Prom! Anaflatic shock! Cat pics! Oh my!

  Hey there!

Well it's been awhile, and LOTS has happened.

A few weeks ago, we decided to try IVIG. Again on an inpatient basis.  We had the first does overnight Thursday, it went fine.  Second does started Friday afternoon and I had an anaflatic reaction and coded.  They intubated me up on 6th floor before taking me down to 3 (picu) were I would stay tell Sunday night.  Very scary.  After a sleep study and a ct (still waiting on results) we were let home Monday.  

Since things have gone back to "normal".  I do not have much energy,  certainly not how I expected to spend my last few weeks of high school... But as dr. K says, illness does not always choose convenient times. Grr.  Oh well.

Next thing is we met with gi.  I have an empting study on Wednesday, we also ran bloods and stool samples. Fun stuff lol. 

Lots of other appointments but I'm tired and won't go into that. 

Oh hey look I figured out how to add photos

Is that a prom pic?!? YES! It happened a week before the ivig disaster.  Soo soo soo good. :)

ARNIE!

Zombie Arnie! 

Ok I'm done now :) gonna go make a s'more over the stove and watch doctor who. Maybe some homework... 

<3 hannah

Set back. and prom.

  Hey y'all

Well today was icky.  Started out with early clinic. 

Then school for a few hours.  At the end of the day mom got a call from nuro saying we are going to stop ivig.  Even though the reaction I had was mild, we can't risk a more serious reaction. 

He is out of town at a conference but will be back early next week, so we will talk about what's next then.

That's we're we are today. 

Also prom is on Saturday. 

<3 Hannah

I have a case of the Mondays

  Hey y'all

So today was loong.  We headed to the infusion center bright and early this moring.  I started out like it did last time, about a halve an hour of per meds then ivig starts.  

Unlike last Time I had a reaction, just hives, but it could have gotten worse so it was taken very seriously.  We held the ivig and got MORE bynedril then they called the on call nuro guy to come see me as mine is out of town.  Hey decided not to finish the dose today, and as the hives went away after awhile (and stayed away) I was alowed to go home later this afternoon. 

They emailed my doc to see what he wants to do.  It may just be more per meds and a slower run time or something else, we'll just have to wait and see. 

Tomorrow I have clinic at the other hospital.

Fuuuun stuf :)

More when there is more.

<3 Hannah 

We walk by faith, not by sight

  Hey y'all,

So after meeting with the nurologist on Monday, we have desided to take a more 'aggressive' action against my mg.  I have started ivig infusions and steroid pills.  We started the steroids on a very high dose with hopes that maybe in a few months we will be able to start going down.  These meds have very icky side effects including changing appericance, bad headache, muscle acke and tiredness.  Those are the ones I've had so far, I'm sure there are more lol. 

So not really were we wanted to be, but hopefully this will start to work soon!  I just want to get back to playing tuba, as I have not had the strength to in a few weeks.  Another lame fact Is that I have a dose of ivig the day before prom :P oh well, what are ya gonna do? 

So I guess it could be worse, we are lucky to do these infusions outpatient.  I could be in a worse boat, but not gonna lie this boat feels pretty crummy right now.

In church today we sang a hymn,  we walk with faith not by sight. Sooo true this week.  Not sure we're we are headed just yet, but I'm sure it will all work out.

<3 Hannah

emg and such and such

hey y'all

its been a wile!

i had the emg under sedation last tuesday.  it did conferm the dx of MG.  it also showed a chance that i may be going into remmission, were the disease goes inactive for a period of time (or forever).

we were cautional optimistic.

untell wednesday when things started to go downhill.  i am in a bad mg flare and its no fun.  i see the neurologist on monday.

thats all for now.
hannah

woohoo!

i may still have a cold, but i just got cleared for my EMG next tuesday!

as well as the pre op we had regular clinic and PFT

thats 3 different hosptials/clinics in one day... thank you grandpa for driving me some before dad could come.

we did 3 different PFTs today
1. the one we always do, with and without albuteral
2. mip/mep to test diaphram strenght- came back on the low to middle range, got very tired towards the end, witch was noted and we need to tell the neurologist about
3. we tested the oxygen and carbon dioxide exchange witch came back normal.

now we start weaning from mestinon, to be off by sunday morning so that i have 2 days off before!

