( lost in draft ) A very wecome lull in our lives

It is welcome in so many ways. Shawn is so healthy right now I am almost afraid to say it out loud. His last trip to the OR was May 18th OR infection @ site, admitted and treated with IV antibiotics. OR and discharged home five days later on Friday the 22nd.

He went back in on Wed the 27th for the Nissan procedure (tightens up the base of esophagus to stop any "heartburn" or reflux from getting into his lungs)

I drove down to Virginia on Friday the 29th.

Shawn was discharged home on Saturday the 30th.

I came home on June 1st.
Wednesday the 3rd Sara Lou went to DC with her school, returned on the 5th.

Friday June 11th Shawn had follow up with Dr. W, surgeon. Everything went really well, he has had none of the tightness he feels when needing to be dilated. We were keeping our fingers crossed.

Great Weekend

This weekend has been really really nice. Shawn was discharged home on Friday following his bronch. Everything looked great and he was still open, infection resolving and no signs of rejection.
So late Friday afternoon I took my husband home !!!

Friday night we went out for a ride, met up with some friends, and had dinner. When we got home, Shawn's surgeon called. I didn't get to speak to him after the bronch, it was the first time and it left me fairly unsettled. I was so relieved to hear from him. His voice is very soothing, my own personal valium.

Saturday was another great day, I felt creative and was productive. Shawn slept in until 2 in the afternoon, well deserved rest after a week in the hospital. In the afternoon I met my dear friends and neighbors for a walk on the beach.
Saturday night we went to a party and that was a really good time too. Just shooting the shit, laughing, trading stories, enjoying some good music, good drinks and good friends. The ride home was sweet and romantic.

Sunday I slept in and that afternoon we all went to a barbecue.

This morning we all got up and went out for breakfast. Went for a ride on the bike and then Shawn and Sara went out together. While they were out I completed another seaglass and seapottery piece, while sitting on my deck with the gorgeous sunshine beating down on me.

When they got home we sat together and had dinner.

Life is so good. This Wednesday is Shawn's official six month transplant anniversary. I am happily surprised everyday with the simplicity and the complexity of our lives.
I am so grateful for everyday. I am grateful to Shawn's Team and so very grateful to his donor.

...cause I got a peaceful easy feeling...

We are really having a good time, things are good for us.
We have this beautiful home so perfect, on this beautiful beach, that brings all of us so many things. The sheer beauty of waking up to the sounds of the birds in our trees, the oceans movement, smelling the air, the desire to want be outside engaging in it.
I'm inspired to do things I have always wanted to do but haven't.

You know when you fill out forms that ask you what your interests and hobbies are? I never knew what to put because although I had many "hobbies" in my head and I had many interests in my head but I never pursued any of them. Not really. I was too busy with other things and other people to waste time on doing something just for the pleasure of it.

My hobbies and interests have been everywhere and nowhere, everything and nothing. My hobby, my interests was trying to get along in life, trying to just move forward, trying to fit in in one school after another after another, trying to understand my own mind, trying to be a good dgtr, a good student, a 1st and 2nd time wife, a mother, a nurse. My passion was researching what I needed to do at that particular point in my life. I read books and articles and spent alot of time in libraries of all kinds. Trying to gather enough information to do something as well as I could.

Now I feel at Peace with most things in my life, I feel like I have succeeded where I need to most. I feel like I am a really good mother and wife. I feel like I was a really good Nurse. I feel like I am in a good person.

So here I am at this really weird place in my life. Somewhere I have never been before. I am at peace.
I have interests now, that are for the sheer pleasure of them.
I walk the beach, I collect seaglass, I research it, I plan and create beautiful things with it.
I cook dinner almost every night, and we sit and enjoy it together. Chit-chatting together.
I'm social, actually going out to parties, events, shows.

