Sad Jean Was Sad Today

Something happened today.  Not sure I even want to blog about it, but here goes anyway.  I have a friend who has been my friend for a very long time.  She always kind of treated me very casually, though.  I often felt like an afterthought, like I didn’t really matter to her.  An example:  we would agree to meet for lunch or whatever, and she would always be late.  Sometimes she did not turn up at all.  There was  never a call to let me know she would be late, or not come.  It made me feel like I had no value to her, like I didn’t matter at all.

I have another friend, who did the same thing today.  She did call, two hours later than I was expecting, and it really bothered me.  That she didn’t call earlier to let me know she would be late. She has a cell phone…that I gave her.  She could have used it.  But she didn’t.  It really made me feel that same, ‘Wow, I really don’t matter.’ thing.  I spoke up about it, and then let it go, but it bothered me a lot.  My friend has gradually backed off from me, like my other one has done since I became ill, and this almost just felt like the nail in the coffin.  Her reasons for backing off seem to be a bit different though.  She didn’t know me when I wasn’t ill, it’s just that she’s made new friends and is engaged in doing new things and there is less time for me.  She doesn’t really need me anymore.  I get that, and I always expect it to happen.  It still hurts, though, whatever the reason.  It hurts to think that you don’t matter as much to someone as they do to you.  It hurts to feel like you are not important enough to be polite and courteous to.  I would not leave someone hanging if it was at all possible to let them know what was going on, but it’s okay when others leave me hanging, because what?  I just don’t matter?  I don’t like feeling like this, but I will process and assimilate it, and it will become one more part of my idea of who I am and what place I have in the world.

On the bright side, I did not need a recovery day after all.  I am so much better on ten mg prednisone, am going to call doctor tomorrow and try to negotiate staying on it.  I know down the line there are bad side effects, but for right now, a sort-of decent quality of life is pretty darn inviting.  Let me keep it for awhile, please.  Being able to function, to do things I want, when I want, I think if you’re not sick, you don’t really appreciate that.  Fingers crossed.

Chronic Illness Can Be Fun

Oh, wait.  No it can’t.  I had a doctor’s appointment today, and had to use the Dial-A-Ride, which is a sort of state-run taxi service.  Got me to the appointment an hour early, then after, Ihad an almost meltdown, because first, the door I went out turned out to be at the back of the building and I walked all the way around to the front.  It is in the90’s, with a dew point near 80, so half way around I was already exhausted and in a lot of pain. Stopped to lean on a liht pole and call the Dial-A-Ride to pick me up.  Have to press one.  Could I remember how to press one on a cell phone?  Heck no.  Exhaustion and pain means non-working brain.  Fun times.  Called my friend, who was busy, but I was desperate, left a message.  Remembered how to dial an extra number, called DaR, tried to call friend back to say nevermind, phone would not work, then her machine would not pick up.  Waited almost an hour for DaR, and friend called just as I got my mail in the lobby.  Tomorrow will be recovery day.  One of the most limiting things about the illness is just that…when I am exhausted and in pain I cannot think what to do next, and I have been stuck out in the world not knowing how to get home.  Not fun.  But all is well now.  I am home in the nice cool air-conditioning.  Going to order in later, because meal prep is just not on.  🙂

Ah, Medicine

Took the Plaquinal, even though I wanted to wait til test results were back, but doctor was adamant.  By third day, the side effects were ON, man.  Fun times.  Stopped taking pills.  Turns out, don’t have either polymyalgia rheumatica OR rheumatoid arthritis anyway.  I  keep telling myself not to listen to doctors, but I’m usually exhausted and in pain and so get worn down into giving in.  But happy Jean is happy not to have another crap illness to contend with.

Am binge-watching Veronica Mars, one of my all-time fav shows, from the start before I get into season 4.  I saw the movie when it came out, and was so  pleased it was like an episode of the show.  Usually movies turn out to be crap, sometimes seeming to have nothing at all to do with the tv show.  Disappointing.  Sense8 was one that did it very, very well.  I had it on auto-play and didn’t even realize it was the movie til it was over.  Duh!  That’s good movie-making.

