Weaving my way around Rheumatoid Arthritis.

A new chapter

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Sunday September 23, 2012

I’ve lost over a week, as far as recording my detailed symptoms – but I’ve traced back and done a synopsis below.

Gluten does that – besides the physical symptoms, I get despondent, grumpy, withdrawn, angry, tired and it takes all my energy just to get to work & keep up the minimal amount of home stuff.

The past two weeks have been hard. DD1 and DXH were in Portland visiting DD2 for a week, which meant more responsibilities for me. DD1 had a nasty cold for a week before they left, which also meant more responsibilities for me.  DS came down with the same cold, only his turned into an ear infection and pneumonia by Monday, which meant even more responsibility on my shoulders. He’s usually my rock.

The cat was spayed, and pulled her stitches out, which meant another trip to the vet for staples, antibiotics twice a day, a collar to keep her from licking herself, which means hand feeding her, since she hasn’t figure out how to eat with the collar, and keeping her inside and supervised.

All the other critters are doing fine. The chickens are not only giving me 4 eggs a day now, but proving to be some of the best therapy around. They are funny and love everybody (people = food). They come running when they see you. Twelve chickens clucking and flapping their wings and running full tilt across the yard – my own comic skit every time I walk out the door. They follow me everywhere. I have to scatter a hand full of sunflower seeds in the yard to distract them so I can go for a walk, or get in the car!

Yesterday, after setting up my booth at the farmer’s market, I was standing and talking with a friend, holding my coffee cup in my right hand, sipping my coffee, my left hand at my side, when the trembling began. My left hand/arm did its little dance for a few minutes. I finally put my hand in my pocket to disguise the trembling. Then my right hand decided to join the party – and now I know a new way to add froth to my morning cup-pa!

This is the first time that I’ve experienced the trembling when standing. It used to only happen when I was lying down – relaxing, reading a book, watching TV. The past few weeks, it has happened a few times while I was sitting. And now while standing. Not a good thing.

Mid morning, my friend, PT2 came along. We chatted about my art work, which she had never seen, and then she asked me how I was. (I haven’t seen her in several weeks – just too busy, and she left the practice where she was insurance billable, and opened a private practice, where she is not insurance billable.)

Now, normally, I don’t tell people how I am. For the most part, I keep a stiff upper lip and a positive attitude, and don’t share. But I’ve seen PT2 since right after the RA dx, weekly for almost a year, and then less often this past year. She knows all my symptoms. So, I told her what had just happened with the trembling, and then I burst into tears. Not my style at all.

She was an angel, and just the right person to talk to. I’ve been coasting the last few weeks, knowing that I needed to come up with a new plan, but not really making any decisions. Reading and thinking and worrying, but not really changing anything. So, now it’s three am, I spent the rest of Saturday going for a long walk and then doing research, slept for a couple of hours, and typed this review and now I’m off to sleep and will wake tomorrow with a plan.

On to the next chapter in this saga.


Saturday, Sept 22: woke with new blisters on fingers – took a prednisone. I just can’t face having my hands get worse again. The dermatologist said she’d like to see me get to the point where I used the prednisone and cortisone only for flares, but once a month or less – now it looks like once a week. I see her again in 6 weeks, when we will re-evaluate, based on how I’ve done. I had tapered off the cortisone this week, and was only using the moisturizer, until yesterday. Sigh.

Friday, Sept 21: just another day at work. “D” today – and I don’t even know what I ate yesterday.

Thursday, Sept 20: Finally saw the chrio on Thursday evening. She did gentle adjustments, tens, and light massage. That seemed to help, and my arm is some better, still not right, but better. Today was DD2s birthday. She is on the west coast, and I miss her, immensely. DD2 and DSIL left for a long weekend – wedding to attend.

Wednesday Sept 19: Woke with  inflamed tendons in my right wrist and inflamed tendons and tender lymph nodes from my wrist to my axillary on my left arm. Iced and did lymph massage and babied that hand & arm. Had all day meetings on Wednesday & Thursday, lots of time at the computer, and “dinner” out with the work crew on Wednesday night. I didn’t eat, just had sparkling water. I enjoyed getting to know the folks from out-of-town, but it meant I missed my Wed night with my gal friends, and I needed them this week. It was, however, the first time I’ve gone “out to eat” with folks and felt OK about not eating. Since I can’t smell the food, and the company was fun and funny, and I ate before I left, so I wasn’t hungry, it actually was a fun evening.

Tuesday Sept 18: I had a big fight with DD1 and another with DXH, and I don’t usually fight with anyone. Bad case of the gluten grumps.

Monday Sept 17: Blisters & one new crack. DD1 and DS both had “D” yesterday, and woke with new hives. So, we traced it to the beef, which I had bought at a different store. Drat. I HATE GLUTEN.

