a $589 giveaway!

i cannot find the words right now. these generous angels are all banding together to make a big impact.

we will be taking entries until Tuesday February 14th, and a winner will be announced on Wednesday February 15th!

with this BIG giveaway, valued at nearly $600, you can win the following:

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If you are new to the blog

here is a quick snippet of our story

and just why this giveaway is so important.

We are in dire need of NEW research with this disease

and I am ready to make it happen.

I recently wrote about

my life with Cystinosis

My daughter needs me here on earth with her.

It is as simple (and as heartbreaking) as that.

I am a 28 year old mother, living with a rare (1 in 250,000) disease that is ultimately fatal. The disease is called cystinosis. Many of my friends fighting this disease have not lived to see their 30th birthdays. I have a beautiful, little ball of light who turned two years old last week. Because it is so dangerous for women with this disease to go through such a high risk pregnancy, she is 1 of about 10 in this world.

 Cystinosis is a relentless illness that attacks every cell in the body. Treatment is a drug that has similar side effects of chemotherapy; this drug must be taken every 6 hours, of every day. This medication slows down the progression of the disease, but there is no cure. Eyedrops must be done every hour one is awake, in order to prevent blindness from the buildup of cystine crystals in the eyes. Cystinosis causes kidney failure, diabetes, stunted growth, muscle wasting, problems swallowing, and many other complications. 

TO ENTER:

You must be a follower of the blog to enter.

This is mandatory, along with the purchase of a raffle ticket! :)

Both actions count as one entry.

To follow: Find the 'join this site' button

on the right hand sidebar

(right underneath the about me section)

AND

purchase a raffle ticket to win ALL the above prizes

your "ticket" is a $10 donation to 

Cystinosis Research Network

you can donate HERE

or 

HERE through Paypal

(mention me, Tahnie if donating through Paypal)

Multiple entries may be purchased if desired.

A $20 donation is two entries, $30 is three entries, and so on.

Leave one comment for every raffle ticket ($10 donation).

Giveaway is open to U.S. residents only.

(Thank you for understanding!)

Giveaway will end February 14th, 2012

Winner will be picked at random and

announced here on the blog on

February 15th, 2012.

Thank you from the bottom of our hearts!

We are such a small, small community

(only 500 of us in the U.S.)

EVERY SINGLE DOLLAR

brings us closer to better treatments

and ultimately a cure.

and good luck (!!!!)

p.s. 

this isn't a part of the giveaway

but, could you 

vote for us

on top baby blogs?

the more votes, the more awareness for cystinosis!

you can vote once every 24 hours.

thank you.

thank you.

a million thank yous.

xo,

tahnie

imagine (my life with cystinosis)

Some of you know that I had a kidney transplant when I was 11 years old, due to kidney failure as a complication of Cystinosis.

Some of you know that Cystinosis is a relentless disease, as it attacks every cell and organ in the body.

Some of you know that is is rare. A rare disease is one classified in the fact it affects less than 200,000 in the United States. There are about 500 people living with Cystinosis right now in the United States. Yes, five hundred.

Some of you know that cystine crystals, when built up in the body, result in cell destruction and death.

*******

Imagine being 28 and losing the ability to eat solid foods. Imagine facing stress with every meal, wondering if you are going to choke on your food.

Imagine being 28 and losing your voice. Imagine wanting to record yourself reading a book to your daughter, so that she will remember what you sounded like.

Imagine being 28 and losing muscle in your hands, having friends with this same disease who can no longer do something as simple and as pleasurable as snapping their fingers, or holding their phone, due to such severe muscle wasting in their hands.

Imagine taking medication every 6 hours. Yes, even during the night. Imagine this medication is known to cause ulcers in lab mice, extreme exhaustion, headaches, numerous GI problems, leaving you to push through a heavy fog throughout the majority of your day. You just reach the tip of that iceberg of starting to feel somewhat clearheaded, and it is time to take it again. You must take it willingly, because it is the only chance you have at slowing down your disease.

Imagine spending 2 hours of your day, EVERY DAY, doing exercises for your esophageal and hand muscles. To preserve what muscles you have. Willing your body to fight, fight, fight. To hang on. To thrive.