I have been Getting Things Done, some real-world, but a lot of computer stuff.  Completely wiped new laptop and set it up from scratch, and tinkered and played and mucked about, and it is actually working pretty well.  Been tinkering and cleaning and deleting tons of crap from the old laptop, and it too is working much better.  There are things you can find to do that I was unaware even existed, but I just keep clicking on things, and looking things up, and it’s all good.  So far.  Also started using Vivaldi Browser.  You can get extensions from the google play store while on Vivaldi, although some don’t work well, like Keep, but you don’t really need an extension for that.  Firefly has been my browser of choice since I first got on-line, but every update seems to make it work less and less.  It takes forever to open some pages, their address finally loads into the address bar, but then the page is just blank.  So keeping it for when I want to save pages as text, which for some reason vivaldi (and chrome) don’t do.  Why.

So off to have a beer with Veronica.  Oh, wait, she’s underage.  Off to have a beer while I watch Veronica..  Good times.

Update: Forgot.  The reason I am getting things done is Dr. also upped prednisone from 3 mg to ten.  After being in so much pain I could barely turn the key in the lock, three hours after the larger dose, I was 80% better.  Prednisone is a miracle drug, but it does some serious bad stuff along the way.  Serious bad stuff.  So ten til Thursday, then eight for a week, six for a week, then five til I see her in Sept.  I hope I don’t get worse as I decrease, which  is usually what happens.  Happy, happy, joy, joy.  Or not.  🙂

Illness Update, Gripes

Was in a lot of pain for awhile there, saw rheumy Wed, said I was in a flare, but not a fibro flare. I seem to have developed polymyalgic rheumatica and/or rheumatoid arthritis, and since a triple dose of prednisone made me 80% better in three hours, it seems to be fact. Had hand xrays and blood tests, and am starting plaquinal today. I’ve heard that name, but need to research it. But I will take it if it prevents more flares like the one I just had. I could not turn a key without much, much pain. So happy, happy, joy, joy. Always nice to get sicker instead of better. NOT! But hey, life is what you make it, and I choose to make mine fune and fulled with laughing. Laughing is good.

As for gripes, here’s an article I just came across: Blackstone Digital Audio and possibly Amazon

Seems this digital book company has a deal with possibly Amazon, so will not provide their e-books to the public for three months so possibly Amazon can have them exclusively for those who pay possibly Amazon. Amazon bought Whole Foods, and if you have Prime, you get cheaper food. I think this all disrupts supply and demand, which is/was the basis for our economy, and wreaks havoc with the system. In order to get a better price, or even access at all, to some things, you first have to give some money to Amazon. I can’t be the only one who sees what a disaster this is. Deregulation, letting one company buy up all forms of news outlets in a single area, letting companies buy up and demolish their competitiion, none of this is good for the consumer. I can’t fix it, but you all can with your votes. It matters that you vote, it matters even more WHO you vote for. People seem brainwashed to vote against their own best interests. IDEK.

More: Amazon and the Economy

Lazy Jean is Lazy

Because while I am slightly better, I am still struggling with fatigue and pain, and also cleaning up my old laptop in  hopes it will run better.  So far, it’s helping.  God, the stuff you accumulate.  At least it doesn’t take up real world space.  I wouldn’t have room to walk in here if it did. I wiped the new piece of crap completely, and just have to get the key off the router to set it up fresh with the internet.  I doubt it will help, because I may have mentioned that it is a piece of crap and I will never buy another Dell again ever.  They thoroughly shafted me and couldn’t care less.

So here’s a comment Iazy Jean made on here so I don’t have to come up with all new content.  :):    https://hyggelightwork.com/

“One thing I’ve learned since dumping cable and antenna tv (I’m a Streamer, apparently, although what I really am is a fan of no commercials and no Trump in my face) is that my life is much less stressful and depressing. My mental health is more important than seeing all the bad that is going on, and all the things I don’t need that people insist on trying to sell to me. Imagine reading a book, and every ten pages someone jumps up to sell you cereal or a new car or the latest medicine (drug).

