ho ho ho

(explanation for picture is somewhere below, I suck at adding pics in the right place apparantly. oops. Sue me.)

Christmas is officially 10 days away from today, nuts. Thanksgiving was quite the experience in the Bystry household this year. Since I decided (wisely) to live on a tropical island for about 5 years it was the first turkey day that I've been to with the family for that long.





Emily brought a guest. Emily has a new boyfriend. Emily brought a teenager. Emily is 28 years old, turning 29 in March. Emily is dating a FRICKEN 20 YEAR OLD BOY.





Ay yi yi that girl.





The chick calls me for guy advice, why? Who knows, it's proven she doesn't listen. Dork. Oh but wait I stand corrected, the dude left his teen years and is now 20, my bad. What a difference. Ya know, when people are in thier 30's and 40's it's not such a huge deal, but my sister was a freshman in highschool when this little guy was in kindegarten. Talk about a cougar. hah.





Now on to the outfit of choice.





It's always an interesting sight to see what Em will show up in, or lack there-of, literally. Her fashionable appearance was, and I'm not kidding, black corduroy pants with red flames going down the sides, a short black ruffled tube top under a see-through sequence black barely-there thing that tied in the back. her bra was showing, her boobage was showing, her belly was showing. OH and the make-up. For whatever reason struck her that morning, she felt the need to look like a washed out dracula with black bushy eyebrows. She had no make up on except for drawing in her thick eyebrows BLACK.... So, of course, I gave her another shirt I will never see again and I made her take that crap out of her eyebrows and I did a nice little make-over. I just realized I have no pictures on this blog at all, and I have a result of the finished product so maybe I'll insert it here....

Alright so it didn't work out the way I wanted it to but it's at the top of the page :) I'm not a pro with this blogging shit.

Moving on, christmas should be interesting, not sure if she's still with teenager turned 20, but he's a nice guy, I approve.

Pizza Pizza

Rage's birthday was an ultimate success! The night was awesome. I had to work until 4pm, Emily told the kids they were going to have a suprise guest joining them at Chuck E Cheese, she came and picked me up and after we found Rage going nuts in games he almost didn't notice me at first (i decided to bleach my black hair, ha) but he was stoked! "AUNT JESS!" I almost got plowed over with a big ol hug from Kohna, as normal she had to get a running start. Priceless moments it was great. Emilys a dork though when she came to pick me up from my studio she called to say she was outside, then I get out to see her in the passenger seat laughing her ass off... she hates driving. Maybe it's because she doesnt have her damn license yet, or maybe its because she still has temp plates on it (oh but she insists they are coming in the mail.. hahah full of shit that one is) So... who better to get in trouble driving the Astro van than yours truly. Geez.
Chuck E Cheese was awesome it's just as much fun for adults. Me and Em did this picture thing and i got in trouble because I was flicking off the screen when the picture was taken.. oops :) It was fun. I think the adults with our group used up more tokens than the kids. It was a nice group too, rage and kohnas dad Rusty was there, and he's a great guy. He brought in this insane Lego cake for everyone and I told the kids it was completely acceptable to smear frosting all over thier faces. It happenned. heh.
Days like that with my sister rock. We both went out later in the night, me in madison, her in monroe, and the nights both ended awesome. Of course we had to do the call the next morning thing and update each other. Gotta dig the girl talk. A new neighbor moved in next door to her and I think its going to be really nice, the guy went to highschool with us and Emily actually takes care of his dad (who's mentally disabled) at the place where she works. I've taken care of him too when I worked there. His name is Dexter and he's known to be the womanizer of the place. Always flirting. I miss that job it was so rewarding, the pay sucked but I made more in other ways really. It's a place called Greenco in monroe and it's an adult only day-time work environment for them, I started out there one summer with some highschool friends making bows part time to earn some extra cash, but I talked to the "clients" too much and was a "distraction" apparantly, but I was actually asked to be an aide to them, which was the coolest job EVER. Such genuine good-hearted people. Em used to work there before I did and it's where she's working again doing the same thing I did.
Leaves are falling the air is crisp and cool, and i'm OFF WORK today. Life is pretty ok :) Till next time...

remembering.

