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