Friday, September 28, 2007

Creatine was 2.7, now 2.5

He is such a liar! The other day, he told me the test was at 2.4. Now, with the retest, he says it's at 2.5 today, but the last test was 2.7. I really don't know what to believe!

I ran the GFR on 2.7 and that puts his kidneys at a 26% function. Now THAT I believe!

I can't deal with any of this today...I'm off to teach workshops. And as long as I ignore this bit of news...I can have some fun...I hope!

I almost think I can handle the's all the lies that I CANNOT stand!

Thursday, September 27, 2007

A lovely day!

Finally, I am on vacation!!! I took off this morning and went to visit the ocean...alone! Then I went to my favorite little dress shop on earth and although I didn't buy a thing, I had so much fun looking and trying things on! A few more sizes...perhaps the next trip here....and I WILL be making some purchases! But no sense buying when I plan to shrink out of it! :o)

From there I visited an old buddy at an antique shop....then had lunch with 2 gal pals that are artists...that I knew before any of us turned to art. After that, I visted yet another artist friend. Such a wonderful day seeing friends I haven't seen in nearly a year. I do need to come visit a bit more often. It's good for the soul!

Hubby did not get the results of the re-take of the kidney function test hopefully sometime tomorrow. We are sort of in limbo as we don't really know if he is still going to have foot surgery on Tuesday.

We did agree on a location if we decide to move here...but so far, his feet have shown no improvement on this trip. So perhaps there is no relationship to altitude and feet.....but I still much prefer the temperate climate....and the thought of no seasons is just fine with me. I do think I could live anywhere along a southern seashore....the Atlantic, Pacific or Gulf Coast. I love the ocean and I love the climate.

But a note to self....he has been sleeping more and more this week. Taking naps between work related calls during the day. I heard him snoring at 10 am this morning! He's snoring now. The doctor has taken him off the meds for his uric acid problem...because of the creatinine level reading....and I imagine that also has something to do with his feet not improving here.

It doesn't end, does it?

I've also been wondering this week.....for all the tell-tale signs that I can see on the outside of his body....the gnarls on his feet, the uric acid boils, the red inflamed joints in his wrists, and the open sores on his arms....what must be going on inside of him? It just makes you wonder.

Wednesday, September 26, 2007

OIY! What a day!

There is a fine line (I think) between what is related to sugar lows and what is normal learned behavior. But when there are rapid changes in behavior....then I'm content to blame it on sugar lows. And this week....I'd have to say the problem is definitely memory/anger related.

I have noticed that when he is on business calls...he is just totally yelling at staff. He is so angry with everything that is going on at work right now I think he's going to have a heart attack. I mean the word "fuming" doesn't describe his anger. And he has been so calm for quite some time now. Can't help but wonder if this isn't sugar level related.

Yesterday was such a fiasco. After 2 hours of getting him his ID for here, then going to the labs, and him arguing that it wasn't the right labs....I said last night, "why don't we go do the labs as early as possible and then from there go down to .....and check out new housing developments going in?"

This morning, I'm still in my jammies, lounging around, sort of thinking "how nice....lazy day" and he comes out and says, "I'm ready to go!"

I'm totally stunned! I said, "go get the labs done? Are you done for the day?" Well, of course not! And after a bit of me explaining and asking questions, he says, "I really didn't hear you say anything about going to look at new developments". So I reminded him of his comments back to me yesterday and he did agree that we had discussed that, he just totally forgot.

Is that normal behavior or is he having a sugar low? Was he having a low yesterday when we were talking about our plans for today and he just really didn't remember? I want to believe him, but......

So I got dressed and drove him down to get the labs done. We stopped on our way back for some breakfast and as I'm driving, I decide that I'm not going to do any more househunting. It's just not worth it. Moving is NOT going to solve anyting. Moving to a one level condo is not going to make this problem any better. Oh, yes, it will solve the problem of crutches, but we can also just put a bed in the living room on the main floor of our house. I just think today (and maybe I will feel different in the morning) that rather than deciding where to move, I need to decide whether to move out or stay with him.

It hit me that wanting to move for the sake of getting him into a one level place is just an escape for me. It's running away from our current problems. And yes, maybe I need to run away....but I need to do it alone. I have now spent a second morning helping him out with diabetic related issues and I SWORE I would not do this. This happens to be "my" vacation as well....and I need to start it today!

So I've called an old friend, an older lady, and I'm going to go visit her this afternoon. Much more fun than looking for a place to live at sea level! :o)

And I made another decision. I am going to spend this fall/winter downsizing. I'm going to sell stuff and give stuff away, clean out things and get ME to a bare minimum position. Then next spring, I will make my decision as to whether I stay or leave. Baby steps. Just doing one thing at a time. It's all I can handle with everything else that's going on.

