I live in the twilight zone

no-free-lunch

Did you watch this morning’s video? WordPress says nobody did, but YouTube says 36 people watched it. Anyway, I have been in tough shape for a while now. I made it to the MG meeting. I was bummed I was too weak to eat. I had 3 spoonfuls of a yogurt, berry, granola parfait, but my chewing and swallowing weren’t working. Figures! Free, prepared food and I didn’t eat the lunch.

It wore me out to get to the meeting, then sit through it. I mostly wanted to meet people. That was the best part :-) By the time it was over, I had been sitting still in that room for 3 hours. It wasn’t any easier to breathe and I felt like heck. Lots of people had been telling me I should go to the ER. I stopped near it and waivered back and forth about what to do. My breathing wasn’t as bad as in February, but it was getting there. I was wicked bad dizzy and had that stupid numbness right down the middle, on my left side, etc, etc……

The more I thought about making it back home, the scareder I got. I went up to the ER window and they took me right in. That’s when things got very weird. The ER doc called my neuro. My neuro told her I only have suspected MG and that I have not gone to the University for SFEMG, despite him ordering the test!!!! WHAT?????? I told the ER doc about my 5 days in the other hospital, my 5 in a row IVIg’s and the discharge papers saying I have MG with acute exacerbation.

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The ER doc then looked as confused as me. She wanted to know if my neuro had known I was getting IVIg’s and if he had visited me in the hospital. I looked at her incredulously and said yes. And we did that back and forth about several other things. I asked her if maybe he got me confused with someone else??? She wanted to admit me to that hospital and transfer me to the U to get all sorts of testing.

Then that doc was done with her shift and a guy ER doc showed up. We went through the same conversations. He basically treated me like a complete and total idiot with no grip on reality. I told him I had to be off Mestinon for 4 days before a SFEMG. He had no idea what I was talking about. He asked what I wanted to do. I said go home!

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I am soooooooooooooooooooooooo confused!!!!!!!! What the heck just happened? Did my neuro just throw me under the bus? Why? What has all this got to do with my altered online medical records? Some time, maybe 2 weeks ago, a guy called from the U to tell me they had received a referral for me to get an EMG. He told me when they were ready to schedule the test, another person would call and set it up. I asked him if he was sure it was an EMG? Was he sure it wasn’t for a SFEMG? He confirmed EMG. No one has called me yet. The guy on the phone said it would be sometime in May…..so I haven’t been worried.

What freaked me out was seeing a blood pressure of 260/133. I never remember it being that high in my whole life :-o Another weird thing is that my d-dimer was perfectly normal. A couple of years ago, that same hospital told me mine was just naturally high and not to worry about it. My d-dimer was often high in the Adirondacks. See? I am cured of just about everything! :-) Now I am just waiting to look, sound and feel like I no longer have MG or anything else! :-)

No one can even begin to understand how jerked around I feel by the health care system.

I am tired to the bone and sore from the effort to breathe. My discharge papers gave me the diagnosis of “weakness”. Good to know what I have been suffering from all these years :-) I have a regular doc and a neuro appointment next week. Should be interesting. My medical stuff has more plot turns than any mystery novel. Sigh…..

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I look weird tonight. The halves of my face don’t match. My least drooped eye looks creepy. My whole face is swollen. What next? Sigh…….

WeirdWendy

Somebody turned gravity waaaaaaaaay up

When I got out of bed to make a trip to the bathroom in the middle of the night, I was barely conscious. My eyes would not stay open and I was unbelievably dizzy and limp. All night long, my muscles buzzed and quivered. I also drooled profusely. When I woke up this morning, my lips were swollen way out from my face and my entire head is swollen up. I feel like only about the top third of my lungs are breathing. I can barely reach out for my cup of water and take a swig. Oh!!!! I forgot! When I took my middle of the night meds, my eyes stayed closed. I tried prying them open, but they wouldn’t work. Each time I went to take a drink, I missed my mouth. I tried focusing real hard and I still could not find my lips to take a drink. That was creepy :-(

I feel very out of it and not here today. Again, my hands are heavily resting on the keyboard. I can barely move my fingers around enough to hit the right letters.

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Here I am with droopy eyes this morning. In my MG support groups, people have been urging me to go to the ER. Instead, I wasted the whole day waiting for my neuro or his staff to call or write. I sent the following email to the nurse and the office manager and asked them to give it to the neurologist.

