Angi

Heh. Well, it's happened to be 7 months between posts both this time and last time, anyway. Not by design. Every single time I come back here, I think I'm going to stick with it better, but I fall off.

I miss LJ, though. I'm sad that everybody has migrated over to FaceBook, leaving just a handful of people here and a few more who peek in from time to time. FaceBook seems to be more up to people's energy levels these days, though. A quick note on what you're doing right now, and you're done. Anything longer than about 3 sentences and you're pretty sure that hardly anyone will read it anyway.

Re my last post here -- if anybody was still interested -- I did find somewhere else to be, that Thursday. Got a friend to pick me up and spent the night at their house. It was a nice visit. Partner A was very worried that this meant I would never be okay with her new relationship. That wasn't the case at all. I just knew that I wouldn't be able to keep my mope to myself, if I'd stayed at home with them that night. They still have overnights every few weeks (and might have dates more often if we didn't live at opposite ends of the city). I had one play date with the woman, and it was fun, but it hasn't happened again.

That post was what, June? Since then... hmm... we went to Paradise Unbound, as usual. Aine came with for the entire week, for the first time. She'd been for one night before, but that doesn't really give you the same immersive experience. It was good. I met someone there, had a play date planned for the very last day, but it fell through and turned into a planned "whenever they're in town". Which hasn't happened to happen yet, but we are still in touch.

Cern and I went to Pacific Beach in October, as usual. And then I went back a month later with Aine, Aine's gf, gf's primary, my daughter Storm, and Storm's bf. And the dogs -- Aine's and mine. Turned out that without Cern's dog, Lily, along, Princeton was just fine off leash on the beach. He had a blast! Even found a Whippet to race and chase with. :)

Thanksgiving, we spent with friends and had Chinese and Indian take-out. Then we had our own turkey dinner on Friday... and then cooked a second turkey and put out Friday's leftovers for my family on Saturday. We had a houseful, including my dad, most of my siblings, and their and my partners and kids.

December 3rd I had all my teeth removed and replaced with 12 titanium pegs. The surgery was a bit of a nightmare for me -- I'd told them I didn't want Versed, didn't want to forget anything I was awake for. I didn't mean I wanted to be awake for the last 5 hours of the 11-hour surgery, but that's what happened. Cern wasn't quite prepared for how beat-up I looked afterward (see pics on Facebook -- I had a huge dark bruise on my jaw, 2 black eyes, and my face was very swollen). The pain wasn't too bad, though -- my usual pain meds covered it well enough, anyway.

What I wasn't quite prepared for (had not understood correctly) was that I would need to eat only soft foods for SIX MONTHS following the surgery (until the implant pegs completely bind to the bone and they replace the plastic teeth with a much nicer, much more compact, and stronger set of permanent arches). The rule is that I can't use these teeth for biting or chewing, I can only eat what I can mush with my tongue against the roof of my mouth. So since then I've been eating a lot of mashed potatoes, soups, applesauce, oatmeal, cream of wheat, refried beans... The most solid things I've found that I can eat are pasta, pancakes, and enchiladas (soaked well in sauce, they fall apart in my mouth). And fries, although those take a little work (break off any crispy ends for the dogs, mash/tear ends with fingers, soak ends in a dipping sauce...).

It's not so bad, really, and I'm losing weight, which is nice, although I wish it would go faster.

I saw my family again, including the ones who had missed our post-Thanksgiving, at my sister's pre-Xmas gathering. C&A didn't make that one, as it conflicted with her birthday weekend. I took Princeton so he wouldn't be alone all day, and he did fine leashed to me, being petted and cooed over, mostly by my neices.

Xmas day, we had Aine's gf over and watched our traditional Chitty Chitty Bang Bang. Quiet day. Of course, I put my orders in for gifts late, as usual, so most of those trickled in over the next week or two. Storm just finally got her last Xmas gift from me, yesterday!

NYE, we also stayed home. C&A tried some fancy drinks they found recipes for. NY morning, Cern drove Aine, Storm, and Storm's friend Bella up to do the polar bear swim. (Dunk, really. Nobody stays in the water long enough to actually swim.) Second year for Aine and Storm. They give out patches every year. I wish more events gave out patches like that. It would be fun to be able to show them all off on a jacket or something.

Well, that's the highlights from the past half-year or so. The past week I've been very very sick -- don't know whether I caught a flu or whether it's just more of my usual, but I've had tons of nausea, vomiting (even waking up to vomit at 3am), diarrhea, "wind", fatigue, and weakness on a level above and beyond even my usual. I've made it out of bed every day, but one day it was only a little while and I came back to bed and collapsed. I hope this is passing. I do feel a little better so far this morning.

Wow, I meant to keep up with my LJ, at least every week or two. Clearly I'm far from back up to speed yet.

