TODAY IS THE DAY!

my plane leaves msp at 945pm and gets into hethrow at noon london time!!!!


i can't believe it!
jkahsfdohfjasdbfjkashfdijas!

today

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in other less existing news, my scopes are planed for the tuseday before school starts.
we are also trying to get the emg on the same day so i don't have to be put under again
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back to london.

IM GOING TO THE HARRY POTTER STUDIO TOUR!!! ASOHFAJHFIUADHFIUADHFIASHDFUAIDHF

NEXT POST FROM LONDON

<3HANNAH

2 days to london!!

kadsfjhkashfjakshfdjaksdhfji!!! can't wait!!! we got tickets for the harry potter studio tour!!!

today is also DQ mirical treat day!! go get a blizzard and support your local children's hospital!! 

today i met with the GI doc and were gonna do an endoscpoy and a colonoscopy when i get back. they also ran blood work today.

and tuesday i met with my MG doc and were not making any changes before london 

AND TODAY I TOOK A BEAD MAKING LESSON ill post more on that when i get the beads back from the kilm so there will be pictures!!!  gonna send some to BOC!!

sorry for the rambley post!

<3 hannah

sappy saturday... ELCA youth gathering version!!!!

last monday, i headed to my church and got on the bus to make the 26 hour trip from minnesota to new orleans of the ELCA (evangelical lutheran church of america) national youth gathering.

i had gone in 2009 and it was life changing

despite many buss issues on the way down, we made it there by tuseday afternoon.  we were assigned a very VERY nice hotel just across from the super dome were evening worship takes place

tuesday night- dinner with the youth group
wednesday- spent expiring NOLA, i ate an oyster!!!
wednesday night- opening 'dome' (dome is a MASSIVE church service/ worship- 34,000 lutheran teenagers!!)
thursday- we headed to the convention center for a morning of worship and a day of exploring the convention
thursday night- dome
friday- our day of service, we weeded at a local park...  it flashed flooded!! 6in of rain an hour!!! crazy but fun!!!
friday night- dome
saturday-  morning worship then bible study, then in the afternoon we went exploring more!!!
saturday nigh- dome
sunday morning- worship
then we loaded buses and headed home... but we had A TON of mechanical problems and lots of delays!!! i won't go into that hole drama!!!

more about the dome...
its a teenage friendly worship with 34,000 other people!! these things are massive!! they are filled with music, speakers, sermons, more music, more speakers and a BIG finish

here is a speaker
a highlight video from the gathering


overall i had a great time!!!

music from the gathering

<3 hannah

ps i had some docs today, ill post about that tomorrow!

home!

we made it, after 30 hours on a bus!!!

I'm back on my computer now so there will be more posts this week.


im planing on a sappy saturday tomorrow about new orleans so watch for that :)

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look!! I'm famous:)
part 2, thanks mallory!!

anddddd pictures of boc beads being donated in honor of my birthday are rolling in!!! here are a few

look how cute!!! they will make some big smiles!!! 

i have a big week ahead of doctors ahead of me getting ready for london, so I'm gonna take a nap!

see y'all tomorrow!!

-hannah

Made it!

I'm in new Orleans!!! Ya!!! It's very hot here!!! I can't wait for the confrence to start!!! Mom, Matt (my youth director)and I worked hard to make arrangements for me to be as indepent as posible, but we did plan on the hotel being an issue... It's huge!! Ive already fallen behind and got lost! So were gonna make another plan. Oh and go check out Mallory's blog (I'm featured!!!) sorry I can't link I'm on my phone :( That's all for today! -hannah

home!!!

hi y'all

sorry there have been few posts this week... mom and i just got back from coloardo!!!  then i leave for new orleans with church tomorrow morning!!!

doing some quick laundry and making hannah friendly foods for the bus :)


we had a bit of drama at the airport this afternoon and ended up in first class!!!

ill be gone for a week, so limited posts this week to (sorry!)

then the week after is full of doctors getting ready for my big london trip!!! CANT WAIT!!!

annnddd i got my new medi id bracelet :) its pink!!!

AND TOMORROW CHECK this out WHEN I AM FEATURED ON MALLORYS BLOG!!!
it is a 2 day event so check back then to!!!

thats all for tonight!!!

song- getting in the mood for new orleans!!!

<3 hannah

birthday hangover

today was a long day of getting ready for tomorrow when mom and i head to denver!

i got up and showered and washed a bunch of cloths

then we saw the eye doctor- he put me back on the drops (LAME) and says that surgery can wait or maybe not even happen!!!

then we had clinic

then we had doc sing and we talked about my belly and when i get back from london i will see a new doctor

then i packed the cloths i washed
and now i am SUPER tired, and can't spell apparently... LOL

so im gonna go to bed

<3 hannah

ps if you are a bead artist participating in the bead challenge... can't wait to see them!!! :)

OH AND ALSO WE GOT MY CT RESULTS BACK!!! M THYMUS IS NORMAL!!!! YAY! but they noticed something else... not gonna worry about that now, she said its not that big of a deal and ill meet with my mg doctor we will talk about it :)

happy :)

IM 17!!!!!!!

