Sunday Night

But in good news, look what came in the mail:

From the company http://puravidabracelets.com/

(Yes, I do have a pura vida tattoo also.)

New support bracelets for me! The fiery red & orange one is for my new diag-nonsense. 

The peaceful sea-blues are in honor of the http://www.joyfulheartfoundation.org/ which was founded by Mariska Hargitay (Detective Olivia Benson on Law & Order: SVU) is also near and dear to my heart, life, and being. 

That's not usually something I go into on this blog, but obviously it's a real [past//PTSD] issue in my life too. This blog still won't turn it's focus there very often. If you have any questions about it, just ask me.

Last night I watched Elizabeth: The Golden Age and loved a line she said:

"I have a secret, my dear. I pretend there's a pane of glass between me and them. They can see me, but they cannot touch me. You should try it."

I've lived like this, in some aspects, for a long time. Yet in my last blog post I challenged myself to stop. In accordance with my new strive for deeper vulnerability and openness, I mentioned that dark part of my past life; the one I wear a sea-colored bracelet for (or sometimes a purple bracelet which simply represents DV).

And now, in the same thread of thought, I embrace my own challenge and share this:

You may have seen this photo on my FB or IG. I love it. It's my Marilyn picture. You may now be thinking that a sexy picture in a slip isn't the openness I should be sharing. Don't worry, it's not.

In my blog on "looking sick" I mentioned I've gained weight, and in my last post (Robin Roberts) I mentioned being more open and vulnerable. So I'd like to show you the less model-y "real-me" version of that same photograph.

Yup, stomach, back, arms. I'm a thick girl. That being said, I do love BOTH versions, although in honesty I like the airbrushed one more. It looks more like who I remember being... when I was allowed to exercise, when I had a life, when I played adult soccer 3 hours a week and coached 16 hours. But that's not me *today* so I'm trying; I'm practicing an effort to learn to love that second picture more...to reject society's ideals and to accept that simply being exactly who I am in this moment is more than enough. 

So there's my beginning of letting the wall down even more. No more glass pane. And with that, I draw nearer to the ever-promised blog post on my specific ailments and what each has done to cripple me.

Thank you always for your promised prayers, dedications, thoughts, comments, messages, etc. I wouldn't be me without you all. 

MUST Read & Watch: Robin Roberts' Arthur Ashe Courage Award

"Make your mess your message."
"When fear knocks, let faith answer the door."

When I was in the height of my playing days, I was inspired by Briana Scurry more than anyone else. I trained nonstop and planned to play Division 1 college soccer, then professional. If there wasn't a league, I fully intended on being a part of forming that. I was going to do it. It took 5 knee surgeries in my high school years to put the brakes on those plans. I'm stubborn, if nothing else. Michelle Akers took over as my hero; another female soccer superstar, only one with extreme health problems.

A lot has happened in my life in the last decade since I graduated from high school. Regretfully, knee surgeries are looking like a cake walk in comparison to the health struggles I now face. I have adjusted to life as a dedicated sports fan, as well as one can. I coached, until my health made me stop. I played in adult leagues, until my health made me stop. My now-husband was the Sports Editor of the newspaper that I was the Editor-in-Chief of in college. Sports will forever be a huge focus in my life. My sorrow is that struggle after struggle, they keep being taken away from me, to the point that I am now just another fan on the couch.

I do vote for the ESPYs, and watch the show, despite arguing with most of the awards and feeling that my fellow fans are mostly idiots if they vote the way they do. Still, how can I not vote and watch the spectacle? Last year I vividly remember the bonding experience of voting with my dad, who was much too busy to watch the amount of sports programs I did. So I showed him the video clips of each category and we voted together.

This year I voted alone, occasionally inviting Kevin to give his two cents. Tonight, I went to dinner for 6 at my family's favorite hole-in-the-wall Italian restaurant, as an early birthday dinner for ME (July 23, turning 27). I had time for an hour long nap before the ESPYs, because my medication sucks. I could've been asleep for the night at 8pm. Kevin woke me though, knowing I've been looking forward to the debacle.