Sunday Sept 16: “D”

Saturday Sept 17: Family dinner. First one in a week. Between people being sick and busy work and travel schedules, we’ve been eating catch as catch can – with lots of chicken soup and eggs and left overs.

Friday Sept 14:

weight 172.3 – down 1.2.

Saw dermatologist for follow-up. She gave me a new scripts for a moisturizer and a protector, wants me to taper off the cortisone, unless I flare again. Hands are looking good, still some spots on fingers, but better than yesterday. She said it takes a month after my hands look healed for them to be completely healed at the cellular level, and they don’t look healed yet.

Joints all about the same, edema the same. Had acupuncture again yesterday, hoping that will help the edema.

Thursday Sept 13:

weight up again 173.5 – haven’t seen that number in over a year – so the prednisone is my enemy now.

hands are better no new blisters, so healing again

joints about the same, edema worse. Lymph gland under left arm swollen and tender, ball of left foot, left little toe, left knee, left arm all sore, even my jaw and my face are swollen on the left side. Sigh. Right shoulder girdle sore – too much time on the computer the last week.

Lots of freezing again when I wake up the past few days & some more trembling, now it happens when I’m sitting as well as when I’m laying down. It had gotten better, now worse. Sense of smell is about the same, a little better some days, then worse others. I hate this nerve involvement. It’s scarier than the RA, and that’s scary enough.

Seeing the acupuncturist today, and the lymph therapist on Saturday. Maybe we can slow this train wreck.

Wednesday Sept 12:

Hands are improving, no prednisone today, no new blisters, everything a little better.

Tuesday Sept 11:

Lost Tuesday when Safari crashed. Have to remember to save the drafts!

Hands are about the same as Monday – blisters on fingers are drying up, knuckles have some cracks and are dry, backs of hands are still healing – no new blisters, except between finger and thumb of left hand, color is back to normal, skin is soft and smooth, so I’m just dealing with the fingers, which is an immense improvement. Took one prednisone (10 mg) and using the ointment.

Joints are behaving – guess my body is busy attaching my hands instead of my joints.

Edema is about the same. Weight up to 172.3c

No idea what I ate on Monday.

Monday Sept 10, am:

Hand report:

D*** D*** D*** D*** – woke with dozens of new blisters scattered over 7 fingers, one new crack. backs of hands are fine so far. Fingers are itchy. So, I’m very suspicious of the peanut butter cup I ate Saturday. They are supposed to be gluten-free, but I’ve over indulged in them the last few months, and my hands have been really bad, so maybe that’s the culprit. They don’t fit in the FODMAP diet, anyway, so that’s one more potential problem I don’t have to figure out.

Still healing: less red, less swollen, less leathery, less puffy, some dryness on knuckles, new deep blisters, new tiny blisters, one new crack, new itchiness.

All Healed: , no peeling skin. Still using the cortisone ointment 1 x a day. Took 10 mg of prednisone this am to see if it’s enough to knock this back fast.

Joints – maybe a 1.5 in feet and hands this am. A little less stiff than normal, but not stumbling around stiff. Neck a little crinkly, lower back and shoulder a bit stiff this am.

Edema: no noticeable change.

Weight: 172.2

Sunday I ate: 2 eggs, butter, pork chop (paprika, salt) bacon, 1/4 cup applesauce (sugar, cinnamon),basil, tomatoes, chicken broth (scallion tops, carrots, tomatoes, celery), 1/2 c coffee & sugar (no cream)

1pm – tummy bloated, lots of burps and feeling sleepy – so is this the corn I ate yesterday that is finally hitting my large intestine & causing the bloat? or is this the food I just ate? Or is this the peanut butter cup I ate on Saturday?

3:00 pop corn with butter & nutritional yeast & salt & now my tummy feels fine. Hmmmmm, Applesauce (sugar, cinnamon), another 1/2 cup coffee, sugar, cream and that’s all


Written by wovensongs

September 23, 2012 at 2:57 am

One Response

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  1. First of all, thank you for your lovely comment today on my blog. JUST what I needed!! Plus, it reminded me to come on over here and get caught up on what’s going on in YOUR life! This summer has been an odd mix of bad health, summer activities and complete overload for my lupus brain. I have not been on the computer much mainly because I can barely get through my day. Fall and winter slow me way down and I am just now starting to get caught up.
    I have to tell you that just envisioning your yard and chickens brings laughter to me. It’s those silly small things in life that bring the raw, true joy. Thank you for sharing!
    I’m sorry to hear about the tremors. I’ve got my share of neurological issues and I know how frightening that stuff can be. SO glad you had a good friend near. Chickens and a good friend…I guess if you’ve got that, well, your doing pretty good. 🙂

    I wish for less weariness and more peace to your days. Know you are in my thoughts,



    September 27, 2012 at 6:27 pm

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