I was in the hospital; waiting for the next step, waiting to get better, waiting to get worse. Waiting. Then I took matters into my own hands and took a leap of faith on my recovery, my determination and my body’s ability to heal. With my parents unwavering support, I am now ensconced in a skilled acute rehab facility.

What the heck is a SNF (read: sniff)?

There were two options under consideration in the hospital on where to transfer me to, a Skilled Nursing Facility (SNF) or acute rehab. There was no guarantee in my 11-day hospital stay that insurance would approve either. We went for acute rehab and were denied, multiple times. The funny thing (read bitter, not sarcastic) is that the reason given for their denial was that I am not medically complex enough. The irony is great, it made both my neurologist and I laugh at the absurdity. I was told in the 11th hour, minutes before hospital discharge, that I would be approved for a SNF. By that time, my bags were packed, and I had a bed secured at the acute rehab facility near my house.

For those that don’t know the difference, a SNF would provide an inpatient hospital stay at a different Cleveland Clinic hospital than I was currently at. This specialized floor within the hospital, designed for rehab, provided one hour of general physical therapy (PT) a day. The acute rehab facility was specifically designed for three hours of rehab a day, including weekends, with occupational and physical therapists. SNF provided general rehabilitation, whereas the therapists at acute rehab have experience in neurodegenerative diseases.

At the time, I was receiving PT and OT visits in the hospital that were mainly distance walking, and the occasional stairwell test. This minimal activity wore me out, but there was no way to rest, recharge, and have additional therapy in the same day. I was not being tested or truly challenged. The inpatient hospital set up is not designed for the realities of MS with physical fatigue. I was worn out, sick of being in a hospital, still in pain from shingles, going a bit stir crazy, annoyed with the insurance process, and tired of waiting to get better or waiting to try to get better. I was exhausted from my PT and OT in the hospital but desperate to be pushed in specific ways targeting my specific needs.

For goodness sakes, speak up!

This isn’t a rant about our broken health care and insurance system. This is a continued reminder to talk clearly with your doctors. Outline what your goals are and what you want and need. Ask any and all questions. Make sure they are on your side. If you don’t understand what they are saying or why they are prescribing something, SPEAK UP! My doctors fought for me. I had two neurologists on inpatient service while I was in the hospital. The first from Monday to Sunday. The second from Monday to Thursday. The second doctor was a badass in all ways. He was energetic, articulate, funny, and kind. He fist bumped on the way in for rounds and on the way out. He even called my neurologist so the three of us could talk options, together. The docs were on my side. We were aligned. They understood what makes me, me. They went to bat for me. We lost this round, but we tried. I know my body and I knew what it needed.

Competitive, determined and a bit scary

So how’s it going in rehab? I’m closing out day five and I am tired, exhausted, emotional, cagey, and elated. I am doing well, making huge strides and improving daily. I am doing what I knew was possible in the hospital, proving daily — with tangible examples — why I deserved to be here. But this is hard work.

Every single PT and OT therapist I’ve seen has remarked in one way or another that I am motivated. The phrase or wording changes, but the sentiment remains the same. It is also conveyed as if I am odd, or this is unusual. Upon hearing confirmation of my motivation, my determination, my drive, I wonder: what the heck is everyone else like? I know it’s easy to take mobility, movement, and function for granted. Heck, I did that my entire life until shit started breaking down. But in the face of adversity, why is it uncommon to rise to the occasion? I guess my response to them is this: What would you do to walk? What would you do to maintain your independence? I will crawl, claw, and fight to improve my walk, to build strength, to be independent.

Some of the OT activities I’ve worked on include, stepping into a shower, standing at the kitchen stove and grabbing things from low and high shelves, folding laundry while standing, and other basic life tasks that are easy for most but downright challenging for me. PT is quite varied. We’ve worked on strength, endurance, form, flexibility and stamina. We are trying to wake up certain pesky muscles including all those that go into dorsiflexion as well as my hamstrings and hip flexors.

• 5 days ago I couldn’t lift my feet, today I can
• 5 days ago I couldn’t march, today I can
• 5 days ago I couldn’t stand longer than 45 seconds, today I stood for more than 5 minutes
• 5 days ago I couldn’t go up stairs, today I went up 12 stairs
• 5 days ago I couldn’t get down and up from the floor, today I transferred from the floor to the chair
• 5 days ago my distance walk was 45 feet, day 2 was 70 then 76 feet, day 3 was 90, 64 and 70 feet

These statistics and improvements mean independence, plain and simple. If I can stand for longer periods of time, I can cook myself meals, empty the dishwasher and put away groceries. If I can march, lift my feet, and activate my hamstrings, I can walk with greater ease, for longer distances. If I can do stairs, I can safely be in my home. On the bulletin board in my room it says PERSONAL GOALS. My answer, boldly written in the top right corner is “TO BE ABLE TO WALK UP STAIRS…AND MOUNTAINS.”

I may have been kicked back to the starting line by shingles, but I will not stop trying.

Health-esteem

I follow a MS-specific physical therapist on social media named Gretchen Hawley. She has a tremendous program called the MSing Link. I’ve followed her content for years and find her to be genuine, relatable, and amazing. She happens to have an identical twin sister Samantha, who I also follow and have chatted with, quite candidly, over Instagram. It was in one of Samantha’s posts that I first read the term “health esteem.” I loved it. My mind started twirling and ruminating over this turn-of-phrase and the life implications.

How do you view your health and your relationship to the activities that comprise health? What in your health is a must or a should or a maybe or a never? Is movement only valid if it’s exercise? Does exercise only count if done a certain way? Is health about your relationship to food? To exercise? To be a desired weight? To fitting in a particular pair of jeans? Are you worried about calories or following a specific diet? Does your health include mental and emotional or just physical?

My health esteem means moving my body, quieting my mind, and doing things that bring me joy. I have a hand-written sign on my room at rehab that says “Do not disturb between 10pm – 7am!” I asked the question of my nurses, figured out a work around, and told them I need uninterrupted sleep. I was challenged based on “hospital protocol” but I prevailed and am much nicer because of it. So I’m moving my body during the day, physically pushing in a way I can’t do at home, I’m guarding my sleep, and I’m counting down the days until I return home. When my days in rehab are difficult, I think about small things that seem monumental — making my own cup of coffee in my kitchen, petting my dog and playing with him, and sleeping in my own luscious bed.

Everything I do is for 10,000 small moments in a day that comprise an independent life.

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