I have had kidney disease for 10 years now. The day before my 26th birthday (Feb. 13) will be the anniversary of that first biopsy that confirmed to the pathologist that I did in fact have focal segmental glumerulo sclerosis. If you've ever had a chronic illness, you'll know that after 10 years, some things just don't change.
You still ask why. You still wonder if it will be OK. You still wonder if it would be better if you just die. You wonder if anyone understands. You start to think people will never understand. You know most people close to you, don't understand.You know the proverbs and the quotes, and the sermons are true-- that the strongest steel has to pass through the hottest fire. You know that this will make you stronger, wiser, better in the long run. You wonder if you'll make it this time. You wonder if anyone cares. You believe no one cares. You force yourself to believe that you don't care if anyone cares. You pray. You get angry, with God and with yourself. You curse. You want to be surrounded by people. You want to be around no one. You want more friends. You want to be alone. You have to be alone. You are alone. You explain your disease to someone who asks. You lie, and say you're OK. You don't bother telling the truth anymore. You believe no one wants to hear the truth. You know no one wants to hear the truth. You laugh so hard sometimes you didn't think something could be so funny. You cry so hard, that you didn't know you could be so sad. You want someone to hug you. You want to just curl up in a ball and sleep forever. You want someone to understand. You want someone to be genuine. You want someone to call. You want real friends. You want none of those things. You want to disappear.
What I've learned about being sick: there is no way to escape the feeling that you are not completely alone; there is no easy way to communicate what you want or need; and there is no way that anyone will ever understand what you're going through. I've been going through this for a decade now. Nobody in my immediate family and none of my friends have a chronic illness. Nobody gets it. And, nobody probably, hopefully ever will.
Friday, February 8, 2013
The Last Week of 25
Next Thursday is my birthday! Yay!!
I've been reflecting on the past year, and thinking about my last week as a 25-year-old woman. Growing up, I thought 25 would be the age where I "had it all." And at five to ten years old, "all" meant a car, a house, a husband, some kids, and a job. I was not surprised when last year, I entered the 25th year, and I was two for five. Actually, I'll still be two for five come next Thursday. The wedding's not until June, and buying a house? HA! Right.
Anyways, I was a naive little girl. Houses require savings. Husbands require years of investment. And kids require a special quality that I don't happen to possess right now. Which brings me to my pre-birthday thoughts, leaving 25 and moving on to 26.
I've been reflecting on the past year, and thinking about my last week as a 25-year-old woman. Growing up, I thought 25 would be the age where I "had it all." And at five to ten years old, "all" meant a car, a house, a husband, some kids, and a job. I was not surprised when last year, I entered the 25th year, and I was two for five. Actually, I'll still be two for five come next Thursday. The wedding's not until June, and buying a house? HA! Right.
Anyways, I was a naive little girl. Houses require savings. Husbands require years of investment. And kids require a special quality that I don't happen to possess right now. Which brings me to my pre-birthday thoughts, leaving 25 and moving on to 26.
- At almost 26, I am without a doubt, still very selfish. And I still very much value my sleep and being able to do just about anything I want to whenever I want to. So, year 26 probably won't be the year for children if I have anything to say about it.
- I've been at my job for almost four years now. Wow! That's a long time, to me. I was hired as soon as I graduated college and was very thankful to be hired, in pretty much my dream job...at the time. I love working where I work, and there are so many people who have been there for 20, 30 years or so. I guess I just wonder if I have the desire to be a lifer there like everyone else. Year 26 might be the year to think about trying something new.
- I'm no longer as passionate about going to graduate school as I was at say, 24. I still want to go, but I guess just not right now. Plus, sh*t happens. Gotta get my new kidney first :/ I can't say 26 will be the year I finally apply, and I'm OK with that.
- I love living in my apartment and living the apartment lifestyle. And I love living close to the city and near reliable public transportation. I don't plan on moving before age 27.
