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Dancing to Chumba Wumba's "I get knocked down, but I get up again"

My favorite accomplishment for August was the day I went swimming in the afternoon and then danced with Chris and Liza at our friends Melissa and Brighton’s wedding later that evening. Swimming AND dancing on the same day is a big deal. I don’t know if it’s a good thing or a  bad thing, but my dancing aptitude is pretty much the same. My signature move of keeping my feet in one place and swaying from side to side, more or less to the beat, has not been affected by this lesion. At the end a night of twisting and shouting, when I thought I couldn’t move any  more, they played Chumba Wumba’s, “I get knocked down,” and I found some reserves to get up and shake it one more time.

Lately some good friends have told me it looks like I’m gaining weight. That’s not something a lot of people want to hear, but I couldn’t be happier. I lost close to 20 pounds during the winter, so it feels good to be getting it back. I credit my workouts and my frequent trips to Ripple for self-serve frozen yogurt. (Who wouldn’t gain weight with peanut butter fro-yo, hot fudge, walnuts, and brownies?)

These days my insurance-sponsored physical therapy is Pilates on Fridays at the Boulder Center for Sports Medicine.  Besides seeing Patty, I’m doing a Pilates mat class at my gym. Last Wednesday was my first time doing a class since January 2nd. On that day back in January, I was feeling strong in my yoga class, thinking I was coming out of whatever had me down in November and December. Little did I know I was on the verge of going waaaaaaay down. Needless to say, getting back to class was emotional for me. Still, I had the presence of mind to feel strong, even as the class illuminated the weaknesses I still have on my left side.

Chris is reading The Brain that Changes Itself, by Norman Doidge, MD. It’s a fascinating account of how the brain remaps if some part of it gets damaged. Part of the basic wisdom in remapping says I need to do what’s hard to do, and the brain will find another way to make it happen, if necessary. I’ve already noticed a great improvement in my biking. When I went out for the first time on July 17, I was unsure of my ability to balance. I’ve been out a few times since then, feeling stronger and more confident each time. Today Chris and I rode 12 miles – a route we would have taken on any normal day, pre-lesion. It felt fantastic!

I’m also improving my endurance with work. I had been working 20-25 hours a week, but am now committed to 32 hours a week. I definitely still need a lot of rest but it’s getting better. I  believe my commitment to manage my stress, diet and exercise will continue to serve me well. I realize now this recovery project is going to take a lot longer than I ever imagined. That’s still hard to take sometimes. I like the Japanese proverb: Fall down seven times. Get up eight.

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Perspective

Today’s local paper has an article about a woman in the area who had it worse than me and eventually pushed her way back to an active lifestyle. (Start with impaired mobility and add loss of sight, difficulty with speech, and two small children!) I’m continually amazed at how much physical distress people suffer through before they seek medical attention. Also, the pattern of this auto-immune disease in people with a Type A personality is fascinating to me.

Here’s the link for anyone who needs inspiration to keep going – with or without a brain lesion.

http://www.dailycamera.com/lifestyles/ci_18733381

Still plugging away

Celebrating life - my 42nd birthday

I’m writing today because I know it’s been two months since my last update. It seems like a good idea to chronicle my first year of recovery from the messed up brain lesion that first showed itself last October.

So how am I doing? The title of this post says it all. I continue to improve, and there’s still functionality I’m working to recover. Good things – I’ve resumed swimming and I work on increasing my distance. I go to the pool once or twice a week. The other big accomplishment is getting back on my bike. In mid-July I rode for the first time, with Chris holding my handle bars and seat to keep me stable. The following week I rode around the block solo, and the week after that we went around the neighborhood. It feels like the world is opening up again. I’m going to pilates twice a week as my physical therapy. Once the PT ends in a couple of weeks I’ll be on my own to continue working on rebuilding those pathways.

This entry is short on account of the August heat. Nobody likes it, I know. These days it makes things harder than normal. So that means I’m caught up on my reading and movies, and relaxing with more icy drinks. Cheers.

On the road

At Anna's graduation with Aunt Louise, Mom, and Adam

This month’s post comes from Cleveland and I couldn’t be happier. Happy to be in Cleveland? Yes indeed. It’s a pleasant, sunny day and I’m here for two days of work. Good things are happening. I feel healthy and mobile. Yesterday as I was getting massage therapy (yet another of the therapies I enjoy regularly as part of my recovery), I realized that I feel more in touch with the left side of  my body. For a long time it didn’t really feel like mine. It didn’t respond to the signals I gave it, and I wasn’t really sure who was in charge. These days I feel whole and connected.

I had a couple of great milestones in the past month, none of which were anything a therapist would prescribe. I’m talking about ordinary life events. I got caught in a rainstorm while I was out walking the dog and learned I still can’t run, but I can walk fast if I really need to. Then I came home to find a flooded room in our basement. Rather than collapsing on the couch, which has been my coping mechanism the past six months, I called friends and pitched in as best I could during the cleanup.   (I owe a million thanks to Ellie, Kelly and Tom for their help that night.) This all happened while Chris was out of town for a week for work, so I really had to just push forward. And it was fine.

Last weekend I went to Omaha for my neice’s graduation. The journey was smooth and uneventful and I was very happy to be there with family. And now here I am in Cleveland on my first work trip since November 1, 2010. Before I left for that trip last fall I knew things weren’t quite right, but I didn’t know why. Today I don’t have that sense of foreboding that I had on my last trip. I have a long way to go but when my fingers curl up making it hard to type, or my back hurts, or my leg isn’t swinging the way it’s supposed to, at least I know why, I know I’ll feel better if I rest, and I believe it’s on its way to getting better.

Six months later

Jen's shrinking lesion.

