Thanks, it helps..

Family can be difficult and so is this time of year (for me)
the short days are too dark --
I recognize that this week is one I should be enjoying
traffic is easy
I really don't have to work very hard -- I can leave early
not very many people at the office interrupting my work
tom is in a good mood and is being very nice
but it takes me until January until I start feeling better
its mental -- I know
but I need to know the days are getting longer
that on the calendar, spring is coming
December has been so cold!!!
the next couple of weeks are supposed to be warmer
I'm trying -- but have to admit that I am quite down
I appreciate the support from my sisters who also have diabetic husbands
for some reason knowing others have the same issues to face helps
thinking that maybe I can help a little is also comforting

so, to my fellow wives -- thank you
I'm glad you are there
it helps
and, as always, I hope we all get a good night's sleep
because at the end of it all
with good sleep, we can deal with the rest

Tom's Wife

Yay! XMas is over!

I know that some people like the holidays
but for me they are always so stressful that I can't wait for them to be over
I am now home and grateful to be so
My beautiful, quiet, home -- the one that is mine!

Selfish? yes; Honest? Absolutely.
And for those of you who are still afraid of being honest
here on my blog?
sometimes its REALLY hard, but its important to give yourself permission

My Tom doesn't have the physical problems that DW's husband has
so while I can empathize, I'm not there

but talk to me about the issues faced by Crazy Wife and the lies like that?
I'm so there
Its taken me so long,,,, but finally, I can recognize -- it is NOT ME!
Its him!!!!!!

that doesn't stop it from hurting
or stop me from questioning myself sometimes

Its not fair, its not right, but he does it any way

We were at the hotel on Christmas Eve and he woke up really low
he was ranting - honestly, I have no idea what he was talking about
he was yelling at me about something
of course I was wrong, stupid, whatever....
somewhere, I found patience
I gave him some soda and took a shower
when I got out he was eating some candy
then he was really sorry

My Tom goes low, he gets upset when he eats too many carbs
he will scold me for feeding him too many carbs at dinner
but his mother, of course, can do no harm
even when she gives him stupid stuff
he won't tell her no -- he won't tell her that she is wrong
he eats and takes whatever she gives him
not me -- but her
he doesn't want to hurt her feelings
obviously he doesn't care that much about mine

one of her specialties is a particular cookie that she makes
according to her, Tom loves these cookies more than life itself
they are made with butter, sugar and flour
she pushes them on him non stop
including sending some home with him
he won't tell her no
he says ok then the minute we are out of her house, he tells me he won't eat them

it doesn't matter that he has told her that he doesn't eat them because of the high carb count
"but you love these and you can eat them"
then when he is not around, she lectures me on what he eats and how his health is -- what I'm doing wrong in not taking care of him -- this year, it was that he is too skinny and not eating enough

Arghh!

You know, DH writes in such an organized fashion and
I just write stream of conscious
oh well, that's who I am

deal with it
I hope all of us get some easier nights (and days) as we go into the next year
or at least the strength to deal with the ones we have

take care.
Tom's Wife

Didn't Realize how much time has gone by

thank you, DW, time really just flies
I've been checking in and reading your posts
but didn't recognize that I haven't written in so long

to be honest, this is not my best time of year
too much stress

you know that my job is very difficult
there is hope on the horizon, but in the meantime,
well my new mantra is "I work for a lunatic"
maybe if I say that every time he says something that makes me angry
then maybe I can get by for another day of his insensitive horrible behavior

in the meantime, my dad's health is ok
and Tom has actually been doing ok and being fairly nice to me

I am dreading the annual visit to my in-laws for XMas
Tom only wants to stay 3 days so at least it won't last long
but it is always so difficult
I totally recognize that this may be my feelings about them
but I just totally dislike my mother in law and frankly I believe she dislikes me
there is so much history -- even when I go in with a good attitude it only takes about 4 seconds before I want to scream

Now we have two of our nephews who are ex-cons
a niece who has an equally messed up life
and a drug-addicted brother (of Tom)

It is so miserable -- with everyone pretending to be happy and enjoying each other ignoring the white elephants in the room.

I know its only a couple of days a year
but they don't let me be me
I try to stay to myself, take the dog for walks, and stay out of conversations
but it doesn't work
someone will follow me out the door
or into one of the bedrooms (where I have gone to read)
If I don't participate in a conversation someone will ask what's wrong or am I angry or whatever,
I really can't win

OK, I'll stop, I'm getting agitated just writing about it
I am not going to think about it until I'm there

My heart is with you guys as you support your guys
I hope you are taking care of yourselves also

honestly, I've been trying to do that lately
don't think I've been doing such a good job of it
but I'll get by

take care
Tom's Wife

Welcome Crazy Wife

We have another blogger who has joined our ranks and I would like to welcome her with open arms.

"Crazy Wife" is now one of our followers -- I encourage you to follow her also.
http://crazylifewithdiabetes.blogspot.com/

Personally I would like to offer as much support as I can
No, you are not crazy,
yes, you loved the man you married
often that is not the man you see in front of you
some days will be fabulous
other days will be horrible
there are no "rights" or "wrongs"
just days

If I have helped at all, I am glad, and that encourages me to go on
I started my blog in part due to the fact that there really is no public support for our position -- the organizations set up to help the diabetics refuse to recognize our plight -- they believe we are wrong to complain

take my word for this -- I have been down that path many times and it makes me very angry

When I found the blog Diabetic Wife, I felt like I had found the first person on the planet who understood me. If I could figure out how to expand this to a lot more people I would.

But as we know, it has to start one step at a time.

OK, off my soapbox, on with my day.

Take Care, "Crazy Wife", we are supporting you.

good luck.

Tom's Wife.

