An overdue update...

I've not posted in quite a while! It doesn't mean that I'm well or healed, that this journey is over.  It just means that life has been busy, pulling me other directions.  I find a lot of things to keep me busy.  I've been putting a lot of time into my daughter who is very sick.  There is always something else to be done, someone else needing us.

Where are we on this journey?  I've not had any more procedures, any more visits out of state, since last summer.  I am very much due a follow up with a neurosurgeon, though.  So many things have been worked on, some are better.  But, so many more are falling apart.
Currently, I believe that my biggest problems are in my neck and head.  I have instability in my upper vertebra, between c1 and c2 (also called atlantoaxial instability).  These are the vertebra that support the skull and the motion when it turns.  Like so much of our EDS bodies, our vertebra slip apart and/or overextend.  When mine was last measured, there had been some significant change.  Now, I am becoming much more symptomatic.  So, what are the symptoms of upper instability?  They are vertigo, dizziness,  neck pain, balance problems, blurred vision, pain in shoulders, poor gait when walking, and more.  I have all of these thing and the more that I mention. :D 
Now, to accompany my instability, I have progressive chiari and intracranial hypertension symptoms.  My headaches have increased in frequency and severity.  I have much more pain in the back of my neck and head.  I have high pressure when I wake every morning along with difficulty with my vision.  I have developed spots in my peripheral vision.  I have near constant nausea that is caused by neurological damage.  I have tremors and occasional contractions in my hands.  I have, I have, I have....

I still need to see a neurosurgeon but there are other things that come first for me right now.  I am thankful that I'm not confined to a bed, that I can still enjoy my family.  I know that there are bad days, hard ones, sick days, dark days.  But, you'd be surprised how tough we Zebras can be.