Jen's shrinking lesion

Above is a comparison of my lesion from its worst (Jan ’11 when I was in the hospital) to its best (so far) – May ’11. Thank you all for the good vibes, healing thoughts and prayers. Looks like we are headed in the right direction! 🙂

Last Sunday was the six-month mark since my first scan in Utica, New York on November 1st. I had no idea what I was in for, and it’s a good thing. I still can’t predict the future, but I feel much better about my prospects.

What the professionals say

Dr. Corboy, my neurologist, says my lesion is smaller, there is no mass effect, and there are no new lesions, according to the scan I had last week. This didn’t completely surprise me, as I’ve been feeling better. Still, I was tremendously relieved. Things are so good, I don’t need to return for another scan until November. (Insert happy dance and sigh of relief here.)

He noted “weakness” on my chart; not MS. My diagnosis is still Balo’s Concentric Sclerosis (BCS), which is not the same as MS.  It’s easier for me to talk about my condition as it relates to MS since most people have heard of MS, and even the medical world does not have much experience with BCS. However, when it comes to the insurance community, they have a whole host of policies related to an MS diagnosis that I’d prefer not to have on my record.

Jill, my physical therapist at Mapleton Rehab Center says I’m continuing to improve. Some days I need that reassurance when it feels like nothing’s changing. She listens patiently to my complaints and explains which connections are strengthening and where I need to focus.

Today’s summary: shoulder, trunk, and foot. So, you could say it’s the general head to toe area that needs work. Other than that, things are great!

Celia, my psychotherapist says it’s okay that I’m still processing everything that has happened since November. That’s a relief. It was sort of a huge deal to become hemi-paretic over the course of four days and then spend a week in the hospital getting assaulted with one treatment after another.

My new challenge is to figure out how to appreciate being in the moment, not because I’m afraid I could lose everything again and I feel out of control, but because this moment is all we ever have.

Elizabeth, my nutritionist, says I’m one of the most inventive clients she’s had. After reviewing the results of a blood test to determine my food sensitivities, Elizabeth put me on a sort of cleanse where for 10 days I ate only the foods I could tolerate most easily. For me that meant turkey, scallops, tilapia, green pepper, tomatoes, eggplant, celery, lettuce, potatoes, sweet potatoes, oats, almonds, sunflower seeds, raspberries, strawberries, cherries, apples, olives, basil, paprika, turmeric, cumin, pepper, salt, maple syrup, and raw sugar.

If you think that sounds like a long list, imagine what you’d have for breakfast. Oatmeal? Sure, but no milk unless you make your own almond milk, and no cinnamon. Luckily there’s maple syrup and applesauce, and a leftover baked potato can be used to make a sort of fried potato-oatmeal patty. Mmmm. After a few days, you might get sick of oatmeal, in which case you could fry up some sweet potatoes, green peppers, and turkey bacon for breakfast. Then for lunch or dinner, try soup – but no broth, just that homemade almond milk or water or apple juice if you’re feeling adventurous. You get the idea. I did develop some interesting recipes, but honestly not anything I’d pass along to friends. Even Chris, who willingly eats anything I put in front of him, took his own path during that time.

Now I’m into phase two of the plan, which means I’ve started adding more foods to my diet, but only one new food a day. The first day was salmon, followed by eggs, then quinoa, and today zucchini. I find myself getting very strategic. I really miss garlic and ginger, but I think I’ll prioritize chicken and avocado.

My brave new world

I resolved to shift my perception about what I’m capable of doing physically and emotionally. Even though things aren’t working the same on my left side as my right, I don’t want that to be the reason I decide whether to do something.

My first big move was buying a plane ticket to Omaha for my niece Anna’s high school graduation party at the end of May. I’m excited to share the time with my family, and am willing to forge through the airport with my cane and brace in order to get there. I may not be the most helpful guest when it’s time to clean up after the party, but at least I won’t eat everything in sight, considering my diet plan.

Last weekend I joined my friends Lesly, Elvia, Sara, and Lee at a fashion show in Denver on Saturday night. Wednesday this week I spent an hour and a half helping my friend Hilario learn English. Thursday I went to a Spanish lesson with Judi and Lesly and then to a Cinco de Mayo party at Judi’s house.

This weekend I’ll join Chris working in the yard and enjoying the warm spring weather. And practicing being there, wherever I am.

Wondering what happened between November and May? It’s on the Updates Nov – April page.

Well Crap!

Hi All,

Well, the last time we did a blog, it was under much better circumstances (year long house swap to Maui), so this time won’t be as much fun – but it still is the best way to update a lot of you about what is going on with Jen.

Quick thumbnail sketch:

Jen has a very very VERY rare form of multiple sclerosis. It is called Balo’s Concentric Sclerosis.

***

You’ll notice that there are some different sections here – About, Latest Updates, History, Medical Stuff, Doctors and Shoutouts. Here’s what they contain:

About:

The history of how we got here.

Latest Updates:

The most up-to-date info on Jen and Jen’s progress.
*Read this page from the bottom up. It will make more sense (old posts at bottom, new posts at top).

History:

The convoluted history of how we (finally!) arrived at her diagnosis and plan for treatment.
*Read this page from the bottom up. It will make more sense (old posts at bottom, new posts at top).

Medical Stuff:

Pictures, scans, full MRI files, etc.

Doctors:

Info about Jen’s Doctors.

Shoutouts:

Special thanks page for those random acts of kindness out there! 🙂

And Finally…

Jen and I would just like to say THANK YOU ALL SO MUCH for the great outpouring of love, good vibes, prayers, support, offers of help, etc. etc. etc. – It is truly humbling to have so many great and caring family and friends. We love you all.

Keep the good thoughts coming!