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The big news for this year is one new, small lesion in my frontal lobe, which means I officially have a diagnosis of MS. Prior to this, with the one Balo’s lesion, the doctors didn’t classify my condition as MS, since the M stands for multiple and I had only one giant, crazy, concentric-ringed lesion. That one is still there, about the same size it was when we last looked around inside my brain in November, 2013 (18×18 mm).

This month’s scan was just a regular 2-year checkup. I had no new symptoms and no new exacerbations from the existing lesion. In fact, the same week of my scan I also made it to the gym four times and was feeling terrific, so I guess it doesn’t have to be some dramatic health crisis that leads to a new diagnosis.

Although I’m disappointed with the new developments, it’s not a complete surprise, and I am happy to still be feeling good and strong. I’ll get another scan in six months to see just how active my brain is. If there are more lesions then (or anything new develops before), we’ll talk about whether it makes sense for me to begin taking medicine. As of today, I have not taken anything at all, though I do manage my diet and take care of myself with lots of exercise and rest. Luckily, I am approaching the age where MS attacks tend to taper off, so I’ve got that going for me. (Who said aging was a bad thing?)

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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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January 1, 2014

Stronger
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.

Thankful
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!

Smarter
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.

Open
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.

Scans
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!

Cheers,
-jen

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Some of the trappings of neurological rehab I’ve collected over the past two years.

Annual scan

Today is the two year anniversary of my first MRI. What an auspicious thing to celebrate. I haven’t posted since last year at this time because things just continue to improve and it feels like my story has become rather boring. Boring in a good way. Yesterday I had another scan and saw Dr. Corboy. I don’t have the official report yet, but the short story is my lesion is slightly smaller and there are no new lesions.

Made for walking

Last week I found a pair of shoes in the back of my closet that I haven’t worn in about two years. They’re slip on’s and the heel is just high enough that I wouldn’t have pulled them out to even try wearing them since I had the big attack in January 2011 and lost my ability to walk. I remembered I bought them in Wisconsin in December 2010 when I was there after my visit to Mayo Clinic in Rochester, Minnesota. I specifically bought shoes on that trip because I was having trouble using the ones I had packed. When I found the shoes last week, it took me awhile to remember why those shoes worked when my other ones didn’t at that time: it was because it was physically difficult for me to tie my shoes. So at that point at the end of 2010, my fingers weren’t working very well but my leg and foot were fine. I had forgotten about the tying and buttoning issues.

Fast forward almost two years. My foot still doesn’t quite do what I want it to, but I don’t think twice about tying my shoes or buttoning my shirts. Not only that, I’m feeling optimistic enough about my recovery in walking that I put those shoes on and started practicing walking in them, using some walking sticks to make sure I didn’t twist my ankle. (Notice that I used walking sticks for this practice; I left my walker, four-bottom cane, regular cane, and two ankle braces in storage!)

Highlights from the last twelve months

In addition to collecting enough physical therapy gear to start my own clinic, here’s what else I’ve been up to since my last post:

  • I started a new job and work 40 hours per week.
  • I’m back to mousing left-handed (my dominant hand) about 60% of the time.
  • I’m back on my road bike, clipped in, and riding for an hour at a time without resting.
  • I ride my bike to the gym for Pilates or some other workout a couple of times a week.
  • I take fewer naps than my husband.
  • In one weekend I did an hour-long road bike ride on Saturday and went stand-up paddling on Sunday. (Nice testament to my endurance and sense of balance!)
  • I’ve been back on the tennis court and can hit and move better than I expected. I’m running out of excuses for my lame forehand.
  • I’m doing gait training at the Boulder Center for Sports Medicine and can do short stints at jogging. I have a goal of running a 5k by next spring.

