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Sunday, February 27, 2011

Yesterday we ran errands--- which felt amazing -- ale sang el shaddai as we meandered around target and there was such a peaceful happiness.

I organized all my new protein and sodium staples ( muscle milk light and v-8-- not to be consumed in tandem-- ) as well as packing the freezer with wild salmon and tilapia ( which I have no idea how to cook)-- I love organization...

My mom and step Tom are visiting today and I am certainly rivaling ale's excitement--- sometimes (a lot lately) this girl needs her mama.

I'm actually just tired but focusing on the things that lessen that feeling and invigorate me-- also iv antibiotics that are still coursing through my veins exhaust me-- another week... Another week.

- Posted using BlogPress from my iPad

Location:Weekend wonders

Friday, February 25, 2011

the thankful thursday post that I accidentally deleted

i wrote a long blog post for thankful thursday...  anddddddddddddddd then I accidentally deleted it... i was not going to try to replicate it, but its sticking with me....

i was discharged last night after 9 days in the hospital...the last few days were incredibly emotional.. and there is not an iota of prednisone in my system... this emotional me... it's a grateful emotional... it's a present and true's just what is right now..

while in the hospital i wept...
-for the Sharpe's who, after a seemingly no glitched IVF process ARE PREGNANT... these amazing folks who give so much to this world have had god answer their prayers...

- for Sarah Jones who, after 32 painful Thursday's registered Conner's Angels great strides team ... I cried so many tears for what that must have been like... id love to get on a plane and walk that walk beside that family

- for Vertex trials who show amazing results for a rarer CF mutation,

- for the easing burden of having an RT give me pt, hand me prefilled nebs... nurses that set up antbiotics around the clock so i don't have to... for the doctors that just wanted to run a few tests that enabled the diagnosis of an automonic disorder that results in some tachycardia

-for josh who checked in just about every day because he cares

-for sara who has proven to be a miracle of miracles--- who lives... this woman lives

-for my family...Nitza, Ale, Mom, Tom, gram,Erin, Judy... who drove hundreds of miles to come and see me.. bring flavor blasted goldfish, dinners, play card games...

i am a part of this community... the CF community... the people that are there.. that rally... that pray... that care... that i will never meet, but think of each day... they are the front lines against this disease.. we stand in solidarity against a genetic mutation that has taken the lives of those we love... that adds hours of treatments to our days and months of intravenous anti-biotics to our years... that decreases lung function and for the grace of god raises it again... these people are the strongest people i know... the most beautiful...the men and women and children who know what it means to pray and hope against hope.... I am honored to be counted among them... honored..

So this is a not so well written replication of what I wrote and deleted....

Last night I came home and cried and cried and cried... and I've now been awake since 5am... no more tears and have walked my puppy, made some coffee... watched the CF episode of Grey's Anatomy online.. you know because I have CF.. it was about CF... and I'm ready to slowly embrace a day... filling my own neb cups... starting my own IV's... making my own meals... and I'm happy...that the army is behind me... that the cutest little boy is asleep soundly in his bed... that i have this life... and that its mine... and that i have met online in the last 2 years some of the most amazing people I believe i'll ever know...

Thankful thursday... on friday.... but sometimes it just rolls that way...

Wednesday, February 23, 2011

i carry your heart, i carry it in my heart

Title ee cummings

I am currently on day 8 of an inpatient hospital stay to treat an exacerbation due to cystic fibrosis. My pulmonary function is normally high-- normal pretty much-- it dropped about 40% so in I came -- I'm on say 10 of iv antibiotics which have kicked the infection-- pulmonary function up 12% from admission as of Monday, but I can feel that it is more now-- just need the data-

I'm hoping to get out by Friday, but... They have ascertained that my heart isn't working so efficiently -- I have had a regurgitation in my mitral valve--- but they are going to do some tests to check it out as well as a few other tests-- I'm scared ---

- Posted using BlogPress from my iPhone

Tuesday, February 15, 2011

Day 3- A picture of you and your friends

My best friends in the world, are my family:

Life often times takes twists and turns and and the road always leads home.

Wednesday, February 2, 2011

Day 2- What is the meaning behind the name of your blog?

One of my favorite songs is by Ingrid Michaelson. The name of it is Keep Breathing.

The meaning behind my blog is multi-faceted in a sense. There is the keep breathing that is in regard to Cystic Fibrosis and there is the feeling that I have had a number of times in my life in which life has been out of control, or sad, or scary or overwhelming and I have centered myself with the fact that I am breathing... if that is all I do, and in my case... that's a hell of a lot... I will be okay.... I have that.. I have breathing.

Before being diagnosed with CF, which happened on 9/1/2009-- this song was still one of my favorite songs... it kept me through a lot of tough situations and I remember clearly on the evening of 9/1/2009 I sat in my basement and drank 3 Drayman's Porter brews by BBC and played this song over and over again and was full of gratitude--- sure a nice headache and shakiness the next day, but I was okay.

Often in times of struggle I listen to this and believe it or not it is on my running list... it revs me up...

so all that I know is I'm breathing...


Written by Ingrid Michaelson

The storm is coming but I don't mind
People are dying, I close my blinds

All that I know is I'm breathing now

I want to change the world
Instead I sleep
I want to believe in more than you and me

But all that I know is I'm breathing
All I can do is keep breathing
All we can do is keep breathing now

All that I know is I'm breathing
All I can do is keep breathing
All we can do is keep breathing

All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing now

Tuesday, February 1, 2011

30 Days of Blogging Day 1- A recent picture of you and 15 interesting facts about yourself

A recent picture of you and 15 interesting facts about yourself

A recent picture is a self portrait taken 2 days ago:

15 interesting facts about yourself

1. I am in love with my partner.
2. I am in love with the little boy
3. I have 2 master's degrees.
4. I am a vegetarian.
5. I have done 5 1/2 Ironman triathlons
6. I chew about 36 pieces of gum a day.
7. I am passionately obsessed with doing laundry
8. I love folky music
9. I drink a WHOLE LOT of coffee.
10. I lack common sense
11. I read at least 1 book a week
12. I have cystic fibrosis and my little brother does too. My 2 sisters do not. 
13. I love the mail.. even if its bills.
14. Target is my sole favorite place to go on a Saturday.
15. We buy our groceries at whole foods