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Thursday, June 9, 2011

Then and Now- the 2011 edition

For the sake of this post, then encompasses 2000-2008 and now is 2008 onward. Ok.. Glad we got that squared away.  I was athletically active from the time I was about 6, maybe before. I played year round soccer, basketball and later softball. After high school and college, I became a runner and then a triathlete (to pacify this swimming coach at the gym I went to who regularly told me I had promise) and then a runner again.

There are a few things I know about myself. I often compare myself to myself at other points in time and realize that is not healthy. I am extremely competitive against myself and I push myself way harder than a human should be pushed.

I had a pretty severe bicycle accident in 2006/7 when I was training for Ironman Wisconsin. It resulted in 18 procedures/surgeries and the finale was the loss of my right kidney. I was hit by a car and needless to say, my road biking/triathlon career ended at that precise moment... that is fine with me. It was then. It was at a time.  My CF spiraled out of control from that point until now (simply just meaning the last 2 weeks) and I was unable to re-reach that physical fitness, but I've never lost hope that I will one day run 6x a week. As they say, "Every journey must start with a single step." (I did not coin that phrase, and I'm   sure I got it wrong, but credit where credit is due.) Today I no longer want to be 5% body fat. Today I want to be happy.

That all being said. I LOVE with all my heart and soul, to run. I love the motion, the speed (or lack of speed as these days would have it), the sweatiness, the dried salt all over my body, the mental clarity...

I Love to Run.

I went through the archives (then) to reminisce and I was thrilled that I had that time, then... but you know... I am much happier and stronger now. 

The following photos are circa 2004-2007

Those are all pretty cool pictures to have in my scrapbook.. but wait.. look at this joy

This is me now (today actually) happily propelling forward in some motion... I guess until you can't do something you don't realize how happy you really are doing it.

I am blessed because I can breathe.

Wednesday, June 8, 2011

90 Degrees and Sweaty!

Today I am extremely happy to have a normal kind of day. It is 90+ and humid in the northeast, so I am in the central air. My asthma is horrid in this weather, so I am being cautious. The errand or 2 I needed to do I did between 8-9:30am. It feels reasonable to lay low. It's not something I've ever been good at. I push and push and push, but the doctor wants me to heal so now I heal and heal and heal. It's a good life.

I haven't gotten my liver values back yet.  I should get them back later today or tomorrow. I am looking forward to that.

I go for the 6 hr, 50gm IVIG infusion on Friday at the hospital and then Nitza's parents come in on Saturday... I am so excited for their visit!!

No news here is good news here.

Tuesday, June 7, 2011

Little victories

I am a list-maker. I transfer lists from i-devices to paper and back. I am completely anxious if I cannot complete said list. I am NOT spontaneous, but am at times impulsive. I lay out plans and I follow them.

In the northeast today it is above 90. I completed my lists and was sitting at the kitchen table. I thought , maybe I will go to the lake for 2 hours...

What??!!?? So I thought long and hard about it for a good 20 minutes... Action, consequences etc. So... I packed 96 oz of Gatorade, my chair , sunscreen and the nook. I drove the 3 miles and took this is...

The little road reminds me of Robert frost.
And then I sat and looked at this...

And the world saw this...

And all the while I really came to understand that sometimes, just sometimes it's okay to leave the list on the kitchen table and the laundry unfolded and simply bask in the beauty of gods world.

Happy Tuesday

Monday, June 6, 2011

what the pft?

As most of you know, I have had a terrible year plus. My pft's hit their all time low about 8 weeks ago at an fev1 of 51%. I was sick. It took some time, but the root cause of my systemic infections and inability to fight infections was finally identified and treated.

I went today to blow pft's and THIS is what happened:

That is an FEV1 of 134%.  What???? I was whooping and hollering and happy.. because I've spent, of the last 24 months, at least 18 of them with my port accessed and some cocktail of 2 or 3 antibiotics going into my system.  For the grace of god...
We also drew liver labs and did a sputum.
This topped off a really wonderful weekend.

About 5 miles from our home is a cute little lake and it happens to be ale's favorite summer spot... we spend most weekends there as a family or with friends... this weekend we spent saturday at the lake with some friends:

Ale looking out at the water

Cuddling into his monkey towel

Nitza drinks gatorade

He's the muddy king of the lake!!

... and much to Nitza's dismay.. a tadpole.

On Sunday we went to MA to celebrate my sister's graduation with a picnic.

Erin's Backyard

Erin and her diploma

Erin's card

Mom and Oscar

Kelly and Oscar


Tom and Oscar

Brother Mike and his girlfriend and son


Mom, Nitza and Ale

I am truly grateful for the abundance of my life.

Saturday, June 4, 2011

saturday (almost) sunrise

I'm up again. This time, however, it had very little to do with sadness and a racy mind, and much more to do with the great idea I had that we have a family slumber party... we got ale a full sized loft bed to go over his bed for a few reasons... the whole "nook" effect under, having a place for grandma and grandpa to sleep, and keeping his room updated to his age.

SO, i wanted to be sure nitza or i slept in that upper bed for comfort, safety etc before ale slept there alone, so why not call it a slumber party...

and so i am awake. the five year old sundial is skinny with bony elbows and knees, but the bed was fine :)

ale rode his bike for the first time this season yesterday. it was adorable. he is a very very cautious little guy. he has always approached life that way. last year on his bike he peddled, but stayed close to me. this year, i put his helmet on him and did the whole bike safety check thing and helped him on the bike and turned to close the garage door and the boy was gone... like lightening bolt. so he gave me his "taggie" to hold and I ran roadside next to him while he peddled away in flip-flops and crazy looking hair and we were a sight to behold and it was the most beautiful 40 minutes of my day.

