Weaving my way around Rheumatoid Arthritis.

3 Years…

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I wrote this post May 23, 2013, but never published it. I  publish it now and start blogging again tomorrow. Things have changed drastically in the past 10 weeks, and I find myself, once again, needing a place and discipline to record what is happening. Until tomorrow, I leave you with my three-year summary.

Three years now… I’m going to edit my post from last year, and see what’s changed…

Two  Three years… since the RA diagnosis.

Two Three years, and I am better. Not healed, not free of RA, but so much better.

A year ago, there was lava flowing in my arms, all day most days. Today, only occasionally do I feel a faint twinge of fire thereThe fire is gone, an ancient memory. Hooray!

My knees still ache some days – most days, usually when there’s a storm brewing or I’ve spent too much time in the garden, or hiking. But the bright red orbs look normal now, and are cool to the touch.

My wrists are still swollen, but less so than a year ago, the snuff-box only occasionally tender. My left pinky is often achy, my right pointer finger almost always tender, and sometimes my thumbs join the conversation. My hands are still stiff in the morning, most mornings, some mornings, but less stiff than a year ago, and the strength and flexibility returns more quickly.

I can’t open jars the way I used to, can’t pick up my cast iron skillet with one hand. There are differences, but still improvements from a year ago, two years ago, three years ago.

I’ve lost 25 15 pounds  – prednisone last september was evil, I still haven’t lost the 10 prednisone pounds. I no longer look like a sock monkey, with sausage tubes for arms and legs. There is still edema, noticeable in some places, less in others. Overall, I can see bones and veins and skin texture and muscles. I still have many pounds to lose.

I still gain 3-5 pounds, overnight, if I get zapped by gluten cross contamination. I still dream of eating cake when I’ve been exposed. I still get diarrhea and DH blisters, red eyes and sleepy bugs and crusty, stuffy nasal passages and occasional nose bleeds.

The lymph nodes under my arm are normal now – not hot and swollen and sore to the touch. Occasionally there’s a hot spot, but a quick self-lymph massage takes care of it. It’s been over 2 months since I felt any tenderness there.

The DH on my hands was totally cleared, for the first time since I was 16. It stayed clear for almost 2 months, and then I got zapped by some gluten surprise, and broke out in blisters once more. I am on the mend; it is a slow process as the skin recovers from 48 years of damage. A year later, and I am still trying to heal my hands. The prednisone I took in August 2012 was miraculous… I got rapid improvement, and now just try to maintain. Usually, I have one or two or three knuckles with splits and cracks, and blisters when I get zapped. I’ve taken low doses of prednisone once in 2013, and am managing to not get worse – just not get better.

The balls of my feet are still swollen, sometimes, again this seems related to the weather, gluten zaps and overuse. less than a year ago, but swollen every dayMy heels are sore occasionally, and that is new this year. All my toes are less swollen; the redness has gone. Only the baby toe on my left foot sometimes has an ache maintains its constant ache, yet that ache is also less. Sometimes, especially with the weather changes, my big toes like to talk, but softly, and less frequently than a year ago.

My arches ached for a month after my 2012 hike, which was new, but they have quieted down now.

My back still responds to the weather fronts, and if I spend too much time on my feet, but a 15 minute time out usually will buy me another hour; and most days I am able to function all day. My back is the first place to tire when I work too much in the garden, hike too much, stand too long.

The stand up desk has been a blessing. I no longer get stiff from sitting, as I stand most of the day. When my knees start complaining, I can easily sit. Of course, having the desk makes it difficult to judge if/how much my joints have changed.

I know that some of this improvement is due to changes, big and small, that I have made.Yet, some healing is taking place, for I can punch the elevator buttons now. I can carry my briefcase instead of roll it. I still don’t walk on pavement if I can avoid it. I save my feet for more fun things! For instance,  my finger no longer hurts when I jab the elevator button… because I now use the side of my hand or my car key, or coffee mug or elbow or whatever is handy, but never my pointer finger.

In general, if something hurts, I stop doing it, find a different way to do it, get someone else to do it, find a tool to do it. I try to be as gentle to my achy parts as I can be.

The RA still flares with the weather, a constant roller coaster parallel to the fronts moving in and out. It’s not the wet or the cold or the heat, it’s the shift; actually the hours before the shift. A change from 80 to 50 is bad, but so is a change from 50 to 80. A change from dry to wet is bad, but so is a change from wet to dry. It’s the “betweens” that are good. My joints like consistency, they don’t much care if it’s cold or hot or dry or wet, they just don’t like the approaching change. They are like many of us in that way. The most difficult part of change is the anticipation. Once the change occurs, whatever it is, we are able to steady ourselves and get on with life.

So, 2013 finds small improvements. Not as much or as many as I would like, but improvements still. I can garden more often and longer, I can hike and backpack, I can sit in the sun all morning at the Farmer’s Market and spend the afternoon and evening doing something fun instead of sleeping the rest of the day.

I pace myself better, I do what I can, and then I rest. I still have days I’m “done” at 4 and in bed at 6, yet I have more days when I can go from 5 until bedtime at 10, with only a short nap in between.

I’m more careful with my food. I never eat in restaurants because they just aren’t able to provide a truly gluten free meal. I use home test kits now, before I try new foods. No more “bio testing” on myself. 

I’m wearing a pedometer and regularly get my 6000 steps. Over the holiday weekend, I averaged 12000 steps a day – and slept well!

I’ve gone three months without a lymph massage, and my body seems able to maintain.

My heart started acting up again in December, lots of Premature Ventricular Beats (PVCs). The last time it did this was in 2008. This time was worse, more often and for longer time spans. They don’t know why it does this, but all the tests come back normal. On the scan they can see the beats I’m feeling, but don’t know why they happen. The stress tests and echocardiogram show nothing abnormal – so I just live with it. I’ve come to think of it as an alien living inside my body. Cute little guy’s heart beats different from mine, but I know he’s ok, so I don’t pay him much mind. Just go about my business and share my body with the alien heart beat!

Progress is slow, but continuous. I have great hopes.


Written by wovensongs

May 23, 2013 at 7:20 am

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