Wednesday, July 31, 2013

Mini-Moon Time and a Blog-cation

My vacation starts tomorrow.  Oh gosh, you have no idea how excited I am.  I don't know why but I am one of those people who is just absurdly obsessed with taking vacations and traveling somewhere for them.  You won't catch me doing a stay-cation.  Vacations are supposed to be a break from the norm.  And you're probably saying, "Jewel...don't all people like vacations."  And the answer  I KNOW people who do not take vacations.  I know some people who haven't taken a vacation, ever, despite having the means to.  I know people who have so much vacation time saved up because they never take vacations, that you would probably want to strangle them if you thought that meant they'd give you their vacation time.  

I am not one of those people. I blame my parents.  My dad was in the military and every summer we took a vacation.  Not just a "school's out let's goof around at home" vacation.  We were blessed enough to travel places, mostly because we were moving so it just made sense to go to Disney World while we move.  And Ben's family was kind of the same way.  They drove across the country for many years, stopping at different places and doing all sorts of fun things.  Growing up with a yearly vacation really warped my sense of reality.  When I first started working, I think within the first month, I sent an email to my friends, alerting them of a group vacation.  The first vacation we would take after I'd graduated and had a grown people job.  We went to good ol' San Juan, Puerto Rico.

The first vacation I took was over a long weekend; it was essentially four days long.  I had just started working and I didn't have that much vacation time but by golly, I was going on a vacation.  Upon returning from Puerto Rico, I was hellbent on planning another vacation.  This one had to bigger.  It had to be better.  It had to be Maui.  I told Ben we were going to Maui.  He said OK. And we went.  That's what I love about Ben. He's not much for planning vacations, but he's always down to go on one.  We make a great pair.  

Later that year (2011) we moved in together.  I knew funds would be tight for a number of reasons.  We were paying a much higher rent for living inside the beltway, closer to Washington, D.C.  And I was secretly hoping/thinking that we wouldn't have enough money to go on a vacation in 2012 because Ben was planning to propose.  Rings ain't cheap!  So when I asked him if he thought a trip to Costa Rica in Spring 2012 would work, I naturally thought he'd be hesitant, because, after all, he was going to propose.  Wrong.  Without blinking an eye, he said "Sure.  Costa Rica sounds great." I should have been happy but I was fuming.  I thought Ben would have said no to a Costa Rica trip if he was really planning to propose.  Little did I know that Ben was planning a surprise, secret proposal.  Like most men should be.  And that was all part of his little game.   We got engaged March 2012, and my Costa Rica plans were scratched because we had a wedding to pay for.  But all was not lost!  We took another 4-5 day vacation in May to Miami to attend my grandparents' vow renewal.  

Which brings us to 2013.  Kidney transplants really do cramp your vacation planning. As I've written about before, Ben and I were planning the most spectacular honeymoon to Santorini, Greece.  Looking at pictures of Greece gave me life some days.  We were so excited.  We kept hope alive that we might still be able to go to Greece, up until about three weeks before the kidney transplant happened.  I made a call to our honeymoon planner, and explained that going to Greece in June was not going to be a reality.  My kidney transplant was coming up and Santorini just doesn't have the hospital infrastructure that I need at this point in my life.  Our honeymoon planner was and is so understanding.  He's been working with us to postpone our honeymoon until Spring 2014.  As many people have said to me, Greece will always be there.  It is one of the oldest countries in the world.

So with our Greece travel plans pushed back, that left Ben and I without a vacation to take this year.  This could not happen.  There's just something about going to a different place, even if it's the most boring place, and seeing something other than the same scenery that I see every day.  It refreshes you and makes you appreciate that scenery that you see every day even more. go to Hawaii.  Ben will agree with me:  there is not enough scenery in the state of Virginia to make me forget how gorgeous Hawaii is.  It should be illegal for a state to be THAT beautiful.  But I digress.

I asked Ben if he thought it would be possible to go on a vacation this year.  He said yes but it had to be a domestic vacation for health and budget reasons.  We reviewed several locations.  New Orleans was one of them.  Acadia was another.  One of my savvy travel friends suggested Lake Tahoe. Every place we reviewed had it's attractive qualities and we want to see all of these places eventually. But nothing really grabbed us and made us feel like we HAD to go THIS year.  Then during a quick search of romantic destinations to visit in the U.S. I came across Sedona, Ariz.  I had never heard of it, but apparently most other people have.  Ever since Ben and I decided to go to Sedona, we've been mentioning it to various friends and people at work and family members.  And all of those people have said this combination of things:  A) that they've been there and it's really beautiful; B) that they haven't been there, but they've heard it's beautiful; or C) that they know someone who's been there and that person said it was beautiful.  Then there was this Frommer's guide: 

"There is not a town anywhere in the Southwest, perhaps anywhere in the country, with a more beautiful setting than Sedona."
Well alrighty then!  When you've only heard great things about a place, that's a good sign that you should plan to visit at some point.  From our hotel, it's a two-three hour drive to the Grand Canyon.  I've never been to the Grand Canyon and the funny thing is I don't actually know many people who have.  Most of my friends haven't been, and most of my family members haven't either.  Except for my new family.  Ben's immediate family went to the Grand Canyon during one of their road trips.  The Grand Canyon is one of the few places that I've heard Ben actually describe with excitement, and he doesn't get excited about anything.  The fact that he's agreed to go with me to the Grand Canyon, despite having been there before, is a BIG DEAL.  

