Surgery - I like a good blunt surgeon.

I thought I would post the rather graphic description that the surgeon gave us this morning. I understand that they have to prepare us for the worst, and I am truly grateful for that. But I wonder if my husband ever gave thought to any of this 30 years ago when he first got diabetes. Ok, I know he didn't, nor has he given thought to it at all in the last 30 years.

Uncontrolled sugar is what got him here. Remember, this is a guy who last renewed his test strip Rx in 2001. He has not tested since I met him in 1998. He takes all the meds they give him. He eats anything he wants. Whenever he wants. Until a month ago.

So, first, we saw photos from the angiogram and echocardiogram. The surgeon says, "there just are not many spots that are healthy enough for us to go in and graft a good vein to."

Whoa! Hold the fort! I was thinking "multiple blockage in each artery". I was not thinking "we can't find a spot to do a graft - it's that bad in there!!!" I think my own heart missed a beat right there. But as we looked at the photos of where the dye had gone in, you could clearly see blockage.....everywhere. Some more than other places. But a good healty vein? A good solid opening? I saw one spot! The doctor had circled 5 possiblities and said that he honestly couldn't say for sure until he gets inside.

This did NOT happen overnight! This did not happen in the last year. This has been happening over the last several years. And my husband just helped it along. All from high sugar? The surgeon thinks so.

Once we looked at all the photos, he started to explain the process. They will prep him for surgery. Once in the OR, they will of course, put him to sleep. They will cut through his chest bone. I'm thinking power saw? skillsaw? dremel tool? He didn't say and I didn't want to ask. The body gets hooked up to a heart machine during the surgery. The blood will pool in the sac under the heart, get syphoned into another machine, washed, then put back into his body via and IV. When the bypasses are all done, they will shock the heart to restart it. He has a DNR in place, but he has to revoke it or they can't do the surgery. Makes sense. So they then explained the process of what happens if something goes wrong.

Basically, they will keep him alive on life support, make a decision to invoke my medical power of attorney, and I have to reinstate the DNR.

Did I ever think this would be my "job" when I married him? Of course not! Do I want this "job"? I do know what his wishes are, but I wonder if I got to that point, would I be able to do it? I just don't know.

The veins will be taken out of his left leg. I worry that this might have a future impact on his legs? Always a concern for a diabetic, but I guess when you weigh the pros and cons, it'sa risk he has to take.

And then the seemingly endless list of what can go wrong. Stroke. Heart attack. arrythmia. Infection. Problems with blood transfusions. Pneumonia. Fluid in the lungs. Each with an increased risk.

All that was standard. Then the surgeon started looking at the endless list of medications that hubby is on and that brought on a brand new list of risks. And more labs and tests that have to be done before surgery.

And then he brought in the additional problem of his stenosis of the spinal column, inability to participate in cardio physical therapy after surgery and what that might lead to. None of it good. I know by then I was blocking things out - I just didn't want to hear any more. We had been in his office nearly 2 hours at this point. Hubby was blocking it out long before I was.

I think by then my head was throbbing. I wonder if the benefits outweigh the risks. But I just don't think there are any options and the surgeon didn't offer any either.

We are both happy that we felt comfortable with the surgeon and his team. We are grateful that a date has been set and we won't have to wait long. Hubby is making plans for coverage at work. Between labs, tests, and getting ready, we will both keep busy.

Isn't it sad that we had to get to this point before hubby let me participate in his medical program? But I don't think he has an option either. He's not supposed to drive until after the surgery. He's not supposed to lift anything over 5 pounds between now and 3 months after surgery. He's not supposed to do stairs more than once a day until after surgery.

I have my moments when I really want to look at him at tell him what an idiot he has been for the last 30 years. But I won't. I'll just say it here. It wouldn't do a bit of good to say it to him now.

I am pretty grateful that I don't have to get up and go to a job every day. I don't know how I could do anything other than this right now. We have an excellent support network of family and friends here and I am doing plenty to take care of myself - so I can take care of him. For fun, we're going to get mani/pedis tomorrow. He simply can't go to surgery with his feet the way they are. LOL!

Keeping his spirits up will be my full time job the next few day. Keeping him from getting depressed. Cooking healthy meals for him. Yep - a full time job. So, to the diabetics who read my blog - test, test, test. Don't trust a good A1c. Remember - his has always been good until last December.

And if you are married to someone who doesn't test, print out my entire blog and make them read it! This is simply not a journey I would wish on anyone. But we are here and we will journey forward one way or another.

DW

to Carol

thank you.

DW

Time

Would I make it stand still if I could? Would I turn back the clock if I could? Would it do any good if I could? All questions I've been thinking about. The cardiologist said that he would be where he is, but not this soon, had he chosen a healthier path of living at a much earlier age. But then, he would have given up the one thing he loves the most - eating. Eating what he wants, when he wants. So I don't know. Do you give up something you enjoy to have a longer healthier life, or do you just charge through what you have of life knowing that you are loving every moment of every day?

I don't think my husband would have been a very happy man living his life with restrictions and I understand that now. I understand the choice he made to not be compliant. But how sad. That at such a relatively young age, he is facing death.

OK, how pessimistic was that? Of course we both hope and pray that the outcome of the bypasses will be only positive. But this has made us stop and look at what will happen should he have a stroke, become paralyzed, become incompacitated, or die. Something the every diabetic family probably needs to think about - ahead of the event.

Yesterday, he got a handicap parking sticker. Something he has needed for over a year. We laughed and joked that this made it official. But I think laughter is a way to avoid the fear. Or perhaps it allows us to remain in our "fog". We know we are still in shock. We figure the stages of grief can wait for now. Yet I see both of us floating in and out of them. We have our moments of denial, anger, reconciliation and progress. We have moments where we sit and talk about what to do, what we can do. We focus on healthy foods (he has already dropped 10 pounds). We talk about what types of exercise he can do as soon as surgery is over. We talk about pain management.

Then we have our moments of sheer denial. This isn't happening. Let's plan a cruise for June. Until reality slaps us both back to the present. We both agree that we are living in the unknown. It's like wandering around in a tunnel and there's no light at either end. Until we meet with the surgeon and they actually schedule a date for surgery, everything is just in limbo.

Until reality slaps us back to the present and we realize the dogs are out of food, the refrigerator repair guy will be here in a couple of hours, we need to work on next weeks menu and grocery list......

I think today I want time to stand still. I don't want him to have to have this surgery. I want there to be an alternative. I want to turn the clock back 30 years and make him eat right and exercise. I don't want to go forward down this particular path. We sit and talk and he doesn't want to go down this path either. He is anxious about the pain. I try to reassure him that they will manage his pain, all he has to do is tell them what the level is. He is anxious about having to get up and walk immediately after surgery. He can't walk now because of his back. I remind him that the back surgeon's team is already coordinating with the cardiac team to insure that he doesn't experience pain.

So I find myself now in the role of comfortor, cheerleader, motivator, encourager. And this blog has become a place for me to grieve, to share my own fears, because I can't let him know any of it. I have to remain strong for him. I have to keep his spirits up. I have to find humor every day in something so he can see the humor in something.

I couldn't share with him my anger. I can't share with him my fear. Thank goodness for blogs!

We have researched his surgeon and the facility and are extremely pleased - they are in the top 15% of the nation for this type of surgery. It has helped his confidence to know this. We have made a list of quesitons to ask and have been modifying it daily. We are just waiting. Waiting til Tuesdays consultation. Waiting to have the surgery scheduled. Trying to stay "normal" - yet all the time a sense of wandering around, no direction, worried that he could have a heart attack at any moment, gently reminding him that he can only do stairs one time a day.

I am working to keep my own physical strength up. I'm obviously running up and down stairs for him multiple times a day. Alone in carrying in all the groceries now. Having to carry the carpet shampoo machine upstairs by myself (you know, puppies do make messes). So I have started a strengh building program working with repetitions and weights on a bowflex machine. Hoping I can keep up with the demands of what I need to do to keep him from lifting anything over 3 pounds or exerting himself in any way until we get past this.

In limbo. That's where we are today. I'm off to find something fun to share with him. I think it's time for a smile today. :o)

DW

survival mode

I woke up this morning thinking that both of us have gone into "survival" mode. It doesn't matter what he did or did not do that got him to this point. He is here. We need to do whatever it takes to prevent a heart attack between now and surgery. That includes cancelling all non-essential appointments, cutting back on work so stress is reduced, limiting stairs to once down and once back up a day for him. Doing whatever it takes to survive.

We are starting to talk about the "what-ifs", trying to prepare for the future. If one can do that. We talked about his return home, getting a hospital bed on the main floor since our bedroom is upstairs.....long term care arrangements if those are needed. Rearranging furniture, who can come help moving furniture, etc. Today I hope we work on the financial aspect of this. They are all good conversations. Trying to think logically, yet long term. I think that while we are both still in a bit of shock and trying to absorb the information as it comes in.....and perhpas in a bit of denial on some level, we are making a bit of progress in preparing ourselves for this. We have requested support from the chronic care counseling unit and hopefully we can schedule that in the near future.

