Surprising Numbers Stepping on the Scale After a Few Years

2019-06-14 jbustillos weigh-in

Surprising Numbers Stepping on the Scale After a Few Years

In my many travels yesterday, I picked up a few things that hadn’t survived the move last summer or the move from Florida. One of the items was a weight-scale. Tracking my weight had been important following my illness in 2012-2014, but it just hadn’t registered these past few years. So I picked one up yesterday, and stepped on the scale this morning.

Last time I recorded my weight was back in Florida some time in 2016. At the time I clocked in at 192.2 lbs. with a target goal of 172.8 lbs. During my illness, in 2012, thanks to the pain-killers I was on also killing my ability to process food, I dropped all the way down to 154 lbs. I loved being more sinewy with little to no beer-gut, but losing all of the muscle-mass and strength in my legs to the point where I couldn’t support my own weight to stand up or walk was just a bit too far to go just to look good. So, imagine my surprise when today’s morning weigh-in registered at 157.3 lbs. Wow. I didn’t expect that.

2019-06-14 jbustillos weigh-in

2019-06-14 jbustillos weigh-in

I should probably get on setting up testing with a local physician to keep an eye on my A1C and other health measures. Speaking of health, I also got info yesterday about the location of the work-out rooms in my condo-complex now that I’m not having to keep up for kindergarteners every day and the weather gets above 100° before 8 AM. Having lost my health, I know how precious it can be and need to keep an active eye on things.

Year3-Week7: Course Adjustments

2018-09-24 STEAMLab_wk07 teacher-training

Year3-Week7: Course Adjustments

2018-09-24 STEAMLab_wk07 teacher-training

2018-09-24 STEAMLab_wk07 teacher-training

I’ve gone on record saying that you make (teaching) plans so that you can pivot and change them based on the circumstances. This was that kind of week. For the past couple weeks I had been running the ragged edge trying to roll out the three thematic curriculum programs for my six grade levels and getting this year’s robotics team up and running. For the robot students, I was getting to school an hour early Monday through Thursday so that they could do their robot builds and begin programming (which they have excelled in!), then staying late to manage the 28 WeDo robot kits and then continuing to work at home on over-due paperwork, calendars and things still needing to get done following my recent move, usually past midnight.

Monday evening my body decided that it had had enough with this schedule and pace and made it impossible for me to be away from the bathroom (to put it delicately). I don’t know if it was bug I caught from one of my sniffling students or something I ate but I was out of commission for two days, deadlines be damned. So, whatever it was that I was going to do this week… I was going to say, “went right in the toilet,” but that’s not a visual I want to think about right now. So, just like that, Tuesday’s and Wednesday’s classes are given “Math apps/games” to play in my absence and whatever I had hope to do “evaporated.” Damn. Luckily I was back together enough on Thursday to keep the WeDo robots program on track and begin the four-week cycle with new fifth and fourth grade classes. Small victories.

So, here we are only seven weeks into the new school year and the pressure (mostly self-inflicted) has been enough that my own body betrayed me. Course correction time… or something. As much as I hate the paperwork, the objective-alignments, etc., these required steps push me to be a better educator. I was in an after-school meeting a couple weeks ago where every licensed educator was present learning and role-playing how to better assess the reading levels of our students. I looked around the room at all of these highly educated, mostly veteran educators, breaking things down to the most basic elements of the learning process. I was impressed at the expense being spent by administration to fund this meeting/training and how the general public has no idea of the extent of the effort these professionals are putting into bettering their practice teaching this community of mostly disadvantaged learners. That moment encapsulated the effort being spent to address the learning needs of this community.

Things are nowhere close to where i want them to be as far as my plans for the year, and I’m definitely not physically running on all cylinders, but I love these kids and that’s enough to spend another weekend writing lesson plans and alignment-schemes.

The Road Back

Students this week have been reflecting on Dr. Pausch’s Last Lecture and this was one of my responses to a student’s reflection:

Thanks so much for sharing your reflections on the book and the video this week. Alas, if we live long enough to notice that (A) we’re getting older and, (B) we’re still here, then, hopefully, we learn things that we can share with others. The difficult part is recognizing that it’s often not the message we have to share that isn’t heard, it’s that they’re not ready to hear it. Before I got sick I was busy 24/7 just doing the thing, doing everything that I could, but I was unaware of the journey and it took two-years of my life, coming back to just recognize the road. Living deliberately comes from that time on my back, asleep and living only in my head, if one gets a chance to come back, like I did, then that’s the gift: to see both the journey and the destination and enjoy both.

