Well, I did it--I bought a cane

I finally decided that it's time for me to quit hobbling so much and get something to help me, so I bought a cane. It's ugly and practical, but it's functional. The stairs in my house have been a real pain for a while now, and the butt scoot gets old really fast.

I bought one of those hideous folding canes at the Wal-Mart pharmacy. No sense in spending a lot on a nice cane just yet since I need to get accustomed to it and figure out sizing and if it will actually help on a really bad day (think zombie walk with all joints stuck straight out).

Honestly, I never thought I would be so happy to get a mobility aid. I had kept telling myself that I would at least wait until after this upcoming birthday to give a nice "I showed you" to the doctors who said I wouldn't be able to walk by 25. Well, I can still walk, I just need some help. And, admitting that instead of being miserable is the preferable option.

Anyway, I got home yesterday with my cane and taught myself how to walk with the cane and how to get up and down the stairs with the cane (only for the right hip though--guess I'll have to wait until the left flares to learn use it properly for the left. If they both flare, then, I have no idea how to work that). I am happy to report that the cane is making a huge difference in my ability to go up and down the stairs! My staircases only have rails on one side, so the cane gives me that extra bit of leverage and stability that I need to go up and down. It's still painful, but much less painful than my other methods.

Microsoft Vista

Since I'm on a geeky kick this week, I figure I should devote some page space to Microsoft's newest version of Windows, Vista.

First off, if you're the average user and thinking of upgrading to Vista, I wouldn't recommend it until you've done some research. Not all computers will support Vista (check the minimum requirements listed here), and some programs you want to use may not necessarily work on Vista. I'd especially be cautious if you use a screen reader or voice recognition software as those may not be compatible with the new OS. Dragon Naturally Speaking 9 is not compatible with Vista according to their website. Add to that the recent news about Vista's "fine print" and it's pretty scary:

Vista's legal fine print includes extensive provisions granting Microsoft the right to regularly check the legitimacy of the software and holds the prospect of deleting certain programs without the user's knowledge.

The advantage of switching to Vista for the majority of users will be minimal. Many users with older PCs will see their computer's performance drop since Microsoft has a tendency to make Windows use more and more resources with each new version. I won't be upgrading my home PCs. To me, it's just not worth the cost of the upgrade and the time that will have to be spent on the upgrade and the possibility of having to add more memory (RAM). I like my laptop just fine as is, and I'll upgrade/change when I get a new computer.

I have my reservations about the news that NSA helped Microsoft with Vista. NSA provided its assistance to Microsoft, a private company, for free. So, our tax dollars were spent on government employees spending time and resources on a Microsoft product. From a purely economic standpoint, that really ticks me off. From a more paranoid perspective, NSA has two separate missions that seem to be in conflict with each other, and Bruce Schneier says it best:

Basically, the NSA has two roles: eavesdrop on their stuff, and protect our stuff. When both sides use the same stuff -- Windows Vista, for example -- the agency has to decide whether to exploit vulnerabilities to eavesdrop on their stuff or close the same vulnerabilities to protect our stuff. In its partnership with Microsoft, it could have decided to go either way: to deliberately introduce vulnerabilities that it could exploit, or deliberately harden the OS to protect its own interests.

Upgrading to Vista should be a relatively easy and painless option for those who desire to do so, but, it's not necessary. The new version of the Windows OS should provide some additional IT security advantages, but from my perspective (and that of other security professionals), those security advantages can be circumvented (hypervisor rootkit anyone?).

Color iPod Shuffle

I want one! I've been jonesin' for one of the new iPod Shuffles for awhile now (who wouldn't! They're so much more sexy than my old clunky model), but now they're in color.

If you haven't seen the new ultra-small iPod Shuffle in person, they're really cool. It's just as small in person as it looks on the ads. And, it clips on to your clothes, so it's perfect for the gym. That's much better than my current 1st generation Shuffle that I finally found a sport case for (to avoid the lanyard around the neck carrying method).

Form, function, beauty and style--all in one little package.

Program to get women into Computer Science

Thanks to a post at misbehaving.net, I just found out about a really great idea to get women into Computer Science. Mills College, a women's liberal arts college in Oakland, CA, has an interdisciplinary computer science program geared towards women who already have bachelors degrees in another field. They have a graduate degree and a certificate program. These programs seem like a great way to get women, who may have opted out of the workplace or who are looking for a career change, into technology.

The interdisciplinary approach of a liberal arts college is a great way to look at technology (I'm a little biased as I hold a Computer Science degree from a liberal arts school) without pigeon-holing everything into the purely technological framework. This is an area where I think women can really make a difference by their different views of the world. It's only made better by bringing in women from other academic backgrounds.

