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

making progress

He goes to get labs in the morning, so I thought I'd predict what they will be!

His A1c will be higher than it last was. He's eating more. When he tests, it's still in the 280s. The Endo keeps upping his insulin....but the numbers don't go down.

He will still be very anemic. I know this because he is still taking loads and loads of naps. Sleeping way too much. Only working half days.

I'm praying that his creatinine will maintain, but I have a suspicion that it is going back up. Hopefully not too much.

His cholesterol will be off the chart. He's eating red meat trying to get the red blood cell count back up.

So, when we get the results, I'll post and we'll see how I'm doing. LOL!

It's been a nice week to tell the truth. I've had a couple of days out with girlfriends. Did a little spring yardwork. Did a little playing in my studio. He's been pretty quiet. Not talking much. Sleeping a lot. Watching way too much TV. But it's keeping him quiet. He is going to bed about 6:30 every night and that worries me. He doesn't go to sleep, but will nap off and on until about 10 pm, and then go to sleep until 7 am. And most mornings he sleeps past his alarm.

But as long as he is anemic, I would expect him to sleep too much.

He is starting to realize that he's making mistakes. He booked airline tickets and didn't put our full names on them. So I told him that he needs to call the correct that tomorrow.

I'm in the process of going through numerous pages of notes from the hospital and putting them all together. Quite a task if you ask me. But I need to do it before this next round of specialists visits that start on 4/1 so I can hand them out. I doubt they will get read....but I know no one is going to read through his 6" thick chart!

Overall, it's been a good week.

DW

Anemia

Oh, the things you just keep learning - does it ever end?

The kidneys produce erythropoietin (EPO) which stimulates the bone marrow to produce the proper number of red blood cells neeeded to carry oxygen to viatl organs.

When the kidneys fail, EPO productions tops.

Diseased kidneys don't produce enough of it.

Anemia sets in.

When hubby was on dialysis, he got daily injections of EPO. But none since coming home.

How can you tell if you are anemic? Pull the lower eyelid down. If it is bloody red, then you are not anemic. If it is pale pink or washed out, then you are. Pretty simple, pretty accurate test for anemia.

Hubby is seriously anemic and has been since hospital discharge. Not getting any better. He goes to the nephrologist on 4/1 and we will talk to him about EPO injections.

He's taking iron pills. Not doing the trick.

He's eating red meat once in awhile, but that's hard for the kidney's to process. Sort of in a catch 22 situation.

As long as he remains this anemic, oxygen is not getting to tissue and organs. That's not so good. Reason why he seems to be confused at times? Forgetful? He's obviously weak - getting stronger, but man, is it ever a slow process.

I read somewhere that anemia can start with 50% of kidney function. I'm wondering if a unit of blood might help him out. Other than being weak, he is doing great. Recovery is just such an amazingly slow process in so many areas. We tried to go out to breakfast today - second time eating out in a month, and he needed to sleep almost all day long.

I'm starting to think life will never return to normal. Just too may complications from everything he's been through.

DW

Ahhhh....playing!

My sister came down yesterday. Again. We figured out that we are 2 1/2 months into 2011.....and she has spent a full month at our house. Mostly helping me through hubby's surgeries and recovery.

But this time, she came down to play. And that is all we have done. Hubby is doing well enough that I'm comfortable leaving him for extended periods of time.....but never more than 30 minutes from the house. He's done just fine. Sis and I have been shopping, doing art, sorting through craft things....and I am exhausted....but ever so happy.

And while life will never be "normal".....this is so good for me and for her. We are still talking about everything that went wrong in the hospital, and everything that's gone so right since he got home. We are doing fun things together.....being sisters. How healing is that? While I have 3 sisters, this one is my best friend. We are just a year apart in age and have so much in common....but are completely different. Basically, we just enjoy being together - in good times and in bad times.

It's so theraputic to simply get away from diabetes. To go off and spend a whole day not thinking about it at all. To be "free" from the worry. It was wonderful! And to tell you the truth, I don't feel guilty and I know I need to do this a little more often.

Tomorrow, day 3, we are going to stay home, but we have an art project we are going to do that will consume the bigger share ofthe day. I'm really looking forward to that.

The great news is that yesterday afternoon, we managed to get over 3/4 of our basement completely cleaned out. Took a full load to the thrift store today and she is taking a car load to a family in need near her. She lives nearly 3 hours away from me, so it's not like we can get together every week. This year has been exceptional due to hubby's hospitalization. But it's made us realize that we both want to live next to each other and amazingly, hubby has agreed. I think he sees how much support she has provided me. It's just that with both guys working so far apart...it's going to be a bit before any of us can move.

But to that end....my goal for this year is to downsize enough that we could move into a 1 level home....something wheelchaire accessible. I truly had never given a wheelchair a thought and when I attempted to get the 210 pound physical therapist down the ramps, I realized there was no way I could get my husband down them.....let alone up them. We simply have to move while we still can. Something I had honestly never given a thought to.

So, my sister and I were chatting today and she asked, "5 years ago, did you ever think you'd need to have a wheelchair and ramps in your home?' Of course, my answer was that I hadn't even considered it a year ago!" Interesting how the side effects of diabetes sometimes have a greater impact on our lives than what the actal diabetes has.

Bottom line - he's doing ok, and I'm finally having a bit of fun! Know that it won't last....but enjoying it while it does!

DW

I'm going to have a heart attack yeT!!

I was in my studio working on an art project when I heard the loudest rumble type noise coming from upstairs. I ran up the steps as fast as I could calling out hubby's name and found him flat on his back on the floor. He was conscious, but dazed. He said he was standing up, putting his back brace on. He started to get tunnel vision and before he could move, he got light headed, his knees buckled and he went down, falling between the end of his bed and themwall, hitting both on the way down.

I told I'm to just lie there. Took his bp which was 108/77, pulse was 72. He took his glucose which was 165.

We got him up and into his bed after about 10 minutes on the floor.

So we had an interesting conversation.....what do I do if he does go completely unconscious. He reaffirmed that he does not want me to call 911. I asked him how long I go leaving him unconscious. He said he did not want me to call 911. He does not want to go to the hospital no matter what.

So I have this vision of him being outmcold for 3 weeks. Funny, but it's not. He scared me to death today just going light headed....what will I do when he passes out?

There has to be something going on. He doesn't want to call the doctor. So I will just blog it here so I have a record of what happened.

I keep thinking that if I have a heart attack, then I don't have to go thru this!!

Dw

My "sister" wives.....

Your comments get me through the day.  Thank you so much!

Tina wrote:

How have I survived this long ... well, I just love him. Year 1 went into year 2, into year 3 and so on and so on ... you get the picture. It has been really hard. As we are in year 6, I have been through the ups and downs, the driving nightmares, (I will not get into the car with him if he even thinks of driving, I am the permanent driver). As I read all of the posts on this site, I really feel for each and everyone of us that have to live through this nightmare! In my situation, my hubby has really been sort of healthy (maybe healthy is not the right word, but I guess he has not had all the "bonus issues" that I have read about). It has caught up to him. As I chat, he is in the hospital with a very high heart rate (they are treating him to hopefully make sure he does not have a stroke) he has a blood infection, (not sure how or where he got this), and the list goes on and on ... but onto the hospital care as a whole. He is a diabetic on dialysis, in the hospital with very little restrictions on his fluid intake, are you ******* kidding me. Obviously, this man cannot control his fluid intake by himself, so why do the nurses just come in and give him cups (20oz.each) of water and of course, my favorite, ginger ale (not diet, duh, he is a diabetic) and of course, he says nothing and just drinks it all down!!!!!!!!!!!!!! I guess when I really think of how I have survived the last 6 years, I will say prayers and lots of them! A really "bad" sense of humor! And, finally, just one day at a time. I have an awesome family whom I have gotten a ton of support from. I was listening to a talk show on the radio the other day and the speaker said "you can't climb over crap ... you just have to go through it". It made me chuckle to hear that, but maybe it's true! So I guess I just am in my really, really high "fishing boots" and "trudging through the crap!" So onto my "bad sense of humor", I will end my story here for the night because I gotta get my rest, because I just feel that it's going to be a really "crappy" day tomorrow!!!! Sleep well my sisters ... my prayers and love are with each and every one of us!

