Weaving my way around Rheumatoid Arthritis.

A New Roller Coaster

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It’s been a long time since I wrote or tracked anything in my spreadsheets or wrote in my journal. A long time since I wrote in this blog. I’ve thought about this a lot recently. Writing about this journey helps me keep it in perspective. It gives me insight. So, I think it is an important and maybe even necessary part of my treatment plan.

I got a chance to talk to a friend on Saturday who I hadn’t seen in a while. She had cancer at age 15 and had her leg amputated. She was not expected to live more than 6 months. 53 years later she is healthy, strong, radiant. She spoke of how important she believes exercise is to her health; she swims every day, 6 days a week and considers it  her “medicine”.

I think my journal is like that, a part of what I need to do to get well. So, I begin, again.

I have had two great months, health wise. Little cross contamination from gluten, few RA symptoms. Few storms (how I wish for some rain). I’ve been able to garden, hike, swim, walk, and do normal daily activities as long as I was vigilant about how much I was doing.

Habitat Roller Coaster

This week, I got a bit ahead of myself; sigh.

A week ago I got cross-contaminated from a new brand of corn chips clearly labeled “gluten-free”. My son reacted, too, and there were no other suspect foods, so we are pretty sure that was the culprit. I’ve decided to order the gluten test strips. At $15 a pop, I won’t be testing much, but I’ve decided no new foods will enter my mouth without being tested first.

The balls of my feet have been a little swollen all week, but I wasn’t really concerned about that. I had gone back to the gym and was doing a little running (walk 3 laps, run 1 – for a mile) and swimming, and was wearing a step meter and increasing the number of steps I walked each day. Woo – I was up to 6000, from 2000! A regular athlete.

Then the supreme stupidity occurred. After feeling so good for the past 2 months, hiking some, gardening some, even doing a little housework some days. On Friday morning I though (or didn’t think) I could do a 3.5 hour Habitat day with my team from work. It took place on our asphalt parking lot, so 3.5 hours of standing on asphalt, as I moved lumber, ran a saw, hammered nails, helped lift walls. It was fun. I paced myself, it was hot, but not so hot that I even broke a sweat, I stayed hydrated. But, it was too much – way too much. The rest of Friday I pottered around, desk work, reading, relaxing. I didn’t work hard enough to get a blister, or to have sore muscles, or to even feel tired – but I worked too hard for someone with RA, too hard for ME with RA.

Saturday morning, wham bam, I woke in a nice little RA flare. All my joints were at a 4 or 5, edema was back at a 4 or 5, couldn’t make a fist, balls of feet hurt, every joint was stiff and sore. Lava was flowing under my skin from the tips of my fingers to my armpits. Hobbled to the bathroom, hot shower, then a day of alternate slow-moving and resting, stretching, doing my PT exercises, doing gentle self massage, gentle yoga, resting in the sunshine, texting with friends – all the little things that seem to help, if not my body, then my spirit. If I rest too long I get stiffer, if I move too much I hurt more, it’s a difficult balancing act.

So, another lesson learned – please, please let me remember this one. RA isn’t gone, even when I have two months with near zero symptoms, it is just hiding, waiting for me to do something stupid, and then it’s back in full force. For me, staying truly gluten-free seems the most important factor, followed by avoiding overwork of any kind. Getting zapped by gluten and then doing too much physically is a sure path to disaster.

This morning, all my symptoms are improving. Maybe at a 3-4 overall pain, stiffness, swelling, my hands are weak, knees are burning, neck is sore, back is sore – well really, everybody is sore, just some are shouting louder than others. I wonder how long and low the dips will be on this particular roller coaster ride.


Written by wovensongs

August 21, 2011 at 8:23 pm

Posted in Edema, Joints, Gluten

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