Wedding Wednesday: High Gear & Death to RSVP Cards

52 Days Til the Wedding

Today is a much needed day off work! YES!  I have a visit with the surgeon who's going to perform my kidney transplant (in 9 days, I might add).  I'm looking forward to getting some information on the procedure, as well as what I can do to prepare, how things are going to go afterward, and when I can start traveling!  And since I'm taking the entire day off, I'm going to use some of the time to get a little wedding planning done without the pressure of having just left the office.    Anyways, below is the planning breakdown. Weird to think that the next wedding planning post I do will be 45 days before the wedding.
 

What We Did Over the Past Few Days:

• So on Saturday, Ben and I agreed: No more messin around! And we decided to get serious about one thing that has been getting on our nerves for the past five two months.  We finally ordered our wedding bands!  Actually, I have mine in the apartment because they had it in stock.  Ben's should be here at the beginning of May.  They are sort of matching bands, hehehe!  I don't know but I kind of like that idea. My friend got married last summer and she and her husband had matching gold bands and I thought that was just the most romantic and cutest thing.  
• In semi-unexpected turn of events, Ben reordered a completely different suit.  At this point in time, usually the bridal party has all of their attire.  They may not have it in possession, but it's ordered, perhaps fitted and almost ready to go.  Well, Ben had to reorder his because it wasn't the right side. We thought about just letting it slide but then we decided, no.  He's the groom. This is OUR wedding.  We're paying a lot of money for this event, and for the photos of the event. I know nothing can be perfect but we're going to try to get him as close to that as possible. Reordering of the suit, which happened to actually be more expensive, turned out not to be that much of a cost difference. So we think it was a good choice.
• We took our engagement pictures!! And I'm soooooo happy we finally did. I CAN NOT WAIT to see what they look like. And surprise bonus: Ben actually had fun doing it.  Crazy, right?  Yeah. In fact, I think he had so much fun doing it that I could probably convince him to do it again!

What Sort of Makes Me a Little Bit Mad.  Mad enough to complain about it on my blog, but not mad enough to say anything else about it again:
RSVP Cards are a COMPLETE waste of time and money.  You've heard me talk a lot on this blog about how enamored Ben and I were with our RSVP cards, designed by our wonderful invitation designer. Well, turns out other people love them too because I'd say of the 80-90 invites/RSVP cards that we sent out, we've probably only received back about 40.  Everyone else, we've had to call or email them about whether they're coming to the wedding or not.  We included those cards specifically in the invitation suite, with stamps so that we wouldn't have to do that.  Well, ladies and gentlemen, this situation has led me to the conclusion: the age of the RSVP is DEAD.  If family members can't even send in postage paid card to say yes/no to the invite, then I've lost faith in everyone.  If you, dear reader, decide to plan a wedding, ignore every piece of etiquette on RSVP cards.  If I ever have another wedding, or maybe a vow renewal, best believe I'm doing online invitations.  People just don't care that much anymore sadly. 

What's Next:

• Let's purchase a veil, shall we? OK then.  Doing that this weekend, especially since my second dress fitting is April 29!!!
• Ben and I have been talking about our marriage license. We might have one of those come Monday since in Virginia you can get it up to 60 days before your wedding.
• Pay considerable attention to my DIY projects.
• We're meeting with our officiant/my cousin this Saturday.  My parents are throwing a BBQ which will be an added bonus.
• This might be reaching but...re-schedule honeymoon?? Let's hope so! We're aiming for September.

When A Door Closes, A Dad Knocks It Down

11 Days 'Til Transplant

And the countdown has started. Crrraaazzzy.  Also, it's kind of weird that I started the countdown for days-til-the-wedding on this blog at 100 days, and this countdown starts at 11 days.  Just sayin.  

It didn't dawn on me until a few days ago that I'd probably left quite a few details out about what exactly happened with my sister, Jocelyn.  If you've been reading this blog since January, you'd know that originally, for the past 10 years, we've all been telling my younger sister Jocelyn (20 years old) that she was going to give me a kidney someday.  It just made sense to us. She's my sister; she's young and she's healthy. And she's one of my best friends so this would have made for a pretty great movie I think.  Oh...actually that movie already came out. And we weren't in it.  Anyways, Jocelyn was like "Neo." The one.  The one who would fix everything.  And I always thought, "Wow, God, Thank you.  I knew there was a reason you gave me a sister who steals all my clothes. It was so that I could have her kidney.  Thank you." But no, not really, at least not yet. 

