Degenerative Drivel

Here Comes the Sun

2009-06-08T16:27:00.003-05:00

As fond as I am of a beautiful spring day, there's a part of me that cowers a bit when the sun peeks out in the springtime. Gone are the months of long sleeves and grey skies, and now it's time for me to begin my vampire routine once again.

Everyone's concerned about "too much sun" these days, but for me, even a small amount can leave me nauseous, achy and exhausted. Since the weather is becoming warmer (and will soon venture into "muggy"), long sleeves don't really do it anymore. My strategy for coping with the sun is threefold: 1) avoidance (stay inside/in the shade), 2) modified wardrobe (long-sleeved cotton gauze or linen shirts, or special UPF jackets), or 3) heavy-duty sunscreen (A combination of Clinique's Super City Block for the face, and Blue Lizard for the body).

The avoidance route is my usual weapon of choice. The trouble is, as my kid gets older, I want to spend more time participating in real-life activities with him. He got a tennis racket for his birthday this year, and I can teach him some of the basics. But our local tennis courts, while lovely, are completely unshaded. The same goes for bike rides in the park, field trips, etc. Also, since we can't afford landscapers on our budget, there's work to be done in the yard, and hubby can't do it all by himself.

I do have a jacket from Sun Precautions, but it a) can be hot, b) wrinkles terribly, and c) being white, is always a bit grungy -- some stains will just not wash out. Their stuff is also incredibly expensive (the jacket runs just under $100). I have just ordered another jacket (in a different color this time) from a similar company called Coolibar, which is less expensive. Reviewers seem to like it, so we'll see how it compares.

I do like the Blue Lizard sunscreen. Because it uses titanium dioxide and zinc oxide, it is actually a physical block to the sun. It goes on pretty easily (it is a little bit oily), but it does tend to leave a white residue on my dark clothes, on the arms of my desk chair, on the armrest in the car, etc. The residue is not too bad if I use exactly the right amount -- but that's hard to get right. Also, given my reaction to the sun, I am always nervous in just sunscreen. I don't worry too much about its effectiveness on a typical weekday -- it covers me just fine for the walk to and from the car, etc. But on a weekend or holiday, when I'm likely to be outside a lot, I feel kind of... exposed going out with just this stuff on my arms and/or shoulders. Swimming with it on last summer was especially scary.

I don't know the answer to this issue, but it's probably the #1 biggest impact that RA/lupus has had on my life. Joint pain is mostly controlled by medication, and I have mostly gotten used to asking for hubby's help with jars and such -- but having to plan ahead just to walk outside is a real pain.

Word of the Day: Career

2008-07-09T15:12:00.002-05:00

Today's Word of the Day is career. Definition:

to go at top speed especially in a headlong manner

Seems exceedingly appropriate for me, lately, and the many many months since I have updated my blog. My career (chosen line of work) has been careering forward of late. In January I accepted a new job as head of youth services at a different library -- launching a new job, in a new place, complete with commute and many learn-on-the-job woes. I have spent most of the five months since careering around the place, trying to keep up, putting out fires, and never quite seeming to find the time to find my feet, as it were. Add to that the tripling of my commute time, and increase in stress stemming from new responsibility, and my free time seems to have vanished as well.

Fortunately, my family is patient with me, and I think my friends have forgiven me for my neglect. I'm beginning to surface, at least temporarily, and giving thoughts to rebuilding my good fitness habits (5 days a week at the YMCA has slipped to two or three, though thankfully I still manage to make it to Zumba most of the time), catching up on sleep, eating more healthfully and organizing my office. I know if I'm even able to think of those things, I must be recovering from the chaos.

In good news, arthritis trouble has been minimal since I started on Imuran last August. I am grateful for that -- the state of my hands last summer had me very scared indeed. Hooray for modern medicine!

