad to hear that, as so many of us seem to be seeing cognitive changes in our husbands, and it is very upsetting and scary to watch. Please understand that I in no way wanted to "scare" anybody with this article. However, I did think several of us would find it more than a little interesting, as we have wondered more than once about changes we have noticed in our hubbies. If anyone else has more information, I would be very interested.

Brain Atrophy, Lesions Found in Type 1 Diabetics; May Indicate Cognitive Impairment in Diabetics Begins Early

2011-03-12T19:53:00.004-05:00

I was going through a paper pile in the basement today, and ran across this article I had printed some time ago, long before I discovered the blogs that "we sisters" read, write, and/or comment on. Managed to find the link, still on line. Notice the date is almost 8 years ago! I'm thinking this explains a LOT of what most of us are seeing with our husbands. If I find any articles that are more recent, I will post them . . . or if any of you find some, please share.

Brain Atrophy, Lesions Found in Type 1 Diabetics; May Indicate Cognitive Impairment in Diabetics Begins Early

Release Date: April 7, 2003

BUFFALO, N.Y. -- Cerebral atrophy is common in young persons with juvenile-onset diabetes, and there is evidence that small blood vessels within the brain's white matter are damaged in these patients, neurologists at the University at Buffalo and the University of Western Ontario have found.
Both findings, which are preliminary, may be important in understanding the development of cognitive impairment seen in older diabetics, said Richard K.T. Chan, M.D., assistant professor of neurology and neurosurgery in the UB School of Medicine and Biomedical Sciences and first author on the study. Vladimir Hachinski, M.D., of the University of Western Ontario, is co-investigator.
"Although brain involvement in diabetes has been suspected, this is the first study that approaches the problem in a systematic manner," Chan said. "Persons with type 1 diabetes comprise a unique population, because insulin was introduced only about 50 years ago. These people now are entering the golden years, and their quality of life can be significantly impacted by impaired brain function."
Results of the research were presented at the annual meeting of the American Academy of Neurology held recently in Honolulu.
The investigations are part of the Study of Cognitive Impairment and MRI Abnormality among Diabetics (SCIMAD) being conducted by the two institutions. The goal is to determine the prevalence of cognitive impairment among young, otherwise healthy patients with juvenile-onset diabetes and to correlate impairment with neuroimaging results and clinical indicators.
This disease also is called type 1, or insulin-dependent diabetes, because the primary symptom is the inability of the pancreas to produce insulin, requiring patients to receive insulin injections throughout their lifetime. Type 2, or adult-onset diabetes, may be controlled by diet and exercise, although many patients with type 2 diabetes require medications (including insulin) to control their blood sugar concentration.
While prior studies have suggested a relationship between diabetes and cognitive functioning, the pathway through which the damage occurs is not known, Chan said. Impairment may range from poor school performance in childhood to decreased work output and forgetfulness in adulthood.
Formal testing of brain function often reveals problems in abstract reasoning skills, eye-hand coordination and other subtle impairments in brain function, Chan noted. More recent studies also suggested that diabetes is a risk factor for dementia, including Alzheimer's disease in the elderly.
One of the problems with such findings is that much research on diabetes and cognitive impairment, particularly that concerning cerebral small vessel disease (CSVD), has been done in older persons with type 2 diabetes, where outcomes may be affected by hypertension or other chronic conditions of aging, Chan noted. The SCIMAD study was designed to study the relationship in young, otherwise healthy juvenile-onset diabetics, in hopes of learning when and where the cognitive damage begins.
There were 26 diabetic and 24 non-diabetic persons in the cerebral-atrophy study, and 33 diabetic and 20 non-diabetic participants in the white-matter-lesion study. All participants were between the ages of 18 and 50. Diabetics were diagnosed before the age of 18 and had the disease for 10 years or more. The same study population was used for both investigations.
About half of the participants were enrolled through UB, the lead institution, and half through the University of Western Ontario. All participants received brain scans using magnetic resonance imaging that were analyzed for cerebral volume and the presence of ischemic white-matter lesions at the UB-affiliated Buffalo Neuroimaging Analysis Center.
Results showed that 23 of the diabetics, or 88.5 percent, had brain volumes lower than the median for control subjects.
MRIs of six diabetics, or 15 percent, showed ischemic white-matter lesions; none were found in the controls.
Researchers will conduct cognitive function tests and compare those results with the neuroimaging results when a full cohort of 100 diabetics and 100 controls has enrolled.
"The studies provide clues to the potential neurological problems associated with diabetes, including dementia and strokes," Chan said. "The next step is for us to identify the mechanism that leads to changes in structure, and perhaps we can design treatments to slow down or prevent disease progression."
The study was supported by a grant from the Juvenile Diabetes Research Foundation International.

Permission to leave . . . at least for awhile

2011-03-08T18:26:00.001-05:00

Yesterday, Diabetes Wife commented:

"I think it helps if we give ourselves "permission" to leave. I've found that it helps to physically leave when the discussion turns heated....even if he refuses to test and I know he is low. Lots and lots of Walmart visits....I can tell you where everything in the store it! LOL! It takes me 45 minutes to get there, buy toothpaste, come home. And by then, he has calmed down. Have 8 tubes of toothpaste in the bathroom drawer and realized I need to start picking up something else! :o)"

Thank you so much for reminding me of this. I haven't done it in awhile, because I am more of an outdoors person, and the weather has not been exactly warm lately. But because of your comment, I actually started making a list of all the places I could go spend time when hubby gets impossible to be around. Good therapy for me to actively figure this out! :-) And the weather is getting warmer lately. Took a long walk this evening with our dog, who always loves me and never criticizes anything I do. I feel better already. We also have more than one park fairly close to us, so I'm planning on getting a park pass. That way, once the weather is warm, I can go to any one of these parks whenever I want, spend some wonderful, healing time, and get some exercise in the bargain. Walking, swimming and kayaking . . . I can hardly wait for warmer weather, but I now also have a list of places I can spend time at right now, too! By the way, funny about the toothpaste. Guess you'll have to start stocking up on something else for awhile.