Over the past few years, I've taken great joy in seeing how women's sports and specifically women's soccer have become more a part of the ESPYs. However, this year the number one moment for me was watching Robin Roberts receive the Arthur Ashe Courage Award. Roberts has already greatly affected my summer with the Nine for IX ESPN feature series she produced.

Roberts has quickly taken over as my newest inspiration. She was a strong athlete, turned sports journalist, turned major broadcast journalist. Then she became a cancer survivor, and again last year beat death again in the form of MDS (an illness caused by cancer medications -- pay attention to science news: chemo causes nearly as many problems as it solves!). Robin faced both her illnesses with incredible courage, and all under the public eye, in a way that NO ONE has.

I relate so much to her struggles, and the things she said in her acceptance speech. Now, I admit both cancer and MDS are life-threatening; none of my several diagnoses are terminal. However, none of my diagnoses have a cure. So in a way, for me, that balances things out. She could have died from either condition; for me, the fear isn't death, it's life like this.

She fought her battle in the public eye, and showed how vulnerability can equal strength in a unique way. I have always been an open book, except in matters that make me scared or hurt. I'll tell you anything I think or feel or have done, unless it is something that might make me cry. Over the last several years, one of my life/spiritual journeys was finding the courage to be vulnerable. One of the ways I've put that into practice is not being able to cry in front of people.

A much more significant way I've practiced that life lesson is, duh, this very blog. I strive to have the courage and strength to invite any of my readers, friends, and family members into my life. To share my utmost weaknesses and fears, in hopes that it can be a two-way street of you all helping me, and me helping you.

If you didn't watch that video at the top, please go watch it. If you did, watch it again and think of me. Because I watched it real time, sprawled on the couch hugging Blaze with Kevin petting my hair. And God love him, with that animal instinct, when I started crying, Blaze literally hugged me. He wasn't just laying alongside me; he tucked his neck around mine, then licked my tears. He knows things.

I am scared that my life will always be like this. I am scared that I will never get better. I am scared that I will only get worse. I haven't been given much reason from the medical community to think anything different. I am told things like, "make sure you have a good therapist" and I am asked why my insane cocktail of medications does not include an anti-depressant. Some days I feel that I've lost the fight in me, and on those days I just hold on til the next day. I feel I have lost most of my dignity and strength. I do not drive more than a few miles alone; if I have to drive farther than that I have to skip medications. I live like a child, or an elderly person, in that I have to be bathed. I cut 9 inches off of my hair because I can't wash or style it. I don't shower or dress alone. I cannot be left alone for long, because I forget almost everything short-term, like to take my pills in 5 minutes.

Showering with your SO isn't sexy when it is your routine to be bathed. Being brought breakfast or coffee in bed doesn't seem special those things are the only way for me to physically be able to get out of bed. I am a week from turning 27. I should be living vibrantly. I should be in my physical prime. The athlete I once was should've stayed fit into her mid-20s. I should NOT be living this way. Nor should my 29-year old husband. Most people cannot imagine what our life is like, and I wish it on no one. Yet through this, people think I look well. I have to fight and beg and plead to get put on disability. I got kicked off of my insurance because of my health conditions (shouldn't that be illegal?!).

Listening to Robin Roberts' speech it dawned on me that continuing to be even more forthcoming is the only thing to do. Sharing my struggles, my pain, my devastation, is currently what I have to contribute to the world. It's also the only way I can ask or hope that my loved ones will understand.

My Aunt Angie told me she'd put money down on me getting better, and I had to call her out on having little experience with betting since she seems to miss the concept. I told her maybe we'd all be better off if she picked up the money and instead spent time talking to the big guy upstairs.

For the Roberts video alone, I feel this is my most important blog post to date. But in the near future you will (finally) see the post detailing my specific health conditions and what they entail. That will also be hugely important, because most of you don't know my actual conditions. And even those of you that do will, sadly, find a new condition on that list. One that has flipped my world upside down again in the last few days. Thanks for reading, praying, caring, loving, etc... And in the near future, as things take the turn for the worse that seems to be coming, thanks in advance for your love and support. And again, please rewatch that video. I can't without crying.

