Living for the Weekend-- Just Fall

Sugarloaf Mountain Hike in Maryland

Ah. I had a pretty great weekend. I hope you did too.  

I rarely make french toast but this Sunday called for it.

 
Ben and I got an early start to our weekend by going to a Nationals game with his dad on a Thursday night. GO NATS, by the way.

 

Then I met up with my SOUL SISTERS for a good dose of SOUL CYCLE.  Do you SOUL CYCLE?  You will after I write my blog post about it...or maybe you'll just think it's ridiculous and insanely expensive.  But don't worry.  You can still SOUL CYCLE while also knowing in your heart that it is ridiculous and insanely expensive. 

 

Add in a hike on a Sunday afternoon in PERFECT/SPECTACULAR/THEBEST weather...and I was pretty much in heaven.  I didn't even mind coming back to work this Monday morning.  THAT is how good of a weekend I had.  Here's hoping the rest of this week shapes up to be just as awesome.  

Anyhoo, come back Wednesday if you want to learn how to make your own granola!

Faith Through Hearing-- If It's Broke, He'll Fix It

Happy Friday Readers!

I can't thank you enough for coming back to this blog time and time again.  It really means a lot to me.  I hope you liked the interview I did with Julia.  If you haven't read it, go check it out!  

I haven't done a "Faith Through Hearing" post in a while. But recently I got inspired to share something I read in my daily devotional.  I'm finishing up Pastor Rick Warren's 22-day plan "Life's Healing Choices."  And I really like it.  Here's an excerpt from one of the daily reads:

 "Don't waste your pain.  If you hide it and hold it back, it doesn't do any good.  But if you're honest with God and yourself and with other people, God can use the thing you hate the most in your life, that you're most disappointed by, that you wish had never happened.  God says, 'You can't change what happened to you.  But I can use it for your benefit and for my purposes.  When you're willing to share your brokenness, I can use it to help other people." 

That passage really hit a nerve with me.  

I've shared a lot with you all on this blog.  And sometimes, I think back on my old posts and wonder, "Should I have shared that?  Should I have written that?  Was it too negative?"  I've thought about going back and changing certain things that I've written, especially some of the more negative or sad-sounding posts.  Because, I honestly am in a better place now!  I'm healthier and happier and I look back and see how this trial of living with kidney disease and having a transplant has transformed me into the person that I really want to become.  I always tried to remind myself of Romans 5:3 and Romans 8:38, that good things would come of it, but I didn't always believe it.  

I've shared on this blog the many times when I felt broken.  When I was broken.  When I wished and hoped and prayed that kidney failure had never happened to me.  Being in a trial is hard!  You do feel hopeless at times, and your faith can be shaken.  And I had to constantly remind myself of who God is, and what his promises are.  

If you're going through a painful situation right now--and it can be anything; it doesn't have to be kidney disease!--I just want to remind you that God is good. He is good.  And just know that once you have been tested you WILL have a testimony.  And that testimony will be used to bring others to the one who rescues us, who heals us and loves us.  

God is good.  You will be OK.  And good things will come of this.  

"He comes alongside us when we go through hard times, and before you know it, he brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us."  2 Corinthians 1:4 MSG

Anyhoo...
Here's a picture of me with a wolf-dog.  Yes a wolf-dog.  I met him at a cafe last Friday and he tried to eat my gelato.

 

Life With...Rheumatoid Arthritis

Welcome to "Life with...", the first post in what will hopefully be a monthly series of interviews with young people living with a chronic illness, waiting to receive an organ transplant, or currently living with an organ transplant.  So, without anymore rambling from me, meet Julia! 

 

Julia Parrish, blogger at These Awkward and Arthritic Adventures

In one sentence, who are you?

I'm Julia; an awkward nineteen year old with rheumatoid arthritis who is a lover of books, baby animals, and birthday cake ice cream.

What are you passionate about?

The main thing I'm passionate about is awareness for rheumatoid arthritis, which branched into a passion for others with disabilities and illnesses. It makes me super happy to interact with others at summer camps, and nursing homes, because there is something truly amazing to see the joyfulness in someone when their lives are less-than ideal. 

Tell the readers a little about your disease/ailment/illness/syndrome/health annoyance, and what it was like when you were first diagnosed.

Currently, my primary diagnosis is juvenile rheumatoid arthritis, and it certainly is a health annoyance. It's an autoimmune disease which affects the joints and immune system as a whole, which means I do a lot of hobbling around and being sick.  When I'd first been diagnosed about six years ago, the concept of juvenile arthritis had been something I was completely unaware of, like plenty of people I'd been under the impression that 'only old people got arthritis,' so it was a bit scary. Since then, I've grown to understand and take charge of my illness a bit more, and realize that arthritis doesn't have me.