She's having a hard time doing that lately I guess. The progression is getting quicker and I'm trying to keep a good head about all this and not let it affect my emotions but this is getting so hard to think about.

I just got off the phone with our mom, it's her birthday! (63 awesome years.) I asked how Em was doing lately with things, and she told me about how there is post-its everywhere in her place.. she's labeling where the plates are, cups, what cabinet the food is stored in, everything... what's in the bathroom cabinets, where her kids things are.. she just can't remember on a daily basis anymore. My mom said she even has her phone number, address, and birthdays etc written down on the wall, which really is a good thing especially for the kids to have access to in case of an emergency.

I called up Emily after talking to Mom, she did her usual venting about guys inbetween cigarette breaths.. breakfast of champions? ick. Anywho, her and I don't really get emotional about things, we try to keep subjects like her disease on a casual level.

After talking to my momma I researched online about memory loss associated with Huntingtons and found out that they are testing a new drug, something that will of course also help with other memory-loss associated diseases. I'm really crossing my fingers that this will be something that becomes availible that she could have access to within the next couple of years.. check out the link

http://www.biotechdaily.com/?option=com_article&Itemid=294722640&cat=Therapeutics&ui=80068600&vrf=91224ea46e54cc4dfccd92c004ef84a4&end=%20

I made sure to have Em write down the names of the things being tested so that she can inquire with her Doc. She hasn't had major twitching yet but there was a drug just approved to help with the spasms, and if this other new one gets going soon, it will really help some of the main problems that arise with the development of what she has.

I don't know, it's all kind of taking a toll lately. To hear that my 28 year old sister needs to write on a piece of paper "Cups" and tape it to a cabinet was really just hard to hear.

On a happier note- next week is Rage's birthday. Emily really wants me to be a part of it, the feeling is totally mutual, so next saturday on his big day the whole troop of them are coming up to madison, I work until 4 but they are going to come and pick me up afterwards, and Em wants to make it a suprise that I'll be joining, so that's kinda cute. We're going to live it up at the zoo and Chuck E. Cheese :o) I can't wait..

Now for an ironic/funny part of the phone conversation... I was telling emily that I keep a notebook to write shit down in so that I don't forget, that she should too, and how she has a better excuse to forget crap than I do, then she said that she actually has a notebook too to help her remember things... but she doesnt know where she put it. (har har).

Getting to the middle.

This site offered a (very brief and not detailed) summary of the the main progression phases of Huntingtons Disease. http://www.hdsa.org/living-with-huntingtons/family-care/stages-of-hd.html

Here are the main points..

Stages of HD

Although symptoms of HD vary from person to person, even within the same family, the progression of the disease can be roughly divided into three stages.

Early Stage HD usually includes subtle changes in coordination, perhaps some involuntary movements (chorea), difficulty thinking through problems and often, a depressed or irritable mood. Medications are often effective in treating depression or other emotional problems. The effects of the disease may make the person less able to work at their customary level and less functional in their regular activities at home.

In the Middle Stage, the movement disorder may become more of a problem. Medication for chorea may be considered to provide relief from involuntary movement. Occupational and physical therapists may be needed to help maintain control of voluntary movements and to deal with changes in thinking and reasoning abilities. Diminished speech and difficulty swallowing may require help from a speech language pathologist. Ordinary activities will become harder to do.

In the Late Stage, the person with HD is totally dependent on others for their care. Choking becomes a major concern. Chorea may be severe or it may cease. At this stage, the person with HD can no longer walk and will be unable to speak. However, he or she is generally still able to comprehend language and retains an awareness of family and friends. When a person with HD dies, it is typically from complications of the disease, such as choking or infection and not from the disease itself.

Let's see them pearly whites..

Emily's are far from. My parents and I have noticed lately that it seems like her teeth are literally rotting away. Sure she did drugs in the past, and they didn't look like THIS.. I haven't said anything to her about it since I'm sure it's not something people would want pointed out. "Hey, your teeth look like shit!"... Yeah, I think it's not a compliment. I did some looking up online to see if this could be a part of the progression and I found a ton of sites and a lot of information. People with the disease have a hard time brushing and flossing, and tooth decay is present in all cases. She doesn't have dental insurance and I doubt she will get it. I'm sure she tries to take care of them, she's not a dirty lazy person who doesn't care about her personal things. She's a mom of three kids for goodness' sake, she's gotta take care of herself and the three little ones all on her own.

