Thursday, June 26, 2014

How I Got To Meet Shaun White, Bad Things, and Sarah Barthel

Like most people I know, I have a bucket list... things I want to do before I die. When you have a chronic illness, it makes it even more important to have a list and try and complete those things as early as possible. I'm pretty sure that 90% of my Cystic Fibrosis/transplant friends have some sort of bucket list!

I was able to cross one of the things on my bucket list off on June 14 when my daughter graduated high school. Statistically speaking, I shouldn't have been there to see that. Not only the statistics that come along with Cystic Fibrosis but also the ones that come along with having had a double lung transplant.. you know... only 50% of those live five years after transplant and only 30% live ten years. I'll be 13 years out this coming November. I'm truly blessed and in awe of life and the things that I'm still able to do and accomplish!

For those of you who know me well (or even those who are only acquaintances of mine), you know that I adore Shaun White. I'm an extreme sports fanatic, and it doesn't get any better than Shaun White. Plus, I've always known he's a good guy with a big heart. What he can do on a snowboard (going 24 ft off the backside of the halfpipe and mastering all that he has in height and difficulty) is so amazing to watch. He lets his fans experience it with him (yay GoPro), so we can all have that same feeling of accomplishment and see his dedication and hard work!

So, of COURSE, one of the top things on my bucket list was to MEET SHAUN WHITE! I honestly never thought it would happen. You don't think things like that will happen to YOU! It's just inconceivable to think that someone with so much fame and so many fans will make the time for you. It's a dream, not a reality.

Having said that, I set out to make that a reality when I bought tickets to see Bad Things open for Phantogram at The Fillmore in Charlotte on June 25, 2014. I did a little begging on social media for some backstage passes, and although I didn't get any responses, I still had hopes that somehow, someway, I would get to not only meet Shaun but all of the wonderful members of Bad Things (which has become my favorite band since buying their album in January!) Here's a video of one of my favorite songs of theirs Caught Inside by Bad Things!

My daughter kind of reluctantly went with me to the concert. She had listened to Bad Things with me and had heard one song from Phantogram that she liked, but she was still not feeling it. She's such a sweetheart, and she knew just how much this meant to me, so she went, and she sat in the heat with me without complaint 1 1/2 hours before doors opened, so that we could be right up front against the stage.

Had we gotten there five minutes later, we wouldn't have had the opportunity to meet Sarah Barthel of Phantogram. She saw about ten of us sitting outside in 90 degree weather under big umbrellas, so she came outside to thank us and get selfies with us. We were all flabbergasted at how down to earth and nice she is!!! She is truly a beautiful person inside and out!!! She's a doll as you can see here!!!

Me, my daughter, and Sarah

Since Casey and I had VIP tickets, and we were the first ones in the VIP line, we got to go in first. I knew exactly where Shaun stands onstage, so we were at the front, right in front of where he plays! We had to wait another dreadfully, anticipatory long hour before Bad Things finally came out. I literally got dizzy when they did. I'll blame it on the lights and sound, but I'm pretty sure it was because THE Shaun White was standing right in front of me... almost close enough to touch! They were awesome! Their frontman Davis LeDuke is so funny, and he really gets into the music. He's an entertainer for sure. Here are some pics from the concert (the best I could do with a cell phone). 

Lena (pronounced Lee-nah) Zawaideh, drummer and vocalist

Davis LeDuke, lead vocalist and frontman with Anthony Sanudo, guitarist

*cough, cough* Shaun White, lead guitarist

Phantogram came on after Bad Things, and WOW, they blew it away! They gave an awesome performance, and Sarah has SO much energy onstage. I'm not sure how she does it. She's adorable though and can sing.. man, that girl can sing. Josh Carter is the other vocalist, and he has an amazing voice also. They moved around a lot, so it was hard to get any good pictures of them, but here is what I got! 

Sarah Barthel, vocalist and keyboardist

Josh Carter, vocalist and guitarist with Sarah in the background

SO.. how did I get to meet the members of Bad Things? Casey was exhausted. She had stayed up most of the night before, and someone had spilled beer all over her shoes at the concert.. yeah, no fun!!! We kind of just hung around the stage watching them take everything down, and then I asked her if it was ok to go buy some merchandise. She said yes, so we went to the table, and the entire band of Bad Things was there selling CDs and shirts. Well, everyone except for Shaun. He really likes to hang back and not take the spotlight away from the other band members, and I think that's so cool of him!!! 