More thoughts on do I go, or do I stay . . .

2011-03-06T13:11:00.001-05:00

Realize I haven't posted in awhile. Just haven't had the heart to, I guess. It has been a rather quiet week and a half. Hubby and I went from not talking to each other at all, to finally hashing out some of the things that have bugged/hurt both of us. When I told him that I had almost walked out the door, he said, "And I wouldn't have cared." I asked him what if I didn't come back, and he said that it wouldn't have mattered to him at that moment. Now my question is: It wouldn't matter to him in that moment, or not at all, ever? Not sure I'm ready to ask him that one yet.

We did go on to actually discuss some things civilly with each other (wow, I caught him at a lucid moment!). However, when I asked him what happens when he lashes out so viciously, I always get an "I don't know. I just don't care when I am doing it." I also shared my perception of things, and I did get a "sorry" from him, but really don't know how sincere it was. During the conversation, he did ask me: "Why can't we talk to each other like this all the time? I didn't know you felt that way." And I told him that right now he was lucid, making sense, and not screaming at me. Quite often if I attempt to initiate a conversation with him, it ends badly, so I quite often just don't bother anymore. I think at that moment, some part of him understood what I was trying to say, but who knows how long he'll remember it? Short term memory has been an issue for quite awhile, too. So, I am here, for now . . .

Re-read a couple of posts today. Crazy Wife's dad died a matter of months after her mom almost left him. Would mom have ever been able to forgive herself if she had left so soon before he had died? May seem stupid, but I worry about things like that! Diabetes Wife also wrote today that maybe there are not a lot of diabetic's wives out there writing about this, as statistics show that 80% of them leave. I guess we can all understand that! I also agree with her that we need to support each other, as this is NOT easy, and who knows how long any of us will hang in there? To all my sisters out there: know that you are special, loving, strong, amazing women. We all need to remind ourselves of that on a daily basis!

Suffering in silence . . . do I go, or do I stay?

2011-02-24T07:17:00.001-05:00

Crazy Wife shared a post on Tuesday that unfortunately, I can really identify with. Read it at:
Things I Never Knew
She tells about all the things her mother dealt with, being married to a diabetic for 40 years. Crazy Wife didn't know all the things her mother put up with until just recently. Her mother finally shared her story with her daughter, almost 3 years after her husband's (Crazy Wife's dad's) death. It sounds as if the driving force behind Mom finally telling her daughter is because she is now watching her daughter go through the same thing in her life. Mom refused to tell Crazy Wife whether she should stay with her diabetic husband or leave him, telling her daughter only she can make that decision.

I reread that post this morning, as I came very close to packing my bags and leaving last night. I am still home, but really don't know what the "right" decision is anymore. Another big blow-up where he was totally out of control, and blaming me for everything. This time, he claimed that he was angry that I interrupted his television show, which can easily be put on "pause." Then went on from there to scream at me about everything I have done for probably the last 10 years. When I tried to speak to him, he just screamed over the top of me, telling me I had yelled at him first . . . I hadn't. There was no reasoning with him. I did finally get him to tell me what his blood sugar was, as he had just checked it. He told me 167. When this very same thing happened at his doctor's with a similar blood sugar, she had informed me that was not high enough for him to be freaking out that badly. So, is she right??? Or wrong? Or is it a rebound effect from the fact that he just started his anti-anxiety meds again after being off them for . . . 1 week? 2 weeks? Who really knows? Definitely not me!

So do I go, or do I stay?

I don't want to leave a seriously ill husband, and have friends and family think: "What a bitch! How could she leave him when he needed her the most?" And he would be in trouble if I left now, as there are many things he has trouble doing and needs my help with. I wonder if HE realizes that?

On the other hand, I am SO TIRED of all the verbal/emotional abuse he has dished out over the years, and I do NOT see that ever getting any better! Yes, financially it would be hard for me, but some days I feel like almost anything would be better than this. And the few people I have talked to who REALLY know what's going on (including at least some of his immediate family) would totally understand my leaving.

So do I go or do I stay?

Wish I had an answer that I was really sure about. For now, I'm still here. But really don't know if I can keep doing this . . .

I'm not "allowed" to get sick . . . am I?

2011-02-23T17:40:00.000-05:00

Horrible night of literally no sleep and coughing and gagging until I vomited, more than once. Think I even scared hubby, as he holed up in his computer room and didn't come out for most of the night. But he also knew I wanted to be left alone, as there wasn't anything he could really do to make me feel better, except get me more tissues! Finally got allergy tested today, and among many other things, I am now allergic to cats. Bummer, as we have a couple. Oh well, the good news is that I can get "cat allergy serum" added to the cocktail of everything else I get injected with, so hope things will take a turn for the better. Unfortunately, there will be a wait for the new serum. I am really, really hoping that I can actually get some real sleep tonight, but the meds don't seem to be working fast enough.