Thinking about Hands…

I recently started or restarted sketching or doodling, now on my iPad. It was something that I did a lot of back in the pre-computer days. Look at any book I owned in those days and you’ll find my doodles and notes bleeding across the margins. Funny that someone who drew long before I was comfortable writing would have mostly abandoned the art when I switched to computers in the 1980s… I’m definitely out of practice…

This past Sunday I was sitting on a park bench after doing three laps around Lake Lilly in Maitland and my feet were not happy with me and I was wondering what to draw. I had this beautiful vista of this lake and the birds and the trees, but my thoughts were much more inward. I wanted to remember, despite my achy feet, how far I’d come in the past year… this time last year I had been losing strength in my hands to the point where I found it difficult to sign my name (not that anyone would notice the difference in my pathetic signature). I was also growing more and more frustrated that I was losing accuracy in my typing. I had bought a couple different keyboards to use with my iPad and had to reject them because anything less than a full-size keyboard and I couldn’t seem to hit anything with my left or right pinky finger. It was so frustrating and scary to feel like I might lose my ability to communicate via my writing. I was losing feeling in my fingers and after seeing how my legs so quickly wasted away to nothing I didn’t know what I’d do if I lost my hands like I’d up to that point lost my feet and legs.

I tried to adjust and started gripping my eating and writing utensils in the same close-fisted stabbing posture because I could use my arm strength to help my failing fingers. I know it scared those around me to see me this way, but I couldn’t think about it much beyond just trying to adapt and keep moving. I did find out that the way I was leaning on my elbows was probably contributing to causing numbness in my hands. Ack, but I leaned so much because with so little padding on my legs and rear I found it difficult to sit for any length of time (not that standing was at all an option…). Grhh. Not a fun time.

I still have some slight numbness in my right pinky finger, which might be permanent, but as I started to get better over the course of the past year, my hands also have returned to something close to their pre-illness functioning. Just like the rest of my body, I don’t know if I’ll ever fully get back to the way it used to be. All the more reason to remember the difficulty I’ve been through and celebrate what I’ve regained so far. Thus, the return to sketching means more to me than something to do during idle mental-cycles. After what I’ve been through I’m trying to figure out the things that are important to me and reclaiming them.

Up to the point when my body began to fail me and I started to lose every day abilities, I had so much that I gave no thought to. This time last year I had lost my ability to walk or to drive my car, to go up and down the stairs of my townhouse, to even get something to eat from the freezer to the microwave and I was beginning to notice the numbness spreading to my hands. As the new year began I started to see some signs that the treatments might be working, but I had lost so much at this point that I didn’t want to make assumptions about when it would end or how long it would take. I don’t if I would have made it if Tricia and her family hadn’t taken me in, but the holidays 2012 were still a very dark time for me when I spent as much time as possible either sleeping or doing something like soaking in a hot bath to escape the pain. It’s all the more important for me to remember what I’ve been through, what I almost lost and reclaim what is truly important to me with both hands. Happy Holidays.

Pacing Myself


I’m a lot better than I was even just a couple months ago. I’ve retired the walker to storage in the garage and I’m focusing on not leaning on the cane when I walk. When I wake in the morning I take a quick pain inventory and except for the bottom of my feet still suffering from neuropathy my legs feel really close to normal. But my feet not giving my legs full surface/balance/sensory feedback, so I’m not back to normal and still tire easily. Yesterday I walked my local Costco and Best Buy using my cane and not using an electric cart to ride or even regular cart to lean on. That wasn’t too bad. But when I stopped at a local sporting goods place to try on some five-finger shoes I really had to use my leg muscles to get my feet and all five toes into the correct position. The very helpful sales guy, Mike, said that getting the shoes on the first time was always the toughest. He wasn’t kidding. I almost gave up when it seemed impossible for me to get my little toe AND my big toes in their proper alignments at the same time. But like I said I muscled my way into them and was surprised at how comfortable they were, well, the left one was and the right one was a bit too tight. But after struggling to get them on I wore them out of the store and the rest of the evening.

