Life is one giant puzzle and we spend it simply gathering up all the pieces we can and attempting to put them in some sort of working order.

This week we’re talking the puzzles of life on Outlook - it’s nearly Rare Disease Day, an awareness day that is on the final day of February each year, as every four years it will then fall on February 29th, the rarest day of the year. Sister/co-host Kerry is sharing about recently looking into other possible conditions to add to the diagnosis she and brother/co-host Brian seem to be dealing with, as we also discuss more about the rare syndrome we have already been diagnosed with: Senior-Løken syndrome which includes our retinal blindness, kidney disease, and scoliosis.

Kerry explains why she’s taking things to the next level and what she’s doing such as applying to get into a clinic in Toronto for connective tissue disorders and Brian explains the where and when and what of Senior-Løken.

Kerry brings props into the studio for this one including a giant marble model of the Earth Barry gifted Kerry and the braille heart puzzle she gave BF Barry for Valentine’s Day to illustrate how difficult it can be to sort out proper medical diagnosis for a wide array of physical and mental and emotional symptoms like ours. Also, to make a heart the right way up with the braille in its proper place.

For years, as patients and spending plenty of time at children’s hospitals, there were always puzzles to keep kids occupied, on tables in waiting rooms. Our older brother follows the steps, as he did when he came in, fully equipped, to figure out what the issue was with Kerry and Barry’s surround system speaker while our grandfather always had someone’s homemade wooden puzzle for us to figure out when we visited. Other members of our family have always had double jointed fingers, extra flexible feet and hands, enough that a few hundred years ago we could have been in sideshows, but with Kerry’s latest symptom of daily foot pain we’re reflecting back on our medical past while Kerry receives tests like an ECG of her heart to try to find out more about a possible hyper-mobility condition such as Ehlers-Danlos Syndrome.

We discuss running into our old Braille transcriber at a community spaghetti/lasagna dinner, sports including Canada’s hockey losses in the Olympics and fantasy baseball starting up again, while BF Barry and Kerry announce they’ll be flying with the leprechauns in March, springing once more four or five hours into the future with the clocks about to change and spring ahead.

But before March we’re finishing up February as the boys share about birthday month and Family Day, which Barry fits right in on, with the weekend guys night to celebrate our brother-in-law’s birthday a day after Barry’s and BF Barry looks Kerry up by searching her rare conditions, with a rough sounding voice which might be a clue into all the talking that went into attending guy’s night.

We’re extra rare and BF Barry believes it. Dare to be rare and check out more about Rare Disease Day and this year’s theme of “Action and Access” with the voices of the rare youth and their voices for change:

https://www.rarediseaseday.org