Imagine being required to put eyedrops in every hour you are awake, to diminish the crystals in your eyes so you won't go blind.

Imagine being thrown the harsh reality, that at a mere 28 years old, you must dig deep within yourself to unearth coping mechanisms to handle growing old gracefully, all before your 30th birthday.

Imagine you are the momma to a healthy, vibrant, little ball of energy who has such fervent zest for life, she makes you want to LIVE bigger & better every single day. She inspires you to fight tooth & nail. She opens your eyes to the notion that if you refuse to accept she will grow up without you, you could just be crazy enough to start a ripple of fundraising and awareness that will CHANGE that.

my friends, LIVING with cystinosis

CRN famly and medical conference

july 2011 San Francisco

photo courtesy of sarah dawson photography

We are here. We may be small in population, but oh we are mighty. We are brave. we are fighters. We forge ahead through dark days and up against tremendous odds. We are courageous. And we need your help. 

Anger can be a good emotion. It can be a great one. I've done too much crying over lack of research in terms of muscle wasting and Cystinosis. The time has come to take action. If you aren't part of the solution, you are part of the problem, yes?

In honor of Sookie's 2nd birthday next Wednesday, I have created a wish through the causes organization. You can click through right HERE to donate to the Cystinosis Research Network. I've made a goal of $2,000. We can do this. This is attainable friends! All of these funds are being dedicated for muscle wasting research. This is a crucial need right now and although difficult to face, is a GOOD problem to have because we adults now are living long enough to be facing this somewhat new challenge of the disease. We are living longer, but there is still so much work to be done in terms of research. We do not receive any government grants for research because of the rarity of the disease. (about 1 in 250,000 live births)

Sookie thanks you. She loves her momma. She wants her momma to be here for every one of her birthdays, to provide kisses, hugs, encouragement, laughter.

Alone we can do so little; together we can do so much. 

Helen Keller

*******

A quick edit: Although these are my health challenges and at times I wonder if I am strong enough to face it all, I am BLESSED BEYOND ALL REASON that I get to live this life. I LOVE my life. I have already lived three times as long as I was supposed to, I have a gorgeous little pint sized ball of sunshine who is 1 of about 10 in the world and I get to do life with the most incredible, kind hearted, guy ever. He rubs my feet when people are trying to get an IV in me and they are failing miserably.

If you prefer to donate through another avenue besides the causes page you can do so HERE through a secure link through PayPal. Just mention Sookie's birthday or Sookie! :)



Checks can also be sent to: 

Cystinosis Research Network

302 Whytegate Court

Lake Forest, IL 60045 USA

Checks should be made payable to the "Cystinosis Research Network".

Remember that The Cystinosis Research Network is a tax-exempt organizations granted "501(c)(3)" non-profit status by the I.R.S., The CRN Federal tax id # is 043323789. All Contributions are Tax-Deductible.

THANK YOU.

love & light to you all.

xo.

LIFE IS FOR LIVING.

giving fear the middle finger

I met with a speech pathologist last week.


It was a big step for me, in confronting this new phase of my health. While cystinosis (and therefore, the muscle wasting associated with it) is progressive, I believe in fighting and being proactive in the avenues I can be. Although I cannot reverse what is happening or undo the damage that has been done, I can work hard to give my body assistance and do what I can to stay strong. he is going to give me a regimen of exercises to do to aid muscles that are connected to swallowing and also voice. I'm jumping in and taking action. and even if it doesn't help, at least I can say I did it.


At the suggestion of my awesome, inspiring, courageous friend Jessica, I purchased these cool tension balls to exercise my hand and arm muscles. There are some jokes there that I won't make, ha but... I'm excited! Knowing that I'm taking an active part of fighting back is oh so good for my heart and soul.

I've been living my life in fear the past several months: fear of the unknown, fear of Sookie growing up without me and not remembering me, fear of losing my voice, fear of having to eat nothing but puréed foods because of esophageal muscle wasting, etc, etc, etc. But a few nights ago during bath time, I watched as Sookie became so overjoyed with glee that she was screaming YAY at the top of her lungs and smiling so wide, shaking with utter happiness. Okay girlfriend, I get it. Life is short. Splash in the tub until the floor is as wet as the ocean, take your monkey for a walk on a cold day, eat your soup on the kitchen floor, slam the bell from pit while singing 'Elmo's world' as loudly and obnoxiously as possible... live it up, always bite off more than you can chew, grab fistfuls of life and suck the marrow out of each day because this is all there is.