I really hate watching this all progress with her, it seems like more and more things are happening, new things. It's really starting to scare me to realize I'm going to lose my sister, and the kids wont have thier mom.

I'm glad I moved back.

Happy Juice

When I visited in March of this year, Emily could drink. Now? I have been calling her a light-weight but I think her partying days should end soon. Things have been happening and her disease is progressing. A few months ago she called me up, in tears, shaken, over a night of drinking. As Huntingtons disease progresses, your body just can't take or deal with the alcohol or any kind of drug in your system well, and it will affect you in ways it might not have before. I read this in a book I found at the library the other day. Anyways, she had gotten drunk at a bar (when really it was only a couple drinks, which is typically fine for her) and apparantly she had taken a swing at a good friend, didn't remember it, fell off of a barstool------- which is relatively really funny and it still is, but all of it is part of how its affecting her different.... i'd still pay to see it happen though :) and then someone had to walk her home... and it turns out this guy and her did the dirty deed a few times. Emily woke up and didn't remember shit, freaked out, could barely move all of the next day when her kids were there, and she went as far as going to the hospital and telling them she was raped.... This blog entry is a little bit more graphic and personal than most, but I'm really scared for her and how things are affecting her now. There were other people there at her house and they all know that this guy only walked her home, yes things happenned but she was at the time willing and whatever else, i dont know, it's weird describing that about my sister. When she was up here at Taste of Madison a couple weeks ago she could barely walk after a couple beers, it's just not good. Starting to get worried more lately..........

Overdue

Having no internet in my new little place makes it hard to do the things on the internet I'd like to do, so here I sit at a little cafe on a swanky street AKA State Street in downtown Madison, my new home.

From the time our grandparents both passed away, things have been commonly known as haywire in my family with arrangements, new schedules, and just overall getting used to the big changes. One sister is taking care of a new baby, another is looking for a new house- her husband was laid off, Emily is dealing with the obvoius, and I'm trying to start all over with a job, no car, a teeny studio, and my parents are im sure trying to get used to not scheduling thier days around taking care of the two most important people in my dads life aside from my mom.

Saturday night I met Emily after work for something called Taste of Madison, it's an annual festival showing off all the beer and best food of the city, as well as good music! We met up to watch Cold and Taproot, she was drunk after like 3 beers.... fricken lightweight.

Em got a job in town at a place where she used to work, I helped convince her to get it, and I'm really happy that she decided to. She will still get assistance for household bills and food, but this will help so much more. Her kids started school and it goes around her working hours perfectly.

Looks like things are looking up
:)

No more tears in heaven.

Our grandfather passed away one month to the day from my Grandmothers funeral.

After the day the priest came in, his brain swelled more, putting him in a sleeping state, but alert to people talking and able to react without opening his eyes or using the left side of his body. Since he had made it very clear to not be fed, and he was unable to eat on his own, his body was breaking down. The UW hospital in Madison let him be able to be transported back to where him and my Grandmother stayed, into the exact apartment even where he stayed by her side through her battle. He died peacefully in his sleep, without pain.

The memorial service and funeral were held in the small town of Bronson, Michigan, where him and my grandmother had spent thier lives together. They were beautiful services, and in a bittersweet way, it brought our family together. My grandparents were the rocks of our family. With both of them gone, things are going to be so much different. My family has taken a lot of hits and I'm confident we're strong. I watched my dad cry for the first time in my life in church as I sat next to him at the funeral. This was a heavy experience for us all. He lost both parents in a month.

