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

and after all that....

I went in this morning and he was in a fighting, ranting, raging mood!!! Wow! Completely took me by surprise. He point blank lied to the surgeon, who decided to write a discharge home order! The nurses got the order and in 2 minutes, the surgeon was back in the room with 2 nurses, a social worker and a case manager! I guess he told the surgeon that he took a shower yesterday. The nurse said, yes, but his wife was in there trying to hold him up, bath him....it took her over an hour. He was light-headed and had to get right back to bed.

He told the surgeon he had eaten breakfast. He failed to tell him he ate 2 teaspoons of oatmeal, 4 teaspoons of yogurt, and didn't even attempt to drink any of the liquids on his tray.

I think everyone learned something today! That this guy is good at presenting a wonderful image. Mind you, he did not "lie". He did take a shower. He did eat breakfast.

So after an hour, we all agreed that he is going to a long term acute care facility. The doctor said that he will not go until his nutrition iv is done, and that will not be done until he eats and drinks at least half of each item on his tray.

I was beside myself. He cannot get himself up out of bed. He cannot hit a urinal. He can barely get up from a chair if he gets to it. But he had a surgeon convinced that he could go home?????

Then we had another 1 hour discussion about WHERE he was going to go. He didn't want to stay downtown. He wanted to go closer to home. Problem is, his HMO does not have a residential facility that has dialysis on site. We would have to put him in an ambulance, take him to dialysis, ambulance him back to the facility and each step we would have a co-pay for. He argued and argued about each facility and he would not believe me that they did not have dialysis. The he said, well I will go to this place and mentioned the place close to our home that does dialysis. I said, "sweetie, that place does not offer residential care. You need to go somewhere where they can help you get to the point where you can walk, do stairs, take your own shower...." I had done the research, but he did not believe me.

We finally all agreed that he was going to the long term acute care facility in the hospital where he is and everyone left.

He slept. And after an hour, I asked him if he wanted to get up and sit in the chair for a bit. He said yes, so I asked him to call the nurse. He said that he had been getting up by himself all night long and didn't need the nurse. Now tell me, why did I ever buy into that lie? But I did. I actually stood there and made him get up on his own, use the walker, get to the chair. He was literally trembling as he tried to lift himself up off the bed. Sitting in the chair, I asked him if he wanted to eat something else. No, he didn't. I asked him how he was going to get nutrition into him if he didn't eat? He said I ate enough, I ate half a bowl of oatmeal and all my yogurt. I said, No, you ate 2 teaspoons of oatmeal and 4 teaspoons of yogurt. Oh my gosh, he got so mad at me. He stood up in a complete rage and glared at me with pure hatred. I just stood frozen in my spot. I didn't even realize that my sister went out to the desk and got a nurse.

The nurse came in (love her to pieces!) and started doing a number on him for being out of bed without calling. That's when I realized he had point blank lied to me. I left the room and went down to the lounge. She came down a little bit later. She's a good negotiator. She said that he was in a rage because he felt like everyone was treating him like a child. She told him it was because he was acting like one. She basically sent me home for the day. Told me to take his phone and turn mine off. Which I did. She really read him the riot act. Told him that he would not get out of his bed without calling the nurse. She is going to put an alarm on his bed tonight. She told him that he would get up to his chair 3 times a day for meals. That he would eat half of everything on his tray and that she was putting a calorie count in place. She told him that he will walk 3 times a day and sit in his chair for at least 30 minutes each time he is up.

I came home and my sis and I have been watching movies and eating chocolate this afternoon. Just what I needed. It is so sad that I cannot call to see how he is doing. But I understand that he needs this. He needs to find out just how much I am worth to him. And if I walk in there tomorrow and he gets pissy, I am supposed to leave again.

So yesterday was true love. Today is tough love. And I totally understand that they go hand in hand. He cannot say things to me like he did today. He cannot yell at me. He cannot treat me with anything but respect. He has to do that for everyone involved with him. And I understand that his anger is not about me, he is simply directing it towards me. He needs to vent and I hope they get a therapist in there so he has someone to vent to. And I know that he is angry about going to a long term acute care facility. A couple of people have used the term "nursing home".....and he is NOT going to be happy over there. It's not new, modern looking. But literaly, it is the only place in this area that offers on-site dialysis. We just don't have options.

What a day. I'm going back to watching stupid chick flicks so I don't have to think. I need a day off. Tomorrow has to be better. It simply cannot be worse.

DW

Love

I went back to the hospital at 12:30 am after 2 hours of sleep.

I sat by his bed and held his hand while the suppositories kicked in.

I sat by his bed during 4 1/2 hours of dialysis so that when he looked up, he saw my smile, and he wasn't disoriented.

I laid my head on the bedrail and held his hand while he dozed, back in his room.

I got into the shower with him and bathed him while he sat on a chair tethered to his iv pole.

I kissed his forehead and came home at 5 pm after holding his hand for more than 16 hours.

That, is love.

De

in the pits of dispair.....

I got in there at 6:30 am. And found him in a saturated bed. I do not know if it was a burst ice bag.....or urine. I don't know how long he had been there. He was upset. He had pressed the call button and they said they would come in. He didn't know how long that had been. My sister went out to the desk and 3 nurses were in there immediatly. God only knows what she said to them. I was mad. I yelled. Then I said nothing.

When the surgeon came in, I took him quietly aside and told him exactly how I had found my husband. He looked right into my eyes and said, "what did you say?" and I repeated myself in a very quiet, calm voice and added....I'm quite concerned about the safety of his incisions.

If I could draw a cartoon of heads rolling - I have a whole new vision. That surgeon started shouting orders faster than I could think! It was just unreal. I have never seen so many people in one hospital room ever. They pur waterproof dressings and sealed every single incision on hubby. The brought in a special air bed for better comfort. The brought in 2 urinals, new ice bags, special hand cleaner and gloves for me as I'm allergic to the standard ones. I mean in 20 minutes everything I have requested this past week was in place plus more!

After they all left, I sat there in the chair next to him, holding his hand, my head resting on the bedrail, and cried my heart out. I simply do not understand how any hostpital today can leave a grown man in that condition. Complete, utter, sorrow and prayer that he will not remember that.

When they did the nurses report, the night nurse said he had been incontinent. I looked at her and I said where is his urinal? She looked around and saw that it was out of his reach. I said, "you chart that as well. He is NOT incontinent, he was incapable of reaching his urinal and that is YOUR fault."

By 11 am, he was more than exhausted and I was beyond drained. I remember praying to God to give me the strength to make it through one more moment, to dry my eyes, and to turn me back into his great cheerleader. Somehow, I managed to live through this day.

He was still pumping too much gunk out of his stomach this morning. The surgeon actually yelled that there was not going to be any discharge until his ileus was completely healed. I know hospitals are gung ho on counting days and yesterday, they were saying that he would be transfered to a Long Term Acute Care Hospital. But that didn't happen. I think the LACH is where they tell you dialysis is permanent.

Bless the surgeon's heart I know how medical staff are required to be positive and hopeful, and can't tell you the truth. The surgeon looked right at him and said, "You have the look of someone who's kidneys have died. You have that ashen look."

Finality. Past tense. Kidneys are dead. Dialysis is permanent. I can start to wrap my head around this. While the nephrologist comes in and still says, "well, we'll see what the creatinine levels are tomorrow, but it will probably be a dialysis day". I can start to know that it will now be every other day. I think the LACH is where they tell you that it's permanent. Where they say the words "End Stage Renal Disease", Where you get counseling. Where you make life altering decisions.

But he just has to get well before he goes there.

They clamped off the NG tube about 11 am and started with apple juice. Then beef broth. He has managed to keep them down all day long....but still absolutely no output. I will see how distended his stomach is in the morning. It's possible that after 12 days NPO that his body will simply absorb the first few sips. Only time will tell. He savored every sip. He was beyond adorable. I cannot wrap my head around the concept of not eating for 12 days. Can you? He is probably down about 30 pounds. If he can sit in the shower tomorrow, I will be thrilled. OK, I can't wrap my head around no shower in 12 days either!

