Walking in Midnight Snow

It's coming down in sheets of white speckles against the blackness -- barely snow, but not sleet. Everything around it is dark, but it clings to cars and grass, disappearing on the pavement and sidewalk. Have you ever enjoyed the first snow of the year with a husky? She's like a kid at Christmas: wide awake, bright eyed, and eager to go trot around and enjoy the air, the cold, the snowflakes, and the leavings from this morning's trash pick-up. (laughing) Okay, so maybe not quite like kid, who I hope would go for the pies rather than the old turkey bones!

So, About my Tattoos

I acquired my woad tattoos over the summer, and I must admit, I’m interested in going for more. (grin) Don’t worry. Woad tattoos only last a week or so, so I’ll not be piling design upon design. But this urge to add design, even in a semi-permanent form, is new to me. It actually caught me by surprise, since I’d only planned on doing something small around my ankle. But the compulsion grew with each addition, and pretty soon I was tattooed to my right knee on the one side, and to mid-calf on the other. (grin)

My enthusiasm certainly was catching, as many people I didn’t think would try the fun joined in. By the time we were done, at least seven or eight people were flashing woad tattoos, and several had more than one. Ankles and toes were favorite spots since summer sandles were being worn.


Most people were also in the midst of dyeing various hanks of yarn, shirts, shorts or sweaters in the huge vat of blue dye, so frequently designs hat to halt mid-application and be picked up again one the more immediate problems had been attended to.


This was also an interesting experiment in terms of design. Those on the right leg were more fluid, sweeping, and certainly looked better on MY flesh. I tried a more angular look on the left and wasn’t all that thrilled. My flesh does not do angles. (sigh) ah well, I can admire angles on others.

despite my disappointment with my angular bits of staining, most of the celtic knots, dotted patterns, and swirls turned out well for me and for others. One thing to keep in mind is that we had not actually PLANNED this tattooing extravaganza, so -- all the designs were painted on with a wooden coffee stirrer! (laughing) When we decided to go primitive, we went all the way!


And I must admit, my legs haven't looked that interesting in years -- not without stockings! I left the party with painted legs, some wonderful naturally dyed Saxon Blue sock yarn, an over-dyed summer shirt, and a soft woad blue dyed lampshade cover that I'd knit a couple of years ago. It was a great party, and anyone in the area should join in the next time True Blue Fiber Friends has another Saxon Blue Party -- you never know what you'll come away with!

LOLcats

Loved this one. Looks like a cat I had, the incomparable T.S. Eliot.


moar funny pictures

I Didn't Cheat --- It's just WRONG!

Okay, I swear I didn't cheat; the silly quiz is just WRONG! Calm? Zen? Hippie? Okay, maybe a bit in terms of ethics. But the rest? Balanced? Calm? Wow.

You Are Mint Green

Balanced and calm, you have mastered the philosophy of living well. Your friends seek you out for support, and you are able to bring stability to chaotic situations. You're very open and cheerful - and you feel like you have a lot of freedom in life. Your future may hold any number of exciting things, and you're ready for all of them!

What Color Green Are You?

Words to Live By

Stolen from Sethra at Porter Family Pursuits

Words to Live By


Do Not Meddle in the Affairs of Dragons for you are crunchy and good with ketchup.

Ain't it the truth! [grin]

I'm Still Charmed!

I Can't Help It. I'm Hooked

Couldn't resist this one either!

Snowball the Dancing Cockatiel -- just because

Just because everyone should celebrate Friday like this if they can!

Retinal Atrophy

Scar atrophy post sub-mac

Some history before the update. I have Ocular Histoplasmosis Syndrome or POHS which has caused the total loss of central vision in my left eye (1990) and visual field losses in my right as well. I had sub-macular surgery in the right with Dr. Matthew Thomas back in the dark ages circ. 1993, and I’ve been stable since baring a small inflammation in 1995 controlled with prednisone. Since, I’ve developed severe light sensitivity due to many factors including a pigmentation migration from the areas around the last scar / vessel that blew and the fact that my pupils no longer contract normally, but stay open to 7 or 8 mm (full dilation) most of the time.