TODAY IS MY BIRTHDAY!!!

i had a great day!!!  i had breakfast with gpa, spent WAY to much time playing tetris and watched 16 and pregnant (don't judge... its addicting!)
then we went out to eat at joes crab shack! lots of fun!!!!


i really don't feel much older...



i had some belly pain today though :(
------------------------------------------------------------------------------------------------
back to birthday...

if you want to help me celebrate, donate to beads of courage :)

if your a glass artist head over here to participate in a birthday related glass challenge!

ill post pictures tomorrow :0)

<3 hannah

monday...

todays goal is to get ready for trips but my bed is warm and cosy....

TOMORROW IS MY BIRTHDAY!!!

thats all for today!

<3 hannah

sappy saturday!

i woke up today and relized it was sunday... opps...

i don't have a theme for today... so beads!!!

on some of my boc necklaces i 'feature' a bead.  most of the time i put a charm in the middle of the string and put both ends of the string back through the bead, then string the rest on the strings separately, but today i got creative and put the bead on the string then tied both ends, and strung the rest of the beads.

then the string was to lose so i tied more around the bead.



this post makes NO sense.  oh well, i gave a noble effort... to be fair it is 10:50pm and if you know me, i lose my ability to think at 9...

<3 hannah

birthday!!!

not yet, tuesday!!!

tomorrow is dedicated to getting my meds set for my 2 trips (i have less than 12 hours turnaround from getting back from denver and leaving for new orleans)
gotta figure out what cloths to bring
get some music for the trips
earn lots of beads on wednesday when i hospital hop to 3 different hospitals!

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back to my birthday... if you want to help me celebrate, consider making a donation to beads of courage.

25 dollars pays for a kid in the distance program!
on the artist gallery website you can gift a bead that will be sent to a random BOC distance kid.
if your going on any adventures this summer carry a team bead!
BOC website for team beads and donations
gift a bead


if your a glass artist, send beads in to BOC :)
-17 beads (I'm turning 17)
-pink
-cats
-unicorns
-80's themed
-pink cats
-london olympics
bead donations

Beads of courage is a special program to me, you get a bead for every medical thing that happens to you.  the beads are a great way to communicate my journey with others.

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dad and i are going to go see the pirate exhibit at the science museum

thats all for today

<3 hannah

friday!

4 days tell my birthday!!! YAY!!! can't wait!!

and my june beads came today!!!

on another note... i had a ct today, the iv went in with out trouble and i have a bruse to show for it.  then i had clinic like every friday

did i mention I'm turning 17 on the 10th?

back on track... the blood test results are in.  he tested my IGA levels, witch has nothing to do with MG, and they are within normal range.
IGA is used for some autoimmune disorders, but its not disease specific.
mom (being a nurse, sorry Dr. kiresuk, np, dnp) looks at it and goes "why did he order that?"

anyways i have a bunch of appointments next week getting ready for my trips... also my birthday is next week!!!

thats all for today!
<3 hannah

ps my birthday is next week!!!!

feeling better now...

the swelling in my arm went down and my face feels like a face again.

the test involved him placing electrodes(like the ones from an EEG) then shocking me and measuring the muscles response.  he did that on my arm and my face.  then he stuck 3 needles in my arm and put electricity through them.  owie! he had to move them. OWIE!

it was ok though.  he said i did better than most adults  :)

this is me before they started shocking my face 

this is the bead i chose :)  amplatz hospital has BOC for the onco and bmt kids.  i brought some of my beads and the child life gal i was working with went and got a few courage beads for me to choose one (EMGs are not on the bead guide so you get a special bead + it was really hard and i was super brave!)  I've never gotten to chose my own before so it was fun picking it out!

unfortunately they are probably gonna do anther one when i get back from london, but it will be under sedation

tomorrow i have my ct! LAST NEEDLE OF THE WEEK! they better get in in on the first try...

and this evening we went to dairy queen, i brought a jug of dairy free ice cream on the wim that they would make me something with it AND THEY DID!!! made my day!!!

ok thats it, ill post tomorrow!

<3 hannah

an update

i had the EMG today.

it was amazingly painful.

but nothing abnormal.
he didn't do the muscles that are most effected.

so we just wait for the results of my blood test and see were we go from there.
I'm being started on a medication today and we will see if that helps.
he also talked some about doing more EMG with me sedated

then tomorrow i have  a chest ct.
-----------------------------------------------------------------------------------------------

in news besides MG i am still having a lot of pain in my belly.  i go in next week to discuss the plan from here for that.  

thats all for today.
<3 hannah

all done for the day

just got back from clinic.  have mixed feelings.  I'm happy because i think i am FINALY going to get a diagnosis, but sad at the same time.

they are running more tests, had a blood draw today, have some muscle exam on thursday (it sounds AUFUL!) and a chest CT (with contrast) on friday.

next week is busy to!!!

this is like a full time job!

<3 hannah

ps  clarification- grandma, mom wanted to write a post or two, not because i am to ill but just for fun!!!  (mom got a worried call)

beads- LOTS! ill figure it out later :)

being brave

today is the big day!

i know everything will be ok.  i know that this will be a small bump on the road and that ill go on my summer trips and have many adventures.

thats all.  ill post more later.

<3 hannah

song

tomorrow

1 pm

my mind is loud and butterflies have found a new home in my belly.

after that I'm going to a friends house to watch movies :)
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today anne took pictures of me for the thingy on mallory's blog!!! they looked really nice!!! thanks anne :)


im also eating cherries and watching true blood.  mom is working tonight (teaching from home on the computer) and dad and liz are at the batting cages so a quiet night for me.

i have to go to work with mom in the morning so it will be a LONG day for my (we have to be across town by 8 am)


ok thats it.

you are my sunshine

<3 hannah

dumbledore!

