Day 25

October 18, 2013 at 7:46 pm (Uncategorized)

Hi folks–

This is Rebecca’s husband Jay guest posting because after the five days for which we got to enjoy having Rebecca home, she had to get re-admitted to the hospital. She’s been in another full week now and we are hoping that the various drugs they’re throwing at her start doing something soon to help alleviate the nerve pain and other symptoms she’s suffering with. This is a nasty disease flare. Please keep Rebecca in your thoughts and prayers. She looks forward to getting back to this blog just as soon as she’s able.

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Suddenly It’s Autumn

October 10, 2013 at 8:07 pm (Uncategorized)

Suddenly it is autumn. The seasonal changes here in the North always feel precipitous. But the clicking over of the seasons to vibrant leaves and cold nights happened especially quickly for me this year. I had to spend 17 long days in the hospital in the depths of one of my worst ever neurosarcoidosis flare-ups. When I checked into the hospital, it was hot and almost sultry, as Montana’s usual Indian summer flexed its muscles and ran a few days longer. When I emerged from the hospital, it felt like the trees could barely hang onto their lurid russet, marigold, and pumpkin colored leaves. The wind drops a few degrees every night, and the branches clatter a little more loudly.

I know it’s been a long time since I’ve posted. I ended up taking the summer off writing of all kinds. Andrew will be 10 in a few weeks, and it felt like there might not be many more summer vacations that he actually wants to spend with his Mom. To be honest, I think I also felt like if I didn’t write about any aspect of chronic illness, I could magically be done with all things sarcoidosis. So instead of blogging, writing my book, or pitching magazine pieces, I did my best to keep up with my 9-year old son. We swam and went to different water parks. We went mountain biking together for the first time—and had our first simultaneous crash. We went on a family camping trip to Canada, where we saw grizzly bears, glaciers, miles (er, kilometers) of spectacular countryside. We read books together. I finally got to read Andrew A Wrinkle in Time, one of my favorite childhood books. We hosted many sleepovers, and delivered Andrew to many more at his friends’ house. We tended our tomato plants and lazed on the deck in the new chairs Jay’s Mom got us. Of course, I also kept getting my monthly chemo and ivig, in the hopes I could keep the sarcoidosis at bay.

I don’t think I “overdid” it this summer. I don’t think too much fun in the sun is what landed me in the medical clink for my longest ever hospitalization. That said, a couple of orthopedic injuries and a lingering sinus infection likely didn’t help quiet down my hysterical and over-reactive immune system. But I’ve been around the flare-up block enough times to know it wasn’t my fault that I fell apart.

I spent over 2 weeks in some of the worst pain and with some of the worst vertigo of my life. It got so bad that for a couple of days I could not stop throwing up. I am trying to look on the bright side. Maybe I lost a pound or two that will help offset the inevitable weight I will gain from the 3 mega-doses of 1,000 mg. of prednisone the doctor had to give me to try and quiet my inflamed cranial nerves.

I feel exhausted and broken. I know that’s normal. I am still in a fair amount of pain. I know that’s normal too. I can’t shake the sense of having “lost time.” But then, I guess that’s also normal, given I did lose track of who and where I was.

I would say it’s rebuilding time, but I don’t think I am well enough for even that yet. Right now, I’ve got to heal. Taking it day a time is wholly too ambitious for me. It’s back to living in each minute I have.

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