Tina's river

Tired

2010-10-12T14:41:00.002-04:00

So tired of being tired. So tired of dragging myself through my days. I feel muted. I feel buried. It is a constant daily struggle to pull myself out my head enough to function, to complete the bare minimum.

Well Shawn just came home for a minute and that's all it takes. I told him how I was feeling and he instantly soothed me. Pointed out some obvious things, 1) I am clinically depressed, diagnosed bi-polar and have been non-medicated for over a year. 2) We have significant stressors in our lives 3) I have PMS.

He told me that he felt I was doing fine, that I am harder on myself than I should be, and that he supports any decision that I make regarding medication but that I have to be willing to accept myself and all of my ups and downs, my cycles. He fully accepts them as part of who I am and as long as I am not going dangerously low he tries to be gentle with me and patiently waits for me to pull out of it. He knows the good days follow the bad ones.
He wants me to invest more in myself, he wants me to return to the gym for the classes that I loved and felt great after attending. He believes that committing to myself, getting on a schedule and spending time with friends in a healthy way will help. He's right.

He also gave me $50 to buy myself a sweater for a day trip I am going on with a dear friend later this week. A friend who I feel like I let down a lot. Because I can't get out of my own way most days. Although I have noticed that if I actually make the plans I do follow through. (Note to self~ get a personal calender and fill it with lunches, coffee, tea, walks, shopping trips, etc)

*I know $50 doesn't seem like a lot to most but for me to spend $50 on myself on a sweater that I actually need makes me feel weird. I hate shopping I hate trying things on. But this time, despite my anxiety I have to buy something because I have nothing left for clothes.

He left me money for groceries and the sweetest kiss.

Oi

Happy Independence Day !

2010-07-03T18:52:00.002-04:00

So I haven't posted in a couple of months. Let's see Shawn only had 4 photophoresis treatments due to a glitch in insurance and at first this was a maddening turn of events but things have turned out quite nicely.
Shawn's FEV1% has continued to improve with only the Azithromycin, he hovered in the 40's for over a year and now BAM, 50 and last checked he was at 55%. He feels great and looks even better.
We just returned from Hawaii. How amazing and grateful I was everyday looking over at him and realizing how lucky I am. How blessed we are. How close I have been to losing him and how happy I am to have him in my life.
He drives me crazy nearly everyday but that's Shawn and I love him.

Drifting

2010-05-05T13:11:00.002-04:00

Yup, drifting. Still searching for my purpose in this life. Not to say I am not finding joy in living because I am but I want to be fully engaged and I am having a hard time making it to that point. My mind is still my biggest obstacle. Some days are certainly better than others but man I want clarity. I want to live everyday, I want to make an impact and I feel like I am struggling. Swimming upstream.

So Shawn. Let's see there is so much going on with him, so much that I don't fully understand and so much that I have to learn about. I have questions and lots of them.
The treatment he has started, two weeks ago, he has had four sessions of photophoresis seems to be working! Shawn feels like it is, he said he feels more open, that he can breathe deeper and easier. Now this week he has not been scheduled for treatment and I'm not sure what is going on. So I've made some calls, left messages waiting to hear back. Don't drop the ball here, this is my husband's life you're dicking around with. I'll be aggressive as I have to be.

Then there is his pathology reports, which I have obtained a copy of. Some interesting and disturbing findings. Things that again I don't fully understand but I need answers. I'm not a surgeon, a pathologist, an expert of any kind but I am a wife and I need help. So I am hoping that my faith in our team is not misplaced. Oh Lord help them if it is.

Some positive things......This weekend we were blessed and honored to celebrate the life of Paul.
Paul was an amazing person, I just wish I had known him in his hey-day! Paying our respects to his wonderful family and his friends who traveled to Boston from all over the country was an experience I'll not soon forget. Having so many CF'ers in one place was surreal and an inspiration. So funny because Paul would have forbid it! I remember telling him one night that we were going to meet a CF'er, a mutual friend that I had met on-line in person and he wasn't too happy about it. I told him we'd be outside, by the ocean having ice-cream so surely that would be safe and he said "What matters is which way the wind is blowing" Ughhhh! I loved Paul. When Shawn was so very sick he was there for me, to talk me down, to reassure me and I'll forever be grateful for his words and kindness. In one of our last e-mails we were talking about rejection and he said "It's the dicking around that'll kill you" so off I go to kick some ass because the dicking around is not going to get my Baby! Thanks Paul

Rejection

2010-03-30T11:09:00.002-04:00

Need I say more?

Agoramania

2010-03-01T11:50:00.002-05:00

Ugh Agoraphobia I hate you. So here I am killing time but at least hoping this will serve to be cathartic in some way. I have three enormous bags of laundry, literally every article of clothing I own, every towel and nearly every pair of socks is crammed into those three bags. Oh yeah plus a basket of linens. It got out of control because I have started with an aversion to the basement, where our coin-op washer and dryer stands. For several reasons I hate going down there. One it's wet, there are huge puddles that have risen up through the floor and standing water in your basement is just gross. Two, the washer doesn't spin out properly, for $1.25 your clothes come out linty and wet. Three, the dryer takes two cyles @ $1.25 per pop, to thoroughly dry your wet laundry. Four, we have to share the machines with our downstairs neighbor, who thankfully doesn't generate much laundry but hangs her old lady unmentionables down there to dry. Eww.
I feel strangely voyeuristic when I see them displayed on her rack. Gross again.

Plus I have this aversion to talking to anyone. When I am forced to I think I do pretty well, nod and smile, chit chat and escape but my insides are churning and my palms are sweating. I dread running into someone in the hall. Except there is no-one except her and she's rarely home.

I am horrified of talking to anyone at the Laundromat. I once picked up a psycho registered sexual offender, stalker, obscene phone call making exhibitionist. Who stole my underwear. I haven't been to a laundromat since and that was in 1999. Eleven years ago. Yeesh.

I attract psycho's everywhere that I go. Yes I do see the world as an unsafe place. I know. I know that it is not a healthy perspective or belief but it has proven itself to be true on many occasions and I hate that feeling of something going awry and getting dangerous.

Ack.

So guess what? I'm going anyway. My trunk is packed, the detergent is in there, Liz is picking up Sara and we have no clothes left. Here goes nothing!

Up and down

2010-02-23T12:39:00.002-05:00

Good news first. Shawn had a bronch and biopsy last week and yay his biopsy came back negative for rejection. Whew huge sigh of relief.
However there was some junk in there which was cultured and something suspicious showed up. Now I don't have the details just what Shawn relayed to me, they called him and are having him come in for some blood work because they are looking for a "mold". He is scheduled for the repair of two large hernias next week and I'm not sure if that is still on or not. I guess we'll find out tomorrow. Ack. Oh to have a boring month without a hospitalization.

He looks great, feels pretty darn good, nothing is stopping him but let's hope and pray that this "mold" or whatever the hell they find is easily nixed!

What a difference a day makes

2010-01-21T21:19:00.002-05:00

First thanks to my ladies for the encouragement. So weird how just knowing that you girls feel for me is so reassuring. Am I a dork? Who cares....thanks for being there.

