Saturday, November 21, 2009

a month to change a med?

MaryB wrote:
(((((HUGS)))) for you DW. When I read your blog it is like I am reading about my life with my Type 2 husband.

I recently found out that one of my dh's meds is causing extreme lows. His doctor will be changing his meds next month! I wish it could happen today.

All we can do is take one day at a time and take special care of ourselves so we can be strong while on this journey with the one we love.


Ya gotta wonder what the doc is thinking? Why would/do they wait a month to change a med? If they know it's causing extreme lows - why wouldn't they change it today? this week?

I do understand all about lowering the level of 1 med while introducing another - I had to go through that when my son who has seizures turned 16. We took him off Tegretol and put him on Dilantine and it was all done while he remained in a hospital for over a month. Horrible process!

But I've never heard of a diabetic needing to go through something like that to change meds. So I still have to ask - why not today?

I woke up this morning with the very same thought - I just have to make it through today, 1 hour at a time. It's 10 am and he's not up yet. I don't even want to face the day with him, so I may "need" to go visit my sister. I think it might just be best to have "something" pop up in my life! On the other hand, I'm too tired to go pack a bag! Had every intention of making it up to bed last night, but fell asleep on the sofa watching a movie. I like old movies. Mind-numbing stuff you don't have to think about! But I'm paying for it this morning with a stiff neck!

Yes, one day at a time, one hour at a time, 1 minute at a time - we do muddle through, don't we?


Friday, November 20, 2009

I know it will get worse....but.....

I am beyond exasperated at the moment and will use this blog once vent.

I'll write what happened....but I need an answer as I write can I keep this up? I just don't know!

This past week, I have just about gone insane around here. His back is killing him and I know that. He has been laying on the floor, not eating, sitting in his chair in the office, laying on the bed, laying on the sofa. In the meantime, I have been cleaning. He makes breakfast and spatters grease all over the stove top and has bagel crumbs all over the counter. He never puts up a pan or anything. I come in and clean up after him.

He uses an electric toothbrush and splatters toothpaste all across the mirror and all over the sink and couner top and I come in and clean it all up. Every single morning.

He has diahrrea and I'm the one who cleans TWO toilets on a daily basis.

He wants dogs. We have 2. He will feed them in the morning. But it's me that has to clean up the messes, change out the potty pads, clean up their vomit when they get sick...

And I'm tired of it all.

So today, I had to run out and get glass for an art project and I came home with my arms loaded down and took one look at the kitchen counter which was covered with grease and food and there was no place for me to put down my load. He was sitting on the sofa watching TV. I just said, "you are going to have to start cleaning up the messes that you make around here!" I didn't yell. I didn't raise my voice. I just said it as a natural, normal, matter-of-fact conversation.

Well, that set him off. And I mean in a big way. It started at 2 pm when I got home and it didn't get better all afternoon long. I just left it alone. Not worth an argument if you ask me. I figure he had made himself breakfast and lunch so he shouldn't be low, but who knows. I'm just tired of it.

I spent the afternoon coloring my hair, doing my nails....pampering myself as we had plans to go to the Melting Pot this evening with another couple. We've been with them before and just had the most I was really looking forward to the evening out.

At 5 pm, I was ready to go, sitting on the sofa answering emails on my laptop and he came in and laid down on the floor in front of me. So I know his back was hurting again. He went to sleep. At 6 pm, I said, "we need to leave in 15 minutes, are you ready to go?"

He said, "I'm not good enough to go".

And I simply thought to myself, fine. He doesn't want to go. I'm not going to force it at all. Yet at the same time I really wanted him to go. I wanted him to get out of the house - to do something, anything. So I said, "why do you say that?" and of course he started in about me telling him he didn't clean the house good enough. Which is not what I had said at all, but then we know where this is going. He said that I yell at him all the time (translate that came from a one line comment above!) LOL!

I really didn't want to get into yet another fight with him, so I said, fine. And I left.

I got to the place and of course our friends wanted to know where he was. Now, "she" has seen him in a low and knows how he gets, and I hold nothing back these I just said that he was having a really bad low and didn't want to join us and that they best get used to being alone with me because when he is gone, that's all they will get! And guess what, we had an absolutely fabulous time and I laughed for 2 1/2 hours! I am so glad that I went. Alone. Without him.

And I didn't want to come home. But I did. Went upstairs and didn't say a word to him and he didn't say a word to me. Got into my jammies and came back downstairs. I'm sure I'll go to bed later on. Maybe I'll just sleep on the sofa or in the guest bedroom.

This will go down 1 of 2 ways. He will either stay mad at me and give me the "silent" treatment for the next couple of days and then become ever so remorseful and fearful that I am going to leave him.....or he will become that way tomorrow.

The ups and downs of this disease just exhaust me beyond reason. I hate it when he acts like a 10 year old like he did tonight. And I suspect that he is going to continue to do this in an effort to distance himself from all of our friends.....and probably try to push me farther away from him.

So, do I butt up against him and refuse to leave. Or do I just leave? If I'm going to be alone anyway, why not start now?

Mostly because I'm too drained to even think about it.


Wednesday, November 18, 2009

Dialysis - are you prepared?

