Comments

Tonight, I had 3 comments on previous posts and I thought I would post them all here. Why? Because I think it's really important to share what other spouses of non-compliant diabetics write.

Look at what I just found!!!!!!!! Thank you, so much, for starting this blog and, to each poster for sharing!!!!! I have been married to my Type 1 diabetic, who was diagnosed at the age of 19, for nearly 25 years. The marriage has had it's times of hell - that is for sure. The anger; the noncompliance; refusing to even talk basics about the disease, hiding everything he could; the affect it has had on the entire family - all very tough! Thankfully, he is more compliant than he was for the first 20 years of our marriage. What does that mean? That means that now he will test his blood when I ask him to, without being an idiot about it. Translated, he still wants to put the responsibility of following a schedule on me when he doesn't feel like doing it. A far cry from what he use to do. There use to be tons of highs and lows. We even had the department of family services involved in our life for a year or so, because he had a low while at a local fast-food chain, with our son, who was 4 at the time. The emergency room doctor was so angry with seeing him all the time, called the State on him, hoping to wake him up. It didn't; just put even more stress on me. What turned him around, for the most part? I had to have a biopsy, which frightened him significantly. The results were negative, to our relief (thank God for that!)! It gave me the opportunity to point out to him that I felt the way he had, concerning my biopsy, every time he had a low. I am thankful that he now will test his blood, when I ask, without being a jerk about it (when he chooses to sleep instead of keeping to a schedule). Of course, this means that I have to include getting up at midnight/1:00AM to get him to test his blood. I still don't always catch them, especially weekend mornings when he doesn't feel like following his regular schedule (we had one this morning). Unfortunately, he's not as pleasant with his children (who are now teenagers/early twenties) when they try to get him to test on schedule. I've had to teach them to ignore his meanness during those times - to stick with what he needs to do (basically teaching them to disrespect him - to make sure he does what he needs to do to care of himself). He's not a happy man; yelling frequently; lazy; eating whatever he wants, even with high blood pressure and cholesterol and some sort of nerve issue that appears to be affecting the left side of his body. Yep, I know he's depressed. He goes to the doctor only when he needs a prescription refill. I've had the medical community behave as though my concerns were of no value: it is my responsibility to make sure he takes care of himself; my concerns are not legitimate, etc. I've rambled enough. It is good to have a place to share with others who walk the walk.

I, too am so grateful for each post that is shared here. I don't feel so alone. I know there are others going through exactly the same thing. I agree, my hubby is more compliant now than he has ever been. I think it is a necessity. They have to be. Probably because of the pain and if they don't tell the doctors what they are/are not doing, they won't get those prescriptions refilled!

I think my husband is terribly afraid of being alone when he dies. Well, in the moments when he remembers what is going on in his body. Like when we were in the river bottom and he had that angina attack. But how soon he forgot and yes, he still has not been to see the doctor over that one.

I felt like you were describing my husband while I was reading you post and it grieves me that there is another woman suffering the same thing - yet at the same time I find comfort in it. How sad is that?

I've been married to a type 1 diabetic for nearly 30 years. Tonight he had a very bad insulin reaction I couldn't pull him out of. I had to call the paramedics. Not the first time, but usually I can take care of it myself.
It's been 30 years of hell for both of us - endless low blood sugars, poor sleep from checking on him throughout the night, not to mention the rigid life that comes with it. It's not his fault. I know that. He does work hard to maintain his blood sugar. He hates putting me in this position.
But tonight, I could take it no more. I broke down and cried for 15 minutes. I consider myself a strong person, but I don't have much strength left. I feel so guilty that I have these feelings. What do you other spouses of diabetics do?

First, is he ok? It's interesting to read that your husband seems to be compliant, yet still has the same problems. You know, crying for 15 minutes is just fine. You deserve it. It is our body's natural way of relieving itself from stress....and any time you have to call a paramedic - there's stress involved. Don't feel guilty for a second! It is perfectl natural to cry.

What do other spouses do to relieve stress? I'd venture to guess that most of us cry at some point. I lose myself in my art. I used to walk for an hour or two - however long it took for me to get rid of the stress. There was a period where I cried at the drop of a pin - I was so stressed out all of the time. We probably all find different ways at different times. But again, don't feel guilty. The body has to get rid of the stress. If you let it build up inside, then your immune system will lower itself and you are more likely to get sick.

So, we women, it is so hard for us to love people when the setting is not the way we learned it to be. I'm having trouble putting this into words, but I'll try. Most of us learned that its hard to tell your children no sometimes when they look at you with tear-stained eyes, but we do it anyway - because it is the right thing to do.

But, we never, in our wildest dreams, expected that we would be put in a position of having to show the same type of "tough love" to an adult man, whom we married, expecting it to be a sort of an "equal" relationship. And not just tough love about taking out the garbage or changing diapers. But about his life or his health.

Here is my life-changing story. A number of years back, I was getting ready for work one morning, and I received a phone call from the state police asking if I knew where my car was (not my husband - my car). It had been involved in a hit and run accident, going the wrong way on an interstate highway entrance ramp, hit a few cars, and then was driven away. Everyone assumed the driver was drunk. And they were angry! There was a pregnant woman in one of the cars. No one was hurt, but they were looking for the car and the driver -which had to be my husband at 6:30 in the morning!

You can imagine my horror! I explained that Tom is diabetic, was probably low, not drunk, and hopefully he would stop and call me. (this was in the days before cell phones!)

I'll cut to the end -- He did not lose his license nor did he go to jail, but he did lose his insurance and the accident in total cost us about $5,000 plus having to buy a new car. Together we lost about two weeks of work between court dates and doctors appointments.

To top it all off, his mother blamed me for the accident, because I didn't make sure that he tested himself before leaving the house and I didn't force him to go to counseling.

I tell you this long story, because it was then that I finally learned that I am not his mother, and I truly have no control over his disease or his actions. No matter what he does or does not discuss with the doctor (or his mother) is completely out of my control.

If his sugar dips dangerously low and we are awake, I will suggest he take some juice, or a beer, or that he test himself (because he never believes me). and then I leave him alone. If it happens in the middle of the night (as it often is), I'll try to give him some of those glucose gel things. I never give him a shot. the one time I tried, he hit me so hard I had a black and blue mark on my arm for weeks.!

As you all know, nagging and whining don't work. If he gets worse, I'll offer again. But if I can't tolerate watching him decline, I'll leave the room or leave the house. He either takes care of himself, or gets so bad, he eventually will take some juice from me, or I call 911. The emergency people know me now. Its not that I call often, but I do what I have to do. Tom absolutely hates it when I call them, so I only do it as a last resort. But you know what? He is stronger than me, and I can't force him to do anything he doesn't want to do. Even save his life.

when these events happen, I do feel like I have to be tough. but I don't think its "not caring". He put me in this situation. I often cry. Those 5 or 6 minutes waiting for the ambulance to arrive at 2 am is horrible - I can't tell you how many times I pace like a crazy person. they show up and test his sugar and its down to 30! How can he do this to his own body? much less to me?

but of course, just ask him, its never his fault.

maybe you think I'm hard-hearted, and maybe I am. I don't think so, its just that after 25 years of living with this, I'm coping the best way I can. I have my own issue and try to deal with them with as little impact on others as possible. why can't he do that also?

Heavens! you are NOT hard-hearted!!! But other than that, I don't have the answers to your questions. I can only guess. Why does he let his sugar drop to 30? Laziness? Lack of self-respect? Secret desire to die? Those are the very thoughts I seem to have when my husband goes so low. Of course, those thoughts come after I panic, freak, call 911, pace, worry, have an anxiety attacki......LOL!!!

Why can't they deal with it in a quiet, non-intrusive way? Hmmm....I think that's impossible and I think I know why. When you go low, the body's needs adrenaline to increase insulin. So (probably subliminally) the diabetic has to create a situation that forces an adrenaline rush. I've often considered getting a hammer out and just smashing a couple of his fingers!!! Well, think about it - that would definitely create an adrenaline rush, get the glucose heading up again. I think they create drama, they yell, they get angry - often not really understanding it or able to control it- as an unconcious effort to increase sugar.

I've started just to allow the argument to build. The sooner he gets insulin flowing, the sooner he will come out of his low. So within reason - I will on occassion allow him to continue down that hostile path. But more often than not, I quietly tell him he doesn't have permission to yell at me, or talk to me like that.....and then I will leave and go shopping, go to a movie, do whatever it takes to get myself out of the house, away from his "mood". Like you said, we can't fix them, cure them, heal them, make them better, change them. And I have learned that there are times to just say, "I can't live with you right now" and then walk away for a few hours or even a few days.

My MIL would blame me, too.....but I have learned over the years that as his mother, she subconsciously created a dramatic moment in their lives whenever he was going into a low. My FIL is also diabetic and she is extremely skilled at creating dramatic moments exactly when he goes into a low. It is an interesting dance to watch. She has trigeminal neuralgia and will have horrible pain the moment he starts to go low. He panics, determined to help ease her pain and you can almost see him go from a low back to a normal within about an hour......which is precisely the lengty of one of her attacks. When he is gone, she will go a full day without an attack. I'm not even sure she is conscious of the "dance" they do!

While I refuse to become such a drama queen - I've definitely considered using that tactic if I need to!

While there is an element of comfort in knowing that I am not alone in this struggle.......my heart goes out to each one of you because I truly know and understand what you are going through. Do not allow him to take an ounce away from your self esteem! This is his disease - not yours!

DW

It's in his ballpark

I know that many people do not go back and read prior post's comments and that's why I like to bring them forward - to make sure the world understands that this is a very common thing for spouses of non-compliant diabetics. Here's a post from yesterday:

I too, have a diabetic husband (type 1). He's been diagnosed since he was 19, and is now 62. His overall health is good..no neuropathy, eye, or kidney problems. He watches closely what he eats, and tests several times a day. I am thankful for this, however despite all he does, he still has insulin reactions several times a week that leave me drained and anxious. He hates my suggestions, and interventions. Like many of you say, he doesn't remember how he behaves during a reaction. When I suggest looking into an insulin pump or going to a "real" diabetes Dr., he gets angry, and this usually ends up as an argument, where I am the bad wife, and all is on my shoulders. I had no idea I was not alone in this battle! Whining doesn't help, but knowing that there are other spouses out there that might be able to help each other with solutions, moral support, and just an "I know what you're going through" is wonderful! It is very hard to feel as though you sometimes hold your mates life in your hands. I have decided dto explore every avenue I can to help him, then, when I've done that...I'll try my best to let go, and it's in his ball park.

