Having a one-and-only health condition as I do, there’s no use asking doctors or anyone else what I SHOULD be able to do. The body itself is never constant, and the environmental triggers definitely aren’t the same moment by moment. Add in the medication changes and experiments, including the allergy immunotherapy shots I started today, where is my edge? A: it’s always shifting.
How do you find out where your edge is? I just keep pushing my limits. If I take a step forward and I’m ok, I take another step. I keep taking steps forward until things start falling apart, like I’m feeling right now. The most exciting things I’ve ever got to do has been at the edges, at the limits. Taking the motorcycle course last week, for instance. For much of my life that was something I’d never imagine I could do, and for much of my life there was no way I could. That was reality then, but not now. I completed that course feeling physically better than I thought I would, though I did feel a few days of fatigue earlier this week (as expected). That’s a likely sign that I’m close to the edge, but not quite there. So? Yesterday I pushed again, taking the immunotherapy allergy shots around noon. Didn’t feel any of the common allergic reactions, but did get quite fatigued in the afternoon. Still, decided to go to a church event at Boomer’s Family Fun center. Go karts, miniature golf, arcade, that sorta thing. First time in a batting cage, slugged at balls at 70mph in the fast cage. This morning, didn’t have the strength to get out of bed and go to today’s full day of continued activities. Found the edge! But what an adventure in finding it the last 2 weeks.
I may be an extreme case health-wise, but finding the edge is important for everyone. Most people stay far from the edge, the Nebraska or Dakotas of their existence. The comfort zone. I felt like I was taking a vacation in the comfort zone a bit recently, and it didn’t feel good. I felt soft, and I ain’t. Between the comfort zone and the edge is where you’ll find yourself. Where dreams happen. I had a friend tell me that she’s been so lucky getting every job she applied for. Yes, having a humble and grateful attitude is so important to doing things well. But I also told her it probably means she’s overqualified for everything she’s applied for so far. Maybe she’s found what she’s good at, but what about things she’s great or the best at? Makes me wonder how much of the gifts we’ve been given do we really use? Staying in the comfort zone, we may only be living and knowing 10% of who we are? The other 90% going to waste, never seeing the light of day. With this one trip to mortality, bringing with us bags and bags of talent and potential, why aren’t we busting out the 90% of the coolest stuff instead of just getting by with the 10% of stuff we’re used to?
So go! Be 100%. Just remember, don’t get too excited charging at the edge and do this:
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- 05.18.13 / 6pm
Emotions are hard to put into words, especially in the moment of feeling overwhelmed. Learned my cousin AnSun’s newborn daughter Kaitlan Senna Wang just passed away. Here’s what they wrote of her on Facebook:
“Baby Kaitlan was born on March 30, 2013 and suffered from apnea and seizures which caused her to be admitted into the NICU @ Orange Coast Memorial Hospital. 10 days later, after failing to find a diagnosis, she was transferred to CHOC Hospital in Orange, where she underwent an extensive battery of testing. For 5 weeks, she fought so bravely as the drs and specialists continued to search tirelessly for answers. Last friday, May 10, she was finally diagnosed w/ a very rare metabolic disorder, and drs explained that she would not live past infancy. She spent her last 6 days with mommy and daddy by her bedside sharing loving cuddles and kisses around the clock. Last night, on May 16, we sent our angel Kaitlan, back to Heaven to be w/ the Lord, our God. She is finally free and no longer suffering and we are comforted in knowing that she is now in a better place…in Heaven. May she rest in peace forever and we look forward to being reunited w/ her someday in God’s Kingdom.”
Can’t help but feel deep sorrow for AnSun and his little family. I’m sure whatever sorrow I’m feeling is nothing compared to what he and his wife Michelle are feeling and have felt as parents, being alongside their baby girl through her short, tough stay in mortality. What do I say to comfort them? Maybe the more important question is whether trying to comfort them is what they need? Or just feel with them what we as human beings should feel when a loved one goes first beyond the veil? There is a time and season for everything. Right now, it’s time for grieving. All I could say was I wish I could’ve known little Kaitlan. Spent some time with her. She’s family.
And I don’t know how to express that families are forever. An impression, a feeling came over me, though. That Kaitlan is doing great. Not only that, but I told my cousin what I felt, which was this girl not only WILL BE but IS a part of their family. She’ll be a constant angel around each of them, and I pray they’ll know to experience her in their lives. It is one thing to wish or hope to see each other in the eternities, and another to know with a sure feeling right here, right now.