Imagine the power a psychology undergrad degree combined with a computer/technology master's would bring to human computer interaction. This is the wave of the future.

Caffeine: It's not just for coffee anymore

A molecular biologist, Robert Bohannon, in conjunction with flavoring experts, has created caffeinated doughnuts and caffeinated bagels. (Via MSNBC)

Love caffeine, but hate coffee?
"Buzz Doughnuts" and Buzzed Bagels each contain the equivalent of about 2 cups of coffee--without the bitter coffee taste. Bohannon is said to be shopping the idea to several bakeries, so your new source of caffeine may not be far off. But beware, more than likely, these pastries will pack a mighty punch since fat and sugar are typically used to add more flavor to less than savory foodstuffs.

I, for one, cannot wait to get my caffeine fix from starchy, sweet goodness.

Color Personality Test

I love online personality tests. I rather enjoyed the color one--it's super easy. Just pick the colors that make you feel best. I realize that the answers are typically very vague so that people will identify with them, but it's all in good fun.

Circumstances are forcing her to compromise, to restrain her demands and hopes, and to forgo for the time being some of the things she wants.

That part is dead on. I'm an artistic person trapped in an IT job. I want to go back to school, but I can't because of the financial (and thus marital) strain it would cause. I want to change careers, but I'm having a hard time doing so.

My results:

Disgruntled+Ladye took the free ColorQuiz.com personality test! "Seeks affectionate, satisfying and harmonious rela..." Click here to read the rest of the results.

Disability Carnvial #7

Yet another disability carnival is up at Disability Studies, Temple U.

Lots of interesting stuff. Go read it!

Spain Makes Sense of Fashion

The Washington Post reports that Spain's government has decided to implment a five year plan to standardize women's clothing sizes. Several major designers have agrred to take part in the program. (hat tip: Broadsheet)

The program, designed by the Health Ministry, will also prevent those companies from using window displays featuring clothes smaller than a European size 38 (10 in Britain, 8 in the United States). They will have five years to phase in the change.

The Spanish Health Ministry seeks to establish beauty that is not "removed from the social reality of a community," and designers should "promote a healthy phsyical image that conforms with the reality of the Spanish population". In order to determine what real Spanish women are, "the ministry plans to measure 8,500 Spanish girls and women between the ages of 12 and 70."

It's really great to hear that a country is taking steps to stop this never ending search for size 0. Limiting displays to a minimum of a size 8 (US) is a great place to start. Any more a size 8 is viewed as "big" by the fashion industry. It's disturbing, especially when the average American woman wears a size 12.

And really, how great would it be to know for sure that a size 8 is a size 8 everywhere. I hate that I can wear anything from a size 2 to a size 10, depending on the designer. Even within the same brand, I can fluctuate between sizes (though in a smaller range). I don't know how Spain plans to implement this plan or keep the designers in compliance, but it's a great place to start. It's definitely better than the Council of Fashion Designers of America regulations.

Kathleen Turner on Rheumatoid Arthritis

The Washington Post has an interview with Kathleen Turner, "Arthritis won't take center stage: actress Turner".

I was directed to this interview by someone on the Arthritis Foundation community bulletin boards. Everyone was very happy that Rheumatoid Arthritis was getting publicity. It's great that famous people with illnesses speak out for further action and awareness(Kathleen Turner, Michael J. Fox), but one part of the interview really stuck out:

I think if I were ever to have acute relapse again, I think that would make me suicidal.

This really bothered me. It makes people with RA (and by association other types of arthritis) seem weak and people to be pitied. There are enough battles to fight with arthritis: awareness, specifically. Most people, upon hearing that you have arthritis, say "Oh, yeah, I have arthritis in my knees too. Big deal".

I believe that Kathleen Turner's efforts would have been better spent discussing RA and how it affects the lives of those diagnosed with the disease.

National Sanctity of Human Life Day -- What? I must have missed something.

President Bush declared this past Sunday, January 21, National Sanctity of Human Life Day.

From the Whitehouse press release:

Among the most basic duties of Government is to defend the unalienable right to life, and my Administration is committed to protecting our society's most vulnerable members. We are vigorously promoting parental notification laws, adoption, abstinence education, crisis pregnancy programs, and the vital work of faith-based groups. Through the "Born-Alive Infants Protection Act of 2002," the "Partial-Birth Abortion Ban Act of 2003," and the "Unborn Victims of Violence Act of 2004," we are helping to make our country a more hopeful place.

Of course, they only care about the babies...

