Weaving my way around Rheumatoid Arthritis.

The New Normal

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As close to normal as it gets.

Time to celebrate an almost normal week. I managed to stay safe from gluten; my edema was at an overall 1-2 all week (still have trouble spots that are at a 3-4), stiffness also at a 1-2 all week. Little stiffness in my left ring finger this morning when I started to type – that’s new for that finger. I have gardened every morning, but been careful to not overdo. It’s been a good week for RA.

I had a weird flare yesterday afternoon, hit me like a ton of bricks about 5:00 while I was out shopping – fatigue and stiffness and joint pain. I hobbled two blocks to my car, carefully drove home, watched TV while DS cooked dinner,  went to bed by 9. And then we had a whopper of a thunderstorm during the night and I was back to normal this morning. That’s the most clear and dramatic example I’ve had of the weather affecting the RA. In the past, I’ve suspected it was a factor, but have always had confounding variables. This time, I have had an near perfect week, from an RA point of view. The storm moved in quickly, as did my symptoms, and both disappeared just as quickly. I don’t like it because I can’t control it, but it’s good to have such a clear picture of another variable.

Edema Report

PT1 did her normal magic on the edema, my right ear canal is less swollen today, and my hearing continues to improve. Who knew you could have edema in your ears.  I’m impatient and wish she could rub all the edema away in one fell swoop – only it doesn’t work that way. My left axillary is less swollen than a week ago, but more today then when I saw her on Wednesday. She works her magic, I get better, then worse, but each time the worse is not quite as bad and the better is a little more so than the week before.

I’ve been getting weekly lymph-massages for almost a year now, and am continually amazed at the changes. I have lost 20 pounds of edema. With no changes in my diet or exercise, and the scale shows it all as water loss, too. I have gone from being shaped like a sock monkey, to being able to see my bones, tendons, veins – even some muscles!!!

I’ve lost 3 inches around each upper arm, 3 around my bust, 4 around my waist and hips and 3 around each thigh. My skin has changed texture, from being tight and shiny to being soft and a bit wrinkly. Never thought I would be so excited to see wrinkles!

I still have a way to go to get rid of all the edema. It’s impossible to tell how much is still edema, and how much is fat. There are definite areas that are edema. My goal for the next 12 months is to also work on the fat part of this equation. So, I’m beginning to put together an exercise plan. Want to have it all in place when I return from vacation the end of June.

Joint Report

I’ve been using a makeshift stand-up desk at work. It’s easier on my joints, I don’t get as stiff when I work standing up. At home, I keep my computer at the kitchen counter and alternate perching and standing. So, last week I started the process of requesting a sit-to-stand electric desk at work. A prescription is required by my employer, so I saw my Rheumatologist on Tuesday. I had not seen her since September; we had a lot of catching up to do. I described my four short (1-3 day) flares and my three-month roller coaster, asked her a lot of questions, and then she examined all my joints for tenderness and range of motion. We discussed getting base line x-rays. Up to this point, the only imaging done was an MRI on my left wrist a year ago, which showed some damage matching the DeQuervain’s and early RA diagnosis. As much as I didn’t want to expose myself to x-rays, I agreed that it would be good to have some baseline images, so if the RA does progress, we have something to compare it to. Also, knew that she would be more likely to support my alternative path if she could see inside and assess any damage.

They took hand/wrist, feet/ankle and hip/lower vertebrae. The results were about what I expected – no bone erosion, a little osteopenia in hands, and some degenerative disease in the sacroiliac and L5 S1 intersection. She was very pleased, and said to keep doing all the anti-inflammatory life style things I’m doing, to come back if I had questions or needed her, and otherwise to come back in 12 months.  It’s nice that she trusts me to know when/if I need her. She also knows that I see my PCP every 4 months. My PCP is very interested in the research I’ve done; supportive of the experimentation I’m doing, and applauds the progress I’m making. She orders whatever blood tests I request, goes along with me when I want to lower my thyroid meds, or take massive doses of vitamins, or whatever, and does the tests I need to map my progress, or lack there off. She also promised to rein me in, if she thinks I’m going down a dangerous path. She’s a great part of my team!


Written by wovensongs

June 5, 2011 at 8:13 pm

Posted in Edema, Joints

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