Hubby's anti-anxiety meds finally came in the mail yesterday, and we talked about the necessity of him STAYING on them, and taking the right dosage. Still don't know if he "gets it" or not!

It's so frustrating for me when I don't feel well, as so many things go undone. That's when I realize the full magnitude of everything I normally do. Always feeling I have to stay well, as everything goes to hell when I am sick!

Why does he always have to be "sicker" than me?

2011-02-22T16:25:00.000-05:00

I am feeling so pissed off! Our kitties were due to get their shots today, and the original plan was for me to take them to the vet. However, I have been VERY SICK with allergies. Can't breathe through my nose at all, can't stop coughing/gagging because of the post nasal drip, and have also gotten very little sleep the past several nights. Since I am being skin-tested (again!) for allergies tomorrow, I haven't been able to take anything to feel better for the last few days. As I have gotten worse and worse all day instead of better, I finally knock on his bedroom door (around 1:00 in the afternoon, mind you . . . I think he planned on sleeping all day again!), and ask him if he can possibly take the cats. Oh, and I do offer to reschedule the vet appointment so I can take them at a later time, but he says "no." Okay, no problem . . . until he finally gets up. His sugar checks out at 189, and he announces, "I'm as sick as you are!" I don't make a lot of comment, as I really don't have the energy for this BS today, and he continues to bang around, complain and swear until he FINALLY leaves. Gee, I'm so glad I bothered to ask him for his help, and why the HELL does he always have to claim he is feeling at least as bad or worse than me? In other words, when I feel bad, apparently it doesn't matter to him! Makes me feel so special. I also told him I would have to sleep on the recliner in the living room tonight, and his answer to this is: "Okay, I'll turn the TV down." Since the TV is about 10 feet from the recliner, I'm thinking that's really big of him! Wondering if I can rig up something in my "woman cave" in the basement. I am so tired of never coming first in his life. How does anyone get so self-centered?

Oops . . . we transplanted the wrong kidney!?

2011-02-21T18:02:00.002-05:00

See this link:

http://abcnews.go.com/Health/Wellness/usc-shuts-transplant-program-man-wrong-kidney/story?id=12951883

The article goes on to say that "no harm was done" because (very fortunately!) the kidney was a "close-enough" match to work for the person who received it . . . thank God! Luckily, the intended recipient of the "misplaced" kidney received one a few days later. This could have been so much worse than it was. I am thinking many things about all this, but let's just say this: right now, my words fail me! Thank you Cristy, for bringing this to my attention.

Best wishes to Diabetes Wife and hubby

2011-02-21T17:07:00.000-05:00

Many kudos to Diabetes Wife today. See her post at: http://wifeofadiabetic.blogspot.com/2011/02/everyone-needs-bitch-like-me.html After 3 weeks of dealing with almost anything that could possibly go wrong with her husband's back surgery, she has made the decision to bring him home. Rehab at the hospital was anything but, with messed up or missed meds, and one scare and indignity after another. Diabetes Wife, may your hubby continue to improve, and hopefully stay off dialysis. It is truly scary when we cannot put our trust in the very health professionals who are supposed to help us and our loved ones get well. She and hubby need all the prayers and positive thoughts/energy we can possibly send her right now, as this will not be easy. May this prolonged nightmare finally have a good outcome for both of you!

Living donors really ARE people too!

2011-02-17T18:17:00.003-05:00

This is an interesting post at "Living Donors are People Too" (you may want to overlook the language used if it offends you . . . I totally get that Cristy was more than a little upset!):

http://sirencristy.blogspot.com/2011/02/and-yet-more-fuckery-from-land-of-tv.html

I seriously doubt that this person would have been okayed for a kidney transplant when they didn't even know what was wrong, but this kind of portrayal does upset those of us who have sacrificed a kidney for someone else. I don't know if I totally agree with her perception of being "maimed," but I do agree that living donors do not always get a lot of consideration, and I did have a serious brachial plexus injury from the way I was positioned when they removed my kidney. I still believe that should never have happened. I also believe that as a diabetic with many health issues, my husband had a slim to no chance of getting a cadaver kidney anytime soon.

My hubby finally got ahold of the doctor who dispenses the anti-anxiety meds he so obviously needs . . . hoping they will arrive in the mail, like . . . tomorrow! Have not attempted to sit him down and talk about the necessity of staying on this med, as I am still too angry. However, we WILL have a talk this weekend. Oh, and the "cracked rib" doesn't seem to be bothering him today!

On the plus side, the weather is getting better, and I was able to take our very appreciative dog for a nice long walk the last 2 days. GREAT therapy for both of us! And tomorrow is another day . . .

Cracked rib?

2011-02-16T18:03:00.000-05:00

Okay . . . when I got home from work, hubby announces that he thinks he cracked a rib coughing today. I know he has osteopenia from the prednisone he has to take, but is this even possible??? He insists he's done it before. This doesn't make sense to me. Mind you, he doesn't want to be seen by anybody. Should I believe him? Don't know what to think. He also forgot to call about getting his anti-anxiety meds refilled. Oh happy day . . . :-(

What a wasted day!