• Not the thousands of innocent Iraqi civilians that have been killed during the war in Iraq


• Not the detainees in Abu Ghraib who were humiliated


• Not the detainees that have been tortured

The Daily Kos has a good post on this here.

Blog for Choice Day: Why I'm Pro-Choice

Today is Blog for Choice Day, and I join in with many other bloggers to share why I am Pro-Choice.

The government has no right to exert control over a woman's body. The government does not own me or any other woman. It has no right to tell me what I can and cannot do to myself (don't get me started on the "pre-pregnant" fiasco, among other things). Trusting women to do what is best for them and their families should be left to the individual, not the government.

It's all about trust. Women are not to be treated as second-class citizens. We have the right to control ourselves, our bodies. We are adults, grown women, who have a right to make our own decisions. This is not the middle ages, women are not property. Do not treat us as such.

Women make every other choice regarding their health, so why remove this choice? Safe access to medical procedures is preferred to the alternative--back-alley coat hanger abortions will happen because there is a need for this service.

I blog this as a Pro-Choice Christian (yes, we exist). No matter what your personal religious views on the subject, your individual beliefs should not be held up as law for others.

Comfy New Shoes

One of the things I really hate about my arthritis is that I can no longer wear the majority of cute shoes. When my PA was in remission, I was a high-heel fiend. Now that my feet have permanent damage, and my hips and knees are following suit, I am relegated to the world of "sensible shoes".

However, every now and then, it is possible to find cute shoes that also provide the needed support. Case in point, my new shoes (made necessary due to my 6 month old puppy destroying my trusty Skechers): Merrell Plaza Bandeau. They're not the best looking shoes in the world, but compared to the majority of "comfort" shoes, they're quite cute. And, they're oh so comfy--the heels are like little trampolines. Now, if only they made them in a dark brown, non-suede leather.

Snow!

It's snowing outside in the, up until recently, unseasonably warm weather locale of the Balitmore/DC region.

Snow is so beautiful--too bad I'll have to go to work tomorrow, I'd prefer to sit inside, drink cocoa and look out at the wintry landscape behind my townhouse. Unfortunately, we aren't supposed to get much snow (1", maybe), and my favorite thing about snow is watching my dog play in it (and we have a puppy who's never seen the stuff). It's highly amusing to watch my normally somber cocker spaniel bound and leap and burrow in the snow.

Remicade Experience

Before I went in for my first Remicade infusion, I was searching the Internet for individual experiences with Remicade. It seems they are few and far between. So, I thought I'd tell my experience here.

First off, everyone's experience varies--as evidenced by the many methods of dosing and delivering Remicade I found on the Internet. Some doctors require their patients to take benadryl before an infusion. Others do not. Some put benadryl in the infusion with the Remicade. My doctor, it turns out, does not give any benadryl unless you've had an allergic reaction in the past.

Nervous and now, freaked out...
The nurse who checked me in turned out to be Perky Nurse Who Can't Hit My Veins To Save Her Life (Perky Nurse, for short). So, I'm freaking out because, if she comes at me with a needle, I swear I will scream bloody murder. She took my vitals (blood pressure abnormally high for me--go figure) and led me to the infusion room. Thankfully, the infusion nurse was there and saw the look of horror on my face. After Perky Nurse left, she assured me that she would be doing the infusion. I'm thinking Perky Nurse instills fear into the hearts of some of the patients.

Eat before you go
My husband came with me to the doctor after hearing the experiences of a co-worker who takes Remicade for Crohn's. I didn't eat beforehand, and the nurse told me that I had to eat (because in her experience, some people have reactions if they don't eat). Okay, so my husband went to get us some breakfast. The doctor came and saw me (and thankfully avoided mashing on my joints since he had seen me 2 weeks prior), told the nurse how many vials to use (2), and then returned to his office. I ate my breakfast, then the nurse put in the IV. Remarkably, it wasn't that bad--she got my vein on the first try. Granted, she went into a vein in my hand, not my arm, but I much prefer one stick to several.

Wear warm clothes
Once the IV started, I was freezing. The already cold room felt like a freezer once the cold IV fluids started going. The nurse piled lots of blankets on me, and I was finally able to get reasonably comfortable. I read my book, talked to the other patients, and played a game or two on my Blackberry. All in all, it took about 4.5 hours--check in to vitals check.

You're getting sleepy
On the way home from the infusion, I felt fine, but gradually I got more and more sleepy. Fatigue is more appropriate. We got home, and I dragged myself up the stairs to bed where I slept for about 3 hours.

The waiting game
And now, I wait. I wait for some sign that the drug is working. The nurse and other patients told me how wonderful Remicade is. How some patients respond immediately. How the day after their first infusion they went roller skating.

