Deal with the devil

I woke up more swollen than I have ever been. The corner of my bed where my left leg was sleeping was soaked. My leg isn’t just leaking…it’s spouting clear fluid. I soon realized the edema was also affecting my eyes. My eyeballs felt like they were going to pop and my vision was blurry. I kept hoping things would get better, but instead, more of me got even more swollen. I retrieved my bottle of Bumex.

Sigh….it did not take long until my tongue was on fire….but at least I finally started peeing. Before I swelled up, I was losing consciousness many times a day. Once I swelled up, I was able to only feel dizzy, woozy and weak…without also losing consciousness. I do not like either choice! Now all the peeing is making me extra woozy. My body is trying to decide what to do next. I feel horribly yucky 😦

Well…on second thought, I feel great compared to the dead guy upstairs 😦 I have made a zillion trips to the bathroom and back. One trip back, I saw the cop car in front of my window. And just as I was about to get up again, a fire truck went by. After a while I got dressed and went out to see what was going on this time. The rabid “Christian” ran up to me to tell me some guy name Dean had died….and that if he had not accepted Christ….she knows where he went 😮 Dang, that woman is something else 😦 She’s the one who is always telling me that she and I do not worship the same Jesus or God….and I tell her I’m glad 🙂 What a whacko.

Anyway, after talking to a few people, I think I have a story close enough to the truth. Turns out I had talked to the guy at least a couple of times. He had a full-sized white van and we talked about van living. I told him if that was my van, I’d be out of here in a flash. He seemed a bit confused, subdued and depressed. At least I was confused by him.

Today I found out he recently had hernia surgery. People thought he had been out of the hospital a week or two. Bev, my old laundry lady, went in to check on him and found him dead. Apparently he had been dead for some time as the place was stinky. Yuck. There are 3 cop cars and the crime scene unit cop here. The dead guy had openly said things like he wished he was dead. There are rumors of pills being taken. What a bummer 😦

One of the office women hurried over to me and said several people had asked if I was the dead body. Nope….I just keep being sick and out-living everybody. It’s amazing I am still alive and kicking! I was thoroughly soaked in sweat from getting dressed, so I sat outdoors a while. Then I made 2 trips back to my apartment to pee in between talking to folks in the foyer. Finally I gave up and came home. I have to go every 10 minutes or so.

It makes me sad that the guy had no one looking in on him or taking care of him after surgery. Sounds like he was a loner.

In MG news….a bunch of people are suddenly discovering that their Medicare Part D plan is not paying for Mestinon 😮  Mestinon, also known as pyridostigmine, is the only FDA approved treatment for myasthenia gravis. The manufacturer has jacked the price up by several hundred percent. My Utah Medicaid plan first tried to deny me IVIg by saying it was not FDA approved for MG. Since myasthenia gravis is a rare disease, it gets little government funding. The FDA is unlikely to do much for us.

Sooooo….while talking about all the politics involved with the ACA, FDA, Medicare, pharmaceutical companies, etc, a woman said “OK pardon my stupidity but who is Paul Ryan and why do I want to contact him? Please educate me”. It freaks me out how clueless and uneducated people are 😮 How do they make up their mind about important stuff if they do not understand the basics of our government? I hear or read Paul Ryan’s name many times a day…..and unfortunately know what a #$%&*! he is when it comes to poor and disabled people.

This chilling book is gaining new favor. Eerily correct for these times 😦

I’m not liking presidential….or pretty much any politics lately. I spend way too much time trying to keep up with the facts about what is going on. Most of it makes me nauseous and heartsick 😦 In turn, that gets me mad….especially mad at the people who don’t take voting seriously…..and the crooks who take advantage of that.

Food was only marginally significant today. I had muesli with yogurt and maple syrup for breakfast, a salad for lunch and a cup of mango kefir for supper. My mouth hurts.

Today feels all-around unsettling.

My increased risk of mortality

All things considered, it’s truly amazing that I am still in this plane of existence! Someone from my West Nile virus group posted this article. “In the largest study to investigate the long-term effects of West Nile virus, researchers found that patients aged younger than 60 years who appeared to have recovered from the virus were 11 times more likely to die several years after infection compared with the general population.” Add in my chance of early death from each of my health challenges and it’s truly remarkable that I am still here. I want people to remember that. I’m less than thrilled when I am accused of being a quitter who just gave up. I have been through sooooooooooo much! And I have fought my way to still be here today.

Last night, I was asleep by 9. I woke up at 1 AM and felt better than I had in a long time. But….after a trip to the bathroom and back to bed, the coughing commenced. I have been sitting here for hours coughing crud out of my lungs. I have totally filled my big kitchen garbage container in 24 hours from just used kleenexes. Do you have any idea how much energy and pain that represents? Ugh. I am feeling worn to a nub. Here’s hoping that each day’s dose of antibiotics helps me feel better!