October 2010

Its mid October and life continues in its "normal" ups and downs
Tom says he is fine but has had quite a few lows in the past several weeks
Always right before dinner

On my part, I've been angry with him
No one big thing -- just lots of little things that build up over time
so when he says mean things and refuses to take care of himself
well, I just feel like breaking

Honestly I have felt so lonely lately
My dad's illness has taken him away from me
his cancer is in remission and he says he wants to talk like we used to
but he just isn't up to it anymore
he is always tired, and at 85, he just doesn't feel good most of the time
I've realized that my dad has been my life anchor and
even though he is still in my life, the anchor is floating in the water
no longer dug into the deep sand under the water
mooring me to the ground

And now that he isn't there, I recognize that Tom doesn't provide the same source of support
Its different and at almost 55 years old, I should get it
I should know that he is not my father, he is my husband
he is a different type of anchor -- and there are moments when I really do know that
but then he acts like a human being and does things that hurt my feelings
not intentionally, but hurtful nonetheless

I used to have walls up to protect myself from the hurt
but that led to other problems
like a 100-pound weight gain
now that I have lost 70 of those 100 pounds
I feel the hurt more
At least this is how I explain it to myself

there are days that are really challenging
and others, not so much

His diabetes adds a layer of complication that only other wives can understand
and I speak of wives in this case, because I really am talking about the general behavior differences between men and women
Its just different -- not better or worse -- just different

so that is my musing for today
I hope that when you read this you will take a moment for yourself
and just take a deep breath
take one minute for yourself and let us all
try to figure out how to be our own anchors
because at the end of the day,
who else can we really depend on?

when you have the chance, rest well.
Tom's Wife

Who to trust...... Not the medical Industry.....

It appears that Neil's wife provided these comments:

We as a family have researched the behavioral issue regarding diabetes. Of course it varies from obesity caused by oevereating to too little insulin. The. We have seen behavioral issues with obesity and that is not limited to diabetes. But in the case of diabetes a lot of factors can come into play. If it is truly lack of insulin and not obesity, then once the diabetic has adequate insulin and monitors the bloood sugar to keep the blood sugar normal the behavioral issues will go away and the sense of joy will return to his or her life. Too little insulin can alos lead to depression, but insulin can pop the diabetic right ouot of depression. You will not see this immediately but given six months great changes will take place. Too little insulin will have an impact on the frontal lobe that helps control things like anger.

One day Neil decided what the doctors had been telling him represented nothing but hogwash. He spent four years studying every day about diabetes from a pure scientific standpoint as oppposed what makes the drug company, the hospitals and the doctors the most profitable. Neil discovered that only a very small percentage are like him where virtually no insulin is made. neil has been a diabetic for 40 years and tells every diabetic that lots of exercise and a good nutritional diet will go a long way toward improving the diabetic condition, which in turns brings greater happiness. When he sees someone that is diabetic and weights 100 pouhnds too much he just shakes his head in despair. Neil did not run into trouble because he ate too much or did not monitor his blood sugar and take insulin properly, he ran into trouble by allowuing a doctor to give him an injhected drug. He passed out in 15 seconds. He then went on a tail spin ride that ended up nearly destroying his kidneys because of the drug, he had dementia symptoms and serious ones for several weeks, and his his heart was in major trouble. Anyone who really knew him pretty mch agreed the drug must have caused some brain damage too. He went completely blind for quite some time, and now is left with very blurry vision. How is sopposed to do custer servoce work if he can not read the computer screen. His vision can seem to improve then can switch back to a blur within an hour or less. He can go to bed seeing clearer and then wake up to a complete blur. We have found studies of children who have had brain damage due to an accident or disease, and they experience the same thing. We believe the drug caused brain damage. On the other hand, we are seeing a steady improvement with many set backs. We hope for his full recovery. He jokes the doctors did this on purpose to shut him up because he is so critical about the care of diabetics. His Niece died from diabetes and so did his mother. Those two deaths lit his fire, and he believes too little is done for diabetics. In many cases, diet, exercise and the forgotten element counseling should all be part of diabetic treatment. I hope you enjoyed these comments.

Thank you, Neil's Wife. No one is more suspicious of the Medical Industry than I am. What happened to Neil is horrible and goes to show how we -- as spouses -- cannot ever let up our vigilance if we want to keep our diabetics alive.

I'll provide my little story -- not nearly so dramatic -- but also a lesson about not trusting "medical professionals" Tom went to the hospital for shoulder surgery. This was quite awhile ago and he was very healthy and had really prepared for the surgery in terms of making sure that his diabetes was in control before the surgery. (good for him!)

But after the surgery, he was in a great deal of pain and they were giving him morphine (of course). The surgeon wanted to send him home because this was supposed to be out-patient surgery; but his endo-doc had requested it be overnight because of the diabetes. So they had put him in a room somewhere while they decided and hooked him up to an I.V. I asked what the IV was and the nurse said glucose.

WHAT!!!!!!!! I asked if they had tested his glucose since he had diabetes and she looked at me as if I was speaking in a foreign language that she didn't understand. She looked at the chart and said "Oh, I have to go ask the doctor" and left the room.

they had to get a "tech" to come in and test his sugar! who said it was around 500 but that was normal after surgery. I demanded that they take him off the glucose and the nurse said she would have to ask the surgeon. The surgeon had left the hospital by this time.

Needless to say, I was very upset by this time. I called his endo-doc and asked him to intervene. He called and got things worked out. Got Tom off of glucose, onto Saline, got him checked in for overnight and everything else. At around 11 that nite, they insisted that I leave. I have to tell you that I didn't want to go -- I was certain he would die in that hospital where nurses didn't even know what diabetes was. But I left, he was ok, and we learned a lot.

But it is a warning - as if you needed another one -- that you need to take control. You can't trust, you know what's going on. You live it every day - they don't.

Good Luck,
Tom's Wife

Read the Comments

Neil - I know I speak for many of us on this site who feel horrible for you and your plight
It is what we work so hard to prevent with our spouses
If I knew how to help, I would -- unfortunately, I don't
Maybe someone else has an idea


As for those of us struggling to be the partner -- well, that's what we are here to talk about
We all work so hard every day -- at so many things
We need each other

so today, I am here to say thank you to my fellow "wife"s
carry on and sleep well

Tom's Wife

Second Try - Help from Sources

Don't know my computer shot that little note out without waiting for the rest??...

