Faith By Hearing: The Promise

Last week at Bible study, we had a great discussion about Sarah (or in some versions Sarai).  For people unfamiliar with the Bible, Sarah was the wife of Abraham, the father of the Jewish people.  Her case was quite special.  God repeatedly promised Abraham that he would be the father of generations; that his offspring would outnumber the stars.  Sounds good, doesn't it?  One problem:  Sarah was barren.  She entered her old age without children.  So much for being the "father of generations," huh?  Just when Sarah and Abraham had pretty much given up, God tells Sarah that she will in fact conceive.  And sure enough, when Abraham is about 100 years old, Sarah gives birth to their son, Issac.  

I've always loved that story.   During Wednesday Bible study, we talked about God's promise to Abraham, having faith, how it's very difficult to trust that God will take care of you and carry out what He has promised to you, even when all the evidence on Earth proves otherwise.  And we also talked about what a privilege it is to in our hard times to just be able to let go, and let God do what he's best at-- making the impossible possible.  

I can relate my current situation with Sarah's story.  Sarah waited FOREVER for that child God had promised to her.  And it looks like I might be in for my own long journey to kidney transplantation. Sarah was probably the first woman to have those feelings of doubt and worry, waiting for something, not knowing if it will ever, ever come.  I definitely know what that's like.  But there is hope in Sarah's story, and so many others' throughout the Bible.  The birth of Issac teaches us that we shouldn't spend so much time worrying or doubting what God can do in our lives.  Her story teaches us that he hasn't abandoned us that He will always come through for us in any situation to give us what we need.  

As part of the study we had to read a few verses and tell which one we could really relate to.  The one I picked was Philippians 4:19:

And my God will meet all your needs according to the riches of his glory in Christ Jesus.

This was one of the verses I read after receiving the news about my sister, and her inability to donate.  I was so angry and frustrated, partly with God, for not giving me what I needed when I wanted it.  But this verse reminded me that in this life, everything works according to God's plan, not mine.  And I kid you not, after reading this verse, God gave me something that is probably so much better than any one else's kidney.  He gave me peace.  And just like that I was filled with this overwhelming belief that everything is going to be OK.  I'll get my kidney, just like Sarah got her baby, when the time is right. 

The End of the Road

"Although we've come to the End Of The Road
Still I can't let you go
It's unnatural, you belong to me, I belong to you
Come to the End of the Road
Still I can't let you go
It's unnatural, you belong to me, I belong to you"

Boyz II Men

I should just start every post with a Boyz 2 Men lyric, right?  Some people say every post is better with a picture, well, I think every blog post might be better with a Boyz II Men lyric. 

Sigh, so yes, we are get-ting there, to the end of the road.  Current GFR:  hovering at 7.5, 8 percent. Current kidney donor:  none at this time.  The decision has pretty much been made for me:  it's dialysis time.  Damn. Never thought I'd be writing those words.  For real though.  On Monday, I'm meeting with a kidney dialysis nurse, and then one week after that I'm making my decision: peritoneal dialysis or hemodialysis.  It's a big decision.  They are two very different methods, but they get the same job done.  

Peritoneal Dialysis looks kind of like this :  I'd have a catheter placed in my stomach.  Then I would connect that line to a bag of "waste collecting liquid" (that's my name for it), and that will do the filtering. Then I drain the liquid out.  I'm unsure about this part, but my dialysis nurse says she has some DVDs to show me that should give me a better picture of what's involved.

Hemodialysis kind of looks like this:  I'd have a fistula in my arm, a connection between a vein and an artery.   During my multiple-times-a-week visits to the dialysis center, I would have a needle inserted into the fistula. That needle is connected to a machine, and that machine collects my blood, cleans it all out, then would put it back into my body. The process can take up to several hours. 

This is not what I wanted at all.  But funny thing, I actually don't have a choice right now!  Well, I do.  And my doctor advised me against that choice.  That choice would be to really believe God for a miracle that I'll get my kidney in the next few weeks.  That path could also lead me to a destination where I'm barely making it on my wedding day, or worse: wedding day is canceled because I don't get my kidney in 2 weeks, and then I end up in the emergency room where they will most definitely hook me up to a dialysis machine.  It'll be like a scenario from "House," where I pass out on the street, then wake up in the hospital, going "What happened?!" And the doctors say:  "Jewel, we had no choice.  We had to amputate...and we also had to put you on dialysis."  And then I react:  "DIALYSIS?! NOT DIALYSIS!" 

Man, I have an active imagination, right?  It's due to all those years I spent as an only child when no one would play with me.  Anyhoo, I'm looking forward to hearing more about these procedures and selecting which one is best for me.

