Inaugural Indy NephCure Walk - Broad Ripple Park

Today was the first of what I hope to be many NephCure walks.  It was great day.  Perfect weather.  Beautiful park.   Family and friends..what more could I ask for?  (besides a cure :)

Here are a few photos from the event.  If you'd like to see more, please visit my Lilla Loppan Photography website to view the rest.  I'll also be posting a slideshow on my photography blog...
 

 We initially tried to hijack this shelter, but glad we moved because the people who actually reserved it showed up right after we moved!  :)

I have to hand it to Leanne.  Being a mother of 4 boys, she thought of EVERYTHING we might need, down to the wet wipes :)

 And she made these YUMMY cupcakes, which I thought were terribly adorable!  No FSGS!  No NS!

 Our shirts.....important message....

 And this, my fellow readers, is Leanne.  I feel very fortunate to have met Leanne.  She is actually the first person I've met that has the same disease that I do!  Isn't that strange, and sad at the same time, that it's so hard to meet people like me?  Guess that really drives home how rare this disease is!  Leanne is wonderful...so full of ideas!  And her heart is sooo big...she's already thinking of what we can do over the winter to raise money...incredible!

 We had a small number of walkers this year, so we were able to keep it really informal...

 Here's my friend Liza and Cristian.

 This is Linda and her husband Robbie.  She also has FSGS, and was diagnosed later in life like me.

And here's our small (but AWESOME!) group.  On behalf of Leanne, Linda and the thousands of others like us,  THANK YOU...for supporting, for listening, and for caring.  Our lives would be must less sweet without you all.

 OMG...and here's Leanne's grandson, Ethan.  His parents made this adorable shirt for him.  On the front it said, "I walk for Grandma."  How cute!

 And here's the little cutie himself.  Such a good baby!

I am hoping for a big turnout next year.  Now that I know what all is involved, I (and the others) will be working that much harder to ensure a bigger and better turnout for next year.  My first fundraising goal was $1000, and when that goal was reached I upped it to $1500 (which was also reached).  As of today, I've collected $1730!!!!  Outstanding.  Speechless.  Gobsmacked at the support you all gave me and my disease.  I can not thank you enough for everything!  But I'm not finished yet :)  I can continue to fundraise until January 16, 2011, so you'll be hearing from me some more :)

NephCure walk THIS SATURDAY!!!

First of all, I want to say Thank You to all of you who have commented, donated or signed-up for the NephCure walk this Saturday.  WOW.  I am so humbled by the generosity of my friends...can you believe they helped me raise almost $1700?????  TOTALLY.  BLOWN.  AWAY.

Now, some business....
The walk registration begins at 10:30am.  We would like everyone to register that is participating, so if you haven't already been able to register online then this will be your opportunity.

We'll start the walk at 11:00am.  I'm not sure yet how far we'll walk, but it won't be extreme :)

After the walk, we'll plan on hanging out for awhile.  Even though this will be a small group for the 1st annual walk, we have MUCH to celebrate:   the fact that we're bringing awareness to these 2 kidney diseases!!!  We'll have water, some fruit/granola bars and some cookies to snack on, but I (personally) would really like to enjoy the day and have lunch after the walk.  Sooo, if you're game for that, then bring a picnic lunch, some drinks, chairs and maybe a blankie and we'll enjoy ourselves.

For those of you unfamiliar with the location of the walk, here's a link that will show you the location:
Broad Ripple Park
1555 Broad Ripple Ave.
Indianapolis, IN 46220

Ok..I think that about covers everything.  If there's anything I missed, or if anyone has any questions, please comment here or post on Facebook and I'll update.

Thanks again!

Jenn

Brianne's birthday and a trip to Chicago!

My little sister, Brianne, celebrated her 12th birthday on September 20th.  We were outside most of the day, and the farmers were harvesting the crops.  And I must say that I miss seeing this (but I don't miss the dust!)

