Been hot and icky for a few days, but better now.  Lovely warm and not too humid weather.  Of course, I am stuck here inside.  Yet again I have let the Rheumatologist mess with my meds, only to be put right back into major pain all the time, and a very low level of function.  I keep falling asleep all the time, too.  After a month of getting worse by the day, I called the pharmacist, not the doctor.  She said I should be leveling out, not getting worse, and staying on 5mg is better than having no life.  Those weren’t her exact words, but the general idea.  So I’ve been back on 5 mg for three days,  and I think, athough it may be just wishful thinking, I think I am a bit better.  Let me tell you, Tylenol is useless for pain.  I think it works for headaches. Period.  I don’t really get headaches, so not enough experience with it to be sure.  And it’s all I can take while I’m taking the anti-inflammatory.  The two together, 5mg Prednisone, and the anti-inflammatory, had me almost a real person there for a bit.  Didn’t need any pain meds at all for several days.  Then ‘You must cut back’, and here I am.  Frustration.  “Never give up.  Never surrender” Jason Nesmith, Galaxy Quest.  I am not a quitter, but I am definitely fed up. I want my life back, please.

Signed up for Audible Free Trial.  Got two free books, and bought two more cheapos.  Sent me a link.  Opened link on phone, got virus.  Turned off Now on Tap and skipped to a Comcast ad every page.  Got rid of virus, she says hopefully.  Only one book shows up on phone.  Had to call Audible when the virus struck, and while they did not mention that it was a virus (Googled it, that’s how I found out), they said to use the Play Store link.  Couldn’t have said that in the first place, instead of wonky email link?  Now I have to call again to find out where the heck my books are.  Sheesh!  Does nothing ever just work?  Stupid question.

Then there’s my new homemaker, who only shows up once a week instead of twice.  There’s always a different reason, but still.  And when she does show up, she is not really interested in doing her job well at all.  She vacuumed around a laundry basket that I had inadvertently left by the bed.  Pick up, vacuum, put back?  You don’t even have to put it where it belongs, but no.  Vacuum around it.  It was obvious on the rug.  Didn’t come at all this week, and they had to send a fill-in to take out the trash and do some shopping, no housework or anything.  Poor lady had been on a special job all day and agreed to come after 4pm.  She was really nice, but not local, so I can’t ask for her.  More frustration.

I just should have given in and called this The Whiny Post.  Pain does that. Makes everything seem ten times worse that it is.  But that’s living with chronic, debilitating illness, and that’s what this blog was meant to be about, although sticking to the subject is not one of my talents, obviously.

It is a beautiful, beautiful summer day, and there’s nothing to complain about in that respect.  You can tell that the light has changed, the days are much shorter, autumn is slowly making it’s way in.  I love autumn.  It’s my favorite season.  Guess that’s it.  Later, readers.

This is not my garden, sad to say.

You know, like ‘Spring Has Sprung’.  🙂

First yellow leaf of the year.  The snowflake is one of several my Traci gave me last winter.  I like snowflakes, snowmen, and snow.  Yes.   Yes I do.  Edit:  Forgot. It looks weird because it was taken through the window screen.

Just read an article wherein someone was referred to as ‘a celiac’. Things like this bother me, because it reduces the person to their illness. ‘He’s an asthmatic’, is another example. We are not our illnesses, we are people who happen to have this or that illness. I am a person with fibromyalgia. I am NOT a ‘fibromyalgic’. Maybe I’m just nit-picky, but I resent being referred to as an illness rather than a person.

Something I came across while reading my ‘morning’ folder:

“Republicans nominate dangerously insane person to lead America, then panic when he proves he’s dangerously insane.” From here: http://www.dailykos.com/stories/2016/8/7/1556666/-Three-lessons-from-the-rise-of-Donald-Trump

This is not that particular insane one, but this is a Republican:

This is NOT a Republican:

Interesting, if long, article, if you care about these things. The comment by ‘gratuitous’ is excellent, too.

So while it is true that I cannot listen to politicians without becoming ill, I do read about politics a lot. You need to know what’s going on, and you need to vote. It matters who you vote for, it matters that you vote, and a third-party or throw away vote ensures that Trump will win. Please don’t let that happen.

I may have mentioned how well I’ve been doing, so of course, rheumy wants me to cut back Prednisone again. Last Thursday I started alternating 4 and 5 mg.  By Wednesday I was having some all-over ache, and much less energy than I’ve been having.  Yesterday was worse, not enough energy to get up and grab something from the kitchen when I was hungry.  Today I am back to total-body pain.  My toes hurt.  My fingers hurt.  Everything hurts. I have about a quarter of the energy I had last week at this time.  Why, doctors, why do you do this to us?

