Saturday, June 09, 2018

Day in and day out - life goes on

Have I become numb to living with diabetes?  And is that just ok?  Sometimes I wonder!  My sister was here yesterday and our truck was done at the shop.  He comes out and asks me if I want to take him to get it.  I said, "when we're done with our visit."  I thought my tone was pleasant - I was enjoying my sister's company.  He immediately turned snarky and said, "you don't have to if you don't want to." and walked out the door to the mail box.

I looked at my sister with nothing but sorry in my eyes.  Sorrow that she had to see him get in a snit because I didn't jump at his command!  But she knows - she gets it.  He came back in the house and I said, "would it be ok if I take my sister to lunch, then home, and when I get back we can go get the truck?"  and he said "whatever" in his snarky voice and stomped off to his room.

Such a 10-year-old snit - not getting what he wanted the moment he wanted it.

Was he in a bit of a sugar low?

Not too long ago, his glucose went down to 50.  We were out camping.  It was 2:30 am.  I woke up to him falling back onto his bed.  I asked what was wrong.  He told me his sugar was down to 50 and asked if I had tootsie rolls.  Of course, he already knew that I did - that was his way of telling me he wanted me to get them for him.  I said, "where are your glucose tabs?"  He said, "in the truck".  So of course I got up and got him the tootsie rolls and saw that he had just ate a banana.

And then I was awake the rest of the night and yep, he went right back to sleep.  I was awake wondering in my head- what if I hadn't gone to the grocery just that morning and brought back bananas and tootsie rolls along with the other groceries.  What if I didn't have anything sweet at all in the travel trailer?  I would have had to put my clothes on, go out to the truck, find his glucose tabs?  Why couldn't he pre-plan for this?  Why hadn't he brought his glucose tabs back to the trailer?  WHAT IS WRONG WITH HIM???

And I keep going back to the single thought - not my disease.  But I doubt he will EVER take care of himself.

Is he getting a touch of dementia.  Diabetics with this late stage kidney failure can do that.  Is he getting a touch of alzheimers?  That can happen as well.  What are the signs and symptoms that I need to be looking for?

His gastroparentesis continues to develop.  His stomach has times when it is so bloated an brick hard.

His upper legs are "blown up" and brick hard.  I googled that.  Lipohypertrophy.  Don't you just love adding words to your vocabulary?  He's switched to injecting in his stomach.  2 times a day, 365 days per year, 14 years.....10220 injections.  Something was bound to happen.

And I know that he is a prime candidate for a heart attack or stroke.  In my last post - 2 months ago, he had had his labs.  His doc called and wanted him to have an ultrasound done because his BUN is high.  36.  But remember, it's been as high as 63 in the past.  The doc said that there might be a tumor in his kidney.  So he scheduled an ultrasound and that doc told him that he needed a CT scan first.  Hubby emailed his nephrologist thinking this new doc, a subcontractor to our insurance company, might be trying to rip off our insurance company with unnecessary tests.  He's not heard back from the nephrologist.

I'm not pressing this issue.  I doubt there's a tumor anywhere.  It's just an elimination step in the process.  They need to eliminate that possibility before moving on.  My research shows me that you can also have an increase in your BUN if your heart is not working.  It's not pumping enough blood through the kidneys to filter (clean) the blood.  

It's almost a catch 22 situation.  The heart doesn't pump enough blood through the kidneys to filter it.  So the toxins (protein) stay in the blood and accumulate to a higher level.  The damaged kidneys already are having trouble filtering the blood and now the heart isn't pumping hard enough to allow the kidneys to do their job.

But what would they do for his heart?  When he had his bypass surgery 9 years ago, they wanted to do 5 bypasses and could not find enough healthy veins and only did 3.  He didn't grow new healthy veins in the past 9 years with his A1c going from 9 to 12 and back down to 8.  I doubt they could do bypass surgery and he's said he will never go through that again.  I'm pretty sure his kidneys would fail since they failed with his last surgery.  I'm not sure his kidney function would allow them to do surgery at this point.

So why get the ultrasound done?  And I think that's where he's at with everything.  He simply has to know his prognosis....or be in such intense denial that it's a protective denial.

Those of us as family members, as caregivers, are the ones who truly suffer the most.  It's hard to deny anything when your spouse is having a sugar crash and needs candy, glucose tabs...whatever.  You just go into an automatic pilot mode and do what's necessary and then spend the rest of the night wide awake while they get their sleep!  Almost funny!  But not quite....

I know it's getting close to the end for him.  On the other hand, I could easily go first.  We have been camping and are planning more trips.  It keeps us busy.  Hopefully we are leaving in a week and will have a 3-week long adventure with some ocean time.  I find when we are camping, I take long afternoon naps.  I take long morning walks.  I enjoy nature.  I come home rested.  It's what I need at this phase of our lives.

DW

Friday, April 20, 2018

labs and kidney ultrasound

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 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

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

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

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?


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