Friday, March 29, 2013

I love a good diet challenge.

A few weeks ago, I mentioned that I follow a low-sodium, no processed foods diet.  And I love it! It was rough when I first started (back in high school) but 10 years later I'm pretty happy with it.  The low-sodium portion is something that many people with chronic kidney disease follow.  High blood pressure, a symptom and cause of kidney disease, is linked to high-salt foods.  And let me tell you, it's not hard to have a high-salt lifestyle nowadays. I went out to eat last week at a Mexican restaurant and checked the restaurant's menu online for nutritional values.  To put things into perspective, we're supposed to have 2,300-2,400 milligrams of sodium per DAY.  A single entree at this Mexican restaurant usually EXCEEDED that value.  Yeah...and people wonder why I cook 90% of my meals at home.  If you're up for the challenge, here are the basics of a low-sodium life:

  • Check nutrition labels.   Fortunately, in 2013, you can find nutritional values for just EVERY food you eat nowadays.  Read the labels to see how much sodium is in a particular food. For fresh produce there are are no labels of course.  That's because the amount of sodium in raw, uncooked, uncanned vegetables and meat is negligible.  It's when you veer into the canned/packaged food zone that things get dangerous.  
  • Set a limit.  If the daily recommended value of sodium per say is 2,300 milligrams, that means you need to try dividing up your sodium values per meal and snack.  I usually give myself lower sodium limits (200-300 milligrams) for breakfast and lunch, because I enjoy making big fancy dinners (500-600 milligrams.  Some of my favorite snacks (nuts, yogurt, fresh fruit) run less than 100 milligrams each. 
  • Make fresh mashed potatoes, not boxed.  And that goes for everything else too.  Spaghetti sauce, rice meals, frozen dinners are all LOADED with sodium.  Make your own sauce and you can reduce that amount by HALF.  Which leads me to my next tip...
  • Put down the salt shaker.  Now, I'm nowhere near as strict as I was in high school.  I use coarse sea salt in teeny tiny amounts when I cook.  But some low-sodium enthusiasts recommend not using ANY SALT, AT ALL.  It is possible!  And the good thing: your taste buds over time learn to adapt to the way food is really supposed to taste. And guess what--it's actually good without all that salt.  What should you try instead?  Never use salt substitute for one.  And second, get acquainted with your spices and herbs.  I love garlic, onion, and hot peppers.  I overload on other spices so that I don't feel tempted to pile on the salt.  And keep in mind, that a lot of foods already have some small amounts of sodium in them. I made homemade mac and cheese the other night.  Three cheeses and the milk are already pretty well salted.   
So that's a low-sodium diet. But that's not the new diet challenge.  I went to the doctor on Tuesday and they told me that my potassium running high.  Potassium helps regulate your heartbeat and protect your muscles, and the kidneys, when they're working right (which mine aren't) make sure you don't have too much of it.  Diets high in potassium tend to the be the healthiest of diets.  Which is why I was not surprised to find that all the foods considered high in potassium are some of my favorite foods.  Just a few:  orange juice, pomegranate, black beans, broccoli, spinach, tomatoes, milk, yogurt, nuts and seeds. 

Because my potassium is so high, my doctors have recommended that I go on a low potassium diet. Foods that are low in potassium include: blackberries, pineapple, strawberries, peas, fresh mushrooms, pasta, and my favorite...Coffee and Tea! 

Maintaining low sodium and low potassium is going to be a bit more difficult than I imagined. It's been a few days and the same way that I got acquainted with all the sodium levels in many of my favorite foods, I'm starting to learn how much potassium is in much of what we eat.  Just a few examples:

  • Special K Red Berries, one of my fave cereals, has 60 milligrams of potassium, and 260 milligrams of sodium;
  • Kettle Chips, regular, which actually don't carry much sodium (only 120 mil), have 500 milligrams of potassium;
  • Bottled orange juice, has 560 milligrams of potassium and about 50 milligrams of sodium
  • Milk, 360 milligrams of potassium and can run up to about 150 milligrams of sodium per cup.
So you see how complicated things can get!  It's a bit depressing to think that I'll have to limit my spinach, tomato and yogurt consumption, all things that I love dearly. But on the other hand, maybe I can up my yellow cake, pasta, and coffee consumption??? Maybe?  I just have to get really creative. So last night I was craving ice cream.  Again, we had none because we tore through that one tub I ice cream I bought a few weeks ago within like 2 days.  And that's why I don't keep ice cream in the apartment.  Ice cream has dairy and, most of the time, chocolate in it--two things considered high in potassium. So going crazy on another tub is probably not the best idea.  So I decided to make a chocolate icy (I think that's how you spell it).  Someone just got Ben and I an awesome hand blender off our wedding registry, so this was a great way to break it in.  I combined ice, three table spoons of hot chocolate mix, and 1/4 cup of milk.  Blend and boom...chocolate icy.  Low in potassium, low in sodium.  High in sugary satisfaction :)  Let's hope I can keep this up for the next month or so.  

