Hurty Gertie

I can hear the electrons scream. It’s more than tinnitus (which I do get a blast of from time to time, bad enough that I can’t hear out of the affected orifices). If there are electronic devices on around, I can hear certain pitches of voltage.

In a house with two televisions, three desktop computers, and all manner of modern electronic “always on” energy eaters, I have to tune it out a LOT. I gotta say, though, that when the power is out I revel in the silence.

But I digress.

Pain, now, is my constant companion, like the tinnitus. A low level of pain that sometimes I can ignore, I sometimes cannot. I’ve read some of the rheumatoid folks’ sites and twitters and I know I don’t have it as bad as them, but I don’t look forward to the days when it gets worse … permanently.

As I type this, my hand joints are burning. My left hand is very swollen; I haven’t had enough rest, and stress as well as increased activity has contributed to this feeling. Some days I can feel pain free a while, other days, I can hardly move.

Sometimes I wonder if it ever goes away, or if I just can tune it out a while.

We’re on a new channel. A comedy central, if you will.

Okay, too much Futurama.

But I need to get back into blogging, keeping track of this and me and pain and life and research.

New things – Kelly Young is paying attention to the idea of RA, as always, but also to the more accurate naming of it – a “Rheumatoid Autoimmune Disease” here which is awesome.

But us #dxpsa folks are still kinda left out there. Not picking on her, of course, we need to find the time and energy to organize. And what to call it? When I do my “elevator pitch” about what the hell is wrong with me, the arthritis-like symtoms are the most … what’s the word … relatable.

Which sucks since it’s wrong. The exhaustion is often more prominent, or the muscle pain. Right now my fingers are swollen and tingly, and my feet and ankles hurt from some MILD gardening I did today.

And, unlike MOST of the Psoriatic Arthritis patients I know, I don’t even PRESENT with Psoriasis. WTF, man? I have one little patch on my arm, and one on my ass that come and go. I have some kind of bizzaro crap going on under my hair I can’t even begin to describe, but two dermatologists have INSISTED has nothing to do with psoriasis.

If anyone comes up with another name for Psoriatic Arthritis, let me know. Inflam Oh’Damn isn’t taken …

http://en.wikipedia.org/wiki/Psoriatic_arthritis

it is possible to mess up those plungy shot things. WTF. I got it in but pulled up a little too soon and a bit dribbled out and down my leg.

Now the foot itching has begun – damned if you do, damned if you don’t. AUGH. I need a drink.

Or maybe my smartphone is smarter than I.

I’ve been messing with my meds, some intentionally, some not. I’m getting on to the end of my “month” which I define as the last sunday every month. Which is probably stupid but whatever. My smartphone wants me to go on calendar days. How dumb is that?

I’m “due” for my shot Sunday night, but why? I hurt now. I’m tired now. Maybe I should do it Friday night, and do Friday nights from now on. Then at least I can enjoy my weekends instead of grinding through them before I stick myself and go to bed.

PS, yes, pharmacy, I’m ignoring you. I can’t find my co-pay paperwork and I’m not going to talk to you until I do.

I wonder if it was a bite. Probably was.

Leg flared up and hurt unlike the other time I had an infection – maybe I do have psoriasis, you dumbass. The raised redness, the dry flakiness of the skin … yeah. Which went away after rest and stuff.

I finally got around to trying that medicated shampoo from the dermatologist who said I don’t have psoriasis. But I googled it first. It’s a psoriasis med!

PSORIASIS. DO I HAVE IT, MOTHERF***ER?

Need another opinion …

I honestly dont get WTF is wrong with me. 

Yes, it’s hot. Yes, pollen count is INSANE. Yes, I’m stressed (more about that when I can). 

WTF is with my knees? Elbows? Everything – except my scalp. Everything hurts though I’m not that swollen. Ice and Aleve barely touch it. I’m ditching a family vacation this weekend that involves heat and walking about in it. 

At first I feared I was flaring up again, but when I reread my pieces of flare entries, it didn’t match up, symptom wise. (I am so glad I wrote it all down!!)

But I rested my ass off anyway. I just keep getting worse and worse and I’m baffled. I’m finally doing everything right! And yet …

I really need to start taking seriously that being sick is my job. And keeping it straight is, too.

