pinkhernia

The hernia is a lot bigger

It’s a good thing I was a strong and powerful woman in my past. All this sitting around as a senior has weakened me. It’s amazing to me that a trip up and down a canyon in a vehicle could do so much damage. My stomach muscles were way too easily pulled and bruised. The hernia rips at the slightest provocation. It all goes back to the same old lament. Without IVIg, I am fragile. It doesn’t take much to tank my breathing. If I vacuum or change sheets or stand to cook very long, my muscles get weak thanks to myasthenia gravis. My most important muscle related to MG weakness is my diaphragm. It’s very, very scary each time that muscle is compromised.

chronic-pain-cycle

When I got regular IVIg, I was able to stay more active and that kept my core strong. Ever since doing without IVIg, the only way I can prevent muscle weakness and loss of breathing ability, has been to sit as still as possible. But….being inactive also makes me weaker. Now I am caught up in a vicious circle so that being weak causes me to get weaker. Obviously it makes me mad that I find myself in this situation. I am at a loss for what to do as long as I am in Utah.

I still want to know why my eyelids are sweating! That’s one weird symptom. It’s only 82 outside so I had the window open and the fan on me. I was constantly wiping the sweat off my eyelids so I could see. I had to close the window and put on the A/C. I still have sweaty eyelids. What the heck??? Also, I feel worse than ever. I am zapped of energy, am feverish and my double and blurry vision is a problem.

F-35 Flyovers

Did I really see F-35s? 

There were loud airplane noises in the sky, so I went to the window and looked. I thought it was a giant biplane with really long wings. I’d never seen anything like that before. So next time the noise went over, there were 2 white and 2 black small prop planes flying in formation. I quick looked to see if there was an airshow going on. Then the planes came over in a different formation. I think, but I am not sure that the first plane was really 4. Who knows? I’m so confused!

F-35’s were scheduled to fly over the Leonardo Museum for the grand opening of the new Flight exhibit. There was a giant helicopter in the middle of the cordoned-off road on Thursday. Lots of armed services folks in fancy dress for a fancy party that night. Aha…here’s the answer on FB…Kinda bummed the F-35 was replaced by the warbirds, the first flyover wasn’t at 9 but moved to 10, and the hot air balloon isn’t actually inflating or taking rides. I understand these were likely out of The Leonardo’s control.

My brain is so impaired right now that all thoughts are in slow motion. I’ve given up on thinking the whoooowwwooooooowoooooooaaaahhhhh…..whoooowwwooooooowoooooooaaaahhhhh……..whoooowwwooooooowoooooooaaaahhhhh noise in my skull as my vision and heartbeat pulsate with the sound is never going to go away. It has been weeks now. The pressure inside my head is intense when I stand up.

glory

On one of my support groups, people are still reeling from the recent deaths of 3 people with MG. Back when my primary disease was lupus, deaths were common. Some died from kidney problems, but most were suicides. Over the years, many, many people I knew well online have died from MG complications. It’s a fact of life. People die from both acute and chronic disease all the time. Just try living in a senior apartment for a while. People here drop like flies 😦 I have to admit, I am baffled by so much grief. For those of us with medical issues, we are always living on the edge between life and death. I had no idea that so many people lived with such deep fear of being dead.

eternal-life-hinckley

It’s good to take the long-term vision of mortal death as being the next step in eternal life. If people feel that this is it, way too much life is wasted worrying about death. It’s going to come, it will happen to all of us. We should do our best to be healthy and then sit back and watch the show. All the examples of how to cope….or not are right in front of us. And we need to do more than sit back…we need to find ways to plunge into life. I miss the days of being physically active. I switched to mentally active, and now my brain fails me more and more. Everything is a transition. It’s good to keep adapting.

adapt

This must be crunch time. Lots of dragging and banging going on upstairs. Nope, not a wild sex orgy….sounds like serious clearing out of the upstairs neighbor’s stuff. It’s a weekend, the funeral is probably over with. They have had time to grieve. Now it’s time to get serious. The building’s vultures are probably hanging out nearby, hoping for some choice morsels. I hope they put some of his things on the free table. It meant a lot to me to grab a couple of my other dead neighbor’s books. I thought about him the whole time I read them. I don’t want any stuff...I just want a memory. Sometimes just looking at what’s on the free table is enough. I get a feeling for that person that I never had when they were alive. I finally had to give away the yellowed blender I got from the guy that smoked himself to death. The lid soaked in nicotine from cigarette smoke made me sad. I’d rather remember the guy walking his goofy looking dog with snaggle teeth. It feels important to me to have a special memory from each dead person.

purple belly

I was tired of sitting around in tons of pain while all stuffed up. I went to TJ’s to buy real peanut butter, then to Smith’s for bread. Less than 2 blocks from home, a little boy approached my wheelchair with wide eyes and said I had a very fat belly, as he patted it. His eyes were bugging out. Hmmmmm…..I was in denial that it looked that big. I pulled over at the next opportunity and tried to take pics of my belly, but I cannot hold the camera far enough away at the right angle. Maybe I should have tried top-down.

gift

By the time I got to Trader Joe’s, I was a zombie. Usually I am all smiles and happy in the check-out line. I felt like I could hardly move my face or make my voice heard. The cashier rang her bell. It only half registered. Then she went on and on about how she sees me in there all the time. Apparently my zombie-like demeanor freaked her out. She handed me a bouquet of flowers as a gift! My smiler worked enough so she could tell how happy I was 🙂 I got outside and shed a tear or so in gratitude.

needs

Then over to Smith’s. I had a heck of a time deciding what bread to buy. You’d think it was a huge decision. I waited in line for a while and the guy in front of me turned around and gave me 3 vine tomatoes that were paid for! When my favorite cashier hung my bag on the wheelchair, I showed her my flowers. She was surprised I was being given so much. Angels. God sends them when we most need them!

different dark and brooding across street

It was just like the other day. I felt a few raindrops a few blocks from here, but when I got home, there was blue sky. All the pics are my street…with dark clouds on one side and sun on mine 🙂

sunny side of the street

clouds noclouds

Look at that dividing line! The sun starts at our apartment building.

rain storms

On the news tonight, they showed the rain and one inch hail in Draper. 3/4ths of an inch of rain there, not a drop here.

Have-A-Great-Weekend

What a day, huh?

live

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