2 months left of this blog...

I decided today that after my one year check up I'll be ending this blog. 

It's no longer about my strabismus surgery.

My feet are now back on the ground, firmly planted.

I had a great year full of surprises some huge absolutely fantastic surprises, like my head is not tilted anymore! I now can see single almost 100% of the time, I get to see 3D movies now.  Just unbelievable joy!

Some surprises involved unbelievable anger and some serious frustration and a good measure of pain.

I met some great people and found a place where I'm not treated like a total freak of nature.

That being said...

The results of my blood work showed no real inflammation. The sed. rate was 2 ( scale is 0-20 I'm told)

Which means we don't know why my blood vessels are acting the way they are.  I've been having a few others in my feet and fingers. Today I looked down and see a bruise on my foot.  I give up.

Halstrom said, "if the vein in your head pops, it will just leave a nasty bruise"  I understand.  But why does this bring me no comfort?  Oh, could it be we are just one layer of bone away from my BRAIN???? Maybe that's it.

My aunt is convinced, and so is her GP, that we have Ehlers Danlos.  I know little about that. I had been focused on Marfans. I may have to switch gears.  Really, I don't care what I have I just want to know what is going on.  I don't need a name I need to understand what on earth is going on am I a risk for blindness or even a stroke?

It is good to have this blog I guess for days like this when I'm mad at the body I've been given and I can go read about the days I felt on cloud 10 and my feet were no where near touching earth.

2/4/2013 - UPDATE

I ran across this post today and thought I should update here.

After going through Mayo Clinics Genetics department and meeting with the Marfans professor there ( excellent, excellent people btw!!! went above and beyond for me) 

I have what is closest to Ehlers Danlos 3.  But I don't have the right heart problems or eye problems. My mitral valve is fine - yet I've had two separate heart problems both needing surgery- one structural the other electrical. 

I also have been diagnosised with Trochleitis with Trochlear migraine.  And in addition have developed Raynauds disease.  Last year was dreadful. This year its more mild.