EDS

I had to pee sooo bad! I rushed to the bathroom and made it just in time it seemed.  Ahhh, Relief.  But then again, no relief at all.  I can't even finish using the bathroom because of the severe pain in my lower abdomen.  I can't stand up with I'm done.  After I flop onto the floor and gather myself, I have to lay down for a minimum of fifteen minutes due to the extreme amount of pain.  Using the bathroom is something women do an average of twenty times a day during pregnancy.  And for me, it is a small example of the uphill battle I fight every day of my life.

I have Ehlers Danlos Syndrome.

I am in pain every single day.  Being pregnant makes the pain unreal.  I have a high pain tolerance because I am used to having this disease, and I put a smile on my face to hide what's really going on.  It hurts to walk, it hurts to breathe.  I cannot do the normal, everyday things, even the ones I would do in pain previously.  The pain in my lower abdomen and hips had reached such extremes that I called my OB Nurse yesterday.  ( I usually wait until the pain is unbearable ) She was shocked at my symptoms and suggested I go into the ER immediately because it is so bad that I cannot wait for my appointment in two weeks.

I had symptoms that would be associated with kidney stones, gall stones or a severe urinary tract infection.  They were going to give me a catheter and the next step would be something serious.  However, when all my testing came back they concluded that it was just my EDS.

EDS is a connective tissue disorder that effects joints, tendons, ligaments, blood vessels and organs.  Looking at me from the outside, you would never know.  But it is very real and people live this nightmare of the "invisible disease" every day.  It's not "will I be in pain today?" it's "HOW MUCH pain am I going to be in today?".

It hurt before I was pregnant, but feeling the way I feel now shows me the need to spread awareness for this incurable syndrome.  So many people have the same pain I have now without being pregnant.


http://www.youtube.com/watch?v=9OsjYRpGgQs&feature=related

http://www.youtube.com/watch?v=E8wGUoUT8BY&feature=related

I remember when it really hit my mom and she was bed ridden.  All of us kids had to pitch in the keep the house to my dad's standards.  I remember climbing on the counters to put away dishes that we couldn't reach and just wondering when my mommy was going to get better.

I remember when my brother Drew would cry because he wanted to ride in the stroller, and we would make him walk.

.... the countless times Drew would get shots in his shoulders during swim and water polo season.  He was so impressive even through the pain.  He never missed a game or practice, yet it hurt too bad to drive himself there.  His good attitude and being such a team player earned him the Coach's award countless times.  Yet no one knew the pain he endures while fighting.

I remember when my brother Matt had surgery.  And when he would cry at night because his legs hurt so bad.

I remember every one of us kids having heating pads on our legs and hips at night while we would sleep.

I remember when the doctors told my mom she would have to be in a wheel chair.  That was over twelve years ago.

My brothers and I all have EDS.  It is genetic and has been passed down from my mother.  Her mother has it, her brother and sister have it.  And so did my great grandma.  My baby will have it, and will continue to pass it down.  Life is still worth living, but no one said it would be easy.

Our mascot is a Zebra.  Because when people hear hooves they automatically think "horse" (fibromyalgia, cystic fibrosis, artheritis, etc.) But no one would guess that we're really zebras.