A lot of my posts here are just to keep a journal of what's going on. His labs are declining. The nephrologist called and wants to schedule an ultrasound of his kidneys as he thinks there might be a tumor.
My best guess - it's his heart. Here's why I say that.
His last labs were 1/18. Current labs were 4/13.
BUN jumped from 26 to 36. Normal is 7 - 23. It's been as high as 63 in the past! It's the test for blood in the urine and normally means either there is something blocking the kidneys, you are exercising too much, or your heart is not pumping enough blood through the kidneys.
His A1c is 8.3
Microalbumin, ur, detection limit should be under 30. His is 966. But that's down form 2039. Yes, you read that right!
Microalbumin/creatinine should be under 30. It's 720.5. Again, that's down from 2368 two years ago.
Protein, UA, ql should be negative, his is 2+. But that's down from 3+.
I have been charting his labs since 11/16/04 on a spreadsheet on my laptop. I wish the doctors would just sit and go back over where he's been in the past 14 years. This BUN is actually pretty good. For him. But I also am more and more aware that he is now 8 years post bypass surgery and we should expect to see more heart issues popping up. I'm also aware that he is taking his nitroglycerin again.....and he has not told any of his doctors that he's doing that!
Most days I just shake my head and forge ahead! His GFR is down to 40%, but of course it's been down to 0 in the past. While 40% kidney function is pretty good, the other labs are an indication that they (kidneys) are not filtering the waste properly.
Who knew I'd become such a pro at reading labs over the years? I cringe when I ask someone else what their GFR is and they have no clue what I'm talking about! Perhaps all of us should take heed to and pay better attention to our labs and get to know what they mean. It sure can't hurt!
DW
Friday, April 20, 2018
Friday, April 06, 2018
Going blind
He's refusing to go see the eye doctor.
For awhile, he just had "floaters" clouding his vision.
Then it was florescent blue spots.
Now, there are flashes of bright white light and it happens when his eyes are closed.
From what I can see from internet research, his retinas are detaching.
There are thing that could be done to help him.
He's refusing to go to the doctor.....for anything.
He cannot see anything from sunrise til about 11 am, or from about 2:30 pm til sunset. He says it just looks blank in front of him, but he can see some around the edges. He thinks it the direction of the sun.
I asked him yesterday what his plan was for when he goes blind. He said he would just walk into the sunset. Jokingly, I asked him how he would know where the sun was if he couldn't see it. He said he'd walk towards the heat.
Maybe it's good that he can joke about this.
But I was quite serious. I have no idea what we will do and I think we need a plan. Obviously he doesn't.
He said he was up almost all night last night with the flashes. I don't know how he can go so long with so little sleep.
We are having a spring/winter/spring/winter mix of weather. When it's warm, I'm outside working in the yard and sometimes I think I'm trying to kill myself. I was so tired last night I just dropped into bed and fell sound asleep. At least it is keeping my mind on something other than the prospect of him going blind. And it's keeping me busy!
The blessing is that he's not blind yet.
DW
For awhile, he just had "floaters" clouding his vision.
Then it was florescent blue spots.
Now, there are flashes of bright white light and it happens when his eyes are closed.
From what I can see from internet research, his retinas are detaching.
There are thing that could be done to help him.
He's refusing to go to the doctor.....for anything.
He cannot see anything from sunrise til about 11 am, or from about 2:30 pm til sunset. He says it just looks blank in front of him, but he can see some around the edges. He thinks it the direction of the sun.
I asked him yesterday what his plan was for when he goes blind. He said he would just walk into the sunset. Jokingly, I asked him how he would know where the sun was if he couldn't see it. He said he'd walk towards the heat.
Maybe it's good that he can joke about this.
But I was quite serious. I have no idea what we will do and I think we need a plan. Obviously he doesn't.
He said he was up almost all night last night with the flashes. I don't know how he can go so long with so little sleep.
We are having a spring/winter/spring/winter mix of weather. When it's warm, I'm outside working in the yard and sometimes I think I'm trying to kill myself. I was so tired last night I just dropped into bed and fell sound asleep. At least it is keeping my mind on something other than the prospect of him going blind. And it's keeping me busy!
The blessing is that he's not blind yet.
DW
Thursday, March 08, 2018
Interesting things about traveling
He had a very hard time adjusting to altitude changes. I thought that was interesting. The higher the altitude, the more nitroglycerin he took and the more difficulty he had breathing. I don't think either of us were prepared for that.
Temperature changes affected him as well. If he got cold, he put on gloves....and I'd be so hot I'd have the AC on blast!
Almost a comedy of errors. He worried constantly about having enough insulin. I reassured him that we were never more than 3 or 4 days from home and could start back any time he wanted.
We were gone almost a month. I loved every moment of it. Pretty sure he hated everything about it! LOL!!! But coming home was a shocker to me. I don't think he moved the first 4 days that we were back. And even now, a couple of weeks later, he sits in his recliner nearly 24/7.
He got a new bed and while the mattress is great...he doesn't use it. Says his hips hurt if he lays down too long. I think that might be true with any mattress.
Sometimes I wonder if he is just waiting to die. Nothing interests him. Nothing motivates him. As far as I can tell, he has stopped doing anything that he enjoyed. LED lights, 3D printing. He is like a zombie just sitting there watching TV.
I reminded him that he had said he would go see the doctor about getting his cataracts removed. He said, "I don't think I'm going. I might as well just go blind." I just looked at him and said, "who is going to take care of you?" Of course, I will....but I don't want him thinking that! If there's a chance surgery will help, he needs to do the surgery. (Remember, he has had cornea transplants so the first issue is finding someone who would even agree to do the cataract surgery!)
We are plodding along. One day at a time. He is getting a little more involved in life here at home and I've hit the trail full blaze. Lots of activities with my friends and prepping the yard for spring and all the work that comes with setting in new plants. And I decided to rip out the back corner to have a spot to park our little camper. Maybe I keep busy so I don't have time to stop and think about his disease. Maybe it's a form of denial. Denial of what the future holds more than denial about the disease I think.
I'm off for a getaway weekend tomorrow with a bunch of gal pals. Looking forward to it!
DW
Temperature changes affected him as well. If he got cold, he put on gloves....and I'd be so hot I'd have the AC on blast!
Almost a comedy of errors. He worried constantly about having enough insulin. I reassured him that we were never more than 3 or 4 days from home and could start back any time he wanted.
We were gone almost a month. I loved every moment of it. Pretty sure he hated everything about it! LOL!!! But coming home was a shocker to me. I don't think he moved the first 4 days that we were back. And even now, a couple of weeks later, he sits in his recliner nearly 24/7.
He got a new bed and while the mattress is great...he doesn't use it. Says his hips hurt if he lays down too long. I think that might be true with any mattress.
Sometimes I wonder if he is just waiting to die. Nothing interests him. Nothing motivates him. As far as I can tell, he has stopped doing anything that he enjoyed. LED lights, 3D printing. He is like a zombie just sitting there watching TV.
I reminded him that he had said he would go see the doctor about getting his cataracts removed. He said, "I don't think I'm going. I might as well just go blind." I just looked at him and said, "who is going to take care of you?" Of course, I will....but I don't want him thinking that! If there's a chance surgery will help, he needs to do the surgery. (Remember, he has had cornea transplants so the first issue is finding someone who would even agree to do the cataract surgery!)
We are plodding along. One day at a time. He is getting a little more involved in life here at home and I've hit the trail full blaze. Lots of activities with my friends and prepping the yard for spring and all the work that comes with setting in new plants. And I decided to rip out the back corner to have a spot to park our little camper. Maybe I keep busy so I don't have time to stop and think about his disease. Maybe it's a form of denial. Denial of what the future holds more than denial about the disease I think.
I'm off for a getaway weekend tomorrow with a bunch of gal pals. Looking forward to it!
DW
Wednesday, February 14, 2018
Day 23 of traveling with Diabetes.
There have been great days, good days, bad days and horribly awful days. Just the same as when we are at home. But I am living in a 17' travel trailer and all the utter nastiness of diabetes is in my face 24/7. Thankfully, I can go outside a lot as we are in southern Arizona and the weather has been amazing!
We extended our time here by 10 days. I am having so much fun visiting with my sister and exploring the area. My brother-in-law comes by every day to have a chat with hubby. They have their RV about a mile from the "resort" we are staying in.
I suppose we are not really on the road as we set up and have stayed put the entire time. Hubby is running low on insulin as we hadn't planned to stay quite this long, so we will be heading back home this weekend.
Yesterday, I saw that he had his nitroglycerin bottle out. I asked if he had been taking them. He said "no". I said, "when is the last time you had one?" He said, "a week ago". Sigh! Well no, not really "sigh". I have done enough research to know that his high sugar level means that the nerve endings in his heart have to be impacted. It's also been 9 years since he had his triple bypass surgery and back then the surgeon said that he couldn't find enough good blood vessels to do the 5 bypasses he had wanted to do.
So the reality of it is that he is at a high risk to have a heart attack. And I am well aware of that.
The second issue was a conversation we had late last night. We had been out to dinner with my sis and brother-in-law and as we were driving home, he said that he hoped I didn't mind doing all the driving. Jokingly, I said, "what? and have a blind man drive me around???" LOL! To which he replied that he was grateful I was willing to do all the driving and he realized that he was going blind and that it probably wouldn't be long before he couldn't see a thing.
And yes, I have known for some time that he is slowly going blind. It must just be horrible being the diabetic that he is. I would be lashing out in anger 24/7 at the things that were happening to my body. Yet at the same time, he has done absolutely nothing to prevent any of this. And he has to have known this was his future.
Some days I worry about what will happen when he goes completely blind. I already know that he is not going to go to school for the blind or even try to manage his way around. I pretty much imagine he will simply give up. Yet I will have to keep going. Other women have cared for blind spouses - it will just be something we adjust and adapt to.
I tell myself that this new adventure will either kill him, or make him stronger. Ha! There have been moments when I think it will kill me! But overall....it has been an adventure. We have laughed at ourselves quite a bit. Dumping the sewer is not something I want to do. But if he can't see......and trust me, there are plenty of jokes to follow that line!
This is our first time in a travel trailer. We are learning so much. Brought the wrong things, too much and then not enough of other items. He had a complete utter melt down one day in front of the people parked next to us. I was mortified. But I held my head high and just kept on going. What else can you do? He threatened once to take the truck and leave me here. I just ignored his comment figuring once again that his sugars were out of whack! But in my head I was thinking I'd just have my brother-in-law tow me home.
Personally, I love being outdoors. This has been so refreshing. There is something about the cool morning air that gets my blood flowing. And the temps here have been perfect. Upper 70s in the day, upper 50s at night. We are surrounded by hundreds of Canadians who no longer feel safe going into Mexico for the winter. Yet they can be here and cross the border any time to get cheaper meds and services. Yep, I forgot my passport! LOL!
It is nice on one hand to have such a complete, total break from our every day life and in ways I'm dreading going back next week. On the other hand, adjusting to live in a travel trailer with "him" has been a challenge. I think it's been worth it and I hope we can do this again sometime soon. If nothing else, I am making sure that I can handle driving, towing, winterizing, dewinterizing....everything that one has to do to have a getaway vehicle. And this summer I plan to join my sis and her hubby on their weekend camping adventures. It will give me some much needed mini retreats to look forward to.
DW
We extended our time here by 10 days. I am having so much fun visiting with my sister and exploring the area. My brother-in-law comes by every day to have a chat with hubby. They have their RV about a mile from the "resort" we are staying in.