- I've learned my drinking limit and FINALLY learned to stick to it. It's two drinks. And I'm sooo happy that it is! I still like going out and having a good time but I spend next to nothing on alcohol now. Savings!! And I love being the designated driver because that means I get to decide when we leave ;)
- I'm trying to remember if I felt differently about my family at 24 going on 25 than I do now. Nope! I still really, really like/love them and I still love going to visit them every weekend.
- New development: at 25 going on 26, I'm ,90 percent over Facebook. Yeah, crazy right? I'm not going to cancel Facebook (yet) and make a big deal about it. But I did kind of have this revelation one day of just...why? Why am I on Facebook? None of my real friends even communicate with me on Facebook anymore. I barely use the social networking site, and I really don't miss it. Which surprised me considering the fact that I acted Facebook-addicted from time to time. But who hasn't, you know?
- This happened sometime in October, but I've finally come to terms with the fact that I'm not always going to A) be invited to, or B) feel like participating in every event that my single friends have. When Ben and I first moved in together, we felt like we weren't getting invited to as many outings with our groups of friends. It hurt that our social lives had changed because we became cohabitators. But after talking to some "experts" about this we realized that this is a normal shift in dynamic. And after all, we're not exactly super interested in picking up members of the opposite sex anymore. If anything, I've learned that we might need to invest in some more "couple friends" who live nearby so that we can do couply things from time to time.
- No matter how many friends I may have, how great my family is, or how wonderful my fiance is, at nearly 26 I've realized that the relationship I have with God is the most important relationship I have.
- At almost 26, I can say that I don't believe there is a rhyme or a reason for why Ben and I have been able to stay together this long. Over the past 8 years, I've heard all the explanations for how things are supposed to go. I've heard that you can't marry someone you met in high school. You can't marry someone you started dating at 18. A former boss told me that you shouldn't get married in your 20s because you have to do a lot of stuff. I've heard you shouldn't live with someone before marriage. I've heard that you have to live with someone for at least five years before getting married or it's not going to work out. When I was an intern, a colleague of mine thought it might be OK for her to tell me that I was never going to marry Ben because we'd been dating too long. I've been told a lot of stuff about what brings a relationship to marriage, and Ben and I have been asked several times about the secret to a teenage relationship that started the summer after prom lasting this long without it looking like we're just settling for each other. And there isn't a secret or an explanation. What we have, is what we have. And you know what? It took me years to be OK with this, for the reasons I named above. I almost bought into the theory of what works for one person and one relationship, will work for mine. People are right, Ben and I had a lot of growing up to do in our teenage years and early, early 20s. And guess what--we STILL have a lot of growing up to do! But I suppose the real answer, if there is one, to lasting this long is that we made a commitment at some point to do our growing up together because we just really, really like each other. After all these years, filled with ups and downs, we still really like each other. And this is what works for us. And we're happy. My parents dated for six months before getting married. And they're still married. And if they'd bought into the opinions and theories of others, I probably wouldn't even be here!
Wednesday, February 6, 2013
Wedding Wednesday: Breaks in the Action
Although I'm ready to end this engagement and move on to married life (and new kidney life!), there are perks to having an engagement that lasts 15 months. I haven't always felt that way though. There are a few young women at my church and my job, and also my best friend Zarina, that are recently married. I was really jealous of those women because most of them had engagements that lasted six or seven months! I was jealous because A) they made it to the big day and were now living out there lives as wives with their new husband; B) they obviously had access to more money that I do, so they didn't have to spend months and months saving for the wedding; and/or C) they didn't feel compelled to invite 200 people to dinner, dancing, drinks and merriment. I think nearly all of these women had less than 100 people in attendance at their weddings.
