“You are the sky. Everything else – it’s just the weather.” ~ Pema Chodron

Today marks three months post-HSCT and the end of some restrictions; I can now swim in a public pool, take out the garbage, garden, change a diaper…and by April I won’t have anymore restrictions around food, pets, construction zones, or remodeling.

During the last two weeks, physical therapy sessions have focused on supporting specific movements, targeting pain centers, finding muscles (my left hamstring exists?!), and the magical melt of myofascial release, shifting the patterns of spasticity and tone that have seized my muscles in strict tension for the past seven years. Again, I am beyond grateful for the specialized, supportive care of my therapists at Premier Physical Therapy and their capacity to tailor each session, stretch me where I am, then challenge me to push through the disconnected synapses for “four sets of eight” in order to create new neural pathways.

This work also means that the toxins of chemotherapy (15,560 mg of Cyclophosphamide and 350 mg of Rabbit ATG), steroids, antibiotics, anti-nausea medications, and heavy metals like mercury and gadolinium that have been hiding out in my fascia are released into my body for processing and detox. This work can make walking out of physical therapy quite the challenge (aggravated by the daily high temperatures of 14 degrees), though the struggle has yet to discourage me from actualizing impacts of therapy.

Like transitioning to a standing desk.

Throughout my twenties, I served tables and bartended to complement my student loans and make my way through college. Serving tables was certainly interesting, fun, and challenging in its own ways; all too often, guests invited me to finish eating their food (indicating I needed to gain weight), remarked on my resemblance to Celine Dion (which I continue to question), or inquired whether I was a ballerina, noting my grace through crowded space (now a fond memory).

After completing my first graduate degree in 2004, I landed my first professional gig, which kept me seated at a desk eight hours every day. I can vividly remember the struggle in learning to sit all day after years of being on my feet. Yet ever since, my work has involved sitting at a desk, working on a computer. Thankfully I found my yoga practice in 2006, which helped with mobility and flexibility; in 2007 I took to the ellipticals, free weights, and stationary bikes. Although my efforts to keep up with the gym eventually waned, my yoga practice remained strong until jut a few years ago when it became too challenging to be fully presenton my mat – and it certainly supported my transition from standing to sitting as the dominant posture. When the MS (and it’s accompanying drugs) robbed me of balance, sensation other than pins-and-needles in my feet, and ability to stand longer than 20 minutes or walk farther than 20 yards, sitting became my necessity.

You might then imagine the wonder I experienced, quite suddenly last week, when I realized that the pain in my body might not be so intense if I spent more time standing than sitting. Usually I try to cast off the pain, imagining it is my body generating more stem cells as it rebuilds an immune system, or unpleasant side effects of three antibiotics on the daily. Regardless, when I sank down in the couch to start working, I spotted a box that seemed just the right boost for my laptop.

I assured myself, you can carry that across the carpet without tripping now! I reminded myself, last week you stood for two hours in the kitchen without taking a seat. I promised myself, if you get tired of standing, you can always take a rest. I convinced myself, you can get exercise and get work done at the same time. Then I fabricated a standing desk.

I have since experienced that if I am standing, my shoulders might not be so crunched up… which could ease the tone that rounds my shoulders, pulls my elbow bent, curls my fingers, and keeps my left arm tight to my torso. I can practice keeping weight on my left foot… encouraging it to realize comfort flat on the ground, working in sets of heel raises or standing on tiptoes, which helps me find my left hamstring, every time I try to activate it. Rather than compress my spine in a hard chair, I can fold forward or rest an outstretched arm on the chair back.

I know that it will take time to build strength and stamina. I feel that my muscles are eager for the challenge. I hope that my mind remains patient and compassionate to the struggle of transitioning.

Cheers to three months young!

Nourishment this week for my brain = reading + resting + researching + MCT oils + coconut chia blueberry smoothies + quiet spaces + pivot tables + podcasts + origami valentines + contraptions

and body = yoga + stair practice + heel raises + crouched-gait heel-toe walking + stationary bike 3 miles + electric blanket + wool toe socks + wool wrist warmers + wool shirts + wool leggings

and soul = music + contemplative practices + snow days with my daughter

be present. be warm. be well.

8 Comments Add yours

  1. Shannon O'Neal says:

    “Be warm.” I love it! What wonders Spring 2018 will bring! Thanks, as always, for sharing your journey. Great stuff.

    Liked by 1 person

    1. jdskoenig says:

      Thanks so much, Shannon. Hope all is well with you in Chicago!


      1. Shannon O'Neal says:

        It’s going really well so far, thanks! We are entertaining ourselves, he’s hitting the Neupogen and counting down the days. Harvesting on Monday if everything continues to track and back here February 5th for conditioning.

        Liked by 1 person

      2. jdskoenig says:

        In case you didn’t already pick this up, be sure he gets some exercise to cope with the neupogen pain…at some points I felt super miserable and achy but as soon as I started moving, I felt better. Hope all goes well for harvest!

        Liked by 1 person

      3. Shannon O'Neal says:

        That’s great to know! He’s very lucky in that his MS was caught early and he is still pretty low EDSS and very active. I’ll pass it on. Thank you!


    2. Mouhamadou Sadibou diouf says:

      May it be a journey to happiness. Pape

      Liked by 1 person

      1. jdskoenig says:

        Thanks so much, Pape!


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