 “Happiness can be found in the darkest of times, if one only remembers to turn on the light.”

HAPPY SAPPY SATURDAY EVERYONE!!!

had a good talk with some friends last night, was not feeling well and was just sad in general.  
they made me feel better <3


my hands are tired so I'm just gonna post more dumbledore quotes....

 “It’s the unknown we fear when we look upon death and darkness, nothing more.” 

 “It is important to fight and fight again, and keep fighting, for only then can evil be kept at bay though never quite eradicated.”

“It does not do to dwell on dreams and forget to live.”

and lastly...
 “After all to the well organized mind, death is but the next great adventure.”

<3 hannah

song

wow im tired

not much to update on.  i feel misreable.  and weak.

earler i was doing better.  i went to the pool and relaxed in the water

and went to a movie.

i still hasn't hit me that this is happening.  they ran that test on the small chance i have it.

i get so weak so fast, very frustrating

i need tuseday

just needed to be reminded. he has a plan.

<3 hannah

ps mom may take over some posts if I'm tired

pss pray for london.  I have to go.  this will not get in the way

psss IM GONA BE ON MALLORYS BLOG!!! AYYAYAYAYAYA :)

getting to tuseday

tonight we went out as a family to eat, we had a gift card and it was really fun!!! nice to have some family time not at a clinic or a softball game...

the nurse from the clinic called me and we talked for a long time about what was going on.  we talked about my vision and belly issues and how it is related to this new thing i have.  she says that my body attacks the chemical that travels from the nerves to send the impulse to move my muscles.

MG affect every voluntary muscle: skeletal (hands, legs, arms...), it affects the muscles used to focus with eyes, it affects muscles used to talk, chew and smile.  it also affect the muscles used for breathing.  this can be very, very bad if those muscles get to fatigued.

she gave me things to do, rest helps. if i have problems breathing i am to lay down and use my inhalers IMEDENTLY.

because it affects the muscles that help you swallow food as well as the muscles that push food down your esophagus i have to be careful as to how much food i eat.  i can't eat a big meal because i could choke or it could get stuck.

she did not go into detail about treatment but it looks like a comination of meds, surgery and infusion therapy.  surgery would be on my eyes and a Thymectomy.  they will do a chest CT to check for thyoma because it is common in people with MG.

thats all the info i have right now.  just got to pray and wait for tuesday

<3 hannah

ps my hands are so tired from righting this... fast changes!!!

independence!!!

i called around and got an appointment with a doctor who specializes in the condition NEXT TUESDAY!

we are still getting my records sent over so we will be ready for next week to get our plan of attack.
i will get this under control!

<3 hannah

myasthenia gravis

a immune disorder.  causes muscle weakness.  effects the thymus.  thats all i know for now.

mom called my neurologist and he is leaving town and will call again on the 9th of july.


myasthenia gravis can have sever effects on the respiratory system. we need to get the ball rolling on this as soon as possible witch is why my thursday is dedicated to calling other doctors and seeing if i can get in sooner.  i want to have answers before i leave for london.

it looks like there are some ways (meds/surgery) to get it into remission so fingers crossed i can get an appointment soon!!!

ALSO THE RESULTS OF THE TEST FOR MG WERE BACK ALMOST A MONTH AGO!! WHY ARE WE JUST LEARNING ABOUT THIS NOW!!!
thats all for now

<3 a very stressed hannah

ps my phyc is gonna call tomorrow because i think i am losing my mind



i just needed some cute

positve

but not the good kind.

test results.

i tested postive for myesotesogravis (wow- spelling!!!)

its a muscle condition or something.  it would exsplane a lot (eyes, breathing, eating....)

i have to see a neurologist
(i just saw mine on monday- i was supost to go back in 6 months... well 2 days is close enof!)

ill post more when i know more
<3 hannah

sappy saturday. ya, i know its late...

i just been SO tired after camp!!! we had such a good time!

ok
sappy saturday- marching band
2 years ago i joined the robinsdale city band.  very fun!!
unfortunetly i got sick and never got to march in a parade... tell saturday!!

we were bowling shirts!!! 

and i got in to the repitory orchestra  for minnesota youth symphonies :)

AND MY ACT SCORE CAME... 26!!!!

i still have to take it again for the writing portion :P 26 anit shabby :)

and i ordered my beads yesterday

on another note i saw my neurologist, my keppra levels are low but he is not going to change anything

next week is FULL of BIG appointments (and my birthday...)

ok thats it!

song of the night!

<3 hannah

camp, eyes and more doctors!!!

camp has been great!!
we went swimming and it was very cold, but fun!!!

i saw the new eye doctor annnnd he thinks it is some sort of muscle spasm.  i am now wearing a patch, IM A PIRATE! i see him soon

then this evening i saw my primary care - they think that my belly pain may be related to some sort of reflux so i am on a new med for that, if it is not better in the next 2 weeks we take the "next step", but i think it will work :)

i also got my kepra level and liver levels checked and did my friday stuff (getting it over with :)

beads - LOTS!... my bead journal is across the room...

ok thats it!
<3 hannah

sappy saturday- girl scout camp!