What I’m still working on:

  • Typing with my left hand – it still gets cramped up and it’s difficult to type fluidly for any long period of time.
  • Shoulder and hip stability – that deep root of my shoulder and hip are still wobbly and unreliable at times.
  • Balance while doing yoga – I recognize what I’m trying to do is tricky for many who don’t have any holes in their brain, but I’m still stubbornly trying to get it right.
  • Walking without a perceptible limp or adaptation, so my left side does effortlessly what my right side does effortlessly.
  • Left side fatigue. Some days the left side of my back is just tired, in a way that my right side never feels.
  • Response to being cold or emotional or tired – these conditions all exacerbate my symptoms. The only remedy is to rest and not fight it.

Other crazy developments:

Today I talked to someone else who has a Balo’s type lesion. It’s like finding a needle in a haystack, considering how rare it is to see Balo’s lesions. It was really great to connect with her. Unlike me, she has 13 other lesions and oligoclonal bands in her spinal tap and was diagnosed with MS immediately. Her Balo’s lesion only showed up recently, and her doc hasn’t seen anything like it before, so she doesn’t have an official diagnosis of Balo’s. My doc saw this woman’s scans and said, “Yes, that’s Balo’s.”

She’s going to share her scans with my doc, so the radiologist can publish a report about the few instances of these scans they have seen. It’ll be good to get more information out there. As I told her, we’re rewriting the story of what Balo’s is, and it has a happy ending. One thing that changes for me is that I thought Balo’s, by definition, was something apart from MS. My official diagnosis is Balo’s, not MS. Adding this woman’s scans to the picture adds to the picture, since she has MS and a Balo’s lesion. Just when I thought things could be predictable… I should have known better. The fact remains that I have only one lesion, no OGC bands and no diagnosis of MS.

My treatment plan

My medicine is healthy food, low stress, exercise and rest. Most days I take a multivitamin, fish oil capsule and Vitamin D capsule. I continue to read about the connections between leaky gut, inflammation and auto-immune diseases, so I’m sticking to my new diet that’s working well for me: not much gluten or dairy, lean meats, lots of fruit and veggies, and very little processed foods. I’m also managing my stress levels and getting plenty of rest. I’m lucky to have a job I love, which allows me to work from home four days a week. I meditate occasionally and do yoga once in awhile. If I have to have a lesion in my brain (which apparently I do) I feel lucky to be on the path I’m on.

Assuming nothing dramatic happens, my next scan and doctor’s visit will be in November 2013. After that, I’ll see the doc (but no scan) in 2014 and have another scan and doc’s visit in 2015. Fingers crossed.

One more thing

I’m thankful for the people in the online communities who share knowledge and support each other. I’m always happy to talk to anyone going through this, especially if you have a Balo’s lesion and are uncertain about what to expect. I want to help spread the word about what this looks like so future patients don’t have to experience so much uncertainty. Thanks to Mandy in Arizona for starting the Tumefactive MS Facebook page and aggressively campaigning to expand the TMS network. There was a time when the docs thought that’s what I had, so I can appreciate the need to share knowledge about it.

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Hello All,

I meant to have this ready for Jen back in November, right after her scan… Finally got a second to create this for her (and you all). As you can see, her lesion continues to shrink. Corboy thought it had shrunk by an additional 10%.

Oddly enough, we just saw him the other day (Jen’s 6 month checkup) – and he gave her another clean bill of health (or at least the equivalent for someone with Balo’s). 🙂

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Celebrating with Chris, Madya and Salvador in Cancun

We got the good news we hoped for from my scan November 1. The lesion continues to shrink and there is no new activity anyplace else in my brain. I mean, sure, there’s plenty of activity, but none of the bad stuff that shows up on an MRI. Some time soon Chris will be posting the latest image for comparison, but for now I can tell you that it’s 10% smaller than it was in May. We’re all very impressed with that!

I’ll see Dr. Corboy again in 6 months and will have another scan a year from now. My treatment plan remains the same — take care of my body with vitamins, healthy diet and exercise, and avoid stress. I believe that’s the formula for longevity for everyone. However, as a friend of mine observed recently, my prescription comes with more responsibility. There’s more at stake when I decide to stray from the path.