I suppose we are not really on the road as we set up and have stayed put the entire time. Hubby is running low on insulin as we hadn't planned to stay quite this long, so we will be heading back home this weekend.
Yesterday, I saw that he had his nitroglycerin bottle out. I asked if he had been taking them. He said "no". I said, "when is the last time you had one?" He said, "a week ago". Sigh! Well no, not really "sigh". I have done enough research to know that his high sugar level means that the nerve endings in his heart have to be impacted. It's also been 9 years since he had his triple bypass surgery and back then the surgeon said that he couldn't find enough good blood vessels to do the 5 bypasses he had wanted to do.
So the reality of it is that he is at a high risk to have a heart attack. And I am well aware of that.
The second issue was a conversation we had late last night. We had been out to dinner with my sis and brother-in-law and as we were driving home, he said that he hoped I didn't mind doing all the driving. Jokingly, I said, "what? and have a blind man drive me around???" LOL! To which he replied that he was grateful I was willing to do all the driving and he realized that he was going blind and that it probably wouldn't be long before he couldn't see a thing.
And yes, I have known for some time that he is slowly going blind. It must just be horrible being the diabetic that he is. I would be lashing out in anger 24/7 at the things that were happening to my body. Yet at the same time, he has done absolutely nothing to prevent any of this. And he has to have known this was his future.
Some days I worry about what will happen when he goes completely blind. I already know that he is not going to go to school for the blind or even try to manage his way around. I pretty much imagine he will simply give up. Yet I will have to keep going. Other women have cared for blind spouses - it will just be something we adjust and adapt to.
I tell myself that this new adventure will either kill him, or make him stronger. Ha! There have been moments when I think it will kill me! But overall....it has been an adventure. We have laughed at ourselves quite a bit. Dumping the sewer is not something I want to do. But if he can't see......and trust me, there are plenty of jokes to follow that line!
This is our first time in a travel trailer. We are learning so much. Brought the wrong things, too much and then not enough of other items. He had a complete utter melt down one day in front of the people parked next to us. I was mortified. But I held my head high and just kept on going. What else can you do? He threatened once to take the truck and leave me here. I just ignored his comment figuring once again that his sugars were out of whack! But in my head I was thinking I'd just have my brother-in-law tow me home.
Personally, I love being outdoors. This has been so refreshing. There is something about the cool morning air that gets my blood flowing. And the temps here have been perfect. Upper 70s in the day, upper 50s at night. We are surrounded by hundreds of Canadians who no longer feel safe going into Mexico for the winter. Yet they can be here and cross the border any time to get cheaper meds and services. Yep, I forgot my passport! LOL!
It is nice on one hand to have such a complete, total break from our every day life and in ways I'm dreading going back next week. On the other hand, adjusting to live in a travel trailer with "him" has been a challenge. I think it's been worth it and I hope we can do this again sometime soon. If nothing else, I am making sure that I can handle driving, towing, winterizing, dewinterizing....everything that one has to do to have a getaway vehicle. And this summer I plan to join my sis and her hubby on their weekend camping adventures. It will give me some much needed mini retreats to look forward to.
DW
Tuesday, January 30, 2018
Why?
why do diabetics get in such snits when they have a sugar crash?
Why don’t diabetics eat on schedule?
Why don’t they test regularly?
Why don’t they take better care of themselves?
Why does a diabetic expect their spouse to take care of them?
If you know you have sugar crashes, why don’t you carry your glucose tabs in your pocket?
Why do you expect someone else to go get them for you?
Why do you think the world revolves around you, when it doesn’t?
Why do you have to get pissed off in public and show your ugliest version of yourself when you are crashing?
Why do you take it out on your spouse?
Why can’t you remember exactly how ugly you just acted?
Why do you get so pissed off just because your spouse is too worn out, too exhausted to care?
Why can’t you comprehend that your ugliness is what wears your spouse out?
Why do you seem to think that getting nasty and yelling will do anything at all?
Why can’t you think?
Why can’t you have an ounce of logic or reason?
Why do you expect others to tolerate such horrid behavior?
How long do you think anyone can love you when you are being so ugly?
WHY?
Why don’t diabetics eat on schedule?
Why don’t they test regularly?
Why don’t they take better care of themselves?
Why does a diabetic expect their spouse to take care of them?
If you know you have sugar crashes, why don’t you carry your glucose tabs in your pocket?
Why do you expect someone else to go get them for you?
Why do you think the world revolves around you, when it doesn’t?
Why do you have to get pissed off in public and show your ugliest version of yourself when you are crashing?
Why do you take it out on your spouse?
Why can’t you remember exactly how ugly you just acted?
Why do you get so pissed off just because your spouse is too worn out, too exhausted to care?
Why can’t you comprehend that your ugliness is what wears your spouse out?
Why do you seem to think that getting nasty and yelling will do anything at all?
Why can’t you think?
Why can’t you have an ounce of logic or reason?
Why do you expect others to tolerate such horrid behavior?
How long do you think anyone can love you when you are being so ugly?
WHY?
Thursday, January 25, 2018
On the road with diabetes
well, we are now in our 4th day of this adventure and I must say...what a trip!!
First night in our tiny travel trailer it was 9 degrees outside! Second night we joined up with my sis and her hubby was so much help! But we boondocked for the next 2 nights. Charged the batteries during the day with a generator in order to run his c-pap machine at night.
I have not slept in the same room with him in years and here we are inside a 17’ x 8’ trailer!!! Who is going to kill who first??? LOL!!
Tonight we are at an RV resort in Yuma AZ. Gorgeous property. We have the tiniest trailer nestled between huge RVs. Interesting experience.
First night out, he forgot to take his evening meds. He went to the bathroom 12 times that night.
He has had numerous melt downs, I just walk away. He twisted his knee real bad. I offered to find an ER. He said no. I said I didn’t want to hear about his knee.
Our biggest fights have been over the pups. He doesn’t want to walk them or keep them on a leash. I told him that he does, or we get rid of them. So far, doing better.
I love driving, watching the scenery, seeing the road go past us. My brother in law has lung cancer. He has a 5 year death penalty. My sis is thrilled to have us here. We have already spent way too much time together. She is obsessed with getting 10,000steps in a day. I’ve kept up for 2days now, but my legs are aching bad tonight and I just want to tell her I need tomorrow off. Sure hoping I wake up ready to go.
If nothing else, I think this tripmight get him on some kind of regular schedule. At least I hope it does.
And being with my sis....who faces certain widowhood, makes me appreciate my life a bit more.
There is always someone out there who has it a little worse than you. Just find them. I promise it will help you more than you know.
DW
First night in our tiny travel trailer it was 9 degrees outside! Second night we joined up with my sis and her hubby was so much help! But we boondocked for the next 2 nights. Charged the batteries during the day with a generator in order to run his c-pap machine at night.
I have not slept in the same room with him in years and here we are inside a 17’ x 8’ trailer!!! Who is going to kill who first??? LOL!!
Tonight we are at an RV resort in Yuma AZ. Gorgeous property. We have the tiniest trailer nestled between huge RVs. Interesting experience.
First night out, he forgot to take his evening meds. He went to the bathroom 12 times that night.
He has had numerous melt downs, I just walk away. He twisted his knee real bad. I offered to find an ER. He said no. I said I didn’t want to hear about his knee.
Our biggest fights have been over the pups. He doesn’t want to walk them or keep them on a leash. I told him that he does, or we get rid of them. So far, doing better.
I love driving, watching the scenery, seeing the road go past us. My brother in law has lung cancer. He has a 5 year death penalty. My sis is thrilled to have us here. We have already spent way too much time together. She is obsessed with getting 10,000steps in a day. I’ve kept up for 2days now, but my legs are aching bad tonight and I just want to tell her I need tomorrow off. Sure hoping I wake up ready to go.
If nothing else, I think this tripmight get him on some kind of regular schedule. At least I hope it does.
And being with my sis....who faces certain widowhood, makes me appreciate my life a bit more.
There is always someone out there who has it a little worse than you. Just find them. I promise it will help you more than you know.
DW
Thursday, January 18, 2018
Pharmacies....hahaha!
Hubby normally has his prescriptions mailed to him, but we are taking a little trip and wanted to make sure he got them, so had them filled at the HMO pharmacy....45 miles away. They called and said they were in so we made the trip today.
His Humulin R U-500 was not in. He has gotten the vial and syringes for years. Today, they told him he had to switch to the Qwik-set pen. I was in the car and he called me. I went in, and when I asked why he couldn't get the vial, the gal said, "we can no longer get it."
I asked, "why not?" And she said, "they are no longer manufacturing it."
I had already checked Eli Lilly on my iPhone and showed her the website and said, "they are still manufacturing it." To which she replied, "it is no longer on our formulary."
So I said, "I checked your formulary in November and it was on the 2018 formulary. You cannot change your formulary mid year and it is the ONLY reason with have stayed with this HMO."
I had her in a corner and she said, "I'll let you talk to the pharmacist." And of course he started in with the same line of conversation, but when I got to the part that the could not change their formulary, I saw a look in his eyes and I knew immediately that he knew I was right!
He made 1 phone call and the vial will be in tomorrow.
But it means another 90 mile round trip to the pharmacy.
I suggested to Hubby that we make a visit to his endocrinologist when we get home (heading out for about 3 weeks on Monday) and discuss the pen with her. It sounds like the HMO will be taking the vial off their formulary in 2019.
Now, why wouldn't he want the pen? Well, his dad used to have his insulin administered by a pen. It takes much longer to go in, and even I'm smart enough to realize that I wouldn't want a needle sticking down in my skin a nano second longer than necessary.
Why would anyone??? What is wrong with the pharmaceutical industry that they want to inflict pain and suffering on anyone???
He currently uses a 31G needle....one of the thinest there is. The Qwikset pen comes standard with a 29G...a little bigger. But he said the main thing is the time the needle remains under the skin and that is how the pen pumps the insulin out. I'll take his word for that (as I sit here and cringe at the very thought of a needle going into me....do not even try to tell me that you get used to it!!!) I'm the queen of needle phobia - just ask anyone!
When hubby had his open heart surgery, my brother insisted on going in with me the first time I saw him after the surgery. My brother was certain that I would pass out from the sight of all the needles, IVs, etc. I didn't. But I did go weak in the knees and was ever so grateful that my brother was by my side! To this day I can barely stand to have blood drawn. It's just a thing. So I can't fathom giving myself a shot every day and it it hurt for one second, I wouldn't do it! So in this instance, I will come to hubby's defense!
But you have to wonder.....does the pharmacy think they can just switch this for anyone? What if I hadn't been there to make the statements I did? What gives the pharmacy staff the right to blatantly lie to me....that it wasn't being manufactured....that it wasn't on their formulary??? Do they think everyone who walks through the door is a moronic idiot who will just do exactly what they say?
This is January. They have to provide the vials for 11 more months! They HAVE to, by law, notify him in writing that the product is no longer available. And they cannot change the formulary mid year. Did you know that???
Years ago I managed a medical billing unit for a huge home health care agency. That experience has paid off 100 times in my lifetime. I get that the HMO wants to "save" money, or keep people from dosing incorrectly. But this is a guy who has been using a vial and syringes for years. Not someone who just started. And I will never understand blatantly lying to a customer. Simply beyond my comprehension!
So tomorrow, we will get up at the butt crack of dawn and drive 90 miles round trip. All I can say is that a VIAL of Humulin r-U500 better be there! LOL!!!
DW
His Humulin R U-500 was not in. He has gotten the vial and syringes for years. Today, they told him he had to switch to the Qwik-set pen. I was in the car and he called me. I went in, and when I asked why he couldn't get the vial, the gal said, "we can no longer get it."