So today Shawn got up drove Sara Lou to school then came home with bags from Marshalls. He bought me some perfect work-out clothes and then took me to his gym. I have the most enormous gym phobia, well I have a "me" phobia.

But it was good, really good. I walked on the treadmill, not far...2 and 1/2 miles at 3.8 mph....for me was fun but I sweated my ass off because I kept my sweatshirt on. Hmmm won't do that tomorrow, I see why they are called "sweat" shirts. Gross. Then Shawn took me around to a few machines and we exercised together, he set the machines up for me and counted off my sets. It was so loving. I felt so proud to be with him. He was so nurturing.
He was so lovely that I totally forgot about my "me" phobia.

So anyway it was great and i'm so happy that we went and I am totally looking forward to going tomorrow. I can't believe I said that.

The rest of my day was good, productive.

Maybe the "fix", maybe my "fix" is the gym. I hope so.

Thanks and Good Night !!

I got nothing...

2010-01-20T18:26:00.002-05:00

I feel so negligent. Just cruising through some of the blogs that I used to read on an almost daily basis and realize that I am so out of touch. Out of touch with everything and nearly everyone.

I used to love blogging and commenting on the forums but I just don't seem to have it in me. I got nothing. I feel pretty empty. I feel like I am keeping my head above the water.

I'm not jumping off of any bridges or anything just feeling muted. I hate it. I want to be engaged. Engaged in life.

My husband is healthy, feeling good. My daughter is thriving and I am so amazed and proud of the wonderful young woman she is becoming.

My father is dying and I am drifting. Ugh

One official year, What I remember....

2009-11-28T13:57:00.004-05:00

So here we are one year ago today my husband stopped struggling to breathe.

In the wee hours on November 28th 2008 a strangers lungs began feeding my husbands blood oxygen , perfusing his resting body with life. Oxygen saturated blood, thoroughly saturated food.

My first post-transplant memory is of me being roused from a peaceful slumber by the sensation of my big toe being tugged on. I opened my eyes, it was Dr. Camp's face. I remember his face to be kind and with a distinct look of satisfaction on it. I remember him saying that Shawn was good, stable, he was being cleaned up and for me to wake up and he'd be back out to talk to me. There may have been more to that report but that's all I remember.

I don't think I was ever afraid. Now granted there was a wee bit of Ativan involved, on my part but really I was never afraid. I've been afraid since but not then.

Not sure if I posted or what I'm sure I notified people but I'll be damned if I can remember a single call. I was with Mac. Oh he was so wonderful, I won't ever be able to thank him enough for being with me. I love my family don't get me wrong but Mac was perfect for the job. He's huge and calm and he loves Shawn. I felt safe, calm and comforted.

Next I remember it was like three hours later when Dr. Camp came back out, he told me Shawn was sick like he should be or that's what I heard. He was stable, he was pink, he had started up after bi pass without a problem, I should expect to see a lump in the middle of his chest, because they had to pull some tissue in there to cover his wires, Shawn was so thin there. He was doing well. Shawn's old lungs lungs were a disaster and a bitch to scrape out of there. He was full of adhesion. I remember him saying that in 15 yrs they were some of the worst.

I was so happy. When they let me in to see him, I can't remember if I was with anyone I just remember how beautiful and pink he was. Oh it was the most beautiful thing to see, even now a year later when I think of how peaceful his body looked and so healthy he was glowing it brings me to tears.

I think it was a few minutes before I began to notice all of the equipment, the machines, drains, bags, tubes, IV pumps, the vent, the monitors seemed to be everywhere. Then the sounds. All of them were there but they weren't a part of my world. He looked comfortable, like he was just a healthy guy in a movie portraying a transplant recipient.

I remember them allowing him to wake up a little and then I do remember crying a little. I remember him asking me with his eyes and his hand gesture if he was done. He had restraints on. He was rolling his eyes at them. He was so funny and I was so happy he was o.k. and I was so thankful

I am so thankful.

Get Moving!!

2009-11-19T11:48:00.002-05:00

I was going to post but I dare not. Certain friends of mine are cracking the cyber-whip on me and I have to get packing!

Busy busy busy makes for crazy crazy crazy

2009-11-16T10:06:00.002-05:00

Well super busy but amazingly enough feeling pretty sane too.
Shawn's big "1 Year Transplant Anniversary" party is this weekend, so excited and totally not prepared. I feel like I have to get one thing done before the other. Sara Lou's party was this past weekend and we are moving hopefully Wednesday. So once the move is under way I can focus on the party preparations for Saturday. Oh yeah and my Dad who is terminal is coming up from Virginia on Thursday.

This place will be empty except for party paraphernalia. Ought to be interesting.

Aside from that chaos I can't help thinking about how our life was just a year ago. Everything exciting was happening in November. I am so grateful.

"Holding On"

2009-10-25T11:26:00.004-04:00

So I've been laid up for a couple of days with a stupid sprained ankle. With all the time to sit and be forced to be still I had a hard time knowing what to do with myself. I came to realize that perhaps my mind had been sneaky and had gotten a bit busy as of late. I thought I was pretty "together" but can see that I was just busy. My head had gotten racy and wild. I wasn't aware of it because I was One; keeping my body as busy as my mind and Two; Because my head wasn't full of the usual negative crazy chatter I thought it was quiet.

Now that I was forced to make my body still...I can see my mind was running full speed ahead, not calm and zenny at all.

So I stated doing things that zone me...I started crocheting but got a bit frustrated with the crappy yarn I was using so although I enjoy it I was feeling irritated instead of calm.

So I returned to what I love....my glass. Ahhhhh how I enjoy working with it, sorting through the thousands of pieces for just the right colors, the hues, the shapes, sizes, textures, the age I love it.

I have gotten away from making "jewelery" maybe because Shawn does it, maybe because I am bored with the style and technique, maybe because I want something more. I want my glass to speak.

I have been working on larger projects, mosaics if you will. I'm not sure what you call them.
I finished a large piece that I have been working on and really love the look of it. So I decided to work on more large scale pieces and not apologize for it. Just embrace the beauty of all of those tiny pieces together.

A couple of months ago I sketched out a picture, very rough but it speaks to me. I love it. I love what it says and what it promises. I titled it immediately ..."Holding On"... there was no thinking about it. The title came as naturally as the sketch.

Weeks ago I prepared the glass sheet which was to be my canvas. I prepped it, taped it off, bumpered my sharp corners and left it to set up. Waited for when I was feeling inspired and *poof* sprained ankle and forced rest!

So last night I started actually putting the piece together, I love it. I worked on it for about 5 or 6 hours and it's form is emerging and I am in love with it.
These pieces especially one of this size take hours upon hours to complete, I'd guess a good 40-50 hours maybe more. There are thousands of tiny pieces of glass, I do not grout so the pieces have to really lock together like a puzzle, the shades, shapes have to be just right, everything works together and I think the result is wonderful.

