Guest Author: A Roller Coaster of Recovery

I’ve been writing this blog for almost a year and some of the most popular posts are those from my mom. I’m not offended by her popularity, in fact she is more active on social media and has a larger social circle than I do. I love that people want to hear her voice and experience. Her friends and her village have been a constant in my recovery as well. I’m grateful for the kind words and gestures from people who love my mom and support her, but who I have never met.

So thank you to my mom’s friends, her WOW ladies, her artist posse, her book club, her village. My mom can take care of me because you take care of her. You have my endless thanks and gratitude.

Carolyn

I assume by now you have read Carolyn’s new blogs about the month of February (here and here) but I would like to sum it up in a few words: “What the hell?”

The last weekend of January, Carolyn had a dinner party and logged 7,300 steps that day. There was still a long way to go before she was back to pre-transplant strength but all the markers were pointing in the right direction. She was independent and getting stronger each month. Before the next week was out, she was in the emergency room with excruciating pain in her left arm. She was admitted and was finally diagnosed with Shingles. In her post transplant, baby vaccine schedule, she was actually scheduled for her Shingles vaccine on March 10^th. Irony is a bitch.

So, her February hospital odyssey in a nutshell: in February 5^th, out February 8^th; in February 10^th, out February 13^th; back in February 20^th and now in a holding pattern.

As a parent who is trying to be supportive I want to fix things. I want to wrap her in cotton batting so she doesn’t bruise each time she falls. I want to install a chair stair lift so she can get to her second floor. I want to find a one-story home with a fenced in back yard for her and her sweet black lab. But none of those decisions are mine to make. It is vitally important to remember my adult daughter is capable of making her own decisions. She’s living with MS and recovery and I am just a spectator.

So my anger is directed right now at a healthcare system that thinks revolving door hospital stays are more efficient than giving her a week or two of care at a skilled nursing facility or acute rehab center, to bring back the strength in her legs. After being denied by insurance, the system goes to peer-to-peer review. So a Cleveland Clinic doctor who is watching Carolyn try to walk is arguing with an insurance doctor for approval. This was also denied on Friday morning. Step three is an appeal process. Insurance companies don’t work over the weekends, so she is left in the hospital… waiting.

I think the peer-to-peer review should be done by the mother. My daughter wanted to spend one night in her home, see her dog (who a neighbor has been taking care of for weeks now) and be around her own things. Let me talk to them and describe how once we got her up the two steps to her deck, she crawled on her hands and knees over to the door. We put a chair there so she could lift herself to a sitting position. After a rest, she moved to her rollator to get over the threshold into the house. Let me describe that with all the accessibility aids available to us (non-slip mat, grab bars, shower chair) she still fell in the shower. She is not safe alone right now. I am not a health care professional and I know that what she needs right now is help, targeted rehab to improve her walking, stability, and endurance. It is not safe for her at home.

I don’t share any of this so you say, “Poor Carolyn.” I share this because every fall, and every time she gets up again, is a testament to her strength and resiliency. I believe she will get through this. I have to believe in her neurology team. I just wish insurance and healthcare was more on her side than being an obstacle to healing and her health.

The Mom