There’s been steadily growing interest in the project this year, and it has quite a long history already so it’s a good time to give some background on it’s genesis.
I’m one of the lucky ones to be a beta tester for Pinoccio and just got my scouts yesterday, wooo! I’ve been giddily playing with them and am madly impressed, this isn’t just about the promise of what’s possible anymore, it’s real :)
Here’s some pics of the unboxing and a little bit of what I’ve learned so far…
Last week I was diagnosed with Crohns, which came as a huge relief after two months of going downhill with a variety of unknown health issues. My deepest thanks to Dr. Yun and the incredible staff of Northwestern Memorial Hospital in Chicago, they were able to zero in on a diagnosis quickly, verify it, and start treating the immediate and long-term problems, astoundingly gracious and intelligent care.
I have one to two months of both recovery from the damage done, and finding and adjusting to a new balance in living with this, it will take a while to get back to normal but all signs are that that is a realistic expectation with time and patience.
Now, if you’d like to hear more I kept a bit of a journal of last week, taking raw notes at the times I felt good enough to do so. I’ve tried not to edit it much so and I’m sharing a lot of not pleasant detail here as a heads up:
It’s been a month since I posted about my trials and tribulations of the last part of 2012, and I wanted to update everyone on what’s been going on since then.
The first week after the surgery went well, I was able to stop all pills, and the pain was mostly discomfort. Then the second week something seemingly unrelated happened, my mouth started getting sore in general, and then after a few days it developed into actual white+red swollen sores both on my tongue and in the back of my mouth. They became painful enough I couldn’t eat or talk, so I went back to the Doc on a Friday. They had no idea what they were but did a culture anyway. I had been off everything for over a week so it shouldn’t have been a reaction to anything, and the Doc said either I’m just unlucky or it could be immune system related. Gave me some bactrim and painkillers and sent me home.
They called back Monday and said they found strep in the culture and switched me to amoxicillin, I took that the full 10 days, and at first I thought it was helping but then I noticed more sores were appearing slowly, just in less irritating places, so it didn’t seem like they were actually strep. During that week I also met with an Immunologist, described everything, did some blood tests, and the results all came in last Thursday: everything looks within expected ranges, my immune system isn’t jumping out as the cause of anything big.
While I was waiting for the results last week, things started going downhill. I noticed I was regularly running a fever of 100 to 101, I got a few more sores, and the area where the abscess is still draining became increasingly sensitive and painful. For a few hours after every bowel movement I’m nearly useless from the discomfort, even with painkillers. I tied to get in to see the surgeon who’s been treating the abscess but he was out Friday/Monday, so I took painkillers and coped over the weekend. After he examined me yesterday he explained that the area down there has become “ulcerated”, which I guess is a complication that happens more often in elderly or after repeat issues. He told me to use topical gel to dull the pain, but that it will just take a few weeks for my body to heal up.
Unfortunately between Sunday/Monday, the number of mouth sores increased significantly also, to the point now of there’s a dozen of them and I’m unable to move my tongue, swallow, or talk at all. I called the ENT (Ear Nose Throat) department and the first available time to see a specialist is this Friday. I explained how dire it was and they said just go to a normal doc and get some painkillers to get me by until then (which I did). Since we had a snowstorm last night, some appointments got cancelled this morning so they just called and are able to get me in this afternoon.
Between the mouth pain, inability to eat, being feverish, very sensitive bowel movements, various drugs to deal with the pain, and the fact I’ve been on my back for almost 6 weeks now, I’ve had some very very low moments the last few days and am definitely not myself. Thankfully I have a wonderful wife, family, and friends who are helping me in every way they can, and I’m determined to get to the bottom of this and get better.
Anyway, I’m online as much as I can every day, able to do some email/chat, so say hi when you see me :)
Tilt team 2013
I want to memorialize this as a reminder to myself to make 2013 and beyond better, to be more careful, patient, and most importantly: balanced.
This month started out pretty intensely busy, in the first two weeks I was only home three days, and there was a seemingly inordinate amount of stress from work and home life around the many unknowns for next year, it took a bigger toll on me than I was prepared for.
Just over two weeks ago I had a rash on my bum that got to the point of being too painful to walk around or sit comfortably and just a constant irritation. I haven’t been to a doctor (outside of a few stitches) since I had pneumonia over 10 years ago, but I eventually gave in and went to see one on Tuesday the 18th. Seemed pretty straight forward, he gave me some meds and sent me home.