My sis thought he was doing much better today. I am doing much worse tonight. I think "dispair" is the word that comes to mind. His speech is so slurred. He is definitely having problems with memory, time, events. And I know I am exhausted, running on fumes tonight.

On the bright side, my art pals filled my refrigerator today with quick easy grab-n-go type food. We are set for the next few days and can skip the grocery store. I love my friends - so amazing!

DW

That dang roller coaster...

And it's not even the sugar one!! But related. Yesterday, they tried dialysis, nd he clotted. Wanted to send him to get a tunneled port, but he had been on blood thinners. So they did the port this morning, and he's in dialysis now.

How do you stand it? How do you sit and watch blood coming out and going back in? Can he do this? I know he's going to be mad at me when we get home. I know he has always said he would never do dialysis. I know, I know, I know. But today, that all goes on the backl burner as I play cheerleader once again to get him motivated to get up and walk so he can come home.

I got 12 1/2 hours ofnsleep last night. He called and woke me up. The night nurse took him off ice chips and he was miserable. By the time I got here, he was off getting the new port in. I met up with him in dialysis. After I had a conversation with the floor nurse. Explained to her that they can do anythingnthey want, but when he is this miserable, they HAVE to do something. She got him ice chips stat!!!

Why do I have to do these battles??? Why can't they use an ounce of common sense?

He has c.diff. And I have to wash my hands all the time, put on gown and gloves and do it over if I move. My hands have had a reaction to the soap and my arms are literally burning from the tips of my fingers up to my elbows. They are trying to find me different soap and gloves today. At least they are trying.

Today is another day of tears. He is improving. Truly. But I just hurt so bad for the pain he is in. I ache for the choices we have to make in the days to come. He is begging for food and he is still npo on a stomach pump, still has an ileum, stomach is distending again. And Theresa always the threat of uremia. His WBC continutemto climb. No bowel movement in about 36 hours. It simpl wears on the soul. Probably hardest is the fact that I have to stay chin up around him. So I continue to function 1 step at a time.

Dw

my therapy

Coming home and writing all my thoughts and fears here. So that he will never know. My personal, heartfelt journal of the process of grief, hope, loss, faith and so much more.

Thank you for your comments. It's ineresting to me how God is guiding me through this process, one step at a time. I could not make it without my faith. I would be lost without my trust in Him. I ask Him daily to grab my hand and keep me afloat and somehow, at the end of the day, here I am!

The gave him a respite today - no dialysis. We spoke to the nephrologist quite a long time. We agreed to just take this day by day. So it breaks my heart that originally, he was supposed to be discharged tomorrow. I don't think we are close to that just yet. I will be in at 7 am to see what his creatinine is and I will know from the numbers. If it is above 6.8, then he will have dialysis. If it's at 6.7, then they will look at other labs and make the call.

The doc promised to talk to both of us before they put in a different port.

Hubby is still hallucinating and we've decided that's from the fentanyl. Pretty strong stuff. He agreed it's better to stay on it and hallucinate, than to deal with the pain.

NG tube/pump is a huge problem. 7 days with no nutrition. 2 days on iv nutrition. Starting to concern me. They did an xray tonight and I left before the results came in. When he went to xray, he passed out. The hospital has a "rapid response" and no one called for that, so heads were rolling. If they have to do surgery on his stomach - I doubt he would survive. I'll leave that problem for tomorrow. But he is pumping out way too much stuff from his stomach - horrible green bile. Again, I want to get in there early to meet with the doctors once again.

He hasn't even had his back brace on yet because his stomach is so distended. Something simply isn't working inside. And he knows it. The more he wakes up, the more he realizes whats going on, the more pain he feels, the more he hits the pain pump which increases the hallucinations.

With the cdiff bacteria going on, they now think he may have a yeast infection in his mouth. I tell you, I just don't know what else can go on with the poor guy.

I am shutting down and I know enough to tell my sister. I'm closing off to the rest of the world. And I think this is completely natural I have to insulate myself to protect my heart so that I can be strong for him. Sad, I'm the kind of person that if you are sympathetic around me, then I will break down and cry. And that has to wait until later. I have to go in there and be strong for him. I have to do battle, because he can't. I have to research and study so I know what questions to ask.....and today I asked away!

I don't think he will ever agree to a dialysis diet. I just don't see him restricting his intake that much. I honestly don't see him going to sit 3 days a week for 5 days. I had always assumed we would do home dialysis.....but now that I've truly had it all explained to me....I don't think he would want to do that either. I'm sure we will figure it out when we have too.

My phone call tree has turned into an email tree, so today, I just sat and held his hand. He said it made him feel better. Every time he opened his eyes, I was right there. He is just so worn out. So completely exhausted. So I fear what tomorrow might bring if they have him do another dialysis treatment.

I'm too tired to think about what else went on today. Going to try and get some sleep. Here's the problem with that. I wish I could take a pill and get a good nights sleep. But I can't in the event the hospital calls and I have to get back down there.

DW

Day 4 dialysis

Whew. I truly wonder if I will suvive this. I'm researching like crazy, trying to absorb as much as I can. Planning to see if the hospital has any education on dialysis they can offer me. I need help!

Yesterday, after his 4th dialysis in 4 days, I realized that all of his hallucinations are most likely from the toxins being replaced in his brain's blood supply. He said I was wearing a plastic bag over my head and that there were plastic bags floating in the sky. Then he said there was glitter on the ceiling and that it was blue (not white accousitcal tiles!)

Just before that, he was completely beside himself saying that he just wanted to die. He didn't want to continue dialysis. He just wanted to die. He wanted to pull everything out of him. He was crying. I tried my best to be his cheerleader. Telling him that he had 3 little grandchildren that needed their grandpa. Telling him that if he died, it would surely kill his mother, so he had to stay alive so I didn't have to tell her anything. I pulled out all the stops and he finally settled down. But I was so drained, I just thought I might die myself.

I know that I also have to ask for therapy to come in today for him. Not sure he will understand or comprehend anything, but I have to ask.

On the upside, he is out of ICU and into a private room. Still under infectious control. No status on the c.diff yet. I think he has to be on iv flagyl for 4 days...but need to ask that question again today. Just way too much going on for me to remember all of it.

They were talking yesterday about putting a permanent port in for dialysis. I need to have it written in his orders that we need to discuss this first, since he has always said that he would not do dialysis.....and since he wants to stop and die after each treatment.

I have to tell you that it simply breaks my heart. The most devasting thing on earth is to have the person you love, holding your hand, saying that he wants to die. And saying it over and over in such a terrible terrific moaning voice. He truly just wanted to die.

Once we got him into his room last night, he started telling me to leave. He wanted me to take everything and move out of the house and leave while I could. Of course, I made "light" of it and told him that I hadn't found the right "box under a bridge" so I had to stay put. :o)

He has absolutely no idea what I have been through the last 8 days. I know my readers know. But he doesn't. The utter heartbreak. Crying streaming tears in sheer agony to God to give me strength to make it through just one more hour of the literal smell of death coming up through his body. Knowing that having worked in the medical field in the past, I am fully aware of what that smell is.

I thought I knew what the roller coaster ride was. But this is so much more than I have ever experienced with him. One moment, bracing for death, the next, celebrating such a tiny victory as him squeezing my fingers. Going from him being blind to having his vision back. Listening to him moaning that he just wants to die - to talking about where we are going on our next vacation. It seems to go from the lowest low to a rather positive high, just to sink so eternally low once again. It is aging me. Being a constant cheerleader is aging me. I have had my moments when I had to flee his room and find a quiet place to cry my tears of heartache and dispair.....wipe my eyes and go back in with my "happy face" shining bright. I just have to be a rock in front of him. But this rock has it's moments when it shatters to nothing but grains of sand and then has to rebuild into another rock. It's so hard.

I'm making adjustments. I'm crying at night when I'm home alone in our bedroom. The process of crying seems to wear me out and allow me to sleep so soundly. So that's good. Today, I need to get all my notes into one place, get them in order, edit them, review them. I've asked my sister (bless her soul, she has been with me 24/7 since this started) to start taking notes as well. Just because I find I'm getting confused as to what day he did/said what.

