My limited understanding

solitairecards

Ever play solitaire on the computer? Sometimes you can think it’s impossible to get all the cards where they belong and then poof! A move here and a move there and it’s magically done! At the point of least hope, it’s a win!

I notice the exact same patterns in life. I ponder on seemingly impossible problems for weeks or months or years. All the solutions seem out of my reach. Then something unexpected comes along and poof! Everything is different and there is no longer a problem.

That’s because no matter how smart we are or how many angles we explore, our understanding is puny. For me, that’s an even stronger reason to have faith in God. God created the universe. He knows a heck of a lot more than we do. He also knows us….each and every one of us are important to him. Here in mortality, our understanding is miniscule. Someday it will be vast. Until then, we need to listen to the one who knows what’s going on.

braver

I have been lost in thoughts all day. Now that so many people here have seen me in tough shape, most are convinced I am going to die any minute. I went from being mostly alone to people coming to check on me several times a day. I’m hoping we can reach a happy medium with that. It is nice to be cared about, but ummmm, uhhhhhh even I am running out of things to say….and definitely running out of clean clothes to wear!

Tonight when the nice woman came to say goodnight, my voice was broken. She couldn’t understand me. I had a sharp pain in my gut and she winced more than I did. I don’t like feeling that I am a bother. I know this woman considers herself blessed to be here for me. I need to learn to be a lot more gracious with everybody. There’s no end to the life lessons I need to learn. Sigh….

helen

Then, I was reading my email tonight, and yet another MG’er died. Her son wrote us all a note. Helen was only 49. She died like my father. She walked from one room to another and dropped dead. Her son is very sad for her…and all of us with myasthenia gravis. I got to live to 60 so far. So many of my fellow sickies don’t😦

kalesweetpotatobutternutsquashpizza

 

As for me…I acted like I was starving today. I was soooooo hungry. No matter what I ate, I was still hungry. After weeks of finding food awful, this is unexpected. Now I’m going to get even fatter! A long time ago, I bought a Trader Joe’s pizza. Today I ate it….except for the large crust all around the edges. I still can’t taste much….but it didn’t hurt once I ate it🙂

winnie_belly

Saturday…..I sit all amazed!

It rained pretty hard last night. I slept through it🙂 The clouds will clear out later today. When I saw the first glimpse of blue sky this afternoon, I could not stop smiling. We needed the rain, though. Before it came along, we only had 8″ so far this year.

matt

It was announced that a man I had talked to online a few days ago is now dead. He had West Nile Virus. Unfortunately, his experience with healthcare was almost identical to mine. He kept being sent home from the ER. They basically told him to suck it up and endure. Well, he tried. They did give him IVIg, but it sounds like they just gave up after one infusion. I’m not sure if I have this right, but I think he was a pilot in his 40’s…and he was in good shape until he got bit by that #$%^&!! mosquito. Dang! I’m still here and he’s dead. I feel so bad for his girlfriend😦

surpised-alive

I think a lot about my purpose here on earth. This week/month/season has been plenty dramatic. I was in the ER twice due to numbness that seemed like a stroke, I was in very bad shape a few times when people were around to observe. Each time I have just as dramatically gotten better. This old body has always had a miraculous penchant for self-healing. It wasn’t my time to go.

Friday I spent my time calmly sitting around, trying to rest and relax. I was surprised every minute of the day that I was still here and in much better shape than I ever thought I would be again. Today the falling feeling has come back….and with it, the debilitating dizziness and heavy, heavy arms and legs. It’s always anybody’s guess if I will get better or worse.

wasnt-expecting-that

Today is iffy again. I have been feeling dizzy just sitting here. I decided to take out garbage and recycling. A nice woman I didn’t know heaved it all in the dumpsters for me. We stayed out there and talked. Then another woman came over with her stuff to toss and we were all talking. Good thing I’m already in a wheelchair! The hyper woman said I turned bright white, my eyes fluttered and I looked like I was losing consciousness. I lost the ability to speak. The women freaked out big time. I made it back to my apartment. Not feeling too with-it. At least my life is not boring! 😛

Ohhhhhhh, my gosh!!!! It happened again!!!!!! I was extremely dizzy, in and out of consciousness when my neighbor came to check on me. I could see about 8 of her and couldn’t even say a whole word with one breath. News travels fast here. The people who saw me almost lose consciousness and lose my voice in the parking lot told a bunch more people. The resident busy body called up her friend and was all shook up that an ambulance had not come for me….so she wanted her friend to come see if I was OK.

light-from-heavenIt was hard for me to talk and really hard to be understood. I started to very brokenly, between gasps for air, tell her about the near death story I had told my friend on Thursday. I put my arms up and made a circle with my fingers to show her where the light had pierced through the clouds and landed on me. It did it again!!! Right in front of this woman, the light burst in, my breathing and voice went back to normal, my face undrooped, color came back to my skin and I was better than I had felt all day! I about went into hysterics. I was laughing and crying and in total awe. The woman watching all this was stunned. We talked for a half hour and she went home a different person than when she got here.

helping-othersI guess that was to prove to me it was all very real the first and second times. This woman is teetering near the edge of death herself. I think she needed to see this. Words just aren’t adequate….

light

Faith in God is where it’s at🙂 Then tonight I was watching President Dieter F. Uchtdorf give a talk for LDS Women’s Conference. His words about faith gave me major goosebumps. I was looking up in the sky where the light burst through twice. As if on cue, at that very moment, a dozen honking geese flew directly over me. Talk about goosebumps! They are the first flock of the season that I have seen or heard.

second-coming-jesus-christ-mormon

Another thing….I have been thinking a lot about the signs for the second coming of Christ. Earthquakes have been increasing in frequency and intensity…as have hurricanes and cyclones and all sorts of things. I reread this lesson a few times, which has my favorite picture at the top. What a goosebumpy day! Signs of the Second Coming

got-oil

Striving for calm and cool

awful

Yesterday was intense. It was both awful and awesome. I hope today is less eventful.

awesomewonderful

I got in bed, fell instantly asleep and woke up 7 hours later. That’s one good thing about exhaustion! The bad thing is that in the night, my sleeping mask shifted and my eye opened. When I woke up, my eye was stuck all the way open and my eyeball was dried out😮 Eeew! I put Restasis in my eye and it still stings. In hindsight, I probably should have started with plain moisturizing eye drops. That eye is still seeing things a bit fuzzy, but it seems OK.

