Doctor advised me to stop chemo for a few days to see what happens, as what was going on with me was not normal side effects. Skipped Wed dose, was much better by Thursday evening. Brain working better, thinking happened, even got some things done. Skipped Friday as well, even better yesterday. So skipping tomorrow’s dose, and I have blood drawn tomorrow to see what this has done to my numbers, and I guess doctor will advise me where to go from here. How bad is this without taking meds for it? Are meds necessary for future survival? What does all this mean? Questions, questions. This doctor, though, is one that takes the time to listen to them and to answer them.
Been getting out more now that DD is living closer. Went to dinner a few nights ago at the really expensive but really good place just down the street from me. Can walk there with the Rollator. They have sidewalk dining, so I was okay. Turns out the town was having one of it’s summer concerts that same night, right across the street in the park. So dinner, acting silly, music. It was a very good night.
Today I got to visit my friend’s new puppy. She is so teeny and cute. Just like Gertrude was when she first moved in. Then we got a shake at the DQ, and I hadn’t eaten today, so got an order of fries, which was small, but also quite tasty. Don’t usually get anything but ice cream from the DQ, so was surprised at the good fries. Tired, but a fun day. Cute puppy is so freaking cute. Kept trying to eat my shoelaces. That’s all. 🙂
I think I fixed it. It was sticking on pages,not letting me go forward or back, then it froze on the ‘swipe’ screen, so was useless. I whacked it with my fingernails, punched the buttons, on and off’d it, restarted it. Several times. Had already tried all of these a couple of days ago and nothing. Finally, it unstuck it’s little self and is now working. So far. Whew! Discovered I can read my text files (I have a lot of fan fiction saved) on KOBO, but you can’t do anything but read and delete. I have several categories on my Kindle: Dump, Keep, Books to keep, etc., and can move things around. But reading is the main thing, and now I know I have a backup besides just reading everything on the laptop. So reasonably happy Jean is reasonably happy.
In other news, I am feeling really, really awful. All sorts of pain and just laying on the couch like a log because moving just isn’t on, having trouble thinking and concentrating. Not sure these are side effects of the ET or the drug, or just another fun thing my body has decided to torture me with. Have been getting very frustrated with things. Things I can’t do that I need/want to do, important calls I’ve had to leave messages and they never get back to me, homemakers who vacuum half the living room unless I point out there is more floor there, dearie, and who come early, come late, don’t come at all, and never notify me of any of this. So yesterday this one came late. I was already PO’d about the phone calls, feeling like trucks, many trucks, have run over me, and she is well over an hour late. ‘You’re late, says I.’ No, I am supposed to be here at 2:30. ‘No, you are supposed to be here at 1pm, like every other Friday.’ NO, that was just once because I had a cancellation.’ No, you are meant to be here at 1 and I have something else to do now.’ Well sign my phone for the visit. ‘No. Not doing that.’ Closed door. Oooo, so rude, Jean. For shame. But I just had had enough.Does she think I have no memory of all the other Fridays where she came at 1pm? If she ever comes back, I will apologize, but it is still really annoying. It’s like I am just here and they show up or not whenever they feel like it. IDEK. Over and done. /rant/
Bought the darn thing just over 13 months ago, and it has bit the dust. My Kindle Keyboard lasted over 12 years. Really, Amazon. Very, very, very unhappy.
Van Gogh is from DecalGirl.comI only bought it because it has side buttons. I do hate touch screens.
Turns out it was a mistake at the lab. Could they not have double-checked before sending out the alert? Meanwhile, everyone is buying up bottled water and freaking out over having to boil water to wash dishes in. Sheesh!
So I guess this means this disastrous destruction of Twitter, can be blamed on Twitter. Think about it. Real time posts of what is actually happening in any given crises, by the people who are actually there. Information that is not diluted by the biased media. A incredibly valuable resource for all of us, destroyed in the name of ‘Oh, my god, we are going to get so much money!’
Bloodwork shows numbers a a bit lower, so that’s good. No real side effects, just tired, tired, tired. Of course, I am always tired, tired, tired because of the other things my body has messed up with. And now, when I am supposed to be being super-cautious, and drinking lots of water, and blah, blah, blah, a tooth is crumbling so I need a dentist, and we are now under a ‘boil your water, even to wash dishes in’ situation. Fun times, people. Fun times. Think of that city that has had contaminated water for years now. Flint, Michigan. Had to look it up. . From our town’s website:
1 Minute
Boil water for at least 1 minute
Use only boiled or disinfected water for bathing and food prep.