Here's Brianne blowing out her candles.  As my gift to Brianne, I decided to take her to Chicago with me for a girl's night.  She had never been to Chicago before, and I wish I could've captured the look on her face when I told her that she was coming with me.  Absolutely priceless, and one that I'll never forget :)

We didn't get to Chicago until late, but after we checked into the hotel, we headed straight out for some shopping.  First stop was The Gap (it was a little chillier than I planned for and wanted to get a sweater), and then to Water Tower Place for some dinner.  After that, we did some more shopping.  Here's Bri sitting near the Water Tower.

Little girl in the BIG city!!!

We walked down to the river because I thought she's want to see that.  She kept making fun of me because I don't like walking over the bridge, but she quickly realized how much it vibrates when cars are driving over it!

After we were done shopping, we stopped at Dunkin Donuts for a snack and then back to the hotel room.  Bri's here playing with my iPad.

The next morning, we got up and had breakfast, headed to Village Pantry to grab some snacks, checked out of the hotel and headed to Soldier's field.  I was participating in the Chicago Nephcure walk (and also photographing it).  Here's Bri with her new friend Gina.  Gina also suffers from FSGS, same disease as me, but this girl has more personality than her little body can handle!  :)

After the walk was over, I took Brianne to get the best taco she'll ever have in her life.  I used to live above this Mexican joint called Taco Burrito Place #3 (no idea where #1 and #2 are) but it is THE BEST TACO AND NACHOS I'VE EVER HAD, and I'd been jonesin' for one for a long time, so it was perfect in every way.

Then we headed back south to take Brianne home.  After I dropped her off, I decided to take a little drive through the country.  There are a bazillion windmills that have gone up right near my parent's house, and I wanted to take some photos of them, plus the light was INCREDIBLE!  This picture below was taken on a country road right north of my parents house.  I used to go on this road every day on my bus route to school.

It's a little freaky standing underneath these things, but they are very quiet...

On a mission....

This post is about me, or more importantly, my kidney disease and the effort I'm undergoing to raise funds for research.  I'd like to shed a little light for everyone on what this disease means to me on a daily basis in the hopes that you'll share this with anyone you know and encourage people to donate to the cause.

So, let's see...I think I'll first start with my list of pills that I take every single frickin day....

1. tacrolimus (Prograf) - This is an immunosupressant used to try to stop my kidneys from leaking protein
2. Prednisone - the only reason I can figure that I'm taking this AGAIN is because all of the studies done with tacrolimus also included prednisone
3. Losartan (Cozaar) - a blood pressure medication also used in aiding my kidneys to lessen protein leakage
4. Doxazosin - another blood pressure medication used to treat my high blood pressure, which is caused in part by the tacrolimus (I was getting severe headaches)
5. Buproprion (Wellbutrin) - because all of these drugs make me edgy
6. Lexapro - for those episodes where I want to SCREAMMMMMMM.
7. Lansozaprole (Prevacid) - heartburn
8. Sulfamethoxazole (Bactrim) - an antibiotic I take all of the time because, when on immunosuppresants, I am much more susceptible to infection (and having a little girl in daycare means I'm a MAGNET for infection at this point)
9. Singular - not kidney related, but another pill nevertheless
10. Lo-ogestral (birth control) because if I were to get pregnant while on these drugs, it would be a very very bad thing
11. Calcium - because these drugs leach calcium from my bones
12. Multi-Vitamin - because they're just good for you
13. Fish Oil Pill - heart healthy (and there's NO WAY I could eat that much fish to compensate)
14. Probiotics - because the antibiotic that I'm on has wiped out all the good bacteria from my system, so I'm taking these in order to try to restore some balance
15. melatonin - used to help me sleep

 Ok, so that's my list...at least I THINK that's it...it's getting harder to remember it all, quite frankly.  I think it's sad that Izzy has to see me taking all of these.   She's actually started to help me get my pills together every week....she's so happy when she hands me one of the bottles (and it's the only way to keep her from actually messing with the pills themselves).