2011-02-15T21:26:00.001-05:00

This is literally one of those days I just want to throw in the towel, give up and run away! Took the day off to take hubby to his endocrinologist, because he can't drive that far anymore. Started out late, because he couldn't manage to get ready in time. This has been an ongoing issue, as he seems to have no concern about getting anywhere on time anymore. When I said something about needing to leave, I got screamed at because "I always make him forget things" when I make him hurry. 5 minutes later, he decides he has everything he needs anyway, but then decides he needs the GPS to get there. Mind you, we have been to this doctor plenty of times, and have never used the GPS. However, we do usually use written directions, as it is in the middle of a fairly large city. Neither of us can find the cord that plugs into the car, and I ask him: "Don't you know how to get there?" He finds the directions that he always uses, and we finally leave. Shortly after we leave, I am told I am not taking good care of his truck. Apparently he doesn't like the way I'm driving it . . . don't ask me, I don't know what the problem is either, but he always has to say something derogatory about my driving. In the meantime, he is squirming all over the seat, pulling on his clothes, complaining about everything and swearing. His sugar is around 150, so that isn't really the problem. WHAT IS??? Anyway, to make a long story short, I have not been able to do anything "right" all day long!

When we finally get to the endocrinologist (quite late for the appointment of course!), his A1C is 8.9, down from 9.1 a few months ago. There is concern expressed that it is still so high, and all he can say is, "But it's better!" When the doctor leaves the room, I tell him it is still awfully high, and he responds with, "But it's down to 8!" When I remind him about the .9 that he has conveniently left off, he gets angry all over again. The doctor ends up bringing in 3 "doctors in training" to show them that his blood sugars have no rhyme or reason, and stresses that this is what happens when someone chooses to do their own thing. Yup, that pisses him off too, and of course it's not his fault. It's obvious his doctor is not going to even attempt to talk to him about getting better control, as she has gone down that path so many times before, and has gotten nowhere because he always has an excuse for everything. Yup, I know how she feels on that score. Wonderful.

Oh and by the way: while we were waiting in the room for the doctor to come back, he finally makes mention that he has run out of his anti-anxiety medication "2 or 3 days" ago. And he didn't tell me until now? Aha, maybe that's why he's so agitated and fun to be with today??? When I question him further, it's obvious it's probably been more days than he is letting on, as this is a man who always tells me something happened "yesterday" when it was 2 or 3 days ago. And then he says: "Well, the prescription bottle said I can take it as needed!" I told him he definitely needed it. Can you hear me silently screaming and banging my head against the wall? The plan is for him to go see about getting it refilled tomorrow. Gee, maybe if he doesn't, I can go get some "happy pills" for myself, and then I won't care if he's agitated, mean and impossible to live with. What a wasted day!

McAllen teacher dies after donating kidney to her mother | mcallen, donating, kidney - TheMonitor.com

2011-02-13T20:23:00.004-05:00

McAllen teacher dies after donating kidney to her mother | mcallen, donating, kidney - TheMonitor.com

I have posted the link for the article here. One thing to note: the article says the donor underwent a kidney transplant, when she actually underwent a nephrectomy (removal of her kidney) so that it could be transplanted into her mother. As a living kidney donor, I have to wonder how such a thing could have happened. Although death of a donor is very rare, how very sad for this whole family! Would like to know more about what actually happened to this woman . . .

Drastic measures

2011-02-12T22:22:00.001-05:00

Ellie wrote about her husband:

You cannot know how much having someone "out there" helps. We did get an answer to the incontinence. Seems that his last artificial hip (gone thru 3!) has moved and broken a screw and is now into his pelvis. We have to go to a higher medical facility in our state and they are talking about amputating his entire leg, hip and possibly part of the pelvis that has been damaged. It seems that when he lays down, the ball part of the joint pushes his bladder and is wreaking havoc. I do not know what to do. He will be using a wheelchair after the surgery for the rest of his life and our mobile home is too small for him to even get into a bathroom. Does anyone have any suggestions about how to get out of a home and into one that will accomodate a wheelchair when your credit has long since collapsed with all of the catastrophes? Funny, I have friends writing to Oprah to ask for help...somehow I don't think that's gonna work.

Ellie,

I am posting this just in case someone has some suggestions or "connections" that I unfortunately do not. Wish I could do more. My heart goes out to you, as it seems things just keep getting harder for you! This surgery sounds extremely drastic, and more than a little scary. If it were my husband, I would be asking a lot of questions about other alternatives, and probably also getting a second opinion . . . all of which I know is hard when time and money are in short supply. I know there are also (motorized?) wheelchairs out there that take up less space, that I think Medicaid/Medicare would cover. Don't know if that would work in your mobile home?

Does anyone else out there have suggestions or connections??? If so, please share.

Frequent Falls and Bruises

2011-02-09T19:34:00.000-05:00

Hubby has been using a wheeled walker with a seat off and on the last few days. Finally decided to try it after another fall that left him with a nasty bruise on the back of his thigh, and a painful hip. Don't know how much of the falling is from spinal stenosis, how much is from neuropathy/lack of feeling, and how much is from the low blood pressure that hits him every time he gets up from a seated position. My feeling is that it is probably a combination of all three.

I have already told him he needs to be more careful, because if he falls and breaks a hip, I won't be able to take care of him at home. The thought of that scares both of us, and I'm also wondering at what point I will no longer be able to leave him alone for extended periods of time. Will I be able to get someone else to watch out for him when I am working, or if I want to take a trip? Traveling has gotten so difficult, we haven't really attempted it together in the last few years. Scared for him, but also for me too, as I'm thinking my world could get a lot more limited as this progresses and he needs more care. Am I selfish for feeling this way?