YAY! finally!!!

i LOVE girl scout camp.
i go to a day camp, i am a caddie (a teenage leader)
i love it! its so so fun!! we hide our names and make the girls guess ( my camp name is weasley like from harry potter)

today was soooo sooo hot out!! my mom is the camp nurse and she had 2 heat stroke kids.
the water at camp has a iron taste to it and the kids don't want to drink it (city kids)
we used to do water dances, we would dance after they finished a bottle of water - but it got really old SOOOOOO..... this year i came up with camp beads (like beads of courage only WAY easier to earn)
they get a plastic bead for putting sunscreen on or drinking a water bottle or trying a new food.
there is a bead for a act of leadership, they are cool looking :) i picked them out!!! on the way out, i noticed on of the youngest girls had a leadership bead so i stopped to ask her what she go it for.  she put her hands on her hips and stood up tall and said "I picked up the trash"  it was to cute!!!

its handy having my mom as the camp nurse because she is there if i have an issue, like today when my sock rubbed of skin on the top of my foot (hey, it happens)
i also don't need to were my bracelet with my med info on it (that way i can keep my name hidden) :)



on another note mom, dad and i saw Rock of Ages yesterday and it was fantastic.
tomorrow i leave camp early with mom to go see the NEW neuro-othomologist and then head back to camp for the caddie sleepover, so i won't be able to update right after the doc visit.
i also have a doc vist on wednesday

ok thats it!!!
<3 hannah :)

GIRL SCOUT CAMP 2012!!!

soooo pumped... (more details when I'm feeling better)
also fathers day!!!

my daddy <3

ok
bed

night!
<3 hannah

.... what a pointless post

ps- i know, i slept through sappy saturday... lets make it sappy monday or wednesday when i have more time!!

friday!!! wooooooo!

SO happy this week is over!!! YAY!!!
next week is girl scout camp!!! YAY!!!
no doctors for 3 days!!! YAY!!!
i got In to see the neuro-othomologist NEXT TUESDAY!!! hopefully going to get some answers about my eyes
i don't know what a neuro-othomologist is but mom says that he will look at all my brain scans and medical history and see if he can put some ideas together

then on wednesday i see dr sing and we can hopefully get my belly pain under control!!!
thennnnnnn on friday i have a parade!!! I'm playing tuba in marching band!!! YAYAYAYAYAY

i got to play with a itty bitty kitten today- she made cute sqeeks :)
soooo cute!!!

ok thats it y'all!
se ya tomorrow!

<3 hannah

more info on whats happening to my eyes

this is what they looked liked when i woke up this morning

all my life i have had a common condition known as strabismus.
when i was in elementary school, i was not progressing as i should have been (in 4th grade, i could not read)  so my parents took me to see many doctors when it was decided that i had EXOTROPIA.  this condiron is usually found when the child is younger because parents can see that the eye is turned out.  because i was older, there was a greater chance that i could lose vision in one eye also the usual treatment of patching or to strong glasses did not work so we went to surgery.

i had my first surgery in the summer between 4th and 5th grade at the university of minnesota faview children's medical center
the surgery worked for about 5 years when my eye started turning out again, so i went to se a new dr, dr watenabie at the st paul eye clinic were he did the same surgery on my other eye

its been 5 years from the second surgery and now i am ESOTROPIC or my eye is turning in.  it is virtually unheard of to go from being exotrpic to esotropic.

the original idea was that i was having some sort of muscle spasm, but the treatments for that have not been working, so i got refered to someone else.

during the past month i have had MASIVE changes in my prescription, they show no sign of stoping.


soooo yup.

thats the deal with that

have a good saturday!
<3 hannah

that moment when you count how much medication went into your body... 45 total (that pills and breathing treatments and eye drops and supplements and liquid meds)

BLAAAAA

damn you eyes

went to see my eye doc today.  we though things were going very well, but my eyes had a different idea.

i have exsated all treatment options for my 'condition' (they have not given me an official dx)

i see him again in 2 weeks and being sent to a nuerothomologist for a second option/consult


thats all for now

<3 hannah

smoking

dont. ever. ever ever ever.

watch this

this is my new breathing treatment.  ignore the source fed thing (it was for a photo contest) 

i am EXTREMLY allergic to tobacco smoke.  

the mask makes it so that i get all of the medication i need.

i would't need it if it wasn't for smoke ( well to be fair i have a hard time around exsauset, the smell of gas at gas stations, perfumes, campfire smoke and everything else like that)

click this

and this

this to

one more- this ones the best

thank you cdc for working to keep me healthy and breathing!

when i am a around smoke, the bronki in my lungs swell completey shut.  this can be stopped by urgently using albuteral.  being 16, sometimes i forget to bring it everywhere i go, mistakes like that can be deadly for me. 

if you smoke,  quit. now.

if you don't smoke or used to smoke, THANK YOU THANK YOU!

if you are thinking of starting smoking, reread this blog post.

------------------------------------------------------------------------------------------

if you have not noticed yet, i am a HUGE anti smoking advocate!

if i see someone smoking on the street, i will not hesitate to request them to STOP!

one time in school, my teacher had just smoked, and he leaned across my desk and sent me into a coughing fit.  one should feel safe at school, that year, i didn't. 

