Friday, January 15, 2010


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
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!


Thursday, January 14, 2010

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!!!


Wednesday, January 13, 2010

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.


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) "get it out of your system". Does not matter that others might not agree, might not see it your 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".


Tuesday, January 12, 2010

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 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, just a way to get around addressing the real problems that are out there!


Monday, January 11, 2010


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?

Sunday, January 10, 2010

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 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!


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