Bob Goff’s Living Room

Several months ago, Bob Goff posted on Instagram and on Twitter that he was hosting a little event in San Diego. It was going to be called “Living Room” and only 50 spots would be available.

There weren’t a lot of details, just an invitation.

I’ve learned over the past couple of years that these events without a lot of specifics often turn into the best times. When we are able to give up control and just open up our hearts and minds to the possibilities, amazing things happen.

First, Bob and Sweet Maria are probably two of the most awesome hosts you could ever hope to meet.

Bob’s team of “women in black / men in black” did an amazing job keeping us all together and all on schedule.

Bob’s friends that he invited to speak to us and share their hearts with us were absolutely fantastic.

Most of what was discussed will not be shared. Bob had invited us all into his home and that made us family and there are things you share with family that are special and you keep private.

I will share a few key takeaways for me:

  • Instead of asking people superficial questions, get real with the people in your life. Ask them tough questions:
    What do you put your hope in?
    What are you passionate about?
    What are your dreams and how can I help you get there?
  • The world needs to hear our stories, especially the ones that show our broken-ness. Often times, we feel like we can only share with the world our super hero capes and all the good spots in our lives, but what really can draw people both closer to us and closer to Christ is seeing our rough spots. People need equals in their lives to walk with them.
  • We hold too tightly to who we are and where we are at in life. Until we are willing to let go, we can’t move forward and be the person that God wants us to be.

I thankfully was able to take a full week of work, which gave me time in San Diego both before and after the event. I did a lot of writing after the event to really think about what fears are holding me back from being who I want to be, and how I want to move forward with my life.

Bob is having another Living Room event in May in Disneyland. Part of me wishes I could go and be part of both!

My favorite podcasts

podcasts-are-awesomeI mentioned that I recently installed the Pocket Casts app, which means that I’ve been listening to a lot of podcasts again.

I love listening to podcasts, and my mix is fairly eclectic.

These are my current favorites:

  • The Moth Podcast – The Moth is like the memoir version of TED. People go on stage and tell stories about their lives. Those stories are recorded and then The Moth Podcast plays some of the best. Many of these stories quite literally make me laugh out loud.
  • Startup by Gimlet Media – I’m somewhat torn about including this on the list, but I’m super hopeful for the future. I *loved* Season 1, but Season 2 was a big disappointment. One of the big difference between Season 1 & Season 2 was that Season 1 was almost real-time where Season 2 was kind of like a post-mortem talking about things that had happened a year or more earlier.
  • This American Life – “From WBEZ in Chicago, it’s This American Life.” If you like listening to random stories about things happening in the U.S. (and sometimes around the world) This American Life is great.
  • Action Army Podcast – A relatively new podcast from my friend Jason Zook (also occasionally includes his partner Caroline Kelso). He talks about his entrepreneurial experience and gives advice on how his listeners can take action in their own lives — whether it’s personal or business.
  • Serial – It’s hard to catch lightning in a bottle twice. Serial Season 1 was awesome. Serial Season 2 is good, but not great. Both seasons are definitely worth a listen.

Podcast review: A great way to listen to podcasts on Android

Years ago, I used to listen to a lot of podcasts. I would mostly listen to them at work, and I used iTunes.

One of the apps on the “do not install” list at my current job is iTunes, and I’ve struggled to find a podcast app that I really liked — especially one that worked well on Android.

About six months ago, I saw someone mention a podcast app called Pocket Casts. They mentioned it wasn’t free, but it was totally worth paying the $3.99.

There were a handful of podcasts that I had started listening to again (Serial, some of the stuff from Gimlet Media, and a few others), so I decided it was worth it to at least try.

I’m super happy I tried it out. I love this app. Searching for podcasts you know about is super easy, and it also has a great “discovery engine” to find podcasts that you might be interested in watching.

The app makes queuing up a playlist super smooth, which makes it super easy to set up an hour or two of episodes.

When I grow up, I want to be Aretha Franklin

A few days ago, a video of Aretha Franklin went viral. It’s pretty awesome.

Carole King was being honored with a Kennedy Center Award and Aretha Franklin came to perform “Natural Woman”, which was co-written by Carole King.

The performance is pretty mind-blowing. compared to her younger years, you could say that Aretha may have lost some of the power in her voice, but she’s lost none of the ability to command a stage and bring an audience to its feet.

