OW!

22146Pain, oh, pain, oh pain. I’m not sure why the Rheumatologist opted to NOT give me a cortisone shot, but I am paying the price.  Happy Jean is not happy today.  It’s worse at night, for some reason, and trying to sleep with really bad pain is an exercise in futility.  If I’d injured myself, I could look forward to it healing, but I have no idea what’s going on, and the xrays last time didn’t really show much.  I really feel like I cannot get a break.  One thing gets better, something else starts to hurt.  My life is just pain, all the time.  I can manage, usually, but god it would be so nice sometimes to have someone to look after me.  Or maybe just shoot me and get it over with.  Seriously, I’d seriously consider opting for that some days. Too much pain, especially this one which restricts movement of my arms, makes getting things done virtually impossible.  I can barely lift the kettle to pour water into my cup for tea.  I can barely manage to get water into the kettle in the first place. And the ways to get anywhere, like a doctor, are, well, let’s see.  To get to my doctor, it’s almost 20.00 one way in a taxi, the bus doesn’t go anywhere near there, and the dial-a-ride requires booking the morning of the day before, so no I need to see a doctor NOW, and they are notoriously unreliable, so that leaves my friend who drives me everywhere already, and how long can you take advantage of someone like that before they just get fed up with you?  I can’t provide anything she needs in return, so it’s a one-sided, I take and she gives situation.  I hate that.  I mean I can buy her lunch, but she can just as easily buy her own lunch.  She doesn’t NEED me to buy lunch, if that makes sense. The rheumatologist is in another town altogether, and the only way to get there is my friend or the dial-a-ride which only goes a couple times a month.  This is when you really need to be part of a family, so your spouse or partner or kid can do this stuff.  Living alone has its advantages, but not when you’re ill.  Okay, that’s it for today’s whine.  Sorry about that. I’m just really, really frustrated.

On a positive note, my new new homemaker (as opposed to my old new homemaker, who was a disaster) is fantastic, really nice, and we are already talking like we’ve known each other for years, about any and everything.  We share the same politcal views pretty much, too, and she’s knowledgable and you can just have a good conversation about things.  I miss real discussions about things that matter to me.  Not everyone wants to talk about politics and religion or whatever, and I sometimes forget that and then try to do a quick change of subject when I remember, and not everyone shares my views, so you kind of have to walk cautiously there.  So I’m hopeful that this will work out.  She does a good job of work, too, and has already offered to help me with ‘not really in the job description’ things, like Traci did.  Traci helped me put together my electric fireplace, which came in a flat pack.  She was always willing and volunteering, which was really nice.  And fun. She was fun.  I miss her a lot, a really lot.

My fireplace
02

No, that’s not my fireplace.  THIS is my fireplace

PaperCamera2016-08-18-15-41-15

I took this with the Paper Camera app.  Neat. See, feeling better already. It really helps just to write things down. Except OW!

 

 

 

Oh

happy dance catAfter a discussion with the rheumatologist’s nurse today, in which I pretty much said, “Yes, I am in fucking pain you twats.  DO something.”  the doctor has magnanimously decided to up my Prednisone to 10 mg for a week, then 7.5 for a week, then back to the 5 mg that made me a functioning human being again.  Hope it gets me back to where I was, but it seems to take longer every time they do this to me.  But this is the first time they’ve increased it beyond the five and then gone from there, so I am hopeful and excited at the thought of maybe being pain-free again.  I am ALWAYS in pain.  All day every day, and sometimes it wakes me up at night as well.  That brief respite was like being in heaven and I want it back, damn it.

My friend Tess and I went to Market Basket and I bought actual ‘yes, you can heat and eat and it’s real food’ food, unlike the drek you get in the regular grocery store, like frozen dinners that aren’t made of actual food.  I’m not sure what they use, but the whole ‘keeping the calorie count down’ craze means that real food can’t happen.   Anyway, I’m having pork pie for dinner.  I used to make pork pie, but haven’t had it in ages, and you can just buy it to heat up in the toaster oven.  How great is that?

And a brief aside, could somebody please come and make this for me?

chile rellenoschili rellenos.  I love chili rellenos.

The reason I ask is this:cooking

That’s all for today, dear readers.  Thanks for reading.  I know you’re out there.  My stats show it. 🙂

I Cannot Catch a Break

not a challenge

Why? So last Friday,my homemaker had a dentist appointment, which worked out well, because so did I. We both know, so all is well, right? Not. She didn’t mention it to her work, and neither did I, because I’ve always just worked things out with Traci before. Traci worked for a different agency, though. This one is more pro-active. Well, not really but I’ll explain. They called me Friday to see if I wanted a fill-in. I wasn’t home. I was at the dentist, lunch, Benny’s, getting an ice cream, going for a ride. A good day over all, thanks to my friend Tess, without whom I’d never get to go anywhere. So I’m not home. They call Bristol Elder, they call my friend Beth in Westport, my DD in Billerica, and then Bristol Elder called the cops. No one called my friend Tess, who is supposed to be my contact, but she was out with me so it wouldn’t have mattered if they did. Anyway, we get home a bit before five, and I am just listening to my messages, when the buzzer does a long buzz. Usually that’s actually for me, rather than someone just wanting in. That’s always a short buzz. So we buzz them in, open the door, and it’s a policeman. You Jean? Yep. You look all right to me. Speaks into his radio and leaves. Beth calls me, Kris calls me. Oh, the excitment. LOL

Today I called the agency to talk about this, which I thought was overkill on their part, but on the other hand it’s nice someone is looking out for you. I thought. In the course of the conversation, she happens to mention that my homemaker is not coming this week. (She didn’t come last week either, they sent a fill-in late in the day once who took out trash and did a quick shop), and nobody bothered to tell me, and they don’t have a fill-in. So pro-active in the freak-out department, not so much in the getting someone here to do the work I need them to do. Duh!

Called my caseworker, who is never actually in the office, left a message, but she never got back to me. Needing assistance is an uphill battle, and every agency keeps getting their funding cut by our lovely Republican shits, so there is less and less help in the first place.

On the other hand, and there is always another hand it seems, it is a gorgous, lovely, cool, breezy, excellent summer day. And it rained last night. What’s not tolove about New England on days like this?

The Friday Five, Again

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1. What’s your favorite way to stay cool in late summer?

COFFEE BOOKS AND CATS

2. Are you ready for autumn yet?

Been ready since the first hot and sticky day.

3. What do you have left to do before summer ends?

Stay cool.

4. Has it been a good summer for you?

Except for the meds fiasco,  yes, especially June, which was a glorious month, weather-wise.  If summer could be like that all the time, I would be a happy, happy woman.

5. Have you started Christmas shopping yet?

Good grief, no.  It’s summer.  Besides, I don’t really have anyone to shop for.

Mid-August

images2.duckduckgo.comBeen 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.images.duckduckgo.com

 

 

 

 

Things Today, So Far

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.

MaystonesiconSomething 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:Boehner

This is NOT a Republican:obamawrinklenose

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.

Well, Crap

wellcrapI 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. funny-pictures-cat-borked-himself

The Friday Five

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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.

Couple of Things Found Surfing Today

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.

What I’ve Done Today

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.FlameArtwork

The Friday Five

superstickiesGlitterGoldThere’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.GlitterGold
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.
Wredhousesnow

More Good Days

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:P1020171.JPG

After the fire, and didn’t those seasons change quickly?:9gScreenshot 2014-01-03 16.19.41the fire 4

 

 

 

 

 

A Good Day

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.