Prednisone is the bad miracle drug.  It makes you feel so much better, but it has costs.  Bone thinning, glaucoma, cataracts, megalomania if you take too much, among other things.  But there is nothing else that works.  Nothing I’ve ever tried, anyway.  5 mg is a very low dose, I’m already old, so why can’t I just keep taking the amount that gives me a functional life and deal with the side effects as they occur?  I am not going back to that misery.  Last time they took me off Prednisone completely, for six months I did not set foot out of my apartment door except for doctor appointments.  I want to enjoy whatever I have left of life.  I don’t want it to be in pain, on the couch, able to do nothing.  I am not going to give in, or give up. I just have to convince the doctors.

I am in a lot of pain today, but I still went out with my friend Tess to Trader Joe’s.  Now that I have a working freezer, I can stock up on Vegetable Pakoras, Sweet Potato Gnocci, Chile Verde Burritos, all sorts of food I love but cannot prepare, and couldn’t buy while the freezer was crap. I hadn’t seen Tess for a week, and she could tell there was a dramatic difference in me between then and now.  For half a milligram of Prednisone. I am hoping it does not take too long to get back to where I was last week now that I’ve decided five is what I’m taking, get over it, modern medicine.  It seems to take longer every time this happens, but I am always hopeful.  Or stupid.

And another thing. I think I borked my shoulder this morning trying to close a window. I heard and felt a crunching noise, and now I can barely raise my arm a few inches, and of course, it hurts. Iced it. Took Tylenol. Yay. Can’t take any pain meds that actually work since I’m taking an anti inflammatory already. Fun times. Okay, done whinging for today.

1.Do you believe in reincarnation?

No.

2.Have you ever felt that you knew someone the first time you met them?

No, but I’ve clicked with people right off and felt comfortable with them, like old friends.  I think we resonate a certain energy, and sometimes you meet someone who is on the same ‘wave length’, in a sense.

3.Have you ever visited a foreign country or city for the first time and found that you knew exactly where things were?

Never been to a foreign country, except for a brief trip into Canada. A couple of hours brief.

4.Have you ever looked in the mirror and ‘seen’ a different face?

Good grief no. I’d be calling the people in the funny farm to come and get me if that ever happened.

5.Is the belief in UFOs, aliens, physic powers, etc, growing because the belief in religion is dying?

I think it’s more that people have been accustomed to the idea of these things through so much sci-fi in movies and tv that they don’t seem quite so unreasonable.  I think religion is dying because it refuses to adapt to the changes in the world.  We do not live in ancient times anymore, and religion seems to want us to.  If you can’t change and adapt, you die.  It’s true of almost anything.

I have 130 followers.  Why does only one of you ever comment?  Am I doing something wrong?  Just curious.

Not in the water surfing, on-line surfing.  I’m never sure if on-line should be hyphenated or not, or if it’s one word.  Oh, well.

Anyway, here a couple of links of interesting reads.  They got me thinking.  I have a friend who I used to think was similar to me in our philosophy, political and otherwise.  Then, after years of listening to Dr. Laura, and watching talk show after talk show, and Fox News, my friend has become one of those people who think poor people are all ‘gaming the system’, people who weren’t born here should all go back where they came from, it’s great to lock people up in modern-day concentration camps with no representation, or charges, or any reason except someone thinks they could be a terrorist, possibly maybe.

You can be brainwashed.  It’s very subtle, and you probably don’t even realize it’s happening.  Especially if you never question what you read, see, hear, and never look for other points of view.  It’s a very complex world, and only hearing one side of any issue does not equip you to make rational, logical, intelligent decisions about any issue.  Here’s the links:

This one is funny. Block your parents from watching Fox News.

Fox News is dying of old age. My heart does not break over this.

I took this test:

Age Test

Here are my results. Little do they know.

And short.

Click on it: Thoughts on the Election

So far. It’s after 8pm, but I could still do more. I haz engerny. Is miracle.

