my modern family

ever sense the first episode aired, my family has been addicted to the show modern family.  we now own every episode on our apple tv and every evening we sit together and watch them.  we've seen all of them multiple times and know them word for word, but they are still funny!!!

and tonight is the season premire!!! only 2 1/2 hours to go!!
can't wait!!


in other news, i have a bad cold and have been home sick from school :P

also homecoming is next week
and 5 doc appointments

the week after is crazy busy as well!!

thats all for today, have to go watch modern family now!!!
<3 hannah

beads i made!!!

look!!  the wight one is the first i made :)

these beads were sent off to boc and some other people as special gifts <3
i kept one for myself to :)

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on the other side, i had OT this week

it was my eval for restarting.  i am unfortynetly a lot weaker that last time i started OT :(  i start weekly therapy next week, they also want me to meat with PT again :( :(  

and they are talking about braces for my wrists 

thats it for this week, next week is quite to

but the week after is crazy!!! lots going on medically, hopefully it will all go well!!!

also could you pray for my grandpa tom, he is in the ICU and very sick

I think thats it, ill try to post more often ( london pictures?)

<3 hannah

GUESS WHO GOT INTO MONTANA STATE UNIVERSITY!!!

ME!!!

invisible illness awarness week

2. I was diagnosed with it in the year:
2011

3. But I had symptoms since:
2009

4. The biggest adjustment I’ve had to make is:
school

6. The hardest part about mornings are:
getting out of bed

7. My favorite medical TV show is:
hands down bosten med

8. A gadget I couldn’t live without is:
laptop!

9. The hardest part about nights are:
all the meds!

10. Each day I take __ pills & vitamins. (No comments, please)
lost count at 27

11. Regarding alternative treatments I:
have tried some... anything to make me better, but i WILL NOT go to a 'witch doctor'

12. If I had to choose between an invisible illness or visible I would choose:
i don't think my illnesses are that invisible, my skin and hair prove that

13. Regarding working and career:
school now, we'll cross the work bridge when we get there!

14. People would be surprised to know:

15. The hardest thing to accept about my new reality has been:
that there are going to be a lot of unanswered questions forever

16. Something I never thought I could do with my illness that I did was;
skiing!!! ENGLAND!

18. Something I really miss doing since I was diagnosed is:
running

19. It was really hard to have to give up:
arts school (spcpa)

20. A new hobby I have taken up since my diagnosis is:
beading and other arts!

21. If I could have one day of feeling normal again I would:
go on LOTS of roller coasters and eat ICE CREAM! and watch movies and be able to see them :)

22. My illness has taught me:
i can do ANYTHING!

23. Want to know a secret? One thing people say that gets under my skin is:
oh i have that to.

24. But I love it when people:
just sit, not talking, watching tv. preferably doctor who

25. My favorite motto, scripture, quote that gets me through tough times is:
NEVER EVER GIVE UP! negu!!

26. When someone is diagnosed I’d like to tell them:
NEGU!

27. Something that has surprised me about living with an illness is:
how many people like me are out there

28. The nicest thing someone did for me when I wasn’t feeling well was:
spend time with me

29. I’m involved with Invisible Illness Week because:sometime people don't 'believe me', they don't understand, there needs to be more awareness

30. The fact that you read this list makes me feel:

HAPPY!!! hopefully you have a better understanding about me :)

update!

hey y'all!

i saw dermatology today to talk about my hair loss

ick!!!

the back spot has some GROWTH its all soft and fussy 

she said that it is alopecia and started me on a BUNCH of medication, plus some for other skin stuff as well

the nurse that gave us the scrips says i get the award for the most scrips from one appointment!!

then i start OT again next week

and I see rumatology, adiology, ENT, GI, neurology... in the next month gotta keep healing!!!

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in other news...  my uncle finished an ironman triathlon this sunday!!! congrats eric!  

in his next one he has to raise money for a charity and he chose Beads of Courage in honor of me!!! :)  soooo cool!!

i think thats it for today!