I asked, "why not?" And she said, "they are no longer manufacturing it."
I had already checked Eli Lilly on my iPhone and showed her the website and said, "they are still manufacturing it." To which she replied, "it is no longer on our formulary."
So I said, "I checked your formulary in November and it was on the 2018 formulary. You cannot change your formulary mid year and it is the ONLY reason with have stayed with this HMO."
I had her in a corner and she said, "I'll let you talk to the pharmacist." And of course he started in with the same line of conversation, but when I got to the part that the could not change their formulary, I saw a look in his eyes and I knew immediately that he knew I was right!
He made 1 phone call and the vial will be in tomorrow.
But it means another 90 mile round trip to the pharmacy.
I suggested to Hubby that we make a visit to his endocrinologist when we get home (heading out for about 3 weeks on Monday) and discuss the pen with her. It sounds like the HMO will be taking the vial off their formulary in 2019.
Now, why wouldn't he want the pen? Well, his dad used to have his insulin administered by a pen. It takes much longer to go in, and even I'm smart enough to realize that I wouldn't want a needle sticking down in my skin a nano second longer than necessary.
Why would anyone??? What is wrong with the pharmaceutical industry that they want to inflict pain and suffering on anyone???
He currently uses a 31G needle....one of the thinest there is. The Qwikset pen comes standard with a 29G...a little bigger. But he said the main thing is the time the needle remains under the skin and that is how the pen pumps the insulin out. I'll take his word for that (as I sit here and cringe at the very thought of a needle going into me....do not even try to tell me that you get used to it!!!) I'm the queen of needle phobia - just ask anyone!
When hubby had his open heart surgery, my brother insisted on going in with me the first time I saw him after the surgery. My brother was certain that I would pass out from the sight of all the needles, IVs, etc. I didn't. But I did go weak in the knees and was ever so grateful that my brother was by my side! To this day I can barely stand to have blood drawn. It's just a thing. So I can't fathom giving myself a shot every day and it it hurt for one second, I wouldn't do it! So in this instance, I will come to hubby's defense!
But you have to wonder.....does the pharmacy think they can just switch this for anyone? What if I hadn't been there to make the statements I did? What gives the pharmacy staff the right to blatantly lie to me....that it wasn't being manufactured....that it wasn't on their formulary??? Do they think everyone who walks through the door is a moronic idiot who will just do exactly what they say?
This is January. They have to provide the vials for 11 more months! They HAVE to, by law, notify him in writing that the product is no longer available. And they cannot change the formulary mid year. Did you know that???
Years ago I managed a medical billing unit for a huge home health care agency. That experience has paid off 100 times in my lifetime. I get that the HMO wants to "save" money, or keep people from dosing incorrectly. But this is a guy who has been using a vial and syringes for years. Not someone who just started. And I will never understand blatantly lying to a customer. Simply beyond my comprehension!
So tomorrow, we will get up at the butt crack of dawn and drive 90 miles round trip. All I can say is that a VIAL of Humulin r-U500 better be there! LOL!!!
DW
Tuesday, January 16, 2018
Starting this year with a bang!!!
I never make resolutions because I can't keep them. BUT.....I've decided that we are going to make a few changes around here! I think that I forget that I AM NOT THE ONE WHO HAS DIABETES! (OK, would you please come stamp that across my forehead so that every time I look in the mirror I get reminded???) LOL!!! This is HIS disease, not mine. And I/we do have a life!
We have been saving our pennies and it came down to the big decision. Do we remodel the kitchen or do we buy a small used travel trailer and join one of my sisters and her hubby on some of their adventures?
Hmmmm.... he wanted the kitchen, I wanted the trailer. And once we talked out all the pros and cons, even with his diabetes, we opted for the trailer. Why? because it will kill him or get him into better shape and all the kitchen remodel would do is make him want to cook more and eat more. HA! So his diabetes was a major input factor in my decision to go on the road. Can't stock too much in it. Going to have to grill most everything. Might force a healthier lifestyle when we are gone?
We are planning to join my sis in a couple weeks for a few days. Jump in head first....let my bro-in-law show us the ropes. We have fairly good health insurance which should cover any emergency anywhere. And we can always come home if things get too bad. Yep, I know, I will do most of the schlepping, cleaning, etc. But I do have a folding camping toilet from years ago and I might have to get one of those external pop-up tents for him to use. LOLOL!!!
If nothing else, it has already added a little spark in him. This is "our baby" and he wanted to go "baby shopping" immediately. I have a list of things for him to make with his 3D printer. He gets to do anything with LED lighting and I'm working on the decor. It's keeping my thoughts away from his limitations....and that's good!
Thank you for all your kind comments on my last post. You can always email me at diabeteswife@yahoo.com, just know that I rarely check that email.
This one touched my heart:
YOU ARE NOT ALONE!!! My intent wasn't to make you cry at all, yet I get that. Sometimes, just knowing that someone else is going through what you are going through helps so much.
And then there's the group of diabetics and professionals who will try to convince you that you have this disease and that because you are married to them, you have to take care of them, support them, and even be there to save them. I have my biggest gripes ever with those people. Get over it! Don't even dare to try to guilt me into thinking that I have this disease when I'm perfectly healthy!!!
And there are those who think I'm some type of hardened criminal because I don't sympathize with them. I do love my hubby. I'm still here after 12 years of this. I do support him, take care of him, even save him (read back about Feb, 2011 for that incident). All I can say to them is "walk a mile in my shoes" before you judge me.
The biggest disservice the whole diabetic industry has done (and yes, it IS an industry) is to guilt spouses into thinking that they are responsible for the spouse that has this disease. NO. NO. and NO!!! If you even dare to think that, walk away from this blog right now! LOL!!! But I also think it's a cop out for the person who has diabetes....that they have someone who will take care of them so they can take a day off, have a night out, not worry so much and think that the other person will be there to take care of them if they happen to fall into a coma.
Sorry - not my job!!!
When my son died this last September....once again, I had this sensation that no one understood me. Yet there are so many of us who outlive an adult child for a variety of reasons. I think it automatically throws us into a new group, gives us a new identity..."she lost her child" - a title no one wants to hold, ever. But we also have this identity we didn't ask for....."her husband has diabetes"...like it's a disease tossed upon us. And when you are handed a new title, it's so hard to retain the person you were before that title was applied. It's like how do you say, "I had 2 sons, now I have 1".....how do you change from being the mother of 2 to being the mother of 1? Kind of impossible.
Hubby had an episode 2 nights ago. When I woke up, he said, "I was at the door at 3 am getting ready to come wake you up and tell you to take me to ER. But then I threw up and I was ok after that." After much discussion, I almost think his symptoms sound like he was having some kind of minor heart attack. We went through that in 2009 down in a rain forest in southern Mexico. He is doing much of the very same thing. So I put the thought out there and of course....he refuses to go see his doctor. (But note, he was almost to the point of going to the ER!!!)
Do I sit here and panic over him having a heart attack? Do I put on hold all our plans for this new camper? NO! Life goes on and if he drops dead along the way it won't be one iota difference than sitting here waiting for it to happen! I think it's better to wait and deal with whatever happens when it happens than to sit home worrying and waiting for it to happen.
So I do believe that my motto for 2018 will be just that, "life goes on". If I can survive the death of my son, I almost feel like I can survive anything!
And to "Managing"...we do need to have a whole conversation about sex with a diabetic. Neuropathy is a horrible thing. He doesn't even want to hold hands because it irritates him. His skin has become extremely sensitive. And I know he can't feel a thing anymore. Yesterday, he couldn't feel the items that were in his pockets. He can't "feel" me when he touches me and his skin is too sensitive for me to touch him. Yep - that's what love is all about! They say love is patient. I think neuropathy takes it to a whole new level! I promise we'll have that conversation some time down the line. The good thing is that as you age, that sex drive does dwindle. I'm grateful I'm not 20-something any more!
With that thought in mind (that I'm not 20-something any more) it's hat's-off to what I hope might be an adventuresome 2018! Blessings to each of you. I pray for strength for you that you will do whatever it takes to turn your life around so that you can be happy. I pray for strength for you to sit down and write your own experiences and share them with the rest of us. I pray for strength for you to know that you are not alone at all in this experience, and to understand just how hard it is to put yourself out there when so many others will misconstrue what you write and decide, even declare on their blogs, what a horrible person you are.
We only have this one life. For some it is so much shorter than for others. For some, it is so much worse than for others. For me....I'm going to make the most of whatever I have! Here's hoping you can and will do the same!
DW
We have been saving our pennies and it came down to the big decision. Do we remodel the kitchen or do we buy a small used travel trailer and join one of my sisters and her hubby on some of their adventures?
Hmmmm.... he wanted the kitchen, I wanted the trailer. And once we talked out all the pros and cons, even with his diabetes, we opted for the trailer. Why? because it will kill him or get him into better shape and all the kitchen remodel would do is make him want to cook more and eat more. HA! So his diabetes was a major input factor in my decision to go on the road. Can't stock too much in it. Going to have to grill most everything. Might force a healthier lifestyle when we are gone?
We are planning to join my sis in a couple weeks for a few days. Jump in head first....let my bro-in-law show us the ropes. We have fairly good health insurance which should cover any emergency anywhere. And we can always come home if things get too bad. Yep, I know, I will do most of the schlepping, cleaning, etc. But I do have a folding camping toilet from years ago and I might have to get one of those external pop-up tents for him to use. LOLOL!!!
If nothing else, it has already added a little spark in him. This is "our baby" and he wanted to go "baby shopping" immediately. I have a list of things for him to make with his 3D printer. He gets to do anything with LED lighting and I'm working on the decor. It's keeping my thoughts away from his limitations....and that's good!
Thank you for all your kind comments on my last post. You can always email me at diabeteswife@yahoo.com, just know that I rarely check that email.
This one touched my heart:
I just read this whole post after writing my last comment and I'm drowning in tears. I didn't ever know there was anyone else out there with the exact same struggles as me. God bless you and thank you for sharing your journey so someone like me could feel less alone for even just a little while while reading your post.My dear sweetheart...you are never alone! There are tons and tons of us who are in the same shoes. There have to be according to the statistics as to the number of people who have diabetes and the statistics on the number of people who are married. But I think the problem is that very few of us dare to write the truth. I could not begin to express myself if anyone knew who I was - thus the hidden identity of my blog. I try hard to keep my identity secret for a couple of reasons. I don't want my hubby to be embarrassed....and he would be. I don't want my extended family and friends to know this much about my private life - it's none of their business. Yet I do need to keep a journal of what I am going through....so I can remember parts of it and so I can just get it off my chest and not worry about it.
YOU ARE NOT ALONE!!! My intent wasn't to make you cry at all, yet I get that. Sometimes, just knowing that someone else is going through what you are going through helps so much.
And then there's the group of diabetics and professionals who will try to convince you that you have this disease and that because you are married to them, you have to take care of them, support them, and even be there to save them. I have my biggest gripes ever with those people. Get over it! Don't even dare to try to guilt me into thinking that I have this disease when I'm perfectly healthy!!!
And there are those who think I'm some type of hardened criminal because I don't sympathize with them. I do love my hubby. I'm still here after 12 years of this. I do support him, take care of him, even save him (read back about Feb, 2011 for that incident). All I can say to them is "walk a mile in my shoes" before you judge me.