While it is often the little things that add up to create a big ball of anger in me, it is also the little things of niceness that build up to a create one small nice thing to just melt it away. Last week, All of Tom's little things were perceived as mean and selfish and hurtful. The final straw(s) was another little thing - but it hurt nonetheless.

But I think the nice stuff - from a friend (just like DW says) -- was probably just as small - but also built on a bunch of other small things.

"Just Little Me" suggest a CGE device (I think that's what she calls it) she is probably describing a monitoring device that looks like another cell phone attached to his belt and, using radio signals to a chip placed under the skin in his arm, monitors the sugar in his skin in regular intervals over the course of the day.

Tom has had one and in concept it is a wonderful idea. Until now insurance has been very good at paying for them all, but they are very expensive and Tom has had 3 or 4 in six months and they have all broken. He is currently 3 months into waiting 6 months for his next device. (he is back to the finger stick method.. The science is not quite there. and we worry that at any moment the insurance company is going to tire of paying the bills - and then what?

That's my wrap up for this morning. hopefully this will be a better week for one and all.
Tom's Wife

Help From Different Sources

Thanks to kind words from a lot of places this Saturday is much better than last.

I am humble

Diabetes Wife wrote to me:

At least once a week, I ask myself why I stay. Today was that day. We stay because we love the man we knew when we married. We know it's the diabetes that has changed them. We know it's not who they really are. Yet, when the time comes to leave, each one of us will know. We have to do what is best for us. And there should be no remorse. No one should have to endure the verbal and sometimes physical abuse that happens when a diabetic goes low. No one.

My response: Thank you. I have been miserable all weekend. Tom finally realized I was serious and really listened to me last night. Of course, he says that things will change. but we know that's only until the next time he goes low. Its so exhausting -- but what's the alternative? I really just want to take the path of least resistance right now. Work is SO HARD right now I just can't take on any more "work"

I wish I could get a full night of sleep
maybe then I would feel better?

I hope you get sleep
Tom's Wife

I'm Tired Too

After reading DW's post from Friday night, I'm with her
Suddenly, I'm really considering the idea of leaving
at the end of the day, its the mean-ness -- the selfishness
Over the last month there has been a definite increase in his mean treatment to me
it is probably not obvious to the casual observer
and if I were to list any one item, you would say - no big deal
you need a tougher skin

but why do I need to have a tougher skin at home
isn't that the place where I can be and just feel loved?
just feel safe?
why should I have to be home and worry about saying the wrong thing at the risk of being made fun of?

And as I said the other day, there is always the question as to whether it is diabetes-induced or just personality-induced

Also, as DW said, when they call you a liar -- because they just can never be wrong -- the pain builds up to a point where it is sometimes just too much to bear

I'm sitting across the room from Tom today and I can tell, he "doesn't know what is wrong" Why am I so angry today?

But I don't know if its "anger" as much as it is defeat
was this a personality "deficiency" he had before I met him and I missed it?
has his diabetes taken over so much of his life that I'm just an appendage?
I'm just there to help him survive?

I went on-line and looked at apartment rentals in the area today
clearly the money would be harder than it is today
but I could do it
I'm sure I would have times of loneliness - but not sure it would be worse than today

do you ever wonder whether the emotional toll on us -- which doesn't get measured -- is so different than the physical toll on them -- which does get measured. At least someone tries to treat theirs....

Its only 1 pm and I feel defeated for the day already.

Hard to stay angry at a diabetic husband

why is it so hard to stay angry - even when he does such @#$% stuff?
I guess we always wonder if its the diabetes causing the bad behavior?

I don't even know if the specific incident even matters any more
but Tom did such an inconsiderate thing last night
and he hurt my feelings - BIG TIME!!!
He came in - all big eyed -- what? what's wrong? why are you upset?
Really? Are you stupid? Clueless?

So I spelled it out.. word for word...
then I get the hang-dog look, he is sad, he is sorry
yada yada yada

But this is no different then we have had before
how can he be this dense?

Truly, he seems more concerned about our dog than me
really, I'm not kidding

And yet, here am I today, making him dinner and talking with him as if nothing happened. he was acting as if his sugar was low -- what am i supposed to do?

Arghhh!

I'm just frustrated tonight
why does he get to be mean but I have to take care of him?

ok, I'm going to bed.

Talking it Out

I had a conversation with a new "friend" today
In telling her about my significant weight loss, I realized that I figured out how to "talk" my stress instead of "eating" my stress

Not sure if I told you this before, but over about a year I lost 70 lbs
in fact, I didn't plan it
it kind of just happened

but a bunch of stuff (bad stuff) happened
and for one of the first times in my life, I couldn't eat
but what I did do, is start talking, in a different way, to people that matter
when I was feeling defeated and cornered, instead of hiding away and eating
I selected a few people who may be impacted in a manner similar to me
and shared some of what I was feeling

Amazingly, they understood -- they were able to empathize with me
even if they didn't have the exact same experience as I had
they "got it" -- they understood -- they helped me see the humor
they helped me see another way through -- I didn't have to hide and eat to feel better -- which of course never worked!

You know, of course, that these people who understood - they were women
Maybe, because I am a women, and we talk
but it worked for me
I just have to stick to it
I fear I won't be able to - but its my hope that I can

Why is it that talking can be so difficult?
it is so hard to trust, it is so hard to believe that someone else believes in the sames things as us when those "in power" tell us we are wrong, we are "stupid", etc

On the living with a diabetic side, we are led to believe that we make up our husband's diabetic "incidents"

He wasn't low, that was our imagination
he wasn't high, that was our making things worse than they really are
we make these things up so we can add drama to our lives
or something

but when we talk, when we share
we realize we are not the ones who are wrong
we are not the ones who are crazy
we are struggling to get through the day

Why in the world would I want Tom to be low in glucose?
why would I ask him to eat something to increase his sugar?
Do I do get some diabolic pleasure from this?
Oh, I know, I really want him to die, yes in another 30 years!
and in the meantime, I want to panic every time he has a dramatic swing!
This really makes no sense -- what is he thinking?

