Friday, April 01, 2011

So tired.

We went to nephrology today. Another young, idiot doctor. He said, yes, hubby is anemic, but his numbers are going in the right direction, so he did not want to do anything.

He wants hubby to stop the atenolol.

Heart doc told us to NEVER stop the atenolol....not for any reason. I told the nephrologist that we would defer to the cardiologist.

I will also ask her about his anemia. Seriously...lack of oxygen getting to the brain and this idiot doesn't want to do anything?

Worthless human being if you ask me. Yes, I'm mad!!

He told hubby to start taking vitamin d again. Hubby's personal physician told him to stop taking it.

Can no one look at the whole???

So hubby is horribly depressed tonight. On top of getting no help with his anemia and sleeping 4-8 hours during the day plus at night...

His boss took some of his employees and reassigned them to other groups today while hubby was out on sick leave. The staff started calling him thinking it was an April fools joke and he had to tell them that he didn't think it was...but his boss didn't want to talk to him until Monday.

So I have a guy who is beyond depressed tonight...moping around, telling me how worthless he is and I do not have the physical energy to be his cheerleader.

I wonder if you can wish yourself to death. If you can, I think he is there.

He has almost quit eating. He doesn't want anything. He has no appetite. Losing weight right now is taking him in the wrong direction. He is already suffering from muscle loss.

Not been a good day at all. Days like this just exaust me.

Wednesday, March 30, 2011

Lilly - some days I'm just "bad"! LOL!!!

Lilly wrote

Wow. Sorry, but I have to question your husband's Type 2 diagnosis. Unless maybe when he was first diagnosed, his body still made some insulin? My husband was 23 when diagnosed, and was diagnosed from the start as a Type 1, as he made no insulin at all, and got very sick. What we were told is if your pancreas just stops making any insulin, you are automatically a Type 1, even if you are in your early 20's. On the other hand, Type 2s do make some insulin, but it either is not enough, or else they have insulin resistance, and don't use it efficiently. And yes, Type 2s can get worse and quite often have to eventually inject insulin. This is what we have always understood to be true. Am I missing something here? If I am, please tell me! As for the spouse being a "Type 3 diabetic," I was a bit put off by that, too! As far as I know, there is only Type 1 and Type 2. Sounds like the other terms are being tossed around pretty loosely.



Oh Lilly, I'm so sorry to have confused you! No, hubby DID produce insulin when he was first diagnosed. He's one of those type 2s that's had it sooooooo long - he's now quit producing insluin. According to his nephrologist. So much insulin resistance that's why he's on humulin ru 500 concentrated - 5 times the strength of regular insulin. We figured out when he was in the hospital that he would need maybe 18 injections a day if he were still taking the regular type insulin. He just needs a lot. And while he dropped from 32/20 units pre surgery (yep, that's 52 units per day of the concentrated insulin, so take 52 x 5 (converting it correctly is nearly impossible to do).....he was down to 18/12, but sadly, that is creeping back up the scale as he takes in more food. Right now he's back up to 24/18. That's 24 units in the morning and 18 units at night. Yes, there are "special" needles for this that read units rather than ccs. So it's even harder to convert. Remember I said I had argued with 3 different physicians in the hospital as they all wanted to take him from 32 units of the concentrated stuff to 32 units of regular insulin, then half that because he was without food.  I'm telling you - they are all idiots!!!

New to this wrote:
I've sat back a while reflecting on this post. It's still painful for me to think about that night. The catatonic night I found you had addressed my comments. I can’t think of a way to describe how I felt that doesn’t come off sounding like a tired old cliché. You had been through so much with your DH at the hospital. Yet, you gave your time to help the stranger from the other side of the words on your computer screen. Then I saw the list of the Missing; all the other strangers behind the words on your screen. Contemplating the whys of their silence is deafening. Staying anonymous keeps us safe, makes us brave and gives us courage to be open and honest. But, I hadn’t thought to what happens when the voices go silent. It makes me think of the faded posters I’ve seen of loved ones lost. It makes me think of the high price you pay for the kindness of your heart. Oh DW, you make me think a lot. S


First - notice, I do come and go. There are moments when I can't help others.  But I do try. There are times when my personal life just overwhelms me and I either don'thave the time to check this blog.....or I don't have the emotional energy to do so. But there are other times when I "need" to read what everyone else is writing. I need to be in a support group. I need to get hugged. I'm pretty sure we all go through those phases. I'm going to just guess that based on the statistics I gave in an earlier blog - most of the silent women simply left their spouses. And when they did, most likely, they had to get a new email address, maybe a new computer. Maybe they lost the link to my blog....I just want to think that they are happier now, that they have found a new life and that they are out there smiling!