Yesterday he walked 8 steps and then started to lose his vision. No one knows why. Before that, when he sat up in a chair, he started to go blind again. Of course, he panics. I would, too! But when he panics, his heart rate shoots up and everything just goes out of kelter. His BP is not dropping, so no one know what's going on with his vision.

Thank you for all of your comments. While I'm not reposting them and making my comments back, just know that your support means the world to me. I know that each of my readers either has experienced what we are going through, or knows that they may one day soon go through this journey. There is absolutely no way to prepare for this. If you know the steps in the grief process, I do think that eliminates fome of the surprise of feelings that happen. When I get mad at a nurse....I can stop and ask myself if it's just the "anger" phase, or did the nurse really do something that justified my anger. Things like that help. I've been able to understand shock so much better - I just want to walk away from everything. And it seems that every single day, I am at different levels of the grief process on different issues. And just being able to pinpoint where I am truly helps. So if you haven't been to a grief training class - find one.

The other thing I have realized this week is that you cannot counsel others when you give them bad news. When I'm in the "anger" phase....that's just not a good time for me to inform anyone else that he's on dialysis. Because they are going to be in denial. And if they deny his condition when I'm angry about it.....well you can just imagine!

So I have picked one person from each "group" as my contact. My sister for my family. His brother for his family. One guy from his office. One artist from my pals. Those 4 people get a phone call or an email (usually email) from me each day. I have asked everyone else in each group to contact that person for updates. I had taken over 100 phone calls from friends and family wanting updates on him. This system has truly helped. And while his parents are livid that they have to go to his brother for updates, it has eliminated me having to listen to them cry and carry on - something I just could not do right now. My husband will have to come to understand that later on. I also realize that this "system" is going to need to be solidified in the near future as even talking to 4 people on a daily basis can be quite draining. And my sister can't stay with me forever. She needs to go home and take care of her husband. But for the moment, this has helped me immensely.

Time to get up and get dressed and get to the hospital. Posting my thoughts here truly helps!

DW

uremia

It's amazing how calm I am when I KNOW what it is! No, the idiot doctors did not tell me, but I simply entered all the things that are going on and it's uremia. And he's probably had it since Tuesday. Drowsy, sleepy, difficult to arouse them from sleep, inability to think clearly, memary impaired, disoriented, confused, slurred speech, no speach, twitches, shaking.

That or dialysis disequillibrium: nausea, emesis, blurred vision, muscular twitching, disorientation, tremors......

Either way, I will ask the doctors today because I just do so much better having an answer. And I understand their unwillingness to make a diagnosis of either of these in ICU. They did back-to-back dialysis, less than 12 hours apart. Pulled off 6 liters of fluid, in addition to the 2800cc that was pumped from his stomach yesterday.

I have absolutely no idea what today will bring. I could not sleep last night so I was up researching all night long. My adrenaline has kicked in again. I'll be fine! Gotta love those adrenaline rushes!

My girlfriends came over and brought comfort food. They actually googled it. Mac & Cheese and mashed potatoes. Is that a hoot? Choc chip cookies, chicken, corn....they did me good, with enough to keep in comfort for several days.

I finally realized yesterday....or finally "got it" that my friends NEED to help. They so desparately want to do something, so starting today, I will ask. I have someone bringing their puppy over for playtime with our puppies this week. Someone taking care of getting rid of the snow. Planning a craft evening with art pals.

So uremia. Pretty serious, huh? I know. I know he can bound back from it. I know he can die from it. I know he may be on permanent dialysis - which he has said repeatedly that he will not do. I know that if he doesn't, he can come home and be dead in a few days, weeks or months. I did more research last night than I've done in ages, but I am so much better prepared. Knowing the process of ESRD....that they go into a coma, not quite so bad as anything he's been through this week.

Today, my goal is to just get through today. Pretty simple. Keeps me from thinking about the future. Keeps me from thinking about the past. So many people all around the world are praying for him. I've made his brother the contact for his parents so I don't have to talk to them - huge relief! I have picked one of his employees for that group, and my sister that is here with me is taking care of the rest of the family updates

I have an aunt who is a critical care surgery RN and she called me last night and went over everything. Said that they might put him on a Bipap machine to force oxygen into him. I so appreciate her letting me know. Again, education is so much better than surprises!

I still believe he can turn it all around. He could get out of ICU even today! As impossible as that sounds, he's done it in the past. When I had the least hope....he turned things completely around.

Finally, I know how difficult this is for those who fear they will be going through it in the near/distant future. But on the other hand, I hope there are those reading my journal that think this will never happen to them. You are the person my husband was up until about 5 years ago He was in denial the first 25 years of his disease. This would NEVER happen to HIM.

But it did. And it is. Again, I don't think it has anything to do with how well you take care of yourself. It has more to do with how old you are, the natural aging process of the body, how long the disease has been in your system, what additional issues you have.....it just all adds up. And while nutrition, exercise and good glucose control may prolong it.....chances are it will still happen.

Today's battle will be this. The neurosurgeon claims he needs high levels of protien and no carbs in order to get his incisions to heal.
Endocrinology says he needs 45 carbs per meal for his diabetes.
Dialysis says he needs no protien.

I think I need to schedule a joint meeting with all 3 entities this week. That should be a fun one! :o)

DW

12 hours of sleep

You would think t would help. But I have cried so much today. I came in and he is now on infectious care. I have to gown up to see him.
2nd dialysis today
Heartburn
Nauseated
Vomiting in bed all over himself
NG tube back in and they have pumped out 2800cc - yes, you read that right- in the last 4 hours.
Internal bleeding
Oxygen back up to 6 ltr
Colostomy and catheter
I have had to leave a few times just to compose myself. Know that I need to walk away and go home, but that scares me.

I love him so much

I walked in and he put his arm up and I said, what do you need? He whispered, hold me. I wrapped both arms around his arm and said again, what do you need? He whispered, I just want you to hold me. So I sat for 1 1/2 hours just holding his hand.

My heart is breaking.

I'm going home to watch the hallmark channel and sob my heart out. My girlfriends are bringing comfort food. I pray tomorrow is better. I know this guy and have seen him turn things around before so I haven't given up hope yet

Dw

Complete shut down

His kidneys have stopped. He is back in "mini" surgery having a port put in for dialysis. He has always said that he would never agree to dialysis, but I talked to him yesterday and got him to agree. I told him that if he refuses it in the hospital, he will never walk out alive. I got the nephrologist to agree to only put in a temporary port - good for one week at most.

I had to sign the consent form. That's how out of it he is. Me. I had to sign consent for my husband to go on dialysis - which we both consider to be life support - and we both have DNRs.

But I also know that if he refused, he will go from here to a nursing home and never get out. I want him home so he can make all the decisions.

And I have completely shut down. Nothing matters. Tomorrow doesn't count. Hope doesn't count. Thinking about yesterday isn't possible. I feel like I am in a shell and the shell only exists for this moment only. So I know it's a form of shock and I'm very aware of what I'm going through and I'm simply allowing myself to take the steps I need to get from this one minute to this one minute.

He has a wonderful team of nurses today. I love the endocrinologist here and am so pleased with the nephrologist. The critical care doctor is avoiding me like the plague, and I'm certainly ok with that! My sis is here by my side making sure that I eat, take my pills, walk. I think she wants me to nominate her for saint-hood! She is taking care of everything at the house.

I don't know when they will do the dialysis, I'm hoping farily soon after they get the port in. OK, so I was explaining to someone else, he has had a port in his upper right chest since Monday. He has 3 IV ports in his right arm and 1 in his left arm. They still draw blood directly from his left arm for labs and still inject his insulin directly into his stomach with needles. I just don't know how much more one human body can take.....and now dialysis.

If it goes well and he has no adverse reactions, I will go home and sleep in as long as I want tomorrow before coming back in here.

