January 26, 2016

No Pity Zone

I had a dental cleaning today and met the new hygienist. He asked if I'd taken the afternoon off work, and after I explained my work situation he started saying how hard that must be, he can't imagine, his complaints are minor in comparison. He was trying for empathy but he overshot. I don't like being pitied and I especially dislike feeling pitied while I'm trying to be productive.

This is my normal life. Those are the five most important words I can say about life with chronic illness. I know you can't imagine it. I can't imagine being healthy so I guess we're even!

Focusing on my illness to the exclusion of me as a person is insulting. If you really want to help, just have a normal conversation with me. Treating me like a regular person is a compliment, trust me.

January 22, 2016

Benlysta Update

An update on my Benlysta journey, largely because I'm not seeing blog posts about side effects more recent than 2012. People are still taking this med so I will share my experiences so far.

After 3 infusions in 4 weeks my benefits are:
  • Reduced fatigue(!!!!!!!)
  • Reduced tissue inflammation
  • Reduced skin irritation (eyes too--contacts every day!)
  • Reduced joint pain

Side effects:
  • Insomnia*
  • GI upset (worse after infusion)
  • Nausea
  • Dizziness
  • Feeling wobbly or shaky (not new but worse)
  • Headache
  • Increased urination
  • Restless leg
  • Fever (mild, only after the first infusion)
  • Ear pain
  • Craving for carbs
  • Olfactory hallucinations
Some of these side effects, like restless leg and headache, only appear in the evening. I have no idea, circadian rhythms and antibodies I guess? I don't have a PhD thus haven't tried to research it.

Caveat: The improvements after the first 2 infusions wore off before the third infusion. So I'm back to sausage toes and cranky eyes. But I have faith that the improvements will last longer as I stay on the med. I really hope they do, because infusion #4 isn't for a month.

*Insomnia thankfully has eased. I'm still taking 25mg Trazodone to stay asleep all night but my ability to fall asleep is back to normal. This was the side effect that could have driven me to stop Benlysta so I am very very very glad.

January 20, 2016

Hawaii Vacation Part 2 (of 2)

I am back home from Hawaii, where I had a fabulous time!

Kona sunset watching/beach knitting

The Benlysta seems to be working, I had an energy bump that lasted until the second-to-last day! Realistically I should call it a period of diminished fatigue, but energy bump sounds better. Also my skin was less irritable and overall I was less swollen :) Ankles-not-cankles, woo!

But back to Hawaii:

Gecko on my balcony!
Warm and breezy
INSIDE the Kona airport
I would enjoy flying more if all airports were like Kona's.

Coffee plantation
Kona Brewing Co's Big Wave Ale with pizza
I tried several varieties of Kona Brewing Co's beers. My favorite? Da Grind Buzz Stout, which they don't appear to bottle. Black Sand Porter was also quite tasty.
I saw people drinking Bud Light--really? REALLY??? Let me buy you a Longboard.

The sunsets were amazing
Sunsets were beautiful, also a time when I could hang around outside without sunscreen ;) It did confuse me to have the sun setting at 6pm--the warm weather tricked my brain into thinking it was summer, when it stays light here until after 9pm.

January 10, 2016

I'm in Hawaii!

Aloha! I flew into Kona, on the Big Island, last night. It's so beautiful here, and warm and sunny and green. But once again I'm wishing my body contained more melanin ;)
Best of this morning's bad photos

This morning, albeit not first thing, I headed to the beach. I sat on the beach for a few minutes to warm up before jumping into the slightly chilly water. There I got chatting with another woman and made a friend :) Even better, she has tomorrow off work and wants to hang out. Meeting a local on Day 1 is fabulous!

I plan to walk around more and explore later today, there's quite a bit within easy walking distance. This morning's lobby coffee shop latte was disappointing, but I found a Yelp 5 star joint close by :D

View from the hotel balcony

Mahalo for reading. I'll have more photos soon.

January 6, 2016

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.

  • 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 :)

January 5, 2016

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
Nausea and loss of appetite

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