and now we wait and pray!

happy easter,
<3 hannah

april 2ed is fast approaching

hi y'all!

hope your having a stellar day!
im not so much a i seemed to have caught a bad bug.  blaaaa.  lots of cuddles with cats so thats good.

on april 2ed i have an EMG under sedation, after witch we will be looking a 'direction'.  hopefully we will get a conferemed dx of MG.

but in order to be put under i need to be rid of this cough

on friday of this week i have some PFTs and pre op as well as clinic

also liz is headed of to CANADA for a big ski race. good luck liz!

thats all for today!
<3 hannah

ps happy almost easter!
i won't be able to play tuba at church this year because i will be weaning from mention for my EMG.

also i just got back from the school band trip with my momma, super fun!
and the snow is melting, mixed feelings about that but everyone else seems happy :)

-hannnah

Healing helpers, beads, moa, spring break, Colorado and junior Olympics! Oh my it's been awhile!

Hi y'all!

Hopfully this post find you well and happy and loved :)

1. Healing helpers

healing helpers is a wonderfully family business that takes a stuffed animal and turns it into a medical doll.  You can find them here. I had a cow made with all my scars, his name is hammy and he's really cute!

here he his before his surgery...

and after...

him and i together...

2. Beads/ moa

i got to meat another wonderful beads of courage artist julie this weekend at the mall of america!!  she was lovely and super nice :)

unfortunetly i do not have a picture :(

3. Spring break /Colorado/junior Olympics

last week was spring break for elizabeths big ski race in winter park colorado
she qualified for the jounoir olympics! great job!! she did ok for the first 3 days, but on the last day she did really well and got 4th place!

we had ordered a set of team beads of courage to be sent to the hotel and they got there the night before the last race

4. 1 YEAR ANOVERIDY (spelling I know :P )
of this blog

5. The other side of my life.

i have big EMG under sedation, this will hopefully decided the best way to go with treatment and conferm diagnosis

i think thats it.

sorry this took so long, safari kept quitting on me,  also does anyone blog from iPad?  are there any good apps or ways to do it on the iPad?

<3
hannah

Yucky!

Bladder and kidney infection, hoping these meds start working soon! I've been in bed all day

<3 Hannah

Happy Presidents' Day!

Hi y'all

Lots going on here in mn!

First - our Alaskan malamute (akela) has started to Shed his winter coat! This means spring is coming (although the weather forecast does not seem to thing so)
It also means we have dog hair EVERYWHERE ahhhhhhhhhhhhhhh
It's really fluffy
But everywhere
I love our doggies :)

Second - I had been saving my pennies to get a iPad.  I can make all the text on it large so it's really good for my vision loss, I am able to read books and I can SEE what I am writing on my blog :)
I've had it since Saturday and we are inseparable! With the fm system and now this school will be soooo much better.

Third - I had pulmonolgy today... It lasted a lot longer than we thought it was gonna!
Started out with a basic PFT, the a basic with albuteral
Then we went back to see the doc
And she wanted a mif-muf PFT (don't quote me on the name...)
Basically, it's you blow into a device that measures your pulmonary muscles, then you switch so that your breathing in against it.

And just like my first basic PFT, my results were not accurate because PFT's take practice lol
My results looked like a "dead person" (I guess I forgot to tell them I am a zombie...)

My doc said that its normal and I'm going back in a month to repeat it

Third - I put in another order for beads! Can't wait!!!

Last but certainly not least - HEALING HELPERS!  I am sending in my sir hammy (stuffed cow) to get cute little surgeries just like mine! Then he will come back to me and we shall cuddle.

Check out healing helpers here - http://www.healinghelpers147.com/
Or here - https://www.facebook.com/healinghelpers?ref=ts&fref=ts

I will post before and after pictures 
I'm so blessed!
That's all for now! More when there is more,
<3 Hannah

hearing!!

hi y'all

hannah here with some cool news, i just got my school issued FM hearing system!!

how it works-
i pick up my hearing aid and microphone at the start of the day from the nurses office
then i give the microphone to my teacher

the microphone picks up only the teachers voice and sends it to my hearing aid peace (they are just recivers not true hearing aids as it was decided that true hearing aids would further harm my hearing)

at the end of class i take it from the teacher and give it to the next.