But sharing, talking, knowing that others understand, really does help
And, I don't mean talking indiscriminately
it matters what you say and who to share things with

but I am here to tell you, it finally has helped me

have a good night
Tom's Wife

Is this a happy ending?

A young man I know just completed his divorce from a type 2 diabetic woman.
They have 2 kids.
She (they) are in their young thirties and she had zero control over her diabetes
She had a horrible diet, never exercised, and from what I heard would let her glucose swing wildly high and wildly low -- wouldn't take any medication
By the way, she works in the medical field also
On more than one occasion, she was driving and her son called daddy because he was scared that mommy was falling asleep while driving!

Well, my young friend told me that he didn't know what to do, he was worried about the kids, that he was tired of dealing with her illness, but -- you know the line -- do you leave someone because they are ill?

Guess what? She left him and the kids! She walked out!

Of course there is more to the story and we will never know the entire truth, but at the end of the day, he got custody of the kids and she is off "killing herself" and the kids are safe with my friend.

I don't know if this is really a happy ending or not, I believe it is for the best. My friend is a terrific person and his kids will have a safer more secure home life now. But they have also lost their mom. Gosh, this is just a no-win situation isn't it?

It really makes me sad,
I mean, of all people, I know how diabetes can have such a devastating impact on the person who is ill and on the family "married" to the disease. It is HARD!!!!

But lots of people face it and deal with it. Maybe not all the time, but they realize that there are other people involved and take care of themselves so that they can take care of others. And then there are those who are not capable of reaching that place -- at least not enough of the time.

I know for me, leaving has been an on again/off again "fantasy" -- not sure that's the right word but I'll use it anyway. There are times when I just don't think I can take one more minute of him! And, with this type of disease, it is SO DIFFICULT to determine what is disease related and what is just personality related. Is he having trouble reading/putting sentences together/remembering stuff he used to remember because he is older? not paying attention? has high sugar? has low sugar? is angry with me? wants some quiet time? is not in the mood to talk?

And yet, truly, the good times far outweigh the bad times for me still. If it weren't for him, I would probably laugh much less often. So I am staying put. At least for now. But, that's my decision. Everyone else has a different path to follow. And the path continues for a long time. There really are no right or wrong choices - there are just choices.

These are my thoughts for today.

As always, I wish every other diabetic's spouse, a good night's sleep tonight.
Tom's Wife

Labor Day 2010

This Labor Day I am grateful for so much in my life
At the same time my heart breaks for others who are not as fortunate as I
Yet, there are the day to day challenges of life -- especially life with a diabetic -- that just depletes me - even if I don't want it to be that way!
Worst of all, when I compare my "troubles" to others, mine pale -- my life is "easy"
I should stop "whining" -- I have so much --

My diabetic husband shows all of the same signs as the others
He yells at me, he talks crazy, he starts flailing around at 2 in the morning, waking me up so I can get him some sugar then making it almost impossible to get him to take it!
But he tries to eat well and he tests often and tries to keep his glucose low
But its such an awful disease!
How is a person supposed to do what a body (pancreas) does automatically?
Some days are just too much! right?

Then there is my job.
I love the fact that I have come so far in my career -- I never dreamed I would do so well
just taking one step after the other
I really remember the days of counting every single penny coming in the door
wondering how I would pay for peanut butter to get me through the next week
20 years later, it still amazes me that I don't have to do that anymore
but don't misunderstand
we still live as if we do
we squirrel away what some would consider "a lot of money" from each paycheck
because (1) we are both afraid that the money will stop some day and (2) we are both worried that some day Tom's medical bills will be enormous and we will not have the money to pay for them. Neither of us wants to think of him being in need of special care and not being able to pay for it. We both know that I am not a nurse -- especially when I read about the care that other women give to their husbands. I just KNOW that I couldn't do that!

Maybe its why I never had kids, maybe its because I'm too selfish. Tom says its just because I'm realistic and understand my priorities in life and he supports my focus on my career, rather than him or kids. That's how he sees it. When I'm in a good place, I can see that; when I'm in a sad place, its another story. then all I see is how lacking I am. How I am not a good person. That I am selfish and just care about taking care of myself.

Today I am having one of those days. I am feeling like everyone else has a more difficult life than me and it is not nice of me to complain.

I'm not much of a person who hugs others; but if ever a person needed a hug, its our friend Wife of a Diabetic. What she writes on her blog just tears me up. I can imagine what it must be like to be in her shoes. In my case, Tom has only offered me glimpses of what she has to bear on an hourly-daily basis.

Someone else wrote what I think so many of us think: How can I leave a man who is "just sick" After all, its not his "fault" Yeah, but its not our fault either, and we had no idea what we were getting when we got married.

then again, women marry men who do other things that they didn't expect.
I once knew a women whose husband had an addiction to on-line porn.
She didn't learn about it until her 5-year old son caught him
hubby wouldn't/couldn't give it up
they got divorced

Is that different? Should it be different? Yes, we can evaluate... but in both cases, the woman's life and that of her children were turned upside down

None of us is perfect
neither are the men we marry

I think of Labor Day and how much time is spent working
working at something we get paid to do
and working at so much more than money can pay for
that is the life of a diabetic's wife
and at the end of the day
what is it that we would really choose to do?

I have no answers, not today, today is just too hard.....