Gee…I just found myself quoted in a Salt Lake Trib news story. It’s something blog readers have heard before. It’s also been on my mind a lot this winter. SNOW. Especially the snow keeping me from following sidewalks to the grocery store or TRAX. I lucked out yesterday when going to the health clinic. Lately the Dept of Workforce Services has been doing a better….but not great job of clearing their walks and curb cuts. The other side of the street was not cleared.

Along the 800 side of pawn shop on State Street

Stupid barbershop and title loan place shovels from sidewalks to their business, but not the public sidewalks 😦

This crippled up old guy struggled mightily on the barbershop/title loan stretch. I slid all over in my chair.

Curb cut across 200 on 800

Curb cut along 200, across 800.

No man’s land between Lowell Apartments and Workforce Services. This happens EVERYWHERE around the city….no one takes responsibility even though both places should clear snow to the access road….and across it.

TV news says there were about 400 accidents between Friday and Monday, plus 3 state trooper cars were hit. Today we are under a Winter Storm Warning. It totally sucks to be this sick, have a rainy/snowy day, while needing to negotiate messy sidewalks and uncleared curb cuts…..to get to the hospital. The more I think about it, the more depressed I get! These pics are from yesterday. The pics underneath here are from the apartment parking lot. At least the middle is clear. When Heather was here, it was sometimes a mess. Very shameful that a better job is not done to clear the lot. People break bones and get concussions out there each year.

When I lived in the Adirondacks in a senior apartment, they were way more safety conscious and kept the parking lot clean. Ahhhhh….Utah….home of Republicans where they are more into rugged individualism rather than care and safety. What a cop-out. It just means the landlord saves money while Medicaid and Medicare pay thousands to repair all the broken people.

I only got to sleep 2 more hours this morning. Once the coughing calmed down, I quickly fell asleep. I woke up to Olive on top of me, with a horrible shrill, wheezy choking. It was a mighty struggle to open my eyes. I immediately dozed off again. Her choking got worse. I woke up and found the cat first aid book. Not very helpful.

I fussed about Olive for a while and got her to come to me. I just kept petting her. Thank goodness her breathing got better and the choking tapered off. She fell asleep on the pillow beside me. I decided to take my blood sugar. It was 65 😮 I ate some emergency chocolate 🙂 What if Olive had not woken me up?

Eventually I made myself pita sandwiches for breakfast. A pita cut in half, bacon jam, lime mayo, diced tomatoes, diced avocado and a slice of roast beef in each half. I can taste better! Must be thanks to the antibiotics?

I always forget to take pics of my salads. For lunch, I nuked 8 chicken teriyaki meatballs…then cut them in quarters. I added grape tomatoes, an avocado, red and green butter lettuce, cruciferous crunch, my free Friday download ranch dressing, chow mein noodles and tossed it up. I could taste that better than usual, too 🙂

Around noon I coughed so hard that I could not move for a while. Then there was a loud rumbling noise and my whole apartment kept shaking. I was trying to crane my neck up enough to see if it was a snowplow or what? Olive was going nuts, running back and forth to the window. That’s when I looked up. It was military helicopters going around and around SLC. I went to Twitter and discovered they were here for the governor’s inauguration. Politicians just love fanfare 😛 It shows their true colors….it’s all about self-aggrandizement, not service.

I was not exactly in a great mood. I have been miserable sick 😦 I was almost ecstatic when I got an email from the clinic that I could come over and get a bottle of codeine cough syrup. Since chugging some, I more easily coughed out the yellow gunk and feel way more relaxed and comfortable. Any improvement is fantastic! 🙂 I desperately hope to sleep tonight.

Yikes! 5 blocks from me a man in a wheelchair was tossed in the snow and robbed. Sometimes I see creepy people eyeing me and know they are thinking about doing that to me.

I stumbled upon 6 Unique Ways to Use Your Waffle Iron. A few of the recipes look tasty 🙂 And speaking of tasty….I was brave and strong! I was able to bend long enough to find more leftovers in my fridge. I am going to guess that it’s some sort of pulled pork and there was a blob of guacamole with it. I stirred in what was leftover from yesterday’s spicy guacamole, added the last of the sour cream and some yummy salsa and ate it with tortilla chips. It’s always fun after Heather leaves….to discover what sorts of interesting leftovers that are lurking in the fridge. Mmmmmmm……

And….usually my legs are up on the ottoman. When they get numb, I put them down for a while. Sometimes there are little “lakes” from my dripping leg. Of course I never take a pic of the impressive ones. Here’s a little puddle after about 20 minutes.