Bad stuff has always gone on, and always will. I can’t fix it. Humanity has not yet evolved into enlightened beings, and I”m not sure it ever will. Hate and fear and needing to be feel superior and selfish and greedy (Mine! Mine! Mine!) seems to be our genetic lot. Subjecting myself to it every day is extremely detrimental, so I have stopped. You cannot avoid everything, but you can give it a good try. Twitter is especially bad, it’s all negative, negative, negative. I rarely visit there. I am very selective in who I follow on FB and Tumblr, too. Fix your own world. Be kind, be helpful, vote for good people, even the dog catcher, because bad people seem to rise to the top more than the good ones do. Don’t let them get a foot in the door. There is a lot of good in the world, and we tend to focus on the bad. I read somewhere that we are programmed to remember bad stuff, I think because it kept us alive way back, but bad stuff is different now, and we need to work harder to avoid it. A major thing, in my opinion, is to do, read, listen to, those things that make you feel good, and avoid, avoid, avoid, all the shit that is out there to make life feel miserable. I know someone who watches Fox News, for example, and does not agree with their propaganda, so is always angry. This is deliberate sabotage of his own well-being. Why subject yourself to things that make you angry or frustrated or depressed. Why? Sometimes I think we are not the sharpest tacks in the box.

Stress is not good for fibro, and reading about all the shit that goes on is very stressful. Spending a lot of time on electronic media, tv, computer, etc., interferes with the ability to sleep well, too, and also cause stress, even if you’re just reading fluff and looking at pictures of rainbows. I prefer to read a book or fan fiction on my old unlit Kindle. It does not have the same effect on you as the others do.

The pain will get better, mine always does, eventually, but if it doesn’t, speak to your doctor. Sometimes flares can set up a feedback loop of pain and you may need outside assistance from your doctor to break the cycle. I’ve had this crap illness for 20 years, so I’ve figured out a few things here and there. I think.

Okay, feeling wordy today, but I had to save myself and my own sanity, and this is how I am doing it. I cannot fix the world, I tell myself this every day. No magic wands here, unfortunately.”

 

 

 

Fibro Article

https://www.healthline.com/health/womens-health-fibromyalgia

It mentions that fibro is not considered to be a progressive disease.  While that may be true, the effects on your body are progressive.  The more pain and fatigue, the less you can do, the more out of shape your body gets which causes more pain and more fatigue. It’s a no-win situation as far as I can see.  I’ve had physical therapy, gone to a clinic for progressive exercises, done things on my own at home.  No matter what it is, I always wind up worse off, because at some point that delayed pain response kicks in and it can take months before it settles down again.  Right now, for no discernible reason, I am having seriously major fatigue, much worse than normal.  Everyday is worse that the day before, until I can barely feed myself  Why?  I will never know.

Okay, on another subject.  How the mind works is fascinating to me.  I start out thinking about one thing, and wind up with an entirely different issue.  Example.  I was thinking the other day how June used to be thunderstorm month in New England, and that seems to have changed in the past few years.  This got me thinking about growing up in Colorado, where when I was very young, we had hail storms and thunderstorms and lots of heat lightning.  This reminded me of an incident when I was small.  We lived across town from the state fair grounds.  One evening during the fair, there was suddenly a very loud whistling noise.  My father went white, and you could see him visibly trying to keep himself from panicking and taking cover. It was a firecracker that sounded so much like a bomb dropping.  We were all terrified, mostly because of his reaction, but because we kids had no idea what was happening.  This reminded me of how he used to jump at every loud noise, which led me to the sudden realization, after all these years, that my dad suffered from PTSD.  Not a happy thought, but the interesting bit is how you start here and wind up there in a matter of seconds in your brain.  Apparently a lot of people were not happy about the firework, either, and that never happened again.  Did they not think before setting off something that sounded like a bomb dropping?

Speaking of rain, it looks like it could pour any second now.  I do love rain.

My friend Tess cut my hair yesterday, and my head feels about ten pounds lighter.  It’s a good thing.  I was to the point where messing with it was too difficult due to pain and poor range of motion in my arms, so chop it off.  She did a good job, too. Who knew she was so multi-talented?  I mean she paints, and sews and decorates, and cooks and has numerous talents I can only dream of, but I never knew hair-cutting was one of them.  🙂 She even has her own scissors.  Apparently hair dressers have scissors like chefs have knives.  Who knew?

I really need to lie down now, so later, people.  Hope you all are having a great June.

“A Good Book”

“I went home to read a good book and settle in for the night.”

I see similar all the time, which makes me wonder if anyone has ever gone home to read a crap book. Or just to read a book. It’s always “a good book”. I think too much.