Cern and I took our traditional weekend trip to celebrate both our birthdays. We went early in the month this time. Like last year, we brought our Greyhounds with us and went to Pacific Beach. Rented a nice little house that had a fence all the way around, so the dogs had someplace to run off-leash. (We can't let them run on the beach like the other dogs do -- as Greyhounds, they could seriously be in the next county if they just took off running, and we'd never catch them. We know some Greyhound owners do, but... Princeton has run off and followed other people right out the gate at the dog park before, so although he's a very smart boy, I don't really trust his judgment as far as staying close enough to not get lost, in a totally open area like that. And if I lost him, I'd be utterly heartbroken. We don't take the chance.)

It was a nice time, even though I both started and ended the weekend with horrendous tummy trouble that delayed both our arrival and our departure. And the DVD movie we decided to try from the collection in the house was a real dud (I'm not sure why we even finished it, other than that neither of us said quite strongly enough "this movie really sucks" until it was over, even though we were both thinking it). Oh, and then when we finally were ready to go, we had to wait for AAA, since the van wouldn't start -- turned out we needed a new battery. The old one got us home, but once we got it started, we didn't want to turn the car off again for at least half an hour or so, so we wound up not going to the beach again, and not making a couple other stops we'd been planning. But, you know, other than all that stuff...

Really, it was a nice weekend. We played Saint Petersburg (the board game) several times, and the one time we did get down to the beach, it was t-shirt weather; we hung out quite a while and had a picnic lunch sitting on a log watching the waves.

The following weekend, I was feeling good enough that I went to several of the Seattle Lesbian and Gay Film Festival films. All but one, I believe, were "shorts" collections, which are always favorites of mine. Cern saw the Saturday ones with me, and both Cern and Aine joined me for the "trans shorts" Sunday evening. Which was especially nice, since neither of them is at all into any of the film festival films, usually.

But since then... I've been pretty much wiped, all the time. Zzzzzzzzzzz. I get out to the living room from bed somewhere in the mid to late afternoon, most days (before that, I was usually getting there around noon, or not too long after)... And then I promptly fall back to sleep sitting on the couch, with a book or computer on my lap. If I'm lucky, I wake up enough to say hi to people when they get home from work.

But Cern and Aine have also been doing a lot of stuff without me -- playing video games together at the table (where I can't comfortably sit for long), doing stuff outside or downstairs or in the kitchen, going out places together -- so even when I'm awake here, I've been lonely a lot.

We just started watching Babylon 5 again -- the first time through for Aine. I'm so excited! She likes it already, and it's SO much fun to be reminded of all the mysteries and the stuff that will be coming up again. "What happened to the other telepath?" she wants to know. "I could tell you, but then... No, seriously. That's a great question, it has a great answer, and we will find out, eventually." :D

Oh -- meant to thank everybody who commented on my post about my Mom's death. Thanks. :)

(Mood:sad -- not actually related to anything in this post. Just feeling left out of Cern's and Aine's game. I don't even know whether I will/would like it, and I'm downloading a client so I can try it out, but they already started, so... *pout*.)

Mom's funeral was nice. Good to see everyone together, including some relatives and community people I hadn't seen in many years. Even if it was a sad event that brought us together. My brother and sister who did the eulogy both managed to make me cry.

Very thankful to Cern and Aine for both coming with me, even though it was a full Catholic Mass. I know that part wasn't very pleasant for Cern, especially.

My nephew had done a fantastic job putting together a slide show to play on the DVD player in the community (reception) hall, and everybody enjoyed it so much that every time it came to an end, a different person would come looking for whoever needed to hit the button to play it again. It started with some pics of my Mom as a child, and included pics of her with each of her kids and then grandkids, in order, as they were born, and grew up. You could see her appearance change through the years, and the whole family grow.

"Back at the house", later, my sisters and I spent some time going through my Mom's closet. I actually brought home a huge bag full of clothes. Surprised she had so much that fit me and that I actually liked!

Dad's been keeping busy taking care of all the paperwork of getting my Mom's name taken off financial things, donating the rest of her clothes, and finding the items Mom had designated as gifts for each of us. She had actually gone through each and every child, grandchild, and spouse-of-child (except that the last time she updated was apparently before I married Cern, so he and Aine were left out, but no biggie there) and she picked one or two items from her collections of art and jewelry and such that she thought they would like. I brought home a necklace with each of myself and my siblings represented as little silver figurines with birthstones in the bellies. My Dad also brought me a wizard figurine (which he later realized is actually for Stormy; he still has mine). And there is a pretty, large rainbow-colored glass vase on my Dad's mantel that will be mine whenever my Dad is done with it.

Hoping to go visit him (my Dad) again before much longer. Still thinking about him being all alone in the house now. He's in pretty good health, for his age (79), but I wonder whether we should get him (or urge him to get) one of those one-touch call-for-help button devices. Just in case. It's scary, thinking of something happening to him and him not being able to get help because he can't reach the phone or can't use it. Does anybody have any experience with those devices?

Current Location: The Googolplex, Burien, WA
Current Mood: sad
Current Music: Cern & Aine playing WOW

Oh yeah... Cern and I had our 4th wedding anniversary this past week, too. We haven't had a chance to celebrate it at all yet, though.

