you don't always get what you want. you get what you need

Another day another day. I am still in the hospital with no official discharge date. It is likely to be tomorrow, but we'll see how it goes.  I was upset yesterday. I ranted and raved and cried and pretty much had a big ole temper tantrum. Today I read, rested, facebooked, texted, wrote some and behaved liked the 36 year old adult that I am. Much needed for all those around me and even those not around me.

I WAS SUPER CRAZY.


At any rate, usually each day there is something, be it lyrics to a song, a look from a person, something I witness, a comment from a friend that opens my eyes and today, dear Ronnie made a comment on one of my facebook posts that said  with regard to my lack of discharge "I know it stinks, but if you are not getting discharged, you need to be there. If you need to be there, you need to be there :)"

HELLO-- and that was it. He is right and it made a ton of sense and then I paused and asked God to help me with the battle of letting go of my will.  It's his, but sometimes (well a lot of times) I take mine back.

I have had a very relaxing afternoon -- I am okay and exactly where I need to be at this moment in time... and that's ok because it is what is supposed to be.

I'm looking forward to running a lot when I get home and getting back into my real groove and putting a marathon schedule together for the hartford marathon that will take place in October, and spending time with my family and friends, going to church, playing with puppies and loving my Nitza and Ale and Mom and Tom. I am very fortunate and grateful, though slightly stir crazy... but that's really okay.

Happier today... 

need to keep it in sight

I think its sufficient to say that today wasn't a great day. As I get on in weeks in here I start to get crazy... add solumedrol to the mix and crazy turns to almost rabid...its so hard to be grateful in those moments that i want to wring someones neck... and i'm not violent... i just cry, which I also did for most of today-- thank you solumendrol and dr p taking a vacation day. i need to keep sight of my heart and my path..

i will briefly digress... there is an initiative going on here called "continuity of care"-- what they are hoping for is that the cf patients get more comfortable with the other docs, PA's and APRN's so that when their primary pulmonologist is on vacation, the patient will still not be rounded by the hospitalists but by the other MD's in the office-- Given I am really gung-ho on lean process- I was entirely on board with this, until........................

it was my turn.

I came in here pretty sick. My stomach was awful. My lungs were a mess and I had 2 years of a tooth abscess in my mouth that I had no idea was there that had eaten away at the jaw bone, otherwise known as osteomylitis. 

I had 2 oral surgeries, 1 endoscopy and what feels like a million therapies... all that being said, we found a routine that worked for me NOW... not necessarily in 5 weeks but now when it was needed and working... so............

My dear Dr P had a vacation day and I woke up this morning to 4 of my meds changed by the APRN because they did not understand why I was on them Um.. it is my 14th day here, you have looked at my chart a number of times prior to today.. so um? what's the issue (by the way this is the second time the same aprn did this when Dr P was out)

So I start crying (A LOT) and email dr p immediately. so the nurse is the liason between my hysteria and the aprn... and my poor mother just had to listen to me, but thank god she did. so they dc'd ALL my meds IV and I am on 4 new meds and the rest PO... Um-- I don't absorb abx orally, but I guess we can play this for a day.

So tomorrow I am supposed to go home if "I'm good tonight"-- What the hell does that mean? Don't wet the bed? Don't eat too many snacks? dont' say bad words?

Anyway this is a rant of any rant and I guess I write this for me so it's my rant and i feel a lot better now, but worst fear is that my stomach will get all messed up with the steroids and removal of some PPI's-- we'll see.

Tomorrow Tomorrow

The sun will come out tomorrow

It's only 

a 

DAYYYYYYY

A  

WAYYYYYYYYY

Yes.. that's how crazy I feel.

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.

Methylprednisolone Mornings

I've been awake for an hour. I went to bed 3 hours before that. To what do I owe the delights of such sleep you ask, a methylprednisolone burst.

9 days. I am on day 2.5. There are ants running under my skin....

I'm not normally a very willing steroid taker... I resist. I do what's best in the end, but I'll admit that I resist along the way...however, when I talked to my favorite dr p on Friday after the appointment with the immunologist and he said that we are doing a medrol burst (at least its oral as opposed to IV solumedrol)-- I said when do we start-- he paused... for more than a beat...

resistance is futile.

my pft's are in the tank.  stairs are beginning to be slightly more daunting... and i want to avoid a re-admission at all costs... so we're taking the ride... and though I'm not thrilled to be on it, I have the at-least-the-steroids-will-reduce-all-inflammation attitude.... which is good stuff...

in other news...
today, sunday, which is different than 4 hours ago, which was still saturday.... our trio (plus puppies) is headed an hour north to my mom's for the day. It's the infamous Holyoke, MA St. Patrick's Day weekend celebration (and my birthday tomorrow)--- so i will see my sister and her partner, my other sister, my brother in law (also has a birthday) and my nephew (another birthday)---- A will get to bask in the glory of my mom and Tom, who is adores and who equally adore him and we'll laugh... and the world knows that we all need that bottom of the belly rising up over the top kind of laughter sometimes to really just make it all okay...

I'll be eating carrot cake.. (it was my birthday request.. and yeah I'm turning 36, but I still like to have a cake)---

I picked up Franny and Zooey for old times sake yesterday.. and I'm happy I did.. thanks JD