SO last night I huddled over the glass, turning and shifting and not being able to get my ankle in a comfortable position but I didn't care..... my mind was quiet.

Boys of Summer

2009-10-16T09:45:00.002-04:00

Ahh my all time favorite song and seems perfect for a day like today.

Here I sit at my beautiful desk looking out to the ocean and it is breathtaking. The water is rolling in tremendous easy swells, crashing in the distance against Egg Rock, the sky is just bright enough to see the hundreds of color variations in the ocean below. I love it.

I'll miss living here. I do love it. What I love more is my family. My husband stubborn and strong beyond belief, my wonderful daughter beautiful, kind, creative, expressive and so amazingly resilient. I love them so much more than any place or any thing. I could be happy with them anywhere.

So this morning I am busying myself, I have a house to clean and pack, errands to run and parties to plan. Today I am waiting to hear if we get the apartment down the street from here.

Last year this time, our lives were soooooooo very different. I hold onto the same Faith that got me through those tough times. I have Faith that God is laying things out for me, watching and loving me. So maybe we'll get this place and maybe we won't but whatever the case may be we'll be o.k.

No scratch that....we'll be living, a wonderful, happy, healthy life and we'll be in love.

Amen

What the ??????????

2009-09-29T08:05:00.002-04:00

So last night at like 10:30 Shawn see's on his cell he missed a call. It's J our landlord. (Who is actually the dgtr of the owner) She tells Shawn whatever. I was sitting in the living room putting finishing touches on a seaglass mosaic and he's standing there doing alot of "what?", "why" and "when". I knew something was wrong. You could feel the change in the air. He hung up came over and delivered the news. "We have to move"
I called her right back and asked her what was going on and she said the same. She refused to give and explanation, said that it was NOT personal, strictly business. I said what business? You want more money? Nope. I said I felt like we deserved the courtesy of at least an explanation. She refused asked me to respect her families privacy. Oh fuck you.

I know that it has to be her moving back here. We never met her, she was already out in California with her parents. She is a firefighter here in Swampscott, her husband is in the service and is overseas. I just think that she is moving back and just won't say so.

What can I do? I'm devastated. Anyone who knows me knows we LOVE this place. Anyone who knows this place KNOW why.

I'm going to try very hard to make this o.k. I can't handle another big NEGATIVE in my life. I am supposed to move forward as if I chose this path.

OK. I am grateful that we have had this beautiful place to live for the past year, that Shawn has had a safe clean environment in which to recover in, we have all made good friends here and loads of good memories.

But God damn if I knew her plan was to come back in a year I never would have signed on. Grrrrr.

Ugh. I am pretty worried about Shawn today, he is DEVASTATED. There is nothing worse than seeing that look on his face.
But alas at least I am looking at a healthy pink gorgeous alive face,right?

So...right this minute I am thankful for this amazing wonderful healthy and happy year we have had. I look forward to finding someplace even more perfect!!!!!

feeling good

2009-09-21T12:49:00.002-04:00

So here I am today feeling better. I have kicked my Wellbutrin to the curb for now along with all other prescription meds. I have returned to the basics. I'm back to good old St. Johns Wort. Today marks a full week on it and I feel oh so much better. Even with the hormonal swing of my period I've done pretty good, if I do say so myself.

My Father is sick. My brother went down to see him last week and reports back that he is weaker and even more frail looking than he was a few months ago. Peter said Dad was super short of breath and coughing alot. Deja vu perhaps. Eek. He was transfused with 3 units packed red blood cells so that should help. I'm working up my courage to call him. I have to see him soon. I hate the idea of knowing that he is sick. He is. Cancer what a fucker. Considering that he was diagnosed last October primary site lung with mets to the brain, liver, groin he is lucky to be here.
I wish he would come back home. What is he doing down there? What's going to happen when he is too sick to take care of himself?

My husband is staying with his Uncle Carl for a couple of days while his wife is away on business. Uncle Carl just had brain surgery last week to remove a tumor, he's doing great, looks a bit like a screwy baseball but amazing that he's up and around already. That poor bastard has been through two very nasty bouts with cancer of the tongue and throat already. Time for a break.

Shawn is doing awesome. not listening to me much but I guess that is nothing new.

I love the Fall my favorite season I think. November is our lucky month!!! Sara Lou and Shawn both born in November and of course his transplant on Thanksgiving. So very much to be thankful for.

Slooooow Dooooown

2009-09-11T14:55:00.002-04:00

Well this is a super quick post to say that I had about ten full days where my head was quiet. So quiet and so happy. Then I sort of started sliding down. I'm up today, not quiet but not all bad either. I am hungry and tired and restless and disorganized. I feel fat

A me post

2009-08-17T11:26:00.004-04:00

Well after reading some of my fellow bloggers blogs I feel like I have been slacking.

To cut myself some slack I'll say that I believe part of the problem is that I try to incorporate too many facets of my life into one blog. Is that possible? I don't know.

I get so wrapped up in my husband that I forget that sometimes it's o.k. for me to be about me.
I forget that I am a separate person. I am more than his nurse, his wife, his laundress, his cook, his lover. I am me too.

One of my fellow bloggers and fellow wife to a CF'er has two blogs. One for her CF life and one for her. I really understand why now.

So although I'm not ready to start yet another blog I'll settle for trying to balance it out.

Today it's about me.

I have been making a VERY conscious EFFORT to be more about me but I have to tell you it's fucking hard.
It's hard. Harder than you can imagine.
My head is not always kind to me, it has been my enemy as much as it has been my friend but the distraction of him also let me blame it on him.

I fell apart because of him. I fragmented into a million tiny pieces because of him. I lost myself because of him. I am the way I am because of him. Right? After-all the stress of having a constantly dying partner is enough to drive anyone crazy.

But for me it's just not true. Yes, yes, yes having that stress maybe exacerbated my own illness but my illness is my own.

Now that I think about it I really held it together pretty well all things considered. We both did.

Funny how entangled our beings became for me. He's well now but I am still struggling in my mind.
I don't spend my days crying like I used to when he was sick sick sick but I see now that my mind is still going to try and make me feel like shit and I am fighting it everyday.

I am doing things on my own and it makes me feel so proud of myself. I have spent my life afraid of so much. Afraid of being unwanted, unloved, afraid of being stolen, killed, lost. Afraid of nothing and everything all at once. Man how unkind my mind has been to me.

But how wonderful it has been as well. Two minds. Weird I never really looked at it like that but that's it. Two minds. Two minds. Hmm I think I've had an epiphany of sorts. yuck what does that mean two minds? I don't know and right this second I am choosing to tell my crappy mind to shut the fuck up. Oh it's on, man is it ever. I'm going upstairs and I am going to kick my crazy minds ass. I am going to sit at my beautiful desk, look out the window at my beautiful view, and let my creative juices flow. I am going to create something beautiful. I am going to do it without the input from my crappy mind. Here goes nothing!!!!!!!!!!!!!!!!!!!

