Another Blanket

I finished this blanket before New Year's, but my photos were bad. The recipients were kind enough to take more pictures in their non-blue drenched home and I present: 

New Rings Grow Warm

I worked on this pretty consistently for four months, not-so-cleverly beginning a month before the wedding. The edging, while gorgeous, was grueling: it's patterned on every row and is almost impossible to memorize. This was nicknamed the Hell Blanket before it was done, but once blocked it sat there looking so pretty and impressive that all was forgiven. And they loved it :D

A new sense of pride

Yesterday I finished another Mini Med School series. I attended all six lectures this year, in spite of pain and overwhelming fatigue. We receive certificates at the end, given with the joke that we can frame them. In previous years they had only served as a reminder of how much I've lost to illness so I filed them out of sight. 

But this winter I began to see these certificates with new eyes: I worked tremendously hard to earn them. The merit lies in what I overcame, not in what was achieved.  I refuse to let illness crush me and this is proof.

I will be framing and hanging this year's "diploma" near the others from 2013 and 2015. They demonstrate that the seemingly mundane can be remarkable.

Road Trip

In late Feb I took a short trip to Centralia to visit an internet friend. It's a pretty short drive, 1.5 hours, but that still took a toll on me. I planned two days for the visit and got a motel room, an excellent plan.

We had a tea party the first afternoon, then sat and talked for hours. It's so nice to meet and talk in person with someone you have so much in common with. We're both knitters and also have chronic health issues.

The next day we walked around historic Centralia, it's a cool place. There was a little park full of blooming crocuses!

Her husband was hospitalized a couple days before my visit, so before I left town I stopped to say hi. Thankfully he's feeling better and is back home now. I'll just have to make another trip to see them both at home :)

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.

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.