Ady wrote:I do not want to scare you, but even the path to dialysis is not easy. He needs a fistula (connecting a vein with an artery; it starts low near the hand of the left arm, to be moved up higher if this one is dead, and upper again, and then the right arm and then the leg and...). I had no idea that I will have to see this Dr (specialist in blood vessel surgery) many times. It's an outpatient surgery, but it's a surgery with full anesthesia. The problem is that it takes 3 to 4 months for the fistula to "mature" for them to be able to use it. Which means, they may have to put a caterer in the hart artery, (another surgery), if his kidney is bad. If the kidney is bad, the potassium gets very high and puts the heart at risk. The hart caterer is very prone to infections, no shower allowed, so you will have to wash his hair in the kitchen sink, as I did, or send him to the barber shop. No fun at all. The way he sleeps is the toxins buildup. He should do less insulin too. I know it's nothing you can do or control, I am just talking aloud, because I know you like to know what to expect. I am there with you and hope he will go to see a kidney specialist soon. A GP is not enough.

Ady, thanks for starting this conversation. I have researched as much as I can so that I am prepared for what he will have to go through. But it's sort of like everything else. Each person is going to have an individual reaction......and besides, can you ever really prepare for anything in life?

You are so right - I can't control it. I can't prevent it. Maybe at best I can brace myself for it! That - and surround myself with good friends, strong family, and be ready to ask for help if I need it.

As for a kidney specialist - he has NEVER been to an endo to this day. That is beyond me. But again, I can't control that either. It's between him and his health insurance. They send him to a GP, who will send him to a rhuematologist (sp?) and a couple others, but never to an endocronoligist yet.

And he will be going to the barber.....I don't think he could possibly lean over the sink to have me wash his hair. Yesterday, his back was so bad, he got down of the floor and had his feet up on the sofa and packed himself with pillows. I don't know if it helped....or if it was just a different position. I do think that if the pain gets bad enough, he will go to the doctor again.

In the meantime, I have art projects to do! Thank goodness!


Sunday, November 15, 2009


Ady wrote:

I know you asked a while ago about dialysis, how you know when it's time. Basically he sleeps a lot, watches TV and falls asleep. He would says he is not feeling well. He could not explain it. It's the kidney that is not able to eliminate the fluids and the toxins. I am fortunate that the nephrologist is talking to me and I asked what if he refuses to go on dialysis; she said he will die. I asked what type of death is that; she said he will go to sleep and never wake up, no pain. He also had few episodes of diabetic coma, and they were there because the kidney will not eliminate the insulin. At least I could see them coming and gave him glucose and OJ. Those episodes scared him a lot. He did not have any after he started dialysis, but there are other issues: eating, sleeping (they can't sleep through the night), restricted drinking and all the other extra pills (vitamins that the machine depletes the body off, anemia - iron that they give him via the dialysis, potassium that gets high). He drives himself, which is good. However, his driving is as bad as you all have shared with us. When I told him is the diabetes, he laughed at me. Lately I refuse to go if I do not drive. Your blog has helped me a lot, understand some consequences of the disease (driving, anger, incontinence). Thank you all and you specially DW (as I read all your blog),

Ady, thanks for your insight. I'm sure my hubby is just a step away from needing dialysis. In fact, he might be in need of it - who knows since he hasn't been to see his doctor in forever.

He sleeps all the time.
He comes downstairs, sits down on the sofa, turns the TV on, and falls asleep.
At 10 am in the morning! At 6 pm at night....ok, at any time of the day.
He usually goes to sleep about 10 pm and sleeps til 8 or 9 am.
He gets absolutely no exercise other than going up and down the stairs twice a day. Sometimes only once. And if we go out to eat, then he has to walk. The rest of the day he is either in bed, in his office in the chair, or on the sofa.

I know that the last time he went to the doc, his kidney function was at 22%.

He has probably put on 20 pounds in the last year. I know it's because the waste is going inward, no exercise, and he does eat all the time.

Personally, I imagine he will have a heart attack first.

He has been getting optical migrains where he sees nothing but bright white. So far, his vision returns. I just wonder how long before it doesn't return.

If I'm in the car, I drive.

And, as an example, today he has had:

a can of clam chowder
turkey sandwich and fries from Chilis
ham, egg and cheese bagel
chocolate dove candy
ham egg and cheese sandwich
potato chips

Not an ounce of nutrition in there, huh?

On and upbeat note. I spent today and yesterday teaching art techniques to a wonderful gal who flew here to attend my class. It is a great confidence booster to know that I'm ok. Ok enough that someone else would fly in to learn from me. So it does help to have something else in your life that is "greater" than the diabetes, something else to focus on, worry about, stress over. I think it's the best thing I ever did. So, for the past 48 hours, I've escaped once again into my "other" world. It's something everyone should do.

the therapist I spoke with said this....

you need to find a goal in your life. That can be to get a job, to get a career, to volunteer, to have a hobby, to work for a cause. The goal is to get you something else to focus on. Something that you can devote your attention to. That way the diabetes isn't the only thing in your life.

Really good advice, huh?

But know that it took me 5 whole, long, endless years to agree with her and get myself to where I am today.

And it doesn't mean that I don't check every morning to see if he is still breathing. Or that when he falls asleep on the sofa - I don't worry about if he will be able to wake up....or is he in a coma?

It just puts something else in my life for me to think about as well. And that helps!