I went to a party over the weekend where I knew I was only going to know the hostess. I knew her through another person, but mostly on-line. We have a lot in common and she's great. I am very attracted to her vivacious personality, her adventurous and her positive attitude. She is open minded but not to a fault. We share the same passion for our children and for our spouses, for our marriages. She, unlike me, is a do'er. I want to be a do'er too.

She's nutty as a squirrel turd as my husband would say.

The point is that not very long ago I never would have gone to that party.
For a million reasons if I needed them but primarily the reason was I would be off of my turf with people I didn't know from a whole in the wall who might be cool and aloof, snobby, cliquey, stinky, crappy people. People that might make me feel unattractive, fat, unintelligent, and unwanted.

None of those things ever entered my mind until I was reflecting on the whole weekend, this morning. I can't believe I am going out and engaging with friends and strangers and not feeling the slightest bit of apprehension. How very weird.
Plus I had an awesome time, I socialized with everyone, talked with everyone, moved through the crowd with total ease, got my own drinks as neccesary, picked at pickies, even smoked a couple of cigarettes out on the balcony.
I thoroughly enjoyed my husband, talking with him, joking, watching him and of course the detoured ride home was a very good time.

So this whole rambling post is about what? I don't know. I'm feeling peaceful and I'm so thankful and I realize how much life I was missing before now.

I've arrived. I feel like I am here.

Shawn and I going for a ride

There we are headed out for a ride this morning. Yeah it was a really short ride because it was just too damn cold, brrrrrr.

Please notice I have about an inch of padding between my ass and the rear fender.

Last year we were going to get a new seat, or have additional padding upholstered into the existing seat. Then we were going to sell the bike because it was frowned upon by the Team.


They never would come out and say no bike but we got the idea and Shawn was actually accepting of that fact, but he clearly has changed his mind.

So I have the same little seat, it's a good thing I have some meat on my ass and it's also a good thing I am only 5 ft tall because otherwise my knees would be up around my ears. The pegs are high. It is actually a very comfortable position.

He wears a special mask to keep from inhaling any road goodies and the boost to his morale is well worth it.

It's funny down at the "Dew" where all the bikes hang out and Shawn used to go last year wearing his oxygen, the guys are all fascinated with the transformation.
They are very comfortable asking questions and it's nice to kind of get the word out about CF, transplant and organ donation. That's one group that should all be organ donors. Gross but as a nurse that's what we used to call guys that rode bikes, 'organ donors'.

Well Shawn is keeping his right where they are.

Life is a crazy thing.

Ahhhh soaking up every bit

Every bit of sunshine, every bit of relaxation.

Today I hung out by the pool for a couple of hours and soaked up the sun, man it felt so good.
I feel so fortunate to have this opportunity to sort of renew my spirit. I really feel rested and I can't remember the last time I could honestly say that.
My life is so good.

Today an actress, Natasha Richardson is either dead or dying. A freak accident, a gentle fall on the ski slopes, a headache probably caused by a bleed. Rumors of brain death.

You just never know.

I am constantly reminded to live. I have to be reminded because it is too easy to fall back into the pattern of just killing time, just letting the days pass by.

So here I am in sunny Florida with my 87 year old Nana and my 63 year old Mother and I am enjoying everyday.


By the way those feet in the picture belong to my friends two children and myself. They drove 4hrs up from Naples Florida to watch the Space Shuttle Discovery launch with me from the beach across the street from me. Creating memories.



.

Along for the ride

Wow, this is nice, really nice. My Mother and Grandmother fuss over me, I don't have to worry about a thing. Not laundry, grocery shopping, cleaning, cooking, running errands, paying bills, you know the real world.

I miss Shawn and Sara Lou but this is really nice.

It's funny I hadn't realized how much these last few years have sort of beaten me up or down I should say, but now in retrospect, I really see it. I just feel lighter, I'm not anxious, I don't have to have control over everything anymore. When I first got down here we were going out for dinner and my Mother held out the keys to me, I looked at them and said, "What?" and she looked at me like I was nuts and says "Don't you want to drive?" I said no, you can drive and she literally stood there confused.