Goodbye 2015, Hello 2016

quote_20160101For the past couple of days, I’ve been thinking about writing this post but it’s been tricky. When I think about 2015, the best way to describe how I feel about it is “meh”.

There were some really cool things that happened, but also some kind of dark months. There were goals accomplished, but also many goals that didn’t get the attention they deserved and stagnated.

Like I said, a bit “meh”.

I don’t like to dwell on the negative, so let’s focus on the positive:

  • I was able to continue to help serving at my church. Being on the media team allows me to use my skills for good. Plus, we put on a pretty cool Veterans’ Day event, and I was also able to help with some social media consulting.
  • I received a promotion at work that has been challenging and an interesting learning experience.
  • Speaking of work, we did some amazing things for our clients in 2015.
  • I launched a new blog, which gives me a place to put all my thoughts about genealogy and family history.
  • I had huge momentum on a special project I’m working on.
  • I finally got some answers on some health stuff that’s been impacting my life.

What I’m looking forward to in 2016:

  • “Working” a bit less and focusing on me a bit more. While I love my “day job”, it took up way too much of my time and energy in 2015. I’m hoping to find some balance between doing amazing things in a 40 hour work week and leaving more time for things that will move me forward.
  • Launching my new special project.
  • Spending time in with Bob Goff and friends in March.
  • Speaking at the Nonprofit Technology Conference in March.
  • Hopefully spending time with the misfits in May.
  • Getting my application submitted for the Daughters of the American Revolution.
  • Continuing to serve at my church and find ways to serve more in the community.

I hope everyone has a wonderful start to 2016.

 

 

The Things I Deal With

A good friend (this one’s for you Deb!) recently pointed out that it’s been awhile (and probably on an older blog) since I really explained what’s wrong with my health. So, this is going to be a fairly lengthy explanation of what’s happening inside my body. (Note: I don’t get too detailed in this post, but if medical issues make you squeamish, you might want to avoid reading.)

I was born with 4 different genetic mutations.

  1. Brachydactyly type D … also known has hammerhead thumb … also known as clubbed thumb. Basically both thumbs are short and wide. To be honest, this doesn’t impact my life all that much other than longer “nails” look really weird, I can’t be part of your jamberry club, and I will never wear gels, acrylics, etc.
  2. Autosomal bilateral polydactyly. In non-scientific terms, I was born with six fingers on each hand and six toes on each foot. They dealt with the finger issues when I was born, but they decided to wait until I was 5 to do surgery on my feet. The biggest challenge I deal with ongoing due to this mutation is my very wide feet. The spot on my hand where the extra finger used to be is also very sensitive, and I have to be careful about getting it irritated.
  3. Patella alta. Very simply put, my knees are not shaped correctly and my knee cap has no place to call “home”. This causes two major problems that I’ve had to deal with since I was very young. A) Because my knee cap has no place to call “home” it likes to move around a lot, and some of the ways it moves and the places it likes to travel are not conducive to walking. I’ve actually had several doctors that have examined my knees tell me that they’re really not sure how I’ve been able to stay as ambulatory as I have over my life. B) All this movement causes pain in its own way and then its always severely worn down the cartlidge on the back of my knee cap which has led to severe arthritis in both knees.
  4. Ehlers-Danlos Syndrome Hypermobility Type III. This is the biggie and impacts my life in many, many ways. EDS is a genetic mutation that impacts how collagen is produced in my body. Why is that important? Collagen is the “building block” for almost everything in your body other than bones. Humans have collagen in their skin, muscles, tendons, organs, arteries, veins, tooth enamel, hair, fingernails, etc. There are different types of Ehlers-Danlos Syndrome that impact different “soft tissues”. I have what’s known as Hypermobility Type, which mostly impacts my ligaments, muscles, tendons and internal organs to various degrees. There are other types of Ehlers-Danlos Syndrome that impact the veins and arteries to a larger degree. It’s also somewhat unclear why it affects some joins in some people and other joints in other people. For example, most of my problems — even since I was very little — are in my low back, hips, knees and ankles. My shoulders, wrists and hands have always been relatively “stable”. Other people I know have really bad hypermobility in their fingers, wrists and shoulders, but have never had an ankle roll or a knee dislocation.

I figured I’d spend the rest of this post in an FAQ style format.

Why can’t you just take a collagen supplement? I see ads for them all the time, and they helped my grandma when her knees were bad.” 

