Canadians, eh?


Someone with a Canadian ISP has been seriously getting into reading my blog for a few days. The visitor count has not gone up, but the pages read from Canada sure have! More than 400 pages in the last 3 days. What’s up? At first I thought it was a fluke. Mysterious.


Last night, sleep was not easy. My darn left hip/leg hurts. The worst pain is from my lungs. They feel on fire inside. The lungs woke me up many times in the night, then it was my left hip/leg that made it hard to fall asleep again. I continue to feel strangely weak from the generic pyridostigmine. I don’t like it :-(


I took a 3 hour nap this afternoon….with the same sleep problems as at night. This evening I watched the CBS story about insurance companies denying care. It made me depressed. I feel like I am doomed to go through the exact same cycles of autoimmune issues…over and over and over and over and over….. I am very weary of the same and new problems always on my radar. I am burning up, my skin is creepy, my lymphs are swollen, I hurt all over.


Last night and this morning, I did some sorting. I am trying to weed out any object that’s useless to me….to put on the free table. I wish I had a helper! The piles of garbage, recycling and stuff to give away are bulky. Now I have to deal with the piles. For the first time in a long time, I started having fasciculations on my face, tongue and throat. It was a reminder that when I do too much physically, when I am weak, crisis is lurking nearby :-(


I think I have been trying to pretend that I am just fine. Since I am not so sure that I can “beat” the insurance company and get decent MG treatment, I want the idiots to be right that I am just crazy. I want everything wrong physically to just go POOF and be gone. Pretending it’s not real hasn’t made it go away :-( Hey! If insurance companies can have magical thinking….can’t I? There are moments when I feel like I am running out of ideas about how to cope.



Another thing I am tired of….is going through the stages of grief….for the bazillionth time.



A giant glob of thunderstorms is coming to us from Colorado. We usually get our weather from the west, but there’s a high pressure system making weather go in circles. It was getting creepy dark by 7 PM….and just keeps feeling more and more ominous. So far all the weather forecasters have been way off….predicting the rain would start last night, then this morning, then by now. At last check, they are warning it for 1:30 AM. Me and the air feel pregnant and heavy. Speaking of pregnant, I don’t think my belly was this big when Heather was in there. Last night I sprayed down my hair in the shower in order to get cool. My nightgown stuck to me. Scary! :-o No wonder my hernia hurts so much :-(



But….there is something positive to say! I have been using a new hand cream on my belly wound. it bleeds every day from the skin cracking. Since I have been using this….no bleeding! :-) I want this to heal. It’s getting there…..sort of…..


Ragweed, Sagebrush/Sage and Grass


Allergenic Pollen (poplar, alder, timothy grass, ragweed, sagebrush, scotchbroom) from Dennis Kunkel. Cool looking, huh?

Must be I am more allergic to them than the other pollens. Ragweed, Sagebrush/Sage and Grass are the highest pollens today. My nose is like a dripping faucet. As the seasons change, the types of pollens change. I am most allergic to what they call “cedar” in AZ and TX, but it’s really juniper.  Then there’s jojoba in CA. I found a few websites that said “An average-size jojoba bush produces 1 kilogram (2.2 lb) of pollen, to which few humans are allergic.” Figures. When the weather is damp, the molds get me. I wonder how my body decided which things to be more allergic to? When pine pollen is in all the mud puddles, I am often allergic. I don’t know if it’s from that, or something else that’s going on at the same time. My mother and I both tested allergic to pine. Literature says few people have pine allergies, either. Geeze!


Yesterday I kept feeling my cheekbones. Today when I do that, they hurt. My mother was allergic to “everything”. My father thought that was a bunch of BS and persecuted her for it. I wish I had known better as a kid. Now I know it’s all too real.


Nasal allergies are estimated to affect approximately 50 million people in the United States, and its prevalence is increasing affecting as many as 30 percent of adults and up to 40 percent of children. What??? 70% of you aren’t affected? I know everybody doesn’t have a bunch of autoimmune diseases like me, but I thought just about everybody had allergies. Silly me!


Hmmmm…totally different disease organization and their page says Approximately 50 million Americans, 20 percent of the population or one in five people, suffer from autoimmune diseases. Women are more likely than men to be affected; some estimates say that 75 percent of those affected–some 30 million people–are women. Still, with these statistics, autoimmunity is rarely discussed as a women’s health issue. Interesting that they both use the 50 million number…with different percentages.