Washed a t-shirt
Washed the kitchen waste bin
rearranged plates and glasses in cupboard
Weeded out mugs
Edited grocery list and cut out pics from grocery ad for homemaker
affixed glider to white tray table
put away three pieces of laundry I’d hand washed yesterday
Added items to dishwasher
tried to hang cups from extension rod, but it’s too short
looked for mug holder thingy, but ??????
Soaked cyan and magenta ink cartridges
hung strainers over sink
ordered shelf for cup/glass shelf
blocked off g’s hide spot between shelves/couch
lined a shelf with shelf paper

There were a couple more things, but I’ve forgotten.
There are a lot of individual steps to doing some of those, like lining the shelf. Take everything off shelf. Get measuring tape. Measure shelf. Find shelf-liner. Measure and cut shelf-liner. Put shelf-liner on shelf. Put mugs and glasses back on shelf. Return rest of liner and tape measure to proper places. That’s just one thing. There have been years where I could not do all those steps in the same day. And this is more than I would have been able to do in a month not that long ago. And I did it in between Facebook, Twitter, Tumblr, blogs, fan fiction, and checking the radar periodically to see if the thunderstorms heading our way were going to fade out before they got here, like they’ve been doing pretty much all summer. We had one two days ago with some really cool lightning, but it’s become a rarity. We used to have storm every Friday, only because it was sci-fi Friday and I was trying to watch things. I don’t unplug everything like I used to, so of course, no storms. :). There was a ligtning that looked like this, but without the green jog at the end. 🙂 Never seen anything like it before.

When Fascism comes to America, it will be draped in the flag and carrying a cross. Sinclair Lewis

I posted this on Tumbler, but you all need to see it. I can imagine how people felt in Germany when this was happening in their country. OMG, people. This is America!

There’s either been no questions, or not really very good ones, so it’s been awhile.

1.How old would you be if you didn’t know how old you are?
It depends. When I’m really ill, I feel 99, but generally, I’m an idiot ten-year old, or maybe 15-18.

2.Which is worse, failing or never trying?
Never trying. Duh!

3.If life is so short, why do we do so many things we don’t like and like so many things we don’t do?
Too soon old, too late smart? Have you heard that? The older I get, the more I realize how much time and energy I wasted doing things I didn’t want to do because I thought I should, or someone was pressuring me, or whatever. The liking things we don’t do, I don’t know. Because we think we shouldn’t, or we think we don’t have time. We forget that there is just one life. That’s all we get. Do it now. You might not get another opportunity.

4.When it’s all said and done, will you have said more than you’ve done?
Probably. I’m all talk and no walk, or something. Besides, I’m ill, there’s a lot I just can’t do.

5.What is the one thing you’d most like to change about the world?
I wish people would develop working brains. The level of stupidity, evidenced by all the Trump supporters, just boggles the mind. It’s frightening, how easily led people are. This is how the Nazis got into power, this is how the Taliban did their thing, and yet people cannot see it.
The weather. It is going to be 95 today, at least, and it’s an orange air day, which is not good. This is the third orange air day this year. Air pollution. Not a good thing.

The kitchen lights quit working Monday night.  Yay.  Called Maintenance Tuesday morning, he was next door and came right over.  Fixed sink sprayer, since I had already bought the parts, and while that was happening I mentioned the broken freezer AGAIN, and showed him the temp gauge which read 20 degrees.  Freezer should be 0 degrees.  Anyway, he had to go to Home Depot to get lights, came back, said landlord told him to order a frig.  Just like that.  After over a year of asking.  Fixed kitchen lights, completely replaced bathroom fixture with an actual bulb one, instead of the florescent one that was there.  Happy, happy, me.  Then new frig came yesterday morning.  Wow.  Everything fixed, just like that.

I had a very busy Tuesday. It was homemaker day, so getting ready for and dealing with that, maintenance, and helping out and writing down measurements, and moving things for easier access, etc. then cleaned out the frig, putting everything in containers for easy transference, containers back in frig to keep things cold. and more.  Busiest day I’ve had in ages, and first time in ages I’ve been well enough to be that busy and do that many things.

Put the freezer stuff in the box my vacuum cleaner came in.  It’s a good box, so I’ve kept it around.  Freezer stuff was just flours, ice cream maker, nuts and grains, not actual ‘needs to be kept frozen’ food, because broken freezer, duh.  Anyway, when they open freezer to check before taking frig out, vacuum cleaner box.  Big laughs all around.  It was pretty  funny.  Two delivery guys and Peter the Maintenance Guy all cracking up.

So things actually work now.  It’s a good thing.  Peter said he will speak to landlord AGAIN about changing central air filters, too. I explained that I am worried the units on the roof, which are very old, could overheat and catch on fire because of having to work hard because filters are blocked. Landlord has insurance, but the rest of us would be screwed. And I think they are finally finished with the road work, which has been going on between 10pm and 7am for a few weeks.  It was very quiet road work last night, and I think they finished early, so hoping they’re done.  It was annoying, bright lights, building shaking, lots of noise, but they did it that way so the downtown businesses would not take another hit.  They were hit hard when we had the fire a couple of years ago what with the street being closed for awhile and water damage and frost damage.  It was very cold and snowy when we had the fire.  So I can take a bit of inconvenience.