Jocelyn was 90 percent done with her evaluation to be my donor.  She was all set to meet the surgeon and she passed all the physical tests.  In her meeting with her nephrologist, they made a discovery related to a little test I did 10 years ago at the National Institute of Health.  When I was first diagnosed with FSGS, my pediatric nephrologist recommended to my parents that we seek out a second opinion on treatment options, just in case there was anything besides thousand-milligram steroid treatments that we wanted to try. Before I started that treatment we took a visit to NIH to participate in some research studies on FSGS to see what was out there as far as treatments.

Last year, I went back to NIH, to get a second opinion on treating kidney disease, since my stage of renal failure had progressed to stage 4.  During that meeting with the same researchers, they revealed that from the blood I gave 10 years ago, they discovered I was a carrier of a special gene.  Their research has shown that people with that "special gene" are at a much higher risk of developing kidney disease. All of this research is being done  so that a cure can eventually be found.  

Fast forward to about two months ago, at my sister's meeting with her nephrologist.  He told her that he discovered my participation in the research at NIH, and the results (me having the gene) . He was worried because we're sisters. Basically, there's a 50/50 chance Jocelyn could have that gene as well, and that if she donated, she could develop FSGS too.  Because of that, Jocelyn's nephrologist would not give her the approval to donate, until she's had her own gene testing done as well.  

Of course, we were all DEVASTATED, for a number of reasons.  We didn't want to hear that Jocelyn had the gene, or was at risk for FSGS.  And also, this meant that I would have to start making preparations for dialysis.  A whole month and a half wasted.  A month and a half of kidney function that I would never get back.  That I haven't gotten back.

So, what did this mean?  What's happened since then? The doctors suggested that my dad try out to be my donor.  To us this was not really THAT ideal because he's older.  He's not as "fit" I guess you can say as he was in his 20s, like Jocelyn is.  And also, because of those two things, who knew what kinds of things were wrong with him. This is what we thought.  We were all wrong.

My dad is SO HEALTHY.  Healthier than me, actually!  And his age isn't going to be a problem.  My dad stepped up to plate, passed all the physical tests with flying colors, changed his diet to low sodium (like me) and was approved to be my living donor last Wednesday, April 17.  On his birthday.  

I can't imagine what that feeling must be like for a parent.  I was telling a friend of mine on Skype the other day that I just realized that people die if their kidneys don't work.  My dad is SAVING MY LIFE, really.  .  And I'm not sure if he ever expected to have to do this with one of his children.  

So hey Dad, I know you only read this some of the time but I love you. And I'm blessed/lucky/fortunate to have you as a dad, and I definitely do not deserve a dad like you. Especially all those times that I was...a pretty bad kid.  But I'm so thankful for God's grace, and that He saw fit to give me a great father like you.  

Ben also says, he thinks "it's swell," what you're doing.  You know how he talks.  He says "swell."   

Developments

Thankful. Speechless.

Surprised?  Me too.

The countdown to transplant starts now.

In the meantime, have a good weekend.

I know I will.  :)

 

Wedding Wednesday: The Art of Not Getting Things Done

59 Days 'Til the Wedding

OK so you know how sometimes you have the best intentions of waking up early and doing everything on time and according to the plan you have laid out for the day?  And then you know how sometimes even with the best intentions you end up waking up about two hours later than you wanted to, leaving an hour later than you wanted to, making a last-minute added stop at a restaurant for lunch (even though you had a huge breakfast just hours before), and then end up not really getting all that much done because of circumstances beyond your control?  Well, that's pretty much how my year of planning this wedding has been.  

This past Saturday Ben and I had a schedule, a plan. We were going to wake up early, eat breakfast, go wedding band shopping, pick up his tailored suit and other accessories for Ben's wedding day outfit, and go grocery shopping for the week.  

Well, we managed to accomplish two of those things.  Wedding band shopping was a bust for the second time this year.  We showed up prepared to buy!  We even worked on our negotiation strategy.  The place where we were going to get our rings isn't like a chain jewelry store that's open the same time as mall hours.  And for once I wished it was, because as it turned out they were closed on Sunday.  We walked right up to the doors, just to turn around and walk back to the cars.  So the wedding is in less than two months and we don't have our wedding bands.  