<3 hannah

ps- i had a phulmonoy visit on monday- things are holding steady! i see my eye doc tomorrow

week of rest, finishing school and doctors

sorry that i lost track of this blog :( i had a loooong week. looong.  i had to go to school lots because it was the last week.  yesterday i had my act test and my minnesota youth symphonies audition. saturday was a loooong day.

last week i just had clinic on friday.

tomorrow i have an 830am PFT followed by a dr visit.
I'm getting levels checked and hopefully following up with my belly.
i also have eye doc on thursday

my belly hurts lots. so does my head. and my chest.

blaaaaa


on a good note, I've been getting lots of sleep :)


annnnnnnnnnnnnnnnnd my london beads came!!!
i super love them!! sorry mallory that i did not get back to you sooner! ill write an email tonight :)

ill post this weeks sappy saturday tomorrow


ok thats it.

<3 hannah

MEDI MONSTER MONDAY!

i got my medi-monster today!!!! yay yay yay!!!

 medi wears glasses

medi takes meds for her lungs to stay healthy

medi and i

look bifocals- i can only see out of the bottom of my glasses when looking at computer 

short medical update-

1. eyes - are doing better?

have more drops but he thinks they are helping

i go back in 2 weeks for that

2. belly - still giving me issues 

having problems eating/keeping food down and with urinating (look, i used a scientific word)

lots of pain still

3. leg - doing really good! i go in in 2 months for that visit

4. jaw - has been doing good, have my next check up in 3 months

5. lungs - FANTASIC! go back in 5 months

6. brian - hanging in there, have not had another seizure

on keppra and will be for 3 years

the latest mri showed a brain lesion witch they are not going to do anything about

i get my keppra levels checked next week (blood)

and i go back in 2 weeks

I'm sure that i am missing something, but whatever 

*please note- i did not see all of these doctors today- this is just kind of a round up for new readers :)

and i skyped with verena today :) i miss her sooo sooo much but will get to see her soon when i go to LONDON!!

3 good things today

1. skyped with verena
2. had soup and it is still in my belly
4. MY LONDON BEADS WERE SHIPED
5. MEDI CAME TODAY :)


*note i do notice the typo there... to funny to fix!!!

have a good night!
<3 hannah

london, london i can't wait for london.
gonna be so fun
i want july 28th to come now
london


mom left for a work week in washington dc
dad leaves on thursday


i don't have many 'big' appointments this week
have to keep working on eating


ok thats it!
<3 hannah

sappy saturday

i know, a day late- i feel asleep. sorry...

got my may beads today :) lots and lots of them!!!


friday night was graduation, and being a member of the band, i had to be there to play pomp for them.
going to graduation makes me think about what i am going to do after graduation.  2 years ago i would have said montana state university without hesitation! but there are a lot more things to consider now.  i want to leave home, and minnesota to ether montana state or ohio state... but i don't want to leave my family... or my doctors.  i know that i will be transferring to adult care soon for some of my care, but for my eyes, belly, lungs, jaw and brain i will stay with the same doctors forever.  for some i am on a 3 month visit and others 6 (well belly right now is like every week, same with eyes) so i could probably pull it off were i would see them when i come home for holidays.  or i could go to the university of minnesota and have all the health care one could ever need on campus.

lots of things that don't need an answer today

all i have to worry about now is my ACT test and my minnesota youth symphonies audition (the same day :P ) and finishing the last week of school and LONDON!



<3 hannah

EYES!!!

hi y'all!

i had my eye visit today, went well and was short!
the drops are helping and we are holding off of surgery.
that means that i am still doing drops. (LLLLLAAAAMMMMMEEE)
he also added prism stickers, I've had them before but never this strong.
the lady who put them on said they have lots of the kind i need because they rarely use them.
ill go back in to weeks

as far as my belly is concerned, i am in massive amounts of pain.
the past 2 days have been really, really bad
we are going to call the doctor tomorrow.
i did not eat much today, and what i did eat i saw again...

and besides that i have normal clinic tomorrow, just like every week

tomorrow is friday.  thank goodness.

3 good things
1. went into school to finish up tests
2. kitten cuddles
3. i got the notification that my beads were shipped (YAY)

<3 hannah

wednesday

did not go quite to plan.  i am in a lot of pain and eating is very difficult.

also some sad news, my friend abby relapsed shortly after finishing treatment, please send extra prayers for abby tonight.

also my friend jessi is having a hard time

i meet with my eye doctor tomorrow, please pray for my doctor to know what the best step from here is.

3 positve tings
1. I'm getting kitten cuddles
2. i got my yearbook
3. dad is chillin with me and thats nice, we are looking at the yearbook.

thats it

<3 hannah

sleeeeepy

my belly hurts.

have eye doc appointment tomorrow.
thats it.

<3 hannah

memorial day!!

a day to say thanks to all who have risked there lives helping others and standing up for a nation.  America would be no were with out its armed forces.

on the topic of memorial day there is one very neat boc project going on, its like team beads only with the army.  a army person is given 2 american flag beads to carry around will they do there army stuff.  then they give one of the flag beads to a kid in boc.  its neat because both are fighting in wars.

read about the flag bead (and cute baby jack)
send a flag bead

i just think that idea is so cool!!!

<3 hannah

have a good memorial day!!!

weekend!

