Archive for May, 2011

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.


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