Thursday, March 28, 2013

The moment when your realize you need a miracle.

I'm scheduled to have my peritoneal catheter placement surgery on Wednesday, April 3. 

I guess I just feel sad; not even really scared anymore.  The shock and fear is starting to wear off. Reasons why I'm sad:
  • I have to have surgery;
  • I have to pay money;
  • I have to have a tube coming out of my stomach (attractive);
  • I have to make all these extra doctor's appointments;
  • I have to postpone the honeymoon.
I know I shouldn't say it, but my life SUUUUUUUUUCCCCKKKKSS right now.  And honestly, thinking about how "things could be worse" only adds to the depression.  So I won't be doing any of that.  

Today, I'm making a concerted effort to remind myself of all the things for which I should be thankful.  

I'm also trying to think of ways that I can stay positive.  Because as you know, *just smiling* is not staying positive. It's smiling and pretending everything is OK.

I'm also trying to figure out what this scripture is saying to me:  

Matthew 17:14-20

"At the bottom of the mountain, they were met by a crowd of waiting people.  As they approached, a man came out of the crowd and fell to his knees begging,  'Master, have mercy on my son.  He goes out of his mind and suffers terribly.  Falling into seizures. Frequently he is pitched into the fire, other times into the river.  I brought him to your disciples, but they could do nothing for him.'" 

"Jesus said, 'What a generation!  No sense of God!  No focus to your lives! How many times do I have to go over these things?  How much longer do I have to put up with this? Bring the boy here.' He ordered the afflicting demon out--and it was out, gone.  From that moment on the boy was well."

"When the disciples had Jesus off to themselves, they asked 'Why couldn't we throw it out?'"

"'Because you're not taking God seriously,' said Jesus.  'The simple truth is that if you had a mere kernel of faith, a poppy seed, say, you could tell this mountain, 'Move!' and it would move. There is nothing you wouldn't be able to tackle.'"  

I'm also thinking about how it would really take a miracle to stop the catheter placement.  

And I'm realizing that I am helpless [Unable to defend oneself or to act without help] at this point.  

I'm also trying to decide if I'm also hopeless [ Having no hope; despairing.] 

I know this post was filled with random thoughts and things, but "sometimes it be's like that." 

Oh and one more thought: right now I kind of wish this had never happened to me.  

OK, one last thought: I can't change the fact that this has happened to me. It's happening.  This train of "sucky health/life" is going full speed ahead and I'm strapped to one of the passenger seats and can't get off even if I wanted to.  But I'm really hoping that when this train stops, I'm in someplace awesome, and that it was all worth it in the end. 

Wednesday, March 27, 2013

Wedding Wednesday: Shift in Focus

80 Days 'Til the Wedding

All but four invitations have been mailed out.  22 people have said they are coming. Four people have said they are not.  And...I stepped into my wedding dress, for REAL, meaning I stayed in it for at least an hour, for the first time since I purchased it!!  YAY.  I had my fitting on March 25, to get the dressed hemmed and have some bra cups sewn into it.  Yes, I'm going semi-braless...

Anyhoo, it was another bland, blah, boring week of non-wedding planning.  That's not to say that the week or weekend was boring, but in the context of gathering material for my weekly Wedding Wednesday post it was.  I got caught up on my seven overdue tasks. Yippee!  Managed to take care of those things within an hour on Sunday.  And today I think I might actually take care of ordering some of the things I need for some Wedding DIYs.  Shouldn't be too complicated right?  Just click order and deliver! Simple.  

Yesterday, I meant to wedding plan for at least an hour. But all I did was go to the mailbox, collect two RSVP cards and update our guest list.  Then I tended to my eldest son, Bear.

Yep, that's me...or my Sim, Jewel, putting down Ben's and my screaming toddler Sim Bear for bed.  You can't tell in this picture but I'm actually pregnant here.  And last night my Sim gave birth to our second son, Hawk.  It's getting crowded in our household!  And in case you missed it...when Ben and I aren't wedding planning or doing anything productive we're playing with our Sim family on Sims 3.  In the game, Ben's a Top Gun and I'm mayor of the town.  However, I've been on maternity for almost three weeks in a row.  And that's a long time in the game.  My goal is to get promoted one more time, then have another child.  Just to give you a glimpse at how invested I am in the game, here's a snippet from the last conversation Ben and I had before falling asleep last night:

Me:  I might have to quit my job.
Ben:  Well, there is a such thing as a leave of absence.  Or an extended leave of absence.

Me:  You think so? How would that work? 
Ben:  Yeah, I think most companies have that.

Me:  Hmm, yeah because I don't know how I can stay mayor and also raise five children.
Ben:  *silence* what?

Me:  Yeah....It's getting to be a bit much. I'm talking about the game not real life!
Ben:  *silence*

Me:  Did you think I was talking about the real life?
Ben: Um...yeah...?

Me:  *laughs* Ben! No! I can't quit my real job! I need the health insurance! *laughs*
Ben:  Good night. 