Been Away

Just looked at the last time I posted and realize that its been a long time since I've written
Its been a busy summer
Mostly work -- but really just a busy life

First things first.
Tom is on a pump and a monitor
the monitor failed -- again
this is his, I don't know, the 4th one he has received?
and it has also failed
yeah, I get it, its new technology
but a new one won't be available until sometime late December
so he has finally, sort of become accustomed to it and now he is back to testing many times a day
he is not happy about it and doesn't do it

I think he considers the pump less of a benefit than he considered the monitor
he just hates the testing
can't say I blame him -- but the problems with the monitor are big also

From my perspective, the lack of the monitor has had multiple impacts on my life
good & bad

on the good side, the beeps and buzzes have stopped at all times in the middle of the night
on the bad side, his highs and lows have become more pronounced
of course, with Tom, the lows are so much more noticeable

it doesn't matter if its before dinner or the middle of the night
a severe low can be 30 with Tom
he talks nonsense, he yells at me, he refuses to eat, you know the routine

we got a new dog -- there are challenges with her
the rescue didn't tell us the truth -- as in she really wasn't spayed and she is much older than they said -- but Tom loves her and loves walking her a lot
as in, he walks her three times from the time he gets home from work until he goes to sleep

don't get me wrong, I think that's great
except that he is getting more exercise and not taking this into account when considering his glucose count

then guess what happens some time during the night? He goes low -- are we shocked?
not me

but he refuses to agree that there is a problem
its me, I make this up, I am just "picking" on him

here is my question, why would I do this?
can someone please tell me why I would create a story that he goes low in the middle of the night and yells at me?
what is it that I get out this?

I just don't get it?

So, now, I'll go away, again.
I will tell you that I'll try to keep up better
but who knows
life sometimes get in the way

and some days, Tom is not the total center of my universe
my work really does fulfill me and keep me occupied

that's a good thing -- for both of us

so for everyone out there
especially those of you married to diabetics
I wish you a good night's sleep
because that really helps all of us cope better every day

Another Wife

Today I received a response from yet another DW -- Welcome (I think!)
Here is what she said -- go to her post if you are reading this and give her support also!

You and DW have been a God send in a really trying time. You showed me that I am allowed to feel how I feel. I am that young newly wed that really didn't know what it would be like to live with diabetes. You have inspired me to write my own blog about living with a compliant diabetic. It is still hard and there are still issues. If you would like to check it out it is arpadilla.wordpress.com. The only difference is my husband knows about mine and has the link. The first time he read it he cried. He gets to see both the good and the bad that I go through with him. Thank You!

I am glad that we can help -- you know its really a shame that the "major" diabetes organizations refuse to recognize us and don't want to help us
believe me I have tried -- I have called, I have written, I have emailed, you name it
they don't want to hear about what a hard time we have had

If you are a mom and have a diabetic kid, everyone can feel sorry for you
Clearly its your job to take care of your kid
when its your husband its so much more complicated, right?

You are supposed to take care of him -- my gosh if someone is sick, you help, right?
but you are not supposed to be his mom either!

This is not the 1950's!

And I was raised in the 1960's, talk about a confusing time!


And to end this, I wish you (and all the other DW's) the best of luck
I hope he and you can always talk to each other
You will probably always go through good times and bad
but if you can share, then in the end you will be able to survive
Life is hard for everyone -- we just have different burdens
Ours is diabetic husbands (and sometimes other junk)
but we carry on

As always, I wish everyone a good night of sleep
because with plenty of rest, we can handle almost anything
after all we are women!!!

tom's wife

Ahh, the beach

I love being on vacation
the plane lands, we arrive at the hotel, and I am transported
there is nothing better

Oops!
We can't take a vacation from our health
Tom picked up a bug - has been sick (stomach) all day
He is good about it -- I was at the pool all day
he didn't even tell me until I got back to the room at 5
he wants to be left alone to sleep it off
don't blame him
but he is not good about keeping hydrated

So I'm doing my best not to worry
but you know, you can never really turn it off
I'll go downstairs in awhile and have a small dinner
that doesn't bother me at all
I will pick up some saltines, some almonds, some soda
we already have water in the room
just so if he can, he can have something if/when he is able to

Its always something, yes?

Girls and Books and Dads

Being with the girls is great therapy
they understand

then again, books are such a terrific escape
I went to the bookstore to stock up
in preparation for the vacation

Found lots to read!
sometimes I can't find anything
other times I find a lot
today was a good day

had a big family brunch for father's day
Dad gave me an especially special hug
that was very meaningful
especially with everyone there
I really didn't have much time to talk with him
Suddenly now I'm feeling a little bad
that I haven't had time to spend just with him
but clearly he knows
I am very lucky to have such a great family
even if they overwhelm me at times

hoping for a good night of sleep
tom's wife

Priorities

You know how it is when you just have to make decisions to let things go?
I am one of those people who likes to have everything in its place
I don't go crazy about it
little bits of disorder is ok for periods of time
but then the family room just has to be cleaned up
or the stack of magazine just has to be sorted through and old ones thrown away

Yes, I hang up my clothes every night
my closet (which is large) is neat and organized
No, I don't have children and there is a reason for that

But even without children when you share a home with someone else
you have to compromise on some things
and one person's stuff could by another person's mess

Tom hates to throw anything away
I have no such problem
more often I'm sorry that I no longer have something that I threw away

We have a room that we set up as my office when we moved into this house
Tom's office is in another room
I got the silly notion that this meant that what was mine was mine and what was his was his
What was that about?

I never go into his office -- it is piled high with stuff (remember he doesn't throw things away)
No, he got to the point where he doesn't like using his office any more so he uses mine
now mine is starting to look like a mess also

It is so exhausting trying to keep it neat or trying not to be annoyed or arguing about it
I try not to get upset
but its really hard

The crazy thing is that on some things, Tom is very organized and when I have had enough and force the issue he works with me to clean it up and put everything away where it belongs

but why do I have to be the bad guy and demand it?
why can't he just do it?
I know, that's a stupid question

the thing that has me all riled up is that I went looking for something today
and of course I can't find it
on top of that, when I was moving his junk, a stack of papers fall on the floor
making a bigger mess
then a box of stuff fell on my foot -- OUCH

so I gave up
tomorrow I'll ask him if he can find what I was looking for
he will probably find it in two seconds
and he won't complain at all
because he is a nice guy like that
I'm the mean one

I really need this vacation
I made an appointment for a massage on my first day there

can't wait -- maybe I won't have to talk to almost anyone for a few days
see, I'm not so nice -- but that feels real appealing right now

happy weekend.
tom's wife

Being Tired and Moving Forward

DW is tired -- he doesn't do what he is supposed to and she has to deal with the consequences

Welcome to the life of a diabetic's wife -- I know there are exceptions to the rule
that's why they are "rules" -- right?

but certainly that explains my life

Tom has had a "cold" for the past two weeks
He has been so sick that he missed days of work -- he never does that
he even slept in the second bedroom -- he never does that either

Finally I nagged enough and he went to the doctor today
She diagnosed him with bronchitis and he believed her
Now he is on medicine - several of them
Now he is convinced that he is sick

Now I am sick
Why won't he listen to me?
what am I -- just a nag? clearly that's my purpose in his life....

