Hurty Gertie

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

Day nine.

Got up on time instead of at the last possible minute. Feed the kids a real breakfast instead of cereal.

Working and almost better, maybe I should write this shit down for next time.

I can wish all I want, but there will be a next time. Maybe I’ll be better equipped to handle it and thwart it then.

Almost no pain except my right hand and fingers. Weird random hip socket pain, minor.

No soda, no pain killers, awake and not yawning exhausted.

I’d call this one over.

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.

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

Day 7: Snake eyes again. Dragging through work, sloughing off almost all household responsibility. Kids don’t mind, they are used to it. :(

The crap du jour is sandpaper muscles and pain. Like someone rubbed the muscles about a quarter inch below the skin with sandpaper. Make it through with ice packs and a trip to Dr Cool.

How am I supposed to do a 100 watt job when I’m putting out less than a night light?

Dr Cool sees me, even though my the time she fits me in I’m starting to feel as though I might one day be human again.

We talk about this flare. She kind of confirms my second guess of myself, maybe I should have taken the shot a couple days early, the fever was a bit weird but might have been the flare. Absent other symptoms, the fever was likely flare-related.

She offers me a cortisone shot and I decline. The pain and exhaustion and wrungoutness is fading, albeit slowly. I’ll power through with NSAIDs and ice packs and a hugely supportive family.

She also offers me a B-12 shot, but frankly I’m nit a huge fan of needles. I counter with doubling my oral dose and she agrees.

When I get back to the office, I give a doctored (hah!) summary of my “elbow appointment”.

Home and rest, household managing around me.

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

Day 6. So tired. Everything hurts, cold tingly feeling gone. Just pain and sore muscles. Very fuzzy. Tired. Sad. Maddened. How bad would I be off of the anti-depressants? Walking around with ice packs, going to bed before the kids.

Is this how sick I was a year ago, when I’d sleep 16+ hours a day and yawn through the rest? I feel like I’ve been running a marathon and getting over an illness, hurt and not just a wrung out washrag, but one with all her fibers broken.

No idea how I can cover a day at the office. But I do, with furtive ice packing and complaints of tennis elbow.

Same story that night, in bed before the kids but not sleeping more than eight tossy turny hours.

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

Day 5. No swelling. I’m pretty damn tired, and due for a shot on my weaning schedule tonight. I roll over for an extra hour of sleep just in case.

I rise, gather my things for the day, have a snack, and hop in the car to get the kids. My left ankle was a little tingly, like when it’s been asleep from lack of circulation from sitting on it funny and it’s waking up. And cold. It’s cold while I am unbearably hot. Cranked the AC up.

But on the ride up, the feeling (like crunching a wint o green lifesaver and cold) keeps creeping up. Knee, elbow, shoulder …

By the time we arrive to get the kids you can feel the temperature difference on my left and right sides. Creepy. Might be due to the AC.

By the time we get home I’m pretty tired, though I manage to do a quick run to the grocery store. Then I rest, skipping my shot because I am not only hot, swollen, and cold, but I’ve got a low grade fever. Bed for me.

I spend a very uncomfortable night trying to sleep with some NSAIDs, as the medium joint pain from before is now pretty hard, moving to my feet and hands. No broken sticks feelings but not great.

I lay in bed for hours, resting, watching movies, snuggling kids. Cold soaks for my arms and legs. The joints ache, but my muscles are worse off, just burning and so sore.

Starting the anti depressant has had a nice side effect of feeling rested after 8 hours sleep and awake mentally and physically. I curse it now because I want to sleep for 12 hours and squeeze more rest out of my rest. I’m awake, tired, mad. Frustrated and helpless in this broken body.

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

Day 4: awake at 7, up at 8 to get the kids to lessons by nine. Not very swollen but getting there fast. Decide against working out and aim to stay cool, blasting the car AC as cold as it will go on my knees, ankles, wrists, and left hand.

When the lessons are ended, bundle kids in car to drop off playtime an hour away.

Drive half an hour back to home, sit a few hours in a theatre, then drive another hour for dinner. I make it through dinner, but used ice packs on my worst joints and AC on high out and back.

Bed down with my feet up a few hours, flat the rest of the night until I rise 12 hours from bedtime.

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

Day 2: More swelling, moving slower. I always seem to feel things in my weakest ankle first – first to swell, hurt, or give way unexpectedly. It started creeping up to my knee by mid day of a hot day.

That night I asked my husband for a physical assessment and he agreed I was swollen on the left. Massage, what I could feel of it, was comforting.

Day 3: My Friday. It was hot as heck again all afternoon (my desk thermom put the room temp in the high seventies outside my wool skirt and polyester blouse ). Roommate put on the air again (someone was meddling again?) and we got down to low seventies. I iced the heck out of my joints, claiming mouse elbow. But I was full body swollen, so unlike my last visit to Dr Cool. So much for remission.

I spent the rest of the night 7-7, resting and treating myself gently. Tired but not sleepy.

I write my posts a little in advance, so I didn’t know when I originally wrote the “is it all in my head / am I just depressed posts” that I was not faking it.

But that is also a common theme with me, of being the imposter, so not a surprise that I so handily forgot how bad I really was this time last year and would not remember it now if not for this blog (and mu small circle of friends locked one, but more this one as I dare not whine too much to them, and yes that’s kind of wacko of me).

Every so often, even when I’m feeling clinically remissive, I’ll be awash in tears and burning eyes, or my left leg will start to swell a bit and I’ll feel some dread that the good feelings were fake and I’m doomed to a life of PAIN.

Then I’ll wake up after a long rest and feel well enough. What is shadow what is real? Maybe both.

So day one was left ankle swelling. I went to bed a little early beduase I really felt like crap and assumed id be okay again in the morning.

Or I have been damn sick and am having my first damned flare.

Day by day updates to follow. Typing on an iPad so links later.

I actually met someone else who has PsA. There were people waiting in line so we couldn’t talk that much but she looked good for someone who’s been on the meds for 5 years. Gives me hope.

I’m still off of the caffination, still on the “Vitamin P” aka anti-depressant. A couple of screwy days as we adjusted it were bad, but I’m surviving.

One thing, though, I notice that my minor pain is there when I miss a dose (as is my exhaustion, ye gods the exhaustion, and of course the spirally doomy depression feelings) … I wonder is it remission if the pain is masked?

Was I ever really sick at all (as controversial as that sounds)? Is it my brain malfunction that is part of my depression instead?