Wednesday, February 27, 2013

Wedding Wednesday: February's Over

Ben and I did a lot of stuff last week and over the weekend. But don't worry: it was all a labor of love.  The tasks we accomplished involved weeks, even months of research, but it's such a great feeling to know that things are falling into place.  Here's a quick rundown of some of the things we checked off our list last week:

"Goin to the chapel:"  When I told a friend of mine that Ben and I were finally setting the line up of our wedding music, he asked if we'd be employing that celebrated and classic tune by The Shirelles in the ceremony.  It's funny because the place where we're getting married really is a chapel.  No doubt that will be playing during the ride up to the ceremony on the wedding day.  Instead of that, the night before, my dad (the man from whom I inherited my love for music, specifically classical and jazz)  and I did a listening session to find some great songs to play for every part of the ceremony.  Now, at the chapel, they have some rules about what kind of music you can play for weddings:  they prefer classical or religious, but will give you one or two breaks on contemporary music as long as it's instrumental.  For the moms, the bridal party and the recessional, it's all classical.  And for my march down the aisle, we're doing a contemporary song.  And Ben's dear friend Kyle has agreed to sing during our communion ceremony.  For Kyle's song, Ben and I went through a TON of options.  We wanted to choose a song that really hit at the heart of how we feel about our faith and the role that it will play in our marriage and lives together.  We go to an awesome church near where we live and they always have the BEST music; the worship team performs songs written by other popular Christian groups.  We've been going there for over a year so we had a lot of songs to choose from.  The tough part: reaching a consensus.  Since it's worship music, not every person responds the same way to each song.  And Ben and I are so different already, I'm sure it's not a surprise that Ben and I couldn't agree on a song that we liked  I won't be revealing the song that Kyle's singing on here, but it's from the band, Citipointe.  

Ceremony....done?  Almost!  Order that the bridal party is going to walk in on? Check!  Music? Check!  Marriage workshop? Completed!  Communion accessories?  Ordered!  Readings?  Almost done!  Vows?  Not started.  Eh, we're getting there.  Ben and I still need to have the discussion about the flow of the vows, so that they're not crazy different.  But other than that, after this week, I think it's safe to say we can put the ceremony on the back burner until May when we'll probably make some last minute tweaks.  

Upcoming Project-- the Pre-Wedding:  Or as most people call it, the rehearsal dinner.  We're not going to spend too much time on this portion of the wedding weekend because A) it's going to be very casual; and B) it just naturally shouldn't take 9 months to plan a rehearsal dinner.  So the goal is, by March 15 to have a confirmation on tent/table/seating vendors, and food.  We already put together a guest list.  Once we confirm the other two things we'll get to work on the rehearsal dinner invites.  I'm really excited about this aspect of the wedding because Ben's dad has agreed to host it on his property.  He has a lot of land and Ben and I are hoping to have a backyard (or is it front yard?) BBQ, with a bonfire.  I love bonfires.  I think that's one thing I'm really looking forward to about becoming an Ashman:  enjoying bonfires.  My family doesn't have a pit or much land so I was never able to live out my dream of enjoying bonfires...until now.  

I'd be lying if I said I wasn't at least a little bit distracted while writing this post.  I'm thinking about how this time last year I had no clue that I was about to get proposed to.  I'm also thinking about how just a few weeks ago I'd been scared about having my transplant so soon, but then also optimistic that I'd be having it now, at this moment, this week.  I'm also thinking about how I really want to just take advantage of every day.  When you're planning a wedding everything involves looking ahead to that one day, or the days beyond that one day.  Everything I'm doing is so that June 15 will run smoothly and be beautiful and fun and romantic.  Sometimes I think, what if I don't make it until June 15?  I know that's morbid but come on, this really is a life or death situation and it's not like I'm having these thoughts on purpose because I'm some hipster or trying to come up with material for a good novel.  This is my life! These are my thoughts!  I think about death and living and the wedding.  Growing up, people would focus so much on telling kids to think positive and "turning frowns upside down" that I worry we're avoiding teaching them how to actually DEAL with stuff.  The way I deal is to acknowledge that yes, I am scared and I do worry about dying before the wedding. It's OK to have feelings...negative feelings even.

Anyways, with all this focus on June 15, and then my dying/dead kidneys, I've been wanting to take more and more time to just be in the moment of every day.  And not even do like a bucket-listy adventure or anything but just enjoy the simple things.  Sometimes I do  something for the wedding, other times I play "Surprise Kitty" with the cat. And I let myself play it for 15 minutes.  I've decided to stop beating myself up if I skip a wedding Wednesday to veg out on the couch with Ben.  I'm grateful that I have something to look forward to, whether it's June 15 or Feb. 27, or 28, or March 1.  I'm excited for all those days, and every extra day that I get. 

Monday, February 25, 2013

Faith By Hearing: New Series!

Consequently, faith comes from hearing the message, and the message is heard through the word about Christ. ~ Romans 10:17 (NIV)

Wow, Friday's post was a "Debbie Downer," wasn't it?  Well, it was a downer kind of day.  Writing that post was pretty therapeutic for me, but I needed something more to pull me out of my death slump.  I'm not the type of person who can automatically turn my emotions off when I'm feeling upset.  I've had plenty of people command me to just "Smile!" when it looks like I'm not having a good day.  As if that will help!  Really?  Smile?!  I'm sorry but that's annoying, and it's not helpful.  Living with a chronic illness, I've developed my own coping mechanism. It's called "Pity Party.  Pray.  Press On."  I allow myself to sulk and cry and scream for 24 hours.  Then I pray.  So Thursday night, after getting the call, I prayed.  I asked God for something, anything, to let me know it was going to be OK.  My faith was small.  I searched around in my heart trying to pull at whatever strands of hope remained and there were barely any.  I had just enough faith to beg God to help me, to give me peace again, to take away the fear, to help me KNOW that he will make a way.  Then I fell asleep.   

