XMRV research and "neuro-immune diseases"

I've mentioned here before that I have Fibromyalgia.

Once upon a time, that word wasn't anything to me. It was syllables coming through the phone line, crossing two thousand miles from my sister's home to mine, as she told me she had been diagnosed with this strange-sounding thing. I had no clue what it was. She mentioned it because she knew I'd been having some troubles for the past four or five years (at the time) and her doctor said the chance of me having it went up because I had a family member who had it.

Then, there was the day I decided I really wanted that rather large rock by the side of the road. Randy and I planned a quick excursion. It failed and resulted in a badly pinched finger. Turns out that rock was not as small as I thought and would have required equipment to move it.

When I started have problems in my upper back (left shoulder blade, neck, down the back of my left arm), Randy teased me that I'd hurt my back trying to lift that rock with him. We went to a GP doctor who gave me a shot in the shoulder blade, prescribed physical therapy and gave me some drugs. Good drugs. smile Whenever the drugs ran out, I'd call for a refill. No problem. The physical therapist recommended a TENS unit. Insurance paid and covered the replacement pads.

But the pain wasn't going away.Finally, when I called for a refill, the doctor said, "Uhm, it's been nine months. You need to see a specialist." I went, the doctor ordered some tests... and I'm a little fuzzy on what happened next. I think I never went in for the tests. I didn't like that doctor and my feeling was reinforced when there was zero follow-up on the lack of results coming in for the tests I never went for.

I muddled along for a while longer, though by now I really had enough personal data to see the likely outcome was, "You have Fibromyalgia." It's strange how we desperately seek answers, a name for what's going on inside. And yet, when I finally got a doctor to say those magic words, it was just the beginning of the frustration.

Now, I know the name. I know what is wrong. I know I have limits. I know people who don't know me can't see I'm not equally as able-bodied as they are. I don't turn 40 until February, but some days I feel 80. Other days, I forget I've got those shorter limits and do things like I'm 20...and I pay for it for a week.

Hearing about Fibromyalgia in a commercial was kinda cool for a while there. Then I was over-saturated with the Cymbalta advertisements.

Hearing people say, "Oh, I've heard of that. My [insert family relationship here] has it." helped me feel like people would not give me a hard time. That feeling is usually broken by their next sentence, where they say something like, "But she can still work full-time. Why can't you?" Or "But she's got this great exercise program you should try out." Or.. Or.. Or..

Now, I learn{*} there's a paper in the latest Science magazine about a retroviral infection XMRV, which seems to appear... crap. I've tried to write this in my own words about five times now. Let me quote:

We have detected the retroviral infection XMRV is(sic) greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested. The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections.

Source: Whittemore Peterson Institute for Neuro-Immune Disease

I don't understand all the medical-speak in these articles, but I'm seriously going to try to grab a copy of Science for my shelves. This may not change my life, but it could determine whether my son (rare, but still possible) or his (way, way, way) future daughters might find their choices and dreams radically changed by such an invisible disease.

{*} Randy mentioned an article about CFS in the news the other day. I kinda glossed over what he was saying. Sure, that's cool. I know someone who has CFS but she's never available to talk to, so I guess she'll have to find out about the article on her own. Definitely a "hurrah" for medical science. I wonder if he's going to tap me on the head and say, "Duh! Same article!"

Secular Cathedral

I wanted to post about this yesterday, but I needed time to formulate my thoughts and come down from the rafters of frustration. So you're up-to-date, you might want to pop over and read this article.


You back? Good. Are ya pissed yet? Let's talk about this.

I've got around 2000 books in my house, according to my LibraryThing. That does not include an up-to-date cataloging of all the magazines in my house. But, I feel it is safe to say that we are all bibliophiles here. True, we've been selling off our hardback collection and replacing it with the same books in "mass market" (paperback) editions. Lighter, smaller, cheaper. But they *are* still books.

Now, those who know me, know I love technology. I've got two computers (soon to be 3, I hope!), not counting the server which has all our music on it and will someday have all our movies there as well. I start showing signs of DTs if I'm not able to check my email several times a day. We've got surround-sound stereo in our living room, with all our computers, so we can get our geek on and watch a movie.