The biggest disservice the whole diabetic industry has done (and yes, it IS an industry) is to guilt spouses into thinking that they are responsible for the spouse that has this disease. NO. NO. and NO!!! If you even dare to think that, walk away from this blog right now! LOL!!! But I also think it's a cop out for the person who has diabetes....that they have someone who will take care of them so they can take a day off, have a night out, not worry so much and think that the other person will be there to take care of them if they happen to fall into a coma.
Sorry - not my job!!!
When my son died this last September....once again, I had this sensation that no one understood me. Yet there are so many of us who outlive an adult child for a variety of reasons. I think it automatically throws us into a new group, gives us a new identity..."she lost her child" - a title no one wants to hold, ever. But we also have this identity we didn't ask for....."her husband has diabetes"...like it's a disease tossed upon us. And when you are handed a new title, it's so hard to retain the person you were before that title was applied. It's like how do you say, "I had 2 sons, now I have 1".....how do you change from being the mother of 2 to being the mother of 1? Kind of impossible.
Hubby had an episode 2 nights ago. When I woke up, he said, "I was at the door at 3 am getting ready to come wake you up and tell you to take me to ER. But then I threw up and I was ok after that." After much discussion, I almost think his symptoms sound like he was having some kind of minor heart attack. We went through that in 2009 down in a rain forest in southern Mexico. He is doing much of the very same thing. So I put the thought out there and of course....he refuses to go see his doctor. (But note, he was almost to the point of going to the ER!!!)
Do I sit here and panic over him having a heart attack? Do I put on hold all our plans for this new camper? NO! Life goes on and if he drops dead along the way it won't be one iota difference than sitting here waiting for it to happen! I think it's better to wait and deal with whatever happens when it happens than to sit home worrying and waiting for it to happen.
So I do believe that my motto for 2018 will be just that, "life goes on". If I can survive the death of my son, I almost feel like I can survive anything!
And to "Managing"...we do need to have a whole conversation about sex with a diabetic. Neuropathy is a horrible thing. He doesn't even want to hold hands because it irritates him. His skin has become extremely sensitive. And I know he can't feel a thing anymore. Yesterday, he couldn't feel the items that were in his pockets. He can't "feel" me when he touches me and his skin is too sensitive for me to touch him. Yep - that's what love is all about! They say love is patient. I think neuropathy takes it to a whole new level! I promise we'll have that conversation some time down the line. The good thing is that as you age, that sex drive does dwindle. I'm grateful I'm not 20-something any more!
With that thought in mind (that I'm not 20-something any more) it's hat's-off to what I hope might be an adventuresome 2018! Blessings to each of you. I pray for strength for you that you will do whatever it takes to turn your life around so that you can be happy. I pray for strength for you to sit down and write your own experiences and share them with the rest of us. I pray for strength for you to know that you are not alone at all in this experience, and to understand just how hard it is to put yourself out there when so many others will misconstrue what you write and decide, even declare on their blogs, what a horrible person you are.
We only have this one life. For some it is so much shorter than for others. For some, it is so much worse than for others. For me....I'm going to make the most of whatever I have! Here's hoping you can and will do the same!
DW
Monday, January 01, 2018
Happy 2018!!!
We survived 2017. Amazing! If I had the energy I'd jump on the bed like the gal did in "The Holiday" Speaking of which, we've had a very nice, quiet holiday. I can't believe how fast 2017 flew by! I can't believe that I've been keeping this blog since 2006.....12 years!
We've had a few issues the past month. Something happened to the hardware in his back from the spinal fusion surgery and he had about 3 days of not moving at all. It resolved itself - thank goodness!
He is still vomiting about every other night. So he gets a good night's sleep and then is awake the next night. Is it gastroparesis? He seems to have all of the symptoms, but he's still refusing to go back to the doctor. Says he's only going when they make him go to get his Rx refilled.
His daily glucose monitoring remains way too high. He goes low in the mornings and does not take his full dose of insulin, then goes high in the afternoons so he delays dinner until bedtime. He's in such a mixed up cycle, but there's not much I can say or do. I've learned that much! LOL!
Overall, it's been quiet and calm and I am ever so grateful for that. I couldn't wish you anything better than a calm and quiet 2018!
DW
We've had a few issues the past month. Something happened to the hardware in his back from the spinal fusion surgery and he had about 3 days of not moving at all. It resolved itself - thank goodness!
He is still vomiting about every other night. So he gets a good night's sleep and then is awake the next night. Is it gastroparesis? He seems to have all of the symptoms, but he's still refusing to go back to the doctor. Says he's only going when they make him go to get his Rx refilled.
His daily glucose monitoring remains way too high. He goes low in the mornings and does not take his full dose of insulin, then goes high in the afternoons so he delays dinner until bedtime. He's in such a mixed up cycle, but there's not much I can say or do. I've learned that much! LOL!
Overall, it's been quiet and calm and I am ever so grateful for that. I couldn't wish you anything better than a calm and quiet 2018!
DW
Tuesday, November 28, 2017
Calvinnme wrote:
In some ways, I am lucky. He's been around way longer than I ever anticipated. :) In other ways, being a first hand witness to the slow decline this disease causes in the body is horrifying. The good thing is that it's making me want to be healthier!
My sis and I started a chair yoga class today. Boy! Did I feel it! I realized just how out of shape I am. You can walk every day and still not use the same muscles you use in yoga. We also did some of the machines at the gym. I'll probably be dead tomorrow. Should I just say "goodbye" now? ha ha!
So, I went to the grocery last Wednesday to stock up for Thanksgiving weekend. On the spur of the moment, I bought a large bag of plain potato chips and a large bag of BBQ chips. I thought with all the leftover turkey and ham - it would be good to have some chips to go with sandwiches. I went to look for them tonight and they are both gone. I asked him and yes, he had eaten them! ALL OF THEM!!!
There is no budgeting food in his mind. No eating in moderation. No "save it for tomorrow" - that's for sure. But the bigger problem is that when I look for chips to go with my sandwich.....there's nothing to be found. And that just pisses me off!
Do I actually have to hide the potato chips? LOL! I do have some empty storage bins in the garage. Perhaps they will have to go in there for now!
I have taken every ounce of sugar and sweet out of the house. I try to keep eggs in the refrigerator in case I need them for baking - that has become nearly impossible! (Remember the day he fixed 6 eggs for breakfast?)
I am going to start back in on Weight Watchers. I will be buying my own food, fixing my own meals. I am praying that he keeps his hands off of the WW items.....but I have a feeling that's not going to happen. It's funny because WW is rolling out a new plan next week and from what I've read, there will be more zero/free points food items. What amazes me is that no one believes that every item you put in your mouth has calories. Even if it's "free" - if you consume 3000 calories a day in "free" foods - you will gain weight!
I'm living with a guy who thinks everything is "free" food! And that he can eat an entire bag of potato chips in one setting. Or that he can continue to eat 3-4 drumsticks (ice cream) every single day. So I'm done.
But let's rethink this for a moment. He has the munchies. He is hungry all the time. Yet his stomach is not digesting the food. The doctor gave him some anti-nausea pills which are keeping him from vomiting. But the food is still sitting in his stomach undigested. This is called gastroparesis.
What are the complications?
Well isn't that great news??? His glucose is going to get even more out of control. And the bezoars? Heaven help him!
How to fix it?
Control glucose
Change diet
And the chances of that happening? Ok, we already know that's not going to happen.
For me, it's an ongoing education to try to stay one step ahead of his symptoms, what's causing them, whether there's anything I can do to help him and if I should mention it to him. But it doesn't consume my life. An hour or 2 of research a week. The rest of my days are spend living what I hope is a fairly normal life. And now adding in the gym and a weight watchers diet with meal planning - I might just be so busy I forget all about his diabetes. Until I hear him being sick.
To all the caregivers out there, whether it is diabetes of something else, my heart really does go out to you. I truly know what you are going through. I know there are tears and I know there can be great moments of joy with the one you love. There are moments when you want to walk away and times when you feel guilty for having those very thoughts. Periods of great anxiety and the same for being annoyed at the disease. It's not easy. Just take it one day at a time and when you can't do that, just take it one moment at a time. Do things for yourself. Take breaks. Read a book, watch a movie, go for a walk, eat your own ice cream while sitting in the car at the park (yep, I've done that a couple of times!) And pray. Ask the Lord to bless you. Don't wait for someone else to pray for you. Just pray for yourself. It does help!
Here's hoping that as your year winds to an end that there is peace in your life, joy in your heart and faith in yourself!
And to calvinnme, I will pray that your diabetes never gets as bad as what we're living with!
DW
Well, I'm a diabetic, not with nearly the problems your husband has - yet. Although I don't delude myself and say I'm normal as long as I take meds, I know the disease will progress, just hopefully more slowly. About his hunger, let me just say that many of us diabetics live in a "prison of hunger". It doesn't matter what he eats, his insulin by definition does not get used by his body effectively. So there he is, his blood awash in unusable insulin and sugar that will not go into the cells, so he might as well be eating cardboard. That is why he is so hungry. The thing is, and I'm sure you know this and he knows this too, is that weed makes you hungry. So he is just compounding the problem by using it. Maybe he is just in such a state that he would just rather check out mentally than anything else. It is a disease of hopelessness, since there really is no cure, just decline, no matter what the diabetic does. So I can imagine that nobody who has been through it as a caregiver ever on What's next?Thanks for writing. Yes, I understand the mechanics of insulin and the whys of his hunger. Yes, I know the weed is giving him the munchies and making him hungry. It doesn't make it right. It doesn't make it easy to live with.
In some ways, I am lucky. He's been around way longer than I ever anticipated. :) In other ways, being a first hand witness to the slow decline this disease causes in the body is horrifying. The good thing is that it's making me want to be healthier!
My sis and I started a chair yoga class today. Boy! Did I feel it! I realized just how out of shape I am. You can walk every day and still not use the same muscles you use in yoga. We also did some of the machines at the gym. I'll probably be dead tomorrow. Should I just say "goodbye" now? ha ha!
So, I went to the grocery last Wednesday to stock up for Thanksgiving weekend. On the spur of the moment, I bought a large bag of plain potato chips and a large bag of BBQ chips. I thought with all the leftover turkey and ham - it would be good to have some chips to go with sandwiches. I went to look for them tonight and they are both gone. I asked him and yes, he had eaten them! ALL OF THEM!!!
There is no budgeting food in his mind. No eating in moderation. No "save it for tomorrow" - that's for sure. But the bigger problem is that when I look for chips to go with my sandwich.....there's nothing to be found. And that just pisses me off!
Do I actually have to hide the potato chips? LOL! I do have some empty storage bins in the garage. Perhaps they will have to go in there for now!
I have taken every ounce of sugar and sweet out of the house. I try to keep eggs in the refrigerator in case I need them for baking - that has become nearly impossible! (Remember the day he fixed 6 eggs for breakfast?)
I am going to start back in on Weight Watchers. I will be buying my own food, fixing my own meals. I am praying that he keeps his hands off of the WW items.....but I have a feeling that's not going to happen. It's funny because WW is rolling out a new plan next week and from what I've read, there will be more zero/free points food items. What amazes me is that no one believes that every item you put in your mouth has calories. Even if it's "free" - if you consume 3000 calories a day in "free" foods - you will gain weight!
I'm living with a guy who thinks everything is "free" food! And that he can eat an entire bag of potato chips in one setting. Or that he can continue to eat 3-4 drumsticks (ice cream) every single day. So I'm done.
But let's rethink this for a moment. He has the munchies. He is hungry all the time. Yet his stomach is not digesting the food. The doctor gave him some anti-nausea pills which are keeping him from vomiting. But the food is still sitting in his stomach undigested. This is called gastroparesis.
What are the complications?