Tina,  very good advice - to wade through the crap one day at a time. It's all any of us can do.  As for the high heart rate - high potassium?  I read that can happen easily on dialysis.  Happened to my hubby.

I remember they gave hubby straight Sprite in the hospital - not diet sprite.  I wondered what they were thinking!  But they did limit his intake quite seriously.

You are very wise to be the permanent driver.  I, too, will not go anywhere with hubby driving.  Well, fortunately, at this point, he's not been released to drive. But if he does need to go somewhere, he will take his truck and I don't go with him.

As for the blood infection, be aware that if they dose him with high levels of antibiotics, he is likely to end up with c diff in the hospital as did my husband!

Overall, I think hospital staff needs training on diabetes.  You would think with the high numbers of diabetics in this country that it would be foremost in training. But apparently, it isn't!

Here's prayers that your day did not go as bad as you anticipated!  Hugs coming your way!

Lilly wrote:

Best wishes to Tina, as I can't imagine how hard 6 years of dialysis and counting must be! She could probably teach us ALL something. As for your hubby being cold, is he running a fever? Usually when my husband is complaining about being cold, he has one. Might want to check (or maybe you already have). Wondering if there could be a low-grade infection going on after all his problems in the hospital, etc.

No temp, no low sugar. I think it was just a "thing" he went through. I turned on the fireplace, covered him with blankets and 2 hours later, he tossed the blankets off and turned the fireplace off. Thank goodness!!! :o)

Lynn wrote:

My hubby was in denial for years... so that is why at some point I told him I was not going to call in his pills pick them up and put them in the weekly pill dispenser...I wanted him to own the fact that he is diabetic...It was scary and one of our sons was mad at me...thought I didn't care about him...now he sees for us it worked/works...but hubby can still take care of it...if the day comes, I will help of course...but for him it MADE him accept his disease and deal with it...I also did it because I felt that if I had that many health problems I couldn't see him taking care of my pills etc...I knew I would have to...and I do for me now that I do have a disease...so any way...they HAVE to accept and embrace the disease...otherwise it's ALL on US and that's not fair to either of us. RIGHT LADIES? Enjoy the bubble bath...I started doing yoga and that seems to help me with everything! HUGS and LOVE PS cold? how is his thyroid?

Lynn, hubby sots his own pills, has his cell alarm set to take his insulin, he renews his own RX, he does all that. He has too. Yet he continues to admit certain things like having high blood pressure. For some odd reason, in his mind, if the BP monitor reads that his BP is good, then he doesn't have HBP....even though he takes meds to keep it down low. Strangest thing in my mind.

In the last 2 years, since his heart problems, I've been attending every medical appointment with him. Before that, I never went. And I found out what the problem was. He would go to the endo and tell her that he didn't have a BP problem! He would visit the nephro and tell him he didn't have a sugar problem (even with an A1C of 8.0!!!) So when I started going I'd just quietly say "but he does take atenolol for his bp"....or "he takes 32 units of Humulin RU 500 Concentrated in the morning" and the specialists started "getting" it. They are outside consults to our HMO and do not have access to his medical file. So I started copying stuff and putting it in binders and taking it along with me.

When he first went to see the cardiac specialist and told her that he did not have a BP problem - I nearly shot through the ceiling. I was so glad I was there. She took one look at me, rolled her eyes, held her hand up to "silence" me before I could get a word out and gave him the lecture of his life.....he was there because he absolutely had a blood pressure problem....and off she went. She did not mince words and I have loved her from that moment! First specialist who saw right through him! :o)

And Lilly wrote:

Unbelievable that the dialysis machine (actually broke!) twice. I can only imagine what that was like. I don't remember any machines breaking, but I do remember my husband going to have dialysis 3 times a week, and being on the machine for 4 hours (add at least another hour wait time and making sure the bleeding stopped before he left), in a large room with 11 other people all wrapped up in blankets like cocoons to stay warm. Most would fall asleep during the process even though they each had a television and headphones, none of them wanted to be there, and they all still felt like crap when they left. And then at least some would have horribly painful cramping later as a side effect of the dialysis. Knowing that, I don't ever want to do dialysis with him again, and I don't have the phobias like you do. Didn't mean to be flippant about your problems with that. It has to make everything so much harder! But no matter how you slice it, dialysis is a really rough way to have to live. I also wonder as you do, if the denial is exactly that: a survival mechanism. But it is still unreal the things that they will swear by! For example, hubby gets mad at me when I tell him he has heart problems. He will say: "But I don't have them anymore, because the bypass took care of it." Sometimes, you don't know whether to laugh or cry. And yes, I think our husbands are very much alike in this. Interesting that yours also loses track of time. Mine will always tell me he did something "yesterday," when I know that sometimes it was several days ago. The short term memory thing is troubling, as I'm not thinking it will get any better.

Lilly, just to clarify, it was two different dialysis machines.....each one of them broke!!! and I never took you as being flippant, not for a second! Your experience is quite valuable to me as I went into this cold turkey - having never done any research or asked any questions about dialysis. Because my hubby had always said he would never agree to dialysis, it was all quite frightening to me. I had to sign the release forms and that in itself was a huge step.

I know what you mean about not knowing whether to laugh or cry. I do really try to laugh most of the time. My husband, just this week, told a doctor that he no longer has heart problems. Well, I hate to tell him this, but remember, his veins were so bad they couldn't do 5 bypasses on him....they only found enough veins to do 3 bypasses. What does he think is going on in the 2 spots they couldn't bypass???? YIKES!!! We go to see the cardiologist on 4/20. I am quite anxious to see what she has to say when I tell her his heart rate was 140 for 2 days and 130 for another 3 days after surgery. It did not go up and down....it remained that high for 5 days. Now, tell me that didn't do some damage to his heart???

When I was talking to him this morning about my nightmares last night, I said that I thought the only thing he really remembered was his dry tongue. And maybe that was a true blessing. His quest for something wet, for ice, for a swab, for a wet washcloth....his desparate cry for just a sip of ice.....kept him from knowing all the other horrible things that were going on. And that he will never have any memory of it. But I was sitting right there and while he only remembers how dry his mouth was.....I remember 100% of every ounce of what was going on to every part of his body.

And that's where a diabetic has us beat to heck! They don't/won't/can't remember the things we do.

Love all your comments because I know we are in this together.....one day at a time......sometimes just one moment at a time.

DW

The photographic brain

I woke up this morning having another nightmare.  Ok, I don't know that they are nightmares so much as horrible memories that come in the middle of the night.  But I realized that I had not told him everything.  So I laid there until he woke up and then told him about that first Saturday night in the hospital.

There was a canister looking thing they had put under his bed.  It had a flexible plastic tube, about 3" in diameter going into the canister.  Actually looked like a huge pressure cooker.  Stainless steel.  Sealed tight.  That hose went to his rear end. He was on c diff precautions and I know they were collecting whatever he was passing.  What I didn't see was where/how the 3" tube decreased in size to be entered into his rectum.  So of course....there's the "nightmare".

But he also had a cath in his penis.  He had a round rubber ball at the end of a tube coming out of his back that was draining blood.  His stomach was distended beyond belief (was it uremia?) and his tongue was coated with about 1/16" fur that was olive green and brown.  Getting 6 ltr of oxygen, and 6 IV bags going into him.  He had been NPO at this point for 6 days and the NG tube was going down his nose pumping putrid brown stuff into a 2 ltr tank on the wall.  His creatine was at 8.8 that day, he had the dialysis port in, plus several other iv pic lines going in him.

I didn't take any photos.  Other than the one I took of his 3" thick chart (didn't think anyone would believe me in the day of technology that anyone still manually charted!).  But the image of him that night is forever embedded in my brain.  I remember telling my sister that when I leaned over him, I smelled the smell of "death" coming up out of him. In trying to describe that to him this morning - rather difficult.  How does one describe the smell of death?  Vile, rotton, inhuman, something you don't smell anywhere/anytime.

I told him that I remember being so afraid because he was so distended that I thought for certain the staples in his incisions, both front and back would come flying out and that he would burst wide open (another recurring nightmare!).  He was literally that physically distended. To this moment, I don't know what kept the staples intact during that time.  He said that he did remember being distended, but that mostly he remembered his tongue and wanting to die because it was so swollen and so dry.  Well, it may not have been dry so much as it was hairy and I'm sure that no mater how many ice chips he sucked on or sponge swabby things....it would have felt horrible.