I don't want to drive, I don't have to be in control, I'm content to just sit back and go for the ride.

It's wonderful to just enjoy the ride.

Better

I had such a great weekend. Friday sucked balls all day, I couldn't get out of my funk but by around 9pm I was feeling back to myself.
Saturday I babysat my niece Emily from 9-3, we spent the day at the beach, she added about 5 lbs of friggin rocks to her rock collection.

At 4pm my other niece Gianna who is 5, arrived her parents were going out for the night so it was a sleepover. She was soooo funny. Apparently the last time she had been to the ocean she was like two. So she had no recollection. I asked her if she wanted to go across to the beach she was excited and we headed over.
When we got to the wall and she could see the beach and ocean she stopped dead in her tracks and her eyes totally bugged out of her head, she spreads her arms out and says in this wonderful little girl voice, "What IS this place?" I said "It's the ocean." she says "It's beautiful"

Then she was off down the stairs stopping to touch the sand as soon as she got to the bottom, she was totally amazed. She's been to a beach but it's on Lake Winnapesauke in NH so of course the sand is different, well really everything is different.
She was at first concerned that she was going to get dirty but I let her know that when she comes over to our place it's all about getting dirty. She was so excited I let her take off her shoes and she made "cakes" decorated with rocks and shells. I was having the most terrific time, I love that exhuberance that kids have, that we lose as we get older.
I had to pry her off of the beach and she made me promise we could come back the next day.

Sunday morning she wanted to go over first thing, I tried to explain the tide to her but she didn't get it, it's a pretty difficult concept to explain to a five year old. I had to bring her over to show her that the beach was under water. She was shocked.
Once the tide was on the way out we headed over it couldn't have been more perfect. The sun was shining it was warm, I had given her a sweatshirt to wear so she could get dirty.

She was looking so lovely that a photographer from The Boston Globe asked if he could take her picture, Shawn agreed and wouldn't you know she made the front page of the Metro section. I went out and bought a copy, it's not on-line for some reason. It's page B1Maybe I can take a picture of the picture...hmmm?

So a great day and then that evening we had dinner with a friend of ours from California who's out here for a conference, she's a pathologist.

So what started out as a really shitty weekend turned out quite nice.

A Good Day

I had a beautiful breakfast with Shawn at this little diner I think it's in Salem. Then Shawn dropped me off at the library to attend the Swampscott Historical Society meeting. Which I did and I enjoyed that. Then I walked home on this gorgeous sunny day, dropped my purse off at my house, and headed down to the beach.

Today I am so grateful to have this apartment, to live in this lovely community, to have nothing and everything all at once.
Maybe that doesn't make a lot of sense but a few years ago our lives were so different. Today we rent not own, we drive an 89 Jeep that my brother-in-law gave us instead of the two SUV's we used to have. Today we don't have all of that responsibility hanging over our heads anymore, the constant worry about the house and knowing the house was a huge source of misery for all of us but unable to sell it to break even in it's run-down state. It was just really a ton of money going right out the window, a fucking shame. We had two hefty truck payments and ins payments and so on. I know most people understand how expensive it is to live and when your income is cut by two thirds you can't live the same way.

So this really isn't a bitch session or poor me, it's a declaration of my freedom. my freedom to be happy again.

Our lives have improved in so many ways, I am so grateful.

Having Shawn back is incredible. Sometimes I really have to stop and think is this real? Were we all so stressed out and squashed just a few months ago? Was he really on the brink of death just 14 weeks ago? Were we up to our eyeballs in debt?
It really seems like it was just a long bad dream or sometimes it seems like it's all maybe just a book that I read and not our history, our reality.

Every morning I wake to the sun rising over the ocean and bouncing off of the water and into my room. It is glorious.

My husband is breathing deep and peaceful.