As usual, I can't really tell that much of a difference. My swelling has gone down (I can see the bones in my feet!), but the pain still lingers. My hip isn't grinding as much, but it still happens. I hope that I will respond better over time, but I am cautious in that hope.

The day after the infusion, I was able to go out for lunch, go to the mall, and still feel well enough to clean house and watch movies. But today, 2 days past infusion, I feel exhausted and weak, and I'm in pain. My brain feels like mush, and I've already broken down in tears several times today. I can only hope that things get better.

Passwords

Anyone who works in IT security or has ever worked the helldesk, oops I mean, helpdesk, knows that users don't choose good passwords. That's why we have these lovely complex password policies that the average user hates (must have at least 8 characters, and must contain a capital letter, a lower case letter, a number and a special character). The recent MySpace phishing episode shows just how bad the average users' passwords can be.

Users tend to use things that they won't foget, a few examples:

• Their name


• Their username


• Words in the dictionary


• Kid's name


• Spouse's name


• Pet's name


• Birthday


• "password"


• Sequences of keys on the keyboard like "qwe" or "asdf"

The Dilbert comic strips for the past 2 days have been very spot on with "Dogbert's Password Recovery Service". Take a look at them here and here.

This article by Bruce Schneier is a good overview of secure passwords.

Tsunami after-effects: Women sell kidneys to survive

This is very heartwrenching news. (via Broadsheet)

"During an inquiry by the revenue divisional officer, we found about 35 women of Tsunami Nagar (a temporary shelter) have sold their kidneys," Ranvir Prasad, an official of Thiruvallur district in southern Tamil Nadu state was quoted as saying by the Indian Express newspaper.

...

The women were offered up to 100,000 rupees (2,256 US dollars) for a kidney, but were often paid less than half the sum and ended up ill due to lack of post operative care, PTI news agency reported quoting unnamed local officials.

The women told Sangeetha that they were forced to sell their kidneys as they had no other means of survival.

They said the temporary shelters built for them were too far from the sea and they could not sell fish on the sea front as before. Their menfolk had also stopped fishing because of the distance and whiled away their time drinking and put pressure on the women to pay back family debts and keep the household running.

Maria Selvam, a leader of the Tamil Nadu Fishermen's Association said: "Earlier one or two people sold their kidney, but now almost two people sell every week."

Stairs, Mobility, & Family Guy

The other night, my husband and I were lying in bed watching TV (Family Guy), when Stewie climbs up the stairs to go to bed (singing "So Long, Farewell" from the Sound of Music). He does this by going backwards and sitting on a step, then using his arms to pull himself up to the next step.

Now, normally, this wouldn't really have any sort of impact on either myself or my husband, but life's been a little different lately. Namely, I'm having a lot of difficulty climbing the stairs in our 3-story townhouse*. Going down the stairs isn't so bad--I've pefected the "butt scoot". But, alas, going up the stairs has been more difficult since my knees and hips have joined in the arthritis party going on in my body.

After this Family Guy scene, my husband turned to me and said, "Hmmm... I wonder if that would work for you." I had been thinking the exact same thing and said so. We then spent a good while laughing about finding mobility advice from Family Guy, the last place you would ever think to look.

* My 3-story townhouse wasn't an issue when we bought it 1.5 years ago. As my knees and hips weren't affected at the time.

Not a good week (and it's only Monday)

I'm working 10 hour days this week to make up for the time I'll be taking off on Friday for my infusions. Unfortunately, my body doesn't agree with this decision.

I fainted after lunch today. It's been a long time since I've fainted. I didn't even notice that I'd done it. I was sitting in a chair in the conference/lunch room when a muscle spasm in my back made me lean forward with the pain. The next thing I knew a few co-workers were asking me if I was ok and saying I looked really flushed. I just laid in the floor for a few minutes, drank some water, then went back to work. I still don't feel terrific, and my husband had to drive me home because I'm so weak and fighting nausea.

I used to faint quite a bit. I was diagnosed with dysautonomia when I was in college and prescribed florinef to control the fainting spells and blackouts that were pretty frequent then. After a few years on the florinef, I was able to wean myself off and replace drugs with cardio workouts to help regulate blood pressure.

I'm guessing that my blood pressure has dropped below normal again (normal for me being around 80/70) since I've been fairly inactive of late (just checked it: yep, it's low--91/52). I wonder if there is a connection between dysautonomia and arthritis (or autoimmune diseases in general). Arthritis and dysautonomia symptoms both started to really bother me when I was about 16 years old (I distinctly remember being upset that my parents wouldn't let me drive because I had been passing out at random).