The best I could come up with is telling them ”
obviously she’s a strong and courageous girl
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- 05.18.13 / 1am
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Riding a motorcycle is a skill I’ve always wanted, but it was always more of a fantasy than a possible future. I’ve always wanted to ride a motorcycle, drive stick shift, shoot handguns and rifles, learn archery, and fly planes and helicopters. Kind of my James Bond training list or, if that didn’t work out, Zombie Apocalypse seems pretty popular nowadays (yes, I’m making fun of you Zombie Apocalypse weirdos). Daydreamed a lot of these activities while lying in bed as my body rotted away. One of the reasons I went to engineering school was because of my fascination with machines and how they work. Drew thousands of my own invention designs as a kid. Didn’t want to just make them but use them, fly them, ride them.
Was planning to start allergy immunotherapy shots on Friday (yesterday), but if I did, who knows what would the reactions be. Not just on Friday, but for the 18+ months I’ll be taking these weekly shots. The weather forecast looked perfect for me, so I said why not? Let’s get this done this week and push the allergy shots back to next week. Always been one to have to live moment by moment, and, when the health SEEMS to be cooperating (can throw a tantrum any second) just have to go for it, push through, and recover later. Just came back from another medical trip to Utah last Monday and was pretty impressed that I could visit The Summers’ farm, ride around in the dust and fields.
The delicious selling point of this specific Motorcycle Safety and Training course is (1) Completion counts as the DMV road test (2) if you don’t pass, you can retake the course for free. The 3-day 15 hour course has to be taken in the same week though, which is why I had to put it off over and over during the spring when the weather was just wreaking random havoc on my health, strength, and waking hours. Been planning to do this course with Heather for close to a year now. Just so happens she’s on intermission from her grad school classes so she had nights free after work to do this course with me.
Day 1: Classroom (Monday night). Had an awesome European dude named Bene teach the class. Worked in groups of 6 through the worksheets, watched a video recapping each section, and discussed the answers as a class. Was a fantastic and non-boring way to learn the rules and laws for riding motorcycles in California. As with any learning, changing up the dynamics so it’s not just a lecture help things to sink in rather than having to memorize the answers. But I still kept falling asleep. 5-hour classes are LONG. Ended the class with a 50-question multiple choice test. Haven’t done one of those in maybe 7 or 8 years. Felt weird.
Got these new riding boots! First pair of shoes I’ve bought in 7 yrs. Last pair? my $11 nikes.
Day 2: Course Riding (Thursday night). Riding coaches for the two nights were Ralph, an older dude, and Eric, probably his mid 20′s. Went from learning how to just start the motorcycle, pushing the motorcycle in neutral gear, to fully riding through turns and braking. Theme of the night (for me)? STALLING. More than anyone else. Stalled maybe 10 times the whole night. Just couldn’t get the hand coordination correct for releasing the clutch and adding throttle from a stop. Did I mention I stalled 10 times or more?
Day 3: Course Riding (Friday night). Set out to master the stop-and-go without stalling. Only ended up stalling twice, and wasn’t luckily wasn’t during the final certification part. Meaning, yes I passed! Everyone was more comfortable the second day. And, with the basics out of the way, got to do some faster fun things and slow technical skills. Going at 1-2 mph doing tight s-shaped u-turns. Emergency braking, swerving. Various types of fast turns and riding through obstacles on the road. But, as Ralph blatantly emphasized when handing us our completion cards, we really only learned to ride a motorcycle semi-proficiently in an empty parking lot. So, much more riding to come to put it all together!
Riding revealed something about myself recently that I need to change. Taking action purposefully. On Day 3, I realized my problem with stalling was not committing enough throttle when leaving a stop. In turns, Coach Eric kept pushing me to commit and throw in more throttle. On stops, he kept emphasizing harder, faster stops. I did end up with the shortest stopping distance during the exam, which was cool.
I was never one to hold back, but after recovering and resting through all of these medication experiments, I somehow lost that drive. Before finding Dr. Gleich and Leiferman in Utah, I lived every day like my last day, in a way. Going all out to do whatever activity I was doing, because in the back of my mind I never knew if I would have the chance to do it again. What kind of a person with allergies and asthma as severe as mine plays trumpet in H.S. marching band…on the grass field? Went to the ER several times during band practice, only to come back the same night and play in the field performances. But now, I have skin. I’m able to sleep. I get to relax. Now it feels like I have something to lose and I’m more protective about it. I’m more hesitant to push 200% like I used to. But we all know what happens when you hesitate, when you don’t have your whole self in the moment. Subpar performance in anything, adds up to a subpar life. That’s not me. So, thanks to this course for waking me up. I’m back!
p.s. Right next to the riding course was Mt. SAC’s RV and motor vehicles repair class. Saw these classics. So awesome.
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- 05.11.13 / 10pm
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Secret to Unlimited Power Forever. Selfless = Endless = Eternal.
