Thursday, May 31, 2012

Thankful Thursday: Ice Cream and Long Days

The past few weeks have had me spinning; going to and from with a full social calendar. This time of year I am spinning my wheels because the hubs begins his very long work days. As summer is their busiest season, the time of year that generates enough profits to get the small family owned business thru the winter when all things landscape related seem to halt. He works 6am to 7pm. Leaving no time to help out around the house; nor would I ask. The long days keep me motivated to get things done. My take on it is this, if he is busting his hump (literally, physically he looses approx. 10-15lbs every summer) then I can "lady-up" and make sure this household runs smoothly. I would be mortified if he came home after such long grueling hours of braving the weather conditions, managing people, attempting to meet strict deadlines, and at times literally picking up a shovel to move earth all day to find our home unorganized, disheveled and me being lazy not carrying my weight when he needs it most.

But the long days alone make me miss him. Anyone who is married will understand that some alone time is wonderful, refreshing and invigorating but too much alone causes you to miss them, to want to shower each other with love and words of encourage to make it thru the next long day, thus appreciating one another. I have been at this heightened routine for almost 3 weeks and I find myself watching the clock with eager anticipation between 7-7:30pm. I am eager to see him. To hear his voice. To attend to him and let him put his feet up for 30 minutes while he eats dinner. To lay in bed at 8pm while I run my feeding tube snuggled up to him and watch something via our little laptop.

Distance or time makes the heart grow founder. This I truly believe; if the love is genuine.

Since I am staying on my feet and keeping up on all my "chores" and duties around the house along with taking on his duties I am exhausted. Tonight's dinner for me was a HUGE bowl of ice cream. And I am forever grateful for each smooth, cool, sugary bit. The sugar high might push me to get his lunch ready for  the next day tonight rather than at 5am tomorrow morning.

I am thankful for the small things, for all the small things make up how great my life is.


Saturday, May 26, 2012

A Week in Reverse; Not Saying 'No' Worked

This past week has been an exciting whirlwind. One of my biggest weaknesses is not knowing when to say "no." Generally, I get by but sometimes I over-book myself causing much unneeded stress. This week I did over-book but by Friday evening I was invigorated by all I had done. Yes, I was stressed just thinking about each day's to-do's, errands, meet & greets, volunteer commitments, etc...

I have been asked; why does having so much "good" stuff to do stress me out. Here is my answer. Each day brings different issues when dealing with a chronic illness. I never know if I'll have tummy issues and need to be close to a bathroom. I never know if my joints will ache causing me to move slowly or just plain out leaving me immobile. I never know if I'll wake up with chest pains, shortness of breath or some other aliment.

So, when making plans I always become nervous about whether or not I'll be able to keep my commitments. I have lost friends because they simply couldn't understand that as much as I want to do something, there are times when I can't even though I have committed.

Last Saturday I participated in the Oregon Cystic Fibrosis Foundation's Great Strides walk AND then I raced home to get ready to volunteer at the annual Ethiopia Orphan Relief's Lights of Hope auction. Both events people where depending on me. I couldn't cancel. These events benefited people/children who need it. It's events like this that I make up my mind to suck it up and power thru whatever pain/issue I maybe be experiencing. Each event was amazing. Meeting new people, hugging and catching up with old friends and making a difference in the lives of those who need and deserve it. This is why I power thru.

Come Sunday morning my body hurt. I had done too much. But my commitments were not over with. I thought long and hard about canceling Sunday's engagement. I am so glad I didn't. The hubs and I needed a calm date together and we got it free as a gift. How could I pass spending time with him?!

The rest of the week came and went. Each day having an errand to do, appointment of some sort to attend and just good old life happenings. I had a lunch date with a friend whom I haven't seen in months. Chatted with a friend who lives a few hours away after weeks of playing phone tag.

ALL good things. This morning I feel full. I feel sleepy but invigorated. I feel like not saying "no" worked this week. Please don't be offended if next week I use "no" a time or two.

Thanks for letting me have a small part in something. Thanks for excusing me when I simply can't.


