Hurty Gertie

The kids, in their limited capacity, understand. Some days momma hurts.

And in typical kid fashion, they go around at eighty miles an hour, being kids. (If it were eighty-eight and I hooked them up to a flux capacitor, would they go back in time?)

My youngest was no exception recently, spinning into the sharp corner of a metal outdoor chair, whacking up the brow good, terrifyingly close to the eye socket. Couldn’t scoop and cuddle, so I directed the bawler (and boy was that bawl earned!) to the “mom” chair, and cuddled away the tears and pain with hugs and ice.

“Feels much better, mama. All done.”

“No, let’s give it five more minutes.” After all, we’re two days out from picture day, I’d rather not send the child to school with foundation on to cover up a bruise … though better than with an eye patch on. Though that might make a jaunty spring picture, if I could find a stuffed parrot …

“Okay, mama.” A brief pause. “Is it all done now?”

After further negotiations, I got the wriggler to hold still and reduce the swelling significantly. But not before we’d switched cuddling positions at least five times, and, remembering our conversation about this being a hurty day, subjecting me to pain relief by maraca application.

They may not “get” it all, but they get the important parts. I hope, though, that there are less hurty days for them to have to notice, soon.

So getting my meds required even more survey questions, though these were more “history” defined so they could get a good picture of me and my health situation.

Let’s see (not in order, I was scribbling madly while Dee talked):

1. When were you diagnosed?
2. Your diagnosis is Psoratic Arthritis?
3. How frequently do you see your doctor?
4. Have you taken [your med] before?
5. When is your next shot due?
6. Do you have any of [your med]? If not, we’ll schedule a delivery.
7. Are you comfortable injecting yourself?
8. What other meds are you taking?
9. What are you allergic to?
10. Have you been hospitalized in the last 30 days due to your condition?
11. Do we have permission to identify ourselves and leave voicemails?
12. To whom else do we have permission to speak to in your family?
13. Can we call you every 2.5 months to set up delivery for the next set?
14. Are we delivering to your home or office today?

I think that covers it. They’re also going to send my my patient’s bill of rights and a welcome packet and a HIPAA thing and something to sign and send back. Just glad they called me right before I called them to see if Yoda and Dr Local had gotten back with a re-write for a 90 day supply.

Since I’m doing it in 90 day increments it’s costing me more – $5 instead of $0. Weird. It means less shipments for them, and more expense on me (fridging the meds for 90 days) but whatever. I can take my shot Sunday and be happy. Yay.

You’ve come to take me out again
And while my cold is softly leaving
Your aches and pains are creeping

Holey Moley I’m tired. I felt the whole “getting over a cold” feeling on Friday and tackled the yard, hard. Trimmed the straying edges of grass, whacked out some bad weeds, spread some mulch, and trimmed tree limbs (about twelve, weighing about 15 or 20 pounds each.

It helps that I had my eldest around to try sweeping (it was about to rain again so I did it more quickly than the young one could) and to haul those branches off to the pickup pile. We stood on the porch during lunch, watching the big green debris hauler come through and pick up our cuttings (sawings?) for mulching down at the county waste facility. It’s this great truck, with a dumptruck-style back and a gigantic claw that scooped everything up with two quick scoops. Well, most everything – the guy was showing off a bit and picked up a small branch about the size of a baseball bat with the huge claw; I should have brought out my camera.

But I am so paying for it today. Worth it, though – I needed the exercise, I needed the lawn work done, and I only have a short sweet spot between “feeling better” from a transient sickness and starting to really slide back into Psoriatic Arthritis pain again.

Shot night tomorrow night – yay.

So I mentioned recently, briefly, the “rebate” card thing going on with the special scalp shampoo the dermatologist wants me to use, but I’d like to expand on that.

