- June 16, 2014 - I started using crutches full time because, as usual, this is a surreal disease that presents itself in unusual ways. In this case I was finishing up happy hour at Kelly's Logan House and while I was getting out of my seat at the bar another patron rushed in to get the seat almost knocking me over. He was much shorter and smaller than me. But IBM is taking away some major muscles in my case and it's not obvious. I told him to give me a second, disdainfully. He felt I was overreacting. It was not a cool incident. I discussed this with my sister Deanna and she said when one is looking at me it's not obvious I'm sick. I'm still big and tall. So people can't parse the weakness. Since walking in general, going up/down slopes and going over rough terrain was getting tougher and tougher we both thought it was time to just get over my ego and use the crutches. My sister said at the very least it would be a visual cue to everyone something is wrong.
BOY WAS SHE RIGHT! People give me space. I can use full strides and I go over most terrain like it's flat. However, slopes, especially going down them, is still very risky but they make a difference there too. I used them during the USA's knockout round game at a bar. The bar was 5 deep with people. When I got up to use the restroom they cleared out of the way. Then I started walking through the crowd banging the crutches on the ground yelling "Watch your toes!!!" They all laughed and moved. People get doors for me and even help me put my crutches out of the way and get them when I'm done. The coolest thing? Servers have been helping me get my to-go food to my car. A win! I did have to learn that a backpack is now a permanent accessory to my fashion ensembles. I can't hand carry anything any more.
A funny side note: When I am seen using the crutches for the first time by friends they always ask me what I did to myself. When my friends take my crutches to goof around or try them out folks ask if they're alright and can they do anything for them. WTF? ;-)
- June 23, 2014 - On this wonderful day in history I got to experience surgery, of any kind, for the first time in my life. It was a bicep biopsy. Dr. Corse and her team made the overall situation as smooth, relaxing, comfortable and quick as possible. I got to Johns Hopkins at the requested time of 7am and processed in. They ended up taking me first, ahead of time and got me out about an hour earlier than was planned! Awesome. They did do my right arm. Whew. The sling it was in wasn't for anything more than a reminder to not use the arm for lifting. It was off in about 3 days and I was back in action. As I'm typing this right now it's about all healed up. The bonus?
THIS IS THE BIGGEST MY BICEP HAS BEEN IN 3 YEARS! Boom. Watch out for the gun show ladies. Oh, they took 3 samples. One for the pathological diagnosis, one to freeze and one for research. As far as I understand this. Dr. Corse did say when she got into the arm the muscle definitely looked dead/dying/unhealthy and it was being replaced by fat and sinewy tissue. I vote for not doing a biopsy ever again. FYI.
- June 28, 2014 - Being the man-of-action that I am I decided to go ahead and do a deep sea fishing trip 5 days after surgery on an arm. Boom! We left the slip at 5am, blasted full speed 40 miles out and then proceeded to troll for 7 hours. It was another 3 hours at full speed to get back home. Wow! First, the guys put me in "time out" for 3 hours. They tricked me into sitting down in the fighting chair at the back of the boat while we were leaving the port. All of a sudden the front of the boat is in the air, my forehead is almost in the water as the engines went full throttle! I thought it was going to be death by bouncing. With my IBM I couldn't even begin to try to get up into the salon. No one could come get me. My weak hands were useless and there was no seatbelt. I held on for dear life by wedging my legs between the end of the boat and the chair. While using my forefinger/thumb strength to "hold" me in it. Ack! After 45 minutes I figured out that I wasn't going to be flipped out, relaxed and then kind of went into a trance watching the wake and rooster tail and boats behind us fanning out. It was a very cool experience.
As for fishing we spent 7 hours in 6-8 foot waves that were relentless. I just happened to be in the seat when a 40", 18lb dolphinfish (Mahi Mahi) hit. My friend John guided the rod during the catch. I did the reeling. It was not as hard as I thought it would be but I did end up having to use both hands. The fish was gorgeous. More importantly? It was delicious. My cousin Chad cooked it 2 ways: Thai inspired "ceviche" and grilled steaks over dirty rice. The freshest fish I've ever eaten and the coolest fish I've ever caught!
The best part of the trip was that everyone had to walk around like me for 13 hours! Using their arms, holding on to things and losing their legs. Hahaha! Don't even ask me about using the head…took me twenty minutes just to open my fly……..
I'm sitting down holding the tail. I couldn't hold the fish at all. The first mate is displaying it
and my buddy John, who handled the rod for me, is in the background.
- July 5, 2014 - I went on another big adventure the very next weekend, 4th of July weekend. It was to Pittsburgh to watch the Pirates at PNC park. The nautical theme is coincidental by the way. I've always wanted to see that park and we figured that we should do it this summer. While I can still do most things with nothing more than crutches. Boy am I glad we did. Even with handicap parking we were 2.5 blocks from the stadium. Think that was the tough part? No. Once you cross the threshold of any stadium the journey just begins. You've gotta cover ground to get to your section. Then cover more ground to get to your seat. Then reverse! Even though I'm faster in crutches I'm still 50% slower than normal walkers. Plus it's grueling. Not in a fitness sense, but in the sense that my legs just slowly want to quit working. My shoulders, which are fine, really are quite happy getting the workout in. Plus you can't really use the crutches on stadium stairs. There's something weird about their height/slope ratio that makes me uncomfortable using them. I just did what I do at home and take my time using the hand rail. Overall it was a great first day, but we learned a lot.
So… ON DAY 2 I BROKE OUT THE WHEELCHAIR for the first time. It's the first time I've ever had to use one. For any reason. My friend Tony put in a yeomen's (pun intended) effort pushing me all over Pittsburgh as we explored the city. And then all over the ballpark as we found our seats and did some souvenir shopping. He and his girlfriend both agreed that the chair made a HUGE DIFFERENCE in the day. Even with all of the pushing in the hot sun up and down various slopes and hills. I'm happy we used it. Smart decision.
The downside is that, for me, it was mentally draining. I had to get used to being below the crowd under another person's crowd maneuvering control. I had to trust him a lot. I usually stand above the crowd and can see moves to negotiate the insanity 3 or 4 people ahead. Plus oncoming collision possibilities. In this case everything seemed like it was going to be a collision. Wow! Also, people lack self awareness. Amazing how many folks cut right in front of us looking at the tops of buildings or whatever. I imagine it's going to take me 4 more times in that thing before I get used to it. I would vote against ever having to get used to something like this. Find something better to get used to.
- July 14, 2014 - Today I'm starting my diet. I can't exercise until the addition is put on the house and everything is on the same floor. Exercise or go to the bathroom is my daily dilemma. If I over do it my muscles that are currently doing jobs they weren't designed to do, because the real ones are gone, get really wiped out. It's like double-duty. But I can start dieting with no issues. So I will, now that I'm mentally ready for that. It's the Accu Weight-Loss "Bead Diet". My chiropractor client offers it and we've done it successfully in the past. It requires no exercise but is a very aggressive diet. I'll let you know more if you contact me directly. Anyway, I'm hoping to go from my current 285lb down to 250lb before Christmas. That's a good weight for me. After that I'll start chipping away to hit 225lb.
Thanks for reading. I hope this helps anyone that has or was just diagnosed with IBM to see some timeline action like this. Plus it helps me to just get it out of my mind. Seeya soon!
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