I have been slipping downhill faster and faster. The 2 Medrol dosepacks from another doc kept me breathing and brought back my voice, but they have worn off now. I am weak and droopy and it’s getting harder to breathe. I can barely open my eyes and the fasciculations keep happening all over my face and down my throat.

Got any ideas? Since the last request for IVIg was denied by insurance, the Disability Law Center has asked for a hearing in front of an administrative law judge. 
Here’s a picture of me this morning. As time goes by today, it feels like the left side of my face is trying to melt off. I am again weaker on my whole left side and my tongue and face are getting numb on that side.
I had a heck of a time trying to eat breakfast. My hands were so weak that the food shook off my fork on the way to my mouth. Then the food would just sit part way down my throat. Very early this morning, my eyelids were drooped totally closed. Each time I tried to drink water with my meds, I missed my mouth with the cup.
It’s all feeling creepy again :-(
Maybe I don’t sound scared enough????? Maybe I should have used other words????? I thought this was good enough.
Since I wrote, my diaphragm has become paralyzed a few times. My ribs hurt and my chest is sore, from trying to breathe. There were times I realized I was barely breathing and times I was breathing faster and faster. When I was in ICU, it freaked me out when the monitor kept dinging and said I was only breathing 6 times a minute. I was just too weak to breathe any more than that. Sigh…..
When I stand up to head towards the bathroom, I instantly get wicked bad short of breath. By the time I get back to my comfy chair, I am doubled over, bent forward and sucking in air as if my life depended on it :-p
Gee, what’s going to happen next? Will I get better or worse? Sigh…….soooooooooo tired………….

#ihaveheardofmg

Right now there is a national meeting about myasthenia gravis going on in California. This is the latest YouTube version of an MG awareness campaign. I am at 3:13 :-)

FotorCreatedMG

Have you heard of MG? Myasthenia Gravis (MG) is a neuromuscular autoimmune disease that affects the use of muscles – normal communication between the nerve and the muscle is interrupted, leaving the muscle weak and fatigued. It affects voluntary muscles used to breathe, see, hear, swallow and speak. There is no cure but there is HOPE! Please help spread awareness and share this post. ‪#‎ihaveheardofMG‬

Somebody listened to me!

When I wrote to the voice doc, he said he was going to tell the head voice doc what I said. Gee…..it’s about time, don’t ya think???? I woke up at 1:30 AM burning up, and there was a messsage from the head guy. “Thank you for the update and the report that treatment of MG helps your voice, and that the vocal exercises were too fatiguing and counterproductive. This is good feedback for *** *** and myself. I hope the neurologists can help you get the needed treatment.  *** ****, MD”  Well, at least me going through all that should help the next person with MG and dysphonia who shows up. I feel used and abused. I hope it was worth it.

Lack of steroids is a PITA. It used to be that sleep would strengthen my muscles for awhile. I totally hate waking up with my eyes drooped even more than when I fell asleep :-( My head and neck are wicked bad painful. I have flung the window wide open and have the fan pointed at me to cool down. Olive is busy searching the night for things that move.

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Usually, I turn most of my free yogurt into smoothies. Just now I ate one so I could take my meds. Wow! That was really good! :-) It’s called Oh My Yog! I had the one with wild Quebec blueberries. I highly recommend it. I remember the old days when Stonyfield yogurt was a few cow operation in NH. The owner was always at NOFA and MOFGA meetings. Now they are a giant company. The same thing happened with Brown Cow Yogurt in NY. I get that one free, too. But what I REALLY miss is Butterworks yogurt in Vermont. Oh. My, Gosh!!!!!! They make the best yogurt in the whole world. And the heavy cream they sell is soooooooo thick! I always loved going to visit their farm :-)

My droopy eyes keep getting in the way of me reading. I used the fingers on both hands to lift up my forehead skin. My eyes opened and instantly my headache and neck stopped hurting. It’s amazing to think how much effort we all use, seemingly effortlessly, to keep our eyes open and hold our heads up. I hope you all appreciate the abilities you have!!!!!

FNB30

 

Went back to bed and slept a few hours. Then it was time to go to FNB. Strange selection. 4 bags pita chips, vegetable broth, almond horns, 4 boxes organic mac & cheese, ginger cookies, a stack of peanut energy bars, Brown Cow maple yogurt, candies, an jalapeno and grapes. I got all excited about the almond horns. I thought the expiration date said 4-31-15. I ate one and it was pretty darn stale. I retrieved the box and it said 1-31. That’s when I realized duh….April only has 30 days in it. I gave the peppermint patties to my next door neighbor. I loathe peppermint and she likes it.