And then she wrote:
I love how you stand up for yourself -the spouse. Yesterday I read your "Type 3 Diabetes" post. It got me thinking. I came back today re-read it and followed a few of the links. I laughed so hard I almost shot coffee out my nose when I was reading in -interesting article- "These are normal couples struggling with abnormal situations," Fisher says. "It is not that they are crazy or sick: It is a new situation. It is a husband, a wife, and diabetes -- a threesome -- and diabetes is often the elephant in the living room that never gets mentioned." (Either I don't have an original thought in my head or thoughts about being married to a diabetic are universal.) Being new to this I feel like I have so much to learn to help the man I adore. Then I wonder if I'm just so afraid of the monster I want to do what ever I can to keep it away. Then I wonder if I'll stay sane. Then I come back to the grounding voice of experience. Thank you DW. I'm with you. When I married DH I took his last name. However, I get perturbed when I am addressed or introduced as Mrs.(his first name)(his last name). I want to inform these people that, "I have a name and I've gone by it my whole life, if you have forgotten my name I will happily remind you." But,I don't. ...Sometimes I am able to use my filter and not blurt. So again DW, I'm with you. I do not want to be diagnosed or addressed as a Type 3 Diabetic, it's his disease and he can keep its title all to himself. Love, S


Well......it's good that we can see the humor in what other's have to say. I especially wonder about writers who are "educated" yet have never lived the experience. I always wondered about a therpist who is trying to help me through an event that never lived the event. I know they have been trained to say, "there are certain steps that we all have to go through in any process...." It's about that moment that I tell myself, "just make it through this meeting, you do not ever have to return." And usually, I don't go back.

While it is true that there are certain steps we all go through....we all go through them differently. And a therapist who has never been faced by a spouse that has just slipped off his chair and slid down to the floor because he's gone into a diabetic coma.....well, they can hardly give me advice on how to handle my emotions in that moment. LOL!!!

It took me years to understand that. I take what I can from a counselor and do what I can with it. But sometimes, it's just not enough.

Here'sa question for all of us. Are we "normal" couples dealing with "abnormal" situations? If my statistics are correct, then diabetes is not "abnormal". Perhaps the fact that our spouses don't handle it very well, maybe that's "abnormal".....but based on the divorce rate, I really doubt that!

I just don't feel like we are a "normal" couple anymore. OK, when we got married, we were. But then he went on insulin. And he decided not to manage his diabetes. But now he is doing a pretty good job of managing it. But with all the other complications....we don't have sex. Is that normal? We don't go to the movies and that used to be a weekly thing we did. We don't go out to eat and we used to do that almost every day. We still love each other very much, but we have given up so much to accomodate his disease. And yes, I do go to the movies with my girlfriends, and I go out to lunch with them. But as a couple.....he and I are a far cry from "normal" and it is due to diabetes and all of it's complications after his body has lived with this disease for 33 years. Still....it's good to laugh at what others write about our lives.


Lynn wrote:
AMEN...you are preaching to the choir! That is exactly what made me make him order and fill his pill containers...sure I will ask him if he took his meds...keep insulin in my purse and extra needles when we got out to eat but he has to own it and he finally did but i did get the guilty looks (from one of my sons and some women) like i was abandoning a child or something...I was motivated because i knew on all levels that if i had the disease i would be ordering and filling and managing MY diabetes myself....period. So if i can do for myself, he can too. Helpmate, not indentured servant. YEAH, SISTER! HUGS


It did take "this" choir member quite some time to do what you have done. But I will say I'm on a good path now. Until this last round of problems, I would even go to the clinic and pick up his Rx for him. No more. He is now on the mail order refill plan. They get squished into our mail box. Literally. His refills come in a package so huge that most days, the poor mail man has to bring them to the door. But I no longer drive 5 miles to the clinic, stand in a line forever to get to the counter, then go sit and wait til his name goes on the board, then go stand in an even longer line to pay. Thank goodness I found the strength to put my foot down on that one!!!!


Tom’s wife wrote
YAY! what a great response! first of all, I hate labels in general but especially those that put us into a box that is stupid you are so correct, we don't have the disease and we are not required to address the medications. when we do -- we do so out of love, not out of necessity. the diabetic does that. its his disease, he has to deal with it.