It was kind of amazing.  10pm, all is well, 11 pm, big huge deep hole in the intersection.  7 am, no hole.  That night, 10pm all is well, 11pm, big huge deep hole in the intersection.  7am, no hole.  This went on nearly every single night.  Hole, no hole, hole, no hole.  Amazing that they could even do that, and what a lot of work, when it would have been so much easier to just dig the hole once, do all the pipe replacements, refill and repave.  I personally think it was a good thing to do it this way, because downtown is important.  We need downtown business to keep our town going well.  It was pretty bleak for awhile, and then we got a fancy restaurant from Boston, and then more new businesses, including more nice restaurants, art shops, all sorts of things, and downtown is thriving again.  It’s a good thing. It’s a very user-friendly, safe, pleasant town to live in.  Some of the Patriots live here, too, although I’ve never seen any of them walking down the street.  🙂

Before the fire, it’s all very pretty:

After the fire, and didn’t those seasons change quickly?:

I fixed the toilet. Toilet innards, specifically the flap thingy, used to be metal. Now they are some weird form of plastic that breaks down over time. Crumbles almost. So you have to replace them every few years. Easily done, however, and I did it. Then I replaced my shower head, with a bit of help from my friend Tess and my new homemaker Katy, who I am so keeping. She helped me turn the mattress on my futon last week. It is heavy and impossible for one not-that-strong person to do. After Katy left, Tess and I made Tiramisu. I think we used too much coffee, since we were too unenthused to go out and buy some Kahlua, but I think it will be okay. I made it once a long time ago, and it came out fantastic. I used tubbed cream cheese instead of mascarpone, because mascarpone is expensive, people. Very.

Turned on the a/c for the second time this summer. A low-use record, I think. It’s been a really great summer. Plus I bought a dehumidifier, which is amazing. I used it the other day. June 29th. This happened:

In one hour, it lowered the humidity ten degrees, according to my little humidity gauge. Going to go see how much water it removed. 3 1/2 cups of water. In one hour. Amazing.

So worth the money. Since they won’t change the filters for the central air/heating system, I worry that it could overheat and cause a fire. Landlord does not seem to care. I think they just want me out. Won’t fix my frig either, and it’s been well over a year. Freezer now stays at about 20 degrees, so can’t even buy ice cream. Thanks, landlord. I’m a good tenant. Don’t make trouble or complain or call maintenance all the time. Just do your part. Yeah, they want me out, so they can up the rent.

Oh, looks like it’s going to rain. We need more rain. It’s been pretty dry. And it was a good day.

I am distressed, depressed, and just plain appalled at Britain. This insanity could happen here. It matters if you vote, and whether any of us like it or not, it matters that you vote for Hillary, because any other vote, or not voting at all, is just guaranteeing Trump getting in. Are we really so ignorant and xenophobic and homophobic and racist that we would choose a ignorant, narcissistic buffoon to lead our country? Unfortunately, I’m being to think we really, really are. OMG

If you’re not concerned about what is happening in the world today, well, you are going to richly deserve what happens while you stand by and do nothing.

I just am stunned.

Haven’t done this in a while.

1. Do you like smiling? I really do
2. Would you call yourself a happy or solemn individual? Happy
3. What was that last thing that made you smile or laugh? Kitten video on Tumblr
4. Do you believe that laughter is the best medicine? It’s not as good as pain meds that actually work, but it’s a close second.
5. Are you smiling now? It’s weird, but as soon as I read this question, yes, I am smiling. Why it makes me smile, I don’t know.

Been great weather. Really great. Best summer ever, so far. Went out Wednesday to Whole Foods, had fun, massive pain yesterday, with leftover pain today, but better. If I could conquer pain, I could conquer anything. I am missing my Traci mightily. See texted that she may come over this afternoon, but we’ll see how that goes. I’ve said, it is very hard to go back to your old work as anyone other than someone who worked there. The transition from work place to friend’s house is a difficult one. I’ve had other homemakers who promised to stay friends, but there’s a psychological thing there that is really hard to get past. But anyway. Hoping to Get Things Done today. Called maintenance, too, because the sink sprayer has been busted for well over a year, and the bathroom light finally gave up limping on and just gave it up altogether. As far as fixing the frig so the freezer actually works (It maintains a steady 15 degrees F right now.) and changing the central air filters, well, I seriously doubt that’s ever going to happen. Please somebody, find me a decent, affordable place to live, and come and move me. Please?