Sounds good! I am going to get rid of my stress by having some dessert 🙂

Here comes winter!

Sitting here this morning, I watched the clouds move in and settle low. Because it’s not snowing in the valley…yet…I can see the nearby foothills. They are getting whiter by the minute. I like snow from afar 🙂

Last night was strange. I fell asleep around 10 PM, but had a hard time falling asleep and staying that way. I continued to feel awful from the night and day before. Each time I woke up, I would look at the clock and be bummed that I hadn’t slept all that long. I was glad when one of the times I woke up and it was 7 AM. Too bad I feel like I never slept at all. Is that why they say “no rest for the weary”? I was too tired to sleep well. Then there was the constant noise from upstairs 😦 She repeatedly woke me up. This is feeling like when The Stomper lived above me. The last 2 years were blissful in comparison….very little noise and no smoking. Ahhhhhh…..  The upstairs woman needs a nickname. She has made more noise so far than the guy up there did in 2 plus years.

The missionaries came to see me before church. I cried the whole time. I guess I am officially a basket case. It’s all just too much. I am losing it.

As far as “losing it” in this political climate, I thought Ken’s blog post was a good one.

I know I should be brave and upbeat….instead I am tired and sad 😦 I need to quit crying. My eyeballs dry out and it gives me a monster headache. I have never been so dizzy or had such double vision as tonight. I started thinking….if I really need/want to, I think I can use that $5 cellphone to call 911 even though it isn’t activated. Is that right?

I heard ice hitting the window and went to check local weather online. I must have been a zombie all day. I don’t remember hearing about Winter Storm Blanche. I see it’s going to go all across the country. Have fun, peeps. Geeze…I’m glad I don’t need to go anywhere.

Winter Storm Warning in effect from 2 AM to 11 PM MST Monday.

The National Weather Service in Salt Lake City has issued a Winter Storm Warning for heavy snow, which is in effect from 2 AM to 11 PM MST Monday. 

• Affected area: The Wasatch Front along with the Cache and Wasatch mountain valleys.
• Snow accumulations: 3 to 6 inches along the valley floors of the Wasatch Front as well as the Heber and Park City areas. 6 to 12 inches along the benches of the Wasatch Front as well as the Ogden Valley.
• Timing: periods of moderate to heavy snow will develop early Monday morning and continue into Monday evening before tapering to showers late Monday.
• Impacts: winter driving conditions can be expected across all area roadways Monday. Both the morning and evening commutes will be significantly impacted.

Keep breathing…

I was so sick last night that I fell asleep sitting up. I went to bed early. Woke up this morning to hear voting results. I did not want Hillary Clinton to win…but I sure as heck did not want Trump as president 😦

I fell for a man once….he told me flattering things…..and that’s all I heard. I ignored his substance. I just wanted to feel good. Cost me a lot of money and grief. That’s how I see Trump. People looking for some sort of magic bullet that does not exist. For me, I know way more about what Republicans are against than what they are for. I hope this does not end as catastrophically as my marriage to the poseur.

 

On Monday, when I came home with an “I Voted” sticker, I got lots of comments. “Good for you!“, “I sent in my ballot by mail but did not vote for president“, “They never sent me a ballot. I wanted to vote“, “I‘m not registered and would have to ask someone I trust who I should vote for“.  And those are just the few folks I bumped into!

Not enough people have learned history, take it to heart and act on their huge privilege and responsibilities. All the wars that have been fought for independence! The battles for each vote to be counted. All the gains that each of us have benefitted from thanks to those who went before us. I read this article yesterday and it means even more to me today. The Big Con: what is really at stake in this US election

As I always say….it’s easy to be against things…..but it’s a lot harder to be for things and DO SOMETHING. What are we all going to DO now?

I went to bed miserable and woke up miserable. This feels like congestive heart failure all over again. My feet and legs are grossly swollen and it’s hard to breathe fully. It could be partially due to the trepidation I feel thanks to the election results. I wish that was all of it!

Yesterday a humongous moving van was here for hours…unloading lots and lots of furniture. It went to the apartment above my head. I always leave the bathroom exhaust fan on 24/7 because of cigarette smoke in the building. Sometimes when I use the bathroom, I turn off the fan so I can hear the news. When I did that tonight, I could tell the upstairs fan was on. In 2 minutes or less of having my fan turned off, the bathroom filled with cigarette smoke 😦 So many things are making more sense. Must be a smoker up there. That’s why my lungs hurt so bad!

For supper, I had a salad. My jaws were so weak after eating it that I quick had to pop a Mestinon. Sooooo….it’s not my imagination that myasthenia gravis has been acting up. I was too weak to drink water, talk, breathe. YIKES! The only “good” thing is that when I am hugely swollen, I don’t lose consciousness. My feet and legs feel like they are going to burst 😦 Darned hard to breathe!!!