Yes, I still feel the all-over quivering, but nothing out of the ordinary. I hope it stays that way! I have a lot to ponder.

courage

Perhaps in my rush to say things, I am not a very good storyteller? Yesterday, when I posted about how I was feeling and asked for support on an MG site, it generated 87 comments and countless sub-comments. It always fascinates me how a subject can be interpreted infinite ways. All read the same thing. Many see it differently. Same with my blog.

respond

I have come to the conclusion that we all wake up each morning as the sum total of our experiences, beliefs and personalities. What’s affecting me that day also affects what I think and how I respond to the world. I also draw from remembrances of similar circumstances. We are each complex beings, usually trying to do our best to make it through another day and week, while also hoping to make a difference in our own and each other’s lives.

how

It took me most of my life to realize that what a person says to or about me is less a reflection of me, but more of them. I’m not really the embodiment of the great or the evil things people think. I’m just me. I think we learn the most about ourselves by observing others. What feelings do they evoke in us? Do we feel inspired? Angered? Excited? Apprehensive? Joyful? Happy? Sad? Whatever….

advice

It’s a lot easier for me to observe what other people go through than it is to figure out me. I know more about me than anybody else does. It’s simpler to see a stranger’s problems, actions and attitude and have a rudimentary understanding of what’s going on. We are all helping each other figure out life. This is the first time I have ever done whatever it is at this moment in time. I can make educated guesses and pay attention to my gut feelings, but each moment is new. Life is a constant shuffling of the deck. What will be dealt this time?

webelieve

It seems very, very important to have core values. Yes, they can change or shift, but over-all there are certain principles we use to guide us. No two people are exactly alike…nor should they be. I have been watching how the absence of a core causes haphazard thinking. When nothing is an absolute, every little decision is like a strong wind blowing a ship off course. We need something to aim for. For myself, that has been a faith in God. Over the years my depth of understanding has regularly changed, but not the faith. It’s up to each of us to plot our own course.

comprehend

I have pretty much always been sick. If it wasn’t one thing, it was another…from minor to serious. I did not get mad at God for my infirmities. They just are. My particular choice of religion is Christian. It does not take long in the Bible to find that none of us are immune to suffering. I believe that Christ is the Son of God. He had the power to both pick up and lay down His life. Look what suffering he had to endure in life! No one is immune.

jenga-fall

Now for me….what’s going on and my understanding of it. My hernia continues to expand daily. It does not take much to cause internal ripping and expansion of the hole in my fascia. That lets more and more intestines spill out. The more that comes out…the less guts are where they are supposed to be inside me. The newly hollow space means other organs are not supported properly. It’s like Jenga. If you take too many pieces out, the whole thing collapses. I am “the whole thing”.

Yesterday I took the dreaded blue line TRAX because it pulled up just as I got to the station. More often than not, I patiently wait for the red line to show up. I like the blue because it’s higher off the ground, and I can see more. I hate it because I have to depend on the driver to let me on and off, instead of controlling the ramp myself. Also, the blue line are the old trains. In a wheelchair, I am not part of the train and get shaken like you wouldn’t believe. Blue shakes ten times more than red. Yesterday the 2 of us in wheelchairs really got whipped around when the train was on a straightaway. I could feel the assault on my hernia😮 Last night, there was a whole new bulge on my left side. The bulk of the hernia is to the right. I’m sure that helped exacerbate myasthenia problems.

diaphragm

My diaphragm is a major source of weakness thanks to MG. It is also being messed up by the hernia. Most folks do not have a great appreciation for their diaphragm. Medline says “The diaphragm, located below the lungs, is the major muscle of respiration. It is a large, dome-shaped muscle that contracts rhythmically and continually, and most of the time, involuntarily. Upon inhalation, the diaphragm contracts and flattens and the chest cavity enlarges. This contraction creates a vacuum, which pulls air into the lungs. Upon exhalation, the diaphragm relaxes and returns to its domelike shape, and air is forced out of the lungs.”

Yesterday I got way too close to myasthenic crisis. Here’s what the National Institutes of Health says….“Weakness of the muscles in the chest wall and the muscle that separates the abdomen from the chest cavity (the diaphragm) can cause breathing problems in some people with myasthenia gravis. About 10 percent of people with this disorder experience a potentially life-threatening complication in which these respiratory muscles weaken to the point that breathing is dangerously impaired, and the affected individual requires ventilation assistance. This respiratory failure, called a myasthenic crisis, may be triggered by stresses such as infections or reactions to medications.” That’s what happened to me last year in February….and in years past. It’s scary. Very scary. It’s awful not to be able to breathe😮

In a sane world, I would get IVIg to recover from that and to keep it from happening again. Thank goodness for steroids! They are not as effective, but they are better than nothing. The doc says I am at the max dose he’s willing to prescribe. Hey!…at least the good news is that Plaquenil has stopped most of my MCTD (lupus) symptoms. I’m in a lot less pain. And I am still surprised that Voltaren is better than Motrin.

I have explained multiple times that I have a bunch of inoperable things going on with my guts. There’s nothing to be done but endure. Some of my docs get upset that the surgeons I have seen refused to operate. That’s why I saw so many surgeons. Then someone who reads this blog suggested the surgeon they found on the internet. He gave me better odds than the others, but still said I was inoperable.