Water for drinking: There are two simple methods you can use to treat drinking water for microbiological contaminants (bacteria). Both methods are effective against bacteria in water.
Boiling: Bring the water to a rolling boil for at least 1 minute. Laboratory data show this is adequate to make the water safe for drinking. You can also boil water in a microwave oven using a microwave-safe container, but it is advisable to include a glass rod or wooden or plastic stir stick in the container to prevent the formation of superheated water (water heated above its boiling point, without the formation of steam). The water should then be cooled and poured into a clean container or refrigerated until you are ready to use it.
Disinfecting: Use disinfectant tablets obtained from a wilderness store or pharmacy. In an emergency, you can use liquid chlorine bleach such as Clorox™ or Purex™ at a dose of 8 drops (1/8 teaspoon) of bleach to each gallon of water. (Careful measurement with a clean dropper or other accurate device is required when using liquid bleach.) Let stand for at least 30 minutes before use. Read the label to see that the bleach has 5-6% chlorine.
Washing dishes: You may use a dishwasher if it has a sanitizing cycle. If it does not have a sanitizing cycle, or you are not sure if it does, you may hand wash dishes and utensils by following these steps:
Wash the dishes as you normally would.
As a final step, immerse the dishes for at least one minute in lukewarm water to which a teaspoon of bleach per gallon of water has been added.
Allow the dishes to completely air dry.
You may also use boiled and cooled water or bottled water.
Bathing and showering: Sponge-bathe young children. Do not bathe them in a bathtub where they might ingest the water. Adults or older children should take care not to swallow water when showering.
Brushing your teeth: Use only disinfected or boiled water for brushing your teeth.
Ice: Use only disinfected or boiled water to make ice cubes. Freezing does not kill bacteria or other microorganisms.
Washing food: Use only disinfected or boiled water to wash fruits and vegetables or to rinse rice or other grains.
Hand washing: Wash your hands with soap and boiled water, or soap and bottled water. If you only have tap water to use, it is best to use an alcohol-based hand sanitizer after washing your hands. If neither is possible and your hands have been exposed to germs (such as after using the bathroom), washing with warm tap water and soap and thoroughly drying your hands is much better than not washing them at all. In these instances, try to keep your hands away from your mouth and use a hand sanitizer as soon as possible after you’re done.
Cooking: Bring water to a rolling boil for 1 minute before adding food.
Infant formula: Use only prepared canned baby formula that is not condensed and does not need added water. Do not use powdered formulas prepared with contaminated water.
Houseplants and gardens: You can use untreated water for watering household plants and gardens. However, do not use untreated water on food plants such as tomatoes or berries.
Pets: The same precautions to protect humans apply to pets. Do not expose aquatic organisms (e.g., fish) to water containing elevated bacteria levels. If you need to refresh the organism’s water, use appropriately boiled or bottled water.
from The Guardian: ” Federal appeals court rules against Biden student debt relief program”
Remember this when you vote. The only help they are willing to approve is the help the Republicans are giving their fellow rich white men.
PROOFAnd then there’s this.. Walz approves free breakfasts and lunches for kids. It does matter who you vote for.
Unless, of course, you are one of those who think other people’s children starving is just fine so long as yours are fed.
I have now had three doses of the chemo, and no side effects. So yay. Have to have blood work done tomorrow to see what effect, if any, it is having. Hope it’s doing well so I don’t have to up the dose. No side effects is a really good thing, since I am the person who always seems to get them, even if I don’t know what they are in advance.
This was 2021.
It has been a pretty icky summer, but here in New England, we do get days of respite. Had the windows open for a few days earlier this week, and open again today. Humidity and dew point are both decreasing. Yesterday, and a few nights ago, the humidity was 100%, and no, it wasn’t raining. The dew point was in the upper 70’s, too. Ewwww.
Time for lunch. Stay safe, wear your mask, and vote them out. Please.
Had an hour long convo with someone at the Leukemia and Lymphoma Society and am amazed at the amount of support they offer. Long discussion about the diagnosis and the medication, and it turns out doctor prescribed an incredibly low dose to start, and she explained the other options and why this is the best choice, so I am feeling a thousand per cent better. She was fun and funny, too, always a plus in my book. Just FYI, all this. Update: oops. Think I need to remove that image. Sorry.
I just did. Here’s a headline: Wickedpedia: Why is it called a CharlieCard? Does anyone remember the Kingston Trio? I am just sitting here giggling to myself. Don’t live in Boston, did not know it is called that, but pretty sure I know the reason. Good start to the morning.