My father had Crohn’s disease, his brother lupus, his mother rheumatoid arthritis….all autoimmune diseases. My paternal grandfather and uncle also had polio…a virus. My mother had mystery problems besides allergies. She often had the same symptoms as me. I don’t think any docs ever figured her out. She was often blamed for making things up. Her sister had psoriasis and she died of multiple myeloma. My aunt also either had Crohn’s, or diverticulitis or something like it….I wasn’t very medically savvy back then. My maternal grandmother needed oxygen back when oxygen concentrators took up a huge part of the room. She had strange weakness and droopy eyes. I often wonder if she had undiagnosed MG. With relatives like that, it’s no wonder I turned out like this. I had mono and WNV, plus show CMV antibodies…all from viruses. I believe my penchant for getting virsus infections when those around me don’t, is an important clue. I hope a heck of a lot better diagnostic tools will be available in the future. Gene testing wouild be wonderful.


The National Institutes of Health says There are more than 80 identified autoimmune diseases. Multiple factors are thought to contribute to the development of immune response to self, including genetics, age and environment. In particular, viruses, bacteria and other infectious pathogens are the major postulated environmental triggers of autoimmunity.


In my own life, one of the creepiest medical consequences is that doctors generally treat women very differently than men. Add to that a patient’s socioeconomic status, and sometimes the level of care that I get really sucks. There is no such thing as a truly neutral, non-biased person. I am not one.


(Except God)

I need to apologize to the person who sent me the 2 boxes of food. She is an Amazon vendor and sent me things that needed to be moved out of warehouses. I am admittedly paranoid. After the health system trying to kill me off, I wasn’t willing to trust random mystery food. It very much scared me when Amazon said the packages did not come from them, but had Amazon stickers on the boxes. I will give the food to someone who can use it. A lesson for all concerned.


Ummmmmm, crap! I went looking for a picture like what I see. It was on a page about macular degeneration. My uncle has that. Then there was this grid to stare at. If I stared with just my right eye, the grid started out OK and then got totally black. When I stared with my left eye, there were the scattered gray, blurry spots. My left eye is the one that hurt awhile back.

The darn generic Mestinon is definitely not working like the brand name stuff. My double vision makes typing and reading a challenge! There are multiple gray, fuzzy spots in my vision. My neuro’s nurse never emailed me back to give me an appoinntmet. I hope my voice works on Monday so I can just call. I sure am weak all over :-( It’s never easy to get up from my chair, but now it’s scary, too.


I uploaded some pics of Olive, and found a pic of last night’s supper. I don’t like tomato sauce. I often use basil pesto as the base for pizza. This time it’s roasted red pepper and eggplant. Topped with diced chicken, Parmesan and shredded pizza cheese. The base is pita bread.


It was a pretty good dinner :-) Here are the pics of Olive. I got one of her being cute and one of her being mad that I was taking pics :-p

Not sure if I trust these new meds!


Back in the mid 2000’s, generic pyridostigmine came on the market. A bunch of us called in to our neuro, who mostly had MG patients. He figured out the sudden flood of people not doing well was related to generic versus brand-name. He gave us the Mestinon brand name, and we all got stronger again.

For awhile he had to keep filling out paperwork so that my insurance would be willing to pay for brand name. At some point, I got tired of the game and switched to Mestinon Timespan. There was no generic substitute. But beginning the last week of June, a generic extended release pyridostigmine was on the market. I got my prescription yesterday. I took my first generic pill last night. I woke up feeling like I had been run over by a stampeding herd of buffalo. And so far, after 3 more doses, I don’t feel any better. I am way dizzier than usual….even for me. The question is……was this going to be a particularly weak and droopy day, anyway? Or are the generics not working as well as the brand name meds? That’s a tough one to figure out with me. Sigh…..

And today I got some mystery boxes in the mail, with mystery food in it. I am most probably going to offend whoever sent them, but please…..don’t anybody send me random stuff unless it’s something I have specifically said I need or want. I feel like such a bitch saying that :-( But that’s the truth. It makes me heartsick to see money wasted.

