Wednesday, March 12, 2014

Where to begin?

I've never blogged so I don't even know where to begin.  I'll start with today.  I woke up with a lot of neck pain and a horrible headache.  I have a headache most mornings but today was worse.  It was one of those that shoots all through your head and makes you nauseous.  If I keep lying still, I can stand it.  Sitting up is so so.  Standing scares me.  I feel like I'm just going to collapse.  As soon as my feet touch the floor and I raise up, it feels like my head has an expanding balloon inside it.  I can't think clearly, the room spins.  I just give it a few minutes and then carefully move. 

Its afternoon now and I've barely moved off the couch.  I'm a doer so sitting here isn't easy for me.  But, its the only choice that I have today.  The weather is bad outside, a drastic drop in temperature, rainy, storms moving in.  The change in barometric pressure makes me, and others like me, very sick. It makes the headaches horrible, makes my joints stiff and more painful than normal, messes with my ability to think clearly.  I figure that's my biggest problem today.  The weather.

Now, lets back up.  A year ago I was a busy critical care nurse.  I was a little stiff, starting to feel a little bad, but I was working.  Not just full time, but overtime when I could.  I'd pull three or four long twelve hour shifts a week.  In between, I was a full time grad student.  And a wife and mom of four awesome teenagers.  That doesn't sound much like today's me, does it?  Yeah, its not.

I have Ehlers-Danlos syndrome(EDS) and multiple other disorders and defects that I'll tell you about.  Ehlers-Danlos is a genetic connective tissue disease.  Its a disease that I was born with.  It can affect anything in your body that is made of connective tissue including skin, ligaments, certain muscles, the digestive system, blood vessels, heart valves,  the eyes....and I'm positive there is more that I'm not thinking of. 

Because I have EDS, some of my bones didn't form right and some have collapsed.  As a result, I have another disorder called a Chiari Malformation.  At the bottom of our skull we have a hole, an opening, for our spinal cord.  When we have chiari, something has gone wrong with this opening and a piece of our brain, the cerebral tonsils, slid through that hole.  In simplest terms, a piece of our brain is falling out of our head.  This causes a long list of problems including pressure on the brainstem, headaches, vertigo and dizziness, dysautonomia (problems with heart rate and breathing), poor coordination and balance, poor fine motor skills, nausea, vision problems, strokes and even death.

With the unstable and collapsed bones, I have developed cervical instability.  Our vertebrae are technically joints, and they often shift, putting pressure on the spinal cord and nerves.  This causes a multitude of problems, depending on where the pressure is and what nerve it connects to.  Instability affects everything, from the brain and the flow of spinal fluid to all of the limbs and organs controlled by your nervous system.

Finally, I had another common disorder among us called tethered cord.  Tethered cord is exactly what it sounds like.  The spinal cord is tethered, or tied down.  It should normally be free floating within the spinal column, with no pressure or pulling.  Mine was held down by a large piece of fatty material inside my spinal column.  This meant that any time I moved, stretched, bent, etc, my spinal cord was being stretched.  For me, this caused horrible low back pain, neurogenic bladder and, over the last year, a tremendous loss of function in my legs along with horrible pain in the legs and feet.

I'll go into more detail about these disorders later, including more detail about symptoms and diagnosis criteria for each, including pictures.  For now, I just want you to see how having one genetic disease can change you from an active busy nurse to an ailing couch potato in a very short amount of time.

I stopped working in November of 2013.  I took off to have a spinal surgery to correct the tethered cord.  Then, I developed worsening instability of my cervical spine which was making me more and more sick.  So, I had surgery to correct and fuse c3-c5.  Now, I am still having a lot of issues with the chiari and the problems it causes in my head.  So, 2 surgeries and 4 months later, I'm still not working.  I'm still in school, though.  I plan to be a Family Nurse Practitioner when this nightmare slows down.  I've not given up hope, yet.

For a woman that's never blogged, I've just written a small book.  So, I'll stop there. Once I figure it out, on the sidebar I will include links to websites that are very informative about EDS and these other conditions.  I'll even include a link to my page, where anyone can donate to help my family cover the huge costs of these surgeries to fix me and our travel expenses, medicines, and whatever other new problem that pops up.  And, I'll hope that today I taught someone something new.


  1. I am laying here in bed with my laptop, because sitting today isn't going so well. You are spot on in your description. Although I had to pause reading, I'd lose my place because my body is jerking all over this afternoon. Looking forward to you sharing more of your journey.

  2. I really enjoyed reading this. This will give me a great way to keep up with how you are doing when my own life gets hectic, as it has been the past couple weeks. Hope you are holding up okay this evening, these weather shifts are hard on all of us with pain or joint disorders. I love reading your fb posts, I always learn so much from them.