Trust me, you are NOT alone!!! I should have kept a log of all the comments over the years just to this blog alone! We are "alone" only in the fact that the medical world does not acknowledge that this disease has a HUGE impact on the entire family. It affects how children are raised. It affects divorce rates. (I have to wonder how many spouses simply walk away quietly - my husband's ex did).

And I honestly, really do know what you are going through. No, whining won't help. Being argumentative doesn't help. OK, not really much of anything "helps". LOL! But it is sure nice to know we are not alone. It's nice to hear how other's cope and survive. It's heart breaking to hear when the spouse dies. Or becomes abusive.

My wish in all this is that the medical world would wake up, start to listen, and somehow offer help. I think I had my best period when the doctor/nurse asked my husband to track and write down his blood levels 8 times a day and then she actually took the time to chart out his highs and lows. He was conscious of the impact on his mood as I was tracking them at the same time.

And I wish someone in the medical arena would actually start to acknowledge the memory loss that occurs as blood sugar levels drop or go sky high.

All that being said, If my husband was not going to a "real" diabetes doctor, I would be beyond livid. There is simply no excuse for that. So are we back to the question here.....is he in denial? Because if he is not seeking proper medical attention, then he must be in denial on some level. And if he is, then all we can do is acknowledge that is where he is and understand that yes, it really is in his ballpark.

Letting go is impossible to do because as women, we want to nurture and heal. As men, I think the general concensus is that we want to fix and make it all well. Same thing. We all love our spouses and want them to be well, or at least be on a smooth level of care with no highs and lows. Research and information do help. But bottom line, it's their disease.....not ours....it's their ballpark, their ballgame. We can pitch the ball.....but they have to decide whether to hit a home run, bat out, bat it foul....or just drop the ball altoghere. Not much any of us can do about that!

Denial

A comment I received:

I too am in denial about the suffering we are all subject too when an angry, out-of-control diabetic person is at the center of the drama (and needs to be). I keep telling myself that he is not really like this - it is the disease that makes him this way, but after a while...what's the difference? Your thoughts and actions come to define you. I am now finding that I have to develop a shell and become and uncaring to cope. And that makes me hard on my children and myself. So here we are. If I am to apply the same idea, well them I have become just as difficult to live with as a result. Sad and incompetent is how I feel. Thank you for sharing your experience. It does help.

This is just my opinion, but I think denial can last forever. I think it is a coping mechanism. But it's not just the spouse/family of a non-compliant or out-of-control diabetic - it's everyone around them.

Think about it. Their doctor has to be in denial. They don't make them chart their sugar 8 times a day. They don't ask to see the "log". They don't tell them they have put on way too much weight since the last visit. All they seem to want to do is get the patient out of the office as fast as they can.

Their boss must be in denial. I'm sure the same ranting and raving goes on at work that goes on here. He's never been disciplined. It's just called "his mood".

The sad fact is that he is exactly like this. Whether brought on by sugar levels, or his own personality - it is who he is. Yes, the disease started it. Maybe the disease continues it. But it is who they are. "the center of the drama" - oh my, what a perfect description! LOL!!!

They do like to make everyone around them feel totally inept and incompetent, huh? Haven't quite figured that one out.

Put on a shell? Well, that's one way to put it. I prefer to say that every time he tries to put his monkey on my back, I fling it right back to him. LOL! This is his disease. This is his problem. I've said this before and I'll put it here again.....I have learned to simply tell him that he does not have permission to yell at me. He does not have permission to blame me. And when his mood gets really bad, then I run to Walmart, or the grocery or somewhere....just leave for a couple of hours. Because usually when I come home - he's past that mood.

Of course I'm copinq quite well right now because he's gone! LOL! Just read my past blogs and see how many, many times I have not coped. That's when I come here to vent.

I guess I need to write one more thing here. For the past 2 months, he has been making joking comments that he is going to quit his job and go live under a bridge. He will say that he has picked out his spot, that he's found one that has a power outlet. I want to think that he is joking, so I simply tell him he can go whenever he wants, but don't think I'll be there with you! But I wonder what is going through his mind that he has started this line of joking. He is now morbidly obese, his kidneys are at 20%.....I just wonder how long he has left and if in his mind this is his way of coping.

Yep, denial. It really is a safe place to be when things get bad.

I also know that there are 5 stages of grief and we, as spouses, need to grieve the loss of our normal life, the normalness of our spouses, etc. And I also know that we can get to step 4, fall back to 1, progress to 3, fall back to 2.....that it can take years to process the grief of loss. And that's what we are doing, so denial is a natural part of that process. We just need to work to get ourselves out of denial and on to the next step.

DW

she wrote, "I can't go on like this".....

on a comment on my last post and I will write, "yes you can!" We all stay in a diabetic relationship for some reason or other. And as long as we continue to make the choice to stay....then we have to go on like this. There isn't another option because you can't change another person - you can't change him, you can't fix him, you can't make it right....you can only change yourself.

So I have learned that until I make the decision to walk away from this, I can go on....even when I think I can't. How? We do it by finding something to occupy our time - a job, a hobby, volunteer somewhere. We do it by surrounding ourselves with a family of friends and a support system. For some of us, we blog - we write down the things that upset us, we vent, we rant, we throw a temper tantrum via the keyboard. For each of us, we simply do it one step at a time.

But I would never ever think bad of anyone who made the choice to leave. Being with a non-compliant diabetic is just about the most difficult thing on the face of the earth. My hubby is still gone, so I am getting a reprieve and this is what we do - he goes to his family, I go teach art - we give each other a break from the every day life of diabetes.

It has been 12 days since his grandmother died and she is still in the morgue. No creamation or burial yet. I am just not sure what is going on but think that probably no one can make a decision. His mother was in a car wreck today. She is 76 and probably has no need to be behind the wheel of a car. His work is laying off more people. So I am sure the stress he is enduring at the moment is the "adrenaline" that is keeping him pumped up. Which means that if he is in a constant high the whole time he is gone, he will have major crashes when he gets back home.

I will be leaving in 3 weeks for a 3 week teaching trip - so I know I can survive whatever happens when he gets home - I have an "out"!

A few good things to report: I have purged this house of anything sweet, chips, crackers, etc. All the soda is gone. It's been a very good 2 weeks here!!!

DW

Surviving 101

Send the diabetic spouse to his parents. Have him take the pets. Listen to the silence. Start to remember what it is like to be able to spend a whole entire day without living in a world of diabetes. No blood stains from shots. No flopping in bed. No noise from a CPap machine. Listen again to the silence. Renew the spirit. Revive the soul.

I have decided that I could fall in love with silence.

I am healing. I am finding new strenght. Perhaps when he comes back, I just need to go away a little more often so I can remember who I am without being the wife of a diabetic.

So much for promises.

He STILL has NOT been to see his doctor about his heart. Sigh. I need to give up. He is not going to go. He even commented the other day that all it was was a burning sensation like heartburn!

How soon he has forgotten just how scared he was, that he could barely breathe, that he could not function, that the pain was seering in his chest......

And then his grandmother died this past weekend. He is leaving tomorrow to drive 1000 miles to be with his parents. I am not going because I have business commitments here that prevent me from going.

He has no business going. Especially since he has not been to see his doctor. Every single visit to his parents results in multiple layers of drama and he certainly does not need that right now.

Nothing I can do.

My sister was here this weekend. She commented that he looks horrible and has gained so much weight. I know. And it doesn't help to have what you already know confirmed by someone who hasn't seen him in months.

Good question a reader asked recently....do the good days still outweigh the bad? Should I stay or should I leave? I just don't know.

Same old game

We have been back a full week and he has not been to see the doctor regarding the Angina attack he had. Even thought he PROMISED me that he would go. Same old game.

He is feeling better, not in pain, so he's not going to go see the doctor.

So much for a promise!

DW

Catching up

Lots of notes to post.

5/25. We were on vacation in Mexico. He had a severe angina attack while walking (in heat) along a river bottom. He could not get any air in. The next 48 hours was severe vomiting and diarrhea attacks. He promised to contact his physician when we got home. Said he probably needed bypass or stints put in.

I honestly thought he was having a heart attack. Rather frightening.

Spent several days 100% isolated in our hotel room at the resort because he did not feel like getting out of bed, getting dressed to go to dinner, or walking to an on-site restaurant. Just glad it was an all inclusive resort that included room service.

5/29. During our flight home, had a stopover in Mexico City and he could not walk. Had to stop every few feet, get his breath. Sit down and rest. Horrible pain in his back, hip and knee. He said he is at his all time highest weight.

5/31. Late lunch with friends. He could not made it from the table, back to the car and said that he might actually have to start using a wheelchair.

6/1. He emailed his doctor. Did not call, just sent an email. No message back. He has pretty much just been sitting on the sofa or laying in bed since we got home. Hip, back and knee pain still intense. He has mentioned 3 times now that he thinks he will need a bypass, so that tells me he is worse off than he is letting on. He has never mentioned heart problems before.

I asked if his back/hip pain could be from his kidneys and he said no.

Even with all that, we did have a nice 2 week vacation.

Hand infection

I've been traveling and teaching art for the past couple of weeks. Flew home today and he has a horrible infection in his right hand. Just all swollen and tender. I feel so bad for him. His doctors have told him when this happens all he can do it start in on anti-inflammatories and he said he has done that.

Outside of that, all seems well and we are planning a vacation together soon....to a beach...where we can just rest and enjoy each other's company.

DW

Angry diabetics in denial

sending me nasty posts that I just continue to reject. Yet you continue to prove to me that diabetics are exactly that....angry and in denial. It just amazes me!!!