Here's the problem. There are so many diabetics out there blogging away, telling us how much they rely on their spouses to do so much for them. And they get so angry at me when I tell the spouses that you do have the right to say no. You have the right to walk away. You have the right to leave. You are not a diabetic. They just seem to think that this is a "couple's" disease! And I have been arguing that point for 5 years now - to the point that other bloggers continue to put me down when they write about me. Problem is, they are all diabetics who just can't equate to what our lives are like.

Bottom line. I'm pretty healthy for my age. Don't take any prescription drugs. Never have. Do not have any illnesses, ailments or diseases. Why on earth would I want anyone to classify me as a type 3 diabetic? Yikes!!!

On the other hand, if it would qualify me to get social security disability benefits, mabye I could tolerate the label.....what do you think? LOLOL!!!

DW- who occassionally has a sense of humor about most of this!

Monday, March 28, 2011

Type 3 diabetes

According to ehow.com, (and several other sites) say it's when the brain stops or reduces the acceptance of insulin within the brain's cell receptors, aka brain diabetes.

According to wikipedia, it's gestational diabetes, or type 1 that is insulin-resistant, or type 2 that needs injected insulin.....

Over at naturalnews.com, they say it's a blood sugar spike when you are exposed to electrical pollution!


Type 4 diabetes is fibromyalgia?  A guy even wrote a book by that title.
 Type 4 diabetes

There is some talk online about type 5 which is obesity caused.

At dlife - they want you to believe that you are a type 3 diabetic if you are a spouse of a diabetic.

There's another website that claims spouses and loved ones are type 5 diabetics.

I sort of see the humor in all of this, but in reality, you either get it as a child, or as an adult.  Everything else is probably a subset of those 2.  But then.....when does a child become an adult?

My hubby acquired his diabetes at age 22.  He has always been diagnosed as type 2.  His pancreas does not produce any insulin.

But I just wanted to write about spouses and loved ones of diabetics.  There are those who love the concept of being classified as type 3 (or type 5) diabetic.  I get that.  But on the other hand, I don't get that.  I do not have diabetes.  I do not have a disease.  I do not require medicine, insulin, my blood sugars don't go high or low.  It's really very simple - I'm not a diabetic.

Is this a means for diabetics and the diabetic community to force spouses and loved ones to be more involved?  To smpathize with their plight?  "I'm type one and you have it too, you are type 3?"

Is this a way for them to get us more involved?  "I can't eat candy because I'm a type 2, and you shouldn't either because you are a type 3?"

I have to wonder!

I read a post on dlife about diabetes and your partner

I found an interesting article claiming that depression is high amoung spouses of diabetics.  I liked the description that we are not a couple, we are a threesome - him, me and diabetes.

But no matter how you say it.....I really don't like it when anyone suggests that I "have" to participate in this disease.  It is his, not mine.  If I'm here when he goes low, I'm more than happy to get a glucose tablet for him.  But I'm not about to sit home waiting to see if that's going to happen, so he has to learn how to find them, how to keep them in his pocket, how to test, how to recognize when he's going low.  It's 100% his job.  I'm just a lucky benefit...when I'm here!

It's not my job

And it's that healthy attitude that keeps me here.  It is something that I have had to learn.  It is something that most diabetics argue with.  It's not a family disease.  I'm not a type 3 diabetic.  I simply happen to be married to someone who has this disease.  It's his.  So maybe we should start asking the diabetic, "what's more important, your health or my sanity?"  I think I'd get a different answer depending on where his sugar is!  LOL!

DW

Sunday, March 27, 2011

What ever happened to.....


I went back through some old comments.  Over and over, I saw "I just found your blog...you saved my life...you saved my marriage....I feel like you are me....."

so many people, mostly women, would pop in, make comments for 2 or 3 months and then leave.  I wonder where they are now.

Did their marriages last?
Did their diabetic husbands die?

I most miss Fran.  She would write early on and often.  Always such supportive comments.  Last I knew she was moving and thinking about leaving him.  Then blank.  Nothing.  Never heard a word again.  Did he kill her?

We use such anonymous names to protect ourselves and our families.....that when someone stops writing...I have to wonder what happened.

There was an annonymous poster who posted all the time.  Then nothing.  Just gone.