For a few days now, the finger next to the pinky has been red and swollen, then it had pus. I drained it yesterday, but the grossness is back and hurts even more. Such a tiny boo boo for all that pain and annoyance.

Just as it was getting dark, the sky in this pic had billows of light gray smoke. Almost as soon as it registered in my pea brain, there were lots of sirens. I have no clue what’s on fire or where. I can sure smell it, though. Aaaaaachooooooooooooo!

One good thing is that UPS showed up this morning with a new part for my heart monitor. It has been uneventfully working ever since. Olive likes to supervise.

I forgot why she was giving me “the look”.

Hmmmmm….should I take that personally? Maybe that’s the face she made when the TV was talking about the latest election politics 😛

I got up out of my chair and came back to Olive rolling around and around….doing that wiggle that means she is very pleased with herself 🙂

Do you ever look at your back?

 

I put on a shirt I haven’t worn in months. It’s OK if I am standing, but when I sit down, the shirt rides up over my belly, showing naked skin. Not suitable for public appearances 😛 Darn hernia! But…..what caught my eye is my buffalo hump. That’s another lovely side effect of steroids. It’s danged hard for me to take a pic of my back. I didn’t realize the hump had gotten so huge.

Went to bed early last night and got up today at 6 AM. It was 70 degrees at 11 PM, then 68 when I woke up! On the news this morning, they say we broke records for high overnight lows. It has been sprinkling out there off and on. I decided to call the hospital right at 8 and thy told me to be there at 8:45. Just made it 🙂

Isn’t that just the coolest light ever? Most of the city was in darkness while these buildings were lit up by the sun.

I got my port flushed and then went over to Moran Eye Center to ask about my eyes. I talked to a nurse quite awhile. She says I have syncope and that explains all my symptoms from whooshing head to blurry vision to losing consciousness….and the turning bright white, then bright red, sweating like crazy and having my pupil take over my eye. She said I need to be referred to the Faint & Fall clinic. Geeze…last time I went past it, I laughed. Laugh’s on me, I guess. Now I am just waiting for my internist to get back to me.

Hospital complex when I got off TRAX

To get to Huntsman from TRAX, I have to so down seemingly endless skyways and halls. This is what my vision is like.

Everything is handicapped accessible until I get to this one stupid door without an opener at Huntsman. I am always mad when I get to this bottleneck. Soooooooooo hard to get through! It’s very heavy with a strong self-closing mechanism.

View out the hospital window…looking towards the Great Salt Lake

While I was sitting there, a medical helicopter took off.

Here’s the BMT clinic waiting room where I wait to get my port flushed in the back.

I have already tried to get the internist and NP help me with this, but nothing happened. I decided if I am not going to get palliative care/hospice services right now, I’m going to push for somebody to do something! This is getting ridiculous. I want to either be ALIVE or DEAD…..not this place of hell in the middle. Can you tell I am feeling feisty today? I am profoundly tired of being pushed around by some and pushed to the side by others.

I stopped off at Trolley station to get a haircut. This time I went to Super Cuts. I hated my last haircut at Great Clips. I even got some stuff to make my hair stiffer. A cross between mousse and waxy junk. It’s called Re-Works Texture Cream. I was feeling rich since I made a mistake figuring out my bank balance and had more than I thought 🙂 I have never sprung for salon stuff before….at least that I can remember!

Got home and ate my on sale with a coupon, 99 cent Tai Pei Beef and Broccoli. I don’t think I ever had that before. It was worth 99 cents, but I sure wouldn’t pay more for it. 61 carbs.

When someone knocked on my door, I didn’t answer. Luckily he had a key and came in 🙂 It was the maintenance man and not Hyper Helen. He claims my closet door is now fixed once and for all. I hope so. I haven’t got up to look yet. Soooooooooo dizzy!

I am hoping and praying lots of Democrats win on election day. Republicans are killing me 😦 Democrats are once again going to try to get us folks a one time emergency payment to make up for the Zero to almost zero COLA increases. Everything that I buy….like meds, food, internet and rent just goes up and up and up 😦 Not very nice to seniors, veterans and disabled people to live on vapors…..especially while subsidizing wars and corporations. I wonder what the world would be like if it was founded on justice and mercy???

Hyper Helen came to my window. Then after she was gone, more knocks on the door. It was the woman who took care of Ethyl just before she died. She handed me a hospice business card she claims was stuck in the door crack when she got here. She told me lots of stories of drama between she, Ethyl, people who live here, management and the hospice company. Ick. She also said the hospice company everyone wants me to switch to does not offer help with laundry or cleaning. Makes me miss NY! It was sooooo easy there to get help after my stroke. In Utah it’s looking like people are SOL. Fine…I’ll just wait until someone gets me real angry, and go do laundry by myself then 😛 I’m thinking I have no patience for anyone helping me! The more people insinuate themselves into my life, the more exponential the drama gets.