Amazing to me how the brain sees things just like it was looking at a photograph. I hope in time the memory fades. Ok, I hope that the brain comprehends that it is just a memory and that I can make it through the night without seeing the "photograph".  Would be a very good night.

But I'm also hoping that in sharing more and more of what I remember with him, he will know what a complete miracle it is that he is here today, that he has made such a speedy recovery, and that even if it takes him 6 more months to regain all of his strength, he is a living, walking, breathing miracle!

DW

her husband's been SIX years on dialysis and still says it's not diabetes???

Tina wrote:

OMG! What a nightmare we are all living through! My hubby is in esrd, on dialysis for 6 years, on transplant list (numerous complications stop the transplant from happening) ... has HBP, diabetes, and all the other wonderful problems that all of our hubby's have, but of course, it is not the diabetes! He is totally non-compliant and takes meds to "control HBP, and all the other issues). He was admitted to the hospital today after he took a bad fall, high heart rate, and just totally feeling terrible. But, I must remember "it has nothing to do with diabetes" ... are you ******* kidding me! Anyway, my heart breaks for all of us ... it is so hard being a "wife of a diabetic" ... Love and prayers to all!

Dear Tina,
So happy to have you post your comment.  It is utterly beyond my comprehension that someone who is in ESRD is still in denial!  Is that where the current medical world has taken us?  I know that the medical professionals have been trained to take any spot of hope they have for the patient and focus on that.  They are not allowed to say the truth as to what a "forecast" for their life might be.  But seriously....esrd and he's in denial?

But it gives me a little insight to a diabetic who is in denial.  I suppose it never ends....no matter what stage they are in. If they can't get past the denial process....they will never accept what the disease does to them.

How do you survive?

How have you managed 6 years of dialysis?  I am not that strong.  I know I would leave.

How can he live that long and not be compliant?

I know I could learn from you.  Seriously.  If you feel like writing again, give us some insight as to how you have survived this long.

**************

Having a terrible day here.  Someone hijacked my email and sent out one of those things saying I was in a foreign country and to send money.  Got that all fixed, then the ipod I was transferring music to locked in sync mode.  Had to figure out how to undo that and start over.....then the fan that I put my laptop on burnt out.  I swear....I think I'll go to bed and just stay there!  LOL!!!

*************

Hubby is really cold today. House is at the normal temp where we always keep it.  I turned the fireplace on and he is under 3 blankets.  I'm thinking I'm going to go put a bikini on so I can survive.  Had him test and he's not running low, so no idea what's going on to make him so cold.  He seems to be more tired today.  Took a 4 hour nap earlier.  Not sitting up as much, says he's just exhausted.

Everyone around us has the flu.  I put a sign on the front door asking people to not come in if they've been exposed to anything.

Think it's time for a long hot bubble bath.  Maybe that's how we survive....pamper ourselves from time to time.  Today I'm trying to survive from one crisis to the next!

DW

More comments and thoughts

Well, if nothing else, I will keep you busy reading my blog!  LOL!!!  I know we don't go back and read posts, so I like to bring them forward and make my responses ot them in a blog.  Sort of keeps the continuity of the whole process of the journey in place.

Lilly wrote:

 Here's hoping and praying that your nightmares will eventually stop! This can't make for very good nights for you. I went through many emergency room visits with my hubby, almost a year of dialysis and all the side effects, and then the kidney transplant/donor surgeries. I feel very fortunate that I did not dream about these things when I went to bed . . . don't know what I would have done! Really hope it gets better for you. As for yours and everyone else's blogs: I think it is more for us, as we "get it" in a way most diabetics are incapable of. As you said, at first you got nasty messages from pissed off diabetics! The medical profession is focused on the diabetic patient (although they don't know how to treat them half the time), but how often do they ask us how WE are doing? And how can we possibly find a therapist who can actually understand and really help? I can't believe that everyone told you it was your disease. WOW. YES, we really do need to support each other, in every way possible . . .

I think those who have needle phobias, blood phobias and white-coats syndrome know that sometimes the nightmares never go away. I was going to do a separate blog on the dialysis machines.  When he was in ICU, they brought the machine into his room.  The 3rd day, the machine broke.  I don't mean that it quit....it broke.  3 hours into the process.  The 4th day, they brought in another machine and it, too broke.  How on earth can you have dialysis machines in an ICU unit that break????  Trust me, that alone is more than enough to cause nightmares!

At that point, I didn't even know that it's ok to stop a dialysis treatment in the middle of it.  I hadn't done any research.  I was completely unprepared for dialysis as we were not expecting it.  Trust me, I think at this point I'm completely preapared....I think I could give a seminar on it.  I could sure do a better job than anyone in the hospital did.  But because of my phobias that I have had since I was 10 years old....I won't do it again.  And he knows it.

And then she wrote:

Sorry, I had to laugh, as my hubby will tell anyone who wants to listen that he does not have high blood pressure or cholesterol, and he has no heart or kidney problems. He neglects to mention that he takes meds every day for blood pressure and cholesterol, and tons of anti-rejection medicine so that he won't reject his kidney. He also reasons that since he had a triple bypass after his almost fatal congestive heart failure, and also had a kidney transplant, that everything is "fixed," and he has no problems there either! It would be funny, except that he tells his doctors this, and if it is a new doctor . . . well, you get the picture. I (just like you) will tell him to his face, in public, that YES, he does still have those problems, and that is why he takes medication for it! It must be nice to live in denial. Wish I could make it work for me!

 The more I read about your experiences, the more I think our husbands are really quite similar.  I wonder if denial is more common than I think it is.  I wonder if it's their survival mechanism.  If they admitted all of the conditions that they have, could they live with it/themselves?  Maybe denial is a way to survive.  

Lynn wrote:

I had a similar experience on the adoption.com message board when trying to find support as an adoption mom (adopted one, gave birth to three)who was struggling with her adopted one reuniting with birth relatives and abandoning us for them. The pain of coping was unbearable and I sought out others...well, I found some but the birth moms and adopted people who wrote on the thread were so nasty at times i stopped going there...now we just email each other...so i get it...and yes, I think this blogging is for US...because we get it...we get each other...we have similar experiences in that we can't always have on the smilie face...sometimes we have to vent and rant and commiserate because we don't have it easy...it is challenging to live with someone who has diabetes. HUGS and LOVE...I LOVE YOUR BLOG!

And that, Lynn, is exactly why I do not post any of the negative comments I get from diabetics.  I know they do not understand what we go through.  I know they are in denial.  I know they are having a sugar low and being nasty just like hubby does.  So I just delete and sometimes I even ban them from making comments!

Tonight, hubby's parents called. I'll have to go back and see if I wrote about the problems I had with them the night I thought hubby was going to die.  Sigh.  So tonight, hubby was telling them how much I fought for him, how he would not be alive if it wasn't for me. (trust me, they hate me) and they didn't make a comment.  Not even a "thank you for doing this for our son."  Instead, his mom asked him what happened when he went high and low. He said that when he was high, he was irritated, and when he went low, he got sleepy.  I chimmed in and said, when he's low, he's really argumentative.  But I wonder.....does he remember anything when he goes low?

He told his mom he had been out of the hospital a week.  When he hung up, I reminded him it was 2 weeks ago yesterday.  More of the short term memory loss?  I'll just keep making my notes here.

Thanks for your comments.  I know we are getting a growing circle of spouses who truly understand, who are going through the same things, who struggle with the decision to stay or leave, who battle the non-stop rollercoaster ride on a daily basis.  It's just good to know we are not alone.
DW

diabetes statistics

Time to update my diabetes statistics.....

18,000,000 people diagnosed with diabetes
7,000,000 people are undiagnosed
79,000,000 people have prediabetes (?????)
1,900,000 new cases of diabetes diagnosed in adults in 2010
1 in every 400 kids have type 1 diabetes
27% of all people over age 65 have diabetes

in 2007, diabetes contributed to 231,404 deaths.