The problem with my medical care is that there are endless specialists. I went to the surgeon in this one health system and he referred me to the endocrinologist who referred me to the nutritionist, gut whisperer and neurologist. The neuro then referred me to a more specialized neuro who knows MG.

The gut whisperer was not interested in talking about surgery, because that’s already a lost cause. His plan was to work on symptoms of gut distress and gastroparesis. I am still taking Xifaxan. Three days to go. Maybe it’s working? My guts seem different. One new thing is that I have been hungrier and hungrier. I have been eating more solid foods lately. When I eat, I no longer scream and cry. I hope that lasts!

I have two types of primary doctors. One is an internist. He is in the bigger hospital system. I was referred to him from the hospital I went to when I first got West Nile Virus. I asked him to test me for WNV and we were both surprised when the blood test came back positive. He makes a good traffic cop. He can look at me as a big picture instead of disease by disease. Since he is part of a huge conglomerate, he can refer me to lots of specialists…which he has. The drawback to that system is what I call the unholy alliance of the state, Medicaid, the hospital and the doctors. As a living, breathing organism, that conglomerate is like putting the fox in charge of the chicken coop. The insurance arm makes more money if it can deny expensive treatments…like IVIg. But in any system, they spread around the wealth by referring me to all their buddies and doing expensive tests. The insurance gets reimbursed for that by the feds. They even get extra from the feds by giving MG the HCC designation. It’s all a racket. No matter what hospital system grabs me up, they all do the same thing. There are a whole lot more office visits than actual help.

My other primary care comes from the place a block away. I was one of their first patients when they opened up. Now they are becoming their own little empire. The nice old guy doc is getting old and rickety like me. He still supervises things, but the younger whippersnappers do the hands-on stuff. I was given to a nurse practitioner. He has been great! Much more practical and down to earth than the average ego-driven, money grubbing doc. He actually wants to help people feel better. He and his boss have done more to help me than most in the big hospital system. I have great respect for them.

For the last few months, all of the docs, in all of the systems have been coming to the conclusion that I am a wreck that cannot be fixed. All started bringing the conversation around to the fact that it would be best to give me quality of life instead of trying to prolong it. Then they all started talking about assisted living, home health and then hospice. I have my days when I’m ready to quit trying so hard and allow myself to be taken care of. The problem is me. I have been fiercely independent much of my life. I didn’t want to do things other people wanted me to do…I wanted my own adventure. It’s a hard attitude to kick. I still feel that way. BUT….I sure would like help with laundry and cleaning. Those are the things that hurt my hernia the worst.

When the NP saw me the last few times, he has been offering home health and hospice. That’s not a place, it’s a service. They come help with challenges of daily living and then send in a social worker and other folks to help me transition from life to death. Every organization has their own philosophies on how to accomplish that. My understanding was that it was a gradual thing. To be in hospice, it’s expected a person has 6 months or less to live. If they are still alive, the contract gets renegotiated. There is also just plain palliative care that does not have the same time constraints. I need help to do things that are tough for me to do. Heck, I think it’s amazing I accomplish what I do!

The NP does not want to be responsible for putting a time limit on my life. He wants me to fade away as fast or slow as my body dictates. Some days he thinks it’s going to be sooner rather than later. I am not sure. Rough days and weeks make it seem imminent. Then a good day comes along and I think I will live forever. Then I get worse and reality hits. I think that’s all natural in the progression from fully functioning to not. Only God is sure about the ending of this story in mortality.

I have known people with incurable fatal diseases that lived for years, I have also known people who get diagnosed one day and are gone a few days later. Predicting death is more of an art than a science. There are indicators, but not much is for sure. I know my body has been failing, then rallying for years. I also know there’s a lot more wrong with me now than ever before. I’ve never died once and forever before. It’s all new to me. What do I know? The best I can do is listen to my body, my docs and God.

Another problem that just won’t let up is autonomic dysfunction. There seems to be nothing to do about it. My body doesn’t do a very good job of regulating temperature, BP, etc. When I stand up…especially by evening, I am very dizzy and SOB. My heart feels like it’s pounding out of my chest. I get right to the edge of losing consciousness. Then there are the problems with vision and hearing. I’ve had some form of dysautonomia most of my life, but the latest type is tough for me to deal with.

Soooooo many reasons why I am falling apart. It wears me out to be a wreck. No matter what I do, I then have to deal with the consequences. The original hospice company has never called back to start service. I also have not heard more about the new company the doc wanted to find. In the meanwhile, I need clean clothes. I have been waiting more than a couple of months since my endo put in the first request. I guess it’s just like waiting for disability payments to start. They hope you will die first.

OK….I did my best to calmly and rationally explain where I’m at right now. Why people make up stories about my life is beyond me. If you really want to know something, just ask. I have been impressed by the people who offer support just because I need it. That’s how most people are. Thank you🙂

new-eyes

And ohhhhhhh, my gosh! Yesterday’s storms caused all sorts of problems. There were 2 tornadoes in Utah and then today a funnel cloud. Here’s a good summary of the damage. Wow! Look how long it has been since there was a tornado warning in Utah. We didn’t get a warning yesterday, either. The power was out here for a couple of hours. Yup….it was a wild one!

last-tornado

Our high temperature today made it to 51 for just a few minutes. Most of the day has been in the 40’s. Lots of new snow in the nearby mountains and there will be more snow tonight. Keep warm and safe!