We go out and enjoy seeing our friends, a lot of whom we haven't spent time with in years because Shawn was so sick and I was so fucked up. We all sit at the dinner table together each night. We all talk and laugh and goof around because Shawn's not suffering anymore. He's fat and has color in his face and life in his eyes. He can breathe. He's better. It's the most wonderful thing in the world. I can't believe how Blessed we've really been.

Today we pay our bills ahead of schedule every month because we are living within our "new" means. We live in a state that although not perfect has healthcare coverage that is made affordable to just about everyone and we'd be lost without it. Shawn's Transplant Team is amazing.

Well i realize that this whole post has been a bunch of disjointed rambling but today that's where my mind is. All over the place but very happy
I am so happy.

An Amazing Night!

Woo hoo would you just check out that stud!

In all seriousness, this was one of the most incredible nights in my life! It was amazing, the energy in the place was just crazy. My Babe was on fire, just enjoying everyone.

I felt wonderful, my sister-in-law who works for MAC cosmetics did my make-up for me, I even had fake eyelashes on !!! Hee hee I felt like a movie star hahahhaa. Shawn bought me my top, I wore my hair in ringlets which is always a huge hit, Shawn loves it, I don't wear it that way very often because it takes like two hours with a skinny skinny curling iron.

I am normally selfconscious and somewhat awkward in a group but I'll tell you I didn't have a single twinge of freaking out. I think they were pumping something into the air, endorphins I bet!

I don't know but man it was wonderful, Shawn and I socialized with people we haven't seen in years. It was like getting out of prison or something.
I feel like we had been in such a hard place for sooo long, it was just so wonderful.
I have never been so proud.

I can't figure this out, I don't know how to get the pictures to be where I want them to be but I guess it doesn't matter!

You have my husband up on stage giving a little speech.... The tall girl with me in black is Shawn's little sister, Sarah.....The close up is me and my Candy Girl........The group shot is my girl Kim, her husband Joe and friends Brian and Mary...I swear Shawn wasn't drunk he was intoxicated with all the great energy in the place.

This was such an amazing night, I'm gonna do a separate post cause this is making me nuts!

Shawn's Big Night

Alright having a crazy time trying to get pictures from Shawn's benefit to here so bear with me

No Rejection

Me and Sara Lou Hoo









Our studly pooch Jake











Shawn and I goofing in the hospital, (he's our other stud)











Shawn's very young,28, and very sweet anesthesiologist


Yayyy Good news all around!
I picked up Shawn from the hospital yesterday afternoon, he looks wonderful and he is feeling really good too, still has a little cough but no "pneumonia"

His cultures came back showing MRSA which he has been colonized with for years but I assumed it wouldn't show up in the new lungs, but I thought wrong. They treated it pretty agressively with IV Vanco while inhouse and have sent hime home on PO Linezolid, crazy expensive, 9 pills get ready for this........$826.20 !!! Can you believe that? How is it possible? Thank God we live in Mass. He had to wait for a couple of hours for it to go through the insurance but it did, thankfully.

He got the call yesterday afternoon that his biposy came back with no signs of rejection. Phew.

I kind of expected or was at least prepared for rejection. It's crazy the last biopsy he was feeling perfectly fine and came back with rejection, this time he felt like shit and had crap going on in those lungs and no rejection. I'm not complaining but man you just can't tell.

I have to change the date on my dgtrs camera, darn

He is Super Bad

Oh Man he is soooooo bad! It's beautiful out right now, gorgeous day, light sweater weather. Well with warm weather around here it brings out the motorcycles that are just sitting in their garages waiting for the Spring.

Shawn was supposed to give up his bike for transplant, and like a puking teenager who swears they'll never drink again if they just get through the night, he has re-negged on the bike.

Guess who just had to ride around the block. Yup. He is such an ass. He's still on weight restrictions, up to 15lbs, and he's out riding his 600+ lb bike. So I'm sitting out here on our deck, with my laptop perched on my lap and listening to the roar of his bike from somewhere down the road. I'm somewhere between worried, irritated, and excited.