Also, prayers go out to Wife of a Diabetic, whose husband continues to struggle with many complications in the hospital. Wishing them both all good things!

Welcome to a new blog reader!

2011-02-04T22:23:00.001-05:00

I got 2 lengthy comments from "ellefsonsk" (Ellie) yesterday. It was actually one entry, but she ran out of room to say all she needed to. I have posted it here in its entirety, so that it will not be "lost" just in the comments, as her story is worth telling, and not "too long" at all. Welcome! Hope that this blog and others will be a source of information and strength to you, and anyone else who happens to find it. By the way, Wife of a Diabetic gave me the strength and courage to start my own blog, as she let me and so many others know that we are not alone! The following is actually addressed to all of us out there who are blogging away about our crazy lives . . .

ellefsonsk has left a new comment on your post "Fighting my own depression":

Dearest wives--my Mother sent me this feed and I cannot tell you how much I appreciate having somewhere to see that I am really not as alone as I thought...this post may be too long for you to read and that's ok, I just need to have somewhere I can say what is in my heart...
I am 44 and married to my second husband who has been Type I diabetic for 40 years (he's 53). I learned quickly how to help during the lows and to calculate the insulin needed plus make sure a potty was close by for the highs--the pump helped some when he got that some years ago. I had no idea the path our lives would take and do not recognize this man I am now married to, nor do I recognize myself.
11 years ago we decided to try and have a baby together--I have a daughter from my 1st marriage and her father is a total deadbeat. My husband was an awesome dad and we entered that journey--ended up with infertility due to diabetes and used a sperm donor. After many months we did conceive and were filled with great joy! At that time my husband stated having lots of stomach trouble--severe diarrhea and heartburn. On the same day we got to see our beautiful little boy on the ultrasound for the first time we were told that my husband had cancer. They removed 98% of his stomach and didn't need to do chemo or anything else so thought we were in the clear...the post-op infections began and nearly killed him. I was pregnant and living in another state from all of our family. With numerous hospital stays and constant IV's that I did at home he got better and went back to work after 4 months. His employer promptly fired him for failing to keep up his charting--he was a therapist. Tough to do when you're not there but nevertheless it was terrifying. We lost our home, our dignity and too much to list and came back to our home state where he was able to get an even better position. After 5 years there he developed a yet another very rare diabetic complication called autonomic neuropathy. His BP crashes--bad! December of 2009 he got up in the morning, BP dropped to 50/30 and he passed out and broke his hip on our kitchen floor, in front of our little boy. We have had 13 hip surgeries to date and the passing out issue is every day. He falls constantly and I pick him up or catch him as much as I can. Our son ended up in therapy because he thought it was his fault--he was 9. My husband has had to retire from his job because of medical issues despite little retirement and still having 2 kids at home. We will never recover from the financial strain--doesn't seem like a strong enough word--is financial terror acceptable? From our 5 bedroom house we now live in a mobile home that is falling apart and no one but me to try and do everything.
Must continue on another post....
Sorry wives--just had to get it all out and too long...
Last week our son came home from school to find his Dad unconscious on the floor while I was working at my part-time job--with a college degree, it is all I can afford to be away from him. Little guy knew enough to test his blood sugar--it was 27. Happens alot when I am not here to remind him or do it myself.
I have a very strong faith and know that God has gotten me through all of this and yes, I usually am the one with a smile and some how find the strength to laugh about it all but just feel so sad, angry and resentful all the time. At 44 I know my life is over--for the next 30 years I will have to take care of my husband in every way.
I read the comment about sex going away and can certainly relate to that--not sure I'd have the energy anyway. Our latest issue is incontinence--every time my husband lays down, he loses control of his bladder so I spend most of the night changing depends, sheets and underwear. I know how hard that is for him but he falls down if he tries to do it himself and he is scratched and bruised from the bathroom floor so I do this as quietly as possible and without complaint to try and help him with the emotional aspect of that condition. Urologist can't seem to tell us anything...
Thank you ladies, from the very bottom of my heart for giving me a place to vent and to not feel so all alone.
God Bless You.

All this and kidney failure too?

2011-02-04T22:08:00.000-05:00

My heart goes out to Wife of a Diabetic. After undergoing 2 operations 2 days apart for spinal stenosis, and dealing with gross mismanagement of his insulin by the medical profession in the hospital, his kidneys have failed. Please see her post at: http://wifeofadiabetic.blogspot.com/2011/02/complete-shut-down.html May she know that she is thought of and prayed for tonight, as well as her husband. Can I really say more?

Best wishes to Wife of a Diabetic and her husband

2011-02-03T20:02:00.000-05:00

Wife of a diabetic has been much in my thoughts and prayers the past several days. So worried about things turning out right with her husband's back surgery.

One hugely upsetting aspect of all this is trying to make sure that her husband gets the insulin dosages he needs to have while hospitalized. Being over 300 all the time is not acceptable! What is bad is that often nurses know it needs to be different, but they are at the mercy of the doctors, who dictate dosage amounts. And if the doctors don't understand how it all works . . . well, that's where the trouble starts! Really hope that Diabetes Wife was able to snag hubby's doctor and actually get him to listen to her regarding his insulin requirements.

