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May Update
Let’s see, what’s been going on in my life? Well, April was the best month I have had in about six months. I have been walking 1000 to 1500 steps a day instead of the 500 average in December. I have...
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May 12: My 20 years with Myalgic Encephalomyelitis
Tomorrow is International M.E. Awareness Day. Everyone should read this post by Mary Schweitzer on her blog, Slightly Alive. It is informative and moving and should light a fire in everyone’s souls to...
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Doctor Love/Hate
A few weeks ago, I had the follow up with the rheumatologist I saw in January. The one who came highly recommended by multiple doctors I’ve seen. The one who spent over an hour and half with me at our...
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June JuJu
I have had a bad backslide this month. It started with headaches in the first week of June, then bowel inflammation and bloating, then weakness, exhaustion and a constant buzzy/numb head… On the 10th,...
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The Locations Effect*
Here’s the thing. I don’t think it’s coincidence that it has been so humid in Seattle this month and I have gone downhill. I have been using the dehumidifier every day and I didn’t have to turn it on...
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Another Day In The Life
This illness takes away every bit of independence and control. My day today was ludicrous and stressful. In my mind, it is filmed in high-speed to the Benny Hill Show music. I made three back-to-back...
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Ninja Warrior
Watch this video. There was a time, before muscle loss, that I was 5 feet tall and 100 pounds. I may not have been a ninja warrior or even an athlete, but I felt like I was. I believed I could do...
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Going to California
After two years of being housebound, only leaving my house for doctors’ appointments, never going to a friend’s house, coffee shop, grocery store or cinema, never taking a drive to look at the ocean or...
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Going to California in Pictures
I will post about my visit with Dr. Chia and I will write about successful travel with this illness, but first let me tell you about the trip to California.
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The Other Shoe.
Whereas my preparation for this trip was incredibly thorough (I will write a post on that later) and the journey down to California went off without a hitch, once we got there, things went a little...
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Late to the Black Dress party.
I am always late to the party, but this time it was not because I spent too long on my hair or make-up. Nope, in fact, my hair has been in this bun for coming up on two years and I don’t own any...
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My Visit to Dr. Chia
Okay, okay, stop begging, I’ll tell you about my appointment with Dr. Chia. I can’t believe this took me so long to write, but I’ve been plugging away a little bit, day by day. I can save you some time...
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Your Possible Pasts
It’s 7am on a Sunday and, in a fit of irked defiance, I made myself a cup of fully caffeinated Barry’s tea with milk — real, whole, pasteurized cow milk — and sugar. I’m shaking like a leaf now and...
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Poisoning Myself.
Three days ago, after having Cromolyn Sodium in my cupboard for 19 weeks, I finally decided I was stable enough to add a new drug. Cromolyn was originally used as an inhaled anti-iflammatory to treat...
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Dear Family
September 22 Dear family, So here’s what’s happening. I had that terrible reaction to Cromolyn, but it continued for a few more nights than I would have expected. I’ve never felt so sick and urgently...
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Nothing Can Be Perfect
Not such a charm, after all. Every day that I’ve been in this rental, I’ve had the doors and windows wide open. It smells new, so I’ve taken precautions to air it out. After three nights, I finally...
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Día de los Muertos
I can’t remember what was on tv. I was listening casually while I sat, writing Christmas cards on the other side of the room. I had five half-boxes left over from the years before and I was determined...
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November Update
[Written Sunday morning:] Every morning I get up and vow to write some of the things crawling around my head and gnawing at my brain and then every day disappears into other things: cooking, feeling...
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Thanksgiving Tsunami
The last 10 days have been a bit harrowing. Different symptoms crashing down like waves each day. First let me tell you about our early Thanksgiving dinner with just the two of us. Everything was made...
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Oh, Christmas Tree. Oh, Christmas Tree…
We’ve always had a real Christmas tree; decorating it and wrapping presents to place under it has been half the joy of Christmas for me. A few weeks ago, I bought an Amazon Local deal: $20 for $40 to...
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