Tag Archives: writing

NOSTALGIA

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Had a bit of a wobbly last evening. Going through things to get ready to move, was doing books. Practically first one in the pile was The Boston Globe Cookbook for Brides, a book I bought back in the late 60’s, when we first moved to New England. Wow. Back when I was a person, when I had a family, when I had a real life. Made me really sad for a bit, that the life that was is gone and will never return. There are a few other really old books that I had way back then, a couple I bought when I was a teenager in Colorado. Then there was the box of old journals. Should not have read any of them. A couple in particular were really bad, I had not realized how depressed I had been for so many years after my husband left. I always think I am fine and doing well, but apparently I delude myself. Was kind of upsetting, too, to read about things I had forgotten. Treatment by ‘friends’, and even by my children. I remember the treatment by my husband, but had blacked out the other things.

My husband used to say how ‘understanding’ I was, but what that really means is how gullible I was, and how easy it was to convince me that everything was my fault. ‘Understanding’ is double speak for letting yourself be treated badly because if you make waves about it, people will leave you or stop being your ‘friend’ or whatever. I will say, growing up in survival mode really does a number on your mental well-being.

A lot of it, too, was how hard being on the spectrum, which I had never known I was until a few years ago, makes life. Always being confused, and never understanding what you are doing wrong and all the other things that come with Asperger’s. I get it now. I can look back and see how it explains this or that, but living through it at the time without having any idea what was going on, that was really hard and painful and confusing.

I was really appalled to read about how one of my ‘best friends’ has treated me over the years. I always tell myself that I have my own issues with people, so be tolerant of others. But it still hurts. I am a very ‘in the moment’ person. I think the Aspergers contributes to that. On good days, I forget there are bad days, and vice versa. I don’t hold grudges normally, because I tend to forget things that happened, or block them out. But I have always had some underlying anger about how I have been treated. And then, I say I probably treat them as badly in my own way. Excuses. Explanations. Whatever. Life on the spectrum is not easy, and I have always wished I could be like ‘normal’ people, even if I didn’t really understand what that meant. Yes, I am a basket case. LOL But thing are better now, and I think I have a pretty good life. So.

GOOD EVENING

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Where have I been? Recovering, resting, vegging, going out shopping with DD, trying so hard not to be consumed by anger and frustration and avoiding as much bad news as I can. It’s hard, but I have to try. I have saved a bunch of things from instagram and elsewhere to share, but not sure if I should make my blog that negative.

Had a lovely nor’easter yesterday. Wind did blow, rain did bang against the windows. One of my favorite weather events. Even better when it’s snow, but it is almost June you know.

Today I did some research and realized I am taking my meds all wrong, so redid my pill holder and hopeful things will work better now. Also reset my alarms to reflect the life I live, instead of the one I wish I was living. Instead of breakfast at 9, it is now at noon. (Nine am is like the middle of my night.) Dinner at 9pm. I usually am awake until 4 or 5 am at the earliest, some days till 8 or 9 am. So breakfast at 9 is almost never on the cards. I have spent the better part of my life trying to go to bed and get up like ‘normal’ people, but it never works. I can maintain maybe a week, than it gradually regresses back to where I am awake almost all night. Doctor says I have delayed sleep disorder, for which there seems to be no fix. So learn to live with it. You would not believe how many things I have ‘learned to live with’. Example. If I felt as bad as I do every day back before I was gifted all these chronic, debilitating painful illnesses, I would be in the ER constantly. But I have learned to live with them. Sort of.

Right now I am having a ciabatta roll (I have discovered I absolutely love ciabatta bread) with hummus for dinner. And a nice Zinfandel DD brought for me to try. I have lucked out in the kid lottery. My two are absolutely fantastic and amazing. The one who lives here in New England is taking super care of me, driving me where I need to go, taking me shopping, putting the groceries away, rearranging everything to make it easier for me to manage. I think I will keep her. 🙂 The one who lives in New Mexico has a fantastic job where she is loved and appreciated and doing good for others. I am so proud of them both. Wish their dad was still here to see how well they turned out. He would be proud, too. We did good, I think.

Miss G has been way more active lately. I think she was bored to tears, poor baby, but recently more people have been in and out, and she seems to be quite liking that. Here she is recently. Cute kitty is cute. Enjoy your lives, people. You only get one, make it count.

HELLO

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Still here. Still recovering, but slowly getting better. Can shower by myself, put my coat on by myself, do some minor tidying and cleaning, thinking about possibly cooking something. It has been interesting and kind of fun having PT and OT and nurses coming in and out. MIss G has really come out of herself. Weird cat. Sometimes she will be all over a person, and the next time they come she will hide the entire time. I am about done with all of them, though, so it’s back to me and the homemaker once a week. It was good while it lasted. Still having a lot of pain in my arms, but am very slowly decreasing the prednisone dose. Was hoping it was the fix I needed for that particular issue, but apparently not. Everything I’ve read about PMR flares say prednisone is the fix, but not for me. Oh, well.

