Hurts so Good

Yesterday, I went for a deep tissue massage.  I have a  membership at a local massage place.  For about $60 a month I get a massage every month that rolls over if I don't use it, and additional 1 hour massages are $30.  My back has a habit of knotting up and then completely going out, which usually means two days off from work while I recover in a pain pill and muscle relaxer induced coma.

This time around my back (and really the rest of my body) was pretty bad.  Everything ached and my posture was seriously terrible because it hurt so badly.  The manager at the massage place told me that this therapist was great at deep tissue.  I told him not to be afraid to dig.  He was careful to ask about my RA and whether anything hurt (of course it did) and to ask if I had any bruises; the last time I went in I had IV bruises up and down my arms.

This therapist was darn good; he definitely got all of the knots out and my back is loose for a change.  The popping noises it made when I sat up were completely astounding.  He also found trigger points everywhere else, which is not surprising.  I think with any chronic condition affecting the joints, muscles tend to overcompensate and end up tensing up, which in turn just makes the joints hurt worse.  It's a cycle.  My ankles and elbows also feel a lot better today.

Unfortunately, I am sore and bruised.  Below is a picture of the middle of my back.  You can see the visible swelling on either side of my spine as well as the impressive bruises.  For the record, I have done some research and with deep tissue massage some bruising is normal if you're really tense.  Bruising on this level, maybe not, but I also suspect that all of the meds are causing me to bruise quite easily.

I'm loading up on the ginger and tylenol and am taking epsom salt baths alternating with ice packs on my back. I'm also considering a ginger bath tonight to sweat some of this out.  Either way, my back still feels better than it did two days ago!

I Didn't Watch the Grammys

It's true, I didn't.  I thought about it, but I always cry at tributes.  I don't really follow pop music and I'm not into spectacles like this.  The Facebook posts about Nicki Minaj, however, were enough to make me seek out the performance on YouTube.

I understand that people were offended by the presentation and by the mocking of religion.  I'd like to point out, however, that this is nothing new.  Songs about exorcism have been around for a very long time and are well-known in the literature of classically trained musicians.  They're called Tarantellas.

Musicians and artists have been satirizing the Church and giving it a hard time since at least the 11th century when the Carmina Burana hit the shelves, so to speak.

Here's the difference: in the 11th Century, and for a long time after that, people had a better reason to satirize organized religion.  For a long time, the Church was the only major ruling power in the world.  If you were rich, you could buy forgiveness, but if you were poor you weren't being helped at all.  For the most part, things have changed since the middle ages.  Churches of all kinds have set up outreach to help people.  Since the separation of Church and state, no organized religion has any power in government.  Religious persecution continues, yes, but it's kept better in check in 2012 than it was in 1180.

I don't have too much of a problem with what Nicki Minaj might refer to as "performance art."  I'm all for free speech (well...except for this.)  The one instance in which Nicki Minaj crossed the line was her allusion to sex abuse in the Catholic Church.  If you're going to protest it, protest it.  Here's a good example.  When it's to enhance a performance of completely unrelated material and as background dancing, however, it's insensitive, pure and simple.

The biggest problem that I had with the performance was that the song truly stunk.  There was no real complexity or depth, the singing was average at best, and I finished watching with no idea what Nicki Minaj was trying to communicate.  People might praise the performance as avant grade or unique, but the bottom line is that you can't put makeup on a pig.

Recent Developments

I really stink at keeping things current, apparently.  If you're still following the epic saga of All My Kittens, here's a quick update.  We've gone from climbing the walls to this:

This is Wednesday in the picture.  Mac has made similar progress but overall Wednesday is more clingy and less camera shy.  Mac likes to chase things on the computer screen.  

In other news, after heading back into a flare my rheumatologist determined I needed to add methotrexate.  I was seriously hesitant about going back down this road.  I was up to 6 or 8 pills a week (can't remember which) when I was on it in high school and college, and it made me really sick. Methotrexate is a low-dose mild chemotherapy drug.  It is low-dose and mild but has the same side effects.  This time around, I'm on a very tiny dose of injectable methotrexate.  Injectable is better absorbed by the body than pills and since it bypasses the digestive tract the nausea isn't as bad.  Still, I'm taking mine on Fridays in case the day after is a bummer.  

These are way easier to do than Enbrel injections. They do require a little more preparation, but they don't burn and the needles are seriously tiny.  This is the first time I've ever felt comfortable injecting into my stomach.  Seriously, check out that tiny needle!

The vials are also tiny.  Two of them come in a pill bottle labeled with the prescription info.  

OK, it looks like radioactive Mountain Dew.  But it doesn't burn, and I have noticed an improvement so far.  The side effects aren't terrible....yet.

Feliz Navidad

Well, folks, it was an eventful trip to Kansas to spend Christmas with my Aunt Brenda and to visit old friends.  First of all, a rare winter storm in the Southwest made driving a rather messy hassle until I got out of New Mexico.

Unfortunately, driving through Roswell there was a nasty incident with slamming on breaks driving through town, and long story short, I need two new headlight assemblies.  I ended up using bungee cords and duct tape to get me the rest of the way to KS.