I have been looking up more about syncope. When I was younger, paramedics and ER peeps told me I had Wolff-Parkinson-White syndrome. When they talked about syncope, I thought it was just the medical name for fainting. Now I am understanding there’s a lot more to it. It’s what causes the syncope that’s important. The NP agreed with me that it’s my hernia hogging up the blood so there’s not enough left for my brain. Syncope is a frequent cause of ER visits and death in the elderly. For me, the problem is also my ever-present dysautonomia. This was part of the reason to put me in hospice in the first place. My systems are breaking down and there is only so much docs can do.

No fighter jets, please

What the heck is it supposed to prove? Why do fighter jets fly fast and low over cities and towns for the 4th of July? Scares the crap out of me 😦 There were 2 flights before I closed the window and turned on the A/C.

When I was a kid, my father was in the National Guard. He was at Camp Drum, which is now Fort Drum. I don’t remember if it was 4th of July, Memorial Day or Veteran’s Day when they put on their shows of force. It left an indelible impression on me, though. There were family days when servicemen brought their families to the base. This was the Korean War-Vietnam War era. Everywhere from my summer camp to the Guard had leftover Army gear. Quonset huts from WW2 dotted the Syracuse area. Everywhere you looked was stuff left over from wars.

Well, the Guard would put on war simulations for families to watch. They blew holes in things with tanks, shot off bazookas and used flame throwers. I thought it was creepy then and it’s still creepy to watch shows of force now.

Yes, there have been actual wars that vanquished evil. But most wars have been fought for reasons of power and resources. The US wanted what someone else had. Now most wars seem to be driven by greed. The Pentagon eats up huge amounts of money and they claim they don’t even know how they spend big chunks of that. And a lot of what they do spend money on is scandalous. Money goes to contractors who bilk the government of billions of dollars. The US spends as much on the military as the next 7 countries, combined.

What that means in practical terms is that there is less money available for education, housing, science, healthcare, alternative energy and all the things that make this a better world for real people, here and now. The US government makes choices based on lobbyists and corporations rather than regular citizens. We are the ones who lose.

Ugh…back to me. Very weak and shaky. My blood sugar is not low. It’s MG this time. It figures I would get a phone call at my worst 😦 It was a guy from church saying he would like to come visit tomorrow night. He could not understand me at all. Lots of long, awkward silences while he tried to figure out how to respond. He probably thought I was drunk 😛 I guess the bishop did not warn him about my broken voice. Have I ever mentioned how much I hate the telephone????????

How do you like my 4th of July lunch? Ice cream, strawberries and blueberries. Patriotic, huh? I planned ahead for this treat. It’s a lot easier to pull off than end of the month holidays like Thanksgiving and Christmas.

Now….about patriotism. Made me gag watching the news today. Of course the sort of patriotism that is rah, rah war is what media portrays and encourages. That’s not my idea of something to celebrate. We should be able to protect our country and help our allies. We should not be off fighting ideological wars for the sake of corporate welfare. If we are talking welfare….it should be for everyone’s benefit in clean air and water, decent housing, good food, a supportive environment. Right now we are a nation deeply divided. I’ll be darned if I can figure out what motivates most people. We should be aiming for good, decent lives under good, decent conditions.

Wars are great ways to manipulate people. Patriotism in the old days promoted a sense of community and shared sacrifice…us against them. People were manipulated to feel guilty for not wanting to fight by using peer pressure and fear. If you did not step up, you were a coward who was guaranteeing the death of innocent women and children. It sure seems like much of history in hindsight was based on wrong premises. How much fighting actually accomplished anything? Were there other ways to seek peace? Or was it all sponsored by corporations and power hungry men all along? Wars make a lot of money for a few at the expense of many.

When it comes to the 4th of July. I think it’s great that, at least in theory, we have freedoms. I like watching fireworks; red, white and blue are pretty colors together; picnics are nice; the weather is usually decent; it’s fun to have something to celebrate.

I wholeheartedly believe in the original reason to celebrate the 4th of July….the rest of it….not so much. It has become much more than celebrating our freedom from England. In some circles it’s a contest to see who can seem the most “patriotic”, which they really mean to be a combo of nationalism and jingoism. I like this definition of patriotism. By “patriotism” I mean devotion to a particular place and a particular way of life, which one believes to be the best in the world but has no wish to force on other people. There was a time in my life, when I believed the hype that the US is #1 in everything. Then I spent a bunch of years as an adult in the US….and realized our country is great for some and not so great for others. It depends what your skin color is, how wealthy you are, who you love, what your religion is, who you know…and all that sort of thing.

