Update from July Coronation-

I just want to put up a few pictures of Ursel's elevation clothes here, partly because I can't get them to load into the files at the 12th c Garb Yahoo Group...

Over her linen chemise was a gown of palest green silk (think light celery green), with long tight sleeves that ruched up. Over that was a gown of green brocade, cut in the manner of the Germans (basically like the clothes in teh pictures in the Gospels of Henry the Lion of Saxony. The yoke and a band around the hem were done in a lovely peacock blue silk, which also lined the maunche sleeves. Laurel leaves were appliqued around the yoke.

On to the pictures!

 The yoke, with narrow trim and appliqued leaves.














Not so great picture of the hanging gown- the color is sort of off there- should be much warmer.

And several shots of Ursel, during and after the ceremony-

 

I haven't been able to find a full-length shot of her- if I get one, I'll post it.

The New Doctor?

So, I did it. I called Care Oregon and arranged to transfer clinics. I looked on their website and found a doctor there who's a likely suspect.

 

• Specialty: Internal Medicine

Clinical Interests: Cardiovascular Disease, Chronic Kidney Disease, Diabetes Care, Hypertension, Thyroid Disease  

"I believe in a holistic approach to patient care - emphasizing the role of social, mental, and environmental factors influencing health and wellbeing."

This has distinct possibilities. He specializes in several things that are major issues for me, and he's an internist, so he's more likely do have the background to offer the close attention my problems need.

He's Indian, has been here since 2003. I don't know if there might be communication problems; on the other hand I think I might be better than most at handling them if they arise.

So I'm meeting him for a new patient appointment on the 24th. I suppose I'll see then if he's a good fit.

In the meantime, I saw a Gynecological specialist Friday about the bleeding issues. She had some labs taken, and she's going to consult with some colleagues. She said we might need to do a biopsy and/or excision. There is a nodule, possibly just scar tissue, but possible a recurrence of the endometriosis. 

And according to her, I should have been getting progestrone as well as estrogen, to keep the endometriosis down, but I haven't been. Less than happy about that.

So life could be interesting medically for awhile. When hasn't it been?

Any guesses as to how very tired I am of all this?


In other news, it has been HOT. Lay-around-and-sweat hot. Naturally, I have a deadline and am spending a lot of time in the studio, which is naturally in the attic. We have window unit A/C, but it is still pretty oppressive. And I HAVE TO finish this stuff...

It's going to be FABULOUS though. I might get some pictures later today and put them up. My phone gets lousy color, but I think enough should come through to offer an idea of what it looks like. I'm pretty happy.

So it's back to my iced tea, and upstairs to work. I have no fingerprints- the handwork has erased them. As James would say, time to rob a bank!

The Non-Writing Life

Just to add to the guilt of the day/week/month/years... Three writing projects on the hard drive, in various stages of production. One of them up to about 30k words. And they feel good. But why can't I summon up the self-discipline to get any work done? It occurs to me that the oomph probably went the same place that the sewing energy went. Maybe the depression? About all I can do is sleep and watch videos. And do doctors stuff.

Bugger.

Need a Doctor!

Yes, I've been watching Doctor Who again. Went through a bunch of the old ones (I think Tom Baker was AWESOME), and then the reboot. I'm down to Tennant's last two episodes, and almost hate to watch them, because I hate to see him go. He was so...  he so caught the spirit of the Doctor. Mercurial- lighthearted one moment, deadly serious the next,ebullient, or deeply introspective...

And damn sexy to boot! I think it's the eyes. And the maniacal grin. (Yes, I'm besotted.)


In other news though, I'm shopping for a new Primary Care Physician. I've been with Judy Becher for 14 years or so, and in general have been happy with her. She's a good doctor in general, a solid GP. The problem is, I'm not ordinary. I think she's out of her depth, dealing with someone who has multiple, interlinked problems, and chronic diseases. She's let things slip that should have been attended to, and stuff happened. For instance, my creatinine levels were elevated for quite some time, and nothing was done- in fact, I didn't even know about it until my rheumatologist said something. Now I have Chronic Kidney Disease. I asked the nephrologist the other day, point blank, if the creatinine levels had been addressed when they first went up, or even as late as a year ago, would I be seeing her now? And she said flatly No.