When I woke up this morning my thighs felt like I’d gone up and down my stairs a half dozen times and the bottom of my feet felt just a bit hypersensitive. I decided against climbing up on a ladder and installing my ceiling fan today because I knew that would probably require more muscling than I had in reserve. Damn. I guess I over did it a bit yesterday. What was it my physical therapist brother said, you can either go further or go farther but you can’t do both at the same time and expect improvements. Yeah, I guess yesterday I do both and I’m really feeling it now. Today I’m doing neither.

Between here and there I have to figure out how to push myself so that I improve but I have to stay aware that I’m still not all there and going too hard will result in days of recovery. One step forward/two steps back. No thank you. I have to pace myself. Damn. Never been my strong suit. How do you stay aware of your pacing when all your energy is needed to focus on just getting the damn job done? I guess I’ll figure that out. Pacing, who da thunk? Right now I just need to get off my feet, curl up on my memory-foam couch and let the buzz of the fans help me drift off so that my muscles can be restored. It isn’t like the ceiling fan isn’t going to be there tomorrow to be installed. Having two ales at lunch probably didn’t help, er, hurt. Zzzz.

Treatments Begin

Day One Done

The IV has been unplugged, a little sock put on my hand to protect it over-night and the nurse has left for the day. Well, I survived that one with a lot of hand holding by Tricia and support from her family (and all my friends reading this and sending your well-wishes). So far no side effects, no additional discomfort and not much else to report. It took all day, almost, for the IV drip to do its thing. I have three more days of this, laying in bed with a tube delivering medicine attached to my hand, getting my temperature & blood pressure taken every hour and adjustments to the dosage along the way. This is way better than leeches or back surgery. Day one done, three more to go.

Day Two Done

“Second verse, same as the first.” Nothing new to report after my second treatment session. At 1 pm I decided to watch the Apple Event and thought that it’d be better to view with multiple screens, which meant sitting at my computer in the home office. That was probably a mistake, to sit for that long on an old wooden chair with a make-shift pad. Yeah. Not smart on my part. Tricia brought my nice office chair this evening, but for today it was the wooden chair. Ouch. But no side-effects or additional discomfort to report. As for reversing the nerve damage, nothing to report there either. I might experience some beginning signs of relief in another 24- to 48-hours, but there’s no telling. I have two more sessions to go and remain hopeful that I might see signs of improvement over the weekend. Thinking positive thoughts.

Day Three & Four Done: It’s In the Bag

So… on Thursday and Friday my nurse decided to switch me from the drip-pole to a small portable pump, making it much easier to move about with my walker. One problem that popped up was my blood-pressure was a bit elevated, so the nurse had to back down the flow several times and on Friday was a bit concerned as to why my blood pressure was up on both days. Well, part of the reason might have been that I tried to get work done on both days, taking an online meeting for over an hour on Thursday and spending most of Friday morning in my office-chair finishing up the week’s grading and tracking student projects and emails. I have a program on my iPhone called Phocus ( that follows the philosophy of breaking up ones work process into 25-minutes sessions of concentrated work with five-minute stand-up breaks in between. Previously, especially when working in the EMDT office, I’ve been pretty strict about getting up every 25-minutes and taking a little walk/bathroom break/etc. But more recently I’ve been finding that I can do two 25-minute sessions and then I need to go lie down for a bit, usually longer than the five-minutes promoted by the program (as in like over 25-minutes). It’s frustrating, but it was pretty much the only way to get my blood-pressure down on Thursday and Friday. I just can’t seem to be able to sit for very long without needing long breaks. So, I take my iPad and take long breaks.

By the end of Friday there were no noticeable improvements in my leg strength or overall pain. I’m also having to fight digestion issues, due to the pain meds, and that’s adding to my discomfort. I was really hoping to see some improvement, but not so much. Things may change over the weekend, we’ll see. I had to remind myself that my treatment entails sending medicine into my bloodstream from the back of my hand or arm, where it travels throughout my whole system and hopefully targets whatever is going wrong with the systems in my legs and feet. There’s something amazing to me about the notion of putting fluids in one part of the body and finding results in the opposite end. Obviously it’s not perfect, it’s not StarTrek where the doctor runs a handheld scanner, then administers a hypo-spray to the arm that instantaneously fixes whatever is going wrong. But, in the end, I’ve found that the real healing begins with the compassion and care of the health-professionals one works with. And I’ve been lucky through-out my experiences, most recently with Nurse Debbie, to have a good soul to have worked with this past week. I know that she’s hoping the best comes from our efforts. Here’s to continue to hope and look for the answer to this problem.