Except for one hot and sticky day, it has been very, very cool. Heavy shirt, sweater, heavier blanket cool. The wind has been from the North or Northwest nearly every day, and blowing quite strongly a lot of those days. This is like summer heaven. Hot tea and blankets in June. I am loving it. I love my Wunderground weather app, btw.

Been doing pretty well. Went out yesterday and sat on my fav bench. Took some pictures of the clouds, which were very interesting, I thought. Then today, I went across to the park where they were having Strawberry Festival Day. One booth had strawberries. Oh, well. But I talked to some interesting people, bought some hot sauce (yum), saw some cute one and two-month old chickens, and got a couple of informational flyers. Short outing, but fun.

Mare’s tails predict storms. Seems they were pretty accurate, since it is raining right now. I thought it was interesting that they were in different directions, and that one is curved, like it changed it’s mind mid trip or something. Sky was really pretty. They finished the road work that has been going on all night every night for the past three nights. I think they did not want to work last night, so finished up yesterday morning. All done by the time I went out. They were trying to not impact the downtown businesses too much, also. Said businesses took a major hit during and after the fire we had a couple years ago. See posts from January 2014.

Back home trying to create an Amazon order. What is with the stupid Pantry Box? I just want to order some Tom’s of Maine Toothpaste, not create a Pantry Box. What the heck? Emailed them about it, so will see what they have to say.

Ordered from the new Chinese Restaurant yesterday. Why can’t you get decent Chinese food in New England? It’s all the same bland, sweet and sticky sauce, boring food. I read a lot of fan fiction by Brits, and they get all sorts of Chinese food I’ve never even heard of, let alone seen on a menu. It is very different from the Chinese food we got in Colorado, too. No sweet, sticky, pink sauce and breaded chicken fingers there, but real sweet and sour chicken, with veg and sweet/tangy NOT PINK sauce. Why can’t I get that here? I can make it myself, but cooking and I have some issues.

New homemaker seems to be working out, although she did not come yesterday. Apparently she had an appointment in Worcester (might have mentioned it) and her work kept calling to tell me she was going to be late, then it seemed she wouldn’t arrive til 5pm or so, so I just said to forget it. And why call her work and have them call me? Seems very inefficient. I would rather speak directly to her and figure things out without an intermediary. But it’s a new agency, and there will be adjustments. I can deal.

Here are the pictures I took yesterday. It is cool, gray, and raining this afternoon. Probably rained out the end of the Strawberry Festival. Glad I went this morning.

Having a really good day. Especially after yesterday. Oh, crap. Luscious smell of meat on the grill just came wafting through my window. So not fair. Anyway, emailed DD yesterday to see if she could some down sometime and lend a hand. Emailed right back, “On my way”. Oh, I am so keeping her. She did what needed doing, and we even rearranged the living room a tiny bit to make it more convenient for me. Late yesterday, my caseworker called to say she found an agency, and they called today to set up days and times which are excellent for me, it turns out. New person starts Friday. Meanwhile, today, I am messing about on laptop, and trying to read some things on here, but keep jumping up to tweak something here or something there. Move a lamp, clean out Gertrude’s toy box, here, there, everywhere like a butterfly flitting about. Have to sit down in between each thing, but it’s been awhile since flitting was even on, and I am really enjoying it. Yesterday-crap day with anger and feeling abandoned, today-great day with Getting Things Done. It’s all good, people. It’s all good.

At all. Just found out that the agency that sends me a homemaker has stopped carrying me as a client, since Traci left. Never mentioned it when we were discussing the new person’s days and hours. Never hinted that there wasn’t going to be a new person. Apparently, my caseworker from the overseeing agency was supposed to call and tell me this last week, but my caseworker is, well, no one called if that tells you anything. Meanwhile, I have trash to go out, I need groceries, etc. Well, that’s just my tough luck, I guess. Called my caseworker, but of course only got voicemail. I indicated that I am not happy, but I doubt that counts for anything. They say a measure of a society is how well it treats it’s neediest members. Ours is sadly lacking, and generally treats the poor, the ill, the least fortunate, as people who need to be punished for not being rich, or something. I’m just really, really angry, and feel like I really don’t matter if you can’t even be bothered to mention to me something that is really very important to my being able to get by.