In the meantime, I'm getting by
My quest for the next phase of my life goes on
Still questing, still pondering
one of these days I'll figure something out

in the meantime, next week I am taking a vacation
going to Key West for 5 days
can't wait

but still have a week to go

good night
good rest......

tom's wife

Age

I'm now 54 years old and I've been struggling for 4 years with being in my 50s
i didn't know why
today I had an epiphany
I am really struggling to figure out what's ahead
every time I try to talk about the future with Tom
he defines it in terms of money
what will it cost us to do this or that
I'm feeling scared of having the life of my parents or my parents in law
the wife taking care of the sick husband
really having no life at all
its really depressing
I'm wondering what I have to look forward to
in my brain I understand that this is not reasonable
I have control over my life
I can choose what I want my life to be

but emotionally, I just don't see anything good ahead
I see work ahead for the next 15 years
and then nothing but work of a different kind
and boredom

and then again, what do I want?
honestly, I can't even answer that question

I'm sort of jealous of DW who has discovered her art
I don't have a clue

poor pitiful me -- what a sad sack
I should be ashamed of myself because I have so much
but I have spent so much of my life focused on work
I don't know how to figure out what's next
and next feels crappy

that's it for tonight
I hope you are having a better night

tom's wife

Summer in DC

I love summer -- my favorite season
the hot weather, even some of the humidity -- its been a good weather year so far

Unfortunately, Tom got a very bad cold this year
He has not been this sick for this many days in a long time!
He stayed home from work for three days and from tennis for a week!
so unusual!
Well, he called it a cold - I think its more than that
I think he has had a fever -- and I don't think that's a cold, is it?
The good news is that he did a good job of managing his sugar this time
Frequently he doesn't eat when he is sick
but he did this time

Once again I am grateful that we are in a good place in his healthful life

As most of you know, it is not always that way
there have been times....

So true to my previous entry, I went back and posted all of the previous entries where people commented on my earlier entries

when you have some time so night, I entered comments - those of course, that I were appropriate -- and they are all posted


more to read

so, back to my summer theme -- so busy
outside a lot
going for a walk

have a good evening and sleep well

tom's wife

Comments and Chat

I spoke with my niece about my blog
well not specifically THIS ONE because I prefer to stay a little anonymous
but blogging in general

I won't bore you with the entire conversation, but the end result is that I am going to post more of your comments going forward. You see, I would write more often if it felt like I was having a conversation with friends, rather than me just blabbing about my problems to the air. If I wanted to just write for no one to see, I would go back to writing in my private journals. (actually I still do that)

On good days, I'm not sure I have anything to say -- and I certainly don't want to "show off"
and sometimes on bad days, I'm so exhausted or angry that writing is the last thing I want to do

So you guys can help.

Lynn, you have been great lately, and JustLittleMe occasionally sends really nice notes.
Those are just two people who are in similar situations and their comments will make this blog richer.

About once a month I receive an anonymous note from someone new -- I have tried to respond myself -- but now I think I should simply post those comments and let all of us try to support the new person.

Is this what a Blog is supposed to be for? I don't know. But its what I want to do now and my niece has given me permission. So help me out.

Let me know if you are sad, angry, defeated, hurt, or whatever by your diabetic husband. Or share your stories of how you have dealt with living with one. The rest of us can learn or laugh or cry with you.

I will continue to share my trials and tribulations -- because after all I started this whole thing -- but your input will make it all the richer.

thank you for the community -- hopefully we can all build a better support system out of it.

Tom's Wife

Support for Young Wifes of Diabetics

At the Memorial Day Ceremony, there was a thing about how a 20-year old woman lost her husband in the Afghanistan war -- she was devastated and it felt like no one understood. After a while it seemed like people wanted her to move on -- to get on with her life -- to "get over it"

She couldn't. She loved her husband. He had died in combat and she was devastated. She missed him every single day and she simply could not "move on" like other people wanted her to do.

Long story short, she found a woman through an on-line blog who had been through the same thing 30+ years earlier, during Viet Nam. The now-50+ "widow" understood, "advised" the young widow to work through her sorrow at her own pace, that there was no right or wrong way to miss her husband. that it was ok to miss him so badly. The two women "bonded' the older woman helped the younger, understood the pain and grief, provided support and counsel. The younger woman felt validated.

Can I be that type of role model for other women? I want to....
it certainly would have helped me at that age.
I had no idea that it was ok to be angry at my husband back then
I didn't know that it was reasonable to be upset when I realized at a very young age that I would never have "normal" sex again
No one explained to me the difference between a man who has a chronic illness like diabetes and one who has an illness that is more understood and truly can be managed

There is so much I didn't understand -- about him, about his disease and about me

I was so angry -- and I wouldn't face it -- in so many ways Tom was really good for me
He is still the right person for me in so many ways -- just as he was then

But now that I am in my 50's I understand so much more

So, if I can be a help to others,
If I can provide any guidance
or support
or encouragement
or whatever
to someone younger than me
(or older than me)
someone who lives with this disease
and yet doesn't really have first-hand control

that's what I would like to do

I say this is for wives -- that's what I know
husbands -- I support you also
but men really do look at things differently
If I can support you, terrific!!

For everyone who craves a good night's sleep
I wish you peace! and rest.

Tom's Wife

btw, thanks, Lynn for joining the club
it would be terrific if we had an entire team of dw bloggers
what a world we could build!

Memorial Day

At first I thought it really was a calm weekend, just as planned
but he fooled me, again.