Sometimes the most profound realizations are the simplest.
Feel like I made a big step here.
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- 03.26.13 / 8pm
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Metaphorically speaking, of course. Actually, I do exhibit the physical signs of having done a great climb, but not from climbing. Still recovering from a few weeks ago when the house was being repaired and, on top of it, getting a swollen right eye and ear at the Radisson Inn where I was hiding out. Result? For the last 3 weeks, especially the last 2, I’ve been fatigued to the point of getting winded just speaking or putting on a jacket. So in that sense, it’s like I’m expending energy like a climber.
Also, 2 days after the hotel incident (on which day mom had a separate, but even more worrisome ER food poisoning scare), I took another health hit taking my sister and mom to the beach for my sister’s Birthday. Then, the weather followed up with a heat wave that delivered the decisive blow. It really was like my health had fell a lot and have been too exhausted to start making the long climb back up.
I’ll be honest. Last Sunday when I wrote this post, I was feeling very distraught and in a dark place, and I suppose you can tell by the tone and the way I wrote it. My attitude was not right, and watching Elder Bednar’s CES talk, which link I included, turned my mindset around 180 degrees. I felt a million times better, though my physical conditions (my body as well as the environment) didn’t change. The weather did change this past week, cooling down a ton and I immediately experienced a proportional improvement. Though energy levels are basically non-existent and verbally saying “hello” is a a huge feat, I’ve gone from needing to sleep 18 hrs/day during the heat wave to sleeping just 6 hrs/day this week.
So why is this metaphorical climb a sport?
1. Repetition. My health is constantly up and down ever since my whole life. You’d think I’d be used to it by now, and most of the time yes, I just live it without giving it much thought. However, there’s also times like last Sunday when I just got mentally tired of the cycle: recover over weeks and months, lose it in a few days. Rinse. Repeat.
2. Why did I get mentally tired though? My mindset. Even if most of the time I don’t think about it, I’m not always welcoming every day with positive energy. In other words, it’s not a game I hate, but I’d rather not be playing it. That, I suppose, is still negative energy that wears down on a mind and soul. If it’s not positive, it’s negative. When a top athlete loses their love for whichever sport they’re best at, their performance falters, their demeanors change. Especially because it’s repetitious. It can seem monotonous doing the same thing over and over without some driving force.
3. Taking recovery as a sport means I’m looking for ways I can challenge and improve myself through each repetition. And really, no two illnesses and recoveries are the same. I can just hold on and try to make it through, which by itself I’d grow a lot (and have). However, having a ferver for it, attention to detail and how things happen, is often what separates a bench player from a starter. The difference from being along for the ride vs. taking control. There are still tons in the environment, what other people do, that’s random and out of our control. But I’d rather be an active force than along for the ride.
4. So it’s the mindset. We may only have partial control of our bodies and surroundings, and often it doesn’t even feel like we have any control. But we have 100% control over our thoughts, feelings, choices, and actions. Sometimes when people ask me how I’m doing, I’ll say “good” even if I don’t “feel” good. My error with that is I was referring to how I was “feeling” physically. And I rarely feel good physically. But regardless, I’ve felt excitement and happiness even when I’m not physically well. That’s what’s important to refer to about how I’m feeling. That mental health I can control much better than what happens with my health. So really, I can be feeling great and excellent all the time regardless of how the weather is or how my health is.
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- 03.10.13 / 11am
- Health Update Clarification: Minimize use of Steroids. My Treatments are Last Resort
- Losing My Footing On This Parabolic Recovery Climb. No Bueno
Getting by on stream of miracles. Never one to take the easy way out. Would miss out on too much.
We all, for much of our lives, take things for granted. Complex things that happen “naturally” never crosses our minds. For people of normal health, so much is on autopilot you never see how many little miracles are happening constantly as you live.
There are tons of things I take for granted too, and much of which I’m sure I’m not even aware of. However, as with others with physical ailments, I learn everyday how much effort it takes to just live when parts of your loses it’s autopilot and body breaks down. It’s definitely overwhelming when it requires your conscious attention to exist. To take effort to think, to take breaths, to speak, to swallow, to sit, to walk, to sleep.
Difficulties, challenges, and setbacks is an essential part of life. For the lucky who’ve gotten by with ease, when the challenge arise, which they always will, it’s that much harder to deal with. It’s unknown to these people. It’s scary.
I’ve been taught early and often how to live the most challenging parts of life, especially how to not be distracted by them.
Having to do so much to exist, makes me so much more aware of existing. I see things, think about things, and experience things that never occurs to many people.
If you never take the journey, you’ll never see the world, nor know of the world.
