heartsongs

Weaving my way around Rheumatoid Arthritis.

Back on track

with 3 comments

Vacations always throw my schedule off. Even a long weekend, with the planning and packing and then the unpacking and catching up at home and at work. The things that suffer are my logs, my journal, and my exercise routine and other self-care. It always takes a few days to get back into my schedule. September was one long weekend after another. I loved every minute of it.

Yet, now I find myself with few entries in my journal, riding along on a mini-roller coaster flare, with no data to even try to see if I can figure it out. I’m a business analyst by trade, so data and analysis come naturally. With no data, there’s no analysis, with no data, there’s no way to determine cause and effect. Without cause and effect, there’s no way to see if I can change the RA roller coaster ride. I need to find the brakes, understand the maintenance manual, make this my ride, on my terms.

I thought this flare was weather related, which was scary in and of itself. My worst ever flare, the flare where RA went from my new baseline good, to twice as bad as it had been at its worst, happened last fall. So I’ve dreaded fall, scared about what it might bring. This flare has been swooping, in its gentle way, for over a week now. Today, when the weather is stable, it dipped again. Still only 2s and 3s for swelling & aches & pains, but a cause for concern. If I can’t blame it on the weather, then what? Where’s the pattern. I need the data, and I don’t have it, because I haven’t been able to figure out a way to keep up with the data and have a fun vacation time, too. Both are so important.

The effects of RA are loud and clear, the one’s I experience first hand, and the ones that I read about. If there is any way I can use the data of my life to figure out the cause, that’s where I want to focuse my energy. And in the mean time, I need to focus on self-care, to treat the symptoms.

There are several things that have been slowly slipping out of my life this month.

First, there are things I do that help keep my body happier, that treat the symptoms of RA, and hopefully, slow the degenerative progression of the disease – acupuncture, lymph massage, physical therapy, exercise, and sunshine and sauna and stretching. I have done less and less of these things the past few weeks. So, I wonder if that is a part of why the RA is flaring, again.

Dairy has slipped back into my diet, is that a part of the puzzle?

Then, there’s the logging and journaling and reading and blogging and research. All important for different reasons. All have slipped into oblivion the past month. My logs and journals help me determine patterns, possible cause and effect. Give me hope and allow me to know how today is compared to yesterday, or a year ago. Reading and blogging within the RA community provides support, new ideas, and a way to connect with other’s who understand this crazy ride. Research gives me lots of new ideas, ways to treat the symptoms, and ways to maybe get to the cause of the symptoms. And I believe there is a cause – or more than one – the medical community just hasn’t found it, YET.

I’m lucky, so far. RA is being gentle with me. My symptoms are mild. They have gone into complete remission for days or weeks several times the past year. I know at least two true triggers – gluten and the weather. One of those I can control, most of the time.

Now I just will have to get back on track and then redesign my life in a way that I can take my exercise and logs and self-care on vacation with me!

 

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Written by wovensongs

October 6, 2011 at 8:05 am

3 Responses

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  1. If you are lucky enough to ever come up with the solution, please do share! I do find somethings that I can for sure say impact my ra but even those tend to come and go with no regularity. Some swear that diet can trigger a flare…certain foods. Others swear that stress will do them in and last some claim that overdoing will bring on their flare. It is as clear as mud…lol. But don’t you EVER give up. We are each different and each one of use have different triggers. You WILL unravel this mystery as you are a great detective. You have the skill set and that is for sure!

    deb aka murphthesurf

    October 7, 2011 at 9:51 am

    • Hi Deb,

      Thanks for your reply. I find I’m a little weepy today, and your pep talk is good for me!

      I can’t give up, I have two adult kids who also have Celiac disease and RA symptoms. We’re in the process of getting insurance in place for them, before we go for a diagnosis, but from what I know, and what they describe and experience, we’re pretty sure what were looking at.

      So, I will soldier on, experimenting on myself, and believing that I can figure out what is happening to the three of us.

      wovensongs

      October 7, 2011 at 10:17 am

      • Wow! So sorry to hear about the kids. My son has sjrogens and my daughter PCOS and I think also is getting sjrogens also. I think with Celiac that a glueten free diet is essential but don’t quote me on this. And if your children have this problem, I would try glueten free for yourself as well. You may also want to eliminate soy from your diets if after trying the glueten free you still have some issues. Some people are very sensitive to soy as well. My daughter found glueten free to help with her PCOS but she also does dairy free and soy free as well. We also don’t eat any red meats either. (((HUGS))) Hang in there and try to stay strong. Trust me, I know how difficult all of this can get at times.

        deb aka murphthesurf

        October 7, 2011 at 9:05 pm


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