This Is Amazing

Not coffee, the vid that’s linked down below.

coffeecoffeecoffee

The music on the vid is great, too.  This is what we are destroying, humans.  It’s their planet, too.

Before the link, a note on the health front. Saw the surgeon yesterday, one more knee checkup in six months, and I’m done.  I’ve done remarkabley well, it seems.  We talked about the torn rotator cuff, too, and I asked what would happen if I opted not to have surgery.  Not a problem, he says, I’ll give you a cortisone shot and you can go to physical therapy and we’ll see how you do.  I’ve never dealt with a surgeon who didn’t just want to cut.  I am so pleased I found this guy.  He’s very nice and friendly and explains the risks and his percentage of bad outcomes, which according to him is very, very low, and I believe him based on my own experience with him.  All those years of crap doctors and I’ve finally worn the lottery, health-carely speaking.  Great dentist, great Primary, great surgeon, great PA at the rheumatologist’s. The Rheumy gets a good, which is still better than what things have been like before.  Okay, I’m done, here’s the vid:

Coral

The Horror, The Horror

sometimes-im-like

Oh, god, just shoot me now.

I was reading something about Denzel Washington and followed a link that said he spoke out against something to do with Obama.  So I read it, and it was just him talking about being religious, and I’m looking for Obama even being mentioned, when I discovered, to my complete horror, that I was on a Drumpf news site, which I did not even know existed.  In a small text bit, it said that Obama shows a strong anti-Christian bias (sorry, big fat lie), which is when I noticed it was the Drumpf page.  Morning, well, afternoon now, brain fog is not a good thing.

I really think we are screwed, people.  To think that the opportunity to have the first female President is likely to be lost to a racist, mysogynistic, homophobic, zenophobic, moronic orange gas-bag is too terrible to contemplate, and yet it seems to be a distinct possibility.

I saw a man being interviewed by some comedy program, and he thinks Hillary has AIDS because Bill has AIDS from fooling around with Magic Johnson, and someone was also upset that Obama was off vacationing or something during 9-11 instead of doing his job as President.  The unfathomable amount of ignorance exhibited by some of these people is just mind-blowing.  Is our education system really this bad?  How can people be this uninformed and just plain stupid?

I truly have lost hope, although I have’t given up urging people to vote, and to vote for Hillary, because any other vote will ensure Trump gets in.  Vote-splitting has given us Bush, among other horrors. Republicans just vote for their party’s  candidate, while we more ‘enlightened’ liberals tend to vote for people like Ralph Nader, which would be fine, except then the majority vote goes to the Republican and we screw ourselves royally.  Maybe we’re not so smart, either.  I need to go put a blanket over my head now.

Here’s how to register, in case you haven’t yet:

Register to Vote

Here’s the last date to register in your state:

Last Date To Register by State

Please vote.  It matters that you  vote.  It matters who you vote for.  It matters.  Just to try for a bit of humor, because otherwise I may have to cry, if Trump gets in, it will be ‘the end of the world as we know it-REM’ and if you saw Torchwood, you’ll know that ‘the 21st century is when everything changes’ and Trump as President will not be a good change for any of us. Please vote Hillary.  Even if you hate her, consider the alternative.  Please.

 

Ramblings

Reading a gardening blog with pictures of a tattooed person holding a vegetable, and it occurred to me why I would never get a tattoo.  I get bored really quickly.  When I can, I am always moving the furniture around, reorganizing the cupboards, the drawers, whatever.  My pictures here on the laptop, which completely screws up my blog posts, but I never remember that til after I’ve done it.  So I’d look at that tattoo for awhile, then I’d start to think something like, “You know, I bet I’d like a ???  better than this ???”.  Or, “Why did I pick that?  I don’t even like it.  This would look so much better.  Or maybe it would look better on my ??? rather than here on my ???.  Maybe a different color…”  So never getting a tattoo on purpose.

