September 26, 2016

I love nurses

I went for a Benlysta infusion today. It went very well, and I enjoyed catching up with Awesome Infusion Nurse. I told her about my rheumatologist saga. Mine is still out on medical leave, with no idea if or when she'll return, so I need somebody. Options on Medicaid are limited, and most rheumies want positive labs (which I don't have).

My PCP met the clinic's new rheumies and suggested I see one of them. Weeks later and something was holding up the works. I called and nothing changed. But Awesome Infusion Nurse spoke to the scheduler today and voila! I see a new rheumy on Wednesday. That's in two days, which is astonishingly quick.

Today's infusion was located in a sunbeam :)
I'm still sad over losing Jake, but adjusting. The house feels emptier without him.

September 13, 2016

Grief Salad

Jake was put to sleep on Sunday at home. Holding his limp sedated body then watching the pink leave his nose was so hard. I'm going to miss my fluffy buddy for a long time


I made a big bowl of bean salad on Saturday so I'd have something easy to eat this week. When my head or heart are full I forget to eat or can't be bothered. This salad doesn't even need heating.

Grief Salad

2 cans black beans, drained and rinsed
1 can garbanzo beans, ditto
1/4c couscous, rehydrated in 3/8c boiling water
3/8c white wine vinegar
~1/8c olive oil
2 bell peppers, chopped
1 medium red onion, chopped
2 ears fresh corn, sliced off the cob, or frozen white corn
chopped cilantro to taste
salt and pepper to taste
hot sauce to taste
Optional: juice of half a lime (reduce vinegar accordingly)

Serve over arugula if desired. The flavors meld overnight and it's even better the next day. If you have extra vinegar at the bottom of the bowl try adding 1/4c more rehydrated couscous.

Nothing in this recipe is hard or fast. I used frozen corn this time and kept adding until it looked like a good amount. If you've been too sparing on salt and hot sauce it will taste sad and bland and you may begin to question your life choices. Do not fear, continue seasoning and all will be well.

September 3, 2016

Six years, 400 posts

Happy sixth birthday, blog! I started this blog to share sewing projects plus some random thoughts. But my health got worse--hello autoimmune disease--so that's become the focus. As interests and hobbies are stripped away I realize just how important people are. Any energy left after doing the things that need done, that's how I spend it.

But 400 posts? I had no idea I had that much to say. I was reading some old posts and realized that I'm pretty much the same person now. The more we change, eh? Maybe I've written myself out--I can't think of anything else to say ;)

August 30, 2016

Love and Loss

Part of caring is having to grieve losses. Jake saw the vet two weeks ago for what turned out to be lymphoma. While he's still doing well on prednisolone I know it's only a matter of time. I'm alternating between enjoying normal time with him and worrying about the other shoe dropping. He's still breathing and eating well though. There was some trouble when he discovered the bitter reality lurking at the center of pill pockets. But we've successfully weathered that speed bump*.

To balance this out, things continue well with my sweetie: it's been observed that I am twitterpated. I half jokingly expressed concern that I've developed an unhealthy attachment to him, because I will be sad if he's gone. He replied that he's not going anywhere. And this is a man whose words and actions match!

I've also been having a small autoimmune flare, with increased joint and muscle pain and costochondritis. Yesterday was infusion day so hopefully that kicks in soon. I've had an intercostal muscle spasm since last Tuesday and would very much like for that to stop. It makes breathing hurt.

Jake's always had expressive ears


* I gave him a few empty pill pockets to break the mental link between them and nasty bitter tastes. He still gets pred in a pill pocket. But the gabapentin capsules are pill pocketed then he's forced to swallow. That's not his favorite but it's easier than forcing the plain capsule on him. And better than him crunching down on the capsule--blech!

August 26, 2016

Chronic Illness Portmanteaux*

There is specialized vocabulary associated with chronic illness. Painsomnia comes immediately to mind: a combination of pain and insomnia. It even has an Urban Dictionary listing. Or when you randomly start itching, those are the histameanies. Histameanies and I go way back and they're the reason I always carry Benadryl.

Maybe you've heard of hangry (hungry-angry) but paingry was new to me. And watch out for hangry paingry! A friend introduced me to the term pain coma. That's where you hurt so much you become non-functional. I lose the ability to make decisions or speak during pain coma, which is bad news if I'm out and about. Chronic illness forces you to learn just how far you can push yourself. I try to always have cash, for example, in case I start to crash and need to pay for my meal or drink and skedaddle.

There's also much discussion of spoons. I have energy spoons, joint spoons, braining spoons, social spoons, talking good with words spoons, and so on. Sometimes I wonder why I'm so fatigued on a particular day. Then I remember that oh yeah, I'm in big pain. Most of the time I forget and can happily go about my life. Happy means the same thing in both the chronic and healthy worlds.


* Why is the word portmanteau so long? Shouldn't it have an abbreviation for itself?
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