Making this happen is no small task, and I am sending all the well wishes and strength I can possibly send her way, as I have been there/done that many many times. NO ONE should have to go through this, on top of whatever other health issue a diabetic spouse is dealing with at the time . . . but apparently, it happens all the time. WHY?!

Hang in there, Diabetes Wife. We are all rooting for you!

Extremely high sugars

2011-01-30T15:56:00.002-05:00

Got together with friends yesterday, where there were all kinds of goodies to eat. Wasn't really paying attention to what my husband was eating, as I've decided it really is HIS responsibility to monitor this. At some point, he started loudly talking nonsense, and everybody is looking at him like: what the heck? A little later I quietly asked him if he had checked his blood sugar recently. He did (wow, without an argument this time), and then announced to me that it was 585! He didn't seem all that concerned about it, and he said his insulin pump was indicating not to take any more insulin, as he still had enough to "cover" what he had just eaten. How can this be? I honestly can't understand how or why he would let it get this out of control.

What really makes me crazy is that this is not an isolated occurrence. Almost every holiday and every get-together, this happens. If I say anything to him about it, it always backfires in anger towards me, so I choose not to most of the time. Yesterday, I felt lucky that the temper didn't escalate, as it so often does when his sugar is so high. I hate to think of all the damage he is doing to his organs every time his sugar skyrockets like this.

So far, today has been an all-day "sleep-a-thon" for him, as really high blood sugars always knock him out the next day. Oh well, at least it's quiet!

As a living kidney donor, how much do I need to worry about complications down the road?

2011-01-26T20:26:00.006-05:00

Please see:

http://www.livingdonor101.com/

Have included a link here for living kidney donors. The website tells about possible complications from only having one kidney. Some of it is pretty scary stuff, and I am wondering how much of it I really need to worry about. When I asked about later problems for donors before I donated my kidney to my husband who had been on dialysis for many months, I was told only: "Sometimes, donors are prone to high blood pressure later." That was it, end of story! As a person who has always had low blood pressure, I figured I would be fine.

Oh . . . there was also something said by an "advocate" about some donors who had temporary partial numbness in their arm, but that was made light of by the surgeon later when I asked about it. After waking up with a totally paralyzed arm from a brachial plexus/nerve injury because of the way I was positioned during the laparoscopic surgery, months of painful therapy and many months of painful recuperation, I would tell anyone who is thinking of doing this: Do lots of research, and then when you think you know it all, do more! If I had it to do over again, I would go for an "open" surgery instead of the laparoscopic procedure. What's a big scar on your midsection compared to not being able to use one of your arms/hands? When I asked her, the advocate had told me that was the way she would go, and then her opinion was dismissed by the surgeon when I asked him about it. Had I only known! What a scary experience, as it was not known at first if I would regain use of my hand and arm or not.

Thank God, I regained most of the use and feeling back in my arm and hand, but it will never be at 100% again. Yes, my kidney saved my husband's life, as he was ready to quit dialysis, rather than live with being hooked to a machine for 4 to 5 hours, every other day . . . but we also did not fully appreciate all the side effects that all the medicines he now has to take would have on him. That is, not until later.

What really angers me is that the hospitals and doctors who do the transplants have no protocols or follow-ups for the donors after they harvest the kidney. When I told one of them later that I thought this was crazy, they had little to say on the matter! In the meantime, I found a personal doctor/physician's assistant who appreciates my concerns and does a yearly work-up for me, also including anything that might show problems with my remaining kidney. So far, so good.

I would love to hear from anyone who has had a similar experience . . . anyone out there?

What the . . . ?

2011-01-24T18:18:00.000-05:00

Hubby came home from a doctor visit today, and informed me he has been taking twice the amount of antidepressants that he had been prescribed. He only discovered this when he went to get it refilled, and they told him he should still have a lot left. His comment to me was: "No wonder I've been so calm." It seemed like news to him when I told him he had been anything but . . . when he hasn't been sleeping, that is! He then told me how the psychiatrist had told him to take the pills, which wasn't what he'd been told at all, as I was at that appointment when the meds got increased. When I told him that, he then countered with: "Well, I didn't read the directions. It's not my fault." WHAT? How is it not his fault, if he didn't bother to read the dosage directions? Gee, guess I should know better than try to reason with him! Will be interesting to see what kind of emotional roller coaster he will be on when he suddenly halves the dosage he's been taking . . . I can hardly wait! God help us both.

This angers and scares me on so many levels. Makes me wonder if he's messing up his other medications. Am I now going to have to monitor this?

Time for creating

2011-01-24T08:42:00.000-05:00

Spent some time this weekend crafting. Always makes me feel better! Have several friends with birthdays coming up, so am creating some gifts for them. Having fun trying out some new techniques, which is a good way to get my mind off other things. Thinking I need to find the time to do this more often, as I am not "just" the wife of a diabetic husband . . .

Thank you for the encouragement!

2011-01-21T18:46:00.000-05:00

Lynn Barry wrote:

It is hard to think rationally when you are dealing with an irrational person...your out of control sugarwise spouse...keep doing the girl outing things and reevaluate what you want from the relationship that is obviously causing you so much confusion. Sounds like a dose of reality but I have been there and until my hubby was put on antidepressants and retired and started working on getting the diabetes and all the other health problems under control I was wondering what the heck just happened all the time too. HUGS and LOVE. You are rational, he is not. It is NOT you! LOVE YA.