Casey and I both bought shirts, and we talked to Lena, Davis (who had a cold and was nice enough to wear a mask because of it), Anthony, and Jared (bassist of the band). They were all so nice and Davis actually cropped Casey's top for her that she bought. It's quite crooked, but looks really cute!!! We were all laughing and having a good time. Here are some pics from meeting them. 

Lena and me

Me and Jared Palomar, bassist 

There weren't many people left in the venue at this point, so as I was talking to Jared, I did something that I've never done before in my life.. I pulled the "sick card". Now all of us with CF, or other chronic illnesses HATE to pull the sick card. We have to use that card enough when having to turn down engagements with friends or other fun things because we feel so bad (had the concert been two nights before, I wouldn't have gone because of issues I was having), and we don't want our lives revolving around it. But I also know that any infection or chronic rejection could take my life in a flash, and I had to seize this moment!!! I simply told Jared that I had a chronic illness and that meeting Shaun was on my bucket list. I asked if he was around. He SO eagerly went to find him. I still didn't have high hopes that he would come out from backstage, but at least it seemed "likely" that I might get to meet my idol! 

We waited about five minutes, and then across the room, I see Shaun coming out with Jared. I looked at Casey, eyes wide open, and I think I smiled one of the biggest smiles of my life. She asked if I was ok. I said "yeah, I think so". Of course the few girls that were still in the venue and spotted him stopped him along the way, and I just waited ever-so-unpatiently until Jared came over and told Casey and me to come with him. 

After the girls stopped fawning over Shaun (heehee), Jared grabbed him, pointed my way, and said "this is Christy". Shaun gave me the biggest hug!!! I just put my hands in my face and shook my head. All intelligent thought was lost!!! I had so many things I wanted to say to him, but what came out of my mouth was "I've watched all of your stuff"! Seriously? I've watched all of your stuff? What does that mean? I felt like a giddy school girl! He laughed and then we got a few pics. Before we took a pic, he took his beanie off and ran his fingers through his hair. I knew he was sweaty from being onstage, so I told him that I liked the beanie, and I thought it would be cool for the photos. He said, "really? ok!" 

We talked about a few more things that I can't remember and then I thanked Jared, Anthony, and Shaun, and we left. My moment to tell him how awesome his sportsmanship was at Sochi, how I KNOW he's perfected the triple on the halfpipe (but yet to let his fans know), how I watch every interview he's in, how I never miss the opportunity to watch any competition he's in, etc, etc, etc was lost. That was it. It was still one of the most memorable experiences of my life, and marking that moment off of my bucket list was beyond anything I ever imagined! 

My daughter Casey, Shaun, and me

Shaun and me right after the biggest hug!

Today, the feeling about the experience is bittersweet! I've seen him, hugged him, talked to him, so I don't have to strive for that anymore. I can move on to the next item on my list..... like watching Shaun snowboard. :) 

PS.... Phantogram shared this pic on all of their social media of Sarah and us waiting outside in the heat. So awesome! Casey and I are on the left. I'm in a similar outfit as Sarah! :)

Friday, April 25, 2014

College, Health, and Bands

Being a mom is a beautiful thing! It is synonymous with the most joyous of joys. It is precious, and should always be treated as such. It can bring happiness, heartache, and worries. Correction: it WILL bring those things.

Watching my daughter grow up has been such a gift. I am beyond blessed to have gotten the chance to have my own child, unlike so many with Cystic Fibrosis, and to still be here with her, watching her transition into young adulthood 18 years later.

Her time as a high school student is coming to an end soon. She will be moving on in life to the next big step: college. I will be an empty-nester. I will be heartbroken, but I will be joyful that she is transforming into the person she is meant to be, the person God wants her to be.

I can already feel her independence... see it everyday, in almost every way (no, I'm not trying to write a poem). She is pulling away like children are supposed to at the age of 18. She doesn't need me in ways that she used to need me. She will always need her mom though, and I will be here for her in every way that I can be. Sometimes I just want to hug her and never let her go, but even during those times, I'm eager to see where she goes in life and where her purpose lies.

Casey will be attending Duke University starting this fall. I'm beyond proud of all that she has accomplished to be able to attend such a prestigious university, and I know she will continue to do great things during these next four years and beyond. We recently went to visit Duke during Blue Devil Days, a two-day event that shows prospective students what Duke University is all about. It was very informative, and I thoroughly enjoyed visiting the university instead of the medical center or hospital. What a nice change!

Here are some photos from the trip:

My sister had a dinner party for Casey and her boyfriend Alex. Alex is going to ECU, so we obviously had a theme that included both Duke and ECU.