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Gouty_arthritis

About 4 PM, my body went nuts all over. My skin is creepy and burning. It feels like every single lymph node from head to toes is swollen and every joint hurts like heck. As I wrote that, I realized that last night was the last of my cherry syrup. Does gouty arthritis come back that quick? Booger brains! I forgot to take cherry capsules in its place. See, good thing I write down my life. It helps me to remember. Feels like lupus and WNV stuff to me. My hip muscles are cramping, my hip and shoulder bursitis is mad and my belly is swollen way out and is hot to the touch. My whole body hurts sooooooo bad! I was even tempted to take a pain pill earlier, but didn’t. So far I am practicing enduring. I am working on the same bottle of pain pills I got 2 years ago June. I think I have written about every single one I have taken. Quite a few people here go through bottles worth each week :-o To the best of my recollection, I have never worn a pain patch. One of those at the base of my neck or my left shoulder might work. This is some very intense pain :-(

lymph_node_in_human

shoulder-bursitis

Earlier, I stripped the bed so my laundry lady could do the laundry. Right in front of her, I started screaming. Taking the sheet off made rows and ridges of muscle cramps go all over my lower back. I never remember that particular sensation before. Mega pain deep into my spine.

pain

 

Whine…..whine……whine……

Someone has been messing with my medical chart

charts

The online portal to access my tests and health records has changed in format. I was surprised when I signed on. Then I went to the list of health problems. There was one new one and several were missing. And the dates are screwy. Now my chart says “butterfly rash”. Who put that there? The docs most concerned about my lupus are not part of the health care that’s online. The listing for MG exacerbation…..MG crisis, is gone. There is just the regular listing for myasthenia gravis from the first time I saw my internist in 2012. And the listing for MCTD is missing. Is someone sanitizing my records in preparation for the meeting with the administrative law judge? Hmmmmmmm……..

quackquack, quack

I am sooooooooo tired of insurance and healthcare shenanigans in Utah! It never ends.

brokenvoice

Now that my voice is back to being broken, I wrote a letter to the doc who was studying my voice and wants to teach me how to talk. I reiterated that my voice gets better with antibiotics when I have an infection and from steroids and IVIg to combat my muscle weakness. No amount of trying to “teach” me how to talk is going to make a difference. The last voice appointment pushed me over the edge and caused me to have prolonged difficulty breathing and profound weakness. I thanked him for caring and for what he taught me about voice. Geeze…..I wish more docs understood what it’s like to be weak from MG. It’s not like being weak that regular old people feel. The neuromuscular junction is being trashed thanks to an autoimmune response. It makes the muscles not work. Duh!!!!!! I have spent most of my life being made to feel guilty for this sort of thing. It’s no different than being blind. Blind people aren’t made to feel guilty for not being able to see. Grrrrrrrrrrrrrrr!

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Being blind has been on my mind a lot. I think it totally sucks to be blind….no doubt about that. But ever since I met Rhett, I was fascinated by how much different blind people are treated as opposed to other handicaps. Some states even give higher disability checks for the blind. And it has better perks than some other disabilities. I never understood why people who work at the blind school and are highly capable individuals are automatically given unlimited Paratransit services. It’s frustrating to need a dog and/or a cane, but many of those folks had bodies that worked just fine. Why was their privilege automatic when it isn’t for people with other challenges? I also noticed the bias many times at church and among church members. It’s once again a matter of where a person falls on the “deserving” ladder. Blindness is mentioned by name in the Bible, myasthenia gravis is not.

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You might be able to tell I have grown weary of fighting the system. Understatement of the year. Why is it so hard for the bureaucrats and society to treat all disabled people with dignity? Why are these artificial divisions created that pit one sort of disability against another? Why is it so hard to just give and get help?????

firestorm

Ohhhh….that was so cool!!!! My whole forehead and face have been severely drooped today. It was making me crazy. My lids were covering part of both pupils and the weakness in my face was physically painful as it dragged down my mouth. Then I had an electrical storm and muscle spasm all around my head and POOF! I am better able to open my mouth and the weakness lightened up. I can even both turn my head and hold it up easier. But….I can also feel some creepy headache taking hold. My hand muscles are twiching and spasming. Argh! How about they all go far, far away?!?!?!?!?