I haven't seen a neurologist or cardiologist to treat the dysautonomia since I left Birmingham. I'd prefer to avoid adding yet another doctor to my rotation of doctors visits. It's hard enough to see the rheumatologist all the time, especially since I'm paid hourly and don't have sick leave or vacation leave.

Maybe this is just a fluke and it won't happen again any time soon. Cross your fingers for me.

Gasp! It is possible...

I stepped on the scale this morning, and...

134.5

That's 3.5 pounds lost, even after the second round of pred. I am shocked.

This weekend I took some of my clothes to the tailor (to hem them, because, well, high heels just aren't happening any more--sigh), and previously slightly tight slacks are now hanging nicely. It's a good feeling.

The world didn't end

I talked to my boss about needing time off for my Remicade infusions. He was totally fine with it. He's even fine with me working from home afterward if I don't feel well. And working extra hours earlier in the week to make up for the loss of pay.

He didn't even ask for what's wrong with me. He just asked that I put a note on the calendar stating that I'll be out of the office--no explanation necessary.

So, overall, it went better than I expected. And, I'm relieved.

Prednisone, How I Love/Hate You

I just finished prednisone taper #2 for the year 2007 (not a good track record!). I love prednisone, I really do. it makes me feel so much better (and makes my fingers skinny... I mean normal-sized). I also hate prednisone. Aside from the weight gain and other side effects, coming off of it is rough, especially if your arthritis isn't under control (like mine now). Once you get on long term prednisone, it's very difficult to get off, so tapers (6 day course of pred dropping in dosage every day) are the preferred method of dosing.

The first day without prednisone (when disease is not controlled) is somewhat like waking up with a hangover. The inflammation and swelling that had been kept at bay begin creeping back. Morning stiffness worsens. All you want to do is sleep some more.

More troops...

92,000 troops to be exact. Of those 92,000 new troops, 21,500 will be going to Iraq.

Two questions:
1. Where are they going to find these 92,000 new service members?
2. What evidence is there that 21,500 new troops in Iraq will make a difference?

Wireless Network Security - Laws in NY & CA

Network World has an interesting article about new laws popping up or being considered regarding wireless network security.

Earlier this week I posted about just how easy it is to gain access to an unsecured wireless network. It's good to see that awareness of this security issue is getting more attention.

I have mixed feelings about the laws though.

Medical ID Bracelet

Well, I finally ordered a medical ID bracelet. Since I take so many meds and have several drug allergies and several health conditions, I decided it was time. I had my ID charm engraved with "On Mult Meds - See Wallet Card". That way, there's not a ton of info about my health hanging on my wrist, but would alert EMTs or first responders that I need special consideration. (Of course, now it will be my luck that if something does happen, I won't have my wallet on me).

I really struggled to find a style that I liked (and didn't scream "Look at me, I'm ill!"). But, thanks to Chronic Babe, I found the Beadin' Beagle and ordered this beauty. Now I just have to wait a few weeks until it comes.

From my discussions with people on the Arthritis Foundation's boards, no one really wants to wear one of these bracelets, but many of us should. So, let me take this opportunity to say it:

If you have a chronic illness (especially an invisible one), take multiple medications, have drug allergies, or take prednisone or immunosuppresants, it's a good idea.

Another site with pretty medical ID bracelets is Lauren's Hope.

Ridiculously expensive medications and sundry crappy stuff

I knew my happy dance couldn't last forever--though, remarkably, my fingers are still really small. Who knew that I have knuckles??? My "skinny" wedding rings actually slid completely off of my finger earlier today. But, I digress.

Ridiculously expensive medications
Well, at least I'm guessing that my newest medication, Remicade, is ridiculously expensive. Of course, my doctor's office and my insurance don't know exactly how expensive this will be, but they're guessing I'll hit the out of pocket cap in 3-4 treatments. Then everything is covered at 100%.

Not that paying up the cap is that bad--I know that I have really good insurance through my husband's employer. But something a little more specific would be nice.

Sundry crappy stuff
To top it off, I was informed today that not only do I have to go spend a couple of hours (most likely 3 hours) in the doctor's office to get the infusion, I also have to see the doctor when I come. With my previous job where I had sick leave, no problem. But now, I'm a contractor, so I have no leave, and I'm paid hourly. So, 3 hours of transfusions plus another hour or so to see the doctor. It takes an hour or so, apparently, because they don't actually make an appointment for you, they just "work you in".