I have been sitting here just wondering what diabetics think. I have heard so many say, "I take good care of myself. Nothing will happen to me. I'm compliant. I'll never let it get that bad." And I know my husband said that all through his 20s and 30s. But as a person ages and other parts of the body start to fail.....as years and years of having this disease start to take their toll on the body....how can anyone say "it won't happen to me."? My heart aches for all the diabetics who are going to be in my husband's spot and have no clue what is coming at them or how hard it will hit them. But my heart weeps for all the spouses that will go through this.

My brother-in-law was healthy as could be and died in his sleep of a heart attack at the age of 55. We should all be that lucky.

No one should suffer like my husband is suffering this week.

DW

Beyond awful

One of these days I will assemble all my notes. Right now they are on my laptop, ipad, iphone and in emails. I'll put together a timeline. But just know this has been my absolute worst nightmare.

Example of just one conversation this afternoon. Hubby is in ICU. He cannot see. His kidneys are functiong at 13%. And the critical care MD is arguing with me about his insulin. I swear! I did not back down. I finally said, "you sound like you are upset with me." he said, "I feel like I am being attacked" I said, "I'm no where near attacking you - I'm trying to get you to understand why you should not switch him from Humulin R U500 to novolog. But you do what you have to do. His endocrinologist said that if anyone wanted to switch him off Humulin, they were to call her." and I gave him her number.

Then I pulled out my gigantic spread sheet and showed him hubby's past tracking of labs. You cannot fathom the change in this doctor. I think he realized that I know what I'm talking about. He called this hospitals endocrinologist who just now left the room telling me they were NOT going to take him off his Humulin!!!

So why did the critical care MD ever even have the argument with me? Why didn't he simply listen to my concerns, then call the endo?

And that is what my entire week has been like.

To top it all off, I woke up to blood in my urine this morning! Can you even believe that? I'm sure I have a kidney infection from sitting in surgery waiting all week long. Fortunately, my HMO has a clinic about 5 blocks from here and while it's not where I go, my doctor is amazing and she called an RX there and didn't make me go see her (an hour from here). I'm flushing my system with diet 7 up and cranberry juice and am already doing so much better. But did I need this? NO!!!

As you can see, I am stressed out and my body is starting to show it. When I told my doctor everything that was going on, she said, "and all you have is blood in your urine???" That made me laugh!

Hubby is running a temp of 103.3 now. So I will stay with him awhile longer. Been an awfully long day and I know I need to get some rest, but I'm hoping to meet with the hospital nephrologist because his kidney functions are so low.

I keep telling myself it can't get any worse.....yet it does.

DW

And the nightmare begins.....

Those who read me, know this is my place to vent. So that when I'm with hubby, I can be supportive and encouraging. So I have to vent about this hospital and staff, because in a couple hours, I will be there, and then I have to be a cheerleader!

My sister is with me. Thank God! But on the drive home last night she said, "I could never be like you." I said, what do you mean? She said, "you just coo and coddle him, you say all these really sweet things to him to make him feel better. I'd be like 'get over it' if that was my husband laying in bed!"

Just had to laugh at her! But it might let you know that when I'm in front of others, I'm really a good wife. This is my place to vent and get it out of my system so no one else hears it.

But that hospital might just hear it today!

He was in recovery for 3 hours. I knew that wasn't good. He finally got to his room and when they let me in to see him - he couldn't stand. He has no feeling in his left leg from the knee down. He can move his foot. However, he says he's not moving it that it's involuntary movements. The nurse said it is swelling from the surgery and just temporary. But let me tell you, that man was scared to death.

I actually had to excuse myself for a moment and go out into the hall and take several deep breaths. What do you do when your husband is so scared, and you are, too, but you have to be brave in front of him?

I went back in and immediately just started repeating to him over and over that it was just swelling and that it would go away, but that it might take a week or two. I rubbed his hands and his arm, rubbed his forehead, cooed sweet nothings to him until he finally started to settle down about an hour later.

He was having trouble breathing. He would doze off and simply not breathe. I don't know why they did not put him in ICU for the night, but they didn't. The floor nurse was just horrible. I mean truly. No eye contact. No personality at all. I handed her his bottle of humulin R-U500 and she said, yes, we are handling this. I said, what is his glucose? She didn't know! So she got a meter and took it. It was 320. Now, mind you, he had not had anything to eat in the past 24 hours. So I asked what insulin they had given him and she said 5 cc Novulin at 5 pm. I'm sure the look I gave her was horrified....but then, remember, she made no eye contact with me - so she didn't see it. Even hubby told her that was way too low. She kept saying it was the same as Humulin R.

I got home around midnight and crashed. Then woke straight up in bed at 3:30 am realizing that the hospital staff was reading it just as humulin r, not adding the U500 to the end of it. So I printed out his RX, printed out the description of the drug, made up a huge print sign with all his RXs to take and tape to his wall, then called to check in on him at 5:30 am. A different nurse answered (thank goodness!) and said that his heart rate has been elevetated - around 125 to 150 all night long. So he is struggling. I asked what his glucose was and she said she took it at 2 am and it was 320 again. So I took the time to explain to her that I thought there had been a mistake in his meds. I explained the difference between regular and U500. She looked in his chart and said that the doctor had reduced his dose from 32 to 16 units in the morning and from 20 to 10 units at night. I said, "why would you reduce it if his glucose is 320?" She said she did not know.

I asked when the doctors would make their rounds - she did not know that. So I asked if when I come in today, could I speak with the doctor on call? Of course, she said that I can. So I will.

I looked up the patient advocacy number for this hospital and will call it if I don't get positive results with the doctor. Hubby cannot stay at 320. He just can't! And I'm certain no one at this hospital understands humulin R-U500. On my list of meds, I've printed his endo's name and phone number along with his PCPs contact information. I'm taking my own scotch tape! LOL!!!

Since I sort of want him alive and in working order, I will take on the role of advocate once again. Much as I do not want to, I will do it. I absolutely hate that this burden has been put on me. Doesn't have a thing to do with how much I truly love and adore this man. This is NOT something that I signed up for. But will willingly take on the role in order to help him through this.

Honesly, I do not know how he will survive tomorrows operation. It absolutely killed me to watch him last night. He was in so much pain, so scared about not feeling his left leg, and a bit in a delima due to his high glucose - which they obviously allowed to remain high all night long.

At midnight, I had to leave. I was on the verge of collapse and to make matters worse - our weather is not cooperating whatsoever. I have never divulged where we live, but needless to say, most of the US is being consumed by a winter blizzard of which we are not exempt. Driving in such inclimate weather added an unneeded stress factor and we are facing it again this morning. It's only an hour to the hospital on a good day. Go figure that the worst of it hits when he has surgery scheduled! Well, OK, I'm hoping the worst is over!

I am keeping notes, but just realized that I need to start keeping even better notes as he may well not survive tomorrow's surgery, based on how they are handling his insulin. How truly, utterly, completely sad is it that a family member knows more about his insulin than anyone on the hospital staff can figure out?

I am so not prepared for today, but I will manage no matter what. I'm going in on 3 1/2 hours of sleep - knowing that will have me on edge. But I cannot sleep at this point and who know what time I will need to be there in the morning because surgery starts at 8:30 am.

May you never ever have to go through this with your loved ones - diabetic or not.

DW

I'm pissed!

He's not out of surgery yet, but I am pissed, so going to write about it and see if I can't get over it!

His surgeon came out about an hour ago. Said this was the hardest case he had ever done. Hubby is morbidly obese (259 lbs). Has put on 40 pounds since bypass surgery a year ago. I think the surgeon was blaming me. I wish I could re-do that conversation. I'd make it clear that it's not MY fault! Hubby fixes most of his own meals as he never likes whatever it is that I cook. He will go to Burger King whenever he wants. He sneaks candy in his truck all the time. I'm NOT his mother - I can't force him to diet or alter what he eats. So I'm mad at the surgeon for even suggesting that "I" have to get him to lose weight!

He wants to put him on a protien, no carb diet when he leaves here. I told him that the endo says hubby has to have 45 carbs per meal. Can't do that on a no carb diet.