I spotted an awesome mullet somewhere in Oklahoma.

Finally, here is the end result of my Christmas crafting.  My great grandmother wrote a poem about Mrs. Claus, so I made an ornament for each verse to give to my aunt.  Since her tree is blue and silver, I kept the ornaments those colors.  I'd give instructions on how to make each of these things, or at least link to online tutorials, but it's less work for me if I just tell everyone to look on Pinterest.

Of all the busy people
this happy Christmas time,
none work like Mrs. Claus
for days and nights besides.

The good old Saint her husband
has so much to do
if Mrs. Claus did not take hold
they never would get through.




Their home is bright and cheery
they call it Reindeer Hall.
Icicles stick fast to the roof
and icebergs form the walls.

The Northern star, bright and shining,

gives all the light they need, 

for How to Climb the Chimney 

is the only book they read.

There's dolls in all the corners,
there's dolls in all the chairs,
piled high in every cupboard shelf
and way up the front stairs.

But not a stitch of clothing

on any can be seen.

Old Santa Claus is nice, 

but he can't sew on a machine.

So Mrs. Claus is busy

making petticoats and sacks.

And there are all the shirts to make 

for all the jumping jacks.

And long clothes for the babies, 

and hats and caps and capes.

All the dresses must be cut 

in the very latest shapes.

Bright on the fire a kettle boils

making such a noise.

The lid pops up, 

how good they smell

those lemon candy toys!

Such lots of candy cooking, 

such stacks of chocolate nice.

The kitchen is a sticky place, 

so sticky but so nice.

The reindeer must be harnessed, 

the toys packed in the sleigh

and old Santa Claus wrapped up in furs

to ride so far away.

Then Mrs. Claus he kisses and says, 

"My dear, I don't believe I'll be back home

'till nearly New Year's Eve."

And then away he dashes, 

as Mrs. Claus does call

"Be careful how you climb, 

I'll worry lest you fall."

And old Santa Claus is smiling, 

"I never in my life

could do so much for boys and girls

without so good a wife."

I'd like to apologize for the weird formatting in this post.  Between the Yorkshire pudding and the homemade toffee, my stomach is full and my brain is fuzzy.  Merry Christmas, everyone!

Propaganda v. Real Life

I am knee deep in Christmas crafting.  Actually, over my head would be more accurate.

I know it's been nearly two months since I last posted.  Life has been crazy, between rescheduling a concert that got snowed out (it was a big one, too...and since when does stuff get snowed out in the desert? Ick!) and everything else, it's a miracle the military hasn't annexed my apartment and office for hazardous terrain training.

Meanwhile....I got my fourth infusion of Actemra yesterday, and it couldn't have come sooner.  It's been a rough few weeks as I am in what my doctor calls the "peaks and valleys" stage of treatment.  This is a valley.  This last infusion marks the first time that my nurses missed my IV on the first stick and had to stick me not two but three times...and then I didn't bleed enough from the IV stick for labs, so a guy from the lab had to come up and stick me a fourth time.  The first IV attempt hit a valve and left me with an awesome bruise.  The ones on my hand are cool too, but not nearly as impressive as this one, which is becoming more colorful by the hour.  I still love my nurses, though.  They do a great job.

Anyway, I'm almost over my infusion hangover (which feels exactly like a real hangover, by the way) and recalled some mail I got about a week ago from the drug company.

By "mail" I mean this stuff was delivered to my doorstep via UPS.  This is a miracle considering that when I was taking Enbrel it took an act of Congress to get the actual drugs delivered to my doorstep....but drug company propaganda is no problem!  When I first saw the huge package I thought, "Wow, that safety brochure they mail out has gotten huge.  Should I be worried?"

It turns out the drug company was being helpful and sent this lovely journal:

As you can see, this is supposed to help me chart progress on this new drug.  I can't decide yet whether I'll actually use it.  I hate paperwork, and I'm pretty aware of how my body is doing, so I probably won't.  I think this is probably more helpful for people who were more recently diagnosed.  It does, however, include neat little appointment stickers.  Those are kind of cool.  Everyone likes stickers.  

Yet another reflection of what I believe to be targeting of the newly diagnosed was the second item in the package, a brochure:

While I certainly can appreciate this attitude, it really isn't mine.  After 22 years with RA pain I'm not on a "journey", and I'm not so much determined as I am resigned to the fact that I must have something that works in order to function and live my life.  I have things to do.

Bottom line, my real life perspective on my RA is this:

Halloween!

Happy Halloween!

Halloween has always been one of my favorite holidays.  My mom always did a great job of making it magical, and I intend to do the same for my own children one day.  You know all of those Halloween episodes of Roseanne?  That's totally how my family was.

In the meantime, it's a great excuse to dress up in costume and pretend to be someone else for a day!  I'm still recovering from my scarlet fever, so I'm staying in and just handing out candy to trick-or-treaters tonight, but I did manage to put on a costume for school:

You can't see it in the picture, but there are tuning pegs on that bone necklace.  I suppose some cellos must be included in my kills.  The hair was surprisingly easy to accomplish with the help of some very tight rag curls that I put in last night before bed.  I woke up looking like Bozo the Clown, brushed it out and sprayed it, and I got cavewoman.  Works for me.