Now, an update on my health:

I had a visit with my lung transplant team this past Monday. My lung function has increased since my last visit because of some antibiotics I was given for my sinuses. These pesky sinuses drain into my beautiful lobes and they aren't happy about that. I'm extremely grateful that it's not progressive chronic rejection. My pulmonologist will just keep putting me on antibiotics when my sinuses flare up, which is about 4 or 5 times a year. 

My kidney function is what's concerning right now. I'm in acute renal failure with a creatinine of 2.9. I'm drinking water like crazy to try and bring that number down. I have an appointment with my transplant nephrologist next week to see what the next step will be in all of this. Hopefully, my number will be better, and we won't have to do anything at this point. I'm currently on Cipro for a UTI, and that causes nausea and vomiting, which further dehydrates me, so I'm trying to drink over 2 liters of water a day. That's a hard thing to do when you aren't thirsty. I read an article years ago that said most people with CF walk around dehydrated all of the time, because we don't feel thirst like healthy people do. I do sometimes feel like I'm drowning having to drink this much! I'll do it though! My kidney is a precious gift from my mom, and I don't want it failing on me. 

I feel like I never have anything exciting to say about Jason, but he enjoys his job, loves me and Casey, and is doing well. Sometimes no news, is good news! :) 

Lastly, I'm super excited about this coming June. I get to mark two things off of my bucket list. One, of course, is to watch my daughter graduate high school. I'll be sending a picture of my daughter and me to my old CF pulmonologist in Charlotte who was the one who referred me to Duke for transplant. I remember asking him if he thought I would live to see my daughter graduate high school, and he said yes. Casey was five years old at the time.

The second thing that I (kinda) get to mark off of my bucket list is meeting Shaun White. Ok, I don't really get to MEET him, but I will get to see him and his band Bad Things play at The Fillmore in Charlotte. They will be in concert with Phantogram, a band that Shaun's girlfriend Sarah Barthel fronts. Jason and Casey are both hesitant about going with me, but I'll get one of them to go. It's my chance to at least hear Shaun play the guitar, even though I'd rather see him snowboard (not ruling that out as something I'll do in the future). Now, if someone could just hook me up with some backstage passes, I'll be good! 

(yes, that's Shaun White's signature on the Bad Things CD, so I already have his autograph)

Thanks for reading. I'll update again in about three or so years.... kidding! 

Wednesday, April 9, 2014

Why I will never buy anything from Caché again

Prom dress shopping was supposed to be a fun experience. My daughter and I went to Caché in Charlotte, NC to buy her a prom dress. She found the one she wanted, but the dress at the store was damaged, so they ordered one for us that would be sent straight to our home. About a week later, I get a phone call stating that the dress was not available in that size anymore. My daughter liked another dress she had seen there, but we decided to look around at more stores before settling on that one.

Several days later, my husband noticed that we had been charged for the dress that we ordered, but that wasn't available. I called the store, only to be told that I would have to come to the store for them to give me a return; a return on a dress that I never received. I asked to speak with a manager, and they told me to call back later. I called back the next morning, and the manager said she was the only person working, so she asked me to call her back in the afternoon. I called back that afternoon and asked to speak with her. She said that they were busy and she needed 10 minutes and asked if I would call back in 10 minutes. I finally got her to refund that dress that was never my dress to begin with over the phone.

After looking at other stores and not finding anything that my daughter liked, she decided to order the other dress from Caché that she had tried on that first day. I ordered it online with no problems, and I received it in the mail about 5 days later. It had a security tag on it that looked like it needed a device to take off. I called the store in Charlotte to ask about it, and they told me just to bring it down to them and they would remove it for me. I made a complaint to Caché's online customer service department. I wasn't asking for a discount. I just mentioned that they should check the items for security tags before shipping them out.

A day later, I got a return email that said I should be the one to remove the security tag (by that point my husband had figured out how to remove it), and that if it was removed, the dress couldn't be returned. I'm not talking about price tags or other paper tags attached to the dress. I'm talking about the security tag that the store removes for you before you leave the store.

I then decided to place an order for a bracelet and earrings that my daughter had tried on with the dress. I went online to do this, but it said that the order had not gone through and that the problem could be with Caché's website. I tried 4 more times on three different brousers in the next four days to no avail. I had received no confirmation that the order had been placed, only emails stating I still had items in my shopping cart. No charges had been placed on my credit card, so I assumed none of those had gone through.