Complications of diabetes include:
heart disease 68% and stroke 16%
hight blood pressure - 67% of those with diabetes
blindness - 28% of people over 40 with diabetes had diabetic retinopathy, with 5% having severe vision loss
kidney disease - in 2008, 44,378 people with diabetes entered ESRD, with 202,290 living on dialysis
neuropathy - 70% of people with diabetes
amputation - in 2006, 65,700 lower-limb amputations in people with diabetes

People with diabetes ages 60 or older are 2-3 times more likely to report an inability to walk one-quarter of a mile, climb stairs, or do housework, compared with people without diabetes in the same age group.

People with diabetes are twice as likely to have depression.

Every percentage point drom in A1C blood test results (eg from 8.0 to 7.0) can reduce the risk of microvascular complications by 40%.

For every 10 mmHg reduction in systolic blod pressure, the risk for any complication related to diabetes is reduced by 12%

33% of disabled adults live in a household with an annual income of less than $15,000 in 1997.

Improved control of LDL (bad chlesterol) can reduce cardiovascular complications by 20 - 50%

80% of couples with one spouse with diabetes end up in divorce (and it may be higher than that).

Diabetes is the SEVENTH leading cause of death in the United States

Yet if you talk to a diabetic....they will say....."diabetes is not a problem for me, I have it under control."

Hmmmmm........

Now, I realize that you can make statistics say anything you want. Thus I merely pulled numbers off different websites and will allow you to draw your own conclusions.  But my thoughts are that the death rate is probably a whole lot higher than reported. If my hubby has a heart attack, that will be what they put on his death certificate.  They won't put down diabetes as the cause of death.....but that is what has caused his heart disease for sure.

They don't write about the diabetics who are divorced, who live alone, who require homecare visits to attend to their needs.

They don't write about the high rate of depression. How many diabetics commit suicide each year?  So there are a lot of studies that don't get done and statitics probably look better than they would.

If 68% of all diabetics have heart disease, is it then only the 32% that do not have it who are writing their angry comments to me?  LOL!!!

If 70% of all diabetics have neuropathy.....it has to be the 30% that don't have it that are in their 20s, maybe 30s, and think they have no problems with their diabetes?

Or is it denial?  My husband has high blood pressure. He is in that 67%.  He takes medicine to control it.  It is in good control, it is never high, in fact, it tends to run a little low.  So if you ask him if he has high blood pressure, he will say "no".  He is in complete denial about the medicine he takes to control it. He only looks at the bp numbers they read at the doctor's office.  As of late, every time he has told someone that he does not have hbp, I correct him.  In public.  In front of him.  I will no longer tolerate his denial.  He can do it in private....but not in front of me.

But I wonder if other diabetics have the same "denial".  Their A1C is good....so they don't have a glucose problem? Their vision is corrected with laser surgery, glasses, contacts....so they don't have a "vision" problem.  From the diabetics I know (excluding hubby) most of them will tell me things just like this.  I think the biggest one is that they don't have any problems with depression.  They you find out they are taking some type of medication to control that issue.

Statistics are great because they make us be honest.  If 67% of all diabetics have high blood pressure....then most likely your diabetic spouse has it as well!  What these statistice do for me is tell me that I am not alone.  If 18 million people are diagnosed with diabetes and 79 million more have pre-diabetes, and if we assume that 59% of the population is married.....then there are at least 57 million spouses or significant others out there who live with a person who has diabetes.  I am not alone!

So, if 57 million spouses live with this disease and let's round down and say only 50% of their spouses have complications, that's 27.5 million spouses like me.

There are so many other questions.  What is the % of people on dialysis who are divorced?  Is it lower because at that point you stay with them to get the life insurance?

Anyone can write anything. Anyone can do a study and come up with a percentage statistic based on a representative poll of a given population.  What really matters is what we experience in our day-to-day life living with someone who has diabetes.  Knowing that even if they do keep it in control, they will eventually become one of these statistices.  The stats are not going down....they are trending upwards over time.  Which would mean to me that even if a diabetic is in good control, evenually, they are going to have multiple complications.

That's the MBA in me! (Have I confessed that I have an MBA degree?)   I love playing with numbers, reports, graphs.  My problem is that most of the "professionals" who write this stuff have zero experience living with the disease themselves.

But the "wife of a diabetic" in me is very realistic and I know that while he is in denial....I know what his future is.  And because of that, I will continue to work hard to make the time we have together as good as we can make it.  Knowing every moment that I can still chose to leave - and that's how I stay sane through all that happens to him.

DW

Maybe it's for us.....not them

I really started writing this blog because I thought it might help diabetics realize how their disease impacts their spouses and families.  And as a place to vent my own frustrations.  But after all this time, I'm thinking this is more about simply helping spouses survive.

I read somewhere that over 80% of the spouses of diabetics leave them over time.  I wonder if that's a valid statistic.  It seems high to me at times.  But there are days when it wouldn't surprise me if it were 100%!

And maybe that's why not many people are writing about it.  They leave.  They don't have to deal with it.  So they don't write about it.

Seems to me the 20% who stay need some kind of support.  And maybe this is it.

Over the years, I've been to 4 different therapists.  Not because I wanted to change.....but because they left the HMO I belong to and I got "assigned" to a new therapist.  There's an ongoing theme to each one of them.  Well, ok, several themes.  None of them have had any personal experience with diabetes. All of them said that you simply have to grieve the loss of a healthy life, healthy spouse....so thus, this is just like any other loss, so they are perfectly capable of helping me through the process.  And all of them said that it IS my disease.

LOLOL!  Just take a moment and imagine where those conversations went from that point in the discussion!

I will go to my grave contending that this is NOT my disease.  And for any therapist to be so narrow minded as to think it is.....let alone 4 of them agree that it is....tells me there is something horribly wrong with the educational system today!

Oh....the other common factor....all 4 of them were under 30years old. Which made me realize that HMOs hire the young and the cheap.  Anyone with a lick of experience has probably left and set up their own practice.

A couple of years ago, I gave up on therapy.  Completely.  I know the process of grief.  I understand what each of the steps are and how to go through them.  I also know that with age comes experience and wisdom and I can do better on my own than anyone who is under 30 with no experience trying to help me through a moment.

But how pathetic for spouses who really need help.  Who haven't learned how to live with the day-to-day rollercoaster ride of diabetes.  Who still think that when he yells obscenities at you...he really means them.  How sad that women can't get support and leave a realationship.  How brave of those who do.  Yep, I know....I just argued it both ways, huh?

I think that each one of us has to decide what to do. When to stay. When to go.  How long to stay.  Do we stick it out to the very end?  Obviously, after what I've just been through, I'm asking myself that very question all over again.  How many times do we ask it before we go?  Do I want to be here for the next round?  I did not marry into this.  It happened after we were married.  I had no clue. I would not have married him.  But then, he had no clue either.  Do I love him enough to do a single one more dialysis?  At the moment, with the recurring, continuing nightmares....I'm not so sure.

Do I simply allow myself to ask these questions over and over and over.....and that allows me to stay?

I know many diabetics who read my blog think I am absolutely horrible.  But I think they don't understand the sheer, utter needle/blood phobia that I have. If you have that phobia....and you go through what I just went through, it simply leads to all night long nightmares.  You would think therapy would cure that.  But hardly!  It comes from being raised by a nurse practitioner who did not want any of her kids to go into the medical professions.  She truly did a number on all of us.  I think perhaps my brother is the worst.  So it's not something that I think I will ever be able to overcome. I just have learned to live with it. And I did have to leave his room for many of his procedures.  Hubby completely understands.  And I think he truly understands when I say to him that I cannot go through this again.  He is quite sympathetic to the ongoing nightmares I'm having right now.  I'm hoping that the more I write the experiences, the less they will happen.

Had you told me 10 years ago that last night, I would have woke up at 2 am with the image of a dialysis machine tube breaking and blood from my husband spewing across the room.....I would have told you you were beyond insane!  LOL!!!  But that was my nightmare last night.  Which I think is quite justified considering that TWO of the dialysis machines they brought into ICU BROKE in the middle of the treatments!!!

The amazing thing is that I was able to find the strength to be by his side when I needed to be there.  Yes, I was right there each time the machine broke.  I held his hand.  I said soothing things to him.  I told him everything was going to be ok.  I came home at night and cried my heart out.  But God got me through those moments.  And now, while I know that God will get me through my own recovery.....I wonder if any therapist could begin to relate, could offer counseling, could give me any advise.