Anyways, enough about where I'm going!  Let's talk about my OTHER vacation.  My blog-cation, aka time off from bloggin.  I've been trying to be a consistent blogger ever since I started this blog.  This isn't the first blog I've had.  I've had others and they all failed because I wasn't consistent.  With this blog, I've managed to keep my promise to myself to post a certain number of times each week.  But I figured I would coincide my mini-moon with a blogging break.  There are a number of things I want to share on this blog, and I just need more time to meditate and journal to fully develop them.  To the readers of this blog:

THANK YOU SO MUCH for coming to my little space on the internet, to share in my trials and triumphs, my whining and rejoicing, my pleasures, pain, run-on sentences, typos, and tangents over the past eight or nine months.  I write for you just as much as I write for myself.  

That's AUGUST.  Stop reading this and go enjoy your summer.  Plan a stay-cation, if you must.  But just this once.

Monday, July 29, 2013

Danny's Top Five-- Kidney Transplant Travel

Have a kidney transplant? And planning a trip?  Do not despair!  Danyelle is back with five tips for traveling with a transplant.  And just in time too! I'm scrambling last minute to pack up for my trip.  When will I ever learn.  Anyhoo, enjoy!

1.  Bring your medicine. Double check to make sure you have enough medicine to last you for your entire trip. And it's also a good idea to pack medicine for an extra set of days.  You never know what can happen!  If you're flying, do not pack your medicine in your checked luggage.  Take it with you in your purse or carry-on bag to the plane.  
2. Hygiene is very important, and planes and airports are filled with germs.  Your first line of defense:  washing your hands!  Definitely be sure to wash them before touching your face and eating food.  If you don't have access to soap and water, hand sanitizer and antibacterial wipes will work as well.  Definitely, add several packs of those to your carry-on bag.
3. Depending on where you're going, definitely check with your doctor to make sure you're up to date on your shots and vaccinations.  And if you have a kidney transplant, make sure your doctor knows where you're going and that they don't have any additional instructions for you.
4. Hydrate, and hydrate safely.  Known countries like Mexico and many in Europe don't have incredibly clean and safe drinking water systems.  For that reason, it's best to drink bottled water at all times. If you're in the United States, do what you feel comfortable with, bottled water or tap. But definitely make sure you're drinking plenty of water, between 1-2 liters, especially if you're going to a place with a warmer climate.
5. Always check to be sure you know health information in case of an emergency.  You never want anything to come up, but sometimes having a kidney transplant can be unpredictable.  First, make sure you scout the area where you're traveling to for the nearest transplant center.  In Jewel's case, the nearest transplant centers are in Phoenix.  This is important to know because not all hospitals have the facilities or physicians to treat patients who have undergone transplants.  Second, look for the nearest hospital.  This hospital doesn't need to have a transplant center, but it will be good to know in case any other problems come up.  And third, keep a list of your medicines and contact information for doctors and transplant coordinators with you at all times. 
And obviously, take lots of pictures to remember the amazing moments! 

Thursday, July 25, 2013

The Blueprint

"Scars are tattoos with better stories."

I hear music in my dreams.  There's a symphony narrating the plot of someone flying or saying what they really mean or winning the lottery.  My eyes flutter open and I realize it's just my cell phone alarm, and I get up and begin my morning prep.  I turn on the shower. The steam feels the room, I undress, flinging what I slept in into various corners of the bathroom floor.  I look into the mirror to tie my hair up before stepping into the tub.  But I pause after my eye catches a glimpse of the black dot on my torso.  This is not a new dot, but I still inspect it as if its appearance is some kind of mystery to me.  

I run my hands over the black, brownish circle, sliding my fingers three inches up higher on my torso to a short and thick brown line, massaging the subtle bump underneath.  I step into the shower feel mixture of warm water and soap glide over my new kidney. Using my fingers, I walk along the five-inch incision, as if it were as if it were a balance beam.  I pause along the jagged path to poke at various rises and falls, numb spots, smooth and thin patches of scar tissue on the incision.  I chuckle at the "baby bump" that this new kidney has created, only this "baby" leans heavily toward the right side of my abdomen.  It doesn't kick but every once in a while I'm hit with a bout of shooting pains on the right side of my gut, which cause me to rub the new kidney as if I'm convincing it to calm down. 

Once clothed, for the rest of the day these various scars get hardly of the attention they received in the morning.  But at work, while working on a report, I stop to think about what I want to write next and reach my left hand up to the right side of my neck and feel around for two little bumps.  Once found, I rest my fingers on the tiny bulges until the next round of phrases comes to mind.  And I start typing again.  

Day becomes night, and it is once again way too late, and I know I will be exhausted in the morning. I begin to fly through my bedtime routine--brushing teeth, washing my face, putting on pajamas.  During each phase, I pause to admire my collection of body art, and I think about how this skin, once covered in a flawless blanket of chocolate pigment, has little chips in the surface, un-perfect crocked lines, uneven groupings of dots and bumps and bulges, and healing cuts.  Like icons on a map, I glide over each one with my hands, to remember how I got here.


Monday, July 22, 2013

What Summer/Life is About

 It is...

A cat nap after work on a hot Friday afternoon.

Frizzy hair and no make-up on a Saturday morning.

Outdoor picnics at a historic Virginia plantation.