Looking sick

My diseases all fall under the blanket category of invisible illness. I often am told I "don't look sick" but I am told I look tired. A lot. I've also gained a significant bit of weight. But most people tell me I carry it well or that it's not too noticeable. I, of course, am full of depression and low self-esteem and find this hard to believe. I see the extra pounds on my body and the bags under my eyes.

I wear make up with much more frequency now, because I need that confidence boost of feeling pretty. I NEVER wore make up all through high school and college. I also wear make up because it gives me more motivation to not cry. There's not much more unattractive than teary mascara streaks.

A dear friend sent me a link to this blog today: http://mywifesfightwithbreastcancer.com/. She challenged me not to cry while perusing it, and she successfully predicted I'd fail at that attempt. I give you all the same challenge. I also take with me, at least for right this moment, the inspiration to be even more open and vulnerable via this blog.

Occasionally I post less than beautiful photos on here, on injection day or whatnot. But I still really favor pretty pictures, both here and on Facebook. I'm trying to have the courage, in a multitude of ways, to make my illnesses less invisible. So let's do it.

Sometimes I wear makeup & try to be pretty or sparkly or at least look AWAKE:


Right now I can hardly keep my eyes open. This is legitimately how I look in this moment:
 

And if I TRY to keep my eyes wide open this is how it turns out:


Let's be honest... Those are some serious bags under my eyes. I'm going out to dinner with family. And I will be putting make up on in the car.


But the important message here... That brave man and his tragic loss of his wife. We live in a society that tries to look away from the sad and yucky things. We live in a culture in which curvy women feel the need to defend their bodies. And sick people feel the need to hide it. The message is that vulnerability is BAD. And I'm trying to fight against that.

Maybe letting people in is a good thing. Maybe sharing your weakness can be strength. Maybe. Just maybe.

Love Me via Google Gadgets! (+pretty pix)

Hey all...

My blog probably looks slightly silly layout wise (over on the right---the about me isn't on top). Above the "about me" are two new Google gadgets. Use them. They're for your convenience. My gift to you. Really, just new ways to subscribe to or follow this blog.

It was already possible to subscribe if you had a Blogger account or get my posts delivered via email. However now you can subscribe just by having a Google or Google+ account. I swear, it's that easy. You're welcome ;)

Of course I want to edit the layout and put all the subscribe options together. That would be pretty, and make sense. But I can't because I'm currently on vacation in paradise. The cottage doesn't have wifi and the layout of this blog is not easily done on the app. I need a real computer. Oh well. First world problems

In the meantime, use the new subscribe tools so I don't always have to bombard FB with links to every new post. If you subscribe I'll know you like me, you really do! (And now you know I'm shamelessly begging for attention!) 

Oh, in the meantime you can enviously enjoy the following pictures. Be home soon!

Washington Nationals and Thompson Square

***disclaimer: I wrote this blog on Saturday, July 6. I then went on to forget to post it until now. Read it as it it was July 6***

Today we got to attend the Nats game vs Padres! Thanks to my Father-in-Law, who is a season ticket holder (with club level seats). Kevin and I have it real tough with his parents... spending the week at their lake house, then coming home to borrow their club passes. 

 

Sadly I spent nearly half the game on the club level, not the seats. You can see how lively I look! And believe me, the lighting of this picture is generous and masks the bags under my eyes.

I'm on a 5-day stretch of a CFIDS flare up. Tuesday & Wednesday I literally couldn't get out of bed. Wednesday I was also running a low-grade fever, just over 100 degrees. I got up okay on Thursday, and even thought I could do stuff. I put on festive make up and a holiday outfit. We went out for a bit to see cute little shops on "the bridge" which is essentially a Main Street type of strip, but on docks/a pier. By the time we were done with that (an hour & a half) I was exhausted and could barely stay awake during the 5 minute car ride home. Around 6 pm I crawled into bed to rest. I missed family dinner; then my in-laws left for fireworks around 8ish. I told Kevin I'd gladly sleep away the night and he could go, but he stayed to take care of me, reminding me that I'm the nut with the unhealthy holiday obsession. We watched fireworks on TV. Friday I developed a lovely hacking cough, which I went to bed with, only after sitting on the bathroom floor for an hour with the shower on high heat for steam to loosen things up. And loosen they did! Saturday morning I woke up and coughed out a disgusting handful of mucus. Gross, bur clearly a success!