Also: This is not Gertrude.
But could be her twin, down to eye color, and the white spot on her chest. Cats are weird.
It is not going well, people. Not well at all. Well, some of it is going well, but in general I just cannot catch a break. New diagnosis. Genetic mutation in bone marrow causing high platelet counts, which apparently is a bad thing, and the recommended solution is oral chemo. OMG. Seriously? There are less serious choices, like phlebotomy, which works the same as donating blood, but my hematologist insists on the chemo. Was meant to start it Monday, but the saga goes like this: Could not get anyone to pick it up for me, called Walgreen’s Monday to see if they do delivery. YES! Same day delivery, but we won’t be delivering it til Tuesday. (Same day means something different in the pharmacy world, apparently) so waited all day Tuesday, finally called at 6pm to be told it was delivered. Well not to me, it wasn’t. Person checked and the DoorDash (DoorDash, the worst delivery service I have ever encountered) delivered it to the outer lobby. You know the one I have mentioned before that is open to the street. A toxic drug left in an accessible to any passerby lobby. I mean I am supposed to wear disposable gloves just to touch the bottle. Oy! They have no control over the DoorDash drivers, I was told. After some discussion, I was so not pleased that I just said ‘screw it’ and hung up. Fortunately, it was still in the lobby yesterday when my homemaker came.
Do not want to take this, but after much discussion with doctor, friends, and family, I am going to start Monday, only because youngest wants to be here when I take it just in case. Doctor wanted me to start it on Monday and not the weekend so he would be readily available if something goes wrong. That’s not ominous at all, is it? So anyway.
AND it is still freakishly humid and just will not let up. Humidity has been in the 90% range, but I think it is lower today. Do not think I would survive without the a/c, and I am wondering if my much increased pain levels are somehow related to the humidity, because even a/c cannot completely keep it not humid in here.
Please, for all our sakes, vote, and VOTE BLUE. Watched The House on Bird Street last night, and as I watching the Nazis do their thing, I kept thinking that this could happen to us, to you, to me, to our families, if we let the Republicans take over. They have already told us that it is what they are planning to do once they have all the power. Please vote, and vote blue, so they do not succeed. Not voting works the same as voting for them, if you weren’t aware, because fewer votes for the Dems means the Republicans get in.
Youngest is moving nearby, at least temporarily, and my declutter person is coming this afternoon, so good stuff still happens. Stay safe, people.
Kamala Harris is an LGBTQ ally, and here are a couple of things from The Advocate:
‘Elon Musk’s trans daughter Vivian Wilson is speaking out after Musk spewed transphobic things about her on a recent show. In posts on Threads, she wrote that the billionaire was “desperate for attention and validation from an army of degenerate red-pilled incels and pick-mes who are quick to give it to him.” 👏🏽
🏛️ Michigan has done away with so-called “gay and trans panic” defenses. Democratic Gov. Gretchen Whitmer signed a bill this week that prohibits using the “sexual orientation or gender identity of a victim as a defense to a crime.” ‘
Is this who you want to have power over you and your loved ones?
PLEASE VOTE BLUE, people. PLEASE. The other side will be out in hoards to vote, and we have to do the same or we are just saying, go ahead, turn this country into a NAZI-style dictatorship and take away all our rights and freedom. This is the result of not voting. Please vote BLUE. Please. It DOES matter that you vote. Seriously, it does.
On the home front, new homemaker is working out okay. Finally got someone who does what needs doing that I cannot do. I am having sleeping issues again, why? Why, why, why? IDEK, but it is very frustrating. I want to be awake during daylight hours please, Mother Nature. Or whoever is in charge of that kind of thing. Declutter person will be back next week, so we can finish up where we left off. Not much to go, it seems. Got another new coffee maker. Does not grind the coffee, but has a timer you can set to have it make coffee so it’s ready an hour after I get up cause I have to wait that long after taking my meds, and it makes nice hot coffee. Something positive. Of course, I set it for 10am, and did not get up til noon, because awake most of the night. Oh, well.
cute, isn’t it?
Asked on NextDoor if anyone does tinkering anymore. You know, fix your toaster, your coffee maker, your blender. There used to be people that did these things. Apparently they no longer exist, as the only reply I got was to take it back to the store. NOT helpful, people. I am all done with PT and OT, as well. Going to miss that. It was fun and weirdly, I am better while at the same time, I am worse. Not easy to explain, but true.
That’s it for now. Homemaker will be here any minute. Stay hopeful, people, and vote. Please vote BLUE.
and so humid. Dew Point has been in the 70’s for several days. I am so lucky to have central air. And fans. And an air cleaner. Which all are running so I don’t have to keep the a/c setting below 74.