While we're on the topic of things that didn't get done for the wedding this weekend, let's talk about things we don't have/haven't done yet for the wedding in general, shall we? OK!

• Rehearsal Dinner Stuff:  We handed over the responsibility of securing a tent for the dinner to Ben's dad, thankfully.  Meanwhile, Ben and I were planning to research tables, chairs, and decorations.  I've done the research, but no money has been spent.  
• A Veil:  Prreeeetty sure I said I was going to do that this weekend. 
• Stuff to Keep the Kids Busy:  We're having kids at our wedding.  Kids?! I know. And guess what-- I don't care!  I actually like kids.  We're planning to have special items at the seats for kids.  Again, no money has been spent on these items yet.
• Sheet Music for the Communion Song:  Waaaaaay overdue, but apparently Citipointe is not in the business of making sheet music for piano players.  So we're having to improvise.
• A Marriage License:  In Virginia you can get these 60 days in advance.  So we'll be getting ours before the end of the month.  
• A Guest Book:  I keep trying to think of something that's NOT boring.  But I haven't had much time for that these days.  

 What I'm Proud of Myself for Doing:  writing a bunch of timelines for the wedding day and wedding weekend and sending them to people!  It was only then that I realized...man...I've been looking forward to this day for the past year and it's going to go by extremely fast.  Sigh.  

Next Up on Our Radar:   Ben and I did spend the weekend SHOPPIN!  I never buy clothes because I'm trying to save money for vacations and weddings.  So of course, we had to hit up the mall for outfits to wear for our ENGAGEMENT PICTURES. We're scheduled to have our photo shoot (wow, I feel so fancy) this Friday.  It's also scheduled to RAIN this Friday according to the weather. I'm praying that it doesn't rain so that we don't have to go through the trouble of rescheduling.  Blah.  Either way, I'm realllly excited to have some awesome, professional pictures of Ben and I.  Nearly 8 years of dating, and finally, pictures that will actually look great!!

Also Next:  Hopefully we'll be rescheduling our honeymoon!  I talked to our honeymoon planner.  Seriously...a God-send.  He is the greatest person and so understanding.  And he's agreed to work with us when we hear about what's happening with the transplant situation.  And we're really hoping to find out something soon.  Things are getting down to the wire!!  Postponing the honeymoon was not what we wanted, but I'm just happy that we can still go!  And right now we're trying to think of good, reasonably priced mini-moon excursions.  For us, a minimoon has to A) utilize the least amount of annual leave days possible, because we are still planning to take our big-moon this year; B) be on the East Coast, so that if we have to fly it's not as expensive as, say, flying to California. It would also be a shorter flight; C) include some kind of atmosphere where we can go to fancy dinners and also get massages and do spa treatments.  We really want to use our mini-moon time after the wedding to decompress from everything, and relax.  But we don't want to go so crazy that we end up not being able to do what we really want to do:  which is swimming in an eternity pool and drinking wine in Santorini.  It's one of those things where we have to look at the big picture and our long term goal. 

And we're open to suggestions for any mini-moon ideas.  So if you're reading this, and already have a little mini-moon planned (because I honestly don't) holla atcha' girl :)

10 Things, One Tube

It's April 15 and I've officially had a plastic tube coming out of my stomach for a week and five days.  And a happy Monday to you, too!

Prior to the PD catheter placement surgery, I didn't know what to expect, as far as how I would feel after the surgery.  Everything happened so fast, it seemed.  I did a little research online, including my favorite type--video research on YouTube--but other than that it was hard to know how I would feel after the surgery and what the rest of my life would be like with this tube in my stomach.  And by "rest of my life" I kind of mean, next few weeks, months if things just end up not unfolding like I hope they will.  

My catheter is just about healed all the way up, and next Monday I start dialysis training for half a day, for a whole week.   A lot of people have asked me how I feel about this tube, what it looks like, do I feel like an alien, do I feel like an iPod (I think that's just my sister Danyelle though).  So here we go, 10 things I've learned in the past 12 days with a catheter in (with pictures at the end for people who want to get to know me a lil better ):

1.  Your abdominal muscles control everything.  And I mean everything.  Well, maybe not everything, but most things.  I hope that there will only be one other time in my life where I'm begging, pleading, and crying with my fiance to not make me laugh because last week, laughter became synonymous with literal gut wrenching pain.  And so did sneezing, walking, getting out of bed and going to the bathroom...both numbers.  