I went for orange juice this morning - and the bottle was empty
Tom doesn't drink orange juice -- unless he needs sugar
I just bought that bottle on Saturday when I went shopping

Now I am thinking back over the weekend
the beeping monitor
the angry outbursts -- that I ignored and walked away from
the empty soda bottle (the sugar kind) that was in an unexpected place

Doesn't it just amaze you when you realize that you are a detective also?

True, I love reading detective novels and watching them on tv
but I didn't really think I do it!

Wrong!

Put all the clues together and there it is
he was swinging all weekend

he must have been very high when he was so mean Saturday afternoon and I walked out of the house

He told me he was low and asked me to drive to dinner that night and then again Sunday morning when we went out, he asked me to drive -- these are not normal for him

it goes on -- I won't bore you

it is also odd, because despite the few moments -- we had a very nice weekend

Living in the DC area is a wonderful thing -- we went down to the Capitol and watched the PBS concert. It was wonderful -- very emotional!

Being from the Viet Nam generation, it is an odd feeling to once again be on the National Mall during such an event. I'm certain it has to do with age and the times we currently live in -- but today I have an entirely new perspective on everything

I still detest war -- it feels wrong to send young people to kill other people
But yesterday's ceremony seemed as much about honoring the people who made it back as it was remembering the ones who didn't. That was good.

Very moving!

They fight battles in other parts of the world, we fight battles every day in our own homes,

Now I am very tired,,,

as I said, it was an emotional weekend...

Tom's Wife

Blips

Tom ran out of supplies this weekend, while we were in the middle of a huge family event

I don't understand

Nothing bad happened, but really, how does someone run out?

His monitor ran out of inserts -- I'm not saying that I totally understand all of the pieces and dynamics of that

However, the key point is that he had run out of inserts and had not ordered new ones
He was waiting for -- something to happen -- I don't know what -- and then he would order more ???

why would he wait? why not order more when he is down to one or two? its not like insurance won't let him....

I know this, because its my insurance policy and I have ordered them for him through the on-line program.

I didn't understand why he was in such a bad mood last week - being really nasty to me in the days before the party. then on Saturday morning (the party was on Saturday night) he went really low and I saved him once again. he admitted that he was having trouble with his automatic meter -- it just wasn't working right -- he was frustrated and trying to force it work

Well you and I both know that it wasn't working and that he was probably swinging high and low for days before I finally caught him in the big low

sigh, how can you help someone who makes it really difficult to figure out there is a problem

Once we identified the problem with the meter, he got back on-program, did "manual" testing and was fine. he ordered new supplies on Monday morning and will install the new insert tonight. So I know this is just one of those blips, but why would he put himself (and me) through this?

tell me, are his mood swings worse than ours?
and, we usually don't mind admitting that we have ours,
Tom is loathe to admit that he is in a bad mood much less
that he is having a bad moment relative to his sugar

Oh well, I'm glad he is back to steady
I hope everyone else will get to have a peaceful night
personally I'm getting ready to have an early night

sleep well and take care.

Tom's Wife

trying to be supportive

today I received an email from another spouse who is trying to cope
her list of experienced is similar to all of ours who have been with spouses with the disease

I am finding that being married to a Diabetic 2 is very difficult. I also have been put in the role of nurse, parent, coach, mind-reader, researcher and breadwinner sole provider. He has been unable to work due to all the bad days the past few years. Now he has neuropathy in both his feet and while he is only 47 years old it is like I am taking care of an elderly man. I have also worried about being too bossy and not caring enough but he acts like a little kid and refuses to do what needs to be done like remembering to take the meds during the day while I am at work. Or blood test and doctors visits if I am not there to take him. It is a never-ending, never-winning struggle

How can I help?
None of us can do it all, though it seems like we try
I love him, and it seems absurd to me that I would leave him because he is ill
then again, I never knew that illness involved being screamed at and treated so badly
right?

I never in my wildest dreams imagined that I would lay awake all night making sure that his heart was still beating after having gone so low that the paramedics had to stick him with so much glucose a cow would go into overdrive

there is no reason

there is no rhyme

this is just life

if you asked me a question I would try to answer it

at the moment, Tom and I are in a good place
he is doing really well with his diabetes
I am grateful every day

it hasn't always been this way
and I know that it won't always be this way

I know the day will come when it will get bad again
very bad

We haven't heard from DW in awhile and that scares me a lot
I realize that she is either very busy with her husband
or, well, worse
I wish her the best in the world
and I wish I could take care of her and of all of us

I don't know how

All any of us can do is get up each day and do our best
take care of yourself first
because if you are not well, you can't take care of anyone else

we forget this most of the time
but it is SO true!!!

be good to yourself
even if it is only for 5 minutes
close your eyes
breathe deeply
imagine you are in a safe, quiet place
shut out all the busyness of your life
and find peace -- just for those 5 minutes

you deserve it

you will be better for it

I hope you sleep well tonight
it is the best wish I can offer

write to me some more
and tell me your thoughts

it helps me too

Tom's Wife

Trying to Keep Up

Tom continues to do well - what a relief!
I just hope that it continues - May is looking to be a very tough month
We both are having significant job stress
On top of that four of the five weekends are filled with family
(a little too much for us)
So we have made it through two of those weekends
next weekend we have "off" -- we think
then the following two weekends will be family packed

I am hoping that Tom handles the stress better than I do
when I don't do well, I just don't sleep well
when he doesn't do well, his glucose goes low
(probably high also) but I see the lows

We haven't heard from DW in awhile and that's a little concerning
JustLittleMe posted to her blog recently
She and several other wives get together occasionally to share
How terrific!

