rest-after

I rested for 3 hours after taking a shower. I was still wiped out tired. Only an hour more until the insulin pump trainer gets here. I tried to vacuum. My vacuum is toast. September 6, 2012, I wrote….”Got some good stuff like a Shark vacuum for $6.” I think I got my $6 worth at Deseret Industries thrift store. But that’s a whole new conundrum…most any vacuum I could get now will last longer than I will. I need a new one, but what a waste! It also has to be as lightweight as possible. The shark is at the limit of my strength.

shark

I just vacuumed about a third of my apartment. There’s too much cat litter tracked around to just use the swiffer-like thing. It has to be vacuumed. Even though I had cleaned out the vacuum before putting it away, when it fell out of the closet, a big gob of cat hair and a lot of cat litter came out of the sucking spot. I had to get out the broom and dustpan. It was all way too much for me. My heart was trying to pound out of my chest and the insides of my lungs felt painfully raw. I’m lucky I made it back to my chair without collapsing.

not-grateful

How can I do any of this???? I am overwhelmed at all that needs to be done like laundry, bed, cleaning. And all the learning for the insulin pump! My body and brain seem woefully inadequate for all that must be done. It’s moments like this that I wish I were already dead. I hate feeling helpless 😦 I think I will be glad when hospice help finally kicks in. I’m not very useful sitting here sobbing, still not dressed in real clothes, with the floor not vacuumed. I need a shot of strength and energy. It’s as if I am not even taking steroids 😦 And yes…I checked to make sure I had taken my Medrol.

grief

I stood up to get dressed and both legs gave out underneath me. Thank goodness for my walker! I just barely was able to catch myself and get to my chair. I guess this is the day that heavy-duty feeling sorry for myself happens. It’s one of the grief stages I’m sure I will get all too familiar with 😦 Too bad we can’t just go down the checklist and get it over with. Instead, each stage gets revisited many times. Oh, joy.

A front is coming through. The change in barometric pressure and all things weather related is always a sickness/misery maker. I was excited to drop dead. I am less excited about enduring the indignities before I do. There’s a government study on the angry dying patient.

brave

After talking to the diabetes educator for a couple of hours, I feel better 🙂 Using the insulin pump so far is easier than I thought. Now I just have to learn to adjust to my idiosyncrasies. The woman who taught me is a type 1 diabetic. Olive insisted on breathing her breath, too 🙂

I went out for a ride around a few blocks when she left. That helped adjust my attitude. While the educator was here, there was a knock on my door. It was the delivery guy for my pharmacy. Imagine my surprise when he delivered the denied Xifaxan! Must be the gut whisperer is also an insurance whisperer. The prescription is for 3 courses of 2 weeks each between now and a year later. I will probably start them tomorrow. I hope they help. The gastroparesis is like a cannon ball in my gut.

not-planned

I was prescribed Xifaxan in August, and got it 19 days later. I wonder how long it will take for hospice to start? Healthcare is as much paper shuffling as it is care. At least most things eventually work out…..right???

I’ve already messed up my infusion set….which is the tubing between the pump and my belly. I tugged on my undergarment and totally forgot about the tubing. I unceremoniously yanked it out 😮 I watched a bunch of Medtronic videos to make sure I was putting it back in right….which means doing everything all over again. It seems to be working….so I passed my first test.

not-sure

What a day! I have not felt well for any part of it. I have a hard time dealing with uncertainty today. And a really hard time dealing with my worsening myasthenia gravis and wicked painful guts. It takes about 3 words to slam shut my eyelids and about 3 words to render my voice broken for hours.

BellyHole

You know what the highlight of my day was? Watching the diabetes educator stare in total fascination at my belly collage. No trace of pity or horror….just amazement that a person can have that happen. Me, too!!!!

bite