I sort of started out OK

missing-neck

Well, not OK at first, but after meds and a banana I started to perk up. Then the floor installers showed up. Lots of hammering and dragging and dropping things above my head. Then every 5 seconds, a screw going into the floor. I decided no matter how weird I felt, I was going to go somewhere else.

pain-face

When I first woke up, my neck could hardly flex. It was swollen up tight. As I sat around watching the news and doing diabetes stuff, my neck felt better. Each angle shows a bit different view of my swollen neck and creepy empty looking eyes😮

swollen-neck

Like I keep saying, my neck gets bigger daily. It’s swallowing my face. It’s hard to keep my mouth closed. It just sort of hangs open and droops. I got dressed and when I opened my apartment door, I could see the flooring guys outside. I asked them about how long it would take to finish the floor. They said all day. I had already checked the hourly weather, which predicted rain at 2 PM. I needed to be back around that time anyways.

clouds pouffy-clouds

These pics are from 2 different sides of the same TRAX station! I was feeling the zombie thing coming back while on the train. Oh, oh!

not-well

Even though I look funny, I don’t look anywhere’s near as bad as I feel.

vacant-look

I got off at 9th and the raindrops soon started. This pic is the same block as where I got off at the 9th TRAX station. My neck was getting even more painfully swollen.

feels-like-crisis

By the time I got home, I was very, very weak and dizzy. It was difficult to toddle to the bathroom and back. I could not raise my arms enough to reach the towel. My throat was having zillions of fasciculations, my mouth was watering non-stop and I was not always able to swallow. It felt like myasthenic crisis. Then I got numb down the middle so my whole left side was affected😮 Not this again!

ugh

My eye would slam shut, then open, then close. I had a bazillion quivers, twitches, zaps and zings going on in my entire body. It was getting harder and harder to breathe. I was wondering if I was going to suffocate or choke to death.

keep-simple

That’s when I went to my MG group for support. I told them what was going on. I asked for friendship and support. I got that…and lots of prayers. By the time my counselor got here, I was not doing well at all. It was worse than yesterday at the doc’s. I needed to take a breath in for every word or two. The dizziness was disorienting. He said my skin was turning funny colors from lack of circulation. Everything was hard to do.

with

I started to tell him about my near death experience 32 years ago. It was sooooooooo hard to talk with my broken voice, swallowing problems, lack of strength, numbness, and all that. A storm was blowing in. He jumped up and closed my window before the blinds blew away. It was getting dark in here and the wind was a big swirl. The sky was steely gray with patches even darker. As I told him about going towards the light and how that made me feel when Heather was born, there was a burst of light in the clouds that I just could not take my eyes off. Dan said the light came in here and he could feel the spirit. There was no mistaking God’s presence. I instantly felt better. I started to tell him I was better. My voice was perfect. I could breathe just fine. I was no longer weak. My neck bent in all directions.

love

I’m glad I was not alone for that! I needed his point of view to make sure I wasn’t just crazy. I often pray that God will use my experiences to help other people. There must be a reason he was supposed to be here for that. We are both LDS and have the same beliefs. There were other profound things we talked about. It was one of the most powerfully miraculous experiences of my life. I was talking about Heather when the light came from the clouds. I was telling him how I chose to come back to be her mother.

wow

The whole time I was taking pics of myself today, I wondered what that was about. I thought perhaps it would be the last pics. My eyes looked so dead in all of them that it creeped me out. I just took a pic of me now that I feel better. Now the picture taking makes more sense. I don’t know about you, but I sure have a different look about me now!

tender-mercies

I went back to my support group to tell them what happened while Dan was here. I read all the expressions of friendship and prayers they left for me. That’s when it hit me. That’s what happened! All of those people were praying for me. God heard them and blessed me with another day. My weakness has been replaced with goosebumps and shivers. I am sure Dan is feeling the same. It must have been freaky and miraculous to watch what happened to me and feel what we both felt. Prayer is powerful stuff! Ummmmmmmm…..wow!

no-fear

Now that I am starting to look around at the rest of the world….oh, my gosh! Tornadoes, power outages, floods…and more. While I was talking, Utah was hit by all sorts of weather. Gulp. Photos: Tornado & severe storm damage across Utah

rainbow

Poor prognosis

rough

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!

weather

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.

snow-in-mountains

active 16fires

It has been wicked bad smoky the last few days.

 

 

Not very perky

I don’t know what changed. Not only am I very weak, but my thinking has gone down the tubes. The highlight of my day was throwing out the old vacuum and recycling the new box. After that, I was too weak to even think. I’m not sure where the day went.

I stuck a note on my door and asked the pharmacy to put the insulin in my fridge. Then I fell asleep. Hours later, the phone woke me up. It took hours more until I was strong enough to get dressed and go look in the community room fridge. They never even came to my apartment. Oh, well. At least they left it somewhere.

Half a dozen people saw me and looked horrified. Yes, I look and feel that bad. My voice is quite broken and the rest of me isn’t far behind. I have not been able to hold a thought for more than a few seconds. I can type better than I can do anything.

People’s pity sobered me up. I hope I kept my face bland, but I cried all the way back to my place. I prefer denying the inevitable. Maybe I will feel better tomorrow?

I visited hell today

firesofhell

Hell is not what I left home to see. I went to Welfare Square to get free toilet paper, bananas and ice cream. The woman who helped me at the storehouse knew dizzy when she saw it. I asked her what I looked like. She said I got very red. I think I had 3 dizzy spells in less than 5 minutes. She told me her husband was often dizzy. The Relief Society president and the woman at the Bishop’s Storehouse told me they heard BYU ice cream was really good. I’ll come back to that.

homeless

I decided to go home on a different road from the one I went there on. Last time I went on 4 South, I said I would never do it again. Not sure why I rarely listen to my own advice. I was feeling curious. Many homeless services cluster around Pioneer Park. There’s the Road Home, the Rescue Mission, Catholic Charities, etc. The street from the 4th Street bridge, past the Rio Grande looks like a bombed out wasteland from hell. I challenged myself to go right up the middle of it for several blocks. I think it’s now my life-long trauma to take to the other side of the veil.

Just like last time, there is no way I would be willing to pause long enough to take a picture. When you hear phrases like wretched humanity or seething mass or sea of despair…..it’s not nearly strong enough to describe reality on those streets. Last time when I crossed that bridge, there were piles of human excrement near each buttress. This time there were fewer piles, but still plenty….and lots of pissing had obviously gone on. One guy was sprawled across the whole sidewalk and he was far gone in a drug stupor. Another man was blocking the sidewalk as he propped himself against the bridge and tried to find a vein.