then at the end of the day i return them to there box in the nurses office

i also will meet with a hearing teacher every week


this will really help in class - we are working with our insurance compony to get a pair that i own so i could take them out of school and use them all the time, but that is taking a while so we just went with this tell we can get that moving.


wow i can hear things
so cool


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

in other news
1. we saw lady gaga on wednesday.  greatest. thing. ever.
2. we had skiing sections on wednesday (wednesday was loooong!) and that was fun i got 42ed out of 156 racers
3. i have 2 tuba concerts coming up



and back to the other side of my life,  big appointments start off next week with dermatology, phulomology, neurology, othimology and audiology.


i have an EMG under sedation on april 2ed


that should be everything

hope y'all are having a healthy start to 2013!

<3 hannah

merry christmas, happy new year, and welcome to minnesota winter!

hi y'all!

things seem to be finally getting back to normal after the holidays!

we had a lovely christmas.  i was scheduled to play tuba on christmas eve but had some sort of neurological episode (more on that later).  our family from the UK came to visit for christmas and for my cousin Lindsey's wedding.  it was a lot of fun with really good food.

skiing is now in full swing, my high school team has had 3 races so far.  Lizzy has gone to about 4 USSA races this season- she's still working through changing equipment so hopefully she will be back to be a super star racer soon (not that she's not one now, she's just a superstar without any hardware :)

on the other side of my life, like previously mentioned i had an episode of weakness over the holidays.  that caused the need for a soon appointment with my neurologist.  that was on monday and was why i waited soooo long to write this lol.  we have decided to move to meds every 3 hours instead of 4.  we have also decided to move my next single fiber EMG of my face from this summer to sometime this month or next (still working on getting that set up) we will be doing this one under sedation.

lots more i could add to this, but those bridges will be crossed when we get there.


OH i almost forget, i am going to a BOC event at amplatz on friday, its called monster jam!  should be fun! keep an eye out for pictures

<3 hannah

hey y'all!!

sorry its been so long for an update...

lets see, first try ended (guess who got all a's)  and thus began college app season- so far i have been accepted to montana state with 2 scoloships- but montana is a loooong way from home and i have my eye set on the u of m twin cities, who i haven't heard from yet.

second tri is in full swing, taking a cooking class and thats fun,  and a hard english class thats a lot of work!!  my teachers this try only update grades once a week or take a long time to get things in the grade book so it looks like my grades are worse than the are... :)

on sunday the 9th we had my grandfathers memorial, but we also had a billiard here in mn so not many people came ( we think is was tom that sent the storm to keep people away :)

sense being CLEARED for alpine skiing, it has been going really well, having lots of fun and just taking it easy...

on the other side of my life
i have had many appointments/ tests related to my hearing loss and we have opted for a personal FM system that i will own (compared to the school owning it).  i wear hearing aid looking ear pieces that actually are just receivers and then i have a phone sized box thing that picks up the person thats wearing it and sends it to my ear pieces, that then put that sound into my head.  we chose this over hearing aids because it only amplifies what i am trying to listen to (teacher, parents at dinner in a restaurant )  it even has a group setting so that when i work in groups of 5 at school i can just put it on a desk and it will amplify only them.
we are on the road to getting them but it looks like jaunary some time (insurance needs to prior approve) and then friday i meet with the vision and hearing teachers at school to work some more accommodations so that school is not so hard.

but other than that stuff my other appointments aren't tell after the first of the year. :)
i also have a cold, no fun.  i am surprised i have been able to focus to type this... i could  not when i tried homework :)


5 DAYS TO CHRISTMAS!  can't wait.  I'm playing tuba at church on christmas eve :) :) :)

happy holidays,
<3 hannah

tuba Christmas

merry tuba Christmas!  for those of you that don't know, tuba christmas is an event were hundreds of tuba players gather to play christmas carols- there are lots of them all across the country and beond so google it to see if you can make a concert, its pretty cool!!!

then today... I went skiing.  YUP THAT MEANS I WAS CLEARED! we have ski practice with the team tomorrow so that will be fun :)


also the special hearing test came back looking normal!!! YAY!  so now were looking at other options besides amplifiers (hearing aids).  YAY!  they are all a lot cheaper and easier to manage :)
that appointment is tomorrow

we start a new tri tomorrow so that means all new classes...  but i ended with all 'a's first tri so that was wonderful :)

oh and tonight we had a girl scout camp planning meeting and it was really fun :0) can't wait for camp in january!!!

thats it, hope y'all are well!