Oh he's back and in one piece and smiling from ear to ear.

I have accepted that Shawn is not going to behave. He's not going to do the "smart" thing.

I can't really bring myself to be mad about it. I think about our friends that have done the right and safe thing all of their lives and didn't stop them from getting cancer, dying in a car accident, or being stolen away by Cystic Fibrosis. So maybe the lesson in that is to enjoy life.

Don't be a fucking shithead, but take some chances, push yourself a little bit, pursue the things that bring you joy.

Maybe I am just trying to rationalize away the fact that my husband is a nut and doesn't listen to me, but maybe it's o.k.

If you could have seen the smile on his face as he throttled that bike up to our drive, the look of pure joy and freedom plastered across his face, you'd forgive him too.

This time last year my husband was dying and now he's living. Amen to that.

Before and After Transplant Photo's

This was in February of 2008, one year ago. Shawn weighed in at 134lbs, was on oxygen 24/7, and basically spent his life in that chair. My poor Babe, he broke my heart.














Here is Shawn February 2009, 10 weeks after his transplant. Weighing in at 185lbs!

Check out the new and improved Shawn Stickney, doesn't he look amazing?
This was last night at a birthday party for a friend, our first social outing in a very looooooong time. I am so proud of him.

Check out the Flyers for Shawns Benefit

His friends Rob, Bill and their crew w/ my girlfriend, Melissa pulled this whole thing together and it's going to be an amazing night, I can't wait.
We are so blessed!
Just as Shawn was freaking out because his insurance was temporarily canceled and he was going to pay for some heavy hitters out of pocket, pennies from heaven. Amen

A Good Day

Today was a good day for me, all around.
Shawn is still in the hospital, he looks really good, feels good and looking forward to getting out.
We are in a mad rush to find a new clean home for us. It has been a lot to handle on my own.

Shawn called me this morning he had actually taken it upon himself to go down to the hospital/family library get on the net and hunt down apartments. He found a great little townhouse right across from the beach, in a very nice community. He made all of the calls and made arrangements for us to take a look at it. He then surprised me by conning the doctor into letting him out to come see it with me. After all it's Shawn who has to breathe in it.

So it was such a great treat, tonight Sara, Jake and I drove into town and picked up Shawn and drove off into the night.
All of us together driving in the truck, out through the city and down along the ocean to check out the digs.
It was so nice just to be with him. Just to look over and see him sitting there, listening to him talk, smelling him, being able to reach over and touch him.
It was wonderful!

The place was very nice. Right across the street from the ocean! Duplex, no shared walls, private driveway, clean, just affordable. The location is wonderful, short distance to Sara's school and into Boston.

Anyhoo who cares I am high as a kite just from spending time with my man. He makes me so proud.

A good night

Good vibes

Shawn and I just returned from a long ride on the bike. I love riding with him. No CF worries. I feel like we are "normal" again. Just Shawn and I. I have my arms wrapped around him, my thighs squeezing him just enjoying the ride. His respirations are unlabored and all you hear is the roar of the bike. Good times feeling free!!!!

Other good news...We have a treadmill !

Shawn actually borrowed it from a friend and it is very fancy shmancy.
It has those grips that will tell you your heartrate, which is great for him. well probably good for anyone.
Now I have no excuse not to exercise. I'm looking forward to getting back into shape, cardio/stamina wise.
When I was working as a Visiting Nurse I often had patients in highrise apt bldgs. Because the elevators were always slow and often stinky, I always took the stairs. Climbing 10-12 flights at a time and usually 2-3 times per day, while carrying my 20 lb bag. I didn't realize what good shape I was in.
Now even hustling through a big parking lot my legs are aching.

Another incentive, my 20th high school reunion is this November. I want to be able to go without being paralyzed w/ self doubt. I really don't want to spend the night fidgeting with my clothes, adjusting my position, and belittling myself.