I know the last two Wedding Wednesday posts have been about me just doing nothing. I'm sure it's starting to sound like I don't care. But it's actually the opposite. I'm VERY excited about the wedding--very,very VERY excited.  I'm so excited that I wish the wedding was this weekend!!  I'm sure I'll get back into the swing of wedding planning soon.  Probably next week. I think I have to next week anyways because it'll be April.

Monday, March 25, 2013

"But you're so young!"

It's the last week of  National Kidney Month.  Boo! I hope you enjoyed it as much as I did.  Can't leave without one last post.  Happy Kidney Month!

I've talked a little about my story and how I learned I had kidney disease in my "About Me."  But I thought it would be great to just reiterate a few things that I've said, and talk about what I've learned over the last 10 years, living with kidney disease and a chronic condition.  If this helps one person, then this post has done its job :)

You don't have to be old to get sick.  Most people know this but I get it all the time--the surprised reactions when I tell people I have kidney disease.  Kidney disease, or any disease, can strike at any time, when you least expect it.  I don't say this to scare anybody, but just because it's a fact.  I was diagnosed with FSGS  when I was 16 years old.  And at 26, people still remark "You look so young." That's because I am young!  I just also happen to have a chronic condition.  

You don't have to have an unhealthy lifestyle to get sick.  I've mentioned before that my mom cooked all our meals growing up.  We rarely ate fast food or ate at restaurants, and no one in my family is obese.  And as a teen I was pretty active. I did ballet for 10 years.  I say this because kidney disease is a condition that has many factors that can play into developing it.  Those factors are high blood pressure, obesity, and diabetes.   All of those conditions are linked to what most people perceive as "unhealthy lifestyles"-- eating too many fattening and high sodium foods and not exercising.  I believe that everything in moderation is fine; that taking a handful of vitamins every day will never be enough; that eating meat is still OK; that going organic is just a good practice in general, because who wants extra pesticides in their food; that making things from scratch is rewarding; and that exercising makes you feel good.  I believe all of these practices make you stronger and make you feel great, but they don't make you disease-proof. Some things are genetic.

You don't always feel sick when you are sick.  I've read stories of people finding out they have kidney disease at the last possible minute.  Basically, when their kidneys had failed.  That's because with many conditions, you may not actually feel sick until things get really bad.  I didn't start developing symptoms of kidney disease until winter of 2002.  And they would have gone unnoticed.  Teenagers aren't always as quick to point out that they're not feeling well.  I however, was feeling fine. Great actually!  But after a weekend band competition in Florida, I noticed there was swelling in my ankles, and it seemed like I'd even gained a little puffiness in my midsection.  Well, swelling and weight gain aren't that unusual, so my parents told me to just put my feet up or soak in the bath. No big deal. I went through three weeks of this, all the while feeling just fine.  Then I woke up one morning, face inflated like a balloon.  I still felt fine, but my parents agreed, that it might be time for a trip to the doctor.  It's the little things like this that tend to go unnoticed.  Fatigue can be excused by too many late nights.  Nausea can be explained undercooked meat perhaps.  This is unrelated, but my fiance's wrist has been hurting for at least five years now!  But the point is:  why don't we investigate these things?  Is it because ignorance is bliss, or are we scared to find out that something might be wrong?  The reason I've been able to keep my crap kidneys for the past 10 years, without dialysis until now, was because of early detection.  Annual doctor's visits, or more often if you know your medical history, are essential to stopping a disease in its tracks.  

Sickness doesn't have to define you. There's a lot of people who were surprised to hear that my kidneys were failing.  And these were people that I'd say are pretty close to me.  It's because the first thing I say when I meet people is not "Oh, I have kidney disease and I need a transplant."  And it's never been that way.  Sure it may come up in conversation, but before this blog, I don't think I even talked about it that much with other people besides my family.  And I'm proud of that.  I've never wanted the fact that I'm sick to hold me back from doing anything.  Hell, I don't even want to cancel my wedding OR honeymoon!  But just because I don't go around telling every single person I have kidney disease right away does not mean it doesn't affect me.  Because it is a chronic condition, more than half of the decisions I make in a day are influenced by my illness.  But what about the other half? I try to use the other half of my decisions to make life as great as possible for myself and someone else hopefully. 

When I was first diagnosed with kidney disease, I seriously thought my life was over. All that was in my line of sight was death. But two nights ago, I was saying my prayers. And I started praying to God as I usually do, thanking him for my apartment and my job...then I suddenly thanked him for "my swollen ankles." Then I started thanking him for all the things in my life that are...less than desirable I suppose you can say.  I know it sounds crazy but I started thanking him for all the symptoms of my disease! I don't know why, because I know that God does not wish suffering on me.  But what I've realized over the past 10 years that all of this, the course that my life has taken, it's for a reason. It's part of a bigger plan. And I can honestly say that because of that day 10 years ago, when I face puffed up like a balloon, I am a better person.  Nowadays, when I tell people I have to have a transplant and they say "Oh, I'm sorry," I almost want to say "I'm not."  I'm not sorry.  In fact, there's some days where I feel so blessed that I don't think I could feel more blessed even if I was healthy. And I think that's the biggest lesson I've learned out of all of this.  