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

To be honest, it's a bit devastating as nineteen year old that pretends they're adult enough to know everything, to put aside that prideful attitude to ask for help. It's a challenge to say "Hey, I know I'm going to a party with my friends, but can you brush my hair for me because I can't reach?" It's easier to deal with it now that I just try to be my same sarcastic self and see the humor in the situations I face. 

Who or what helps you make decisions about your health?

Definitely my parents. Even though I'm the type of person to Google every symptom, medicine, and treatment myself (and get terrified on WebMD), my mom takes me to the doctor and asks questions to decide what's right for me. They've always treated me like an adult about my health choices, but they also always know what's best for me.

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

One memory that comes to mind was during a jaw joint injection procedure, in which my anesthesiologist was this hilarious and great guy, that just decided to be our best friends that morning. He'd been so ridiculously excited for us to try this restaurant that he had gone and printed off the menu to have us look. It was definitely memorable, and funny to us because we just looked at each other and were all like "alright then." 

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

Just laugh about it. If you take things too seriously, you'll just be a grumpy person with bad joints, which is never a good mixture. There's too much to be thankful for and find humorous in life to sit around sulking about all that's bad in your life.

And finally, what brings you joy?

Funny cat videos on the internet, bad puns, getting the last slice of pizza, and knowing that I have ridiculously amazing people in my life.  

PLEASE PLEASE PLEASE 

Go read Julia's blog, "These Awkward and Arthritic Adventures" 
and leave a nice comment for her!

If you are living with chronic illness, waiting on a transplant, or have received a transplant, get at me and you could have your face on my blog next month!

Sick News & More

I couldn't just end the week with that heavy post about my marriage on Wednesday, right?!  

How about some pictures?  

The first picture is a selfie of Burton and me.  The second picture is just some of the food we ate this week.  Biscuits and blackberries and barbecue chicken with corn salad.  Yes, the theme is summer food, and it's the last summer weekend.  

Even though fall leads into hell a.k.a winter, I've vowed to make the most of the next two seasons, with reduced complaining, a lot more laughter, and an attempt to continue spending as much time outside as possible.  Coming up, Ben have some camping trips planned, our annual visit to Oktoberfest, and we're taking his dad to a Nationals game, one of the last regular season games before they go on to win the World Series.  Yeah, I said it.  

OK want to read some news?  
"It's long been known that eating too much salt will raise your blood pressure, but a comprehensive global study now says that too little salt in your diet also can harm your heart health."

What do you think?  I still think salt is evil and will continue living Lo-So for now.  Making minor adjustments to your diet, like cooking one or two meals from scratch every day, and having two pieces of bacon instead of four, can decrease your sodium intake little by little.  

What are you going to cook this weekend?  Sharing is caring.  

Peace.
 

The Truth About Marriage

Ben and I got into it over the weekend.  "It" being a yelling-match.  And I spent about 36 hours being incredibly pissed with him, with myself, with the situation.  I was pissed over how our perfectly planned weekend that started out with us renewing our vows had devolved into a maddening cycle of "I said-but you said" frustration.  It was this weekend, 15 months into our marriage, that I realized truly what the heart and the work-aspect of marriage is all about. 

As I said, the weekend started out great. Ben and I attended a one-night marriage conference at our church where our pastor pretty much broke down why relationships fail.  I'd say that half of the tips and advice was stuff we'd already learned in pre-marital counseling, but it's always good to reinforce those points when it comes to staying married for years and years and years.  Believe it or not, women do need to be reminded that men need, and may want, sex more than women do.  That's how it be sometimes, I guess.

The conference ended with all of the married couples renewing their vows, which was incredibly romantic.  It wasn't until the next day that all those tips and pieces of information we'd just digested managed to fly out the window.  

One of the top reasons relationships fail: unrealistic expectations.  And having those expectations could be the blame for one simple question turning into a complicated interrogation between two people who are supposed to love each other, much less like each other.  

But here's the thing: about 18 hours after our initial disagreement, and about 6 hours after our rehashing of said disagreement, I had a revelation while layering a lasagna (Sure, I was angry with my husband, but that didn't mean he or I had to starve.  So yes, I made a lasagna. It took me two hours. But it's the BEST lasagna).  The revelation was that at that moment, and during our argument, I didn't particularly like what Ben was saying.  I didn't like his thoughts on what I was asking him.  I didn't like the way he approached it.  At that moment, and what was turning into the rest of our "relaxing weekend," I disliked him. I really disliked him.  I know you're probably thinking "BUT JEWEL...you've been with Ben for almost a decade!  I'm sure you've felt like this before!"  Trust me, I've been mad at Ben. And I've been hurt by things that we've said to each other. But I had never felt this intense emotion of dislike for Ben because, well, he's my best friend.  I tend to like my friends.  