So surgeon said what about gastric bypass surgery?

Now, how can you eat 45 carbs per meal when you can only have an ounce or 2 of food at a meal after that surgery?

Sometimes I just wonder about the medical world? I understand that they are all so specialized that they don't know what one specialty needs from aonther.

But don't put that burden on me!

It's NOT MY DISEASE!!!!!

They couldn't get to the L3 - he is too fat. Said his veins would not move. I'm thinking it's atrphy from diabetes. NOT fat. But you know, I'm not a doctor, so what do I know? I mean, they guy has had diabetes for 30 years and here's what we've been told:

His heart problems are all due to poor genetics
His back problems are all due to poor genetics
His gout is due to his Scottish ancestry

Do you understand why I'm about ready to scream my head off? No one, and I mean NO ONE is even considering that ALL of this just might be a result of 30 years of poor management of diabetes!!!

DUH!!!

OK, I will quit my ranting. The neurosurgeon is done, but they now have to put him back together again.

Oh, they nicked his femor vein in his left leg going in, stitched it up, but have to be aware of possible blood clots and he has to constantly exercise/move his feet. Ya think he's going to do that???

One can only wonder what's going to happen on Wednesday when they do the second part of this.

So they only fused L4-L5. I wonder if that's enough to relieve any of his pain.

The neurosurgeon said that he didn't gain 40 pounds this past year by not exercising. I'm thinking, yes, you don't move at all, you simply sit in a chair or lay in bed, you can easily gain 40 pounds in a year by simply eating the same way you ate the past year.

Will there ever be a physician who looks at the whole person?

I sort of doubt it!

DW

The night before surgery...

And all thru the house, not a creature is stirring...

Because I think we are all worried and apprehensive. Still doing pretty good not allowing myself to worry and fret. But wondering if it's possible.

Lilly, your comment was right on. Do we take a proactive role - do I check the quantity of humulin he gets and the time... Or do I let the hospital staff make their mistakes and do whatever they need to correct it. I was proactive with his heart surgery. I think I might not be with this one...but I won't know until it happens and I know that.

Keeping myself busy so I am worn out - which means I am sleeping great. He is not sleeping at all, so I know he's worrying about surgery.

24 hours and we will know how the first one went.

Dw

Would you donate a kidney?

Lilly did. Check out her story.

Hubby and I have already talked about this. My body seems to be allergic to any and all drugs. So I probably couldn't. He won't let his kids. They are probably both pre-diabetic. But I think Lilly's post is really good. Who out there looks at possible complications for the donor?

I once knew a gal who went skiing and when she got to the base of the run, had completely stopped, she lost her balance and fell over into a big rock. She had a kidney that was so damaged it had to be removed. What if she had already donated her other kidney to someone she loved?

I think we just don't think about the ramifications of what we do. We don't plan for the future. Lilly said her hubby was ready to quit dialysis. My hubby has said he will never start dialysis. He says it's a form of life support and he is against that in any form. I see his point. But I wonder.

I wonder if his kidneys will survive 2 operations 2 days apart, each surgery lasting a minimum of 6 hours. I think the word "minimum" scares me. No one has mentioned what the maximum might be.

He is on humulin. We had so many problems with his open heart surgery getting his humulin to him in a timely manner. Hospitals just don't understand how it works. It is 5 times concentrated a normal insulin dose. So you take 1/5th the amount. We have to take his personal supply in and the pharmacy keeps it and fills the needle and then dispenses it. He's supposed to have it at 8:30 am with a meal. Last time - he'd go til noon without it being delivered. And yes, I'm the one sitting there calling the nurses asking where it is - he's going to be out of it the first few days.

But surgery with a diabetic has it's own complications. Hospitals just don't seem to care. They don't understand nutrition, the importance of eating on time, the importance of injections on a schedule. They have their own protocols and who are we to insert a different medication with a different protocol?

So I was up all night long thinking about this. Do I make sure I' there at 8:30 am every morning to start the calls of "where is the humulin"? Do I make certain they give him humulin and not hospital insulin? Do I check the needle to see if it's 5 units, not 5 cc?

I think that this time, I'm going to simply put him in the hands of the hospital staff and whatever happens - happens. I cannot be there 24/7. I can't be the hospital's "quality control". But "letting go" is nearly impossible to do when you care for someone so much. On the other hand, I know I'll wear myself out if I play "inspector".

I understand that from Monday at 10 am until Wed at probably 10 pm - I am going to be a total wreck! I understand that I have absolutely no idea how I am going to get through this. The good thing is that most of the time, he will be unconscious or drugged. Do you think they will give me some drugs? I almost think that if I ask for them, they will!

I understand that anything can go wrong. But I am also praying that everything goes perfectly correct.

Yesterday, I decided I was wearing myself out trying to stay positive. So I'm giving myself 24 hours to be negative! Starting tomorrow, I will go back to being positive and refuse to allow the worry, nagging, what-if thoughts to enter my head.

But maybe 24 hours of worry is good - just in case I need to be prepared.

We are planning a quiet weekend - before the "storm" (of surgery) on Monday!

I so appreciate all your prayers and good thoughts. This blog is about the journey, the road traveled, how to survive as the wife of a diabetic. I so often say that it is "his" disease, not mine. And it is. But the road I travel has been altered and impacted by his disease. Hopefully, this surgery will get us back on the path to healthy living. :o)

DW

A1c at 8.0

He simply can't get it down. He's gaining weight. I truly hope this doesn't prevent surgery. He went through all the labs and pre-ops this last week. So much to do. His liver function test was really poor. Life goes on. If one thing is good, 10 others are bad or vice versa.

I didn't realize that cortisone wears off in phases. I just thought when he said it had worn off - it was done. But yesterday, he explained that there are stages and right now, he is getting no relief whatsover from his pain. He can barely move. I so hope this surgery helps.

On Thursday, his endocrinologist called and said they wanted to see him. He was supposed to go in last September and skipped the visit. I just refuse to nag him on stuff like this, no matter how important I think it is. This is HIS disease. So I heard him arguing that there was no reason for him to go in before his operations, but then he agreet to go tomorrow. When he hung up, he was furious.

He said he had never heard of this doctor, had never seen her, had never been to that clinic. Of course, he's been there 3 times since his bypass surgery. And I quietly reminded him of his vists and he said, "I never went there!"

It hit me.....they had switched him to Humulin just before surgery and he was crashing low all the time. Of course he doesn't remember going in there. I got out receipts with the doctor's name on it and the location of the clinic. Sort of hard to argue with that! But he truly didn't remember. And what gets me is that it didn't phase him that he didn't remember. He doesn't connect diabetes and sugar lows to lack of memory.

Anyway, we are now going to endo tomorrow. I swear, if they want to change his dose due to his high A1c just before surgery, I may just go off the deep end. I am NOT going to live through another series of lows this next week and that is precicely what happens every time they increase it.

So, what do I do? Do I start nagging him whenever he misses scheduling with a specialist? Then he gets mad and yells at me. Is this my job? REALLY???? And obviously, if I don't nag him, he doesn't go. The problem is that specialists are outside referrals to his HMO....and his HMO doesn't remind him to go and they don't call until months later when someone in their office realizes he hasn't been in.

Hugh sigh!

There's half of me that says - just let him crash. Don't even worry about it. As long as he is taking the dose the doctor tells him to take.....it's not my problem.

And the other half of me says - heck no! When he crashes, he yells and screams and tells me to leave. And then he doesn't even remember the horrible things he said. So if I want a peaceful life, then I HAVE to make sure he tests and that he stays pretty level.

In all honestly, I'd rather have him high than low. I know neither is good for him, but life is better when he's high than when he's low.

Lilly, surgery isn't for another week yet. And 2 more office visits to "pass" before we really know he can have this done for certain.

In the meantime, I'm burying myself in art projects this week. Hoping to pass the time quickly and have a little fun in the process!

DW

It was a wonderful weekend!

My sister is too funny. Our brother is having surgery by a surgeon close to her, so he is going to be spending his recovery time with her. Surgery is on 1/20. She called me Friday morning and said, can I come down for the weekend? I need to get away!

