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

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

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:
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

Tuesday, November 28, 2017

Calvinnme wrote:

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