Wednesday, June 8, 2016

Will update again soon...

Much life is happening, and I'm always several step behind, as usual. But I will be back with updates soon!

In the meantime, here's a picture of Sam!

Thursday, March 17, 2016

Back in the saddle again...

Well, I find that I haven’t updated this blog in a year now. I really have no excuse- it is my home page, so I see it often. Sometimes I look at it and feel guuuuuuilt about not updating...

In my defense, I’ve had a really rough year. January of 2015 I somehow ruptured a disc in my neck, and I’ve been in a great deal of pain from that. It took more than 8 months to get OHP to approve physical therapy for it. It helped some, and I got some range of motion back in my arm, but the pain is still there. So I have a constant level of grey over me from that.

In April, 2015, I fell down the stairs at church. It looked as though I broke my leg- it was really, really bad. The staff in ER sent off to orthopedics to get ready to set it. Then the x-rays came back. It wasn’t broken after all- but I had a massive periosteal hematoma. I was in a boot for six weeks (missed Egils because of it), and I still have a really ugly mark on my leg, and a big dent. That was not fun.

Also in April, I had my hair cut. A blunt cut, jaw length, and my natural curl makes it pretty cute. And on Sundays, all I have to do is touch it up with the curling iron, and it is fabulous. I got a bunch of fake hair for SCA events, and that looks nice.

I had kind of come to terms with the pain issues on top of the fibromyalgia, when the doctor sent me for a sleep study, because I was having symptoms that might be narcolepsy. So we did the long study- overnight, and then daytime naps. They didn’t find any obstruction or apnea. But they did find that for some odd reason, my oxygen drops when I’m asleep- like, nearly 15 points. So now I'm on supplemental oxygen at night.

So several tests and doctors later- including a lung biopsy, they determined that i have sarcoidosis. It’s another auto-immune disease (as though fibromyalgia wasn’t enough), and they started me on steroids.

Ten weeks later, I was 25 pounds heavier, stretch marks all over (a new thing for me- I didn’t even get them when I was pregnant!), and highly volatile. We took me off of them, and put me on a different drug (which is making my hair fall out).

Some time around Halloween or Thanksgiving or so, I started having headaches. Really bad ones. Different from anything I’ve ever had. Really bad in the morning, and late at night. Enough to make my vision a bit low. And I’ve developed tinnitus, really bad. It’s 24/7, and pretty loud. And I’ve lost some hearing in the right ear.

After several doctors, a CT scan, and an MRI, they think I have Idiopathic Intercranial Hypertension, also known as Pseudotumor Cerebri. We’re still trying to get me in to Neurology (more OHP fu). Next step is likely a spinal tap.

My life just keeps getting harder and harder. And I feel like it’s shrinking, and I’m losing more and more, until now all I have is my computer and my books.
There are some bright spots though. David has been here for a little more than a year, and just before Christmas, Lydia and the girls came up to join him. They weren’t doing well without Daddy. They’re staying in the basement, and it’s not ideal, but they’re together. He has a (hopefully temporary) job right now, but the pay is just above minimum, and they can’t get an apartment on that. He’s putting in a lot of applications, so hopefully something will come up soon.

The girls are a hoot though. We have artwork all over, and they go to the park a lot, and they watch They Might Be Giants kids’ videos on my computer. I introduced them to Harry Potter, so they watch that too. The first two movies, that is. The third and past that are too scary, and we think they’d have nightmares. I made them nice sturdy wands a couple of weeks ago, so now the adults in the house have to pretend to be petrified or fall down or whatever. I got the a planet mobile that is nearly put together- the planets had to be painted, which was messy, but fun.

Politics has me pretty freaked out right now. Trump scares me- a lot. And his supporters even more so. The violence at his events is terrifying. Currently I’m supporting Bernie, but if Hillary wins the nomination, I’ll support her. I’d vote for a yellow dog over any of the current GOP offerings.

Well, this should do for now. Hopefully, I won’t wait another year before updating again!

Tuesday, March 31, 2015

My answer to prejudice.