Well, about three weeks ago, I had a sudden decline in visual acuity from about 20/35 to 20/70 (all this in the right eye, since the left lost all center vision in ’91). Visual field disturbances in all four quadrants. Eye pressure up to 22 in the right eye an only 9 in the left. Not good at all. That way a Saturday night in the ER.

Monday I saw my regular ophthalmologist. Vision still down at 20/70; eye pressure up to 24 or 25; 25 being the beginning of the range for being concerned about glaucoma. Regular ophthalmologist pontificated and told me to go home for a month and I might “want to buy a magnifier” – the dolt!

I called Thomas’s office and had an appointment for 9 am that Wednesday. Gotta love working with professionals! Even his office staff is the best!

After spending most of Tuesday fighting with the Mason Eye Clinic about whether or not they were going to give me copies of my records including the floresine angiograms they took (I won after several hours, multiple conversations with my tape recorder going, and the promise that if I didn’t walk out of there with a CD with my pics the next call would be to a lawyer, AND a phone call to Dr. Thomas’s office to have them call and apply pressure), my mom and I went to St. Louis. She flew in from Pennsylvania Monday morning to go with me and is still here.

Thomas took some pics and angio and an OCT. No bleeders, no inflammation, no fluid at all in the OCT. (Cool test, btw!) But I’ve a record of being able to see what’s coming long before they have anything to shoot at, sometimes as much as six weeks. So. Come back in two weeks if no improvement or four if it gets noticeably better. Sooner if something drastic happens.

I’m back in two weeks (this Wednesday, April 16th) They can get me up to 20 / 50 with best correction. Again, no sign of vessels or a bleeder or any fluid registering in the OCT; the one spot that looked like it might have been the beginning of an inflammation is now totally quiet.

The conclusion. Atrophy of the surgery scar and surrounding tissue. Visual acuity will wax and wane as the retinal tissue continues to deteriorate. Nothing to be done. Nothing. Go ahead and get my new glasses. (I have an RX from December I’ve been too busy with depression and other things to get filled) Come back in a month for monitoring in case it IS actual histo activity that I can see before they can. But apparently this is something that they’ve seen before. The sub-mac surgery gave me fifteen years and no re-occurrence, but now it’s going to just fade out as the tissue atrophies.

I’m not sure HOW I feel at the moment. While I wasn’t sure I’d be able to stand getting a shot in the eye every couple of months, I was willing to try, to at least attempt to fight it. But now I’m told there’s nothing to fight. The fight to maintain and make best use of my vision has consumed most of my adult life. This started when a routine eye exam at Sears resulted in the optician saying "Did you know that you have large white spots on your retinas?" when I was 23, and I’ll be 43 near the end of this year.

The last few years have been a major battle with the photophobia, but we’d just gotten the pain management under control with the use of prosthetic contacts with a 2mm pupil and a total black layer under the rest of the “iris” of the contacts, which are a dark brown, rather than my own green to further block the light. It was working. Almost no headaches for eight months. I still couldn’t see as well with the contacts in, and I still couldn’t see outside in the sunlight. But my quality of life is much better.

And now this. I’m just -- pole-axed. I’ve longed for the constant anxiety and battles to end; I considered refusing further treatment and just living with whatever came so I could live my life without the constant fear and battle. And now this. I’m so damned pissed off that I don’t even get to make THAT choice that I don’t know which way to turn. No treatment. No research into any way to boost or support the tissue that’s left. Nothing.

Thomas was great. Explained it all twice, so my mom and I could take it in. Walked us through the pictures and the OCT printouts. He’s a marvelous doc and an excellent communicator. But. damn.

Retinal Education

The subject today is retinas. Mine, to be precise, although this first picture isn't -- mine, that is. This is a picture of a healthy retina from a medical site here on the web. See how nice and shiny and pink it is? The light spot to the right with all the blood vessels branching from it is actually the optic nerve, while the darker pink area in the center of the field is the macula. The macula is the portion of the eye where the retinal tissue is very thin, and where the eye is able to produce the fine vision that allows people to focus on print, small objects, and fine details. You'll notice that this area has no blood vessels snaking through it. The tissue here is far too thin for even the smallest blood vessels.