On a lighter note, I was lucky enough to ride to Michigan with my parents and Emily got stuck riding with my two other sisters, a baby and a husband. Muhaha. She texted me bitching asking why SHE had to ride with them, and that she's staying in my room at the hotel though- because at my Grandmas funeral, apparantly she was drunk the night before and was super hungover and puking the whole day. Way to go Em! lol.. Yeah it happenned again. My parents gave me the order to be stylist for her, and to make sure no stomach boob or ass was hanging out anywhere. She forgot her clothes and borrowed some from my sister Betsy.. without trying them on. This was an adventure all in itself. We managed to plan out the outfits for the weekend, all was well. Although i'm not too sure about the blue short dress with a purple scarf she wore to the funeral. What's life without expression though right? I talked to the kids a few days later as I was walking down State Street, one of my almost daily things. They let me know that they didn't lose the yen I gave them yet... Emily just decided to put it somewhere and now they can't remember where.. but, they aren't lost. Typical. Sheesh.

Exam time

I don't like quizzes I dont like tests and I sure as hell don't like exams, but for whatever reason, my family is going through 2 months of continuous tests.

Our grandfather had a stroke last saturday morning.

I've been spending the better part of my time either at a hospital or with family.
Emily has came up a couple of times (in her ghetto van... har har) to spend time.

He's dying of a broken heart. God how I'd want to experience what they had together, it's my ultimate goal in life.

He's back in Monroe now at the place where him and my grandmother lived, and he is more than likely going to slowly slip away. As he sat by my grandma's side through her last years he made it clear that he didn't want any form of feeding or breathing tubes, no surgery, nothing. He wants to go when he is supposed to go. The priest came in Saturday afternoon to give last rites, and he cried when my grandmas name was mentioned, I've never seen that in my life. Heavy and raw, that was pure love. So intense.

My life is on hold right now as things unfold. Normally I'd pray for him to hang on but really I want him to be happy and pain free.

Em seems ok, and she stole another shirt when she was up here in Madison, pretty typical. Talked to her kids yesterday, they wanted me to take them to a park, but I dont think they realize i'm an hour away with no car... otherwise we'd be on our way.

..home.

Is where i'm at.
God what a feeling. Non-replaceable. I suprised Em and the kids by showing up and giving them yen, I was greeted with a running start pushover hug from three kids that slammed me onto the couch that was needed behind me. Hell yeah.

She still looks good, she's still wearing my clothes I let her 'borrow' last time I was home. I've grown to realize I'll never see them again. I think I'll live :)

I'm living in Madison with a great 'ol friend and her friend. I'm lucky, again, to have people helping me out. Everyone should keep thier chins up, bad shit can only be turned around. Now i'm hustling for jobs, walking everywhere, etc. It's nice to not know what the hell tomorrow will bring. I dig it. Emily said something about bringing the kids up to madison soon to the zoo, I think that would be an awesome idea.. and adventure for sure.

I helped her fill out her FAFSA when I was home last time, and I got an email for her to renew it for the school year, I really hope she sticks to this idea this time. ooooo and I found her a potential job! A lady outside of monroe needs a helper/caregiver, and since Em is a CNA and can't find online jobs without a computer, i figured i'd email the lady and let her know to call me if she was interested in meeting my sister.


She still needs to get her damn driving license. Dork.

Konnichiwa (sp?)

I'm sitting here in what was expected to be no bigger than two coffins, watching planes take off and land in Narita Japan.

Everyone should travel on thier birthdays. I was delivered a free (but not optimal tasting) bottle of champagne on the plane, and the room I have at the airport is HUGE!!! A good friend scared the shit out of me last night when he described the size. It's like throwing a spider at an arachnaphobic. But, he's cool so it's ok.

Called emily yesterday, she and the kids are stoked to see me, I have a measly 1000yen left, I'm going to save it and give it to my nephew Alex for his 3rd birthday, after, of course, an updated mohawk haircut when I get home.

I love being an Aunt
:)

cheers to birthdays and safe travels.

As Robin Williams said in the beginning of "Patch Adams" .. which i'm watching now..
All of life is a coming home. Salesmen, secretaries, coal miners, beekeepers, sword swallowers, all of us. All the restless hearts of the world, all trying to find a way home.

How f'n true.
I'm on my way.

Get a move on!

In 12 hours I'm going to be wondering if I forgot anything since I'll need to be at the airport to check in 2 hours after. INSANE.... This is all becoming reality. My best friend from middle school is helping me out with a huge beautiful place to live until I'm on my feet. Thanks to her my clothes are already up in the closet.. lol. I've got interviews lined up waiting for my arrival. I've got friends planning my bday celebration (I fly in that very night.)