My thoughts are that you take it slow. Allow yourself to feel everything.  The pain, the fear, the grief, the loneliness....suffer as long as it takes.  But at the same time, set a deadline.  I'm giving myself 4 weeks.  I figure that he was out for 4 weeks, I can take equal time to process what I went through.  But then I'm reminded that for every 4 hour outburst, it takes us 4 days to recover.....so maybe I should extend that deadline to 4 months!  :o)

I'm writing today because I think it's important to point out that if you are seeking counseling, you probably aren't going to find a therapist who has been through this.  And yes, they can help you with the grieving process.  But somehow, I think what I just went through is a bit beyond grief.

So to each of you, may you have a blessed day.  May you find an ounce of sunshine in just one thing this day.  May you have joy for just 1 moment.  Sometimes, that's all we need to get us through to tomorrow.

DW

Answering comments

Newtothis worte:

Wow, I found your blog last night after my P-DH went off on me. Oh yes, I started it. I dared to stop eatting dinner after he scolded the nine year old for mentioning a place we were thinking of taking him and a friend to this weekend for his birthday to his friend before we definately decided to do it. I say, Wow, because after reading your lastest entry -first- I've read every entry starting from 06. I am amazed by how well you have handled your situation. It was your "Gaslight" posting that hit me the hardest. I left a comment on it last night. As I'm sure you can imagine my P-DH is being very nice today. I am just numb. I am disabled. 50 radiation treatments to my neck almost ten years ago left me unable to function fully on a daily basis. For the most part my husband is a wonderful man. We met, fell madly in love and married. I married a man with a Phd who swam five times a week, ate well, didn't snore and was kind. Then I found out a year earlier he was told he was on the verge of being diabetic. He did all he should to avoid it. Once we married that stopped. The first time he had a "swing" I was in our bed (after we had sex) and my three year old had come in to fall asleep in my arms. My husband turned into a mad-man. Yelling, pacing and just plain acting crazy. I truely thought he would kill us before dawn broke. I pled with him to stop and come to bed. Hours later he did and the next morning he chalked it up to being insecure with our quickly marrying and how much he loved me. He had never loved anyone the way he loved me and just didn't know how to handle it. Fast forward three years and the swings still happen and they are due to a blood sugar imbalance. He doesn't belive there is anything to bs and mood swings. Our wonderful doctor treats his pre-diabetic condition the same as a full blown case. The Dr. doesn't believe there is a differnce between the two. According to him the two cause the same exact damage in the end. Address and treat it now is his mantra. Although I don't know if he has address the mood swings to my P-DH he has made comments to him about how my life must be better since he is on medication. The doctor (my GP as well) has told me I can not make him do what he needs to do. That is not my job and trying to make it my job will not work. Not work for my husband, myself nor our marriage. Good advise but it sure doesn't come in very handy when I'm getting berated by a mad-man. You were so right when you wrote 3-4 hours later your DH is back to normal but it takes you 3-4 days. Your blog really is helpful to me. Thank you for keeping at it for the 5 plus years. I admire your humor. Even when you are mad your are kind. You haven't lost yourself. I guess losing myself is my biggest fear. I foolishly thought love brought growth. But, loving a P-DH takes all the warm fuzzies out of love. Love makes forgiveness possible. However, this sitution quite frankly...sucks.

Yes, I have seen the movie "Gaslight". I have even brought this movie up to my husband. To me it perfectly describes what life is like with a person who says things then later denies ever having said the horrible things to the wife he claims to love so much. Your blog is scary. My husband is in the pre-diabetic stage. However, our doctor says pre does as much damage as full blown. He takes the oral medication twice a day. He eats a little better than before but not how he should and I just don't feel like being the food/diet police with him. When he has a mood swing I have asked him to please take a bs reading. He refuses. He doesn't test his blood ever. The mood swings have changed how I feel about him. He gets upset because he doesn't believe I love him and he loves me so much. Maybe he is right. I don't love him like I used to; not blindly and trustfully like before. I'm tired of worrying what will set him off next. And I came into the marriage with two small children. It's hard to explain to someone/anyone how much you can hate the person you dearly love. This is the first time I've expressed this to anyone. I found your blog tonight after yet another round with the beast that inhabits my husband. It takes less and less to upset me these days. I went back to the bedroom...snoring and different bedtime routines have us sleeping in different rooms. I got on my laptop searched "living with a diabetic spouse" and I found you. I started with your lasted postings and then desided to go to the beginning. When you mentioned Gaslight I smiled for the first time since dinner. Thanks. What scares me is this is a 2006 posting. I don't know if I can do this five more years. I am a cancer survior. When the man I married turns into the beast I just want to give up and die. How can someone I love make me think I would be better off dead? He makes me feel like a failure as a mother, a wife and a person in general. He makes me feel like I am incapable of giving and receiving love. At times I think he is right. His mood swings are destroying my heart. Everytime another piece seems to fall away and die. Is it better to have loved and lost than to never have loved at all? At this moment in time I think the hope of love is better than having love kill hope.

Dear “newtothis”
I am glad you found my blog. I hope you will go over to the right hand side and click on the links to other wives blogs. It really is helpful to read about all the varied experiences we have….to find the common threads, to now that we are not alone in all of this.

You brought up a really great point that I think we need more discussion on. The professionals all tell us (spouses) that we cannot fix them. We cannot change them. We cannot make them take care of themselves. But they certainly don’t bother to tell us how to handle/avoid/prevent the diabetic rages, do they?

I love being reminded that they snap out of it 3-4 hours later, but it takes us 3-4 days to get over the horrible ugly things they way to us. For me, personally, it’s the sheer denial that they words were said that hurts the most.

I went through the “Gaslight” phase for 3 – 4 years. I think I survived it because I didn’t know what it was. But once I realized it was just a continuous scene from that movie…..and I started to know that it wasn’t me, I was much better. I knew that he didn’t know what he was saying when he was raging. I knew that he didn’t mean any of it. And yes, the words do hurt….but I know I am a good person. I know I am a terrific wife. I know that I’m not a failure. And I know that no matter what he says, he won’t remember it a few hours later. So now….that I’ve made it past that phase, I can survive his rages and walk away from him, go meet my friends, go run errands, just get out of the house.

And with that comes the realization that yes, he may go into a diabetic coma when I am gone…..but that is not my fault and no one is going to blame me for not being there for him.

Tough choices.

We all have to make them sooner or later.

Either I leave when he goes into a rage…..or I leave the marriage.

I am a good person and I do not deserve to be yelled at or treated with disrespect, so I do have the right to walk out when he is in a rage.

And so do you.

I’m glad my blog helps. There are times when I have been crying my heart out when I wrote something. Other moments I have been so mad I couldn’t see straight. Some posts are filled with love. I hope most are full of common sense. But at the very least, I hope it is an honest recording of what life with a diabetic is like.

FIVE years? And I was worried in my last post about where the week has gone! LOLOL!!!!

Lilly wrote:

was really worried for you that once he started feeling better, he would start resisting all your efforts. I know my hubby would. So sorry! If he continues on the path he seems so determined to take, his kidneys will completely fail . . . but then again, he must know that, and of course you do. You did a very loving thing trying to rehabilitate him at home. But if I were in your shoes, I also would be done! You do not need to be verbally abused/lied to by the man you are trying to help. At this point, it is time to back away, and let him deal with the natural consequences of his own actions. After all, (sadly) you can't save someone if they don't want to be saved. My heart goes out to you . . .

We had a good talk the day after I wrote that blog.  I think he understands.  I will never go through this again. He has to make a choice.  Eat right, take care of himself, test often.....or die.  And I will not go back to the hospital or go to dialysis with him.  I explained to him it is not a matter of love.  It is a matter of survival.  I know my limits.  We are not in our 20s or 30s or 40s.  I have lived long enough that I have the right to say "no" when something is going to have an impact on my health.

I really think he heard it....maybe short term.  Time will tell.

Lynn wrote:

You got me crying...wow...the power of the Internet...people connecting with people they only know via the Internet...I read this aloud to my hubby and he was touched too...we are both cheering you both on...hey, you never know. Hope springs eternal. WE LOVE YOU!