Been really struggling with pain and exhaustion. PT and OT are helping, I can feel a difference already, but the recovery time just goes on and on and on. I hope that’s what it is, anyway. Have resorted to taking double dose of Celebrex along with 2 extra strength tylenol in order to be able to even walk without having to hang on the everything in reach. And last Tuesday, I was so fine I could walk up and down the hall raising my knees with every step and no cane. That was part of the PT, along with balancing with my eyes closed, which did not go well at all, but was pretty funny.
Getting more and more worried about what is going on, and the willfully ignorant who may well destroy this country by voting in the orange disgusting excuse for a human being who has that very thing as his goal. What is wrong with people? It is getting very scary. Vote BLUE, please. Biden is old, but he does not have dementia, and he has a young black woman as backup, whereas the other guy has more like him as backup. Please think it through before you vote red, or don’t vote at all, which amounts to voting red in the end. The consequences will be devastating for all of us who are not rich old white men.
Backing BidenBacking the orange disgusting excuse for a human being. Has drunk the Kool-Aid since these were said.
Oi. Did my morning exercises, and pain, pain, pain now. I was thinking about the whole exercise thing. When you do not have Fibromyalgia, when you exercise, you can expect to get stronger and fitter over time. You shouldn’t have pain if you don’t overdo, either. With fibro, your body does not work like that. Even doing small amounts causes a lot of pain, sometimes not until a couple of days later, either. And the ‘stronger and fitter’ does not seem to happen. At least not for me. I keep forgetting about ‘recovery days’, which are always needed after doing pretty much anything beyond reading on the couch. LOL I kind of figure that if I do something that I know is going to cause pain, well, I’m going to have pain anyway, so might as well do something fun anyway. But I am at the point where the pain never stops. Never stops. Just sitting here, messing about on the laptop, my arms and shoulders and hands hurt. I have taken the Aleve. Yesterday I took Tylenol. I had been taking Celebrex and Tylenol. Nothing seems to work anymore. All pain, all the time. Pain causes fatigue, which is already a fibro thing anyway, but coping with pain, walking, moving carefully, takes energy that isn’t really there in the first place. So always, always exhausted. Exhausted and in pain. All day every day. Fun times, people. Fun times.
On the bright side, my coffee maker is still working, and making almost no work at all coffee with freshly ground beans is just the best way to start off the day. I am using oatmilk, too, not dairy, because of the whole bird flu things and dairy is really not recommended when you have fibro anyway, as far as I know. I love cheese, Mother Nature. Come on. But oatmilk is surprisingly really darn good. In coffee, as a glass of cold, which I do not normally have cause I really don’t like milk that much. Although that Organic Valley milk is good enough to drink by the glass. Why is it different? No idea, but I like it. Still doing the avoidance thing, though.
Remember when life was good. In the respect that you went to the store and bought your food and cooked your food and enjoyed your dinner? Then it was OMG FAT. NOOOOO So everything went fat free, which only meant more sugar, which is deadly. Seriously, Duck Duck Go it. Then it was one thing after another on why we should not be eating this food or not the way we always ate it. Now it’s no runny yolks, no milk, no this no that. Food is not what it was anyway. It is all processed and messed with and does anyone ever just buy meat as it came from the animal, veg as they came from the garden, fruit as it came from the trees or bushes? Grocery ads used to be the meat section, the fresh produce section, dairy, and then canned and packaged things like flour and sugar, etc. Look now. Everything is processed, and virtually everything is really junk food. Why are young people getting cancer? Why are so many children plagued with food allergies? Why are people getting sicker? Well maybe it’s because we have not evolved for our bodies to process chemicals and food so processed that it bears little or no resemblance to what it was meant to be. I don’t know. Apparently pain makes me grouchy. 🙂
Again, this post was written by someone who has a frig stocked with ready meals, because cooking is beyond me right now. Heat and eat. Or eat it cold. I just had Cedar’s chickpea salad, which is so good. Oh, Cedar’s got its start about a five minute walk from where I lived in NH way back when. A teeny little store front where the guy would give you free samples to try, because Lebanese food? What even is that? But so good. Here’s an article I found about it.
And here’s where it started. There were two store fronts in that little building, so guess how small Cedar’s was. Now look at them. They are everywhere, and deservedly so.