<3 hannah

im backkkkkk!!!!

oh my, were to begin....

as some of you may know, my grandfather passed away 2 weeks ago today.
in all that madness, we took home his massive (160 pound) alsken malamute

get akela (gaps dog) and turbo (our dog) to get along was some feat, but its a lot better now :)  they get along when they want to.

we had a good time at my moms parents house with the large family (38 people i think?)  lots of fun :)

on the other side of my life, saw the eye doctor monday still no driving, starting drops again.  saw neologist last week, same old there.  had a CT (with contrast :P )
tomorrow we se doc sing to see if i can SKI (team starts thursday :) and also more shots!! eek i don't like that!!! LOL
then friday i have a special hearing nerve test and monday ill be fitted for my hearing aids.


ALSO I GOT MY OLYMPIC TEAM BEAD AND ITS SUPER COOL :)

thats all for now,  hopefully not to long tell the next one, but life is crazy so no promises :)

<3 hannah

have y'all seen this :) makes me smile

FRIDAY! YAY!!!

happy almost weekend!!!

today i have 2 appointments and then I'm gonna go sit with dad at his work :)

this weekend i have a MYS concert
i had a school concert last night and that went well :)

thats all for today

<3 hannah

happy election!

hope you all had fun voting, I'm not old enof but next year i can!!!

we have our bowling banquet tonight!!! that will be fun :)

and a band concert tomorrow
and then one on sunday as well.

on the other side of things, my doc still dose not think that i can ski :(


Yup! thats all for today :)

<3 hannah

hey there stranger!

its been awile, pops :)

halloween was sooooooo good.  and in true hannah fashion, i don't have the pics on me so it will be awile  (if you've been following for some time, you know that awile can mean up to 6 months lol)

but here are some london pics....

my cousin seb, waiting for the bikers to come by wile having fun on his bike

verena watching the olympics live!

Me at harry potter studio tours, this was olivanders wand shop, each and every box is hand painted!!! 

baby cousin charlet and aunty tory

USA pride at the olympic bike time trials,  the finnish was hampton court.  the house in the background is were i stayed

OLYMPICS! they went by sooo fast!

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

as far as life this week, school has been good.  bowling team just ended so now we just wait for skiing to start :) 

i have some appointments this week, the biggest being tuesday when the doc says if i can ski or not. 

ok! im gonna go back to beading and watching americas next to model.  because it is quality television that is worth my time. not. it s funny though!

<3 hannah

song

the end of MEA break

hi y'all,

for those that don't live in MN/dont know, every fall we get a 2-3 day break called MEA, that plus the weekend made a 5 day break!!  it was a lot of fun but i have school tomorrow :(

dad and i worked LOTS on halloween today, i also went to church witch was fun :)
saturday i had orchestra rehearsal
friday clinic and i toured u of m morris with mom and liz had 8 friends over (yes that is 8 7th graders!!! LOUD TO SAY THE LEAST!) and we took them to fright mares at buck hill witch was cool- the kids got in trouble for being to loud lol
thursday i build halloween decor
wednesday same as thursday + a bowling meet

i don't want to go to school tomorrow :P lol

10 days tell halloween!!! :)

<3 hannah

minnesota

you know you live in mn when you give the last remaining outlet to the heated mattress pad instead of your phone charger...

voting in COOKIES! a rant on the 2012 election

hi y'all!!!

life is CRAZY!  halloween being the most of it :)  have a looooong list of to dos before the 31st!

we have a 5 day weekend off of school!!! ya!!  I slept tell NOON today!!! :)

i have had a good couple of weeks. although my doc still won't sign the clearance form for skiing and i still can't drive :P

funny store;  on the way back from my music retreat, mom and i stopped at a bakery in red wing were we found that they were having a 'cookie election'  so we got to obama cookies and posted a pic of us with them to Facebook.  then the commenting started (just so we are clear on this, even though i can not vote this election, i have very strong views)

mary- you bought loser cookies...
me- :( well at least we did not buy 'you have to have your baby cause there is no other choose' cookies
me- or college dept cookies
me- or lets build more unnessisary tank cookies
me- or i hate the environment cookies
mom- wow. sounds like hannah has a strong opinion...
mary- wonder where she gets that from
mom- from her dad of course
mary- hannah, you should try the unnecessary tank cookies, they have nuts and chocolate chips, and are great!
mom- mary... dont egg the kid on...
verena- i am quite enjoying myself
misty- way to go hannah! you forgot the 'you cant vote because your 90 and don't hold a drivers license any more' cookie
me- well mary, at least the obama cookies are 47% off
mary- misty, you should try the 'i can vote 10 times because they don't ask for ID' brownies, they are 2 for 1.