Blowing a tire on a gravelly road in the country, spending a Sunday afternoon searching for at least one repair shop that could fix it.

Waiting three hours at bankrupt shopping mall for new tires, eating food court pizza to push back the hunger pangs.

Arriving at family dinner with all the ingredients two hours late.  But a low-country shrimp boil tastes good anytime. 

Being exhausted, sweaty, having frizzy hair, running late. 

A trip to the bank, a boring work event, a birthday party, early Sunday morning church, a blown tire, riding with the windows down, good seafood, good people.


"A life without love
 is like a year without summer."

Swedish Proverb

Friday, July 19, 2013

Faith Through Hearing: The D.V. Philosophy

"Now listen to me, you that say, 'Today or tomorrow we will travel to a certain city, where we will stay a year and go into business and make a lot of money.'  You don't even know what your life tomorrow will be!  You are like a puff of smoke, which appears for a moment and then disappears.  What you should say is this:  'If the Lord is willing, we will live and do this or that.'"

James 4:13-15 (GNT)

When I was a teenager, as a way to cope with my diagnosis with kidney disease and bring some stability to my world, I became a chronic planner.  To this day, I get made fun of by my sisters because of all the pieces of computer paper, journal paper, and sticky notes with scratched out To-Do lists I'd leave around.  They'd be complete with timelines to the second and an estimated amount of time that it would take me to complete an action.  I was obsessed, I was sick, and I didn't know how else to cope.  Actual hours would pass in a day where I'd sit in my room, journal, write to-do lists, and cry.  

I eventually grew out of it. I'm still very much a natural planner.  I wouldn't be defined as "spontaneous" by an meaning of the word.  Have I relaxed over the years? Yes.  I'll usually plan things up until a certain point, and then (in the words of one of Ben's and my favorite songs) let Jesus take the wheel.  And sometimes that wheel leads us to having a really awesome unexpected experience.  

Life is very different for me now.  Not that Ben and I never planned anything before, but now that we're married we have so much fun just talking about the future.  And we talk about these things as if being married means they are automatically going to happen.  It's almost as if when we were engaged or just dating, we weren't sure if these things were really going to happen, because there was always the possibility of an unexpected break-up.  But now that we're married, we've started to think more about things we plan actually coming to pass.  

When I discuss "plans" with other people, I'm always incredibly excited.  Dreaming and imagining is one of my favorite pastimes, as is planning stuff.  But then it's only a matter of time before I start to have a panic attack, and anxiety and frustration creeps into my psyche.  When you've gone through any experience with chronic illness, you know that even the best laid plans can fail.  You've lived through it.  You've seen dreams that you hoped, believed, and just knew would happen, shatter right before your eyes on the rough, gravelly concrete known as reality. You think about what it felt like to have that happen, how broken-hearted you were.  You wonder, what's the point.  When you have a disease with no cure, you feel like you're constantly in a state of limbo, waiting for the other shoe to drop...or organ to fail. Why even plan or dream of anything in the future?  We can't predict what path our lives take. Only God knows.  And God knows me so well. 

This week of marriage, just as Ben and I passed the one month mark, was spent discussing our money, and what we want to do with it going forward.  Like most young married couples, there's talk of houses and traveling and emergency funds.  Unlike many married couples our age, there's talk of medical bills and health insurance and what if IT happens again.  As excited as I was to have a joint budget and the same ideas on how we manage it, I was also nervous and frustrated with how we'd deal with another major surgery like this.  I'd been studying this devotional on my Bible app called "Battlefield of the Mind" written by Joyce Meyer.  On one of the days she wrote about a man who was big on saying D.V. after talking about everything he hoped to do for the next day, week, month, year, or even life.  D.V. is an abbreviation for "Deo volente," which in Latin means "God willing."  The man described his D.V. theory as "having great ideas" about things he wanted to do or see, but D.V. was a reminder to him that he just wanted his ideas to in line with what God had planned for his life.  

I so want to subscribe to this D.V. mindset.  Because it's been a struggle for me to be able to dream freely or even plan what I'm going to eat for dinner without thinking, "Well, that could happen, if my kidney doesn't fail."  What I know for sure is that God says He knows the plans that He has for my life, "plans to bring you prosperity and not disaster, plans to bring about the future you hope for."  So there is no need to feel like any idea I dream up will end in calamity.  And what I hope to remember, as I dream and plan with Ben and as we talk about our lives together:  even if something we really want falls through, we can still rejoice.  Nothing that we want for ourselves is ever better than what God wants for us.  And sometimes, what we want and what God want are the same thing.  
I really wanted my sister to donate her kidney to me. We had both planned on it.  We both wanted it to happen in February!  As you know, it didn't happen that way.  But you know what:  what God had planned for me and my dad, and the way it happened, and the timing of it all, I wouldn't go back and change one single thing.

"My heavenly Father, please help me live today.  Whether I actually say the words D.V. or not, remind me that Your will is more important than anything in my life.  Help me not to allow Satan to get me thinking so much about tomorrow that I fail to live today in a way that pleases You.  I ask this in Jesus' name.  Amen."