Much better

2009-08-04T13:31:00.002-04:00

Just a quick update to let anyone who reads this know that I have not killed my husband and things are beautiful once again. Yesterday we went for lunch and late last night we took a ride out to the Marblehead Lighthouse and had a long talk. He agreed that he has been a bit self-centered and is going to work on that. I agreed that my insecurity is rearing it's ugly head. I didn't budge on some things. I refuse to be treated crappy.

So today is gorgeous out, I feel awesome. All is well with my world.

Late late tonight we are heading to Buffalo to pick up the Trans Am! Even I'm getting excited. I also heard through the grapevine that there may be a jet-ski in our future. I am getting a Kayak before he gets another toy though!!!

He's changed ..........* edited a couple of hours later

2009-08-03T05:00:00.004-04:00

I feel like Shawn and I are growing apart. There I've said it. I hate it, it breaks my heart but he's changed. I keep thinking it's an adjustment to him not "needing" me anymore but it's more than that. I'm not number one in Shawn's life anymore and neither is Sara. Shawn is number one.
When push comes to shove his happiness is what matters to him. I think he loves me but not the way he used to.
Now Shawn is pursuing his own life. He doesn't agree with me. He thinks it's not true and that Sara and I are just being overly sensitive. I am basing my feelings on what he does not what he says.

Watching Shawn be able to breathe again has been the most wonderful gift in the world. Shawn being able to be a regular guy in so many ways makes me happier than you could ever know. I love that he can DO everything now, shoot the shit, play ball, ride his bike, go on outings with his buddies, talk shop or whatever the hell they talk about but ugh.

I tell people that we have done more this summer than we have done in years and it is totally true, we are making up for stolen time. Unfortunately Shawn is also trying to cram years worth of missed out guy stuff into months. I have been totally supportive in him going out with the guys but he's gone overboard. At every opportunity he takes off on his bike to go for rides, he spent the day in Laconia during bike week, he goes to more fucking car shows with the guys than I ever knew existed, he hangs out at his buddies shop everyday. He tells me he's working on his truck and I know he does do work on it. He's been able to do alot of repair work to his truck there that would have cost us a fortune if he had to send it out. I also know that alot of the time he spends down there is just getting away from us.

Everything sort of came to a head over the weekend. Friday afternoon he called to tell me he was at the shop working on his truck which was fine. I don't call him or nag him. He came home 5 hrs later hammered. Apparently someone who runs a "casino night" outfit brought over a poker table, chips, cards etc along with two beer balls (whatever the hell that is). I was a upset that he had been gone, I was upset that he never called to say "Look, the guys are playing some cards, it's Friday night do you mind if I hang out?" That's all I needed. I would have felt like he took me into consideration, I would have without a doubt said yes. But he didn't as far as I knew he was "working on the truck". Sat morning he took off to a car show with his friend, D. Sara and I went out for breakfast, then we picked up D's daughter and I dropped them both off at a birthday party. Mind you if I had not offered to take his dgtr to the party he would not have been able to go to the car show. So even though I was pissed about Friday night I still wanted him to go. I didn't want to hold him back. He went. We had a clambake to go to at 6. The guys were running late. D agreed to pick up the girls and the drop them off here to hang out. Which he did. Probably more to get Shawn out of any hot water than to do me a favor. We went to the clambake, didn't really hang out together, went our seperate ways mingling. Which I didn't mind. I don't need him to hold my hand, I felt good, I knew a lot of the people there so it was not a problem. At some point he mentioned that there was yet another car show he wanted to go to with D but it was Sunday morning. He said they would be going early and that it would not be a problem. (Mind you this was a show that I had looked up on the net months ago but at that time he blew it off) Then we came home to a block party. Again we sort of did our own thing but it was fine, everyone had a good time even though the cops were there five times for noise issues. There was a live band.
I chatted with everyone, had God only knows how many Margaritas and Shawn put me to bed at the end of the night. It was a good night.

Sunday was my Nana's 88th birthday we were supposed to drive up to NH to celebrate and be there by 2. Shawn woke up and said he was going to the show with D, now this was at maybe 9ish. I said I didn't think he would have enough time, he said he did and promised to be home by 12 so we could leave for NH by 1. Well at 12 he called Sara Lou to tell her he was on his way home. I waited until 1:30 and left for NH.

He said they got there late and he wanted to walk through and see everything and then they ran into a couple of guys and got to chatting. He says he left the show at 12:30 but ran into traffic on the way home.

Not that he had lost track of time. He just didn't give a fuck. He was enjoying himself and that was that. Fuck you Tina

*edit* Maybe I'm wrong. I hope I am wrong. Regardless of whether I am right or wrong I love him. I love him with all of my heart and soul. I don't want this to get out of hand. I want to find the balance and I'm hoping that Shawn does too. I'm hurt, I'm confused and most of all right now I'm tired. I know when I am tired I don't think as clearly as I should so I'm going off to bed.

On a happy note I called my pharm and asked her to call me in some Ativan. I'm smoking butts secretly and it's gross and stinky, and bad for me, not to mention expensive. Thankfully this morning I will pick up my script. Well I'm thinking my husband will be waiting in the Walgreens parking lot for the doors to open. Ugh

P.S. I am aware that I am sending Shawn mixed messages and I'm hoping we can work this out. God I love that man.

P.P.S. I REALLY think that this sort of shift in the realtionship should be addressed or at least mentioned in the pre-transplant support groups. WTF I have been blindsided by it.

Getting it together....trying to

2009-07-28T22:40:00.003-04:00

Mental health check. Still having a really hard time staying focused at all. Agitation sometimes getting the best of me. I tried a new med, blah. Definitely exacerbated symptoms. Back to the drawing board. I had a very productive and destructive manic phase. Unfortunately even my swings are so sudden and frequent I can't take full advantage of the tiny window of good energy. Grrr.

Life goes on. During my upswing I spent more than I should have and blew our budget for the month. Shawn is none too happy. I even bounced a check!!!! We have so much going on too. Really we've been so active socially I'm feeling a little burnt out. We went out last Fri to a cook out, Saturday our niece slept over, Sunday we had Shawn's brother and his wife over for some nice beach time and Sunday evening we had company again. This weekend Sara has a birthday party from 2-5, then we have a clambake that is running from 5-10, we also have a block party that same night that is running 6-11. Sunday is my Nana's 88th birthday so we'll be going up to NH. Wednesday we are leaving for Buffalo to meet up with our friends who are from Florida but will be in NY for a family wedding. The third week of August I think we are going to Virginia to visit my Dad and do some camping. Crazy busy.

I'm trying to get my seaglass out and about. I keep creating things and my home is being overrun. I'm learning new techniques and really enjoy just working with my hands. The glass is so tactile I love it. I'm very pleased with the feedback I have been getting.

Shawn is doing great, feels good is getting plenty of fresh air and exercise. Sara and I really take advantage of living on a beach. Almost everyday we meander over at some point and take a dip. The two of us in our noodle chairs just floating and chatting. It's the best.