But when it comes to books, I want paper and ink. I want the feel of a book in my hands. I want the smell of a book. I want to stand in front of my shelves and browse, deciding what to read next. With all our advances in online-shopping, there's still no replacement for "browsing".

When I was little, there was no money for "trivialities" like books. If I wanted books, that meant a trip to the public library. At the time, that was the Stark County District Library. I measure my later childhood years by the shelves of that library. (Of course, returning years later after they reorganized the shelves was rather disconcerting!) Many summer afternoons were spent in that library (soaking up the A/C we didn't have at home!). How many times have I read a book because the title caught my eye while looking at those shelves? How many books did I read because of the monthly displays, celebrating some element of fiction, some breakthrough in science, some person of importance?

My concern over Cushing's choice isn't because I have a child there. My concern is that other schools will jump on this bandwagon before the concept has been proven to succeed---or fail. Why couldn't Cushing choose to keep the paper-and-ink books while testing out the newer technology? Why couldn't they wait a semester or two and see if the teachers and the students (and their parents) approve, before even considering divesting themselves of the real books?

I've shared at home my requirements for an e-book reader: paperback in size, opening like a paperback does. Little cards (like my Nintendo DS uses) hold the books. When not in use, the little cards have little "books" they sit in, on my shelves---taking up even less space than my paperbacks do! There's no need to store credit card data in my device. No need for GPS and wireless capability. Most importantly, there's no risk of losing my entire library when I drop the reader in the tub, while soaking with a good book! I want an Open Source format for the books. I will not support the publishing industry becoming more like the recording industry. Much like my library at home, many of my family members can be reading books from our home collection at the same time---without having to buy multiple copies (which I would have to do right now, with a Kindle or similar readers).

As a crafter, I rely on high-quality color pictures and graphs with detailed information in them to put patterns together. Someday, I hope to have my crochet skills up to par enough to take on Blueprint Crochet (already on my shelves!). [For a sample of what this book looks like inside, there's a preview on ScribD.] Not only does this book have stunning pictures, but blueprints -- in color. And based on one review, there's no point in clicking on the "I'd like to read this book on the Kindle" link because the readers can't handle this kind of book.

I take comfort in my personal book collection, now more than ever. If paper-and-ink libraries could possibly become a thing of the past, at least I'll have shelves of them for my family and friends to reminisce over.

Now running Drupal 5.19

If you notice anything strange or not working, that would be my fault. I've upgraded to Drupal 5.19, but I'm not a pro with this stuff, so I could have made a mistake. Just leave me a comment and tell me it's not working.

Images are missing...

...because I "cleaned up" on the server and apparently got my directories reversed. I'm working on restoring the images in the right place. This means fixing links to the images, not just moving all the images!

If you come across a blog entry with missing pictures, leave me a comment on that post and I'll fix it as soon as I can.

Now, let's see if I can get the security upgrades done without breaking everything!

Whoops and other things

Sorry about the whole "missing blog" thing there... we had a little snafu on our end. It's funny how the ISP expects us to pay the bill to keep this site running. :) No big, huge deal (as I keep telling Randy!). (Note to self, so he'll quit beating himself up: don't forget to run a back-up of the blog and make a cron job to do it automagically.)

I am only just now getting email running again. Somehow, something went kerblooey with Postfix and I ended up having to upgrade it to fix it. But, it is running now and any personal messages should resend without any hiccups. If you did email me at this domain name and don't hear a response in the next 24 hours or so, query me with a fresh email and see if I ever received the original. :)

Life is going on, despite Elijah's so sudden demise. It's times like this when I realize how lucky I am, to have such wonderful people in my life. They're there for me when I need them---something I'm really getting used to! To my amazing friends and family: y'all are spoiling me!

Have I mentioned our housemate on here yet? I know I've been woefully absent... there's just not a whole heck of a lot that is really interesting enough to write, let alone expect anyone else will want to read... but this is something I should have mentioned. Let me re-cap.