smog

The sky has looked blue the last couple of days, but dang, the smell of Siberian smoke is obnoxious! Then I went to read news stories. The Lung Association says Utah has bad air….not just bad for here, but compared to the whole country. 7th worst in the country.  http://www.sltrib.com/news/2452992-155/lung-associations-most-polluted-cities-salt-lake

simple

For days now I have been looking around my apartment and thinking about what I could give away and not miss. I don’t own much STUFF, but I could still pare down. I keep getting a stronger and stronger urge to move. It’s a tough decision, though. I never want to be homeless again. At least in SLC I have a fairly decent apartment, public transportation, and Food Not Bombs. The unknown is well, unknown. I don’t want to live here because of the IVIg policy, no dental, low benefits, politics, air pollution, crime and the over-all culture. But is it any better somewhere else? Where?

moving

If someone said you have 24 hours to pack up, a moving van is coming to take you to “xyz”, I would get right on it. I stayed in Florida 3 years, the Adirondacks 3 years and now Utah 3 years. That seems to be my expiration limit. Somehow I managed to love Vermont most of the 26 years I was there. I didn’t love winter, though. Sigh…it’s my parent’s fault. They named me Wendy, which means wanderer. My very favorite way to live is wandering around. Nowadays I can only wander tethered to medical equipment, doctors and hospitals. Dang it!

 ivig

Hot day in the ‘hood

fatigue

Wunderground says it was 89 degrees today. At 11 PM I still have the windows wide open and a fan pointed at me. I spent the day either in a stupor or napping. I don’t remember most of today. Fatigue is my life. It’s a strange sort of tiredness that feels more like passing out than napping. No amount of sleeping takes it away. I can see that I am a poster child for this poster. It’s cellular shimmy time. I can feel that there’s an uptick of autoimmune stuff going on inside me.

FNB28

 

Good stuff at FNB today! I was the very first person in line :-) Pineapple, sourdough bread, plantain, banana, avocado, assortment of peppers, mushroom, 3 onions, 8 tomatoes, red potato, 2 zucchinis, summer squash, 2 cups yogurt, 4 eggs, mango, lime, veggie wrap and black bean/yogurt/roasted veggie dip. I had the veggie wrap for brunch with my own added pulled pork. Dip with the last of my tostados for supper. My snack was a slice of sourdough bread with some of my homemade apple butter. I love easy stuff when I am exhausted :-)

The BEST news of the day is that Bernie Sanders is going to announce that he’s running for president. I just can’t get excited about Hilary and Bernie is light years better, anyway. Bernie spoke at my Step Up For Women graduation back when Heather was 2 or 3 years old. I did carpentry, welding and forestry. Looks like they are into a way more interesting variety of things nowadays! http://vtworksforwomen.org/

I was just thinking about this today. Part of our Step Up training was working out in a gym. The first few days, I could lift more and do more than any other women. Then one day I couldn’t lift any weights. I now know that was the MG. For years I endured my strength just suddenly disappearing. I was always made to feel guilty for that….as if I were a malingerer or it was all in my head. Sigh…..

Anyway, back to Bernie. He did good things as mayor of Burlington and he just kept getting better and better in Congress. I see him as one of the only voices of reason out there in a vast, barren bought-off political landscape.

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Cry baby

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The absence of steroids keeps getting more painful. My voice is very gone :-( I was very, very weak Monday morning. Remaining upright in my comfy chair was quite a challenge. A couple of times I decided to cook something, got up and was missing a crucial ingredient. I briefly thought about going shopping, but I was too weak. I tried to talk on the phone and it was a fiasco. Nobody could understand me.

After feeling sorry for myself and being mad at gravity, I got up again to cook. I needed eggs. Made me so mad that I put on clothes and started for Trader Joe’s and Smith’s. On the way, I bumped into a woman I like and we talked for a while. Well, she talked and I made a lot of hand gestures. While we talked, the sun would strongly hit my skin, then hide behind clouds.

I stopped at a state building to ask about my insurance. The security guard couldn’t understand me much. He told me to get in line. I waited my turn and a refugee family barged in front of me. I used to like people from other countries. Lately, my tolerance is being strained. The guard rushed over to me and said to wait, he would help. I burst into tears. He looked very distraught. I just wanted out of there. He followed me to the door, begging me to come back.