Gastroparesis can make diabetes worse by making it more difficult to manage blood glucose. When food that has been delayed in the stomach finally enters the small intestine and is absorbed, blood glucose levels rise.
If food stays too long in the stomach, it can cause problems like bacterial overgrowth because the food has fermented. Also, the food can harden into solid masses called bezoars that may cause nausea, vomiting, and obstruction in the stomach. Bezoars can be dangerous if they block the passage of food into the small intestine.
Well isn't that great news??? His glucose is going to get even more out of control. And the bezoars? Heaven help him!
How to fix it?
Control glucose
Change diet
And the chances of that happening? Ok, we already know that's not going to happen.
For me, it's an ongoing education to try to stay one step ahead of his symptoms, what's causing them, whether there's anything I can do to help him and if I should mention it to him. But it doesn't consume my life. An hour or 2 of research a week. The rest of my days are spend living what I hope is a fairly normal life. And now adding in the gym and a weight watchers diet with meal planning - I might just be so busy I forget all about his diabetes. Until I hear him being sick.
To all the caregivers out there, whether it is diabetes of something else, my heart really does go out to you. I truly know what you are going through. I know there are tears and I know there can be great moments of joy with the one you love. There are moments when you want to walk away and times when you feel guilty for having those very thoughts. Periods of great anxiety and the same for being annoyed at the disease. It's not easy. Just take it one day at a time and when you can't do that, just take it one moment at a time. Do things for yourself. Take breaks. Read a book, watch a movie, go for a walk, eat your own ice cream while sitting in the car at the park (yep, I've done that a couple of times!) And pray. Ask the Lord to bless you. Don't wait for someone else to pray for you. Just pray for yourself. It does help!
Here's hoping that as your year winds to an end that there is peace in your life, joy in your heart and faith in yourself!
And to calvinnme, I will pray that your diabetes never gets as bad as what we're living with!
DW
Thursday, November 16, 2017
What's next?
I often wonder "what's next" as I have never lived with a diabetic and most people who are at this stage in the progression of the disease simply don't write about it! So today's post is going to be about the daily trials of living with this disease.....when you are the healthy one!
Yesterday, he fixed SIX eggs for breakfast!!! Then he went to Burger King for lunch. THEN....he order Chinese takeout for dinner! I was gone most of the day and asked him what he'd eaten when I got home last night. In my mind, a normal person doesn't eat that much food in a day! He said he was hungry.
So what causes hunger at this point? I know he has told me that he can't taste or smell anything. And he doesn't eat like that every day....but he does eat a ton of food.....that he supposedly can't taste or smell.
He is up most nights sick to his stomach or with diarrhea. The gastroenterologist has refused to see him until he stops eating/smoking marijuana for 3 months. But I am assuming that the nerve endings in his stomach have stopped working, food doesn't get digested, and when it sits too long, it has to come up and get out one way or the other.
And I cannot talk to him about anything after 6 pm because that's when he starts eating his mj edibles and smoking his vaporizer. He is in a mj fog from that point on - but he says that it eases his pain and it's the only way he can get to sleep.
Sleep - that ever eluding issue. Most of acknowledge that as we age, we sleep less. I think it's a natural progression. He doesn't! He will turn his lights out at midnight, but says that he gets a couple of hours a sleep a night. I wake up often and will hear him in his bathroom. So I don't think he's sleeping much. He has fallen while getting out of bed twice this week, and we know from the last doctor's visit that his balance is really bad. I asked him if he wanted me to get a walker and set it next to his bed at night to help him get up. Well, we'll just say that was the wrong thing to ask and leave it at that!
In the mornings, he will sleep til 9:30. That is my absolute limit. If he is not up and moving by 9:30, I go in and check on him. Remember how you would lean over your baby and listen to see if they were breathing? Who knew you did that at this stage of life? But I have to.....I worry every morning until I hear him moving around. Yet at the same time, I know he needs as much sleep as he can get.
Daytime napping. It seems that more often than not when I go to his room to ask him a question, he is laying across the bed, dozing or sleeping. Probably more dozing than sleep.....but still, he is not doing anything. TV is on. Pups are curled up next to him.
Exercise. Nil. Nadda. Zip. He used to take the pups outside every 2 hours. We have a motion activated security camera outside and it records all movement. Yesterday, he took them out twice! And that is all the exercise he gets. Other than walking 20 feet from the bedroom to the kitchen. How an anyone function on that little movement?
He was sitting in his chair last night and I just happened to notice his stomach. It was very odd looking. I'm not sure, but almost bloated? And usually your stomach is quite soft while his was extremely hard. So something is going on....and I have no idea what....or what to expect next.
more on the distended diabetic stomach here
And then I think for a moment - if I ate everything that he ate yesterday, my stomach would probably look like that as well!
End Stage Renal Failure is a quandary to me. Uncontrolled diabetes is a mystery. His unwillingness to care for himself will forever befuddle me. I have learned that I can't ask him if it's his diabetes because he will become very defensive. I can't make a statement that the nerve endings in his stomach have probably died off o his stomach isn't processing what he eats....that will only wake up the rage inside him. I can only be sympathetic to his symptoms, offer to drive him to the doctor, tell him that I'm praying for him (and that often upsets him) or just remain quiet - which seems to be the path I take more and more.
As I sit here writing this at 7:47 am, I wonder if he made it through the night. I haven't heard him move yet this morning. But I remind myself that it's not 9:30 yet....I have to wait. And then I ponder if that is what I'm doing - waiting for life to end. Waiting for this horrible, horrific, terrible, awful disease to take it's toll? What have other's done when they were at this point and were the caregiver? Who did they turn to that might understand?
I can fully sympathize because when this is over, I think I will block it from my mind for the rest of my days. I can see where I wouldn't want to say another word about it, help another person, lend a sympathetic ear....I would just want to completely and totally erase it from my life forever. And that, I fear, is the main reason why there is so little support for those of us who are healthy caregivers living with a non-compliant diabetic who just doesn't care.
So I get up each day and have plans for my life. I'm probably gone too much, but I have to get away. I never cease worrying about him whether I'm here or not, so I might as well continue to live a productive life to the extent that I can. Always asking myself, "what's next?"
DW
Yesterday, he fixed SIX eggs for breakfast!!! Then he went to Burger King for lunch. THEN....he order Chinese takeout for dinner! I was gone most of the day and asked him what he'd eaten when I got home last night. In my mind, a normal person doesn't eat that much food in a day! He said he was hungry.
So what causes hunger at this point? I know he has told me that he can't taste or smell anything. And he doesn't eat like that every day....but he does eat a ton of food.....that he supposedly can't taste or smell.
He is up most nights sick to his stomach or with diarrhea. The gastroenterologist has refused to see him until he stops eating/smoking marijuana for 3 months. But I am assuming that the nerve endings in his stomach have stopped working, food doesn't get digested, and when it sits too long, it has to come up and get out one way or the other.
And I cannot talk to him about anything after 6 pm because that's when he starts eating his mj edibles and smoking his vaporizer. He is in a mj fog from that point on - but he says that it eases his pain and it's the only way he can get to sleep.
Sleep - that ever eluding issue. Most of acknowledge that as we age, we sleep less. I think it's a natural progression. He doesn't! He will turn his lights out at midnight, but says that he gets a couple of hours a sleep a night. I wake up often and will hear him in his bathroom. So I don't think he's sleeping much. He has fallen while getting out of bed twice this week, and we know from the last doctor's visit that his balance is really bad. I asked him if he wanted me to get a walker and set it next to his bed at night to help him get up. Well, we'll just say that was the wrong thing to ask and leave it at that!
In the mornings, he will sleep til 9:30. That is my absolute limit. If he is not up and moving by 9:30, I go in and check on him. Remember how you would lean over your baby and listen to see if they were breathing? Who knew you did that at this stage of life? But I have to.....I worry every morning until I hear him moving around. Yet at the same time, I know he needs as much sleep as he can get.
Daytime napping. It seems that more often than not when I go to his room to ask him a question, he is laying across the bed, dozing or sleeping. Probably more dozing than sleep.....but still, he is not doing anything. TV is on. Pups are curled up next to him.
Exercise. Nil. Nadda. Zip. He used to take the pups outside every 2 hours. We have a motion activated security camera outside and it records all movement. Yesterday, he took them out twice! And that is all the exercise he gets. Other than walking 20 feet from the bedroom to the kitchen. How an anyone function on that little movement?
He was sitting in his chair last night and I just happened to notice his stomach. It was very odd looking. I'm not sure, but almost bloated? And usually your stomach is quite soft while his was extremely hard. So something is going on....and I have no idea what....or what to expect next.
more on the distended diabetic stomach here
And then I think for a moment - if I ate everything that he ate yesterday, my stomach would probably look like that as well!
End Stage Renal Failure is a quandary to me. Uncontrolled diabetes is a mystery. His unwillingness to care for himself will forever befuddle me. I have learned that I can't ask him if it's his diabetes because he will become very defensive. I can't make a statement that the nerve endings in his stomach have probably died off o his stomach isn't processing what he eats....that will only wake up the rage inside him. I can only be sympathetic to his symptoms, offer to drive him to the doctor, tell him that I'm praying for him (and that often upsets him) or just remain quiet - which seems to be the path I take more and more.
As I sit here writing this at 7:47 am, I wonder if he made it through the night. I haven't heard him move yet this morning. But I remind myself that it's not 9:30 yet....I have to wait. And then I ponder if that is what I'm doing - waiting for life to end. Waiting for this horrible, horrific, terrible, awful disease to take it's toll? What have other's done when they were at this point and were the caregiver? Who did they turn to that might understand?
I can fully sympathize because when this is over, I think I will block it from my mind for the rest of my days. I can see where I wouldn't want to say another word about it, help another person, lend a sympathetic ear....I would just want to completely and totally erase it from my life forever. And that, I fear, is the main reason why there is so little support for those of us who are healthy caregivers living with a non-compliant diabetic who just doesn't care.
So I get up each day and have plans for my life. I'm probably gone too much, but I have to get away. I never cease worrying about him whether I'm here or not, so I might as well continue to live a productive life to the extent that I can. Always asking myself, "what's next?"
DW
Saturday, October 28, 2017
Life goes on, doesn't it?
Seven weeks since my son passed away. My life stopped for a moment. But there's been time to heal. Time to move on. I had been so worried about my other son and he finally came around. We spent a few days together creating a small memorial garden for the son who had died. We painted a bench, put up some decorative fencing, added huge stones, some gravel and a lot of plants. I had previously made fairy gardens in a little red wagon and in a child's sized wheelbarrow and we moved them into the memorial garden. We planted a dozen "forget-me-nots" and then painted a rock that said, "forget-me-not."
My son sat on the bench and cried his heart out. We had a private memorial...just the 2 of us. It was all quite healing. And it was good to see my son coming out of his grief.
Hubby has been quite compassionate and "normal". Oh - he is having plenty of lows and these days, when he starts to go low, he goes dead white so it's easier to recognize them. He had one today. He didn't give himself any insulin this morning as his sugars were at 110. He had breakfast. But at 2 pm, he was white as a sheet. So we ate. And then he was fine.
This just tells me that his glucose is still completely out of control. But at least I recognized it today. His attitude has been in check for the most part. His labs are not good, but they haven't declined in the last 2 months. OK, that's not entirely true. They seem to go down by 1 point each time he takes them which is monthly now. So in a year, we will look back and see what the overall changes have been. I swear the guy will eat 4 ice cream drumsticks a day!
