Pain, 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

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

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

After 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?

chili rellenos.  I love chili rellenos.

The reason I ask is this:

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

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?

“I can tell you that the end of a life is the sum of the love that was lived in it, that whatever you think you have sworn, being here at the end of Jem’s life is not what is important. It was being here for every other moment.”
—Cassandra Clare, Clockwork Princess

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

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.

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.