For those of you who need fortification, try this article. 21 maps and charts that prove America is Number One.

There’s a big difference between today’s wars and defending America to keep us safe. I wish more people had meaningful conversations about that. Ever since I was a kid, those conversations were cut short by “love it or leave it”. Totally ridiculous. I can love this country and NOT be happy with everything done in its name. I love God, but I sure as heck don’t agree with all that’s done in His name. We need to speak up, not just keep quiet. Bonus…this video was done in Vermont 🙂

The Story Of Woody Guthrie’s ‘This Land Is Your Land’

Anything….everything

I woke up shakier and weaker than ever. My blood sugar was 66 😮 I quick ate a banana and drank some chocolate milk. An hour later, my blood sugar was 286. I shot up Lantus and ate a pb&j sandwich. My blood sugar went down to 182, then up to 299. I feel like a war is going on inside my body. I feel beat up. What the heck is happening???

Someone wrote this post today. I thought it was a pretty good explanation. Let me know if you try it. Does MG make more sense to you now?

Please follow along with me.
Lift up your right arm, now lift up your left.
Look up as high up as you can, then look to the left, then to the right.
Breathe in deep, exhale. Do it again.
Lift your left leg, then your right. If you are standing, take a few steps forward, lift your legs like you are climbing stairs.
Swallow.
Squeeze your right hand, now squeeze your left.
Lift your head up, turn your head to the right, turn it to the left.
Move your jaw, like you are chewing and swallow again.
Take a deep breath.

What did you just do? You have engaged your voluntary muscles. These are the muscles that are affected by Myasthenia Gravis. These are the muscles that become so weak that you can’t use them. These are the muscles that with repeated use, become weaker and weaker. Because of antibodies attacking the receptors on the muscles, the muscles can’t get the message that your brain is sending to move those muscles. The medical community says that “with treatment, those with myasthenia gravis can lead a normal life.” This has not been true for me. Their definition of normal is clearly not the same as mine.

I have learned to live with the symptoms. When eating, I have learned to swallow, and then rest before I swallow again so that I don’t choke on my food. I have learned to lower my standards as I was instructed to do when I was diagnosed, now my yard is full of weeds. I have learned that resting is a proactive activity – real exercise is not. (Yes, I do exercise, but it’s not the same as a real workout.) I have learned to walk the disability path which is filled with obstacles and judgement. I have learned to ignore fear and to choose happiness.

Thank you for following along and doing this – You are welcome to share my post and I would appreciate it very much if you would. Your support is priceless! Thank you for becoming aware. Now you can say… I have heard of MG
‪#‎IhaveheardofMG‬
‪#‎MyastheniaGravis‬

My shrink came to visit today. I was OK, then got weepy. I feel like all the fluctuations and oddities and pains are making me crazy. He seems to think my mental health is pretty good…especially considering all I go through with healthcare and other promises that are dangled in front of me and then snatched away. Yup, rigged system, alright. Sigh…..

Did you hear about Social Security cost of living raises? The small increase in Social Security next year — which equals an extra $2 for someone getting a $1,000 monthly check — would come after retirees got no increase in Social Security benefits in 2016 for the third time in four decades.The final COLA figure is typically not determined until the fall.

How the heck am I supposed to survive on less and less each year? My buying power is going down in leaps and bounds, while my COLA is in pitifully small increments. It’s hard to get too excited about existence without decent food, shelter, transportation, healthcare, etc. And speaking of transportation…UTA is at it again. When I first moved to SLC, they were working on a new TRAX route to the airport. Now that it has been running for 3 years, they want to tear part of it out. This is a good lesson about slant in the news. This version is all sanitized, to make the whole thing sound logical. Then there’s the local paper that actually investigates news stories. The Trib story, but especially with comments, gets more to the real problem of graft and greed and wasting money. Utah makes me sick 😦 One of the sponsors of bills to lower COLA is our own Congressman Jason Chaffetz. He started out as a Democratic Jewish guy, then became a self-righteous LDS Republican. I miss Vermont!

 

 

Makes sense?

Everything about politics lately feels like a loss of common sense and a march towards mass confusion. I do not agree with everything said by this guy, but I found it to be a fascinating read. Democracies end when they are too democratic.

At 9:30 AM, I got a call from the doc’s office. The woman had such a heavy foreign accent, that I struggled to comprehend what she was saying. I tried questioning her, but it was obvious she was just the messenger, and knew nothing about what’s going on. She said a letter had been faxed to the hospital I was in a year ago February. The fax told either the hospital or my old neurologist to give me IVIg. Huh??? I already told the docs that the neuro said I was too complicated for his practice and was supposed to go back to the U. I cannot do that because the U has some kind of weirdness about people with MG. According to them, we all have conversion disorder. The neuros there are way more interested in ALS. Most people in Utah that I know, go find an MG-friendly neuro not in the U system.