Things are happening. It's a really intense feeling.

This time tomorrow I am going to be sitting in Japan somewhere, during a long long layover, reading a book, eating sushi, maybe sleeping.

Time for changes. I'm ready. Called Em just a minute ago, she says "happy birthday" between cigarette breathes. I told her she's early because it's not until midnight, she then asked if she could call me later since she'll have free minutes when it actaully is my birthday so she will be able to wish me a better one. What a dork. Can't wait..

I'm scared to go home and see my grandfather without my grandmother. I'm scared to see Emily and try to not react if she's had any progression in her disease.

Me leaving Guam is a big thing, I wanted to live here forever. I didn't plan any type of going away party or birthday thing. My friends came together recently enough for my fundraisers, and I've spent time around those that mean the most to me, so I'm content. Now I get to be able to see that whole group of other people who mean something to me, at home.

Maybe since it's my birthday I can be bumped up to first class? That would be neat.

I'll update this from Japan, but for now, hafa adai. Goodbye Guam.

Back to business

I'm baaaaaaaaaack, and cancer free. What a weird few weeks. Scary shit. Over.

Moving on, Em helped me add a little comical value to my situation. After surgery, I guess it's common (I learned this AFTER) to have some random twitches and spasms, Em laughed and said "Welcome to my world! ha!". We talked about the hate for catheters, stupid nurses who don't know how to put in an IV, and how we love tattoes but hate getting blood drawn.

Amazing how people who aren't blood related can be so related. :)

During my break from blogging, both our Grandmother and my Ex's mother passed away. Both funerals were held the same day, and I was unable to attend because of f'n surgery. Things have been rough. Good thing that hardships can make tougher skin, I think I'm close to leather.

I'll be home in Wisconsin in less than two weeks. I can't wait. I called Em and said hi to the kids, they sure miss thier favorite Aunt. I sure miss all of them too.

Break time

It's necesarry for me to take a short step away from updating this blog as I'm going through some medical issues of my own. Mark my words, as Arnold would say, "I'll be back."
:)

We're lucky.

Legacy of an adopted child

Once there were two women who never knew each other
One you do not remember, the other you call mother.

Two different lives shaped to make yours one
One became your guiding star, the other became your sun.

The first gave you life, the second taught you to live it
The first gave you a need for Love, the second was there to give it.

One gave you a nationality, the other gave you a name
One gave you the seed for talent, the other gave you an aim.

One gave you emotions, the other calmed your fears
One saw your first smile, the other dried your tears.

One gave you up, it was all that she could do
The other prayed for a child and was led straight to you.

And now you ask me through your tears the age old question through the years,
"Heredity or environment, which am I the product of?"

Neither my darling, neither,
Just two different kinds of Love.

-Author Unknown




Happy Mothers Day

Pay it forward.

I'm flabbergasted today. My eyes are swollen from previous tears and I'm still in shock from hours prior. This site was not created to write or comment on anything about me personally, but this ties in to the purpose. I've always been a true believer of Karma, and that good things happen to good people. Today I can truly say that I encountered an angel in my life. Right now I life on Guam and I've been quietly stressed and frusterated trying to make ends meet to get back home to be closer to my family so that I can be around my sister and her kids and help out in any way that I can. Everyone back there knows I had made a decision to move back but Emily doesn't even know that her situation is the sole convincer for that choice. Based on a couple facebook status updates earlier today a lot of people are under the impression something terrible has happenned when in fact it is the extreme opposite.

Family is first, and there is just no other way to put it.