You know one thing I really wished I'd done? I wish I'd had the sense to save a little bit every month, since the first year of college, maybe high school even, for my wedding. I know some people think it's a bit presumptious to begin saving for a wedding that hasn't even been planned yet, whilst not even engaged. But the part of me that's staring down reception menus showing up to $100 per plate is now kicking myself for not planning well enough ahead. It's not like I was indifferent to marriage. I've ALWAYS wanted to get married. And I've always wanted to have a wedding. These sentiments have not changed or wavered since I was about five years old. And I've been dating Ben for almost eight years!! So what was my problem? People save for college, trips to Europe, houses. Why not start early on saving for a big party like a wedding if you know you're going to have one someday, be it at 24 or 44.
Anyways, in my perfect world, I would have loved to have a short engagement. In the United States, the average length of an engagment is 15 months. I've heard that when you have a shorter engagement, you don't have time to pull your hair out over or be as picky about things. But one of my favorite things about taking over a year to plan a wedding is that I haven't been planning things nonstop. I've had whole months go by since last March where I really didn't do anything wedding related. After making our first big decisions (DJ, photographer and date/venue), Ben and I went to Florida. And I didn't do anything else for a month and a half. And we've had other lulls, I guess you can call them. Now that the wedding is inching closer, I can't afford to take entire months off anymore (unless I want to kill myself come May). But last week for instance, we had a bit of a lighter load for wedding planning. We set a limit for how many people we'll invite to the rehearsal dinner, finalized a dinner napkin color, and confirmed that I was going shopping for a flower girl dress for Ben's niece to wear to the wedding.
Then we set up a long list of things we want to accomplish in February. And it is long!! Ben and I agreed that this month is going to be devoted to ceremony planning, which we're pretty excited about. My best friend from college is planning to do a reading that we'll be editing together this month, and we're planning to meet with our officiant, my second cousin! And next week, we'll be spending a very special Wedding Wednesday at premarital counseling. I think it's a half-day workshop.
Our ceremony isn't going to be especially long, but I'm really looking forward to it. I know there's a lot of people who, despite their affections for the couple getting married, just go to weddings for the open bar. And as past and future guest, I hear ya! Open bar is AWESOME. But I also love being able to witness the union of a couple, both people digesting the meaning of each line of the vow they say as they say them, learning through their readings and the officiant's speech what it means to them to promise to look after each other forever. I love seeing the unique fingerprint each couple leaves on the ceremony, from the song selection to the participation of their loved ones. Ben and I are having a Christian ceremony. But even if you have a civil ceremony, it's the moment of making those promises and vows to one person before a group of people that makes this part of the wedding so special.
Until next Wedding Wednesday, here's a pretty, pretty picture of the pretty, pretty princess who will be covering the aisle with flowers on our wedding day :)
You know one thing I really wished I'd done? I wish I'd had the sense to save a little bit every month, since the first year of college, maybe high school even, for my wedding. I know some people think it's a bit presumptious to begin saving for a wedding that hasn't even been planned yet, whilst not even engaged. But the part of me that's staring down reception menus showing up to $100 per plate is now kicking myself for not planning well enough ahead. It's not like I was indifferent to marriage. I've ALWAYS wanted to get married. And I've always wanted to have a wedding. These sentiments have not changed or wavered since I was about five years old. And I've been dating Ben for almost eight years!! So what was my problem? People save for college, trips to Europe, houses. Why not start early on saving for a big party like a wedding if you know you're going to have one someday, be it at 24 or 44.
Anyways, in my perfect world, I would have loved to have a short engagement. In the United States, the average length of an engagment is 15 months. I've heard that when you have a shorter engagement, you don't have time to pull your hair out over or be as picky about things. But one of my favorite things about taking over a year to plan a wedding is that I haven't been planning things nonstop. I've had whole months go by since last March where I really didn't do anything wedding related. After making our first big decisions (DJ, photographer and date/venue), Ben and I went to Florida. And I didn't do anything else for a month and a half. And we've had other lulls, I guess you can call them. Now that the wedding is inching closer, I can't afford to take entire months off anymore (unless I want to kill myself come May). But last week for instance, we had a bit of a lighter load for wedding planning. We set a limit for how many people we'll invite to the rehearsal dinner, finalized a dinner napkin color, and confirmed that I was going shopping for a flower girl dress for Ben's niece to wear to the wedding.