The next morning, my eyes opened slowly. I was exhausted again.  I couldn't get out of bed, I thought.  I didn't want to.  I decided to check the Bible App on my phone.  This will be unbelievable, but here is what the App said.  

Have I not commanded you?  Be strong and courageous.  Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.  
~~ Joshua 1:9

After reading that verse, I was overcome with a flood of emotions.  I was shocked, in disbelief that I was really getting an answer to my prayer.  I was upset with myself because I almost gave up.   I stared at the ceiling.  My heart started to beat fast, I felt tears rising to the surface.  This time it wasn't an hour of painful sobbing. I shed just a few tears because I was so happy I didn't know how else to express it.  I was thankful.  I turned to look at the cat, who had been sleeping right next to me.  "Burton, God is here.  He is here with us!" I said.  The cat squinted almost as if to say, "Really?  You woke me up to tell me something I already knew?"   I jumped out of bed and squeezed the cat until he wiggled out of my arms.  "We are going to work today Burton!  Everything is going to be OK!"  

For the rest of the day, I was encouraged. The lab report from Thursday was bad.  My kidney function is down to 7 percent, and because the kidneys aren't filtering as much anymore, I'm a walking, talking tub of toxins and waste.  There's no date for my surgery and it sounds like I'm probably going to have to go on dialysis.  But I have hope.  I'm hoping for something.  I don't know what it is.  I don't know when it will get here. But when it does arrive, I will be ready, and it will be awesome.  

To the readers of this blog, how ever many or how few there may be, if you're going through something right now, I'm want you to know that I understand.  It sucks. It's not fair.  You just want it to end, but you're not sure when it will.  But open your eyes:  God is with you.  He is here, and He will always be.  He is working on your behalf.  He is orchestrating something so amazing and beautiful for you that when it is finally revealed you will not be able to believe it, because it will be that magnificent.  He loves you.  He will see you through.  This is His promise, forever.

Friday, February 22, 2013


"Trust your hunches. They're usually based on facts filed away just below the conscious level." ~Joyce Brothers

I'd been feeling sleepy...tired...exhausted.  Just sitting at my desk was a chore. Keeping my eyes open while sitting at my desk was a struggle.  I tugged at every last bit of energy I could to keep myself from doing the unspeakable:  falling asleep at my desk. I wanted badly to just lay my head down and rest my eyes.  Instead, I got up for my third cup of coffee.  Finally, I thought, these years of going to bed at 12:30 A.M. and waking up at 8 A.M. were finally catching up to me.  I texted Ben to tell him we needed to change our bedtime schedule.  I drank some coffee.  I felt like I was going to be sick.  Smaller sips, I thought.  This has to work.

Lunch time, I had prepared homemade minestrone soup the night before and packed it for lunch.  I was starving and looking forward to it.  I warmed the soup and took it to my Guild meeting. I ate quietly at the end of the table.  Something...was wrong.  I was about to vomit.  I surpressed it and kept eating.  Maybe I didn't heat the soup enough.  I finished the bowl and was thankful...I didn't upchuck right at the table. 

After Friday's mishap at Lab Corps, I knew I had to go do my lab work anyways.   My next appointment wasn't for a month.  Why did  I think I wouldn't make it until then?  Something told me I might not make it until then.  I should do my lab work.  "I should do my lab work, right?" I said to Ben on Tuesday night.  "Sure, babe."  "Yeah?" I asked.  "Even though the appointment's not for a while.  If something's wrong, I think the doctor will call."  I was hopeful.  But something told me, a tiny voice whispered, the doctor will call.

I woke up on Wednesday morning, nauseated.  It was deadline day.  I had to get my blood drawn and then go to work to help with the issue.  But I felt so sick.  Nevermind, I thought.  I drank some tea and wrote in my journal.  Half an hour passed and I was ready for a shower.  There it was again, that nausea.  Maybe I'm just hungry.  I went to the fridge and ate three pieces of a honeydew that I'd chopped up on Sunday.  Surpressed the bile, for a moment.  I got dressed and made my breakfast: plain oatmeal with a swirl of mapel syrup, and a tall glass of milk.  One of my favorite meals.  I read the news on my phone in between scoops of oatmeal.  There was the feeling again.  What was going on.  The cat glared at me while I ate, following the spoon from the bowl to my lips.  One more bite, I thought, I can make it through one more bite. I jumped out of my seat and ran to the bathroom, head buried deep into the toilet.  It took two minutes for the morning's breakfast, my favorite meal, to leave my body completely through my mouth.  I sat on the bathroom floor gasping for air.  The cat looked at me from just outside the door, wondering what I was doing.  I was wondering the same thing. 

I called Ben.  "You should work from home today," he said.  "I can't.  It's deadline day." I had a lab appointment, nonfasting.  I had to get something in my stomach quickly.  I finished the three tablespoons of oatmeal left in the bowl and headed out the door. 

I arrived at Lab Corps around 8 A.M. No wait this time.  It was meant to be, I thought.  I gave what urine I had and prepared to be drawn.  "You nervous?"  The nurse asked.  Why would she ask that?  I've been here many times.  "No," I said.  I lied. For the first time in years, I was nervous.  Ouch!  The needle entered my arm.  It hurt.  For the first time in years, it hurt. 

