NKF Kidney Walk - 2012

On October 13, I had the opportunity to participate in my very first walk with the National Kidney Foundation, and I gotta tell ya....these people know how to do it. I have no idea what the actual numbers were, but there were a LOT of people there, especially considering the crappy weather. There are two things that I'll remember forever about that day. The first is my friends who braved the elements, stood with me and supported me on this day. I don't reach out for help a lot, but emotionally, they all knew that this is what I needed, and I'm forever grateful.

breakfast provided to fuel our bodies for the walk

Caroline enjoying a warm cup of coffee

my friends, hanging out together, waiting for the festivities to begin

Izzy and Joacim playing around in the healthcare tent.

And the dogs.....there were SO many dogs there, dressed up for the dog contest.  Awesome.  Look at this little cutie!

Introducing Sidney the Kidney!!!  He was flashbombing my picture, but in a great way :)

dog + cow = dow or cog

here I am, getting ready to go on stage..yes, on stage

I was one of the top individual fundraisers for this walk, and those of us that achieved this milestone were given the opportunity to speak to everyone.

here's Izzy and Daniel...she was a VERY grumpy girl that day, but she sure does remember it

Here I am on stage, taking the following picture

And here's the picture.  Joacim's right in the front, and to his right is Aaron, who I met when I attended National  Kidney Day in Washington, DC back in March.  He was in the twin cities the day of the walk and joined my team, which was AWESOME!!!!  He also has the only video of  me giving my little schpeel (which went amazing well for me at least) :)

And here we are (with cranky Izzy) in front of my sign (also because I was a fundraising all-star)  Yay me!!

So that's it for the walk.  My girlfriends and I had decided to go out for a girl's night downtown, but my legs were swollen and I was cold, so we decided to have everyone coming back to our house for pizza, beer, wine and hanging out.  Between the walk and that, though, my friend Kristin (who has a membership to Lifetime Fitness) got us in as guests and we sat in the hot tub and sauna (although the sauna last less than a minute), but it got me good and warm from the inside out, and I felt great.  Everyone came over later and we had ourselves a nice little gathering,

at night, it's almost impossible to take a decent photo, but this was everyone chowing down on some pretty great pizza

Murphy...might be possessed by aliens

Caroline loves Rosie..I mean, who doesn't?  She put some sunglasses and a red lei from earlier in the day on Rosie, and it was hilarious, but it didn't last long enough for me to get a picture.  Maybe we'll trick her again sometime soon!

And then we started talking about our upcoming Halloween, and I decided that Caroline would make a PERFECT Grace Kelly :)

Man, it was such a great day.  It's hard to describe how special these people made me felt, even if they didn't even realize it.  Moving to a new state has been great, but building these friendships has been the icing on the cake!

Brain fart : FSGS Sucks

I can't say I'm completely surprised that I missed this, but I JUST realized that I've been replying via email to all the comments on my blog, and they've gone nowhere.  I actually have to reply in Blogger, not via email.

I'm an idiot.  Or just foggy.  And of course I'm blaming it on the drugs, defective beans, etc. :)

So for all of you that have left comments in the past, please know that I tried to reply, but my stupidity got in the way :)

Pumped up but worn out : FSGS Sucks

That's the best way to describe me right now.  It's been another long week, although a teeny bit better than the past few.

I'm sitting here on the sofa, seriously contemplating hitting the hay.  It's with a smile on my face that I look back 10 years ago, remembering what I'd be doing on a Friday night.  I'd just be getting ready to go out to party.  I'd be having some pre-drinks with friends, listening to dance music and getting psyched up for a night out on the town.  And now, I'm psyched up because I got my toenails painted after a delicious dinner of Cocoa Krispies and Fruity Pebbles (not in the same bowl though) before I fell asleep.  Pathetic, but entirely true.

I FINALLY got my office cleaned up today (well, at least 95%....the rest is decorating) and I'm thrilled.  But now I'm super-swollen from standing so much.  I just got out of the shower, and I was shaving my legs, noticing how the swelling is full set in my thighs right now too.

I really hope that it dissipates before tomorrow.  For those of you that don't know, don't remember, or never knew, tomorrow morning is my first walk with the National Kidney Foundation.  The walk is in the morning (aka "no sleeping in") but I'm so excited to meet fellow kidney peeps around the area.  There are at least 2 people that I've made contact with (and I've spoken about both of them on this blog) and plan on meeting tomorrow, and a friend I met in Washington DC back in March during my trip with NKF is going to be in town and has joined my team.  I also have several friends right here that are going with me to the walk to support me, and I couldn't be more thankful to have such amazing people in my life.  THANK YOU :)

The best news of all is that I SURPASSED MY GOAL!!!  Actually, I was one of the top individual fundraisers for this walk, which has allowed me the opportunity to be one of the speakers at the event.  I'll be representing kidney patients, so wish me luck that the wheels don't fall of my wagon as I'm up there on stage :)  Also send good vibes so the rainy weather that was forecast earlier in the week holds off in the morning.  We need the rain, no doubt, but I'd REALLY like it to wait a bit :)

Again, thank you all so much for your support.  Let's get walkin'!