I am having a pretty good spell, maybe because the weather in Southeastern Mass has been absolutely fantastic. I wish all summer could be like this. I am trying to absorb it to remember when the hot and stickies get here.

Had a lovely long chat with one of my homemakers today. Her English is terrible, and while we were trying to figure something out, she kept giving me different info. It’s 100 dollars. Added to 1,000 dollars, so 1100 dollars. No, it’s 1075 dollars. You just told me it was 100 dollars. This went on for several different things. We were laughing so much. She knows what she means, it just doesn’t come out right. She’s really nice and fun and I’m glad she got assigned to me.

Pleased to be doing relatively well. Plan to enjoy it as much as possible while it lasts.

No picture, cause doing this on my phone. 😃

Comment I Made On Another Blog

Cause I’m too tired to think up new material.  LOL

https://fightingwithfibro.com

My comment:  “I have one goal. To have as much fun each day as is possible. I always find something to laugh at, too. When I was first diagnosed, I went to a support group for fibro, expecting tips and encouragement on how to manage life with this. What I got was a bunch of women bemoaning their fate. Not for me. It took a long time to truly accept that this is my life now, I will never go back to my fantastic job, and I cannot do a lot of things I used to do. I said that a lot, at first. ‘I used to….” Then I made a conscious effort to stop thinking that way. I focus on what I can do. Today I made risotto. Never doing that again,but I did it this one time. Yay, me. I have also had some truly rude and obnoxious doctors over the years, but move on as fast as I can. I always try to remind myself that every day is a good day and there is always something to enjoy. Today it’s a lovely breeze blowing straight in my windows. Not that I never have severely down days, because I do, but even then, I look for something good in it. Reading on the couch when I can barely move is made lovely by my super-soft blanket, and I make an effort to appreciate that. Attitude makes a huge difference in life, I’ve found, and even though sometimes it’s a struggle, it’s worth it to work on having a good one, in my opinion. That’s all. 🙂”

Important Info

Meant to post this the other day.  Tired brain does not work well.

https://www.ilrc.org/red-cards

From the page:  “All people in the United States, regardless of immigration status, have certain rights and protections under the U.S. Constitution. The ILRC’s Red Cards help people assert their rights and defend themselves in many situations, such as when ICE agents go to a home.”

This Weather!

And again it is cold and gray and possibly rainy soon.  We have so many cold and gray and rainy days this month, it’s like February, only without snow.  I had the heat on yesterday.  It’s mid-May.  I’ve had the air-conditioner on around now some years.  On the bright (I need some bright) side, it’s not hot and sticky, which is never not a good thing.

Tried some bars with no soy, since I discovered that soy is bad if you have thyroid issues, which I do.  Why does no one tell you these things when they prescribe or fill prescriptions? Rise and Zing are both pretty good, and not overly expensive.  The Rise is just almonds, honey, and whey protein.  I used to make something similar with powdered milk, but these are already made for me. I bought both from Amazon.  You know, that company that will soon rule the world.  More on food, I am still doing the Home Chef thing.  Three meals instead of 4, and so far every one has been delicious and easy.  Not over my budget, either.  Every meal serves two, so I get six actual meals of excellent food.  I’m glad I discovered this, in spite of the original billing fiasco.

Was looking through book emails and it occurred to me, how many books there are now with the “Anybody’s Brother’s Cousin’s Neighbor’s Boss’s Uncle’s Mechanic’s Sister” titles.  Was The Astronaut’s Wife the first one?  I don’t know.  But there’s a plethora of them now.  A glut.  A distinct lack of originality. Like formula books.  I read about that once where certain authors have a murder every so many pages, a sex scene every so many pages, etc.  What happen to writing a book because you had a story to tell?  Now you write to a money-making formula.  Creativity.  I’m sure it’s still out there.  Well, I know it is because I read fan fiction, much of which is infinitely better than a lot of books I’ve read. I am overly fond of Torchwood fanfiction, but the Sherlock fandom has some amazing writers.  Check  out fanfiction.net, or Ao3.com

On the illness front,  after a week back up to 3mg prednisone, I can tell I am getting better.  More energy. a bit less pain, clearer headed.  It’s a good thing.  I haven’t tried the zoloft yet, except for one day, because I thought I’d wait to see how the prednisone worked.  The PA said I will  have to be on it for the rest of my life, because once you get prednisone withdrawal, which I blame on my rheumatologist, you have it forever and your body will always need a prednisone supplementation.

