My Day

It's been a long, hard day.  CRPS, as I experience it most of the time now, comes to me in its Blue Phases -- not *quite* as mesmerizing a thing as Picasso's blues and roses, but remarkable nonetheless.

My Blue Phases are cold, cold, cold -- to touch my legs is to touch ice.  My arms are a pale violet, cool, like evening.

The pain is burning, shooting, stabbing, throbbing -- quite a counterpoint to the cold, cold, cold at the innermost core.

Today, I woke to find both legs involved in a major shift, the left up to the knee, the right about 8 inches above the knee, to mid-thigh.   Red, bright bright, blood red.  Holding your hand inches above the skin, you feel the heat radiate out. 

Lobster red.

Swollen as if pregnant, and not in a fluid-y kind of way.  Solid swollen.  I tried to walk alone to the bathroom and broke down, broke down like a car breaks down, broke down like an insane woman pushed too far breaks down.  Lobster pregnant swollen red red get your red hot here, Edema!

photo courtesy of Practical Neurology

At 9 am, I was already over 100, could feel -- behind the eyes, in the smallsmall joints -- the temperature rising. 

I was fasting before some testing, so I couldn't even indulge in a calming coffee.  Coffee does calm me, and when I am AttackingFever, it gives an extra kick to the Tylenol and ibuprofen.  Or -- I just like coffee, okay?

Today was a first -- I complained about my wait at my MDVIP doc's office.  I was there to donate lots and lots of blood, so that when I go in next week we have an idea of where I am at with these infections, with the systemic inflammation, how my kidneys are holding up, and whether my liver is still unhappy.  I came very close to not going because things were just very very very bad.  Then I remembered that phenomenon common to us all -- the toothache that disappears on the way to the dentist, the sore throat that disappears after you argue your way into an open appointment slot, the car that purrs with perfection after you've lamented its clanking to that very impressive and stern mechanic with the great moustache... Oops.

So I said to myself I said, "Self?"

"Hmmmm?"

"We have to go.  How many times have we wished someone could get a sample of our blood when this Weirdo Weirdo Production goes haywire at 4 am?  Here we are, actually scheduled to go in, with insurance, too -- and we feel like grainy, tasteless applesauce that has been liberally sprinkled with Olde Blackened Wash Water, allowed to cool, and then warmed to lukewarm over a Sterno flame.  Served over a half-cooked shitake mushroom cap that has been oversalted."

So Fred stepped into that Regrettable Role of Loving CareTaker, helped me navigate the Grand Canyon gaping between my wheelchair, curbside, and the bleeping passenger-side seat of Our Ruby, the Honda CRV.  I moaned and cried, I embarrassed myself.

He regaled me with stories about His Girls, the Militant Existential Feminist Lesbians, and their latest shenanigans -- and Fred made the bouncing Ruby fly, as only Ruby can, so that we got there right on time. 

Eighty minutes later, I was writhing.  I writhed.  (Now that's a sentence one never plans on writing!)  And suddenly I decided I was tired of always being the Understanding Patient.  I often get passed over in the wait order -- "because we wanted to clear a special block of time for you";  "because we know you understand how backed up we get";  because, because, because. 

I said to Fred, I said:  "Fred?  Don't they get that it hurts me to have to sit here like this?  I am in effing pain, effing pain," I say!

And Fred, damn him, looks up, coolly, from his second rate novel, and says:  "Apparently not."

So I put the speed on my machine on UberHigh and Zoom over to the receptionist.  I use the Ancient Plain Speech of My People:  "I am having a hard time waiting due to pain.  When can I get back there for a blood draw?"

Unfortunately, she speaks one of the Minor Languages of a Now Extinct Species.  "She said she'd be with you pretty soon, I know I heard her say that.  I think she is waiting to get you into a really good room where you will be most comfortable."

Some things don't translate, as any Foreign Language Teacher will confess to you, if drunk.

Like:  I am here for a blood draw -- you can do it in the hall for all I care.
Like:  I. am. in. pain. So. do. it. Do. it. now.

Alright, yes, there should be kudos for my doc's nurse -- because she is deft and brilliant and the only person who can get my blood without aggravating youknowwhat.   And she is, without doubt, a person of only good intentions. 

Still.  I think I need to dispel this myth that because I am disabled, contorted, and crammed in a chair, sick, that I have no problem spending the day hanging out in a doctor's office.  I am not a piece of furniture.  It happens, to be honest, more at the orthopedic surgeon's office than anywhere else.  They do things like put me in the cast room, "because we know you don't mind waiting..."  Just because I was practically living there, having 7 surgeries in under 18 months, doing either pre-op crap or post-op crap, or what-the-fuck crap... does NOT mean that I do not mind waiting.  Being a frequent flyer by no personal fault shouldn't condemn you to lower standards of hospitality (it's the only word I can think of, but it is not right).

By the time we got home, down the drive, over the moat and beyond the drawbridge... I was almost delirious with fever.

I think I still might be though I have an Annoying Sweat going, that I hope heralds a break in the heat.

Comfort ye, comfort ye, my people. 

This will all have been worth it when we get some illuminating information back from the lab.

Oh. Yeah.  I am way febrile!  When I grabbed the laptop, it was with the intention of directing you, once again, over to Margaret and Helen, that wonderful blog.  Helen Philpot is ranting about the Beck/Palin Revival last week in a post titled 100 Grand Bore.

Allow me to tempt you with its beginning:

Margaret please tell Howard that 100,000 people will show up to a tractor pull if the entry fee is cheap enough. Big deal. I’ll tell you what I’m going to do. I’m going to ignore them and have some pie.

As I see it dear, if more than a hundred thousand dead civilians in Iraq and Afghanistan can be dismissed, so can slightly less than a hundred thousand peckerwoods at a Beck rally.

If the civil rights of millions of gay and lesbian Americans are not important, then neither are the pathetic rants of almost a hundred thousand Palin addicts.

Now, go read the rest!

In other news, there's been yet another meltdown over at Pop That Zit!  This time, it involves a couple of veterans, with one of The New Breed mixed in, for confusion's sake. 

It's funny, and yet not, how a good subset of those who post vids over there decide to confound their own worth with the "value" of their postings.  It's puerile, and says a lot about our messed up notions of "authorship," and... as I have stated a few times, totally BizarroWorld assertions of "ownership."

Well, I am gonna try and convince My Shadow and Near Appendage, Miss Marmy Fluffy Butt, to detach herself momentarily from my dripping side and fetch me some lowfat plain yogurt, mixed with a hint of vanilla, some fine cocoa, a kiss of cinnamon, and 5 packets of fake sugar -- all nicely wisked together.

Then I am gonna imagine myself a balmy lake, and read the rest of this John Irving novel (now I am on A Widow For One Year).

I hope you had a nice day.  If you did not, let's both of us look to tomorrow, with hope.