1 day left, then back to the grind!!

excited to finish the AWUFUL eye drops!!! annnnnd we ordered my may beads on friday!!! I'm getting LOTS can't wait to string them and see how many i have!!

ok thats it, gonna go back to napping now :)

<3 hannah

sappy saturday

sappy Saturday is going to be a thing now :P

today i watched my FAVORITE movie 'the princes and the frog'

there are many reasons this is my favorite movie
1. the music- you just cannot beat new Orleans jazz :)
2. the animation, its beautiful!!!
3. Tiana (spelt wrong sorry). everything about her, sarcasm, cooking, family, friendships. she knew from an early age that you can't get every thing you wish for without work.  she works her tail off for that restaurant!
4. the theme.  i love how disney takes its usually idea of wishing on a star and just turns it around.  there is a scene were tiana is has yet another set back and her friend throughs a fit over something silly and wishes for it on a star and then she gets it right away, they made it look silly and unrealistic.  this movie gives me so much hope, yes wishing is the first step, then comes WORK! i wished to walk and getting there was not a walk through the park (no pun intended) i went to PT, i did PT at home, i worked and i worked and i worked and IT HURT!! but i did it!! I'm now running!! something doctors told me would never be a possibility!!!
look at tiana (SPOILER ALERT!!!) she got turned into a frog and back and still managed to achieve her goals! if she can do it, i can to. if she can do it we all can do it.  if you work hard you can do ANYTHING!
there may be pain along the way, but at some point the pain will stop

whats killing me with this belly stuff is that there is no work to be done, just rest and wait and see.
well i guess the work to be done is school work.  i really don't like homework, but hey Its better than needles!!!

<3 hannah

ALMOST THERE!!! (song of the night!)

beads= purple 2, white 1

night y'all!!

super cool

people from all over the world read my blog!!
as i am typing this, someone in russia is reading by blog!!!



comments are open to everyone, leave a comment of were your reading from!!!


soooo cool!!!
<3 hannah

friday friday going to the clinic on friday!

stop 1. get new lenses for my glasses
stop 2. children's for clinic
stop 3. u of m children's for prescription

we talked with the belly doctor and he says that the pain is not a bad thing and that it may mean my body is healing on its own, i have more pain meds and were gonna go back in a month to reassess what is going on!  sooo good news but bad news at the same time kinda.  i hate waiting.

NEXT THURSDAY AT 230 THE WAIT IS OVER FOR MY EYES.  it will be the big moment for truth to see if the drops worked and if i need surgery.  so ya, no stress there (heavy sarcasm)

3 good things today
1. i ate food!!!
2. MOM CAME HOME!!!
3. Im still pooping (eww i know but thats a good thing because it means I'm not getting constipated from pain meds)

beads= 2 blue, 1 rainbow, 1 white, 3 purple, 1 bumpy

ok thats it, bye y'all!

<3 hannah

labor day weekend! woo!!

4 days off to catch up on homework... ya!
and we get to see mara tonight

from the cough i had, i pulled my daiafram muscle and my ribs a sore and i have a tuba concert tonight.  joy. :)



one of my face beads broke today :(;(;(
so I've found a new way of keeping them so they won't break all the time
i put 100 beads on one strand and a clip at the end, so i can connect all of them and have it be really long or i can make them individual necklaces

I'm very proud of this idea
funny what hits you when your on pain meds


on a different note, my cousins in london have the chicken poxs :( hope they fell better soon (apparently in the uk they do not require the chicken pox shot to everyone )

i called my doctor for my belly pain, hopefully they will have more ideas.

<3 hannah

belly anddddd LONDON!!!!

well not london yet, but soon!!! july!

but my belly is very painful, having a hard time eating today.

london!!

<3 hannah

school, i came back!

only for halve a day, but still its something.

i also have act class tonight that i should go to...


But my belly hurts SO SO SO bad :(

<3 hannah

final post for today!

IMMMMM HOOOOOMMMMMEEEE
yes!... but my belly hurts lots :(

y'all should see my arm were they got the blood-its purple! she failed epicly!

and i had a urine test
and 2 ultra sounds

and now I'm home!


beads- 2 blue, 4 light green, 1 red, 1 black, 1 magenta, 1 aqua, 1 dark green, actually, i don't know.  i figure it to when I'm not on pain meds lol

<3 hannah

doctors, hospitals, appendixes, ovarys and cysts

well

i had a looooong day

1. waited on hold for 20 min to make doc visit
2. went to school to turn work in
3. went to doctor
4. he poked my belly. ouch.
5. blood test
6. urninalisisisisisis
7. lunch
8. head to amplatz hospital
9. WAIT FOREVER
10. have ultra sound
11. have another ultra sound
12. doc calls and says i have a cyst in my ovari
it will go away on its own

they gave me pain meds

we never even met this doctor, just talked to him on the phone
ok cool

have to go in next week to make sure it fell apart or something

nap time

beads- i have noooo clue, ill figure it out later

<3 hannah

taken care of business

after 20 min on hold i got in at 930 this morning

gonna get this pain kicked in the but so i can function again... :)



ok ill update later!

<3 hannah

sssuuuunnnnnddddaaaayyyy

its only been 1 week and I've already filled this months bead journal so i made one and now that one is almost filled as well lol

my belly pain is getting REALLY bad
I'm going to call my doc first thing tomorrow and se what she thinks
i also have to get my keppra levels checked this week :P


and clinic but thats every friday

that should be it for doctors this week




aww my kitten came to visit ( he says hi to all y'all)


it stormed last night- very loudly

wingman bead
it looks like I'm getting one!!! thanks Katie and Abby (YA ABBY IS DONE WITH CHEMO!!!)

