Dear Running - Thank You!

 

We were so excited to welcome Ruth Anne home from St. Elizabeth's on Friday. She was so excited to come home and get back to running, smoothies, class at Boston College, a part time job on Campus, her gift giveaway and birthday celebration on August 28th, getting a few new tops at Heartbreak Hill Running Company and ordering a few new vinyls. On Thursday morning, she called us at 6:30 am wondering if she could come home on Thursday. We said that would be fine as long as the team agreed. She called to let me know that I had to talk with the resident. She was bummed and I asked her what would help her get through the last day at the hospital. We had a good visit and brought her her favorite foods from Whole Foods-Beet juice, fresh fruit and oatmeal. We hugged good night and she said I'll see you tomorrow as she handed us her belongings to take home. She shared a goals exercise she did and talked about the difference in her this hospitalization from 4 years ago. She was also eager to restart her ibuoprofen and we talked about how PANS/PANDAS or in adults, encephalopathy is very real. She knew that one of the doctors who told her there was no such thing as brain inflammation otherwise your brain would come out of your skull was wrong! She had great insight about what happens to her when her brain is on fire.

She called at 7:30 to say good night, thanked us for bringing the food and how she 'ate it all'.  I teased her and said, "The whole box of oatmeal?" and we laughed. She said how wonderful it was to taste fresh fruit and her body really needed the Beet juice. We said our I love you's. I told her to have sweet dreams and she said the same to you, and she said see you tomorrow.

When she didn't call first thing in the morning I was a little concerned but dismissed it as a flash back to when she was first hospitalized. Tom and I called at 11:00 and we were told by the nurse there wasn't going to be a discharge. The social worker (who we met during our visit) told us that Ruth Anne didn't feel safe with the discharge plan and the hallucinations started again. 

I was absolutely gutted and channeled that energy into putting together a packet of information about her medical history and that she needs an anti-inflammatory medication, possibly a change in the antibiotic and to come off of the anti-psychotic medication that is known to exacerbate PANS symptoms. The social worker was wonderful and set up a team meeting for Monday with the attending. 

When I woke up on Saturday morning, I experienced a lot of muscle spasms. At first I wondered how I was going to get through my 4.5 miles this morning and remembered when I went through a training run with spasms early on in my training. But then I remembered that the power that made the body heals the body AND I can lovingly communicate with my body. I did a cleansing meditation that is available for free on Dr. David Hamilton's website.

I stretched and I visualized. Tom helped me to use KT Tape to give my left leg gastroc muscle and right knees extra support. After breakfast we stretched did a dynamic warm up. I set my Garmin for our 4.5 miler on the road to Bermuda and off we went to the Reservoir on a beautiful sunny day.

We always take time to savor nature's beauty. Every time we run around the Reservoir, there is always different lighting or ripples of the water to appreciate with new eyes.

Unlike last week when we overshot the mileage, Tom carefully tracked the miles to ensure we would go exactly 4.5 miles. I felt strong and steady.  As we came around a bend in the Reservoir, we saw a runner wearing an L Street singlet. We yelled out in unison, "L Street. L Street." It was our dear friend Tom Tomasian from our running club. He said "I only know one person in Brookline so I knew it had to be you." We stopped and chatted about his family and beautiful daughter who is now 7 and a half months old. She was born on Christmas.  They are going to visit his wife's family in Columbia so the baby can meet her grandmother for the first time. He asked about how Ruth Anne is doing and we talked about frustration with the "God complex" of doctors. He said he had her in his thoughts. We both agreed that she needs medicine of fresh air, a good run and sunshine. 

Tom and I talked, vented, sent prayers and love to Ruth Anne and expressed gratitude for the gift of running in our lives. We had a solid 4.5 miles on the road to the Bermuda Triangle Challenge 10K with negative splits and a pace that puts me in the finisher's chute well under 2 and a half hours. At the end of our run together, we visualized the epic finish for Team McManus.

Tom had another 3.5 miles to run on the road to the Bay State Half Marathon. That will be the third half marathon in Ruth Anne's Trilogy of Half Marathons for Victory Programs. On August 5 of last year, she was inspired to run 3 half marathons and raise $10,000 for Victory Programs. In May she finished a fundraising campaign of $8000 by running the Providence Half Marathon with Tom.

After I stretched and changed, I met Tom at the Route 9 Reservoir to cheer him on to a strong finish! He poured sweat as he kept a steady 13 minute mile pace. I let the calm waters and the warm sunshine settle my soul as I felt the cleansing power of the sweat from my 4.5 miles.

As we drove home, we continued to express our gratitude for the gift of running in our lives saying how we don't know how we would navigate this challenge with Ruth Anne's ultramarathon of healing without the gift of running in our lives.

Dear running, thank you for all you have given us through the years and especially during the past several weeks.

From my heart to yours
In health and wellness,
Mary

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