I went to work. I wore a tan blazer with my jeans.  My arm was, throbbing.  What was going on?  I took of my blazer.  The gauze was soaked in blood from the draw.  Not typical. I removed the gauze and tape and the vein was swollen, bruised.  Something's not right.  Something hadn't been right, for a while. 

I worked from home on Thursday, Feb.21.  I wanted to be at home.  My phone rang.  It was just who I expected.  My kidney doctor.  "How are you feeling?"  He knew I wasn't feeling well. He could tell.  My voice cracked, "Tired.  And I vomited yesterday."  I knew what was coming next.  "OK, I got your blood work this morning," he said.  It's not good."  

By the end of the conversation, my appointment from March 13 had been moved up to Feb. 26 at 9 A.M.  The possibility that I'd be able to avoid dialysis before my transplant...gone.  Fear, restored.  Hope, no where to be seen.  The future of everything...uncertain. 

I hung up the phone, sat in my apartment alone, and cried until I gave myself a migraine. 

Wednesday, February 20, 2013

Wedding Wednesday: Gettin' Serious and Serious Travel Plans

I have a confession to make: Ben and I haven't been planning the wedding on just Wedding Wednesdays.  Because we are now feeling the pressure of a big, expensive event bearing down on us, we've started planning the wedding on Wednesdays, and Tuesdays! I can't believe it myself.  For while though, we really did get by with just doing stuff on Wednesdays, and maybe setting up an appointment or meeting with a vendor on a Saturday or Sunday.  But that just wasn't cutting it sadly.  I say "sadly" because I love this wedding, I'm super excited about getting married, and getting to see a bunch of friends and family members that we haven't seen in a while.  But I've been trying to avoid something. I've been trying to avoid losing touch with reality

It is incredibly easy to get sucked into the hype that this wedding will be thee most important day in my life--the hype that it all has to be perfect and great and sunny, and everyone has to match. And you have to have DIYs and personal touches and enough time for pictures, and good food and open bar and homemade candy or everyone will hate you.  And I'll be the first to say that I did it, I...I became a "wedding porn addict."  Wedding blog after wedding blog, post after post, picture after picture, Pinterest pin after Pinterest pin.  If you've never explored this big world known as the "wedding industrial complex" then you're safe.  But if you have, you know how it's so easy to submerge yourself into a universe that is always pretty and always perfect, but so difficult to tear yourself away from being fascinated with...yourself, and what your wedding could be.  I know this probably sounds confusing, but in a nutshell, I've been trying to avoid boring people to death with my wedding plans! Oh, thank goodness for this blog where I take one day a week to obsess and write about my flowers and cupcake frosting!  

So this week, it's more ceremony stuff.  We're getting sheet music together, researching communion items, editing our readings, and working on our personal vows. AND, if I have a spare moment, addressing invitations.  

But there's one other thing I haven't talked much about on this blog, and it's a very important thing.  Before the month is up, Ben and I will be purchasing our plane tickets for GREECE!  Depending on who you are and your outlook on travel and life, you may have reacted to that statement like this:  

It's OK.  I've gotten that many times. Some background:  I LOVE TRAVELING. And throughout our time together, Ben has come to love traveling as well.  One of our life missions as a couple is to invest in memories, not materials. We may not ever have the nicest furniture, the biggest house, the most expensive car, or even the fanciest wedding!  What we will have is moments at dinner reliving that amazing night we spent in the nicest hotel we've ever stayed at in Maui.  Or longing for one of the best tacos from the best little taco shack we've ever eaten at in Monterrey Mexico.  And I could probably stay up all night listening to Ben talk about his childhood driving back and forth to Oregon.  You're always going to need a new computer, or a new iPhone because they come out with them every year, and we all know the lifespan of those wedding invitations.  But things that don't die or need to be repaired are memories of experiences you've had. 

Ben and I did a lot of research on potential honeymoon destinations, before we realized how expensive weddings are. After we came to our senses, we decided that Greece was a more realistic destination for us.  With equal parts beauty, history and romance, we think it will be a great place to relax and recoup after the wedding.  

The reason we've gotten so many surprise reactions to our decision, is because people are worried about us.  "What about the economy?" they say. "What about the riots?"  I could honestly go on and on and on about why those two things haven't deterred us from going to Greece, and why those two things will probably never stop us from traveling anywhere ever.  But I won't.  I'll just show you this, the view from the hotel we'll be staying at in Santorini: 

And this, the Parthenon, which has survived many good and bad economies I suspect:

Last one:  

So basically, we've heard everyone's concerns. We're taking them into consideration, and we're working with an expert to plan a successful and fun honeymoon.  And that expert has assured us that we will be OK.  

And I suppose if we do get stuck in a riot, what better place to be than on those steps, right? However, I should point out that the picture of the steps is in Santorini. Most of the political action is limited to Athens, the capital. But riots or no riots, Ben and I are looking forward to collecting several memories from our first vacation as husband and wife!  The Greece! 

And to be safe, we did purchase vacation insurance in case my new kidney decides that it hates Greece and wants to go back home. 

Monday, February 18, 2013

The Repercussions of Being an Irresponsible and Lazy Adult

As of 11:00 A.M., Feb. 18, it began to sink in that the next doctor's appointment I have may not be with my nephrologist, but with my kidney transplant surgery.  Because I screwed up.