So I have something to get off my chest.
It's my observation that it is a lot easier to fear and even vilify something and someone if you don't know them. Most of the fear of the dark closet at night is the unknown. When you don't know what might jump out and getcha, you're more likely to hang on to something to strike back with.

I grew up mostly in small town, and then rural area. There weren't any minorities, except for one Native American family at my middle school. I'm not sure that I'd even met a black person until my Aunt Verva married a man who was part black. There were a handful of Asian kids at my high school, remnants of the Japanese families who farmed in the valley. For the most part, I went to lily white schools. The year I spent in Hawaii was a complete shock in many ways. Suddenly there were all these people from all sorts of ethnic backgrounds, and I found that, well, they were just _people_ Humans. Like me.

I never knowingly met any gay people. There were a couple of kids who were 'different' (and one that I knew was gay, how, I don't know, but I knew. He's here on my FB and I love him dearly), and lots of talk went around, but given how often 'gay' was used just as an epithet, I have no real idea if any of them actually were gay.

In the churches I attended, fire and brimstone coated any talk about gays. When I was a kid, I had no idea what or who a homosexual was, but apparently it was BAD, and I should shun them. As an adult it was even worse. Through the 80s, and especially after AIDS became a 'thing' (no thanks to the Reagan administration to trying to hide it for so long), the screaming about the horrible gays hand how they wanted to destroy us all and convert our children, etc et etc got even louder. I was terrified of the gays, and revolted by them.

And then something changed. I found the SCA.

It was a bit like moving to Hawaii, in that suddenly I was in an environment were there were gay people, they were 'out' but not obnoxious, and I got to know them. And found that they were _people_. Humans. Just like me. They didn't have horns and tails. They didn't grab my kids and try to make them gay. They didn't break up my marriage (that fell apart on its own, thank you). They were decent people, just as hardworking as anyone else. They had homes, and jobs, and families. And as I got to know them and befriend them, I found that I wasn't afraid of them. I was no longer revolted. And I learned to love them as I loved the others around me. Several of them are here. (Hi! )

Later, I joined the Episcopal Church and found gays in my parish, and in church leadership. They came to worship with the rest of us. They sought to serve and to share in parish life. And they were seeking God the same as I was.

How could I possibly push them aside? Were they not my brothers and sisters?

I'm not afraid of an 'agenda'. Like someone told me, the gay agenda is not taking over our country and converting everyone. They gay agenda is more like "Pick up dry cleaning. Grocery- milk, garlic, hamburger. Do taxes. Fix leak in bathroom sink." No grand conspiracy. They just want lives like the rest of us.

I think that some demystification on a grand scale needs to happen. People need to SEE and know the gays around them, need to see them as _people_, as humans. Need to lose that fear- the fear that leads to terrible actions like the bill in Indiana.

And I think the same of race and religion. We need to meet and learn from people of other races and ethnicities. We need to befriend and learn to care about people from of other religious backgrounds- not to convert them, but to respect them.

None of this will change until we do so.

(My rant about uninvolved, complacent voters is for another day.)

Friday, January 23, 2015

If it weren't for bad luck, I'd have no luck at all...

Well, this winter is being difficult. Not the weather so much- that hasn't been too bad. But life has been very difficult.

First, ZIPPY DIED. I was really distraught, but there was nothing to do about it. We took her in because the front end was acting really weird. Turned out that the main bar that holds everything together was broken- one bolt was holding it together, and only partway. A good jolt or vibration would have left me with no steering at all. And the costs to fix her- if we could get the parts- would be far more than she was worth. And she would still be a 33-year-old car. So with heavy hearts, we donated her to the Humane Society. Wanda got a tax credit, and hopefully someone else will be able to get some use out of her.

That was in November. Then in the first week of December, I had a doctor appointment in Beaverton, and I borrowed Wanda's truck to get there and back. I was exhausted- Lydia and the girls had just gone home from Thanksgiving, and I was still exhausted. I love them to bits, but the girls really take it out of me, and I was completely out of spoons. I fell asleep at the wheel, drifted, and hit two parked cars. I was ok- one scrape, but the truck was totaled. I cannot possibly express how awful I felt about that. (Still do.) And it left us without wheels.