Anyways, Dad uses his points to get us free or discounted tickets in other sections regularly, but it's of course an extra special treat to get his club seats. He let us have his tickets today because the Nats concert series brought in the band Thompson Square. If you've been paying attention you know that my blog is named after a Thompson Square song: "If I Didn't Have You"

You might also know some of their other songs: "Everything I Shouldn't Be Thinking About," "My Kind of Crazy", "Are You Gonna Kiss Me Or Not," or "Glass."

Despite feeling and looking like death, I thoroughly enjoyed the concert. My most favorite thing was that they are a real life married couple. They perform like Johnny and June, singing love songs obviously meant for and about each other... Not just putting on a show. They are starry-eyed in love with each other and living their dream. It's beautiful and inspiring. 

I'm a Married Lady

Tuesday was our 5-month wedding anniversary. At 1-month we went out to dinner. The day before our 2-month was Opening Day and we saw Harper's opening 2 HRs. The next day we got the news that our application for our very own first place together was approved! Our 3-month fell on a weekday when I was modeling in a hair show<~~pretty pictures! The weekend before we had our Open Housewarming Party and a Nats game. The following weekend was jammed pack full of non-romantic stuff. Four month wasn't scheduled to be a thing, but I got a surprise lovely gift.

But at 5-month, we didn't even notice until my dad texted me wishing me a happy anniversary. The amusing thing is Kevin & I weren't even talking to each other (over a stupid fight--we're really good at those) when that text came in. So in bitterness I said, "Daddy wishes us a happy anniversary." It was probably the first thing I'd said in over an hour. I'm incredibly mature. Needless to say, marriage has made both of us good at apologizing. 

Anyways, it's really true that I'm married. I mention it pretty regularly on here, but for my long-distances loves I have photographic proof to share with you! I probably should've shared this a while ago, but what's that saying about better late than never....?

For those of you who don't know the specifics, our wedding was very intimate and small, and planned very quickly (and I mean weeks quickly, not months). It was kind of a shotgun wedding, only I wasn't pregnant. Coming from a large family, we opted to only include immediate relatives, or else a domino effect would ensue (if we invited this person, so we have to invite that cousin...) We were married at Kevin's parents' home, the day before the Super Bowl. My parents were married at her parents' home, the day of the Belmont Stakes in 1982.

The plan was to keep it around 10-15 people. It escalated quickly to 30. Because of Kevin. I could've stopped at 10, easily. He has a lot of best friends, and they all have spouses. Still, it was pretty close to the small, intimate, personal day I wanted. We had no bridal party, although anyone could see Ashlei-Rene was quite clearly my maid of honor, and handled the job with perfection. I wore a silvery dress from Macy's, no big poofy white princess gown. Kevin wore a suit he had worn as a guest at a wedding one week prior. Blaze was the best dogman. I had a simple bouquet and Kevin wore a simple boutonnière. We spent the night before the wedding together and even went out for breakfas. We were together up until about 2pm on our wedding day.

Originally my dear friend, Lynn, was going to wed us, but due to a strange Virginia law (fact: stating a person with a religious ordination, must actively serve a congregation) she was unable to marry us in the state of Virginia. So Kevin's childhood friend's father, a real life Pastor/Reverend/he-didn't-give-me-his-title-just-his-first-name, graciously stepped up with about 5 days notice. Sidebar: marrying your cousin, your first cousin, is totally legal in Virginia. 

