Wednesday, February 27, 2013

Pasta Making & Impromptu Game Night


In the midst of all this doing IV's business I was invited to a ravioli making class at a store in the mall. I had hoped to be done with IV's but this is an activity I could do with the PICC regardless. Let me just say that watching the instructor make a ravioli make's it appear sooo easy. When it was my turn to fill and put the ravioli together, the attempt was slightly less than disasterous. I struggled to pinch the ravioli together, not so easy. If the dough is too dry you must put water or egg wash on it in addition to getting as much air out of the center as you close it up. The fun part was cutting the edges to finish it off, thus making it look like a ravioli.

I am glad I went. The biggest reason is so that I could see just what the dough should look, feel, and taste like. For this class, the dough was already made ahead of time. But we got to "play" with a piece and it should be the consistency of play-do. During the class we were able to sample two ravioli's that were made; meat filled and ricotta filled. Yummy!

I can't wait to begin making pasta here at home. I have wanted to try this for a long time. This weekend I'll make a go at it. I have all the attachments to my mixer for rolling out the dough, cutting spaghetti and fettuccine noodles. I just hope I can get the dough right!


In the beginning of January B and I with another couple joined a bowling league. It's so fun. We bowl two games every Sunday night for 15 weeks. It's a nice ending to a weekend. The league isn't' super competitive, thank goodness for the girl who bowls a 75 average! It's open to all ages, we have a few kiddos, who are so outgoing.

Well, having been house bound for a few weeks with the exception of doctors appointments, grocery store and getting gas I have been missing out on socializing and bowling. I couldn't bowl with the PICC line in due to the swinging motion and weight of the ball.

This past Sunday the couple we bowl with came over of dinner. We spontaneously decided to play a board game. I haven't gotten down on the floor with a board game all spread out in a very long time. It was fun. We even drank root beer and cream soda. Sort of nostalgic.

We played Pandemic. It's the type of game that requires working together to cure diseases before they become outbreaks and then epidemics. It's strategic. We enjoyed it so much so that we've decided on a game night every once in awhile.

If your in the neighborhood stop by for some homemade pasta and game!

Saturday, February 23, 2013

Nutria or Neutropenia?!

It's been nearly three weeks of IV's and no real sign of improvement. In fact, at my follow-up appointment last Tuesday my PFT's had dropped slightly, that, coupled with having low energy levels led to the decision of going one more week of IV's. Fine. Ok. Lets get this down.

Come Wednesday I was feeling even worse. Fevers with bouts of extreme sweating. Like soaking a t-shirt just sitting down along with my reoccurring joint pain this time concentrated in the ankles. After contacting my fabulous CF Team, a rush blood draw followed by a trip to urgent care, it was discovered that I have Neutropenia.

Sort of sounds like a rodent, Oregon has a Nutria. Cute Beaver like things! 

But, truly Neutropenia is pretty serious. It's believed that my onset of Neutropenia is from the IV meds. Therefore, we stopped those immediately and the PICC was ordered to be pulled, since PICC's have a high blood infection rate. The main issue with Neutropenia is that it suppresses your immune system because of the extremely low white blood cell counts. This leaves the patient very vulnerable to bacterial and fungal infections. Just what I need. Where's the cute Nutria? 

I tell you I'm not a simple case. Just when we think things might be smoothing out we hit a large Nutria.

On the upside, I can shower. Oh, yes. A shower. It was like the fountain of youth pouring down on my body. Taking a bath with your left arm wrapped-to-the-nines in plastic wrap raised as far in the air as I could muster was not doing it. 

Meanwhile, I'm in lock down mode to ward off infection. Doing blood work tomorrow to see if any white blood cells have rejuvinated and resting.

So, next time you hear Neutropenia don't mistake it for a beaver-like rodent called the Nutria!!


Thursday, February 21, 2013

The Thing is...

The longer I breathe, talk, walk and participate in this life I find myself in different places, at different junctures, breaking and making assumptions. The one thing that I keep coming back to is this idea or belief that I was chosen to live in this era with this disease. To be clear I do identify as a Christian.

