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.

Walking in fear

Imagine 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.

 

 

Don’t Quit

Towards 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.

Being interrupted …

I’m participating in the 2nd phase of Jon Acuff’s #30days to hustle group.

Today’s post was exactly what I needed to hear. It was all about not letting interruptions sidetrack us from our long-term goals.

This past week, I’ve been fighting a massive cold and its been a huge interruption. It’s been a interruption not just in my writing goal, but also in some of my other goals as well.

Most of my days this week have consisted of me:

> Trying to be awake and alert enough by 8:30 to start work.
> Struggling through my mornings a bit, and trying to be as productive as possible in the afternoons.
> Taking a nap starting around 5:30 pm. One night, this was a 5-hour nap.
> After my nap, getting some work done to make up for my really unproductive mornings.
> Dealing with a very stuffed head and garbage bags of tissues.

This means that I haven’t been to the gym in 9 days.

Writing has been a huge challenge both because of my general brain fatigue from the cold and/or my unproductive issues at work have meant that I need to use my normal “writing” time to catch up on work.

I’m really hoping this cold goes away soon, and I can get back on track with my goals. In the meantime, I’m not going to let these interruptions keep me from moving forward.

How we choose to live with illness

In between all the tweets about the Golden Globes, my Twitter timeline was literally blowing up tonight about a certain issue.

Some background:

• Lisa Boncheck Adams is a woman in New York living with Stage 4 breast cancer. She often tweets and blogs about her daily life, treatment she’s receiving and other issues.
• Emma G Keller is a writer for The Guardian. She wrote this article about Lisa’s use of social media. She compares Lisa’s use of social media to funeral selfies.
• Bill Keller is an opinion writer for the New York Times. He also happens to be married to Emma G Keller (previously mentioned). He wrote this opinion piece over the weekend about Lisa’s use of social media and her “fight” against cancer.

I believe that Lisa has every right to not only seek out any treatment that can help her live and to document the process in whatever way she wishes.

My biggest problem with the Bill Keller opinion piece is his comparison between Lisa’s fight and his father-in-law’s choices about cancer — as if one is better than the other.

I have been criticized in the past, even by some close to me, for sharing too much information about my health struggles. In reality, what most people don’t realize, is that I only share a fraction of what I deal with every day. I try to keep my social media channels upbeat and not full of negativity when some days being negative and a big grouch is all I feel.

I also have chosen, at the moment, to live my life medication free. I could be on a whole pocket of pills for the pain, muscle cramps, acid reflux, digestive issues, poor moods related to the other issues. Instead, I’m choosing to live a medication and pill free life. This is my choice.

Does it mean that the pain is higher than it could be if I was on something stronger than Advil? Yes. But, I don’t like what pain medication does to my brain so the pain is a better trade off.

Does not being on anti-depressants mean that my moods are a bit more variable than they would be if I was on pain meds? Yes. But, I was tired of dealing with the side effects of the anti-depressants — including the weight gain — and also feeling like I needed to be on something to live a normal life.

However, I know many people with EDS and other conditions that cause chronic pain, mood issues and other programs and I applaud their efforts for getting the treatment they need to make it through their day. I feel so bad when I hear stories about medications being taken off the market or restrictions being put on medication that makes it harder for people to get treatment they need.

We all have the right to face life and death in whatever manner we choose. If anything comes out of the discussion over Emma Keller and Bill Keller’s pieces I hope it is that there is no right or wrong way to deal with illness.

A broken ankle

Due to my genetic disorder, I’ve had relatively few broken bones. Loose ligaments and tendons tend to give (and sometimes tear) before bones break.

At some point, I had a tiny fracture in my wrist but didn’t know about it.

My other two broken bones have been both of my tibias and those were intentional to correct the alignment of my knees.

I now have a broken ankle to add to the list.

My slip and fall last week led to a broken medial mallelous. I was really hoping it wasn’t broken, but I was wrong. I also have a torn ligament in there, too.

I’m now wearing a giant boot and trying to stay off of it as much as possible to let it heal.

Thoughtfulnes

If I had one word to describe how I want to spend 2013, thoughtful would be it.

I want to be thoughtful in everything that I do.

• When I’m working, I want to be thoughtful about the work that I’m doing and do a good job for my employer and my clients. 
• I want to be thoughtful about my personal time and how I’m spending that time and use that time for growth.
• I want to be thoughtful about what I’m doing about my health.
• I want to be thoughtful about the food I eat and not eat mindlessly.

That’s my goal for 2013.

First juicing experiment

Finally put my new juicer to work today. The general plan is to substitute a meal or two a day with either juice or a smoothie … we’ll see how it goes. 

For the first experiment, I needed to use watermelon. Mostly out of necessity. While putting away the groceries, I had dropped the watermelon and needed to use part of it before it went bad. 

Kris Carr over at CrazySexyLife.com recommends 3 to 1 veggies to fruits ratio. I thought I would try 2:1 and see how that went. I did spinach, watermelon and celery. 

Learned a few things — lots of spinach doesn’t really makes lots of juice and very little watermelon makes a lot of juice. The other thing I learned, celery takes over the taste of that juice combination. 

I made it halfway through the juice before I went in and juiced an apple in to the mix. Celery, spinach, watermelon and an apple is a pretty tasty combination. 

Self Worth

I was planning on writing a post this weekend about self-worth. The past couple of weeks at work have been tough. I’ve been super busy, and we hired a new person who has been doing an amazing job. The two collided, and I was left questioning what I was bringing to the table. Was I doing enough? Why was I getting so emotional over things?

It was a pretty tough time.

There have been times in my life, like now, where too much of my self is tied in to my work. If I don’t feel like I’m doing well at work, I have a hard time feeling like I’m doing well at anything. There’s no balance.

On Friday afternoon, I realized a couple of different things. A) I needed to do a bunch of thinking and get my head straight, and B) I needed to not work much over the weekend.

I basically had a “come to Jesus” meeting with myself over the weekend and got my head back on a little straight. I read a couple of books (pure fiction) over the weekend, and I drove out to Modesto to see my brother, sister-in-law and my super cute niece and nephew.

While out in Modesto, I heard the news about Trey Pennington. I’d never met Trey personally, but I had exchanged messages with him on Twitter. I was devastated to hear about his suicide and it made me think even more about the things I had been thinking about earlier in the weekend.

For me, the best way to describe my depression is like the three pigs and the big bad wolf. I have to be constantly vigilant and not let the negative thoughts in. Sometimes, I’m less vigilant and the house is like the “house of straw” and the depression comes barreling in. Other times, it’s more like the “house of wood” and the depression is out there knocking on the door and will sometimes break down the barriers and get in. Most days, I feel like I am living in a house of stone and as much as the big bad wolf is pounding on the door, I’m able to keep him at bay.

My biggest challenge continues to be finding balance. I need to find things outside of work that allow me to feel a sense of self worth. I need to find people I can turn to when the wolf comes barreling in. I’m just not quite sure how to do those things yet.

“Protect This House”

A friend of mine posted this video to Facebook earlier today. And, it got me thinking a bunch about some things.

If you know anything about Mormon modesty and purity teachings, one of things that is often mentioned is that the body is a temple & a house for the soul. While the body that I was “blessed” with is far from perfect, the damage that my eating habits and other poor choices have done it have certainly not treated it as a temple.

This video is going to be part of my new motivation. How will the choices I make regarding food and other things I put into my body “protect this house”?