To honor my heritage (and our actual preferences rather than traditional wedding pretenses) we had all Italian food. I wasn't wearing white so I didn't have to worry about spilling red sauce! Homemade lasagna, garlic bread, and salad. For dessert we opted for cannoli (my personal favorite & not just Italian, but Sicilian) and tiramisu (his favorite). It's not that we dislike cake, but it doesn't rank high on the favorite dessert list for either of us. So thankfully we actually got to eat at our wedding!

“Let him kiss me with the kisses of his mouth: for thy love is better than wine.”
– Song of Solomon 1: 2

All photos are courtesy of C. F. Harrington Photography (unless otherwise noted).

 

Blaze was happy hanging with me pre-ceremony.

 

About an hour before the ceremony, a light dusting began. It was freezing, but my Cameron, my photog, and I decided it was good luck and a must do for some majestic snowy princess fairytale pictures.

Mom handing me my bouquet. Sadly for her, my perfectly small and intimate wedding stole from her a lot of the typical  Mother-of-the-Bride things. The only others we shared were a pre-wedding mani/pedi and lingerie shopping (which will not be pictured!)

The pre-wedding party upstairs was much more fun for my monster than the ceremony itself. He didn't enjoy being made to sit still in a room full of friends. I also believe those eyes are objecting to the union, because he prefers his mommy all to his little self.  

Pre-wedding, since I was ready waaaaay early, I had an impromptu party upstairs (where I was hiding from Kevin). Anytime one of "my people" arrived, I invited them upstairs to see me. Someone told me that's not traditional--everyone is supposed to ooh and ahh over the bride upon her entrance, but I'm nothing if not unconventional! Daddy and I shared a pre-wedding dance, to "Butterfly Kisses" because I've always said that would be our daddy-daughter dance, should I ever tie the knot. Ironically, I had never intended to tie the knot. Ever. "Butterfly Kisses" is my song with my Daddy, but we'd always laughed at the idea of ME being married. But I digress...our small wedding didn't include music or dancing, so this Daddy/Daughter dance moment came courtesy of my iPhone playing a music video (and came with more judgment of my lack of convention from others because I was yet married and Kevin and I weren't having a dance). Two things to say to that: 1-Whatever, I do what I want. And 2-It's my party and I'll cry (or dance or socialize) if I want to. 

Upon being married, I immediately inherited two beautiful nieces. I couldn't be more in awe of these little beauties, but they're still unsure about me. Lorraine and Lilliane (Lily-an not Lily-Ann, but we just call her Lilli). 

My handsome groom. 

And our lively pastor. 

Kevin appreciates my candor and tells me I can share whatever I want on this blog. So in full disclosure mode I will say that this photo of Daddy "walking me down the aisle" occurred only after he practically dragged me down the stairs and ordered me forward. I stopped going down the stairs no less than 3 times and it had nothing to do with the difficulties of walking in heels. Moments before he and my brother were privy to the greatest single moment of terror in my life to date. 

I haven't asked Ash what she was thinking during this picture, but my best guess is she still thought I might be a Runaway Bride. Weddings terrify me (even as a guest!) and forever is overwhelming. I never paused when getting ready; there was no break in me stopping and reconsidering (though I had a Thelma and Louise plan for if Kevin no-showed). But I did share with her that I had this terrifying fear that I would be physically unable to speak during the vows and the "I do" moment. 

My 2nd Momma [Warfield], Wifey, Moo (with David hiding behind her), Mommy, and Father-in-Law--who sweetly video taped the wedding for us (which was an amazing gift, because I had a sober blackout and don't remember anything that was said during the ceremony. I just know I tensed my shoulders damn near up to my ears and I shook a lot.)

My nieces spent the ceremony crawling on the floor, much of it at my feet. That's their loving mother, my sweet-sis-in-law, sitting with them. 

I inherited two brother-in-laws. One was too sick to fly in from Cali sadly, but he was Skyped in, as was one of K's childhood besties. Also, brother was just in town last week so I finally got to meet him. Nothing but warm welcomes from my new family. Everyone of my new family members is someone I would choose for a friend, so I believe I hit the in-law jackpot!

Lorraine could seriously be a child-model. And I don't think that's familial bias. She's a beauty. 