I’ve got the kids routines down – phone on this day, pick up on that day, schedule the follow up three months in advance so I can work around whatever job I have at the moment or expect to have.

My own, not so much. Mostly it’s deal with the run around on the phone with delivery dates and refrigerated packages. I probably should go to mail order on my allergy and other meds just to stop having to go to the pharmacy every damn week (though it’s a great way to pick up rewards points). I have tried to normalize our meds schedules but with my depression med tweaks and everything else it just hasn’t happened.

I managed to get the allergy meds switched to mail order, but not the depression meds. Okay, fine, cool PA wants me to be monitored more closely. I don’t like the dose he’s got me on right now anyway (too high, IMO).

I go to pick up depression meds before I’m out (I’ve been halving my dose by only taking one pill a day now that I have one that works and I reallly don’t think I NEED that full dose) of pills and go home. I don’t read the bottle, but I take it home. Bad bad idea. (more…)

As in, if I have to put another damn thousand dollar into it, I’ll probably sell it first. Especially today.

I’ve been feeling good. AC runs cold, shift gears well, start up hills well and manouver into parking spots okay. Theres a check light or two on, nothing a little blackntape wont do for. Then I fall to bits.

Randomly can’t shift into reverse. Or use the power locks. Or some Damn thing. And I wonder how the old rustbucket even keeps it together.

If only we were as easy to diagnose and overhaul as ol 1K. Plug in a monitor, read the codes, do a fix. Dig out a service bulletin and replace this or that.

Every time I start to think I’m good and I shouldn’t be in pursuit of a job with decent insurance, something gives.

Today my left hand and knees. Stress? Up too late because I was feeling human? All that beef jerky for lunch because I’ve been lazy? Random madness?

Arrrrrrrrgh.

Seriously don’t understand the people sometimes.

I like to back into parking spots. Yes, I’m that annoying person. It’s easier to back in than out for me. When I can walk it, I drive through at the end of the lot so I don’t have to back in or out. Sometimes, when I find a spot at the front of the lot and attempt to back in, it gets a little confusing for people, but I do my best to outstubborn them on very hurty days.

So there’s a spot. SUV has it, is backing out. I pull past and put my left turn signal on. A car comes in behind me, blocking the SUV exit, and starts honking at me. And inching up fast (slam gas, slam brake) and honking. Finally pulls around and starts pointing to my right.

Ah, I’m blocking his handicap spot, and of course he has priority and no one else in the aisle should move until his parked … unless you’re in his way. WTF?

So I pull up a few inches, he screeches into the spot and I back up to block him in. SUV pulls out, I park (in under 30 seconds). I explain to the kidlet in the back that he was honking to talk to me, not because anyone was being dangerous (though I dunno I guess he was being a dangerous ass) which is the standard for using the car horn around here.

By the time I get me, the shopping bags, and the kidlet limped up to the front of the grocery store I still have not seen hair nor hide of Mr Important Handicap License plate (which by the way is in the BACK so how would I read his mind to figure this shit out when he could have, I dunnno, gone around until we cleared out, or he could have pulled along and USED HIS WORDS like I’ve taught various three year olds in my life to do?) get out of his car.

Remind me if I ever get bad enough to need a placard or plate to NOT BE A FUCKING ASS about it.

Lost? Click here for day one, part one in my Pieces of Flare series.

Huh. Kinda human. Still a bit worn and achy, but notso bad. I decide this is my last day of Aleve with a soda pop chaser. Some small burning joint pain, skin itch subdermal reduced to one elbow. Scalp dry and flaky, though my two usual lesions are still tender. They were open, raw and painful on days one through three. Dammit, forgot to tell Dr Cool, even though I remembered to tell her about the more frequent eye burning/tearing episodes.

I eat a healthy lunch (soup, veggie) instead of comfort food (read: a can of Pringles).

Hubby trades me kid duty, despite my protestations that I’m doing better. In exchange I “pick up” two cases of gear he ordered (I hold the car door open while a helpful shop guy loads them).

I get home and dinner is ready, kids are eating, and I get a shower before hub disappears with his new toys. I manage a low key meal, empty the dishewasher and start a load of laundry for the first time in a week.

Hubby tears away from the shiny at kid bed time and wrangles them down while I rest. Another movie, another night’s rolly fiddlely sleep.