Come on Comet!

It just gets better and better.
 I displaced my sacroiliac joint again. Funny how the final straw was when I set my little Elijah down on the floor.(he's the baby born on my surgery day)  Boom! It completely snapped.  And I have a crazy week of driving to education in the cities, and then to Missouri. Plus I'm supposed to clean two houses in addition to my normal spa work.  Oh and I invited 20 people over for dinner tonight before this happened.  Oh, Joy!   No bending for me or breathing for that matter.
  This is when I really start praying for a comet to come sailing towards the earth with my name on it.
9/20/10 - so last night I left a msg on Integracare's voicemail that I need to come in.  They called at 7 a.m.  I of course was still laying in bed and I can't really jump out of bed.  So Jim brought me the phone, I made an appointment for 8 and got out of bed. I was immediately struck with this unbelievable headache.  I had it just before I went to bed and made Jim get me a garbage can as I was feeling like I was about to be sick. A vein popped out on my forehead only in a different spot - right between my eyes. I fell asleep and awoke a couple times with this headache. LONG story short - I used the garbage can this morning.  I have never had a head ache like that before.  Throbbing in the back of my head.  It wasn't a migraine but it scared me terrible.  I thought their must be something in my brain swelling and pushing on the stomach area of my brain.
Jim took me to the chiro this morning and will go again tomorrow.  If that head ache would have continued I would have gone to the hospital. I took two tylenol when I got home and laid down the head ache eased.  So I didn't  go to the hospital.  What would they do anyway? I just was feeling quite desperate.

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.  

If you're searching the web...

If you happen across this dumb blog because you searched the web and found it.  Please read the following.
A word of advice...
I have recently come to the conclusion that one would not do well to put to much weight into each personal experience.  Each personal experience is just that PERSONAL!  Your experience is yours!  Mine is mine.  This blog, as I have stated is open to anyone to read, but it mainly serves me and my need to express myself and log the progression of 'things'.
  I learned this as I was doing research on Trigeminal Neuralgia.  It only took me about 3 different accounts of strangers experiences with TN.  I have concluded I will not read any more personal experiences.  It's not encouraging.  I choose to hope for the best.  I will read authentic official medical sites of experts on the subject. Not individuals.Maybe that's cold but I have to draw the line, for the sake of my mental health. What I have left of it. :)
  If you type in Scholar.google.com you will get only research articles that are much more reliable.
So if you're reading this, you should know.  I call myself the freak of Nature, so what does that tell you? That I'm a typical case?  No, I dont' think so.  You will have your own unique experience.  Hope for the best.  What's the harm in that?

What's up Doc.

So I went to Dr. Halstrom today -   took a few days to get in. But my blood vessel started bulging again this morning so I'm glad I went in.  He drew blood to check my "sed" level, to see if there is any inflammation. So we'll hear back this weekend or Monday.
 The guy is good and has been very helpful to me. He still suspects Ehlers Danlos, I may have to look into it.  Plus he doesn't over react. He said if the vessel bursts it should just be a bruise as it is an exterior vessel.  So, hurry up and wait.

Sun, Sept 12th
I've been having a rough go of it.  Yesterday during work the vessels flared again more of a headache in my left temple that only lasted 20 min. I have head aches all my life - who really cares. But I don't usually think,' Oh, I hope they figure out not to leave me in the ST. CLoud hospital."  I felt like leaving the room and calling Jim to tell him to transfer me to Mayo.  But the headache went away and I forgot all about it, til, I went to bed at 11 pm.  I was just about asleep when," OH NO!"  The vessel started inflating again.  It's not so much pain as it is pressure, I tried to roll over and get pressure off of that spot but after an hour and a half I got up because I was sure it was going to blow.  And it's not just my forehead, Actually it's now in the temple and above my ear.  Like the TN without the pain, just pressure.  But you can feel it grow and spread.  I was sure it was going to rupture, but it didn't.  I did get up for a half hour. Couldn't find asprin so took 3 ibuprofen, seemed to help, at least I didn't "feel' the pressure anymore.
IF I WERE A HORSE...