It's the middle of December and I am way overdo for a blog post. I'm also not sending Christmas cards again this year (sorry), so am going to be a little goofy and post a 'Christmas letter' of sorts to bring y'all up to speed. Keep in mind that it's been a hell of a year but the positives definitely outweigh the negatives and I have truly come a long way! Scott and I are ever grateful to our friends, family and colleagues who have been so supportive and understanding over the last three years. You have each made this difficult transition a little easier.
Gwen and Scott (it's a Christmas letter, we will refer to ourselves in the third-person) have had yet another roller coaster year adjusting to life with CIDP. January started with a hopeful list of resolutions that were temporarily moved to the back-burner when Gwen was struck low by sepsis (an event that is not worthy of a Christmas letter and will, therefore, receive only passing acknowledgement). In retrospect, she did manage to follow the resolutions through much of the year. She is still waiting to try snow-shoes, but the year isn't over yet!
The winter and spring rolled along with what has become the same-old routine: physiotherapy, occupational therapy, five days of IVIG every four weeks, choir to keep Gwen sane and books, lots and lots of books. Gwen did have the bittersweet experience of changing physiotherapists. She gets very attached to her 'people' so this was a scary prospect. Luckily her new physiotherapist is also her old physiotherapist, so it was a smooth transition. She continued to make slow and steady progress - first using a cane at home, then walking (stumbling) around the house with nothing. Once the snow melted she began dabbling with the cane outside too.
In April Gwen and Scott took a brief trip to Ontario where they had a blast catching up with old friends and colleagues and eating 'all you can eat' sushi. Scott attended a conference for a few days in Toronto while Gwen lived it up in the hotel and surrounding blocks. She even squeezed in a trip to the ROM. It was a lovely, if short, get away.
Spring eventually changed to summer and the routine (minus choir) continued. In early July Gwen discovered she could wiggle her toes a bit, which caused much celebration. She also had a weird brush with vertigo and an inner ear blockage. It was a bit of a scare but turned out to be an easy fix with the magic of physiotherapy.
In August Gwen was subjected to a round of electrocution (EMG/nerve conduction tests) to get a better idea of what was going on in her wrists. The tests confirmed nerve damage but were inconclusive about whether it was from CIDP or Carpal Tunnel (or whether or not it is surgically fixable). An MRI was ordered and Gwen will happily report on the results of this test sometime in 2021 (sarcasm, but she is still waiting for an appointment). In the meantime Gwen continues with occupational therapy and tries to avoid overuse.
The fall has been a little difficult as Gwen found out that she would not be returning to work. After three years her employer was no longer able to hold a spot for her. This was not a surprising development but still disappointing. But, being ever the optimist, Gwen is embracing retirement and making the most of it. Gwen and Scott both took advantage of her birthday present and are teaching themselves how to play the clarinet! They have a long way to go but are having a blast with it. Gwen started writing a column in the local paper about the Cape Breton Chorale and is really enjoying it. She also started going to the pool and looking for volunteer opportunities. In other words, boredom is not an issue.
The non-medical highlights of the season include a weekend getaway to the Cabot Trail Writer's Festival with a good and patient friend, which is sure to become an annual tradition. Scott and Gwen also made their jazz duo debut (not on clarinet) in late November and had a blast playing/singing together. He finally got Gwen out of her choral comfort zone. Physically, the highlight is that Gwen can now stand on one leg for about 3 seconds. Perhaps standing yoga poses are not so far off. Medically, she supposes the highlight is finally getting off Prednisone. After 2.5 years Gwen is finally steroid-free and ready for international competition! (well, maybe not that last part).
So there you have it, to paraphrase Gandalph, life goes on much as it has this past age, full of its own comings and goings, somewhat less aware of the existence of CIDP, for which I am grateful.
Happy Holidays, Merry Christmas and Happy Festivus to the rest of us. Here's to an even less exciting 2019!
