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