Fall Finds

I came across some photos that were done for me for free about 2 years ago. Man, I wish I could wake up and look this good! LOL. I'm always bummin it in this hospital.

Way Seven: Accent

Ron Regular: How do I love thee? Let me count the ways.....7: Your Accent. I love thee like grandma loves her porch swing. I know I make fun and emulate the country accent. But the reality is is I love it! I love all accents. Always have. But there's always been something about a beautiful woman with one. And wouldn't you kn...ow it, I have a woman with a southern accent, who's absolutely breathtaking, and wants to only be with me. Talk about blessed. Amazingly enough, I had no clue you were that country until I met your mom. Wow. You could call it an awakening. You know what though, if this is my awakening I never want to go back to sleep.

September 30 at 12:58 am

Way Six: Dimples

Ron Regular: How do I love thee? Let me count the ways.....6: Dimples. There is nothing I think sets off your gorgeous smile like your dimples. Baby, you smile or make a poppysmic type movement with your mouth and I am putty. You have the most amazing dimples. I wish there was a way to bottle you and take you where ever I go. Your dimples are so friggin hot.

September 29 at 12:04 am

Way Five: Attitude

Ron Regular: How do I love thee? Let me count the ways.....5: Attitude. Your way of looking at things is constantly challenging me to be a better man. Your strength is undaunting. When you have your mind made up it is set in stone. Good or bad. You continually surprise me and make me proud to be your fiance. You are a fighter, a l...over, a nurturer, a comic, a mind changer, a listener, and an academic. All these things solidified by your ability to excel, improve, and create. You constantly surpass what I expect of you. I can't wait to see whats next.

September 28 at 1:10 am

Way Four: Laugh

Ron Regular: How do I love thee? Let me count the ways.....4: Your laugh. I don't even know how to explain the joy I get from hearing your laugh. I am so blessed to create the sweet sound of laughter with you daily. For some reason you think I'm funny...or a damn fool. either way your laugh makes me the happiest man in the world.... Its fitting that the other "ways" tie into this one as well. Eyes, smile, and unfortunately cf. The deep gut busting laughs are my faves. When I'm hopping around the house or bending over in front of you (that happens often and in a variety of ways LOL) my heart is full because I know you are happy. I waqnt our life to be full of laughter, joy, smiles, and happiness. The love we share is stronger because we can laugh together. I will do everything in my power to make sure you are continually laughing. It is truly the most beautiful sound to me.

September 27 at 12:28am ·

Way Three: Eyes

Ron Regular: How do I love thee? Let me count the ways....3: Your eyes. They say the eyes are windows to the soul. Its true, but I can see in my soul when I look into your gorgeous blue eyes. I see the man I need to be and want to be for you. I also see unparalleled beauty. I see joy. I see your hopes your dreams your fears yo...ur love and your strength. I love that I can see you. And with those gorgeous blue eyes, I love that you can see me....thru and thru. I love you.

September 26 at 1:29am

Way Two: Smile

Ron Regular: How do I love thee? Let me count the ways......2: Your smile. I love your smile! It is radiant and always makes me happy. The dimpling of your skin, the joy in your eyes, the curl of your mouth, and the complete gorgeousness of my Love. It's shows me your innocence and your thoughts, it increases your beauty(makes i...t hurt you are so damn fine) and is infectious. Your smile makes my heart leap, stop, and speed up all at the same time. Not healthy but very welcome.

September 25 at 1:36am

Way One: CF

Ron Regular: How do I love thee? Let me count the ways......1: This may sound odd to you, but way one is your cf. Your cf sucks, BUT it also has made you who you are. I love that it has created a strong, sensitive, and pragmatic fighter. I have always been drawn to you. It's your nature mixed with your genetics that has created the... most perfect and amazing thing in my life. I am ready for a full life perfectly imperfect with the woman engineered just for me. I still don't understand a lot but I am willing to learn about it all. Cf, you, your family, your everything.

September 24 at 1:59am

How Do I Love Thee?

Ron Regular How do I love thee? Let me count the ways.
I love thee to the depth and breadth and height
My soul can reach, when feeling out of sight
For the ends of being and ideal grace.
I love thee to the level of every day's
...Most quiet need, by sun and candle-light.
I love thee freely, as men strive for right.
I love thee purely, as they turn from praise.
I love thee with the passion put to use
In my old griefs, and with my childhood's faith.
I love thee with a love I seemed to lose
With my lost saints. I love thee with the breath,
Smiles, tears, of all my life; and, if God choose,
I shall but love thee better after death.

September 23 at 1:37am

Could it be? A functioning tummy??

