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.

First, do no harm

I wish that when the founders were writing the constitution and the bill of rights that they had added a provision that could be looked at as “first, do no harm” or “primum non nocere” if you want to be fancy and use the Latin.

Think about what it would mean if we could apply that philosophy to some of the big issues of the day.

For example, you’re absolutely right that the Westboro Church has the First Amendment right to spew their hate and vitriol in the way that they do. But, what if we could show that because their speech causes mental harm to others. Could we use that as a test as to whether or not their speech should be allowed?

The same with the confederate flag. Yes, I know that those that fly it and think that it should be flown at statehouses, etc. consider it a part of their heritage and again their First Amendment right. But, shouldn’t their neighbors (whether their immediate neighbors in the personal sense or those that exist in the same city or state in the community sense) also be considered?

I could write a whole essay on how this applies to the Second Amendment. I completely understand why the Second Amendment was so important when the Constitution and the Bill of Rights was written. We are a country of revolutionaries and the Second Amendment was absolutely needed at the time. These were people that had suffered under British rule — including forced relocation.

I wonder if the founders had the gift of foresight and could have seen the guns that are available today and how they are being used if the Amendment would have been written in the same way.

When will be able to say that the current gun laws allow for more harm than protection?

Walking in fear

zebrasImagine walking around knowing that every step you take could potentially lead to a reaction that would cause excruciating pain. If you’ve ever broken a bone, this is the type of pain that you would experience.

That’s the fear that I face with every step — especially steps off curbs, stairs, or anything with a height imbalance. A simple trip can be disastrous. A slip on something wet can lead to months of immobility.

A few hours before writing this post, I slipped in the bathroom. The only thing that saved me from a full-on dislocation and subluxation was a quick grab onto the counter that kept me upright.

I’ve lately realized how much that fear has seeped into other areas of my life. I stay away from crowds because I don’t want someone to bump into me and throw one of my joints out of whack. I avoid walking in places that may have steps, curbs, or ledges. If I don’t know if an event — even if it’s just a birthday party — will be in an “accessible” location, I won’t attend.

When I was in Fargo a few months ago, more than one person mentioned that I use the word “can’t” too much.

I need to fix that.



Review: Six Wives by David Starkey

six wivesI just finished reading “Six Wives” by David Starkey. I’ve been obsessed lately with historical fiction about the Tudors and specifically about Henry VIII and his six wives.

Six Wives is not historical fiction, but purports itself to be “a study” of the history of these people.

The challenge is that after each wife was dead, Henry VIII and his aides obliterated the actual history of the women, so it’s hard to reconstruct that history.

The book is an interesting read. But, if you’re looking for an in-depth look at the wives — their personalities, their thoughts, etc. — this is not the book for you.

If you’re interested in an in-depth look at The Great Matter and what lead Henry VII to split away from the Catholic Church, this book does a pretty amazing job at that.

Commitment to blogging …

So, you may or may not have seen the post last week about me launching a new genealogy blog.

One of the new things about that blog is that I’m committing to posting something Monday – Friday.

Since genealogy is still mostly just a hobby and not making me any money, I wanted to find a schedule that would allow me to do this and yet not take up a huge chunk of time that wouldn’t be sustainable over time.

So, what I decided to do is break it down into different ideas for different days.

Mondays – I’m going to posting obituaries. Most of these that I post aren’t available online anywhere and will be a good opportunity for people to find the information online.

Tuesdays – This is going to be family day. I’m going to share what I know about the various surnames I’m tracing. This will start with Phillips, Berryman and Reed.

Wednesdays – This is one that is going to be the hardest as it’s the most “content-rich”. This is all going to be about discoveries made while doing genealogy research, how I do my research, how I organize my research, etc. It’s definitely the most time intensive of all 5, but hopefully will also be the most interesting.

Thursdays – I’m going to be doing a “rolling” calendar of genealogy / family history events. I’m hoping to include many on the Tennessee and Kentucky area, but also will include online webinars, national conferences and more.

Fridays – I read a lot about genealogy and family history and see a lot of different links on the topics. This will be my opportunity to share that information.

If you want to follow along, feel free to go check out the other blog —

Don’t Quit

DON'TTowards the end of my work day, I started to feel a bit unwell. I had a fairly busy weekend, with not a lot of rest, so this wasn’t entirely unexpected.

I decided a little post-work nap was needed, so I headed to bed to go read and rest for awhile.

Unfortunately, I couldn’t get my body to settle. For about an hour or so, I would sleep for about 15 or 20 minutes and then need to get up and use the restroom. I hadn’t really had a lot to drink, so it was obvious that my body was trying to flush something out of my system. After 4 or 5 trips to the bathroom, my body finally settled down and I was able to get in a nap. It turned out to be a much longer nap than planned, but I din’t really have anything else to do I suppose.

When I woke up, I was feeling fairly defeated. However, within about 5 minutes a little diddy that has seen me through some very tough times popped in my head. This, along with the serenity prayer, were often my mantras in my teens and early 20s when things were at their worst.

It was just what I needed today and will hopefully be of some help to someone else.

By the way, after going to get something to eat, I’m writing this while sitting on my bike getting some exercise minutes in.

Don’t Quit by Edgar Guest

When things go wrong, as they sometimes will,
when the road you’re trudging seems all uphill,
when the funds are low and the debts are high,
and you want to smile but you have to sigh,
when care is pressing you down a bit – rest if you must, but don’t you quit.

Life is queer with its twists and turns.
As everyone of us sometimes learns.
And many a fellow turns about when he might have won had he stuck it out.
Don’t give up though the pace seems slow – you may succeed with another blow.
Often the goal is nearer than it seems to a faint and faltering man;

Often the struggler has given up when he might have captured the victor’s cup;
and he learned too late when the night came down,
how close he was to the golden crown.

Success is failure turned inside out – the silver tint of the clouds of doubt,
and when you never can tell how close you are,
it may be near when it seems afar;
so stick to the fight when you’re hardest hit – it’s when things seem worst, you must not quit.