Anyway, I’m kind of condensing something here that I read in AARP.  Someone commented on an article and disagreed with the premise that worry, stress, sadness, anger and obesity can worsen chronic pain.  They can, it’s true, but it’s more accurate to say about people with chronic debilitating pain, which I have, that the pain can worsen worry, stress, sadness, anger and obesity.  Pain is exhausting, keeps you from meeting obligations, doing things you just want to do as well as need to do, isolates you as friends drop away from ‘the sick one’, makes you angry at losing the life you had, and prevents a lot of movement, which of course means less burning of calories and loss of muscle mass, so weight gain is inevitable.  And a lot of the drugs you need actually cause your body to gain weight, even when your eating habits stay the same.  Here’s a good blog post that goes into this even more.

https://fightingwithfibro.com/2019/05/10/12-reasons-why-fibro-and-mental-health-issues-coincide/

And an image.

Update on the Food Thing

Remember how I said my issue was with the buying/billing.  Well that’s the only issue.  I cooked my first two serving meal (one for later, yay) which took about 15 minutes altogether, and OMG is this food good.  Much less packing waste than Blue Apron and the food is really good quality and sooooo good.  I may buy this again, even without the coupon. Eight meals at 40 dollars was a bargain.  Eight meals at 80 dollars would still be worth it if they are all this good.

This is two pork chops. 

This is the vegetables.   The only thing I did not do was chop those teeny red peppers (spicy) and add them to the butter.  They were goood. The box it came in had an insulated liner and two reusable ice packs.  This was all the rest of the packaging.  Not bad.

This is the finished meal.  There is an identical one in the frig for tomorrow lunch. That’s a lot of butter, but i moved some to the sparrowgrass.  This was the best meal I have had in ages, and I cooked it.  Normally, it takes me a lot longer than someone without a chronic illness, but most of the fifteen minutes was cook time, not prep time.  I give this meal a nine.  It would be a ten if I wasn’t the cook.  🙂

Home Chef

Here’s the thing.  I read about home delivery food, like Blue Apron, which I tried awhile back.  Decided to check out Home Chef.  You have to give your info right off, which I stupidly, stupidly did. (Hey, I get brain fog, I’m not always on top of things as I should be) Anyway, after checking it out, I decided to not.  Took me 15 minutes to find where to cancel. Which I did.  Then I discovered they had billed my credit card as soon as I filled in the info.  Okay, wait for it to be returned.  Today I get an email that my shipment is on it’s way.  Did I not cancel this as soon as I checked over the site? Why yes.  Yes I did. Blue Apron had a ton of packaging which had to be recycled or disposed of, but Home Chef is just wrong.  You can’t just take my money and ignore when I cancel.  I may call Citi and ask them how to make sure I am not billed any more.  I have had excellent service with my Citi Card, so I am hopeful they can help.  Home Chef…NO!!!

It’s My Birthday

It’s also the first slightly uncomfortably humid day of the season.  Oh, joy.  NOT!

Yesterday my friend Tess brought coffee, flowers, and a cake for two and we watched Jamie Oliver 5 ingredient cooking shows and laughed.  A lot.  Today I got presents from my DDs and an  ecard from a friend, and am spending the day alone as usual.  As I do every holiday as well.  I am so used to it, but it makes it hard to keep track of time when every day is pretty much just like every other day.  Good thing I am good at making myself laugh.  Crazy is good, people.  🙂

Some Things from the Internet

Stop Free Haircuts?
Really? ‘My god, they’re homeless, they need to get out and make money to pay for a haircut. We cannot allow this to continue.’ So pround to be an American.

Who Needs Librarians?
Well, I”m sure you know I’ve said this before, but ignorance is what is wrong with our country. Libraries mean knowledge. Knowledge means not voting for morally repugnant, self-aggrandizing, under-educated morons. So let’s get rid of libraries and librarians. Yep. The American Way.

Lamps are hard, people
I have several lamps. They each have a switch that I manipulate to turn them on or off. Every now and then I have to replace a bulb. Is this beyond the ken of modern humans? Let me pay 600 dollars for a lamp that will turn itself on and off. Okay.