The eye disease that I have, presumed ocular histoplasmosis syndrome or POHS, causes the body to send blood vessels into this area of fine vision. The vessels rupture the tissue, destroying its ability to absorb light and transmit information, and they also rupture, obscuring even more vision with blood.None of this can be seen from the outside, but it can completely obscure the center vision should treatment be unsuccessful. The retinal results look like this second picture, which is an actual photo of my left retina.

As you can see, the macula and the even more delicate region of the fovea at the center of the macula have been completely destroyed by rogue blood vessels, ruptures, and scarring. The area around the optic nerve also shows similar signs of bleeds and scarring, but bleeds that far from the center don't actually affect my vision and the doctors have never indicated that they present any danger to the optic nerve itself.

This final picture shows my right retina -- the one that had a bleed fifteen years ago and which Dr. Matthew Thomas at Barnes Retina Institute was able to remedy somewhat by taking the whole thing apart and removing the blood vessel, and then putting the eye back together again.

The procedures involved have much more glamorous and imposing sounding names like "vitrectomy" "sub-macular removal of the neo chordial vascularization" etc., but you get the general idea.

In this last picture, you can see the black crusty scars of bleeds near the optic nerve, but only two black spots near the macula. One is a laser scar, the first treatment attempted on this eye when the first blood vessel ripped through the retinal tissue. The laser burns through the retina, destroying it in the hope of cauterizing the vessel and preventing more bleeds. This didn't work, and the second black spot (the larger) is where the second blood vessel broke through with such force and enthusiasm that my center vision was completely obscured within just a few seconds.

The dark shading around the macula represents areas where the tissue is starting to atrophy. The process of removing the offending blood vessel and the pooling blood involved separating the retina from the back of the eye, and separating it from the nutrient layer underneath. Over time, areas in which the nutrient layer and the retina did not fully heal together have started to atrophy which will eventually cause a gradual loss of acuity in and of itself.

The shiny whitish areas in the macula of this eye are places where the pretty pink pigment decided that enough was enough, and it bugged out all in a few seconds, causing me to think that a Kentucky Fried Chicken sign announcing "The New Honey Barbecue Wings" would be the last thing I'd seen on earth.

But, thankfully, this was not the case, as the bug-out was just a precursor to the second bleed in this eye. My vision cleared after several minutes, we made yet another flying trip to a hospital an hour and a half away, and my vitreo-retinal specialist at the time, Dr. David V. Poer, said, "you shouldn't have been able to see that!" -- not the first or the last time this phrase was used in reference to me and my eyes. (grin)

The smaller whitish dots out from the center are additional histo scars which may be drawing blood vessels to them. These scars, the pigmentation migration, and the fact that for some unknown reason my pupils now remain dilated to about 7 or 8 millimeters all the time are some of the causes of my extreme light sensitivity. But that's a topic for another time.

Currently, my vision is changing yet again. About a week ago, I noticed some changes in my vision, Careful examination on an amsler grid shows changes in all four quadrants, blurred places, bent lines, glittery shapes, flickering shadows, all of which indicate that the disease is again active, and that something is coming. Probably a blood vessel, maybe more than one. But some portion of it seems to be headed directly for the center of the macula. The ER noted that my acuity in the good eye had dropped from 20 / 40 to 20 / 70. So began the frantic trips to the retinal specialists.

Dr. Thomas with his fancy tools, including the new OCT-whatchamacallit which functions like ultra sound and can pick up the tiniest amounts of fluid under the retina are going to try to determine when the threat warrants treatment with the cancer drug Avastin. So far, we are in a holding pattern. It's clear that something is going on, but so far, the photos and angiograms aren't showing any bleeds. Nor does this nifty new thing that works like ultra sound show any fluid yet; with my history, it's just a matter of time, but the docs can't start treatment until they have something to shoot at.

