Hurty Gertie

This is not a paid endorsement but I LOvE Land’s End shoes.

I was so afraid many years ago when they were bought out that they’d nuke their guarantees, and the quality would suck (well, on some things it does) but I’ve been very happy with most things I’ve gotten from them (and gotten satisfaction or money back on the other).

It’s tough to find comfy shoes when you have Rheumatoid Arthritis or Psoriatic Arthritis; when you have bizzare mondo feet like mine it’s even harder.

But their Trekker Mary Janes rock. I’m in a semi-casual work environment so they are perfect for me. Some days, just knowing I don’t have to wear heels and my work shoes won’t hurt is relief enough.

Not that I’m not thankful. I have a lot to be thankful for. But I’m not doing a turkey and this and that and all the “heavy lifting” that goes with it.

I can barely keep up with my own life, much less a massive holiday meal (even simply coordinating it with other chefs doing things). So I’m thankful that I have family and friends to spend it with, even if it means we order in Chinese Food or nuke up some microwave burritos.

Don’t mind me if this blog goes quiet the next two weeks. Family and celebrations abound and I have some light hors’d'oveurs to pour from a bag into a bowl and a couch and footstool clamoring for my attention so I can read to and with the kiddos while the other grownups cook their wonderful hearts out.

While I am not missing the sixteen hours a day of sleeping I do wish that the general pain wasn’t creeping up on me so fast some times.

Sit down to rest for a couple of hours, I can’t walk when I get up (muscles tight). Doc Local gave me a pill for that but I can’t really tell when it’s working.

And it’s hard to predict. Some mornings I have to flext my muslces for 20 minutes before I can safely walk to the bathroom, other times I can practically pop out of bed.

Other times I’ll sit down for 30 mintues or more, and then be in the same position of not being able to go anywhere or my knees giving out or wobbling dangerously fro and to.

I can cover in public (movie, meeting) by gathering my stuff slowly or stopping right after I stand up to chat or to watch the credits or something while I get my muscles to WAKE THE HECK UP.

What does it mean (besides REST MORE)? I can’t actually tell until I get up sometimes.

I am not a summer person at all. I never have been, and even more so now.

If I’d moved here or visited here in the summer all those decades ago, I would have never stayed. Fall and winter visits tricked me into thinking this place was livable. The first time I took a short walk and had trouble breathing because it was summery out side I should have started packing my bags.

But then again, I would be bereft of the lovely family and friends I have now …

It’s a fine line reassuring the kids. Trying to notice when they are noticing and reassuring them in an age-appropriate way. Trying (still, yes) to hide some of the worst of it. Which a year in isn’t as bad as it was.

They both worry to some degree. And it’s weird trying to break down explanations to their level. How the body is supposed to work. What mine is doing instead. How the medicines help. Why I’m more cautious about sharing food.

They need RA and PSA books for kids. Probably are out there but I’m too lazy to go looking for now. Maybe it’s better to let my kids write them, too. Get their own feelings out and expressed and assured.

Well, we’re travelling soon. What to pack? What to pack?

I have the usual lists of clothes for events, washables for daily play, toys for the enforced sit down and be quiet time …

But I really should pack my nebulizer. I always get sick when I change latitudes in the winter. I just hate hauling all that weight.

And where to pack it? Carry on? Checked luggage and hope it doesn’t get lost? Ship it ahead of time and hope I don’t need it the week before we go and the week after we return? And that they don’t lose it?

I’ve got to get a refill while I’m at it. I don’t want to take a whole box of meds with me but I think I have to. I’d better remember to ask the pharmacy to put prescription labels on the individual foil packets for just in case.

As soon as I figure out who what where and HOW.

Tell them our phone number and names and have them get help. Here is what mommy’s medical medal looks like, this has the information they need when I’m sick and can’t talk for myself.

And I gave a slightly more age-appropriate heads up to my grown up friends who are in the know about my illness. Sigh.

I still am not happy with the quality of it. I might go buy another brand and stick my subscription number on it, or I can suck it up. It’s not a vanity plate for crying out loud.

Of coupons and rebate cards, what are the drug companies getting out of it? Just marketing data?

Making us and doctors comfortable enough to try the meds and stay?

Have a way to “lose” money so they don’t appear to make such huge profits?

I’ve had three colds this year. Not too bad, considering my immune state after about nine months on this stuff.

But I am parent to two walking germ incubators, and I deal with a small group of the public. Germs happen. I’ve been in a few situations where I was dealing with people, hugs and hand shakes and then they tell me they’re sick or start hacking.

I need to start paying more attention to their snotty noses.

I can’t remember (fog brain, brain cloud, take your pick). About a year since I realized how down hill I had become.

I whine a lot about how poorly I feel, but comparatively it’s not that bad. I’m putting in a full work day, though the house is still lacking. The kids are getting some more of my awake time. Need to work on other things but things are much much much improved over a year ago.

All hail the power of science. I could be significantly worse. But my PSA is under control enough that I’m (for now) working full time, yay. I’ve got to keep it up as long as I can.