oh dear

It's been the better part of a month and I've blogged absolutely nothing.  Wow.  If you recall my previous blog, I used to post something nearly every day.  I can't even claim I've been too busy or too flare-y from the RA.  I've been too lazy and had nothing much constructive to say, I guess.

Rheumatoid Arthritis seems to be moving through my system like wildfire, and the Enbrel doesn't seem to be having much effect.  I've heard various frightening things about diminishing returns - if you start on one biologic and it doesn't do you any good, you're not going to get much better on another.  My rheumatologist seems to think he can still get me comfortable and functional.  I like the man, but I'm starting to lose faith.

My husband is tired of the RA and pretty much just wants the old wife I used to be.  He doesn't like this version.  She's got too many problems and doesn't do as much.  I think my son feels pretty much the same.

Oh, lord.  I'm wallowing in self-pity.  I really don't feel that badly right now.  Just a bit discouraged.

I've been talking to one of my dearest friends during my commute in the morning through the miracles of cell phone and Skype.  I can't tell you how much that improves my days!  She and I have a long and colorful history, and I miss her so terribly.  The sound of her voice and her recent company have been enormously helpful.

My family of origin, however?  Batshit crazy as always.  I talked to my sister the other night and found myself laughing (aloud and quite inappropriately) at her complaints.  It never ceases to amaze me that my family can turn a garden hose into a major international incident without an real provocation.  I love them, though.

Still not dead...

Whoops!  Sorry about the blogging hiatus there.  It was totally unintended.  Things got very hectic at work, in the personal life, and with the RA.  The combination completely prevented a few minutes of quiet time to sit down and blog a bit.

My son turned 16 yesterday on Easter.  My baby.  Strangely, it wasn't as emotional as 15 was last year.  I have no idea why, but 15 nearly broke my heart, but 16 was just a very happy birthday.  Yes, the driver's license will be procured later this week.  He's very responsible, so I don't particularly worry about him doing something stupid.  It's other drivers I worry about.

Not blogging about the idiocy that goes on at work is harder than you might think.  We have lots and lots of idiocy in this place, but I just don't know how to tell some of these stories without completely giving away everything about this place which could be detrimental on many levels.  Just remember, boys and girls, that you cannot take a drug test until you pass it.  It's a one time thing.  So make sure you're clean when you take it and remember that the artificial pee sold in the back of "Stoner" magazine is detectable by a good lab no matter how long you strap it to your leg. OK?

Well, I finally let the rheumatologist break out the big guns.  I had a nasty flare last week that had me crying for mercy, and I called the amazing Dr. L.  He calls me back himself, notices when I have a new haircut, and is generally one of the nicest guys I've ever met.  I may have to leave my husband for him if he can actually fix this whole RA thing.  No, not really, but he can certainly have my first born.  (No one wants a grad student anyway. Too expensive!)  Anyhow, I finally agreed to take some Vicodin for the pain.  Yes, I am a complete wimp and realized that it's paracetamol and sold over the counter to some of my foreign friends, but I do not like codeine in any form.  It tends to make me drowsy and barfy.  Not a good combination at all.  My blood pressure was still up, even with the addition of other BP meds (three now!) and the pain was intense without the NSAIDS.  The inflammation was skyrocketing and the Enbrel seems to be failing.  (Sigh)  As a stop-gap sort of measure, he prescribed Hydrocodone to see if he could break the cycle of pain pushing blood pressure pushing pain because we're both quite leery of hitting me with even very lose doses of prednisone right now.

Two pills (plus and anti-nausea med) and twenty minutes later, I was singing Pink Floyd songs and feeling just dandy.  My feet still hurt, but I really didn't give a crap.  It was great.  Which is one of the reasons I don't like that stuff.  It makes me want more of it, which is not a good plan.  My feet are currently hurting a bit less, but I've got some peripheral neuropathy that's making me NUTS.  I see the amazing Dr. L again on the 18th, so I'll bring it up with him.

Meanwhile, a well meaning friend continues to send me all sort of information about anti-inflammatory diets, miracle cures for RA, my need for exercise, and lots of other advice.  Look, I fully realize that doctors and pharmaceutical companies are making a freaking fortune treating rheumatoid arthritis.  Maybe my friend is right and there's no incentive for them to find a cure.  I just know that the very kind and helpful Dr. L says 99% of what's written about RA cures is pure, unadulterated bullshit and that he will help me to the best of his ability.  He seems like a better bet that a friend with no medical degree and lots of books and healy-feely cures, right?  Maybe I'm doing all the wrong things.  How do you know?