Work you in == Last patient we can slide in before the doctor goes home or goes to lunch

Now, I understand that I can't get my infusion at 3:00 p.m., but I was under the impression originally that it would take about 2 hours. Now they tell me the whole process will take at least 4 hours. Add to that my commute from work to the doctor's office 20 miles away. So, about 5 hours of my time for treatment. At least the really intensive part of treatment will only be 3 treatments over a 8 weeks, but it's still a lot of time and money out of my pocket. Then maintenance every 6-8 weeks after that (again, they're not too specific on which camp I'll fall into--that whole disease varying from person to person thing).

I really have to inform my employer now. That's just too much time for me to be out while they're considering making me a full-time employee. The company is with is pretty flexible with remote access and working from home. So, if I can just figure out a way to get network access from the infusion room, I think I can work out a deal.

I never thought I'd say it, but I'm going to miss my shots.

Happy Dance!

I was able to wear my original* wedding rings today! It's been several months since I've been able to fit them over my swollen fingers ("Sausage digits" as doctors refer to them--no, I'm not kidding).

It's the little things in life.


*I have 2 sets of wedding rings, the original and my "fat rings" which are 1 full size larger than my non-swollen fingers.

The Fashion Industry, Models and Regulations

Over the past year, there has been a decent amount of publicity regarding how thin models are and what to do about it (as well as the deaths of two South American models last year). The Council of Fashion Designers of America met recently and discussed proposals for the fashion industry to respond to the growing concern and restrictions put in place in Madrid and Milan.

According to a New York Times article, no requirement of meeting objective measures of health were discussed at the meetings. A nutritionist consulted by the CFDA seems to think that BMI (a standard measure of healthy weight) is not fair to all:

“It’s not so much about whether they can be 18 [BMI] or higher and still look fabulous,” she said. “I’m not for mandating certain B.M.I.’s because I don’t think that is fair.”

The Academy for Eating Disorders, an international medical organization, insists that age and height requirements for models are necessary.

From the New York Times again:

"We believe the fashion industry should take responsibility for the health of its models,” Dr. van Furth said. “The way they are presenting their guidelines really shows they are not acknowledging the seriousness of the problem of eating disorders at all.”

...

According to the academy’s guidelines, models should be at least 16 years old and have a body mass index — based on a formula of height and weight and known as B.M.I. — greater than 17.4 for female models under 18 years old, or 18.5 for models over 18 years old. For a 5-foot-9 model over 18, that would mean the weight requirement would be 126 pounds.

I think the Academy of Eating Disorders has the right idea, but the fashion industry isn't really willing to take that step. The chief executive of the National Eating Disorders Association, a U.S. based prevention group, hits the nail on the head, saying, “Their response looks like a P.R. cover on a real problem.” I miss the days when models looked more like real women, like Cindy Crawford.

There are no easy solutions, and eating disorders will still exist regardless of the fashion industry's take. But presenting healthy images of women, not ridiculously thin women who appear to be on the brink of death, would be a huge step in the right direction. I fail to see how a 5'9" model over 18 who weighs 126 pounds is unacceptable to the fashion industry.

Centex Homes - Universal Design Showcase Home

I was reading the Washington Post this weekend, and to my surprise there was a great article on Universal Design in homes. Specifically, Centex Homes has built a demonstration house in Prince William County, Virginia. I really enjoyed that the article talked about universal design making life easier for everyone, not just PWDs. Once more people realize that, universal design will become more commonplace.

Pictures and more details on the home can be found here.

How Secure Is Your Wireless Network?

For those of you who aren't IT/computer security savvy, the New York Times has a good article about just how easy it is for someone to see almost everything you do on an unsecured wireless network. (hat tip to Bruce Schneier's blog)
From the article:

We met (John, the camera crew and I) in a Manhattan Wi-Fi coffee shop. Turns out there was absolutely nothing to it. John sat a few feet away with his PowerBook; I fired up my Fujitsu laptop and began doing some e-mail and Web surfing.

That's all it took. He turned his laptop around to reveal all of this:

* Every copy of every e-mail message I sent *and* received.

* A list of the Web sites I visited.

* Even, incredibly, the graphics that had appeared on the Web sites I had visited.

None of this took any particular effort, hacker skill or fancy software. Anyone could do it. You could do it.

Just to make it clear, the tools needed to do this are available for free on the Internet. Certain sites/activities will not be viewable to the naked eye (encrypted sites such as banks, financial websites, some web-based e-mail)--if there's the padlock image in the bottom status bar of your browser or the site begins with https:// instead of http://, all information sent that way will be encrypted, that is, difficult for someone to view (though, it is feasible that the encryption could be broken, it would require far more skill to do so).

For those of you using wireless networking equipment at home, there are some basic things you can do:

• Use the highest level of encryption available. WPA2 is the best currently available. WPA is next. WEP is easily broken, but will keep most casual users from intercepting your communications.