And Faith.  Here all the time, then gone.  Did her husband die?  Did it get too hard to read about what I was going through?  I can only imagine.  Whimsy2 was posting a lot and then nothing.

All these and more:


Jean
Robin
Whimsy2
Debbiej
Fran
Ellen
Sara
Anne
Laura
Kim
Worried Wife
Faith
JustLittleMe
Amylia
Lilly
M
Cat ofMany hats
Lyrecha
Widow of a diabetic
Christine-Megan
Mrs. B
Plumber Wife
Missionarysue
Lisa
Brenda G
Lady Marian
Pam
Mary
Neil Curtis – he hasn’t posted since last September
Andmaree
Florence

I wonder:

1. If you were diabetic, did your disease take you from us?

2.  Did it get to hard, to close to home, to read what I wrote?

3.  Did I make you mad because you think this is never going to happen to you?

4.  Did you get all better and didn't need to read about diabetes any more?

I have a feeling it's not # 4!!!  I have a feeling the wivesleft or thespouses died.  I wonder if I would write about this if hubby dies.  OK, WHEN hubby dies.  I wonder if I will still try to reach out and support other women who are dealing with non-compliant spouses.

Although, perhaps, I need to change my description on this blog.  I would have to confess that after this last surger (ok, for one whole entire month now) he has been very compliant.  But he was compliant after his open heart surgery for 3 months and then that came to a schreeching hault!  So I'll wait another couple months and just see what happens here.  

For the most part, writing is therapy for me.  But I can imagine that reading what I write has to go to the heart of some of the readers.  If they are in denial, then of course, they will click off.  If it's too painful, they will click off.

Lilly, do you know you made your first comment on 3/28/08? I don't know of anyone left who has followed me longer than you have!

Tom's wife - the earlies comment I can find is 7/6/09.  Thank you for not leaving me alone!  You were the first to create your own blog and write about your experiences in order to help others.  I feel so completely connected to you....and I don't even know your name!

Lynn....your last comment:

jammie Sunday...I love that...and I am doing that too...Keep on keeping on and again, I hope you are still forging ahead with your plan to sell the house and move near your sis...that makes me happy and all I know you from is on here. HUGS

well,  by keeping myself anonymous here....you probably actually KNOW me better than anyone who is part of my life outside this blog!  I keep the 2 separate.  But it is this place, this blog, where I can be the real me.  I can talk about the hurt, pain, fear, anger.  And that allows me to be a nice, polite, "christian" type wife.  Otherwise, I'd be screaming my head off in public!  LOL!!!

Our personal circle of friends is pretty small.  Interestingly, there are no other diabetics.  Hubby does not tell anyone that he has diabetes.  Only in the past 2 years have I told anyone other than my sisters and brother.  Our next door neighbors know because he went into a diabetic coma at their house.  They now keep glucose tabs and orange juice on hand.

I have many moments when I want to open up and share who I am, where we live, what our life is.  But for the moment, I do think it's better to remain the way I am.  It doesn't make this any less real, but perhaps protects the privacy of my husband as long as he is working.  And protects the privacy of his medical staff.  Who might not appreciate some of the things I say about them.  And might not be so supportive of him if they knew it was his wife out here blabbing away!  LOL!!!

I started this blog on March 22, 2006.  I have not made 511 posts in the last 5 years.  I don't know of many diabetics, let alone their spouses, who are posting the prognosis of their disease like I am. I don't post every week, sometimes I don't post every month.  But then there are times when I post twice a day.  It just depends on what's going on.....and my need to write it down.

Newtothis - I am taking your advice and copying over all the blogs into a word document.  Ok, several word documents!  It took me 2 hours to get 2006 copied over and that year has less posts than any other year.  So it's a project I will work on this week.  Thanks for the advice!

To all the wonderful comments that women have made here over the years, thank you.  I pray that those of you who have moved on are safe and loving life. Know that you helped me through the moment and for that, I will always be grateful.