Wednesday, July 17, 2013

No Money, Mo Problems

Two and a half months with the Kidney

"See Imma tell you
Like Wu told me
Cash rules everything around me
Singin dolla dolla bill, y'all
Singin dolla dolla bill, y'all"
 The one and only Wyclef Jean

I've been meaning to write a post about the cost of kidney transplants for a while.  But right now, the timing is perfect because last week I received my bill for my hospital stay, anesthesia, actual surgery, my dad's portion of the surgery, and my medications that I took during the hospital stay.  And I had been waiting for this bill, watching the mail box like a dog sitting by the storm door of a house watching cars pull out of drive ways and the wayward basketballs of bad kids bounce into our yard.  But then, at one time I thought, "Maybe it's not going to come.  Maybe they're not going to charge me for the surgery. After all, I've already paid so much money to doctors over the past year."  

Lesson #1:  It takes a while for medical bills to actually get passed on to the patient.  In this case, it took roughly two months after the surgery for the hospital to send me my bill.  During that two months, the hospital financial division drew up the numbers and exact costs of everything and negotiated with my insurance company.  My insurance company told them what it was going to pay for the surgery.  And then what was left over was sent to me.  

I had an idea of what I would have to pay, and I also had an idea of the worst case scenario.  
Lesson #2Become really well versed in what your health insurance policy dictates.  The health insurance we have through my job requires, among other things, a 10 percent coinsurance on any medical procedures like outpatient and inpatient surgery.  At the first meeting on Kidney transplants that Ben and I ever attended, we were told how much we should anticipate paying.  MATH TIME!  And yes, I'm using a calculator.  I'm a writer, not a math-er.

The entire transplant was estimated to cost $140,000.  Yep.  Staying alive is expensive!  And the sad part is, if you don't have insurance, this is pretty close to what you would have to pay.  Luckily, most hospitals have some kind of financing program and help for those who can't make the payments.

Per my insurance's coinsurance policy, 10 percent of $140,000 is $14,000.  Wow!  A new car, or a really well planned, small wedding.  

That's what added a whole other complicated layer to this whole transplant thing.  Ben and I were planning our wedding, reading up on the average costs of weddings in the D.C. area.  How much is the average wedding in the D.C. area?  $32,500.  And that total right there is for if you invite 100 people to your wedding. Ben and I invited 235 and ended up paying for 180.

"All I see is signs. All I see is dollar signs. Money on my mind. Money, money on my mind."
The good thing is that it's really hard to be concerned about bank accounts and piles and piles of money flying out the window, when your major organs are on the brink of imploding inside your body.  Now, don't get me wrong.  There were plenty of times when I turned to Ben and said "Maybe we should just not have the transplant, save the money, and travel around the world together."  Don't judge me. I was sick.  There was toxic waste floating around in my blood and it was clouding my judgment. 

So my insurance plan has the coinsurance policy, but, like most other plans, it also has an out-of-pocket maximumYour OOP max would be what a plan participant pays within a year of the plan.  For example, if your OOP max is $1000 each year, then once you pay $1000 in procedures, hospital visits, etc., you won't have to pay anymore.  Now most people, don't reach their OOP max, because most young people like me are healthy as a prize winning horse.  So if you go to the doctor only once a year, you're not going to hit your OOP max.  

But lucky for sick people like me, once I hit my max (which has either already happened or is happening in the next week due to my ER visit) I can have all the free surgeries I want!  So YAY for me!  I might just get all my organs replaced.  Like a full body tune up.  

Lesson #3If you don't have an emergency fund, start one right now.  So you want to hear something dumb and immature and idiotic and stupid?  Ben and I started our emergency fund in January.  I know....we're STUPID.  Now, that's not to say that we didn't have savings. Before I moved in with Ben two years ago, I had built up a considerable amount of savings because I lived with my parents.  They say you should have three to six months salary (or rent or living expenses depending on your school of thought) saved up in a bank account for emergencies.  Well I definitely had that.  Like I said, I lived with my parents.  But I wasn't necessarily saving all of that up for "emergencies."  I was saving it so that I could move out of my parents' house and afford security deposits, first month's rent, and maybe even some new furniture.  Then once that was taken care of, Ben and I got engaged, and I decided to use most of it to pay for our wedding.  So when all this stuff went down, and there was a strong possibility that I was going to have to go on unpaid leave for some time after my kidney transplant, Ben and I immediately started saving to cover my half of the rent and my living expenses if I had to take unpaid leave.

LUCKILY, I didn't have to take that much leave, and was paid for all of the time that I took off work.  But what if that hadn't been the case?  It's the "what ifs" that always get you.  What if...the car breaks down?  What if...I don't have enough paid leave?  What if...YOU HAVE TO HAVE A KIDNEY TRANSPLANT???  And that's where emergency funds come in.  

Lessons Learned:  Having a major surgery really rocks your mental state, emotional state, and financial state.  There are so many doctor's reports, lab results, and procedures to schedule, and then bills to pay.  And your family and friends never want you to have to think about the money because "This is your life," they always say.  You're life is more important than some money.  Please. In all honesty, when it's happening to you, and your spouse, the thought process doesn't always go like that.  Because after the surgery,  it's you who is responsible for the remaining balance.  It's you who has to figure out how to make ends meet.  It's you who has to count the zeros.  Yes, you know your life is more important than dollar signs.  But what about the rent and all those wedding vendors you promised to pay off?  

Throughout this process I've come to have a new appreciation for really good health insurance plans.  Because those plans make the difference between paying $14,000 for a kidney transplant or just paying $14.  