While I truly do not like counseling, I think he needs it in order to avert depression, so I'm requesting it for both of us. He has made a remarkable turnaround in that he is allowing me to participate in all of this with him. I guess it had to get so bad that he didn't want to make the decisions alone.

We have no appointments today. But hopefully we can take care of a few errands we need to make. Need to spread them out over the next few days so that we limit his activity and exertion levels. I feel a peace about me this morning that I know is coming from the prayers of all our family and loved ones. It is good.

DW

cardiologists call

the doctor had more time to go over the cath and called and said she does not want him to exert himself at all. No activity until he has the surgery. That tells me they are fearful that he might have a heart attack before surgery which indicates it's worse than we thought.

He told his parents. They want to be here. They have not visited him at his home since 1982. Missed their grandkids graduations, but for this, they want to be here. I told him that I cannot take care of them, he is going to be my primary concern. He has a consult with the surgeon next week, so we will wait til then to make a decisions. Hopefully they will schedule the surgery then, but we have to wait for the dye to clear his system.

He is eating healty. He is testing. Glucose at 57 at 11 am today.

DW

BLAME it on Diabetes!!!

The cardiac surgeon said, and I quote word for word:

His diabetes has literally chewed up all of his arteries.

I sure hope diabetics will start to listen to me now! He had the cardiac catheterization this morning. They went in just enough to look at the damage and came right back out. So the good news is that very little dye was used in today's procedure, so very little risk of additional damage. He will get tests to verify this in a week.

BUT.....he is going to have to have FIVE bypasses done! Every artery has been destroyed by diabetes.

Not by high cholesterol.

Not by coronary disease.

BY DIABETES!!!

Now, tell me this has no impact on the spouse, family, everyone involved in his life? He will be out of work for up to 6 weeks. A minimum of a month. He could have "the big one" any time between now and surgery...or even during surgery.

the"news" has been coming in all afternoon with each visit from a doctor or a nurse as he is still in recovery. He has to modify the low glycemic menu to a heart healthy menu. Immediately after surgery, he will start with cardiac rehabilatation. He HAS to lose weight. He HAS to follow the diet. He is not going to be allowed any options. So all that is wonderful news as far as I'm concerned.

Bottom line, I still am the one to play police and monitor what he heats, what his activity level is.

But backing up. Lots of issues today with just this procedure. He was fasting and woke up to glucose at 57. Yikes! Took orange juice with the stuff to protect his kidneys Got to hospital and glucose was at 87. They started a dextrose IV. Wanted it higher.

Then, had to use an ultrasound to find pulse in his feet. Did a special test called AVI to determine difference between BP in feet and arms. Had to be at least 1.0 and that was where he was. IV drip with more stuff to protect his kidneys. His pain shot up because he couldn't move (back and hip pain) so they called an anethesiologist in for standby in case they had to put him under during the cath (ended up not having to go this route). Couldn't administer any pain meds until he had signed all of the releases. So lots of tiny little details to consider. Excellent hospital. Wonderful staff. Thank goodness!

After the cath, they put hard pressure on the incision point in his groin for 20 minutes. We are now 3 hours post op and they still have the IV with the kidney stuff going. He cannot get up until 30 minutes after that is turned off.

I think the biggest problem for him has been the pain from his hips and back - he has to lay perfectly flat and cannot move his leg or hip. Pretty miserable, but he is handling it well.

So, let's have that famous argument now. If you take all your meds and follow your diet...you can STILL get right to where he is needing to have al 5 arteries bypassed. Why? because even if you have a NORMAL A1C.....you can be going equally high and low and have it average out to a normal. And there is no way to know this unless you test your glucose 8 times a day and also throughout the night. And for each time your glucose goes high, there is probably going to be damage to your arteries. And yet....your doctors will not pick up on any of this because your A1C is normal.

He has had a normal A1C for the last 30 years. It only went to 9.2 in December. His heart did not get to this point in the last 2 months! It has been coming on for years and that is according to his cardiologist. Yet no one ever did a thing about it until his A1c shot up....and he reported angina pains a full year after they started happening.

So just because you have a normal A1C - that does not guarantee you anything!

If you are the spouse of a diabetic who has a normal A1c.....I would recommend that you insist they test 8 times a day and ate least 2 - 3 times at night. If it truly stays normal - great. But if it goes low or high, even once, understand that it has to go equally the same distance in the other direction in order for it to average out to be normal. For instance.....if it goes up to 300 and the average is 120, then it has to drop to ZERO at least once, or go down to 50 or lower twice, at some time, to have it average out to 120.

I would have to say that a good A1C is really not a good test. Testing every 2 - 3 hours around the clock is the only thing that will tell you what's really going on. We did that back in 2006. He has not done it since I feel certain that he's been doing the high/low thing for at least the last 4 years!!! No wonder he needs 5 bypasses.

Please remember, I'm merely writing about the life of one guy, and my life as his primary care giver, and my battle to accept this "lot in life" that has been cast upon us. It is the ugly truth about what hapens to a diabetic who has passed stage 3 of kidney failure and entering into stage 4.

DW

Nervous- but not nervous

As the wife of a diabetic, I thought I would sit here today and write my thoughts about tomorrow. I tell myself over and over that it is wasted energy to worry. Yet I think you need to have some kind of plan in the event something goes wrong.

What if he has a heart attack during the procedure? Check. Have my list of people to call first.

What if he has a stroke? Check Have the medical/financial power of attny and the DNR ready to take with me.

What if his kidneys fail? Well, that's on the insurance will have to take care of, but we have space for a home dialysis system here.

What if he needs surgery in a week or so? Check. Calendar is clear the rest of the month.

What if everything goes ok and they find absolutely nothing wrong with his heart? Check. Praise Jehovah!

I think I understand all of the risks involved since he is so far progressed with his diabetes. I don't see an option, I think it's a test he has to undergo. I think my greatest worry and his biggest risk is that of kidney failure. I realize that it can come back. It can be permanent.

He does not seem to have any of these thoughts at all. It's almost as though he thinks he's going in for a simple xray and that's all it will be.

I don't think I'm really worried - I'm just trying to cover all the bases and be prepared for any outcome....if one can be prepared. I do have great confidence (too much so?) in his providers that they will make the best decisions moment by moment.

However....as the spouse of a diabetic....these are not worries that I would have ever considered before I met this man. His risk in this procedure is MUCH greater than someone who does not have diabetes. At this age, he most likely would not even be considered for this process. It wouldn't happen for another 20 years....as an average...of what statistics show us. But neuropathy and high glucose increase the damage that occurs in arteries, thus bringing this on at a much earlier age.

He does not want to make a big deal out of this. I have informed a few close friends and my family that I might need to call on them should he end up with an extended stay in the hospital. As advised, he is packing an overnight bag. He took the first does of a liquid med this morning that is supposed to help protect his kidneys. He said it was absolutely horrid. The smell is still in the house and quite rank. Interesting that something that smelly could protect anything.

I think mostly, it's hard to put my feelings into words today. Worried, but trying not to worry. Nervous, but really not nervous (because I know that no matter what happens, it will be ok). Optimistic - because I have to be that way for him to help keep his spirits high. Jovial - because he endures stress best with jokes. So a complete roller coaster of emotions today - that I probably wouldn't have if he didn't have diabetes.

Bottom line. I have learned that no matter what happens in life, we somehow manage to survive it. So no matter what happens tomorrow, it will be ok.

DW

Neurosurgeon

I'm running behind on my posts here -busy week. So, he was supposed to see the neuro at 8 am on Thursday. On Wed night, he figured out that the appt had been that morning- he missed it. I'm still not sure what I thought. I think I couldn't believe he would mess up on the dates when he has been in such pain. He never lets me see anything in writing, so, of course, I went by his word that the appt was Thurs, not Wed. He got up Thurs am and called and did confess that he had messed up. Told them how critical it was that he see the neuro before they do the cath. Amazing, they had a cancellation for that afternoon and got him in.

He let me go with him. We both liked the neuro. He showed us the MRI. Hubby has horrible narrowing of the spinal column. So narrow, I don't know how anything flows through it. He has compression of 3 vertebrae. He has degeneration in 3 vertebra. Then he showed us the xrays which show rather significant scoliosis. That was a shock!

He wants to refer hubby to physical therapy for a month and agreed that's not going to work, but needs to make the referral. Aftera month, he will go to the pain mgmt center and get steroid injection. They may work, they may not last 2 days. If they don't work, then it will be major surgery. So major that he will be referred outside the HMO. He said that could happen as soon as 3 months.

So it's good that he has a plan. I think the cardiologist is going to recomment bypass surgery as it looks like he can't be put on blood thinners in the event he needs back surgery. He has the cardiac catheterization on Monday. So, a lot going on at the moment.

