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.

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." 

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?   

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 invitations...as 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 her.  The 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. 

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.