Side note:  I got my blood boosting shot on Wednesday.  The nurse, so sweet, said it will probably takes three shots to get me where I want to be.  She even gave me a hug afterward!  Before getting the shot, the nurse had to read to me every line of the risks and side effects.  I kid you not, one of the side effects was "you could die sooner."  No joke!  In those words.  Usually, for drugs, you expect the typical--headache, fever, stroke, etc.  But this drug explanation spelled out in plain English "headache, fever, stroke, heart attack...oh! and you could die sooner.  FYI."  I started wondering if I even wanted the shot!  The nurse assured me that she's never heard of anyone at our office dealing with any bad side effects.  

So the other night, as I was driving home from Bible Study, I was CRAVING ice cream.  Naw, I thought, I should save my pennies.  Plus, I have delicious pineapple and melon at home for dessert.  But then, I thought about it again. And as I neared close to a Safeway, I veered into the parking lot, ran out into the cold, ran into the store and got me some ice cream!  I was ecstatic.  As soon as I arrived home, I went into the bedroom and dropped the ice cream on the desk. 

Jewel:  Ben, guess what I brought home, to celebrate?

Ben:  What?  

Jewel:  Ice Creeeeaaam!  

Ben:  Yay, babe!   What are we celebrating?

Jewel:  Well, I got my shot today, as you know. And one of the side effects was "you could die sooner."

Ben:  Oh?

Jewel: Yeah!  Can you believe that?!  So I thought...well, if I'm gonna "die sooner," might as well eat ice cream.  

And the rest of the night was pretty much perfect.  We made homemade pita pizzas, ate ice cream before AND afterward, watched an episode of NCIS, and went to bed facing each other,  both of us in the fetal position with our heads touching.  I know...weird.  I said a prayer, thanking God for my family and for just being awesome all around, and thanking him for ice cream.  Life is just too short to not eat ice cream.

World Kidney Day 2013!

It's the third week of  National Kidney Month.  Yay!  So throughout the month you'll see more posts on the science of kidney disease, treating kidney disease, and living with kidney disease.  And most importantly, what you can do to support yourself or anyone you know with chronic kidney problems.  Happy Kidney Month!

So I didn't wear anything orange today. Boo! I know.  But the only orange shirt I happen to have is from when I volunteered with NKF for KEEP back in February.  And it's an orange T-SHIRT.  Not exactly work appropriate.  But that doesn't mean I can't celebrate!  Today is World Kidney Day. Yay!  Go kidneys!  Here are some random facts, courtesy of the National Kidney Foundation:  

• 26 million Americans are affected by Kidney Disease
• A lot of these people are located in the South, where all the good homecookin' is...but also where a lot of obesity, high blood pressure, diabetes and kidney disease is
• 1336 people in Maryland, Virginia, D.C. and West Virginia are on dialysis
• Alabama, Mississippi, and Tennessee are home to about 1500 dialysis patients
• Our kidneys do more than filter blood; they help create it, as well as stabilize salt, potassium, and acid levels in the body.  
• Early detection is the key to surviving kidney disease.  Many people who have it, don't know they have it!  And the same goes for people who are at risk.
• There is no cure for kidney disease.
• Dialysis or transplantation are the only ways for patients with End Stage Renal Disease to survive.
• The average waiting time for a kidney transplant from a diseased donor is four to eight years. 
• Kidneys from living donors have the highest success rates!  Patients with end stage renal disease can live off a kidney from a living donor for as long as 20 years! 

When I was diagnosed with kidney disease, I didn't know what to expect. And neither did my parents.  But early detection saved my life!  I know many people I talk to hate going to the doctor, but I highly recommend having an annual physical if you have a history of kidney disease, diabetes, heart disease, high blood pressure or any chronic condition in your family.  

On World Kidney Day, spread awareness about this disease and the risk factors.  Check your blood pressure. Have your friend's blood pressure checked!  Take on a low-sodium, non-processed foods diet for a day.  And if you feel called to, look into becoming a donor for someone who needs it at http://www.kidney.org/transplantation/beadonor.cfm. 

Seriously, the gift of life is one of the greatest gifts you can give! AND...I think you get tax breaks if you do it.  I think I would totally donate my organs if I thought someone would want them.  But right now, I'm pretty sure if I donate my kidneys, the recipient would probably only be able to get a weekend...maybe a week's worth of function out of them.  Yeah so, if you're entire body hasn't gone to sh*t, donate something!
 
