Here’s one thing that was in yesterday’s vaporized post. Olive got a present from Carolyn! Thank you! 🙂


Wednesday I was told my pink insulin pump was shipped, and I would get it in 1 to 3 days. Tracking looks like I will get it Friday. I am supposed to get a call from a diabetic educator who will teach me how to use it. A whole new chapter in my life.

gigantic hernia

The big blob 😦

My hernia has been hurting in new places from internal ripping. I forget now what I did yesterday that made it worse…..ohhhhhhhh….coughing, choking and sneezing! Each one made it rip more. I decided to put my hernia on the countertop and take gruesome pics. These were in yesterday’s post that disappeared.

intestinal blob

In this pic, I am holding back the squishy left side so you can see the actual hernia better. The cave underneath the middle seam is where my belly button is. There is very thick scar tissue at the midline. That’s where all the incisions finally healed together.

split belly

This better shows how horrifically huge the hernia is. As my intestines push out further and further, the skin gets thin and has monster sized stretch marks.

right bulge

Every different angle shows part of the story. The hard part of the hernia reminds me of a clam foot or a snail coming out of its shell.

intestines falling out

The farthest to the right I was able to get the camera. My hernia is like a bag of basketballs.

top down

This is the camera at head level, looking straight down. Most of my intestines are outside the fascia. The bumpy trip up the canyon caused internal rips above the top seam and below the bottom seam from the emergency incision after infection. My intestines can creep further to the left in both places. That causes sharp pains, cramps and muscle spasms.


Geese in the park. I took TRAX to the Jordan River Trail, then to my doc’s office. I like that route…even though the underpass tunnels are scary.

I forget what else I said yesterday in the post that vanished. My excitement for today was an appointment with my internist. His nurse found out I was in the ER a week ago and she insisted I come in today. My doc was in a very strange mood. He wanted to know what the purpose of life was. He didn’t like that so many people are sick and poor. He went off on a rant about Republicans being crazy :-p We spent more than an hour talking. I felt like his religious advisor and counselor. He did manage to fit in some doctor stuff.

The doc says that my pharynx is very small….and that’s why I keep choking. I know exactly why my pharynx isn’t working right. It’s a typical MG symptom. That’s what part of me goes slack when I cannot talk. Sometimes when I swallow, it’s as if I am swallowing sharpened knives. He practically stuck a tongue depressor all the way down my throat. Dang! I got dizzy and it was even harder to swallow 😦 When I get IV steroids or IVIg, my throat works.


He insists that what’s going on in my head are numerous TIAs. I had a big one this afternoon. I almost lost consciousness in front of the guy who talks to me through the window. He got scared and went home 🙂 Not sure why it’s not mentioned on today’s list. He also thinks the bump on my leg is fibrotic and not calcium. 3 docs….three different opinions. He wants me to go back to the sleep doc for a biPAP or a ventilator type thingy. Quite a few MG people have non-invasive ventilators.

Oh…..did I mention my neighbor that stopped me last Thursday morning? She thought I looked bad. An hour later, I was having those chest and head pains on TRAX. Today I asked her how she knew there was something wrong with me last week. She said I was very white, one pupil was bigger than the other and I was SOB. She told me I didn’t look well today, either! She says after years as a nurse, she just knows stuff by looking at people. She is also self-conscious about her knowledge and never knows how much to tell people.

I have come to the conclusion that my traveling days are over. Too weak, too many diseases, too many meds and too many types of medical equipment are needed to keep me alive. Sigh…..I can feel the fight draining right out of me.


Burgers with Havarti, roasted vegetables, catsup, tomatoes, guacamole from Wednesday’s meal. Thursday I had the same thing but with Provolone and I remembered to heat up the mushrooms, too. Both meals doubled me over in pain 😦

When I woke up this morning, the back of my left hand and the palm side of my middle finger were painfully swollen. Tonight, the tendon in my right middle finger keeps catching on my middle knuckle. It did not hurt when I used my fork to cut a burger, but hurt like heck each time I moved my hand from plate to mouth. I had noticed earlier today that the pads at the bottom of my fingers where they attach to my palm, are all swollen in both hands. For some reason, the palmar fibromatosis is flaring again. Obviously something is very not right in my whole body.

The doc wanted to know if Heather was fat like me. I said no….she looked like I did around that age. I showed him a pic of what I looked like in 2011 before the crap hit the rotating blades. He said you were pretty!!! Then looked a bit taken aback that he had blurted that out 😛 What a difference 5 years makes. Sigh….

Wendy and Heather after having babies

Wendy and Heather after having babies

It really and truly happened. The corporate cleaning guy came to my apartment while I was at the doc’s office. He sprayed something that formed a white, powdery dust inside the A/C cabinet. Then he came back when I was home. He has a giant box truck with a very noisy and powerful motor in it. There is an orange hose maybe 4″ in diameter that is one heck of a powerful vacuum. He had dust flying everywhere. He said there were lots of water leaks in the wallboard and they might need to put in new wall. Here’s hoping it will be OK in a few days! He also put a new light in my fridge and will come back tomorrow to remove the springs from my hinges….so I can get my new wheelchair in and out of here. New, new, new!

Geeze…I keep remembering random things. My internist thinks it’s a bad idea to go to the Alzheimer’s clinic. He sees it more as a place where people are used as guinea pigs in clinical trials. He thinks the clinic benefits the researchers more than the patients. He was pretty vehement about that. My doc says he has prescribed every sort of Alzheimer’s med and not a single person ever got better, but the side effects were bad. He wants to see if my new neuro thinks I should leave well enough alone. He says me learning stuff on the computer every day is probably the best thing for my brain. He also says I’m 60…so of course I have dementia. Then he added that he’s 62 😛