After acknowledging that I really disliked him, I started to think about how I didn't actually want to make him dinner.  I started thinking about how I didn't even want to talk to him. Or even be in the same room with him.  I started thinking about how I didn't feel like being NICE to him, and, possibly worse, how I didn't even feel like RESPECTING him.  Then, if things weren't bad already, I started thinking about how UNFAIR it is, that I have to do those things, even when I really dislike my husband!  I started thinking how being married to Ben meant that I had to love him, even when I didn't like him, for the REST OF MY LIFE.  NO EXCEPTIONS. I know it sounds crazy, but the weight of that fact hit me with full force while I was standing over the stove. I was so mad  I would have started throwing lasagna noodles had I not been so hungry already.  

The thing is, marriage is really easy when you're out on dates. Or rolling around in bed.  Or celebrating a holiday.  It's easy when you adopt a new kitten, when you've just celebrated your anniversary, and after a New Year's kiss.  

Being married becomes the "work" that everyone talks about when you don't particularly like your spouse for a moment or a day or 36 hours.   Loving someone, showing them honor, respect and forgiveness, even when you don't like them, can be as heavy as trying to bench press your car.  It goes against everything we feel as humans, as flesh and blood. But it's perfectly in line with how God longs for our interactions with each other to be.  Slow to anger. And quick to forgive.  Never selfish.  

Cutting to the chase, Ben and I made up.  And we talked about why we were arguing and how our "unrealistic expectations" got in the way of us having the great weekend that we were hoping to have.  And I know I complained a lot about how hard it is to love someone even when you don't like them.  But I was immensely grateful for the respect and forgiveness and love that was being thrown my way.  I'm thankful for a husband who still manages to love me, even when I'm highly unlikeable.

The hard part of marriage: choosing to love someone when you're not happy with them.  The best part:  someone choosing to love you even when you don't deserve it. 

Web Crawlin'

It's the last week of summerrrrrrrrr.

I'm sad.  

But here's a happy face!

A happy late-summer harvest from our balcony!  This year was the first year that Ben and I experimented with gardening.  Here you see some super 100 cherry tomatoes and two ripe jalapenos.  But we also grew basil and parsley.  The mint didn't survive unfortunately.  So no...I have not had a mojito all summer long.  

Here's some stuff that I discovered on the interwebs recently:  

A CNN article about liver transplants .

The reasons I try to stay away from all processed foods and spend my free time slaving away in the kitchen. 

One of the things I love to cook when I am slaving away. 

Are you a polite person?  This essay made me me want to make some changes in how I talk to people.   

Do you have kids?  If you do, apparently my life is 10 times better than your life in several areas except for happiness.  

Hope you had a great weekend. 

Return to Metro

Last Friday, I FINALLY went back to my original nephrologists at Metropolitan Nephrology.  The last time I made an appearance in their offices was apparently in January, and the last time that I was SUPPOSED to go see them, was actually in April, right as I was checking into the hospital for having no immune system.  

Returning to your original doctors can be pretty significant.  It usually signifies to the patient and to the hospital doctors that things have finally normalized  That the kidney can function without me having to go to the hospital every week to get urine and blood taken.  That I can take a breather from having to digest all the different lab results and adjust to all the changes in my medications.  Returning to my original doctors gave me some peace of mind for once, during a summer that's been hectic as far as doctors visits, lab visits and bouncing levels of white blood cell counts.  

Whenever I'm in my original nephrologist's office, I'm always reminded of one thing:  that I am lucky.  Blessed.  You'd think that over time the "congratulations" and "how are you doings" from the nurses and doctors would die down. Yeah, I had a kidney transplant.  But it was a year ago.  Why all the fuss still? I figure they must see this all the time.  But in reality, they probably don't.  I think it's more likely that they see someone who's much older than 27.  We're talking more like 67, because as soon as I sit down in the lobby at my doctor's office, I get the glances from a few older people, reminding me that I'm the odd woman out.  One of these things is not like the other, you know.  But I'm more like them than they know.  And I'm also unlike them.

As I walk back to the doctor's office before getting my results (everything was normal, minus a 1.9 creatinine level; a tad high), I sit in the "patient's chair" zoning out on my phone.  Sifting through the latest articles on Us Magazine and whatnot.  One of the nurses walking down the hallway stops and yells into the room, "Jewel! So how are you doing?  How's your dad?" And I give her the verbal thumbs up.  "It's just so great, isn't it?" she says when I tell her that I feel good.  I nod and smile and let her know that it really is.