For my orchestra's annual costume concert, I dressed as Marge Simpson:

A lot of people mistook me for Thing 1 or Thing 2, I think largely due to the bright blue of the hair.  However, the shape of my hair is completely different, as is the costume.  I know I'm wearing a red sweater over the trademark Marge dress, but there's only so much skin you can show at school, especially if you're the teacher!

Two of my previous costumes, as well as Marge, are visible over at Mental Floss right now, but they definitely pale in comparison to some other costumes!  Today at school I saw a wide variety of "Sexy (insert whatever here)" costumes on girls.  It's so sad that these are the majority of available costumes for women and young girls.  However, I saw quite a few creative ones as well.  There is a great tumblr by the group Miss Representation that is showing creative and non-skanky costumes right now.  Go check it out!

I had fun with my IB music class discussing scary music today.  We watched Keeping Score's video on Berlioz's Symphonie Fantastique (don't do drugs, kids!), listened to and followed with the unconventional score of Penderecki's Threnody for the Victims of Hiroshima, and watched the most incredible animation I have ever seen (made using sand on glass) to Schubert's The Erlking.  The kids enjoyed it, and to my great amusement, had the same reaction that my kids last year had when I explained what the elf king was.  "So, it's a German Cucuy?"  Yeah, pretty much.   Happy Halloween, everyone!  Enjoy the animation.

Miss Scarlet, in the Throat, with the A Streptococcus

'Tis the season to be sick.

I don't know if it's just coincidence, but a week after my first infusion of Actemra (which suppresses the immune system) and a week after finishing 30 days of prednisone (which also suppresses the immune system), I have Scarlet Fever.

Don't worry too much; Scarlet Fever won't kill you nowadays like it and other diseases did in your elementary school days of playing Oregon Trail.  Really, this is strep throat caused by A Streptococcus, and my body is simply reacting to a toxin produced by the bacteria-hence the rash.  Of course I feel miserable, but I've felt worse.  On a scale of "screw it let's go dancing" to "take me to the ER now" I'm at about "I'll do my own grocery shopping but then I'm staying home and watching stupid movies, because holy crap I'm exhausted."  This isn't quite like that time in college when I got the mumps and had to be quarantined by the CDC, even though I am contagious for the next 24 hours and have all of the nasty symptoms pictured above.

I'm fortunate to have a really good nurse practitioner at my local urgent care facility who knows my rheumatologist and knows the RA drugs pretty well.  He gave me a shot of antibiotics (my rear end is quite sore now) and a ten day prescription of oral antibiotics.  Because he's a good healthcare professional, he gave me the option of steroids.  He said they'd really help with the swelling, which is fairly impressive at this point (my right tonsil is full of pus...ewww), but that he'd understand if I didn't want them.  I didn't.  30 days of prednisone in the last month was enough, thank you.  I guess I could have asked for painkillers, but like I said, I've felt worse and quite frankly my body doesn't need any extra crap. Doctors and nurses, take note: when you're dealing with someone who's had a chronic disease for more than 20 years, it's nice when you involve them in their own healthcare.  The urgent care nurse (who I liked the first time I went because he proclaimed my old and very much unloved rheumatologist "an arrogant pig who I wouldn't allow to shave my cat") also told me that he could literally smell the infection on me.  Ick, ick, ick.

I have to be careful with strep because my immune system is the equivalent of a poorly cared for 1971 Ford Pinto, and strep can very easily become rheumatic fever (heart problems) and/or post-streptococcal glomerulonephritis (inflammation of the kidneys, and your big word for the day).  Strep is sometimes even a trigger for juvenile rheumatoid arthritis, which is what I was diagnosed with as a child, and can aggravate RA.  I'm a little concerned that I may have to postpone my Actemra infusion on Friday, but will call the rheumatologist Monday to be sure.

Anyway...I'll likely still go to school on Monday, and I'll likely wear a costume, but there will be a lot of sectional work instead of full rehearsal.  I promised the IB kids scary music (Erlking, Symphonie Fantastique, and Penderecki's Threnody), so I will have to do some talking.  Speaking of IB, we've had some cool moments in there where the kids have been able to apply what they've learned in my class to other classes.  They've also told me that my class is the "most international" of all of their IB classes.  Win.

For the rest of the weekend, I did go grocery shopping.  I'll probably feel worse if I eat greasy delivery food all weekend.  Also, I needed cat food.  In the event that I'm so sick I'm rendered unconscious (unlikely), I don't want it to end in a news story that includes the words "and then her cats ate her face."  I'm going to make some miso noodle soup tonight because it's basically vegan chicken noodle.  I'm also trying out some easy to swallow and fall appropriate recipes from My New Roots: ginger roasted carrots, raw salted caramel apple dip, and white velvet soup (a personal favorite that I have already enjoyed on many sick days).

Remember to wash your hands frequently, cough and sneeze appropriately, and eat healthy this week!