So Wanda dipped into an account (oh, I really felt bad about that!) and bought a little car for herself- a 2013 Toyota Yaris. Very cute little thing, silver, and she named it K-9 after the 'tin dog' in  Doctor Who. Then we got me a used Volvo wagon, 1998, with half the miles of Zippy. Gas, not diesel. Sort of a rose bronze color. I stuck an 'Allons-Y!' sticker on the back, and named it Alonso, so I can say "Allons-Y, Alonso!" Yes, I am a geek.

Lots of money spent, in large part my fault.

The doctor's appointment I was returning from when I wrecked the truck was a gynecological oncologist, specialty surgeon. I'd been having some weirdness, and my gynecologist determined that the endometriosis had returned. With a vengeance- I had a good-sized mass. She decided that she wasn't comfortable doing the laproscopy herself, as it looked like it was going to be pretty involved, and a specialist would be safer. (The oncologist later told me that the gyn was a rockstar for referring me to him- there was no way she would have been able to do it, and she would have had to back out and call him in anyway.)

So I had a robotic laproscopy. They took out a large mass, the size of my fist. There were a number of smaller masses, and further 'flecks' of the endometriosis all over. The surgeon said that it looked like a bomb had gone off. They had some difficulty getting the big mass loose- it was wrapped over the ureter on that side. They eventually got it loose. They also had to re-open the vaginal cuff (where my cervix used to be) to get one of the small masses out, and so that was re-sectioned and resewn. In all, the surgery was difficult- he says he'd rather dig out cancer than deal with endometriosis- cancer is a lot easier. And it took about twice as long as they'd thought. But the biopsies came back clean.

That was the 10th of December. Recovery has been difficult- a lot longer than I'd thought, and more painful. I'm just now getting on my feet, and they said it will be about May before I'm really back to normal. Joy.

Now just to make things really fun, I developed some serious pain at the back of my neck and down my left arm. I realized it wasn't going away, and Sharon Rose (massage therapist), who is also a rockstar, told me something was wrong and I needed to see my doctor. So I went in. My doctor was booked, so I saw the intern, who thought it was a bad rotator cuff. I went to Twelfth Night that weekend, and was miserable- couldn't dress by myself, was on pain meds, slept through the court I wanted to be at, and missed a lot of the event. (Did see Phil and Annie though, and that was nice, :- ) I went back to the doctor that Monday, as it became clear that it was not the rotator cuff when the pain started going to the right arm also, and my hand started having intermittent numb spells. They decided that it was a bad disk in my neck and sent me for an MRI. That showed a bulging disk and inflammation, but the person reading it didn't think that it was bulging enough to cause a problem. Well, I beg to differ!. He may not think so, but my body sure does! So back to the doctor I go. They want to send me to the pain clinic, but I think that is really just palliative, and I really want to fix what's wrong. I'm not sure how persuasive I can be.

I did discover that a somewhat contentious Laurel meeting isn't so bad if you're on hefty pain meds. Need t remember that. :-) )

So basically I'm living on pain meds, watching the clock, and having to do without if I have to drive or otherwise be awake. It sucks. It's no way to live. And very depressing. Very, very depressing.

I took the twins to the ball Friday night at Twelfth Night. Made them little Italian Ren outfits- pint bengaline with bows down the sleeves. They were too cute for words. Unfortunately, Lydia and I were so busy with child management that we forgot to take pictures! And it seems that no one else got any either. But they had fun dancing, and they got to meet the king. He was very sweet to them, and I think they will remember it.
 Next month, over Valentine's Day weekend, James and I are going to the coast for the weekend, by ourselves. No events, no meetings, no 'honey-do' projects, just time for us. I can hardly wait. I'm really hoping that the streak of bad luck is over before then. I really need a break.

Sunday, August 31, 2014

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.

Monday, July 14, 2014

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!

Monday, July 7, 2014

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.