I could not find a single picture online that depicted the horror and hopelessness I saw. Many people were in groups, flung on the ground atop blankets and under umbrellas. The most wretched of them were lying on the sidewalk. Even hell isn’t a strong enough word. It figures I could smell today. The stench was overpowering thanks to human excrement and rancid grease. It permeated my clothes and hair. It wasn’t always possible to swerve around excrement😮

I was sooooooooo glad to cross State Street on my way home. I am not a fan of being west of that dividing line. The rest of the way back to my apartment, I thanked God that I do not have substance abuse and addiction issues. Suddenly my downtown apartment building looked like a country club in comparison. A calm oasis. Practically Eden.

I put the toilet paper in the closet, my 4 bananas on the counter, and decided to have some vanilla ice cream with a banana for my lunch. My thanksgiving and gratefulness went down the drain when I saw and tasted that ice cream. It was like the overblown 99 cent ice cream of my youth. Yucky😦 I thought I must be mistaken. I looked up reviews online. It only talked about the sort of ice cream in a BYU scoop shop. Those pictures showed creamy ice cream….certainly nothing like the gooey foam in front of me. Alas, ice cream must have become like storehouse hot dogs. They used to be better than any hot dogs I could buy. Now they are cheapened bloated tubes of carbs instead of smoked meat.

BYU ice cream ingredients…milk, cream, sugar, corn syrup, nonfat dry milk, high fructose corn syrup, cellulose gel, gum, mono and diglycerides, polysorbate 80, carrageenan, salt, artificial and natural flavor, annatto color.

The only ice cream I buy, Trader Joe’s French Vanilla…cream, milk, sugar, egg yolks, natural vanilla flavor, carob bean gum, guar gum.

I know I am supposed to be grateful. I’m not. The church ice cream made my guts hurt. When it’s one of the only things left that I can eat, that’s rough. I will give the rest of what I got to somebody who will be grateful. The same Republicans that make policy choices to build lots of grand performance spaces on the public dime and to lure Facebook here, are the ones voting to create few affordable housing units and not funding voucher programs so people can get into market rate housing in decent neighborhoods. They are the same money-grubbing Republicans that are teaching new little Republican capitalists to make sub-par ice cream and hot dogs for the poor, so they can then use the savings to live in mansions while they thumb their noses at the old, sick, weak, addicted, etc. I’d hate to be them on judgement day!

Here are various quotes from news articles about Utah trying to woo Facebook…..

Utah offered an incentive package that included $185 million in property-tax breaks over 20 years plus another $10 million in sales- and energy-tax breaks and an undisclosed incentive package from the state.

It would cost about $3 million per job,” McAdams said Wednesday

West Jordan, though, went all-in, quickly setting aside a 1,694 Economic Development Area (EDA) on March 31. The rush let the city sneak in under the deadline of a new law requiring the set-aside of 10 percent of the value of the development for affordable housing. “We beat it by about 12 hours,” said West Jordan City Manager Mark Palesh.

A Facebook official reiterated that the affordable housing set-aside, which would carve millions out of the tax break, was not an option.

This is the best all-around article about Facebook in Utah

Last year, Utah was the lowest! We’re No. 51: Utah last again for per-student spending.  So the Republican clowns in government want to subsidize a multinational corporation with our taxes when we can’t even pay enough for decent education with those same tax dollars??? Government robbing from individuals to increase the profits of a company valued at $350 billion dollars in April this year!?!?!?!?!?!!!!!!

Yes, this must be my day to be pissed off after driving through pools of piss among the homeless! I don’t even know what to do with all this anger! It’s so not fair that huge swaths of humanity are treated with less respect than livestock. I doubt the homeless are tasty.

I got home before temperatures rose into the 90’s. I am very grateful to be sitting in front of my nice fan🙂 The weather forecast is all downhill. 90’s today, with highs in the 50’s by Friday. Sounds good to me🙂

To be fair….the LDS church considers the Bishop’s Storehouse food to be something to tide people over in an emergency. It’s just that $98/month SNAP from the government to spend on food…feels like an emergency every month. I am disappointed that the quality of food furnished is not what it once was. I liked those smoked franks. I’d probably like BYU scoop shop ice cream better than what I got today. As a perennially poor person, I’m tired of getting the stuff not good enough for those with more buying power. Yup…tired of lots of things to do with social justice and inequality. It always boils down to beggars can’t be choosers. Sigh….I hope we are all more equal in eternity. It is said that God is no respecter of persons….which means we all have an equal chance. That would be nice🙂

askgod

While I was sitting here feeling sorry for myself and every other person who finds financial life challenging, my phone rang. I recognized the delivery guy’s voice, with his accent from who knows where. I like him🙂 He put a Dirt Devil vacuum on my walker. I want to thank whoever sent that🙂 I have been greatly blessed to be surrounded by people who care about me. Thank you.

Today has been interesting. I woke up with minimal snot. After a few hours of blowing my nose….I could breathe and smell things. I don’t know what the secret to that is….but I hope it keeps happening. I’ve been through several other bouts of allergic snot and sneezing today, but there are actually times it goes away!!!! After weeks of this, a few hours of clear sinuses seems like an absolute miracle! I’ve been averaging a box or more of Kleenexes a day😮

You know what else is weird, but fantastic? My blood sugar has been easily controlled all day! I suspect it’s related to my allergies being less intense. So far my #’s are 78, 108, 135 and 96. Best control day yet on the insulin pump🙂 I have to put a new insulin reservoir in my pump sometime tonight. Here’s hoping my eyes work. I wish my double vision and blurry eyes would take a hike along with the snot!😛

belly-on-pillow

While I was checking the insulin pump’s tubing, I set my hernia on the pillow. Then I realized I should take pics of it. I’m leaning back. I shudder to think how huge the hernia would look if I sat up straight and then put it on the pillow😮

the-belly-point pointy-hernia

Geeze….that’s huge.