Back in late March, a friend connected us with Rowan because we all have a lot in common and the "let's get together one day" became urgent when his roommates of the time ditched him with no warning. We've been struggling to make ends meet and he needed a place... this sounds too good to be true, doesn't it?

The first get-together was great and there was an instant friendship. Fast-forward past moving day and the settling in and here we are today, unable to believe there was ever a time we didn't know each other. Rowan is like the older brother I never had (and always wanted!).

We're working on a garden out in the great room. Since he's also better with a camera than I am, maybe I'll get him to snap some digitals of this "Room of Greenery", so I can upload them to flickr and share them with y'all. We're growing the standard houseplants like pothos, spider plant and ivy, but we're also growing cuccumbers, carrots, red and yellow peppers (from seeds we saved from store-bought peppers we had for dinner!), broccoli, "salad greens" (why didn't we just go straight to spinach?), lavendula angustifolia... Rowan has branched out and is thus far successful with his attempts to start a sweet potato, a citrus tree (well, okay, it's just a seedling so far), popcorn, fenugreek, mustard seed... I know I'm forgetting something. Oh! We have a store-bought parsley and a store-bought mint plant we're keeping alive. We're not so sure about the store-bought basil. So far we've managed to kill one basil (with help from the ferrets), and we're working on the second one. Oh, we also have sage and kalanchoe degremontia. We have so much kalanchoe degremontia, we'll probably be asking people to take it off our hands. I wonder if it's edible at all?

In other news, I've made a personal commitment to participate in NaNoWriMo for the third time---and the first time since the car accident. That'll be some serious writing for me. I don't have the faintest idea of a story to start from. Rowan and I were talking about books and he said he has yet to see a strong gay-male portrayal in science-fiction. Since I can't think of one right off the top of my head (and since I lean towards female protagonists frequently), I figured that was Challenge Number One I'd take on for this NaNo novel.

That means I've got 2.5 months to get anything I want to do done, so that the entire month of November is focused on that 50,000 word limit. I've done the math in the past and I've got two different "daily minumums" to focus on. If I want the weekends off (and I do, since I'm tabletop gaming 2 Saturdays a month and LARPing 2 days a month), I need to get 2381 words per day in. If I count my weekend-days as "available writing time", that number comes down to 1667 words per day. So, if you thought blog entries had been scarce before... Hopefully, I'll just limit myself to short and sweet entries.

If there's anyone out there who still reads this blog, I've got a question for you. If you could choose, would you prefer to read a portion of a short story and then decide whether it was worth paying for the rest or would you rather read the whole thing and have the option of a "tip jar"? I've gone around and around on this and haven't progressed on doing anything about it because one choice (the "tip jar" option) lets my writing loose in the world and could close doors down the road. So, I'm eager to hear from the 3 or 4 people who read here what you'd prefer. While you're sounding off, I'm looking for a good price for the pay-for-the-rest option (which will actually be for the whole story 'cause that's what you'll get when you buy: the whole thing formatted nicely by yours truly).

Oh and a Josephine McKenzie style greeting goes out to any Camarilla members who might be new readers. My email signature on Gmail has this blog on it, so, "Hey all!" Drop a comment and let me know you stopped by.

Hey, it's seven o'clock in the morning. Do you think I should finally go to bed? yawn Yeah, me too.

Good-bye, Elijah

Elijah Benjamin, rest in peace

We lost Elijah during the night last night. We don't know exactly why and we are not having an autopsy done. Randy told me he's felt like he wouldn't have Elijah with him much longer... Elijah is one of three ferrets I had on my "I'll be surprised if they are with us in 2010" list. Still, he wasn't the first I expected to go.

This little stinker has been the hardest of all the ferrets to get good photos of. Almost every picture we have of him where he's actually looking at the camera has "demon eyes" because of how his eyes pick up the flash. This was the best picture of the group.

Rest in peace, sweetie. No more gimpy knee for you! Say "hi" to Maxwell for me.

Syndicate content