Just when I find myself in a deep valley the sun shines thru a plateau. Just when I feel like I'm breathing under water a pocket of air envelopes me. Just when I feel that the situation is hopeless, hope smiles back at me. I believe it's some what human nature to have such emotions, its part of the journey. You can't understand what its like to be hopeful if you've never been hopeless.

Over the past few months I've been on a roller coaster with my health. I have so desperately wanted off.  The thing is I have total control as to whether I stay on this roller coaster or not. Sure, I still have to deal with my health, be diligent and take care of myself, but it doesn't have to control anything beyond that. It doesn't have to be a looping track, over and over at high speeds leaving me dizzy.

God knows my journey, he plotted it for heavens sake. I believe and sort of always have that my CF is more about God than it is about me. He wants to use it to show is grace, mercy and love to the world. Does this knowledge make it easier when I am in despair. Nope, not really, there are times of great sorrow in this house. It does make me draw closer to God though. God never said it would be easy but that it would be worth it.

I want my life to be worth it.

I want to look back and say that I did rather than I couldn't because _____.

So, the thing is....

step out in faith
be a doer not a can't-er
get off the roller coaster and put my tennis shoes on and start walking
follow my heart
speak edifyingly of others
loves those who hurt
just do
remember that love does

Making assumptions about our lives can leave us stuck. It can dictate where we go and how we do it. Leave assumptions where they belong, on the ground. Because more often than not your assumptions will betray you, leaving you feeling foolish. I have assumed that 37 is my golden number. The average life-expancty but the closer I get to 37 the more I feel I've assumed too little of myself and my God.

I think I'll attempt to take each day for what it is; a new opportunity. Instead of assuming what each day is.


Friday, February 15, 2013


I've been doing alot of thinking about community and what it really means to me and how I'm impacted by having a community. Being apart of a community is a basic human longing, I mean just look at the explosion of internet communities. We all long to be apart of something, to have support systems, to build relationships upon common interests and to simply belong. Often times it's where we find our passion for life and pursue it. It's where we learn new things and teach new ideas or point of views. It's where we find hope for the new day.

I've learned that a community doesn't have to be a anything elaborate, it could just be you and a friend. I, like most, belong to a few communities; friends, family, church, book club, Cystic Fibrosis community and a few other super small ones. I love having so many. Each community allows me to bond with a wide variety of folks that I probably wouldn't otherwise have the opportunity to do so.

Being sick a lot means that sometimes I can't function actively within many of my communities. I miss out. I miss them. It's also humbling to know that these communities reach out. If I need anything my community is ready and eager to help. My biggest problem is my ego. I have a hard time admitting that I need help or could use the assistance. But they just know and come armed with what they can give. Some bring a smile, some bring a book, some bring food, some just come and I couldn't feel more blessed.

This go around of IV's my fabulous book club has offered to help with meals. I am here to tell you, agreeing to this assistance, was like jumping from the highest rock into the waters below. I feared it. I was anxious about it. Now that it has commenced I am soooo thankful for it. It's been a huge help to my hubby and I. I just love catching up those who come to drop of a meal, it gives me relief knowing one task is taken care of.

I think when we open ourselves up to our community or just join one we quickly find how greatly enriched our lifes become and so are theirs. At this time in my life I thrive on building these relationships and look forward to building my communities. Making them strong and impactful all while enjoying our common thread.


Thursday, February 14, 2013


I find it sort of off putting that we have one day each year that we're to show our love, typically romantic love to our husbands, wives, partners, boyfriends, and girlfriends. It's all soooo commercialized.

Many years ago I asked B to not buy flowers or cards or candy. The flowers die leaving me sad, the cards are a bunch of fluff that I'd prefer hear him say rather than use the pre-written text and I'm not particularly a sweets kinda gal.

I want love every day. I wanted us to show our love for each other every single day. Call me selfish. Call me high maintenance. Call me delusional.