olivethinking

Every evening, birds fly in from all over the city and gather in flocks in the trees by the road. Then on some signal, they all fly to the poplar trees against the building. They must be packed in there tight. Olive is endlessly fascinated by the flight in every night and the take-off in the morning. They chatter and chirp amongst themselves for an hour or so……..then silence. The secret life of birds!

birds

I have not heard back from the home health and hospice people. I was looking forward to getting help with laundry. Maybe some day will come along when I have enough strength to do it myself? I am still very, very weak and have crazy blood pressure fluctuations. I come within a couple of seconds of fainting a bunch of times a day. It would really hurt to crash to the floor. Ouch.

vapors

It’s going to be OK

yes

That’s what I said when waking up 12 hours after I got in bed🙂 Those were solid hours of sleep, with no waking up. I needed that very much. The steroid life can be fun, but it sure depletes my strength and coping skills.

I keep wondering what effect…good or bad, the Xifaxan is having on me. I don’t know how I lived through the c-diff I got in Florida. That was months of debilitating gut distress. It reappeared in NY. Then it faded away after weeks of agony. Ever since WNV and then the hysterectomy and it’s complications, my guts were left in an inoperable mess. I was surprised that Xifaxan might offer some relief. The jury is still out. I continue to have bouts of internal bleeding and wicked bad gut pain. Something has changed though. I have not been taking my twice daily Miralax. I thought I would need that “forever”. But…are my guts getting better….or is c-diff coming back?

With gastroparesis, food stays in the stomach way too long. That slows down the whole digestive system. Miralax helped it all keep moving, whether it wanted to or not. I quickly learned to faithfully take Miralax, no matter what my guts were doing that particular day. With Xifaxin, the guts seem to be working better. I am a bit concerned that the balance has tipped too far the other way. Things feel suspiciously like c-diff again. One theory is this antibiotic has changed my gut biome so that the resistant c-diff bacteria have an opportunity to take over again. I hope not!

zap

For now, I have one more reason to be weak and dizzy. These quick trips to the bathroom are draining more than my intestines. It’s also zapping my strength. Ugh…..not feeling well at all. This too shall pass….right???? Triple ugh!

irony

Not liking food, then having it zip through me when I do eat is the sort of weight loss program I was hoping to avoid. Ironically, my freezer is full of decent food and I can’t bear the thought of eating it. Life is ironic like that. Years of struggling to get decent food and then decent food…but no hunger.

Hmmm….a conjunction of thoughts. I have been listening to one great program after another on NPR. I have also been answering questions in support groups and thinking about my gut distress. What I realized is that a curious mind needs lots of background info. All through life, I have been nosey…about plants, the sky, chemicals, why things are, etc. I could sort through the science I have learned and retained, plus read books and ask questions to help figure out stuff.

Cooking depends on a basic knowledge of food, then building on that knowledge with creativity. With a bunch of people from different cultures fusing ideas together, we got to this point in time of culinary understanding. Some people are looking for the new and different, some people seek to tweak the oldies and others search out food from history. It’s not very often that a totally clueless person puts together improbable ingredients to invent a new food we all love.

understand

 

Without basic understandings, we are all flailing around in the dark. Scientific experimentation is a basic need in life. Maybe it has been discovered a zillion times before, but when we discover something for ourselves, we feel ownership….and we are more likely to remember. When it comes to health, my life is one big long experiment. If we were all clones, that would be easy. If we ate ice cream, we would all have the same result…no worrying about some folks being lactose intolerant or some who gain weight just by looking at ice cream.

I have been trying to figure out my guts. Why do I either feel like a cannon ball in my belly or need to run to the bathroom after eating some things, but not others? The more scientific data, the easier it is to figure out. But…there also has to be intuition and random guessing. The more we know, the more we can extrapolate, the more we trust our gut instincts, the more we are open to randomness.

so-awesome

Someone said they did not want to take regular doses of Mestinon because they did not want to become dependent on it. That’s a statement from someone who does not understand the rudimentary facts about the myasthenia gravis disease process, someone who does not understand the difference between mitigating destruction and chemical dependence. There’s a lot to learn in life. We are all adding new info and are on different levels of our learning process. With MG, the immune system is hell bent on destroying the junction between nerves and muscles. To treat MG, we can either add more of the chemical being destroyed, or try to regulate the immune response. With better understanding, better tools and lots of experimentation, someday there will be better treatments.

allowed

There must be a reason why we understand the most at the end of life. It seems like the other way around would be easier. I often wish I had more understanding as a mother. But how smart could I have been in my 20’s?😛 I had to live through 60 years of experiences to see what action led to what consequence and what sort of person is better to trust than another. I have both learned greater compassion and better discernment….yet it’s never enough. I like the belief that after all this learning, it’s not wasted at death.

not-yet

Spencer W Kimball said….

“We are limited in our visions. With our eyes we can see but a few miles. With our ears we can hear but a few years. We are encased, enclosed, as it were, in a room, but when our light goes out of this life, then we see beyond mortal limitations. …

“The walls go down, time ends and distance fades and vanishes as we go into eternity … and we immediately emerge into a great world in which there are no earthly limitations.”

President Brigham Young stated…

“I shall not cease learning while I live, nor when I arrive in the spirit- world; but shall there learn with greater facility.”  

Orson Pratt explained this ability by declaring… 

“Instead of thinking in one channel, knowledge will rush in from all quarters; it will come in light like the light which flows from the sun, penetrating every part, informing the spirit, and giving understanding concerning ten thousand things at the same time; and the mind will be capable of receiving and retaining all.”  