Ben and I have become super serious about establishing a household budget that we can live with.  Budgets can be hard because you can't have everything you want. But we think we've come of with one that still allows us to save for the future, pay down medical bills, and still invest money in the things that we love doing.  And now that the wedding is over and paid off, we are more committed than ever to building up our emergency fund.  

Lastly, more than ever I just do not understand those people who are against Obamacare.  Ben says only the opponents call it that.  I'm a supporter and I call it that just because I feel like it rolls of the tongue a little easier than "Affordable Care Act."  Something just tells me that most of those people against it are super healthy people who have never had any problems ever in their life, or just a-holes who think it's OK for sick people to not have access to insurance.

I'm gonna go with option C:  that they are just a-holes all around.

Monday, July 15, 2013

Living for the Weekend: Birthdays, Sick Days, Name Change

Whew, what a weekend.

  • Top Left:  I made Ben's birthday cake, from scratch.  It's the classic yellow with Chocolate Frosting.  And so far, this is the best yellow cake from scratch that I've ever made.  For five years now I've been making yellow cakes that were really dry, or just missing the mark.  This recipe that I found on Bakerella really brought me closer to my dream of the perfect, Box quality, yellow cake from scratch.
  • Bottom Left:  My kitty! Burton!  When you have a cat you're just obligated to take multiple random pictures of that cat.  
  • Top Right:  One of the best things I've discovered, is making homemade sausage.  It's soooo easy and cost effective. I cooked up some chicken sausage that I made back in May but froze in my freezer.
  • Middle Right:  A beautiful sunset from my friend's roof top at the outdoor happy hour she hosted.  I didn't drink anything but it was probably for the best because....
  • I went to the hospital the next day (bottom right).  Oops.  I'm OK now, but Sunday kind of sucked.  And I felt like crap for the entire day, and half of today.  Gotta love the IV picture.  I've got a bunch of them.  Just like with cats---if you have multiple IVs put in, you're kind of obligated to take pictures of every single one.  

P.S.  I've been married for a month!  And in case you haven't noticed,  I officially changed my last name.  As a child, I always thought/knew that I would just take my husband's last name.  But then once I started my career path, I realized that I really like my maiden last name.  Actually, I love it.  It really just goes so well with the rest of my name, first and middle.  And you want to know something funny?  I was always secretly jealous of hyphenatesLike, how come they got two last names and I only had one?!  I was even jealous of the hyphenated first names, like John-Paul or Jessie-Lynn.  Well, guess what?  Dreams do come true.  I am finally....a hyphenate. 

Friday, July 12, 2013

It's Ben's Birthday!

It's my hub-hubs birthday!!!  Did you like that? Hub-hub.  Yeah.  I went there.  

It's Ben's birthday y'all.  Another July 12 has come and I'm so thankful that he's made it to see another year.  

The Ashmans!

Also, how lucky is Ben that from now on he gets to celebrate his birthday one month after our wedding anniversary?  Also, ALSO, in a few years he'll be the most spoiled husband of them all.  Father's Day, our wedding anniversary, and his birthday, all within weeks of each other.  This must be payback for having to give me double presents since I'm a Valentine's Day baby.  

I already had one challenge to complete:  make Ben another from-scratch yellow cake with chocolate frosting.  The verdict will be handed down this evening after dinner (please be moist Duncan Hines/Betty Crocker quality or something close to it!). The second challenge I gave myself...make another list.  Yes. I just love them and I can't live without them.  So here goes. My favorite "Ben memories" from the past year: 

1.  Ben's last birthday party.  Ben is the youngest child in his family. I'm the oldest in mine, which means there's always going to be a part of me that wants to baby him.  So when he whined to me about not having a birthday party in a while, I said to myself "This poor, helpless baby needs a birthday party.  Not just any party. A super-hero party."  And that's exactly what I did.  I had lots of help from my siblings and siblings-in-law.  And we also had a moon bounce.  All babies like moon bounces.

2.  Ben's diet when I went to Kazakhstan for a week.  He was on what most people call the pizza diet. 

3.  Ben's weird last minute zombie Halloween costume.  It was one of those situations where you go to the Halloween store and most of the stuff is picked over, so all that's left are weird, last minute, zombie outfits.  

4.  Ben picking out and designing our save-the-dates.  I really had no idea that Ben was so into paper products.  He did an excellent job though.  

5.  Ben getting really into picking out our wedding stationary.  I think he's found his calling.  

6.  Ben passing the only McDonald's on the way to our four-hour kidney transplant consultation.  OK so, passing the McDonald's wasn't my favorite thing.  But it's one of those situations where you can't help but laugh after the fact.  Never trust Ben when he says we can sleep in a little.  Lesson learned.

7.  Ben getting his blood drawn.  He really wanted to donate his kidney to me.  We aren't a match but I'm so grateful he tried.  He hates needles.

8.  Ben getting me some Beats!  I may never fully be able to enjoy them though because Ben calls me spoiled every chance he gets.

9.  Ben making chicken and waffles for Christmas breakfast...sort of.  My mom was being a helicopter kitchen mom.  So I'm not even sure if Ben got to fry any pieces of chicken by himself.

10. Ben joining a group at church.  I was so happy about this because I already joined a couple of small groups and just really wanted Ben to experience my happiness. He joined softball.

11. Ben writing an excellent and inspiring post about sitting in the waiting room during my kidney transplant.

12.  Ben giving the best speech at my sister Danyelle's graduation dinner.  He just has such a way with words.  Writing, speaking, I just love it. 