The boxes have Amazon written all over them, but Amazon claims they did NOT come from them. The return address is an Amazon center. I contacted Amazon about returning the food and they say food cannot be sent back. Under these circumstances, I don’t know where that food has been or what’s in it. I am not comfortable consuming it. I feel bad that someone went to the expense to buy and send it! I am very, very grateful to the person(s) who sent me presents. You must care a lot about me. Thank you :-)

I spent an hour Googling how to act gracious, how to be grateful, how to act when you are given something. There was a step-by-step page of how to act surprised and say oooohhhh and wow….even if you don’t want the gift.  How to React to a Gift You Do Not Like  In oh, so many ways I feel like I am back to childhood. I will never forget when a pseudo relative gave me a set of make-up and jewelry cases….when I despise makeup and jewelry. Part of me was touched that she cared enough to give a gift. The rest of me was mystified. Did she even know who I was?

How come it seems like everybody in the world knows how to act but me? Lying seems more painful than pretending. I have always had to research how to act and what to do in social situations. It seems to come easily to the average person. How do you do it?

While I was worrying about offending the kind, mystery giver, this popped up from Heather’s friend. Love it! Warning! The music is addicting and gets stuck in your head. I was worried about the black llama at the end, so I watched another, slower version and saw it get roped. Whew! They sure are good at dodging and weaving. I need to take lessons!

Almost all I remember from today is being woozy from the new version of my meds. I tracked down a couple of people who also don’t like the new generic….but there was one woman who said she got used to it. I guess time will tell!

I have been sitting here in the dark, enjoying my little “campfires” :-)


It’s gone…..


The rush of adrenaline from getting ready for this trial, being in court, talking with my broken voice and listening to false testimony has now evaporated. Yesterday’s righteous indignation is replaced by depression today. The left side of my head has been having some wicked bad shooting pains. I think it’s from my vision being messed up, combined with all the stress. It’s only now that I realize how much stress I was under.


I wrote to my lawyer and asked how she thought it went. She gave a noncommittal answer of both good and bad points. I feel blah. I also thought it could go either way. The deck is stacked against me, though….all that power and money versus a small speck in the universe (me).


My guts still haven’t recovered. But….it surprised the heck out of me when my voice worked this afternoon! I guess I finally got enough sleep to replenish some of my strength.


I am pretty much devoid of ambition. I am in suspended animation. Which way will my life turn next?


Last night I fell asleep OK, but I kept waking up, thinking about the mocking tone of the idiot neurologist who was testifying by phone…..and the idiotic statements made by the guy nurse about IVIg.

I got up early because I was so queasy and my mind would not shut up. Yesterday I ate a small breakfast of eggs and veggies, and that was it for the day. I did not need insulin last night. It took me a few hours to be able to swallow my morning meds. Lately I have been having a heck of a time swallowing. Things go down and all the gel capsules pop right out again. It’s not easy to swallow water, either.

I got dressed and went out to talk to the manager this morning…about the creepy guy being back. He was angry. Said it would be resolved soon. Out of curiosity, I asked why the closet doors have been sitting outside my neighbor’s apartment for a couple of weeks. Much to my surprise, the maintenance man up and quit or was fired one day! I liked him. I would love to hear the story behind it all. My voice is broken, still :-(

I spent the next few hours in agony. The bathroom was my destination more than a dozen times. By then I was too weak to sit up. My vision went more nuts than usual. I kept wiping off my glasses, but there was nothing on them. I realized it was my eyes. There was one major spot of blury greyness sort of in the middle of my vision. I slept like a log for 6 hours. Olive woke me up because I was breathing funny. She said it was time for Mestinon.

I just keep hearing the opposition in my trial. I hope the judge can figure out all their lies. The bad neuro claimed he had been following me for 6 years. I have lived here for 3 years. I only went to one appointment with him, but he did 2 tests on me. Remember how I said he did not test my eyes during the SFEMG? He claims that it was not important if I have ocular MG! He had to say that because my own neurologist had circled the page where that same man had said I have OMG (ocular MG).

These people wanted it every way. They claimed I did not have MG….that I have Munchausen’s or conversion disorder or some other mental illness. Yet, he said I do have OMG! The idiot neuro who is not my doctor and wasn’t there, told the judge I got better “in minutes” from IVIg, proving I am crazy. Then he told the judge that I was very symptomatic when he saw me and I was taking Mestinon. He’s the one who told me not to stop it for the test. He even admitted in court that it needs to be stopped :-p His lies were endless. He even mocked my doctor….who trained at his hospital. He talked about him in front of the judge, using a nickname, not calling him doctor. When my lawyer pointed out that the good neuro believes I have generalized MG and I need IVIg, he told the judge he needed to give my neuro “a talking to”.