Then we set up a long list of things we want to accomplish in February. And it is long!! Ben and I agreed that this month is going to be devoted to ceremony planning, which we're pretty excited about. My best friend from college is planning to do a reading that we'll be editing together this month, and we're planning to meet with our officiant, my second cousin! And next week, we'll be spending a very special Wedding Wednesday at premarital counseling. I think it's a half-day workshop.
Our ceremony isn't going to be especially long, but I'm really looking forward to it. I know there's a lot of people who, despite their affections for the couple getting married, just go to weddings for the open bar. And as past and future guest, I hear ya! Open bar is AWESOME. But I also love being able to witness the union of a couple, both people digesting the meaning of each line of the vow they say as they say them, learning through their readings and the officiant's speech what it means to them to promise to look after each other forever. I love seeing the unique fingerprint each couple leaves on the ceremony, from the song selection to the participation of their loved ones. Ben and I are having a Christian ceremony. But even if you have a civil ceremony, it's the moment of making those promises and vows to one person before a group of people that makes this part of the wedding so special.
Until next Wedding Wednesday, here's a pretty, pretty picture of the pretty, pretty princess who will be covering the aisle with flowers on our wedding day :)
Monday, February 4, 2013
Living for the Weekends
So today, I'd meant to post an interview with my sister Jocelyn, since she's voluteered to be my donor and since it's her birthday tomorrow. But I failed. Super Bowl Sunday preparations got the best of me. It only comes once a year!
Instead, here's a snapshot from my weekend, featuring my super cute flower girl. I'll post more on our dress shopping experience on Wedding Wednesday.
Friday, February 1, 2013
"A handful of patience..."
In some of my very first posts, I think I hammered it home pretty hard that I am addicted to planning. I love just planning out my day, my grocery list for the week, my weekend, my chore schedule, my personal time. It's like I need to do it. I've gotten A LOT better about not planning as many things over the years. Ask any of my friends. Some might wonder, what's wrong with being a planner? It's good to have some structure and some idea of what you're going to do with the next day, month or year of your time here on Earth. I wholeheartedly agree. But speaking from experience, there is a such thing as going off the deep end and developing chronic planner syndrome.
How do you know if you have chronic planner syndrome? A good indication would be if you burst into tears when your friends show up late to catch the bus to New York for a spring break trip (which you planned, of course). They were late, so yeah you have a right to be mad. But calm down, there was a bus leaving right after that one.
Spontaneity has its place in our world. I know this now. But I am a recovering planning addict and I have to take things one day at a time. It's been quite difficult for me, believe it or not, to refrain from...PLANNING MY TRANSPLANT! Yes! Can you believe that? I know right! Planning a transplant? Who does that? Well, I've been trying not. But it's pretty hard to not stare at my calendar and say "You know what? That week would be a good day for me to have my transplant because then I can meet with the venue to go over the catering menu one last time and then arrange to have my hair trial right before it's time for me to leave for..." And it just goes on and on and on. Sad, I know. 25-years-old and I'm still learning: I cannot control everything. Things will happen when they're supposed to happen.
I have to remind myself to refrain from getting frustrated with my sister, my amazing sister who has graciously volunteered to test as a potential donor. I have to remember that it's not her fault that nobody answered when she called to schedule her appointment. I have to remind myself that it's OK that she didn't give the appointment coordinator three specifically different dates for when she could do her tests. I have have to remind myself that it's not a big deal that the message she left was 0.7 seconds shorter than the voice mail I would have normally left. Every, single, day I have to do this. And it doesn't stop there! It's sad and I know I need to change if I'm going to stay sane until June. But seriously, if I don't have my new kidney by June I'm going to...just kiiiddding!! See, I have to check myself every now and then.