It was an uncomfortable week mostly on my back, by Friday the rash seemed to have cleared up but there was a growing pain still, deeper and stronger. I woke Saturday with it having become unbearable and decided to go back and see what else was wrong, and being a weekend I had to go to the ER / “Convenient Care”. They saw that I was in a lot of pain and running a mild fever (which had been pretty constant all week) and couldn’t see any obvious source, so they ran a full gamut of tests, including X-Ray and CT (requiring an IV for the dye). The (younger) doc on call still couldn’t find a source, so sent me home with some more meds and painkillers, telling me to see a specialist as soon as I could.
Unfortunately the timing was really bad, Sunday, Christmas Eve, and Christmas Day came and went and things continued to go downhill. I don’t even remember much from those days :( The first day the “Internal Medicine” office was back was Wednesday and I called first thing that AM, they couldn’t get me in to see the specialist until the end of January! I kept calling and explaining that this was urgent, the history, talking to different nurses, all the while I was crashing pretty hard with pain. I finally gave up mid-afternoon and went to the ER, a 30 minute drive of hell, to be followed by a couple hours of more hell. They did more tests, examinations, even an MRI (in a machine I swear is from the cold war era). And they sent me home again, a new set of meds and painkillers, no idea of the source and suggestion to see a specialist.
I don’t remember Thursday at all, but by Friday I was calling again and one of the nurses decided that if I can’t see a specialist that I should see someone, and got me an appointment that afternoon with one of the general MDs. I was happy to do anything at that point, but still nervous from my last two inconclusive experiences with the healthcare system. He was older and after just hearing a tiny bit of the history he stopped me and wanted to start with a normal checkup exam. We only made it partway through, he stopped instantly when he got to the source of the pain and told me to hold on while he called a surgeon over: I had a large abscess. I stood uncomfortably waiting, the surgeon arrived and with only a glance, put his hand reassuringly on my shoulder and so warmly said that he would help, and wanted to immediately admit me and that it would require surgery at this point to remove it.
I was very nervous since this was my first time going through anything like this, but it was the first sign of actual progress and remedy since the start and that felt wonderful at the same time. It took hours to get prep’d, loaded me up with antibiotics and tubes and stuff, and then it was finally time. I was curious what “going under” would be like, I remember watching the anesthesiologist start injecting it into the IV and that was it, don’t even remember him finishing. I was also worried that I’d awake in general pain yet, but when I came out of it I was gleefully chatty, I asked the nurse probably 50 questions in 10 minutes while she was finishing paperwork and checking on things :)
They had scheduled to keep me in until today, but the surgeon came in and checked everything out mid-day and released me early, always better to recover at home! I have a “modern” drain that will be in place for three weeks yet and some pills to give my systems a constant advantage. Every day has been an improvement, and I’ve been able to sleep solid 3-4 hour chunks (was lucky to get just one hour at a time since it started). I’m starting to feel like myself again, making jokes and laughing, able to think even.
I haven’t reflected much on what I could have done differently, but one thing resonated with me: the older more experienced doc that saw it immediately said that the younger ER one was depending on the machines and data to tell them and they didn’t use their eyes and intuition. That’s something that applies everywhere nowadays and is something I often fail at: don’t always trust the technology, use your own senses too.
The best explanation for the abscess/infection was that my immune system was so suppressed from the travel/stress that it got a foothold and grew. I’m going to focus a lot of my energy at finding some healthier ways to live and work in 2013, to find a better balance, and I suspect when I do I’ll be even more productive than 2012.
Thanks to my loving and supportive wife, kids, and friends, who helped me get through some tough times when I was not the most pleasant to be around, love you all!
Mobile apps are wonderful things once you are actually in them. They are like a beautiful island - hard to get to but once you are there it’s a fantastic experience. I spend a lot of time in Kik, Twitter, Flipboard, Gmail, Tumblr and time spent in Apps is beginning to challenge TV.Yet apps…
#4, that’s exactly what we’re doing and enabling right now with Singly :)
This week I had the amazing opportunity to speak at TEDx Orange Coast about one of my deep rooted passions - the participation culture, chaords and the principles which allow people from all around the world to connect, share, collaborate and contribute to make things better.
Mountainous (Taken with Instagram)