As much as I love to plan and organize things, and make sure I do stuff at the exact right minute, there is just one task that I haven't been able to master yet.  Ever since I graduated college, and began seeing a new nephrologist (a.k.a. kidney doctor), who is great by the way, I've been having problems following orders.  Before every appointment, the doctors and nurses advise me to have my blood drawn and urine taken at least one week before every appointment.  I don't know why it's so hard to get it through my thick skull that I have to do this!  I usually end up getting the labs done, one to two days before, because I've learned the ins and outs of the blood drawing system and I've discovered that it doesn't actually take one week for them to do what they're doing to my blood.  Before every appointment, they run tests on my creatinine level, along with iron, cholesterol, etc.  Those tests are pretty quick actually!

So, because I realized this, I've pushed it to the limit every time. I don't go to Lab Corp one week before.  I go just one or two days before and pat myself on the back about how I got it done without following their stupid rules.  Those "stupid rules" however, were created for stupid people like myself, to prevent patients from waiting until the last minute and showing up without any updated labs.

Well, I thought my game would work.  On Friday, I went to Lab Corp during my lunch break. On days where I have to do labs or doctor's appointments, I try to work from home.  I started work a bit early that way I'd have an hour to take lunch.  But before I go any further, I have vent a little on my frustrations with Lab Corp. 

Dear Lab Corp,  you have a job to do and I'm sure you know what that job is:  you test blood, urine, and poop samples for doctors so that they can determine the best courses of treatment for their patients.  I've been a customer of yours for about 10 years now, only because there's really no other labs in the area that I can go to to have these services performed, unless I go to the hospital.  Lab Corp, you know that it is not ok to have customers--paying, sick customers, or even screaming children--waiting in your cramped, not-enough-seating waiting room for two hours.  That's not OK at all.  I have to believe that you know that's not OK.  I understand that you're probably a bit understaffed.  I get that happens sometimes. But for 10 years?  Ten years of being "understaffed" just doesn't sit well with me.  And I'm saying, that I'm not buying it anymore.   

Anyhoo, my venting pretty much describes my dilemma.  I went to Lab Corp, waited for an hour.  There were still 20 people before me, and they'd only serviced three people since I'd entered the waiting room, one of which was a four-year-old girl, screaming bloody murder from one of the drawing rooms. If I hadn't known any better, I would have thought she was being tortured by a chainsaw.  One of the waiting customers asked how much longer the wait would be.  One of the Lab Corp Technician's responses: "It's going to be a while. We're about to go on lunch."  And that was my queue to get up, cancel my doctor's appointment, and leave.   I was never going to have my labs done in time to see my nephrologist. And as much as I would love to blame this on Lab Corp, I should have penciled in time in my schedule to wait two-hours to get my blood drawn earlier in the week, not at the last possible minute. 

Basically, I'm a little scared.  When I called to reschedule, the only opening the nephrologist had was March 13.  Will I make it until then, is the question that's been running through my mind.  I'm not thinking I'll just drop dead (very possible though, for anyone really), but now I won't know how much worse my kidneys are getting.  How much lower is the GFR?  How high is my blood pressure (I stopped checking again. OOPS.)?  Am I feeling tired because of my disease or because I'm not getting enough sleep?  Am I eating less?  Why is my eye twitching? Is my face swollen?  Do I need dialysis already? Am I OK? 

Right now, I'm in this phase where I just want to get the transplant over with because the thought of my organs dying inside me is about to drive me crazy.  And now, because I'm STU-PID, the thought of not knowing how fast my kidneys are dying...that's whole 'nother level of insanity. 

UPDATE:  You know, I'm an optimist.  Ben says it's one of the things he loves about me. So I just can't end this blog post without something positive and without thanking my sister, Jocelyn, for starving herself and undergoing five hours of tests last week.  Thank you, Jocelyn.

She heard back from the doctor's today, and it sounds like she "passed" the first round. Woohoo!  She has one more round of testing and meetings and then I suppose we'll know if she's really the best match for me.  Couldn't get through this without her, Ben, and my two best friends in New Jersey.

Thursday, February 14, 2013

"And I owe it all to you..."

"I've fallen in love many times...always with you."

February 14, 2012
One Year Ago
I anxiously tried to pull up the lyrics to "I've Had the Time of My Life" on my phone's web browser.  It finally loads and we both lean across the table, our foreheads touching to scan over the lyrics.  "Which one's the man's part?"  "Do you know the chorus?" "I can probably fake it through some of these verses."

I love Dirty Dancing, but in this moment I wished I'd loved it enough to commit every line of this song to memory, so that I could teach you, so that we could fulfill the wish of the woman sitting next to us at dinner. This woman, her husband, her husband's brother, and his wife, have been with each since they were 14 and 16 years old. They were celebrating a lifetime of love and laughter with champagne and strawberries and expensive steaks. And they graciously invited us to join in, with complimentary champagne and toasts to what they hoped would also be a lifetime of love and laughter for us as well.  Then the woman begged us to sing the anthem from Dirty Dancing, in front of about 60 other people, drinking and singing along with the most unexpected enthusiasm, in one of the most unexpected places--a historic restaurant, inn, and piano bar in Old Town.  

We chickened out at the last minute, but joined in with the others during Footloose.  We raised our hands and clapped, smiling and every so often, shooting a look at each other silently agreeing that "This is awesome." 

We had such a good time that by the time we left, my birthday was nearly over. It was basically the 15th of February.  To our surprise, the garage where we parked the car had closed for the night.  There was no panicking, no complaining, no worrying. We simply started walking, hand in hand, up the street, lined with lit trees to the metro station to catch a cab home.  It was cold out, but I'd never felt so warm with your arm around me.  It was late, but I'd never felt so refreshed and awake.  It was our 7th Valentine's Day together, but it still felt like the first.  The difference? I loved you way more on the 7th Valentine's Day than I did on the first. And you can bet I love you more today than I did last Feb. 14.