Lynn,
Thank you for the encouragement. I really wish it was that "simple" sometimes. As it is, my husband is already on antidepressants. They seemed to work like a magic bullet for awhile, and then didn't work anymore. His doctor increased the dosage, and now he seems to be worse! Will be going to see the person who prescribed these before too long. Hopefully, she has a better answer.

As for retirement, he has been retired for the past several years because of health complications. This probably does not help his depression, as he was forced into retirement at a young age, and most of his friends are still working.

What do I want out of this relationship called marriage? At least some occasional shared joy with the man I married . . . I often wonder where he went. Never thought that I could be this lonely while married. I would like him back. Am I asking for too much?

However, thanks for the "rational" comment! Sometimes, I really need to hear that! :-)

Fighting my own depression

2011-01-20T02:03:00.000-05:00

Realized I haven't posted for awhile. Have just been very down. There have been a couple social events that hubby and I have gone to, and things have not gone well. I am so tired of the sudden "turns" in his demeanor when he is too high or too low (or maybe sometimes it's just his personality?), and the ensuing arguments about stupid, meaningless stuff. Later, he acts as if nothing has happened, and there is never an apology. His denial just makes me more angry!

Got away for a few hours after work with a girlfriend to go clothes shopping and get dinner afterwards last week. It felt so good to do this, as there was no drama involved with hubby. She and I agreed we need to do this more often, as it is good for both of us.

But of course, I always have to go back home, and there is always another argument about something that makes no sense. Sometimes, I don't know who's being mean to who, as it just makes me so exhausted, and I want it to end. I often end up holing up in my bedroom or in my "woman cave" in the basement. No, this is not the way I envisioned my life!

To my "sisters" out there: forgive my negative vibes, but hopefully you understand.

To Diabetes Wife: May everything go well with your husband's surgery today!

Doctors, diabetes, and spinal stenosis

2011-01-03T21:37:00.000-05:00

Diabeteswife commented in part:

"Doctors do not understand diabetes at all. I am positive my husbands spinal stenosis is from high blood sugars. They think it's genetic. Give me a break! They said the narrowing of his heart arteries was genetic. I'll bet my own life that it is due to high sugars. I would love to meet just ONE doctor who really understood the entire process of diabetes, age, and neuropathy and how much impact it has on the internal organs as well as the external organs. But in all the multitude of specialists he has been to, I haven't met that person yet!"

You are right: most doctors do not understand! High blood sugars cause organ damage, so why wouldn't they cause damage throughout the body? I even had an endocrinologist (who specialized in diabetes) tell me that out of whack sugars have no lasting effect on the brain, which I really can't believe. As for the spinal stenosis, I know of several people who have it, and ALL are diabetic! Can't tell me that's all genetic.

My big question is this: with all the people/patients who are now diabetic, why is not more taught in medical and nursing school about this disease? Especially since it is becoming more and more common! When hubby is hospitalized, it is always a nightmare, as no one seems to know what to do to maintain his blood sugars. So then we have crazy blood sugars to deal with on top of whatever illness he is in the hospital for to begin with. This only makes him sicker. It is my hope that now that he is on a pump, he might be "allowed" to monitor himself with any future hospitalizations, as he does a better job than anyone (doctor or nurse) who is supposed to know what they are doing. Thanks for your input and support; every little bit helps!

Not the man I married . . .

2011-01-02T12:51:00.000-05:00

Tom's Wife recently made the comment that our husbands are no longer the men we married. It also sounds as if some of us who are blogging about our diabetic husbands are in their 50's, which is also the age range of hubby and me. Sadly, the "not the man I married" comment is so true! Where do I start?

As his physical limitations have gotten worse, so has the depression and the sleeping for long periods of time. When he is up, the conversation so often revolves around his physical problems, and how he is "sorry" he didn't get anything done (again) today. Sex has gone by the wayside. He likes to think that the meds he has been given to "fix" this problem help, but they don't. Going anywhere is a crap shoot, as he can't walk very far, and I also I never know when he will have a "melt down" because his blood sugar is too high or too low. We started the New Year with him literally screaming in the car at me on the way home, because I told him (once again) he had embarrassed me in front of friends with inappropriate, angry comments. He didn't want to hear that, so had to tell me everything "wrong" I have ever done . . . happy freaking New Year! I gave up and quit talking, as it was going nowhere fast. This is NOT the way I want to start 2010, but trying to reason with him (even when his sugar is within normal limits) has gotten very difficult. There seems to be so much he just doesn't "get" anymore.

I am becoming more and more convinced that his brain has become damaged from all the high (and also maybe low?) blood sugars. I also wonder about vascular dementia, but I have yet to get any of his doctors to do an expensive MRI to look for this. I do know that he forgets much of what I tell him, and will angrily insist later that I never told him information that comes up later in conversation. He also constantly disagrees with me about something I just said, and then will tell his version of it in different words, but it means the same as what I just told him! I honestly don't know if he comprehends what he hears me say, or just doesn't listen to me anymore. Dealing with the constant opposition is so exhausting.

I really have tried over the years to understand what it must be like to be in his shoes: to have a disease which is hard to control, and to always feel like you have to monitor. Having your kidneys fail and having a transplant, then having to take all the heavy-duty meds in order not to go into rejection. It must be terrifying for him. At the same time, I want him to try to understand my concerns as well. I feel very much isolated in that regard, as it always seems to be all about him. His problems are always bigger than mine, if I am sick he is always sicker; I could go on and on . . .