He is still doing pretty good with the new low glycemic menu. Now if we can just get some motion in him. I agreed that whatever physical therapy tells him, I will do it along with him to help him out. He will make the call to them after the cath is over.

Life seems to be changing by the moment.

Oh, he had bad low, down to under 50, yesterday. Have started to keep fresh orange juice in the house for moments like that. He managed to come of that one in about 20 minutes.

DW

still 9.2

Neil wrote: I have read your long letter, and I can truly say this is very sad for you and me. You see, as a type 1 diabetic, I once thought I could make a difference in this world. I made myself an expert on the disease, and considered my disease a blessing because I had the opportunity to study the human metabolism first hand. I could compare animal studies and my own cause and effect. I tried and tried to help diabetics. I most received verbal stones like it is your way or the highway. Or everyone is different. It works for you but ..... I finally told my wife, despite I became an expert, not even the doctors want to listen to me. I never see a doctor myself because I have no reason to see a doctor. I just inject insulin every two hours 24-7 and limit red meat and carbs that rush into the system. I exercise a great deal, but that is easy for me. You see, I have always been an athlete.

I now conclude that I have a unique set of genetics. Not aht my diabetes is so different, but because genetics has instilled on me a powerful, will, determination, committment and perserverance to live not just healthy, but healthier than any one else, even non diabetics. I have pretty much accomplished my personal goals. But I have failed horribly to bring other diabetics down my path. After being diabetic for 40 years, I would think some one would believe me just by looking at my results. I have been studying the difference between listening and hearing. If my listening is correct, most want some one else to fix their health. I cried when my niece died from diabetes, and I am greatly saddened for you, your husband and ll those who I tried to help but will not believe a word.

Too many diabetics live a lie. Yes it does take a committment, but it is doable. I have made myself an example to my children and I have now agreed with my family, my efforts are pointless and futile. No one will ever believe a word I say. I feel like an island in a world when diabetics could live in perfect health, but they too often do not.

I love my childrem, I love my wife and I love life. I must now go forward and realize I can not do anything for anyone. I just do not have the leadership skills.

Neil, I'm not sure what to say except that I agree. My husband doen't "think" he can get "well", so he doesn't even want to try. I have to tell you thought, he is testing 3 times a day. The nurse from endo is making him! She emails and wants him to download his results. His new little tester won't lie. So that is a change for the good. They gave him a new tester, renewed his 2001 Rx for test strips (can you believe it had not been renewed since then?) and have him testing.

His latest A1c is still 9.2. NOT good. Today, he went to a deli for lunch and instead of picking a whole grain bun, he picked white bread. Not low glycemic. Sigh. I don't know what to do with the guy. He knows his sugar is still high, yet he still makes bad choices when eating The deli was good because they did offer whole grain buns. He just picked what he was hungry for at the moment. I have to "give up" to keep from going nuts! LOL!!!

The echo results are good. No indication of a major heart attack. But the are still planning the cath for Monday. In the meantime, I'm filled up the calendar this week with activities so I don't think about all the "what-ifs".

DW

echo

He had it done this morning. They let me go in and watch. Totally amazing. To see the heart in 3D. I did recognize the chambers and valves, but did not now enough to determine if there was blockage or not. So now we wait for the results. He said it was pretty painless. He probably would have fallen asleep if she hadn't kept telling him to breath, hold release.

He seems to still be fighting depression and I'm still trying to keep him in good spirits. Full time job.

DW

A letter to my friends.....

This is a copy of a letter that I sent out to my friends. I thought I would share it here. You will see a different side of me. This blog is where I spew forth my anger about diabetes, my frustrations with the medical community.....and I tell it like it is. It's the side of me that my husband and my friends never see. But at this point, I thought my art pals (all over the world) needed to be brought into the loop, so here's what I wrote to them (removed the identifying factors I hope):

To those of you who personally know my husband and I, this will hardly come as a surprise. Yet I find myself fighting depression and I know he is, too. The news from the cardiologist is not good. So I will back up for those of you who don't know him.

He has had type II diabetes for about 35 years now. It's hereditary. His father has it. His grandfather and great grandfather both had it. He opted at a very young age to "blow it off". He chose a path of non-compliance.....eating whatever he wanted, doing whatever he wanted, never testing his blood levels.

When I met him, he was simply taking pills to control his blood sugar. About 5 years ago, he went on insulin shots. And I started doing the research then.

About 3 years ago, he found out that his kidney function had dropped to 50%. I went through a year and a half of crying, pleading, begging him to start taking better care of himself. But he said that he wanted to live his life the way he wanted. I decided that he had a death wish, gave up, and lost myself in my art. His kidney function dropped to 26% and he would shift between stage 3 and stage 4 kidney failure. I started a very private blog and began recording what was going on with his diabetes. It got me into a lot of "hot water" with diabetic individuals because they refused to acknowledge that what was happening to him could ever happen to them.

He never tested his sugar. His A1C always showed up normal. But I knew he was going between great highs and great lows and it was merely averaging out as normal. He refused to listen to me. I kept studying.

A year ago, his back started to hurt. He refused to see his doctor. Last May, he had what we thought was a major angina attack when we were in a remote canyon in a foreign country. At the time, I thought it was a heart attack and thought he was going to die. He was deathly ill for the next 2 days. I pretty much figured that was the last of our adventurous trips. He promised me he would go to the doctor when we got home. He never did. I gave up.

By Thanksgiving, his hip had started hurting from his back pain and he cancelled our trip and took to bed where he has been most of the time since then.

In December he went in for his annual physical and finally, his A1c was off the charts. His glucose levels were averaging about 300 a day. The phone started ringing off the hook and the "professionals" took over. He postponed everything until this week in order to have his staff here for superbowl weekend. He has been surviving on percocet the past month.

So yesterday, the cardiologist told him that the "episode" in the canyon was a heart attack and that he was lucky to be alive. She put it into very plain English....but I'm not sure how much I "heard" after that. Because of his diabetes and his glucose levels, he is at a crossroads. He needs to have heart surgery first. We have scheduled an echocardiogram and a cardiac catheterization in the next 2 weeks. He has to have both procedures done. This will reduce the amount of dye they use in the cath. The dye may still cause kidney failure and result in dialysis. His kidney levels have reduced down even farther.

Those 2 tests will confirm the path he will take, but it is most likely, because of the diabetes, that he will need bypass surgery. If he has a heart attack during the cath process, they will take him by ambulance to the downtown hospital, to do surgery that day. She said it in such a matter-of-fact voice that it was almost like this is what she is expecting to happen. They do not do heart surgery at the hospital here. She told him to pack as though he were going to stay in the hospital.

If he survives this (he does have a DNR in place), then he will need surgery on his back as soon as he can. She read the notes from the MRI in full to us. I think she said he would have surgery at the L3, L4, L5, and L6 and that it would be major and extensive. "the neurosurgeon has a really tough job in front of him if he is to fix all this." Hubby visits the neurosurgeon in a couple weeks. She wanted that visit before the cath, so the cath is scheduled after that. She explained that his spinal stenosis is part hereditary, but part caused by a type of hardening of the arteries, narrowing of cores, brought on by his high glucose levels.

On top of all of this, he has high blood pressure, arthritis, gout, and several other issues that can all impact surgeries.

My prayer is that Jehovah's will be done. I would ask that you pray for the same. And that his spirits be lifted up. He was in a tailspin depression last night and I was fighting it myself. It is up to me to remain in good spirits and keep him as cheerful as I can. The cardiologist was incredible. She explained to this that this is not his fault. His diabetes is genetic. His heart disease is genetic. His father and mother have both already had stints and bypasses done. He simply chose a path that brought him to this point at a much earlier stage than he might have been, but there isn't even a guarantee on that. She told him that he absolutely has to counsel his kids that they and their kids are already on this path and that it simply doesn't matter how well they take care of themselves, they may end up in the same place because it is in their genes.

Because I have been studying and researching, I have known for the last couple of years just how precious our life together is. He can drop to stage 4 kidney failure at any time and have to go on dialysis. I know he will not opt for a kidney transplant. I know that we probably have no more than 10 years left. I have known that the key has been to keep him at stage 3. He has never understood that. Until now. He has finally agreed to a low glycemic menu which I have been doing since December. He has joined me...."kicking and screaming" every step of the way. But he is finally starting to make healthy choices when it comes to what he eats. He needs to exercise....but literally cannot because of the pain. He discussed that with the cardiologist yesterday and she agreed it was part of the catch 22 he has himself in at the moment.

I know that I am scared to death. I am putting my heart out on my sleeve here today for all of you to see. A side of me that I rarely share with anyone else. But for this journey, I am calling in all my markers. I have told my family and they will all be here for me. I may call on you that live close by. I know you are all more than willing to help. But as the cardiologist explained the progression of what is ahead for us, I think I will save most of your offers for his back surgery. If we make it through the heart surgery, I think his greatest trial will be the back.