My life after (and shortly before) my Mom's death, that is. ( do people still click on lj cuts?Collapse )

Went to Paradise Unbound last week with Cern. Glad we're still doing that every year, even if I don't really wind up doing much/any play there, and it's incredibly draining, physically, even while that space also always incredibly healing.

( good to see peopleCollapse )

( praise for my newer power chairCollapse )

Possible TMI (but not rated above PG): ( how to survive mornings at campCollapse )That let me slip right back into bed and go back to sleep for a while longer, without having to get so awake that I would have a hard time going back to sleep, or miss more sleep than necessary on those mornings when the week's wear was really beginning to get to me and I really needed to lie in longer. Cern brought me breakfast on those mornings, too, which also helped a lot.

Anyway, we got home Sunday evening, and I'm now in recovery mode. Sore and achey and burny, so BURNY hot, everywhere, and so worn out and sleeeepy. But not as bad as I expected, actually. Not as bad as some recoveries from events have been. Still, taking it easy and not trying to do much at all this week, as I know by now that that's what I need after any event.

Sad that Aine couldn't make it this year at all. Next year, for sure.

Current Location: The Googolplex, Burien, WA
Current Mood: sore
Current Music: Artos Barking on the Deck

Been a while, hasn't it. Longer than I realized, even.

I'm still here. Home most of the time, but I make it out to social things now and then.

Aine and her son Peregrine moved in with us last December. It's nice to all be in one household now. Many things are better. More drivers. More cooks, meaning a lot more home-cooked meals. Less time alone for me.

Who is still out there? How are you?

I've been reading some LJ recently, trying to catch up on at least a few of you.  No idea whether or not I'll be able to actually keep up with it this time.  Wish I could promise, but I'd better not.  But I will try!

So...  who all is still out there?  Anybody still reading me?

In "this week in my life"...  Well, I've pretty much been asleep, so far *this* week.  ursuscelticus & I went to Conflikt
 last weekend, which was great!  

I took my power chair, and for the afternoons and evenings, we brought a nice thick (4"+) foam pad which is half of a pair we use under our air mattress when camping, and a pillow, and I alternated between sitting in chair, sitting upright on the cushion, and lots of lying down, sometimes dozing a bit, while listening.  It worked out very well for me.  I was outside the circle and unable to *see* much, but I could *hear*, and that's all I needed.  :)

I was afraid I'd get funny looks for it, but all the reactions that were visible to me were smiles and positive (and even envious) comments, which I was glad for.  There's no way I'd have been able to stay so late into the evenings without it. 

I did get questions about what I did to my arm, since I was not only in the power chair, but my left arm was in a sling a lot of the time (making me look, I'm sure, pretty pitiful).  The answer is that I seem to have some tendonitis or something similar going on in my shoulder.  It started a couple weeks ago when I was at the tail end of a course of antibiotics for a kidney infection, and this particular antibiotic listed tendon damage, even rupture, as a side effect (!!!), so it's possible that it's related.  I'll ask my rheumatologist about it when I see him Friday. 

Meanwhile, I'm trying to just rest it as much as I can and avoid doing things that cause pain.  Which include even letting it hang down at my side, since even the weight of the arm all by itself seems to be enough to make it feel like it's being pulled right out of the socket.  Owww! 

Last time I had shoulder tendonitis (on the other side) it took about a year to heal.  I hope this time isn't that bad!

It's earrrly Wednesday morning, and I'm awake at an odd hour now because since we got home Sunday night, I've been sound asleep all but about 8 hours total (and one or two of those hours are composed of 2-5 minutes here and there to take care of meds, peeing, and such).  And I'll prolly zonk right out again for most of the day today, once I'm done with this post and a couple other things I'm trying to take care of online.  *rubs eyes*  And who knows how much of Thursday, aside from the dentist appt I have in the afternoon (during which I'll likely sleep while they fill umpteen cavities in my mouth). 

There goes most of my whole week to sleeeeping.  But it was worth it.  *smiles*

For anyone who didn't catch this on Facebook, my recent "big news" healthwise is twofold: 

First, according to my bloodwork, I have CKD (Chronic Kidney Disease).  That scares me a lot.  And I get to add yet another new doc to my team, a nephrologist (kidney specialist).  Once I get in to see whichever one I wind up with, I should know more about what the CKD really means for me, I hope.

Second, according to my rheumatologist, the CKD tips my diagnosis solidly to Lupus (SLE). 

Also, this is not as new but is a "still", my platelets, which used to hover around 100,000-120,000 (normal is 150,000-400,000), have dropped to around 65,000 for the past few months.  If they get down to 20,000 or below, then things like splenectomy could start being considered.  This, also, scares me a lot.

As far as how I'm feeling, very tired all the time, and very hurty and sore everywhere, with everything seeming to be flaring at once all the time lately.  I am getting out to a few social things, though, which helps me feel a little more human.  (On top of the zillion and one doctor appointments I seem to have every week now.)  I make up for whatever I do by sleeping a lot on the days I get to rest, of which I hope there will be a lot more again after the holidays. 

How's you?