Tuesday, September 25, 2007

Creatinine level is 2.4

He looked it up online today and shared that with me at breakfast. So I simply started asking questions. What do you think that means? Do you think this is why your feet are so bad? Do you think they might delay the surgery? Do you think changing your insulin shots has any baring on this?

Normal conversation going on at breakfast. He said he was tired of taking 3 shots a day and was only going to take 2. So I quietly asked him why was he taking them at 6 am and 10 pm, not 6 am and 6 pm like he used to do and he said because it's what was easy to do.

Now, I know I was pushing and I still don't for one second think this is what his doctor has ordered him to do, but he claimed it was, so I said, "I sure wish I could just quit taking my pills because I think that's what would be easiest for me!" (He knows that I have a severe gag reaction and will often vomit just from taking a few vitamins.) And he says, "You have done that." And I said, "Only after discussing it with my doctor and getting their approval." And he said, "this is a STUPID argument...just drop it!"

Well, I did not think it was an argument at all.....but more confirmation that his doctors do not know he has changed his insulin. Because there's no other reason this suddenly became a "stupid argument" except I he knows he is not telling me the truth. It just makes no sense to me that they would make a change when all was going so smoothly....and here we are back to our daily arguments, confrontations, heated discussions.

And yes, I still chant in my brain "I have 2 choices....stay or leave". Well, today, I'm thinking more and more than I'll be packing my bags and moving on in a few weeks/months because I just am not going to put up with this change in his behaviour.

So anyway.....we got back after breakfast and I've been doing some research and found some interesting websites that I rather like.

This one talked about creatinine levels and using a GFR calculator:

This one provides a GFR calculator:

So here's where my hubby is:

Stage 4: Severe reduction in GFR (15 to 29). Continue following the treatment for complications of CKD and learn as much as you can about the treatments for kidney failure. Each treatment requires preparation. If you choose hemodialysis, you will need to have a procedure to make a vein in your arm larger and stronger for repeated needle insertions. For peritoneal dialysis, you will need to have a catheter placed in your abdomen. Or you may want to ask family or friends to consider donating a kidney for transplantation.

I don't think his health care will do anything until he gets a GFR of 15.

He did call his doctor's office when we got back here and they ordered new labs for him. Of course, I spent 2 hours on the phone making arrangements to have them done where we are since we are not at home and insurance has to be pre-notified for out-of-area services. (I'm totally thinking we are not going to move because it is just going to be more work that it's worth!!!)

Don't tell me this disease doesn't impact the spouse! That's TWO hours out of my life taking care of the administrative end of this for him. No, he couldn't do it, he's working "on the clock" today and doesn't have time to make all those calls.

We will go get the labs done this afternoon and then I think he should have the results by Thursday. Well, there is a chance the reading is a fluke, but I'm thinking with all the other symptoms/changes we have gone through lately, there is something major going on in his body at this time.

an interesting website stating that at stage 4, 45.7% will die within 5 years. 19.9% will be on RRT within 5 years. With an even higher chance of death from heart related problems.

And did I remember to note that he did NOT bring his glucose meter with him on this trip? We are gone for 10 days and no ability to test his blood sugars. I just think this is even more indication that he remains in denial as to how serious his kidney disease is.

Monday, September 24, 2007

Early morning anger

Well, today we were driving across some pretty baren land, no traffic at all, and things were quite lovely. But as we headed into the "big" city....traffic increased and his patience decreased. Right about 10:30 am (the time of his past lows) he just nearly blew up at the traffic around us. No one could do anything right. And he would go right up to the bumper of a semi before passing them when there was no reason he could not have merged left a long way back. Scared me to death!

So I told him I was ready to drive. He pulled into a gas station and totally blew up over a simple issue with the pump and his credit card. Just as angry as I have ever seen him in my life. I just hate it when he gets this way.

I would so much rather drive than listen to him swear at every other vehicle on the road. And he is not always like this. I think it's just when he is having a bit of a low. Today was quite bad.

As for the incontenence, we had 2 more incidences on this trip, but handled them by just immediately pulling over. Now, when there's no traffic around, that's quite ok. But when there's a ton of other cars going past you? I just wonder when it will be a cop that pulls up next to him while he is relieving himself along the freeway. Yes, he is going to have to see a doctor about that as soon as we get back home. The big question is....will he?


Kidney Failure and denial

Yesterday, we were at his parent's house and his dad asked him how his diabetes was. He said, "just fine".