Ben, you've heard from a lot of people that it must be hard dating someone with a birthday on Valentine's Day.  Well, you make it look easy. Thank you for honoring me in a way that is most uniquely you on every birthday and Valentine's Day for the past eight years.  And in case you didn't know it, I am still  psychotically obsessed with and in love with you.  It's kind of ridiculous. Happy Valentine's Day.

Ben, Feb. 13, 2013, with a semi heart-shaped egg in a basket.  I did a do-over with heart shaped pancakes.

Wednesday, February 13, 2013

Wedding Wednesday: The WE in Wedding

"If two stand shoulder to shoulder against the gods,
Happy together, the gods themselves are helpless
Against them while they stand so."
~Maxwell Anderson

If you're planning or have planned a wedding, then you've probably heard the common refrain that many couples foolishly spend more time preparing for the wedding, and not enough time preparing for the marriage.  It's basically a warning to engaged couples to not forget about the rest of their lives.  Yes, after the wedding, there is...real life

Well, for today's "wedding planning," Ben and I completed our required premarital counseling workshop.  Getting married in a church usually comes with a bunch of rules about decorations, the use of real flowers and rice, and there's also the rule that each couple has to complete anywhere from a few hours to a full month of premarital counseling with a religious officiant or marriage counselor.  

For some people, I know the word "counseling" can seem scary, it makes it sound like there is something wrong with the way your handling things in your relationship.  And to that I say, nobody is doing everything right in their relationship.  And if you think you're doing everything right, then that means you're probably biting your tongue a lot and I don't want to be around when things explode.  One thing I've learned from my 7 years with Ben:  everyone is annoying, everyone is crazy, and everyone is selfish.  If for one second you think you're above all of that, then you're probably the most annoying, selfish and craziest person in the relationship.  

I think for many couples, they don't experience this side of their significant other before wedding.  Fortunately, or unfortunately, depending on how you look at it, Ben and I have seen this side of each other because not only have we been dating for a while, but we live together.  Through the workshop, counseling, or maybe even meeting with a mentor a few times a month couples can learn how to cope with their partner's annoying, crazy, and selfish habits when the fancy clothes are put away and the wedding gifts are opened, but also to learn how to work on your own flaws.  And really those are the small things. 

But I think planning for a wedding does teach you some things about marriage.  For me, it's the first time that I've had to really make decisions with Ben. We made a big decision together when we decided to move in together, but other than that, I've always felt like the other decisions we made together didn't have much weight.  I think Ben said it best when he said he feels like getting married validates us, makes our decisions together and our lives together much more serious. Not anything we can just back out of when we feel like it. And honestly, I do think a switch flips over when you get engaged that lets you know "Ok, this is serious. I can't just back out anytime I want now."  

And secondly, planning a wedding together really enforces what it means to have your partner's back, and for them to have yours as well.  So guess what.  Not everyone is as enthused about our wedding plans or the decisions we're making.  Crazy, right?!  Well, there's more. Listen in...not even everybody LIKES all the things we're doing for our wedding.  Soooo weird, right?!  Since we started planning our wedding we've gotten every reaction in the book to some of the decisions we've made.  Everything from "Oh, awesome!" to "Really? Yellow? Hmmmmm."  And we can always count on my mom and dad for a Lil Jon worthy "WHAT?!" as a reaction to just about everything we plan.  Lessons learned?  Except for this blog space right here, we've decided to stop discussing our wedding plans as much.  But more importantly we've learned to stand by each other when we're criticized or praised.  I can tell you, some of the moments where I've felt the most loved and cherished have come from when Ben is sticking up for me.  A few days ago we got into a conversation with my parents about why we're doing a "first look," i.e. seeing each other before the wedding ceremony.  Que the "Lil Jon WHATS?!" from both my parents.  

I felt awkward and under pressure to cave to their beliefs.  What if I made the wrong decision to do this? Then Ben reminded me that that it wasn't just my choice, but our choice.  I glanced at Ben, and he put a stop to all my panicking. "We just really like the idea of meeting up beforehand. It fits into what we're trying to do," he said.  And with that right there, my confidence was restored. Ben asked me a few days ago, what I was looking forward to about being married. And I'm looking forward to a lot of things, but I like knowing that Ben will always support me. We won't agree on everything. Won't. But I like the idea of making more serious decisions from here on out, some easy and some difficult, and having someone standing behind me saying, "It's OK. We're in this together."  

Monday, February 11, 2013

Interview with a Vampire...or Sister

"Sisters annoy, interfere, criticize.  Indulge in monumental sulks, in huffs, in snide remarks.  Borrow.  Break.  Monopolize the bathroom.  Are always underfoot.  But if catastrophe should strike, sisters are there.  Defending you against all comers."  ~Pam Brown

It's been one whole week since I wrote anything of substance related to kidney disease or transplants. I was beginning to wonder if I was even having a transplant anymore!  But the best reminder is that my sister is going through this whole process with me.  So, I guess I am having one. Whomp, whomp :-/

Tomorrow, Dec. 12, I'm returning to Inova Fairfax Hospital for breakfast cross-match testing, and the day after, my sister Jocelyn is going to the hospital to do a series of tests to determine A) if she's healthy enough to give me her kidney; and B) if she's the best match for me.  