Someone who has requested to remain nameless and not be acknowledged was chatting with me today, and bought me a plane ticket home. This was not asked of this person, they just did it. I have not met this person in my life or even talked with them on the phone, ever. They were aware of my families situation and my growing frustration with not being back there, especially today since litearlly 13 people asked when I was coming, and I had no answer. This person has no idea what they have done for me today. This is the single nicest thing anyone has ever done for me in my entire life. I was instructed to check my email, and in it was an itinerary, my roomate saw me break out into uncontrollable tears. There still are good people out in the world. God bless them. This just doesn't happen.. and I'm still in shock. Because of this person I'm able to get back to the people who are the most important in my life and do what I need to do, and spend time with those who matter, and be there for the ones who really do need me right now to be a hell of a lot closer than where i'm at right now. What a heart. I don't know what I did to deserve this. Times are hard, and in order for me to afford the move I would need to sell my car, pay off the loan since my dad is the cosigner, and use whatever is hopefully profited still to buy the one way back to Wisconsin. I had posted an ad online on a couple places but couldn't even afford to place a classified ad in the paper. A couple people had showed minimal interest at best. I applied for a personal loan to consolidate my debts and to buy the ticket and just yesterday was declined. Needless to say i've been fucking stressed out and I dont want to be anywhere else but home.

A couple weeks ago a great person opened up thier home to me as a place to stay awhile getting ready for the move, so that I could save more, pay off things faster, and be more comfortable. They are another wonderful blessing and without her who knows if I would have had today happen. It's crazy how things can happen in life. I can't believe how blessed I am today. No words can even begin to express the level of thank yous that I want to yell out to the world. I was in a crying state earlier out of pure happiness and gratitude for these people in my life. I can only hope that someday somehow I am able to in some way do something to balance the good they are showing me in return.

I leave Guam on Saturday May 30th at 4:20am, and arrive in Chicago that evening. I'm still floored at todays events, and am going to cherish these final weeks of living in a place where I'm proud to say is my second home, and filled with some of the most kind-hearted people i've ever had the ability to meet in my lifetime. God bless this island and the people living and from here. Mark my words when I say I will be back to visit.

Many people have told me this little bit of advice today, and I too say to you to pay it forward. Someday it will make sense for you too.

The Vehicle

it's 750-something right now am in the morning on tuesday the 5th (happy cinco de mayo!) don't believe the time it says, it's just taking me forever to type because I'm tired and got no sleep. Wow.. got no sleep? It's morning, screw it, I dont care, and I'm writing poorly too, again, because I dont care :)
Anyways, I get a text from emily approx 5 minutes ago.

"Hey jess, i'm getting a van tomorrow, isn't that cool?"

Hell no it's not cool! Vans are the tell tale sign that 1) you're old and have settled for a family vehicle. 2) You're old. and 3) you're old.

The chick needs a car, she has one, with 2 flat tires, that hasn't moved from the curb in front of her house for many months. While home she said I could borrow it to get from A to B but i graciously declined. Besides, it was nice out a lot when it wasn't freezing my nose hairs, so a good walk was needed after cheese curds and other shit I didn't need to eat while there.

And oh yeah, maybe the van thing is cool, because she's still a rebel.. she doesn't have her damn driving license... hahahah.... last time she decided to buy and drive a car without being legal she stamped marijuana leaf stickers all over the thing and always thought the cops were such dicks because she allllllllways seemed to be targeted.
I love her.

Cosmo Feb 2009

While killing time at my day job I came across last months edition of the wonderful Cosmopolitan magazine. Those who know me are aware that not much of this publication has anything to do with me, I kinda picked it up as a joke to be honest. Moving on, there was a "real-life read" article on Huntington's Disease in there. Showed the picture and told the story of a younger woman who tested positive but wasn't showing many symptoms yet. There was a picture of her feeding her cousin, who is in the later stages of the disease, and it made me stop everything I was doing. Last week at this cafe I go to almost daily, there was a man here with his son, and he had Huntington's as well; this was made clear to me by the lady who's always busting her ass here (yeah I'm there now.) After they left she said how it was so sad to see his decline, and she explained all these wonderful stories and accomplishments he has done in his life. I kept mute and spoke nothing of my sisters situation. If it wasn't for her I wouldn't have lived part of my life. her peircings, tattoes, love of rock music etc somewhat made me curious to all it was about. Earlier this morning I was chatting with a good friend about how I was a little on the rebellious side in highschool, and I did this because of admiration for my sis in a way. She wasn't scared to stand out, be a little edgy or look a little different. I credit her for my endless party nights and bad choices, I lived a little :) I could have been smarter a lot of the times, but, it's cool. Pretty pleased with last months copy, although I have to say thier 'guy confessions' are always going to be lame as hell.