2.  Stomach surgery will cause night terrors.  The first night after my surgery, the pain medication and the numbing agents had worn completely off and I found myself at war with my mattress, trying  to get in a comfortable sleeping position. I should have known:  comfort and stomach surgery do not go together. I feel so bad for Ben because that first night I moaned and groaned and screamed "THEY CUT ME?! THEY CUT ME?! WHYYYYYY?!"  Why, indeed.

3.  Exercising is bad, at least right after the surgery.  Because my abdominal muscles were pretty much shot and the catheter in my stomach was all new and still sort of bleeding, anytime I wanted to sit up from the lying-down position in my bed, Ben had to help me and slide a bunch of pillows behind my back.

4.  Bacteria is bad too.  Two days after the surgery I visited Devi, my PD nurse, with my sister Danyelle. During that visit she removed the first bandage I was given, cleaned around the catheter exit sight and rebandaged it.  During this process, Devi removed each portion of the new bandage, the iodine and even her latex gloves from each package and emptied them onto a sterile surface. She emphasized the importance of handwashing when cleaning the exit sight and using sterile tools.  The catheter is a tube that has a closed end.  When that end is opened for too long, it provides a direct access line for bacteria to the inside of my stomach.  So taking all the necessary safety precautions when cleaning the exit sight is pretty important.

5. Filling my stomach with even a cup of dialysis solution feels weird.  During that first visit with Devi, she flushed my catheter.  That involves opening the tube (in a safe and sterile way), connecting it to the PD dialysis solution bag, and letting about a cup of fluid into my peritoneal lining, then draining it right after. And we repeated that for about 4/5 times.  She did this to make sure the catheter wasn't filled with blood or clotted.  When the liquid entered my stomach, I felt a little bit of cramping in my pelvic area.  I don't know if this feeling will go away with time.  I have to remember that my catheter is still new and is not all the way healed.

6.  Ben and I look funny in those SARS masks.  When cleaning the exit sight and doing dialysis, every person around the catheter has to wear a mask covering their nose and mouth, to prevent the spread of bacteria.  Ben and I gave ours a try when we had to change  my bandage together for the second time.  

7.  A shower is out of the question.  Since my catheter is still healing and covered in a bandage, I can't get that portion of my stomach wet.  So for the past 12 days, I've been bathing in about 5 inches of hot water in our bathtub.  

8.  Number 2 becomes number 0.  So this might be TMI but it's my blog so HA!  And this could be valuable information for anyone about to have surgery.  Basically, before you're put under for a surgical procedure they make you drink this highly concentrated ExLax to empty out your bowels.  Advice:  drink this when you're at home for at least a good six hours.  When the procedure actually happens, because of the anesthesia your intestines pretty much go to sleep.  They take a long coffee break and stop working.  After surgery, it takes a little while for the intestines to wake up.  And the doctors will tell you, before they wake up, take precautions!  Eat tons of high fiber foods and keep some "supplements" on hand especially if you've had stomach surgery. Or else the same way laughing and sneezing cause pain, going to the bathroom will also bring you the same amount of pain.  Real talk.

9.  I can still be cute with catheter.  I was worried about how I would look with this tube in my stomach, both in and out of my clothing. Hey, I'm human.  But surprisingly I haven't had any problems. And my stomach, which was significantly bloated after my surgery, went down to its normal size. 

10.  It's easy to forget.  Now that a lot of the pain has subsided, I'm starting to forget that it's even there.    Even when I lift up my shirt to get a glimpse at it, I think "oh that's not so bad." And I'm sleeping a lot better nowadays, able to sleep in my normal positions too.  Some days I think, I might actually be able to do this whole dialysis thing.

And NOW for the good stuff.  Zee photos.  The following pictures are rated PG and feature some brown skin and cords emerging from someone's stomach.  

Jewel, by day.

Jewel, the alien.

With this catheter, I can now drink all my sodas again...along with a lot of toxins and acid.