Personally, I wish the whole thing would hurry up. Being blind is only a pain in the butt. But the process of loosing vision is hell on earth. My mom flew in from PA on Monday to go with me to the first appointment with a local guy. She'll be staying indefinitely and working via e-mail, etc. From my history, it'll all be over but the shouting in about a month, maybe a bit more. Once they find something they can target, the newest treatment involves injections into the eye with Avastin, a cancer drug, about every four to six weeks. This will cause the blood vessels to wither and retreat and allow what parts of the retina that can heal a chance to do so, but whatever is destroyed when the blood vessel bursts through will be lost for good.

I'm not at all sure how long my nerves will tolerate having them stick needles in my eye while I'm awake, though I'll be requesting some significant sedatives. So I don't know how this will play out. Some people have continued the treatments for years; some have three or four and then the disease goes back into remission.

Knitting is a wonderful consolation; a friend here has started to record the pattern instructions for the shawl I'm working on into audio, since I can't stand looking at the charts now, and may never be able to again.

I've also started selling my home-made stitch markers in the local yarn store and earned enough to get a spindle and a bag of fiber. I had everyone in the local waiting rooms fascinated with watching me spin (grin) while we waited for eyes to dilate, photos to process, or other time consuming tortures. "Sitting and spinning" has multiple meanings for me at the moment, so I'm glad at least one of them is productive!

More pics of fiber and fripperies in the next post, and perhaps that promised discussion of skip tags!

Basic Accessibility for Blogs and Sites

I’ve taken my time working up to writing this post on how to make a blog or website more user friendly for more people. The most interesting part of the process for me has been deconstructing my own assumptions in order to address the confusion people may feel about why some alterations to standard blog editing and formatting are necessary.

While I’ve been “between” sighted and blind for more than 10 years, the steps I’ve taken to make use of adaptive techniques and resources have been gradual ones. I’ve rarely given thought to something until I needed it. When I need something, then I figure it out. [grin] Not the comprehensive way to learn or study something, but life HAS been busy in the interim.

General Principles

So. Accessibility. Making a website more friendly for those who use adaptive computing programs and tactics. One of the first things to understand would be that the more complicated the site, the more careful a designer has to be to integrate accessibility features in the construction. All the interactive tools that allow a site visitor to interact with the site are lovely things, and web designers have done an amazing job coming up with new ways to make sites fun and attractive.

Fun and attractive do NOT have to suffer in order to make a site more accessible, but often, talking with designers can be like talking to new writing students about ways to adapt their writing to suit a wider audience, rather than to just suit the professor or their friends. It can make them grumpy because they think that the constructive criticism is actually negative criticism. So that would be the first point I’d like to address – I’ll be talking from the stance of already greatly appreciating the work that designers and programmers have done. The things we can do on the web are amazing, and having all these options available in a format that is, by its very nature, easier to access and adapt than print on paper is a marvelous transformation.

Basic Philosophy and Function

The main premise of making websites more accessible is pretty much a no-brainer: why would you NOT want to increase your readership, your patrons, your advocates, your contacts? We’ll assume that you’ve answer that question with an “of course” and move on. At some other time, I’ll regale you with tales of the profound effect web access has had for vast numbers of people who have used this technology to improve and increase their interactions with the rest of the world. For now, I’ll focus on reviewing some of the ways people with disabilities access the web and then move on to basic things people can do to improve the experiences people with disabilities have on their sites.

First, in case you are new to my sites, yes, blind people can access the web. They don’t have to be able to see to read your blog. I access the web using a screen-reader software program called JAWS, made by Freedom Scientific. If you’d like to hear what your blog sounds like to me, you can download a trial version of JAWS by going to the [link follows] Freedom Scientific site. This trial software is set up to let you use the program for 40 minutes at a time; for additional use, simply re-boot your computer to re-set the software clock.

Other programs frequently used by people with disabilities include Window Eyes, another screenreader, Dragon Naturally Speaking, which allows people to use voice commands to navigate and type, and Zoom-text, a program that provides comprehensive and variable screen magnification as well as basic document reading capabilities. Additionally, many people use adaptive hardware, including joysticks,

These are just a few of the programs available, but most adaptive programs alter the way someone interacts with the web in one fundamental way. They change the way the person navigates the site. Rather than navigating visually, and using the mouse to shift the computer’s focus to the desired link or segment or visual, most adaptive programs involve using keyboard commands and keyboard navigation tactics to negotiate the site.