I have to wonder if you do not understand the cycle that we spouses so clearly see? You do not take care of yourself. OK, you think you do, but you don't. Your sugar drops, you hit a low, and look out - the venom just spews forth from your mouth. There are even times when it becomes physical.

And you think this is a "little" problem? Well of course you do because you don't remember anything you say or do when you are in a low!!!

Because I refuse to take care of you does not make me anything other than a totally smart person. Your disease. Not mine. In fact, when I married you (when most of us married you) you were not in the condition you are in today. If you were, why on earth would we have gone on another date once you hit that first low with us? Nope, back then, you were actually pretty healthy. Little did we know the progression of this disease or that you would do so little to take care of yourself!

Oh, and the other thing I'd like for you to learn to do is to READ! HE is going on the vacation with me! LMBO! I'm not taking a vacation alone....HE is going, too! So you must have really been in a low when you wrote to me because you obviously can't even read!

Yep, just keep sending me your nasty little notes. I will reject them and write my rebuttals here so everyone else can say yep, must have been a non-compliant diabetic who is in denial writing something like that. I have proof. Just read back through all the comments that other spouses have written. I know I'm not alone in any of this. It's not me. It's you!!! After all, you are the one who has this disease.

Now....do something to make yourself a little bit healthier rather than sending me your nasty little notes! :o)

DW

Facebook

Join me there by searching:

diabeteswife@yahoo.com

or

Dw Smith (Diabetes Wife Smith) - it wouldn't let me enter myself as just Diabetes Wife....so I'll be DW Smith over there. :o)

No idea how often I will log in over there...but I have set it up to have this blog feed there as well. We can have a more interactive chats and conversations over there. Hope it works!

DW

Dear wife of a diabetic....

In this post, I am writing as the wife of a diabetic to all of the other wives of diabetics.

Life is short. My mom had a stroke about 10 days ago. She is doing just fine....but it was a true wakeup call for me. I am spending a week with her, helping her with her therapy, making sure she can continue to live alone. And I wanted to share a few things with you.

1. She lives in a tiny apartment in a retirement center. She does not want to go live with any of her children. She wants to remain independent. She lost 100% of the use of her right hand with this stroke. She has PT & OT coming in twice a day. She sits in her chair and exercises her hand and arm almost non-stop. She repeats every exercise they give her. She does typing exercises on the computer. 10 days now and she has regained 99% of the use of her hand. She is determined to make herself healthier than she was before the stroke. Diabetics take note....you CAN repair what your body has lost! Wives take note....if the diabetic really wants to make a change, to get better, to get well, they will.

2. Mom is not doing this alone. PT & OT and her daughters, her neighbors, her friends. We are all doing everything we can to help her make changes in her eating, her diet, her exercise...in her daily life. We are here supporting her 100%. And she is allowing us to assist her.

3. Mom could have taken the route of self-pity, of depression, or sorrow. Nope, she is a true role model. And she is so patient with everyone. She listens carefully. She repeats her tasks. She doesn't hesitate to rest, but the moment she is rested, she is back at it again. She just doesn't stop.

I sit here and look at her and watch her example and am stunned that this woman who is almost 80 years old has more energy than my diabetic spouse. She is more willing to take on new exercises, new ways of eating, new ways of doing things than he will ever be. She has a will to live. Or perhaps I should say, she has a will to live the best life that she possibly can as long as she can.

The brain is an amazing thing. It can remap nerves. It can rewire internal systems. I have just witnessed it. From a right hand that would not move to a hand that is back to painting, typing, fixing meals and more. She has made an incredible recovery. Proof to me that if a diabetic wants to regain what they have lost...they can...if they are willing to make the necesssary changes!!!

FRAN!!! I am thrilled to have you back and so happy you posted a comment. I have been thinking about joining facebook and wondering if anyone would care to go there as we could all post with each other....not just me making comments on my blog. I will look into that next and post here if I can set something up.

Diabetes is so difficult for the spouse because it constantly pounds down our self-esteem. We get sucked into the negativeness of it all. Fran, I hope you will see that. You need to do what is best for you.

And to anonymous.....I have learned that we do what we can with what we have. So no regrets about staying with him. Don't do the "what-if's" about how you raised your kids. Yes, perhaps it would have been better had we left....but we absolutely can only do what we can with what we have at the moment.....and it is a true waste of our time, energy and strength to look back and wonder "what if". What we have to do is look at the present moment and determine if we are doing the best thing for us right now.

Is it best for me to stay with him? Is it best for me to leave him? This is not about him at all. It is about us. It is about me. Now, I don't advocate jumping ship right now. I firmly believe that any time you make a decision, you need to mull it over for a couple of weeks to make sure it's not a knee-jerk reaction to an event. But truly.....if I thought for a moment that I should leave him, I would. And I would not look back for a nano second!!!! I am worth that much to me. I deserve self-respect. I deserve to be treated like a woman. I deserve validity in my life.

If you have been with me during this journey, you will remember a few months back I was pondering whether I should leave my husband. But I am glad for now that I stayed. The doctor's have done amazing things with drugs and he is in a much better place. He has also come to realize that he cannot treat me like a rag, he cannot blame me for whatever, he cannot yell at me and while I still have to remind him of MY rules....he is doing ever so much better and we are in a better place in our relationship.

So, what are my rules?

These are the rules for the wife of a NONCOMPLIANT diabetic who has no desire to become complaint:

1. You cannot abuse me. Physical or verbal.

2. You cannot blame me for something I did not do. I will not listen to it. I will walk out of this house every time you start to blame me for something.

3. I will not allow you to try to convince me that I was wrong. If I was, you simply have to live with it. But you may not tell me that I was wrong....or that I am not right.

4. I have a right to my own opinons, my own beliefs, my own thoughts and you may not say anything negative about them. If you want to start that line of conversation, I will go shopping. I will be gone for a minimum of 2 hours. And when I come home, I expect that conversation to be over.

5. If I am going to share a bed with you, that bed will be quiet. There will be no snoring or bouncing, no restless leg syndrome. If you cannot work with our physicians to ensure me that I will have a solid nights sleep, then I will be in my own bed and you will not join me there.

6. I will not remind you when to take your meds. I will not assist you in taking your meds.

7. This is your disease. It is not mine.

8. If I tell you that you need to eat something, you will. If you refuse to eat, I will walk out for a couple of hours. I will only do this when I feel you are dropping into a low. If you go into a coma while I am gone (because you refused to eat) I will not be responsible for what happens after that.

9. You will not raise your voice in anger against me at any time. We can discuss anything you like in a rational, calm voice, but I will not listen to you get angry with me.

10. I am not your mother. She lives in another state. Do not expect to treat me or talk to me like you do your mother. I am your wife. If you want to stay married to me, these are my rules. I will be happy to call 911 whenever you pass out. I will not give you juice or put something under your tongue. This is your disease and you need to stay in close contact with your physicians. You need to tell them about the changes in your behavior, your eating patterns, your activity levels. You need to monitor your own blood sugar at least 8 times a day and chart what you eat. I will be here thru thick and thin....but this is not my disease and since you really don't seem to want to take care of yourself, I'm not going to do it either.

Feeding diabetes

someone commented:

I am a type 1 diabetic, and suffer from anger when my levels are low, although my anger isn't as bad as your husbands.

My diabetes is reasonably well controlled and it still happens to me a few times a year, and I'm rarely aware of it happening before its too late.

I am normally a very soft and gentle character but when my levels are low its like it just explodes from knowhere.
I hate myself after it happens and have even broken my hand punching the floor to vent it.
The best advise I can give is to make sure your husband always has breakfast asap, avoid confrontation and talk to him about his diabetes control in the evening and if he won't listen talk to his doctor/specialist.

and I want to thank you for the comments. But wow- hubby has never broken a bone in his anger - yet!

I do agree that eating seems to be the key to controlling the lows. He's been on a business trip and got up early today to fly home. Didn't eat. And his plane was delayed. So, of course, when he got here, he was cranky. I remained quiet til we got home and fed him immediately - and then he was fine.

Now - if I can figure that out, why can't he? LOL! You definitely have to "feed" the lows.

For the most part, things are moving along fairly calmly here. I believe that for right now, the docs have his meds sorted out and as long as he eats a little something several times a day, he seems to remain on a pretty even keel. And I'm quite happy with where we are - a far cry from a couple of years ago.

We have quite a bit of travel coming up, so we'll see how he does. His hip seems to have calmed down for right now. But then he was at sea level for the past week and I always think that helps him with his pain and comfort levels.

DW

Increase in pain

The pain in his hip is inceasing. He can barely walk. Today, he was sitting and said, "I have to work up the energy to face tha pain of standing up."

How sad is that. Still waiing for a return call from the doctor's office.

In the meantime, I'm sure the increased pain is having an impact on his sugar levels. He is sleeping tons. In bed almost all of the time. Fortunately, he can work from bed. :o)

DW

Hip replacement

For quite some time now, he's had severe hip pain. His doctors have told him he needs to have it replaced. He informed me today that he's calling them tomorrow to start talking about having it done.

I worry. They have said his kidney function is so low that he can't have anesthesia. Can they do a replacement with a spinal block? Will his kidneys handle that? It's just more drugs/meds that get into the system that have to be filtered somehow.

I realize the severe pain he is in. He's hobbling again. This time from the hip, not his feet.

Yet he still won't alter how he eats. Or test his sugar levels. Or do anything to help change the situation. He'd rather have a juicy fat steak (last night) and go through surgery than lose 100 pounds and relieve the pressure on his hips.

Sigh.

I asked him how long the recovery would be and he said 6 weeks. I asked if he planned to do it upstairs or downstairs and he said he would have to stay on the main level until he could do the stairs, but then he would be upstairs in the bedroom.

I assume there will be a lengthy pre-surgery process through the insurance company. So I don't think this will happen soon. I assume that I'll get my workout in going up and down the stairs 50 times a day like when he had his foot surgery.

I think I'm tired just thinking about it! LOL!!!

DW

6 am low

Just more notes about the "journey". He woke up at 6 am, got the peanut butter and crackers out of the closet and turned on the TV to Saturday morning cartoons! I sleepily asked him what he was doing and he said, "I'm having a low."