• Change the default device name (and administrator user name and password) for your wireless equipment (router or access point) and turn off SSID broadcasting. All wireless routers and access points come with a default name, examples include: Linksys, Netgear, Dlink. Disabling SSID broadcasting will keep your network from being widely advertised to the casual observer.


• MAC address filtering. Every network card ever made has a unique ID, a MAC address. Most wireless equipment will allow you to specify that only certain MAC addresses can access the network. It's not failproof, but again, will keep your network from being the easiest one to get into.

About.com has these suggestions, and a few more--including directions on how to do them.

Disclaimer: These are suggestions for making your wireless network more secure. They in no way make your network "hacker-proof" nor will they keep all people from being able to see your communications. These are just some steps to keep your network from sending all information in plain text.

Failing

I've never been one to fail. In all of my years in school, I don't think I ever failed anything. Perhaps that is why failing a drug is so disappointing.

I have officially "failed" Enbrel, a biologic response modifier. Almost a year of taking the stuff, and I'm still just as miserable as before, especially in this nasty fluctuating cold/warm, wet weather. I've barely been able to walk from my car to the office for the past few weeks. I gave in to the prednisone urge (there goes my diet), though I'm trying to keep doing tapers instead of getting stuck at 10-20 mg a day for several months (like last year).

This is of course after having failed all of the first line drugs for rheumatic diseases/spondylarthropathies (NSAIDs, plaquenil, azulfidine, methotrexate monotherapy). So, I've not just failed one medication, but a handful of them. Unfortunately, there's nothing I can do to keep from failing the drugs. If it were a class, I would study harder and for longer periods. I can't make my body respond.

I went to see my rheumatologist on Friday, and he wants to start me on Remicade, another biologic that is given via IV transfusion. So, lucky me, I get to spend a couple of hours in his office getting an IV transfusion of the stuff 3 times over the next month and a half, then once every 8 weeks (as maintenance). I'm optimistic, but after failing, I am hesitant to hope for the best. After all, if I fail this one, I don't have many more options left.

This also raises the question:
How do I tell my boss about my arthritis and the future treatment that it will entail?

I don't really know the answer yet, but it's obvious that I will have to discuss the situation with him since I will be needing time off from work for the transfusions and associated doctor's visits. All this comes as they are considering bringing me on board as a full time employee from a contractor.

The timing is impecccable.

Ashley X

Numerous other bloggers have covered this story much more in depth, so I will defer to their better analysis in the links below. The gist of the issue is this:

Ashley X, age 9, has a mental impairment, static encephalopathy, which leaves her mental development stopped at approximately that of a 3 month old. From the "Ashley Treatment" website:

Now nine years old, Ashley cannot keep her head up, roll or change her sleeping position, hold a toy, or sit up by herself, let alone walk or talk. She is tube fed and depends on her caregivers in every way. We call her our “Pillow Angel” since she is so sweet and stays right where we place her—usually on a pillow.

Ashley is a beautiful girl whose body is developing normally with no external deformities; see photos. She is expected to live a full life and was expected to attain a normal adult height and weight. Ashley being in a stable condition is a blessing because many kids with similarly severe disabilities tend to deteriorate and not survive beyond five years of age.

Ashley is alert and aware of her environment; she startles easily. She constantly moves her arms and kicks her legs. Sometimes she seems to be watching TV intently. She loves music and often gets in celebration mode of vocalizing, kicking, and choreographing/conducting with her hands when she really likes a song (Andrea Boccelli is her favorite – we call him her boyfriend). She rarely makes eye-contact even when it is clear that she is aware of a person’s presence next to her. Ashley goes to school in a classroom for special needs children, which provides her with daily bus trips, activities customized for her, and a high level of attention by her teachers and therapists.

Ashley's parents have pursued a path of invasive medical procedures that will stop Ashley's development and keep at her current body size for the rest of her life. The procedures include a hysterectomy, removing the "buds" of her breasts, and hormonal treatments.

Overall, I find the parents' actions to be those of convenience for them, not what is best for Ashley. I can understand them wanting to make things simpler, but this is Ashley's life and body, not theirs.