Using the keyboard to negotiate the site and shift the computer’s focus means that a person accesses the site in a linear progression, as if all the style sheets and formatting were removed, rather than by scanning from left to right or right to left and then down. Or by following the most dramatic and active elements on the page such as flash movies or components. In fact, flash elements can aggravate the process immensely, since many times, the adaptive software can get “hung up” on the flash element. So anytime a designer can provide a way for someone to skip past a flash element or at least work to insure that the flash element isn’t the first thing that the software will encounter on the site, that designer has already improved the experience of many people who want to access the site.

Well, that’s enough for now. The next installment will be on skip tags: those wonders of html coding that let someone jump to specific content without using a mouse!

How many People?

Well, I got this one from Knitnana, but I must say, elementary school is always a good indicator for this. We had three girls with my name in the same classroom, and more in the other two, so, how original could it be?

HowManyOfMe.com

There are 81 people with my name in the U.S.A. How many have your name?

The funny part? My mother's frustration! She'd chosen names for me and my brother some ten years before, and just happened to have her children when these names came into popularity. What was unusual, became common place. (sigh)

Got Spoons?

Thanks to the wit and linkage of the Infamous Lady Bracknell, the Lady Bracknell of "The Perorations of Lady Bracknell," mind you, I have been introduced to the "Spoon Theory" of explaining life with a chronic illness or disability. Spoons work well. So would matchsticks, or beans. But the story of the spoons, to be found on "But You Don't Look Sick?" and written by Christine Miserandino has a certain charm and applicability, since spoons are not easy to carry nor easy to forget when you ARE carrying them, and the feeling of being without them once you are used to them is a significant loss.

When I can, I'm going to have to invest in some "Got Spoons?" paraphernalia.




There are days I got spoons, and days I don't. This has been a marvelous week for collecting sources of spoons, or sources of spoon reinforcement, one might say.

In addition to some exhilarating discussion to be had on the forums at Ravelry.com, I've also been chatting with folks at Disaboom (disaboom.com), yet another vigorous community for folks with disabilities and their friends and families. If you sneak a peek, you should see some new buttons over in the sidebar which reflect this week's expansion in my participation of various online communities.

Now, lest it be thought that I'm always connected to my computer (close, but not always, it would get in the way of the knitting and of sleeping), and that with such a connection I should certainly be posting FAR more often, it should be noted that my participation in the groups on Ravelry has led me to more local connections, and I'm to be found, almost weekly, at one of the local coffeehouses chatting away with fellow knitters, hookers, and spinners, not to mention the occasional weaver. We're a very accepting bunch, so local folk who just want to drop by are welcome -- Rendezvous is a marvelous coffee house -- and while a craft of your own is not necessary, we can provide you with sticks and string as "set dressing" or "props" if you are feeling left out. I'm sure more than just myself would be willing to provide instruction as well -- Ruthanne, this is targeted at you! (grin)

My search for a good, non-copyrighted picture of a spider web that I find suitable for the header for the group I want to organize on Ravelry myself has not been very productive. My attempts and drawing one myself in "Paint" have been absolutely GHASTLY! But I've had some luck with plain paper and pencil, so I may make use of the scanner and keep it simple.

I've also signed up to participate in an experimental group of feminist knitbloggers, making my own little niche by concentrating on academic and disability related contributions. More info on that as it reaches me.

Since I have finally gotten a new laptop to replace the one destroyed in "The GREAT Sodapop Debacle of November '07," I should also be able to become more regular about posting here again. Tomorrow I'll see about posting a knitting update with pictures of all the Christmas knitting. I've also started a pair of thick superwash merino socks for myself AND one of the "Tea Cozy Elf Caps" from Charmed Knits, the Harry Potter knitting book I got from my SIL for Christmas.

The dogs are sleeping, and it's now time to make banana bread and pumpkin bread for tomorrow's winter celebration for the local Ravelry knitting group. Yeah! Who knows what I'll get in the white elephant stash exchange? I've put . . . . well, I can't very well tell you, now can I? It's supposed to be a surprise!