Monday, March 30, 2009

Ugly weather out there

Ugh the weather is really gross today. The sky is gray, it's drizzling out and feels raw. Yuck. My plan is to go out, hit the tanning booth, then head to the craft store to pick up some supplies. I have sorted through quite a bit of my glass and realized that ALOT of it is not jewelery quality. Lucky for me you can do a million other things with it. I happen to love the look of stained glass panels, and you can use seaglass for this as well.

Plus it's really free-form so if I don't over analyze it I should be able to create some very nice panels. The over analyzing is what gets me every time.

I'll spend hours sorting and laying them out and then feel like it's not quite right and just dump them all out. ARGH!

I have to keep reminding myself that my work does not need to be like anybody else's work. It does not have to live up to anyone elses standards. Unfortunately I can not get over that hurdle. Why? Who the hell knows but today maybe a little closer to getting something done.

What a bitch session.

Oh and I have a guy from the beach who is turning into a bit of a problem for me. I met him while collecting seaglass, he makes small talk and I practically see him everytime I'm down there. He seemed very nice, always had little tid-bits of infromation about the glass, history, etc. He is the one who reccomended I go to the Swampscott historical society meeting which I did. The first one he wasn't at. When I saw him next and he found out I went he said he was going to the next one (they are once a month). Everytime I went down to the beach, which was MY quiet time, he is there and always comes right over to me and starts chatting away, personal shit that really makes me uncomfortable.
I asked Shawn to come to the next historical meeting to "meet" him. Shawn did, introduced himself, growled and peed on my leg and then left.
The guy frigging walked home with me. When I got to the corner of my street I said I was going in to make lunch and see you later...he went down to the beach and stayed there for hours. When I thought he was gone, I went down and he was there but sitting close to the wall so I couldn't see him from my house or the street. I nearly had a heart attck.
He says all these cheesy things in a laughing manner like"Where have you been my whole life" and crap like "I wish my wife was more like you". I always try and laugh it off I don't know what to do. I don't engage in the conversations but he keeps going, I usually end up just leaving and it pisses me off.
So a few weeks ago before I went to Florida, he comes down to the beach and leaves a little gift bag on my pile, and takes off. It had some shells and pieces of pottery and shit from the beach, things I know were part of his "treasure collection". Shawn was none too pleased and wanted to confront him in some way but I didn't think it was a good idea, the guy is not 'all there' if you know what I mean.
I go to Florida, forget a bout the whole thing and when I came home, the weather was too crappy for me to go down to the beach very often. So last week, wed or thur, I'm home alone and the fucking doorbell rings, I go down and he's standing on my frigging stoop. I almost shit. I opened the door, he said he hadn't seen me and was worried about me, brought me a gardening book he thought I would like blah blah blah. I was polite but quickly said I was cooking and had to run. He said he would see me on the beach and that he had missed me. Super Creepy.

I called Shawn, he was super pissed. The weather was bad so I didn't go down to the beach and then on Friday morning while the tide was still out I went down for a little while and he fucking shows up like ten minutes later and starts following me around the beach blathering on and on about his wife and how he is having a yard sale and wants me to come by, tells me where he lives. Mind you this is on a Friday, middle of the day and crappy weather. I tell him I'm busy and leave the beach. I go home tell Shawn and he's even more aggravated. Later that day in the early evening around 6, the tide is out I go back down and he fucking shows up five minutes later with pastries and is trying to give them to me. I called Shawn on my cell, Shawn goes out onto the porch calls me into the house. Craig gives me a bunch of coins from the Middle East with oil rigs and Alladin lamps on them, tells me to give them to Shawn so he doesn't get mad at him.

I took off. What the hell am I supposed to do? Shawn's solution is to go punch him in the face. Yeah not such a good idea but I'm not sure what I should do. I really don't want him bothering me anymore, he really crossed the line when he came to my house. Now I don't know how to handle it. I'm thinking of asking the Police for advice, not filing a report or anything but just asking what the hell I should do.

Any advice?