Friday, March 22, 2013

The best thing about my dialysis appointment was Krispy Kreme

On Monday, March 18, Ben accompanied me after a long workday to my first home dialysis consultation.  The home dialysis nurse,Devi, was going to teach me all about what to expect, how I do it, where to do it, and how many times.  On the way to the appointment, I was pretty calm actually. Maybe even excited?

There weren't many cars in the parking lot.  Once I put the car in park, I started to feel the first quickening of my heartbeat.This was really my first time at a dialysis center.  As soon as we walked into the building, the scent of antibacterial spray and bodies flooded my nostrils.  It's hard to describe it any other way, but basically, it spelled like a hospital: suspiciously clean.  

In a little glass cubicle was Devi. She smiled at us and led us to her office and started the Q&A period.  She asked me about my GFR and what type of dialysis I'd like to do.  I'm looking at doing continuous ambulatory peritoneal dialysis.  CAPD is pretty easy to explain, surprisingly.  CAPD patients have a catheter (plastic tube) inserted into the lining around their abdomen. This procedure requires surgery.  The catheter stays there and about four times a day patients connect the tube to a bag of liquid.  Naturally, the liquid flows through the tube into an area below patient's stomach.  Think of your stomach having a long straw sticking out of it, and sucking on a huge capri son bag until it's dry.  That liquid stays in the stomach for a few hours.  Afterward, the patient connects another bag to the tube and that bag removes all the hours-old liquid from the area below the patient's stomach.  The liquid that comes out is usually yellow, the color of urine, because it's the waste that your kidneys are not removing.  

We watched two videos on ways to do this.  And each video followed a process: you are greeted by an very happy and enthusiastic, and nice looking person. Oh but they have a secret:  they have kidney disease...just like you!  What a surprise.  How do they manage to stay so happy?  Well you, as the viewer, don't have to worry about that.  The happy person explains that it wasn't too long ago that they too were receiving the call to do dialysis from their nephrologist.  This is usually done with a dramatized flash back to when the "happy person" was suffering with kidney disease and looked really run down and, frankly, scary.  The "happy person" then talks about nervous they were about starting dialysis but that their dialysis team helped them overcome their fears and now they're able to live a full life, raise a family, run a restaurant, and travel to conventions.  The End. 

It was a pretty convincing video, which is probably why they made it.  At many points throughout the movie I found myself thinking, "I can do this. I can do dialysis and have a great life."  Afterwards, reality set in, which is mostly just fear.  Devi asked if we had any question then she really laid it on:  I have to do dialysis, she said, if I want to live.  This is very true.  But she added that I will feel much much much better than I feel now.  Devi said, I'll feel like I'm cured if I do home dialysis, which she thinks is a good option for me. Hemodialysis, the kind I knew the most about, has many more complications and risks.  

I could feel warmth rush over my face and my eyes started to sting with the pain of trying to hold back tears.  As calm as I was going into the dialysis center, it wasn't until 3/4 through the visit that the reality of the situation fully set in.  I don't want to do dialysis. But I have to. I remember thinking I don't want to do this, life is not fair, and this is highly inconvenient.

"Do you want to see the hemo lab?"  Devi asked.  When we first entered the center. I could see behind a glass window separating the lobby and the lab.  I saw two people, an old man and a middle aged man, sitting in chairs, hooked up to machines. One was reading, one was napping.  It all looked so sad.  I wish I didn't have to say that, but that's the truth.   Those videos they make you watch, they have to be positive, so that you as the patient understand that you need these procedures to survive.  They want to encourage you. To make it look easier than it really is. In some aspects, it is easier. And there are worse things that could happen to a person.  But the fact is: being hooked up a to a machine for four hours a day, is not exciting.  It's not awesome.  It's not fun. It's sad. If it were any of the other things more people would be clamoring to do dialysis.  

When we left the center, it was pouring rain.  Ben drove while I sat in the back seat mulling over things.  He reached over the passenger seat and held my hand.  "Do you want to go to Krispy Kreme?" he asked, just as we were passing one of two locations within 30 min of our apartment.  I asked him if he wanted to go, since he had just passed the place.  Suddenly, we were making a U-Turn and pulling into the parking lot.  In less than a minute we found ourselves in front of this: 

Our excitement was palpable, just like the scent of the fresh donuts being pulled off the icing conveyor belt.  Like four-year-olds we fumbled about for 10 minutes trying to decide which 12 donuts to order. We needed to get equal parts glazed and filled, with one or two cake donuts thrown in. And of course we've got to have some of the warm originals. We finally placed our order and took our seats to devour the dozen donuts.  