Well, I'm wondering where was the high he had to have had in order to balance the low so his A1c is normal? I have totally been missing his highs as he seems to be having more lows.

I've had a guest here for a week and he came out one day and it was about 10:30 am. He was in such a low and I knew it immediately. He was banging and slamming on the ice machine in the refrigerator. He yelled at me to see if I had called them to come fix it. I said, "you just need to replace the filter". He yells that the light is not on, it doesn't need to be replaced. Of course, my guest is here as well as another friend, so I very quietly said, "I think you've forgotten, the filter goes bad a few days before the light goes on". (We have a new refrig and you can't make ice if the filter isn't working.) So he wants to know where the filter is and I told him it was under the kitchen sink.

He proceeds to come into my studio where my friends and I are, brings the box over to me, sticks it like 3" under my nose and says, "Can't you read at all? It says you don't replace until the light comes on?" and in such a demeaning tone of voice.

So what do you do? Ignore him? That will just continue his litle tirade. I totally knew he was in a low as pissed off and irrational as he was acting. I also knew he would forget it completely when it was over. Yet I have 2 friends right there and I sensed how horribly uncomfortable they were. So I said in a very quiet voice, "well, why don't you try the filter anyway and if that doesn't work, I will call the repair guy?"

He stormed out of room and I looked at my friends and said ever so quietly, "now you know what a sugar low is like."

Of course, replacing the filter was all it took and the ice machine worked just fine. He got his ice, went upstairs, and my friends and I had a lengthly discussion about sugar highs and lows and the "real" nightmare of my life that I continue to cover up to the best of my ability.

If nothing else, I think my friends are better friends now as they know another aspect of my personal life. One I would have preferred to keep from them.

I just think it's so sad that he has chosen this route of non-compliance. These highs and lows cannot be good for him physically, yet he apparently doesn't get that. And I have to admit, for a man the age he is, he doesn't have very many close male friends and I imagine this is exactly why. No one else seems to really understand the emotional and social aspects of this disease. If he spoke to friends the way he did to me on that day, I doubt he would have them as friends. Women are a little different. My friends witnessed his verbal treatment of me, have sympathy for what I deal with, and are closer friends and will support me even more. Because I sat here and explained the situation to them and assured them that he most likely had no idea how he was treating me at that moment.

And most of my friends have witnessed how sweet and wonderful he can be when he is "normal". So they know that was not his usual behavior.

Back to today. It's now 7 am and I guess I'm awake for the rest of the day while I hear him upstairs snoring. And I wonder why I'm tired! LOL!!!

DW

Dear Deborah,

Deborah wrote:

I too am the wife of a diabetic. This morning he called me at work ranting about something that was out of my control. Thanks to your blog, I see that I am not alone. I have bookmarked you page and will visit it very often. What I wanted to tell you is I thought there was something wrong with me because I moved out of our bedroom too. I work and when we would go to bed, my husband would have to turn the radio on so loud I couldn't sleep. I hope you will keep your blog going as it has been good for me. We all need to know we are not alone. Thank you so much, Deborah

and I just want to reach out and give you a huge hug and assure you that you are not alone. There are so many of us. Most of us just suffer in silence. I know I did.

It took me 5 years to even start to figure out what the heck was going on. No one sat down and said to me, "he is acting like this because of his sugar levels." No one "educated" me. His doctors didn't bother to consult with me to see how I was doing - I had to figure this out all on my own.

So I started this blog to help others as well as a log, a journal, a story of the progress from now until the end.

Because I am ever so aware that there will be an "end" to this. Either because I leave him, he leaves me, or one of us dies.

We are having a pretty good run of things at the moment. The "new" bed has really helped. I am back sleeping in our bedroom and he seems to be happy about that. I'm happy because he's not flopping - well, he's still flopping, but it's not bouncing me off the bed. I put in ear plugs when I go to sleep and I don't hear a thing. I'm getting such good sleep at night and it really helps me deal with the stress during the day.

So my first piece of advice may well be to figure out how to get a good night's rest and if that means moving out of the bedroom - do it! Because with rest, you can build strength and energy to deal with the rest of this stuff.

Hubby's sugar levels have been pretty good. Even. Even is good for him. I can still tell he has a bit of a morning low....but it's not quite such a huge swing. While his kidney function is still at 22%, it's not moving....which is good.

In the meantime, I have an artist friend here visiting for a few days and am just having the best time of my life. Soooo theraupitic. So my second piece of advice would be to find something that you love, something that makes you happy, something that you can lose your heart and soul to....and find time for that every single day. It will help you deal with the stress of this as well. Even if it's just for 10 minutes! It really helps!

DW

"adjustable bed"

LOL! My how we have progressed as human beings. It's no longer a "hospital" bed - it's now an "adjustable" bed! A few months ago, I moved to the guest bedroom in order to sleep. The sofa just wasn't cutting it for me....and I couldn't sleep with him because of his restless leg syndrome and the fact he nearly bounced me out of bed at night.

But that didn't work as we have too much overnight company and he turned bedroom # 3 into a workout room (that never gets used) and everytime someone came to stay, I ended up in bed with him (no sleep) or on the sofa (back ache).

So I went looking for a single bed. Our bedroom is large enough that I could put a daybed in here. Browsing through craigslist, I saw an ad for an adjustable bed. Automatic. Serta mattress. Doesn't look like a hospital bed at all...but will raise and lower just like one. And only $200!!! So I bought it. Found bedding that makes it look like a daybed. It is perfect.

Problem resolved! He sleeps in the king bed and bounces all night long. I'm on the "daybed" in the corner of the room. Quiet, comfy, no bouncing! We are back in the same room and I think he is an ounce happier because of it.

When I first brought it home - he was a bit upset by it all. He said, "I hope you did not buy that for me - I am not going to sleep in it!" I said, "no, I have always thought I would like an adjustable bed for all the reading I do at night." He calmed down immediately and was content with it after that. And then I mentioned that mom might need it one of these days and I'd gladly give it to her when the time came. He was quite happy after that comment.

So, what is the stigma about a "hospital" bed that got his feathers in a ruffle? I mean, how fun to have a bed that you push a button and the head and feet will raise and lower for you? How cool to have a bed that you can adjust the positions to meet your needs? And when I told him that they retail for $1500.....well, then, and only then did he decide he was proud of my find!

Truth be told? You all KNOW I bought it with HIS future in mind!

Memory loss, sugar low, or both

An interesting problem has developed in the past few weeks. Well, it's not a "problem" - but it could be. This past weekend, hubby asked me to help him clean out his closet. Oh me....what a mess! But mission accomplished! He laid on the bed while I pulled things out and he had 3 choices: Goodwill, keep, or box. Simple process.

A few times there would be an empty box or package and he'd make a comment, "oh that goes to so and so that you borrowed." I just blew the comments off...not even paying attention. Until it came to an empty "compac" box (computer company). He said, "that is for the HP calculator of mine that you took." I simply stood there and said, "what HP calculator?" He said, "the one you use all the time." I pointed to the outside of the box and said, "this says COMPAC!!!" He said, "well, you took that one, too." To which I replied, "I have never used a compac calculator in my life. I bought the HP12C in graduate school.....FIFTEEN years before I met you!!" and he said, "No you didn't, I bought it - you took it from me!"

I was simply stunned into silence by my sheer utter disbelief in his statement. I mean, I just cannot comprehend what is happening to him. I understand memory loss. I understand sugar lows. But I don't understand how on earth he can possibly be to the point where he thinks that everything that is in this house is something that he purchased and I "took"!

And yes, a calculator is a very small item (even though when I purchased this one.....at that time....it cost $150 so it was a major purchase for someone in graduate school). But it's the concept behind the statements. First, that I would "take" something away from him that was "his". Second - that even though I have worked 33 years in my life....I never purchased anything - he bought it all.

Is delusion a part of memory loss? Is this what happens when nerve endings and brain cells start to die off? Just something else to keep my eye on as this disease continues to progress throughout his body.

Hip replacement

There are some days when you have to laugh in order to not cry. His doctors have hold him he needs to have his left hip replaced. Seriously, I feel that if he would just lose 80 pounds....his hip wouldn't hurt. And I have to wonder where this will lead - the other hip and both knees next? He doesn't move. He doesn't even try to move. He sits on the sofa and will move to the chair in his office. And that's about it.

So I am going to start blogging the progress of this part of his diabetes. But first, another question. I have noticed (and researched) that it takes 2 years for the nerve endings to die. During that time, the pain is almost unbearable. But once the nerve endings are all dead....the pain goes away. Could it be that the nerve endings in and around his hip are dying off and that is the major source of the pain? That if he can hold off a bit longer, perhaps he won't need the hip replaced?

Aside from that.....I was gone all of last week. Went to visit my mom and my sis. Actually my sis picked me up and then he was supposed to drive up to her house to pick me up. Come last Friday, his hip hurt too much for him to make the drive. So my prediction is that he will do less and less until he gets it replaced. Note - he was just fine until a doctor "told" him that he needed it replaced. Yes, he had hip pain off and on....but now it never ends. So I think much of it is subliminal - you tell him he needs surgery and he will just get worse until the surgery is performed.

And the there's the issue of anesthesia. His kidney doctor has told him that he cannot be put out because his kidney function is so low. How are they going to do hip replacement? With a local? A saddle block? OIY!!!

Then comes the other issues to consider. He will have to rent a hospital bed for the main floor as the bedrooms are all upstairs. That's not a problem. But there's no shower on the main floor. So bed baths? His comment - of course that's something "I" could do for him! I just had to laugh! Don't think so.....I didn't say that outloud...but I was sure thinking it! In fact, I was thinking hip surgery = another trip to mom's for me! LOL!

I honestly have no idea if/when he will have the surgery, but I do see his physical condition deterriorating as he now believes that he needs this surgery. I'll just post back as things develop. But for now, life is going pretty good in general.

DW

Changing my last post to say....