P.S. Wonderful CES Broadcast by Elder Bednar tonight. Being so weakened lately that I barely have the strength to speak, this was a welcomed & well-timed lesson
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- 03.04.13 / 12am
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Michael Jordan. The greatest basketball player ever. During his career, maybe you were brain damaged and didn’t recognize history in the making. Or, you just never had the opportunity to watch him play and witness greatness. Never too late to right your wrong. Here’s your quick cheat sheet to what every Jordan fan should know:
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- 02.24.13 / 10pm
There was a time when I would be overly adamant to do as much by myself as possible, despite having a hard time controlling my body and reacting to everything around me. It wasn’t a pride thing but a self worth thing. As well as I cope with an impossible condition, my self confidence definitely took hits in certain areas. I wanted to do what everyone else did to feel more normal, whatever that is.
It took hitting the depths of hopelessness, when I was at my worse, to relinquish that desire and truly accept my unique life as it was, and will be. No two lives are the same. Owning it, as they say. Including owning weakness in certain areas of my life and accepting others help.
Then, came the realization that the need to help can be turned into a positive. Stepping outside myself, I see many who feel a lack of self worth as well, for whatever reason. To allow those people to help me, to do something, achieve something, is a great gift I can give people, even though they’re the ones helping me.
Interesting how that works isn’t it? There are win win situations where both the giver and receiver is better off. But it took a less selfish state of mind for me to finally see that.
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- 01.04.13 / 12pm
Following the previous post about hunkering down and trying to recover before next week’s Utah Medical Trip, actually had about a day of skin doing much better.
That only works well when, ideally, all else being equal. Maintaining the status quo. But life is never like that.
Right now I’m experiencing a nervous system allergic reaction. We’ve had a water leak in our house. Plumbers and repairmen came this afternoon to find and repair the leak. As I spoke to them and watched them work in the garage, where the leak was, I started getting fatigued pretty fast. Having removed myself to my office on the other side of the house, thought I’d be alright.
Tough luck. As the plumbers and repairmen tore away at the dry wall and insulation, I guess the dust and mold were released into the air. On the other side of the house, I didn’t feel anything drastic. Yet, as about an hour passes by, I occasionally felt weaker and weaker. Just thought I needed to rest. Then I realized I was nauseous, head felt tight and chest felt tight. Trying to get up, I started feeling like vomiting, though not actually doing so.
Quickly got my mask and got out. Now, I’m sitting in my car in front of our house. Body and limbs still feel buzzed and numb, so didn’t think I should drive anywhere. Shoulders have cramped up and still have that vomiting feel down in my throat.
In the past I’d try to stick it out. Go back in, seal off my room, and hope for the best. But that was usually the dumb move. There’ll still be particles in the air that’ll get in. My health will just get worn down throughout the night. As with trading, smart move is cutting losses. Accruing more losses will just take that much longer and more work to get back to even. And I got the Utah trip coming up, which’ll take a lot out if me still.
Will likely head to the hotel the next few days as the got to tear out a whole section of the master bathroom to fix this thing.
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- 01.03.13 / 6pm
In a universe governed by moderation and balancing forces, occurrences that quickly become one way extremes are unnatural. Things need time to settle. And thus was my parabolic improvements since starting Gastrocrom a few months ago. It was seemingly miraculous to be able to eat human food several times a day, everyday of the week. Haven’t done that in years. Even more unbelievable was binging such and not needing to put on any topical ointments, and able to reduce the cyclosporine dose.
The first slip came 2 weekends ago. There was incense at an event I attended that caused an obvious nervous system allergic reaction. Though I felt mostly ok after, apparently some loosening of my foundation had been done. I felt more sensitive to foods again, though I continued to eat chicken and rice almost daily. When visiting friends’ houses with pets, I flared up a bit afterwards. In addition to all of this, winter finally feels like winter so the heater has been blasting and drying my already irritated skin.
It’s occurred to me that taking less cyclosporine might’ve also made me more sensitive to all these factors, or at least set the stage so. Though I was doing great on reduced cyclosporine for over 6 weeks, I also wonder if I had just built up a wealthy amount of health, of which I’ve been spending heavily by eating food daily.
Just thoughts. Not sure which of these or done combination of these is causing the rougher skin and mini flare ups. Attempting to get back to the steady state I’ve been at most of the fall- clear skin, no need for topical ointments. Trying to do this by going back on more Elecare, less food. Progress is slow. Hope to be much better when I visit the doctors in Utah on 1/10/13 & 1/11/13.
I should note that friends who haven’t seen me since the summer say I’m looking the best I’ve ever been. They’re shocked when I tell them this is the worst I’ve been in a few weeks.