Sara Lou is doing great her first couple of weeks of 7th grade behind her she is back in the groove again. She is an amazing child and I am so grateful that she is in such a great environment school wise. Pre-K through 8th grade their are a total of 182 students in the school. There are 23 kids in her class. She has been there since kindergarten and many of her classmates have been as well. They all grew up together, it's really nice.

Well just a quick post but I'm feeling positive and less stressed which is a very welcome break from my normal anxious state.

Woo Hoo

Better Days

Well we had a great early weekend.
Shawn, Sara Lou and I spent a couple of nights @ our friend's place up on the lake. Some well deserved R&R spent with good friends and family.

Good friends + barbecue + hot-tub + 4-wheeling + boating + sunshine= perfect weekend

It was a stress free weekend once we left our driveway.

Now we're home, back to the grind. I'm going to try and carry those peaceful feelings into the week.
Sara Lou starts school on Tuesday, we still have to get supplies!!!!

Shawn looks great, he's been out riding since we got home. It makes him so happy.
I love him

Still frustrated with his apathy re CF.

Fun news: we're meeting up w/ our new friends, Joe and Kim, for ice cream tonight.

There's going to be a meet-up in NYC, I really want to go, seeing if we can work something out to make it happen. I feel like I need help from "them" with Shawn.
This is crazy sometimes.

Some days I just don't know what the hell I'm doing.

CF free day

Shawn declared Sunday to be a CF free day.
He was very good about it but on Saturday he made it very clear that on Sunday he did not want to discuss anything CF related. I could not mention any research that I had dug up, or doctors, treatments, transplant related issues, allergies, my obsessive cleaning, his dietary habits etc.

He needed a day off and I must say that ultimately it was a relief.

I guess I had not realized how our lives had been consumed by CF. My mind has been preoccupied with his health for so long that I initially had a type of withdrawal. Things kept popping in to my head and it took a concerted effort to push those thoughts away.

Don't get me wrong, he took his meds/nebs but the whole regime was completed in a very gentle manner.
Rather than laying all of his meds/supplements out on the table, I put them into a delicate crystal shot glass.
His HTS which he has been having a hard time with I diluted with normal saline, this resulted in an approx 5% mixture which he tolerated very well.
He was compliant without "discussion" which has not happened in a very long time.
That was really nice, for all of us.

So, on with our day.
Sara was off by 11 to a birthday party with our neighbors/friends/often lifesavers The J's.
Shawn and I set off on the bike. We went for a very long ride.
While the bike is in motion, Shawn does not need supplemental oxygen. My theory is that due to the CPAP ( continuous positive airway pressure) effect his body obtains the oxygen required.

We rode to our usual first stop, Honey Dew donuts @ the head of the lake. This is a very popular "watering hole" for a large group of bikers. Friends of Bill W's I believe.
We had our ice coffee's, actually Shawn had his I dumped mine accidentally and was mortified.

Any hoo off we went. Riding up long winding back roads all the way up through Topsfield, Newburyport up up into Salisbury Beach.
The hub bub of end of summer was in the air. It was beautiful just passing through.

Shawn took the highway back home. Now don't get me wrong I love being out on the highway, especially on that beast but man my ass was so numb I could not tell where it was on the seat after a while. I'm no wimp. My seat is only about an inch of cushion resting on top of the rear fender. Vibration is an issue.

We left around noon and got home just after 5, good day of riding.

It was a wonderful Sunday spent with my husband. Just Shawn. Not CF Shawn. Just Shawn, my Shawn.

The evening was just as lovely. Our Sara Lou arrived home shortly after Shawn and I. Sara Lou helped prepare dinner, a fresh salad made up of produce from the Farmer's Market, linguine, meatballs, sausages, and good Italian bread.
What a feast!

We ended the evening with Sara chit chatting away in bed with us before retiring to her own bed and her books. That is my favorite time. The three of us jumbled up on the bed, talking, giggling and yawning. I love that time.

A great ending to a great day