The opposition’s “expert” witness was a guy nurse who used to give infusions, oversaw infusions and now is on the pharmacy board that denied my IVIg. He went on and on about how scary IVIg is….dangerous to give, dangerous to get. He said he would never want one. He also told the judge that it was one of the most addictive substances on earth. He was supposedly quoting some doctor. They were trying to label me as a drug seeker. IVIg is a human blood product. Maybe they think I am a vampire??? Come to think about it….I have been “addicted” to blood transfusions in the past. It must be my “addicted to life” problem.

When the nurse was asked if he knew what Mestinon is, he said yes. My lawyer asked him what conditions it treated. He fumbled around and said lots. The lawyer then told him it was used primarily for MG and nerve gas exposure. She then got him to agree that was correct :-) Then she asked why insurance was willing to pay for my Mestinon if I don’t have MG? He snorted and said because it’s cheap. I guess he didn’t know that a month’s worth is going for $3000 to $4000 :-p

I loved the part where the lawyer made the nurse open up his own tabbed binder and read to the court from my neuro’s assessment of me before and after IVIg, my diagnosis and that I need regular IVIg. It greatly pained the guy. It was great :-)

The opposition’s nurse and neuro tried to discredit the 5 principle neuros and every other sort of doc who have diagnosed me time after time with MG and who gave me treatments for it. Apparently every neuro before and after their own guy was a no-good, dumb and gullible doctor. I am not rich, I am not important, I am not good lookin’ and I am not particularly persuasive….yet somehow I have conned all those doctors, hospitals and insurance companies for years just to feed my IVIg “habit” :-p Damn…I am good! :-)

I was able to tell the judge that this has happened to many other women with MG in Utah. Almost the exact same tactics and words. They were undiagnosed with MG and told they had conversion disorder. I also told the judge how this hospital system makes sure to tell any other hospitals or doctors that I go to, that I do not have MG and am crazy. It was fun to watch the opposition lawyer when he found that out. It came out that the idiot neuro had told the hospital folks where I was in crisis, that I had conversion disorder, not MG. Hopefully the judge understands just how much they have over reached and stuck their tentacles into everything. I certainly hope she looks up IVIg. No one considers immunoglobulin from human plasma to be addictive. Of course it sure does make MG better!

I could go on for hours with all the stupid things said at my trial. I am glad the judge asked if I had thought about changing insurance companies :-) I told her I wanted to, but I knew my current insurance company and their affiliated neuro would just keep telling all my present and future medical practioners that I am crazy and don’t have MG. I wanted a ruling so this would never happen to me again.

It must be tough to be a judge. I spoke to her with passion, from my heart. I went over my past medical history with her. Then I had to be quiet as each person who testified against me butchered the truth and traded in hype, exaggeration and circular speak. How does she know who is telling the truth? There was a 5″ thick looseleaf binder with tabs, given to her by the opposition. It was mind-blowing to realize how much money went in to defeating me. Dozens of people were involved! There were many at my trial….all against me. My own neuro did a good job of giving them his opinion of my condition and that I need IVIg. Now it’s all up to the judge.

I am glad it’s over! Only it’s not really over :-( And yes, I am terrified of going into crisis and having IVIg withheld.

Long day

I was already feeling yucky thanks to the on again, off again fever. Then I had to take public transportation to and from a court hearing. I talked a very long time. My voice was broken the whole time. It was hard to both talk and breathe. Tonight my chest hurts a heck of a lot. The trial was about 3 1/2 hours long. Way too long to sit still. By the end, I was having myoclonic jerks. So embarrassing :-(

I thought most of the testimony against me getting IVIg was BS. Lots of amusing and not so amusing twists and turns. I can’t wait to get the transcript!!! The experts were not very expert.

In a fair and just world, the outcome would be in my favor. I guess it depends on interpretation of medical laws and practices and how much weight each person’s testimonies are given by the judge.

The verdict will be in 2 to 3 weeks. The judge can be overruled by someone higher up. If I get a denial, it can be appealed.