Husband wins

I've learned this week that feeling horrible can actually pay off!  If not in fun, at least it appears to be paying in material goods when my beleaguered and infinitely patient husband feels I need cheering.  Dear friends, I became the proud parent of a New iPad last Friday evening.  I didn't ask for it.  I have never owned one of these delightful little toys before.  While it is very much an overgrown iPhone, it's also beautiful, slick, fun, and very cheering indeed.  He really shouldn't have done that, but I'm enjoying it a great deal.  Yes, he will get a whole lot of mileage out of that one.  I can't get mad at him for at least three weeks.  Maybe longer.  Actually, it's pretty rare for us to argue anymore.  It just wastes time and really doesn't solve anything, so we don't bother much anymore. When we do, it's really ugly.

I know I said the blog wasn't going to become an RA blog because it's already well covered, but screw it.  I'm going to bitch about it some more anyhow.

NSAIDs cause your blood pressure to rise.  Or they can.  And mine has been hovering right around 165/90 which isn't quite gasket-blowing level, but mighty damned close.  I've been treated for high blood pressure for nearly a decade, but my cholesterol is normal and always has been, so I've taken the meds and not given it much thought until recently when I could feel it getting out of control --  Headaches, jangled and anxious feeling, you know how it goes.  Or maybe you don't.  Anyhow, I went to the regular PCP about it, and was told to stop taking the NSAIDs and triple my 10mg dose of lisinopril until it falls back into a normal range.  It's not going down and the sudden withdrawal of the NSAIDs is causing pain and swelling, not to mention extraordinary fussiness and fear imminent stroke.  I suppose I need to call the doctor's office again.  

In alternate news, I am utterly fascinated by this website of cool, overpriced South Korean things, and clearly need the Rabbit Toilet Paper Case because it would be so very useful.  I actually love the purse organizers, but they're absurdly priced.

Things I've recently learned

Here's a list of random things I've learned recently - because one must never stop learning, right?

1)  People who say "Oh, I have a little bit of that in my knee," about rheumatoid arthritis make me alternate between the desire to educate them and the desire to whack them in the head with a blunt instrument.  I've learned to smile and walk away.
2)  Fake mustaches can be purchased in six packs at our local Hobby Lobby.
3)  My mother-in-law thinks that any nice thing I say about my husband is a direct compliment to her for having raised him.  It's not necessary to enlighten her regarding the truth.
4)  It is expensive when the head gasket in a car needs to be replaced.
5)  I might like to live (alone) in a place like this. (No, I'm not leaving home and family.  It's just that I sometimes crave solitude and the concept of living more simply is quite appealing to someone raised by a packrat.)
6)  There are eighteen different animal shapes in a standard box of Barnum's animal crackers.
7)  Enbrel:  that shit burns like crazy when injected.
8)  I want the new iPad - the first two versions didn't interest me that much, but I'm suddenly smitten with an inexplicable burst of consumerism and desperately want one.
9)  Cat pee glows when exposed to a black light
10) I really don't give a crap about March Madness or brackets.

I'm a golf pro!

You've doubtlessly seen all the ads on TV for drugs that treat rheumatoid arthritis.  They make things look like one dose of this stuff will make your entire life so much better that people want to take it even if they've never had RA.  Then they give you all the warnings about the dreadful things that might happen if you take it.  Then they list the side effects which always seem to include seizures, coma, and death.

At this point, I'm willing to take all those risks and let my very nice rheumatologist run me over with his drug train.  Phil Mickelson takes Enbrel, so this means I should now be able to golf, right?  No, I've never had a lesson, but I'm pretty sure that if he can do it on these drugs, I should be able to as well.  Being a golf pro will certainly help out the family budget.  When do I go on tour?  Are they letting women into Augusta yet?

We'll see if this stuff helps.  Something has to.  The steroids are telling me to eat everything that comes within a grabbing radius and kill my mother-in-law, so I have to quit taking them.

I really thought I'd be blogging more, didn't you?

Nothing new here, move along...

OK, no more leftover chili in the microwave at work.  No matter what I do, it explodes.  Yes, I put a vented lid on it, but the instant I turn my back to grab a napkin, there's a soft thump and everyone else in the breakroom looks up to see whose lunch exploded.  It's often mine, although I've seen the product of some pretty spectacular messes others have left behind.  How can people just walk away from that sort of mess?  This doesn't count as blogging about work, by the way.  It's merely remarking upon my Dilbert-like workplace and its denizens in a generic way.  Totally different.