YOU can sponsor a wingman beads for 5 dollars!!!
click here for that

3 good things today
1. kitten cuddles <3
2. almost done with school
3. WINGMAN BEAD :)

<3 hannah

sentimental saturday

hello all, hope you are having a nice weekend!!
i was gonna go for a walk but now the sky is dark and it suddenly got windy... sooo maybe later :)

i did get ahold of my mom, we talked this morning :)

i have been hit hard with a BAD cold.  i have been coughing so hard that it now hurts to breath because it is so painful.  i will be seeing my primary this eek to look at my belly, cold and the bump on my leg.

the eye drops have been really bad- its hard not to be upset when they need to go in, but i have to hold it together for my dad, who puts them in for me.

i see my eye doc not this week, but next - please pray that they are working!!!
if they do not work, i will have my 3erd eye surgery.

i have been doing a lot of school work to get caught up for the end of the year

i know that if my eyes don't get better, there will be no london
i HAFT to go to london.

anyways, now for the sentimental bit
my friend made this for me a wile ago <3
brave little emma

3 good things today
1. on the way up from the cold
2. i have faith
3. got all the work done that i needed to do today


same as the last song - only different *A MUST WATCH!!!

<3 hannah

any bead artists out there?

not cool body, not cool.

hi all.

painwize, today has been REALY bad.  and i can't take pain meds because they make my belly hurt more.  downward spiral of doom

i also cannot seem to get ahold of my mamma :(  she is always in meetings.
i just want to talk with her

on top of this i seem to have picked up a cold

i have clinic tomorrow

3 things
1. i love my cat
2. i have food to eat and a bed to sleep in
3. i have accsess to medical care

<3 hannah

its always darkest before the dawn

hellllo all

hope you had a decent day.  mine was sightly better than yesterday.  eye pain is bad and vision is low.  went to school for halve the day- grades are slooooowly climbing out of the gutter

i have not gotten to talk with mom today :( maybe later but i need to go to bed.

3 good things today
1. new modern family was funny
2.  arnie is suuuppppppeeeerrrr cute and i love him lots
3.  London is soon!!!

to tired to find a song

<3 hannah

hannah and the terrible horrible no good very bad start of the week

heeeellllloooo alllll

hooooppppppeeeee yoooooouuuuuu hhhhhhaaaaddddd aaaaa ssssuuuupppperrrrrr wwwweeeeekkkkkeeennndddd!

i did, but mom left on a work trip and won't be back for 2 weeks

only 3 weeks left of school

school was hard the past 2 days because my eyes hurt a lot and that is nooooo fun.

it makes class very difficult

on another note - my belly pain has been really bad - I'm thinking i may need to go in to see if it is many the keppra i started last week.

other than that it looks like i maybe appointment free tell friday ( i know right DONT JINSK IT!!! its like the first time in 3 months!!!)

i am going to try to list 3 positive things every day from now on :)

1.  my friends b day!!!

2.  umm... 3 weeks left of school!!!!

3. I GOT MORE BEADS YESTERDAY!!

photos? i think yes :)

i/we gave these photos to the kind people at the NEGU foundation that sent me a SUPER cool joy jar :)

there was a post a wile ago about my jar to... nope can't find it, but if you look hard enof you can find it!!!

ok well thats all for today

i have marching band now... thats gonna be GREAT for my headache (heavy sarcasm)

<3 hannah

song - for all you video game fans :)

HAPPY MOTHERS DAY TO ALL THE MOMS OUT THERE!!!

i love mothers day

i did order that bead for mom - it did not come in time :( its ok ill give it to when it gets here :)

i had a wonderful night last night :) we got burgers and watched movies :)

were gonna hang out tomorrow as well :)

tomorrow i start treatment for my eyes - right now i am legally blind (if there are spelling mistakes in this, I'm sorry but i can't see the keyboard)

the treatment will be painful and give me head aces, but its only 3 weeks.  if it does not work then i will go under the knife. sigh.

the rest of school will be hard.

we have a mothers day brunch, then i have a date!!!

<3 hannah

what a week

1. my cat ran away and came back
2. i have a lesion on my brain
3. vision is now -14.5
4. may need more surgery
5. i have a date tomorrow

gkdslgjsklgjklgjklsdgjf

tired!

<3 hannah

beads- blue 1, white 3, purple 3, light green 2, bumpy 1, glass 1 (brain boo boo)

song (a must watch)

he gives and takes away... and gives back

ARNIE CAME HOME!!! bless the stars!!!
during our 5am check, he was at the door!!

it may be a hidden blessing as he is walking better than ever!
i love him sooooo soooo much!!!

on an unhappy note, i have a long, painful sounding eye doctor visit today.  i will be getting the results of the testing they ran on me last week. blaaaaaaaaa.  do. not. want.  at all.

ok thats it.

<3 hannah
song

heart broken

my cat is missing.

please come back arnie.  i put out potato chips, felt and your favorite box.

please come home. i miss you so much.

my heart hurts.

