Did not realize how long it’s been since my last post. I’ve had posts in mind, but doing something else, and by the time that was done, I was just too tired to think each time. Better. Finally, finally better. Ten mg pred is the key, along with sleeping well, which is definitely an off again/on again thing. I do wonder, since I keep being told that prednisone has no effect on fibromyalgia, if I have been misdiagnosed. Try to get doctors to start from scratch. HA!
August fifteenth, after two weeks on ten and two on nine, was my first day on eight mg. It was the best day I’ve had since before I went into prednisone withdrawal, what was it, seven years ago. August sixteenth, second day on eight mg, back in the pits with the pain and the fatigue and the whole ball of crap. The next Monday, called doctor and practically begged to stay on ten. Yes. Woo Hoo. But like always, once I cut down and get worse, I need more that I started with to feel as good. So not as good as I was, but still a lot better. Sticking with ten as long as they’ll let me. Stupid, stupid doctors. ‘Well, you could get this that or the other down the line.’ Yeah, but, right now I’d like to have a relatively decent quality of life and worry about the this that or the other if/when it happens. Sheesh!
So anyway, before all that, while I was still doing relatively well, I got to spend the weekend with my friends in Westport, MA. It was the perfect weekend, not only weather-wise, and believe me, the weather could not have been better. Cool and sunny and breezy and perfect. We sat on the deck and talked and J and I looked up snarky t-shirts on our phones to show each other while B was texting her family. At one point, I looked up from my phone, and there were the three of us on the deck, heads bent over our cell phones, just like you see in cartoons and such. We went to the farmer’s market, where I bought ground cherries. Never had them before and were they ever tasty. Went to the beach and just sat and vegged, went to the winery and had a couple glasses and some fries from the food truck. There is a really nice winery in Westport where you can sign up for tastings, or just sit outside and enjoy the beautiful surroundings. More chats on the deck, watched a couple movies, J cooked all my fav foods, and B made tacos one meal and quesadillas another. I was in heaven. I could seriously eat nothing but tacos and tiramisu with the occasional bowl of fish chowder, for the rest of my life. Tacos. Oh, yeah. 🙂
Went out a lot more than normal with my friend Tess, too. Lunches and shopping and we went to Westport ourselves to have lobster at our fav place down there. This is our new tradition. Year two. Would have visited my friends, but they were not home when I called.
Since that weekend of August ninth, I have been glued to the laptop. I’ve been thinking it’s because I had gotten used to being alone, and the weekend sort of woke me up to how not great that is, so I was trying to feel connected. Today I realized that the laptop is on a narrow hall table type thing in front of the windows, so I am about two feet from the outside, and that’s the draw. I am on the second floor, so I see tree tops, and also cars and lots of people out walking, which I never really noticed til I moved the laptop here awhile back. I just keep looking out every couple of minutes, so I think my brain is thinking I am back on that deck, just without the chatting. God, it was the best time I’ve had since I can’t even remember. Steak on the grill, eggs benedict, molasses pancakes, tacos, and best of all, just talking about any and everything. My friend J and I have the same sense of humor and the same love of books and tools and gadgets and especially snark. His wife B has none of those. She sort of just gives us looks as we act like complete idiots. Wish I was still there. Really, I do.
But I am doing pretty well. My head is clearer so I can think about things like what I want to do, or what I need to do, or whatever. That fibro brain fog really gets in the way, so I’m glad it’s floated on by, for now anyway. Hope this lasts, but never think ahead, because with this illness, things can change in a flash..
So. There. Been cleaning up my laptop, hoping to get it to work better. It’s helping a bit, but it’s old and getting pretty clunky. I was amazed at how messed up things were in the files. I am usually pretty good with organizing on here, but I think I must have had a lot of brain glitches or something. I would clear out a folder, but find a second folder in it that was a duplicate. Sometimes there would be a duplicate folder in the duplicate folder. What? How did those get there? I must have deleted a thousand gigabytes of crap. Maybe a zillion. Seems like a lot, anyway. But I like doing this kind of thing, and it mostly doesn’t hurt, like trying to organize things in the real world does. So happy Jean is happy and doing not too badly right now. Hope you all are doing great as well.
This post made me so happy.
And jealous…I miss the beach!
It was so nice. Tiny little beach not that far from their house. Tide was coming in, lovely breeze, a few kids playing nearby with moms watching. We just sat and vegged and oh,yeah. LOL Sorry.
I didn’t know they lived there.
You are SO “sorry, not sorry”. 😉 LOL
Where? Westport? It’s next to Fall River. Sorry, not sorry. LOL
Oooh all that food sounds delicious. I’m trying to make some business cards for the visitor cottage. Can’t quite get them the way I want. Sigh. Hoping my daughter might help. The last couple of weeks have been slow, but it is winter. Next week it’s busy again. Yay. Income! Anyway, got some window cleaning, grout fixing and other maintenance done. Keep well!
Business cards seem a good idea. Hope you get them the way you want. It’s hard to get things just so, I think.
Getting things done, i.e. maintenance. Probably not fun times, but worth it, right? It’s going well, I take it. IF it were even remotely possible, I would lovve to stay there myself, but alas. Never going to happen.