So….what’s up? Why would the docs try to get my old (good) neuro to take me back? The poor guy bowed to pressure from his colleagues. I feel bad about the hardball my neuro, neuro-optalmologist and internist have had to endure on my behalf in order to treat my MG. And now the CNP and GP want the neuro to try to buck the system again? My first thought was how futile that is. Who can fight the U and their insurance? I already tried in court. Will any amount of arguing that I need treatment make any difference? Are my docs naive? Are they brilliant? Are they clueless? It will certainly be interesting to see what twists and turns this takes!

Yesterday I sent all the medical records from my good neuro to the CNP and GP so they had ammunition to fight for IVIg approval from my insurance. I did not expect them to try to recruit him in the fight! I explained how the U neuro told the judge that he was going to give the good neuro “a talking to” for treating my MG….and the next thing I knew, the good neuro that had fought so hard for my infusions and given me IVIg in ICU had dumped me as a patient….by order of the evil neuro at the U. I also pre-emptively forwarded the letter from my mental health counselor stating that I DO NOT have conversion disorder. I’m sure glad I ran to the mental health agency after all the BS from the evil neuro trying to avoid treating MG…by telling the judge that I had conversion disorder instead of MG. Funny that the U tries to pin Munchausen’s and conversion disorder on me (and many other MG patients), yet they never once referred me to a shrink.

It would be wonderful and amazing if this whole quagmire could have light shown on it by people capable of influencing the system. It’s not easy to fight big egos and monetary interests. Can it even be done? Will the U keep up the threats and coersion so that docs cannot treat me? Feels like a spy novel. Sigh….

All day I have had mind-piercing photophobia. Any light hurts my eyes and my whole head wicked bad. Closing the blinds just wasn’t enough. I took a 4 hour nap. When I woke up I was confused about time and place. It took awhile to feel cognizant again. Now this evening, the photophobia is just as bad as it was this morning.

In my past, the only times I have felt like this are when I had mono, aseptic meningitis after IVIg and when I had the worst WNV and it was presumed to be affecting my meninges. Anyone with the sort of symptoms WNV gave me is assumed to have had some degree of viral meningoencephalitis. I had a lumbar puncture, but from what I know now, it was not at the right time as WNV progressed. It’s only in hindsight that many of us West Nilers are labeled with viral meningoencephalitis. I’m not sure any of that matters. What matters is the photophobia happening NOW that has been getting worse for days. I have whole head pain at the almost unbearable level at some point each day. My 800 mg Motrins and the steroids aren’t even touching it.

Another thing I need to talk about is my fluid system. It’s nuts! I often talk about me being a bag of water. Medrol, unlike prednisone, always makes me pee more. This is getting ridiculous. No matter how much I drink, I pee out even more. My skin is dry. I am dehydrated. I have been craving salt like crazy, but it’s not helping to keep enough fluid in me. I have been putting obscene amounts of salt on my food. Usually that would gross me out…but now if I don’t get enough salt, I am very nauseous. The CNP says it’s my autonomic nervous system gone haywire. That’s what lots of docs in my past have said, too.

But DANG!!!!!!!!! Somebody has to do something pretty soon! I feel horribly awful today. It’s the old feeling that I have been kicked in the kidneys by pointy cowboy boots. It scares me that the cat wants to lay up against my kidneys and that she has gently pawed at the spasm in my throat. What does she know? How does she know it? Her little face looks very concerned and she meows. I think my kidney area is hot. She’s a heat seeker.

I have been having the same sensations in my hernia that I feel in the swollen purple veins of my hands. When I first stood up after my nap, the pain and weird feelings from that almost made me faint. Something is very wrong with my abdomen. It’s rigid, and when touched, sets off a whole flood of spasms.

With me, things are always getting better and worse. It’s hard to know when worse means I need to beg for medical care. I don’t care if this stuff kills me….it’s the in-between place of feeling neither alive nor dead, and in lots of pain that scares me. Tonight it feels scary.

 

So many marvels!

I slept deeply and peacefully last night…with only one trip to the bathroom. When it was time, I woke up slowly and comfortably. The first thing I noticed was that I was not horribly queasy. I just sat up in bed! It was not like climbing Mt Everest. It did not make me short of breath. I stood perfectly still and put on my nightgown over my head, while raising both arms. I walked to the bathroom with only minimal pain. I lightly held onto the walker instead of clinging to it for life. I both sat down and stood up from the toilet without using both hands. I just moved in space without support. I shot up my insulin without being doubled over in pain. I easily drank down my juice with Miralax. There was no trouble raising my arm and no trouble swallowing! I was not mind bogglingly dizzy. I could see just fine. As I filled my weekly pill box, I realized it was easier to think. I was not doing everything in a stupor. The cloud had lifted.