That is where I am and what is happening. 
How are you?


xo.
tahnie

This Year

This year.
This magical year.
This challenging year.
This year I met the most fantastic human being I've ever had the honor of meeting.
This year I grew more tangled into the one I created her with.
This year I dug deeper and thought about things I never have before.
This year I questioned my decisions, our decisions, and the impact they would have on her life.
This year I became a different woman.
This year I found new pieces of myself.

There are multiple times a day when I stop and think, she knows so much more about life than I do. No, she isn't walking yet, but she has it all figured out. She smiles at me with the beams of someone who knows all the secrets of the universe.

My wish for her birthday? A fundraiser for the Cystinosis Research Network and big hope that I will be around to watch her grow up. CRN has been working diligently to improve the lives of those who live with Cystinosis. They have made tremendous strides in the last 15 years so that I can live bigger and better, and so can other members of my sweet Cystinosis family. My mother was a founding board member, and now I serve on the Board of Directors myself. My goal is $1,000; which is a lot to us because we do not receive any government funding for research. Because of that, the families and friends in our community must raise every single penny ourselves if we want improved medications that don't include one that destroys our GI systems and must be taken every 6 hours, or eye drops that are reccomended to be put in every hour to prevent blindness. I'm asking for a donation of $5, the price of a coffee from Starbucks. It truly doesn't take much to make a measurable difference. You can donate and read more HERE. If you feel so inspired, please share this on facebook, twitter, your blogs. I would love to see this reach people out there who have never even heard of Cystinosis. (Which is most of the population, but still.)

Thank you. 

26 years ago (Welcome To Holland)

I really appreciate the sweet comments to my last post! I feel bad for writing two such emotional posts back to back because I try to keep things in a balance of serious and happy around here (and well, in my life) but today is a special anniversary.

It has been 26 years since my parents received news that would alter their lives forever. Note, I didn't say ruin. I emphasis the alter part of the previous sentence.

December 13th, 1984 was the first time they heard the word Cystinosis. It was the day I was officially diagnosed. I was blessed with a gifted pediatrician who knew something was wrong with me and promptly sent us to the nephrologists at the University of Utah hospital. I have heard so many horror stories about years of misdiagnosis nightmares; I owe the man my life. Which is why he is now Sookie's pediatrician as well.

 {Isn't my mother gorgeous? I think I look like ET or perhaps a much less adorable version of Sookie. ;)}

My Cystinosis family is such a vital part of my support system. There were some of my biggest cheerleaders throughout the pregnancy. I have met the most inspiring, brave, poignant, stubborn, and hilarious souls in my journey; most of them all younger than me. And the strength of everyone just leaves me amazed and baffled how hard people can fight.

Over the years I have come to the realization that a chronic or terminal illness is often times harder on the family and friends of the person living with the affliction that it is on the actual person.

There is a beautiful, heartbreaking, and stunningly accurate poem I have loved for some time now that captures sentiments of those living with medical issues and parents of differently abled children as well. It is called "Welcome to Holland".

“Welcome to Holland” by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome To Holland”.

“Holland?!?” you say, “What do you mean “Holland”??? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills…Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes that’s where I was supposed to go. That’s what I had planned”.

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very significant loss.

But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.

Love & Other Drugs

A few weeks ago I went to see Love & Other Drugs. The fact I saw this before The Deathly Hallows might as well be a sin. But that is another post entirely, that would probably take me hours to write, about how seeing the Harry Potter series just isn't the same since my sister has been gone.

(This post does contain some spoilers. Just wanted to share that warning so you aren't disappointed if you haven't seen it yet. And if you haven't, you should go see it now.)