We are having a wonderful spring where I live
I just love this weather
Hot one day, cooler the next
its been hotter than most springs
but that's ok
it makes me happy
the days are longer so when I leave work its still light outside
great time of year

For all of you spouses out there that are not having a good spring
because your spouse is struggling with his/her glucose
keep the faith, there will be better days
And, even if you only get a minute today when you can be alone
then try to take a minute and close your eyes and take a deep breath
think of a good time you had with your spouse and just remember -- just for that minute

then open your eyes and get back to your responsibilities
know that there are others in your court.
we know what you are going through
we are there with you

Tom's Wife

Peace and Thanks

I've been away from this space for a few weeks
Work has been crazy busy and just plain crazy
Sometimes its just too much
But that's a place I allow it to be

I understand that I am a caretaker
for my husband, for my family and friends, and for my work
so when something isn't right, I try to fix it
even the "un-fixable"
even when its "not my job"
I try to dream "the impossible dream"
and them I get really tired
or really cranky or really angry

why don't people do what's obviously the right thing to do?
but really, all along its me

The same is really true with Tom
its really not my job to fix him
at the moment he seems to be managing his diabetes well
I call it being at peace with the disease
I haven't noticed any major swings

his moods seem to be stable, no obvious serious lows
(his highs are less obvious)
and we are getting along very well

My heart is breaking for Wife of A Diabetic
She is continuing to go through so much
for anyone who has not gone through this particular event
its hard to imagine

just like its hard to imagine what it must be like to live through a tornado or earthquake until you have done it

many of us probably have terrible sympathy for the people living in Haiti or the middle East where they live through day after day of never ending trials and tribulations that we can't imagine

Living with a diabetic going through a bad time is sort of like that

there is no end in sight
He (or she) just can't seem to get back in rhythm
you are the one who simply must take control
otherwise -- he dies!
It really does come down to that!

So you watch and you wait and you don't sleep
and you count and you write and you measure
and you feed and you argue and on and on and on

and you share with others
and that helps a little
but then you feel bad for "complaining"
because geez, in the end its not really helping
and they didn't sign up for this either

the cycle is endless

And you just want peace and quiet

Thank you Tom for giving me peace right now
I appreciate it more than you know

I recognize that it won't always be this way
but I'm grateful for today
and just want to say thank you

(No, he is not reading this. but putting it here helps me prepare to say it to him when I see him later)

Also a quick thank you to those who have sent me notes recently
Yes, I'm here and doing well.

Take care and sleep well tonight

Tom's wife

do not read wikipedia!

here is something I know about Wikipedia
my 18-year old nephew thought it was very funny to go on Wikipedia
and change the information on one of the entries

it was a couple of years ago and I can't remember the details
but we were at a family dinner and my sister was bragging about the "funny" exploits of her "smart" son

but it wasn't funny
people rely on the information on that site
Its not right

DW, maybe you have never had to deal with the lows before
it really is exhausting
I remember the nights of watching and waiting for Tom to stop breathing
for him to not keep going lower
oh, wait, I still have those nights!

Tom keeps his glucose so close to the line that he still has those times
he does it on purpose though!

it sounds like your hubby hasn't figured out how to get his humulog in control
that happens - Tom has gone through times where he just can't things in line
but its his choice to try to keep it close to the line
he thinks he is in control
he thinks he can keep adding insulin and adding sugar back and forth until it balances out
he thinks he is in control
but I'm the one who has to fix things when he messes up
I'm the one who has to call the paramedics when I can't fix it for him
I'm the one who has to deal

and yes IT IS SO EXHAUSTING!
at this moment in time, Tom is in control
but I know it is just a matter of time till that changes again
I have no concept of how many nights of sleep I lost for this

DW - hang in there - you will get through this
don't over think it
don't over research it
he will figure it out
he has to
its his life
and he doesn't want to lose it
really

he depends on you because he can!

toms wife

Nutritionist? Really?

So, on DW's post today she described a visit to the Nutritionist. What type of diabetic's nutritionist suggests loading up on carbs? That's crazy! he is taking lots of humalog and he is very low and all she can say is carb-load!

what a load of @#*%!!

Was this person trained in the 1950's!

That is so wrong!

Why is it that we, as the partner, have to be the voice of reason?

Why can't hubby figure it out for himself?

Where is the logic, where is the reason?

Why is she charting and graphing?

I haven't done that - until now I have said I wouldn't

but who knows what I'll do in the future?

life doesn't always give us obvious choices

I can be compassionate about the exhaustion relative to the caregiver
I've been there
sometimes once the lows start its really hard to get back into the right place

With Tom he would start hitting these lows then he would
see saw back and forth and it would take weeks until he could get it back into control

its really lousy

good luck!

tom's wife

Coasting

Tom's in a good place with his diabetes right now which allows me to not focus on it
the good news is that I can go days with barely a thought on the topic
the bad news is that I know in my heart that when he "crashes" it will be a biggie

But all I can do is set that aside and deal with it when it comes
nothing in the world I can do in the meantime

like so many others I read the trials and tribulations of DW and
"live" with her
knowing someday I will be her

I have had days like hers in the past
and I will have days like hers in the future

I can't tell if she has had days of repeated lows before
because her hubby seems to have run high most of the time she reported in the past

now she reports on these lows
and WoW! do I know about the lows

how many nights I said to myself
if you are going to do that to yourself
well maybe I will just let you go into a coma and die
I just can't save your life one more time
Is that really my purpose in life?
Do I really want to do that just so I can do that again tomorrow?

And then he wakes up the next day with no memory of the event
doesn't appreciate my night of no sleep
and gets angry when I call the paramedics for help
because its just too hard for me

maybe not "hard" on a physical level -- maybe I could really force some juice into him
but on an emotional level -- I just can't do this alone for one more minute!

people who haven't been through it just don't get it
its not that you really want him to die
its just that who am I to have so much power over life and death?
why me? why now?
why, when I am so tired, and so overwhelmed, and so angry. and so everything?
it is too much.

of course I love him and can't imagine life without him
but that was before THIS
that was the HIM before this stuff started
that was the HIM who participated in our life together
not the him where I have to take care of just saving his life

It is exhausting, it is unfair, and it is often just too much for one person
and it is not something that really can be shared

we can "talk" about it
we can let others know about it
but at the end of the day when we close our eyes to try to get a few hours of sleep at night
when we look in the mirror
we know
that its just me and my husband
no one else is there
no one else understands
no one else is there to read the signs
no one else can do for him what I do
he won't let them
he has a hard enough time letting me do it
and why do I continue to do it?

Some days I just don't know
Probably because I don't know how NOT to do it

Best

Toms Wife