His dad said, "why are you having surgery on your foot then?" and he replied, "I have a bone spur that they want to remove.

This morning, we are on the road to our final destination, he cell rings and it's his doctors office. Well, it is the surgeon's office. They are calling because they are concerned that his creatin level is way too high from the pre-op lab work and they want him to call his regular physician's office. He told them he would do that.

He hung up and I asked him what that meant? He said, "I'm going to die."

And I said, "No, seriously, does it mean dialysis?"

And he said, "well, it could".

It's now 6:42 pm and he did not call his doctor's office. So I gently asked if he was going to do that in the morning, and he said, "sure".

So I'm trying to get inside his head and figure this out. (OK, I KNOW that's not possible, so I'm just making notes to myself again).

He told his dad that his diabetes is just fine. Because he has said that diabetes is a disease of the pancreas, not of the kidneys.

Kidney failure has nothing to do with his diabetes. It is a result of the pancreas not producing insulin, and the kidneys wearing out. (Truly, I think this is how this man thinks).

I have yet to figure out why his doctor had him reduce the insulin shots from 3 per day to 2 per day, but there has been a direct increase in the number of morning screaming matches between us. (More on that one later and ok, not really screaming matches....but he is definitely irritated in the mornings!)

His foot surgery is to remove a bone spur. Well, I swear it's calcified gout....will be interesting to hear what the doctor tells me as I plan to be right there and will be asking a whole lot of questions.

I also plan to get another appointment with the diabetic nurse and the nutritionist as soon as we get back home as I really want to know why the changed his insulin. Everything was going pretty calm. And now it's not.

But my main concern is why this guy cannot see that ALL of this is related to diabetes. And that he could prevent so much of it if he would just take better care of himself.

I know I am not ready for him to be on dialysis. I just know it will be my hell on earth.


Helping Spouses

Albert sent me a link to this site:

And I read the article and here are my thoughts on it.

1. Yes, I do agree, a spouse can be the gentle snowfall. “Advice is like snow; the softer it falls, the longer it lingers in the mind.”

However, I have lived high in the mountains where a soft, gentle snow, that keeps coming down...and doesn't stop....can turn into a 5 foot drift and no one can plow through it for days on end! :o)

2. "they call this strategy “dropping the rope,” she says. The idea comes from training horses. When a horse in a corral is pulling back and resisting being led somewhere, you drop the rope and wait. Eventually the horse will start following you around."

I grew up on a 160 acre horse always said, "you can lead a horse to water...but you can't make him drink." And on ropes, he always said, "give a man enough rope, he will hang himself."

Touche for cute little sayings!

3. "Family partners are in fact so closely linked, Professor Fisher says, that if one of them has diabetes or is obese, the other is at an increased risk of getting the condition or the weight. If one of them eats too much fat or too many carbs, the other is likely to do the same"

OK, so this scares the crap out of me!!! And a huge reason why I changed my eating/exercise habits.

4. "The positive side of that equation is that when one partner loses weight, the other one will do better than before"

So NOT true! I have lost 25 pounds this summer, he has gained 40 pounds. I'd like that therapist to explain that! I think the more I work at eating healthy...the more he balks at eating anything but crap.

5. "The best strategy is to show, rather than tell, your partner with diabetes how to control it by eating sensibly, losing weight, and exercising" and "it’s in your power to lead him there."

OK, I would LOVE to meet a therapist who will for once in their limited perspective put their thinking caps on and step into the life of a spouse of a diabetic. It is NOT my job to "lead" him to better eating. It is NOT in my "power" do to anything to change this man! It does NOT MATTER what I do with my own life....he is going to do exactly what he wants to do with his life. I can expend hours and hours cooking healthy food, preparing him the best meals possible, stocking the refrigerator with only healthy food, filling the pantry with nothing but the best. This man will get in the car and drive 1/2 mile to Burger King 20 minutes after dinner and have a burger, fries and shake. He will go a mile to the store and get a bag of potato chips, come home, and eat them all in one setting. SEE # 4 ABOVE!!!

The concept is a good one, that as a spouse, you can set an example. But concepts are just that. And they do not work in the real world. You cannot lead someone to a healthy lifestyle if they do not want to go there. You cannot change another person. You cannot, cannot, cannot do that. Not if that person does not want to change.

And my personal opinion is that when another person is in denial, in grief, refuses to face the facts, refuses to admit what is wrong.....they will not even begin to see where you are trying to lead them.

Yep, I'm about ready to sit down and eat an entire cheesecake tonight! LOLOL!

Therapists and counselors "think" they know what the answers are...but until you walk a mile in my shoes......

oh, that was another one of dad's great sayings.