13.  Ben visiting me every day while I was recovering from surgery at my parents' house.

14.  Ben saying his marriage me of course.  Such a great feeling!  He just seemed so sure of everything, which is always nice to have in a spouse.

15.  Ben getting really engrossed in antiquing in Charlottesville during our micro-moon.  Maybe that Nazi can opener will be there when we go next time.

16.  Ben helping me clean my exit site when I had my PD catheter placement.  

17.  Ben's daily "cat-squish" sessions.  This is why the cat is plotting to scratch our eyes out one night.  Because of these squish sessions.

18.  Ben's excitement about receiving a rice cooker as a wedding gift.  

19.  Ben starting a fire on our first camping trip.  It was really windy and the wood was kinda wet.  It also started to get kinda cold. So, thank you.

20.  Ben making the very convincing argument that we should eat a dozen Krispy Kreme donuts in one sitting.  

And guess what--Ben's birthday is actually the day before Krispy Kreme gives out a dozen donuts for a dollar in honor of its own birthday.  

Ben this is the eighth year that we've celebrated your birthday.  The first year that we've celebrated it while married.  May God bless you with many, many, many, many, many more years.  I meant what I said a while ago:  I really just can't wait to see what you look like when you're old.  Like old, old. 

Wednesday, July 10, 2013

Faith Through Hearing-- True Story

"But after you have suffered for a little while,
the God of all grace, who calls you to share his eternal glory in union with Christ,
will himself perfect you
and give you firmness,
and a sure foundation."

1 Peter 5:10

Monday, July 8, 2013

Transplants and the Great Outdoors

During the wedding planning process, Ben and I set up three different registries.  We knew that most people probably wouldn't even go onto our registries and that they would just give cash or checks.  And most did.  But, just in case we had some "gift givers"--and by that I mean people who enjoy the registry process, going through the list, picking out the items--we selected some gifts from Macy's, Amazon, and a honeymoon registry.  Our Macy's registry was our "grown-up" registry, which is what we like to call it, because we asked for things that grown-ups need. Like drinking glasses and an awesome rice cooker.  We also asked for a Kitchen Aid Stand Mixer Ice Cream Attachment.  That counts as something grown-ups need, right?

Our Amazon registry was basically filled with stuff that we could buy to facilitate our hobbies.  Spending time outdoors is one of our favorite things to do, along with traveling.  How original!  A married couple who like traveling and going outside (OK I'll stop now. I know sarcasm doesn't always come across well in print).   So we asked for some camping equipment of our own. We got a lot of great gifts from our friends and family members and this past weekend we decided to break in some of our new gear. 

Before we left for the trip I was kind of nervous because this was the first major trip that I've done since I had the transplant.  We went camping in Virginia of course, so it's not like I went on an eight hour flight.  But when you have a transplant there are certain things that you try to avoid:  germs, germs, bacteria, bug bites, animal bites, oh and also bacteria and germs.  Spending the night outside, eating outside, sleeping outside proved to be my first big challenge since living on my own post-transplant.  So I came up with a short list (and added some pictures) for the bacteria-conscious and low-sodium diet campers out there.

Tip #1:  Un-can your beans.

Ben and I wanted to keep things easy for this trip. I know some people like to make gourmet meals with fancy stoves for their camping trips.  But Ben and I didn't actually request a fancy stove on our registry.  We decided to go with the free option of cooking things over the fire with sticks and a pan.  So baked beans and hot dogs were on the menu.  There's really no way to get around the processing of hot dogs.  Those are just one of the few things that really taste much better the way they're ever they are made.  But I knew that I could cut out most of the sodium sodium, high fructose corn syrup, and other additives that come with canned baked beans.  So I made my own, basing much of what I used on this recipe.  I started a little late (like the day before we left for the trip) so I didn't have a two-hour block of time to just stand at the stove and stir, like the recipe says. So I put the beans in my slow-cooker for eight hours.  And I have to say, these beans were so good.  I put enough for Ben and I in a mason jar, and froze the rest.  

And yes, behind those beans you can see the box of my new RED Kitchen Aid Stand Mixer.  EEEEEEE!

Tip #2:  Also have wipes.
One of the first things they tell you as a transplant patient is that the drugs we take make us more susceptible to illness.  I take immunosuppressants to keep my body from attacking my dad's kidney.  So I have to wash my hands all the time, and when I can't get to a faucet I use hand sanitizer.  Touching the outside of a tent, then the car, then grass, then the dirty picnic table, then eating hotdogs with my hands was not gonna be the right way to go.  Ben and I bought roughly nine liters of water with us on the trip to use for drinking (I have medicine to take, so I drink a lot of water), washing, and whatever else comes up.  I also made sure to pick up three different types of wipes:

I picked these anti-bacterial wipes along with a travel pack of Clorox bleach wipes.  