I knew that 2010 was going to take a different turn for us. I knew he was going to need heart surgery and back surgery. I have been trying to prepare us for that. But we were both completely thrown off track when she explained that he had already had a heart attack. She said, "9 months ago? It's time we deliver this baby!" It hit me that the last 9 months have been a complete gift. And that each day from now on will be yet another gift.

He does have a goal. To survive until April. His first (and probably only) grandson is due then. I'm hoping we can get through this and be on the road to recovery by then. His second "goal" is a trip the first of May. He wants to buy the tickets today and I think I will let him - just because it will be more incentive for him to be in travel mode by then. Not realistic at all.....but money well spent in "inspiration".

I wonder about my art. What I will be inspired to design. When you have to travel a path you did not chose and do not want....I suspect that art can still heal and help. I'm not ready to call this an "adventure", but I already know that when I look back, we will all say, "well, that was definitely an adventure!"

Finally, to R. My dear friend. Read this to H. MAKE him do whatever the doctors tell him to do. If he doesn't, he will end up exactly like this. And I wouldn't wish this on anyone.

If you are local, and come over, do not give him one ounce of sympathy. Seriously! It will just make him feel worse. He needs to have laughter in his life right now. He's the kind of guy who needs to be a man's man and that's why this is so hard for him. S is coming tomorrow and I know she will make him laugh. Kwill be over Thursday and you and I are just going to have to be plain silly!! So now that you all know exactly where I am....we can get back to the "art of playing" - it truly heals.

------------

So to add to this, the more personal side of what's going on......as I remember bits and pieces of yesterday's conversation with the cardiologist, I will come back and post them here.

She asked him if he had high blood pressure. He said "no". She looked at me, I looked at him. He said, "well, I am taking medicine to keep it down". She looked at me. I looked at him. She said, "You have been diagnosed with hypertension and cardiovascular disease. You HAVE high blood pressure."

I mean she called a spade a spade. Yet I think this is a good example of how he has rationalized everything.....and what I have had to deal with. He has never admitted that he has high blood pressure. He feels that because his numbers come out good every time he takes it...he is "normal". The pill that he takes to keep it normal doesn't count.

Diabetes has been the same way. Because his A1c has been normal in the past...he didn't really have diaetes. He could eat anything he wanted. The pills and then the shots he took didn't really count.....it was the A1c that counts and as long as that was normal....he could eat anything he wanted and he never had to test his glucose levels.

Perhaps that will help to explain the logic he has used for the past 35 years in dealing with his disease.

She told him that he was lucky to have me. That he needed someone to constantly remind him what he could and couldn't do. I think she was preparing both of us for the trip we are about to embark on.

DW

changes

Cardiologist visit today. I went with him. Second time he's ever agreed that I go with him. Absolutely shocked at the number of couples in the waiting room. Liked the doctor just fine. She thinks he has already had a heart attack. cardiac catheterization scheduled and an echocardiogram scheduled. She talked about the dye causing additional damage to the kidneys including kidney failure. She gave us the worst case scenarios - I will hope for the best case. Most likely, he will need to have bypass surgery done. She proposed that he see the neurosurgeon before doing the cath.

She explained to him that this is genetic. His dad has heart problems. There is nothing he could have done to prevent this. But the path he chose of not taking good care of himself brought it on sooner than it might have been and now that choice was "snapping him in the butt." She told him that he has to eat right and loose weight. No other option. He seemed to listen. Tonight he ate a salad.

She was tough, firm, and fair. I hope he will listen. And because I went, he can't tell me something different. When I mentioned spinal stenosis, he said he didn't have that, only a narrowing of the column. So she started reading out of his medical record and quoted, "major spinal stenosis". Once again....did he forget, never "hear" the other doctor, just in denial? Hard to say. But she "got it" almost immediately and started asking him even more questions.

When he told her about the angina attack he had last May, she asked him how bad it was. He said, pretty bad. She looked at me. I said, "he had diahrrea and vomiting for 2 days afterwards and that he didn't leave the hotel room. She said, "that was bad." She "got it" that the pain is keeping his sugar elevated, that he needs to get his heart fixed before his back, that he needs to get his sugar down to do either, but the pain is keeping it up.

I wonder how much of what she said he will remember in a couple of weeks. If it were me, I'd be scared to death. He seems to be treating it like a normal business day.

He also agreed that I can go with him tomorrow to the endo visit. Major changes in him. Major.

DW

Week long high

Phil wrote:

Dear Wife of a diabetic...I'm the husband of a diabetic (some 30 years). I'm searching for an out let of "am I the only one out here with these issues....and I found this site and read a little of the same descriptions of my life....hummmm maybe I not the only one who is out here...I'll book mark and come back

So, while I'm the wife of a diabetic, I'm certain that women who have diabetes can be just like my husband when it comes to lows, denial, no memory, not caring for themselves. Hadn't really thought about that too much. But I'm sure if a diabetic doesn't take care of themselves....the end results would be genderless.

It has been such a hectic week around here. Hubby's staff has all flown in and there is such a flurry of activity going on. And he is ever so unaware of what he is doing to himself and his body right now. First, he is so pumped up on adrenaline from excitement - he is the "boss", the "leader of the pack" and "off on the hunt" to show them all a great time. Adrenaline = high glucose.

Then, he is pumping himself up on percocet. I gently reminded him that his Rx is only for 2 months and when it's out, he can't get it refilled. He said he will deal with that later on.

He is not getting enough sleep. He is eating anything he wants.

But yet I know he is in severe pain. He got up at 5 am today and had me get up with him so I could make out an order for tomorrow's lunch. Of course, yes, this is a last minute change. I don't mind. But he couldn't make it back up the stairs to get his cell phone....and then I had to make a second trip up and down to get something else he forgot. I simply smiled and said, "you owe me!" Couldn't do much else as we have houseguests this week and I have to present myself as the endearing "bosses wife". LOL!!!

Not sure what time the houseguest leaves Monday, but I know hubby has to go to the cardiologist that afternoon. Will be interesting to see if he crashes before he gets there. I'm anticipating next week will be a bear. He will be depressed when his staff leaves town....and he will be crashing from the high of this week. It's interesting that I am to the point where I can predict what is going to happen to him based on his highs and lows and what's going on in his life

So, he's off with his staff today on a sporting outing which will be quite physically exertive. One of the guys has already agreed to drive back. This evening is a social event with about 40 people. Tomorrow, they will all be here for most of the day. I'm wondering how much he can push his body before something major happens. I wonder if his glucose levels are so high that he won't even remember much about the week.

DW

Pain

So, the percocet is working. His pain is getting under control which is lowering his glucose, he's moving and feeling better.....even smiling. After 2 months in bed...we are slowly getting back to some type of "normal". And it is great!

But, he also has his his staff in town for a retreat of sorts this weekend and I think that will keep him in good spirits thru Sunday. I'll take what I can get. Monday is the cardiologist.

So far, he has stuck to the Low GI menu which I assume is helping as well.

Amazing how pain can throw a diabetic so far out of whack. Again, that roller-coaster merry-go-round vicious cycle. The more the pain, the more adrenaline, the higher the glucose, the less movement....it just compounds and explodes the problem. Sad that his doctors wouldn't give him any pain meds until after the MRI.

Was a good weekend all-in-all.

DW

percocet

Ah! How much do you take before you are addicted to it? Ok, let me reword that. How much does he have to take before I get addicted to him taking it? LOL! I'm already there!

Who knew a pain pill could give me so much relief when I don't even take it? As long as I drive, and he "loads" up on drugs, we are finding that we can get back to the routine of living. Ok, of doing at least one thing a day perhaps!

Today, we made it out to lunch and then to a movie. Have not done that in a few months and I miss it. Of course, by the time we got back home, the percocet(s) had worn off and he went straight to bed. He's been there ever since, about 5 hours now.

We have started the Low GI menu and so far, it's going ok. We're starting to decide just what we can eat at which restaurangs, the rest will be here. We've actually sat down and gone over a menu for a full week. Tomorrow we are going to see if he can do anything on the wii workouts while sitting down. It will at least get his upper body moving a bit. I hope.

It was a good day overall.

DW

A carb is a carb is a carb.....or is it?

Some idiot doctor told my husband that "a carb is a carb is a carb". I disagree!!

While it may be true that the word “Carbohydrate” can be applied equally to all types of carbohydrates, there are different types of carbs and they act quite differently.

They are all starches.

They all eventually convert to sugar (glucose).

There are 3 common types of carbs in foods:

Sugar
Starch
Dietary Fiber

The glycemic index (GI) is a measure of the speed at which a carbohydrate raises blood sugar levels. From this, a high glycemic carb is one which raises blood sugar levels very quickly. The spike in blood sugar creates the insulin response which means that your body will produce high amounts of insulin to return your blood sugar back to normal levels. This is done by converting all the glucose into fat which gets stored in your body. This results in low blood sugars and the craving for simple carbs.