The day after my scan we went to Mexico for a few days for a very relaxing vacation. One of the highlights of our trip was meeting our former co-worker, Madya. Not only is she a warm, radiant personality, she happens to share a birthday with Chris. (Coincidence?) Even though we had never met previously, we had a great long-distance relationship and she put a lot of love and care into the universe for me over the past year. What a treat to see her in person and reinforce what I already felt about her.

When we came back I started my new job, which is going very well.  I’ve reconnected with another former co-worker, from a different job, who is so much more than a work-mate. On November 11th  at 11:11 we stepped outside the coffee shop where we were working, faced the foothills and sent out our intentions for good things for the world. Needless to say, she’s helping me with the low-stress part of my recovery.

And now for the holiday season, which is going to be a 180-degree change from our mood and our activities last year. We’ll be with my brother and his kids in Washington for Thanksgiving, and with Chris’s mom and sister and family in Wyoming for Christmas. I feel lucky that I have the chance to do those things that seemed so elusive last year at this time.

Once again, it’s time to give thanks.

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Last year’s spooky Halloween theme was my zombie left side of my body that didn’t seem to be responding to my brain signals. This year things are considerably less scary.

It was late October last year when I started to notice things weren’t working properly on the left side of my body. I couldn’t quite hold a pencil and my gait was irregular. At that time I was wishing for it to just go away, while also feeling apprehensive about what might be going on. I couldn’t have imagined what was in store for me, starting with a day in the ER in Utica, NY on November 1 and continuing through the end of January and beyond.

Today, one year later, I feel stronger and more resilient than I ever thought I could feel. Really, I didn’t know I had it in me and would have preferred not to be tested at all. But somehow I powered through and am still fighting.

Recovery

Overall, I’d say my range of functionality on strong days vs. recovery days has more or less stabilized. That’s not to say I’m not improving, but it has definitely slowed. I still have a long list of “shoulds” related to physical therapy: home exercises, weights and Pilates at the gym, pool exercises and laps, going for walks, PT at Boulder Center for Sports Medicine and Mapleton Center. And my professional support team is still in place: two PT’s tracking my progress, a Pilates coach, a massage therapist, and a psychologist, not to mention all my non-degreed support crew (like anyone reading this).

I’m getting used to the idea that what I used to call “bad days” are really recovery days. When I’m feeling weak it’s because I did a lot of activity the day before. For example, last Friday I went to the gym to bike and lift weights, then went to Pilates at Sports Medicine, then went out in the afternoon for a hair appointment and shopping. Two months ago I couldn’t have done all of that in one day. So when I was tired on Saturday, I didn’t feel so bad.

Work

In related news, I feel strong enough to go back to working full-time. I quit the job I’ve had for the past four years and am excited to start with a new company on November 8. I’ll be doing the same type of work, developing online training. I’ll go to the local office occasionally but will do a lot of work from home. Having the energy and optimism to apply for and secure a new job is very exciting.

I also ventured into the world of trauma therapy to help me process all I’ve been through. Any time I mention EMDR (eye movement desensitization and reprocessing) to people around here, most have heard of it and know others who have used it successfully. I had my first full session last weekend. It was super intense but I feel like I tapped into some deep rooted stuff.

Celebration

Tomorrow I’ll go for another MRI in the morning and meet with Dr. Corboy in the afternoon to get the results. It has been six months since my last scan. I’m optimistic the results will show a smaller lesion and no new activity. After that, we’re taking off to Cancun for a long-overdue vacation. (While we have had nights away from home in the past year, everyone agrees that our December trip to Mayo clinic in Rochester, my overnights in the hospital in November and January, and Chris’s business trips do not count in the vacation category.)

Last year Chris’s birthday wish was something along the lines of “let it be just MS and not cancer.” This year we are acutely aware of all we have to appreciate and celebrate in our lives and are thankful the diagnosis is just Balo’s Concentric Sclerosis with a good chance for full recovery.

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