I went into the movie thinking I would see the storyline portrayed in the trailers; player Jake meets his match in co-star Anne. Apparently this was a huge mistake. I'm not quite sure what their angle was on that, because I ended up sobbing for most of the movie and loving it anyway. Except that it would be nice had the newly committed and brand new mommy with the chronic illness been warned of the subject matter of said plot. You know, just to avoid the swirling dance of tears and epiphanies during a movie in which I thought my range of emotion would consist of nothing more than making sure I wasn't obviously drooling over Jake Gyllenhaal's everything and coveting Anne Hathaway's curls.

I admit I'm a sucker for sick girl doesn't want to commit, is afraid to love fully, type of movies. Sweet November made me crazy emotional but I loved it despite Keanu Reeves' horrible terrible no good very bad acting. Steel Magnolias, I can't watch very much because I might possibly drown in my own tears and never get out of bed again if I indulge in it too much. (Woman dies of kidney failure shortly after having a child doctor's warned her never to have? Yeah, enough said. ;)

There were gems of funny throughout the movie too. Sometimes it felt as thought it was switching back and forth too abruptly, but the comic relief was much appreciated once I realized where they were going with it all and that darting out of the theater and sneaking into Harry Potter might not be the best way to cope with my reluctance to sit through a movie that hit entirely too close to home.

The thing is, (well, of the many things) I know there are more devastating diseases out there than Cystinosis. I know I've been given the keys to experience many bursts of life that so many others do not. I took my first steps, I went to my first day of kindergarten, I learned to drive, I graduated college, I've been to Paris and Amsterdam, I've loved, I do love, I not only became pregnant, I experienced birth and was blessed with meeting my daughter. However along the path of all of that has been many near death instances, eye drops every hour so I don't go blind, medication every 6 hours that wreaks havoc on my digestive system, a kidney transplant at 11; while my peers were spending their time worrying about the adjustment to junior high school, I was wondering if I would die during surgery, or worse, wake up. But it is my life and one of the reasons it is so frustrating (as so eloquently pointed out by a mother of a child with Cystinosis, who is like a second mother to me); we get glimpses of normal and then just like that we are puking for days, fighting fatigue, wondering where that normal walked away to be and if and when it will return again and grace us with it's presence.


You splatter and sprinkle love into any kind of illness and of course it gets tricky. None of us would choose to watch the one we are tangled up in suffer, lose basic skills required for day to day living, or be bed ridden in pain. But it is difficult for both parties; one feels helpless, the other feels lost. And of course you never know when someone is going to leave this earth, it could be in a car accident tomorrow. When you have a life threatening illness hanging over your head it is a bizarre knowledge to have that it will most likely be the reason your chapter ends.

There have been four young adults who have passed on this year from Cystinosis, as far as I know. I am an active part of the community and because we are so small, everyone knows everyone; we hear the news...good and horrible. All four of these people were younger than I am. Is that thought terrifying? Of course it is. (For example, lately I'm choosing to ignore the fact I need to figure out what to do about my gallbladder and stop having nightmares about dying during surgery or developing colon cancer after being left with no gallbladder. Because only eating once a day leaves me completely and utterly drained of every last ounce of precious energy.) I worry about not being around for Sookie's first day of school, or teaching her to ride a bike. I think about her having her own children one day and wonder what she will remember of me. All I can do is try to instill the magic of life, sweet lessons, little victories, and cherished moments into her innocent eyes. Teach her to always and forever live with a full and open heart. Give her the confidence to wear herself on her sleeve and to never apologize for who she truly is. Show her that this world is a place full of whimsy, hope, light and love.* Although sometimes I get overwhelmed and panicky; it feels like a race against time.

*(Well and of course the occasional lesson on Manolo Blahnik.)

The unknown of your own mortality and well being holds power, the future can be foggy and threatening; so you really have no choice but to put everything you have into the passion of the now. Cement your heart in the moments of today.

I'm Loving...

After a rough weekend with my health, (having painful gallstone attacks which I am trying to treat naturally because I really want to avoid surgery) today I'm feeling optimistic and I am so thrilled for some things!



My online fabric flower class, piece by piece starts today. It is taught by the oh so fashionable and talented, Elizabeth Kartchner. In the end I will have my very own embellished tee. I am so excited! I have been adoring all the cute embellished shirts everywhere lately but most of them are more than I would like to spend. I have been wanting to make my own for months now, however I am sewing challenged and never knew where to start. I picked the cream and turquoise combination and I'm going with a gray tee. I hope the color palate works out well!