Basically I wish I did not live in Utah. The opposition’s arguments boil down to them thinking every doc and neuro but theirs is wrong. Can I trust people like this ever again? No.

Olive went nuts with excitement when I got home. She is not used to me leaving that long. I appreciate being loved and cared about :-)

The creepy guy who sleeps in the van is back. One of the resident druggies chased him across the parking lot, but he was on a bike, so he escaped. Lots of scary yelling and swearing :-o

Between court and creepers, I am very hyper, yet very tired at the same time. I am not sure when sleep will win the battle.

I need a hug.

Feeling scared…..again


Something is not right with me tonight. I am very dizzy, weak and shaky. My eyes have barely been working. It was tough to do the blog post and even tougher the second time around.


The harder I tried to think, the scareder I got. I notice every single day how bad my memory is. On Thursday, when the lawyers were asking about my medical timeline, I kept forgetting things I knew a few weeks ago.


My attention span is very short. One second I will think of something I want to ask or stuff to look up. Then it’s promptly gone and I have no clue. I notice daily now that what’s in the fridge is almost always a surprise to me. I just didn’t remember buying the food or saving the leftovers. I wasn’t this dull-witted a couple of weeks ago :-o It’s an unpleasant sensation to feel weird all over and disconnected. Where did my mind go? Why can I remember stupid stuff and not the important things? Why am I burning up? Why do I have chills? Why am I so achy? Why does my brain hurt? What’s happening?


No wonder I am burning up. After drinking cold water and taking Motrin, I am still 101.0 degrees. I had to dig around for the thermometer. The basket I keep it in hasn’t been the same since I stuffed it in my room while the grandsons were here. One more thing I should neaten up. And holy smokes! My blood sugar is 278 :-o I must have an infection to make the fever, blood sugar and severe weakness going on all together. My belly hurts bad :-(


I tried to go to sleep. On my way to bed, Olive was in the suitcase :-) Olive is ready to roll!



I did the whole tossing and turning thing. I was too dizzy to sleep. Too sore to stay still. An hour after having bad chills, I am back to burning up. And ohhhhhhhh………my head!


I finally got back to sleep after 2 AM. Then I had soaking night sweats and woke up dripping wet. Took a shower that wore me out. I wasn’t fully present for the experience. I spent the morning sitting still, just trying to breathe and sit upright.


Around noon I eventually got hungry. Made a breakfast of onion, mushrooms, tomato, avocado and eggs with Sriracha sauce on the side. At noon I realized I STILL forgot to take my probiotics and shoot up insulin. At least my blood sugar is “only” 147. I have gotten up for insulin at least 3 times now :-o And….I cooked in a total dreamlike fog. I could not really see what I was doing. I could feel the food, but could not rely on my eyes. Soooooooooooo dizzy! Many times I felt like I was going to faint.


OK….since I wrote it down….I figured I would remember after using the bathroom. I rinsed and put dishes in the dishwasher, I wiped things down and I stood there, leaning against the counter, feeling bewildered. I kept staring at the small glass cup by the sink. Duh….mixed up the tart cherry concentrate with water, added Miralax. Chugged it down with a probiotic. Dropped the needle multiple times, filled the syringe with insulin, missed bare skin and shoved the needle through the elastic in my under garments. Sigh…’s done. The whole time, my legs were buckling.


It’s another day of buzzing, jittering, serial muscle cramps, quivering, drooping and weakness. I am back to burning up. My arms are like flubbery rubber. The #%$&!! myoclonic jerks are being jerky. My jawline is sore and swollen. It hurts to swallow. My ears ache. My head is pounding. I cannot make sense of my symptoms. As usual, it’s a mish-mash of autoimmune and neurological. Somehow it feels like if I could understand it, I could endure it better.


Trying soooooooo hard to hold on and endure!!!!



I put a cushy blanket in the suitcase for Olive. She appreciates it :-)

Interesting comments


I wrote to one of my WNV groups and described how I felt with all the people, noise and movement from the parade. I got 16 responses saying that WNV left them feelig the same way. And then a couple of people said a curious thing. They feel like WNV is a lot like being autistic. Yup! The mild end of the spectrum….but very much the same. I have talked about Asperger’s a few times. Every sensory issue I had as a kid…and then some…has come back after WNV. I wonder how many times I have used the word “overwhelmed” since the stupid mosquito bit me? We all have a strange sort of anxiety we never felt before.


