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.  

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. 

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.

 

"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.  

 

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.