So…I get a lot of questions such as…”What exactly is wrong with you?”.  This is always meant as a caring, and wanting to understand/sympathize question, but you can probably see why it may not seem like the most caring/sympathetic question.  It truly doesn’t bother me; I understand that chronic illness is confusing and difficult to understand.  It is much easier for people to comprehend diseases/conditions that go away or could go away.  Letting people know that without a significant medical discovery or miracle that this is here until heaven leaves most people pretty uneasy.  It is always hard for me when someone’s face falls when I tell them there is no cure, and we just have to take it day by day.

In order to make it easier for everyone to understand (I may even print this blog out and have it to give to people so I do not have to keep repeating the same tale over and over.)  I have a connective tissue disease called Ehlers-Danlos Syndrome.  This disease basically causes all my tissue to lack collagen.  There are various types of Ehlers.  I did not get the cool kind that could make me a non- chinese acrobat with super flexible joints.  I cannot bend my thumb back to my wrist or fold myself up into a box because my hips are super flexible.  Nope no cool tricks here…instead I have stretchy, velvety soft skin that is irritated by most everything.  Internally this causes my organs not to be held in place very well.  As stretchy as my skin is on the outside…I am even more stretchy inside.  (This sound like it could be interesting…but nope it just equals a lot of surgery!)  My connective tissue is not strong and has allowed most of my important and private abdominal parts to fall.  Gravity is not my friend!  (I guess this means I could be super healthy in space!)  In turn…I think I hate you Ehlers and Danlos!!!!!  Not only are you easily mispronounced….misunderstood…..but you make everything fall to the ground, and I do not like it!
Well here is the real kicker…I am in a rare group of people (not the type of rare or unique you long for) that has severe gastric complications because of my Ehlers-Danlos Syndrome.  In turn, my digestive system has shot craps…not crap which it should shoot.  I have what is called Chronic Pseudo Bowel Obstruction My body basically acts like I have a bowel obstruction all the time, even though there is no mechanical obstruction.  This is caused by lack of coordinated muscle action within my intestines.  So…my bowel actually dilates and fails to work.  In turn, it can not move the food and I end up with a huge plumbing situation.  I basically have clogged pipes.  The other aspect of this disease is that just because the nerves in the intestine do not work correctly, does not mean that they do not misfire and cause spasms and pain.  Oh…that is one thing they do well!  This leaves me with really intense abdominal pain because I have these nerves that just get confused and intestines that are overly sensitive although dysfunctional, which leaves me a little bit of a mess.

So…what does this all mean?

  •  It leaves me on a liquid diet, with little to no fat because that is all my intestines can handle.  (Truly they cannot even handle that!)
  • On a lot of medicine to get as much function from my intestines as possible.
  • Constantly, fighting to avoid malnutrition and the side effects there of.
  • Trying to deal with pain from messed up nerves and overly sensitive intestines
  • Basically needing bowel liquid plumber to keep my “pipes” clean…clogged pipes equal a lot of throwing up.  (This is the reason I normally go on “bowel rest” once a year.  My pipes need to be cleaned out and have time not to work.  This gives them the best shot at working as well as they possibly can.)
  • Fighting the effects of gravity on all my organs.  (In turn, no heavy or really light lifting because my tissue cannot handle the strain.)
  • Dealing with nerve damage to my bladder, which leads to chronic bladder infections.
  • Some more stuff that just gets overwhelming to go into

I hope this is helpful and makes everything a little clearer.  For those who have Ehlers-Danlos Syndrome or Pseudo bowel obstruction… I know it is good to know you are not alone and that others are fighting the good fight as well.  Being “syndromey” is not fun, but it does allow you to see the world in a different way.  It allows you to appreciate the little things.  It gives you a whole different perspective on life.  At the end of the day I know with all my heart that God is using this for His glory…because He uses all things for his glory!  Everyone has their struggles and challenges in life…and Jim and I have this.  It is our choice how we live in the midst of it all!

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