I've accomplished something

2009-07-08T11:35:00.005-04:00

OK so yesterday I had a kick ass day and completed two pendants that I have been working on. Well maybe "working on" isn't exactly accurate, more like agonizing over. Sometimes I find a piece of sea-pottery that just calls to me and then I have to decide what to do with it, usually it sits in my "special" tray and I look at it, stare at it and wait for something to inspire me. Well yesterday it came to me. The first piece is for someone very special and someone very special to her commissioned it. I will be making a coordinating piece for "him" as well. I am very excited to send him a picture of it, hope he approves and likes it. If not it's alright because frankly I love it and would really like to keep it for myself, Muwahahhaha

The second piece I call "Old Souls" the sea-pottery is very old, well over 100yrs and I love love love the colors, the haggard used look of it and the pattern, the small wheel to me represents the idea of a second chance, always a new day, a circle of time.

Both pieces are done with Sterling Silver. Actually not my favorite metal because it tarnishes. With a bit of care it stays shiny and brand new looking.

I threw these shots in because I think it's difficult to judge the scale unless you see it on a body. Most artisans will provide the dimensions of a piece but I can never wrap my mind around it unless I actually see it on a body.

I want a new drug, I got one.

2009-07-01T13:24:00.003-04:00

Alright now that I dicked around with the font for ten minutes and still haven't got the one I wanted I have a couple of things to get down here in my ever faithful blog.
.
So yeah the title is "I want a new drug" for all of you whipper snappers it's the title of a "Huey Lewis and The News" song. Yikes Huey Lewis what a name. Ah the 80's so good and so bad, but I digress.
(surprise)

Well I have been having a hard time pulling myself together for the last couple of months. Yes I have good minutes, hours but rarely whole days and it is frustrating to me because I feel like it holds me down. It's alot more than being able to get and keep my shit together. It's the constant banter in my mind that is the most difficult to deal with. A constant barrage of intrusive thoughts, mostly negative in one way or another and always focused on me and my perceived shortcomings.
I was going to try and list some of the stuff racing in my head but when I started to listen to the shit it got so loud and frenzied that I couldn't pull things apart. Everything jumbled together in one big spinning mass of fragments. So forget it.

The point was that I really was beginning to resent my own mind and I wanted to be free from it for just a bit, just a little break, just a little quiet. Now there are many drugs that will do that for me but most are eventually counter productive. Short term fantastic but no good for everyday life. I can't go around ripping rails or tweaked all of the time. I suppose I could but I've been there, not only is it expensive but dangerous and not the example I want to set either.

I already feel guilty that I have to be on meds to begin with. I feel like I am sending the message that there is always a pill for every occasion. Well anyhoo I finally went to see my pharmacologist (who I hate, not really her but what she represents to me) and we started a new med. Ugh I hate mood stabilizers, I feel like they are for the weakest of the weak and the most cuckoo. Shame on me for being a mental illness snob.
I've been on them in the past, I stopped my previous one in January after determining I was cured. After-all now that Shawn has his new lungs I should be better too, right.

O.K. so here's the gig. I am determined. This morning I got up, took my meds and took my dog for a walk (I bought a designated walking outfit yesterday because 'what to wear' is a huge roadblock for me). It's 2 p.m. I have not eaten yet but I will.

Rambling I know but sometimes these posts are just my thinking out loud and not nessesarily with an audience in mind.

It's raining, blah

Thanks Ladies!

2009-06-26T15:12:00.003-04:00

Thanks for the positive reinforcement. I doubt myself all of the time, I am always wondering "Am I crazy?" "Am I overreacting? " "Am I irrational, in denial, foolish and naive?"
Part of who I am is a jumble of diagnosis, mood disorder, bi-polar, ADHD, and some other crap so o.k. I accept that sometimes the way I conduct my life doesn't make sense to other people but it works. It works for us right now.

I am trying to re-gain my confidence, I am desperate for stability in our lives.

Living for so long in a constant state of crisis has left me shellshocked somewhat.
But I think in a good way. Everything is stripped away from you, everything just falls away. Well at least it did for us. Nothing but loving each other was important anymore.
We lost everything that we had worked VERY hard for.
I am so much happier for it and sometimes people don't understand how we can be happy. Satisfied with what we have. I feel like we have everything. I don't mind living in a more stripped down manner.

Mostly I want to be carefree. I want to hang on to the "knowing what is really important in life" feeling that I think is part of these life and death struggles with chronic illness.

I don't care if people think we are silly or that I am "out there". I do and I don't. Mostly I don't.

I think we can live like we are. I think that I will be successful in my venture, I believe that Shawn will be alright, I believe we will be able to pay our bills and live in a comfortable way.

So yup, fuck her and everybody else that hates happiness. Fuck'em.

Thanks ladies. Thanks for accepting me for who I am, for being so very supportive and for being honest. I can't imagine how we lived without you all. I guess we were alone and now we are not.
Thank God

A Debbie Downer but I don't give a shit I'm grateful as hell.

2009-06-25T22:30:00.006-04:00

This first part is just a venting session folks so take it with a grain of salt.

Ugh I go crazy over this same thing over and over again and I don't know why the hell I do it to myself. A real glutton for punishment. (On a side note my mother told me that the definition of insanity is doing the same thing and expecting different results)

Tonight Shawn, one of my girlfriends and I took a ride up to this little shop in NH.

She sucks the fucking life out of me. Seriously. A vampire that sucks the life out of you not with her teeth but with her tongue. Although with her, it's not intentional but the result is the same. Her whole vibe reverberates with negativity. Everything that you say she knocks. Like those pigs that turn everything you say into something dirty, she turns everything negative. I can't handle it. Shawn comes with me because he knows she really drags me down. He lightens things up, he acts like a buffer or sometimes a referee.

So you might be saying well why do you continue to hang out with her?

I don't know. I like her in a lot of ways, she is compassionate and sensitive but likes to come off like she's hard and tough. I don't get it. She is loyal, she is a lot of fun for the most part, she's adventurous and always up to try new places or things. Here's the downer part...she belittles everything that I do, she is constantly telling me how I should handle every situation in my life and how she knows better than I. Mind you she has never been married or even in a long term committed relationship, she has no children, owns her own home and lives with her dog. She has never even dealt with having a room mate.
I have a degree in Early Childhood Education, psychology and nursing. I ran a very successful and lucrative home childcare and preschool program, prior to my nursing career, I do have a wonderful confident child, I have a very happy and solid marriage. I think I know what I'm doing.
I am very careful to never give her advice even when she seemingly asks for it, no way. No way I have learned that over the eight years I have known her.
She dismisses everything that we are doing "Why are you doing that? You should be doing it this way. You should say this. You should give up your dreams because they are stupid, you are too naive. That will never work. " and on many occasions she told me that I was a fool for thinking Shawn was going to make it. Even if she believed he was going to die, why would that be important to impress upon me at that time in our lives. Did she think it was helpful? She always brought it up.." You should remarry, he'd want that. Well you are going to have to get used to doing these things for yourself. I hope you are preparing Sara" and blah blah blah. I so wanted to tell her to shut the fuck up and get out of my house!