Before being diagnosed with this disease, I never thought much about the option to donate anything..blood or tissue related.  I've known for a while that I cannot donate blood, due to my exposure to Mad Cow Disease while living in Germany with my parents.  And I'm not listed as an organ donor on my driver's license.  I know. I suck.  But I'm thinking of changing it!  Typically, listing yourself as an organ donor on your license ensures that if you're in an accident of some sort that leaves you incapacitated or dead, hospitals will harvest your organs for transplant.  But after learning that organs from living donors have the best chance for prolonged function and have a lower risk of rejection, I started thinking about what it might be like to be a living donor, what type of person would want to make this commitment to change someone's life for the better, what type of person would literally give of themselves so that they could give someone a better, healthier existence for the rest of their time on Earth. 

My 20-year-old sister would appear to be that type of person.  She has kindly offered to share a few thoughts with the readers of this blog (however many or few there are!) on why she's volunteered to "audition" for transplantation and how she feels about it.

"Before signing up to test as a donor I didn't know much about kidney transplants. As soon as the possibility of me being a donor began to draw closer, I started to research things about it on the internet, like the survival rate, and I would read the brochures about donors that Jewel would get from the hospital.   I would give my sister a kidney because there is no other option.  If she doesn't get a kidney she could die, or at the least live a very unpleasant life. And neither would be the best for me, her or my family.   If I'm a match, I'll be happy because then i'll stop having to worry about if i'm not a match, and what is going to happen to her and our family if she has to actually wait for a kidney.   I want to get the process over with as fast as possible, but im worried about missing classes and dance practice. Which although in dance i'm a fast learner, in school it really helps being there to learn the material.  As far as the surgery goes,  I'm not worried or nervous about surgery or anything.   I just want the operation to go well, and I'm hoping that my kidney syncs with Jewel's kidney. The only thing I'm nervous about is how much school I'm going to miss. I have a job.  I'm a part of a team and a club and I have work for classes that i need to take care of. i just don't want recovery time to interfere with that too much. I've heard a wide range of times for recovery.  I just hope it only takes 2 weeks max.  And then there's the wedding planning. I'm Jewel's maid-of-honor.  Being a bridesmaid is going okay.  I just wish Jewel would stop pretending she wants me to help when she clearly has it all under control."

And there you have it!  That's my 20-year-old sister. 

UPDATE:  So we crossed our fingers and said a prayer, but alas, the blood test results are in for Ben. And he is....not the same blood type as I am. What does this mean: he's not completely ruled out as a potential donor, because it's a two-pronged test that matches your tissue type also. However, he's not at the top of the list either.  We were sad for a little bit but on the bright side, instead of Ben spending the next few weeks getting over his needle phobia, he can prep his "Alfred" skills, since he'll kind of be at my beck and call for about a month after the surgery.  I mean that in the best way possible, Ben :)

Saturday, February 9, 2013

Things That Never Change

I have had kidney disease for 10 years now.  The day before my 26th birthday (Feb. 13) will be the anniversary of that first biopsy that confirmed to the pathologist that I did in fact have focal segmental glumerulo sclerosis.  If you've ever had a chronic illness, you'll know that after 10 years, some things just don't change.  

You still ask why.  You still wonder if it will be OK. You still wonder if it would be better if you just die. You wonder if anyone understands.  You start to think people will never understand. You know most people close to you, don't understand.You know the proverbs and the quotes, and the sermons are true-- that the strongest steel has to pass through the hottest fire.  You know that this will make you stronger, wiser, better in the long run.  You wonder if you'll make it this time.  You wonder if anyone cares.  You believe no one cares.  You force yourself to believe that you don't care if anyone cares.  You pray. You get angry, with God and with yourself. You curse.  You want to be surrounded by people.  You want to be around no one. You want more friends. You want to be alone. You have to be alone. You are alone.  You explain your disease to someone who asks. You lie, and say you're OK.  You don't bother telling the truth anymore.  You believe no one wants to hear the truth. You know no one wants to hear the truth.  You laugh so hard sometimes you didn't think something could be so funny.  You cry so hard, that you didn't know you could be so sad.  You want someone to hug you.  You want to just curl up in a ball and sleep forever.  You want someone to understand. You want someone to be genuine.  You want someone to call. You want real friends. You want none of those things.  You want to disappear.

What I've learned about being sick: there is no way to escape the feeling that you are not completely alone; there is no easy way to communicate what you want or need; and there is no way that anyone will ever understand what you're going through.  I've been going through this for a decade now.  Nobody in my immediate family and none of my friends have a chronic illness. Nobody gets it.  And, nobody probably, hopefully ever will.

Friday, February 8, 2013

The Last Week of 25

Next Thursday is my birthday! Yay!!

I've been reflecting on the past year, and thinking about my last week as a 25-year-old woman.  Growing up, I thought 25 would be the age where I "had it all."  And at five to ten years old, "all" meant a car, a house, a husband, some kids, and a job. I was not surprised when last year, I entered the 25th year, and I was two for five.  Actually, I'll still be two for five come next Thursday.  The wedding's not until June, and buying a house? HA!  Right.

Anyways, I was a naive little girl.  Houses require savings.  Husbands require years of investment.  And kids require a special quality that I don't happen to possess right now.  Which brings me to my pre-birthday thoughts, leaving 25 and moving on to 26.

