I'm Thankful for Everything

I'm sure I don't have to tell you that Thanksgiving shouldn't be the only day that you "give thanks" for all you have.  Reflecting on the ways the God has come through for me, blessed me, saved me when I didn't deserve it, granted me favor, loved me and even just plain listened to me is something I strive to do every day, at least a few times a day. 

I feel like the words "Thank You" are not enough.  They just aren't enough.  I feel like we need some kind of long German word for when you're feeling immensely grateful for something and want to express your gratitude but you know the words "Thank You" aren't enough.  Is there a German word for that?  

Anyway, I'm not going to start listing off things I'm thankful for because I can't list everything. It won't fit into this post.  And if I attempt to my heart just might explode.  If you read a few posts on this blog you'll get a good idea of some of the things I'm thankful for.  One of those "things" is you.  

Thank YOU for coming here for the first time, or coming back here for the second, third, or tenth time, and taking the time out of your day to read what I have to say about...anything, really.  I really appreciate it.  You're one of the reasons why I keep writing. It's been such a joy to share my life with you, and I've been so honored that some of you have chosen to share your life with me. 

So yeah, thanks for being here.  I see you. And I love you.  

“Every time I pray, I mention you and give thanks to my God.”

Philemon 1:4

Happy Thanksgiving.  Here's a bit of Thanksgiving reading if you're interested:

I'm thankful for my husband and our awesome marriage

I'm thankful that I got a new kidney from my dad

I'm thankful that God is faithful

I'm thankful for my sisters/family

 

Life With...RRP

It is my pleasure to introduce you to my friend and colleague Laura!  I've known Laura for a few years now, and met her when she convinced me to join the union at our company.  And it paid off--our union was able to secure free healthcare that year for all the employees at our job! Crazy, right?!  Some things have changed since then (we have premiums now; whomp,whomp) but Laura is still one of the few people at my company who actually understands what life is like as a working sick person!  Enjoy getting to know Laura!

Who are you and what are you passionate about?

I'm Laura, a 34-year-old lawyer, journalist, and union activist. I am passionate about fighting for fairness, equality, and civil rights for everyone. Oh, and there's a special place in my heart for all things Disney.

Tell the readers a little about your disease, and how you reacted when you were diagnosed.

I have recurrent respiratory papillomatosis, or RRP for short. A lot of people have heard about the human papiloma virus (HPV). RRP is a rare type of HPV that grows mainly on the vocal cords, but also can grow in the trachea, bronchial tubes, and lungs. The wart-like growths have to be removed surgically, usually with a laser, and—here's the recurrent part—they keep coming back. However, it isn't contagious and is definitely NOT an STD.

I was diagnosed with RRP when I was 11 months, so don't remember how I reacted. I'll bet my parents were a bit freaked out, though.

People with a chronic illness face a lot of challenges (A LOT)!  --What’s one challenge that you’ve faced so far in this journey and how have you dealt with it?

The biggest challenge with RRP is the repeated surgery. Like full-out general anesthesia surgery several times a year. I lost count a while ago, but I'm guessing my total lifetime surgery count is somewhere in the neighborhood of 300. 

It's not easy having to go to the hospital all the time, getting poked and prodded with needles and feeling like crap for several days afterward. I'm going to be honest--I've cried over it on several occasions.

But I'm a people person, so I usually crack jokes with the nurses and other staff while I'm there. I hate to admit it, but I like the high of the general anesthesia before it knocks me out and whatever drug combo they give me before that to calm me down. And throat surgery is a great excuse for eating ice cream.

Who or what helps you make decisions about your health?

My parents helped me at first, and my husband has been with me on this for the past 9 years. But the biggest help was actually the RRP Support Group I found on Facebook, a group specifically for patients with RRP and their friends and family. Everyone shares their experiences and different types of treatment their going through so that we're all up to date on the latest research. It's what made me decide in 2010 to start going to Johns Hopkins University Hospital, one of the best hospitals in the country (and only 45 minutes away!). That was one of the best decisions of my life.

I have a ton of funny and memorable hospital stories. Can you share one of yours?

My surgeon had me and my parents come in for surgery early in the morning because there was a chance he would have time around 8:30 to squeeze me in instead of the 3:30 time slot I was originally given (which really sucks when you can't eat or drink all day). Well, that didn't work out, but he insisted we stick around the whole freaking day just in case (I actually went for surgery at 3:40).

By mid-afternoon we were all tired and getting very slap-happy, when this doctor started walking back and forth in front of the waiting area and he seriously looked just like a pirate in scrubs. Of course my dad started making all these "arrrr" noises every time the guy walked by. In between standing on one foot on some wooden block that had come out of the wall.

What advice do you have for other people, young or old, who are living with your disease?

First of all, know that there are others out there like you, who share your experiences and your raspy voice. We may have a rare disease, but we're not alone!

But more importantly, don't ever settle for disease maintenance. There is no cure for RRP, but doctors and researchers are making breakthroughs in treatment all the time, and the latest one could make a big difference for you and your quality of life. Insist that your doctor pursue these treatments, and if he or she won't, get a new doctor.

And finally, what brings you joy?

My family, my friends, my union brothers and sisters, and good food!

If you want more information about RRP, Laura recommends visiting the website for the Recurrent Respiratory Papillomatosis Foundation.

TMI- That Time I Got a UTI from Buying Shoes

So, I had a UTI recently. 