My darling Buddhist daughter has recommended an audiobook of guided meditations by Jon Kabat-Zinn to see if meditation can help me deal with RA.  I could quite possibly be the very worst candidate on earth for mindfulness meditation, but at this point I'm willing to try anything.  G wanted me to take a meditation class, but I can't quite see myself twitching and twisting and trying to get comfortable with a roomful of...well...anyone right now.  (My irritability is at an all-time high thanks to the pain, and I'm just not fit for polite company.)  I listened to part of it last night, and the man has a pleasant voice and some very good points as well as an amazing track record at helping others, so I'll give him a shot.  

Seriously Dude?

Every morning , on my way to work, I drop B off at the high school.  We stop on our way to school and pick up his best friend, Chris.  B usually drives, since he's working towards a license in the spring.

This morning, Chris got into the back seat and said, "Dude! Where were you last night?  Why weren't you at rehearsal?"

"Dude!  Seriously? Rehearsal?" my mildly sleepy son repeated.

"Dude!" Chris admonished him, "Band practice!  Seriously!  For the concert tonight?  Where were you?"

"Dude!" said B, "I thought that was next week.  Oh crap!  Mom, we seriously have a concert tonight!"

I sighed as I recalled the old Rosanne Barr bit about some animals eating their young.  "What time do you need to be there tonight?" I asked them.

Silence.

"I dunno, Dude," Chris said.  "We'll check at school today.  Prolly around 6:30."

"I hope Mr. P isn't too pissed off at me for missing rehearsal, Dude," said B.

"Dude, he was like asking me where you were and stuff, and I was like I dunno Dude."

As B pulled up to the school, I asked them, "Can either of you use a sentence without DUDE in it?"

"Have a good day, Dude," my son told me with a self-satisfied smirk.  Apparently the answer to that question would be no, they can't.

(Please insert clever transition of subject here.  I can't think of one.}

If you Google Rheumatoid Arthritis (go ahead, you know you want to), you will get all kinds of crap, some very helpful information (mostly from the Mayo Clinic), lots of great blogs, and then a lot of propaganda-like misinformation from people who want to sell you supplements. The whole goal is managing your RA.  In fact, most of the articles you read are about how rheumatoid arthritis is managed.

I would like to know how one actually gets to the point of managing one's RA.  Mine is currently managing me, and I don't have it nearly as rough as some of the RA bloggers I read.  I can barely walk most of the time, and it hurts like hell when I do.  I smile and pretend I'm fine because it's too hard to explain to the other 300 people in our office who look at me strangely as I limp away.  But my hands, while stiff and swollen, still work.  I am still able to type fairly well, talk on the phone, attend meetings, and generally work all day even though I'm thoroughly and completely crispy fried to a crackly crunch at the end of it.  How long can I keep doing this?  I feel quite out of control with the physical manifestations of this disease.  RA decides how long it takes me to get ready in the morning.  It decides how early I go to bed at night.  It decides what's for dinner and even who is going to cook it.  RA decides if I'm going to attend a meeting or cancel it and reschedule and do that again four times before my boss thinks I'm avoiding a project.  RA stabs at me while in those meetings as it will jab me tonight at my son's band concert.  It will also decide if  I should sleep tonight and how well.  When and how do I get to the point of managing it instead of the other way around?

I know, I know.  It's a process.  I hear that a lot.  I'm just not enlightened enough for the "mindful journey" my lovely Buddhist daughter tells me this disease can be for me.  Have you ever tried to sit still and meditate when you're in a great deal of pain?  I know they say it can help, but it's hard for me to clear my mind of the "Ouch, oh crap, ouch," mantra that takes over the rest of my day.  I don't want to be mindful of my pain, thank you.  I'd rather have mindless oblivion, but I'm not going to get that while trying to function all day.  Dude!  Seriously?  How does this get managed?  My doc has been trying.  The meds are supposed to be kicking in.  But they aren't yet.

And my husband just let me know that he's going to leave work a couple of hours early and get a nap before the band concert.  He's really tired.  Dude!  Seriously?  I can't do that.  I am resentful and jealous as hell that he can not only leave work merely because he feels like napping, but that he's healthy and doesn't need one anywhere near as badly as I do right now.  See?  Failing at marriage #2...

Dude.  Seriously.