Further (and better) analysis from a feminist and disability rights perspective:
The Gimp Parade: "Frozen girl" discussed on TV tonight
Did I Miss Something?: It begins with Ashley.
Wheelchair Dancer: Human Rights

Baltimore/Washington Driving Rant

Attention driver of the beige Subaru Forester today around 4:40 going Southbound on the BW Parkway just south of the beltway:
The speed limit on the BW Pkwy is 55, not 50. The real speed of most drivers on this road is around 70. In light of such information, it would behoove you to drive in the right lane, aka the "slow lane", to avoid getting tailgated, or worse, rear-ended on your daily commute. Slamming on your brakes only exacerbates this problem. I cannot tell, when approaching at approximately 65 miles per hour, that you are driving like a 90 year old grandmother on this busy road. By slamming on your brakes, you dropped to a dangerous 45 miles per hour, in the FAST LANE. Go with the flow of traffic or take a different route. Do not subject the rest of us to your poor driving skills.

Attention drivers leaving downtown Baltimore via 295 S:
Yes, there is construction. No, you do not have to slow down to 15 mph just to read the signs. This construction has been going on for quite some time. I see some of your cars every day on my commute home. The strange traffic pattern should be normal to you by now. Learn to deal.

"Suited for politics" or The Baltimore Sun shows its true colors

Today when I came into work, I took a look at today's Baltimore Sun in the break room. On the front page is this headline:

Suited for politics: As Nancy Pelosi becomes the first female speaker of the House, she's already winning votes for her fashion sense

Now, this isn't the only article the Sun ran about Pelosi today, a quick search of their site lists at least two others, yet the fashion article is the one on the front page.
Strangely enough, the last paragraphs of the article addresses the issue that female politicians are covered differently by the press.

Public interest about style for female leaders may be unavoidable, though. No less a political player than Hillary Rodham Clinton, whose hairstyles have been dissected endlessly since before she became first lady in 1992, told National Public Radio last month, "They [the voters] get to take a measure of you. They get to decide whether they like your position on energy or whether they like your hairstyle. It's all fair game."

Osolind, of Re:Invention, says female politicians "have good reason to long for the day that they can silence the conversation about their clothes."

"We should be focusing our attention on Pelosi's diplomacy and new Congress agenda," she says.

I long for the day when women in leadership positions are analyzed for their skills, not their style.

Prednisone sucks

Well, looks like a short taper of prednisone (a la a medrol dosepak) isn't going to cut it. Around this time of year, I tend to become dependent on the stuff, so I suppose this year shouldn't be any different. I guess I'll just have to be extra vigilant on my dieting to avoid gaining any more weight.

Oh well, a little weight gain is better than hobbling around like an 80 year old.

Buttons made me cry

It's amazing how something so small can make you feel completely helpless. The simple act of buttoning up my (brand new) crisp white dress shirt this morning proved too difficult of a task to perform. My fingers turned to immovable red sticks incapable of putting button through button-hole. My husband, being ever so observant for 6:00 a.m., realized my struggle and buttoned the shirt for me. I cried.

This is the first time over the course of my illness that I have been unable to button up a shirt. Other things have been difficult or impossible for me to do (open jars for instance), but dressing myself has not been a major issue. I am grateful for having a caring husband who saw my need and took care of it, but I am upset that I could not handle the task myself. It is demoralizing to realize that, had he left for work earlier, as he usually does, I would not have been able to manage.

Kicking off my weight loss plan...

I know no one else really wants to read about my dieting/weight loss obsession, but in the past I've found that journaling/logging my progress helps me keep an eye on things.

The Goal:
Lose 10-15 pounds in the next 6 months. (Really, to get as close to my pre-prednisone weight/body as possible)

Goal Weight: 125-130

Current Stats:
weight: 139
body fat: 30%
bust: 37
waist: 27
hips: 37
current size: 6

Pre-prednisone stats:
weight: 122
body fat: 27%
bust: 36
waist: 26
hips: 35
size: 4

Things I've done so far:

• Bought a pedometer (16,000 steps today! Hooray for shopping trips!)


• Started a food diary last week


• Made working out a real appointment on my calendar so no one at work can schedule a meeting for me during my workout.


• Started giving away my baked goods instead of keeping them in the house

Resolutions

It's that time again--New Years Resolutions. So, here's my list.

• Lose 15 pounds. I put on 15 pounds this past year because of the prednisone, so now that I am off the stuff (for all of a day right now), I want to lose that weight.


• Be less negative. I've never been an optimistic person, but it seems the past few years I've gotten even more negative. So, I don't want to turn into a perky positive annoying chica, just a little more on the half-full side of things.


• Keep my house cleaner on a daily basis. This is a big one for me. I hate cleaning, but I hate spending an entire weekend to clean my house even more. So, if I clean up as I go, things won't be nearly as difficult for me to clean.


• Take my medicine. This is a no-brainer, but it's really hard to remember to take a medication once a week. Sometimes it slips my mind.

That's about it. Happy New Year, and good luck keeping your resolutions!