Saturday, May 03, 2008

Why do I stay?

L wrote:

"May I ask, honestly, why you won't consider leaving permanently?

You are very frank in your blog about your unhappiness and your husband's inability to change his ways. It sounds like you are really a different person being apart from him.

What keeps you there? Is it shared history? Religion? A fear of how he will manage without you?"

Well, in all honesty, I have truly, deeply, honestly considered leaving him. More than once. And it was a huge part of my extended 3 week vacation right now. I needed time to think and come to a turning point in my life. Religion has no part in this. Fearing how he will manage without me isn't a consideration either. Shared history is a big part. Love is a huge factor. I truly do love him. When he is "normal" he is a complete delight to be around. When I have the man I fell in love with....I am at my happiest.

And for now, the times that he is still "here" are worth staying for. I is blind! LOL!

I think what I have learned these past 3 weeks is that yes, I need to take care of the caregiver (me). I need to take a few more breaks. I need to develop a little more of a career/job/occupation for me. I don't know if that will be in art...or if I will return to the workforce. But I need to do something to have a goal, or a reason to be busy a little bit more.

Aren't we all different when we are away from our spouses? I know I'm more rested. I do believe I'm finally over my pneumonia. My chest feels fine....not tight like it was. No wheezing sounds. It's warm here and I've been out walking as well which is great. I forget how much I miss walking when I get cooped up inside the house during the winter snow months. And I've been surrounded by great friends, lots of creative play, loads of smiles and warm hugs, happy reunions and such.

I'm going home tomorrow and I'm going to stay. But somehow, I feel in my bones that things are going to be different. Maybe they have to be. And I can hear a little something in his voice. He had a sneezing attack yesterday and really hurt his ribs again, so he took another pain made him loopy again. Today, he said he wanted me to come home and tell him if he was ok or not. I told him that from the sound of his voice alone, I could tell that he still had the drugs in him and I asked him to not take another one of them until after I got home. Do not need him driving to the airport under the influence of something so strong. 22 hours after he took the pill, he was still slurring his words. Truly scary.

But my saving grace is the fact that I do know I can walk out any time. I won't do it on the spur of the moment. I will take another break and seriously think about it. But I do have that option. Every single one of us has that option every day of our lives. And I can stay another day knowing that I have that option.


Thursday, May 01, 2008

Surviving vs Living

I thought the comment that ended in "we all survive" was so interesting. It got me to thinking about this. Yes, I do know that as spouses of diabetics...we all survive. But do we live?

I've got just a few more days before I go back home. I have been "living"......TRULY living....for the first time in a long time, while here. I haven't had to listen to his angry outbursts. No one has been flopping their body in my bed at night. No sleep apnea with all it's gasps for air. I haven't woken up in the middle of the night for a single thing. Haven't seen a needle, a pricker, any prescription bottle.....

I have been living.

And it's been wonderful.

I don't want to go back to "surviving". I want to continue "Living".

But I know if I go back to him, which I will do, I will go back to just surviving.

I do feel renewed. And I'm hoping it will last a few weeks!

I will probably go into a depression and a deep funk when I get back. You all will have to pull me out of it! :o)

For the moment....I'm going to enjoy the heck out of the next few days!!!

Wednesday, April 30, 2008

How to contact me

Anonymous. I was starting to worry and am glad you signed on. But I understand, it is a huge risk.

My whole blog is a HUGE risk on my part and it's a very big part of why I do so much to keep my ID hidden. If my hubby could ever prove this was me (like he is going to go search the net regarding non compliant diabetics???) he would kick me out in a heartbeat! And probably threaten me in the process.

A few of my close friends know about this blog. No one else in my immediate life. can email me :

I will check there about once a week to see if I have any notes. And I can share my telephone number that way.

I get tons of anonymous emails, so be sure to let me know who you are!

And anyone can create an email acount via yahoo. I know many do not like to use yahoo....but it really is a safe way to email via the internet in an anonymous fashion.

I know that talking...just hearing another voice, does matter. Knowing that we are not alone...that there are others who share our same fears and concerns, hearing their stories....does help.

I think in the 2 years that I have blogged here, only one other spouse has posted that they stayed with the diabetic until death. I can certainly understand why. It is not an easy journey.

And yes, I know you love him. Just as much as I love mine. But love does not make this an easy life at all. It doesn't ease the pain...if anything, it might make it more difficult to sit there and watch the person you love so much let their life go one cell at a time because they won't follow the rules!

I had dinner last night with a very special friend of mine. He used to be my church choir director. He is a diabetic. He said about a year ago he got so frustrated with all the meds that he quit them cold turkey. His sugar went up to 600!!! I just about came unglued! I told him everything that was going on with my husband and said, "Do you want to be walking around in depends all day long in 6 years???" I could see in his eyes that the "light" was turned on. I think he made some life changing choices last night. It was the first time I had told anyone about my hubby's depends. But I do not want another person to go through this. He is 6 years younger than my husband.