<3 hannah

hey y'all

tomorrow the fan and i are headed to church, then to my gpa's then to lizzys ski thing at buck hill.

then this week i meet with dermatology to talk about my hair loss
we also got a letter with all the test results from my hospital stay, PATHOLOGY LOOKED GOOD! but some of my urin tests were a bit off

ok thats all for today!
<3 hannah

ps this week we start building the monsters for Hannah's Haunted Path 2012!!! I CANT WAIT FOR HALLOWEEN!!! its finely starting to feel like fall!!!

hi y'all!!!

sorry its been so long sense i last updated, we have been busy at the kiresuk house!

I (miraculesly) started being able to keep water down!!! then we tried food and that worked to!!!

i started school on wednesday and so far all is good

i started bowling team to and thats really fun!!  SENIOR YEAR!



so all looks good, i see lots of doctors but thats always how it been :P

<3 hannah

hospital

hi y'all

sorry for going so long with out an update
if you follow me on Facebook you know that i was in the hospital (I'm home now :)

we went in for my pre op and they were not happy with how much food/water i was keeping down so they sent me to the er
were they pumped me full of fluids (3 liters before i peed!)
the doc decided that i needed my scopes the next day so they put an NG tube in and started the cleanse (i was unable to keep the stuff down)
yesterday i went back in for the scopes... and they all looked good so no answers there :P we are still waiting for pathology
they kept me another night to see if i would feel better (the sleep medicine and i had a battle)

got sent home this evening
still not able to keep any food or water down so if i don't improve by saturday i will have to go back in.

thats just the bones of it.  there was a lot of needles, ng tube drama, vein misses, throwing up etc... current bead count from this 56


still feeling crummy but mom gets home tomorrow so that will be good

thats it for now, more when i have it

<3 hannah

surviving sickness: medical binder

a medical binder is something i think everyone should have, weather perfectly healthy or in and out of the hospital.

for awile, i was managing my medical needs but in these past to months it has become overwhelming and mom has stepped in to help.  the only problem was with 2 of us making appointments and talking to doctors we only had halve the story each
so i have taken some time (or actually lots of time) to put together a binder that we can take to doctors and put up coming appointments in as well as keep track of my medical history

here is what you will need

1 3 ring binder

2 sets of 8 tab binder deviders 

4 packets of the round hole support things

1 3 hole puncher

printer

knowledge of medical history

put the dividers in

on the first tab put EMERGENCY INFORMATION

on the next put CALENDER

then ER/ HOSPITALIZATIONS 

NOTES

MEDICATION

SCANS/TESTS/SURGERIES/PROCEDURES

SCHOOL

HEALTH SUMMARY

the next set is for all your doctors that you see (1 tab per doctor)

behind those you will put the appointment summaries (i get them in the mail from some and i have to ask for others)  keep the most current in front

in the school tab i put my 504 plan (school accommodations)

in the notes section, write down any questions you have for your doctors, then put the answers on them and move them to that doctors tab

put any discharge summaries in the er/hospitalizations tab

in the health summary tab be sure to put a list of family health history as well (they always ask about that) 

and ask your mom about your birth and her pregnesy (they always want to know what meds your mom was on when she was pregnant as well as when you hit milestones) 

as for mine, i like the staple brand binder, it travels around lots and has held together nicely 

be sure to put the donut support things on all your health records, they are the most important papers you will ever have!!!

even if you are not sick now, make one.  you don't know when that status will change and its easier to make one now then when you are sick!!! and if you are sick and you don't have one, but don't have time to put one together message me and i may be able to help (I've been thinking of putting together a kit on etsy that comes pre made all you have to do is add your own history)

i spent a LONG time making charts and pages 

they are all saved and i want to share them!!! message me and i can get them to you!!! 

keep your binder updated!!! 

hope this helped!

