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anyone else have this long of a list?

Mar 05, 2013 - 2 comments
Tags:

chiari malformation

,

hospital stay



wow! so many people keep telling me, "have your mom call me when you get out of surgery!" just school staff alone i am up to like, 6 people! its nuts. people keep saying "will it be ok for me to visit?" and i keep telling them call first! if i am up to it sure. but if not you can always visit when i am feeling ready for visitors. i want to get some things to keep me busy at the hospital though. maybe a book or my portable dvd player and a couple movies. dont want to bring too much!

the big day is getting closer

Mar 04, 2013 - 4 comments
Tags:

chiari malformation

,

surgery

,

preparation



so, everything is confirmed. dates are set. where i am staying for recoup is set. the only thing that i have to stress about is how to get to my surgery. my dad is no help. the school is going to try and convince him to bring me but i doubt that will get anywhere. a teacher of mine has a "devious, diabolical plan" that i hope means that she has by some miracle, found a way around the rules to be able to bring me. i go home this weekend to bring a big bulk of my things to my dads. then back for 2 days and the night of the 12th i leave on my MSWR and bring the rest of my things. pack everything ill need on cape (should probably start making a list) call my pcp to send my prescriptions to cvs on cape, and try and convince my dad to at LEAST mail my concerta script so i have that on cape. wow, until i wrote this entry i didnt realize how much i actually had to do! hopefully, these 8 weeks will go by fast. that way i can come back, graduate, and maybe get a job so i can get a car, an apartment, and hopefully even start college. This girl is on a mission!

its nice to have some support

Mar 01, 2013 - 0 comments
Tags:

chiari malformation

,

support

,

surgery



sure im getting virtually NONE from my father but my mom, my 83 year old grandmother, and my 60 year old aunt are driving 2 1/2 hours up to boston so they can be there for my surgery. also my moms ex-husband (i call him daddy. hes raised me since i was 7) and his daughter (my sister heather. no blood relation but we grew up together) are also driving 2 1/2 hrs to boston to be with me. at least my family on Cape Cod care. im actually going down to cape to recouperate.
my school and friends here have also been insanely supportive. my counselor has brought me to a good 50% of my appts, and the school transportation brought me to the other 50%. they are even trying to find me a ride TOO my surgery since my dad wont bring me. i mean if worst comes to worst ill just take the train. but id rather not lug 2 suitcases on the T in boston for 98 minutes! im praying for a ride to my surgery though. im nervous enough without having to worry about being mugged, having enough money, or taking the wrong train!

dont you just LOVE people?

Feb 28, 2013 - 0 comments
Tags:

Chiari



i swear, i cant do anything right lately. first, when i asked my dad if he could take me to my surgery, he said "I work. take the train." really? your kid is having a major surgery done and you cant even take a day off?
then, i was reprimanded for "giving out too much information" about what is going on with me. all i do is answer questions when people ask. its not like i have a sign saying, "hey! i have a brain disease! ask me about it!". im not bragging about it, i dont even bring it up. the most ive ever really said was "uh, feels like another sick day." people on the outside dont understand. they dont get the position you are put in when people have all these questions about why you have no balance, why you cant do certain things anymore. and im fine with answering questions. it gets awareness out there about chiari, but i hate being reprimanded about nothing.