Everything negative negative negative. negative malicious gossip ugh.
I am no saint believe me but oh my God I do not put anybody down. I would never poo-poo someones plans or dreams.
People do succeed, people do have happy honest marriages, it's not so unbelievable. Yet she refuses to. She wants to believe that happiness and true love are nothing but fantasy.

Alright that was quasi-therapeutic. I got that off my chest, I'm not looking for answers really but I'll try to remember to bring it up with my shrink.

Part Two------I don't give a shit I am grateful as hell !!

My life is good. It is. It's been hard and some times things were really fucked up for us but we always loved each other and we always laughed and we made love and we got through it. We are here on the other side.
Our family made it through intact and in love. I am so grateful and amazed by the events of the last almost seven months. Our life took such a drastic change in direction, everything changed for the better. Thank God.
Well Shawn's out for a ride and I am out on my deck typing away listening to the sound of the waves rolling in and enjoying the cool salty breeze on this warm gorgeous night. I am so grateful.
Seven months ago we were in the depths of despair. I could not see the light at the end of the tunnel. Yet here I am.
So fuck her. Fuck her I am happy, I am blessed, I do have a wonderful life, I have a wonderful daughter, MY HUSBAND IS ALIVE.

If this is fantasy land then I'm staying.

Not Motivated edited a couple hours later @ 3.49

2009-06-24T13:33:00.006-04:00

Ack this weather is the pits. I should be making jewelery and instead I am doing everything but. I threw on laundry, cleaned up the kitchen, washed the floors, changed clothes 4 times, shoes twice, curled hair (even though I knew it would frizz up the second I walked outside), brought in the trash barrels, took a short walk, caught up on some blogs, FB and e-mails and here I am blogging. Ugh.

I have the most horrific inferiority complex. I am petrified of rejection. I can love love love a piece I've created and then I'll look at it and think what if someone doesn't like it? What if one person in the whole wide world thinks it sucks?

I know that this is an irrational way of thinking but it is an obsession of mine.

The sick feeling that I get when I sense someones dislike for something I have put my heart into is nauseating. It's ridiculous I know but it doesn't stop it from being real.

I can have a hundred positive reactions but it's that one negative that will cause it all to come crashing down. Makes me nuts, I wish I was not this way but I am.

I instantly feel horrible about everything, I feel disgusted with my body, I feel unattractive, I feel inferior in every sense of the word.

I think I am good at this new craft of mine. I think that the jewelery that I create is beautiful, simple, organic, and magical.

I wonder about each piece of seaglass or seapottery that I find, where has it been, how many hands have held this piece, how many conversations has it been privy to, how did it end up in the sea and how long has it been there?

Some pieces I find I'll keep them in my pocket and rub them throughout the day. They have such a wonderful smoothness to them and yet they are textured in this beautiful rugged manner.

Well Shawn's home and he's wondering why I won't let him read my post. He's not pushing it now but I bet he'll take a peek later on. He thinks my mental health is his business....he's got some nerve.

Edit @3:49 p.m.: I added three photos of a piece that i made yesterday. I love it, it's thick and perfectly rounded and smooth. I actually carried this piece of seaglass around in my pocket for months. Slipping my hand in and being able to rub and flip that piece around was very soothing. I think it helps to keep me in the present tense, the "Now". I bet there is a name for it. Anyway I am going to hate parting with this one, but God help me if I put anymore in my "my collection" box Shawn's going to kill me. I know me and I'll hold on to it for as long as I can consequences be damned !

Grateful - NY meet-up

2009-06-24T10:59:00.002-04:00

I have so much to say about this past WE but somehow my mind is not spitting out the words to describe it.

I'll say this...I would do it again in a heartbeat! Everything was perfect, the ride, the hotel, the food and of course the people. We laughed and exchanged stories until we were exhausted. We took lots of pictures and I think they'll speak for themselves.

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

2009-06-15T16:10:00.005-04:00

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.

Trip to Virginia and the new Caddie

2009-06-09T13:15:00.003-04:00

Sooooo.... the trip was great. Luray where my Father lives is gorgeous, we visited the Luray Caverns and drove along Skyline Drive. I took a ton of photos, couldn't help myself.
The time we spent with my Dad was so much better than I initially expected. He was great, looked good, thinner and older, but positive, pleasant and his energy level was surprisingly pretty high. He proudly introduced us to his friends and neighbors. He was calm and just all around had a good vibe going.

I couldn't help but thinking that the cancer had taken the bitterness out of him.

My Brother and I both remarked that he had really mellowed out. I kept saying that he seemed like he had taken a couple of hits of pot. He was clearheaded enough but mellow. After I got home it occured to me that dah he was high. He was taking 5mg of Marinol twice a day, muwahahahahaha. It really brought out the best in my Dad.

My Dad bought a 1987 Cadillac a few years back and had been working on it. The car is a beauty, a Coupe DeVille fully loaded and in mint condition, a real "creampuff" as my Dad calls it. He gave it to me. I love it!!!

Since streamlining our finances I have been driving an old Jeep. I actually love it but it's been crapping out. I don't mind putting the money out for repairs but it is a hoopty in general. So the Caddy is unbelievable and a huge Blessing.

On the Shawn front..he is doing really well. Still on pureed foods but no pain, no reflux and even more important NO constriction in his airways ! He has been requiring dilitation every two weeks since February and yesterday was three weeks and he still feels open!!!

Yayyyyy.

Still Good....whoa

2009-06-06T16:21:00.003-04:00

So Shawn had his surgery last Wednesday. Everything went very well. They checked his hook-up sites and they were open and healthy looking. Unfortunately they kept him until Saturday so I had to make the trek to Virginia to see my Dad without him. My Father and I had been estranged for many years and have only been on speaking terms for the last year an a half. Last Feb he came up to help me remodel the kitchen during one of Shawn's month long hospital stays. It was an opportunity for us to kind of get to know each other again. Almost 15 years of nastiness between the two of us, I became a wife and mother in that time period. He wasn't there.

This past October he was diagnosed with Cancer. Primary site is lung with mets to brain, liver, and lymph. He is being treated at "The Cancer Centers of America" and I have to say I am extremely impressed with the care he is receiving. Frankly when I heard his diagnosis I didn't expect him to survive the holidays. He is doing great, here nearly eight months later.

I had considerable anxiety with respect to seeing him. I felt like he was back in my life and now he's dying. I didn't want to see him sick. My Father was always very muscular, very fit. He has always been my Fonzie. I know what cancer looks like. I am a nurse and I did not want to see my Dad ravished by it.

I bucked up. I accepted that this was how the trip was going to go. Me without my husband for support, me on my own. Shawn spares me from most difficult experiences. When there is something that is uncomfortable for me, he is my cushion. He helps me through things, sometimes just holding my hand, sometimes fighting for me. He has always been my "make this go away". I made up my mind that everything was going to be great. I imagined my trip as fun and full of adventure, happiness and nature.