Friday, June 3, 2011

rolling along with love in my heart

I never really know which words to capitalize in the title of a blog post.. i'm much more ee cummings-like and would prefer to write in all lowercase letters, but once in a while that auto-correct throws a capital letter and I just don't feel like going back to fix it. additionally, sometimes and i stress sometimes, the catholic school grammar teachers squeal in my head.

and i digress.

(image courtesy of

on the health front, things are progressing nicely. my lungs are taking in the air, and loving it. the new steroid we've added to my mix has really made a huge difference. unlike some cf patients, i respond incredibly to bronchio-dialators-- this is my asthmatic component. i am grateful for this. my liver enzymes continue to trend downward, and we have identified that it was a toxic reaction to the accumulation of six months of iv antibiotics (with some breaks here and there.) it will take a while to normalize completely, but this whole liver, acute health situation has really opened my eyes... about a lot of things, but at this moment i'm referring to my body.
i'm pretty health conscious. i don't drink. i don't smoke. i don't ingest any product that would harm me, except coffee but that's a whole other post, and even now i'm down to 2 cups a day.  i was taking 16 pills every morning, many every 4-6 hours and then another handful at night. with the help of my doctor, we've cut it down to 4 in the am and 2 in the pm... and i feel good as gold right now. this is my vehicle, my way through life and i really need to push back sometimes and draw the line. some meds are necessary at some points, but heck not always all of them.
i am also back on my every three week ivig infusion cycle that i had gotten off of due to health insurance issues. this is really helping my immune system and energy. i am thankful to god for where i sit right now.

on the family front, life is beautiful... and beautiful doesn't seem to cut it, you know? i adore my family. i am in love with them... and it's not the big things... i can do without the big things... it's the little things. two nights ago i was cleaning up the kitchen and preparing dinner for nitza and myself (ale had already eaten) and he had his 475 thomas and friends engines out. he has been a die hard thomas lover since he received his first engine from a family friend at the age of one. he is five and a half and those engines, though they get put away sometimes, are a dear confidant of this young boy... so, in the middle of moving around the kitchen at seven pm (when bath time should be commencing), he wanted to draw faces on tiny squares of paper and tape them to the front of the engines so that every face would look like the troublesome trucks

(image courtesy of

(why the troublesome trucks and not my personal favorite Percy i'll never know), and i looked down at his serious little face, scrutinizing the line of engines and i stopped what i was doing, went to the craft bin and got white paper, a gray marker scissors and tape. (dinner was starting to burn). I cut teeny tiny squares (scissor anxiety) while he drew the faces and then upon request i taped them... (and dinner turned out terrible) and these were the most rewarding, happy moments of my day because i am alive and have this beautiful boy and have the time to cut tiny squares... a thousand times over i would cut tiny squares because Sarah Jones cannot cut tiny squares with Conner and so while I was cutting tiny squares with ale, i was also cutting tiny squares for sarah... for conner... and later on, after ale was many moments into sleep, i cried... in sadness for those who have lost and for true gratitude for what i have.

(image courtesy of

i have always been a feeler. it has worked against me at times. it is hard to be in this world when sometimes you don't feel like you have skin. as kids we went to a public swimming pool just over the bridge from home. they had 45 minutes for child swim and 15 minutes for adult swim every hour. one day during adult swim there was a young girl in the water splashing around with her mother. i asked my mother (out of curiosity, not envy) why this little girl was in the water (i was always afraid of breaking rules), and my mother told me it was because she was blind and needed to be in the water when it was safest for her.  i was quiet. i sat back and watched. the fifteen minutes of adult swim passed and the girl got out of the water, but i couldn't go on laughing and playing like i did before i understood what i perceived to be this girl missing out (whatever that really means in hindsight). the rest of my day i just wanted to play with the girl and i was sick about this for a few days. i have pain when others have pain. i don't love it and i have learned to deal with it, but at times its really really hard. and that's why i am awake. something wakes me in the evening and my mind starts on a movie reel of what ive taken in from the day... just life and sometimes there is just enough sadness that i cannot go back to sleep, but you know that's ok. i like the person i am and if it means some sleepless nights, so be it. i am able to truly connect with people and i believe that its a part of me (and so many others) that god has put in my heart... and there is a whole lot of strawberry eating beauty in this world for me to take in

and did you know my favorite color is orange... i love everything orange and i mean everything, and it makes my heart so happy to see this orange gerbera daisy blooming in our garden after nitza replanted it from when my mom brought it to me in the hospital.

wow this is getting long and babbling.  today is friday and i am looking forward to today and the upcoming weekend.  we are making the trip to see my family for my sister's graduation party...
DID I MENTION THAT ERIN IS A NURSE?? (i love you my dear baby sister). hopefully there will be pictures to follow.
Beautiful Erin the the processional to the stage.


let the madness ensue with a endless face squeezing hugs from my blondie nephew to my gorgeous grandmother, his great-grandmother.

ive been having trouble uploading pics, hence the last number of posts with a whole lot of words, but ill get it figured out.

for today, this is how i am going to take on life.

 thanks for reading my very long windy monologue about troublesome trucks and a whole lot of feeling.