I was soooooo frustrated that I couldn’t be understood on the phone, so I figured I could make myself understood in person. Then I was treated like a non-person because I am in a wheelchair. The man I was trying to talk to did not even acknowledge me and the refugees looked at me with contempt.

demons

The reason that bothered me was more than my wheelchair and my voice. At FNB, we have at least half refugees. Most are incredibly rude. They just love to leave their spot in line and cram themselves in front of me. Over and over and over, this happens. People yell at them and try to pull them away, but they play stupid. Then most of them try to grab more than one item per box. The FNB volunteers spend a lot of time scolding them and trying to make them put things back.

I understand most have come from war torn countries and have probably lived through awful stuff…..but leave me the heck alone! It seems to be a cultural thing to look down on disabled people, and try to take advantage. It gets old. It’s not fair to me. I run out of good will and charity when they sneer in my face :-( I also get tired of them being coddled and me being ignored. This happens every time I go to my internist’s office, too. I feel like the refugees get the red carpet and I get kicked into a corner. Apparently it’s more of the “deserving poor” pecking order. People feel sorry for them. Not so much for me. I don’t want special treatment, I just want us all to be treated the same in public places.

So, I cried all the way to the grocery store. Each time I thought I had my tears under control, they popped out again. It felt like the good ol’ West Nile Virus blues. Going without steroids is very, very tough :-(

snap

I ended up blowing most of my SNAP money on a pork roast, eggs, kefir, mushrooms, avocados, etc. It wasn’t hard at all to spend more than $30. Of course, that ticked me off, too. I had spent the morning reading hundreds of comments from 2 news stories about the food stamp challenge as done by various celebrities, reprters and bloggers. The comments were full of venom for SNAP recipients and most thought we should be happy to eat dried beans, potatoes and pasta for every meal. If I lived in a poor country, and we were all in the same boat, I could deal with eating that stuff as I slowly died of diabetes….but I live surrounded by people who can afford to eat meat and other yummy stuff. It’s a false economy to pay for lots of insulin for me and hardly any quality food.

All evening on Monday, the smoke got stronger and stronger. I wondered if there was a fire downtown. This morning, I woke up choking on the smoke. Nobody is saying anything on the news, so I guess I will just assume it’s more of the Siberian wildfire smoke. It’s gross. Of course it bothers my lungs more than most. My ribs hurt extra bad today from the struggle to breathe.

Oh…the darn muscle spasms and repetitive twitches are back all over me. I am getting to know the pattern all too well about what gets better from steroids, then worse when I am not taking them. My eyes are way droopy and my vision is non-stop blurry.

Awhile back, I went to the dermatologist and found out I had seborrheic keratosis. Most pictures of it show brown spots and the spots that look like melanoma. The white flakey spots have been making me crazier than usual. I searched and searched, trying to figure out what they are. I finally found pics that looked just like my feet. It’s called stucco seborrheic keratosis. When I scratch them off, my skin itches like crazy. I feel better now that I read about them. They sound obnoxious, but not dangerous.    https://www.aad.org/dermatology-a-to-z/diseases-and-treatments/q—t/seborrheic-keratoses/signs-symptoms

I hope I can think better today. Much of yesterday my brain was AWOL. It’s scary and frustrating when I cannot make my brain write coherently or remember stuff. Yesterday I saw my first roses. I look forward to start taking rose pictures again :-) At least I can do that on days I can move around enough to hold the camera up.

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I wish I could quit caring about injustice

earth

I was born an activist. I grew up having very strong opinions about the environment. I spent most of my life leaving a small footprint and trying to do the the right and good thing. The more a person looks into environmental issues, the more it becomes obvious that the real root of the problem is greed. Usually corporations will do just about anything to make a buck. They don’t worry about the collateral damage such as worker’s health, worker’s pay, pollution of air and water, letting loose chemicals and poisons, and in general, fouling the nest. In order to keep doing this, they need to own government and regulators. Anybody who notices must be silenced. No taking pictures of bad agricultural practices and no bad-mouthing the mining industry. Fracking? It’s illegal to speak of the chemicals used. Earthquakes, undrinkable water? Must be a coincidence. How about that nice “clean” nuclear power? They love to say the wastes will be properly stored and then the wastes are found in rusted out radioactive barrels and stockpiles.

Utah sucks. (Editorial opinion) The air pollution here in the valley is awful. We have a big company that burns medical wastes. There are petroleum companies making fuels. And these places are near population centers.