My brother and I drove down together with his daughter 7 and Sara Lou 13. We left Friday night 7:30 p.m. the girls were sleeping by 10pm and Peter and I enjoyed the ride. We stopped when we needed to, no pressure. We talked about growing up, all of the camping we did as a family, the injuries sustained, the traveling. We talked about our Dad. My brother shared that he too was sort of frightened seeing Dad sick. I think through all of the chatting was very cathartic for the both of us. We arrived in Virginia around 5:30 a.m. feeling peaceful.

To be cont'd....

Great Weekend

2009-05-26T01:29:00.002-04:00

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.

Update

2009-05-22T11:36:00.001-04:00

Shawn spoke with the doc this morning, they have scheduled his fundoplication for next Wed. so if all goes well with today's surgery they may discharge him sat and then readmit him on Wed. So what do they call that WE furlough.
I'll have to go to Virginia without him. Wah

Good News and video clip

2009-05-20T17:11:00.005-04:00

Tina is celebrating Good News with Shawn and Sara at B&W!!! No rejection !!!!! No pneumonia !!!!! he is being treated with IV antibiotics for an infection @ hook-up site R side. No infection noted in L side. CT scan is scheduled, trip to OR on Friday to determine what is causing the restriction/decrease in FEV1%.

I was lazy and wanted to get this up quick so I just copied my FB status.

His FEV1% was 28%. So weird.
Oh this is pretty cool. Shawn bought me a new camera for my birthday and it takes video, I was goofing around and taped this. Hee hee it's funny. Note he is sucking in his gut because he thought I was taking a picture not video!!!!

He's in the clink

2009-05-19T04:24:00.004-04:00

Crap. Long story and right now is probably not the best time for me to try and get it all down but here is the basics.

He went in for sched dilitation and biopsy, his R side had pus in it and was super restricted. They opened him up and cleaned him out but are keeping him for a few days of IV abx. The restriction kept him from clearing secretions and they pooled and festered yum.

Rule #1 Don't mess with your Transplant Team

Shawn got a good ass kicking from several members.

I felt like crawling under the bed. I should have insisted that he went in Friday night. It was just weird timing. He had pre-op on Friday, they did a chest x-ray, I kind of assumed that if there was anything on it they would have notified us but no. I'm not sure if there was anything there on the x-ray or not, I'll have to clarify that.

Man I am pooped out, I feel like shit. I hate leaving the hospital alone. I hate it. I know that Shawn is where he needs to be, believe me and I am grateful that he has such a great team but I miss him.
It's 4:30 and I just miss him. This is the shit that reminds me that he is not o.k.
When he feels good, even when he is going in every two weeks to be opened up it feels alright. Like he is going to have his braces tightened or something, it doesn't feel scary. In fact I am comforted by the fact that they are always peeking into those beautiful new lungs of his.

I want to live in the state of semi-denial. I like it there.

he

2009-05-19T04:24:00.001-04:00

F'ing Beach nut-bag!

2009-05-12T03:46:00.002-04:00

Grrrr. O.K. well I'll probably post more about this later because after catching up on everyone else's blog I realize that I am finally getting sleepy and it is 3:47 a.m. so that is a good thing.

So the moon is full and when that happens the tides are super high and super low and when that happens the seaglass is abundant and when that happens Tina is a happy camper!

Early this morning 7ish the tide was out and I could see a stupid guy down there with his stupid baggie and I wanted to throw a rock at him or at least hope that a seagull would poop on him, because I wanted to go down there. I knew that I couldn't because Shawn was going to be out all morning and I did not want to take the chance of running into "C". No spank you.

That guy stayed down there until the tide came in.....I knew it wasn't "C" (I have binoculars mwahahahaha)

(wow, side note...the birds just started singing...soooo loudly that I can hear them with all of the windows closed. No wonder I usually wake up every morning at this ungodly hour...time for a white noise machine 3:54 a.m.)

So anyway I didn't get to go down then but made Shawn promise me that later 6ish when the tide was out he would go down with me.

Shawn and Sara were out together when the tide went out this afternoon and MAN I wanted to go down in the worst way but I didn't. I didn't go because I was petrified that I was going to run into "C" (the fullmoon and corresponding tides really bring out the beachcombers).

I worked on a project most of the day and stared at the beach....ahhh imagining the treasures I might find and thanking God for our beautiful home.

Shawn comes home and I am chopping at the bit to go over. He's a doll and doesn't make me feel like I am being a pain in the ass even though I know he was headed for the couch. He collars Jake and away we go.

You know I didn't feel right from the moment we got there. The coast was clear so to speak, no sign of "C" but I couldn't get into my zone, my eyes couldn't focus on the glass, I was feeling frustrated and distracted. I never feel that way on the beach when I am with Shawn and of course never ever before the stalker crap started.

I look way down the beach ( WAY down, like easily 600yds away) and I see this guy ( my eyes are bad ) the clothing doesn't look like "C", but the way he moved looked like him. I scurried back toward my end where Shawn was talking to another guy with his dogs. I felt safer, so moved down toward the water but right below Shawn.

I am telling you I dropped my eyes down to the sand for what seemed like 5 seconds and when I picked my head up he was there.

He was maybe 15 ft away from me and moving very quickly, big grin in his face, saying something about me never getting enough and never being satisfied ( I'm assuming he was making reference to the seaglass but it sounded weird) I nearly had a heart attack. I totally froze. All of the scenarios that I had rehearsed in my head and all of the advice from my therapist, the police and my friends went right out the window.

Shawn was there in front of me, between "C" and I before I realized anyone else was moving.
"C" stopped short and said something like "How are you doing?"
Shawn said something to "C" and sort of put his arm out for me to move behind him because that mother fucker was actually circling my husband to get to me. I don't know what else was said I swear to God it was like I fell asleep or something. The next thing I knew we were already up the stairs and Shawn was yanking on my arm because I think I nearly walked into traffic.

I think Shawn called the police, I don't know we'll talk about it today I'm sure. I cooked dinner and went to bed. All of the air had been let out of me, I felt flat and I just wanted to go to sleep.

When Shawn came up to bed, I told him that I was thankful he was with me. He told me not to think about it right then and to go to sleep. He said so sweetly "You're safe, sleep Baby" and so I did until of course around 1 a.m.

I woke up pissed at myself for forgetting everything I had planned on doing and saying. I also realize that I really need to do something. Take a self defense class or shatever but I can not be afraid like this, it's awful.

Supplies have arrived!!!

2009-05-08T09:09:00.006-04:00

I have been waiting for some supplies to arrive for my jewelery and yesterday there on my doorstep was the little box!
Drill bits which are soooo tiny, some leather cording, and my beautiful sterling silver wire at last.
Shawn also picked me up a bottle of my glue that I use for mandalas so I am good to go.

This piece which is a pottery shard is going to be used in a piece for a friend of mine. I love the color, which is pretty uncommon and the intricacy of the design. So delicate looking but clearly has withstood the test of time being tossed around in the ocean for God knows how long. I have not found a similar piece.

I think she will really like it, hopefully she'll love it!