And don't get me wrong. We have had our arguments, fights, battles....mostly over his glucose levels. And his diet. And his A1C. He thinks if it's at 9 and it stays at 9, he's doing great. I think I've gotten to the point where I just roll my eyes when he says something like that!
I still want to escape, to run away, to buy an RV and just travel anywhere but here. However I have noticed something in the past month....he wants to go everywhere I go. If I run to the bank, post office and grocery....he will go with me and sit in the car. Today we drove and hour to get to a shop I wanted to go to. He sat in the car. I asked him why. He said, "it's just as easy for me to sit in the car as it is to sit at home and I'm not alone." I have to wonder if he's starting to get afraid to be alone. He has often said that his biggest fear is that he will die alone.
And all I want to do is to be alone! LOL!
We have completed all of the paperwork on palliative care. We are waiting for the doctor to sign off on it and the nurse to return it. Have I written about that? Palliative care is fairly new. If he goes into a coma from a glucose low or high I do not call 911. I leave him where he is and if he doesn't come out within 30 minutes, I call palliative care. They will send a nurse out to the house and set up hospice care. If he wakes up, that ends until the next episode. But I am off the hook and do not have to call 911.
It had become a burden to me because he has always said that he doesn't want me to call 911. But I feel there's a responsibility that I shoulder....that I would not be able to explain why I didn't make that phone call if he died. Now....I have the paperwork that says I'm not to call 911. And that helps.
I was totally set back that he checked the block that he doesn't want any assistance at all. There was a separate block for tube feeding and he even declined that. I'm not so sure I agree with that but it is his choice. He probably wouldn't last long with no feeding, no fluids, no assist at all. As I understand it, we are among the first (and probably the few) who are setting this into place. But he has spoken at length with his doctor, the nurse and me and this is what he wants. At least I no longer have to struggle with the responsibility of making a call. (Yet I still think the automatic reflex is to pick up the phone and dial 911, so we will see how I do in the event something happens.)
I have gotten back to my art classes, to some genealogy research, and my days seem to be flying by. I ignore most of the hiccups that get in my way and just trudge along. Life does go on, even when you think it had stopped....it was just for a moment.
DW
My son sat on the bench and cried his heart out. We had a private memorial...just the 2 of us. It was all quite healing. And it was good to see my son coming out of his grief.
Hubby has been quite compassionate and "normal". Oh - he is having plenty of lows and these days, when he starts to go low, he goes dead white so it's easier to recognize them. He had one today. He didn't give himself any insulin this morning as his sugars were at 110. He had breakfast. But at 2 pm, he was white as a sheet. So we ate. And then he was fine.
This just tells me that his glucose is still completely out of control. But at least I recognized it today. His attitude has been in check for the most part. His labs are not good, but they haven't declined in the last 2 months. OK, that's not entirely true. They seem to go down by 1 point each time he takes them which is monthly now. So in a year, we will look back and see what the overall changes have been. I swear the guy will eat 4 ice cream drumsticks a day!
And don't get me wrong. We have had our arguments, fights, battles....mostly over his glucose levels. And his diet. And his A1C. He thinks if it's at 9 and it stays at 9, he's doing great. I think I've gotten to the point where I just roll my eyes when he says something like that!
I still want to escape, to run away, to buy an RV and just travel anywhere but here. However I have noticed something in the past month....he wants to go everywhere I go. If I run to the bank, post office and grocery....he will go with me and sit in the car. Today we drove and hour to get to a shop I wanted to go to. He sat in the car. I asked him why. He said, "it's just as easy for me to sit in the car as it is to sit at home and I'm not alone." I have to wonder if he's starting to get afraid to be alone. He has often said that his biggest fear is that he will die alone.
And all I want to do is to be alone! LOL!
We have completed all of the paperwork on palliative care. We are waiting for the doctor to sign off on it and the nurse to return it. Have I written about that? Palliative care is fairly new. If he goes into a coma from a glucose low or high I do not call 911. I leave him where he is and if he doesn't come out within 30 minutes, I call palliative care. They will send a nurse out to the house and set up hospice care. If he wakes up, that ends until the next episode. But I am off the hook and do not have to call 911.
It had become a burden to me because he has always said that he doesn't want me to call 911. But I feel there's a responsibility that I shoulder....that I would not be able to explain why I didn't make that phone call if he died. Now....I have the paperwork that says I'm not to call 911. And that helps.
I was totally set back that he checked the block that he doesn't want any assistance at all. There was a separate block for tube feeding and he even declined that. I'm not so sure I agree with that but it is his choice. He probably wouldn't last long with no feeding, no fluids, no assist at all. As I understand it, we are among the first (and probably the few) who are setting this into place. But he has spoken at length with his doctor, the nurse and me and this is what he wants. At least I no longer have to struggle with the responsibility of making a call. (Yet I still think the automatic reflex is to pick up the phone and dial 911, so we will see how I do in the event something happens.)
I have gotten back to my art classes, to some genealogy research, and my days seem to be flying by. I ignore most of the hiccups that get in my way and just trudge along. Life does go on, even when you think it had stopped....it was just for a moment.
DW
Friday, September 08, 2017
My youngest son
age 33. A lifetime of grand mal seizures that could not be controlled by medications. He had a major seizure, crashed on concrete, split his skull wide open. He was probably dead at the scene, but they kept him alive, put him on life support and he succumbed last night.
I am still simply numb. Can't think. Can't process it. Can't function. Completely unexpected. But it wasn't. I have known since the day he was diagnosed with this disorder that he would most likely die from a seizure caused accident. Still - you are never prepared.
I have another son who is 38 and when I told him, he was devastated. Beyond broken. So now I am very concerned that he might commit suicide. I could not handle that. I think I would simply stop breathing.
My son's seizures have an unknown etiology. They was no spike in his brain waves so he was never diagnosed with epilepsy. He was always on the highest dose of dilantin with other meds since he was 16....nothing ever controlled the seizures.
He had his first grand mal seizure when he was 8 months old. The day after he had his first DPT shot. Of course, we had not clue and continued to give him the series of DPT shots required. I have long suspected they are the cause of his seizure disorder as he was perfectly healthy prior to that day.
As he grew older, the seizures grew greater and the more meds they put him on to try and control them. The idea was to slow down the brain waves to prevent the seizures. But that also slows down every other brain function including learning. He never progressed beyond the IQ of a 5th grader. There was brain damage in some of the areas of his brain by the time he was 16. They could not tell me if the damage was due to the seizures, or if it had always been there and that's what caused the seizures.
When he was about 17, we were at Walmart. He had a seizure that caused his entire body to fall against a huge shoe rack and it tumbled over. The force of his body when he was in the middle of a seizure was always something to witness. He had no control. Most often he was unconscious while his body contorted and flew in every direction.
But now, all that is over.
I found out just how well my tear ducts work. I don't think I stopped crying for 24 hours after I found out he was on life support. He was about 1200 miles away and I could not get there before they were going to disconnect him. He is the child of a previous marriage and his father and 2 half sisters were with him. I was here with my other son.
Nothing in life is easy, but this was devastating. No one should lose their son. But I know it happens way too often. I am comforted that he is no longer in pain and that there will be no more seizures. My heart has been shattered and I know that I will never be the same. This makes diabetes look like a piece of cake. And yes, I know that it's not.
We have been remembering the funny little things he did as a child. Going through photos, pouring over memories. We will heal in time. But we will never be the same.
Please pray for my older son that he can pull through this. He is not responding to texts or phone calls. I am praying that he just needs some time alone.
I know I'm still in shock. I know the phases of grief. Perhaps if there is an ounce of good is that I am old enough and have gone through enough loss in my life that I understand what has to happen and I know what to expect. Not unlike grieving the loss of good health when one is diagnosed with diabetes or any other problem.
Much love to each of you. Hug those that you love. You just never know when it will be the last time.
DW
I am still simply numb. Can't think. Can't process it. Can't function. Completely unexpected. But it wasn't. I have known since the day he was diagnosed with this disorder that he would most likely die from a seizure caused accident. Still - you are never prepared.
I have another son who is 38 and when I told him, he was devastated. Beyond broken. So now I am very concerned that he might commit suicide. I could not handle that. I think I would simply stop breathing.
My son's seizures have an unknown etiology. They was no spike in his brain waves so he was never diagnosed with epilepsy. He was always on the highest dose of dilantin with other meds since he was 16....nothing ever controlled the seizures.
He had his first grand mal seizure when he was 8 months old. The day after he had his first DPT shot. Of course, we had not clue and continued to give him the series of DPT shots required. I have long suspected they are the cause of his seizure disorder as he was perfectly healthy prior to that day.
As he grew older, the seizures grew greater and the more meds they put him on to try and control them. The idea was to slow down the brain waves to prevent the seizures. But that also slows down every other brain function including learning. He never progressed beyond the IQ of a 5th grader. There was brain damage in some of the areas of his brain by the time he was 16. They could not tell me if the damage was due to the seizures, or if it had always been there and that's what caused the seizures.
When he was about 17, we were at Walmart. He had a seizure that caused his entire body to fall against a huge shoe rack and it tumbled over. The force of his body when he was in the middle of a seizure was always something to witness. He had no control. Most often he was unconscious while his body contorted and flew in every direction.
But now, all that is over.
I found out just how well my tear ducts work. I don't think I stopped crying for 24 hours after I found out he was on life support. He was about 1200 miles away and I could not get there before they were going to disconnect him. He is the child of a previous marriage and his father and 2 half sisters were with him. I was here with my other son.
Nothing in life is easy, but this was devastating. No one should lose their son. But I know it happens way too often. I am comforted that he is no longer in pain and that there will be no more seizures. My heart has been shattered and I know that I will never be the same. This makes diabetes look like a piece of cake. And yes, I know that it's not.
We have been remembering the funny little things he did as a child. Going through photos, pouring over memories. We will heal in time. But we will never be the same.
Please pray for my older son that he can pull through this. He is not responding to texts or phone calls. I am praying that he just needs some time alone.
I know I'm still in shock. I know the phases of grief. Perhaps if there is an ounce of good is that I am old enough and have gone through enough loss in my life that I understand what has to happen and I know what to expect. Not unlike grieving the loss of good health when one is diagnosed with diabetes or any other problem.
Much love to each of you. Hug those that you love. You just never know when it will be the last time.
DW
Monday, August 28, 2017
Horrible morning
I went to Walmart Friday and when I went to open the back seat door to put my groceries in the car, the entire door handle fell off! Yes....the ENTIRE handle! I just gasped! It was so unexpected and happened so easily. The Ford dealership was on the way home so I pulled in and the kid told me to bring it in this morning which I did.
Apparently, in the last recall, they replaced the rear door handles due to a recall and they didn't get the clip in right so the handle fell out. I think that recall was several months back. Anyway, they got it finished and called and hubby ran me over to get my car. We decided to meet at a local family run restaurant for breakfast.
Got there and I ordered. He ordered biscuits with gravy, but asked to substitute hash browns for the biscuits (it's on the menu that you can do that). Brand new waitress - I think it was her first day, so she asked him to clarify what he wanted and he repeated.
About 5 minutes later, she came back to the table and asked again for a clarification. Her supervisor was with her and I think she got it that he just wanted hash browns with gravy. I could see that he was getting agitated.
And then, she asked him to repeat his order AGAIN!!! Well, that did it, he threatened to leave, she and I tried to calm him down and she left to put the order in.
Of course, it came to the table - biscuits and gravy....with EXTRA biscuits! No hash browns. I just about died and he blew up. I mean, he literally just blew up. He was swearing at the waitress. She had brought the check and she wanted to take his food off it and he wouldn't let her.
