August 27, 2015

Boring News

I took my car to the shop this morning, and they estimate it will take a week and a half to fix.  Holy moly.  I don't have the official estimate yet, so haven't been able to check when work can start.  The shop didn't look busy, though.  And I figured out how to get a rental car through insurance. I tend to be a "figure it all out at once" person, so doing things in sequential steps throws me off a bit.

I also finished a week of methylprednisolone, a corticosteroid.  Not nearly as interesting as the "meth" makes it sound.  My response is supposed to help narrow down future treatments.  In the meantime, I'm waiting for the hot and cold flashes, pred sweats and generally weirdness to stop.  After one day off I'm already feeling better though.

I did walk up to the park today, and read for a little bit.  It's getting chilly in the evenings so I can tell autumn is on its way.  The Pacific Northwest is having terrible wildfires so rainy cool weather is most welcome.  It is sad to see the days ending so much earlier--it's getting dark by 8pm!  But come December, when it's dark by 4pm, I'll dream of these long days.

August 21, 2015

Good news, bad news

First off, the good news: My appointment yesterday morning went very well!  It really helped having my mom there, for multiple reasons.  And even though I couldn't fall asleep then slept through my alarm and woke at 7:57, we were still early for the 8:30 appt :)

We have a plan, and I love having a plan.  The illness is being taken seriously.  A couple med changes should help direct treatment, and I return in Sept to figure out the next step.  What I really need is a control version of me, that would make this much simpler and faster.  Especially if I could create a mouse mini me--any mad scientists out there interested?

The bad news: I was having a lovely Friday when I heard that someone bashed my car.  It was a neighbor who was drinking and driving, and drove off afterward (but only around the corner).  Thankfully there were witnesses.  The police are involved, I've filed an insurance claim, and next week take it to a shop.  But it's still going to be a bother.  Thankfully no one was hurt.

Seriously: don't drink and drive!

August 20, 2015

Another rheumatology appointment

I have an appointment first thing Thursday to see my rheumy.  My mom's coming with me, to drive home how sick I am and to help talk to the doc.  I get so used to this being my normal that it's hard to get into the mindset of just how unusual my life is.  Then explaining that is almost impossible.

Some positive thoughts my way would be very welcome.  I just so exhausted by this fight.

August 5, 2015

Done with Humira

I saw my rheumatologist last week, and once again we didn't discuss whether Humira was helping.  Instead I'm to make a small tweak to sulfasalazine and wait two more months.  I'm so frustrated with my lack of control: there are so many things I want to do but can't, and too many times someone is gatekeeping my life.

I thought for a couple days and yesterday emailed the doctor to say I'm done with Humira.  It's not helping, it's frustrating, and it's creating a false sense that she's effectively treating me.  I tried it for 10 months.  I'm done taking it, and I'm done pretending that this treatment might be helping.

On the plus side, I finished binding off Tulpenkranz and started a new lace shawl.  Blocking Tulpenkranz is turning out to be a bigger deal than the bind off--I'll have to spend the day at my mom's to accomplish that.  Hopefully before Seattle summer is out I'll have photos to share :)
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