As many of you may know, I was under the impression I was getting my g tube switched for a g-j tube yesterday (Monday). A phone call from Edana the day of informing me it was just a clinic visit with the surgeon kind of left me baffled. All this time (over a month!) I had been planning on this nissen and tube replacement surgery only to be told it's just a clinic visit. Wonderful. I had left a message for Edana on the office phone about starting some IV meds because I'm short of breath and my chest is getting ridiculously tight all the time. Definitely time for a clean out. Since I didn't have surgery, she reserved a bed anyway to start me up on IV's and then send me home. This is all BEFORE my clinic visit. Yes, I fell apart upon hearing I'd be admitted even though I wasn't getting the procedure done. I was most certainly in a foul mood on the ride to Duke. The visit with Dr. Perez was fairly quick, although the new information he gave us was very unexpected. With transplant, I will require a nissen (wrapping of stomach around esophagus to reduce reflux). Since they're replacing my g tube with the correct one so I can start doing nightly feeds again to gain weight, Dr. Perez thinks it will be better to just go ahead with the nissen now. When I get my new lungies, the chance of reflux will be even less since I will already have the nissen done. Dr. Perez also mentioned cutting my pylorus to allow liquids and solids to fall into my intestine. There's no point really in getting the nissen done if my stomach won't move my food into my intestine. Obviously, if I become too full, things will reflux and I'll aspirate. So the decision has been made to do all 3 surgeries at once. Nissen, pyloroplasty, and g-j tube. Big day, right? Supposedly (I use this term because the lines of communication are constantly getting crossed in here) I'm doing my final test tomorrow (solid gastric emptying) to reconfirm that my stomach empties hella slow. Docs love to schedule time consuming and painful tests unnecessarily it seems. I mean, it's practically set in stone that I'm for sure having all 3 done at the same time. Whatev. Gives them something to do. Another test to analyze.

Let's move on to something other than hospitals and cf, shall we? My outstanding fiance has posted 5 (so far) incredibly sweet things on my facebook wall. I am going to copy and paste them in order one at a time on my blog. If you don't know him, he's just marvelous. He does whatev it takes to make me crack a smile. Never have a known a man to love so openly, willingly, unconditionally as he. I'm so blessed to have this man that constantly makes an ass of himself just to get my lips to form a smile. I don't deserve him. I wish I felt half as good as he is. Why he chose and continues to choose me, I'm not sure. I love him with all I have.

Yes, I'm 25 and riding on a kiddie ride with my daughter!

Me and Miracle in the 'copter ;)

The worst part is the little sting....RIGHT.

Today is my best friend's 18th birthday. She is so special to me. Everyday I'm proud of the woman she's become and will continue to grow into. Welp, yesterday was pretty horrible. Actually I'm just referring to the part where I had a tube run through my nose and down my throat. Yeah, not fun. I went in as calm as possible. I mean, how bad can it be?? They sprayed my throat (which had me gagging BEFORE they even started feeding the tube through), swabbed my nose; both to ensure I was numb in those areas. Well I wasn't numb. At 1st the tube stung a little but it was definitely bearable. She told me to let her know when the tube was in the back of my throat. Words weren't necessary. My gag reflex and the vomit that followed was a pretty good clue. The tech would stop when I gagged, wait for me to regain control, then try to move the tube again. This was just strenuous and rather repetitive. What I needed was for her to push the tube down regardless of my body's need to clear what it thought was choking me. The other tech decided to take over and informed me to just swallow as much as I could and she was going to just keep feeding the tube further down until it ended up where it needed to be. We finally got it in place about 10 minutes later. That's 10 minutes of constant gagging and throwing up and coughing. Then it was easy. Sip water, swallow. Sip water, swallow. Repeat until it's been done 10 times. Then out came the tube. I felt so traumatized. Never in my life have I been so shaken up over a test. Honestly, I thought this would be a cake walk compared to some other stuff (like 23 tubes of blood at 5 am)...but I was sorely mistaken. Note to self: Do NOT wear make-up when doing a test like that again. My whole face was covered in black streaks and all my foundation was gone. Completely. My entire face swelled and it looked like I'd been crying for hours. I was completely wiped out after that. I had a ridiculous headache and just wanted to sleep. My mom and I left and I got groceries. Sadly, this is a task I can no longer perform alone due to my lack of air. Afterwards, I went to pick up the little from daycare and from there we met up with my friend, Kassandra and her friend Meghan, and grabbed a bite to eat. We went to Khanki. Mira was pretty happy with it this time. She stood up in my chair and would yell "I SEE IT!!" in reference to all the smoke when the chef was cooking. She was still a bit unsure of the fire, but she didn't cry. Miracle ate about half of my rice (which was a TON because I didn't get veggies. Meaning I got extra rice.) Kassandra wanted to walk around a little after, so I took Mira to the little kiddie ride area. She would walk up to one ride and act as if she wanted to get on and then say "I don't want to ride." Needless to say, it got a little frustrating. I finally was able to coax her into a helicopter WITH me. That was a funny picture. I'll try to load it. Then it was home with mommy, movie time, then bedtime. Twice she fell out of bed and just had a fairly restless night's sleep in general. I was absolutely exhausted today. I spent the day resting as much as possible. My lung function seems to have gone down. My chest is getting tighter and tighter. I'm almost positive it's time for antibiotics again. Monday I'm getting my g tube replaced with a g-j tube (finally). It requires an overnight stay and more pain in the tummy area. Yippy. I just keep reminding myself one day it will all seem small compared to the amazing life I'll live after my new lungs. It will be like being reborn. I'll think of things in relation to when I got transplant, not in relation to my actual birth. What a marvelous time that will be! Love to all.