To pee or not to pee.

One of the newest, uncomfortable and kinda funny in a way situations to hit Em recently was the pee situation. Right before I came back for my visit I was nicely struck with a kidney infection, which means catheters, and no shortness of pain with the process. Emily was ironically hit with the same annoying infection around the exact same time. When I was back we shared stories of how we wanted the world to end while things that arent supposed to be put up certain areas were shoved in. Honestly? It sucks, it's not nice, and it's just not meant to be.

Moving on, besides morning slurrness of speech and very minimal random jerky movements, she started to feel like she couldn't do #1 very often. Ask any chick- feeling bloated, well sucks. Being a human sponge is not desirable, unless it's chocolate or something. Anywho, she compained daily of not being able to pee, and health care isn't cheap anywhere. She went in to be seen for this, deal with having another tube shoved up a non-entering hole and jokingly came back to me saying that she needs to go to physical therapy to strengthen her pelvic muscles so she can control the urge and take care of the situation a little better.

She's kinda lucky, kegel excercises work wonders for other things too, watch out guys, she's single.

A word of advice for all

Desirada

Go placidly amid the noise and the haste,and remember what peace there may be in silence. As far as possible without surrender, be on good terms with all persons.

Speak your truth quietly and clearly;and listen to others, even to the dull and ignorant;they too have their story.

Avoid loud and aggressive persons;they are vexations to the spirit. If you compare yourself with others,you may become vain or bitter; for always there will be greater and lesser persons than yourself.

Enjoy your achievements as well as your plans. Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time. Exercise caution in your business affairs;for the world is full of trickery. But let not this not blind you to what virtue there is;many persons strive for high ideals;and everywhere life is full of heroism.

Be yourself.

Especially, do not feign affection. Neither be cynical about love; for in the face of all aridity and disenchantmentit is as perennial as the grass.

Take kindly the counsel of the years, gracefully surrendering the things of youth. Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness.

Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be.

And whatever your labors and aspirations, in the noisy confusion of life, keep peace with your soul. With all its sham, drudgery and broken dreams, it is still a beautiful world.

Be cheerful.

Strive to be happy.

Could it work?

The last link in my previous blog had some potential great news; the FDA just this past friday has approved a drug that's the first of it's kind to treat one of the major symptoms found in over 90% of Huntington's Disease sufferers, the spastic movements. This drug does have side effects but is able to get those dealing with the teret-like movements to be able to relax and function almost completely without the jerky movements! This is astounding news! It has been in studies since 2006 and was proven to help people get out of thier house and enjoy daily life activities more. I called my parents before heading to work to have them write down the name of it so they can relay it to Em's doctors, then I called her to let her know of it, and the excitement in her voice was the best way to start off this monday morning, which is also a holiday, Happy 420 :)

What is it?

Huntington's disease is caused by a faulty gene on chromosome 4. The gene, which produces a protein called Huntingtin, was discovered in 1993.
In some way - which is not yet understood - the faulty gene leads to a damage of the nerve cells in areas of the brain, including the the basal ganglia and cerebral cortex.
This leads to gradual physical, mental and emotional changes.
Each person whose parent has Huntington's disease is born with a 50-50 chance of inheriting the faulty gene. Anyone who inherits the faulty gene will, at some stage, develop the disease. A genetic test is available from Regional Genetic Clinics throughout the country. This test will usually be able to show whether someone has inherited the faulty gene, but it will not indicate the age at which they will develop the disease.

The symptoms of Huntington's disease usually develop when people are between 30-50 years old, although they can start much earlier or much later. The symptoms can also differ from person to person, even in the same family.
Sometimes, the symptoms are present for a long time before a diagnosis of Huntington's disease is made. This is especially true when people are not aware that Huntington's disease is in their family.
The early symptoms include:
slight, uncontrollable muscular movements
stumbling and clumsiness
lack of concentration
short-term memory lapses
depression
changes of mood, sometimes including aggressive or antisocial behaviour
Great strain is put on relationships if unexpected temper outbursts are directed towards the partner. The time before a diagnosis is made can be very confusing and frightening because people do not understand what is happening and why.
Some people who know they are at risk spend time searching for the first signs that they are developing the disease. They may worry about simple things like dropping a cup, forgetting a name or becoming unusually bad-tempered. Most people do these things occasionally - whether they are at risk from Huntington's disease or not - so they could be worrying unnecessarily.
Anyone who is concerned should have a word with their GP who may refer them to a neurologist for tests. These tests could include a number of simple assessments and possibly a brain scan. The genetic tests mentioned above may also be used to aid diagnosis.

