Sunday, July 05, 2009

Jim wrote:

Is there a little inconsistency here? On the one hand, you complain about non-compliance, but then you say:

"But for me, the worst thing is the 800+ pills that he takes 4 times a day. Ok, I am exaggerating, but you get the point! Each and every one of them puts a stain on his kidney function and is weakening what little he has left to use. And he just doesn't get that. Because they were prescribed by a doctor."

I have Type 2 diabetes, and my doctors call me noncompliant. I refuse to take any medications, because of severe side-effects that I have experienced. Instead, I am following a very rigorous (and unusual) diet, which seems to be working better than any medications.

I would distinguish between two types of non-compliance.

There is the non-compliance as the term is used by doctors, meaning that you don't follow their orders, given after a very brief exam. Those short exams followed by one-size-fits-all prescriptions are worthless at best, and life-threatening at worst.

Then there is the non-compliance when you don't do what you know to be right, based on your own knowledge of your body. I am very compliant with my own sense of what I need to do, which is very different from what the drug-pushing doctors say.

Well, then, there's another kind of non-compliant. He takes all his pills regularly. That is the reason why he can eat whatever he wants (in his mind) and the reason why he doesn't have to exercise or test his blood......all those pills take care of him. As long as he takes his meds....he just doesn't need to do anything else. He can eat anything he wants, including that bag of chocolate followed by a bag of potato chips! He can deny that he ever has a low or a high....because he is taking those pills!

What he doesn't seem to "get" is that with a kidney function of 20% - those pills are hard on him. He could do so much just by testing, eating healthy, exercising just a little....but he's not going to change.

For me, being compliant would mean that you do everything in your own personal power (diet, exercise, test) and then you take the meds that your doctor prescribes based on your compliant behavior.

But I think when meds are prescribed because you fail to take care of yourself, then you are non-compliant.


Another post:

geez, I just want to smack him. (not really that's just an expression) And while I understand, I hate that you go through that whole thing of thinking through why he is says what he says. I wish that you could just have the peace of mind to think, "oh well, his disease is causing this, I'd better get out of the way."

but of course, so much easier said than done. I still get in the car with mine -- and realize 10 minutes into the trip that his sugar is so low he shouldn't be behind the wheel. Last night was a perfect example. 7 pm, going into the city for dinner, having a nice conversation, I mentioned that turning at the next corner might help considering the way traffic looked ahead. He ignored me and then was confused about how to get to the restaurant. It took me several minutes to realize the issue. (I know you are thinking after all these years, I should know the signs by now, but stupidly I continue to trust him!)

Anyway, I get very calm and just try to have him pull over so I can drive. But its not easy because he likes to drive in the left lane so much. But once again we made it out safe. his glucose reading was 51. but since nothing bad happened, his assessment is that I'm overblowing the situation by being angry. or when he realized the futility of that he lied and said he tested before we left the house and his glucose read at 90 something.

there just is no winning these arguments.

and we go on......

Tom's wife

by the way, I have a question for you, have you considered moving this to a site where everyone can just chat with each other as they wish? or do you know of one? clearly there are lots of people who are responding to you on this topic. but I haven't found a site that offers such a chat. it seems like you bear a burden of having to be the keeper of all of these responses. would it be easier for you if there was a more open 'forum'. if that's the right word? I'm not a very good web person, just asking. thanks.

First, I laughed about the driving incident. It is amazing to me how fast blood sugars can drop. And how stupid I can be and not recognize it. I just wonder if anyone has ever timed it? Like can they be 90 and go to 40 in 2 minutes? I swear they can! But then, getting him to test would be impossible. Driving with a low is totally scarey. I am doing more and more of the driving...because if I'm not driving, I'm praying like heck! LOL!!!

I wish there was some early warning system - a bell that went off - something that would alert me to the fact that he is heading down. I'm paying more attention to mood vs eating - how long has it been since he last ate when he starts to get grumpy. But I swear, I don't even think about it half the time. Sigh.

As for another forum....someone started one once, but it just didn't get any response. I think the problem is that you get angry "compliants" who rant and rave. Notice, I don't allow their posts here. Oh yeah, they still send me nasty little emails and I just ignore them. My philosophy is that if you haven't walked a mile in my shoes....don't try to give me advice!!!