Have been getting out a lot more than normal, too. DD takes me for walks with the rollator (short walks as I still get tired quickly) and shopping and all. Yesterday we went to TJMaxx. Have not been to TJMaxx in years. I used to love it, and Pier One, too. Quirky things. We went because my bowl has disappeared. I have had glass bowl for years, that I use for four-bean salad, making party mix in the zapper, and it just is not there now. ????? So been trying to find a replacement. I may have, from Walmart. Being delivered today. Anyway, got a set at TJMaxx, turns out it is NOT zapper safe, so returned it and just cruised the aisles. Got the cutest cup ever, and of course, a couple of things for Miss G, because I always get her something.

It’s about twice the size a my regular mug, and is embossed. I just fell in love with it.
She cannot inhale her food with this one. It’s cute, too.
Water. I had a small bowl on top of another bowl. One piece is better, but so easy to spill this one.
And the cutest little mini daffodil. How could I resist?

Another gray day. It’s almost like February in New Hampshire. Gray day every day. Not quite that bad, yesterday was a beautiful sunny day, and there have been others, but too many gray days kind of takes it out of me. House is kind of a mess again. Cannot seem to focus enough to clear off the coffee table of all the pieces of paper and stuff that I accumulate. The declutter process kind of came to an end with the health things going on, and my person has moved on to other things. Oh, got some Almond Butter Lindt Lindor Truffles. Yum. When I lived in NH, there was a Lindt factory up in Exeter that a friend and I used to go to a couple of times a year to stock up. Truffles in the freezer? It’s a good thing. LOL

Okay, I can’t even begin to get into the whole ‘my country has become a fascist oligarchy and we are so screwed’ thing, and I try not to let myself dwell on it to much, but the other day my daughter said she is worried because I say things in public that I probably shouldn’t and she is worried I might be killed for it. Can you imagine? In the United States of America. What have you done, people? What have you done? “The bright day is done, and we are for the dark.” Shakespeare.

MEDICATION

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I have had my fair share of medications over the years, most of which have just caused worse problems with their side effects than the issue I was taking them for. There’s a word for that, and I of course cannot think of it right now. I think it starts with the letter i. I mention this because I just came across a book and here’s the brief review: “Bad Pharma exposes the systemic flaws in the pharmaceutical industry, revealing how drug testing is often flawed, research is hidden, doctor education is influenced by pharma, and regulators approve ineffective drugs while concealing side effects. He argues that this complex problem, often hidden from public view, demands greater transparency and regulation to protect patients.”

And an article I found:

https://www.oncnursingnews.com/view/the-treatment-should-not-be-worse-than-the-disease

I may have mentioned that I have a recent genetic mutation that causes my blood to make too many platelets, blood cancer. The oral chemo was devastating, and even though I stopped it on my doctor’s advice months ago, I still have not completely recovered from it. I had a colonoscopy (NEVER doing that again. The stuff you have to drink is the most repulsive thing I have ever been made aware of. OMG.) while I was in the hospital in February.

Anyway, I do not have colon cancer, but I have a weird polyp that is benign, and was ten years ago when I had the last colonoscopy. Back then, they wanted to do some sort of surgery that removes half your innards (hemicolectomy) as a precautionary measure because’ I wouldn’t want to be 80 and have a large cancerous mass in me’, said the surgeon. Well I refused, and now I am 80 and the polyp is still there in the same condition it was ten years ago. I would have been living with the consequences of the surgery for the past ten years for absolutely no reason except surgeons want to cut you. (Sorry, surgeons, but I have had some not great experiences with a few of you.) Never just blindly do what doctors, especially surgeons, want you to subject yourself to. Get several other opinions if possible. I just went with my gut back then. It seems to me that they want to make you miserable now in order to prevent the, in my case less than 5% chance of being miserable sometime in the future. The surgeon I saw this time completely agreed with the ‘do nothing because there is no real problem here’ take I have on it. I like him. Between some not great doctors and the many medications they want you to take, I am sort of over American medicine. I am lucky now that every one of my doctors is really great, caring, pays attention to what I have to say, and discusses things with me, not just tells me what to do. They are out there, you just have to keep trying til you find them, although with health insurance as it is in the country, you are lucky to have a doctor at all, I think. So that’s my rant for today. Recovery is so very slow, and I expected to be much better by now, but I guess losing a lot of blood, especially when you are 80 years old, is really hard on the bod. I am getting better, but it is slow, slow, slow. Anyway.