Owie : FSGS Sucks

I've gained 10 pounds this week. And I have no appetite.


Thats all I have to say about that (for tonight, anyway) ;)

Feeling thick : FSGS Suks

Remember my comment about saying I feel thicker? Well, jumped on the scale tonight and it turns out that I've gained 10.2 pounds this week.

I don't really think there's much else I can say about that.

Something's up : FSGS Sucks

Something's up and I don't know what it is, but I know it's something.

People like me with a chronic disease (or any disease, probably) are incredibly in-tune with our bodies, and I  can tell that something's not right...I just wish I knew what it was.

My eyes are puffy.  My entire body feels as though bugs are crawling all over me.  The swelling in my legs is intense...much like it was at this time last year, and it doesn't go away with sleep anymore.  I feel like I need one of those inversion tables in order to have any effect, but then that'd probably make me pass out, which would also equally suck.  Even my pee is different.  And the swelling is not only in my legs, but moving up to my abdomen and my neck.  And I've lost my appetite.

I'm off the Acthar, and I'm getting thicker, and I have no idea why.

If you look any of these things up, put together, they're not so good.  I have an appointment at Mayo on the 15th of October, but I need to move it because I have a meeting for work that I can't miss, so no idea when I'm going to be able to get there.

So that's the physical side of things....the emotional side is worse.  I feel like I've given up a little...or I'm just (say it with me now) so tired of being so tired.  My new job (that I love) keeps me going 100% all of the time.  And when I'm not going 100%, I'm sitting in a car..a lot..watching the fluid pool around my ankles.  The other day, when I was flying home from Detroit, I almost missed my connection because I had pain in my shins that was SO bad I actually nearly stopped and started crying.  I physically couldn't walk any fast...forget running.  And it made me FEEL sick....it made me feel incapable of doing what I want, and it made me so fucking mad that I can't describe it.  I can't think.  I can't remember.  I almost showed up to a party a week early tonight...thankfully my neighbor gave me that look like "are you crazy"...maybe I am...maybe she's right and I've completely lost my marbles.

The physical limitations are growing, and I can't seem to stop them.  I can't rest enough.  I can't sleep enough.  I can't do anything.  I try to eat something good (or eat anything, for that matter) and mid-meal I'm so nauseous that I can't stomach another bite, yet I continue to gain weight.  My shoes aren't fitting again, and neither are my clothes.  I know it sounds as though I'm describing physical things again, and I guess I am, but imagine what it does to a person emotionally.  To know that you're being completely betrayed by your body that should, by all odds, be completely healthy.  I just had shitty odds.

I put my pilates machine upstairs so that I can at least start to use it to become more active again, as all of this "resting" is making me feel like Jabba the Hut.  I can at least start trying to become a bit more flexible...it's something at least.  But we need to move some stuff out of the way, and I can't move it myself.

And right now, at this exact moment, Izzy is screaming, "I WANT TO SNUGGLE WITH MY PAPPA".  You think that'd be cute, wouldn't you?  Now imagine that in a hateful, nasly voice, over and over and over again.  Not so cute now, is it?  I'm so tuned out right now to her...I feel awful.  I just don't have that mental kind of fight in me right now.  I'm fighting all sorts of my own demons, and believe me, I know how selfish that seems.  But how can I take care of her when I can't even take care of myself.  I'm trying to put on my air mask before hers, yet I feel like a complete and utter parenting failure.

I know I'm my own worst critic.  No one is expecting all of these things from me, except for my husband, which hurts because even after all of this time dealing with it, he just doesn't get it.  I feel like the way he looks at me is one of distaste.  Like he's frustrated with my "laziness"...

Fuck, I don't know what to do, and there isn't a single person in this world that can tell me.  Not that that's stopping me from asking.  A guy I work with has a brother that's a nephrologist here in town, and he did a wonderful thing by setting up a call with him.  The doctor was so very kind, and honest.  I told him that I'm interested in learning more about a medical nephrectomy, which is essentially killing off your kidneys by medicine.  I know, I know...sounds drastic doesn't it?  But that's how bad I feel.  I still can't understand why I'm trying to save things that make me feel so awful, and that's because the grass is always greener on the other side, isn't it?  That doctor gave me some things to think about, as well as some of my other kidney friends.  I don't know which way to go, or what to do, but it's time to explore all of my options, no matter how drastic they are.