There are soooo many things I hate about this disease, but the uncertainty is the worst.  I feel like I'm in a state of suspended animation...just waiting for the next set of labs to see what my future holds.  Did my protein go down?  Is the level of meds in my blood too high?  How's my liver doing, by the way?  Will I have to keep taking this, or am I out of options?  Will I get to have another baby?  Will Izzy get to be a big sis someday?  When will my kidneys start to decline?  Next year?  10 years?  Never?

Sadly, there isn't a definitive answer for the last few questions.  My doctors, at this point, don't want me to try to have another child...they say it's just too risky.  As for my kidney function...no one knows what will happen, or when it will.  Sometimes I wonder if it would've been better if I had never known at all, especially if I'm okay for 20 more years.  Life has not been what I imagined it to be since being diagnosed...it changed, and I feel as though I'm being cheated.

Unfortunately, there just isn't enough information out there about this disease.  And that's why I'm pleading with you to please consider donating to my fundraising effort for Nephcure.  We are holding a walk on October 16th, 2010 at Broad Ripple Park.  The walk is more symbolic in nature than physical, but it's so important to raise awareness about this disease and what Nephcure is doing to try to find a cure.  The NephCure Foundation (NCF) is a non-profit organization dedicated to finding a cause and cure for Nephrotic Syndrome and Focal Segmental Glomerulosclerosis (FSGS), which is the disease that I was diagnosed with most recently.

So please, consider donating to my cause.  I would love nothing more than to see you all out there supporting me on October 16.  You can register to walk with me at this link.  You can sign up and create your own team and spearhead your own fund-raising effort.  Or, if this is more than you have time to take on right now, no problem.  Just add yourself as a member to my team (Team Lilla Loppan).  There is no cost to register for the walk, but a donation to the cause is very much appreciated.  If everyone donated $5 or $10 dollars, it really starts to add up.  Please donate whatever you're able to.  This money goes directly to Nephcure to fund research.

We have a very small group here in Indiana right now...we've had a hard time getting it off the ground, which is why it is so important that this walk be held.  We need to raise awareness...we need to build a foundation for the future.  We need to be there as a source of support for all of the people that suffer from these diseases and their families.  I've met some wonderful people through this organization...people just like me. It's made me grateful to realize that I'm not alone, but also sad because there are truly so many of us out there.  The only way to find a cure is to fund a cure, so please, consider donating.  Thank you!

Save the Date! Nephcure Walk Indianapolis - October 16, 2010

Nephcure is the only organization in the world (that I know of) that is seeking a cure for my disease, FSGS, which is why I've become fairly passionate about it.  We've recently started a chapter in Indianapolis, and while it's having a rough time getting off the ground, I'm hopeful about the support it can bring in the future.

As part of the chapter becoming a reality, we're holding a Nephcure walk on October 16, 2010 in Broad Ripple Park.  I don't think we've nailed down the time quite yet, but I anticipate it being in the morning...when  I know I'll post it here.

Anyway, I'd love to have you be a part of this event.  You can form your own team and fundraise, or you can be a part of my team.  And if that's too much of a committment right now, hey, I've got something else...just donate to my team :)

Normally, I'm not really comfortable in the "asking for money" arena.  But this is for me.  This is for my future.  This is for Izzy.  There may not be a cure found in my lifetime, but hopefully there'll be a cure someday.  Looking at videos on YouTube of little kids suffering from this makes me realize that I'm pretty lucky to have the knowledge and maturity to understand it and "deal" with it.  But these little kids...wow....they just have to grow up to fast because of all of the "adult" things they're dealing with.  It's quite sad, really. 

So I'm asking any of you that can spare it to please donate.  There's a link to the right on this blog that you can click and donate to my team.  I'm also including a link in this post.  Thank you!!!

Here's the link to my donation site :  http://www.firstgiving.com/jenntrunk

Here's a video on YouTube that I found that gives a nice description of my disease in terms that anyone can understand...