It's not so much that things are going too smooth - it's that I've become too complacent. It hit me yesterday that he is yelling at me about something every single day. I just ignore it. I don't let it get to me. I think I've become numb! Most days I can't even remember what it was because it's so stupid. I know one day he went ballistic because he couldn't find his laundry basket. Which was in the back of the closet loaded with snorkeling gear from our cruise last October. So he had not needed/wanted/used it in 3 months!

You sort of have to laugh. If you don't, you will cry.

There was the day he was screaming at me because I had ruined his wire clippers. I tried to tell him they were "my" wire clippers but to no avail and just walked away. Yesterday, I found his perfectly mint wire clippers in the upstairs closet in the exercise room where he had left them over a year ago when he was putting in the new wall-mount TV.

Sigh.

But I do know that these incidences still seem to be about 10:30 am - when he seems to go into a low - because he refuses to eat breakfast. So I just continue to ignore them. And totally forget them.

I also happen to realize that my headaches are returning with an increased frequency. Wonder if the 2 are related! LOL!!!

Positive Progress

Well, I have to confess that things have been going almost too smooth! It's been amazing. He went to the doctor's this week and no, he doesn't have the results of the lab work yet, but here is the progress thus far:

1. Feet have improved. No open sores. And he's wearing socks and shoes almost full time now.
2. They are increasing the meds that work to help control the shaking. OK, this is really not an improvement as his hands still tremble something terrible. But when we eat out, he simply orders finger food. Problem solved.
3. His bladder problem is coming under control and he is out of depends (really great news!)
4. They are going to prescribe something to help relieve his optical migrains.
5. Still having bursts of anger when he has a low....but I simply inform him that he does not have my permisson to yell at me...and that seems to calm him down for the moment.

The biggest difference that I see is his fear of being alone. So he is making changes in how he treats me. I used to promise that I would never leave him...but now when he asks I simply tell him that it all depends on how he treats me. It seems to be working for the moment.

I realize all this can change in a heartbeat...but I am really appreciating the reprieve in all of his diabetic related complications.

The other thing that has really helped is that his brother managed to get his parents to stop calling him with their every crisis....and he is not doing a panic reaction to their phone calls. I can't begin to explain how much that has helped.

DW

improvement

The gout in his knee is gone. He's back to moving around. We've had a very quiet holiday so far, and it has been so nice. I'm getting some much needed rest.

I overheard him tell his dad yesterday that he is probably going to have his hip replaced. News to me! No surprise - but it would be nice if he would talk to me about stuff like this. Now....it could just be a comment that he is making to his dad to get out of making the drive to see them - and that's fine with me. But if he does get it replaced....he is either going to set up a bed on the main floor or hire a nurse - I'm not going to run up and down stairs after him like I did when he had his foot surgery!

Overall, things are going extremely well. I'm letting him take a break from "healthy eating" for 2 weeks - then I'm going to make him do better. Well, he really hasn't done too bad - but I'm just not forcing it on him right now. I noticed immediately he's back to eating a whole bag of potato chips - but he's letting me buy "lite" and they are about 1/3 the size of a bag and 1/3 the calories and fat - so still a huge improvement over where we were a few weeks ago!

DW

Gout again

2 days ago his left knee became swollen. He's pretty sure it's gout. Says it feels like someone twisting a knife under his kneecap. Ouch! Can't walk. Has been in his chair - sitting. Grumpy as can be. Well, if I had that much pain I'd be grumpy, too! Pretty sure it came as a result of a chocolate binge. Well, can't blame him - it's the holidays. But I'm not sure eating chocolate is worth the pain he is in. Thought it might be gone by now, but no such luck.

DW

sick again

I sometimes think it's a change in weather. But then I think it's just ups and downs with sugar. There are times I just don' tknow what to think, but he is getting sick more and more, so I'm going to start making notes on that as well. He thinks today it's food poisoning.....but he did have cheese on his burger at lunch. Even though it was swiss....still cheese. So he's been sick to his stomach for the last 4 hours and now he has a head cold. Again.

I wonder how much his body can take getting sick like this all the time. It puts him flat in bed. The good thing is that we have arranged for a basically stress-free rest of the year. No tree here. No parties. A small family gatheringon Christmas Eve. Shopping is all done - nothing left to do and he is off from the 23rd to the end of the year. I hope he will spend some time working on one of his hobbies. I think that would be relaxing for him.

We are still doing Weight Watchers. He hasn't lost anything, but he hasn't gained, either. So he is still down 20 pounds. I just wish he could lose at least another 20. I think it would help him so much.

Hopefully he will be better in the morning.

DW

Dear Lori....about that book.....

I have often wondered why no other wife of a diabetic has written a book to this point?

Is it because we are so lost in the grief, depression, anger of this disease? Is it because we can barely cope with everyday life....let alone the stress of trying to write about it?

I don't post every day as it would just be way too upsetting. I try to make this a diary of the major events. But to write the minute details....the gross stuff...who would believe it? who would read it?

When I started this journey, if you had given me a book about my possible path...I would not have believed it. If someone, even a doctor, had told me what I would experience when he has a low, I would have said, "yeah, right!" with that "you are insane" tone in my voice!

And my other thought is...do I want to know? Do I really, truly, want to know what is going to happen next? Yes and no! It's sort of like....do I want someone to tell me the exact moment I'm going to die? Not really? I think there are just some things about the future that most of us want to remain in denial over! LOL!

So, update. We are having a generally good period right now. Continuing to lose a pound each every couple of weeks. Eating much less and more healthy food. It sure feels good. We have "fights" over meals about 3 times a week. He wants to eat a bag of potato chips and I just tell him that he can no longer have them. And yes, he still sneaks and cheats behind my back, but it's not nearly as bad or as often. His attitude is much improved. And we are entering the holiday season without chocolate. Yeah!!! He is still wearing shoes which is a miracle in my mind. And he is now wearing socks after years and years of refusing to consider socks.

I just continue to be thankful for the baby steps.

But I'm not opposed to wriring a book. Maybe my blog will be good reference for that one day down the line!

DW

another foot infection

Started Sunday. He can barely walk once again. Hobbling around. No real reason for this one as he has been sticking to Weight Watchers pretty good. Down 21 pounds. I wonder if it could be diet coke. It's the only thing non-nutritional he's doing at the moment. Well, that and he still eats a couple of Jolly Ranchers when he starts to go low. He is also testing his blood sugar once a day. I know he needs to check it a whole lot more, but this is more than he has done in years.

Baby steps. It's all good!

DW

Lactose intolerance

Well, he has definitely developed an intolerance to milk products. He had some cheese at dinner last night and was up all night long. Of course, that kept me up. I just can't seem to get in gear today and finally gave up.

And since he's not been able to keep food down, his sugar has been going low all day.

But I do think he's better tonight, thank goodness!

I love cheese, but I will change my way of cooking just so I can sleep nights!

We are still both dieting. It's still going well. Other than the cheese.

DW

Weight Loss

We are still doing Weight Watchers. He has lost 20 pounds and I'm down 12. It is not easy and we continue to take it one meal at a time.

The good things:

1. We are only eating out one meal a week
2. He has cut way back on the potato chips as he has to count them.
3. I can tell in his face that he is losing.
4. I think he's only had a couple of candy bars a week. At least it's not a bag a day. That I know of. :o)

I'm sure that this week it will just be a pound or so, but hopefully it will still be coming off.

He doesn't understand this is a change in lifestyle and still thinks it's just temporary. But the good thing is that he is a little more willing to try something new. We are trying 2 new recipes each week. Guarantees a bit of variety. He is not eating enough fresh fruit and veggies, but has started on celery and carrot trays this week. Still no exercise.

Yesterday, he missed a step coming down the stairs and landed on his arm. Has had it in a splint and has barely moved. But tonight the swelling has started to subside, so hopefully he can function a little more tomorrow.

He still needs to lose 30 pounds as a minimum. I need to lose another 20. So I'm sticking with this and my excuse is that he either has to eat what I fix, or fix something for himself. So that may just be a way of life from here on out! :o)

DW

To the spouses of those with diabetes.....(ATTENTION doctors & therapists)

It is time that we speak out! I receive so many comments and emails from spouses....so I wanted to start a thread where you can post. I plan to print this out and take it to the diabetic counselor. We need to get the word out to the professional field. So feel free to post your thoughts here!!!

1. It is NOT "his" disease. It has a direct impact on ME and the rest of his family. His parents, his siblings, his children. It has an impact on his co-workers. PLEASE stop ignoring what this disease and the drugs you give him do to the rest of us.
a. When he is low AND when he is high, he can get verbally abusive.
1) He will NOT remember this at all when he is back to normal.
b. When he is low, he simply cannot function. As this disease progresses, he becomes less aware of when he is in a low. He needs constant supervision. That is MY life.
c. When he is low or high, he is angry, irritated, agitated, can be physically abusive, but definitely verbally abusive.

2. I did not know this when I married him.
a. He hid it from me
b. He may not have known how bad it was.
c. He did not and does not take care of himself, although he probably tells you, the doctor, that he does.
d. He does not test his blood sugar levels
e. He does not take his insulin at the same time every day.
f. He does not follow your recommended diet/eating plan. He eats just about whatever he wants, whenever he wants.

3. I have learned that:
a. when he starts to go low....or to prevent a low, I need to create some kind of drama/crisis.
1) It needs to be critical enough to pump adreniline in him to release insulin to get him heading to normal again
2) It needs to be serious enough that the impact on him is immediate
3) I may not even know that I have developed a critical "condition" that can generate panic in him when I have an attack
b. a huge fight with him will snap him from a low to normal
c. a "crisis" in my life will level out his sugars
d. after time, this becomes subliminal behavior and I'm not even aware of the "dance" we do to get him normal

4. I know that his children
a. believe their father was an abusive man
b. do not understand that he has no memory of yelling at them when he was in a high/low
c. spent their entire childhood in an abusive home
d. will most likely pass that on to their children, not realizing it was health induced, not who their father is
3. are incapable of loving him because of this

5. I have figured out that
a. his father has diabetes and he was raised the same way
b. that when his father goes low, it causes him to panic which will bring him out of a low and back to normal
c. that when he goes into a low, his father will panic and that will bring his father out of a low
d. that his mother has developed a "chronic medical condition" that causes her severe pain at any moment
1) when she senses either of them might be going low, her condition kicks in, she starts to scream in pain, they both panic and their lows head back to normal
2) that she is completely unaware of the timing of her "attacks" - it truly has become subliminal
3) that this "dance" is amazing to watch now that I have figured it out
4) that I refuse to acquire any chronic medical problems as I refuse to do this dance

6. I have informed him that he does not have the right to yell at me or be mean to me even when he is in a low
a. The problem is that when he goes low, he can't even remember how to unzip a suitcase, let alone be nice to me.
b. I have moved to my own bedroom because the drugs make him restless at night
c. Even though I am retired, I still work so I can have reasons to leave the house when I need to "get away" from this.

