Monday, September 27, 2010

My apologies to the McGriddle, sort of.

They say that your taste buds changes every 7 years. That's what they say anyway. A couple of years ago I tried a McGriddle for the first time.....I was disgusted. Its was soggy, it was greasy, it took only one bite for me to write them off for a lifetime, or so I thought.

Its been a rough week for a good friend of mine who is stuck in the hole. His hemoptysis has gotten the upper hand temporarily, so he is on a hiatus until his recovery from his bronch and embolization. *fingers crossed* that he is back soon to tell us what's up....You can visit UnknownCystic by clicking here. Make sure to leave some well wishes and maybe an off kilter comment or two. I think he likes the abuse ;)

UC is a big fan of the McGriddle, and he's been on my mind a lot lately. So early in the week when we made a stop for breakfast at Mickey D's, I sat in the drive through pondering my own food choice. I am not a big fan of breakfast food at all. I don't do pancakes, not a big fan of sausage. Breakfast just never was my thing. Plus, I have this thing about grease....I don't really like it too much.

But with UC on my mind, and his never ending praise of the McGriddle, I ordered one. I did this trusting my own instinct that I wouldn't like it and with a smirk on my face knowing that I would have more fuel to harass UC after his next post praising the breakfast treat. I say next because one is coming, maybe not today, maybe not tomorrow, but one day....he loves them that much :)

So as we drove away and food and enzymes were passed to Natalie, I stared into the bag. "So this is the what all the fuss is about huh?" , I thought to myself. It looked rather harmless. It didn't smell too hot though, I think it was the weird folded egg part. Eggs just don't do that naturally, ya know? :)

So I started to eat the little sandwich....I was confused. It wasn't soggy, it wasn't greasy, it was salty, sweet, crunchy soft, it was just really really good. Really good. I was excited and disheartened simultaneously. My plan was ruined.

So as badly as I wanted to be able to harass UC, I cannot. I would have a bacon, egg, and cheese McGriddle any day of the week. It probably wouldn't even have to be breakfast time, they're that much fun to eat.

After my 3rd trip to McDonald's for my new breakfast treat (in the past 7 days), I returned home this morning and looked up the nutrition facts....OUCH!!!!

Alas, I am pancreatic sufficient and to practice long term McGriddle eating would be devastating to my girlish figure, not to mention the whole increased risk for CAD and HTN. Just sayin' :)

However, for all of you CF moms and CF peeps, if you're looking for a kick start to your day at over 420 kcal, 18 gm of fat, 1110 mg of sodium.....this is definitely a good way to go. The cool part is that even after all of that, its so tiny, that it barely fills you up, so why not go for two? :)

So my plan has changed. Since I cant harass UC about anything, and I cant eat McGriddles without dire consequences and casualties in my wardrobe, I have decided that I am going to try to get Natalie to like them. She's a picky eater, but I'm confident that she can be won over.

So, my apologies to the McGriddle, I may just need you around afterall. Sort of.

much love ~j

Sunday, September 19, 2010


Just a random post.

I am a nurse.

I love chocolate.

I hate medicine. I believe in the power of the human body to correct itself. This statement is void if you have an actual functioning problem (as in something just doesn't work right, is broken, damaged or deformed) This, of course, only works if you commit yourself to a healthy lifestyle....I don't even do this, but I believe it works. Ive seen it.

I think that "Deep Thoughts by Jack Handy" on SNL was one of the best recurring skits of all time, aside from Stuart Smalley.

These arent the originals, they're hard to find, go figure.

I love chocolate. I think its the best escape under the sun. Beaches make me self conscious and sand makes me itch. Just give me a chocolate bar and a front porch with a rocking chair and I'm good, really good.

People often mistake me for stuck up. Im actually quite self-conscious and prefer small intimate groups to large social settings.

I love pictures. However, I am terrible at getting them printed. If my hard drive ever crashes, my childrens entire childhoods will be lost.

My secret dream job is to be a photographer.

I think that the ultimate "ha! in your face!" moment for parents is when their children ask to come back home.

Chocolate, did i mention that I like chocolate?

I don't go to church, but i listen to the sermons on cd. Sometimes I wonder if thats the same as not reading a book and waiting for the movie to come out.

Anyways, just sayin' much love ~j

Friday, September 17, 2010

Hiding out and ignorant ERs.......

I'm not going to even try to lie. Ive been hiding, making excuses, avoiding any real thought or logical reasoning for quite a while. My posts, however few and far between, have remained superficial for a reason. There are people reading this that I just don't want to open up to. Isn't it ironic that those who are closest to us, are the ones that we keep the most from.

I would share nearly anything with some of my readers whom I have never met, yet hesitate....leave out certain things with my family and my friends....backwards much? I think not.

