Archive for February, 2015

Annual update: 2015

Visiting friends and family in Seattle

Visiting friends and family in Seattle

Yikes! I’m long overdue for my annual blog update. I debated writing anything, wondering if it’s worthwhile, but recently heard from a Balo’s group in Germany who inquired how I was doing.

I’m happy to say we’re long past the crisis mode we were in when Chris first created this blog. Four years later, we’re well into “happily ever after.”

I’m back to my normal activities, for the most part, even with the persistent hole in my brain. The main thing I notice is that when my body gets tired, the left side goes first. When I’m really worn out, I have less dexterity in my hand and foot, my tongue gets heavy, I’m more likely to cry and I just want to lie down and rest. So I do rest. And then I feel better! (Some days I wait too long for the rest, but I swear I’m improving.)

What helps? The usual: managing stress, keeping a reasonable schedule at work, exercising regularly, eating an anti-inflammatory diet, and getting plenty of sleep.

Just before a challenging hike in the aspens this autumn

Just before a challenging hike in the aspens this autumn

What’s new? I continue to increase my activity level. This summer I dedicated more time getting back to tennis with my coach and got a new baseball and glove so I could play catch with Chris. In a winter ski conditioning class, I even managed to jump over a small hurdle on my left foot. That was a giant victory! Also, I’m spending more time in yoga and meditation, which helps me stay tuned in to my body’s needs.

In a recent wellness exam, my general practice doctor recommended I increase my vitamin B dose for the winter, so I’m taking 2000 IU’s daily, along with a women’s multivitamin, fish oil and an anti-inflammatory supplement (Zyflamend). I continue to read everything I find about maintaining good health, and most seem to support the plan I’m on.

What’s next? I’ll see my neurologist, Dr. Corboy, in November this year. My last appointment was in November 2013. I always hope for the scans to show the lesion is shrinking, but at this point, I don’t expect much change. It feels like things have stabilized in a predictable range of good days and bad days.

About that Balo’s group in Germany…

After last year’s post, a woman contacted me to say she and a few others found my blog very interesting, as they all have the same diagnosis! I was so gratified to exchange notes with other people. They’re all involved in a study at the NCRC (NeuroCure Clinical Research Center) in Berlin, where doctors are investigating Clinically Isolated Syndrome (CIS). You can learn more about the study here. A year ago there were five people in the group; now they’re up to eight. It makes me wonder why there are so many cases in one place: better radiologist skills for identifying this in scans, or something in the area or genetics that causes Balo’s or something else? I’ll leave it to the specialists to answer that question.

As always, feel free to contact me directly with any questions.

Until next year. – jen


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