A Retired Spoonie – week 2

Week two of retirement went by quickly, too quickly. We did more tinkering with the winterizing of the RV and got things set up mostly the way we want. A cold snap heading this way. Big events for this week were Drs. LOTS of doctors. Superhubs had his annual SCID (Spinal Cord Injury and Disease) check up. This is a grueling, exhausting, day long evaluation of his current condition and the progression of his Multiple Sclerosis with all it’s myriad symptoms. We left home shortly before 6:00 am and got home shortly after 4:00 pm. About 2 hours is drive time but the remaining 8 hours are spent at the clinic, Ultra sounds, blood work, and meetings with every known doctor, therapist, and specialist. Whew! It was a mostly good news kind of day. The good news is that he’s not lost much in the way of functionality which means he’s recovered nearly all of what he lost from 2019’s brain surgeries and strokes. The kind of “bad” news is that while he has very little in the way of MS relapses or exacerbations, he does have secondary progressive MS, which is a fancy way of saying he’s not going to get any better and now it’s just a matter of deal with the old damage. He was diagnosed back in 1999 and actually had the disease for years prior to that (based on lesion age) so for somebody with a 20+ year history of MS, he’s doing really well and I’m thrilled with the progress he’s made. There comes a time in every spoonie’s life when “no further deterioration” is excellent news. He has lost a bit more cognitive function but nothing drastic or inappropriate for his age. So we’ll continue to work on cognitive aids, physical therapy exercises for that right side (partial paralysis from strokes) and enjoy life!

The next day, I headed off for my much anticipated (and dreaded) cardiac MRI. The weather held good and the short drive to the radiology clinic was nice. It’s not a painful or invasive procedure but it is somewhat extensive and it involves a full 90 minutes “in the tube.” I spoke with the sedation nurse last week and was given permission to “self sedate” (aka pop half a valium) before the procedure. IV in; no problem, questionaire complete; no problem, cardiac stent; no problem, total knee replacements; no problem, interocular lenses; no problem, eye stents …. oh wait, you have what?!? Which ones? Huh? Although I do not believe I have any metal in my eyes from the drain/stent procedure to reduce my eye pressures (glaucoma), there are a couple that involve tiny amounts of titanium. Long story short, could not get a confirmation of the absence of any metal in the implants so, they sent me home and rescheduled for next week. Huh … well OK then.

That was enough drama for me for one week, so I spent the rest of it trying to establish a new schedule.

What we’re listening to

Til next time ~Peace JP

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