2020-08-28

wellness log: stardate 2020.08 and some change

a quick recap, for those who don’t know. i was diagnosed with sarcoidosis years ago (2004). over time the small fibroid tumors in my lungs have gotten progressively worse such that i am now at somewhere around 40% lung capacity (probably a bit less) and have failing oxygenation abilities. ergo: supplemental oxygen. i also have a wacked trachea that pulls severely to the right, affecting speech, swallowing, etc., and giving me some discomfort if i’m being completely honest.

when last i sent out an update (april 2020), i had just begun being evaluated for inclusion in the UCSD lung transplant program. i went through beaucoup testing and consulting with various and sundry medical professionals. to cut to the quick of it, eventually i was told that i was not eligible for a lung transplant. there were many reasons, chief among them though was that it would be too risky for me due to my specific issues. the news was bittersweet. it’s frustrating not to have a transplant as an option, of course, but honestly, i did not expect a different outcome.

that said, all in all it was a tremendously positive experience. i’m eternally grateful to the doctors and medical team at UCSD who went out of their way to evaluate my medical issues so thoroughly with an eye to helping improve my quality of life now and not merely as a prospective patient.

while i am still on prednisone, it’s not a lot—it’s manageable. i’m still on some amount of painkillers, but a lowish dose to keep the dull owie thud to a minimum. i did go through some pulmonary rehab appointments which taught me exercises i am able to do safely with my specific condition. check out my getup. aren’t i adorable?


one of my few outings to pulmonary rehab

see that thing on my head? it’s a clever new O2 saturation sensor for the forehead. this method is preferable to the more common finger oximeter which notoriously falls off and doesn’t read as well while exercising.

rehab seemed to help, but since i’ve stopped going in for the sessions, it’s up to me to do the exercises at home—on my own. news flash: i am not as consistent about exercising at home on my own recognizance. 

all my doctors’ appointments are currently online. and i have—for a limited time engagement—my very own speech therapist to help with the vocal cord issues i struggle with. and other than that, i manage. but i manage with help from an amazing palliative care team and an incalculable amount of help from my fabulous, ride-or-die skypeeps. (for more on my skypeeps, check out the about and game pages.) 



blog entry number one

most articles on blog best practices advise us newbies to have creative, intriguing blog post titles that draw people in and make them want to click on it. as this is my first entry i thought i'd spend even MORE time working on it. i hope it reflects the level of effort that went into it.

in early april, when last we left our heroes, they were just entering the sweet spot of quarantine. sharing funny memes. trying out new recipes. rediscovering old photos of loved ones from their cute and cuddly days of yore. appreciating sweatpants on a whole new level. their border-in-law, zum, was just about to emerge from his own sub-quarantine in a small room to join the other three in their home. samson was in zoom school, phil was working from home and beth…well, we’re not at all sure what beth was doing. honestly, everyone was just trying to leave her alone so she’d stop threatening to cut their hair with the new clippers she found online.

and now there’s this. august. summer. and everything that’s passed in the last four months.

if april was the sweet spot of quarantine, then by july i was like:

i am so OVER this whole pandemic thing. it has totally jumped the shark for me. new programming, please!

and yet, the programming raged on, undeterred.

so, we dug in, and dealt.

let me bring you up to date.

it would be madness to try to enumerate the entire blessed tedium of four long months. but there’s no reason i shouldn’t at least try to bore you with some of the highlights. here we go.


BEGIN MONTAGE
  • zum emerges like the proverbial groundhog in time for easter
<click on photos to enlarge>





samson still enjoys a good egg hunt. however, we've heard rumors that the easter bunny that services this part of town is considering retiring. not sure if that's true or not. more information as the story develops.

 

     







  • via communal decision-making phil is allowed to turn some-number-of-years-old on april 28th just prior to his son’s impending may birthday
do you like my party hat?


zoom surprise party: it's a thing.


zum on zoom. it's another thing.


chocolate cake with chocolate and then a little added chocolate. 
may this always be a thing.

  • in spite of a pandemic, samson runs headlong into 10-years-old on may 15th




yes, he LOVES tanks. did i mention that?


zoom birthday party. it's so may 2020.

someone got a hamster for their birthday! 
(from his sisters, belinda and leilani -- and 
in case you're wondering, he was dubbed: pumpkin melon)


our birthday boy


  • school’s out for summer, laissez le bon temps rouler! (let the good times roll!)
let's see. now where did i put those clippers?

  • july 4th: hot dogs over the fire & cornhole at sundown. beat that!
  









  • at one point my son was in such desperate need of summer camp activities that he created his own. i present to you: pantry camp.
yes, we needed a permit to enter


i did notice, in hindsight, that pantry camp had a lot more snacks than activities.

  • the months were also full of sports, especially pickleball, which uncle zum introduced not that long ago. and it's something we can play in our driveway.
<click on videos below to make more big>




i present to you: one pickleball


there were so many sports and games played over the past few months that, spoiler alert, expect some postings on that subject in the near future.


END MONTAGE

after ending the montage, i realize that even though there are few words with photos, each one is worth, roughly, what, like ten hundred words? the blessed tedium has become more tedious than i anticipated so i'll wrap this up here, in july.

there is so much more to share with you (arts and crafts, cooking, camping, the entire month of august). for example, i haven't even mentioned that my new hobbies are:
  • finding the pangram in the new york times daily spelling bee game
  • growing my hair long and gray (you can picture it. go ahead, i'll wait.)
  • pretending whatever i just did counted as exercise (which i think it should considering all the mental gymnastics i go through to get there. i'm sweating just thinking about it!)
what are your new hobbies?

thanks for visiting! i look forward to our next catch-up when i take you back to the future!*



*that was a teaser. (another blog best practices for endings.) how'm i doin'?




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