Archive for January, 2014

January 1, 2014

Wow. It’s been so long since I posted anything, I hardly recognize this WordPress template. Anyway, happy new year, 2014! I’m thrilled to report that I don’t have anything dramatic to report. Since my last post in 2012, I have continued to get stronger in all ways. I need fewer naps. I can work out for longer periods of time. I feel physically stronger and have a better sense of balance with activities like yoga and stand-up paddling. I can take long hikes over rough terrain. I can have a long travel day, navigating through multiple layovers, and still have a full work day the next day.

Where does that leave me? Most of all, it leaves me feeling thankful and appreciative. Recently Chris and I went to Costa Rica with friends to celebrate Chris’s 50th. Two years ago, when our friends offered the trip, I politely declined, because I knew I wasn’t strong enough and it would feel exhausting rather than relaxing. This year, the time was right and we had a ball. Highlights included a break-of-dawn excursion to watch sea turtles hatch and make their way to the water and a 3-hour tandem sea kayak to Pink Island. Until fairly recently, I would have said no to both activities. I couldn’t possibly get up at 4am and spend a couple of hours on the beach; too tiring. And a kayak trip out to a destination I couldn’t even see from the shore? Forget about it!

Two things have changed: I’m stronger, so I can actually do those things. And I know how to spend my energy so I can recharge. I guess three things have changed. These days, I don’t get as upset about getting tired. It’s part of the deal, and even though it has gotten better, it still happens. I get wiped out. And then I rest. And then I’m fine and happy because of whatever awesome activity I did that made me tired. I’ve read plenty of other people’s accounts of this fatigue and they’re all right on. It’s helpful to know I’m not the only one. And to know it’s very manageable.

A surprising thing happened here at the end of December. Two people came to this blog looking for support for their own health issues. One woman’s husband was recently diagnosed with Balo’s and another woman was recently diagnosed with MS. Anyone who is in the middle of a diagnosis–either their own or a loved one’s–knows how important it is to connect with anyone else who might have some similar experience. I remember being so desperate to find any sort of information. Then, when I found a lot of discouraging data, I learned to focus on the good stories, not just the bad. When I learned about these two people reading my blog, I realized it’s worthwhile to keep updating. Chris and I were eager to share every development when things were going south. Once I started getting stronger, I felt like I had less to tell. Knowing that people do still stumble upon these posts, I want to offer my support. I’m happy to share any part of my experience, especially if it gives someone new ideas about treatment or lifestyle changes that might help in their recovery. And I know it’s very healing to keep focusing on positive outcomes, rather than collect all the anecdotes about how things might go wrong. Leave me a message if you want to connect further, or share this link if you know of someone who could use it.

All scans as of Oct 31, 2013I guess it’s telling that I left the bit about my latest scan until the end of this post. Chris made a compilation photo so you can see how the lesion has changed since this journey started in November 2010. At my last visit in October 2013, Dr. Corboy said the lesion continues to shrink, albeit very slightly. Unless I have some new attack, I won’t see him again for two years. Every year that passes without new activity reinforces the assumption that I won’t have another attack. Balo’s continues to be an elusive diagnosis. I know of two other people who have Balo’s and have multiple lesions, while I have only one, so really, the docs are still gathering data to define what it is. I’m happy to add my story to the picture. As far as my brain is concerned, it’s one lesion, one nasty attack, and then a gradual, continued recovery. Although I don’t take any medicine, I continue to attribute my good health to my diet (focus on anti-inflammatory foods), exercise (staying active), rest, and low-stress lifestyle. As I’ve said before, it’s a good prescription for anyone; it’s just that the stakes are higher for me, so I really follow it!



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