Despite the depressing dialysis treatment lecture, this was one of the best days of my life.  I know, it's hard to believe.  Ben and I couldn't wipe the smiles off of our faces as we stuffed them with donuts.  I decided that instead of eating all six of the ones I picked out, I would eat one full one and then take bites out of all of the others.  As I moved from cinnamon apple to raspberry filled, I looked up at Ben, chipmunk cheeks filled with an Oreo Cake donut, and I wished I could stay in that moment forever.  I kind of forgot about what had transpired about a half hour before at the dialysis center.  The combination of sugar and Ben's presence was making me deliriously happy.  I thought, it's so nice to have someone to eat donuts with me.  It's so nice to have someone to go with me to my to doctor's appointments.  It's so nice to have someone who knows that after a depressing doctor's appointment, that naturally a trip to Krispy Kreme is what comes next.  

Ben and I don't know many other engaged people.  And the ones we do know don't have to deal with anything like this-- a test of your "in sickness or in health" vow before you've even have to vow it!  I would love to just have a normal engagement, you know, one where you just focus on planning your wedding, honeymoon, and maybe talking about buying a house.  But that's not our journey. However, I'm grateful for the one we're on.  Some people ask me if I'm scared  about getting married. But I am not. I am 100% ready.  I think what makes some people scared is the uncertainty of what's to come, how their partner will be.  Because of our special circumstances, I know 100% that I am taken care of, loved, appreciated, and protected.  I don't worry about if Ben is going to be there for me, because he already is.  

After seriously demolishing a half a box of donuts, we lingered for another 10 minutes to watch another fresh batch of donuts being made.  We even rooted for some of the underdog, deformed donuts to make it into the Krispy Kreme fundraising boxes, but they really do catch those quick!  I looked around the restaurant.  It was pretty empty except for a family with two kids, doing almost the exact same thing, marveling at donut creation.  This is what some families do---they take trips to Krispy Kreme, to have a special treat.  That day I was so happy to be there, watching donuts get fried, with Ben, one/half of my new two-person family.

Wednesday, March 20, 2013

Wedding Wednesday: Overdue and Over-danced

87 Days 'Til the Wedding

Just when I started feeling caught up with the wedding planning, I slack on doing one thing and now my Martha Stewart checklist says I have 7 overdue tasks.  One of them is not in my control, er, maybe 2 of them are not in my control. But still!  It annoys me to see those little exclamation marks next to the tasks in bright orange! 

The past week was spent addressing, labeling, stamping and mailing...36 wedding invitations.  That's just about half of the full amount I need to send off.  That's it.  

I guess you could say I also did something else for the wedding: I cleaned out and organized Ben's and my dresser and closet. One of the photographers will be at our apartment photographing the guys getting ready.  That scares me a little because our apartment...needs work.  We've been living in our current apartment for a year and a half and still haven't fully decorated it the way I want to.  And that's because decorating and organizing takes money.  A lot of it.  And for the past year, we've been trying to conserve a bunch of it, not for decorating purposes, but for wedding purposes.  But now that the photographer is going to be in our apartment, we've got to find ways to invest even a little bit into making our place look presentable.  I've started with the bedroom because ever since we moved in the bedroom has been a wreck.  It's never been a priority's the bedroom!  Nobody goes in there to hang out or eat. So we haven't invested too much time or money into getting that portion of the apartment straight.  But, the bedroom is also one of the rooms in the apartment that has a ton of access to natural light, which is great for photographs.  So basically, this wedding has motivated me to actually take steps to living in a grown up apartment with picture frames and plants and shelves in their proper places, and socks in drawers instead of in an orange tub on the floor.

What's Up Next:

Up next on our radar, nothing too crazy.  We've got to finish up sending out our invitations and figure out how we're going to alert people to the rehearsal dinner.  Then I'll actually start looking for stuff for my craft projects. And of course, I get to put on my wedding dress on Monday!  I'm going in for my first fitting on Monday.

So yep, sorry this is such a boring Wedding Wednesday post!  But the truth is, sometimes during wedding planning, you're going to be in a bit of a slump or slow period.  This isn't even really a slow period.  It's mostly just a period of finishing up tasks that were started a while ago.  I'll admit that last week I confessed to feeling pretty stressed out.  I called Ben from work and told him that I just needed an "anything" day. The kidney problems combined with wedding planning for an hour everyday (which was sometimes good, and sometimes time consuming) was really getting to be A LOT.  So this past Sunday, I stayed inside.  I didn't even make it to church actually.   I woke up kind of late.  Did some cleaning, which sometimes relaxes me.  Fell asleep on the couch for like an hour and a half.  Woke up.  Cleaned some more.  Ate McDonalds (hey, Sunday is a cheat day), watched some recorded television, talked to my sister. Then suddenly, after talking about songs we wanted to hear played at the wedding, I got the urge to learn a dance from YouTube.  This is the dance.  

I practiced for about two hours while Ben played video games.  The cat even gave me some pointers.  Here's a picture of him using his super powers to transform me into Janet Jackson.

"Dance, I say! DANCE!" 

No doubt that "slacker day" is what caused me to end up with SEVEN overdue tasks, but oh well.  Once the wedding day gets here, I'll have some new moves to serve up on the dance floor. 