Of course I love having her here and we played all weekend. We had the pizza party with our other friends and it was just a hoot.

But don't for one second get me wrong. I have plenty of moments where I get so mad because living with a diabetic is NOT the life I ever asked for, wanted, envisioned, or deserve. I'm just going through my own denial phase and ignoring the fact.

No, I think I've simply turned it all over to him. Once again, it's his disease, not mine. My life goes on. And I'm going to do the best that I can to enjoy it and live it. He can live in his own depression and I will fight every second to stay away from it.

And at least for this last weekend, it worked.

I did have a little pep talk with him and informed him that he could not go to the bedroom until 9 pm each night. And that he had to be social, whether he liked it or not.

He did good! LOL!!!

His sugars are running way too high. About 220 when he wakes up. He did labs this morning. Cannot even fathom what the A1c will come in at. It's not in yet. I just checked and some of the others are back. Triglicerides are at 669. Alt is 84 - liver problems now? He has an appt with his primary on Thurs, will know more then.

DW

Pre-op depression?

Funny that I can diagnose him better than he can! I have no doubt that he's in pre-op depression right now. Ugh! Two more weeks of this? I wish he could be a little more like me. I've chosen to be positive about everything. And if I'm wrong, we'll deal with it when we have to. He's chosen the direct opposite path and is thinking nothing is worth anything.

How on earth does he expect me to stay positive? I am really trying hard today to overcome his depression and it's just not all that easy. He sighs all the time. Has this mopey look about himself. Doesn't even try to get my jokes. (Now, that hurts! LOLOL!!!)

I know it's just something that he has to go through....but I'm sorry to say that the rest of us have to go through it with him.

So today, I buried myself in my art! I've been hired by a local store to teach classes one night a week - something to force me out into the art world. They seem to be more than willing to work around my schedule with him, so I took them up on their offer to teach!

I've planned a pizza party tomorrow night with friends who have little girls that he adores. And my sis is coming down for the weekend with her husband. So I'm hoping this will force him out of his depression.

On the other hand - his birthday is next week.....yeah, I understand "that" depression! LOLOL!!!

I've made up my mind - it's going to be a great weekend! Hope yours is too!

DW

Kidney stints???

There are multiple surgeons preparing for hubby's operations. One of them called to talk to him about his appendix incision from 30 years ago. It might be in the way of where they want to put kidney stints.

KIDNEY STINTS?????

No one mentioned that!

So I did my google research and actually, I think they might be a good thing for this kind of surgery. Protection in the event there is blockage.

But don't you love it how "information" arrives? via a phone call? about a 30 year old incision?

That surgeon called back today and said after looking at more xrays and records, he's decided the incision isn't going to be in the way.

And I am pleased that they are wanting to take steps to protect his kidneys. They only function at 22% right now. We need to preserve them as long as possible.

Tomorrow he goes to get fitted for his back brace. Another 1 hour drive there and an hour back.

Yesterday, we drove and hour to the hospital for him to bank his 3rd pint of blood. His hematocrit was too low (by 1 point) so he called the surgeon who said they were delighted he had manaaged to bank 2 pints and to not worry about the 3rd pint. So a 2 hour drive for nothing. But you have to do these things to get ready.

And I wonder why I'm tired all the time? :o)

I'm so grateful to have my sisters. I call when I get down. I called today. I do think it's wearing me out. I'm fighting depression. Fighting the unknown, the "what-if's". Trying hard to stay positive for him. She gave me a 20 minute pep talk and I was fine after that. We decided the "key" is one of 2 things;

1. Give in to the feelings, eat chocolate, watch a movie, fall asleep and wake up ready to go

or

2. Take on a project. Get busy. Do something. Be active. Ignore the sadness and the fears. Put it all in God's hands.

Today, I picked # 2 and was so busy in a half hour that I forgot about his problems!

Now, if I can just remember that the next time.....

DW

Passed a milepost!

Went to his cardiologists today and he passed with flying colors. Had a new EKG and no problems. What a sigh of relief!!!

He also "graduated" from wound care. We don't have to go back. The incision on his ankle where they took the vein out for bypass surgery has finally healed! Another big yeah!

Love it when there's good news!

Plus, he got a parking spot right up front at the clinic! Gotta make you smile! LOL!

DW

Nesting

They say that pregnant women "nest" right before they deliver. I remember doing that. Cleaning up a storm, getting our "nest" ready for the new little birdie.

I realized this week that I'm "nesting". I'm cleaning, sorting, and organizing, getting ready for his surgery and 8 months of recovery. Funny - I didn't know that's what I was doing - but it hit me like a lightening bold. Little things. I put a bench inside the front door, so he can sit and rest. I put a wheeled student type chair right inside his office door. I put another one in the bathroom. Today, I hung shelves in the utility room and brought the tool we use the most in from the garage and put them on the shelves.

I think I'm getting ready for limited mobility in the next 8 months. And while I don't have any way of knowing what it will be like, I think somehow, instinctively, I was getting ready. Now that it hit me what I'm doing - it's sort of funny.

He is really apprehensive about the operations. So we have been talking a lot. His cortisone has worn completley off and he is pretty much in pain full time. I really hope this works. I understand that if it doesn't, the only solution is another surgery.

I also noticed that I am retreating into my protective shell. turning down invitiations. Not inviting people over. Not going to meetings. My way of coping? So I invited another couple to dinner and movies this weekend. I agreed to go to a meeting with a group I belong to. Going to try to accept more invitations. Sometimes, I think I'm just not able to deal with everything and I start to shut down, then something wakes me up and I'm just fine.

Tomorrow we visit his cardiologist. He gets and EKG and an echocardiogram. Sure hope they come back ok!

DW

Surviving December

Sure sounds like a great movie title! LOL!!! But we made it! Janaury 3 and we have survived it all! Yeah us! LOL!!!

Lilly, I want to apologize to you. I did say Lynn and meant Lilly and I now have the link to your blog over on the side. So there are 4 of us posting the honest truth about what it's like being married to a diabetic. I find the similarities and the differences all so interesting. I'm still amazed at the number of diabetics who are at some stage of denial as to what is really going on in their bodies. I think my hubby is relying on me more and more to tell him what is going on. He doesn't seem to actually notice declines in body functions and I seem to be inately alert to the slightest change. And then my sister pops in and is overwhelmed by his decline and I realize just how much I miss.

This week is the "parkinsons" type shakes. He can no longer cut his own food. And that is sad. I'm sure it is from the neuropathy. When there are no nerves, how can you feel that you have a fork and knife in your hands? He has lost most of his grip due to carpel tunnel. But again, I believe that's tied to neuropathy as well.

I noticed just today that even simple things like filling his pill box are becoming difficult Hard to hit the bin with the pill when you are shaking as bad as he does Seems to be worse when he is tired, but getting to be pretty bad all of the time.

Did our second blood bank visit today. Things are moving right along. I think the big hurdle is getting a release from this cardiologist to do the spinal fusion. I woke up today with such a complete peace about the whole process Not worried any longer. Just putting it all into God's hands and going to make the best of whatever the outcome is.

Here's hoping we all have a positive year. By supporting each other, we can make the road a little bit easier to travel!

DW

New "wife of diabetic" blogger!

Lynn wrote:

Hope that all goes well with your husband and surgery. My husband is also in a lot of pain with spinal stenosis. However, because of his slow healing, he cannot find anyone who will even consider doing surgery. He has been told surgery may make things even worse because of all his other health problems. I finally "took the leap" and started my own blog today. Not sure how to let other people know, as I have been reading the other blogs you are following. I am still new to this! Here is my link: http://type1d.blogspot.com/ Yes, my husband is a Type 1, but so many of your challenges are so similar to mine. Again, thanks for having the courage to tell it like it is in your blog. You have truly helped, just by letting me know I am not alone in this craziness.