---

Before I left my appointment, my doctor had to check a urine sample I gave him.  I sat in the waiting room reading through my lab slips and appointment summaries and a new sheet that they're handing out to all of the patients.  It's a sheet about kidney disease, the risks, how to prevent it and how to treat it. The first question on the sheet read "Are you at risk for kidney disease?"  Considering that I was already sitting in a kidney doctor's office, giving me this information seemed like a little too late.   But even upon a first read, I couldn't tell if I was still at risk for kidney disease or not, because I no longer have any of the symptoms they usually assign to a person with kidney disease. 

As the doctor came out to tell me my urine test clean and that everything was OK, I grabbed my stuff to leave.  Before I opened the door, I turned around and yelled "Hey Doc, I was reading this form.  I think I may be at risk for kidney disease."  

We both laughed.  

Living for the Weekend

How was your weekend?

Pre-Church Selfie, Health Granola, bag of Sweaty Clothes

I started this weekend by being healthy.  Have you ever heard of SoulCycle?  It's the newest spinning workout that everyone from the Kardashians to David Beckham to your mom is doing.  Essentially you agree to have someone clip you into a very expensive stationary bike (clipping in makes it so that you can't run away), yell at you to give it all you've got while trying to pedal very fast up a steep imaginary hill, and then you sweat like nobody's business.  And it's all done to this sick playlist of music.  It was torture.  But I think I kind of loved it?  



After that I went to a restaurant and proceeded to order chili, mac and cheese and corn bread.  Then on Saturday I had mozza sticks at the draft house showing of Maleficent and ate mint oreo custard to end the night.  

Then after church on Sunday I had boneless buffalo wings, some fries, and a TALL beer.  For dinner on Sunday, I had some of my mom's mac and cheese, corn pudding and turkey wings.   

All this to say...yes...I'm going to SoulCycle again on Wednesday.  

One other bright(healthy) spot in my weekend: I made my own granola!  My adventure in homemade granola cooking will be up on the blog this month.  

Welcome to Monday.  Godspeed this week.

Sick News

My thoughts on today's news about sick people.

Do you have paid sick days?  You know, days that are given to you by your employer to use specifically for times when you fall ill, have a doctor's appointment, or need surgery?  

Photo from Flickr

At my job, we get 13 paid sick days every year, in addition to a s&*t-load of annual leave to use however we please.  Trust me, I know I'm lucky.  At Ben's job, the managers just shifted from allowing all of their employees access to UNLIMITED sick days (yeah...that was a thing) to a paid time off (PTO) system.  Everyone just gets a pot of days to use however they please. None of them are designated sick and none of them are designated vacation.  

Part of my job involves following what happens in the labor world, and I was a little embarrassed to find out that the United States is the only developed country that doesn't mandate paid sick days.  And the state that I live in is just one of the 48 states that doesn't require employers to give workers paid time off to use for reasons related to an illness. 

I don't know how you feel about that but I think that's pretty messed up.  Just like our health care system, the lack of a requirement for sick leave is another way that I'm reminded that people with chronic illness are often left to fend for themselves.  Before health care reform, we were forced to face rejection letters from insurance companies saying we were too sick to deserve coverage.  Without a federal sick leave mandate, the government basically gives us the "tough luck" speech when it comes to having to take time off to deal with our health. 

Well California just became the second state in the country to require that employers give out paid sick leave, at least three days of it.  I was in the hospital in April for four days.  And that was JUST a hospital visit.  Three days of sick leave wouldn't even begin to cover the amount of time I've spent getting lab work done, sitting on an exam table at a doctor's office, or sitting in a hospital bed for four hours getting liquids for dehydration.  

Sick leave should NOT be compared to annual leave.  None of us added chronic illness to our roster of life events in the same way that people make reservations for sight -seeing tours in Italy for a second honeymoon.  Going to the the doctor is not a vacation.  Staying in a hospital is not a weekend at the spa.  You can choose what day you want to fly out for your trip to Miami.  You don't choose what day your body decides to stop working properly.  

Living for the Weekend -- Labor Day Love

Labor Day

Minus 1

My sister Danyelle had to work and couldn't make it in time for the family photo.  But expect to see her in a few weeks for her birthday.  

I hope y'all had a great holiday weekend.  I hope you ate too much and had to unbuckle your pants.  I hope you drank lots of Spanish punch (aka Sangria) and had one too many scoops of fruit pie or cobbler.  And I hope you spent as much of it outside, sweatin and smilin', as I did.  Labor Day reminds me that me summer is slipping away too quickly in fact.  Just three more weeks of my favorite season.  *Tear*

The next few weeks will usher in a lot more new content for this blog. And I'm really excited about it. Thanks for allowing me the grace to soak up my favorite time of year, even if it meant that I was away from my computer a little more often than usual.  

Stay free.