High Glycemic Carbs used to be known as simple carbohydrates. They are already in their simplest form, easily digested and enter the blood at a fast rate. They also raise blood sugar levels fast.
candy, cookies, white bread, bagels (refined/processed High GI carbs)
potatoes, corn, carrots, pumpkin, (unrefined High GI Carbs)

Low glycemic carbs used to be complex carbohydrates. They release glucose into the blood at a slower pace, cause a smaller rise in blood sugar.
Whole wheat pasta and bread, spaghetti (refined Low GI Carbs)
plums, peas, spinach (unrefined Low GI Carbs)


These are only quick samples. Complete lists can be found by googling the topic.

The carbohydrate cycle in the body:


1. When you eat sugar or any other carbohydrate, it is converted into a simple sugar, which goes into your bloodstream.
2. We can't make sugar in this form. What is required is insulin, which makes it possible for blood sugar to be absorbed and metabolized by our cells.
3. When too much sugar enters the bloodstream, the pancreas overworks to produce enough insulin to metabolize the sugar.
4. If you regularly eat too much sugar, refined carbohydrates or just plain over eat, the pancreas "learns" to over produce insulin.
5. The pancreas continuously drips insulin into the bloodstream, gradually reducing the blood sugar level; eventually lowering it too much.
6. The result is that a couple of hours after eating too much sugar or too many carbohydrates, you may experience a low blood sugar level.
7. In this state, people may feel irritable, fatigued, stressed and hungry. Then, they may want something to eat, and usually its sugar or something sweet they reach for.
8. If you then take a pick-me-up sweet, it further stimulates insulin production so that, after the initial rise, the blood sugar level drops even more than previous.
9. This is experienced as still more stress, more hunger, and the cycle repeats itself.
10. If these eating habits continue, the pancreas - overworked and stressed - slows or stops insulin production. The result is high blood sugar, sugar in the urine, and even diabetes.

So, simple math here. If your pancreas no longer produces insulin, or not enough insulin, you have to either inject it into your body, or take a pill. But one way or the other, you have to get it in there to get the sugar out of the blood and into the muscles.

Artificial sweetener acts almost the same way. While it has no "sugar" in it...it acts to supress the appetite. Combine that with low blood sugar, you get hungry, grab for something sweet to give you energy....and you set the same cycle into motion.

Stimulants like caffeine, stimulate the adrenal gland to produce epinephrine.
Epinephrine stimulates the pancreas to secrete insulin, lowering blood sugar level, but if the pancreas can't produce insulin, then the stimulant really acts to raise blood sugars overall.

Research has shown that excess consumption of aspartame slowly begins to destroy neurons. Not so good for a diabetic with neuropathy.

The dangers of diet soda:

The brain has a conditioned response in reaction to something that is sweet called the cephalic phase response. The body perceives that the arrival of something sweet means "energy". When the taste of an artifical sweetener such as aspartame stimulatesthetongue, the brain programs the liver to prepare for the arrival of new energy (sugar) from outside.

The liver, in turn, stops the manufacture of starch and protien from reserves in the body, and instead begins to store the glucose (energy) that is circulating in the blood stream.

Foods having a sweet taste without the accompanying calories stimulate the taste buds, creating and urge to eat and thus overeat.

It is the liver that produces the signals and the urge to eat The cephalic phase response triggers the release of insulin, which stores sugar in the blood stream.

This creates low blood sugar which leads to the development of increased cravings and appetite.

Studies have shown that htis urge to eat more food after using artificial sweeteners such as aspartame can last up to 90 minutes after the meal or snack.

so while aspartame itself may not have a GI impact...it still has an impact on what happens inside the body.

If you read the book "Sweet Poison" by Dr. Janet Starr Hull, she will tell you that she is convinced that long term use of aspertame can cause diabetes. Hmmmm......and it doesn't have a single carb in it!

Then there's a US healthy study released 31 Oct 2009 that will tell you regular consumption of artifically sweetened sodas can affect kidney function over time. (OK, so to some of you reading, note that the word here really is affect, not effect!) (LOL!) AND this same study also showed that artificial sweeteners can trigger high insulin levels which promotes the storage of fat.

Yet again....where are the carbs?

HUGE NOTE TO SELF - He doesn't even need to eat to get himself into the roller coaster cycle of highs and lows....all it takes is a diet coke!!!

Another thought on soda. I use it to clean the acid off my car battery. Ever try that? Works just great! I also use it mixed with water to polish silver. Whatever it is that cleans my battery and polishes my silver....is being filtered through my kidneys every sip of the way. So for a diabetic with low functioning kidneys like my husband that still downs 8 or 9 cans of diet soda every day....just consider what it's doing to him!

My mom is a retired nurse practitioner. I knew plenty of diabetics when I was a kid growing up at home. We NEVER took them anything remotely sweet. Yet today, doctors, nurses, nutritionists, etc., are all telling their patients the same line: "a carb, is a carb, is a carb." Do you think it could be that their source of income is derived from having sick patients? Consider the small possibility that diabetes was wiped off the face of the earth? Could it simply be that the medical industry is actively wanting to keep this disease around? If they really wanted to eliminate it, wouldn't we be fighting to take sweeteners off the market? Get good nutritional education in grade schools? Start with a healthy cafeteria menu?

Well, at least tell existing dibetics that there are HUGE differences in how carbs are consumed in the body and that perhaps, just perhaps, a piece of candy is a whole lot worse than a stick of cheese!

Conclusion? A carb is NOT a carb, in fact, it doesn't even have to be a carb, it can be a fake carb (sweetener) when it comes to someone who has diabetes.

DW

Getting caught up

I've been gone for the past week to an art show and I simply had a wonderful time. The manufacturer that I design for hosted us in a wonderful suite of rooms, treated us to incredible meals, and the weather was just perfect for the most part! I got to spend time with fellow artists and then simply just let my creative juices flow. So much to catch up on here:



Mary wrote:

Hi DW,

It is so frustrating to deal with this aspect of disease too. I don't know if it is denial or if my dh genuinely does not remember things. I have to wonder if other people with chronic illnesses behave in the same way. Is this a way of coping with their disease? To conveniently "forget" about important health advice.

It is as though my dh has selective memory. We are also dealing with sleepwalking recently. I am not sure if it is a side effect of the drugs he takes. During his last sleepwalking episode he lost his glasses. It has been 3 days and we haven't found them (thankfully we has a spare pair).

This past summer I went to his medical appointments with him and I took notes. Even with my notes in hand he still denied that the doctor said those things. I finally gave up on trying to help him manage his health care. No, I can't help him but I can change the way I think about things. He is a young man, 45, and has so many health issues.

I have been dealing with this for so many years that I think it is normal behavior for him. Some days I want out of this marriage so bad I can taste it.

Thanks for your blog and letting me vent.

Mary, I think we all know exactly what you are feeling. Some days we all want out of the relationships. But I think it's not really the marriage that we want out of, it's the diabetes that we want to get away from.

I think denial can be applied to the part of hubby that doesn't want to deal with what's going on with his own body. But the lack of memory has to come from glucose levels. It's not normal because I can remember when it wasn't a problem....back when his gluclose levels were good. The combination of both issues is quite a nightmare at times. So for me, it's simply a matter of taking this one minute at a time, making sure that I take care of me, getting away like I just did (about once a month if I can) for 3 or 4 days at a time so that I get a complete break from everything...and then just focusing on the present moment and not worrying about the future.


and then Florence found us and posted:

Hi. I just found this blog today, and it is a lifeline. Forget the other wacko who accused you of being mean. She is in the lala land where DHs take care of themselves and do not lie through their teeth. Good for her.

I will be back soon with the all story.

I had to giggle at the term "wacko". LOL! I truly think that those who are diabetic, who have highs and lows and totally forget what they say and do, those who are in denial, those who are so young and inexperienced....will one day be reading this blog as well. Or at least their spouses will. And that probably scares the crap out of them! To think that your spouse wakes up every single day and asks themselves if they stay or leave, if they go for counseling to deal with it or not, if they ignore it or not....has to be quite frightening. So instead, they claim "we" are nuts, evil women, unkind and uncaring and blast us away and tell others to stay away....don't read that crap! I think it's quite sad that they refuse to even try to understand what it's like.

Perhaps the best way to relate is how some gentiles treat Jews. They don't accept their religion, blame current Jews for the death of Jesus that occurred 2000 years ago (I never quite understood that one), walk away when they see a man wearing a yamaka....and so on. Sort of a limited perspective on life when you don't bother to learn what other people believe and feel. And that's exactly what diabetics are doing when they refuse to read this blog. Their loss, not mine, because I read what they write all the time.

Note to Tom's Wife. I was in Las Vegas last night. 2 hour layover at the airport. Wonder if we passed in the halls!

So status report for us. Hubby survived my trip, but he said he had a day where he could not walk at all. I think it was the day after he went to the grocery store on his own. Usually I go with him and yes, he had plenty of food here, but wanted something else (chocolate? Potato chips???) He did pretty good today. Made it downstairs for about 3 hours, then back to bed. He commented that he really wants them to do the surgery on his back and doesn't know if he can stand the pain between now and then. I asked if his sugar had started to come down yet and he said "no", That means it is still hovering around 300. They did increase his insulin and the next step will be to switch to a more potent version.