I just sat there. Ever so quietly, I said, "why don't you just go home?" He just sat there not eating and then he said, " I can't eat, I'm sick to my stomach now." So I said, "then you need to just leave. I'll pay for this, just go." And he did.
I finished my meal and got up to go pay at the counter. And older woman who had been sitting behind us came up to the counter and said, "He is the most horrible man I have ever seen in my entire life." I should have just agreed with her, but instead, I said, "You never know what another person is going through." She said, "There is no excuse for his behavior." I just walked out. I did leave the poor waitress a nice tip. It's the least I could do.
And then I drove to my sister's. I could not come home. I told her what happened and she reiterated that she thinks it's time I leave. I agree. It is. But it probably won't happen right now.
I did finally come home. He didn't say a word to me. After a bit, I went to his door and told him that I needed to run to the bank and asked him if he needed anything while I was out. He said, "is something wrong? did I do something else?" I said, "No, it's the woman who came up to me after you left and said that you were the most horrible man she had ever seen." He said, "I had every right to get mad." I said, "yes, you had every right to get mad, but you had no right to respond the way that you did. It won't happen again, I've decided that we're not going out to eat for quite some time." He didn't say a thing and I left to run my errands.
He did have every right to be upset. Extremely upset. He told the waitress 5 times what he wanted and she still didn't get it right. But he had no right to throw a hissy fit - to act the way he did, or to say the things that he did. I cannot excuse his behavior. I should have just walked out when she couldn't get the order right after 3 tries. My mistake for staying. But in my defense....I was hungry! LOL!!!
So, it was about 9 am when all this happened. Was he still in his marijuana hangover??? Did he take his morning insulin? If not, was he low? I will never know. But something was way off. And I really don't know how much longer I can live with this.
No one should have to sit in a restaurant and watch their husband behave like a 3 year old throwing a temper tantrum. I have no plans to ever go out to a restaurant with him again. We can leave it to fast food drive throughs. I am so worn out. "Weary" is the term I said to my sister. I'm just "weary".
Second issue: Yesterday, I noticed that the fronts of his shins were red. There are 4 sores on his shins. I asked him if he had bumped into something and he said he didn't think so. I started doing some online research and it's probably poor circulation in his legs. But he said he's not going to the doctor for that. He really thinks he's just been bumping into things. Guess we'll keep an eye on his legs and see what happens.
Third: There are no guidelines for dealing with Stage 4/5 ESRD. Nothing for the caregiver. No helps. No inside scoop. No groups that I can find online for support. I am going to guess that by the time the end arrives, the caregiver is so exhausted they do not ever want to hear the word "diabetes" again in their lives. I am getting there at rapid speed. But I pray that what I write, what I go through, how I deal with these issues, the unanswered questions that I ask....that somehow, they might serve to help someone else going through the same or similar situation. God bless you if it's you. We all need a blessing!
DW
Apparently, in the last recall, they replaced the rear door handles due to a recall and they didn't get the clip in right so the handle fell out. I think that recall was several months back. Anyway, they got it finished and called and hubby ran me over to get my car. We decided to meet at a local family run restaurant for breakfast.
Got there and I ordered. He ordered biscuits with gravy, but asked to substitute hash browns for the biscuits (it's on the menu that you can do that). Brand new waitress - I think it was her first day, so she asked him to clarify what he wanted and he repeated.
About 5 minutes later, she came back to the table and asked again for a clarification. Her supervisor was with her and I think she got it that he just wanted hash browns with gravy. I could see that he was getting agitated.
And then, she asked him to repeat his order AGAIN!!! Well, that did it, he threatened to leave, she and I tried to calm him down and she left to put the order in.
Of course, it came to the table - biscuits and gravy....with EXTRA biscuits! No hash browns. I just about died and he blew up. I mean, he literally just blew up. He was swearing at the waitress. She had brought the check and she wanted to take his food off it and he wouldn't let her.
I just sat there. Ever so quietly, I said, "why don't you just go home?" He just sat there not eating and then he said, " I can't eat, I'm sick to my stomach now." So I said, "then you need to just leave. I'll pay for this, just go." And he did.
I finished my meal and got up to go pay at the counter. And older woman who had been sitting behind us came up to the counter and said, "He is the most horrible man I have ever seen in my entire life." I should have just agreed with her, but instead, I said, "You never know what another person is going through." She said, "There is no excuse for his behavior." I just walked out. I did leave the poor waitress a nice tip. It's the least I could do.
And then I drove to my sister's. I could not come home. I told her what happened and she reiterated that she thinks it's time I leave. I agree. It is. But it probably won't happen right now.
I did finally come home. He didn't say a word to me. After a bit, I went to his door and told him that I needed to run to the bank and asked him if he needed anything while I was out. He said, "is something wrong? did I do something else?" I said, "No, it's the woman who came up to me after you left and said that you were the most horrible man she had ever seen." He said, "I had every right to get mad." I said, "yes, you had every right to get mad, but you had no right to respond the way that you did. It won't happen again, I've decided that we're not going out to eat for quite some time." He didn't say a thing and I left to run my errands.
He did have every right to be upset. Extremely upset. He told the waitress 5 times what he wanted and she still didn't get it right. But he had no right to throw a hissy fit - to act the way he did, or to say the things that he did. I cannot excuse his behavior. I should have just walked out when she couldn't get the order right after 3 tries. My mistake for staying. But in my defense....I was hungry! LOL!!!
So, it was about 9 am when all this happened. Was he still in his marijuana hangover??? Did he take his morning insulin? If not, was he low? I will never know. But something was way off. And I really don't know how much longer I can live with this.
No one should have to sit in a restaurant and watch their husband behave like a 3 year old throwing a temper tantrum. I have no plans to ever go out to a restaurant with him again. We can leave it to fast food drive throughs. I am so worn out. "Weary" is the term I said to my sister. I'm just "weary".
Second issue: Yesterday, I noticed that the fronts of his shins were red. There are 4 sores on his shins. I asked him if he had bumped into something and he said he didn't think so. I started doing some online research and it's probably poor circulation in his legs. But he said he's not going to the doctor for that. He really thinks he's just been bumping into things. Guess we'll keep an eye on his legs and see what happens.
Third: There are no guidelines for dealing with Stage 4/5 ESRD. Nothing for the caregiver. No helps. No inside scoop. No groups that I can find online for support. I am going to guess that by the time the end arrives, the caregiver is so exhausted they do not ever want to hear the word "diabetes" again in their lives. I am getting there at rapid speed. But I pray that what I write, what I go through, how I deal with these issues, the unanswered questions that I ask....that somehow, they might serve to help someone else going through the same or similar situation. God bless you if it's you. We all need a blessing!
DW
Saturday, August 19, 2017
Diabetes - a death sentence
The last time I posted, we had just been to the nephrologist. I wrote this:
Could I have been in any more denial? I think it finally hit both of us that that's exactly what we did - we made up excuses to "prove" the doctor was wrong.
So what if he only has 3 - 5 more years before dialysis? And what if he still doesn't want dialysis. Is that a death sentence?
It sure makes you look at life a bit differently when there's a time frame put on what's left to it.
We have been talking a bit about what he might like to do, changes he would like to make, bucket list items to be done. Right now he says he doesn't want to change a thing. I'm fine with that. As long as he keeps his emotions, anger, reactions, etc., under control.
So a few more things have happened. The Nephrologist called and said that he had talked to the gastrointestologist who will not see him until he has been off all marijuana for 3 months. Because it could be the marijuana that is causing the nausea and vomiting. He said he would not do that as he has no other means of pain management. (which is true.)
I reminded him after 2 weeks that he needed to get his labs done. He has decided that he's not going to get labs right now.
What on earth am I supposed to do? Keep notes for one thing. Keep this diary going so that I can go back and remember why he didn't do labs when he was supposed to do them.
I suppose it's a catch 22. He's going to die. Why keep doing anything other than what makes you as comfortable as possible. I am NOT happy with his use of marijuana....but we happen to live where it is legal and there is not much I can do about it. I did tell him that I thought he should stop using it for the 3 months and see if it cures the vomiting. At the moment - he'd rather put up with the vomiting. I wonder what will happen when he rips his esophagus out? I just shake my head. He is such a brilliant man.....until it comes to something like this.
At least he told the nephrologist that he was using marijuana so that is finally in his medical record. Mostly edibles.
The coughing continues. About the same. Dry hacking type cough.
Just got back from spending a 2nd 3-day visit with my sister who's husband has lung cancer. He just started chemo via a pill. Diarrhea which is "chemical waste" so she has to dress like a hazmat crew to clean it up while protecting herself. There are some things much worse than diabetes.
DW
Gave him 3-5 years before he will need dialysis. That's interesting because only 2 years ago he was told that he needed dialysis then. I think this just confirms to me that labs really can't forecast what you do and don't need as they can quickly change for the good or the bad.
Could I have been in any more denial? I think it finally hit both of us that that's exactly what we did - we made up excuses to "prove" the doctor was wrong.
So what if he only has 3 - 5 more years before dialysis? And what if he still doesn't want dialysis. Is that a death sentence?
It sure makes you look at life a bit differently when there's a time frame put on what's left to it.
We have been talking a bit about what he might like to do, changes he would like to make, bucket list items to be done. Right now he says he doesn't want to change a thing. I'm fine with that. As long as he keeps his emotions, anger, reactions, etc., under control.
So a few more things have happened. The Nephrologist called and said that he had talked to the gastrointestologist who will not see him until he has been off all marijuana for 3 months. Because it could be the marijuana that is causing the nausea and vomiting. He said he would not do that as he has no other means of pain management. (which is true.)
I reminded him after 2 weeks that he needed to get his labs done. He has decided that he's not going to get labs right now.
What on earth am I supposed to do? Keep notes for one thing. Keep this diary going so that I can go back and remember why he didn't do labs when he was supposed to do them.
I suppose it's a catch 22. He's going to die. Why keep doing anything other than what makes you as comfortable as possible. I am NOT happy with his use of marijuana....but we happen to live where it is legal and there is not much I can do about it. I did tell him that I thought he should stop using it for the 3 months and see if it cures the vomiting. At the moment - he'd rather put up with the vomiting. I wonder what will happen when he rips his esophagus out? I just shake my head. He is such a brilliant man.....until it comes to something like this.
At least he told the nephrologist that he was using marijuana so that is finally in his medical record. Mostly edibles.
The coughing continues. About the same. Dry hacking type cough.
Just got back from spending a 2nd 3-day visit with my sister who's husband has lung cancer. He just started chemo via a pill. Diarrhea which is "chemical waste" so she has to dress like a hazmat crew to clean it up while protecting herself. There are some things much worse than diabetes.
DW
Tuesday, July 25, 2017
The Nephrologist
Yesterday we drove 3 hours to visit a nephrologist. Kidney specialist. I liked the doctor. He spent 2 hours with us. I don't know that the hubby will do anything he was told to do, but he will now get labs done every quarter. That's great.
The doc changed some of the meds, added some new ones. Gave him some anti-nausea meds. Said that he probably has gastroparesis (which I thought might be the case) and that's what's causing him to vomit so much.
His GFR has improved from zero in 2011 to 44 which is incredible. Is is the marijuana? I've read that it helps treat kidney disease and diabetes.
The main problem is the protein in the urine. 30 is good. 300 is horrible and he was at 2300, but it is now down to 1100. Still extremely bad. The kidneys simply are not functioning properly. His BUN has also increased. So more meds for that. Wants him to stop diet coke. Wants him to drink a gallon of water a day to keep the kidneys hydrated. That probably won't happen.