There's a baby at my feet! Sweet Lilli was all giggles and happiness. Sis-in-law said she thought Lilli's happiness and draw to me was a good sign that she was comfortable with me. All good omens when joining a new family!

My feet are also bare, because I wanted a barefoot ceremony, but I wanted to walk in wearing my Cinderella shoes (that I originally wore in a beauty pageant at 18 years old and were previously shown outside in the snow dusting). On our wedding video there is a terribly awkward moment of me suddenly remembering I'm wearing shoes--then Kevin and I whispering about it, instead of listening to the pastor. Just like two kids in school! Of course our conclusion was that I could subtly (not!) slip out of them mid-ceremony. That video moment is priceless. 

At first I thought Blaze came over. My FIL told me there was a moment when I noticed the girls and turned away from Kevin and the pastor to look at them. He said for half a second he (and everyone probably) was terrified that I was upset... But then I quickly broke into a huge smile. 

Then I worried it'd turn into the scene from the Nutcracker where about a dozen children come dancing out of a woman's dress. (This reference may only make sense of your oldest friendship is with a ballerina)

Also, thank goodness I was wearing good coverage panties, because I think she peeked up the slit in my dress!

My flowers, but this time there are wedding bands on both our hands!

Baby girl with my FIL who is more commonly known as "Dzedo" (the D is silent). My MIL is "Baba". These are bohemian/Czech names for grandma and grandpa. (I kind of wanted to be Zia Shanley, but there's no way that'll stick)

My in-laws, minus my California brother. 

My lifelong ballerina bestie, and perfect, flawless, MoH....

And my Moo! I don't think any of K&my pictures look THAT in love <3

My original wifey, who so graciously shared me. I love that pink tie. 

The Crutchfield's, of course, plus G's gf Kylie. 

The above pictures were all courtesy of Cameron at C.F.Harrington Photography https://www.facebook.com/cfharringtonphotography. Her approach to photography is photojournalism, storytelling, realism. I appreciate this in our photographs, but I know (and she knows) it is not for everyone. If you want a photog who will pose you traditionally, she'll work with you, but she isn't exactly your gal. If you want someone whose pictures will truly capture the essence of the subjects and the event, she's your girl. If you want a photog who will blend into your event as if it's just one of your girlfriends snapping shots, Cameron is your girl! She will also, while photographing, politely share her professional expertise on hair and make up--for a first time bride and MoH doing hair & make up alone, such tips are incredibly valuable. 

The following photos are not from her, as you'll likely be able to tell!

Well actually these pics are all Cam's shots, but I put it together using InstaCollage. They were in the first batch of photos that she sent me. 

Shot from my brother's iPhone. Sheer terror. Immediately before Dad dragged me down the stairs. Emotionally they both gave me away, but technically only Daddy. Perhaps the most traditional element of the day?

The wedding ceremony was in the living room and there wasn't exactly an aisle to walk down, so we just exited the room and ran upstairs to K's old room, the one in which I got ready. Privately, with Ashlei officiating and no other witnesses, we did a Pagan handfasting (binding) ritual after the ceremony, to honor my eclectic beliefs. When we thought Lynn was going to officiate, the wedding would've been more openly spiritual, personal, and less Christ-churchy-fire&brimstone. So I needed this. 

These are the vows we used for the handfasting. They resonated deeper with me than our Scripture passages.

Our actual vows were:

"In the presence of God, I, _______,

Take you, ______, to be my wife/husband,

From this time onward,

To join with you and to share all that is to come,

To give and to receive, to speak and to listen,

To inspire and to respond,

And in all our life together to be loyal to you,

With all my being, my whole life long."

We also had a line added about embracing each other's family as our own and Kevin had a line about taking Blaze as his own too. 

Immediate, warm welcome to the family and the friend family from Kevin's peeps! Jason is my local brother-in-law and Michelle is Kevin's childhood friend who skyped in.

Self-shot of my rings. They are quite shiny!

A complete album can be found here: https://plus.google.com/photos/113457249280314664219/albums/5896523749809274065?authkey=CO7g49f_3dmNFA