I asked if he wanted to start the low glycemic diet tomorrow and of course, he said no. Now he wants to wait til after Superbowl Sunday as we have guests coming in that weekend. I suggested that we go ahead and start the diet tomorrow and he could go off it just for that Sunday. He shook his head. So this is my indication that he's not going to do it at all. But I have a plan. I told him we need to go grocery shopping tomorrow and all I'm going to get are low GI foods. And then I'm going to refuse to go out to eat with him. He can go out alone if he doesn't want what I fix here. I've started planning a menu tonight. Will be interesting to see what happens.

Sometimes you just gotta take the bull by the horns. LOL!

DW

memory???

His doctor called this morning. The MRI shows a narrowing of the spinal column. Going to prescribe him percocet for the pain and has referred him to a neursurgeon. May require surgery, or an injection.

So I asked him if he had heard from the endocrinologist yet (thinking that adding another drug can't help his kidney function) and he said, yes, I talked to her on the way home Friday, don't you remember?

I'm thinking, no, I don't remember that at all. I said, "I thought that was your diabetic nurse?" He said, yes, that's her.

So I very calmly (thinkin he's having a morning low - getting a little testy?) said, "I know you talked to her, but have you heard from the endocrinologist?" He said, "I never said I heard from the endocrinologist."

OK, deciding to prepare for an all out argument, I just go for it....

"You said you had a referral to a cardiologist, and to an endocrinologist."

He said, "I never said that all. I have a referral to a cardiologist and my diabetic nurse called me."

So WHATEVER!!! I dropped it right there. Who knows what his doctor says? Proof he is going to continue to lie to me about all of it. That he is going to say one thing one day and change his story 3 days later so that he can continue to do exactly what he wants to do whenever he wants to do it.

I can't help him. Seriously!!! I realize that he is starting into a low this morning and the best thing that I can do is merely walk away. Stress doesn't help. He's supposed to have today and tomorrow off from work and his boss is back on the phone with him with their "special" "emergency" project.

Glad I have my art!

DW

Glycemic index test.

Here's a great test I found online - answer the question before you read the answer! Then ask these same questions to your spouse.....see what they don't know! Mine missed over half. Quite the wake up call!


1. Potatoes are a better food for diabetics than ice cream. Yes or No.

The answer is no. Potatoes measure 98 on the glycemic index. Glucose measures 100. Potatoes and some other foods are similar to glucose in the rate that they enter the bloodstream and result in rapid rises of blood sugar. Ice cream surprisingly is about one half the measure of potatoes on the glycemic chart.


2. Whole wheat bread is a lot better for diabetics than white bread. Yes or No.

The answer is no. Whole wheat bread and white bread are about the same on the glycemic chart. The type of fiber in whole wheat bread is mainly called insoluble fiber. This type of fiber is important to the body, but it is not the main type of fiber that slows down blood sugar releasing into the bloodstream. Additionally, whole wheat bread and white bread both metabolize high amounts of glucose into the bloodstream. For both these reasons whole wheat bread is not much better than white bread in the rate which it raises blood sugar.


3. Orange juice is better for a diabetic than carrots. Yes or No.

The answer is yes. Orange juice is twice as low on the glycemic chart as carrots. Another observation is almost all the vegetables like carrots, potatoes, parsley, and others that have parts of the plant that grow below the ground are high on the glycemic index. For example, on the glycemic index only sweet potatoes and yams are moderate. So a rule of thumb might be to avoid eating root vegetables unless you are sure they only raise blood sugar moderately. Also go very easy on fruit juices. Juices can lead to insulin surges. If you want to drink juice consider having it during a meal with fiber. The fiber will slow down the absorption of sugar in the blood. Another way to slow down absorption of sugar from juice is to add multi-fiber supplements to the juice (the body needs different fibers and this is why multi-fiber is advised).


4. Brown rice is much better than ice cream. Yes or No.

The answer is no. Ice cream is about 40% better than brown rice on the glycemic chart. (Many diary products are high in fats. Consider low-fat and non-fat diary products when possible.)


5. Soybeans are about the best food for a diabetic. Yes or No.

The answer is yes. Soybeans are an excellent food for a diabetic. It is about the lowest food on the glycemic chart. In addition, it is high in protein. Diabetics need more protein than a non-diabetic does. For more information read the article "Diabetics Need Additional Protein" and Understanding High Protein Diets for Diabetics". Essentially diabetics are in a chronic catabolic state (a state of constant breakdown) and protein is needed to repair this constant breakdown. Diabetics need more protein to keep up with the rate of breakdown and destruction going on in the body. Soybeans are an excellent way for a diabetic to get protein. Also soybeans are loaded with fiber, including the soluble type that slows down rising blood sugar. Additionally, soybeans may improve thyroid function. This can assist in keeping metabolism high, which can aid in keeping weight off. There are many other benefits of soy products. We recommend a diabetic consider eating soy products at least once or twice a day (except soy sauce and soybean oil, which contain very little soybean protein).


6. Whole-grain rye bread is 40% better for a diabetic than brown rice. Yes or No.

The answer is yes. About the best bread a diabetic can eat is whole grain rye. It is about 40% better for a diabetic than brown rice on the glycemic chart.


7. Russet potatoes are better for a diabetic than fruit. Yes or No.

The answer is no. Russet potatoes act almost as fast entering the bloodstream as glucose. Fruits contain fructose and this is released much slower into the blood than glucose. Fructose on the glycemic chart is a 20. It might be a good idea to use fructose as your sweetener whenever possible. For example, use dried fruit to sweeten cereals and avoid buying cereal with sugar added. Another sweetener diabetics might consider, found at health food stores, is called Stevia. It is an FDA approved "dietary supplement for nutritional benefits." The extracts of Stevia are approximately 30 times sweeter than cane sugar, or sucrose, yet has only 1/300 of the caloric value. It can be used both hot and cold and thus can be used in baking. It is water-soluble.


8. Wholegrain foods are better for diabetics than foods in the bean family. Yes or no.

The answer is no. Beans are much better on the glycemic index than whole grain foods.


9. About the best foods for a diabetic are bread, cereal, potatoes, rice and pasta. Yes or No.

The answer is no. Most bread and starches quickly convert into glucose, which can raise blood sugar levels rapidly. This is not exactly the way people perceive grains. However, grains can lead to weight gain, as well as blood sugar surges. Diabetics need to watch their grain and starch intake carefully. Most grains and starches are high on the glycemic index.


10. Oatmeal is better for a diabetic than corn flakes. Yes or No.

The answer is yes. Oatmeal is about twice as low on the glycemic index than corn flake.


11. Honey is better for a diabetic than fructose. Yes or No.

The answer is no. Honey is nearly the same as glucose on the glycemic index. It is an 87 and glucose is a 100. Fructose is only 20! Beware of honey. It is not a food diabetics can afford to eat often.


12. Brown Rice is better for a diabetic than spaghetti. Yes or No.

The answer is no. Spaghetti is much lower than brown rice on the glycemic index.

13. Diary products are high in sugar. Yes or No.

The answer is no. Diary products are not high on the glycemic index. It is advised on diary products to check the carbohydrates and fat content.


14. Bananas and raisins are better for a diabetic than orange juice. Yes or No.

The answer is no. Orange juice is better than bananas and raisins on the glycemic index. Be careful with juices. The sugars in juices can cause insulin spikes. It is advised to take juices with fiber supplements or fiber meals. Drink only a
 little juice per day if necessary.

Just google glycemic index if you want to know. Problem is - you can't force a grown man to eat his veggies!!!

DW

Diagnosis

His complete diagnosis as of this week:

Angina Pectoris
Intermittent Claudication
Diabetes Mellitus, Type 2 w/complications
Chronic Renal Failure
Diabetes Type 2 with severe chronic kidney disease
hypertension
hyperlipidemia
gout, tophaceous

Phones been ringing off the wall. All of his care providers are calling. Apparently his A1c is over 9.

I heard him tell his diabetic nurse that he takes his insulin at 8 am, 6 pm and 10 pm. Unfortunately, the sad fact is that he takes the 6 pm at 10 pm....therefore only 2 shots a day, 8 am and 10 pm. I'm pretty sure I wrote that as a note here about a year ago.

I quietly told him that he really needs to be honest with his nurse. He cannot expect his doctor to give him a treatment plan that will work if he is going to continue to lie about what he does.

He told her that he would test numerous time a day. That was yesterday at noon. He hasn't tested once. I'm sure he will just make up a chart and give it to her. While I can't blame him (I don't think I'd want to prick myself that much either), I don't know how he thinks they can help him when he's not willing to be honest with them.

Not giving up on him yet!

DW

It's a good day!

He just got back from his FP MD

1. a referral to an endo.....FINALLY - after asking for one for 3 years!