Dear Lynn…..For the first 3 years of my blog….I did this alone. All I got were angry, bitter diabetics who wrote me some of the most horrific things one could ever read. It is so nice to finally have a network started that consists of spouses who truly understand what a diabetic does when they are high/low/out of kilter. While the change in readership is wonderful, I am still so sad that those with diabetes deny that this is who they are, or are afraid to admit this is who they become when they are high or low. They simply still continue to think that we are a group of bitter, angry spouses and that our “job” is to be here on earth to do things for them, not ourselves! (I’m sure this paragraph will grant me comments from some of them! LOL!) It’s just sweet to know that we are not alone.

I wish more diabetics would read this and understant how they really are when they go high and low.

***************

Finally, to my sister – Tom’s wife. We started this. You were the first person who actually supported me rather than putting me down. You even named your blog after me. We have been in this together the longest. We do truly carry each other’s burdens. You, my dear, have every right to complain about his driving. I read your post.    Don’t even give what I have been through a second thought! Because if he continues to drive like that with you as a passenger….you may not live long enough to go through much else!

I truly hope that no one will look at the past 5 weeks of my life and belittle what they are going through. Diabetics, when high or low, are impossible to live with. You can’t reason with them. They won’t accept logic. They are just mad, mad, mad. In the hospital, I had a brigade of nurses to come down on hubby when he attempted that path. But now that we are home, I know it’s constant testing, insulin, food….keeping him from going high or low….a constant, never-ending, time-consuming schedule that will prevent this.

At least I have 3 more months where he cannot drive! :o)

DW

March 4th already???

I think when your spouse is sick, life just passes you by. I can't believe it's the 4th already. Where did my week go? I think the best thing I ever did was to move upstairs and quit sleeping next to him on the sofa. He doesn't like being alone! Next day, he made it upstairs to shower and was ready to move the bed up there....but I told him the guys couldn't come til tomorrow! I figured I at least deserved a few nights of solitude. But I have to say, he has made remarkable progress this week. Going upstairs every day to shower. It's wonderful!

OT actually quit coming in. We made a few modifications like gripper bars in the garage so he can go down the steps and get in the car. Got the wheelchair ramps packed up. Will call Monday for them to come take the wheelchair. We made it to the surgeon's office and while it was absolutely exhausting for both of us, he got there and back in one piece and didn't fall down!

The clinic sent someone out to do labs this week and his creatinine is down to 2.0 36% kidney function! WOW!!! That was such great news!

He has stuck to his diabetic renal diet all week long. I know it is hard for him, but I am adament that I will not go out to eat with him. We can go out 1 time a month and he can have salad or a veggie burger. We have an elderly couple that have promised to take him to an Italian place he loves and I told him plain pasta. So far, he is agreeing. When we went to the surgeon's office, I packed a lunch. We did just fine. But what a huge lifestyle change. I hope he sticks with it.

PT is still coming out to the house. But just once a week now. No clinic PT, the surgeon just wants him to walk, walk, walk.

He is back working from his home office about 1 - 2 hours per day....just the last 3 days. It does wear him out and he then sleeps for 3-4 hours while I go run errands.

So as to my life.....non existant! Yesterday, I cleaned our bedroom, did 4 loads of laundry, dishes, and finished up the taxes. Today I got groceries and put them away, cleaned the kitchen and my studio, got the taxes entered on his computer so he can file them electronically.....and that was all I could muster up the energy to do today. I haven't had a moment to be creative or do much in the way of art for over 5 weeks now. All my art pals are going to disown me if I don't do something quick! LOL!

But I'm happy to say that I think we are truly on the home stretch. While I realize that his blood sugars are still too high - running around 180 - and that if he falls off his diabetic renal diet, that his kidneys will shut down - I am happy to be where we are for the moment. I'll be even happier tomorrow when the bed get's out of the family room and back upstairs!

We have had several long talks. And here's what's bothering me now. He doesn't seem to remember them very long. I need to start keeping notes on his short term memory. I don't know if perhaps he had a mini stroke somewhere in the midst of all this, or something happened, but he just doesn't seem to remember stuff from one moment to the next. I'm not overly concerned, but do want to sort of chart that.

He's getting better at wearing his brace. Horrible at using the sock puller-on thingy. Must think I have the back of a 5 year old. ha ha!

All-in-all.....we are doing great. Hard to believe that 4 short weeks ago I honestly didn't think he would be alive today. Interesting comment by the surgeon.....he said the same thing.....that my hubby literally scared him to death. He said, "as a professional, I have to say certain things when the moment is happening, but I want you to know now that you scared me to death." He has termed him the "xxxx case" (using our surname) and said that they have been referring to us in hospital meetings and do not want this to ever happen again. Already, they have changed policy and an endocrinologist is brought on immediately when a diabetic admits for surgery. I was so happy to hear they made that change. I think it will help many diabetics.

So you all have a job to do. When I get so blame mad at him....just remind me how happy I am to have him alive! LOLOL!!!!

I have repeated to him over and over and over that I will not go through this again. That I will not be at his side at the hospital and that I will not drive him to and from dialysis treatments. I think he gets it. I hope he does.

DW

now that he's well enough.....

he's getting angry. And I'm thinking I'm the one who should be getting angry! LOL!

4 am this morning, he wakes up and goes to the bathroom. I asked him if he should test his glucose. He said he was out of strips?

OK, I know it was a ploy to not have to test. So I got mad and told him that I just really didn't care....but I will NOT go to the hospital with him next time and I will NOT drive him to dialysis.

So you all have to enforce that because we all know it's going to happen!

I got up and went to my own bed upstairs. A week on the sofa is more than my old back can handle! Got up at 6 am and came down and collected all my stuf and moved it and the puppy crate back upstairs. He is going to be on his own at night from here on out.

Here's my logic. He's now recovered enough to argue with me. He doesn't want to test his sugar. I know he is not going to follow the rules. I know he is going to revert back to exactly what he was doing before. So, why did I fight so hard to keep him on the right meds in the hospital? Why didn't I just let all that medical staff continue to make all their mistakes? Dose him at 10% his inuslin, double his beta blockers? I really do not know.

But I won't do it again. He has had his chance and I know where we are headed with this. He's going to refuse to test, refuse to eat right, refuse to eat on a schedule, refuse to exercise. He won't heal right. His back will hurt. He just wants to lay in bed and watch TV and movies 24/7. I'm not going down that hole with him!

Today, I finally went to a genealogy meeting and was gone for 6 hours. Had my sister go home this morning. Left him completely alone. Well, he had his cell phone. He was fine when I got home. So tomorrow I'll meet my art pals for lunch. And be gone again.

And really. If he goes back into the hospital, I truly plan to limit my visits to 2 hours per day.

I know....I talk big, huh? LOL!!!

Starting tomorrow, he is going to talk to all the nurses who call. He can figure out what he is supposed to be doing. I'm turning it all back over to him. Yes, I'm here if he needs help, but this IS his disease and if he's not going to follow the rules, I'm not going to break my back or my spirit trying to force him to do so. After all, he is a grown man.

Lynn wrote:

AMEN SISTER...YOU CAN'T DO IT ALONE and HE HAS TO TAKE RESPONSIBILITY and SHOW THE WILL to fight...That is why I gave up filling my hubby's pills and calling them in several years ago because I thought gosh darn it...if I had to take that many pills I would have to fill them myself and call them in...he HAS to own his condition and that helped us...but who knows in the future, since he was ruled 100% disabled by the VA but he IS fighting for his health, getting to a gym and doing what he can to feel better...your hubby HAS to do the right things...you CAN NOT do it all...you go GIRL...teach art...do art...care, but don't lose your soul in the process. HUGS AND LOVE

so lynn, I'm taking your advice and working to make him responsible for whatever happens to him. I've been by his side 24/7 for the last 4 weeks.....it's time for me to get back to my life now!

DW

Saturday already???

Life is a blurr. It's all so busy, so frantic, so hectic. So incredibly frustrating. He stopped his oxycodine and went to 4 ES Tylenol every 4 hours. Of course, the nurse went ballistic. She called me last night and told ME to google how much he could have? Well, of course, I can find that 4G for an adult in 24 hours is the max.....but what about an adult in kidney failure? Why am I the one doing the googling? She is the RN!!! I finally quit after getting so frustrated with the whole concept of me doing her job!

The clinic nurse called yesterday and gave me the number to call nephrology. I called them and they can't see him til April 1??? I said, do you know why he needs to be seen? She said, it's a regular follow up appointment. I said, "NO!" and explained what he's been through. They had not received any faxes from the hospital, have no idea what is going on.