DW

Catatonic moments.......


newtothis wrote:


Dear DW, Yes, your MBA is showing. Good for you and I am not surprised you've earned one. Isn't life such a funny set of occurrences? We never know where they will take us. However, I do enjoy meeting the ones whose paths these occurrences have cross my own. Hopefully you make and keep a hard copy of your blog. I never fully trust a computer or site to safely keep/hold information. (I've seen information disappear from the "net" as well as personal computers...but that is a different story.) You have the guts of a book here. With the statistics rising and your intimate knowledge, you have an unique insight into this horrible disease. Not just how it effects its host, but what it does to the spouse. Have you thought about this? The last thing I want is for you to stop your blog. I've just found you! Your advice for me very well may save my spirit if not my marriage. I bring this up to you because being around PhDs I hear about lots of book deals. And with your updated "diabetes statistics" how many of us are out here in the cold, alone? We need someone like you to champion our plight. ...Yes, I am being a little dramatic here, but my P-DH had a marathon 24 hour rage session on me. I was pretty much catatonic by the time it was over. Last night I looked for you and you were there. You answered my comments and helped me. There are a lot of me(s) out here and the medical community is not helping us. Just thought I would ask. Thank you for your advice. The next time he starts "raging" I plan on pouring a glass of OJ and set it on the counter, tell my boys we have somewhere to be and get us in the car and be somewhere else for a few hours. Whatever I come home to couldn't be worse than what I've put myself and children through this past weekend. Needless to say when it was over he appoligized and said I didn't do anything wrong. He then spent the night throwing-up and I have spent the day checking on him asking if he ate. Love to you, S

I had to laugh....because I woke up thinking to myself this morning, "I am so old to this!" LOL!!! And really, I'm not at all. Hubby has only had difficulties with this in the last 5 years.....and I only started going to his medical visits with him about 2 years ago when he started in with the heart problems. Prior to that....everything I've written is just my feelings. I did very little research. But I've made up for that lack in rapid speed, that's for certain.

No, no thoughts on a book. But many thoughts on some kind of speaking tour. I just think the medical staff would never sit down and read a book. Who would care? It' some statistic's wife. It's just not real. But if I could stand in front of them and have a powerpoint presentation with statistics.....show them the evidence, tell them my experience at the hospital and ask if they really want to help the patient.....

and still I think they would just look at me as the incredibly insane wife of a patient that they think would have done just fine without me. After all - he is alive. They were the staff. They "took care of him". No credit to me that I stood there and corrected their mistakes, charted their errors.....employees just do not want to hear that kind of stuff. They only want you to tell them what they did right, wonderful, terrific. Not what they messed up on!

Hospital adminstrators don't want to hear anything negative either. So here I stay, just blogging away....hoping that in some small way it gives insight to another woman who is in my shoes, struggling to get through a single moment, worrying about where the strength to get through the rest of the day is going to come from!

I loved the term "catatonic". It's exactly where I am at this moment.....and hubby hasn't been in a rage. I'm catatonic from the hospital experience. The kind of catatonic where you lack movement, activity or expression. I am simply blank. And I know why. I am struggling to go through all my notes and put them in some semblance of order.....and each time I read anything....it hurts. I physically and mentally go through the event again and I just feel sick. So I stop. And then I get paralyzed and can't move forward with this project.....that I know I need to do while the events are still fresh enough that I can get them into their proper order.

But it also draws me right back to the other catatonic moments. When you go blank to avoid hearing the harsh words that are spewing forth from his mouth when he is in the middle of a rage. Or the paralyitic freeze you go into when you fear that he might hit you, or pick up the kitchen knife and come at you.....knowing full well that he has no comprehension whatsover of his actions - so you "freeze" - become void of all expression, because the tiniest little flicker out of the corner of your eye might be what sets him off.

Or how about the never ending catatonic moments when you listen to see if he is breathing. He's asleep on the sofa and you look at him from across the room and try to see if his chest or stomach are moving - any indication at all that he is still alive.

I have to agree.....leaving and coming back....how could what you find when you return be any worse than the barrage of hateful words and looks he is going to continue to spew forth if you continue to stand there? I might not even leave a glass of orange juice! Depends on the severity of his actions/words. I might just run and get the heck out of there as fast as I could.....especially if I still had kids at home.

This is not an easy life, being the spouse of a diabetic.  There are tough choices that we have to make moment by moment.  And there is very little support for any of us in the medical community.  For me, writing has been the catharsis.  The thing that gets me through moment by moment.  Gaining so many friends has just been a bonus to what I know I have to do to survive.  If I have helped you in any way, then that is God's blessing to me - as it was not my intent from the beginning.  I don't have the answers.  I've not been trained in counseling.  But I can certainly share my own experiences and if you gain from then, then I am more than happy that I am writing my episodes of the ups and downs, the never ending roller coaster, that merry-go-round that we each live on, in and with.

Today is a quiet day.  A jammie sunday.  Wishing each of you a peaceful day!

DW