Later on in the illness people experience many different symptoms which may include:
involuntary movements
difficulty in speech and swallowing
weight loss

as well as emotional changes resulting in:
stubbornness
frustration
mood swings
depression
Cognitive changes that people experience can result in a loss of drive. Initiative and organisational skills, which may result in the person appearing to be lazy. There also may be difficulty in concentrating on more than one activity at a time.
Sometimes, psychological problems, rather than the physical deterioration, cause more difficulties for both the person with Huntington's disease and their carers. Some changes are definitely part of the disease process although they made be made worse by other factors. It is depressing to have a serious illness and extremely frustrating not to be able to do things which previously seemed simple.
In the later stages of the disease, full nursing care will be needed. Secondary illnesses, such as pneumonia, are often the actual cause of death.

Currently there is no cure for the illness, but there are many ways to manage symptoms effectively.
Medication can be used to treat symptoms such as involuntary movements, depression and mood swings. Speech therapy can significantly improve speech and swallowing problems. A high calorie diet can prevent weight loss and improve symptoms such as involuntary movements and behavioural problems.

The above information was taken from http://www.hda.org.uk/charity/whatishd.html

While looking online for a good explanation of the disease, I came across the following site, which offers a shred of help for the future symptoms.

http://www.sciam.com/blog/60-second-science/post.cfm?id=fda-approves-first-huntingtons-dise-2008-08-18

There are miracles in the science of medicine, let's hope this one works to help ease the struggle of what she'll face.

The Introduction

What to put, what to put. The first blog of many to follow in the path of what will become so complex, difficult and challenging for someone so close to me. I am Emily's sister. Currently, she is 28 years young, and the mother of three children; Alex-2yrs, Kohna-5yrs and Rage-7yrs. I forgot to mention she is a single mother and raising them alone.

Emily is the kind of person in highschool that your parents didn't want you to hang out with. She wore black lipstick, had odd body parts pierced, cherished Marilyn Manson, and did everything that our catholic school girl upbringing tried to convince us otherwise of. Despite her appearance she was probably one of the most caring, honest, and non-scary people I've ever met in my life.

We're not blood related. We don't share the typical bond that sisters or even parents normally have with thier children; I'd die to know what that feels like. All of us four daughters are adopted, (closed adoptions at that), from different families. I view us as lucky, and unique. My sister Em and I shared a bond that was different from that of those with me and the other sisters. She is the closest to age to me, and besides the black lipstick, we shared a lot of interests and ways of life. I guess there can be reasons to explain this. I was quizzed on who the lead singers of 90's grunge rock bands were at 12, my first hit of marijuana was courtesy of her, and highschool parties and alcohol were nicely put into my life from her circle of friends. Looking at her and I is another story. We amaze people when we would go somewhere together. Back in teh day I did some stupid modeling with Hawaiian Tropic, Hooters, etc. so I'm sure you can imagine my over-done and what I think is now worthless appearance. Emily on the otherhand would be rocking a FREE TIBET shirt, mismatched with odd color corduroy pants and beat up sneakers.

Of course we had the childhood arguements and differences, but as time went on and years flew by we became closer. It's now to the point where she will call me up after not talking for months to gripe about some silly boy or ask relationship advice. Time never seems to pass, now every moment is worth that much more.

This is something I have been contemplating doing since I learned of the news. It will be many years worth of misspells, grammar error, and random stories and thoughts, but will be worth more than the world to me to be able to share her story with you.

April of 2009 is a month that will forever stay embedded in my brain. Welcome to my sister's life and journey.

Emily Kellett Bystry was born on March 1st, 1981. The rest is to be continued.