Catalyzt
Well-Known Member
- Region
- USA
What a tremendous thread! Alaskan, two of your quotes really inspired me: "Life owes me nothing" (yes, that one's been around for a while, I guess) but also, "I ride anyway." That's a song, book, or album title right there!
My health issues are less acute, but more long-running-- but I really relate to Alaskan's sentiment of just not feeling it, and then saying "to hell with it" and jumping on the saddle anyway. My connective tissue disorder first showed up on a bike trip, actually, cycling from Jacksonville to St. Petersburg FLA in the early '70s-- I was just more tired than I thought I should be, and had to stop and lie down a few times a day, which didn't seem right for a 15-year-old kid.
(Cyclefanatic, man, I hear you about the long diagnostic road and the rare disease thing-- thanks so much for sharing your story. I'm 63, my first dx at 15 = Lupus, currently MCTD, which has a different antibody marker, but is very similar to Lupus. And I have blood chemistry issues too, though it's not clear exactly what triggers them, or what the prognosis is.)
Anyway, the next year, I started getting high fevers every two weeks, and missed 1/3 of my Junior year of high school-- but if I was well enough to go to school, I was well enough to ride, which I did whenever weather permitted. I went into remission in senior year. I was an OG Manhattan urban racing bike maniac before the bike-messenger thing even got started.
Next crisis was late Freshman year of college, pericarditis, inflammation of the lining of my heart. Limited to 100 BPM, activity restrictions were lifted after a few months, but the docs warned me the symptoms would probably come back a few times, though not as bad. I remember a trip to Yosemite in '82 when the heart-rate restriction got turned back on, and just like Alaskan, my buddies were the best. They'd figure out hiking routes where I only did the easier bits, and they could rendezvous with me later, planned the entire vacation around my health restrictions. We're still as tight today as we were then.
Moved to LA in 1991, and very few symptoms until my early 50... first, a massive ileofemoral DVT in my left leg-- immune disorders can screw up your coagulation, and we think it was that combined with a very minor skiing accident-- and my doctor cut me off from skiing and body boarding when I went on blood thinners. 18 months later, we discontinued the blood thinners, and I went back to skiing and boarding, had a few great years before the second DVT in the same leg. So then, I became a lifer on blood thinners-- but my doctor's attitude changed when her own brother died. Life is short, and she could see how outdoor sports really helped me, so the new rule was: Be careful. No crazy big days in the water, no night or weekend skiing.
Almost immediately, I was stung by a stingray in my bad leg! What should have been a three day recovery was more like four months. At first, I was so angry I sawed up my board and stuffed it in the recycle bin. My left foot is still swollen and kind of blue to this day, but after months of slow swimming in my backyard pool, most of the function came back.
Then I got a better board, fins, armored booties, quit smoking, stopped drinking and smoking weed, and learned how to REALLY bodyboard. I never would have guessed it, but my best skiing and boarding was probably in my late '50s! I had to learn to do it right-- I didn't have the strength to do it wrong. I even went scuba diving in 2017, just hounded my doctor and kept training until she gave me the green light.
All this time, I'd been trying to keep up my biking in the winter-- it was always painful here in the hills, and after the second clot, my route was really limited, I'd skip the biggest hills, but still end the rides often feeling worse than I started. I still skied until 2019, but had my first round of diverticulitis that summer-- probably the immune disorder again + twisted colon, though hard to know. My second attack was fall of last year, and was much worse-- lost a lot of weight, got super weak, IV antibiotics at home for two weeks, and then had an atypical allergic reaction to the antibiotics that was as dangerous-- or more so-- than the diverticulitis.
In December, I couldn't even walk the dogs up the hill to my house, I was that weak. Now, I'm riding a little less than half the distance Alaskan rides, but minimum of 800 feet of vertical for the smaller rides and 1,500+ for the longer ones and I'm getting over 200 minutes of serious cardio every week. I'm a psychotherapist, my schedule is full, and e-biking not only helps me physically, it helps me clear my head. I have nothing like the stress of front-line healthcare providers, but hearing about the carnage from COVID has not been easy, it completely changed the work I do. So much is about safety planning now. I work with college kids, mostly young adults, many international students who are worried about their families back home, and I've been hearing unthinkable stories from all over the world.
I don't know which direction my own health is going; I kind of don't have a good feeling about it-- either the musculoskeletal or the GI problems. It's not unusual for me to need a cane for the first few hours when I wake up-- more for safety to avoid any fall risk-- but to ride 15 miles / 1,500 feet in the evening.