  • At almost 26, I am without a doubt, still very selfish. And I still very much value my sleep and being able to do just about anything I want to whenever I want to. So, year 26 probably won't be the year for children if I have anything to say about it.
  • I've been at my job for almost four years now. Wow! That's a long time, to me.  I was hired as soon as I graduated college and was very thankful to be hired, in pretty much my dream the time.  I love working where I work, and there are so many people who have been there for 20, 30 years or so.  I guess I just wonder if I have the desire to be a lifer there like everyone else. Year 26 might be the year to think about trying something new.
  • I'm no longer as passionate about going to graduate school as I was at say, 24.  I still want to go, but I guess just not right now.  Plus, sh*t happens. Gotta get my new kidney first :/ I can't say 26 will be the year I finally apply, and I'm OK with that.
  • I love living in my apartment  and living the apartment lifestyle. And I love living close to the city and near reliable public transportation.  I don't plan on moving before age 27.
  • I've learned my drinking limit and FINALLY learned to stick to it.  It's two drinks. And I'm sooo happy that it is!  I still like going out and having a good time but I spend next to nothing on alcohol now. Savings!! And I love being the designated driver because that means I get to decide when we leave ;)
  • I'm trying to remember if I felt differently about my family at 24 going on 25 than I do now.  Nope! I still really, really like/love them and I still love going to visit them every weekend.
  • New development: at 25 going on 26, I'm ,90 percent over Facebook.  Yeah, crazy right?  I'm not going to cancel Facebook (yet) and make a big deal about it.  But I did kind of have this revelation one day of just...why?  Why am I on Facebook? None of my real friends even communicate with me on Facebook anymore.  I barely use the social networking site, and I really don't miss it.  Which surprised me considering the fact that I acted Facebook-addicted from time to time. But who hasn't, you know?
  • This happened sometime in October, but I've finally come to terms with the fact that I'm not always going to A) be invited to, or B) feel like participating in every event that my single friends have.  When Ben and I first moved in together, we felt like we weren't getting invited to as many outings with our groups of friends. It hurt that our social lives had changed because we became cohabitators.  But after talking to some "experts" about this we realized that this is a normal shift in dynamic.  And after all, we're not exactly super interested in picking up members of the opposite sex anymore.  If anything, I've learned that we might need to invest in some more "couple friends" who live nearby so that we can do couply things from time to time. 
  • No matter how many friends I may have, how great my family is,  or how wonderful my fiance is, at nearly 26 I've realized that the relationship I have with God is the most important relationship I have.
  • At almost 26, I can say that I don't believe there is a rhyme or a reason for why Ben and I have been able to stay together this long.  Over the past 8 years, I've heard all the explanations for how things are supposed to go.  I've heard that you can't marry someone you met in high school.  You can't marry someone you started dating at 18.  A former boss told me that you shouldn't get married in your 20s because you have to do a lot of stuff.  I've heard you shouldn't live with someone before marriage. I've heard that you have to live with someone for at least five years before getting married or it's not going to work out. When I was an intern, a colleague of mine thought it might be OK for her to tell me that I was never going to marry Ben because we'd been dating too long.  I've been told a lot of stuff about what brings a relationship to marriage, and Ben and I have been asked several times about the secret to a teenage relationship that started the summer after prom lasting this long without it looking like we're just settling for each other. And there isn't a secret or an explanation.  What we have, is what we have.  And you know what? It took me years to be OK with this, for the reasons I named above. I almost bought into the theory of what works for one person and one relationship, will work for mine. People are right, Ben and I had a lot of growing up to do in our teenage years and early, early 20s.  And guess what--we STILL have a lot of growing up to do!  But I suppose the real answer, if there is one, to lasting this long is that we made a commitment at some point  to do our growing up together because we just really, really like each other. After all these years, filled with ups and downs, we still really like each other. And this is what works for us. And we're happy.  My parents dated for six months before getting married. And they're still married. And if they'd bought into the opinions and theories of others, I probably wouldn't even be here!
So more week of 25!  And this post was really long! I apologize, but to be honest, it's been a really long year.  OH, and one more thing: I suppose 26 will be the year that I start living with another person's kidney inside of me! This is weird, gross, scary and exciting.  

Wednesday, February 6, 2013

Wedding Wednesday: Breaks in the Action

Although I'm ready to end this engagement and move on to married life (and new kidney life!), there are perks to having an engagement that lasts 15 months. I haven't always felt that way though. There are a few young women at my church and my job, and also my best friend Zarina, that are recently married. I was really jealous of those women because most of them had engagements that lasted six or seven months!  I was jealous because A) they made it to the big day and were now living out there lives as wives with their new husband; B) they obviously had access to more money that I do, so they didn't have to spend months and months saving for the wedding; and/or C) they didn't feel compelled to invite 200 people to dinner, dancing, drinks and merriment.  I think nearly all of these women had less than 100 people in attendance at their weddings. 

You know one thing I really wished I'd done?  I wish I'd had the sense to save a little bit every month, since the first year of college, maybe high school even, for my wedding. I know some people think it's a bit presumptious to begin saving for a wedding that hasn't even been planned yet, whilst not even engaged.  But the part of me that's staring down reception menus showing up to $100 per plate is now kicking myself for not planning well enough ahead. It's not like I was indifferent to marriage. I've ALWAYS wanted to get married. And I've always wanted to have a wedding. These sentiments have not changed or wavered since I was about five years old.  And I've been dating Ben for almost eight years!! So what was my problem?  People save for college, trips to Europe, houses. Why not start early on saving for a big party like a wedding if you know you're going to have one someday, be it at 24 or 44. 