This is a really good article. Life After Death: 6 Insights into the Spirit World

What happens after we die?

second-coming-jesus-christ-mormon

Spent, depleted and far gone

medtronic

Every morning when I first wake up, I spend at least an hour trying to stop drowning in snot. This is ridiculous. Steroids, Benadryl, Zyrtec and Flonase….and it’s as if I am taking none of them. I should probably not go into graphic detail, but swallowing and breathing get harder each day. Ugh….an awful night. I was so hyper from steroids that I did not go to bed until 3:30 AM and I slept very fitfully for 4 hours. The whole time I was shivering and ice-cold. I cannot warm up this morning, either. It’s all my internal systems messing up because it is not cold in here.

Once I took steroids yesterday morning, my blood sugar shot way high. No matter how much I corrected for it all day, right up to bed-time, it was impossibly high….like around 350. My insulin pump has maximum boluses and it would not correct more than that. Today I need to learn how to supplement with shots and tell my pump what I have done. I have no clue how. The reason to control my blood sugar now, no matter how long I have to live is because when it’s that high, I feel like I’m going to die right then. My heart pounds and I alternate between hot flushes and freezing cold. It’s all around not pleasant.

This in between place between life and death is confusing and frustrating. I still want to do things, but I feel soooooooo sick. Meds can make me hyper, but the sick never goes away. I woke up quivering and tremoring head to toes and it’s not letting up.

get-bent

Without eating, my blood sugar went high again today. I  have been going through my books and online sources to try to figure out why. Suddenly there was a big air bubble in the insulin reservoir. It wasn’t there every other time I looked. All sources told me to try putting in a new infusion set. I took the old tubing off me to find that it was probably delivering only a fraction of the insulin, if any at all. The tip of the tubing was bent over under the adhesive that sticks it to my belly. I got out a new set, filled up a new reservoir, put it in the pump and kept getting the NO DELIVERY alarm. I took the reservoir out and repeated the correct steps 3 times. No such luck. I called the 800 help #. The guy was very nice. While trying to follow his instructions, I accidentally stuck my hand and the tubing to the adhesive. That meant I had to get out another set. I get 10 a month and have now breezed through 4. Medtronic says they are shipping me 2 free sets to make up for the 2 wrecked due to operator error.

So once I tried with the second set today, it worked just fine. But….when the adhesive stuck to my belly, a section of tubing was stuck between me and the set. I very carefully got it unstuck and hope I did not pull the tubing out of my skin. Learning how to do this whole insulin pump thing is a lot to remember and do just right. Try doing all this while quivering and shaking…with double and blurry vision and very little strength. Good thing no one was around. I could tell my anger, frustration and lack of patience rising higher than my blood sugar. I hate being incompetent! Sigh….

simons-cat

Of course it was right at that point that Olive jumped into my supply box, sent insulin pump gear flying in all directions….while batting the pieces around and trying to chew on them. At that very moment, I started sneezing uncontrollably and getting snot everywhere. GAH!!!!! Of course for a few hours just before this, I had nuclear meltdown diarrhea and horrid chemical smells were coming from my breath. I hope it wasn’t DKA! I was getting too weak to be useful for anything. It was now time for brain melt down. The help line guy very politely informed me he could not send me a new brain or body, but he’d like a new brain, too. He was very nice and calm🙂

cat

It’s a good thing I had just watched 2 videos. I never get tired of Simon’s Cat on YouTube. He is so right-on about cats🙂

helpful-cat

Wiped out exhausted today! It’s my own fault for taking advantage of the steroid high to do more than my body is otherwise capable of….but it was fun and worth it!😛 Is there enough rest to ever get me back on a more even keel? I hope so. I do not feel here. Olive knows there’s something new wrong with me and when she’s not trying to chew on medical equipment, she is hovering all around me…wanting to breathe my breath, touch my face with her paw or be petted. And let’s not forget the cat treats! While reaching for the bazillionth tissue, I realized I was myasthenia gravis weak on top of everything else. I got out the Mestinon and Olive jumped on me, while meowing, because she was positively starving to death. Of course she knocked the med bottle top out of my hands. Now we are both medicated with our drugs of choice. Olive has moved to a chair for nap time.Thank you again for the kitty treats. I had bought a $1 bag of treats at Smith’s. She’s glad they are gone, because they are not up to her standards. Olive’s enjoying the party mix🙂

oliveschairs

I had to drag out the folding chair for all the nurses lately. The mean nurse made the rung come out of the red chair. Figures😛 Olive is just a little black blob. She likes both of those chairs, the two power chairs, her suitcase bed, my bed and the top shelf of a dresser for a variety of sleeping spots for each mood. She only goes above the refrigerator if she’s miffed at me or guests.

catssleepanywhere

I hope nothing more “interesting” happens today. I seriously need a long, restful nap before the next disaster or crisis comes along.

may-you

The world moves faster than my brain

It seemed like months went by without much happening and then a flurry came along. Most every day now I have to make big decisions. Part of it is that decisions are much bigger if there’s only time for a few more. Much of the day, my brain is slogging along. Usually there is some magic spot where all my meds are at their most effective and I can freely think. The rest of the day, I am anything from too hyper to practically brain-dead. Seriously…I catch myself forgetting to breathe.

purpose

I find myself drawn to music more than I have been ever since I got West Nile Virus. It kind of freaks me out that I went for a year without radio, TV or CD’s. My brain needed a lot of healing after WNV. Light, sounds, smells….they all hurt. Now I turn up my little Panasonic stereo to 30🙂 I like feeling the music!

This week there have been workers upstairs from me. For sure they have been painting. I don’t know if new flooring has been put down yet. All too soon, it will be ready for occupancy and I will get a new neighbor. Then I will have to be quieter. And it probably won’t be all that quiet down here. Live it up while I can!

I should mention that I talked to the witchy hospice nurse on the phone before I had that bad dream. It was definitely a premonition of things to come. She’s very abrupt. I asked her how old she is. She said 67! I think she has spent too long dealing with patients of every sort. It was as if she had no patience for the sick and afflicted. We are bumps in her road. Temporary irritants that will soon be replaced by the next whiny, sniffling blob of human flesh. Makes me wonder why she is still working? Need? Some sort of satisfaction? Malice? The more I think about her, the less I want anything to do with her hospice company.