Medicaid-map

The schools here are way underfunded. I wouldn’t send a kid to one! This state has yet to adopt the Affordable Care Act in its entirety. Many thousands of Utahns are shut out of medical care because they have just enough money to not be eligible for Medicaid, but they are too poor to be part of the state healthcare exchange. The legislature thinks working folks need more rugged individualism. Funny how that same rugged individualism is not expected of business.

So what is the legislature doing now? They want to spent $53 million of taxpayer money so mining companies can get a deep water port built in California, so the Utah companies can send coal there to be shipped overseas! The rich and influential get bolder by the day…..taking away resources from regular people and giving it to people and corporations that already have plenty of money. Gee, then miners here in Utah can get sick from their job, yet not be able to afford health care. Who’s the sicko here?

It’s Sunday. I love God. I love temples. I want to feel all warm and mushy about my spirituality. The Mormon culture of greed is unbelievable to me. The same guys who act as bishops and priesthood holders are also in government and business….doing exactly what Jesus WOULD NOT DO! This certainly isn’t exclusive to Mormons….I just expected better from them. God is true, but people often suck :-(

I started thinking I had written something similar and I found it in my abandoned posts pile. Here’s what I wrote then….

Utahns have sold their children down the road by spending much less per pupil on education than most states. From my point of view, it is a state more concerned with making and keeping money than in caring about the well-being of its children and most adults. Spending….Vermont ($19,752) per pupil, Utah ($7,223) for the 2012/13 school year. Yikes. I don’t think throwing money at education is the answer, but neither is under funding.

Lots of cronyism, mixing of church and state and trusting idiots just because they are LDS. How the heck did a society based on God and correct principles turn into a bunch of selfish and greedy people? Medicaid expansion is not happening in this state. Even though Utah taxes are paying for Medicaid expansion, the money is just being sent off to Washington, never to come back. It’s all about greed and misguided red neck ideology.

Utah prides itself on being conservative and Republican. What that means is they elect batshit crazy people that consistently vote to keep the air polluted, give unlimited money to wars and corporations, cut back the safety net, etc.

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Might as well add that to my rant. Is there anywhere that politicians represent the majority of their constituents? My mind always goes back to Vermont. It has some of the most sane people in Congress. I wish Bernie Sanders could be president :-) Why does Vermont have to have such long winters? Sigh……

bernie

 

 

When it comes to religious “leaders”, some other religions have some doozies. Like the last pope. He must have forgotten to read that Bible story. 19:16 Now someone came up to him and said, “Teacher, what good thing must I do to gain eternal life?” 17 He said to him, “Why do you ask me about what is good? There is only one who is good. But if you want to enter into life, keep the commandments.” 18 “Which ones?” he asked. Jesus replied, “Do not murder, do not commit adultery, do not steal, do not give false testimony, 19 honor your father and mother,and love your neighbor as yourself.” 20 The young man said to him, “I have wholeheartedly obeyed all these laws. What do I still lack?” 21Jesus said to him, “If you wish to be perfect, go sell your possessions and give the money to the poor, and you will have treasure in heaven. Then come, follow me.” 22 But when the young man heard this he went away sorrowful, for he was very rich.

Of all the people in the world, I would want the pope to most take that to heart. Instead, they have traditionally lived in opulence, while much of their flock around the world lives in poverty. I like Pope Francis a lot better.

Then there are the mega-churches. They seem to run more on charisma and showmanship than God’s word. In this case, it looks to me like people are paying for entertainment and the feel-good vibe. Over and over and over again, the excesses of these preachers are exposed….jets, fleets of fancy cars, mansions, over-the-top vacations, wads of spending money and all sorts of sexual perversions. Eeeewwwww…..

jesuswater

Remember Jesus? He walked around in dusty places and on water. He talked to the sickest and most sinful people around….and He helped them. He didn’t buy a speedboat to go across the Sea of Galilee. He didn’t pop out on stage, say a few words and jet off to the next event. He was on the ground, DOING things.

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Because of the way my brain is wired, I expect the world to be more into truth, justice, fairness, compassion. On one level, I still don’t understand why it isn’t. And….the more someone beats their chest and proclaims they are a Christian….the more I want to see some sort of proof.