I've added Lynn's blog link over on the right. Lynn, welcome to this tiny group of women who are writing the day-to-day life of what goes on. We are slowly growing. I think it's so healthful to me to simply write what I'm feeling at the moment. It's a great outlet of stress. But more than anything - I'm documenting his progres (or lack of it). Doesn't matter if it's type 1 or 2, we are in this together.

Lynn, it sounds like your hubby is about a year or so behind the process of where my hubby was. He's been through PT and done the cortisone injections. Nothing worked. Here's my thoughts...the nerve endings are dying off. They do not heal. High sugar causes blood vessels to constrict and die off, why wouldn't it also cause the spinal column to constrict? And because this is caused by diabetis, not injury, then it can't be "fixed" without surgery. Just my opinon. Good luck!

Oh, and I have no idea how to market a blog like this. Mine seems to get picked up by the wierdest feeds!


Now, to Tom's wife: Thank you for blogging! I was truly worried. I used to have a mantra when I worked. I would sit at my desk and repeat over and over...IJAJ....IJAJ....IJAJ....it's just a job....it's just a job. Got me through many days!

Hubby's back is so bad he decided we couldn't go to the in-laws this year. I got lucky for once! Horrible people. If they ever read this blog, they deserve to know just how bad they are! I don't envy you at all. Your in-laws sound exactly like mine! Are you sure we're not related???

I have decided that the best gift anyone can give me is bubble bath! Think about it. If I use it, it forces me to spend time soaking in a tub. Which means that I'm not doing something else. I'm resting. Maybe we should all send each other bubble bath. OK - let's save on postage...everyone go out and buy their own bubble bath! LOL!

Hubby has been off work for 2 weeks and we have been resting and relaxing. We turned down every single holiday invite except for 1. It's been a very stress free month. I just don't think he could have handled anything this year. We spent today with his kids and grandkids. Bittersweet. The new grandson (8 months old now) has been diagnosed with epilepsy. Up to 100 mini seizures per day. On new meds and today....no seizures. The parents (hubby's son and wife) look beat - completely drained. So heart wrenching for me as my youngest son, now age 26, has had seizures his entire life. Sometimes diabetes seems like nothing.

DW

Peace, oh! sweet peace!

But I know it's the calm before the storm! He is off work til the end of the year and there is nothing on our calendar. We don't celebrate Christmas much. We will spend the 24th with his kids and grandkids, but it will be a quiet day.

He finally quit gorting on everything in site and is now back to eating salads and fairly healthy foods.

He has agreed to consider water exercise. I'm going to check out local classes.

He said that starting next week, we will do minor exercises to help build up his strength pre-op.

We went to wound care today and the incision on his ankle from his open heart surgery last March is finally starting to close up.

Our first pre-op visit is 12/27. We have 2-3 appointment every week for the next 5 weeks.


********

As a side note - I am worried about Wife of a Diabetic 2.....I sure hope everything is ok and that you are just too busy to post.


*********

Lynn wrote:

Welll we found out his back is messed up bad...will learn more Monday... no wonder he has been in such pain AND limited.
also he was set up with HEALTH BUDDIES via the VA and will be posting his blood readings daily and in communication often so we hope this gets him in a better daily routine for keeping on top of things...hangin' in, girlfriend?

I truly hope his back isn't as bad as what my hubby is facing. We are almost at 2 years of no mobility now. It is no fun, that's for sure. My hubby has an extremely high pain threshold. I think what he's going through would kill me. I'm really hoping this surgery will help. I know we have 8 months of recovery before we will really know anything and I'm going to have to keep him motivated for those 8 months so that he stays on track and heals. Ah! The fun we have! LOL!

DW

What a day!

Some days he just scares me to death!

He wanted to go to Wild Buffalo Wings for lunch

Then to Costoc

He came home and at 3 pm, he ate a whole bag of potato chips

At 4 pm, he ate my leftovers from WBW

At 6 pm, he fixed himself THREE chicken salad sandwiches

HOW can he consume so much? He's going to weigh 400 pounds before surgery and the doctor told he he has to lose 50 pounds.

I'm stuffed just watching him eat.

Wait...maybe this is a good thing? LOL!

Seriously - it scares me how much food he eats.


And a bag of peanut M&Ms in the last 2 days as well.

He's been in a horrible mood since noon today. Just horrible. I'm exhausted. My sis is here, so I do have my sanity!


DW

On again, odd again, on again....

LOL!!! Not sure where we last left off, but we are now back to having back surgery and not going away for the holidays. I should write down the decision of the day, huh? And this today after a new cortisone injection just yesterday. He actually called the surgeons office this afternoon. The or room has been booked and everything is on schedule. I wouldn't do it myself, but then I'm not in pain.

I worry about it being too soon after his heart surgery

I worry that his kidneys will fail with 2 surgeries 2 days apart

I worry that he may be worse off than he is now

It has been 6 full months since he last had any labs done.

He said he will get them done in January.

I am praying for a quiet remainder of the year

My sis is here for. Couple of weeks so he is on his best behavior

And she is giving me much needed reprieve from our daily life

It's all good-- like the quiet before the storm

Dw

Diabetes and back pain

Lynn, this is sort of for you based on your last comment.

And it's just my opinion, nothing professional.

We know that nerve endings die off in the feet and fingers first in a diabetic

But it makes sense to me that nerve endings are dying off inside....as well as outside.

Intestines - causing diahrrea, other complications

Kidneys - kidney failure

lungs - respiratory problems

and what else is dying off? Probably not just nerve endings. Is oxygen getting to all the parts of the body? Feet? Hands, etc.

We know that blood vessels die off due to high glucose. And if he's going low all the time, there's a matching "high" that's doing damage.

If vertebrae collapse, the spine curves.

And spinal column narrowing....has to be the same thing as blood veins narrowing...

When nerve endings die off, there's pain for 2 years.

The sciatia nerve...dying off? Does it? Can it? I'm sure it can.

Horrible, terrifying disease.

But life does go on. No matter what. Hubby's grandma died this week, one of my best friends from gradeschool died...and life goes on.

Hubby's cortisone injection wore off. In the blink of an eye. One day he was doing fine, the next day taking 2 dilaudid at a time.

One day he wasn't going to have back surgery, next day he's thinking about it.

One day, we were going to go away for the holidays, next day we aren't.

Next cortisone injection is Dec 8.

I think everything will change again - once he feels a little better.

But I have to survive between now and then!

DW

Life doesn't stop

just because your husband has diabetes. But there are days when I wish I could just put it on pause!

Hubby's 91 year old grandma died Thanksgiving morning. She lives 1000 miles away.
His dad went into the hospital on Monday with HPB and glucose at 400 - he was passing out all the time.
He went home Thursday pm on new meds.
Tuesday, hubby went to his oldest granddaughter's school for grandparent's day. I had a meeting so couldn't go with him. In attendance was his ex wife, her husband, his son, his daugher-in-law, and his DILs parents.
The DILs mother made the "arrangements" and "forgot" to reserve a spot for my husband...he had to sit in the back of the auditorium.
In the classroom, granddaughter had made cards for everyone but him.

Yes, he has absolutely horrible children who have absolutely no respect for him. What are they teaching their own children?
Bottom line is that he came home and cried. He NEVER cries. This hurt him beyond belief.

Being this upset, with this much going on in such a short time is not good for a diabetic. A roller coaster of emotions.

So my family came to the rescue! 2 of my sisters came with their husbands, drove 2 hours each to get here, and we took him out to lunch yesterday. Everyone doted over him and told him how much they appreciated him and his help with all their computers It was a true thanksgiving. And he really loved every moment of it.

I think we may have to adopt different grandchildren. I doubt he ever goes back to the school. We'll see what he does for the holiday. This is the year he had open heart surgery and they have come to visit him 3 times....they live less than an hour away. It's just a good thing they are not my own kids. LOL!!! Actually, my son treats him much better than his own kids do

Needless to say, it's been one of those weeks. We need a break! Hopefully next week will be calm!

DW

Busy bee here!

Lynn wrote:

My hubby's readings are 179 AND higher...it is seldom under 200...but he is really watching the eating and cut way down on the chewing tobacco so he is making an effort...don't know what to make of your hubby's behavior but it sounds like he is wanting to make good choices but doesn't know what to do at this point.