In my MG support groups, the subject of pain often comes up. It used to be widely believed….by doctors….that people with MG don’t feel pain. That always irks me. Finally the American Association of Electrodiagnostic Medicine surveyed actual MG patients and 50% said they had pain due to MG. Well, duh! When I struggle to breathe, my ribs hurt. When I am too weak to hold up my head, my neck hurts. When my eyes droop and I have double vision, I get very nauseous, my eyes hurt and I get a headache. When my arms and legs feel like someone attached lead weights, it hurts to lift up my hands and feet. If the muscles aren’t working right…they are weak….the weakness causes pain. BIG DUH!!!!!! So tired of idiot neuros who tell people they don’t have MG because they have pain! Hardly a week goes by that some woman is undiagnosed because of that. Grrrrrrrrrr…….of course, it’s always women :-(


And….one of the TV stations asked the question….what happens to all those parade floats? Some people said a part of them are recycled. One guy was very proud to say it was only meant to be used once and was going to the dump. When people have enough food, shelter, etc, they usually have no clue what the lives of the less fortunate are like. Makes me sick that all those hours and all that money…..most often raised by church wards or stakes, goes to stuff like this. I bet most kids would rather see real pioneer wagons, lots of horses and the simpler, older things. At least for me, I am tired of being glitzed out. Authentic things are more interesting. What if all those parts of the LDS church put that much money and effort into good food for the poor, dental care, medical care and other true and desperate needs in the community?


An article in the SL Trib says “For those who make floats, the parade is the culmination of more than eight months of work, Smith said. Stakes in The Church of Jesus Christ of Latter-day Saints are given a parade theme in October. This year, it was “Forging a New Frontier.” Then they draw up a plan and assemble a building and decorating team. In January, once they receive a float base, they spend the next four to six months completing it.” Geeze, reading that made me even more heart-sick :-(


I am glad it’s not just me who sees the whole thing as nuts. I like this story. Pioneer Day should reflect all of Utah’s people


Yes! What a waste of time! (And BS!) How about a real service project that actually HELPS others??? People will feel much more fulfilled when they do something useful. Deseret News story…Creating Days of ’47 parade float is ‘more about building people’


I am deeply disappointed in humans. There are real gems out there, though. Some people do good and help others. Imagine a world where we spent much of our life caring about others! I see so many people hurting financially, socially, physically and mentally.


The other day I was coming home from the grocery store. For the bazillionth time, I almost got hit at an intersection by a driver bent over their smart phone. I had started to cry behind my sunglasses. Some random man….probably homeless…..smiled with the biggest grin, said hi and complimented me on something or other. His smile made the whole world better at that moment :-) It doesn’t take money to make another person’s day. It just takes caring. If you have the means to help out temporally, so much the better.



At least Pie ’n’ Beer Day is honest about what it’s all about.



Olive does not approve of pie and beer. She would like some sour cream, though.


Are you going to share?




Mom made potato pancakes into potato waffles. One potato, part of an onion….put through the food processor. Add an egg, salt and pepper. Cook in waffle iron. Serve with sour cream and applesauce.



Seriously! Are you ignoring me!



I am cute and adorable! You cannot resist me!



Fine! I know there are cat treats in the suitcase.






While you are blogging, I think I will check this out.



Aha! I see a bag of cat treats!



If I look cute, can I have a treat?



I am not taking my eyes off the treats. I am trying to act cool and relaxed.



My patience is wearing thin.




Mom is reading this book to decide what to put in the suitcase. I know what to take out!



Olive is enjoying the crowds



There’s a big RV between us and the building next door. It’s full of screaming children :-o The big pine trees shelter tents and sleeping bags spread on the ground as far as you can see. Both sides of my street, at every available spot, are covered with people. Tents, tarps, unbrellas or just out in the open. It was an all night party. I shut the window, closed the blinds, turned on the A/C, turned on the CPAP and oxygen concentrator, and blocked most of the noise out. Sometime, in the middle of the night, someone lit off fireworks right under my bedroom window. I woke up for maybe 10 seconds and fell back asleep.