Anyways, in my perfect world, I would have loved to have a short engagement. In the United States, the average length of an engagment is 15 months. I've heard that when you have a shorter engagement, you don't have time to pull your hair out over or be as picky about things.  But one of my favorite things about taking over a year to plan a wedding is that I haven't been planning things nonstop.  I've had whole months go by since last March where I really didn't do anything wedding related. After making our first big decisions (DJ, photographer and date/venue), Ben and I went to Florida. And I didn't do anything else for a month and a half.  And we've had other lulls, I guess you can call them.  Now that the wedding is inching closer, I can't afford to take entire months off anymore (unless I want to kill myself come May). But last week for instance, we had a bit of a lighter load for wedding planning. We set a limit for how many people we'll invite to the rehearsal dinner, finalized a dinner napkin color, and confirmed that I was going shopping for a flower girl dress for Ben's niece to wear to the wedding. 

Then we set up a long list of things we want to accomplish in February.  And it is long!! Ben and I agreed that this month is going to be devoted to ceremony planning, which we're pretty excited about.  My best friend from college is planning to do a reading that we'll be editing together this month, and we're planning to meet with our officiant, my second cousin!  And next week, we'll be spending a very special Wedding Wednesday at premarital counseling.  I think it's a half-day workshop. 

Our ceremony isn't going to be especially long, but I'm really looking forward to it. I know there's a lot of people who, despite their affections for the couple getting married, just go to weddings for the open bar. And as past and future guest, I hear ya!  Open bar is AWESOME. But I also love being able to witness the union of a couple, both people digesting the meaning of each line of the vow they say as they say them,  learning through their readings  and the officiant's speech what it means to them to promise to look after each other forever. I love seeing the unique fingerprint each couple leaves on the ceremony, from the song selection to the participation of their loved ones.  Ben and I are having a Christian ceremony. But even if you have a civil ceremony, it's the moment of making those promises and vows to one person before a group of people that makes this part of the wedding so special. 

Until next Wedding Wednesday, here's a pretty, pretty picture of the pretty, pretty princess who will be covering the aisle with flowers on our wedding day :)

Monday, February 4, 2013

Living for the Weekends

So today, I'd meant to post an interview with my sister Jocelyn, since she's voluteered to be my donor and since it's her birthday tomorrow.  But I failed. Super Bowl Sunday preparations got the best of me.  It only comes once a year!

Instead, here's a snapshot from my weekend, featuring my super cute flower girl.  I'll post more on our dress shopping experience on Wedding Wednesday. 

Friday, February 1, 2013

"A handful of patience..."

In some of my very first posts, I think I hammered it home pretty hard that I am addicted to planning.  I love just planning out my day, my grocery list for the week, my weekend, my chore schedule, my personal time.  It's like I need to do it.  I've gotten A LOT better about not planning as many things over the years.  Ask any of my friends.  Some might wonder, what's wrong with being a planner?  It's good to have some structure and some idea of what you're going to do with the next day, month or year of your time here on Earth. I wholeheartedly agree.  But speaking from experience, there is a such thing as going off the deep end and developing chronic planner syndrome. 

How do you know if you have chronic planner syndrome? A good indication would be if you burst into tears when your friends show up late to catch the bus to New York for a spring break trip (which you planned, of course).  They were late, so yeah you have a right to be mad. But calm down, there was a bus leaving right after that one. 

Spontaneity has its place in our world.  I know this now.  But I am a recovering planning addict and I have to take things one day at a time.  It's been quite difficult for me, believe it or not, to refrain from...PLANNING MY TRANSPLANT! Yes! Can you believe that?  I know right! Planning a transplant? Who does that? Well, I've been trying not. But it's pretty hard to not stare at my calendar and say "You know what? That week would be a good day for me to have my transplant because then I can meet with the venue to go over the catering menu one last time and then arrange to have my hair trial right before it's time for me to leave for..." And it just goes on and on and on.  Sad, I know.  25-years-old and I'm still learning: I cannot control everything.  Things will happen when they're supposed to happen.

I have to remind myself to refrain from getting frustrated with my sister, my amazing sister who has graciously volunteered to test as a potential donor.  I have to remember that it's not her fault that nobody answered when she called to schedule her appointment.  I have to remind myself that it's OK that she didn't give the appointment coordinator three specifically different dates for when she could do her tests. I have have to remind myself that it's not a big deal that the message she left was 0.7 seconds shorter than the voice mail I would have normally left.  Every, single, day I have to do this.  And it doesn't stop there!  It's sad and I know I need to change if I'm going to stay sane until June. But seriously, if I don't have my new kidney by June I'm going to...just kiiiddding!!  See, I have to check myself every now and then.

Last fall, I participated in a Bible study at my church on the fruits of the spirit. One that I should probably digest more of over the next few months: patience.   I need to partake of a neverending buffet of patience so that I may wait gracefully, trusting and believing that God will make a way, that everything will be OK once I'm on the other side of this mountain of a health struggle.  Sometimes it's good to cry and scream, "UGH, I just want this to be overrrrr! Gaaawwwwd!"  But I'm actually getting better at being a grown-up, and telling myself, "Calm down. We'll be there soon. Now take your iron pill and go watch T.V." 

I do wonder though, will my kidneys wait?  Will they wait for the doctors to finish all their tests, and clear their schedules?  I really need my kidneys to just hold on, just for a few more weeks.  Dialysis is not what I'm trying to do right now.  But really, neither is this situation. 

To remind myself that THINGS ARE HAPPENING, I am officially listed now.  What does that mean?  It means that when it's time for me to get my transplant, my insurance company will pay the other $128,000 of the $140,000 procedure.  Isn't that nice of them?  And it also means that if a deceased kidney comes in (meaning a kidney from a donor who has just died), I could get that too.  So yeah, stuff's happening. 

One of my favorite songs on "Patience" is from Dreamgirls, the musical.  Needing the reminder more than ever now.  Happy Weekend :)