Saturday night R and I took my mom to the airport. She is attending IPNA (International Pediatric Nephrology Association). Tomorrow from noon to 6 pm, Cystinosis Research Network will be featured. This is an incredible opportunity for us and has been in the works for 5 years! I am still in shock it is happening but so ecstatic that it finally is a reality. It means so much to our extremely small community of only about 500 patients in the United States. I see this as a turning point in our battle to find better treatments and improve the quality of life of those of us living with Cystinosis.



Now, I love summer. I love cute sandals, snow cones, watermelon and concerts on July nights. But this morning I became really eager for fall, when I heard a crash in the kitchen as a breeze came through the window and knocked my vase into the sink. (It was not broken, thank goodness!) It is only supposed to get to 69 degrees today! I am drooling over all the darling boots I see at DSW, Victoria's Secret and Gojane.com



From my love of boots to my love of football! The number 24 ranked Utah Utes take on number 15 ranked Pittsburgh on Thursday! I hope to make it to the game as we have excellent season tickets in the former student section, but it just depends on what my gallstones decide to do that day. Ha! I was only able to make it to one game the entire season last year because of the pregnancy, so I want to make up for it this year. It promises to be a great game though!




Even though we have only been at it for a few weeks now, I get such a kick out of how quick S has caught on to the concept of solid foods. We still haven't found a high chair yet (I know, it is at the top of my to do list!) so we have been feeding her in the bumbo on top of the table. It is a challenge because she wants to turn around all the time and doesn't want to sit straight in it. Anyway, I want to learn how to make my own baby food for her, but today she gets to try carrots! I bask in watching her figure out if she likes something or not the first time she tastes it. The faces she pulls are pricess! So far she has tried rice cereal, sweet potatoes, squash, and peas. Her pediatrician recommended not giving her any kind of fruit, (not even juice) until she has had all the vegetables. I'm all for this, I want her to have a love and appreciation for all things veggie.

Happy Monday! It is going to be a fabulous week!

Family

Family means many different things to many different people. It all depends on who you ask. I know some of my 3rd and 4th cousins very well, some I have never even met. It can be a strange fact of life for me to wrap my head around, but I think if you need certain people in your life, the world has a way of making them a part of it through whatever avenue it takes.

This past week or so we have had a death and 3 new young ones diagnosed in our little Cystinosis community. Of course the new families diagnosed are only ones that I am aware of, I'm sadly sure there are more, but it breaks my heart each time nonetheless. With all of this going on I have really been aching for the company of these special people; whether it be because of a conference (which I have to wait until July 2011 for), or just a trip to hang out and be our goofy selves.

Indeed there are many ugly facts that come with living with any sort of medical illness or diagnosis; you want to know life expectancy, you want to know what kind of life your child is going to have, you want to know the quality of life your precious one might have, you want to know medications, treatment options, risks, side effects, and so on and so forth. And then something breathtakingly special happens; you meet people going through this journey with you, they might be at different stages, but they understand in ways others truly can't, people who are strangers and yet an hour after meeting them you feel you have known them forever and a day. I've been blessed with this experience many times over my 26 years of this disease and it truly is something magical. I do not know what I would do without my extended family who make up my Cystinosis family. They are there for the little moments, the big victories; like a surprise and previously thought impossible pregnancy and everything in between. They understand dual alarm clocks so you can wake your child up in the middle of the night to give them medicine, they understand medicine that smells and tastes like rotten eggs, they understand doctors who do not know what they are talking about, they understand the frustration and pure hell of misdiagnoses, they understand insurance battles, they understand the battle of a perfect diaper system so you don't have to wake up twenty times during the night to change your child's bed sheets. They understand the daily struggle, the hourly struggle, the heartbreak that your life is nothing like you thought it was going to be. And even though you will reach that state of acceptance, you can mourn the loss of normal for the rest of your life. They understand that, and it is okay. Along the way, they will make you laugh through your tears.

And most importantly, they understand and appreciate a really hilarious vomit story.