Yeah. "I ride anyway." I'm going with that!
My health issues are less acute, but more long-running-- but I really relate to Alaskan's sentiment of just not feeling it, and then saying "to hell with it" and jumping on the saddle anyway. My connective tissue disorder first showed up on a bike trip, actually, cycling from Jacksonville to St. Petersburg FLA in the early '70s-- I was just more tired than I thought I should be, and had to stop and lie down a few times a day, which didn't seem right for a 15-year-old kid.
(Cyclefanatic, man, I hear you about the long diagnostic road and the rare disease thing-- thanks so much for sharing your story. I'm 63, my first dx at 15 = Lupus, currently MCTD, which has a different antibody marker, but is very similar to Lupus. And I have blood chemistry issues too, though it's not clear exactly what triggers them, or what the prognosis is.)
Anyway, the next year, I started getting high fevers every two weeks, and missed 1/3 of my Junior year of high school-- but if I was well enough to go to school, I was well enough to ride, which I did whenever weather permitted. I went into remission in senior year. I was an OG Manhattan urban racing bike maniac before the bike-messenger thing even got started.
Next crisis was late Freshman year of college, pericarditis, inflammation of the lining of my heart. Limited to 100 BPM, activity restrictions were lifted after a few months, but the docs warned me the symptoms would probably come back a few times, though not as bad. I remember a trip to Yosemite in '82 when the heart-rate restriction got turned back on, and just like Alaskan, my buddies were the best. They'd figure out hiking routes where I only did the easier bits, and they could rendezvous with me later, planned the entire vacation around my health restrictions. We're still as tight today as we were then.
Moved to LA in 1991, and very few symptoms until my early 50... first, a massive ileofemoral DVT in my left leg-- immune disorders can screw up your coagulation, and we think it was that combined with a very minor skiing accident-- and my doctor cut me off from skiing and body boarding when I went on blood thinners. 18 months later, we discontinued the blood thinners, and I went back to skiing and boarding, had a few great years before the second DVT in the same leg. So then, I became a lifer on blood thinners-- but my doctor's attitude changed when her own brother died. Life is short, and she could see how outdoor sports really helped me, so the new rule was: Be careful. No crazy big days in the water, no night or weekend skiing.
Almost immediately, I was stung by a stingray in my bad leg! What should have been a three day recovery was more like four months. At first, I was so angry I sawed up my board and stuffed it in the recycle bin. My left foot is still swollen and kind of blue to this day, but after months of slow swimming in my backyard pool, most of the function came back.
Then I got a better board, fins, armored booties, quit smoking, stopped drinking and smoking weed, and learned how to REALLY bodyboard. I never would have guessed it, but my best skiing and boarding was probably in my late '50s! I had to learn to do it right-- I didn't have the strength to do it wrong. I even went scuba diving in 2017, just hounded my doctor and kept training until she gave me the green light.
All this time, I'd been trying to keep up my biking in the winter-- it was always painful here in the hills, and after the second clot, my route was really limited, I'd skip the biggest hills, but still end the rides often feeling worse than I started. I still skied until 2019, but had my first round of diverticulitis that summer-- probably the immune disorder again + twisted colon, though hard to know. My second attack was fall of last year, and was much worse-- lost a lot of weight, got super weak, IV antibiotics at home for two weeks, and then had an atypical allergic reaction to the antibiotics that was as dangerous-- or more so-- than the diverticulitis.
In December, I couldn't even walk the dogs up the hill to my house, I was that weak. Now, I'm riding a little less than half the distance Alaskan rides, but minimum of 800 feet of vertical for the smaller rides and 1,500+ for the longer ones and I'm getting over 200 minutes of serious cardio every week. I'm a psychotherapist, my schedule is full, and e-biking not only helps me physically, it helps me clear my head. I have nothing like the stress of front-line healthcare providers, but hearing about the carnage from COVID has not been easy, it completely changed the work I do. So much is about safety planning now. I work with college kids, mostly young adults, many international students who are worried about their families back home, and I've been hearing unthinkable stories from all over the world.
I don't know which direction my own health is going; I kind of don't have a good feeling about it-- either the musculoskeletal or the GI problems. It's not unusual for me to need a cane for the first few hours when I wake up-- more for safety to avoid any fall risk-- but to ride 15 miles / 1,500 feet in the evening.
Yeah. "I ride anyway." I'm going with that!
