Posted by Emily Block | 0 comments

...And the Bad


   Unfortunately not all my upcoming adventures are going to be so fantastic.  During the CCSVI surgery my doc saw something that may be dodgy when he was all up in my brainstem and recommended I go see this specialist about cerebellar tonsils in NYC.  I had no idea what that was, but it was in NYC, so of course I was more than ok with that.  If I have to go on a medical vacation, it might as well be someplace awesome right?  

    But soon I was brutally assaulted with reality when I brought up this cerebellar tonsil thing with one of my good friends who happens to have the same health issues as me.  He kind of blanched a little bit and then told me that "cerebellar tonsil issues" was code for chiari malformation.  Which just flipping sucks because chiari malformation, if I have it, requires brain surgery.  Bloody flipping hell.  
This is what it looks like.  More info here.

   Much research into this ensued and we decided that I would have an appointment with this super neurosurgeon (who is actually in Washington DC, not NYC) after I'm done with school in May.  But then my stupid body started doing more stupid things and I learned that those stupid things were not good signs in my neuroanatomy class. So, we moved it up to seeing the doc during my spring break.  Oh yes, I pouted, but got over it quick enough when my awesome family decided to make it into a family vacation so I could see all of them and have some fun outside of the medical stuff.  Now it's just about three weeks away and I'm really happy I pushed up the appointment.  My stupid legs have been extra stupid lately with tripping and falling when I go to get out of chairs a lot more often.  Plus lots and lots of shaky time.  I had a neurology appointment and it showed a bunch of things were getting worse in terms of reflexes and a bid in coordination.  In addition to chiari testing, I'll be evaluated for tethered cord, cervical instability, syringomyelia, and those tests would likely show anything else that would be wrong with my CNS.

   So that's where I am.   Most of the time, I'm pretty ok with things. I know I'm pretty good at getting through yucky stuff and I have a great support system.   Still, the idea of a large, painful surgery isn't thrilling.  I won't be able to get a job this summer or do some of the international trips I was pining after.  Hopefully it won't mess up my graduate school work, but it is a possibility.  I'm a little scared, but less about the surgery and more about the weakness getting worse and whether that will be progressive or permanent. 

   Daily life has a way of consuming most of my thoughts through.  Grad school gives me plenty of things to think about (and study) and do.  
   I'll be posting updates regarding these tests and surgeries on my caringbridge page since I want this blog to be more focused on fun stuff.  :0)




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Posted by Emily Block | 0 comments

The Good News...

   Well well, it has been a while, hasn't it?  Now that I'm at the one year mark for many Semester at Sea milestones, I've been thinking a lot about my fabulous past adventures as well as some upcoming ones.

 Though I can't say that I am snuggling with cheetahs like I did this time last year, I've managed to keep myself busy with some smaller adventures.  I know that weather gets a bad reputation as being something mundane to talk about, but I'm thinking that doesn't apply to Boston weather.  I got my first snow a week or so after the hurricane and have been enjoying a frosted landscape many times since then.  I even bore witness to what some news stations called the second worst blizzard in Boston's history!  There was even thundersnow!  I had a great weekend exploring the campus and getting plenty of exercise "walking" through up to waist deep drifts of snow!  Every time I see the white stuff falling from the sky, I instantly become five years old and run outside to play.




Before this, the last snowman I made was on Mt. Fuji in Japan! Crazy life!

My wheelin' snowman.  :0)



That would be 4ft high drifts of snow blocking the entrance to my class...

But I made it there..

...With varying amounts of difficulty.


  I've also been enjoying some fun times with my amazing classmates.  I'm blown away by how they take my shaky times in stride and offer to give me rides so I can go out and have fun with them.  In early winter, three of us tried our hand at glassblowing.  I was nervous beforehand because I figured that wasn't exactly POTSie friendly.  I would be standing for long periods of time in a really hot room wearing long pants and sleeves   It turned out to be pretty much fine though!  I wore my cooling vest and got some help from the instructor when I couldn't lift the pipe by myself.  Just another thing on my list I realize I actually can do.  :0)


We made pumpkins! 
 On January 4th I had my third CCSVI surgery after my silly right jugular was almost completely collapsed again.  Though not thrilled about having ANOTHER surgery, I was thrilled to get rid of the vision problems, headaches, and other symptoms after the surgery.  I had only a week or so to recover before a very tired and blood thinner-full me went back to Boston.

Note: this was before the meds.

 Luckily, I had some excellent company!  My dad went with me as part of an extended layover on his way to India.  We had lots of good food and fun times.  The highlight was that I was randomly able to make the hike out to Thoreau's cabin at Walden Pond.  I have wanted to for ages, but could never get there before due to feeling yucky.  There was much rejoicing!


We had way more fun throwing rocks at ice than should be possible...


I did it!



    I have some exciting things coming up as well.  In about three weeks I'm meeting my family for a fabulous spring break trip to New York City and Washington DC!  Then, this summer, we'll be using my newfound ability to tolerate humidity to go on a long awaited trip to Hawaii.  I can't wait!  And probably the most exciting thing of all is that my longest and most excellent friend and sista from anotha motha is getting married!  So much to look forward to!

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