Vendors have been going up and down the street since yesterday. One popluar item is a black plastic long horn. Lots of horn blowing and screaming out there. I am glad this is only once a year. It seems like everybody smokes. The cigarette smoke comes in whether the window is open or closed. I wish I was more excited. Apparently I am just plain old and grouchy.


I slid my comfy chair across the room and parked my wheelchair in its place. Now I can watch some of the parade going by. I have the parade on TV. It’s actually more interesting on TV because they explain everything. I am trying not to get too hyper about the toddlers being allowed to sit on the second story parking garage railing….or the ones being dangled over the edge.


I wonder what the historical origin of gun flinging is? In front of the band marching by, there were lots of people twirling and flinging fake white guns. I like the float with bubble machines better :-) And…what’s up with float after float of “beauty queens”. It’s no wonder Utah has such a high use of anti-depressants, body shaping plastic surgery and suicide. Most normal bodies don’t look like that….or look like that for long.


I think I am fun-impared when it comes to crowds. People irritate me, noise bugs me, smells make me sick. Sooooo many horns and sirens! People are loud and obnoxious. My head hurts. I am absolutely worse than ever after West Nile Virus. My brain does not like all the confusion. Sensory overload!!!!!!

Oh, first a convoy of assorted armed services vehicles, and then a tank. Lots of showing of force out there. Several different groups of motorcycle cops doing tricks with lights and sirens blaring, military vehicles, fire department trucks, and float after float and car after car full of “important” people. Most of the “important” people are men and almost all their waving wives by their sides, are of the same cookie cutter size and shape. This all goes by, shocking and awing the peons on the side of the road, who are happy to waste their lives smoking and drinking, while whooping and hollering. Yup….not understanding this from my point of view.


cart whale bubbles




For more parade pics, go check out Deseret News there are a few floats that are actually Mormon pioneer oriented!

I liked seeing pioneer carts, horses, Henry B Eyring, bubbles, the whale, marching bands and anything with little kids or old people. The rest? It makes little sense and gives me a headache. And I like colorful flag twirling better than the fake guns. Most of the parade made me wonder what it had to do with pioneers. It boggles the mind how much time and money went into the floats. How ironic that usually the space under the pine trees and around the bushes sprouts homeless people, instead of parade goers. A lot of expensive gaudiness when there are people in need all around us.


Ostentatious displays of wealth and power are way more important than dealing with reality. Feed them bread and give them circuses!

The Etruscans of northern Italy originally held public games, (ludi), which featured such events as gladiator battles and chariot races, as a sacrifice to the gods.

The Romans continued the practice, holding games roughly 10 to 12 times in an average year. Paid for by the emperor, the games were used to keep the poor and unemployed entertained and occupied. The emperor hoped to distract the poor from their poverty in the hopes that they would not revolt.

Over time, the games became more spectacular and elaborate as emperors felt compelled to outdo the previous year’s competitons. The games involved more participants, occurred more frequently, and became more expensive and more outlandish.     from:


After the pioneer parade, head on over to the Jazz Energy stadium for ribs bbq and a rodeo…..or for the folks not rich enough to go in….ride the mini mechanical bulls out front….or if you are too poor for that… it all and drool.bernieIt was fun watching just how fast clean-up crews came through….picking up trash, leaf blowing dirt and crud, picking up and taking away the outhouses, traffic barriers, cones and signs. Within an hour, things were looking better :-) What a relief to have everyone pack up and go home! That made me want to go out. I am losing the hydration war again. I started thinking about and craving chocolate milk. What’s weird is how cheap milk is here in the desert. It’s less than half the price of Vermont milk. I often see it on sale at 2 gallons for $3 or $4.

So… order to look at my world without the crowds and to get milk, I went to Smith’s. Today, milk was $2/gallon. I already made my own chocolate syrup last month. I took TRAX to get to Smith’s, then came home by power chair. One couple that I know, were by the mailboxes when I came through the door. The first thing they said was I looked awful….had I been out in the sun?


I went around the corner and took a pic in the hallway. Yup. I look like heck. Then I came in my super-cooled apartment, put away the milk, took off the hot clothes and put on my nightgown. I figured I would look better. Nope. I look like heck. I have the MG droop for eyes and mouth. Looks like my face is melting. I actually thought I was smiling! :-) Sigh…..I need a nap! What I REALLY need is an IVIg!!!!!



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