Yeah.  We just went there.  

I don't know how many of you who read this blog have kidney problems, or bladder problems or UTIs ever.  But I'm just going to assume that some of you, maybe a small portion of you, have or know someone who has kidney issues.  Therefore, you are well acquainted with the UTI.  

Or maybe you're just a woman.  UTIs seem to LOVE women.  

If you are not a woman and have no idea what I'm even remotely talking about, a UTI is a Urinary Tract Infection.  It occurs when bacteria somehow finds its way into your urinary tract, which includes your urethra, your bladder, and the infection can also spread to your kidneys.  Women are more likely to experience UTIs because we have a shorter urethra, which makes it easier for bacteria to end up in our bladder.  The risk of UTI goes up especially if you are sexually active.  Ever wondered why you're supposed to pee after sex?  Well, this is why.  They leave so many things out of movie sex scenes.  I guess the parts where the woman jumps up, leaps across the bed and runs to the bathroom immediately after sex is one of the film strips that ends up on the cutting room floor. 

Other causes: not wiping correctly like your momma taught you when you were three, certain types of birth control, having a suppressed immune system.  I also heard somewhere, I don't remember where, that holding it ("it" being your pee) is one way to get a UTI.  I'm pretty sure that's how mine came about.  I held it for about two hours while shoe shopping after a dentist appointment.  I even asked the woman at the counter when I checked out with my new shoes if there was a bathroom in the store.  I still didn't bother going.  I'm pretty sure that's how I got my UTI.  DSW.  That new shoe smell seduced me and convinced me that it could wait.  Just try on 10 more pairs, it said. That was on a Thursday.

About five days later, things set in and just like I predicted, Tuesday morning I went to the bathroom, and something felt...OFF.  For most people, the first pee of the morning would be too early to tell if they had a UTI.  Especially since I'd yet to feel the REALLY BAD symptoms.  But I've had one UTI every year since I was 18 years old.  I've gotten use to the early signs. And being an ESRD and kidney transplant patient I am hyper-aware of my urinary habits.  Cameron Diaz, in a talk with Oprah about her new book, said something that I totally agree with:  ""Every time you go pee, you can look in the toilet.  You can see what color your pee is, what it smells like, and how often you've gone. And you can tell whether or not you need to drink more water or drink less coffee or whether or not your kidneys are being able to be flushed out. That's important to your body."  This is normal for me.  I highly recommend paying more attention to your urine. 

Anyhoo, first pee of that Tuesday morning: off.  Second pee:  still off.  Third pee:  OK...something's about to go VERY wrong, I thought.  As the day progressed, I started to take action to hopefully delay what I was sure would come in a few hours.  I downed water and peed as often as I could trying to help my body get rid of some of the bacteria.  Because if this did turn out to just be some mild irritation from something I ate or whatever else, I wanted to help my body along as best I could.  So it was drink and pee. Drink and pee for about seven hours.

I went home that night and told Ben that I thought I was getting a UTI.  He remembers the last UTI I had.  It ended with me vomiting and a trip to the E.R.  My husband is so wonderful.  He tried to tell me not to worry about it and that it was probably just a false alarm.  We had just heard this sermon from church about not letting our minds run wild with negative thoughts that have no bearing.  So I could tell what he was doing here.  But what I had wasn't a negative thought.  It was fact. I held my pee for two hours so that I could buy shoes and now I was about to pay for it.  

Just as we were getting ready for bed, it started.  The fire.  To sum it up, having a UTI is like pissing fire.  That's...about as best as I can explain it so I won't continue.  Just imagine fire.  Or acid.  Now, imagine that is your pee.  

I thought, maybe if I just continue drinking water through the night I'll eventually rid my body of most of the infection and I can get just enough sleep to go to my doctor in the morning.  I made it to 1 A.M.  That's when I left the bathroom, where I'd been holed up for most of the night, threw on my hoodie and some shoes and drove to the only urgent care center that was open 24 hours.  I guess that's the one positive.  I didn't have to pay possibly $100 for a visit to the E.R., and I didn't have to risk the chance that they'd want to keep me overnight for observation.  I knew that I'd be a target for that, having a transplant and all.  And once you check yourself into the hospital...you cannot check yourself out.  I had a big day of work in the morning and minimal sick leave so urgent care was the only answer. 

I peed twice at urgent care, and moaned and shook and sweat both times.  I couldn't even sit down when the doctor was telling me that I did in fact have a UTI.  He gave me a prescription for antibiotics to fill at a 24-hour CVS.  I arrived at the deserted CVS at 2 A.M. on Wednesday morning.  The pharmacist could tell exactly who I was because I was pacing back and forth and I asked her if I could use the restroom.  

I purchased a big bottle of water, some gummy bears and a box of crackers along with my medicine.  And there in the parking lot of CVS, I took my first does of antibiotics and ate that entire package of gummy bears.  Afterward, I drove home, went BACK into my bathroom with my Android tablet, and continued to piss acid until the antibiotics kicked in...around 4 A.M.  I slept on the toilet...in the hallway...on the bathroom floor with my face pressed up against cold tile and bits of kitty litter on my palms.  Then at 6 A.M. I finally made it to my bed, where I slept uninterrupted for about two and a half hours until I had to get up for an important day of work.  

Want to see a picture of the shoes I bought before I got my UTI?  Ok!  

 
Cuuuuuute, riiiiight?! I know. So cute.