 

Wedding Wednesday: Invitation Fascination

94 Days 'Til the Wedding

Welcome to another episode of Wedding Wednesday!  I am halfway through HAND addressing the envelopes for the wedding invitations with no cramps yet!  When I mentioned that I was doing this, my mom asked why not just print out the addresses. Because I wanted to make them at least a little bit fancy.  Here's a little snippet of what 210 guests will receive in the mail within the next two weeks:

EEEEEEE!  Another big shoutout to our invitation designer, Tabibi Design.  These are just awesome!  Some things I do want to mention about our invitation saga, because it ends on Saturday with me at the post office, preparing to send our babies off into the world:  

• These babies weren't 100% perfect on arrival, but only due to a minor oversight by Ben and me.  We hadn't even considered needing to know the names or the number of people RSVPing, so we kinda, sorta neglected to add anything to the card advising people to write the names of people who are coming. We discussed writing a note on the RSVP card, adding a small typed "directions card" to the invitation suite.  But none of those ideas were good enough for us.  BUT, we did come up with something really good in the end!  We think that what we decided to add does not take away from the design of the suite, and also keeps guest from writing in names of people who are not invited or adding their own plus ones if they aren't entitled to one.  And with 200 people on the guest list, we had to relegate several "plus ones"  to the B List;
• Traditionally, invitation suites include several inserts.  For example, there may be an additional piece of paper with directions to the church or reception site, another one for making hotel reservations and travel plans, and (this goes goes against etiquette) another one for registry locations.  So the guest might receive an envelope with 5 different pieces of paper!  Well, Ben and I believe in conserving trees and paper...sort of.  But mostly we're just cheap and love technology.  Which is why we decided to go with a simple insert that tells guests to go to our web site for more details.  I wrestled with my mom about having something else in the suite for months, until this past Sunday.  My mom really wanted us to have an insert mentioning directions, hotels, and how to get onto the military base.  And I even crafted one on my computer.  But then when I printed out a sample, I really wasn't happy with it.  Our invitation suite is so wonderful and unique that I really didn't want to add anything to it that would take away from the overall look.  And ALL the details ARE on the website!  I'm convinced that my mom really just wanted to include an insert for the one old person who still doesn't know how to use a computer or how to enlist someone to help them use a computer.  I think in 2005 that would fly, but 2013? I'm sorry, but...no. The last wedding I went to, I found everything I needed on their website. 

More than anything, I really want guests to see our invitations and see a reflection of Ben and I.  They are NOT traditional, although they do have some traditional elements.  But my favorite thing about them is that they seem to convey a sense of fun and celebration! I had someone say to me that this isn't just a party, it's my wedding.  Yes, that is true, but we want our wedding to one big party to start the summer...to start our lives as a married couple and family after 8 years of dating...to congratulate ourselves on making it after dealing with my crazy health problems.  I'm sorry but once June 15 comes around, all I'm going to want to do is PARTY with our good friends and our family members.  Almost kind of a "We made it!" type of celebration.  

Stuff I did over the weekend:

• My mom and I visited the reception space and decided on a menu and the bar.  I haven't tried all of the options on the Officer's Club menu (Oops. But seriously...aint nobody got time for that!)  soooo I hope it's good! 
• I finally found some shoes to wear under my wedding dress. Yay!  Checked that off the list.  So I'm pretty much ready for my dress fitting.
• I went ahead and made an appointment to get my weave put in (Oh, yes) at the end of March.  Now, I just gotta order my hair. And it's my wedding day so I'm gettin the good hair.  Gonna werrrrrrrrk.   
• Ben and I caught up with Ben's parents on progress with the rehearsal dinner. It sounds like we are really close to having a tent of some sort, so that's pretty exciting! 

Mini Freakout of the Weekend:
Unfortunately, there were more freakouts over the week than I would like to have had, but I'll discuss one in particular.  Bridesmaids dresses.  Ugh.  Man oh man, I am so thankful that after this wedding I'll never have to pick out another bridesmaids dress for someone EVER.  NEVER AGAIN.  Anyhoo, three of them arrived.  I believe I mentioned that in a previous post.  Obviously, as soon as my sisters received theirs I had them send me pictures of them in the dresses. A) they still don't fit... and B) from the picture, they looked like they were the wrong color yellow.  How could this be you ask?  How could you order the wrong color yellow?  SWATCHES.  Damn swatches, that's how.  Panic set in.  I was going to have the cancel the wedding.  I prayed that the pictures my sisters sent me were just taken with one of those instagram filters or something!  There was only one way to know for sure:  I had to go to Woodbridge.  This was it, I thought, walking up the stairs to the guest bedroom where all the wedding stuff is stored for now.  This will determine whether we're having a wedding or NOT.  My sister pulled the dresses out of the closet and laid them on the bed.  And to my surprise...they were perfect!!!  The dresses are the color that I was hoping to get.  Turns out, there is a shimmer to the dress, so the color appears slightly different in shady, or weirdly lit areas.  I'm not thrilled about this fact, but I've decided not to reorder.  And Ben has assured me that this phenomenon of "different lighting/different colors" is quite common. 

