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135Journals Blog: The strangest thing happened to my fingers and toes when I fell asleep

3 Aug
If you look at the top joint of my pointer finger, you can see it curves to the left :((

If you look at the top joint of my pointer finger, you can see it curves to the left :((

I thought I was having a nightmare Thursday night. In the middle of the night, I had a disturbing feeling that somehow, in the middle of the night, the joints in my fingers and toes had started tingling. Weirder yet, I had the odd sensation of feeling as if some of my toes and fingers weren’t rubbing together right. It was very odd, but too complicated to figure out the meaning. I told my dreaming self, “That nonsense had better be gone by the time you wake up.”

At 6:30 a.m. I woke up for real. Thank god, I thought. I don’t need creepy dreams like that. It’s scary enough to have an inflammatory autoimmune disease (a form of spondyloarthropathy, similar to rheumatoid arthritis) that causes all kinds of strange symptoms such as random backaches and foot pains and weeks of draining fatigue that make it hard for me to do more than one activity a day—such as pick up more medicine at the drugstore—before I have to return to my Fainting Couch, shaky and weak.  It was challenging to adjust to giving myself two injections a week of strong drugs that lower my immune system so that it doesn’t spend all the time attacking itself (although it means that if I get a cold it could turn into pneumonia in a finger snap).

The hardest part is adjusting to being limited. To want to be fun and energetic, to do more things with my delightful, energetic husband, Brian, but just fall short. It’s hard to adjust to the fact that what I intend to do and what I can do are two different things.

Just to reassure myself, I held up my hand.

“Crap.”

Yeah. I wasn’t having a nightmare. My joints had swollen, shifting my bones, in my sleep.

I’ll remember that moment for a long time. The pallid early morning light coming through the beige curtain, the dark red wall, and in front of it my left pointer finger, curving to the left like a little scythe. Maybe not as dramatically. Okay, maybe the curve wasn’t as dramatic. But—what the hell? Seriously, what the HELL? There was my finger, part of my own body, twisting to the left. Overnight. And the thing is, I think I knew something was wrong the second I woke up. I could still feel the tingling.

I lifted the bedcovers and looked at my feet. All of my toes seemed to be tingling, too. But my right big toe seemed particularly weird. I looked at it. And yes, it seemed to be pushing into the second toe. I felt it with my fingers. Somehow, the bones of the toe had migrated to the right edge of the flesh, so that they were pushing right against the second toe. And the top bone seemed more acutely angled than the bottom bone.

Okay, I know, they really are the most hideous toes in the world. But before Friday morning, Miss Right Big Toe wasn't shoved into her companion's personal space.

Okay, I know, they really are the most hideous toes in the world. But before Friday morning, Miss Right Big Toe wasn’t shoved into her companion’s personal space.

It is now Sunday. It’s been a pretty nice weekend. We just had dinner with our friends Leo and Elise, which made me happy. I saw my beloved Julie for our  weekly high holy Sunday breakfast at which all important matters are dissected. The weather’s been good. Brian made beautiful salmon, and put flowers he grew in a little vase. I talked with my Mom. Life is good. Normal. Ish.

But I don’t even have words for how freakish it feels to go to bed with your bones one way and wake with them another way. To have your body changed for the rest of your life while you sleep (oh, and it will be—I’ve had changes in other bones, but not in a single night. I never even heard of such a thing—have you? Has anyone?). It’s going to be a little harder to walk now. A little harder to do the crafts I love. Not too much harder, but a little. I feel stunned by the unreality of my new reality. By my miracle-in-reverse.

And, I wonder. It’s getting close to midnight. If I go to sleep now, what am I going to wake up to tomorrow?

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135Journals Blog Health Corner: What It Feels Like When You Feel Like Crap

11 Jun
Welcome to my Microbiome (altered art journal pages by Alexandra Hanson-Harding )

Welcome to my Microbiome (altered art journal pages by Alexandra Hanson-Harding )

Did you ever wonder what it was like to feel like crap? Probably not. If you’re like most people, i.e., everyone, you’ve probably felt like crap. And if you aren’t feeling like crap, you probably don’t want to remember it. But have I not seen eight million motivational infographics on the importance of living in the moment? Well, friends, if one if going to live in the moment, one is not always going to be doing meditation by the ocean and feeling full of vibrant life energy. Sometimes the moment is being in a sucky meeting where some halfwit is publicly berating you for a typo on a meaningless report. Sometimes the moment is yes, that is YOUR screaming brat on the overstuffed airplane. Sometimes the moment is when you’re desperately searching around on the laptop for an amusing viral video to watch with one hand while you’re holding your syringe filled with methotrexate in the other, getting the nerve up to jam it into your leg. Sometimes the moment is that moment when you actually do jam it into your leg and it actually hurts and you say “OW!” and think DAMN it, and feel mad at yourself because why are you being such a goddamned wimp. It shouldn’t hurt that much. It only hurts that much if I hurt in too many other ways. Right now, some of the vertebrae in my neck are sore and swollen, and my feet hurt, and my tongue is sore, strangely enough, and I’m very tired, and when that many things confuse my senses, I have less resilience against small irritations like a tiny needle.

Today I am feeling like crap because I had two main things I wanted to do: go to a new acupuncturist and go to visit a friend who is very charming and smart and who has terminal cancer. That, and of course, having an inflammatory autoimmune disease. But I digress. This morning I woke up at 4:00 a.m. feeling very sick to my stomach. After 8:30, I fell asleep for an hour in my kitchen reading nook, but had were strange, disturbed dreams. I also had a sore throat and shivers, as I often do these days. And I was still sick to my stomach. I have been lying in my nook looking at the windows that I have decorated with hundreds of strands of woven yarn (compulsive art project), looking at the green trees beyond, and up at the hemlock tree that I can see through the skylight. I see a brass bell I bought at a castle in Germany. I see a vase full of small glass beads that I want to string, and a glass of water that looks too tiring to drink. I see the phone. I want to call my friend but it  feels too tiring to talk to anyone. I would only whine anyway. It took me hours to tell the acupuncturist I couldn’t come. He was nice. He said, “Try drinking coke. If you still feel sick later, you could try chewing Juicy Fruit gum and swallowing it. It’s very binding.” I laughed. “That’s the best Alternative Medical advice I ever heard,” I said. “I’m definitely trying that.” Said it sounded better than a kale smoothie. “You DEFINITELY do not need a kale smoothie right now.”

I feel guilty for not seeing the acupuncturist and my friend. But I don’t want to spread my germs. And I can’t imagine summoning the energy to get into a car and driving it. I’m sweating and shivering. My stomach is a knot of pain. My eyes are half-closed and gravity feels as if it’s crushing me onto the cushion. My neck is throbbing. All around me, grown-ups are doing useful things. I’m just living in the moment. The crappy, but real, moment.

Writing Prompt: Do you ever have times when you feel like crap? Go ahead. WHINE.