I want the lazy foot massage as we unwind from the day, I want a huge that lingers a bit longer, I want to snuggle up in a warm blanket, I want to catch him starring at me, I want the kinda of love that does, whether it be he surprises me with making dinner, folding the laundry, randomly unloads the dishwasher, etc. Not some grand gesture that is more about how much money he spent but how much he cares for me.

I can honestly say, I have this love. Neither of us are perfect and not every day is blissfully lovey-dovey  but there are acts of love towards each other every day.

So, this year we will spend this day as we have for nearly 9 years. A pizza, a salad and each other doing what we do every day; loving one another!

I hope you have love or find love. It's truly transforming, magical and wonderful.

Happy Valentines Day!


Saturday, February 2, 2013

Mo'orea, Sharks, Dolphins, Stingray and more....

Last time I left you with a some what gloomy post so to make up for it I wanted to tell you that my life is amazing despite a few rough patches. In November, B and I went on the vacation of our dreams. Many people helped make this trip happen, from the doctors who rescued me with medication right before I boarded the plane to those who helped financially.

We've all seen the picquese scene of turquoise blue ocean water with fancy little huts extended out into the ocean. Well, thats just right where we found ourselves at on the morning of November 2nd. I had an entire suit case full of meds but I vowed that I would find peace on this trip. Peace with the craziness of a life with a terminal illness. I think I found it.... the trick is to use my muscle memory when the seas get rough again!


Mo'orea, French Polynesia

The beauty is beyond real. The 82 degree average temperature warmed my weary bones. The sounds of the ocean lapping against the shore placed me in a state of absolute calmness.

Wishing I could transport myself back to this heavenly hammock! 

We took the plunge as soon as they took us to our over-water bungalow. The water was SCREAMING my name.

We lived in and on the water for 7 days! The ocean is sort of magical. Its calming, yet invigorating. My lungs thrived on the salty air. I began to feel good again even with having been placed on antibiotics just before leaving Oregon.

Just look at this sunset. I don't know how your spirits can't be uplifted with a view like this. I sort of had a huge revelation watching this sunset. God allows all life to begin and he beautifully takes it. When my time comes I hope those who love me will have this sunset in their vision. A sign of a life wonderfully lived in full color.

Yes, ladies and gents! I ROCKED the g-tube. I made that decision along time ago, I am beautifully imperfect. The fact that I have a few scares and the toobie are not gonna slow me down. Everyone on this planet is insecure about something, so let's get over it. Let's see each other for who we are, what our hearts are about and not what our physical being appears like. Plus beauty is in the eye of the beholder. My hubby loves me and my imperfect body!

Sharks and Stingray, Oh My!! I have to admit I was a bit terrified during the boat ride out to visit with these awesome sea creatures. B was beyond excited. Swimming with sharks is a bucket list item for him. The bad part, he now wants to have a close encounter with a Great White. Lord help me!!

 For anyone wondering, B is a huge U of O Ducks fan!! In case this photo left you lost.

My dream since I can remember is getting close and personal with a bottle nose dolphin. I even had my room painted ocean blue with boarder wall paper of dolphins. Its a known fact that I love dolphins. A huge thank you to those who made this possible, you know who you are!

(Goodness, I love this man!)

In the end, you were able to let go. Let go of the pile of bills awaiting money that may never come, the laundry that's in piles, the emails and phone calls that probably won't be returned, the looming threat of early death, the possibility that having a family might not be our path, all the stress that this life places upon us. We got back to a place of thankfulness, silliness, appreciation, love, adventure, and each other.

Until next time! But until then life is a blessing. This space that I call life is truly amazing. God is forever good.

A big THANK YOU to my in-laws, my mom, and my hubby for working his fingers to the bone so that we could have this experience. I love you all!!

As a side note, the pink top and straw hat that I'm wearing is because the antibiotics that I was on made me sensitive to the sun. I didn't want to burn so I found this top and it helped prevent what could have been a nasty sun burn. Plus that hat is a very cute accessory for other outfits!!

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