So I called the hospital case manager. Friday afternoon. Not in. Left a message.

Called the clinic nurse and told her what happened. She will call her liaison at the hospital, but since it's Friday afternoon, she asked me to call her back on Monday to see where we are.

I swear....once again....the burden of tracking and following up is on me.

What if I don't do it? What if we just wait until April 1 to go to nephrology? I'm certain that his kidney function will have decreased enough that he will need dialysis by then.....especially if he continues with the high does of tylenol.

The oxycodine puts him completely out. Unable to wake up to go to the bathroom. But if he can't take tylenol....what else is there? Vicadin, Darvocet....all those,make him sick to his stomach.

I taught art classes last night. I was gone for 6 hours. He failed to write down his glucose, failed to write down how much insulin he gave himself.....just didn't chart anything.

And it got me to thinking.....does he simply want to die? I cannot stay home with him 24/7. I just can't. I need to have contact with the outside world. So I'm teaching an art class one day a week. I know he does not want me to leave. Even if my sister is here. And I had told her to act like she wasn't here so we could see how he would do on his own.

I am really tired of being the only person who seems to want to take care of him. I may give it up. I may just quit. If he does go back into the hosptial, I already know that I will not do what I did this last time. I will not chart. I will not be there 24/7. And I have told him this. He knows that if he goes back into the hospital, I will not be there every step of the way. We got him home...now it is his job to keep himself at home.

Of course, he says he is not going back into the hospital. But I know the moment they tell him he has to go, he will. And honestly, I'm too tired.

So many other things going on that are so much worse than what I am dealing with and that helps me. But so sad. My sister-in-law's mom who is about my age had surgery yesterday to remove multiple brain tumors and they give her very little chance of surviving. My best friend from my childhood had a grandson born 2 days ago and he is on a ventilator and needs a heart operation that has very very little chance of survival. Her dad was in the hospital and walked out. Her mom is ill. They are both in their mid 80s and she is taking care of them. Another childhood friend is going in for surgery to have a recurring tumor removed from her spinal column. So...see, I really don't have it so bad, do I?

I think that when you can look outside what is going on in your own life and figure out that there are others who are much worse off than you are, it give some meaning to what you are doing, some purpose. I also know that no matter what happens here.....I will be ok.

DW

So dang tired!

Bless my sis - she's back helping out. Home Health Care is in place. The nurse can draw labs here and drop them off at the clinic. Pt came today and will be back Friday. Ot is coming tomorrow. They are supposed to schedule a CNA to help bathe him, but I haven't heard back so will call the nurse tomorrow and see where we are on that. Wheelchair here and ramps in place.

Schedule:

7 am, up, toilet, insulin, breakfast
8 am, walk, do exercises, then clean clothes, teeth, etc.
10 am, walk, exercises, sit in chair for 30 min, test glucose
12 noon, same as 10 am, plus lunch
2 pm, same as 10 am
4 pm, same as 10 am
6 pm, same as noon
8 pm, same as 10 am

So, we are exercising, walking, testing glucose, every 2 hours during the day.

At night, I set my alarm and wake him up to go to the bathroom at 11 pm, and 3 am.

I think I may just die. I am so tired. I catch little naps whenever he sleeps. I know we have to dothis in order to get him some strength back. The PT said today that for every day you are in a bed in a hospital, it takes 3 days to build back the muscle lost. So he was in bed for 21 days, this will take us 63 days. Two months of this schedule? Tonight, this moment, I'm not sure I will survive I'm so incredibly tired.

Some of the things you don't think about when something like this happens.....bills. I haven't even looked at one in 3 1/2 weeks. They are simply piling up on his desk. Every day I tell myself that I will start in on them "tomorrow". I think I'll really have to do it tomorrow.

But then I just don't care. Nothing matters except getting him back to some reasonable sense of health.

They cut his humulin to 9 units in the morning and 9 units at night. He is still going low a couple of times a day and stayin high way too much of the time He's just not eating what he used to eat, continuing to lose weight. We had to "train" the home health nurse about his specific type of insulin. In 40 years of nursing, she had never heard of it!!! Needless to say, I'm tired of training nurses! I should be getting paid for this!

I realized there are certain sets/groups of friends that I've forgotten to update on hubby's condition. Now I'm playing catch up with that.

I haven't had a moment to clean the house in the last month. No one's been here to get it dirty, so it's ok. But I know the cobwebs are going to grow soon!

We only have a half bath on the main floor. All that was in it was a toilet and sink. Now, I have added a storage unit over the toilet to store depends and bed pads. I bought a small shelf to put on the side under the sink to hold bathroom stuff, toothpaste, soap, etc. Got an over the door towel holder and hung a paper towel rack. We have a raised toilet seat and I found bars that fit under it that will help him get up and down. So this tiny bathroom has now been modified to serve as his "primary" bathroom. I've put 409, febreeze, windex on top of the shelf over the toilet as cleaning it has become a daily task in order to eliminate smells.

Finding adult wipes....interesting.

I did find some bathroom wet wipes that you heat in a microwave and he can bathe with them. He is just going to have to have a sponge bath tomorrow. It's been almost a week since he had a shower at the hospital.

Truly worried about his kidney function.

Need time to play...but that's going to have to wait.

All I need right now is for 5 feet of snow to fall! LOLOL!!!

He had another hard day. He tried to insert his contacts and I told him not to do it. He scratched his eye. So he's been sleeping most of the day with a patch on is eye. Why on earth does he still refuse to listen to me??? So I took his contacts away and will not give them to him for 48 hours.

My sis and I are watching a movie, trying to unwind and relax. We did get groceries today and another friend brought in a cassarole. I'm praying that I get a few hours of sleep tonight and that tomorrow is better.

DW

the little things no one tells you......

After spinal fusion surgery, you cannot lift, bend, or twist. No big deal. Unless you weigh 250 pounds and cannot reach over your belly to wipe your butt when you have a bowel movement.

A tiny little thing that EVERYONE forgot to mention! So I went online, researched, found a category titled "toilet aids" and have ordered him something that should arrive tomorrow. In the meantime......yes, I am literally wipting his butt. And nearly vomiting every single time I do it. Literally. It's a gag reflex I have had ever since my babies were born, no, if you have it, you just don't get over it. Sort of funny in so many ways, but horrible in so many other ways. Thank you occupational therapy for doing such a fabulous job of failing us in yet one more area. DUH!!!

Amazingly we got in to see his physician at 11 am yesterday. Used the walker to get down the front steps and he nearly fell into me once again. Got over to the clinic and realized that there was no way he was going to stay prone with that walker, so got him a wheelchair. You know...wait inline to check in, go to the 4th floor, wait in line to check in at the nurse's station, then the long (and I do mean long) walk to get to a room.....yep,we used a wheelchair. Neither one of us have ever used a wheelchair before so there were a few bangs getting in and out of the elevator....in and out of the room.....

yes, thank you once again to occupational therapy for not realizing that he could not walk the distance and would probably need a wheelchair!!!

His doc is an older gentleman who I like/hate. He is a generalist who doesn't belive in over-medicating....but he's just not so good at spotting what's going on. He thought hubby was anemic. Said to eat a steak tonight. I said....he's on a diabetic renal diet. Doc says, well, today we need to get him going, so feed him. OK....I will do that. I asked about a wheelchair rental and Doc said that this HMO does not cover that. He wants labs drawn which we do and then we go home.

Stopped and got him a double hamburger sandwich. Red meat! And realize that by now, he is literally so weak there is no way I am going to get him up the front steps. Called a friend who sent her hubby over to the house and we propped ourselves under each arm and got him into the front door.

I'm thinking to myself that there is no way I am going to survive this. My back is already killing me and I simply cannot support his 250 pounds!!!

Get him into bed and all settledand I called our HMO to verify the wheelchair policy. They said all I need is an order from a doc. So I called the doc back and left a message with this information and in about 30 minutes, the DME company called and said one was being delivered in 2 hours. But.....they do not provide wheelchair ramps. Called the company they recommended.....nope, this company does not rent wheelchair ramps.

Have another girlfriend who was in a car wreck and had rented ramps, so I called her to see where she got them from. She said she ended up buying them and is going to bring them down later today to let us use them!!!