Well now.

It turns out my platelet levels have been up, to Bad levels, for quite some time. I'm having weird bruising issues. Trying to get a referral to see a hematologist. So far (ten days after dr visit) nothing is forthcoming. And after a terrifying and weird bleeding incident (I had a hysterectomy 20 years ago- so why was I bleeding?), I was told I'd get a referral to a GYN specialist. Nothing happening there either.

Needless to say, I'm not happy.

I called Care Oregon Monday and asked about how to get a new PCP. Got suggestions and some names to look into. So I get to doctor shop.

I'd much rather just get David Tennant to be my doctor!

***

So, the new pavilion was built- and turned out great! I was biting my nails as we put in up, but it worked perfectly. I haven't had a chance yet to paint the poles, or add the painted borders, but I will. Then it will look even cooler.

The internal curtain worked well too, though it was a bit dark inside. However, it kept the bed area quite cool,which was really nice. And gave us a tiny bit more privacy.

David and Lydia and the twins came out for a day trip that Saturday. They had a blast- especially the girls, who had a chance to run around in the grass, and chase Tadhg and Morrghan's boys. Sadly, I didn't get pictures.

We had a birthday party for James, who turned 50 on May 16th. I'm having a hard time thinking of him as 50, until I see the silver in his hair (the result of working with middle-schoolers, certainly). And then I look in my mirror...

I'm working on clothes for Ursel, who is being elevated to the Laurel at July Coronation. I'm also doing vigil baths for she and Suvia both. It will be a busy weekend!

***

Ok, lest you think that all I do is hang out online (I have got to remember the close the Facebook tab instead of leaving it open), I actually have been working. Have stuff going upstairs, when I'm up to moving about. Otherwise, reading, and writing.

Current reading:

_Charlemagne's Courtier: The Complete Einhard_, edited and translated by Paul Edward Dutton.(Broadview Press, Ontario, Canada, 1998) (Just finished this, in fact)

_The Carolingian World_, Marios Costambeys, Matthew Innes, and Simon Maclean,(Cambridge University Press, Cambridge, UK, 2011)

_Carolingian Portraits: A Study in the Ninth Century_ Eleanor Shiple Ducett. (University of Michigan Press, Ann Arbor Michigan, 1988)

_Franks, Burgundians, and Aquitanians and the Royal Coronation Ceremony in France_ Elizabeth R. A. Brown; Transaction of the American Philosophical Society, Volume 82 part 7. (The American Philosophical Society, Philadelphia, Pennsylvania, 1992)

_Lex Salica: The Ten Texts With the Glosses and the Lex Emendata_, J. H. Hessels, H. Kern, eds. (Elibron Classics, London, UK, 1880)

No fiction, except for the stories in the New Yorker (just finished the summer fiction issue and my head is in a really weird place). Maybe later in the summer.

In my copious spare time, of course. 

Struggles Past and Ongoing...

Ok, it's a fair cop.

Earlier last night I finished watching Stephen Fry's two-part thing 'The Secret Life of a Manic Depressive'. And it shook me up a bit. Well, maybe more than a bit.

I was diagnosed when I was at school. '95 or therebouts. Got on the medication merry-go-round then because I had to, just to cope with daily life. It's been a wild ride since.

Mostly I struggle with the depressive end of it. I'm Type 2, so the ride isn't as bad as it could be, but it's still seriously unfun. I managed to get through for quite some time, mostly by sheer force of will, but not long after a traumatic breakup, in fall of '98, I had an abrupt manic cycle, and a subsequent crash. The breakdown, hit hard, and I never really recovered. It completely torpedoed my academic career.

I'm still struggling, 15 years later. I've gotten pretty good at recognizing the up cycles- they terrify me and I do everything I can to even them out, but the fact remains that underneath it all, the depression has never really ebbed. If you poke me just about any day, I'll likely say that I'm about a 3, on a scale of 1-10.