Thursday, May 17, 2012

Thankful Thursday: Yummy High Fat Treats

It's Thankful Thursday! I don't know if I can top this weeks good news. Although I do have something that I am thankful for.....Nuttella

This tasty spread is just the thing I like when I can't sleep because I feel hungry. It might sound weird that I feel hungry at night, even with a feeding tube, but I does happen. I am thankful that I can reach in the cupboard to pull out the Nuttella and lather it on almost anything. Here are a few things I enjoy it on:

  • toasted waffles
  • saltines
  • pretzels
  • fresh fruit
  • bread
  • toast
  • plan, scooped with spoon
I love it so much that I buy it from Costco. This stuff is magical. I bake with it and have made some super duper yummy things. It's great if you need something that is high in calories yet good for you.


Wednesday, May 16, 2012

"Nearly Normal", ummm....what?

Me: "Say what?"

CF Doctor: "Your lung function is stable, and nearly normal."

Me: What?!

CF Doctor: "whatever you've been doing, even with the ebbs and flows of compliance, has been working for you."

This is a snippet of my conversation at yesterday's CF Clinic appointment after doing my PFT's. I am blown away. In 40 days I will be 30 years old with CF and quite possibly the healthiest I have ever been. My stats on 5/15/12:

Blood Pressure: 114/70
Pulse: 70
Weight: 123 lbs
BMI: 20.87 (I have worked SO hard for this!! Yay, g-tube)
FEV1: 74% (80-100+ is considered normal; I ranked 74% of woman my age, height and whom are healthy)

I can tell you this, I will not stop at "nearly normal" I will continue to push the boundaries of my health. I will not rest until I am "normal" until CF is no longer. Beyond thrilled is an understatement.

Me, nearly normal!!


Sunday, May 13, 2012

Mother's Day: Bitter Sweet

Mother's day is a day filled with mixed emotions.

Love and appreciation for my mother, who sacrificed so much for my brother and I. For all the sleeplessness nights she spend by my hospital bed, hoping, wishing and praying to be able to walk out the hospital lobby with me in-tow. For all times she would find away to afford to take us to my favorite restaurant, Red Lobster. For all the times she carted us from sports practice, to/from school, to a friends house for a sleep-over, for letting my best friend (still to this day!) stay at our house whenever. For the patience to deal with me as a rebellious teenager. For all the small some what unnoticeable things she did for us I can now see where huge sacrifices or nearly required an act of God to pull off.

I think of my best friend who lost her mother a few years back and how difficult and lonely today must be for her. How she must be longing to hug and kiss her mother. To tell her mother how much she appreciated all the things she did for her. I am sure my friend is wondering what advice her mother would give her to help her with this stage of her life. I am sure her heart aches today.

As my 30th birthday fast approaches and 6  years of marriage is within sight, I feel as though there is a hole in my heart. Someone is missing. Our home is too quiet. There are no children's books haphazardly laying about. There are no little shoes mixed in with big shoes by the back door. There are no signs of this someone. My heart aches for them. Will I ever meet them in this lifetime. Will Mother's day ever be applicable to me?

So, bitter sweet is Mother's day.


Thursday, May 10, 2012

Thankful Thursday: May Flowers

Finding one thing to be thankful for is actually sort of difficult. Life is too full and abundant to be thankful for just one thing. However, today, or this entire week rather, my eyes have been drawn to all the gorgeous flowers that are beginning to bloom. As I drive into town I pass a man rototilling his little patch of dirt for what appears to be the start of a vegetable garden, while his wife is preparing baskets to hang from their porch. I just love the idea of taking something ordinary, a patch of dirt, and edifying it with flowers or plants. It reminds of the old mentor of life that with death (winter) comes life (spring).

Many of you know that my hubby works in the Landscape Design arena and I used to wonder how in the world the hubs enjoyed what he does for a living but this time each year I am reminded. He, just like the couple above, take a plain piece of land and give it life. He loves it. He loves seeing the transformation. He loves working outside with his hands.

I love that his profession affords us all sorts of "leftovers", which generally end up in one of my flower pots. The first "leftover" this season is this beautiful orange Lilly. She came to us with no blooms and has just recently shown herself.