15 Beware of false prophets, which come to you in sheep’s clothing, but inwardly they are ravening wolves. 16 Ye shall know them by their fruits. Do men gather grapes of thorns, or figs of thistles? 17 Even so every good tree bringeth forth good fruit; but a corrupt tree bringeth forth evil fruit. 18 A good tree cannot bring forth evil fruit, neither can a corrupt tree bring forth good fruit. 19 Every tree that bringeth not forth good fruit is hewn down, and cast into the fire. 20 Wherefore by their fruits ye shall know them.

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I am a very imperfect person, trying to muddle through mortal existence and can only do it thanks to the grace of God. Here is a really good talk about the difference between God’s judgments and the sort of judgments we must make for ourselves between right and wrong. Judge Not. It’s a fine line sometimes.

love

Saturday

tired

Another very exhausting night. Went to bed tired, woke up tired. Just took my last Medrol. Since the generic name for it is methylprednisolone, you can imagine it’s pretty much the same as prednisone. Here is a hilarious song about taking it.

https://youtu.be/WE1rmToYWyY

I think it rained most of the night. I heard the sprinklers come on during the downpour. Way to waste precious water! Some places in Utah are under water restrictions. I have been disgusted by the squandering of water at this property ever since I moved here. The first year, we had a puddle with algae in it right in the curb cut to leave the front door. Not only was it stupid for wasting water, it was a falling danger on the slick slime.

I want my breakfast to just appear. I am hungry, but don’t have much strength. I need one of those things the Jetsons had.

jetsons-food-machine

 

I am surprised to see the skies have cleared. Later today, the word SNOW is in the forecast. This sure is crazy weather! We had a winter with almost no snow, then once it got hot and flowers are everywhere, the snow keeps showing up. Not to worry, though, back to 80’s in a few days. I am just waiting to see what the horizon looks like in an hour to decide if it’s a FNB day.

FNB25

 

2 onion bagels, 3 white onions, greens, strawberries, 5 tomatoes, 2 peppers, 2 zucchinis, a half rotten cucumber and some spices for Indian curry. I was in the first half dozen people in line and went through twice. I wonder why less food is being picked up by FNB volunteers? These things are perfect for me, though.

It was rather nice. 50’s with a mix of sun and clouds. I needed my sunglasses. It always amuses me that I go out in a short sleeved shirt in this weather, while other folks are bundled up in down jackets, gloves and scarves.

I was in tons of pain while gone. It’s back! My head/neck/back swelling with pain has arrived on cue now that I am done with Medrol. It feels worse than ever. What the heck is causing it? The doc just said lupus, but that’s a pretty general statement. It’s cry-worthy. I also had a dozen or more major myoclonic jerks while waiting in line. Those things make every body part crunch from the sudden all over body jerk. They knock the breath right out of me. Tired of it! And today is like yesterday. I went to bed with a drooped eye and woke up with one. The left eye keeps shutting all the way….even in the nice, cool air :-(

Oh, I got yesterday’s mail today. There’s another bill from the hospital, asking for the same money my insurance company says I don’t have to pay. Sigh…..more phone calls.

I got very sleepy after my lunch of 2 artichokes. Slept more than 4 hours. Woke up to find Olive had pulled the artichoke parts from the garbage. I forgot she always does that. She never gets into any garbage but artichokes. When I woke up, all my ribs were sore from struggling to breathe in my sleep. When CPAP and oxygen aren’t enough, my MG is not doing well :-( Now that I am awake and sitting up, my neck/head/back hurts soooooooo much.

cherryJuiceMiralax

 

This endlessly fascinates me. Twice a day, when I take Miralax, I pour water in a small juice glass. Then I add about a tablespoon of cherry syrup, then I dump in a capful of Miralax. It separates into layers before I stir it. Cherry on the bottom, then Miralax, then water. It looks cool :-) The cherry syrup is awfully sweet, but it has done a good job of alleviating gout pain.

secrets-and-lies-ruin-lives

Ever read Post Secret? Why are so many people afraid to say what they think or be who they are? After my crappy childhood, I realized that secrets are evil. If things have to be kept a secret, they fester. There are secrets about abuse. Secrets about stupid things we have done. Secrets about money. Secrets about feelings. I just don’t keep secrets….don’t tell me yours if I am not allowed to talk about them. There’s a blog in my feed reader that makes no sense to me. The person sanitizes what they say so much, that there is no substance left. I don’t even know what they are talking about. Passion, people! Where’s your passion????? Don’t you get so excited you are bursting to say things? Just do it!

no-secrets

 

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