I'm having to deal with other medical issues too- the fibromyalgia, cardiac stuff, chronic asthma, thyroid problems, arthritis, high blood pressure, and now, chronic kidney disease, in part the result of the meds I've had to take to treat the manic-depression. I'm on a rather frightening amount of meds, which I have to be very careful to take at the right times, in the right ways.

Really, it's not a pleasant way to live.

Stephen remarks at one point in the film, after admitting to more than one suicide attempt, that he realizes that he really doesn't want to kill himself, he just wants to be dead. I can identify with that- but I don't really want to die- I have a lot to lie for- a man I adore, children I love dearly, and granddaughters, friends I care for deeply, a church and social life that means a great deal to me. But I will admit that there are times that I wish I could just go to sleep and stay that way. I've been in a lot of pain in a lot of different directions. I can't take basic analgesics anymore, and the heavier stuff makes me groggy and morose. The anti-depressants don't help that much, and the side effects aren't worth it. And we're having to scale back- and probably drop- the lithium, because of the kidney issues. So I'm kind of stuck.

I'm not functioning very well right now. Just sort of 'getting by'. And barely that. I can't seem to force myself to write, which is frustrating, because that is good for me. I have craft and sewing projects that are years behind. I bite my nails till they bleed. I've found myself pulling at my hair again (doesn't help thaqt the white is a different texture and it drives me nuts). I can't hold a job. Getting to church Sundays sometimes takes herculean effort. About all I feel like doing is sitting here, watching QI reruns, a bit of Netflix, hanging out on Facebook, reading email. I try to get down to see Teh Girlieez once a month or so, but that saps my energy so badly I usually end up sleeping for days afterwards.

Sleep is a problem. Either I sleep too much (exacerbated by fibro and arthritis flareups) or I can't sleep, like now. I feel like a zombie, and I know it doesn't help AT ALL.

Seeing the pain that Stephen deals with- and the people he interviewed- really woke me up to the state I'm really in. I'd been telling myself I'm 'well managed'. I'm not. Time I was honest about it.

At the moment, I don't know what to do about it. The meds aren't cutting it. Therapy doesn't really change anything. It feels good to watch cartoons, or QI, or Doctor Who, or the Marx Brothers, but the warm fuzzy doesn't really last.

I really not trying to whine, or attention-seeking. Really. Just trying to be honest. But I have to say, I don't know where I'd be without my loved ones. And I don't know that I'd survive without the medical care I've got. And I have to say, in no uncertain terms, that if any of you feel similarly, GET HELP.

I may never 'get better'. This may be good as it gets. But I figure that every day I spend above ground is a good day, and that's something. For now, it will have to do.

Not another...

You know, there are times I feel like the universe is using me for target practice. This is one of those times.

My primary care physician sent me to see a rheumatologist, because the fibromyalgia pain, coupled with the arthritis pain, has gotten out of hand. I've been taking aleve and ibuprofen by the handful, with not enough relief, and for some reason she won't prescribe anything stronger. (I think this partly may be because of oversight by OHP, or simply something of profiling, as I live in a maybe not-so-good neighborhood, etc.)

So I went off to see the rheumatologist. She poked around, made frowny faces at my joints, and at my chart, but was visibly upset about the NSAID use. And apparently my creatinine levels are too high, which indicates kidney stress. So she told me to drop the NSAIDs, cold, and fill in with tylenol until we can track down the kidney issue. This does not please me, because if tylenol would do it, I wouldn't be taking the high doses of NSAIDs. And she sent me for more labs.

The next labs were no better. And my right knee (the bad one) and hands are pretty bad. So we took xrays, more labs, and she sent me back to my primary care to get a referral to a nephrologist.

Back to Dr Becher. She didn't seem to be terribly exercised about the kidney stuff, but took yet more labs and put in for a referral to a nephrologist. That was Friday.

Monday I get a call from her nurse. The Friday labs did more testing than just the creatinine. They were bad. The official words are Chronic Kidney Disease. They're fast-tracking the referral, and they gave me a sheaf of info- mostly new diet stuff- to go through while waiting for the nephrology appointment.

