Saturday, February 2, 2013

Mayo, Hopkins and Barrow

I had a MRI follow up about 2 weeks ago.  Its very normal for the cavernoma to be empty before it fills up with blood again.  I have good days, and bad, then a good week, followed by 2 bad weeks.  I thought maybe it was getting worse, or was bleeding again, but I guess it is just the joy of having what I guess i can call “brain damage”. hahaha   The list of weird symptoms is so long, i will spare it….  Some of them are silly, some are scary, some are “oh well”, but most of them are very frustrating… both physically and mentally, but the mental symptoms are what is bothering me the most.  Its hard to not feel in control of yourself. However, I do believe I have a very strong control of “myself” despite some really bad days.  I work really, really hard to fight those symptoms.

Lately, I have been struggling with the realization that its not because I accept other people at their worse that they accept me at mine.  I thought it was pretty natural for most caring human being to do that, but I was wrong.  I will always have the same soul, the same heart… that people seem to like…. so why not accept all of me when this girl is not doing good.  I really cant say that from a lot of people. My true friends and family have been patient with me, and i also learned to stop being so strong all the darn time…. i am so used to just push myself to every limit, stay positive and move on, that when i do feel really sick, which is very often, nobody knows. I think its mostly good that im like that… but bad in the way that even the people the closest to me have no ideas how hard simple tasks can be for me.

I have also come to realize that I have amazing friends.  Within 2 days, 3 of my friends, mind you they dont know each other, have  arranged for me to see 3 of the best neurosurgeons/neurology center in the country.   First , the Mayo Clinic, In Minnesota. My appointment is March 6.  Second, Dr. Speltzer, at Barrow Neurology center; he is known to be one of the , if not THE best neurosurgeon in the world. Third, a neurosurgeon at Hopkins, Maryland.  I dont know who is going to view my Scans there, but all those opinions wont hurt.
When I saw my neurosurgeon 2 weeks ago, he was mostly positive. I just felt like he is not saying much.  He first told me things looked good, then said “if it bleeds again, i will try to convince you to do surgery”. He never said surgery was an option before. He actually said it was inoperable. I just felt like there was something he was not telling me. I later found out that “calm” cavernoma is very normal right after a bleed, and a lot of time, it only means it will bleed again soon enough. Anyway, I still take it on the positive side.  Of course i hope i never have to think of choosing to go thru with brain surgery.

I seriously dont know if i’ll have the support I need.  People mean well, but I always felt pretty invisible when I was in need.  Might as well go live in a cave by myself.  I guess I am not the type of person people are eager to “serve”, even when in need.  Probably because im usually the servant and ironically enjoy doing so. I never get burdened when friends need help. I am very happy to help and never think twice about it.  I think my problem is not that i dont have support, is because i dont ask. hahaha

I guess im feeling down tonight uh?!  Oh well, cant be perfect
I am excited to know more about this. I feel like i’ll be able to move on better.  I dont wake up thinking of all this, and I dont go to sleep thinking about this, but lately, the thought of surgery scare me some.  There are so many things that can go wrong in a  brain stem surgery…. its ridiculous.  Anything can happen, Anything! Its scary…. BUT, i dont stay scared long. I chose not to go there.

Did I tell you I lost 27 pounds?  I did, and im really happy… I feel so much better about myself.  Now, Jay keeps telling me , jokingly, that im too skinny.  He doesn’t realize it, but it makes me insecure… haha I want to please him, and he used to joke about me being chubby, and now im too skinny… am i ever going to be just right?

Anyhow, I am so so blessed to have friends that cared enough about me to inquire for me…. it really shows you who really care about you. Who thinks you are worth the effort and time!  I am blessed to have them.  Not a lot of people have the chance to get 3 specialists opinions like I will be getting.

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