After searching a bit on the website, I found the customer service number, and I called them and placed the order (let's mention here that their phone service cuts the representative off at certain points, so you are left guessing half the time at what they actually have said). This was after calling the store in Charlotte to see if they had the items, which they didn't. The order went through with the customer service representative, and I received a confirmation in my email about it.

The next day, I look on my credit card bill, and I had four different charges for the jewelry order. As you can imagine, by this point, I was furious with this company. Retail customer service should NOT be this difficult. I called a customer service representative (again with their phone service cutting them off at almost every syllable), and I told them about the charges and said that I would be giving them a bad review because of everything I had been through in dealing with their company. I was angry, and the customer service representative hung up on me. I then called back and spoke with a different customer service representative who was about as helpful as a used paper towel. Nothing was done to fix this problem.

I am still in the midst of trying to get these charges taken off of my credit card. Caché is supposed to be an upscale retail store, but I know that I would have gotten better service from someone at Walmart. I will never shop there again, and I urge any of you who are thinking about it to think again.

Tuesday, March 25, 2014

If, and when life ends.....

Things I realize everyday... I will die. Everyone does. No one is invincible. I will probably die before I want to or think I will. My family and close friends will grieve.

Where am I getting this from? From my OH TOO numerous friends who have passed away from CF or transplant complications. They were sisters, brothers, friends, spouses, mothers, fathers, and all were children of a mother and father.

I don't pity myself. I sometimes do pity my friends.. those who haven't been able to graduate from college, raise a family, achieve their goals, etc. But I don't pity myself. My daughter alone has given me enough LIFE to be happy with what I've accomplished. Do I want to see my daughter succeed in college like I know she will, and see my grandchildren? YES, absolutely! But, if I don't, I still think I'm the most blessed and highly favored of them all. My girl is my world, and she is 18, almost entering college, and she is independent and sure of herself. That's what I wanted. That's what I strived for! She loves God, and she wants to serve Him after her degrees. It couldn't make me any happier. Do I love my parents, sister, and extended family? YOU BET! My mom has given me life three times. There is no repayment for that, except thankfulness. I'm thankful!

I love my friends.. you know... Nicole, Rhonda, Anne-Lewis, Angela, Kristin and everyone else who has stood by me through thick and thin. Then there is Lori, who succumbed to this disease way before I did. She was there for me too.. always. I have been so blessed and highly favored. If life ended tonight, I couldn't compain. I could only be thankful. I love you all!!!!! Family and friends.. thank you! XO

Monday, March 3, 2014

Oscar Fashion 2014

Oh, how I love reviewing style choices on the red carpet. However, I may have skipped this year had it not been for my amazing best friend Nicole. Thanks Nicole for making me work my brain tonight to come up with some reviews.

Like I did two years ago, I am going to only tell you my top five best dressed and top five worst dressed. As always, I look at the entire look, not just the dress, and I never, ever look at any other reviews before doing mine.

I'll start with my best dressed choices. I'll count down from my fifth choice down to my first. Then, I will go to my worst dressed in the same way, with number one being the worst. It wasn't very hard this year to come up with either list.

As always, I welcome and want your responses, your comments, your choices. Please comment on here or on my Facebook page. You can even comment anonymously here if you want.

This year, we had a lot of the same, monotonous dresses, but that happens every year. So I will focus on those that were different; those that didn't go with the flow, those that didn't stay with the trend, and those that took some creativity and thought.. even if they were horrible.

Remember, that I look at these actresses both onscreen and in pictures. I give them all a chance to shine, but unfortunately so many don't!

Let's begin with my best dressed list starting with number 5:

Let's take a look at Naomi Watts. For one thing, I absolutely love Calvin Klein's sophisticated, simple designs. Kudos to Naomi's sons for helping her pick out this dress The white gown with detailed beading and capped sleeves was stunning on her. She is one of those actresses who doesn't need a train or sheer cutouts to stand out on the red carpet. I absolutely loved her statement spider-webbed necklace and her swept up 80's hair... yeah folks, it's coming back. Her simple black and white geometrical clutch paired with her black shoes added just the right amount of contrast to her entire look. Her make up, as always, was impeccable.

Ok, I'll be honest with you. When I first saw Kristen Bell on the red carpet, I could only see the top of this gown. I was like "meh". Then I saw the dress from head to toe in a better lighting, and I can certainly see why she chose this sophisticated number. The strapless, corset gown has a lot of detail, even though it is a muted grey in color. I really liked the beadwork and the layered, ruffled mermaid bottom. The train added just the right amount of awe to this dress. Her diamond necklace (I adore necklaces on the red carpet), her perfect updo, and her great make up job completed this stunning look! 