I haven't made my wedding planning schedule for the weekend yet. But hopefully it FINALLY includes a visit to Kayak.com to get those honeymoon tickets... :) 
 

Know Your History, Know Yourself

It's the second week of  National Kidney Month.  Yay!  So throughout the month you'll see more posts on the science of kidney disease, treating kidney disease, and living with kidney disease.  And most importantly, what you can do to support yourself or anyone you know with chronic kidney problems.  Happy Kidney Month!

Last month, Saturday, Feb. 9, I woke up at about 7 A.M.  I was feeling a bit nervous.  I didn't know what to expect.  I ate a big breakfast and put on comfortable but decent clothes, wondering about what every one else would be wearing that day.  I wondered if anyone would talk to me, or if everyone would separate into their own, "We know each other and we know what we're doing" cliques.  I was a little sad because I was taking part in this new experience for the first time without Ben.  Not that I can't do things on my own, but it would have been nice to know SOMEONE I remember thinking. But I had to remind myself: this wasn't about knowing people or having someone to talk to.  It was about helping people, and learning how I can spread awareness about kidney disease.  And, fortunately, I was able to (I think) succeed, in helping one person, spreading a little bit of awareness, and I even met and talked to some incredible people!  This, ladies and gentlemen, was my first experience at KEEP.

For the past few years, I've been wanting to volunteer with the National Kidney Foundation.  It took embarking on a new goal-setting adventure with my friend Abe for me to finally get it together.   After procrastinating for too long, I last minute committed to participating in a Kidney Early Evaluation Program (KEEP) event. KEEP is one of NKF's biggest, monthly volunteer events.  For about four to five hours, volunteers welcome members of the public into a location like a school, church, or convention center, and test them for free to see if they are at risk for or have kidney disease.  Isn't that cool?!  NKF draws in volunteer nurses, doctors, dieticians, and people who can't do anything really, like me, to help run these programs.  I was with a group of women that ran the registration desks.  Part of my job was to make sure each person that registered for KEEP was eligible for the free test.  To get the free test the patient had to meet one or more of these criteria:

• the patient has high blood pressure
• the patient has diabetes 
• the patient's mother, father, brother, or sister, has one of the above and/or kidney disease

A positive answer to any of those risk factors entitled the patient to a FREE blood pressure check, blood draw, and urine check, and a meeting with one of the doctors and dieticians.  Of course, some people didn't know if they had either of those risk factors, which meant they could only get their blood pressure checked for free.  And believe it or not, a good chunk of people found out THAT DAY that they had high blood pressure.  Remember, what I told you about HBP being the "silent killer."  Lucky for them, they were able to get it checked for free then continue on throughout the rest of the KEEP program to see if there were any other warning signs.  Early prevention is the best way to go!  I've heard several stories of people not finding out they had kidney disease until both the kidneys failed!  

Besides volunteering, another thing that I have been longing for ever since getting diagnosed, and ever since finding out that I need a transplant, was a connection.  In my bubble of personal relationships, there's not really anyone who's had to go through something like what I have.  Recently, my aunt had a biopsy on her brain, and the tumor turned out to be noncancerous (Yes!).  I talked to her about her surgery, which was comforting because she was another person who'd had major surgery.  But really, nobody else...gets it.  No one else is sick :-/  And no one else has ever been the process of recovering from being sick. And I mean really sick.  Like this kinda sick.  Like "you need another person's organ to stay alive" sick!  Well, secretly, before going to KEEP, I hoped that I would meet people I could talk to about this.  And it turns out, that volunteering with KEEP at NKF is the best place for this.  I met a woman who donated a kidney to her coworker a few years ago.  She helped us check in folks at the registration desk.  Another girl on my registration team, looked like she was a bit older than me, and on her second transplant, and she'd gone through dialysis before.  And my registration desk partner...well she was just there because she loves volunteering with NKF!  

It's weird but, I sort of felt like I belonged to a little club now.  I love love love getting those encouraging words from my friends and family members.  It really helps a sick gal like me.  But somehow talking to people who have already gone through the process turned the light switch on, and it allowed me to see that people, real people, people who really have no clue who I am except that my kidneys are failing...people who also only have one kidney, are making it through this, and they know I can make it to because they made it already.

Anyways, the moral of this blog post, volunteer somewhere!  It doesn't have to be with NKF.  If it is, awesome!  That's a great way to commemorate National Kidney Month.  If it's not with NKF, awesome! It's still a great way to give back and help someone, the way so many others have helped a sick gal me.