I had an artist pal here the other day and she is diabetic. She said my descriptions of life with my hubby were interesting and she agreed that she did not always know when she was going into a low....nor could she remember what she said while in a low. That was encouraging to me.....someone who has diabetes and is open enough to admit they don't remember what happened when they went low. For the most part, the diabetics who write to me deny having lows, and get angry because I use the word "diabetics". If you haven't noticed, I sort of call a spade a spade! :o)


My "rant" for the day. He's been home 3 days and I've mopped the floor 3 times because he spills stuff all the time. And you think that's not related to his diabetes? Of course it is!!! He has neuropathy in his hands so bad that he can't close his fingers any more than about 2" apart. He can't pick up a fork any more. And half of what he tries to pick up slips right through his fingers and onto the floor. So I mop. But it sure was nice to have 3 weeks off from the daily grind. I feel like I've re-entered "maid" up the mess. Don't even bother to suggest that he mop the floor after himself! Not going to happen in this lifetime!

One more week and I'm gone traveling and teaching art for 3 weeks. I can survive anything. :o)



Anonymous said...

Geez, I don't know where to start... First of all, I do NOT ride in the car with my husband, I do all the driving. Diabetes effects the vision big time. When his numbers are off (all the time) his vision changes ... scary stuff. My husband eats whatever he wants, does take a ton of meds, is on dialysis. Kidney failure can happen almost overnight. As far as monitoring meds, you have to monitor meds, food, exercise and overall common sense. If you think it is bad now, what until dialysis. You can only have 32 oz. of liquids a day (includes all liquids)... It is a nightmare!!!!!!!!!! I clean my floor all the time. Pills that he doesn't see that he drops, just dropping things because he can't feel his hands. It is terrible. when you go on dialysis, dialysis only removes so much poison, it does not remove phosphorus, potassium or calcium, so you take so many extra pills. And of course, if you are "non-compliant" like my hubby, you end up with complications that are unbelievable. My hubby has been in a cast, "crow walkers" and now "special shoes" because both his feet and ankles have collapsed. So there is no party going on in my house... but he still eats chocolate, lunchmeat, and all kinds of sugared drinks. That's what I call non-compliance!!!!! If I can say anything to all that just think this disease will just "go away" ... it doesn't! Take your blood count, don't eat or drink what you are not supposed to have, exercise and just take care of yourself. It is a living hell for you family if you don't. We have 5 kids (including a child with special needs) and life has become so difficult. The sad thing is that it could be so much easier if only my hubby would leave the sugar and lunchmeat alone. Obviously, it has been a really challenging weekend at best. It does feel good to know that others can relate. I just wish that people with diabetes would wake up and understand what they are doing to the people who love them with all their hearts. When I look into my childrens eyes, the pain of what their father is doing to them is almost unbearable. Please look around at the ones that you love and stop and think ... Life is too precious ... Love us back as we love you!!!!!!!!!!!!!!!!

VPJanetL said...

You know, I do sometimes wonder if there is an element of the fact that we are talking about men -- you know the Y chromosome.

I never thought of my husband as the macho type but he is a caretaker and he really does need to be in charge and he likes to be the car-driver and (ok, I'll stop, you get the idea)

Now that I spent the weekend on the internet looking for on-line opportunities to "chat" and seeing your response - I get it. first, some people are SO defensive - they don't understand that we aren't really saying these things so much as a criticism of them but as a place to go to share our feelings and get validation for what we feel. Of course, we think they are wrong -- because so much of what they do, well is wrong. But that's not the point of this space -- its really to share.

I looked on one website (I won't name it you probably know) and they are all about being "kind" to each other. Well that's all well and good but it really doesn't help when you are desperate and scared and think you are the only woman in the world who thinks that she is the most horrible being because she can't handle one more time when her husband hits bottom.

and we do appreciate you filtering out the screaming "jims" who want to make us feel bad. we are not bad, we are burdened and loving and caring and we try so hard to do the right thing.

we know its difficult for them that's why its so difficult for us. otherwise it would be easy for us to leave when they abuse us so terribly. who else would put up with the type of emotional garbage we get?

Now I'll stop and leave you alone.

You are terrific I wish you a wonderful trip. Tom's wife.

Lyrehca said...

I know your husband would probably never consider anything like this, but there *is* a warning system that gives you an alarm when you're heading low (or high): the Dexcom continuous glucose monitor.

It would be interesting for your husband to do a trial run of one for a week to see exactly where his blood sugar is all the time.