On the illness side of things, been having a rather major meltdown for the past several days, along with a fuzzy brain which is badly affecting my memory.  Not sure why I’m having either.  Well, I kind of did figure out the meltdown part.  I am having a very hard time adjusting to feeling like crap and being exhausted, because the brief ‘normal’ period was so grand and I want it back.  I’m also having a really hard time adjusting to not having my Traci here twice a week.  It’s like losing my best friend, one I could always count on to show up, and who always made me laugh.  We had some really great discussions, too.  So it occurred to me, before, when I was having a really bad period, I could count on Traci to show up and do what needed doing without question or even direction.  I am still working things out with the new new homemaker, and I guess I was feeling like it was all on me and I just wasn’t physically able and panic, panic, panic.  And the stupid cat keeps throwing up everywhere for no known reason and there’s cleanup every single morning and sometimes during the day as well.  Very frustrating, and it all was just overwhelming me.

Now for the bad part.  I involved my poor daughter in the meltdown and made her feel bad and now I feel like a total shit.  I did not move back to Colorado to take care of my mom.  I did not go visit her.  I couldn’t.  I wanted to, but I truly was not capable enough.  This does not make me a bad person. I did the best I could at the time.  Did not stop me from FEELING like a bad person, and that is what I’ve done to my daughter.  You know, the one who came down every single day when I had the knee surgery, rushed around on the early home-coming day to purchase all the aids I would need.  Held my hand in the hospital, because no one ever holds my hand anymore.  That daughter.  So not feeling like the best mother in the world, but am hoping she realizes that she is doing the best she can, and that is enough, and that I love her to bits.  Also, rats.  I suck.

you_suck_sad

How Do I Survive?

brokenThere is some bad stuff on Tumblr today. More black people being murdered by the police, more corporate wrong-doing going unpunished, a lot of really awful shit. How do I survive? It wears me down, all the unbelievably horrible stuff that is going on every day in my country. You know, the one I thought was completely different that it really is. How do you not get beaten down and just give up? How do you stop caring? I like Tumblr. I have a lot of fun and interesting reads on Tumblr. I learn a lot. I can’t just stick my head in the sand and pretend none of the bad stuff is happening. But how do I keep it from breaking me irrevocably? How?

Wow.

Just wow.

OR: Things I’ve Learned From Eighteen Years of Having A Chronic, Debilitating Illness

You cannot rely on the Medical Community.  You cannot rely on doctors.  Doctors only know what the drug reps tell them. Ask your pharmacist, instead.  It’s their business to KNOW about meds. 

>An Experiment

Doctors read studies and go from there, even when their own experience with patients tells them differently.  Just from my experience with Rheumatology and Prednisone, I can confidently say that the patient input is not needed, not wanted, not heard.  It’s my body, this is what happens when you insist I do that, but just go ahead and ignore me.  It’s fine. 

>Fixes

Also, I’m female, which makes the odds of being ignored jump exponentially.  Also choose a female practitoner, if possible.  This is just unconscionable.  How many people have suffered needlessly because of this one particular study?  You have to fight for yourself, and when the doctor is wrong or doesn’t listen, you need to be a pushy broad, because that’s the only thing that will give you a chance of being heard.

you will listen

Not any more, I won’t.

Here’s the article:

Bad Science and Chronic Fatigue Syndrome

Yes

From Living in the Autoimmune Disease World on Facebook. My brain actually kicks in around 5pm, regardless of when I get up, and the pain gets slightly better about four hours after I take lovely unhelpful Tylenol.  I miss ibuprofen.  Badly.  But I can’t take it with the anti-inflammartory, and the anti-inflammatory does seem to help. So yay.

everyday

OMG

cupcake-1-280x219In a burst of self-indulgence, because I am having a crap pain day, I got Hostess cupcakes.  Those cute little chocolate things with the white (now brown, unlike the picture for some reason) swirl on top.  OMG, I say again. I have not had a Hostess cupcake for years.  What have they done to food?   Is it even food anymore?  Apparently not.  I googled, and they are made of flour, water, salt, and a lot of stuff no human being ever cooks with in a kitchen.  Ew, Hostess.  Ew.  Those above are the only things on the list that I have ever had in my kitchen.  There is no sugar, no eggs, even the baking powder has other stuff in it.  No vanilla.  I didn’t see chocolate, either. Chocolate liquor, but no chocolate.  Oh, heck.  Here’s the list, but I’d like to see a list from the ones they sold in the 50’s, or even the 60’s maybe.  There is a whole generation or two of humans who do not know what real food tastes like.  Do you cook with these items?  I don’t. Appalled R Us.

