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!

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