Tip #3  Pack extra medicine.
 I made sure I had enough medicine to cover me for a while.  If I had forgot the wipes, oh well.  Forgot the tent, oh well.  Forgot my medicine?  That would have been an "oh sh$%" moment.  Another thing the doctors and nurses tell transplant patients:  always take your medicine.  Missing a dose, could mean rejection.  And that's something that seriously scares the crap out of me. I want to be able to go on trips and have fun like normal people do.  But I can only relax and have fun when I know my medicine has been taken or that I at least have extra in my purse.  People who don't take a daily pill for an illness don't necessarily get how missing a dose can just completely ruin your mood.  Even Ben, who's the most supportive husband and even reminds me before bed to take my medicine, has had moments where he's asking "Do your really need it?" to avoid having to turn the car around or stop whatever exciting thing we're doing or about to do.  The answer is always "yes, I really need it."  Camping or not, it's my responsibility to protect my body, and protect my dad's investment in my life.  Who cares about camping if your kidneys don't work?  Nobody, I hope.

Our first camping trip as married people was fun and just what we needed. We're looking forward to taking this show on the road/plane in just 3 1/2 weeks.  Not sure if I mentioned it yet, but we're going camping at the Grand Canyon!  And Sedona, Arizona which I've only heard great things about.  I've never been to either place so this will be my first big adventure, post-transplant.  Here's more pictures from our first trip with our wedding gifts:

We were pretty close to our campsite but we had to stop so that Ben could eat without veering off the road.  View's not bad, either.

Our site, and you can see our tent!  The weather was perfect so we set it up without the rain fly.  From inside the tent, we could stare up at the beautiful sky.  

And at night, we could look up at the stars, which we don't really get to see as much since we live in the city.  Below you'll see our chairs.

Now look at us actually using the chairs!

A good-bye view from Loft Mountain.  These memories come courtesy of all the people who gave us these awesome camping gifts and gift cards.  We couldn't have done it without you.  Thank-you cards are on the way.  It's just taking forever to write them. 

Friday, July 5, 2013

Pill Poppin Like a Boss

Two Months with the Kidney

When I was diagnosed with kidney disease 10 years ago, I had my first experience with taking medicine.  I'd never been one of the kids with severe allergies or asthma inhalers.    I think at most, any medicine I took was maybe children's Tylenol, or Nyquil. And that was enough for me because those liquid cough medicines do NOT taste like cherry. 

The very first pill I had to take to treat my disease was a blood pressure medicine called Lisinopril.  Courtesy of Mayo Clinic, Lisinopril is an ACE inhibitor drug used to treat high blood pressure, and most ACE inhibitors are freaky good at lowering blood pressure.  The story of my experience with Lisinopril is like a Shakespearean tragedy.  It was the first medicine I ever took. It was the first medicine that I got yelled at by my doctor or not taking it.  But she only did it out of love (thanks Dr. Yao!).  I didn't realize how important this was.  At 16 years old, my blood pressures were clocking in at 140/90 (that's not normal).  They were still trying to figure out what was wrong with me because my kidneys were still leaking protein into my urine.  I had to get my blood pressure under control to prevent further damage.  Lisinopril was a main part of my regimen for going into remission.  

After taking it for about six months, one day I realized that I had been taking the wrong dosage for at least two months.  Someone at the pharmacist screwed up (yeah, I'm not afraid to say it.  THEY SCREWED UP) and gave me a pill to take that was twice the amount that I was supposed to take.  I went into a minor panic but then I'd also noticed that once I started taking twice the amount of Lisinopril, the amount of protein in my urine decreased significantly.  That is a good thing.  Protein in the urine is bad, bad thing.  I don't know how, but the Lisinopril played a big part in my getting to remission (where I stopped experiencing any symptoms of kidney disease).  This is why it was a bit confusing to me when six years later I had an allergic reaction to the drug and had to be taken off of it.

In the very early stages of my disease, Lisinopril was paired with Prednisone, a corticosteroid.  Most people with asthma, arthritis, or allergies know about these types of drugs.  They can also help treat the symptoms of kidney disease by suppressing your immune system.  I was on taking about 1000 milligrams intravenously every other day for a while. I was also taking Cyclosporine.  Cyclosporine is an immunosuppressant.  These drugs work by lowering your body's immune system to prevent it from attacking your tissues or organs. These drugs can also make you more susceptible to other infections because your immune system isn't working 100 percent to prevent infections.  

That brings me to present day.  What am I ingesting these days?  

Nom nom nom

Top Left:  That's one of the awesome pill boxes that was given to me at the hospital.  The whole set is all of the days of the week, broken up into single days so that you can just grab a day and go.  Then separated by morning, noon, evening and bedtime.  

Bottom Left:  This is what my set of morning and evening pills kind of looks like now.  I say "right now" because depending on the results of my weekly labs, the amount of pills could increase, decrease, or stop.
  • Prograf aka Tacrolimus:  just your basic anti-rejection drug.  They are the skinny white pills.  I have to take these because no matter what, my dad's kidney will never be mine.  And my body knows that. So if I stop taking this medicine, which tricks my body into thinking my dad's kidney is mine, then my immune system will try to "heal me" by attacking the organ.  That's just what immune systems do.  They keep out stuff that's not supposed to be there, like viruses and infections, and sometimes other people's kidneys.  At one time I was taking 20 Prograf pills a day.  Now I'm down to just six a day.
  • Cellcept aka Mycophenolate: another anti-rejection drug. It's blue and orange. It performs the same function as Prograf.  But, when I started taking it I had to sign a form that said I would not get pregnant while taking this drug.  So when Ben and I decide we want kids, I have to tell my doctors so that I can take something else.
  • Norvasc aka Amlodipine:  It's a round white pill and it helps control my blood pressure.
  • Bactrim aka Sulfamethoxazole:  This is another round white pill and it's used to treat infections.  I don't have any infections that I know of, but I still have to take this.
  • Ketoconazole:  I take half of these white tablets twice a day.  It's actually an antifungal medicine, but my doctors prescribed it to raise my Prograf levels, so that I wouldn't have to take 20 of those pills each day.
Top Right:  Iron Supplement
Middle Right:  These pink pills are Valcyte. I take it every evening to prevent an infection that transplant patients are more susceptible to.  
Bottom Right:  Aspirin. I wasn't allowed to take this before my transplant, but now I take it to prevent blood clots.  

