A good break

I'm having an amazing weekend. My sis came over to visit and I have just hosted a charity event in my studio. So many female friends....so much understanding....so much fun.

I didn't realize how much I needed to do something like this....reach out and help someone else who is disabled in a completely different manner than diabetes.

And hubby has tolerated our 5 house guests quite well.

But I wonder if we are getting close to daytime depends. He was doing something a couple of times this weekend where he had to run to the bathroom and the sounds I heard, I knew it was diahrrea. And if I can hear it...then all my houseguests can hear it as well. I wasn't embarrased at all, but a couple of them were. I guess when you live with it, you get used to it and then you forget what someone else might think when they hear it.

So do I quit having friends over? Do I explain to them how seriously ill he is? Do I just ignore it and act like no one else can hear it? Do I turn the stereo on so loud no one will hear it?

Is it just another step in the process? I think I finally realized the truth about why we no longer go to movies. He can't sit through one. Will we stop going out at all because he needs to get to a restroom in a hurry? Or will he wear depends in the day? And my next question...if you have diahrrea that bad....you still need to be near a bathroom...even with depends on. How does one handle that?

I think perhaps my greatest fear is that he will be housebound. Oh what am I thinking? If he goes on dialysis...we won't be traveling anywhere.

More loss. More steps to grieve. More changes.

More reasons to enjoy weekends like this!

Current kidney function

He had it tested this week and it has not decreased any more. That is wonderful news!

So they are going to increase the allopurino. In an attempt to save his feet from being amputated.

I like wikipedia. I know there are better references...but it is usually pretty straight forward. Allopurino.

It says:

"In addition to its use in gout, allopurinol is also commonly used as prophylaxis with chemotherapeutic treatments, which can rapidly result in very high uric acid concentrations due to widespread cell death (tumour lysis syndrome)."

So, the diabetes is killing off the body's cells, the kidneys are failing to process the waste. But a second reason for build up of uric acid is the death of the cells. So he is getting hit with this as a double whammy in my mind. Once from the kidney function and secondly from the dead cells.

The side effect of this drug is worsening renal function, thus the monthly kidney tests at this point.

At this point, I'm seriously thinking I should go back to school and become an endocrinoligist! NOT! But there are moments when I think you can learn more on the internet than any doctor/specialist can tell you. :o)

DW

from my heart

I went upstairs tonight to go to bed, and he had on a pair of depends. I wish I could write what is in my heart...but I'm not sure I can find the words to express myself. At first I thought it was due to bladder incontinence. But then I realized...it's bowel incontinence.

I've done quite a bit of research on this, trying to prepare myself mentally. One of the websites that has more information than most is the Joslin Diabetes Center

And his neuropathy is getting worse. So it does not surprise me. Yet it does. I guess I just wasn't ready to see my husband in depends at this point of our lives.

I can see the outward signs of this disease in his charcot's food, his gout, and his impaired vision. So I don't know why I continue to deny that the same types of things have to be going on inside his body.

Of the types of neuropathy listed on the website above, he has been diagnosed so far with:


sensory neuropathy
distal neuropathy
bladder neuropathy
postural hypotension
charcot joint
impotence

The nerve endings are dying. "It can take up to two years for the pain of neuropathy - which is caused by ongoing damage to the nerve - to be replaced by the numbness that occurs when the nerve cells are more severely damaged. " He has already lost feeling and sensation in most of his fingers and in his feet.

So as I look at him tonight, I do understand (yet fear) that the nerve endings inside of his body are dying. And perhaps that explains why he is in so much pain all of the time.

But what happens as more and more of his nerve endings die off? How long before dialysis. And what "real" value would a kidney transplant be? Just prolong his agony? A kidney will only process the waste in his system. It won't alter the fact that his pancreas no longer produces insulin. It could not reverse the loss that he has already suffered.

I know this sounds horribly selfish, but tonight, I am having a difficult time comprehending that he is now in depends. But at the same time, I am so grateful that he took the initiative to wear them on his own.

I just have to wonder, what next?

DW

Note: He changed his mind on eating healthy. 5 days ago I posted that he had agreed to diet (translate - eat healthier) and then the next day he changed his mind. He probably had a pound of chocolate yesterday, Easter Sunday. And no, I did not buy any of it.