Sunday, March 17, 2013

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 livesHer 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. 

Friday, March 15, 2013

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.

Thursday, March 14, 2013

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

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!

Wednesday, March 13, 2013

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, 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 start our lives as a married couple and family after 8 years of 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 to get those honeymoon tickets... :) 

Monday, March 11, 2013

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.

Sunday, March 10, 2013

The New Dealio

Last week, we got the news:  Jocelyn will not be donating her kidney to me at this time. So now I'm back at square one, without a donor, and without a new kidney.  And we were pretty sad about it, but I'm happy to say that I've officially...moved on!  Yep!  In fact, for the first time in months, I feel FREE.  I didn't know it, but waiting for a kidney transplant actually put me in the mindset of...waiting for a kidney transplant...if that makes any sense!  I kind of adopted the attitude of "when I get my kidney transplant...I'll do this" or "after I have my transplant, I'll do this!"  Well, sure that worked fine when I thought my transplant was going to be in like two weeks.

When I received the news about my sister, I thought, what am I going to do now.   How much longer do I have to wait?  Is it ever going to happen?  What about my plans?! MY PLAAANS!  Then it dawned on me.  Instead of waiting for my new post-transplant life to begin, I need to just move on with my current, "sick person life", and really...actually...this time, try to make the very best of it.  Once I realized this, it was like a door opened.  Two doors, actually, that's what I envisioned.  They opened and there was light!  A big bright light! And I walked through those doors and into that light and I flew. I was free!  Is it possible?  Is it possible to just do this "sick person life" forever? Maybe I don't even need a transplant!  And that's when I made yet another plan (of course) to...move on!   Here, I'll break down the plan.

First, I'm going to throw myself into wedding planning.  We're less than 100 days away now, and despite a few issues here and there, I'm actually CRAZY excited.  I think about the wedding every day now, and not with panic about appointments or projects, but with joy. I get a sugar rush every time I think about walking down the aisle to Ben. Eeeeee!  I all of a sudden feel more motivated to hand address those invitations that are supposed to be sent out on the 15th.  

Second, and this isn't set in stone, but I'm going to start dialysis as soon as possible.  This is my life now. My kidneys just can't take it anymore and I need to get acclimated with the process.  I've been doing a lot of research to find out what it's like to live life on dialysis.  This could be where "naive Jewel" takes over, but it doesn't sound like it's ALL bad.  Definitely highly inconvenient, and expensive but it's doable.  People do it for years before ever getting a transplant. And a positive (even though I thought we were done with that), I might even feel better!  And, I can still live a full life.  Which leads me to the final part of the plan.

Ben and I are still going to go to Greece.  I'm going to check with my doctor to see what he thinks about traveling.  And regardless of what he's saying, I'm going.  But something tells me he'll be OK with it.  They have dialysis centers all of the world and even in Santorini!  And I've read articles from people who have traveled with dialysis.  You just have to make preparations in advance.  And we all know how much I LOVE that.  :) 

I think I'm happier now than I was a year ago.  I almost don't even CARE about getting a new kidney.  HA!   I'm still hoping for a miracle, because Ben says I have to or else I should just kill myself.  But there's also a comfort in feeling that maybe God doesn't want me to have my new kidney right now, at this moment.  I know He doesn't want me to suffer; He wants me to prosper.  But maybe for me, the time is not right.  Maybe I'm not ready.  I don't know...but I have to believe that He wants the best for me.   I think I'm just supposed to be here in this place right now. 

Anyways, I found this great prayer on this devotional website.  I hope this helps someone today as it's helped me:

"Dear God, Thank you for being with me through my suffering. This present suffering does not compare to the future Glory that you have for us. Keep my eyes on the prize so that I can hold on to the hope that I have for a better tomorrow. Use me today to help somebody who might be suffering to encourage them that weeping may endure for the night but joy comes in the morning. I rejoice that you trust me with trouble because as a result I’m stronger, wiser, so much better. Without you God, I never would have made it. In Jesus Name, Amen"

Real talk.  Can't wait to be "stronger, wiser, and so much better." 

Friday, March 8, 2013

Real Life, Fantasy, and Optimism

You know the feeling of going through life thinking, "Gosh, I sure do have a great life"?  You think about how easy life is, how smooth it is.  I mean, sure you have some problems here and there--the job that you hate, but who doesn't hate their job right?  Not enough money saved up, but there's always going to be something else to buy.  Not sure what to make for dinner. Well, a million other people share that problem I'm sure.  You go through the little struggles of life but the point is, you get through them relatively easy, pretty well in fact.  So well that you begin to think, this is all going a little TOO well.  Even the bad stuff seems to be going a little TOO WELL.  You get kidney disease, it sucks but that's OK, you get to keep you kidneys for another 10 years.  Your kidneys decide to fail you.  Even that's not as bad as it could be.  You're O+ and so are a lot of other people in your family, including one of your best friends, your sister.  Awesome, right? How lucky you are! Most people take forever to find a donor but it sounds like you've already got one lined up. This is great!  You start a blog.  You write posts.  A lot of them are funny. You're really handling this well!  Then, your kidneys start to fail you even more, so your nephrologist helps your sister get an appointment to see if she's a match right away.  She even jumped over all the other people at the hospital.  Well, that's alright!  How blessed you are!  How amazing!  How...easy this process seems to be.  