What's his A1c? My hubby's A1c is 8.2 which is way too high. And, of course, he doesn't watch what he eats at all. Fried chicken wings tonight doused with Peanut M&Ms. He doesn't smoke or chew....about the only "good" habit he has! OK, he doesn't drink either. I know that he really wants to make good choices, but he gives in to what he'd rather do every single day. I've simply given up with him!

I was gone to a meeting almost all day long. He went to bed at 7 pm. I can tell the cortisone has almost completley worn off. He's either sitting on the sofa (recliner on the end) or in bed (adjustable bed). He is getting absolutely no exercise and it's because of his pain - he can barely function.

Between my art and genealogy projects, I am busier than I've ever been. Made the decision that life goes on. Have another genealogy meeting tomorrow, then an art day on Tuesday, a day off on Wednesday, and then driving a couple hours to see mom on Thanksgiving. Major powerpoint presentation due 12/5, so must find the time to put together a video for it...lots of fun things going on right now.

Life isgood.

But in the back of my mind...there's always that non-stop worry about him.

:o)

DW

Prevent diabetes poster child

One of my art pals was here this week. She hadn't seen hubby in quite some time. And in that interim, she has been tested as "pre" diabetic. She said, "You husband is my poster child for what I don't want to be."

I thought that was amazing. At least he is doing some good by being so bad. She has watched him deteriorate over the last 4 years. I was so impressed with her eating. Low to no carbs. No sugar. No white flour. No soda. She is taking all the right steps to keep from becoming diabetic. I congratulated her and I really think she will beat this.

But who knew I was married to a poster child...of sorts?

DW

Something's going on....and I can't figure out what

He is running a low grade temp

The wound on his ankle is slowly healing. 8 months....gives new meaning to the word "slow".

His eyelids are extremely swollen and he has an overall puffiness to him

He doesn't eat anything for 2 or 3 days and then he eats every 2 hours for 2 or 3 days

He isn't sleeping at nights. He is staying in bed most of the day.

If I ask him if he's ok, he says "yes"

He decided not to have the back surgery. Now he's thinking he will have it. It's scheduled for 1/31 and 2/2.

The cortisone shot is starting to wear off. Next one is scheduled for 12/8

He doesn't want to make even the simplest decisions...like what to have for dinner

He was going to go visit his parents for the last 2 weeks of December, now he's not going. (I was going to go with him)

His sugars are running high again...179 fasting.

He is refusing to go to the doctor or get new labs done. He has not had any labs done since June and that was only a partial set, did not include A1c.


I feel like I'm back on that merry-go-round-roller-coaster.

Sorta want to throw up!

DW

Puffing up again

One of my friends came to visit yesterday. She hadn't seen hubby in 3 months. She said, "he's really puffing up, isn't he?"

Interesting because I had told him just the day before that he looked really swollen.

Kidney failure again? Well, we won't know until he starts vomiting again. Such a game of wait and see.

In the meantime, life is good. We are doing less and less, going out less, entertaining less, socializing less.

but I'm ok with that. It's winter. Time to hibernate. LOL!

He added netflix to every TV in the house. We can watch movies from anywhere. At least he is easily entertained!

No sugar lows to speak of. Things are very quiet....very normal. I love it!

A lull in the merry-go-round-roller-coaster.

I couldn't ask for anything better.

DW

When he starts yelling at traffic

I've started asking if he needs to eat. I think he's going low. Why? Because we have plenty of times when we go out and he drives and he can handle the traffic, it's not problem. But other trips, when I think traffic is normal, he starts making cracks and comments about the idiot drivers.

So I've been trying to track this. And if we stop and get a quick bite, or just a cold diet soda...he seems to do much better. If we stop and go in somewhere, sit down and eat a bite, even if it's small....suddenly the traffic is no problem.....all those idiot drivers just disappeared!

Something to think about. The lower the sugar, the more idiots are on the road? Pretty funny! But there's a definite pattern with hubby.

DW

No dialysis

We had an interesting conversation at lunch today. Hubby informed me that he will refuse dialysis when the time comes. He considers it "life support". He has a DNR. So I can sort of understand where he is coming from.

He was quite depressed. Says he is not going to have the back surgery. Is going to just live with the pain. I have been doing a lot of research and if he doesn't do the surgery, I think he will soon be a hunched over man. I suppose it can't hurt a lot to wait a few months, but I do worry about what will happen in the interim. I think it's the cortisone injection doing the talking right now. He had the injection 2 weeks ago and this one took, so he's getting a lot of relief from his pain. When it wears of, it may be a different story.

But I can also understand him not wanting to go through a major surgery just 8 months after open heart surgery. He is still trying to get the incision on his leg to heal. We went to wound care again today and they are not happy with the lack of progress, so have changed the protocal a 3rd time and we return in 2 weeks.

Hubby made the comment that he wished all his money wasn't going for medical care and I have to agree. Co-pay for office visits runs about $500 per month, prescriptions are running around $250 per month. That doesn't count larger co-pays for non-formulary items. I'm ever so grateful that we have the money now, but I wonder how long. And can he ever retire with these amounts of medical expenses? Probably not.

The idea of not doing dialysis scares me to death as I will then have to watch him die slowly.

And I wonder if by then the medical profession will have the power to force him to do something he doesn't want to do.

Such a horrible disease.

DW

Lynn wrote:
Thanks for enlightening me about why a diabetic rants...and how they probably can't control it. It is so great lately for us but I do think the less stressful retired lifestyle along with the antidepressants have brought about this change, because the years of being in a pressure cooker lifestyle, with kids in the house and his teaching and coaching,and then being an administrator, then even after retiring from that taking on co-running a diner...all the pressure of stress through the years created these moments of ranting and like you said, it didn't matter who got in his path, they heard it and saw it. Thanks for clarifying this...I sometimes got tired of making excuses for him, but this makes more sense. WOW! THIS IS HUGE! My hubby readings are always high, but perhaps he does dip down and that is when he blows up. thanks...this blogging about living with diabetes is a sanity saver. HUGS AND LOVE!

I think it's important to realize that highs can be the same as lows. There's an imbalance in the glucose levels. When my hubby goes high, he is very irritated and edgy. Everything annoys him. He doesn't seem to rant and rave like he does in a low, but he simply can't tolerate anything.

The other important thing is to understand how highs and lows work together to form an A1c. My hubby's A1C runs around 6.2. Yet we know that he has one low after another. In order for the A1c to be that high, he HAS to have a lot of highs to average out to be 6.2, when he has so many lows. Think of it as a ball. If a ball hits the floor and bounces 6' high, the middle is 3'. In order to keep the ball at 3', right at the middle, then every time it hits the floor (zero) it has to bounce to 6' high (the high). If it bounces to zero, then 2', then zero, then 2', then zero, then 2', the middle would only be 1 foot.

Diabetes is the very same thing. If the average is 6.2 and he has 10 lows....he had to have 10 highs in order to maintain that average.

We have done enough recordings that we're pretty certain hubby has his highs while he is sleeping. And that's probably just as bad. Well, while I don't haveto put up with his moods, highs are busy eating up his veins and nerve endings...high sugar does a lot of damage.

Again, I'm not a medical professional, I just write my own personal experiences. And close observation, notes, charts, tracking glucose levels has led us and his physicians to some rather good conculsions. I have to say that he has been pretty level since his open heart surgery. But we are also regulating his eating, exercise, activities more than he ever did in the past. He's much more regular about when he takes his meds. Is he compliant? Probably not by any medical standards. But much more than he ever was in the past.

But also, I have learned how to recognize the lows and know to make him take a glucose tablet. I know when he needs to eat. I know when to proclaim that I'm starving and I have to eat immediately! If I eat, he does, and then his sugar will come back up.

And I will say that life is much more pleasant when glucose is regulated. Don't get me wrong, we still have numerous outbursts. But I'm more prepared for them, know better how to handle them, and know that I can simply get in the car and drive away when I need to. :o)

DW