Everyone has ideas of who they think you are. When things go wrong, go right, when things just don't add up.....Do you really want to seek advice from the people who already think you're a bitch, think you're retarded, think that you are, by far, the family f&%k up? I think not. I just don't want to hear..."well Juli, you know, we told you so." Or "well, that's just the way things go." Or worse yet, not hear anything and let another family member come back to you and say "hey, you might want to lay low, they re talking about you again."

I've made a huge mistake. HUGE, giant, gargantuan, massive mistake. How to fix it? I don't know. Some of the most traumatically horrible things that have happened in my life have been a result of me trying to "fix" my mistakes.....I don't think I'm going to fix this one, just going to let it happen. No sugarcoating, just let it go ahead and blow up and see where the pieces fall.

All of this lies beneath what is really going on. Natalie. Natalie is always going on. She is a never ending pile of worry and fear.

We had our 3 month checkup yesterday. O2 sats are still down, cough, no fever, just general what do we get? 21 days of antibiotics....yeah, you heard me 21 days. That's nearly a month! aaaaannnnnd its Omnicef. She hates this stuff with a passion. She gags, she runs, anything she can do to get away from the white medicine, she does....its going to be a long 21 days.

Treatment frequencies are increased, mls have been increased, its too much, too fast. I'm trying to absorb it all and figure out what it means, while trying to carry it out simultaneously. What does it mean? Nothing. Everything. It means she is sick. CF sick. Not I have a cold, I have bronchitis, I have strep, I have a sinus infection, nor an ear infection...there is a difference, she is CF sick and that scares me.

To top it off, she decided to jump off of the sofa last night. She landed directly on her right side, her rib cage began to bruise immediately. I just knew she had broken something. So, after a day in New Orleans with the CF team. We spent the night at the hospital with the other late night ER peeps. In general, it could have been worse. She entertained us, and the waiting room. It wasn't a total loss. She's going to be a star one day. She loves the attention, so animated, so full of life...even when she is sick, even when it hurts to cough, even with bruised ribs, she is larger than life. My tiny ball of light and energy, waiting to give me a heart attack.

On the flip side, she may as well have been a rat in a cage to the ER doc. We went to a new hospital that we don't usually go to because it was closer, apparently they don't see much CF. The nurses, only concerned about her cough, the MD's...they too, only concerned about her cough....even the xray tech, concerned about her cough. After correcting each of them that we were not there for her cough, she was already being treated for that, that we were actually there because she fell, the same confused "seriously?" look on their face....."...But she has CF, and a cough..." the ER doc replies ignorantly...."Yes, she does, and a 21 day course of antibiotics ahead of her....I just need to know if I can do her vest treatments without puncturing a lung, that's all..." She stutters to find words, I had to explain to her what a "vest treatment" was after she asked what kind of nebulizer treatment that was...yeah, it was awesome. So after 5 hours hanging out in the ER, we got the go ahead to go home, her xrays were clear as far as broken bones, but her chest xray wasn't too hot. Guess they wanted to throw that in there for the fun of it, perhaps for their amusement, hopefully for their education. And yes, there is a difference between taking an xray of the right side of her rib cage and a chest xray....

Soooo here I sit. Ive picked up a 2nd job. I don't have much free time. I do apologize for the abrupt exit. I'm trying to get my brain back. It seems to have gone on vacation. wish I could have gone too. much love ~j

Wednesday, September 1, 2010

That's one HUGE leap forward....and maybe a stumbling block or two....

Life goes on, evens out, progresses, changes....always. Things keep going, and going, and going. "..Life's like an hourglass glued to the table..."

We've reached a major milestone in CF life....Natalie is swallowing her enzymes whole. Yay! She learned this one totally by accident. She was out with my sister and just happened to not have any applesauce, so her Aunt Kayla coaxed her into it and there's no stopping now. She's so proud of herself every time she takes them and Mommy is proud too. She's just growing up so fast, so fast.

On the flip side, she woke up yesterday morning with her eye swollen shut. I took her to the eye doctor (her regular pediatrician preferred it that way) The swelling seems to be an allergic reaction to an insect bite, but they did an eye exam anyway....and she failed it....miserably.

I had grown accustomed to clumsy children. I was clumsy, I walked into doors in grade school. Ive gotten more than one call from the school for Caitlin walking into a pole or a door. (Its okay to laugh, its definitely funny)So when Natalie started walking into doors and hitting the corner of the wall when trying to walk around it, I never thought twice. But as she was sitting in my lap, my heart kinda sank a little when she looked at the nurse and said "ummm that's a little too far away..." and I could see it perfectly. I was hoping that it was a fluke, so was the nurse, so she backed up the slides and showed it to her again. The pictures popped up on the screen and once again, "ummm that's a little too far away" *sigh* So next week we will be repeating the eye exam. The doctor prefers that both eyes are healthy before we jump to any conclusions. I agree, but I cant help but worry.

On another note, we may be getting a house of our own soon. My sister has done more than her share in letting us hang out for a while, but I am hoping to be moving on very shortly. Just waiting on a phone call at this point, so we shall see....

Love to you all. ~j