2. a referral to a cardio - the pain might be vascular

3. a referral for an MRI on both his back and his hip.

And a recommendation for bed rest.

It's a good day!!!

DW

No sex the rest of my life???

Tom's wife posted about never thinking she would give up sex at such a young age. Got me to wondering.

How many of you have found that there is no sex in your life?

I'm talking intercourse here. Nothing else "counts" for this poll.

So Just post "yes" if you have had to give up sex. No other comments needed unless you want to explain.

DW

Read label first!

Yesterday, he could barely move at all, the pain in his hip was so intense. But it doesn't make sense to me. When he sits, he is constantly shaking his whole leg, moving his foot from the right to the left in a rocking motion.....which is movement. So he can sit and move it with less pain that when he stands to walk. Not real sure this is sciatic nerve like he thinks.

He did agree that when he sees the doctor tomorrow, he is going to tell them that "something" has to be done.

I honestly don't know how he can live with such intense pain. I asked him if he had thought about what he might do if the doctor ordered complete bed rest. He said "no". Credit to him for being so honest! But at least the thought is there now.

He also said that heat or cold don't seem to help at all. Just finding a comfortable postition and staying in it as long as he can stand is the best he can do.

His mobility has definitely been limited.

I know that comments are quite serious, but Pam I have to tell you that you gave me a chuckle! I doubt it matters if a spouse has diabetes or not.....a prescription bottle with a warning label should be a prerequisite!!! However, chuckling aside, I think more people writing about the side effects AND affects of diabetes on spouses, children, parents....all of it would be nice to have. There's not all the much out there even today. Perhaps because the stress of recalling it to write about it can be quite painful?


Pam wrote:

I wish I had read your blog BEFORE i got married!! It would have told me what was instore for me and I could have made the "stay or leave" choice when it was easier. Now I've been married for 4 yrs (together 10) and it is certainly a roller coaster. DH is 45 and getting worse every day. I didn't know much about being a diabetic, so when he was at an "angry" low/high i simply thought he was just being an A$$hole!! :) He was just put on insulin, (finally got a Dr that had a clue) and you would have thought the world was going to end the way he moped around for 2 weeks. I try to tell him, if you can't do it for yourself at least do it for your kids. We have 4 kids(2 2.5yr and 2 3 months) that don't understand Daddy really loves you, he just doesn't care to take his medicine, that's why he's mean. He looses his patience too quick with them, and i simply rush in and take them away. Talk about tiring. I've tried to explain that he NEEDS to take care of him self if he wants to see his kids grow up. Yet he still chooses to eat whatever whenever, not take his med and expect ME to do EVERYTHING. I work full time, have 4 kids to tend to, i cook, clean, etc... and he does...yup nothing!! When i found your blog (and Tom's wife) it makes me happy to see i'm not the only one. I am only 32 and still want a full life. I'm not sure how much more of this roller coaster i can take. Thanks for writing!!

Don't you wish our spouses were like a prescription bottle and came with some kind of SIDE EFFECT LABEL... will ruin your life, suck all the happines away, yell at you for no reason, fall asleep at the wheel.... etc? LOL!!

I can't tell you how sorry I am to hear that he is only 45 and doing the roller coaster ride. That's not good. I feel for you and the kids. I know how it is here when my husband has a low and I am just so grateful there are no kids to witness it. But I do know that his children saw it when they were growing up (his previous marriage) and they simply see it as verbal abuse. The honestly hate their dad to this day and don't have much to do with him at all. Part of the reason I keep this blog is in the hopes that one day they might ask to read it....and will come to understand that his anger was never directed at them and that he has no clue that he did what he did to them.

I am sure you have already seen a counselor. They will most likely want to make sure that first and foremost you and the kids remain safe. One of the best pieces of advice I ever received was to make sure I had a "safehouse" to go to....and that I had an emergency exit route. Just in case he ever grabbed a knife..... After knowing that you have a safety plan, they will start you through the steps of counseling. I do think it would be great for the kids to see a diabetic counselor.....but find one who understands the highs and lows of glucose levels.

I still contend that you can't change him. You will wear yourself out taking care of 4 kids and him and working. Something will break. If you were to take one of the many stress tests available online you will see that you are close to overload.

No, I'm not trying to be a therapist for you at all. And because he doesn't want to help himself, chances are your situation isn't going to improve.

Write it all down. Ten minutes a day. Start a blog or journal. Be honest with what you write. Don't mince words. It's always good to have a record of behavior patterns during highs and lows. If he ever did physically harm you or the children, a diary is really good to have. But it's also a good release to write down your thoughts, your emotions, your anger, your grief (the loss of the man you married as he was then)....to "get it out of your system". Does not matter that others might not agree, might not see it your way.....it is simply your diary of what happens to you. And once in awhile, someone will comment that you have helped them just a little.

I have a post here somewhere that talks more about the relationship my husband had with his diabetic father and his non-diabetic children. Don't know if you could search and find it. But it's an interesting relationship now that they are adults. He's had diabetes since they were about ages 2 and 3. It's all they have ever known.

In the end, you still have 2 options. Stay or leave. :o) and I know you have read my "definitions".

DW

Looking at the "whole"

Tom's wife: Thanks for your post!

Your last paragraph really hit home. It would be nice if medical care providers and mental health therapists would actually look at the whole unit. I've said that before so many times. From what I've seen, my husband has a general practice doctor, one for his neuropathy, one for his arthritis, one for his vision. He has seen a dietitian. He has a really good pharmacist who double checks drugs all the time. He does not have an endocrinologist. A couple of these are referrals outside his HMO. As far as either of us can tell....none of them ever communicate with each other.

It seems that the mental health therapists have all simply explained the disease, given it a lot of fluff terms, told him the signs of depression to be on the lookout for. Left that up to him to self-diagnose!

No one has ever once asked him about his personal life or his functionality at work.

When he has a low, they want to change his meds to get his levels as even as they can. There is rarely ever a follow-up visit.

He had ONE nurse who actually took the time to chart his highs and lows and make recommendations to his doctor to change his insulin.

They all only seem to take care of the 1 or 2 things that their "speciality" calls for. They tell him that his GP is the one who oversees all this, but the GP only does a general physical when he visits him and will ask, "how is your diabetes, any changes?" and he will say "no" and that's the extent of their conversation.

I often wonder if it's because they have never experienced living with someone who has diabetes....that they don't fully comprehend what goes on in a "low". Doctors are no longer allowed to tell a patient that they are going to die if they don't follow a medical treatment plan. Did you know that? They can only provide you with positive, optimistic outcomes. So at best, his doc can tell him to cut back on fatty foods and sweets. But the other problem is that if the doctor were to ask my husband if he eats many sweets, my husband would tell him "no".

So you have the sad situation where a patient is willing to lie to the doctor in order to avoid the consequences.

They have told him that he is not a candidate for a pump.

The "new" dietetic lingo is "a carb is a carb" and my hubby has taken that to mean he can eat all the sweets that he wants. But if you google carbs, you can soon learn that there are different types of carbs that react differently in the body. I sure wish his dietitian would tell him that!

And I've been told by his HMO that they flat out do not provide any services for caregiver support. They gave me a video and 2 books that were pretty much related to a young person taking care of an elderly person....how to keep them clean, move them so they don't get bedsores....nothing related to highs and lows that diabetics go through, the rages, the anger....nothing at all

And finally, I'd like to get someone to tell me how to handle the situation of no memory when in a low. The nurse that provides me the best counseling has said that she doesn't have an answer for that one short of video taping him. But when we talked about that a little more, she agreed that bringing out a video camera when he was in a low would only provoke him to greater anger. She agreed that there is a very fine line to walk here and literally said, "I don't know how you do it." So, at least rather than denying it happens, she understood that it does.

And therein probably lies the whole problem. Diabetics who don't remember what they did during a low and spouses who won't/don't/can't confront them....and if we do, we are simply told that it didn't happen....because they don't remember it!

When the medical community wakes up and starts addressing the "whole" then we might find help. Until then, I do believe this dickering about words, terms, phrases, titles.....is just a way to get around addressing the real problems that are out there!

DW

Definitions

The definition of staying:

You continue to live with your spouse. The one who is not following their medical treatment plan. You continue to support them. You fix their meals. You cook and clean for them. You keep all the sugar, sweets, treats out of your life because they don't need them in their life. When you both go out to eat, you tell them that they can't have dessert because you are on a diet . You are always on a "diet" because you are trying to keep the sweets away from them. You go without cake, pie or cookies for weeks/month/years.....while they continue to eat everything they can get their hands on. When you find candy wrappers in the side pocked of the car door, you know it wasn't yours.

You become a nurse, a parent, a coach, a mind-reader, a researcher. You worry if you are doing too much or not enough. Do you let them go low or do you force feed them? You give up any hope of a sexual relationship because all of the medications they are on have brought that to an end. You don't have too, you can always have an affair....but you won't behaving that kind of a relationship with the person you married.