Interestingly, a fair proportion of the stuff in the diet recommendations, etc, are directly opposed to diet recommendations I have to follow to deal with my meds, mostly the bi-polar meds, and those are not negotiable. And the potassium is a problem.    This could be interesting, trying to balance all of this. The bi-polar stuff is not negotiable. But my kidneys are also very important.

(bang head on desk)

So we wait and see what the nephrologist has to say.


In other news, Phil and Annie went to 12th Night with me, which was great fun. Phil even enjoyed court, which was unexpected. They are getting tucked in to the Madrone scene, and it helps that they got involved with Pembroke and his household right away. And they are both in armor, which is cool! Phil is enjoying himself, but Annie is loving it, and she's decided that she really wants to be a knight! That is cool as all get out.  :-D

Church is good. I don't know if we have the stove issue resolved yet. Annual meeting is Sunday, but there's supposed to be 6" of snow on the ground.

And my hair is still a wreck. Bah. Rain, I said! Now snow!

Dry, dry, dry, dry, dry...

Ok, this is not actually me. But that is pretty much what my hair looks like these days.

It's not far off of that normally, but our weather has been really dry of late (yup, no rain in Portland), so it's even worse. If I leave it completely alone after washing ti- no combing, just towel dry and fluff it- it has ringlets for about half of the day. And then it gets fuzzy. If I use the hairbrush on it, it is even worse. I look like Roseanne Roseannadanna. .(Yes, I know I'f dating myself there.) Or worse, Cousin it.

Leaving the conditioner on longer than usual makes it floppy, but still frizzy. (and I don't get the ringlets at all.) Product makes it crunchy and frizzy.

So mostly I wear it pulled up with a big clip, or wind it into a chignon, or braid it. Bah.

There are days I'm tempted to shave it off.

Pray for rain.


It's not just my hair. My sinuses and the inside of my nose are really dry, and one side of my nose cracks and bleeds, so I get nosebleeds. Not fun. I keep putting lotion in it (the thick Nivea stuff that comes in a canister), and I got myself a wee crockpot to put a little moisture into the air, but it seems that it is not enough. And my throat is sore, same reason.

Pray for rain.


Oddly enough. our hyacinths are coming up already. In January. The greens are already about a foot tall. I worry a bit about them, as it's been really cold (26F at the moment- cold for Portland) but they seem to be ok.


In other news though, I'm not doing so good. I was in to see the rheumatologist on Friday, and she was not happy. My last labs came in with elevated creatinine, which means I have a problem with my kidneys, most likely due to the ibuprofen and naproxen I've been taking. Well, as I told her, I'm taking scads of it because I'm fucking desperate. My pain levels have been way up, and unmanaged pain just feeds the inflammatory process, which snowballs. So we took more labs, and some xrays of my hands and knees, which are inflamed at the moment. I'm actually hoping to get neck and back done too- I know there's problems there, and I want to see what we can do, if anything.

So we've dropped those pain meds completely, which means I'm in a LOT of pain right now. She wants me to take Tylenol, specifi doses and times, to see if that helps. Well, Tylenol has never done anything for me before, and it isn't now. But I'm suppose to give it a couple of weeks. Bah. My hands really hurt, and my feet are flared up- feels like I'm walking on rocks.

I have to admit I'm worried about the kidney issue. That could be really bad.


Church has been good. We're still working on getting stuff together for the search for a new priest. For some reason it's really dragging on. This survey, that survey... though I can understand how we're really really trying to make sure that we get a good fit this time.

We got the renovations finished, so at least we won't have to worry about the dry rot on that corner of the roof. Hopefully we'll be able to maintain the building a bit better than has been for the past 10-15 years. We're also looking to refurbish or replace the stove in the parish hall. It really needs work. But somehow that project is dragging on and on and on... it's becoming a standing joke.

Pray for brain.


Valentine's weekend James and I are going to a couples' conference at Good Samaritan in Corvallis. It's basically once of those enrichment things, but I'm hoping it will help us get through some of the communication problems we've been having. I think it will be good for us.

Pray for sane.