Hurty Gertie

And my shiny new full time desk-flying job and gold-plated health insurance … maybe I won’t spend 7.5% of my pre-tax income on meds and bills this year … woohooo!

It’s been quite a ride.

I still have tough days but I feel able go to beyond a long-haul clerical job. I’ve even applied again for jobs in my industry of desk-flying as well as started cultivating professional relationships that might turn in to long-term contracts. And it feels like that all is paying off if any recent conversations are good indicators …

So I did start “Vitamin P” aka an anti-depressant after all. I have very little guidance with this, and I certainly don’t want to add fuel to the fire that the pain is all in my head and some good drugs would “cure” me.

If you’d asked me why I am taking it shortly before I started, I would have answered:

Because I'm still feeling some twitches, no matter how close to "Clinical Remission" I might be. And I'm so tired. SO TIRED. SO TIRED. And drinking soda by the truckload.

But then I stopped cold turkey the day after I took my first anti-depressant. Bam. I didn’t need soda to stay awake any more. I still had random yawning attacks where my eyes would well up and I’d have a good “cry” aka tearing session that had nothing to do with being sad, just my eyes hurting and tearing massively like a cry but just flushing out my system. Trust me it’s really damn weird.

I’ve been on it a few weeks, and it’s like I’m a new person. I don’t have the little twinges of pain, much. I have so much energy it’s insane.

Sorry, poor choice of words.

And yes, I was (am?) depressed. Before I swelled up all bizarrely in Nov 2009, I was going to go talk to the Cool PA about my tiredness and what I could no longer deny was depression.

Instead I swelled up like a bad brawurst and went on biologics instead.

But then I hit a wall. I was caught in a loop where I was as good as I was going to get, so I finally went and got the meds.

I’ve had to do some adjustments, as after the first month they weren’t working as well, tweaking the dose and formulation with the help of the Cool PA.

We’ll see how it goes …

Clinical remission in PsA can be conceptualized as a complete absence of disease activity, with no signs or symptoms of active disease.

Clinical remission in PsA requires absence of disease activity in all facets of disease. This definition allows for continued treatment, if necessary to maintain response.

“Near remission” or “low disease activity” are different from “remission”, but might be an appropriate goal for individual patients.

The measurement of the various facets of PsA disease activity should utilise outcome measures and instruments validated in PsA; until validated instruments are not available, surrogate measures developed for other diseases can be used.

I love using the code tag for that – I know an indent would do but you know, sometimes I feel like my doctors and these websites are speaking to me in code. Here’s my cite.

That’s why I lurk anonymously on RAWarrior. Even though PsA isn’t exactly the same as, and in some way “easier” than RA, clinically they are very similar. And there frankly aren’t any PsA bloggers out there, and I’ve only “met” one other patient – on the phone randomly and I never spoke to her again.

So this is where we think I am. Clinical Remission. I’m starting to stagger out the TNF shots, among other things, and we’ll see how I react to it. Dr Cool kind of waxed generally about a patient who learned to recognize when a flare was coming and would give herself a shot just before it really took hold, but I’m not sure if that was meant to be illustrative or anecdotal of things to “look forward” to.

But if I’m so damned tired, why is she calling it a remission?

I didn’t start taking the laundry list I posted back in December. Lazy, busy, whatever. I was already starting to feel better, so why muck with it?

The new year and holidays were quiet and busy, with lots of travelling. I met the new year with full doctor’s appointments and fun times poking and prodding. Everyone said from Dr Cool to my parents to my husband to my friends that my swelling was down, and I could see it.

My pain was down. Everything except that stupid little thing of needing 10 hours a day of sleep and tons of soda to keep me going. I know I’m addicted to soda – the next task is to see how or if I can kick it. Losing those calories won’t hurt me, either.

Well, we finally got our new insurance squared away and I learned many new things.

First, out of pocket is EXPENSIVE. To get my allergy med and one of the kid’s meds out of pocket while we waited for the insurance information cost over four hundred dollars. I kept my receipts, assuming I’d have to go through some reimbursement administrivia once we had our card numbers (we were covered but had no billing number).

Turns out, you can (at least with our plan) go back to the pharmacy and have them run things through again and refund what you paid. WHEW. That brought the cost down to just over $100.

The pharmacy tech clued me in on coupons (I have teh dumb, I forgot) and I went back the next day having scoured the internet.

Final monthly co-pay? $35. Yay for now.

I still have the “rebate” card thing in effect for my shot meds (I still have some from a previous shipment) so we’ll see if that is in effect the next time I need to re up my meds.

Between worries about power outages and how I’ll have my meds shipped to me, I haven’t decided how to handle that “publicly”. Work doesn’t know I’m sick but would they be nozy if I had them sent there? Will my local pharmacy accept delivery once a month?

And the one question I can’t get any one on the PLANET to answer (well, one of two) – does this count to my medical deductible for the year or is this a separate pharmacy benefit deductible I need to meet? And what is my “year”? A short “year” of three months until Jan (scaled deductibles) and then another short year till our year resets in Oct (scaled deductible)?

So damned confusing. If I have to pay then I have to pay but someone tell me how much!

I whine and whine about people not knowing what Psoriatic Arthritis is, only a few people being able to nod along when I say “It’s like Rheumatoid Arthritis but less hurty,” and I get my wish, a PSA twin.

Of course, she can’t really respond here since she was doing her job, but I’m *waving madly* at her anyway.

So after my last post about finally getting a medic alert bracelet, I went and got one, from a company that does all this registry and emergency info stuff.

See, the web site is kind of wonky (or maybe I am, PSA fog!) and I had to call in because I couldn’t get my address to work right. I told her I had PSA and she told me she did too. PSA SQUEE! I told her about The RA Warrior who a lot of people told me about, and we chatted while her computer crawled along about how no one ever knows what it is …

That felt so good. Yay! I mean boo that she has it but YAY!.

And now I’m all set up with my bracelet. Go me!

“Join the diet club!” “Join the running club!” “Join the volunteering club!”

Ack. I don’t want to diet with them, running is on hold temporarily, and volunteering, well, we’ll see. I prefer to diet on my own, and I’m not into group exercise.

But I realized I seriously NEED to get a medic alert bracelet. I didn’t want to, but what happens if I get hit by a forklift or airplane (it could happen, I’ve been too close to too many low flying airplanes, thank you very much)?

How far can one fan-dance a friggin medic alert bracelet, though, without inviting too much inquiry? I know it’s something broken in my brain to feel bad or embarrassed and weak about being sick, but I’m not over it yet. (more…)

I headed out to check the porch for the sixth time today (I always have a chore or reason to go out so I don’t feel silly for just poking my head out) and picked up the mail. I could hear the delivery truck down the street so I stopped under the little tree shading the front of the yard and opened today’s letters. It was indeed my delivery truck.

So I have my second shipment of a 90 day supply of my shot meds. I’m a bit surprised they actually came. I called the dr’s office on Tuesday to start what I assumed to be a painful order process. On a whim, having heard nothing since then, I called the pharmacy at 4:30 yesterday. They assured me they could ship for today.

And here it is – on a day when I happen to be home and off (rare). Now to go stick it in the fridge …