You find out that what you thought would be a perfect match turns out to be the biggest let down.  And all of a sudden this easy process, easy life, it gets a little harder.  The other shoe has officially dropped.  

I've always been a pretty optimistic person.  I like finding silver linings and "thinking positive" most of the time. But I can see why not everyone would want to.  Letting yourself hope for the best has it's benefits, but it also leaves you unprepared to deal with the worst.  You're not ready for it.  There's no point in entertaining the worst with all that positive thinking.  Those types of thoughts can't fit. The positive side just bumps them out of your brain to the other side of the universe.

That's what happened to me. I thought about my sister...not being a match...not being able to donate.  No, no, no, no, no, don't think like that, I told myself. Stop that, other people told me.  You'll be fine. She'll be able to donate. You'll get your kidney. It'll be fine. Don't think like that.  More than ever, now, I really wish I'd let myself think about those things, because then this wouldn't be such a tough pill to swallow.  I've always been so scared of stuff, because of those positive thoughts.  I was scared of getting a transplant because I was so optimistic I wouldn't need one for another three years.  I was scared of dialysis because I was so optimistic I was getting a transplant soon.  I have just always wanted to accept something...that wasn't real.    

This is what's real:  as of today, I don't have a donor.  I am not getting my kidney right now.  I didn't get it in January.  I didn't get it in February.  It's March.  I doubt I'm getting it this month.  Soon April will be here.  Then May.  I don't know when I'm getting my new kidney.  I don't know who my donor is going to be.  And, yes, my kidneys are still failing.  These are neither positive nor negative thoughts.  This is the truth.  Thousands of people spend years on the waiting list for a kidney.  Years.  Because they just don't have anybody yet.  Nobody.  Why did I think I would be any different?   

Wednesday, March 6, 2013

Wedding Wednesday: 101 Days

We have...almost arrived!  At the wedding day, that is.  101 Days.  Dang.  369 days ago I was getting proposed to at the Potomac Waterfront.  Wow.  I was going to say time really flies but, I don't feel like it actually did. I think the past year of engagement has been fairly medium. Scratch that.  The "2012" portion of engagement went by really slow.  The 2013 portion, from January until now, has been on such turbo speed that it's ridiculous.  The next 100 days are kind of scary, in a way.   For one thing, our first full vendor payment, you know, everything after the initial deposit, is due 30 days from now. 

Yep.  I'm about to be just a little bit poorer.  C'est la vie.  The DJ "Do not play" and "Must Play" lists are due in 25 days!!  I'm having my first official fitting to get my wedding dressed hemmed in 14 days!  Oh em gee....

Three of the five bridemaids dresses are already HERE. Crazy!  And wedding in the awesome creations from Tabibi Design...are being sent out in 10 days!

I am excited, anxious, and nervous.  I really want the wedding day to go as planned, but I'm worried it won't.  Why? Because nothing I plan goes as planned! I guess I need to just get over it and accept my crappy DIY projects will in fact be...crappy DIY projects.  UGH.  OH well. 

What We Did Last Week:
-- We finally put pen to paper and started addressing our wedding invitations.  I have to say, this process isn't my favorite.  I really liked the final product after sending out our save-the-dates, but man, it is hard to write nice for ten envelopes in a row without screwing up because you know you only have a limited supply of the nice envelopes. 
--We continued to make inquiries into renting a tent for the rehearsal dinner.  Ben had a nice idea to just buy one of those big tents.  You know, the pole tents.  But who has $7,000 in extra money just lying around??  Not us! 
--We're trying to finalize what we need for our attire.  For me, it's shoes and undergarments for my dress, since I'm having my fitting in two weeks.  For Ben and the groomsmen, it's the ties, the shirts, and the pocket squares.  So many little details.  I always worry that I'm forgetting something. 

One thing on my radar that I'm really excited about, but can't really act on yet because I'm waiting for a certain new kidney: scheduling the session for Ben's and my engagement photo shoot!  It may seem kind of weird that we're doing our engagement session when we really only have a few more months of being engaged.  I know some people do it right after getting engaged but...oh well.  This is how we're doing it.  And today I'll share with you the wonderful photographer who is going to document that session and our wedding day!  Her name is Vicki and she's amazing!  I knew she would be a good fit because one of the things she said at our first meeting with her was "I don't know about you, but I'm not photogenic."  And to that I thought, you are preaching to the choir, girlfriend.  This might sound vain, but I promise you it's not.  Many people tell me that I have a nice looking face.   But man, am I un-photogenic.  Really! I cannot take a good picture to save my life!  I can take a good fourth picture, or a good fifth or sixth picture.  But not an automatically good first picture.  So all those people who told me that I could or should be a model, I hate to break it to you but I would get kicked off the first round of America's Next Top model. I just don't take good pictures. Outside of the camera, fine.  Inside of the camera?  My face gets screwed up somehow!  I'm being 100% serious here.  Every picture you see of me on Facebook, or this blog is usually accomplished after several takes.  So that's why when I searched for a photographer I knew I wanted a photographer who could make me look good, but also make it look natural, soft and romantic, and not too posey or commercial.  And that's exactly the type of photographer I found in Vicki.  And Ben and I definitely splurged on herThe way I see it:  after the wedding day, you're gonna have to stare at those pictures of your face and your husband's face and put them on walls for other people to stare at for the rest of your life, because everything from the wedding day will either be trashed, recycled, or stored away.  So you might as well look at incredibly awesome, and possibly expensive, pictures of yourself and your husband when you were young and hot and still making out in public, and wearing really nice clothes. 