What’s the deal, really? I mean, these medications are expensive – I shudder to think what my out of pocket costs would be, retail, for my treatments. I’ve been talking to insurance companies about switching should I start a job that offers insurance as a good benefit to me, and their language about pre-existing conditions is scary when you don’t “get” it. I don’t have to stop getting treated for six months, I just have to not have a lapse in coverage longer than 63 days (and the gov’t is giving a temporary payroll tax break to companies that employ people who have been out of work 60 days or longer) …

But anyway, we budgeted X for my monthly co pays, but with this “rebate” card we’re paying nearly nothing for one drug, a week’s worth of lunch out budget for another (but I just found a $20 coupon), and for one of the kids, a staggering couple of tanks worth of gas (but I just found a $60 coupon good for three refills).

It’s some kind of complicated accounting thing, but why? All I can think of is this – there’s a price point that people can and will pay for something, and an amount of time they’ll pay that. After that, they can pony up or go off of it. Like a dealer – the first hits are free.

That, and there’s no such thing as a free lunch.
(more…)

I know that suicide isn’t funny, nor suicidal ideation or anything else. The thought came to mind as a friend described the potential side effects of a new drug for Rheumatoid Arthritis. Bowel Perforation. LOVELY.

It’s scary thinking about what these drugs can do to us, and knowing what can or will happen if we don’t. And compared to some of my friends, I’m rather healthy – the exhaustion and pain of being tired and the cramping when my joints hurt is bad, but I’m not bad enough to need pain meds any more. Not that I was on anything heavy to begin with. What’s a little nausea and needing to avoid alcohol. I don’t drink much anyway, so no hardship.

But my kids can see when I’m in my exhausted phase. I see their grave little eyes over the kitchen table, sizing me up. I don’t want that look. I don’t want to be that mom. Shot day is coming soon. And I like how my swelling has responded to all this; gone down, though some of that has to do with my allergy control. Sorry, digress. I don’t want to be that mom. I don’t want them to look at me with those eyes. Wah wah sucks to be me. Just the long term exhaustion talking. It’s not bad, it’s been worse, and shot day is coming, yay.

Or “cold”? My allergies have been going bonkers, I think, and it’s creeping into my chest and I feel like crap. I need it to stop – I don’t want to go off of the drug I’m on. I hope it’s just “one of those things” and not a series of continuous illnesses that would mean I should get off of my biologic. This is the ‘gentlest’ of all of them, as far as I know.

But my head is fuzzy, my nose won’t stop dripping, and I’m tired. Not too much different from when my nose isn’t dripping (causing phlegm, crackly chest, and wakefulness from the coughing). But it also means my hand works. Go figure.

Still job hunting. A “look see” interview tomorrow with a recruiter. Can’t hurt to be registered with a few as “available”. Actually had one contact me about a job I hadn’t applied for, just in case I was qualified. But I’m not – and it’s not in an industry you can “fake” it in, aka, study up for a month on a new tool and away you go. Nice to get a ping, but I need a couple of years in specific computer training and such to even think about it.

Though, oh man. Maybe they didn’t want me. Blasted social media. It’s the same industry my spouse is in. Looked me up on the chance I know all his stuff, too, or might pass it on to him?

LOL. Who knows. I just said “not qualified but thanks for thinking of me” and passed it on to a more qualified colleague.

So I’ve got another hole in my head. Had another scalp breakout, and went to see someone who actually knows about skin as a specialty, a dermatologist.

Took a history, scanned in my driver’s license (and that horrible picture). Looked at my scalp and listened to my symptoms. Found a spot and took a sample (ouch) and I guess we’ll see.

They were supposed to give me a “rebate” coupon for a prescription shampoo, but they ran out. It’s like with my biologic – I pay X per treatment, but then I get this “payment card” from the manufacturer to bring my cost down to almost nothing. What’s up with that?

Looks like it is “just” seborrheic dermatitis so, now what. It is PSA? It’s not? It’s both? SB on my arm? If not, then what is that patch? And the stuff on my neck and eyebrows?

So what’s the deal, PsA or RA? Since I “don’t” have psoriasis, then it’s RA. Mild so far. Either way, it sucks.