Wow, did Sandra Bullock surprise me tonight. To be honest, I'm not usually fond of her style choices. Tonight, she looked like a movie star. Her navy/royal blue gown, with a sweatheart neckline was so elegant and stunning on her. I loved the way that the fabric of her dress gathered and crisscrossed at the side of her waist in contrast to her side-swept hair on the opposite side. It just all worked! The way it fell in front of her with the train behind her made it a flowing piece of art. Her simple diamond jewelry and simple, but classy make up gave her an exquisite overall look. Go Sandy! 

Charlize.... you were one of my best dressed last year. You obviously can't do wrong. I absolutely love her hair short! If anyone can do it besides Halle Berry, it is Charlize. The black, form-fitting Dior gown that she wore tonight blew me away. The sheer straps, low neckline, formed bodice, and layered mermaid bottom all just synced perfectly to eloquently showcase a gem of a celebrity. The diamond drop necklace was so absolutely perfect for this gown, and I would have cringed had it been anything but. Thank you Charlize for always showing us what Hollywood and poise should be! 


Lupita, OH Lupita. Can you ever do wrong? I cannot describe the state of awe I was in when I saw Lupita on the red carpet tonight. She said that she chose the color because it reminded her of Kenya. It just reminded me of a dream. This powder blue number that had a v neck that matched the v in the back, a belted look, and a full, pleated train that had lines of blue beading on it was the most stunning dress of the night. Her simple, short hairstyle with her rhinestone headband, and her simple gold earrings and bracelets were in perfect contrast to her dress. Obviously when Prada and Lupita Nyong'o get together to make a dress, they do it well.. no, they do it perfectly. 

Honorable mentions tonight include: Portia De RossiKerry Washington, Kate Hudson, and Jennifer Lawrence.

Now, we have the worst dressed of the night. I really hate this part, but they have to be mentioned. Hopefully, they will not repeat this again next year. Yes, hopefully, they will read my blog. :)

Sally, hun, what were you thinking? This nightmare of a dress made my eyes hurt. This beaded, pearled, embellished nude number was atrocious. I don't mind long sleeves on the red carpet, but this just looked like something a 2nd grader would design with the contents of their craft drawer. I'm not really fond of gold and ivory thrown together like someone vomited on it either. The hair? Well, let's just say she needs to see a hairstylist pronto. 

People always get on Angelina for doing her own thing. This year, she decided to jump on the nude, metallic bandwagon and unfortunately, she failed miserably. The bateau neckline with the long sleeves and belted center all could have worked. BUT, it didn't. I think of an old chandelier that had it's day back in the 1700s when I see this gown. Obviously, Jolie's hair and make up are perfect as always, but the dress makes me want to barf on some metallic, shear panels. No Angelina, just no! Stop trying to be so matronly when you are not even 40 yet.

Anne Hathaway was one of my worst dressed last year, and amazingly she had a similar dress in the way of the cut as she did at last year's Oscars. She just doesn't have it going on, and I really think she needs a new stylist, if she even has one to begin with. I don't mind her in black, but the triangular rhinestones on the bodice of this dress are hideous. Had it just been a straight halter dress with no embellisments, she would have just landed in the boring zone and not the worst dressed zone. Like last year, I think she picked out her gown hours before the event. I'm adoring her short hair, and obviously she has a great body, so why does she pick the gowns that she does? One will never know! 

Cate, Cate, Cate! She looks like she is going ice dancing instead of attending the most watched awards show on tv. The shear Giorgio Armani gown with metallic embellishments (that she even admitted were too heavy), looks, well, too heavy. There is nothing flattering about this gown, and it clashes horribly with her skin tone. I do like her old Hollywood hairstyle and her GORGEOUS earrings, but her gown leaves many to think that her sons grabbed any metal object from their garage toolboxes to slap on this horrible, nude gown. Get it right next time Cate! Let's go to the Oscars instead of to Disney on Ice!


Anna! You definitely get my worst dressed of the night. You are such a gem, but you certainly showed that you need a stylist when you debuted this "gown" tonight. The sheer cutouts at the top, sheer waist with star-like gems, and hideous pleated bottom of this gown made me wonder what you were smoking when you picked it out. I just have no idea. There was nothing pretty, sexy, flattering, beautiful, classy, or elegant about this number. You got it wrong sweetie, and for that, I'm giving you the worst dressed gong of the night! Let's try to do better next time!!!

Please let me know your opinions, and don't hesitate to disagree with my choices. I love all of your input. Thanks for reading!!!