this year in MN we are voting on voter registration as well as the marriage reform (VOTE NO!)

sorry.

man i wish i was 18

best election ever




some of my friends are 18 and can vote, but are not going to because 'there one vote won't matter'.
EVRY VOTE MAKES A DIFERENCE. IF YOU DO NOT VOTE, YOU HAVE NO RIGHT TO COMPLANE ABOUT ANYTHING.  this is YOUR chance to make a CHANGE! let your voice be heard, no matter what party you support!

to lighten the mood :)

14 days tell halloween
19 days tell the election!!!


ya! well thats about all at the kiresuk house!!!
we finally got the swamp monster up!! :)  yay  halloween!!!

<3 hannah

better day

hi y'all

yesterday was looooong but its over

today has started out well, i have much more energy than this time yesterday :)

time for school!

<3 hannah

well, i have a case of the mondays

hi y'all!!

i had a longgg day

had my eye appointment today,  it was very short.  there has been no change.  UGGG!  no driving.  still no answers and I'm going back in 6 weeks :P

but other than that today was good! had the day off of school,  worked on the halloween path, when to doc (ugh) went to the mall with mom, got choclet, went to the hair lady with mom, had a 2 hour nap there and then got sushi

the only bummer is that tomorrow is school :P  and then clinic, anddddd i need some shots :P

oh well

ok
thats all for today!!! I'm gonna go eat my choclet!

<3 hannah

sunday

hi y'all

this morning i talked with verena and went to the finish line of the metronic marathon!  i had fun but now i don't feel to well so I'm resting at home, mom liz and dad went out for lunch with our running buddies

hoping that i feel better so i can go work on the path and see a movie tonight (hotel traselvana)

tomorrow i go into to see my eye doctor.  we are hoping that my eyes have improved enof so that i can drive again!!!! hoping for the best

its a beady kinda sunday

arnie says hi!

<3 hannah & arnie

kinda a sappy saturday

hi y'all!

today was a long but good day, had orchestra rehearsal, senior pics and now I'm at my gpas house.

this week was fun, homecoming was really good.

on top of homecoming, i had many appointments.  I'm getting hearing aids, have the fitting in november  i also saw ENT, they did a scope (note mom did not tell me this was happening -_-)  but it was ok (they numbed up my nose and then put a camera stick down it- same path as an ng tube, but only to my mouth i got to see my vocal cords!), just a bit uncomfortable.  i have what they though i have and its easy to treat :) VCD/PVFM
i also had OT, looks like i will be in OT tell late december

next week i have my eye doctor, dr sing, reumatology, ot and dr chris

liz and i have monday off of school but i have docs :P

IN EXTREMLY EXSITING NEWS (lol soooo many spelling erors) MY DOCTOR AND I WERE SELECTED TO RECIVE A TEAM BEAD CARRIED BY AN OLYMPIAN!!! i got the email today.  how that worked was i wrote a short nonimation on how my doc shows olyimpic spirt with my care <3 they got reviewed and we were chosen :)

so today has been good!
annnnnnddddd SNL is on tonight- I'm tired and won't be staying up for it but ill watch it tomorrow :)

thats all for today!!
<3 hannah

HOMECOMING WEEK!!!

hi y'all.... it the first week of october witch means one thing...
HOMECOMING!

today was toga tuseday, so fun. so fun.

unfortunetly i had to leave early to go to the audiologist



after lots of tests it was decided that i need hearing aids!
(its ok, they come in pink... lol)

I've been addicted to this video...
gangnam style

:)


have a great day!!
<3 hannah

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 :)

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

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!!!

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

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!!!)

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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

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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

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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 :)

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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

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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

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

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 :(
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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