Retrospective

2007-10-12T19:57:00.000-05:00

Today's Word of the Day is "retrospective." I have been feeling retrospective, as I catch up with months of unread blog posts, old magazines, and movies I never saw (but my name finally came up in the hold queue at the library). It's an odd feeling, being so busy. Like living one's life, only three months late. I check out books from the library, but never get around to starting them until I'm on my third renewal. Find myself downloading pictures from the digital camera that are from the peak of midsummer. This morning, I hauled out from the spare bedroom the crate of winter clothes that I never got around to putting in the basement last spring, because now it's time to wear them again.

Sigh. I'm going to bed now, so I won't stay up too late (another recent habit -- as if I could fit the day I didn't have time to have into the hours after I ought to have gone to bed).

Huzzah!

2007-10-11T20:50:00.000-05:00

I did a row today!

Just one, but one is infinitely better than none.

It was also a bad knee day. I'm not sure of the cause; it could have been any one of three things (or maybe all of them):

the temperature dropped 40 degrees in the last 3 days
The Zumba classes I started taking this week (so much fun! I hope I can do it without having ongoing knee problems)
wearing 3 1/2 inch heels and walking around in them all day

One of these factors would probably not have been a problem, but all together, they made for an owie day.

In good news, I have lost 17 pounds since August.

Still knitting

2007-10-10T22:09:00.002-05:00

Little by little. My new goal is to knit at least one row every day. I have not managed that at all this week.

Froggie's Knitting Club

2007-09-27T23:07:00.000-05:00

Today's entry in the knitting glossary for knon-knitters is frog. If you make a mistake in your knitting, you have two choices. You can knit backwards and undo the stitches until you get to the point of your mistake, and correct it (known as tink-ing, for knit spelled backwards), or you can frog it (rip it, rip it, rip it).

I have frogged my clapotis twice, and am on incarnation #3. So far, so good. I am going slowly, as I've been so busy at work I've barely managed to eat lunch, much less make time for coffee (pronounced "knitting") breaks. It's coming along, though. I hope to make some more progress this weekend.

Want a Froggie button? Here they are!

Knitalong Cassidy

2007-09-24T21:39:00.000-05:00

Yesterday was the first day of the Second Wave Clapotis Knitalong and I spent the day hunting for knitting needles and winding yarn. I finally did a few stitches this evening, but just on my gauge swatch. I have yet to begin the actual object. You can read more about my start on the KAL blog (and see all the lovely progress others have made on this project).

Let's Play Dictionary!

2007-09-01T13:30:00.000-05:00

I really love the Mindbumps I've been finding for inspiration lately.

suggested by EurekaLoop

"Select a random word from the dictionary that you do not know, look up the meaning, and use it in your blog post."

Friday's Word of the Day was "tyro," meaning a novice or a beginning learner. I've just signed up for a knit-along, the first I've ever done. My understanding of the knit-along concept is that it's a little like a book club and a little like a support group. Everyone starts the same project at the same time, and asks questions, gives advice, shares details about the project, and so on. I am a tyro knit-alonger, as well as a tyro Clapotis-er (Clapotiste? Clapotis is the name of the project in question, from the Best. Knitting Site. Ever., knitty.com). I hope the knit-alongers will be gentle with me.

Now reading: The Amulet of Samarkand by Jonathan Stroud
Now knitting: Shawl in Southwool handspun merino, Baby Bobbi Bear in Patons CottonTots

2007-08-31T21:50:00.000-05:00

suggested by Blogletting.com

"My neighbor has a bumper sticker that reads: "Remember Who You Wanted To Be". Did you grow up to be who you always wanted to be as a child?"

Who did you want to be when you grew up? I thought I'd be a teacher for the longest time. When I was littler, I know I had a nurse phase. My mom gave me a box of memorabilia a year or so ago. In it was a homemade "postcard" addressed to "Mom/The Kitchen/Our House/Aurora, Ill." with the following message on it:

Dear Mom,

When are we having dinner? I am very hungry.

Love,
Nurse Andrea

The nurse thing never materialized. The teacher thing was abandoned when I nearly flunked out of history in college (was planning a career as a history teacher).

