2015 Wrap-up

Last year was a good year, overall. Sure it was hard, but I had some positive experiences and feel like I got my groove back toward the end. I see friends talking about how awful their 2015 was but I don't have antipathy toward mine, I feel like we made it through together.

Highlights:

• Trained and started co-leading a local support group. It's going very well.
• Took a few trips
• Made new friends, online and locally
• Finished knitting two blankets!
• Failed Humira, failed Simponi, started Benlysta (this is good, trying new things is a positive)
• Adapted to my new illness level and was able to start doing more

Thanks for reading along with my journey. Hopefully 2016 is full of bugger and better :)

All About Benlysta

Yesterday I had my second Benlysta infusion. It went very well: I wore a tiara, a warm handknit sweater, and brought a warm blanket (cold room + cold IV = double cold Summer).

A very nice person in my local Buy Nothing group gave me this beautiful tiara

The infusion process:

IV is started (easy peasy when you have an excellent infusion nurse)
Benadryl is run (caused phlebitis last time so it was diluted before being run w/ saline)
IV machine beeps a few times, for various reasons.
Benadryl makes me dopey so I insert headphones, wrap up in blanket, and relax
Benlysta is started--the main event!!!
Benlysta takes an hour so I fiddle with my iPad, listen to music, and chat with the nurse
Few more interspersed machine beeps

Then it's done: IV is removed, arm is wrapped, and I go home

This week was extra special because the wrap matched my sweater :)

So far my side effects are:
Post-infusion fatigue, though it hasn't kicked in this time (Yay!)
Insomnia. I doze in bed for hours but can't fall asleep before almost crack-of-dawn-o'clock
Headache
Nausea and loss of appetite

I'm hoping these fade as my body adjusts to the new med. Especially the insomnia.

Christmas Miracle

I've mentioned that I have a friend staying with me over the holidays. Unfortunately, this friend got a cold starting the second day. Very sad :( But even worse is that I'd just started a new biologic, which greatly increases risk of infection, and I already get sick at the drop of a hat.

But...I didn't catch the cold! It's amazing!!! I wasn't sick for Christmas, I'm not sick for New Year's Eve, I'm not sick and thus have to skip the second Benlysta infusion. None of it. Now that is an excellent way to start 2016!

Christmas Came Early

On Sunday my friend Adam came to stay for two weeks! I'm so excited to spend this whole holiday with him :) We met online, through a mutual love of knitting and language nerdery.

And today I started Benlysta infusions. I don't know how well this will work but it's going in a different direction than previous treatments. It's administered via IV, over the course of an hour. Before the medication they give IV Benadryl which made me super dopey--I stopped being able to focus my eyes. I get infusions every two weeks x three, then every four weeks. Injecting myself is a breeze in comparison.

It may seem like I'm always waiting for one treatment to work, or waiting for the next step in treatment, or just waiting for something. And that's not an illusion, that's my life. But this Christmas I got companionship along with more waiting but in a different direction. And those are pretty amazing gifts.

Dating Pro Tips

Inspired by my buddy Justine, aka The Snarkaeologist, some dating pro tips:

1) When someone says they don't do drunk texting, don't belabor the point.
2) Don't forget the name of her cat then get jealous of said cat.
3) Don't wake me up. Definitely don't wake me repeatedly.
4) If you disobey these rules, be prepared to become a laughing stock to my friends.

Friday night...

and Saturday night