Would I feel better on dialysis?  Maybe.  Would I be able to handle it, emotionally, if something went wrong and ultimately I was responsible.  There's something to be said for letting nature run its course, but I honestly can't imagine surviving kidney failure.  I don't want to wait until I'm not even mobile before I do something, but I also want to consider how my choices affect my life and that of my family.  What kind of a commitment is it?  How much support will  I need?  How will I take care of Izzy?

Soooo many things running through my head..  Luckily, I've got the NKF walk coming up where I hope to meet more people and talk about them.  The walk is October 13, so you still have plenty of time to donate.

Here's a link to my page:  http://donate.kidney.org/goto/jenntrunk

There's also the Nephcure Lunch and Learn in the Twin Cities on November 10th.  You can go here to register if you're interested as a patient, or just someone who wants to know more.  A light lunch is provided, and the event will go until about noon.

I've got lots of things to think about, and I actually could use some useful advice, if anyone has any.  Maybe a personal story about their experience, or any sites/links that you could send me to for info...anything would be GREATLY appreciated!  Thanks for reading :)

Work travel ain't all it's cracked up to be : FSGS Sucks

This week is hectic. On Monday, I had a sales planning meeting for 7 hours. On Tuesday morning, my co-worker and I drove to Brookings, SD for a meeting in the afternoon, and then spent the night there. This morning, we headed back to Minneapolis, which gave me just enough time to go home, change clothes and head to the airport to fly to Detroit today. I'm sitting at O'Hare waiting for my final flight, and I'm soooo ready to be done today.

I put on some compression stockings for the flight because my legs have been uber swollen, so I figured it couldn't hurt. However, they bunch up a lot right behind my knee, so it's a bit uncomfortable. Plus, my feet feel like they're in some sort of binding. Hopefully this will all be worth it tonight when I finally get to my hotel and can take them off. Sweet relief is only 4 hours away......

All-Star : FSGS Sucks

I got an email from the NKF the other day, telling me that I'm $300 away from being an NKF Kidney Walk All-Star.  Now this may not be a big deal to other's, but it's HUGE for me.  I cannot change the course of my future all that much.  The ONLY thing I can do is to raise awareness and money.

I raise awareness by posting on this blog, by posting on Facebook, and by the FSGS and Pregnancy group on Facebook

I raise money by walking.  And I need you're help to meet the goal I've set for myself.  The last few years I've raised well over $2000, but this year I haven't even hit $1,000 yet.  I knew it would be harder this year, as I didn't have Lilly people to harass :), but I didn't think that $1,000 was impossible to achieve.  Now I'm starting to get worried.

Here's the link to my donation site.  Will you please take a moment to donate if you haven't?  Or if you have, can you share the link with friends?  I'd really appreciate it.  Thanks!

http://donate.kidney.org/goto/jenntrunk

First sickie of the season : FSGS Sucks

For the past few days I felt that something was "off".  My eyes and legs were puffier than normal, and I was just getting sloooooowwwww.  And then I woke up Saturday morning and felt like I had swallowed sand, which eventually progressed to razor blades.  Awesome.  LOVE daycare.

I knew it was coming...Izzy's been a little snotball all week, so I'm amazed I made it this long.  We probably did a SUPER stupid thing yesterday, though.  I was feeling, well, awful, but we needed to go shopping for Izzy to get her some warmer clothes and boots.  Izzy was a trooper, but even I was exhausted at the end of the day.  To reward her for being good, we let her go to the place where all germs gather for a parade....the all play area.  Oh yes, my friends, we braved the screaming, snotty, bare-footed kids in order to give Izzy a few moments of bliss in a rather boring day for her.  Once we sat down, I looked at Joacim and told him that this was probably a REALLY stupid idea, and then we convinced Izzy that she had to go to the bathroom, which luckily was upstairs and far away from said germ box. :)  Bad parenting moment?  No...I say utter GENIOUS!

Anyway..funny little aside. I took some cold medicine in the morning before we left to go shopping.  As the day went on, I just felt more and more tired and wiped out.  I was all pissed off, talking about how tired I was of being so damn tired...ranting all day and just generally grouchy.  Then I got home and realized I took the nighttime cold medicine.  And that I'm an idiot.  I blame the drugs.

Lunch and Learn in Minneapolis : FSGS Sucks

Great news, everyone that's near Minneapolis.  Nephcure is hosting a lunch and learn on Saturday, November 10!!! This is a great opportunity to meet others like us, and hopefully learn something new.  I also believe that my doctor from Mayo is one of the speakers.  I'm VERY excited to attend this.  I hope you'll sign up too!!!

Video post!!! : FSGS Sucks

<iframe src="http://player.vimeo.com/video/49835579" width="500" height="375" frameborder="0" webkitAllowFullScreen mozallowfullscreen allowFullScreen></iframe> <p><a href="http://vimeo.com/49835579">IMG 0163[1]</a> from <a href="http://vimeo.com/user1496827">Jenn Trunk</a> on <a href="http://vimeo.com">Vimeo</a>.</p>