<3 hannah

sappy saturday: an overdo update and london wrap up!

hi y'all!  hope your having a happy end to you summer

i made it back from london in one piece, although joe biden stole our gate and we had to wait a hour and a half...
when i got home i was amazed with the amount of packages i had got!!! most were things that i made/ordered, on top of that i got a really nice package from mallory in her blog giveaway :)

on the other side of things i have been very tired (jet lag?) sense getting home.  i have been having fun at the fair, was there for almost 3 hours today 2012 record so far (will beat that next week when we see journey as a fam)

saw 1 doc last week and have 3 this week.  i find it ironic that i have my well child and my pre op in the same appointment
get it
because if your actually a well child
you would never need
and pre op
funny?
no?
ok.

ill get my hearing checked again and we will see if i fail it again, if i do we can get  refered to someone so that i can hear well again :)

i also see the eye doc


we have extended family birthdays tomorrow (mines in there!!!)

-----------------------------------------------------------------------------------------
surviving sickness

should be cool
tomorrow will be ether how to set up a medical binder OR covering a bald patch with class



also keep your eyes peeled for london pics :)

thats all!

-hannah

hi!!!

had a nice quiet day!!  only 2 days left here :(  tomorrow we are going to church and monday is dedicated to packing :)

i other news, wile combing my hair today i noticed a lot was coming off,  then 2 very big clumps came out
we were in a time crunch to get to a bbq so i just threw it in a pony
when we got back i combed it out, a lot came out but not as much as before then i found this

i guess it was a lot of hair that was coming out!!!

in this one you can see the thinning in my scalp

we don't know why the hair fell out, but my 'patch' is noticeable (i have a side part)  

when i get home i will see my GP and see what she thinks

ok thats it!

<3 hannah

yesterday

i went to the kew gardens!!! it was really nice!!

 and the day before that i went in to london and shopped and went to st pauls cathedral and then saw rock of ages with my uncle :)  were fun

i have hundreds of pictures, i have no way to load them on this computer so ill post some when i get home

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i leave early tuesday morning, so monday is dedicated to getting ready to go
and I'm just gonna hang around this weekend so yesterday was my last 'big' day here.

i also am not feeling super good today (belly)
if you remember last satureday, i am happy that i got to have all the adventures i did this week :)


thats it i think

<3 hannah

hannah, the Arachnophobic?

hello all!

i had a sick day today- nothing major, just a head ake and such

feeling better now

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so tonight as i was getting ready for bed, i saw it.  the spider.

now normally, i am fine with spiders at home.  at camp i thought it was odd that anyone could be sqimish around them, as they can not harm you.  mind you that these are the small, thin spiders of minnesota.

this spider was MASSIVE (this just happened, so i am exsaturating- it probably was like 2 in) and harry and it was just chillin in the corner, not doing much of anything.  but for some reason my heart beat really fast and my breathing quickened , tunnel vision the works.

so i got some tp, used socks on my hands as protective gear and grabbed a shoe.  i hit it like 10 times and it was still alive so i kept hitting it.  its legs just would't stop moving!!! ICK!

so thats todays story,  have you ever had something that your normally fine with caused you to panic like this???


lol bed time :)

also- postcards go out tomorrow so if you want to participate last minet in the 17 bead challenge and get a london post card- tonights it!!!

<3 hannah

the British Museum

hello all!!!

hope you are having a great start to your week!!!


i am doing lots better
mom called the doctor and he thinks its not what we thought it was (referring to saturday) but I'm gonna spend the rest of my trip having fun, if it is going to happen again, it will happen no matter where i am.

so today i went into london and saw the british museum, full to the brim of cool artifacts!! lots of fun!

i even met a fellow tuba player in the tube!!!

after my big day out my body is exsausted
but i ate SO much food at dinner (big smile) and it was because i was HUNGRY!!! not because i 'needed' to eat
but it still "hurt" to eat :P

i also stopped at a book shop and got some books on the war of roses, queen mary 1 (you know, the one that burned people :) and queen Elizabeth 1

ok, i think that is all!!!
<3 hannah

sunday!

hello all

hope you are having a superb sunday! i am feeling better than yesterday, but am still not myself.
its an odd feeling when you tell your body to move and it won't or it just goes really slowly.

yesterday was really scary, but i am glad that i am doing better :)

im am very sleepy and won't be staying up for the closing cerimonys :P so y'all will just have to watch it for me :)

i don't have any big plans tell wednesday so ill just be hanging round the house :)

its getting close to the end of my london adventures, i leave next tuesday =(  but on the other hand i miss home

ok thats it for today, IM OFF TO BED

LOL Caps lock (can you tell my hands are tired? :)

goodnight!
<3 hannah

sappy saturday- winser castle and ambulances

hi y'all

hope you are having a good day!!!

today started out on a good foot, we all got up had food and loaded the car for a fun day at the castle.
we parked about 4 streets away and waited 20 min to get passes in (witch we did not end up getting...)

