The real voyage of discovery consists not in seeking new landscapes but in having new eyes. Rilke

Day 5 in the hospital again. PFT's tomorrow. We're hoping to pull some pre-med 60's.. That's the goal.
I have a lot of what everyone else with CF has when they are her.. tightness, rhonci, mucus, headaches etc.
I'm on IV steroids, Vanco and Merrem. While each of these alone causes exhaustion, the cocktail is really tiring. I took a 4 hour nap today.

This stay has been different so far to me than any other stay in that I have been given the gift of the ability to be still and reflect... on life, on what it means, on its true shortness. My life will be different if I look differently at it... I am grateful for medical insurance, the vest, PFT's, CPT, nurses, doctors, family and all the people out there who do care.

The path is before me... and I believe it in... I am focusing on not letting the little things or inconsiderable people get me down.

On Sunday I did a lot of this:

And it is all that much better with this cute boy with me.

 Today I washed my hair.. not profound to many, but profound to me when sometimes it hurts to get up.

This is what i get to see every time I turn my head to the left...

there is beauty here-- I choose to look at it.

IV Solumedrol-- Read at your own risk

So not a whole ton of improvement breathing-wise.. I understand it takes more than 3 days... I'm not the most patient.. They have added IV Solumedrol to the mix. I was on the medrol (pill form of solumedrol) for 7 days prior to this admission and it didn't do a lot of good. So, I'm cranky, weepy, super sweaty, jumpy, restless, angry, hopeless and still full of nasty mucus, still short of breath and pretty downright temper-tantrumy.

I want to be better. I want to lace up my running shoes (literally) and just run. Not staying within a 2 mile radius of my house "just in case." I'm sick of paper masks and being bound to my kitchen. Don't get me wrong... I love my kitchen and the warmth of my home, but there is a whole wide world out there that I just want to take by the bootstraps and live...

I talked to my Tom tonight and he was joking around with me about the annual family easter egg hunt that he might give me a few clues about where the eggs were hidden (to digress-- even if ST told me, my sister Erin will take anyone in her path down for those eggs... so ... )-- but it got me to thinking... We have this one shot... this one life.... I just can't do it this way....

I want my baseline back.. I want running back 30 miles a week (ill take 50% of my peak), I want to read a FULL book to Alejandro at bed time and not have him ask me when my regular voice will be back.. you know, the one that doesn't run out of breath mid way through The Lorax....

Tonight Ale (he's 5) asked me why I am in the hospital so much. He knows I have CF. He knows I have mucus. He knows I'm sick. We re-explained to him all of those way too sordid details for a 5 year old to have to know... I told him that if he wanted to stay at home all day tomorrow (Sunday) with Mama (nitza) he could so that he could play with his lego table at home not the lego table we rigged up here and play with puppies and do those kind of things and he said, "No Tari (he calls me tari... Kind of like tara and mommy mixed) i want to be where you are." SLAM... I felt something really big in that moment... he's five and he understand more of life than I do at times... except when he is putting darth vader's light sabers into my mother's nose or mouth or ears.. (sorry mom.)

Wow, I'm all over the place but I guess I'll keep going... back to the life is short thing... I am not fulfilled entirely.. let me explain that..I am utterly head over heels in love with N... I would give my life for ale ... I have the greatest mother and tom and siblings ever...it's the other parts... there is a profound emptiness... and it could just be because I want to be better.. or normal--

so i'm sad and im lonely and Im drenched with solumedrol sweats and i want to go home and I want to get better... and the whining will cease now.

Back In the Hospital

I was re-admitted to Hartford Hospital today. I say re-admitted because I left here 32 days ago. Dr P-- my super fantastic Cf Doc was here to meet me along with his PA S. I'm in good hands and am confident that things will look up from here. I'm on 2 liters of O2 which has given me pink cheeks!! N and A brought me, played legos and had dinner... I am so fortunate for my family. They took a lot of blood and are testing a number of things... more to come. Today, this evening, now... I feel hope.

I haven't been at it that long

I read a lot of CF blogs, people closer to my age and blogs that mommy's and daddy's write for their littles. I love these blogs.. parents who follow strictly regimented schedules to get multiple vest treatments in, nebs nebs and more nebs... pills multiple times a day... It's tough... and I still have not quite acclimated to this schedule... I forget to do nebs... and I hate the vest.

With the sudden drop in lung function, I committed to doing the nebs, consistently... and I have followed through thus far. I committed to changing my diet. I have entirely followed the recommendation of the cardiologist and CF team.

Today I went for a follow up PFT. I was emailing with my doc yesterday and said, I'm really not concerned about the PFT. It may not have gone up very much, but it DEFINITELY did not go down... and down it went 5% for my FEV1 to my lowest PFT ever and my small airways dropped about 30%.

I'm pale with grayish lips and a drive to get better... what does that mean, you might wonder... the hell if I know.  I did my regular exercise tonight, with struggling, but I completed it... i ate my high protein dinner...

I'm waiting to hear if we're doing home IV's or back in the hospital... More to come.

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... hmmm...so this emotional me... it's a grateful emotional... it's a present and true emotional...it'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...