Off to talk to the insurance company and Drs office to get my shot meds (no, don’t have them yet …).

but not inclination, now that I’m happy with my little brood, I wondered a few months back about the menstrual cycle and flare ups of auto-immune arthritis (be it psoriatic or rheumatoid). I asked one of my RA friends who is as regular as a metronome, and she agreed. For a lot of women (I’ve researched more since then), the menstrual cycle really makes the symptoms worse. And I’m having a bad week and some familiar female cramps …

And this is where I’d want to get into a study. Being of child-bearing age, I should have my regular menstrual cycles. And I think I do. Except for the fact that I don’t generate menstrual fluid/lining any more … so the other option is to take my temperature, similar to that “Taking Charge of Your Fertility” method that works for a lot of women. I know she didn’t invent it, but she popularized it among my age group.

But what are some of the more annoying things about being sick? Not sleeping well. Disturbed sleep. And taking my own temperature every morning can lead to odd results. Low temp, high temp, falling back asleep with the thermometer in my mouth. If there is a way to chart wrong, I’ve likely done it. Well, okay, I never mixed up the ear, mouth, and rectal thermometers …

This is going to get TMI …

In addition to my absolute slothful sloppyness that is part habit, part exhaustion, even when I did do all that growing and shedding, my cycle wasn’t what you’d call particularly predictable. I could go the normal weeks or odd months between cycles. Thanks to advances in modern medicine, I know now that this is called PCOS (PolyCystic Ovary Syndrome) and is perfectly normalish, if hellishly painful and annoying (seriously, passing clots the size of golf balls when I know that there is no way I could be pregnant so it’s NOT something else?).

And further thanks to you, modern medicine folks, I no longer have to stay in when I’m attacked by the slough of my own uterus. A short surgical procedure and I was done with my Diva Cup forever. Though I wonder if that surgery sped up the day that I came under fierce attack from my own immune system.

But – hormones + auto-immune disorder = more pain on some days? I’d love to find out. I don’t have the Five Hundred Pounds to find out with a DuoFertility monitor, but maybe I can persuade them to let me design the study by trying it on myself for a year or five at no charge …

Or folding some laundry. Or joining this site … I wonder if they have a Psoriatic Arthritis group? Wait, they have a nice privacy policy, but I’m blogging anon for a LOT of reasons. Argh.

I really should scrounge around for more psoriatic arthritis blogs, listening to my friends talk about rheumatoid arthritis isn’t as useful as finding someone with psoriatic arthritis might be.

A quick search led me to a few new reads:

http://understanding-psa.blogspot.com/ (updated every so often)

http://www.everydayhealth.com/blog/christa-life-with-psoriasis/ (last post in 2008)

http://arthritis.about.com/b/ (general health and arthritis blog)

http://talk.nhs.uk/blogs/arthritis/default.aspx (interesting random look at various kinds of arthritis patients in a managed health care environment)

Then again, when you see most of my post are whines about how bad I’m feeling, I’m not surprised there are no fascinating blogs out here. Mine fascinates me only when I’m not bored of my own self.

Most everything else included spam blogs (that just skim keywords off of one place and make them into their own ad-ridden pages) or news articles or stop talking about how learning about rheumatoid arthritis isn’t as useful as learning about psoriatic arthritis and just listen. :)

Did find these, though:

http://stanford.wellsphere.com/arthritis-article/new-genetic-test-may-predict-psoriatic-arthritis/924109

And it reminds me I must get officially someone to look at my scalp re: psoriasis. I’ve never had an official diagnosis, just rheumatologists looking at my dandruff and calling it psoriasis. I’ve got the internets, people. I must be really lucky that it’s so mild and only on my scalp, eyebrows, and neck (and a little bit on my arm).

Pharmacies, that is.

On the one hand, patients might be annoyed if the pharmacy contacted them to let them know that the Drs office had not yet completed the paperwork.

On the other hand, I’m annoyed that the pharmacy didn’t call me to tell me the prescription I waited too long to refill was now ready. I probably could have picked it up yesterday.

With the absence of my shot meds, though, I don’t know if Zyrtec OTC is helping more or less than my prescription allergy med.