7. I have considered leaving him, but I stay for the times when he is normal, when I get a glimpse of the man that I love.

8. Attention professionals:
a. Explain to this man exactly what is happening to his body.
b. Do not beat around the bush, sugarcoat, or try to be nice to him.
1). He eats 8 chocolate bars a day because you told him a carb is a carb.
2). He truly believes that he can do whatever he wants as long as he takes the pills you give him.
3). We understand HMOs tell you that you have to give a patient "hope". Stick to your hipocratic oath. Tell him the truth.
c. When he says he is eating healthy, do not believe him for one second.
d. When he says he is testing 4 times a day, ask to see the log.
1) why would you think the log is accurate? If he will lie to you, he will write down any number on the log
2) can't you see there are no pricks on his fingers/arms?
e. Why on earth do you assume that he is telling you the truth?
f. We understand patient confidentiality. But make an appointment to see his wife. SERIOUSLY. If you really want to know how your patient is doing, talk to the spouse, the children, someone who lives with him day in and day out.
g. STOP giving false hope. If this is a heriditary condition, then tell his children that they will most likely pass it on to their children. INFORM and EDUCATE - don't just medicate!!!
h. And about all those drugs - send him to an endocrinologist. Have one single SPECIALIST, not a FP, in charge of his overall care. Don't experiment on him. If you do, call the spouse first so she knows what to anticipate.
i. MOST IMPORTANT - and A1c is NOT a true indicator of overall blood sugar. If he is having lows at 10 am and highs at 8 pm, he can still have a normal A1c. You seriously need to be talking to someone who lives with him and ask the question, "do you tend to get into an argument the same time every day?"
j. NEVER EVER assume that a diabetic is being honest with you. Even when they tell you they are being compliant. Even when they show you logs and journals. A non-compliant diabetic is the best liar in the world.
k. STOP and THINK!!! You have a non-compliant diabetic sitting across from you who is now the world's best liar. His A1c is normal. He has given you false charts and logs showing he tests 4+ times a day and he eats healthy. LOOK at his medical record. LOOK at the number of times he has been to see you.....or how little he has been to see you. Get permission t speak to his spouse. If he will not grant that, KNOW there is a problem!!! (Can I say that any louder? Are you listening????)
1). My husband has probably said to you that he is single.
2). He probably removes his wedding ring before he comes into your office.
3). But I have spoken to the diabetic nurse, so ask her if his spouse has ever been in.
a) I have separate insurance thru the same HMO, so our records are separate.
4). Why would my husband want you to talk to me? He knows I will tell you the truth! Remember, he is a liar!!
l. He has neuropathy. He has had foot surgery. He will tell you he can no longer feel with his fingers. His feet are always ice cold. His nerve endings are dying off. YET....you refuse to tell him that all the other nerve endings in his body are dying off as well.
1). he has constant diarrhea, vomiting and I know it is the nerve endings in his stomach dying off. Why won't you tell him that? He won't believe me, but he might believe you!
2). he has constant backaches. Nerve ending damage?
3). His sciatic nerve was killing him last week. I looked it up, yep, nerves dying off. If he went to see you, would you tell him that? Do you KNOW that it is a common problem with diabetes? How could you - you think his diabetes is under control!
4). So his last doctor told him the lumps on his feet were his Scottish ancestry. You told him it was gout. But did you tell him gout is tied to diabetes? Did you ever explain to him that everything going on in his body could be a side effect of his diabetes? Do you tell him what to do for it or just give him another pill?
m. Have you ever spoken with me? NO!!! So, how do you presume to think you care for him? Yep, I got ya! Patient confidentiality. If you really care for this man, ask him to sign a release to speak to me. If I leave him, who will be here to call 911 the next time he slips into a coma? It is the WHOLE man you need to be treating and that WHOLE man includes his family.
n. And when you do talk to the spouse, or to him, and they are young, tell them to consider NOT having children. No one has the right to bring a child into an abusive home. And if he goes high/low - trust me, it IS an abusive home. And even if he doesn't go high/low, there is no guarantee that he won't at some future point and time.
1). But then here's the real quandry. If he doesn't remember what he says or does when he goes high/low, he will deny that he is abusive. If you don't talk to his spouse/children, how will you ever know?

OK, spouses, what have I left out?

Simply go to HIS health care provder's website, find the doctor's name, get and email address, copy and paste this into it and send it to his doctor. If enough doctor's and diabetes nurses read this, perhaps the lightbulb will go on somewhere out there and the world will start to see that his disease has a huge impact on everyone else. Diabetes abuse. I think it's way more widespread than anyone is willing to admit!

Inform & educate, don't just medicate......let's make that the slogan for spouses of diabetics everywhere!!!

DW

when he's down -

he's down. And when it's over, he doesn't remember a thing about it and is happy as can be, wondering why I'm exhausted! LOLOL! I HAVE to laugh or I'd just sit here and cry. Today was 180 from 2 days ago. He's well, happy, back working, joking. And asking me why I'm so tired. He doesn't even remember that I did 30 flights of stairs running up and down getting things for him Nor does he remember that I made him go downstairs when he got hungry.

Nice that things are back to "normal" and I think I'll be recovered by tomorrow.

DW

Why?

He is sick today. In bed all day long. No fever, but had cold chills and hot sweats. Couldn't move. When he tried to get up, his head was pounding. Didn't eat a thing.

but he had no problem calling me on my cell phone asking me to come upstairs. I think I did the stairs 30 times today. The last time, he wanted a muffin. I told him, no, sorry, you need to come downstairs to get it, I'm not doing stairs again today.

So he is downstairs, flat on the sofa, asking me to get him this and that.

I finally told him, no more. I need to sit on the heating pad as my back is killing me.

I have told him a thousand times we need to sell this place and move into a ranch. He just ignores me. So as of today, no more stairs, I don't care how sick he is. My back just trumped his diabetes! LOL!

Yet another day that nothing got done, nothing got fixed around here. And I know it's not going to get any better or any easier.

And I also know I'm tired and grumpy and crabby tonight!

Tomorrow will be better. I know it will!

Weight loss

Today is our "weigh in day". We are doing weight watchers online as our health insurance provider allows a substantial discount. I am so pleased! I lost 8 pounds and he lost 11. I know it is water weight and I understand that it will slow to 2 to 2.5 pounds per week if we add exercise and stick to the plan.

So, this morning, I have added 30 minutes of exercise and he has agreed to try this evening. Even if he just sits on the bowflex and stretches his upper body it will be more than he has done in 5 years.

Just pleased that he is giving this a solid try. No hope for anything more than just sticking to it today. That's my goal - one da at a time.

:o)

DW

Sciatic Nerve

His pain is so bad he called the doc to try and get in to see someone again today. Second visit in under a week. And he has an extremely high pain tolerance level.

Has been on the sofa or in bed. Can't walk hardly at all. Severe pain.

But he is still on the diet plan - doing fine with that.

DW

Dieting

Weight Watchers may not be the diet of choice for a diabetic, but it is the diet that hubby said he thought he could do. Only time will tell. This is the end of day 3 and he has stuck with it. He is starting to comprehend the concept of choices. He is asking me how many points items have. And I'm gently reminding him that he can eat anything he wants, but he has to count it.

So he has now been 3 whole days and has opted not to eat potato chips. That's a minor miracle!

I showed him that baked tortilla chips are less points than regular chips. He is catching on that whole wheat bread has less points than white bread and he is picking whole wheat tortillas over white bread.

He is still not checking his blood sugars. And he is sitting on a heating pad almost all day long because of his sciatic nerve.

He's gone 3 days with no soda. He's only had 1 chocolate bar that I know of and when I charged him 5 points for it and explained the glucose tablets would be 1 pt each - he totally got that!

He currently weighs 250 # and according to WW, he could lose up to 12 pounds the first week. I think that would motivate him completely. 4 more days and he can weigh himself. He just has to get the weight off. And so do I. He needs to lose 50# and I need to take off 30, so I estimate it will take us 6 months at a minimum. A full year at best.

Anyone else try WW as a diabetic? I'd be curious to know what the results are.

back pain and things to give up.

He went to the doc fo rhis back and was told that it is his sciatic nerve and he needs to stay off his feet until it heals.

So I decided to do some research. Sciatic NERVE = any nerve = nerve ending damage as in neuropathy?

Sure enough. I think this is going to be an ongoing problem with him. Neuropathy in his sciatic nerve. It even has a name: Sciatica. So from past research on nerve ending damage - he should have severe pain for the next 2 years and then the feelings will die and he won't have the pain. Wonder if it works the same with the sciatic nerve? Will he lose all sense of felling as in his feet?

Time to look into getting a wheelchair?

I do believe he is starting to see the end results of this disease. When we were on the cruise, he had his first ever pedicure and loved it. So I talked him into signing up for a seaweed wrap and flotation massage. It was highly recommended for people with arthritis and I just thought it might make him feel better.

When he got to the SPA and they did their questionnaire with him, they told him he could not get the treatment. There was a risk of the lotions they use getting into a needle injection spot and causing an infection. A few hours later, he actually admitted being very depressed over everything that he can't do because he has diabetes.

So we had a good talk at that point. I simply reminded him that he has 2 choices. He can continue to ignore his sugar levels and endure the progression of this disease and give up more and more.....or he can try to maintain his current status by watching his sugar levels, dieting, and exercising. That's when he agreed to diet and watch his sugar levels.