Today, I am thankful for all the stunning May flowers that are blooming all over the place. Fills my day with color and rejuvenates my mood.


Tuesday, May 8, 2012

They Think I Have Something to Say....

In honor of National CF Awareness Month, these wonderful folks took time to gather some information about Cystic Fibrosis. They even thought I had something worthy of note to say. Check it out.....

WEGO Health Blog: Roundtable on Cystic Fibrosis


Friday, May 4, 2012

Let's Find a Cure...Please

This year I am joining Portland Timbers goalie Joe Bendik in not only bringing awareness to the Rose City but also to help fund a cure thru research. Joe's nephew Gavin has CF, he inspired by Gavin, he just like all who love Gavin want him to have a future free from this disease.

I am a 29 year old CF'er who is inspired by those around me everyday. I have friends who are doing amazing work to make this world a better place. I want so desperately to be apart of that change but for many reason's I can't. CF holds me back. Holds me in place where I must fight for every breathe. 

In my lifetime, I have seen huge leaps forward in research. That research then produced medications that is not only pushing the life expectancy but the quality of life we have. Research comes with a very large price tag. 

Please help myself and Gavin and the thousands just like us have a future. A future where our ambitions can be realized. A future where we can travel to far away lands giving aid to those who need it. A future where we can play soccer. A future where any thing we conjure up in our hearts and minds could have a possibility.


Thursday, May 3, 2012

Thankful Thursday: IV drugs

After today's events I am so thankful for IV drugs. The kind of drugs that can make the horrid feeling of wanting/needing to vomit none stop simply melt away and a headache that was making every attempt to split my head in half, so subside within hours.

Since around Sunday I have had a nearly constant headache. I didn't put much thought into it because living in PacNW during this time of year many experience allergies and I honestly thought that I must have a slight touch of it. As Monday came and went the headache persisted and I continue to attribute it to allergies or stress.

However, this morning I awoke feeling nauseated and the headache had gotten almost intolerable. I pushed on even after vomiting and went on with my daily to-do's. Around noon-ish my vision began to blur causing me to begin to freak out. This is highly unusual.

Being that almost everything that ales me is related to CF, I called my CF team. I was instructed to report immediately. Once in the clinic my doctor diagnosed it as a migraine and probable dehydration from the vomiting. So, not in fact CF related. Yay! Just relatively normal non-CF stuff, for once.

He sent me over to nurse treatment in order to start IV's to help alleviate my nausea, migraine and dehydration. So, thankful for these amazingly wonderful drugs. The actual IV process not so much but it's a walk in the park to the thousands of other procedures I've endured.

Let's hope these magical drugs do the trick and ward off migraines forever. Thankful. Thankful.


Wednesday, May 2, 2012

Sunday Goodness

I just love Sunday's. The hubs and I generally spend the day together doing errands for the upcoming week or doing something fun, like golfing. But this past Sunday we decided to go to the movies with our movie tickets that we got as a gift and to make dinner together. The hubs is actually a really good cook. He does things WAY differently than I do in the kitchen and I am learning patience with that process but amongst the chaos he is able to bring amazing dishes to the table.

Homemade Mac N' Cheese with Habenero Sausage in the works:

I failed to take pictures of the finished product but I can tell you it was goooood!! I even ate leftovers on Monday.

Tuesday, May 1, 2012

Two Birds with One Stone

Saturday I was invited to run another 5K in support of Child Abuse Prevention that was being hosted by a number of different State organizations. I was hesitant simply because I didn't feel prepared to run with a group whom I had never run with. They are a great group ladies who are doing inspiring things but running with anyone but my hubby and close family is intimating for me. With the hubs encouragement I decided to join them and do my best.

After the run I was thinking that not only am I keeping my lungs and body as healthy as possible I am also helping bring awareness for some vulnerable children. Thus as the saying goes "killing two birds with one stone." The ladies where amazing to run with and the coffee and girl time afterwards was such a nice little treat.

Here are my results, not too shabby for feeling unprepared:

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