I knew I'd have to take a bunch of pills every day after the transplant.  And it really does get easier.  Sometimes I get scared when I think about forgetting to take a medication, because I know the life of my transplant and my life, really depend on it.  But I know it will happen eventually.  Everyone forgets, at least once.  I'm really looking forward to the day where there's just one pill to take to help protect your transplanted organ. And I'm looking forward to the day when the cost of prescription drugs go down.  This is why I don't go shopping for clothes anymore.  These days, a weekend shopping trip consists of me at Whole Foods or Wegmans and CVS Pharmacy.  Next year, I might be able to add Home Depot to this list.  Because I'm married now.  That's where married people go.  Groceries, pills, mulch. There's no way I'm 26.

Wednesday, July 3, 2013

Fireworks, Family, Picnic

Ahh, the day before a holiday from sweet.  Just knowing tomorrow is not "business as usual," and I don't have to wake up early, make phone calls, and type until my fingers bleed brings tears to my eyes.  Sooo looking forward to relaxing.  Look at me! I had a month off of work, plus a long weekend for my wedding and I'm still grabbing for days off.  And it's not the disease that's making me feel this way.  I'm guessing it's just laziness.

So what is the Fourth of July made of?  Besides fireworks--family, food, picnics, nice weather.  The way life should be.  Get excited for the holiday and take a look at the new flock of pictures added to my Rehearsal Dinner Recap!  Some of my favorites:

 See all the pictures here:  Rehearsal Dinner Recap

 Happy Independence Day! 

(new post Friday)

Monday, July 1, 2013

July 4 and Sodium-- Danny's Top Five

My sister Danyelle is here, with another top five! We've collaborated on some of the best ways to enjoy the upcoming holiday (you didn't forget did you?!) without going overboard on the salt and processed foods.  Here's to enjoying Independence Day, without the high blood pressure!

One of my favorite things to eat on the 4th of July is ribs. To me, these are a must have. We all know the fall-off-the-bone quality that we long for once summer barbecues roll around.  But what about flavor?  That’s just as important.  Most ribs are brined, rubbed, or marinated before being put to the fire.  Then they’re covered in one of the many varieties of delicious barbecue sauce.  For those of us following low-sodium diets, eating or cooking ribs can be a challenge!  If you’re cooking ribs this holiday, an easy way to cut out a bunch of sodium is to stay away from bottled or packaged marinades and rubs.  These types of condiments can be added to Jewel’s list of “processed foods.”  Sure they make infusing flavor into your food simpler, because all the mixing work is done for you.  But most of these premixed seasonings are LOADED with salt. 

Tip 1:  Make your own rub or marinade.  By doing this, you can control how much salt is in the seasoning.  You can even follow a recipe online for ribs, and if a recipe calls for a tablespoon of salt, try using just half a tablespoon.  It’s as easy as that! 

Tip 2:  Leave the barbecue sauce on the side. If you want to be friendly to your low-sodium friends, don’t slather barbecue sauce on the ribs when they come off the grill or out of the oven.  Mix up some sauce in a bowl and let people apply it for themselves.

No July 4th celebration is complete without side dishes.  And my family is big on the sides.  You’ve got so many to choose from:  potato salad, macaroni and cheese, pasta salad, coleslaw.  But watch out for hidden sodium content in these dishes that usually have a ton of ingredients. 

Tip 3:  Serve more simple vegetables. Sides like potato salads usually have a ton of mayo or mustard or dressing stirred into them.  Try incorporating more sides that have vegetables and simple seasonings.  Like one of my favorite things to eat:  Corn on the Cob.  No salt needed there!  It's natural sweet taste is just enough.  Mix chilli powder and lime juice and zest into some unsalted butter for a great low-sodium and flavorful spread for the corn.  Or try grilling a few vegetables, flavoring with some balsamic vinegar and olive oil.  Speaking of vinegar….

Tip 4: Set aside the bottled dressings.  The best pasta salads usually have a thick coating of Italian dressing.  But you can make your own vinaigrettes and dressings to go over pastas and vegetables with just a few simple ingredients.  Most start with an acid (balsamic vinegar, red wine vinegar, or even lemon juice) and some olive oil.  Add in some garlic, herbs, and however much salt you like.  It tastes fresh with, of course, half the sodium!

Lastly, dessert! There are so many things to choose to go along with your 4th of July dinner, but there's nothing better than slicing some watermelon and lighting some fireworks. 

Tip 5:  Incorporate the red, the white, and the berries!  The best thing about the summer is the abundance of fresh fruit and berries.  For a low-sodium sweet trying making a dessert that includes some of the best summer fruits.  Or just eat the fruit by itself with some homemade whipped cream! You can’t go wrong with either option.

I hope these recipes help give you some ideas of what to cook.  Good luck and have a great 4th of July!!!!!