When neuropathy attacks the intestines and they no longer can control their bowels, you become the cleaning person you never knew existed.

You live through their lows. You make sure they are getting enough fluids. If they happen to pass out, you call 911, you get them the medical care that they need. You worry. You fret. You pray. You go to counseling. You ask them to go, too. And even when they refuse to go, you still go knowing that you can't force them to change. You exercise in the hopes that they will join you. When they get sick, you are there to care for them. As their disease progresses, you give up more and more of what used to be your life in order to attend to their needs on a full time basis. You deliver meals to them in bed. You clean up the bedding after them. You assist them with their shots. You take their blood sugars for them. Your own personal time dwindles down to a bare shred of what it once was because most of your time is consumed taking care of them.

You come to learn that counseling is simply an expenditure you no longer need. Your spouse won't go with you. Your counselor finally advises you to find something else to do with your life, so you get a job, get a goal, have something to work towards which you find exhausting because you were still have to go home and be their primary care giver.

Your friends stop inviting you to join them because they have learned that you are really only free between breakfast and lunch, or lunch and dinner. You don't invite them to your home because you are spending too much time defending the horrible mood, rants and raves the diabetic might burst forth with at any time in the presence of your house guests. And as their ability to move decreases, you become more and more of a recluse as you become just as housebound as they are.


The definition of leaving:

All that ends.

Anyone who is the spouse of a diabetic, the primary caregiver, already understands these definitions. We don't have to itemize the things we know we have to do if we are going to remain in this relationship. Apparently those with diabetes need to be told in a very systematic fashion everything we already know we have to do for you!!! We don't need to be told that counseling is an option. Most of us have already been there, done that. It almost becomes mandatory as part of the process of making the choice to stay or leave. But when you exhaust all the counseling and the diabetic is still determined to stay on their own path of self destruction.....when the new year tolls and you suddenly realize that you have been doing this for 10, 15, 20 years or more, when you look in the mirror and see the person you have become being the primary caregiver for someone who doesn't care for themselves..... there are still only 2 options:

Do you stay?

Do you leave?

Side note to those with diabetes who read my blog.

I happen to believe that the entire Bible was written by Jews to the Jews, about Jews. My belief. Doesn't matter if you agree or not. We can argue the facts for hours on end. It's still my belief!

This blog happens to be written by the spouse of a diabetic, to other spouses, about my life as the spouse of a diabetic. It's not written about anything else, for anyone else or to anyone else. Pretty simple if you ask me! My blog. My life. We can argue the facts for hours on end. This is still my life - as the spouse of a diabetic.

But if you are a diabetic and have read past posts of mine, here are some questons for you to ponder. Have there been bits and pieces in them that have made you wonder if this is your future? Do you get mad about the things I write about becasue you are in denial of some type....that the things I write about would/could never happen to you? Does the very thought that your spouse might leave you because of your diabetes scare you? Do I touch a nerve....or the possibility of a nerve....that this might be you one of these days?

Give that some thought as you read through this.

Just read here. Then come back and let me disscect her post for you.

1. She’s young. Optimistic. Hopeful! Probably thirtysomething? Has diabetes herself. Does NOT have a spouse who has diabetes!!! We’ve obviously never met. She knows nothing about me personally. Only what I write about my life as the spouse of a diabetic. Something she couldn’t possibly understand because she is not the SPOUSE of a diabetic.

2. She wrote: “but more than 24 hours after the fact and as of this posting, his comment has yet to pixelate, proving the little bird correct.” How quick she is to come to judgement! I was in a remote area visiting my brother and his family – no internet access. My brother broke his back and I go visit once a month for a week to help out. I’m really not the evil person she thinks I am and for her to jump to a conclusion because I didn’t immediately respond to a comment….well, I’d call that unprofessional!!!

Note: Sorry to have to confess, but this blog does not consumemy life. I simply come here to post my notes....so I don't read your comments on a daily basis.

3. She put (sic) after my use of the word - affect. I used that word on purpose to mean the influence that highs, lows and drugs have on behavior. I used the word in it’s proper spelling. And she did not “get”it.

I have a graduate degree and truly understand the use of the English language, so her (sic)s were wrong. Again, incorrectly correcting someone else's grammer - not professional.

4. I read through her post a couple of times and saw no solution for Gregory other than for him to seek counseling. I find that self-serving. Someone who financially benefits from providing counseling….recommending counseling.

5. She says, "how about a little more support from those people who call themselves our diabetes care teams?"

Why does a diabetic EXPECT support from other people??? Be it professional, medical, personal. It seems to me that only those with the disease try to answer this question. They are the only ones who expect the support. Do they once ever write about the support that is nowhere for those who are supporting them?? Hardly!!! We know that there are numerous caregiver support groups available. I just wonder how many diabetics attend them. Do they even begin to comprehend what we go through as their primary caregivers? Do they even care? Seems to me that it's mostly about me, me, me when it comes from their viewpoint. What they need. What they want. What they EXPECT. I don't see them writing very much about supporting the caregivers they live with!

6. She claims that she does not play the blame game. But she does. She is blaming me for just about everything in the book. I think she called me every name in the book. When you call someone else a name - that IS blame! Truly the ultimate in being unprofessional. I can tell that she has absolutely no compassion or understanding whatsoever for the spouses of those diabetics who have chosen to not follow protocol offered to them by their “diabetes care team”.

7. she wants "the people with diabetes (to) end up winning". Who doesn’t? But at what expense? I would like to know if she has ever personally witnessed someone that she loves (not herself) in the middle of a sugar low. That would have to be her spouse, her mother, her father or a sibling. Probably not. I would like to know if she has witnessed them dying, one body part at a time? I doubt it.

I would highly recommend researching and reading about Christian Scientist diabetics. They refuse all medical treatment. What this disease does to their families is quite similar to those of us living with spouses who don't follow proper medical protocol. And there for the grace of God goes every single diabetic - saved only by the meds and diet they pursue. It is a natural progression to death and if you don't follow your protocol, the things I write about will in fact happen to you, and your spouse and loved ones will be right where we ae.

8. It is quite evident that she doesn’t want any of her readers to read my blog and if they do, she is more than happy to support their denial of what life is really life if you have a diabetic in your life who doesn’t follow their care plan. No, it does not have to be like this. It is purely a choice. But it was not a choice that I made. And because I post what my life is like loving and living with someone who has made this choice, she now labels me as toxic. I’d have to argue that living in denial is probably even more toxic.

Could it be that she is just a tiny bit afraid that this might one day be her own husband? That he might decide to leave her because she has diabetes? Because he simply gets tired of providing her the support that she "EXPECTS"? And in denying that as a possibility, she is telling everyone that what I write is "a shadow of doom"? It really isn't. It's real life. It can happen and it does happen. After all, he probably has another 30 years or so to go in order to catch up with where we are. I'd be very very tired of it at that point, wouldn't you?

9. The majority of today’s health care is capitated. Google it if you don’t understand it. If you have an on-going medical condition, you will be lucky to get the basic care that you need. You aren’t going to get mental health visits or therapy at all. Most likely, any mental health professional in your medical facility will be a generalist. They just don’t specialize in diabetes management. It would be wonderful to have something like that available, but we are not there yet. I am an artist. A well-known artist as I’ve had over 100 pieces of my work published in magazines and books. So I probably understand how important art therapy is to anyone, diabetic, spouse or otherwise. It is my personal therapy. But art is not something that every person out there understands...or wants to try. If you have read my blog from the beginning, you will know that I have exhausted (used up) all of the therapy available at my medical facility. I have a wonderful diabetes nurse who continues to work with me. And every single therapist I have seen have all agreed with me - the choice is always - stay or leave. And yes, we have been to couples counseling with a diabetic specialist. Once again, the writer read a few blogs and made her judgment calls. Unprofessional at best.

10. Name calling and making accusations about another person, especially someone that you do not know, is a cowards way out. She should simply take the “high” road and realize that I merely offer a different viewpoint. She doesn’t have to agree with it, but probably, as a professional, should acknowledge that my life does exist as I write it. I find it very interesting that my friends do not call me toxic or think bad of me at all. And I have numerous comments from others who seem to have a similar life, living with their diabetic spouses. It seems that the only people who have a problem with what I write are the people who have diabetes themselves. That should be a wake up call of some type. I write very realistically. I write what happens and my feelings about what happens. I write about life. And just because it makes you angry to read about it - certainly doesn't mean it's wrong for me to write about it!

Conclusion -

If you see hints of yourself in what I write, then do something about yourself. Don’t blame me because I write about it! If you are afraid that what I am writing might be true, and might happen to you or your spouse in the future, then do something about it now. Don’t blame me! And don’t claim that you don’t play the “blame” game when you blame me for writing something that is so honest and accurate about life with a diabetic that it upsets you! There’s nothing toxic about this at all – it’s life! And you need to keep reading what I write in order to prevent it from happening to you and your own spouse!

DW

PS George, ArabKathy, please make sure you send this one too!! ;o)