Gave him 3-5 years before he will need dialysis. That's interesting because only 2 years ago he was told that he needed dialysis then. I think this just confirms to me that labs really can't forecast what you do and don't need as they can quickly change for the good or the bad.
As an aside, he apologized for the other day and agreed that it wouldn't happen again. He doesn't want to split up. Again - more evidence of the non-stop roller coaster ride in my life. I pray that these drug changes can smooth out the emotional ups and downs he is experiencing.
Life will never be normal. I just try to get through one day at a time. I'll be gone the rest of the week as my brother-in-law has just been diagnosed with lung cancer and I'm going to go visit them for a few days.
DW
The doc changed some of the meds, added some new ones. Gave him some anti-nausea meds. Said that he probably has gastroparesis (which I thought might be the case) and that's what's causing him to vomit so much.
His GFR has improved from zero in 2011 to 44 which is incredible. Is is the marijuana? I've read that it helps treat kidney disease and diabetes.
The main problem is the protein in the urine. 30 is good. 300 is horrible and he was at 2300, but it is now down to 1100. Still extremely bad. The kidneys simply are not functioning properly. His BUN has also increased. So more meds for that. Wants him to stop diet coke. Wants him to drink a gallon of water a day to keep the kidneys hydrated. That probably won't happen.
Gave him 3-5 years before he will need dialysis. That's interesting because only 2 years ago he was told that he needed dialysis then. I think this just confirms to me that labs really can't forecast what you do and don't need as they can quickly change for the good or the bad.
As an aside, he apologized for the other day and agreed that it wouldn't happen again. He doesn't want to split up. Again - more evidence of the non-stop roller coaster ride in my life. I pray that these drug changes can smooth out the emotional ups and downs he is experiencing.
Life will never be normal. I just try to get through one day at a time. I'll be gone the rest of the week as my brother-in-law has just been diagnosed with lung cancer and I'm going to go visit them for a few days.
DW
Friday, July 21, 2017
I'm so tired of all of it!
Think about my last post. He dropped his concentrated humbling by 75%. i should have anticipated problems.
Highs. Lows. Rollercoaster emotions. Outbursts. Sleeping. We've had it all these past few weeks.
Today he got physical in his rage. He grabbed me. Tried to prevent me from going through a door. After he calmed down I explained that was a red line for me. I explained that he will never touch me again when he is angry. And if a single bruise appears, I will report this incident to the police.
He wants me to sell the house. I won't. He wants to separate which is fine with me, but he has to be the one who leaves.
I'm pretty sure he will apologize in a couple of days as usual, but if he doesn't, I'm fine with that.
Something pretty much died today when he grabbed me. We will see if we can recover from this one, but the man seriously needs help.
And I have to ask myself if he was loaded on marijuana. He is a serious user and I don't think that helps a thing when his insulin gets so out of whack.
He is not well. He is so angry. Nothing makes him happy. And I know he physically hurts and constant pain can make you crazy. What he has to understand is that he cannot take it out on me.
I left and went to my sisters for a few hours. Gave him time to cool down. I will give this a couple of days and see if he's serious about leaving, but there's going to be an understanding that threats and anything physical are off the table. Just not allowed ever under any circumstance.
We just found out that my brother-in-law has lung cancer and may not have a year left. I really don't know what triggered today's outburst but it always seems to happen when I least expect it and I'm so tired of it. At least give me some hint that an explosions about to happen!!!
DW
Thursday, June 29, 2017
Dropping insulin again
Last night, he told me he is now taking 10 units in the morning and 10 at night. Two weeks ago, he was taking 40 units each. That is a substantial drop....paralleling his drop in food intake.
(remember he uses Humulin R U 500 which is a concentrated insulin that is 5 times the normal insulin).
He has to drop the insulin in order to prevent the severe lows.
Yet he is only testing morning and evening. He still refuses to prick before and after meals. Said that his glucose is running between 120 and 240. Hmmm.
His crashes - he goes down to 40 or lower.
I need to keep current with this type of posts so that there's a record of the changes. He does not seem to have lost any more weight. But it's possible that because I see him every day, I'm not noticing. He says he hasn't lost any more.
DW
(remember he uses Humulin R U 500 which is a concentrated insulin that is 5 times the normal insulin).
He has to drop the insulin in order to prevent the severe lows.
Yet he is only testing morning and evening. He still refuses to prick before and after meals. Said that his glucose is running between 120 and 240. Hmmm.
His crashes - he goes down to 40 or lower.
I need to keep current with this type of posts so that there's a record of the changes. He does not seem to have lost any more weight. But it's possible that because I see him every day, I'm not noticing. He says he hasn't lost any more.
DW
Monday, June 26, 2017
Palliative care and loss of appetite
It's summer and life is in full swing. I'm keeping quite busy but thought it was time for an update on the diabetes front.
We had an interesting visit with a palliative care nurse from our HMO. Palliative care is pre-hospice. We had gone to see the Endocrinologist and I asked a simple question: Who do I call if he goes into a coma?
He does not want to go to a hospital. He does not want dialysis. He does not want a kidney transplant. So when something happens, who do I call?
By having palliative care set up - I can now simply call Hospice and they will take over his care if he is in a coma. Here at home.
He has his periods when he is doing just fine. I think he will live to be 90 years old! But then there are other times like now.
He is not eating. He's lost his appetite. So he was having middle of the night sugar crashes with intense cramping. Because he was still taking his full insulin levels....while not eating.
He has cut his insulin in half. (Humulin R U 500 concentrated). Was at 40U each at morning and night, now at 20U each at morning and night. His Endo told him he could adjust by 20%. He's adjusting 50%. I think he needs a return visit. Not part of his agenda.
He lost about 20 pounds, but nothing since. Eating half of what he did and not losing weight. Those numbers don't add up.
We are finally seeing a Nephrologist the end of next month. Only took 6 months to get in. Sigh.
Adjusting the Humulin has stopped the night time lows. That's good. He said he is working to get himself back on even keel. I wonder if that's possible. With no appetite, he no longer wants to go out to eat. He has no joy in cooking so that is falling more and more on my shoulders. But if he doesn't want to eat, what do I fix? Interesting quandary.
He seems to still like ice cream drumsticks. Can one live on those? Probably not!
Am I concerned? Of course I am! What can I do? Not much at the moment. It is his decision to seek medical advice - to go see his doctor. I recommend it just about every day. And he declines. He is still making the decisions about his life. I watch and I wonder. :)
So I try to live as normal a life as I can. What is normal at this point? I'm content with gardening and art classes for now. He is holding his own and I really think he will bounce back out of this....but at the same time I'm trying to prepare both of us for the next phase of this disease.
DW
We had an interesting visit with a palliative care nurse from our HMO. Palliative care is pre-hospice. We had gone to see the Endocrinologist and I asked a simple question: Who do I call if he goes into a coma?
He does not want to go to a hospital. He does not want dialysis. He does not want a kidney transplant. So when something happens, who do I call?
By having palliative care set up - I can now simply call Hospice and they will take over his care if he is in a coma. Here at home.
He has his periods when he is doing just fine. I think he will live to be 90 years old! But then there are other times like now.
He is not eating. He's lost his appetite. So he was having middle of the night sugar crashes with intense cramping. Because he was still taking his full insulin levels....while not eating.
He has cut his insulin in half. (Humulin R U 500 concentrated). Was at 40U each at morning and night, now at 20U each at morning and night. His Endo told him he could adjust by 20%. He's adjusting 50%. I think he needs a return visit. Not part of his agenda.
He lost about 20 pounds, but nothing since. Eating half of what he did and not losing weight. Those numbers don't add up.
We are finally seeing a Nephrologist the end of next month. Only took 6 months to get in. Sigh.
Adjusting the Humulin has stopped the night time lows. That's good. He said he is working to get himself back on even keel. I wonder if that's possible. With no appetite, he no longer wants to go out to eat. He has no joy in cooking so that is falling more and more on my shoulders. But if he doesn't want to eat, what do I fix? Interesting quandary.
He seems to still like ice cream drumsticks. Can one live on those? Probably not!
Am I concerned? Of course I am! What can I do? Not much at the moment. It is his decision to seek medical advice - to go see his doctor. I recommend it just about every day. And he declines. He is still making the decisions about his life. I watch and I wonder. :)
So I try to live as normal a life as I can. What is normal at this point? I'm content with gardening and art classes for now. He is holding his own and I really think he will bounce back out of this....but at the same time I'm trying to prepare both of us for the next phase of this disease.
DW
Friday, May 05, 2017
Midnight cramps
He is losing his sense of taste.
He is losing weight as he is not eating.
Last night he had severe cramps in his feet and legs. He could not get out of bed. His cell phone had fallen to the floor and he could not call me. Then he had a sugar crash - due to anxiety? He said that he finally managed to get up, take some glucose tabs, walk around and started getting better. But he didn't sleep at all.
So today, he is exhausted, scared, frustrated, upset and hurting. I suggested a call to his doctor and he declined. So I'm keeping busy outside with gardening (tis the season!) and trying to keep things quiet for him.
I feel so bad for him. Yet I know there's nothing that can be done. I think if he'd call his doctor, they might do something for his pain. But if he won't call the doctor - what can you do?
Tuesday he had his eye exam. The cataracts are growing, but they didn't think a surgeon would touch him (he has cornea transplants in both eyes). They are fitting him with a new contact lens that is deeper and larger in the hopes that it will stay in his eye and not pop out. Then he just waits until the cataracts cause enough problem that they have to try surgery.
He had labs done that day, but he's refusing to look at them. Sigh. I would at least like to know if things are the same....but he doesn't want to know. So I'll wait and see if the doctor calls him to come in for a visit.
Life with a non-compliant diabetic is not fun, that's for sure. I know - I'm such a bundle of joy today! So - on the happy side of life - I'm busy with 2 watercolor classes. Have 2 fountains and the pond up and running. Am putting up a decorative fence around the front yard. And the list of things that I need to get done is a mile long so plenty to keep me outside as long as the weather holds nice.
I think gardening and painting balance out the sickness in the house. Life is good!
DW
He is losing weight as he is not eating.
Last night he had severe cramps in his feet and legs. He could not get out of bed. His cell phone had fallen to the floor and he could not call me. Then he had a sugar crash - due to anxiety? He said that he finally managed to get up, take some glucose tabs, walk around and started getting better. But he didn't sleep at all.
So today, he is exhausted, scared, frustrated, upset and hurting. I suggested a call to his doctor and he declined. So I'm keeping busy outside with gardening (tis the season!) and trying to keep things quiet for him.
I feel so bad for him. Yet I know there's nothing that can be done. I think if he'd call his doctor, they might do something for his pain. But if he won't call the doctor - what can you do?
Tuesday he had his eye exam. The cataracts are growing, but they didn't think a surgeon would touch him (he has cornea transplants in both eyes). They are fitting him with a new contact lens that is deeper and larger in the hopes that it will stay in his eye and not pop out. Then he just waits until the cataracts cause enough problem that they have to try surgery.
He had labs done that day, but he's refusing to look at them. Sigh. I would at least like to know if things are the same....but he doesn't want to know. So I'll wait and see if the doctor calls him to come in for a visit.
Life with a non-compliant diabetic is not fun, that's for sure. I know - I'm such a bundle of joy today! So - on the happy side of life - I'm busy with 2 watercolor classes. Have 2 fountains and the pond up and running. Am putting up a decorative fence around the front yard. And the list of things that I need to get done is a mile long so plenty to keep me outside as long as the weather holds nice.
I think gardening and painting balance out the sickness in the house. Life is good!
DW
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