But did I mention I used to play "library" all the time when I was a kid? When I decided to go to library school, my mom laughed and said she should have known. Of course, the other thing I liked to play was "JCPenney." I guess we should be glad some career paths didn't pan out.

Less Degeneration. More Drivel.

2007-08-29T19:53:00.000-05:00

School is in, so Spanish classes have started again. Yesterday we had to fill in a questionnaire about ourselves. The toughest question was "Name something unique or interesting about yourself."

Last semester, my answer was easy: "I am currently knitting a pig." I knitted a stuffed pig for my son's birthday. He was obsessed with Charlotte's Web, so when I found a knitting pattern for a toy pig, I knew it was my destiny.

With Wilbur long since completed, my best random conversation starter no longer applies. I need to give some thought to my next crazy true fact. In class, I went with the not-terribly-original (and not exactly true either) "I make the best brownies in the universe." Well, they are good, but not that good. And being able to make good brownies, while a useful skill, is not especially unique or interesting, really.

I suppose I could have mentioned the fact that I'm in the midst of hand-dyeing long underwear so Superman will have something to wear come Halloween. Turns out that "royal blue" Dylon dye in a stainless steel soup pot for an hour will make your off-white thermal undies look like the real thing.

Now reading:
The Amulet of Samarkand by Jonathan Stroud
Thirteen Days/Ninety Miles by Norman H. Finkelstein

Now listening:
"Wait Wait Don't Tell Me" via podcast
Partly Cloudy Patriot by Sarah Vowell

Further adventures with Imuran

2007-08-27T19:08:00.000-05:00

The intermittent, agonizing stomach cramps continue. I've now had 3 separate incidents. The cramps are not what I normally would think of when I think "stomach cramps," sort of a brief pain like you might have along with indigestion or other GI issues. This is more like a stomach charley horse, so bad it makes me double over, makes my back hurt, and makes it impossible to do anything at all, including sleep, and it is unrelenting, for 4 hours or more.

The last episode, I resorted to my prescription pain pills (Tramadol), which actually worked like a charm. About 20 minutes after taking the tramadol, I literally felt the cramp relax. I felt the release roll across my back from one side to the other; it was really rather strange.

I don't know if narcotics are really the way to go with this issue, but I'm glad to have something to fall back on until I'm able to consult my rheumy about it.

I can tell how well it's working, though. Last week's traumatic thunderstorms made my fingers look like bratwurst, they were so swollen, but that was the first significant problem I've had since going on the Imuran. And interestingly, they didn't hurt much. Stiff, kind of wonky feeling (the same kind of feeling I used to get in my bad knee that told me it wouldn't support my weight), and swollen, but not particularly painful.

I'm therapated

2007-08-10T23:03:00.000-05:00

Had my last occupational therapy session today. I found it very valuable. Talking to the therapist really made me aware of a lot of things I shouldn't be doing, or should be doing differently. Get help with the grocery shopping, for example, so I don't end up hauling all the bags into the house by myself. Make tasks into multiple steps, such as

take out the milk jug
set it on the counter
close the fridge
take off the lid
pour into the glass
put it back on the counter
put on the lid
open the fridge
put it back in the fridge

so I can use both hands for the lifting and not put strain on my joints.

Some of this will be hard for me. I finally scrubbed the paint spots off the bathroom counter today. I asked hubby to clean up after rinsing the paint brushes 2 weeks ago, and let the paint spots sit, hoping he would do it. Today I got fed up and cleaned up, and realized afterwards that scrubbing off paint spots with a sponge and Comet is really not great for the fingers.

Getting my 4-year-old to carry his own bag when I pick him up at preschool is fine when he's cooperative. But when he's not, and I need to bodily remove him from the classroom to the car, I still end up carrying his stuff. And when hubby forgets to bring home the bag from the day before, and the day before that, the issue is compounded.

I guess, having done the OT, I now know how to look at my life and recognize these as problems. What I have to do next is figure out how to prevent them. Realizing with the last stroke of the sponge that I shouldn't have done that is less helpful than planning ahead so I don't pick up the sponge. Sadly, planning ahead has never been my strong suit.