I feel my blood pressure going up just thinking about it! LOLOL!

I think I'm almost ready to go home! 3 more days of teaching classes and shopping, resting by the seashore. It's all been amazingly wonderful!!!


Monday, April 28, 2008

Researching insulin pumps

I guess I should share some of my past "medical research" history. I raised a son who was a severe asthmatic before internet access....and a son who had a severe seizure disorder. In the days before patient advocates. I was their only advocate and spent hours in medical libraries doing research on both their medical conditions. And simply asking pointed questions to their providers in order to get them to think about proper treatment plans.

So I've done the research on this as well. And when someone who provides medical equipment wants to post that 100% of thier patients have had success with their pumps....I will simply hit the "reject" button.

Why? Mainly because I want to hear from the SPOUSE....NOT the patient...that it was a success!

Have I learned my lesson with this disease or what? Non-compliant diabetics are in such denial they will claim success with anything and everything! So if you are a provider....take note, start surveying the spouses. IF the patient even still has a spouse! Talk to the children, How about co-workers? A much better judge of "success" than the patient.

And "Joel", I have an MBA. I know full well that you can make statistics say anything you want. :o) My hubby has a perfect a1c because he has enough highs and lows during a 24 hour period that they balance out to a normal average. So much for numbers!

to quote part of what you wrote, "Diabetes is just a word, not a sentence". I disagree. Diabetes IS a sentence. Every remaining moment of your life totally depends on whether you choose to be compliant or non-compliant. Your moods, your anger, your all completely controlled by whether you manage your highs and lows, or choose not to manage them. Diabetes in a non-compliant person is truly a sentence for their spouse and their family.

Anonymous: Yes, it probably is too late for an insulin pump for hubby. If you took one look at his feet, you would wonder how he has managed to escape amputation to this point. Again, hubby refuses to test even once a day. He will only test when he "thinks" he is high. Sigh.

Christine. I think from my research, you are right on. Thank you fo rposting what you wrote. My hubby is not willing to do any o fthis. Perhaps his physicians recognize this and it's why they do not push him to get a pump. Count carbs? He would just guess and enter a number. So I agree, he would be worse off doing things like that.

I know many of you do not believe me, but I am seriously trying to paint a picture of what life is like with a totally non-compliant diabetic. I'm sure each one is different. But I'm getting enough comments from other spouses to start to think there are quite a few common threads that we all experience. Perhaps it's just a whole different world trying to live with someone who is non-compliant. Probably much like an alcoholic who won't quit drinking and is drinking himself to death.

Today, he was in a pretty foul mood on the phone. I could tell he's not doing well. So I'm glad I'm still on "vacation" and don't have to deal with his moods. I'm almost dreading going home. 5 more days of peace and quiet. I'll enjoy every moment of what's left!

Now, you also need to remember that I have a husband who's test strips...the Rx dated 2001!!! That should give you a clue as to how often he will test himself. To even think that he might test once a day? let alone 6 - 8 times a day.....simply put....insane! He is NOT about to do that. So how could putting him on a pump work? It would truly have to be 100% maintenance free. Testing equals maintenance.

insulin pumps

I thought I'd write about them today. My hubby does not have one and REFUSES to get one. Why?

They require "work".

They are not 100% maintenance free.

It is an outward sign of anotherwise unseen disease.

It is an admission that you have this disease, so you really can no longer deny it.

Now remember, this is a man who will tell you that diabetes is a disease of the pancreas AND NOTHING ELSE!!!

And although his kidney function is down to 25%....he will repeat over an over that this is NOT diabetes because diabetes only impacts the pancreas.

He truly is brilliant at finding ways to deny there is anything wrong with him at all. And I do have to giggle....ok, admit it...what guy ever admits his own faults? And I'm sure my hubby sees his low functioning kidneys as a "fault".

And once again, I cannot make life choices for him. He has to do them himself. He has heard the advice of his doctors. He refuses to accept what they tell him is best for him. So no pump for now for all the reasons above. I'm living with a man who has made a choice to die, to live the remaining time he has the way he wants, gobbling down one bag of potato chips and chasing that with a bag of chocolate!

How sad is that?

Sunday, April 27, 2008

A joyful day!

I started out getting early to the store where I am teaching while on "vacation". And the owner gifted me with a craft tool that retails for $150.00! What a great way to start my day!

I've taught at this store before and today, the class was filled with women who I've met in the past. So it was nothing short of a grande reunion.

Then 3 more "old" pals showed up to interrupt the class with so much fun, my jaws still hurt from smiling!

I used to live in this city and have been gone for quite some it's always fun to come "home" and see so many of my friends. Women who knew me "pre diabetes". Women who are very blunt about asking me about the dark circles under my eyes....and rather than explaining.. I just laugh and tell them it's my old age!

There was so much joy today. Such a nice change. So refreshing. So uplifting to know that I can still find this in my life. Truly helps to renew the spirit and refresh the soul!

Joy. Have you found it lately?