I had an 8 AM doc appointment. I think I wrecked his day 😦 I look and sound like the undead. My BP was 140/70 and heart rate 96. Strange numbers for me. I think my heart is beating almost twice as fast as my usual just to keep enough blood pressure. When I stand, fainting is so close. Today, just sitting is enough. I feel like I am falling. Like I am going to whoosh away. My voice is broken and barely audible. I have that sensation that if I get into the groove of falling, I won’t come back. It’s both fascinating and scary.

The doc thinks there’s not much that can be done for me. I can see how conflicted my condition makes him. He is angry that I cannot get IVIg or have my hernia repaired. He realizes people just wear out and not everything is within his power. He kept vacillating between wanting to call an ambulance and letting me go home. He repeatedly asked if he should call the ambulance. I guess he wanted to make sure that I thought further care there was useless. He acted just like the nice neuro. He came over next to me to touch my arm and rub my back. Docs don’t like feeling powerless and these docs have a great deal of compassion.

He was not impressed by what I told him about the nurse of death from hospice. He wants to find me a kinder, gentler organization. He is also going to call the nice neuro. He wants to brainstorm with her about treatment for me. The poor guy was grasping at every straw he could think of. I let him know it’s OK, I know I am not going to last a whole lot longer. He looked so sad.

It did cheer him up when I asked a technical question. I wanted to know if Lantus could have made me swollen up. He really got into pantomiming how fast and slow acting insulins force glucose into the cells. Lantus is slow acting so he says it was impeding the flow of fluids. Or something like that! I’m glad I asked. He needed to feel smart and useful. He was more depressed than me about how awful I’m doing.

At this point, I have multiple life ending problems…the MG and the hernia….and then everything else. I’m so danged weak. My diaphragm is tired out. My lungs sting. My ears never stop ringing and whooshing. My brain is intermittent. I will feel like I am capable of something like getting a drink, then I move and reality hits. I honestly do not want to move into assisted living or anywhere. There’s not a whole lot of mental or physical energy left in me. My mind changes a lot!

Six hours after my doc visit, I got a boost from steroids. My guts weren’t working before. When they started working again, so did my meds. Cool 🙂 I think I also got a massive dose of adrenaline. The guy who comes to my window has a hard time hearing NO….no I don’t want to hear gossip, no I don’t want to hear about criminal activity, no I don’t want to hear the same complaints every day, day after day. I had been keeping my blinds closed in the evening so he would leave me alone. So, he shows up at 2 PM and starts whining. There’s something about limited time on this earth that makes me quit trying to be polite to someone who is disrespecting my wishes! I told him to stop. I reminded him I don’t want to hear it. He started again. I said NO. I’m feeling ummm, ahhhh, intolerant of fools.

I was trying to do a set change for my insulin pump when the window stalker showed up. Once the adrenaline kicked in, every part of my body got shaky. Do you have any idea how hard it is to insert delicate needles while shaking? I bent the first one. I wasted a bunch of insulin. I was too mad to cry. Hopefully I did everything right and insulin is now flowing into me.

I put on my pulse ox. My heart is still beating too fast. I wonder if that’s what’s making my oxygenation better? I’m usually around 90%, give or take a couple percent. Today my oxygen is at 96%. But….my chest is sore from my heart beating so hard and so fast. I wonder what this morning was about? I felt like a was slipping out of consciousness. I didn’t think I was going to survive that…and here I am!


Our weather is about to change…in a dramatic way. It has been snowing in the mountains near Snowbird, but now it’s about to snow a lot closer to home. I took a pic of snow in the mountains on the 16th. Hard to see clearly through all the wildfire smoke.


active 16fires

It has been wicked bad smoky the last few days.