Friday, March 27, 2009

He is Amazing

Shawn is now 17 wks post-op, here are the stats:

Pre-transplant wt.167...PFT's ?21%
Post-op on discharge wt. 163
2 1/2 wks post-op...... 12/17 ....PFT's 49%
3 1/2 wks post-op ..... 12/24....PFT's 61%
5 wks post-op.....Jan 2-4......3 day stay due to low-level rejection
11 wks post-op.....Feb 12....scheduled bronch led to 4 day inpatient stay for surgical debridement and dilation.
13 1/2 wks post-op....March 2....scheduled surgical debridement and dilation (day surgery)

16wks post-op......March 19th...surgical debridement and dilation

17wks out he is 190+ lbs

He has a clinic appointment April 1st so I'm anxious to see what his PFT's will be and his weight. Pre-op appt April 3rd and they have scheduled him for surgical debridement and dilation for the wk of March 6th.

I have to speak with the surgeon, I mean how often is he going to have to have this done? When will he be all healed up? The surgeon said it's not a big deal, just more of a maitenence job.

Really I can't complain at all, I know the ordeals that most transplant recipients go through and I consider Shawn to be extremely fortunate.

He is amazing.

Wednesday, March 25, 2009

Step 1 sorting

Three jars of misc have to sort on white in the sunlight in order to see the subtle differences in color

After sorting for about an hour this is what I have
several shades of blue,old royal blue from old Milk of Magnesium bottles or new royal blue from newer wine bottles, seafoam greens, pale blues, sky blues and blue blues

Focus Focus Focus

Well I'm stumped today. Frustrated by my lack of focus. What am I doing? What is my purpose in life. How does one go about finding their purpose? how do commit to something? Rather why can't I commit to something?

I know the usual 'find what you love'

I love so many things, I love the ocean and the beach, I love people and helping them, I love to learn about alternatives...alternative thinking, medicine, nutrition, exercise. I love gardens and flowers, fruits and vegetables. I love creating and growing things, I love to nurture. I love to give people hope and to bring them joy. I love to write.

I love so many things and I know a little about a lot but not a lot about a little. I'm sort of 'Jack of all Trades' except in my mind. I am a quick study and am often frustrated that I don't know more about things that others seem to know about.

Today I can see I am trapped in my head. Shawn will tell me that it's alright, it's one day, but I don't like it.

How does someone sit down and complete a task? I have so many ideas in my head regarding my seaglass that I am overwhelmed by them. I come to a bump in the road and get discouraged I give up too easily. Instead of just finding the solution to the problem and remedying the situation I just wallow in it. What the hell is that about? I usually know what I need to do I just don't take the steps to do it.

Blah blah blah What a bitch session this has turned out to be.
I am squandering time and I hate that. I'm not engaged in life today. I'm just here.

Ugh..........not long ago these ruminations would have led me to thinking of going to sleep. Going to sleep in hopes that when I wake up everything would be crystal clear, an epiphany will be born and I will be alive again.

Now I know that sleep is not going to help. I know I have to work these things out, putting the pieces together like an intricate puzzle. Pull my fragmented mind together for the sake of living, engaging.
It's hard though.

Whatever the reasons my mind is not always looking out for my best interests and I have to be cognizant of that fact. My mind keeps me in the past and in the future but never in the present and that is how time slips away from me.

So right now I am going to try to reconnect with the present and stay in it. It's a lot harder than it sounds. My mind is very quick to wander away.

I am going to dump out a big jar of glass and sort through it, focusing on the feel of it, the textures, colors, shapes, imperfections and weight of each piece. Lucky for me my glass is sorted by color and usually even by age/thickness.

I am going to focus on making one thing. something small. earrings.
Yes earrings. I recently learned how to make my own "findings"...that's the metal part of the jewelery. So earrings it will be. Color. hmmmm? O.K. this could be a stumper. Blue. Blue because it is so gorgeous and it reminds me of the sky and the sea all at once. Blue because it is cool and calm, just like me. HA!

O.K. Blue earrings. Ready set go!