The sad thing is that was a week ago and although he has been on our diet for 2 days now, he is just not willing to test his sugar even once a day.

So, yesterday, while at the grocery store, he had a low. He grabbed a bottle of fruit juice and downed that, then a hershey's chocolate bar and I was starting to wonder if he was going to make it out the door or not. He had taken his morning insulin and had not had a single thing to eat. So I asked him about that. Why would he not eat? And he said he just didn't feel like it. Once again I simply reminded him that if he doesn't take care of himself, all I can do is call 911 when he passes out.

Why doesn't he carry glucose tabs with him? And don't tell me to carry them for him - it's not my disease!!!!!

He said to me last night, "You should just leave me" and for the first time ever, I replied, "Well, I know it's an option that I have, but I'm not leaving yet."

He did not reply. I think I shocked him! I'm hoping he will think about what I said. I truly am not even considering leaving him, but knowing that it is an option is good mental health insurance for me.

DW

Doing well

Just keeping my blog up to date here. We just got home from a 10 day vacation and it was nearly perfect. About 3 days ago, his back started hurting him extremely bad and he has a call in to the doctor today. And on the first day of our trip, I messed up. I totally missed a sugar low. He was trying to put a luggage strap on his suitcase and could not get it to fasten. I was so upset with him and couldn't understand why on earth he couldn't do such a simple task. And then it hit me he was having a low. Got him breakfast and he was fine.

Amazing to me when things are going smooth and I don't think about diabetes every second of my life, then when he does have a low, I don't recognize it. And I know he didn't even know it was happening.

He has agreed to diet. Starts tomorrow. I just pray he can stick to it. He's gained 30 pounds this past year. He can't really walk, but he can do the stationary bike and that's a place to start.

DW

No news is good news?

I think his meds are regulated finally. His feet are better than they have been in quite some time. We are going on a cruise in a couple of weeks. I'm hopeful it will be fun! Life is good for the moment! Just posting an update!

DW

Things are going well.

So there's not much for me to write about. Life is in a holding pattern. His feet are still horrible with new open sores all the time. But they do heal, just new ones form. He still has bouts with sulpher burps followed by vomiting and diarrhea, but swears it's an intolerance to milk, so he's started drinking soy milk. And given up cheese.

His attitude seems to be a whole lot better. And for that, I'm ever so grateful. Hopefully the change in meds is all good for the present and we can enjoy life together.

DW - smiling again

Plumber's wife wrote:

I am a wife of a diabetic, we have been married for two years. He's a plumber and allows himself to get too busy to check as often as he should.

I really need help. He's on various meds besides the diabetic side effects that are beginning to make me feel that I am just a roommate, housekeeper, nursemaid. I have been giving 100% in the relationship but due to his fatigue, I grow more and more empty.

Last night for instance, my son had a football practice, DH had a side plumbing job and if I hadn't called at 7pm, he wouldn't have made it home due to a diabetic low - he was at 43. He doesn't know anymore that it is going low. He has reached the thresh-hold.

I am at wits end. I want to love him "wide open" but the feeling of insecurity lately has been overwhelming. I don't know from one day to another if God will bring him home.

And I do feel so bad for you. I'm obviously not a therapist and can't really give advice....I just share my life experiences here for other's to read.....and to help me keep my sanity! So I'll say it again.....writing has been very good therapy for me. But I have also sought out professional advice on many of the issues I'm dealing with....and I'm getting ready to do it again.

I've been gone for 3 weeks. I'll be home tomorrow. Hubby had another episode of sulpher burps, vomiting and diarrhea last week. He still thinks it's lactose intolerance yet the labs show it's kidney failure. And I need help dealing with this. I need a professional opinion on what to say to him....how to help him comprehend that yes, his labs can be good on Thursday and bad on Friday. He seems to "get it" that his labs can be horrible on Friday (15% kidney function) and good again on Monday (26%), but he just can't seem to comprehend that they could possibly be good on Thursday and bad by Friday. And I just want to scream and pull my hair out!

So I'm going to call the counseling department this week and schedule an appointment.

Which will most likely end up making me want to pull my hair out even more.

But when I get to my wit's end....I seek help. I, too, went through the phase of feeling like a roommate, house keeper, maid, chauffer.....and I still bounce back once in awhile to those thoughts. In fact, I do think it's something I work on constantly....trying not to allow him to make me have those feelings. If he won't take care of himself....then you can't take care of him either. We just can't change these grown adult men. We can't turn them into someone that they are not.

But we can seek advice and help for how to live with them, how to cope with their inability or unwillingness to change, how to make healthy decisions for us. And then we constantly make the choice...do we stay...do we leave?

Or just take long vacation breaks! I've been gone 3 weeks, teaching art classes, 1000 miles away. My sister went with me. We drove. And it has just been a wonderful time away. She and I talked forever while in the car, in the mornings, late at night. It has been so thearupitic. And guess what? He has survived my absence. And if he can take care of everything while I'm gone....then he can continue to handle it when I come home. I think I'm learning little by little that I don't have to step into the role of nurse, maid, chauffer.....that I can just be the woman I am meant to be....and let him take care of himself.

We'll just have to see how it all works out when I get home tomorrow!

DW

a good week!

I've been gone 2 days and no crisis! He said he is feeling well. He had labs done on Wed, so I asked if he had the results and he said no. I'm sure he just doesn't want me to know what they are. But that's fine. I'm leaving tomorrow and will be gone til the middle of September, traveling, teaching art classes, visiting friends. My sis is going with me. Will be a great road trip!

DW

Sulpher burps

So, he has decided that it's because he has suddenly become lactose intolerante. I'm pretty sure it's all tied to kidney failure. He had another episode of them yesterday, but no vomiting, and he seems to be past them for now.

However, his headaches seem to be almost every day. And severe enough to put him in bed. But will he call his doctor? No!

I'm off to visit mom this weekend. I've already informed my neighbor that I'll be gone for 4 weeks starting next Tuesday. She said that she can come check on him any time I need. So all is well and I'm getting a wonderful month off with my sister! Can hardly wait!

DW

Weekend update

It's almost a pattern now. Every time I plan to leave, something happens to him. I went to visit my sis yesterday. 2 1/2 hours away and decided to spend the night. He woke up with a severe backache, so bad, he called his doctor and they had him in for blood tests.

Rather than spending 2 nights, I only spent 1 night and am back home.....and he is back to being just fine.

Logging all of this really helps me see the pattern.

I'm off next weekend, Sat & Sun, to demo art products at a show a couple of hours away, so I'll spend the night there. Shall we bet that something happens to him again next Friday? Almost certain.

The doc did not call back with labs today, so I'm sure they are fine and they will call him on Monday. The area of his pain was right at his kidneys.

But I'm feeling rested. Even a 24 hour break is great!

DW

Back to normal, so to speak

The acute renal failure episode is behind us. Kidneys are back functioning at 26%. His swelling has gone down. But he is having lots of migraine headaches and severe backaches. Tonight he was limping while he was walking. But all-in-all, things are as normal as they can be.

I've been busy with my art. Preparing to teach 44 classes back at the store that is about 1000 miles from here. This time I'm driving and my sis is traveling with me. A girl's road trip! Should be fun! We will be gone 4 weeks. I'm sure something major will happen to hubby, but I'm planning on having a fun trip!

DW

Does he or doesn't he....

want me to know the truth? I am in a rather jovial mood tonight and it's a darn good thing! We had this big blow up last night and I told him I don't want to hear another word about his diabetes.

So he left the doctor's papers on the kitchen counter. Nothing else. Just that one piece of paper. Out in the open. Of course I read it! LOLOL!

Diagnosis "ACUTE RENAL FAILURE" - primary

Are we surprised? Not really!

BP was 90/60
Pulse 90
and the orders for all the labs they were doing that day.

And of course, it's reversable at this point, so for some reason, it's just another day in the life of us at the moment.

They want him back in for more labs tomorrow.

DW

Feeling so alone

Do you ever have that feeling? I'm there tonight. And even though I know in my head that I'm not alone, I'm having that feeling tonight. Hubby went back to the doctor's yesterday and they ran a whole battery of tests. I went to spend the night at my mom's. Came home and we went out to dinner. While at dinner, he started to talk about yesterday's office visit. I asked him when he has to go back and he said he was to call his doctor tomorrow to see if he should restart his meds.

So naturally, I asked him which meds he stopped and he didn't know their names. So I asked him what the meds were for and he said they were both diuretics. I asked him why he was taking 2 diuretics, did they have another purpose and he just blew up at me. Right there in the restaurant. And I am so tired of this type of behavior that I looked at him and I said, "Fine. I will NEVER ask you anything about your medical condition again. But do not EVER ask me to drive you to he doctor's office or to go with you." And he said, "Well you asked me 3 times what the meds were, once is enough." And I said, "No, once is not enough when you cannot tell me what the med is for., If you asked me you know good and well that I would tell you the exact name of the drug and exactly what it is for and exactly why I am taking it." He looked at me and he said, "you are so right." And we have not said a word to each other since.

I know that he treats me like an employee. He only tells me what he wants me to know. But I have also witnessed that is exactly how he treats his doctors. And he does not hesitate to lie point blank to them, so of course, that's why he doesn't want me in the doctor's office with him.

Yet, when he is scared like he was on Friday, he wants me right there taking him, waiting with him, bringing him home, comforting with hin and listening to what he wants to tell me about the office visit.

Something snapped in me tonight. I am no longer willing to be a partial participant in this journey. Either I am not going to have anything to do with his disease at all - or he is going to turn a corner and involve me 100%. So for now, I will continue to write what I see in him, the changes that I observe and what his behavior is like, but I am not going to discuss it with him, ask him a question, anything. I am tired of how he treats me so I'm stepping out of this part of his life.

Which makes me feel alone.

We'll see how long he wants to travel this road all by himself. It will be interesting for sure.

DW

more problems

Well, he has been vomiting and having diarrhea and sulfur burps since Sunday. Took him to the doctor today. No, he did not want me to go in with him (soooo frustrating). His Creatinine is at 3.3, Potassium up to 4. His sugar was at 65 when he got there. The doc told him to go eat something while the labs were being processed, when we got back, sugar was at 126. And there are white blood cells in his urine. So an infection somewhere?