This is right over the line from Haverhill, Mass. You could tell when you crossed the line by the condition of the road. Nicely plowed/barely scraped. Nicely paved/pot hole city. Not going to say which was which. 🙂 Top circle is where I lived. Bottom is the place Cedar’s got it’s start. About a five minute walk, if that. Neat. Of course, a lot of it is very different from when I lived there, more buildings and crap. Blogging is fun. LOL
Decided to give it another try and it is working again. Yay!! LOL I’m really pleased, cause I love it, and they don’t make it anymore. This one is refurbished and I got it at Ocean State Job Lot. 🙂 It’s big and heavy, but it makes good hot coffee, up to 16 ounces at a time.
OT person and I figured out that doing OT and/or PT every day with fibro is a really, really bad idea. Also nixed the orange gunk for the hands because it made my right hand hurt quite badly for days after, so doing other exercises instead.
Had fun today. Friends came over and we played Big Kahuna, which always involves laughing hysterically, because it just makes up its own words. Homemaker came, too, and we did some laughing with him as well. So not a bad day, even though it is hot and icky outside. Me and G and the A/C. It’s a song I wrong. Or not.
I do it some times. I get up to here with being really, really frightened about the whole ‘Republicans have lost their minds and become evil country-destroying bastards who want women to carry dead babies’, and angry about the exact same thing, and the gross stupidity and willful ignorance of so many of my fellow humans.
Then there is the ‘it doesn’t matter what I do, what I eat, how I sleep, if I exercise or not; I never, never, never get better’. So F it, I just stop caring. Right now I just had dinner. Contents of Just Crack an Egg (So overpriced) fried in a bit of butter and two eggs scrambled in and an eng muff, and now I am eating an entire pack of Hydrox (the actually edible precursor of those sickeningly sweet Oreos) and having a glass of applejack. So. Screw it, people. I fear we are doomed by stupidity, and I worry for my children and their children. Because I don’t know how to help. I don’t know how to fix it. I am scared. Truly scared like I have never been in my entire life. Even back in the 60’s when the hippies were flocking to Boulder because it was the only place that was going to survive the end of the world. Oops. (Boulder is quite nice, btw. Or it used to be.) Anyway. Save us, please. Vote Blue.
Mark Ruffalo: “”Project 2025 is not a game, it’s white Christian nationalism. It is the Sharia Law of the ‘Christian’ crazy people who aren’t Christian at all but want to control every aspect of your life through their narrow and exclusionary interpretation of Christ’s egalitarian, inclusive, and kindly teachings.”
“Don’t be fooled by Project 2025’s extremist and perverse ideology,Trump is bringing it to all our lives: abortion, LGBTQIA+ rights, freedom of expression, freedom of religion, freedom of education, and equality between the races and genders—GONE. Forced birth and forced religion. Trump’s American Taliban.”
Have to admit it is getting pretty scary. A decrepit old man with dementia will have the power to kill, torture, jail anyone he doesn’t like. Any one he doesn’t like. They don’t even need to have done something specific. This is what we’ve done, by voting for the man who gave you permission to hate and persecute and denigrate without consequences, or by not voting at all, which meant his opponent did not get enough votes to defeat him. You are about to understand consequences. Seriously. Enjoy.
So, I bought this neato Cuisinart one-cup coffee maker. It is so easy and I can set it up the night before and I only have to dump the filter and rinse the holder to clean up. Easy hot coffee. It also does grind and brew. So I finally got some whole beans and pressed ‘grind and brew’ and it ground the coffee into the filter and stopped. Dead. Tried it again bypassing the grind feature and still dead. I have had this thing less than two weeks, and finally tossed the box, because it works, right? Wrong. Frustration. Why is everything made today just shitty? Oh, capitalism. Profit is the only thing that matters. Quality costs more, meaning less profit. I need to go back to bed. Sheesh!
I really should not check instagram and Tumblr in the morning. It ruins the entire day when It becomes very obvious that while we will be sitting around on the fourth of July, barbecuing our hot dogs and burgers, our country is being destroyed by the deliberately engineered ignorance of a huge segment of the population. People who were not taught how to think, how to reason, how to ask questions, but to just blindly believe what they are told and obey unquestioningly. Under-funding schools and under-paying teachers leads to under-educated citizens who have no ability to think for themselves and who it seems are now confusing the Constitution with the Bible. Separation of church and state is getting lost on purpose. If that is the kind of country you want to live in, ruled by fake-Christian dictators, forcing you to live by their idea of what is acceptable (meaning profitable for them), then go ahead and vote Red or even better, don’t vote at all. When you wake up in that country, think about what you have done, but it will be too late.
strangely peculiar 