Thursday, March 19, 2009

All is well

Shawn is doing great!
He's home pigging out, making up for lost time.
He feels much better. He told me he went up and down our forty one steps four times and felt fine. No shortness of breath.
It's so amazing to me. It was only four months ago that he couldn't walk up with up FOUR steps on 5 liters of oxygen without gasping for air.
What a miracle.

His surgeon called me as soon as Shawn went into recovery to give me the details. There are still areas that continue to heal and slough off dead tissue which will need to be cleaned up, so he'll go back in another 2 weeks. Otherwise his lungs look great.

So all is well in my world, the sky did not fall.

Tomorrow morning I head back to Boston. Back to my home, my husband, my dgtr and my life. I can't wait. I can't wait because it's all wonderful, I am Blessed and I am grateful.

Wednesday, March 18, 2009


So yesterday Shawn sort of complained in a very casual manner that he was feeling a bit SOB, but mostly with exertion such as climbing two flights of stairs but not at rest. His O2 sats would drop to 89 but quickly climb back into the high 90's w/ rest. He said he just felt tight, not his whole chest just inhaling he said he felt like he was trying to force the air in, his lungs were expanding without any discomfort but he felt like it was hard to get the air to them.

Now Shawn has twice been to the OR for what the surgeon refers to as debridement and dilation and we knew he would be going back in but with me having plans to be in Florida the surgeon said they could go three weeks instead of two UNLESS Shawn ran into any trouble. His surgeon explained that after applying the electrical current to the sloughing areas in the main bronchi/hook up it would shrink up as it healed and that is why they also dilated, an attempt to counteract the tightening.

Well two weeks would have been right on the money. He called his team this morning and the surgeon wants him in the OR tomorrow.

When Shawn called and told me I had a wide mix of emotions, I felt guilt immediately for being here and for having them delay it to three weeks to begin with. I felt helpless because I am here and he is there and there is no possible way for me to get back to Boston before tomorrow morning. I felt afraid...what if something happened? I felt mad at my Mother because she pushed for me to come down here when I knew he wasn't stable enough. I felt like I really let Shawn down.

Then I stopped myself, (not before crying a little with frustration) I have no control over this. I can't change it, no matter what and this is what is best for Shawn.

I read a book when I was going through alot and really fighting for my own sanity, by Ekhardt Tolland called "The Power of Now". I collected many little gems from that book and it has helped me through many hard times. One thing was that if you find yourself in circumstances that suck, think and act as if you had chosen it for yourself, not that it was thrust upon you.

So how about things were scheduled this way from beginning. Shawn is comfortable with the procedure and always feels better afterward. We have complete trust in his team and faith in God. Arrangements were made for Sara Lou to have a sleepover, my Brother Peter took the day off to drive Shawn and provide moral support. I am enjoying the last days of my vacation before driving back up to Boston on Friday and by the time I get back Shawn will be feeling great and all will be right with the world.

I've talked with Shawn and I'm proud of him for doing this, for taking responsibility for his care I'm proud that he is doing this even though he would have preferred to wait.
He's alright with the decision and the way things are right now. He knows he will feel better and he's glad he's having it done. His big thing was he didn't want me to worry or be upset. He is such an incredible guy.

So it's o.k. there is no emergency, Shawn is fine and his team is acting appropriately.
I'm at Peace with it. I really am.

Tuesday, March 17, 2009

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.


Sunday, March 15, 2009

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.

Monday, March 9, 2009


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.

Friday, March 6, 2009

Out of sorts

Just out of sorts. I can't put my finger on it but it drives me nuts.

I feel tired and unfocused.
I have to remember to talk myself out of these moods. It works pretty well although I will catch myself sliding back into the gray and have to fight it off.

I feel lost.

I recently signed up for facebook after much nagging from a friend of mine. It's alot of fun catching up with people who I haven't run across in years. Shawn has a facebook too so it's fun for us both, sometimes he hijacks mine and writes ridiculous things and vice versa.

Anyway the thing is that Shawn had ALOT of female friends as a child and they are coming out of the woodwork. Then there is the girlfriends of those girls and they all seem to think Shawn is a celebrity or something.
I really had no problem with it except some of them are a little too agressive in my opinion. They send messages through his inbox, asking more personal information and I think it's crossing the line.