The difference in quality of life is HUGE! It’s weird that I accepted all my difficulties and figured there was nothing to be done about them. I thought without IVIg, I was just stuck being permanently miserable. Unfortunately there are drawbacks to steroids. After awhile, the side effects build up and are as bad as what was wrong before. Steroids raise blood sugar, weaken connective tissue, cause weight and fluid gain, accelerate cataracts, cause a feeling of “permanent PMS”, etc, etc….

I had gotten up at 3 AM to take my night dose of Mestinon and Motrin, so I wasn’t due to take more until 9 AM. I finally remembered at 9:30. Then I got up to make breakfast. I made hash browns, eggs, tomatoes, half onion, half avocado, 2 slices Provolone cheese and some Hatch Valley Salsa (for $2.33). About half way through I got SOB, it was painful to stand, I got wicked bad dizzy and I felt sick again. I sat down with my plate of food and gulped air. I struggled to breathe a few more minutes and realized DUH!!! I had not yet taken the Medrol and Plaquenil.

I got a good loading dose Friday/Saturday because I took 6 pills Friday night and 5 pills Saturday morning. Today I only took 4 pills. I hope the feeling of well being comes back. At almost noon, I don’t feel well at all. Boooooooooo……hisssssssssss…..

My neck/back of the head is swollen up, I hurt all over, I’m queasy. I am bummed! I found myself once again hunched over and leaning as far forward as possible so I can breathe. At 3 PM, the wicked bad headache hit, my right arm doesn’t want to lift and my lymph nodes in the groin area are back to being painfully swollen. I am starting to hate life again. This sucks. I need more steroids.

The good news is the lesser dose of steroids hit around 6 PM. I can lift my right arm again. I am in limbo between feeling OK and crying about it. I have been going back and forth according to how well my meds are working at that moment. I sure would love to be put on a daily dose of steroids to keep me feeling well and even. But…..all that would be unnecessary if I just got regular IVIg. Steroids have a lot of bad side effects.

I have come to realize how unimportant I am in the scheme of things. An old, poor woman is not worth very much. Few people want to waste resources on me. Utah sure doesn’t.

Olive is my guardian cat. She is very conscientious about reminding me to take meds. It’s me who needs to remember what she means when she starts tapping me with her paw and meowing.

Expenses

Here’s an article about how much it costs a single person to live in a city. Poor and disabled folks like me need to live in a city for public transportation, sidewalks for my power wheelchair, access to groceries, nearness to hospitals and docs, etc.

Here’s a graphic about food costs in Salt Lake County.

Sooo…let’s assume it costs $2.84/meal to eat OK, but not fancy. That’s $264.12 for a month. I get $91 SNAP, so I need to come up up with $173.12 in actual cash to eat. Just rent and food would add up to  $723.12, leaving me $9.88 for everything else for the month. Not possible. The SNAP benefits formula assumes other money is available. Ummmmm…from where???

I am going through my notes and trying to come up with a totally realistic budget. How much does it really cost to buy what I most need and want? There is absolutely no way I can pay for necessities on $733/month. It’s just not happening.

Rent $550/month. 75% of income

Medical co-pays and over the counter items @$60…prescriptions, doctor visits, generic Miralax, probiotics, generic Zyrtec, stool softeners, vitamin D. 8% of income

Internet @$50…that’s scary right now. This is the last month before service doubles in cost and no one seems to know how much the lowest Google rate will be or when it will become available. With no internet I would not have much of a connection to the world. 7% of income

Supplies @$30…toilet paper, kleenex, dish soap, dishwasher detergent, cinnamon toothpaste, shampoo, hand soap, lotion, tea tree antiseptic, etc. 4% of income

Cat @$20…litter, dry and canned food, cat treats, toys, shots, vet. I feel better after reading this article. Everything I list as an expense makes me feel soooo guilty! 3% of income

Laundry @$20…soaps, dryer sheets, spot remover, machines 3% of income

Personal…haircuts, whatever else I might need…(only $3 left of $733)

What I have no money for…..many things people take for granted… dental care, over the counter meds that docs tell me to take, clothes, shoes, replacing things that break or wear out, restaurants, movies, Netflix, cable TV, make-up, hair coloring, a vehicle, gifts for other people, postage, going to an event, buying myself a present, anything frivolous, occasional treats, decent furniture, savings, going on trips, anything!

Food….with what money??? I already spent more than $733. Sigh….

Tithing….there is no money left for that.

Approximate minimum cost for things, in dollars. My reality is depressing 😦