During all this, hubby had taken a pain pill and gone into a deep sleep. He woke up at 5:30 and his glucose was down to 74, so he took glucose tabs and I fixed him dinner. I thought he ate quite a bit and complimented him. He asked for another pain pill and went back to sleep. At 9:00 I decided that I just couldn't stay awake any longer and crashed on the sofa.

9:30, my cell phone rings and I groggily answer it. It's the clinic - the labs just came in. He was down to 54 glucose on a blood draw at the clinic. Geez.....and the doc thought it was anemia??? You nearly have to laugh. And of course, because the doc said anemic....I didn't even think "glucose".

The nurse said the doc on call at the adjoining hospital wanted us to cut his insulin in half on the next dose. I'm thinking "NO WAY!!!" But I decided not to say a word. Then she said, "his creatinine is starting to go back up." From 2.4 to 2.6. I nearly laughed out lout. I said, "Well, just a few days ago it was 8.8, so 2.6 isn't all that bad." But she said, "no, but it is going in the wrong direction and we need to stop that."

I agree.

However.....

They had him off 4 of his meds for 3 weeks and we just started them back in. All 4 meds pull on the kidneys. Allopurinol, atenolol, terazosin, and fenofibrate.

He absolutely cannot do wthout those meds. Gout, Blood Pressure, Urin control, and cholesterol.

So what do you do? Suspend them again and risk yet another gout attack where he is in such pain that he is miserable....risk heart problem....have him peeing in his bed???

I really do not know the answer. If he has good kidney function, yet has a heart attack or stroke due to high blood pressure.....

If he is so miserably in pain that even the narcotics do not suppress the gout pain.....

If he, as an adult man, has no control over his bodily functions......

I really do not have the answer for this one.

He was so completely worn out after going to the clinic yesterday that I already know he cannot do this on a daily basis just to get labs done. Guess I will research and see if home health can come here and draw labs. He works for a major corporation which seems to have purchased some "add-on" benefits over the normal HMO packages since we did get the wheelchair covered yesterday. It sure makes it easier when I don't have to go research who provides what care.

But man! What a good lesson learning all of this now so that I know it all for my own aging process.

Of course, I emailed my sis and told her that I may well need her to come back in later this week.

I did wake him up after the call from the nurse. His glucose was 144. He still sat up and ate some pears. We both went right back to sleep.

It's now 4 am and I'm up writing my notes as the puppies woke me up. I am back to sleeping whenever I can. As long as I can. But when the thoughts keep me awake, then I have to write them down in order to let them go.

I pray that anyone who has diabetes will read this journal and keep up with what we are going through.....and realize on a daily basis that my husband is a guy who always, always said, "that will never happen to me."

everyone needs a bitch like me

at their bedside! LOL! My sister told her husband that if she was ever in the hospital, to make sure I was there all the time!

After another knock down drag out verbal brawl with yet another doctor today.....he is home! I promise you that I can give him better care than he was getting in that hospital. I walked in yet again this morning to find him in a soiled bed. I nearly lost it. He has been 5 days without dialysis. His creatinine is down to 2.4. His other labs are all borderline. They were obviously doing absolutely nothing for him whatsoever......and obviously not even "observing" him.

He fell coming up the front steps. Much weaker than he thought. So I called friends and they came and brought one of our adjustable twin beds down to the main floor. We set it up in the family room, which is open to the kitchen. I brought down the puppies crate and I will sleep on the sofa for now. He can practice steps as we have one step up to the main entrance landing. If he falls when we go to the doctors I will have to get help to come in.

I have to start calling at 7 am tomorrow to set up all the necessary appointments. He is talking that he will not do dialysis again, but I know that can change. We have to start all over with his insulin and get him in to see his endocrinologist, his nephrologist. He is back to wearing depends with a chuck across the bed at night.

But you know what.....he is home. No more charting the hospital's every move. No more sleepless nights worrying about what meds they might double dose him on. I left 6 pages of single spaced typed notes with the head nurse.....for just this past week. I told her I really hoped they would use them to make changes that might improve future patient's lives.

I don't think I mentioned the med problem. He and I figured out that they had stopped FOUR of his meds could turkey when his kidneys failed. One was the allopurinol 500 mg per day to control his gout. No wonder he had a gout attack. They stopped his terazosin (sp) which he needs due to prostrate problems....and that controls his urine. So they were charting him as incontinent.....when they stopped the med that he needs to keep him continent. Do you see the sheer stupidity of that? So we had a doc in and he agreed to restart 3 of the 4 meds. One was a beta blocker for his heart. But that doc failed to note that they had put him on a different beta blocker. I'm the only person who realized he was on TWO beta blockers. I asked the night nurse to hold it....and he said, "no, if a doctor wrote the order, we give it to him". I was wide awake all night long. When the morning nurse brought it in again, I asked her to hold it til I spoke to a doc. She went out, called the doc, who immediately discontinued it. So you know I was right once again....and they had made another mistake. I think it was huge. Double dosing a patient's beta blocker could have had is BP dropping so low he might not have revived.

needless to say, I am thrilled we are home, beyond happy that this part of our life is behind us, hoping that he will regain enough strength to do stairs...but realizng this may be our new interior decor plan! LOL!

I'm beyond exhausted and going to try to get him ready for bed next. I won't survive the night if he doesn't put that cpap machine on now!!!

dW

this infernal medical system

GEEZ! GEEZ! GEEZ!

the Nephrologist decided to give him fluid last night via IV. No staff to assist him to urinal. They tried to cath his penis, it blew up, his call button wouldn't work, so he got up out of bed. The bed alarm went off and the nurse came in. He had THREE bed changes last night.

They tried to get the staples out of his back and the didn't have the right tools An MD finally got them out today and hubby said it felt like he had a million bee stings going into his back all at once.

He is having another gout flare up in his left knee and they went ahead and started him on a prednisone burst which will increase his glucose levels. So, he and I were talking, trying to figure out why this is such a problem. I said, have they been giving you allopurinol because I haven't heard them say that. He said, no.

So we got his RN in here and she looked through his chart and he has not had allopurinol or terazosin for at least the last 4 days since he transferred to this unit.

Are they trying to kill the man? No allopurinol? Absolutely why his is having a gout attack. I cannot believe the complete moronic idiots working in this hospital.....which is supposed to be "specialized" care?????

The neprhrologist was in today and he said, "I am going to write an order that if his creatinine goes below 3.0, to pull the dialysis port tomorrow." Great news!

So a nurse comes in and tells me that there's an order to put a perma port in him tomorrow if his creatinine doesn't go below 3.0. It's been 3.3 for the last 2 days. I said, "ABSOLUTELY NOT!!!" No one discussed that with us and it will not happen.

I think I'll be spending the night tonight. I don't want him in a saturated bed again......and I certainly do not want a perma port put in a guy who has not had dialysis in 5 days.

Complete total utter quacks running this joint? ONE MORE and I will get administration involved because this is just a little bit too much as far as I'm concerned. It's just a darn good thing that I got a good night's sleep last night and have the energy to get mad!

So he is sleeping now, left knee all propped up, heating pad under it (that I brought in from home), battling a gout attack that was brought on by the hospital not giving him the medicines he is supposed to have. And yes, they have had his list from day 1.

It is no wonder people die.

I HAVE to get him home. I just have to.

DW - beyond frustrated

this amazing journey

So much happens so fast. He was transferred to the LTACF and he loves it there. They removed the fentanyl patch. Today....he was much better. Day 3 with no dialysis. May not need it any more. Kidney function back up to 15%. Great progress.

He has a gout infection going in his left knee. His glucose dropped to 34 today. But they reacted timely and treated appropriately. Nutrition on board. Endocrinology present. He is still quite weak, but he is going to come home ok.

We talked a bit today. He apologized for his behavior the other day. We talked a little about the future. About how to handle this the next time, and with his poor kidney function, we all know there will be a next time. He's just been given a reprieve for now. He had visitors today and I think that did him a world of good.

He is so weak. Can barely lift himself up off the bed. c.diff still going. Hoping they can get that under control soon. He got up and walked to the bathroom today using a walker. Huge progress!

I'm exhausted tonight, going to bed. But it's such a good "tired" feeling! I really believe he's going to make it this time.

DW