Last fall, I participated in a Bible study at my church on the fruits of the spirit. One that I should probably digest more of over the next few months: patience. I need to partake of a neverending buffet of patience so that I may wait gracefully, trusting and believing that God will make a way, that everything will be OK once I'm on the other side of this mountain of a health struggle. Sometimes it's good to cry and scream, "UGH, I just want this to be overrrrr! Gaaawwwwd!" But I'm actually getting better at being a grown-up, and telling myself, "Calm down. We'll be there soon. Now take your iron pill and go watch T.V."
I do wonder though, will my kidneys wait? Will they wait for the doctors to finish all their tests, and clear their schedules? I really need my kidneys to just hold on, just for a few more weeks. Dialysis is not what I'm trying to do right now. But really, neither is this situation.
To remind myself that THINGS ARE HAPPENING, I am officially listed now. What does that mean? It means that when it's time for me to get my transplant, my insurance company will pay the other $128,000 of the $140,000 procedure. Isn't that nice of them? And it also means that if a deceased kidney comes in (meaning a kidney from a donor who has just died), I could get that too. So yeah, stuff's happening.
One of my favorite songs on "Patience" is from Dreamgirls, the musical. Needing the reminder more than ever now. Happy Weekend :)
How do you know if you have chronic planner syndrome? A good indication would be if you burst into tears when your friends show up late to catch the bus to New York for a spring break trip (which you planned, of course). They were late, so yeah you have a right to be mad. But calm down, there was a bus leaving right after that one.
Spontaneity has its place in our world. I know this now. But I am a recovering planning addict and I have to take things one day at a time. It's been quite difficult for me, believe it or not, to refrain from...PLANNING MY TRANSPLANT! Yes! Can you believe that? I know right! Planning a transplant? Who does that? Well, I've been trying not. But it's pretty hard to not stare at my calendar and say "You know what? That week would be a good day for me to have my transplant because then I can meet with the venue to go over the catering menu one last time and then arrange to have my hair trial right before it's time for me to leave for..." And it just goes on and on and on. Sad, I know. 25-years-old and I'm still learning: I cannot control everything. Things will happen when they're supposed to happen.
I have to remind myself to refrain from getting frustrated with my sister, my amazing sister who has graciously volunteered to test as a potential donor. I have to remember that it's not her fault that nobody answered when she called to schedule her appointment. I have to remind myself that it's OK that she didn't give the appointment coordinator three specifically different dates for when she could do her tests. I have have to remind myself that it's not a big deal that the message she left was 0.7 seconds shorter than the voice mail I would have normally left. Every, single, day I have to do this. And it doesn't stop there! It's sad and I know I need to change if I'm going to stay sane until June. But seriously, if I don't have my new kidney by June I'm going to...just kiiiddding!! See, I have to check myself every now and then.
Last fall, I participated in a Bible study at my church on the fruits of the spirit. One that I should probably digest more of over the next few months: patience. I need to partake of a neverending buffet of patience so that I may wait gracefully, trusting and believing that God will make a way, that everything will be OK once I'm on the other side of this mountain of a health struggle. Sometimes it's good to cry and scream, "UGH, I just want this to be overrrrr! Gaaawwwwd!" But I'm actually getting better at being a grown-up, and telling myself, "Calm down. We'll be there soon. Now take your iron pill and go watch T.V."
I do wonder though, will my kidneys wait? Will they wait for the doctors to finish all their tests, and clear their schedules? I really need my kidneys to just hold on, just for a few more weeks. Dialysis is not what I'm trying to do right now. But really, neither is this situation.
To remind myself that THINGS ARE HAPPENING, I am officially listed now. What does that mean? It means that when it's time for me to get my transplant, my insurance company will pay the other $128,000 of the $140,000 procedure. Isn't that nice of them? And it also means that if a deceased kidney comes in (meaning a kidney from a donor who has just died), I could get that too. So yeah, stuff's happening.
One of my favorite songs on "Patience" is from Dreamgirls, the musical. Needing the reminder more than ever now. Happy Weekend :)