A few weeks ago when Shawn went in for his first touch up, while I was waiting for him to come out of surgery his cell rings, it's this girl he grew up with..she said she hadn't heard from him and was worried, she knew he was having the bronch the day before. She had even called his fucking grandmother to find out what was up.
He had given her his number, which I knew and was irritated about to begin with. Believe me this girl is no threat to me on a physical level, she is not anything Shawn would think was attractive but it's the fucking ego stroking that I'm pissed about.
Oh poor Shawn, Oh you've been through so much...Oh blah blah blah...Which that is fine he can't control what they say but don't continue the conversation don't feed it.
He will have three or four of these conversations going on at once it's ridiculous.

Am I just and insecure twit, threatened by the fact that he is healthy and doesn't "need" me anymore?

I try and gauge my reaction by saying what's good for the goose is good for the gander, would it be alright for me to entertain old "male" friends of mine? Of course guys don't blather on incessantly like women do but anyway.

So now I have this crappy ugly feeling in me. I'm not young enough, thin enough, pretty enough, and on and on.

Thursday, March 5, 2009

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.

Monday, March 2, 2009

Shawn's Shaggy Airway

Shawn went in for surgery today, the plan was to keep him overnight but he did awesome so Yay he got to come home.

I am so happy with his team, they are incredible.

Ten years ago when I started trying to get a diagnosis for Shawn I developed a deep sense of animosity and distrust toward the entire medical world. This was before I was a nurse, I became a nurse because no-one would listen to me. Amazing that two initials after my name and "Poof" what I say matters.
Anyway the point I was getting at is I was trying so hard to find what I felt was the best care for Shawn, I wanted someone to take care of him the way I did. I wanted a medical team that listened, considered Shawn as a person in their decisions, I wanted a staff that washed their hands, that checked meds before walking into his room, doctors that were passionate about the care they provided, the lives they were messing with.
I wanted the best for him.

Well I haven't been everywhere in the world or the country for that matter but I'm so thankful that Shawn has the team at Brigham and Womens Hospital. We were at MGH, not the place for us. Ackkk

So anyway happy the pieces have fallen into place and I am completely at ease with B&W.
I never stressed even when he was going in for his transplant. I feel like he is getting the best care that they can give.


So Shawn is in surgery....we braved the storm and actually got here early. Shawn was all checked in and off to the OR by 9ish, supposedly the procedure will be an hour but I don't usually count on it.

They have this great family library area while you wait, computers, tables, couches, recliners and free coffee, juice, bagels, danishes and the like. It's really a very pleasant environment.
the staff is great too. Very friendly but not overbearing, they do a great job of keeping everyone calm and posted.

So here I am Ha! I should have brought some glass to work on!

Sunday, March 1, 2009


I'm not sure if it's the weather or the chg of seasons coming on or the fact that Shawn has to back in for surgery tomorrow but whatever it is I am totally out of sorts.

I'm frustrated with myself for not getting my seaglass shit together.
I have some really beautiful pieces that I've made that I haven't posted because I can't get a picture that I'm happy with.
I don't want to post pieces because I need supplies, cording, clasps etc so I can actually deliver the piece. I'm not ordering supplies because I am overwhelmed by the choices, afraid I will order the wrong stuff. Ughhh. I am overwhelmed by the amount of glass I have collected but I can't help myself it's beautiful...

Oh Yeah I want to post a picture of something I found on the beach while carousing with Shawn.
There are a couple of things that make this a totally amazing find and frankly I'm glad Shawn was there with me because it's unbelievable that something so tiny jumped up at me.
What makes it special?

1) the is the holy grail of seaglass
2)the is a faceted square piece
3) history....may have been in a ring
4) the is tiny and the fact that it somehow made it's way out of the ocean and up onto the beach to me is incredible
5) what is it? glass, a ruby, a garnet? who knows?

I love it! Check it out:

Ugggggh I hate trying to put pictures up !!!!!! They never show up where I want them to!