Collagen supplements are great, and its awesome that so many people use them and get relief from them. The basic science behind collagen supplements is that as we get older our body stops producing collagen in the same ways it did when we were younger and some people need a boost of collagen via supplements to keep things moving well. Ehlers causes a defect in the collagen within my body — not a lack of collagen If I were to take a collagen supplement, I would be producing more bad collagen — not fixing the already bad collagen.

What exactly is a “subluxation”? What’s the difference between a “subluxation” and a dislocation? 

A subluxation is a partial dislocation. I have had full dislocations where the joint completely separates and comes apart. Usually, when these happen especially in my ankles or knees, I fall down. With my last major ankle dislocation, I also broke part of one of the bones in my ankle. Dislocations are horribly traumatic. More often — sometimes more than once a day — I experience joint subluxations. My ankle, knee, wrist, shoulder, vertebrae in my low back or hip slides partially out of alignment and then usually slides right back into place. How much pain these cause varies greatly from a minor twinge to pain that has me immobilized. It also varies greatly how much each subluxation impacts my life. A minor subluxation of my hip can cause me days of numbness, pain, and other issues. A minor subluxation of my knee while sitting down is no big deal. A minor subluxation of my knee while walking can be a huge deal and will sometimes lead to a full dislocation.

You also have several other medical issues. What’s the deal with that? Are they related? 

In the same way that the defective collagen has caused problems with my knees, ankles, hips and other joints, it has also caused many internal problems. For example, collagen plays a critical role in how your intestines function. Because mine is faulty, my intestines don’t work so well. You have several really important muscles in your body that aid in digestion and the faulty collagen has weakened those. You also have quite a few ligaments, tendons and muscles that hold everything in place. Because the collagen doesn’t work correctly, those things are either not in the right place internally any longer or they are larger than they should be due something called “prolapse”. It’s not a fun place to be.

What’s the cure? When will you be fixed? 

Unfortunately, there is no cure for Ehlers-Danlos and most of the research money goes towards helping those with “vascular” type since that is life threatening. Also, while not technically classified as a degenerative disease since the collagen in my system technically isn’t getting worse over time, the impact of all those subluxations, dislocations and other nasty things going on internally are degenerative. A good case in point is my wrist. For many years, my wrist has been fine and not shown many signs of hypermobility. But, because I’ve fallen on it a handful of times, hyperextended it or done other nasty things to it, it now gives me lots of problems.

That’s the 1,000 word edition on what’s wrong with my body. If you have any questions about any of this, please feel free to add them in the comments and I would be happy to answer them. If you’re seeing this blog post due to a google search about Ehlers-Danlos and if you think you might have it, I would encourage you to find a reputable genetics clinic in your area and ask for a consult. Many doctors will go their entire career without ever seeing anyone that has been diagnosed with Ehlers-Danlos and will often miss what’s actually causing your symptoms. Don’t give up until you have the answers you need.

TV Review: Catching up on NCIS

20999963I’ve recently been spending quite a lot of my “Netflix” time catching up on NCIS. It’s a show that I’ve always really loved, but I got behind and then couldn’t find it online. Thankfully earlier this summer, Netflix added it to the streaming lineup. I’m just about to finish up Season 11, which only puts me a season behind leading into the fall premiere.

There’s a reason why NCIS continues to be one of the top-rated shows on TV. While it’s a bit formulaic — Sailor or Marine is killed & the NCIS team is called in to investigate — it frequently keeps things interesting with story arcs that cover more than one episode and adding “current events” elements without it being too kitschy.

I also think a strong part of its appeal is that the main character Leroy Jethro Gibbs played by Mark Harmon is someone that boomers can identify with in their age range.

However, I think the biggest reason that people keep coming back is what is not in the show. While there is certainly violence and lots of talk of murder and even some really good make-up effects with dead bodies, the violence never feels gratuitous.

There is also very little sex. It’s not a show you have to worry about you kids (or for me, nieces and nephews) walking in while you’re watching and seeing someone half naked rolling around on a bed. That’s not to say that there aren’t relationships, but they are hinted at rather than shoved in your face.

This fall with start the 13th season with Mark Harmon leading the cast, and I’m not sure that there will be a 14th season with Harmon involved.

If you haven’t watched the show — or if you’ve missed any episodes and want to catch up — seasons 1-11 are now available on Netflix.