Perhaps it really would be best to be in assisted living? But….I bristle big time at the thought of anyone but me and God having a say in what I do each day. Whenever there is any feistiness left in me, I want to use it up…not follow orders.

eternal-beings

I knew it would be good🙂 No steroids until 5:30 last night and then another dose at 7 AM. A potent dose of steroids! After my diabetes educator left this morning, I was revved up. I knew I needed to take advantage of all those steroids. I got distracted on my way out the door. I ended up giving a mini discussion about eternal life…as in our pre-mortal spiritual existence, getting a body, then moving on through eternity until we get our perfected immortal bodies at resurrection. I talked about how we agreed to take on the challenges we have faced in this life…before we were born. That some people choose particularly difficult things in order to help someone else or get great blessings. I talked about near death experiences that I have read about. Amazingly that seemed to have a profound effect on a couple of people.

eternal-perspective

By the time I got out the front door, I had no idea where I was going when I left my apartment. So….I got on TRAX and decided what to do next. When I got on the train, it was packed so there wasn’t even enough standing room….and they all had on matching backpacks. It’s the annual dōTERRA convention in SLC. Everybody was in a good mood. I asked the woman who climbed over me where she was from. Near Seattle in a town I can’t remember. We all talked and joked around. It figures one of her questions would be “where are you going?”. I shrugged and said I had no idea, but I had a free transportation pass, so it didn’t matter. By the time they went from hotel to convention center, we were all best buds. It was fun🙂 But then I really did need to decide where I was going to get off. I was thinking Rancho Market. I was not interested in the usual foods I used to buy there. I was fixated on buying plátanos dominicos….baby bananas from Mexico.

3-little-piggies pig-butts

goat-buddies

But….the next stop down from Rancho is Fairgrounds. With temps in the 60’s and a blue sky with nice breeze….I went to the fair! Every year I have lived in SLC, it has been too hot and I have been too sick to go. The stars aligned! I was hyper and it was a wonderful day. I wheeled to the gate and bought a ticket. First I looked at pigs, sheep, beef cattle and dairy cows. Wow! They all looked like meat on legs. Not the farm animals of my youth. I could practically see the bacon and steaks and lamb on the hoof. Those meat animals were hefty….yet the dairy cows were bigger and bonier than anything in the Vermont I used to know.

kid-ride

ferris-wheel midway spinning-dinos

spook-house monster-truck creepy-guts

fair

I wandered around the midway to soak in the carnie atmosphere. At first it was mostly mothers with small kids. Later it was families.

crazy-quilt walking-stick denim-quilt

I went in the 4-H building full of crafts, sewing, food, etc done by 4-H kids. And then I think I managed to find all the buildings but floraculture. I wonder how I missed that? When I was a kid, I entered food in the NY State Fair, beginning at 13 years old. I wasn’t in 4-H, so just entered with the adults. I got something like 29 ribbons in 2 or 3 years. Going to the fair today brought back lots of memories…..for lots and lots of reasons. I was surprised that the Utah State Fair was smaller than a county fair in Vermont….and nothing at all like the hugeness and complexity of the NYS Fair!

sexualized-babies

I sat by this stage and watched a few different groups do dance and singing. They were cute. They were talented…but in every single show, I was troubled by the extreme sexualization of young kids. It was glaring. After awhile, a bunch of old folks got up and left….so it wasn’t just me thinking that. I think us old folks were embarrassed for them. There’s a whole world of dancing and singing that’s not hyper-sexual, so why did the adults think this was a good idea? Gave me a lot to think about.

milky-way-galaxy

The Milky Way

Then the Smithsonian traveling show caught my eye. Totally awesome pictures and explanations. Since I have been reading a lot more about space, thanks to space weather emails, this exhibit was especially interesting to me. For some reason, light years suddenly made more sense…after a lifetime of hearing it. Light from the sun gets to us in 8.3 minutes. There are 525600 minutes in a year. The Milky Way is 100,000 light years across. Galaxies are a loooooong ways from us….like in this example…

galaxies

Does that blow your mind? The colorful Milky Way picture was near a speaker playing music about space that gave me goosebumps. I could not take my eyes off of the burst of light that is blue-white in the pic. I just kept thinking that looked like the light when I died…the one I wanted to go to. Right there in that exhibition hall, tears started leaking out. I felt powerfully drawn into that light. It was like a deep remembrance and I was mesmerized. I did not want to move….and when I did move, I kept looking back at it. Intense!

You know what else was cool? For each of the pictures of the universe, it told what telescopes took the picture. I have been in or near many of those. While looking at various exhibits, I kept realizing that I had been many, many places mentioned all over the fair. I have been to all sorts of the amazing places in North America…and done a bazillion amazing things🙂 It would take lifetimes to go to them all and do them all….but I sure have gotten around!

platano_dominico

After the fair, I went to Rancho Market. While searching for the right bananas, I realized what I had originally left home for….I was going to go to the LDS church’s Welfare Square to pick up toilet paper, bananas and ice cream. I didn’t even know they had ice cream until this week! I just cannot stomach other foods. I watched a Dutch oven demo show at the fair and they passed out a very small slice of banana bread. Even that tiny bit was like a cannon ball to the gut. Geeze!

melty-face

This is me coming home on TRAX. Notice the dōTERRA backpack? There weren’t as many of them on this train, but there were too many to get off at my stop. I waited to get off at 9th because there was no time to get off at Courthouse in the crush of humanity headed for the Grand America Hotel. I had used up every ounce of my steroid strength at that point. My neck was even huger and my face was experiencing myasthenia gravis melt. By the time I got home, that droopy eye was closed shut. I don’t even recognize me any more. Sigh….

secret-happy