Monday, August 24, 2015

EDS: Ehlers Danlos Syndrome-What you talkin' about Willis?

Both my husband and son have been diagnosed with a once thought rare condition called Ehlers Danlos Syndrome or EDS for short. I have to share this story because MANY people have it and do not even know it. They need to know what it is since it can be debilitating and even deadly...

 Around the age of four, I noticed my son's ankles. They drooped in towards each other. It looked bizarro, and wrong, so at age 6, I finally took him to the doctor. And she referred him to a pediatric orthopedic. I figured this doctor would look at his ankles, measure his height, ya know, go through the typical procedures and routine. Then, offer us an explanation and a solution. Uh, nope. Bigger deal than weird ankles.

She looked at him from head to toe. Asked a billion questions and then preceded to tell me, "Your son has Scolios and I am recommending he be checked by a geneticist for EDS." ...Silence, confusion...huh? Say what? 
 She let me know (very respectfully and gently) what in the world EDS was and the concerns and the best place to get information. We took an x-ray of his back and it confirmed the Scolios. We had to go get his feet molded for inserts he will have to wear for the rest of his life. 

Before I tell you what EDS is in case you don't know, I will be honest...I was shocked, wanted to panic/worry, and melt into a puddle on the floor, but I kept it together long enough to break down a bit at home. Then, after much prayer and with renewed strength/faith in the Lord, I was on a mission to help my sweet boy!

Ehlers Danlos Syndrome is a genetically inherited disease that effects all connective tissues, think joints/tendons, etc. Those who have the disease don't produce collagen so their joints are very loose. There are 6 major types and my son and husband (who passed on the syndrome) have Hyper-mobility Type. This means they can do cool party tricks with their body (think double-jointed which is actually what EDS is). 
On a serious note, it really means a life time of fighting your body! It can cause random pain, chronic pain, dislocations, trapped and or stretched nerves, sprains/strains and muscle tears as well as other physical problems to the point of not being able to use parts of their bodies. One can injure themselves just through ordinary activities.  EDS has been called the invisible disease and here is why...

What is really hard is that those with EDS look normal and healthy on the outside so people have acted like my family is making this up and many doctors have misdiagnosed my husband, ignored the diagnosis or worse told us it was "all in our heads."

However, many people have believed us and been supportive and that is huge when you are facing something daunting like a diagnosis.  
Sometimes it is hard to swallow the blows of living in a fallen, imperfect world, but I am finding that as I have placed this crazy EDS in God's hands, I have been better at supporting, advocating and being compassionate towards my husband and son. This answer, although not one any of us want, has brought so much understanding to past peculiar injuries and physical problems my husband has had in the past. 

I know God is carrying my family gently through each day, week and month that EDS makes itself known that it is still there. The greatest reaction I can have is giving every part of this to our Lord Jesus and in return he meets me right where I am...and yet, where I am moves and changes...my respect, my reverie, my understanding who he really is grows.
  
To learn more about Ehlers Danlos Syndrom go to Edsawareness.com 
and or  www.ednf.org

Happily linking up with Jen and other sweet sisters at  http://www.findingheaventoday.com/p/about-soli-deo-gloria.html
                                        
 






 



Tuesday, July 7, 2015

Challenge(s)

Write a post inspired by the word: challenge

Once again, I find myself baffled and challenged to help my husband figure out which bazillionth, stupid thing is causing his headache, nausea and weird shaking. And no, it isn't coffee.

The challenge doesn't just come in the mystery trigger, but also in the shopping, planning, preparing, and cooking of meals. I am the grocery CEO and chef so the burden of managing this portion of our lives has fallen so kindly on me. And I am tired. I have days where I hate food.

For roughly two years, we have been creating a color-coded, beautifully crafted spread sheet of what food items cause awful symptoms. This includes a dinner menu, slash grocery list so wifey here doesn't kill her hubby with food.
    My spouse (the sweet, special one) has food allergies to oats, chocolate (that is SO wrong), many preservatives and is gluten-intolerant so cooking is rarely ever convenient. If food comes in any packaged, boxed, or canned form, it must be inspected, scrutinized, analyzed, criticized, and often snubbed. 
If you need a vegan, vegetarian, gluten-free, raw, or grain-free recipe-I'm sure I have one. 

Yet, there is more to this story than frustration... 
 I have risen to these challenges. We eat more whole foods in there natural state and we all feel better. Not that we never eat junk food.  I have just had to learn to look at food differently, have had to cook more items from scratch and it does taste better, but most importantly...
  
I have found God faithful as always...providing strength and ingenuity. I have grown immensely in planning, organizing and executing in ways I did not before and my compassion, patience and gratefulness have deepened for my husband. I find myself getting better at serving others instead of myself. I know that is because of God's work in my family and in me. 
Changing because of God's doing is always beautiful, but more often than not-painful. I have had to hand over a TON of insanity-sick-of-it moments, but God has exchanged these with periods of peace, joy, laughter and bonding. So even though I still sometimes loathe dealing with food, I know that this is more about his work in my family and me and less about the food.  

 P.S. I will always miss the convenience of eating out. It is rarer these days and yes, I know that is a spoiled luxury we have in this country.

Linking up at : MamaKats 


Tuesday, June 23, 2015

Don't ever post pictures of your kids! Here's why...

About 6 months ago, I noticed a pattern on my blog statistics...I was looking at who was reading and following my blog. Discovering a certain follower who seemed to target my posts that ONLY had pictures of my children on it, I became alarmed.
 So I prayed and gave it some time because I am capable of jumping to conclusions without evidence and sometimes truth.

Sure enough, I saw God lead me to another post about stalkers (unfortunately, I have had one)...well, this blogger's post was actually about blog stalkers, however, it brought to my attention something I had never thought about. Silly, perhaps, but I realized how naive or thoughtless I can be about the internet even though I know that anything put out in cyber space is usually permanent. Ugh!

I conducted an experiment on my blog.  I took off all the pictures I could find of my children and EVEN ones of me that showed more of me (not that I post scantily clad pictures of myself anywhere).
Did you guess it? That follower quit following me! Hmmm, seems a bit suspicious to me.

During this process a question came to mind..."Should I really be posting pictures of my children on my blog?" It isn't as if they gave me permission. And, well, we live in an ever growing perverse world where access to people's private lives is so easily attained with a click of a button.

 It is your choice, but I urge you to reconsider giving anyone the temptation to use your pictures for their impure, unholy choice of pleasure!

*I also deleted a lot of images from my social media page even though that has some limitations to access and privacy I can set compared to my blog. 

Linking up here: http://www.solideogloriasisterhood.com/

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