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.