One week left of the blog

So we're about a week left of the blog.  I've grown accustomed to blogging  it'll be tough to break the habit.  I'll have to find a new pass time of where to store my little thoughts.  That being said.  I was in almost no pain today.

The trouble is, when I am in pain, it is very real and limiting at times. But when I'm not in that intense pain, it's not too bad. And I can live with it. I feel the eye muscle almost all the time. but it's just uncomfortable not painful.  Well, probably 20-30 min out of the hour I feel it.  Today was a great day,  Very little eye pain/discomfort although I did have one good jolt to the rt. sup. obliq. while I was talking to Jim, interrupted my thought and just had to wait the 30 sec. til it passes.  Then, it's past.
It was hard enough to build up the courage last week, when I felt the intense eye/face pain and my blood vessels were going crazy, to call the Dr.'s.  Dr. G called back but I just don't want to call and bug these dr.'s any more than I really have to. I wish they could see me when these things are actually happening.  When they're not happening, I don't know really what to say.

Group therapy ;)

So I am typing this at the hospital in Hastings. My grandfather, who has severe parkinsons fell yesterday out in his yard and broke his hip and I am sitting here in the dark with my little phone watching him try to sleep. Long story short, I got to talk with my aunts and uncles and compare notes. My uncle Jerry has had multiple eye muscle surgeries and gone through his own nightmare with nerve pain, following a serious accident 15 years ago. So I learned things from him. Then my aunt Nancy and I talked a little about knees dislocating. Of course my other aunt Gail was here and my grandma, and I can see my future in them. They have survived somehow, by the grace of God. It gives me hope. I'll be okay too. What's nice is they all can still laugh about it. Truthfully, it feels good to see people who look like me and know what it's like to be atypical. I don't feel like a freak when I am with them. I have more understanding.

Knee

My knee partially dislocated today.  This is the first time for me.  It was very scary. I was just getting into my car when the back of my knee gave out.  I had to sit for a minute to figure out what to do. Then opened the car door and set my leg out and moved it back into place.  This is a sad day in the view of someone with a connective tissue 'issue'.  I don't have the heart to tell Jim. I don't know what's happening lately. But something definitely is happening.

Vein Issues

I wish I was talking about my 'vain' job.  But I'm not.  My blood vessels are acting up again.  My left pinkie has been rupturing 3 times in the past 24 hrs. 2 times at work, the finger goes numb until the blood moves out of the finger. Then tonight during a mtg. my left arm started feeling funny around my wrist.  I looked down to just watch the veins start bulging.  It even wiggled a little as it grew. I nudged Jim and showed him. After 10 min. it went away.
Guess what? As I type this, my pinkie ruptured again.  I give up.  Freak of nature in full swing.
My eyes weren't too painful today. So that's good.

6:35p.m. - I called the genetics dept. at Mayo this morning as she once told me to call her if I have any other blood vessels rupture.  She called back but of course I missed it as I was at work. UGH.
Dr. H never called back, I don't know if his secretary forgot to give him the message or he's super busy or I finally drove him nuts and he can't bear to talk to me. :) I'm hoping for one of the first two options.  Just wanted to get into see someone about eye/face pain.