Imuran update

2007-08-07T22:41:00.000-05:00

Well, the take-with-food-or-milk bit has helped considerably with the Imuran side effects. I've had some mild stomach discomfort, but nothing even approaching the 4am Saturday please-kill-me-now cramps. And I think the Imuran's working, too. We're having another week of miserable thunderstormy weather (very very bad for creaky old fogies like me). Today my right middle finger (the worst so far) was a little twingey, but that's the most trouble I've had since starting the Imuran. I've taken only a couple of doses of Advil in the last two weeks, and haven't had to hit the Tramadol at all. (Compare this to 2400 mg daily of Advil, plus Tramadol at least a couple of times a week, and sometimes more frequently, in the couple of months before Imuran.)

And now that I've bored my no readers (reminds me of a silly joke: what's yellow and invisible? No bananas) to no end with whining about my pain, here's an interesting tidbit: A new study shows that rheumatoid arthritis patients have reduced life expectancy compared to their same-sex, non-RA siblings, while simultaneously showing a 40 percent lower rate of cancer-related death.

Oh my poor poor tummy

2007-08-04T10:14:00.000-05:00

Apparently, the most common side effect of Imuran is nausea and stomach cramps. What I didn't expect after a full week of taking it was the 4-in-the-morning, doubled over, moaning in pain variety of stomach cramps.

After some frenzied googling (imuran stomach cramps HELP)and some thoughts of losing the use of my hands for the rest of my life might be preferable to this, I found a site that suggested taking the dose with food or milk to prevent stomach discomfort. Don't know why they didn't suggest that on the labeling, but there you go.

MyRACentral.com

2007-07-27T08:45:00.001-05:00

This site offers RA related news and information on drugs, symptoms, doctors and hospitals, clinical trials, and more. Blogs offer a variety of perspectives: a patient who's struggled with RA since childhood, one with an adult diagnosis, and a rheumatologist. Forums provide a chance to connect with other RA sufferers, and there's even a section on figuring out your health insurance coverage.

Good News for Plaquenil Users

2007-07-26T11:43:00.000-05:00

There's a bit of good news at Medicinenet.com for those of us who use Plaquenil (hydroxychloroquine) for RA or lupus. According to The Journal of the American Medical Association, hydroxychloroquine may help prevent type 2 diabetes. In a 21-year study, 4,900 RA patients' medication histories were tracked. Those who took hydroxychloroquine at some point were 38% less likely to develop type 2 diabetes.

Goodbye, Streisand Hands

2007-07-25T17:29:00.000-05:00

My dear friend Colleen has always said I have Streisand hands, probably because of my long, slim fingers. I never really thought Barbra Streisand's hands, but they seem nice. I never really thought much about my own hands, either. I was flattered, anyway.

Now that rheumatoid arthritis (RA) is beginning to destroy my knuckles, my hands don't look like Barbra's anymore. They still look pretty normal (on a bad day, they start to look a little like this), but they hurt frequently (even holding my 4-year-old's hand can be painful), and I'm fearful of what's to come.

I'm 33 years old. I was diagnosed with lupus / mixed connective tissue disease about 3 years ago. I started seeing a rheumatologist, who takes my blood for tests several times a year to monitor my condition. Last year, my blood began to test positive for rheumatoid factor. For the last several months, the pain in my hands has been noticeably worse. I've begun to confront the reality of not being able to do things I've always taken for granted, such as holding a paintbrush or roller for this weekend's project of painting my son's bedroom.

Right now I'm learning a lot about RA and treatment options by reading Good Living With Rheumatoid Arthritis, published by the Arthritis Foundation. It's a great book that clearly explains what RA is, how it works, and the different medications and treatment options available.

My intent is for this blog to be a place to explore my feelings about RA, talk about how it's affecting my life, collect internet resources of interest, and to record my experiences, for myself or others.