Angi

Come to the Green Wood.

Current Mood: awestruck

Who wants to see Eddie Izzard next weekend?

Wow, yeah, sleepy was right. I conked out in my recliner just after making my last post, and only woke 3.5 hours later because I had to pee. *yawwwwn* Not going to stay awake for long, either... bedtime soon.

Oy. I made it through the day at Pride just fine -- getting soaked in the fountain helped with the heat -- though my hips were hurting by the time we were done. Just a little dizziness, no sudden uber-sleepiness... until just now, when I'm home and resting alone, and now suddenly, zonk, dizzy, drowsy, a little high-ish.

We didn't try to march the whole thing, just watched from near the end of the route, then marched the last couple blocks with the zoo unit, with Mev, Lyra, and Alicia. Then spent some time at the festival.

Then came home to snuggle just a bit with Cern & Aine, and say goodbye (sniff) to Aine for now... this is her last night with Cern for this visit; she goes back to VA tomorrow. I'll be glad to have my Cern back :) but oh, I do wish she was nearby now, and we could see her more often. A piece of my heart goes with her.

But the bittersweet partings are worth it. I feel so rich in family, this week.

Wow!

Read the first Less Frequently Asked Question. It's near the bottom.

The rest of the site is worthwhile, too, of course. The most recent video is best.

I don't think I ever did post about Stormy's birthday, which was a couple weeks ago, on the first. She had a good one, anyway. :)

( A couple ideas that didn't pan out: )

What did happen:

( Friday evening, she got her ears pierced. )

( Then she and I went for Chinese food, and went to see Susan's Diverse Harmony choir concert, which was pretty impressive. )( I learned that I'm a grandma! )

( Saturday, we met up with Alicia, Eli, Mev, & Lyra at the Woodland Park Zoo. )

( Sunday, we had a 'drop-in' party at home. )

( Her main present from Cern and me was a complete set of Buffy DVD's. )

( At the end of the day, Cern arrived in time to tuck her in. )

He also said to increase my vitamin D from 3x the RDI to 10-20x.
Wow, that's a lot. But easy enough to do with the drops.

First visit to the pain doc today.
Of course he had to poke all my tender spots and make me flare.
Low pain day up to that point. Not so much with the "low" since then.

Starting on Lyrica and Cymbalta.
Low dose of the Lyrica only at night, work up to 3x/day.
Go back in 1.5 weeks, discuss the meds, increase dose then.

Stay on the anti-inflammatory.
Continuing to use the Percocet 2-3x/wk is okay.

Should see a PT about trying a TENS unit.
It won't be much use for a lot of my pain, but may be good for my back.

Worried about weight gain on the Lyrica, so I bought candy while waiting for the 'scrips, 'cuz of course that'll help, right. Heh.

He also mentioned something for fatigue, an energy med?
To be discussed at some later time.
Starting enough new meds at once as it is.

UCTD: Undifferentiated Connective Tissue Disease.
With probable secondary fibromyalgia.

This may be an early stage of a specific connective tissue disease (Lupus, Rheumatoid Arthritis, etc.), or, it looks more likely, may remain undifferentiated.

It's such a relief to finally have a diagnosis that FITS, and makes sense!

It's also good to know that the prognosis is better with UCTD than with specific CTD's, and that even if it does progress to a specific CTD, prognosis is better when it starts out undifferentiated.

Feels like I should celebrate.

http://notalwaysright.com/owning-a-pet-fail/804

[Edit: Warning: "not funny" doesn't cover it. Seriously disturbing clueless animal abuse.]

Yesterday, I started having burning pain in the sides of my neck and across my neck/shoulder area on both sides. The areas were hot to the touch (Cern confirmed), and maybe a wee bit pink but not red.

WTF, body???

I should print this one out and post it at work.

Friday: Went to the women's party at the Spot. Just hung around, sat and chatted, for a couple hours. Was home by 11.

Saturday: Slept in, then went up to Bellingham with Cern to see my brother, SI(almost)L, and week-and-a-half old neice. Got going sometime after 11 a.m. ... met up with them around 2 at the farmer's market, where they sell coffee that my SIL roasts... walked a couple blocks down the street for dinner, then followed them home and hung out there for a couple hours. Needed some percocet around dinnertime, hips and chest both bad. Got headed for home around 8, and I slept most of the drive home.

Sunday: Woke with a hella sharp pain in my chest; had a hard time getting up at all. Drove to dim sum, had a good time there, food and company helped. Drove home and immediately passed out... for almost 4 solid hours. During which time I got up to pee multiple times and fell right back into bed, never waking quite all the way up, and dreamed about driving the truck while being so sleepy I *could not* open my eyes. Spent the rest of the day groggy-ish vegging and getting nothing done, unable to really drag myself out of my chair. (Wound up awake late, although I've only been at most half awake all day, so maybe that really only counts as being awake half late?)

...Which, BTW, I always insist on reading as "ADAM Naismith", and then briefly wonder who that is, duh.