In the meantime, I have my own bedroom, which has become a haven of peace for me, with plenty of good books to read when I can't sleep. With so much going on, sometimes sleep eludes me even though I am the only one in the bed. Now, if I could just turn my mind off at night, I'd be all set.

Thank you, Tom's Wife, for reading and responding. It really does help.

Depression, or . . . ?

2010-12-30T21:23:00.000-05:00

Another day of sleeping all day for hubby. I don't understand how he can do this. I think he went to bed about 3 or 4:00 this morning, and is still not up at 9:00 tonight. Woke up long enough to take his pills when I brought them to him . . . again! At this point, chances are good he will sleep all night and hopefully get up tomorrow. I'm not sure if this is a side effect of all the meds he is taking, or if it is depression. My guess is a combination of the two. At any rate, he doesn't seem overly concerned about it, and at times almost boasts to his doctors that I "let" him sleep all day!

Have gone to countless doctors, psychiatrists, etc., and no one seems to really put a name to it. Maybe because they don't know, either? Don't know if antidepressants he is taking are making it worse. At the same time, I got a lot done today, without the grousing over nothing I got from him yesterday. So . . . do I feel glad I had a day of peace, or concerned that he is sleeping his life away?

At any rate, I had to move to my own bedroom quite some time ago, as the weird hours and his jerking and kicking kept me awake. I couldn't stay awake/function at work anymore. All of this makes me so sad, as I really wish that we could enjoy doing more things together, instead of almost always apart. At this point, even when things are going all right, I find I am on guard, as I don't know what will touch him off, and whether his sugar is high or low. I am thankful that I have work, good friends, and so many interests that I am able to pursue on my own, or I don't know what I would do!

Please help me find your blog

2010-12-28T10:05:00.000-05:00

Any of you who are following me out there, if you are dealing with similar issues and have a blog about it, please share your URLs (internet addresses) with me. If we can support each other, all the better!

Post-Christmas crash

2010-12-27T23:46:00.000-05:00

Hubby slept from about 4 A. M. this morning until 7:30 P. M., when he finally got up. He is now parked in front of the TV, where he will probably stay all night. When given the choice, it is almost as if he prefers to have his daylight and night hours mixed up. As for me, I had a nice quiet day for the most part! I am now in my basement "woman cave," which has become more and more of a necessity for me, as I can get away from it all.

He managed to more or less hold it together through the weekend, although his sugar was well over 300 on Christmas day, which meant he talked very loudly non-stop most of the day. No one else could get a word in edge-wise. I was exhausted just dealing with the non-stop loud babbling. Didn't want it to escalate into a fight, so after quietly asking him to stop talking so much and getting absolutely nowhere, I gave up. So many holidays are like this, with the different foods, etc. He almost always underestimates the insulin he needs for all the goodies he thinks he has to consume.

It has been interesting with his "falling" because of the spinal stenosis: when people were visiting, he managed not to fall the whole time. Makes me wonder if his dramatic falls are partially his bid to get more attention from me. I hate to think this, but do have to wonder.

I did briefly wake him up in the early afternoon, as he had taken NO meds yet. This angers me greatly, as we have had many heated discussions about him being more responsible with his medications. After all, I did give him his transplanted kidney, and really don't want to see him lose it to rejection! He seems to think it's my job (at least when I'm home) to make sure he takes them! God knows when he takes his meds when I am not home. He screamed out in pain (his back) when he moved just a little in bed. Again, have to wonder if he's being over-dramatic to make a point, as he doesn't do that either when people are over, or we are out.

More trouble walking

2010-12-23T19:35:00.000-05:00

Things have been okay the last few days, with no angry outbursts. Nice to have the peace at home with Christmas approaching. However, hubby has had more and more trouble with dizziness and/or falling. Not sure how much is spinal stenosis and his legs giving out, and how much (at least the dizziness) is caused by circulation problems. He has already contacted the VA about getting a wheeled walker with the seat. I know it's getting bad for him, to admit he needs the walker! Really concerned, not only for him, but also for me . . . and also feeling selfish for feeling this way. How long will it be before I can no longer leave him alone for extended periods of time? He has talked to more than one doctor about possible surgery to fix the stenosis, and no one wants to touch him because of all his other health problems.

First post, or sleeping all day, up all night

2010-12-19T08:31:00.000-05:00

I have been reading 3 blogs of wives of diabetics for awhile, especially Wife of a Diabetic. Diabetes Wife, you changed my life, as I was beginning to wonder if I was the only one who was struggling with this crazy life. It is my hope that this blog may help others, and that I will also get input from others going through similar circumstances.

When left to his own devices, my husband has literally been staying up all night, and sleeping all day. What's with that? He says he is in so much pain from his spinal stenosis, that he can't get to sleep when he would like. Most days if I am home, I let him sleep, as at least then I don't have to deal with the sugar highs and lows, both of which make him very nasty/verbally cruel towards me. Am I horrible, to actually enjoy the days he stays in bed?

I never know when the outbursts are going to happen. As Crazy Wife mentions, how are you supposed to know when it is okay to talk to your husband??? I was informed by him the other day that when I "know" he is high, I should know better than to question anything he does! Things will be going along okay, when suddenly, bam! He is out there and screaming at me for something that makes no sense. I am starting to feel like a kicked dog. Don't enjoy going on trips with him anymore, as his mobility is an issue when we are out of the car, and his screaming at me when I am trying to drive is even worse . . .