Sugar, Wheat Flour Enriched ( Flour, Ferrous Sulfate [ Iron ], Vitamin B [ Niacin Vitamin B3, Thiamine Mononitrate Vitamin B1 { Thiamin Vitamin B1 }, Riboflavin Vitamin B2 { Riboflavin Vitamin B2 }, Folic Acid Vitamin B9 ]), Water, Vegetables, and/or, Animal Shortening, Contains One Or More Of The Following( Soybeans Partially Hydrogenated, Cottonseed, Or, Canola Oil, Beef Fat ), Corn Syrup, Corn Syrup High Fructose, Corn Syrup, , Contains 22% or less, Whey, Corn Starch Modified, Leavening ( Baking Soda, Sodium Acid, Sodium Acid Pyrophosphate, Monocalcium Phosphate, Sodium Phosphate ), Salt, Corn Syrup Solids, Calcium Carbonate, Corn Starch, Calcium Sulphate, Dextrose, Soy Lecithin, Polysorbate 60, Mono and Diglycerides, Cellulose Gum, Calcium Caseinate, Wheat Gluten, Agar, Gelatin, Sodium Stearoyl Lactylate, Caramel Color, Chocolate Liquor, Locust Bean Gum, Potassium Sorbate, and, Sorbic Acid, To Retain Freshness, Flavors Natural & Artificial

Brownies

brownies

 

I made frosted brownies once.  Oh, yum.  I am trying to work up the oomph to make brownies from scratch.  I don’t know why.  No frosting, though.  Do you know how many steps are involved in making brownies from scratch?  Get the flour cannister, the sugar cannister, find space on the unbelievably cluttered 2 foot square counter, find the pan, get the butter, grease the pan, remember to turn on the oven after checking that there is nothing I’ve shoved in there to get it out of my sight, find the cocoa, the walnuts, the vanilla.   Get out a saucepan and melt the butter with some cocoa, get out the measuring stuff, measure out the dry stuff, don’t forget the eggs stupid, dump everything together, beat the hell out of it, get it into the pan, remember to put the pan in the oven, remember to set the timer so you don’t forget to take the pan back out of the oven, although you may need a note to remind you what the timer is for.  Did not mention the taking a five minute break to sit down every five minutes.  Wind up too exhausted to get up and cut the brownies when they’re cool enough, so no brownies today anyway.  Maybe I don’t want brownies after all.    And none of this gets to the cleanup after part, either. As an aside, I used to put the Tupperware container of cat food in the oven, because Simon could open it.  _I_ had trouble opening it, but the cat, not so much. Anyway, I was heating the oven when I heard it raining.  Upstairs overflowed the tub once and it rained  in here, so I checked, but no.  Took me a bit to realize.  The container had melted enough to have a hole, and the cat food was raining out.  One of my funner memories.  I still laugh at that. It was good.

Waiting For The Rain

tumblr_ocswi7GPUv1two5sjo1_1280

that we’re supposed to get from Hermine.  Thought they mispelled Hermione at first, but no.  Who thinks up these names, anyway. Not my picture, found it somewhere.

Cutting back the Prednisone to 7 1/2 mgs today.  Was going to go 1 mg at a time, but realized I don’t have any one mgs to make 9 or 8 or 7 or 6, so bah!  Hoping it goes better that it usually does.  Seeing my primary care this week, and am going to discuss the whole pain med and for crying out loud, fix me, people, thing with her.  We’ll see how that goes.  LOL

Cooled right down once September hit.  Was in the 60’s night before last, and the 50’s last night.  Oh joy oh joy oh joy.  Not hot and sticky is always cause for celebration.

Here’s a vid I took on the 22nd, the post where I said it was breezy.  Forgot out it.  Breezy is good.

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

importD3

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.