The meme:

1. Think of the first word that comes to mind when you think of me.

2. Go to Google Images and search for that word.

3. Reply to this post with one of the pictures on the first page of results (don't tell me the word).

4. Do this in your own LJ, if you wish.

I'm caught up on LJ now. Can't say I read everything very *thoroughly*, but I at least glanced it all over. :)

What took me away for a few days was Portal. Great addictive game, although the part between the last "testing" level and the actual endgame was a bit long and repetitive. And it was Major Frustrating playing it on a laptop. The controls were sometimes difficult, and of course laptop graphics are nowhere near optimized for games, so it kept slowing waaaaaay doooooown, and I'd have to reboot every few game-minutes to get it working again. But I *had* to finish it, to get to the song!

Cern heard the song at last yesterday evening, and said, "I get my girlfriend back now?" :D Of course he does his own share of getting lost in games and such, so he couldn't really give me a hard time.

Now, if we can just stop Babylon 5 from eating up *all* our one-on-one time every night... :)


In other news, my latest lab results mostly look fairly normal, for once. Platelets in the low normal range, C-Reactive protein (one indicator of inflammation) normal for a change, red cells only just barely below the low end of normal (hematocrit over 35, low normal is 36... I don't think my hematocrit has *ever* been this high before). ANA panel all negative. And the red cell antibody test also came back negative, so the anemia is not autoimmune.

ESR (Sed Rate, another indicator of inflammation) is still elevated. And CO2 is low -- I'm not sure what that indicates.

I don't know whether I'm doing something right, or whether it's all random. Possibly my diet changes have made a difference (cutting way back on the deep fried foods, no french fries or chicken strips any more -- I wasn't eating those a *lot*, maybe once or twice a week, but I know cutting them out entirely has helped my gut, and it's supposed to be good for inflammation too).


I started on the Diflunisal (NSAID) last night. Info said it might cause drowsiness, but I think instead it kept me awake half the night. I do notice a little bit of floaty feeling, but nowhere near like the Percocet. So far my pain level's been relatively low since Sunday now... here's hoping this stuff keeps it from going back up too much.


In other other news, work is going to let me telecommute 2 days per week, starting next week. Contingent on my bringing my performance up. If I can't bring my performance up, the next option is to go on a reduced schedule under the FMLA, for reduced pay. I was hoping to be able to telecommute 3-4 days per week, but 2 will definitely help.

This time, only 45 minutes or so.

Of being strapped down on my back on a platform, with a board strapped to my chest, and then slid into a tube that was so tight I couldn't bring my arms down from over my head. Though I could, with effort, bring a hand down far enough to scratch my nose. Which was a blessing.

With headphones on playing classical music, rather too quietly to quite muffle all the loud, startling noises. And some submissive breath control (being required to hold my breath until allowed to breathe again, several times). While weird warm tingling sensations attacked my body in various places.

I'm glad I'm not generally claustrophobic -- in fact, I like curling up in small spaces; the "coffin table" at the Spot makes me feel quite secure -- but I did have some moments of near panic anyway.

With my eyes open, I could see that the end of the tube above my head was open. Barely, with my peripheral vision. It was better to keep my eyes closed, most of the time.

I was thankful that it was a low pain day, even though that meant they probably couldn't see as much of whatever inflammation is there. My back and neck were killing me by the end, though. I was SO glad when I could finally get up and stretch... and *crackle*!

I think I'll get results when I go back to my rhemy guy in a couple weeks.

...they is so bankrupt.

I'll catch up eventually. Meanwhile, don't expect that I've seen anything you've posted in the past several days.

Most weeks, we've been alternating houses (when I don't have Stormy), but Cern's at my place all this week, since he's got some work training going on 3 miles from here. This feels good.

We're working our way through Babylon 5, about a third of the way through season 4 now. It's so much fun to see that again with someone who hasn't seen it before.

Monday: Went to work. Got in a walk around the block at lunch. Also some grocery shopping after work.

Tuesday: Worked from home, didn't get a walk but did get a little housework done. Went to the new rheumy doc in the afternoon. Went to a Japanese steakhouse (the kind where they grill at the table) -- Cern had never been to one -- to celebrate the semiversary of our first kiss, which was actually Wednesday.

Wednesday: Went to work. Got in a walk around the block at lunch. Also some grocery shopping after work. But was dizzy, a little queasy, and drowsy at work... weirdly feeling like I'd taken percocet or something, even though I hadn't.

Today: Working from home again, because I'm still dizzy/queasy/drowsy, and don't feel quite okay to drive, especially not all the way to work and back. It's weird, definitely feels more like I've taken something than like a flu or anything, but I haven't taken anything. I'll try to get in a walk this afternoon, but I also have some things in the house I definitely want to work on.

On the agenda for tonight: I get Stormy from her school at 3. Cern is cooking tonight, penne pasta with a tomato-ey sauce, yum!, and I have corn on the cob to do up, too. And later, bedtime reading from the Blue Bear book.


In other news, this maked me cry. *sniff*

I saw a second rheumatologist, Dr. Mohai, today. Very different experience. Dr. Sheets pretty much said "it's fibromyalgia, go away". Dr. Mohai says "this does NOT sound like fibromyalgia, it sounds like something inflammatory". To which I can only say... "duh!" :)

I'm having my chest wall -- and I think my neck and upper back at the same time -- imaged next week. And starting on an anti-inflammatory (I forget which one, he called it in, pharmacy will have it tomorrow). And more of the same labs. And then back next month for follow-up.