:'(

SAPY STORY WARNING!!!

hello all,
hope you had a wonderful day! I did!!!
went to school and had clinic

last march, mom liz and i traveled out to winter park colorado so that i could ski with the adaptive race program there.  when we dropped liz off in denver- mom and i stopped to see a movie.  we saw soul surfer ( the movie were the surfer loses an arm and makes a comeback)

mom cried through the whole thing

the similarities were incredible

watching it know i am reminded of the hope that i had when i was skiing and the hope that was lost for walking.
the change sense coming to children's is amazing.  i now have hope for life.

now i am skiing on 2 skis and walking by myself.

thanks to all who have helped my leg heal.  now we can just wip the rest of my body to health, that would be great!

<3 hannah

beads blue 1 rainbow 1

senor skip day 2012

hi all

sitting here in a nearly empty class room. LOL
the monday after prom- no one bothered to show up!

i had a good weekend
had my surgaversory on saterday!!! was very fun! we had people over and had good food :)
then on sunday i got my gold award at this cerimoine thing
we got an email from one of our leaders that all the girls in our troop had to be there- then that leaders girl did not come... hmmm... lol

have doctors visits this week, don't know when though... although, eyes on thursday

<3 hannah

its late and my head hurts and i have clinic tomorrow

and i stayed home from school sick

and it looks like maybe the beads in space tour will come to mn. witch is suuuuuper cool.

and i slept all day

and now I'm not tired

and homework

and act

and mys audiotion

and headake

and i get to order my april beads on sunday

and i will have 2000

and thats a lot

and my arm hurts from needle yesterday

mostly i feel bad

i want england

and doctor who.

and a tardis.
a tardis would make all my problems go away.

now to get to galifray...

i think a trip to the comic book store tomorrow will help that need.



i don't think i will be going to school tomorrow


<3 hannah

long day. But mom comes home tomorrow!!!

HI all!

i had a long, hard, and painful day.
had clinic and a blood draw.  it did not go well. ouch.

beads
1 blue, 2 red, 1 aqua, 1 orange, i dark green and a bumpy.

<3 hannah

blood work tomorrow and STUPID EYES!

hello

this post comes from a very tired hannah
mom is still in cali
had another 3 hour dr visit
hgahahfahdfafhask
eyes have gone bisurk
being tested for a few things tomorrow
i see the eye guy next week again
my eyes hurt
my head hurts
im sooooo tired of this

STop POKING ME!

ok end rant

beads - blue 1, wight 3, purple 3, bumpy 1, light green 5, rainbow 1

ok good night

<3 hannah

US SKI TEAM

so as some of you know, my sis liz is a super star alpine skier.

that is here with her her hardware from the JOUNIOR OLIMPICs.

yup.  she's that cool.

anywayyyyy... she trains with Mat Strand 

i though how cool it would be if he carried team beads

i sent him an email with info on BOC and my story and how to join and such and this was his response (and in true hannah fashion, a few spelling mistakes as well :0)

Hi Hannah,

I would love to carry courage beads. I will send out an email this evening. 

You are a true inspiration, and are the definition of courage. 

Matt Strand

Sent from my iPhone

AWWWWWW! made my day, not easy to beat clean scans today :) <3

thats him being supper cool and stuff.

see ya tomorrow :)

NEVER EVER GIVE UP!

well... one more big one this week

i see my eye doc tomorrow

...sigh...

its only been 3 weeks

UGG!

come on body, hold it together!

<3 hannah

yay!!!

scans looked good :)

however, i did have a seizure so have to talk with some of my conductor (dr sing) about seizer medication- i have the script but 3 years!!!
we don't know
driving? nope

also one last big appointment tomorrow!!!

beads - 1 blue

<3 hannah

bord

updated bead count

1745


wow

the world could slow down now. please.

i feel like life is moving so fast.

monday is the day i get results of the scans- they are going to see what is going on and if it needs to be treated.  this is frustrating because seizures are a whole new realm for me.  i do not know what to expect or what treatment will be.

and then tuseday i see my eye doc to find out whats going on there.  that will most likely require further testing.

then a short break tell friday when i have therapies


ON A HAPPY NOTE I OFFISALY GRADUATED PT ON FRIDAY
i know i said that i did earlier - but you have to wait a month and go back in and so on and so forth.

also got a surpize boc package today- the beads that did not come in my last order :)
3 glass beads ( mostly seizure stuff) its nice going into monday with those.

on a sad note, no church tomorrow :( no ride so i can't go (liz has soft ball and they are droping mom off at the airport for her work trip)

oh mom leaves for california tomorrow ( she goes every 3 months) sense her work is based out of a university there.



song

<3 hannah

laaaaaaaazzzzzzyyyyyy saturday AND CAT PHOTO BOMB!

gonna work on gold award, go for a run down stairs and nothing else
:)

ok, cat pictures

there are some duplicates in there- YOUR WELCOME!!!



<3 hannah

ps song (for jessi)
song

eye-pocalips

have an eye appointment next tuseday- vision suddenly got VERY worse and blurry and double.

also have my neurology appointment on monday- going over scan results!!!

bla





AND WE BOUGHT THE ENGLAND TICKETS I LEAVE JULY 28TH AND COME BACK THE 18TH.

also my uncles house in england, the rode out front is the bicycle track for the olympics on the 30th.  
and verena has her ticket

so thats gonna happen

and the harry potter studio tour is now open so that will happen to


ya!



beads- wednesday 1 blue 1 rainbow, thursday 1 blue 1 rainbow, friday 1 blue 1 rainbow.


<3 hannah