Next up on our wedding to-dos:  Picking out the food.  And I cannot promise that it won't be typical blah wedding food. 

Monday, March 4, 2013

A Celebration

On Feb. 21 I got...the call...the call that said my kidney function is lower and I'm continuing down the stairs of doom that you blog readers have come to know as kidney failure.  There really is no turning back now.  I prepared to receive the worst at my next appointment--a dialysis diagnosis. I tried to get myself ready, mentally and emotionally.  I looked for silver linings (feeling better, just temporary, not dying).  I did a teeny bit of research on National Kidney Foundation.  I looked up dialysis centers.  I was beginning to see that maybe this isn't all bad.  You really can conquer anything once you change your outlook and your attitude.  Some people are way ahead of me in that department:

See what I mean about changing your outlook and your attitude?  Only Jocelyn would link dialysis and financial wealth together.  

After building up all these good vibes, I was feeling pretty good about my Feb. 26 appointment with the nephrologist.  God came through for me and gave me that peace that I was praying for. So I woke up the morning of the appointment ready to go, and feeling surprisingly good.  I almost vomited again after eating breakfast but that's the life of a kidney failure patient!  Luckily, Ben was there to help me calm down.  He suggested I lay in bed for a little bit before the appointment. I was so happy to have him going to the appointment with me this time.  Usually, I go by myself.  But I figured this late in the game, with me feeling this bad, and getting all kinds of sucky news, I might as well just bring him along.  He didn't miss a beat.  He got the time off work and drove with me.  Love him!

We arrived at the appointment a little late.  For some reason I wasn't crazy nervous (Thanks God!), until I remembered that during the few minutes I took to calm myself down from feeling nauseated, I forgot to take my blood pressure medicine.  Oops, not that it matters, I thought. It's been high for a while now. And it will probably be high until I get the transplant.  Another thing I forgot---deodorant.  

The nurse walked me to the back of the offices and took my blood pressure.  "120 over 80" she said.  

Ummm, ok.  I'll take that!  Waaaaay better than 150 over 100!  

Then it was time to see the doctor.  I see Dr. Howard and the rest of the team at Metro Nephrology.  And one thing I really like about my doctors there is that they seem really really smart.  I've had some bad doctors and I've had some great doctors, and let me tell you, having an intelligent doctor and a doctor who's NICE to you, really makes a difference.  I actually don't mind going to see my nephrologists.  

Dr. Howard informed me that yes, my kidney function did go down, but that [surprise] I actually don't need to go on dialysis unless I want to.  AMEN!!!!

Whew, I've avoided the dialysis diagnosis...for now. My doctor seems hopeful that I'll be able to hold out for just a little longer until we find out if Jocelyn is a donor match which we should know after March 7.  Just around the corner.  Come on little kidneys!  Just hang on!  Just hang on for a few more weeks then you can be rid of this life and go on to dead organ heaven.  You can do it! I believe in you.  

While at the doctor's office I also got two new prescriptions:  sodium bicarbonate (or baking soda) to help with the rising acid levels in my blood and possibly the nausea, and pretty soon I should be hearing about whether my insurance will pay for me to get a shot that gives me more blood or something?  Because basically, I have like no blood.  Well...not true.  I think I only have half the amount of blood in my system that you're supposed to have.  Which makes me feel crappy and cold.  So hopefully I can get a shot that gives me a little more blood/energy.  

After the appointment, Ben and I both rejoiced, because it wasn't bad news!  At this point in my life, hearing that I have to take extra medicine isn't really bad news to me.  I'm just thankful there's a solution.

The night before the appointment, I relaxed on Ben's lap while he played Plants vs. Zombies on his phone.  Romantic, right?  "What do you think of dialysis?" I asked, looking up at the underside of his iPhone.  "Do you think it's a bad thing or a good thing."  Without pausing to look down from his game to answer this thought provoking question, Ben simply said "I think that I'm...we're...very fortunate to live in a world where we have the technology like dialysis to keep us going and allow us to live comfortably."  

That's why I love Ben.  He always reminds me to be thankful for the little things. 

Change your attitude and outlook, and you really can conquer anything.