I don’t know, people. Is there any hope for humanity left? We probably won’t be around long enough to find out, based on the climate shit that is going on a super-speed. So whether or not we lose the ability to turn a lamp on or off will be completely irrelevant.

Cynical Jean would love to NOT be cynical, but it’s just not possible in today’s world.

Finally

I think I am out of the slump I’ve been in.  It just hit me all of a sudden, depression, exhaustion, complete lack of motivation.  Better now.  Hope to get outside a bit today.  I hardly ever go outside, and I really need to get some sunshine.

It’s definitely spring.  Windows open, windows closed, a bit too warm, need some heat.  I love New England.  I am anticipating waking up to blooming trees any day now.  The buds are there, they just need to pop.  This one is April 25, 2005.This one is April 8, 2010

And this one from just now.April 17, 2019.  Not so pretty yet, and trees look pretty sad anyway after that butchering the highway department did a few years ago.  Look in the center right.  See that evergreen with the flat top.  I noticed that a few years ago.  It looks like someone sheared off the top, but I think that’s just the way it grew.  Looks kind of weird, though.

Here’s a closeup. Little fuzzy, sorry about that.

This is how I entertain myself, folks.  Taking pictures of trees, weird or not.  I do love trees, though.  Especially when they’re bare and you can see all the branches.

I have now been sitting here for a good hour.  Finally made the coffee, but still have not got dressed after taking a shower.  I  always seem to run out of steam pretty quickly, and then much later in the day, what ho?  I’m awake and have a bit of energy.  I’d like to have that happen in the morning, but have not figured out how to do it.  But it’s a bright, sunshiny day.  I can see clearly now.  LOLOL

Also, I am using my old desktop with Windows 7.  Compared to 7, win10 is a true piece of crap.  Been using it since I had to retire this one for not working about five years ago, and I had forgotten how different and how much more user-friendly 7 is.  Why do they keep ‘improving’ things that aren’t broken and don’t need it.  It seem that every time I buy a ‘new and improved’ version of anything, it isn’t.  Improved.  At all.  Weird thing about the desktop.  It just quit.  Went crazy and nothing worked and I tried everything I could think of to fix it and finally just set it aside for later and bought a cheap Dell laptop.  Then I started it up again a few months ago,and what do you know?  It works perfectly.  Had FIOS come and set it up because it doesn’t have wireless internet access, and it just works so well.  The Dell laptop came with 8, which I did not want, but it had a free update to 10, so I never actually had to use 8.  But 10 was not happy-making.  Geez, Microsoft, are you ever going to get it right?  Judging by the update problems going on right now, I seriously doubt it.  I’d give Linux a try, but now sure I am up for the steep learning curve.  I have a lot of foggy days, and you need a well-working brain to learn new things.  I believe I mentioned the new Dell that I bought to replace the one I’m talking about here.  You know, the new Dell that is actually a refurbed Dell that does not work even as well as the old one.  Thanks for nothing, Dell.

I really need to go find some food and get dressed, so later, dear reader(s) (???).  🙂

Well, chronic illness is so not fun

I have been consistently waking up around 10 am, which is a good thing.  But then, after an hour or so in a fog, I suddenly need to lie down and sleep.  Didn’t I just sleep all night?  Seriously?  I don’t know how to fix this.  This is just a part of the illness, I guess, but it is so very frustrating.  There are things I want to do. Things I NEED to do, but they just don’t happen.  There is no fix for this, in reality.  So it’s just something I have to live with, along with it being spring.  Lovely, gorgeous spring.  The one where I have no outdoors to be in, no garden to work in, no place to go, and nothing to do.  If I could actually do anything worth doing.  It’s the yearly springtime slump, people.  I will get over it.  I always do, because there is no other choice. Life sucks, and then you die.

Seriously

A quote from a blog review wherein we are advised that “living with chronic pain makes you awesome”.  After just living through several days of much worse than normal pain, accompanied by serious shivering at one point, I would just like to say that awesome is NOT how I feel.  Exhausted is how I feel.  Frustrated, angry, upset that I don’t have enough energy to get dressed so I can go down and get my mail.  Had to cancel Friday’s homemaker, and today’s homemaker cancelled due to illness, so no mail-getting for a week.  No trash going out, either, or laundry getting done, or shopping.

‘Chronic pain’ and being ‘awesome’ are not words I associate with one another, ever.  Just so you know.