His GFR is at 21 today, Stage 4.

and he is still in DENIAL!!!

Telling me this is a virus.

Sigh.

They started him on even more meds and an antibiotic. If he vomits again, he is supposed to go to ER.

I think I need to throw up just thinking about all this.

DW

Pam said......

Thank you so much for what you do and write. My dad did nothing for his diabetes until it was too late. I had to deal with him as a child/adult and now I deal with my husband who has had type 2 for 4 years. My Dad recently past away, and now I face what you do in my own husband even more. Reading your blog has helped me to see that I am not the only one who had trouble dealing/ being a caregiver. It has even made me smile! Keep it up!

Well Pam, I write for my sanity. It is my release. My escape. My journal of this journey. My report to his kids when he is dead and they want to know why I didn't do more to help him live. It's a record of our lives from the perspective of living with this disease.

You are not alone. Oh me, I used to feel so completely alone until I started this blog. About 3 years ago, I truly thought it was all me. Now I know it's not. And I know there are many other spouses of non-compliant diabetics out there. There is strength in numbers. That's for sure.

Today was a fairly good day. I think he is done with this latest bout of diahrrea, but I swear, his poor feet look worse than ever. I don't know how he can stand on them. But he manages. He devoured another whole bag of tootsie rolls yesterday and today I saw him with a bag of potato chips. I really wonder how long he can continue this eating pattern. He definitely put on more weight while I was gone. Once again, it's his life and I know I can't change him. But watching him do this to himself is so hard.

DW

Nothing to do with diabetes (I think) but GRRRrrrrr......

I've been gone for 10 days and you'd think I'd left a 10 year old home alone! EVERYTHING is a mess! And he didn't do any of the things he said he would do. ATV is still sitting on the trailer in the drive and our HOA has a 3 day limit. Well, so much for that rule! LOL! Kitchen counters are a complete filthy mess. I smell dog pee in his room. Thank goodness that's the only place I smell it and I just closed the door today. I need to finish moving the rest of my stuff to the other bedroom so there's no reason for me to enter his stinky domain!

It's so sad that all I can do is laugh. I've been up for 3 hours cleaning the main level, laundry is going, trash is out. He said that 2 days ago he was sick with vomiting and diahrrea. So I asked him what he ate. He said he scrambled some eggs. I looked at the expiration date on them - July 18. I can't believe that he can't even read the date and then it hit me - I wonder if he can SEE the date to read it???? I guess next time I leave I will toss out anything that will expire while I am gone. How sad is that?

And of course, he dumped a soda (not empty) into the trash in the office and when I dumped that into the big bag to go out, the soda went all over the floor and I had to mop it up. I swear, I spin my wheels just cleaning up after the man.

No wonder I enjoy my travels so much. I'm a guest instructor and get treated like a "queen" - I don't have to even think about him, no one to run errands for or clean up after - it's actually pretty nice. But then again, that's what caregiver respite is all about. Getting away, getting a break, resting, enjoying a moment of life.

I've agreed to do this all again, for 2 weeks, so it won't be long and I'll be on the road again. In the meantime, I don't have the time to worry about him or deal with him as I have to be making up class samples and then making class kits for the next round of classes.

And I even came home with surplus spending money (I made more than I spent!) So it was a good break and I suppose I will just put a smile on my face and continue on with life.

But no wonder so many spouses and partners of diabetics just walk out on them. No wonder his first wife left while he was gone. I truly do understand and would never fault anyone for leaving. For now, I will continue to stay, just increase the frequency of my trips away. I think it will work. I just need to get past the frustration of the mess I face when I come home.

And then I have to ask myself - can he even see the mess? Does he know what a trail he leaves behind? Can he smell the puppy pee? I don't really want to know the answer, for now, I'll just ponder the quesiton. But if diabetes kills the nerve endings in the fingers and toes, I'll bet money it kills the nerve endings in the nose just as much.

Well no wonder he can't hear me half the time - the nerve endings in his ears are gone!!! LOLOL!

OK, ya gotta laugh - else you will cry.

DW

My R&R

Well, just one more day and then I head back home. This trip has been just exceptionally wonderful. I've taught 150 students in 23 classes in the past 8 days. I've made wonderful new lifetime friends, stayed with new art pals, and just been over in the left side of my brain for the last 8 days. Tomorrow = lunch with musical pals. What fun!!!

Hubby has called 2-3 times every day and I know he knows I'm having just a little too much fun! LOL!

Last night was strange and I wanted to write about it. I didn't have a late night class and my friend I'm staying with offered to cook dinner. I think I got back to the house around 8 pm and her husband was already 2 sheets to the wind from drinking beer, so we decided to join in and poured some red wine. I had 2 glasses - which happens to be 1 glass over my limit! The 3 of us were sitting at the dining table, eating and laughing and her husband was just so much fun. He was trying to convince me that I should move here and just drink and party all the time. Now, I know that's not a possible lifestyle, but for the first time in a very long time, I wanted to party. I wanted to go dancing, to sing, to laugh and giggle, to tell wild stories, to flirt.....

whoa! Back up! I wanted to "flirt"???? What a long lost feeling! And it hit me - I have been so busy worrying about my husband's diabetes, what is happening to him, what might happen next - that I have completely let go of that fun girl I used to be. But the question is - how do you find her again? How do you get her back? How do I laugh more and smile more when I get back home and get back into my daily routine of caring for him?

Well, the store has invited me to come back out in just another 4 weeks and I said YES!!! So I have just a few days to create new class samples and get my act together. I don't think there's going to be a moment to worry about him when I get home. Maybe this is a good thing!

Another break from "real" life!

Just wanted to post that I'm back visiting my girlfriends and having a 10 day break, teaching creative classes, and having a blast. This trip, the place I teach at paid my airfare, are putting me up and providing me a car to drive, so absolutely no expense on my part - but I'm teaching 23 classes in 8 days, so it's "work"! LOL! (Well, if you can call this work!)

At least I'm getting a break, jumping over in the the left side of my brain, and for the most part, completely and totally escaping from real life.

Went to the opening of Mamma Mia with 14 women - now that was a hoot! And went to a musical that another friend is producing. So it's been a fun trip so far!

Hubby keeps trying to call me, but can't get me when he "needs" me as I'm just not answering the phone in the middle of a class, so I think this is really good for him! I've chatted with him about once a day and he seems to be doing just fine. The store where I'm doing classes is already planning to host me again in 6 weeks, so I'm thinking this could be my caregiver respite on an ongoing basis. I'll just have to work hard at making that work for me!

DW

New foot problems

I continue to be amazed at some aspects of this "journey". This week, his right foot has swollen up something terrible. In the area just above the toes. And the top of the skin looks like it would if you got a floor burn. You can almost see red blood through the skin, an area about 2" in diameter. I asked him what happened and he said, nothing, it just showed up.

So, of course, he can't wear shoes and his sandals hurt his feet and I know it's really hard for him to walk on the bottoms of his feet barefoot. Sigh.

He also had a migraine headache that lasted about 5 days. It's gone now, but he was pretty much flat on the sofa the entire time.

7:15 on Friday night and he's gone off to bed. Pretty sad.

DW

The amazing body

He is sleeping on the sofa right now. Snoring like all get out. The interesting thing is that his feet will go through spasms of severe shaking when he stops breathing due to his sleep apnea. It's like his feet shake to alert him that he needs to breathe. I think this is just an amazing pattern and think the bod is incredible.

Looking at his feet, the carcot and gout are just as bad as ever, but no open sores, so much to be thankful for.

He was awake most of last night with a severe migraine headache which has stayed with him almost all day. He didn't eat anything til 3:00 pm. And he's been sleeping since 4 pm. (It's 6:30 now). I'm oping when he wakes up the headache will be gone.

I really should get the video camera out and shoot his shaking foot, his snoring, his sleep apnea. Problem is by the time I found the camera, he'll be awake.

DW

A new day -

I have no idea what that was, but I woke up this morning and I'm perfectly OK. Wonder if it was an allergic reaction of some kind. I seriously thought I was going to have to go to ER yesterday morning because I just could not breathe. Last night I just hurt so bad in my chest, just like pneumonia. But today - I'd swear I never had anything wrong. Just amazing.

So, can you have an allergic reaction to a non-compliant spouse? LOLOLOL!!!!

OK - you gotta have some humor in this! :O)

And he is so much better today. Like last night never happened. We're back working on re-doing his office. More cables. I swear, can a computer geek have too many cables? NOT!!! But it is all starting to come together and it will be very nice. He finally has all his computer books and software in one place, the printers are all working finally (we had a problem with the network and 2 printers had been non-functioning for months. So progress! Yeah!

It's been a good day! Vacation is almost over, tomorrow he goes back to work.

DW

I'm so sick....

Not sure, but it feels like the pneumonia is back. Sigh. So we came home early and I was just sitting on the sofa, resting, had the heating pad on. Had been resting for a couple of hours and picked up my laptop, and started answering emails. He came downstairs and wanted to know if I wanted to go to Burger King or McDonald's with him to get something. I said, "let me finish this email first" and kept typing. He paces the kitchen and says again, "are you ready"? I said, "no, just let me finish". He got mad and walked out the door. Got himself dinner. Nothing for me.

I find it so amazing - I'm sick and he can't wait 2 minutes (ok, it had probably been less than that) for me to finish and email, close the top of my laptop and get untangled from my cords. And in all seriousness, I had finished the email, put my hand up to close the laptop when he walked out the door. I just sat there in shock. That was 4 hours ago. He hasn't said a word to me since. He came home and went upstairs to the bedroom. And I don't even feel well enough to care. I fixed a cheese sandwich half an hour ago.

He's off again tomorrow. I may have to go shopping all day long. I keep saying that I love him and I'm going to stay. Tonight I wonder why? What on earth is wrong with me that I put up with this? I'm the one who is sick, trying to divert pneumonia again. Problem is, I'm too sick to care, just wanted to write this note to myself.