...because i suddlenly lost control of my face (talking and swallowing) then the rest of me, and long story short because i am tired, i ended up in an ambulance, er and finally a room to myself.
i was discharged and am at home now :)

very frustrating and very embarising :(

also very scary as this had never happened
they are not sure what did happen.  at first they were gonna run a bunch of tests, but then i got a bit better and they said it could wait tell i get back home to the states. (yay)

they had called a few specialists (from oxford, only the best for me :)  and i have there number if anything else happens before i get home

on the plus side i don't think we will be charged for todays events as there is public health care here and they did not take much info from me :)

when they were gonna run the blood tests they gave me a numbing cream so i wouldn't feel the stick (i don't think they knew i get blood sticks a lot lol) i love those creams for IVs.  the cream is very effective as i still can't feel my arm (haha)  but it also burnt my skin its all red and uncomfortable

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

on the other side my 2 year old cousin LOVED seeing the ambulance and had lots of fun playing with the toys at the hospital :)

always makes me smile
ok im gonna go to bed now

i think ill have a better day tomorrow...
<3 hannah

london!!

hi y'all!!

having a wonderful time here!  i am relaxing and having a good time!
on sunday we are all going to windsor castle :) i am really looking forward to it!!!

then it sounds like i will be going into downtown london sometime this week to go to the national gallery :D

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

on different note, i got conformation that i will be volunteering at the mn state fair!!! i will be working in the agriculture building, bee section at the display frame!!!

ok i think that is all,
i have now been writing this post for 20min
lol

ok really done now
:)

<3 hannah

week 2 :)

i am having a GREAT time here!!!  my 2 little cousins are too cute!!!

we droped verena off at the airport yesterday :( that was hard, i don't know when i will get to see her again.
after that yesterday i stayed home and read a book i got on the 6 wives of henry the 8th :) my FAVORIT story of all time!

in not so happy news (besides verena leaving) i have gotten a uti :P its a lot better now though.

i also have been having nightmares about my upcoming tests, one of the things that has helped me is thinking of what beads i will get, and because the tests i will have are not on the usual bead guide, i will get a courage bead!  and because i spend way to much time on the internet i found this bead

and it is perfect. so this little guy is in the mail on the way to my house for me when i get back. then he will come with me to the hospital and make me smile when i feel bad from the sleep medicine :)

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

today we are going to the post office to send out the postcards that i wrote!

that all for now!

<3 hannah

hi y'all!

the 'london london LONDON' post was written yesterday, but the internet was spotty so it didt post

-------------------------------------------------------------------
today we watched the olympics LIVE from the front drive!! SO COOL!!!!!

i wore a big sparkly usa hat and a usa shirt and lots of usa flags :)

tomorrow verena and i head back into london!
we are going to get a pasty in the train station (yummy!)
then we will take the tube over to the 'london dungeon' witch is a historical haunted house (i know, I'm very confused but it looks like fun )

then we get lunch and head to the bus that will take us to...
THE HARRY POTTER STUDIO TOUR!

ajdfohadiofhaofhoadshfoia! i can't wait.  but i am very tired :) so I'm gonna go to bed early ( once the little ones settle down)


i have lots of pictures that i will post later ( i have no way to get them from the camera to computer)

HARRY POTTER

<3 hananh

london london LONDON!

I'm here (have been for a few days :)

had fun today with verena, we when into london and saw phantom of the opera and tower of london and olympic park

tomorrow we watch olympic byclicling so watch for us on the tv:)


i have lots and lots of pictures so

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

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

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 :)

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

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 :)
----------------------------------------------------------------------------

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