Almost!

I'm on my last station at rehab. The darn NuStep. I hate this machine. So monotonous. 6 minutes! I met someone named Melanie with cf who's closer in age than most other people here. Most people here have pulmonary fibrosis or emphysema (sp?) or something like that. A lot of seniors. Several youngins. Melanie's a sweetheart. Then there's Jessica...really quiet and keeps to herself. I've just recently learned her name. Good news. One of the women here was listed for transplant on Friday! Wonder when she'll get the "call"? I'm super shocked I stayed. Every fiber of my being wanted to walk right out the door about every 3.8 seconds. I didn't though. If I leave, how badly do I really want transplant? Not badly enough. I can't give up. I have a daughter to raise. I have friends to support and family to love. 2 minutes. There's a guy here fresh outta transplant and he looks awesome. Moves pretty slow, but he can breathe, lol. I can't wait for that to be me. No more tubes coming out of random parts of my body. I can wear whatev and feel awesome. No weird bulges under my shirt. When I tape up my feeding tube, it looks like I have a smiley face under my shirt, haha. That's nice and all...but the only smile I want to show off is the one on my face ;) DONE. Dueces ya'll.

Rehab

So I'm at rehab right now waiting to be checked in. I really don't want to be here today. Really. The chicken plate sale Saturday went absolutely phenominal. We sold out of all 400 plates within 3 hours!! Raised over $3000 ;) How amazing that was. Ron and I went to Lungapalooza yesterday which was just pretty boring. Next time I think I'll be sure I can do the actual walk before going. I had some stuff come up last night (completely unrelated to cf) that is making me question my relationship. I just don't know this is the right thing. I'm at a loss and not sure what to do. My mom is picking up Mira and she's spending the night with her tonight so when I leave rehab it's straight home to the couch for me. I've been so exhausted lately. The work my body's doing for my lungs right now is wearing me out. Put that on top of rehab, busy weekends, and just small everyday stuff and I'm constantly fatigued. This too shall pass. One day I'll have new lungies and will be running circles around everyone. Just a little longer. Just another day. Just another hour. Just another minute. Just another second. When I feel the thought of one more day is unbearable, that's how I break it down. I can obviously survive one more second. Then I go from there. Maybe I'll write more later. Maybe I'll be sleeping. Who knows?

Eva's Story

I decided to let the emotion in tonight. Reread Eva's story. I've been crying for about an hour. Wow. God help me...

Breathe It In

I know we aren't supposed to question things but I am right now. WHY?? Why her? My fiance's bestest has health problems and they aren't minor. She is such a marvelous person and so caring. Seems to me like it's always the people that deserve to live the most that have so many options taken away. Poked and prodded, being a guinea pig, numerous medical tests and still being partially clueless. WTF?! Sometimes, life just pisses me off. So many people are so ungrateful for the simple things. I won't delve into what these "simple" things are, but I'm sure you can figure out what I mean. The way I try to see it is: Most people don't have a terminal illness. Meaning, they don't treasure every little moment. I have been blessed to experience what it's like to know how a big of a deal it is to see my babygirl smile. To have a man love me and all that comes with me. To have parents that are always on my side. Having friends that know what to do/say when things get rough. A family that will always pull together if needed. The sun on my face. Wind blowing through my hair. Making snow angels. Dancing in the rain. These things I cherish. All the others like me do as well. At the end of the day, Kat and I have a lot in common. I can come to her upset and she for the most part knows what I mean. She gets so much of what I'm experiencing. Just the unfairness of it all. We're beginning to lean on one another and I'm so thankful for her. No one likes to have a normal life choice just ripped from them due to an illness. We fight. That's all we can do. I fight for me. I fight for her. I fight for us all. Don't take one single moment, no matter how miniscule it may seem, for granted. We don't.

Longbranch Event II

Longbranch Event I

Stupid technology

Grrrr....I'm throwing in the towel on the collage business for now. Getting slightly frustrated. The Longbranch had a decent turnout for our fund raiser. We raised quite a bit of money and everyone had a great time. Last weekend was a yard sale and that was absolutely incredible!! This weekend is the chicken plate sale.....right around the corner. Whew, I know everyone's ready for a break. Rehab has been going fine since I've gone back. Stayed out for a while because I just feel such overwhelming emotions when I'm listening to the lectures. The working out part isn't too bad. I know the doctors just want us to be very educated on everything that goes on but dang....it freaks me out tremendously. I was able to keep Mira overnight on Tuesday! My mom came over and we all had dinner together. It was great family time and the little was loving her very own room. She wanted to stay upstairs, lol. Sorry I can't write much more than that right now because I have to go pick her up from daycare. Love you all!!

Collages

Oh jeepers....please bare with me as I try to figure out how to do this collage thing....