So anyhoo it's a gorgeous day outside, and I'll be hitting the beach soon. I have not seen my "stalker, C" since my husband went to the Police so I'm hoping he won't be a problem. Plus now that the weather is warming up there is usually at least a couple of people on the beach, walking or playing with their dogs.
Honestly I feel best when Shawn is down there with me. I'm petrified of getting zoned out looking for seaglass and having 'C' catch me by surprise. I've gotten into the habit of keeping a lg rock in my seaglass bag ( which is a cotton drawstring sack), I figure it's easy to swing and control. Plus I wouldn't have to fumble around for it and it's not an additional thing to carry.
I always have my cell phone and whistle too.

Enjoy the Day!!!

2009-05-05T10:54:00.003-04:00

So Here is Shawn pre-op, hanging out being a very patient patient, then post-op clearly aggravated with me for taking his picture and finally the monitor that reveals those beautiful numbers that make my heart soar. Heart Rate of 77 (norm is 60-90),
Oxygen saturation 98%, 98%, 98% !!!!!
I see those numbers and it always amazes me. 98%.
Pre-transplant, the first time I ever saw an O2 sat on him was back in Feb of 2000 when he was asymptomatic but first diagnosed and he was 92%.
At his worst, he would dip into the 70's with mild exertion.
Here he is with those wonderful new lungs and they are giving him an O2 sat of 98% and that is fresh out of anesthesia.

I spoke to Dr.C (or "Phillip" as he informed me he would like to be addressed as) post-op and the lungs look great. Apparently the R side needed to be dilated, the L was open there was no plugging, no signs of rejection.
He didn't biopsy for rejection, he feels that the FEV1 drop is most likely due to the restriction.
I can't lie I was a little surprised when he said he hadn't biopsied but I have to trust that he knows his shit and I do trust his judgment.

(Camp has a very special place in my heart, how can he not? But that's another post, because he is an exceptional man, unlike any other surgeon I have encountered.)

I go down the list of signs of rejection in my head pretty regularly and it's true Shawn has only the decrease in FEV1% which I know is a powerful number but I just don't feel like it is all that important anymore. Well in the capacity of clinical indicators for rejection. I think it makes perfect sense that Shawn can't get a good number with the restriction. Soooo perhaps the numbers will look better next time, but regardless of what they say I know my husband.

I know that when he comes out of the OR he can breathe freely. He goes up and down the stairs without any shortness of breath, he has no wheezing, no trapped secretions and he FEELS better.

Shawn is almost 23 weeks post-transplant.... I am so thrilled with him, with our donor, with Camp, with the whole Transplant Team, with the staff at B&W from the parking attendants and cafeteria cashiers to the schedulers and the techs. This is a wonderful and positive experience and every breathe he takes is another miracle. I'm so thankful he's better.

I'd like to show my appreciation to all of them but I'm not exactly sure how. Hmmmm?
I would be grateful for any ideas or suggestions.

We are living an amazing and Blessed life.

Shawn and Jake

2009-05-03T21:23:00.003-04:00

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

2009-04-30T11:51:00.004-04:00

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.

Only a Number

2009-04-30T11:08:00.006-04:00

Yesterday Shawn had clinic. His FEV!% was down to 35%, or at least that's the result he got. Crap, crap and crap.
Everything else looks great, his x-ray looked fantastic, the doctor brought up a variety of Shawn's past x-rays for comparison on his monitor. The lungs appear to be in great shape. But that stenosis is fucking up his FEV1%.
Right?
That makes sense.

If Shawn is trying to push air through and The FEV1% is the amount you are able to push through in that 1st second, and he is trying to push it through a very narrow passageway, it makes perfect sense that that particular measurement would justifiably suck.

I was thinking about plumbing and if are using 1" rather say 2" copper as a supply you are going to a very different result. The amount of water able to flow is going to be decreased, reagrdless of the size of the water heater. His total volume nubers are good.
Anyhoo of course whether there is a resonable explanation that doesn't seem so dreadful or not it still has to be dealt with. But this seems o.k. to me.
Things can be done, mechanical things to change this.

So the Team has put this plan into action. CT scan (which Shawn had later that day)
Monday morning, Pre-Op testing, PFT's in the lab, then OR , where they will bronch him, perform dilitation, debride if neccesary, look around, tidy up, and biopsy for rejection. So far there have been no other clinical indicators to suggest rejection other than the low FEV1% so I'm not too fearful of "R" being an issue.

Ugh.

He feels good, looks awesome, he is doing everything.

*this post got off on a wild tangent so I copied it and made it into the post titled "..peaceful easy feeling.."

2009-04-22T10:28:00.004-04:00

What a lovely morning it is.

The last couple of weeks I have been struggling with a wide range of emotions, but mostly depression and agitation. It's always a huge fight in my own head when my depression rears it's head because I can't for the life of me understand why. On one side of my mind I see no reason for it, I see it as a ridiculous weakness, I see it as laziness, weakness, a figment of my own imagination. I see it as something that should be completely within my control and something I should be able to snap out of, stop being a baby etc. I do not accept it as a "chemical imbalance" or "mental illness". I see it as something I should be able to talk myself out of.

On the other side of my mind, I accept it. It's part of who I am. Whatever the cause, the fluctuation in hormones or neurotransmitters is real. Sometimes my mind does not run smoothly. Sometimes it is a washing machine that has gone off balance.

Over the years I have learned ways to help push the reset button so to speak and they work pretty well.

Anyhoo my triumph today is that although I am not sleeping in a normal pattern I was determined last night when I went to bed that I was going to have a good day today.

I went to bed at 10pm and was up at 11:39pm Ugh !!!
I was back asleep sometime after 3:49a.m. and then my dog woke me up at 5:16 a.m....oh that's a gross story..but I digress back to sleep sometime after 5:40 ish
I was awakened by Shawn at 6:30 a.m. (who was determined to be the first patient at the GI office to have his Ph probe pulled)
I fell back asleep around 7ish and then woke up myself at 8:19a.m.

I know this is all riveting but I mostly write to understand myself so sorry guys.
When I woke up I was still clinging to the "I am going to have a good day today".

I am. Maybe it's the sun is shining, maybe it's my hormone shift, maybe it's me forcing negative thoughts out of my head, forcing myself not to ruminate, whatever it is I am happy. I am having a good day and I am so thankful for it.

Shawn decided this morning that since the Red Sox game was rained out last night and rescheduled for today at noon, that he would take Sara Lou into Boston with him and see if he could score some tickets. So guess what? Yes, they are now wandering around Fenway together.
Shawn the same man who was so crapped out not five months ago is enjoying the day with Sara Lou.

I just took my delicious famous lemon poppy super duper pooper loaves out of the oven, the house smells very lemony, I'm working on a seaglass project and I have an appt with my shrink this afternoon. A very good day indeed!

Shawn and I going for a ride

2009-04-19T12:22:00.006-04:00

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.

Spring has Sprung

2009-04-18T16:59:00.001-04:00

A Good Day and a bad day/night..Ha!

2009-04-18T02:09:00.003-04:00

Today was gorgeous here in Boston, absolutely beautiful, a perfect day for a ride.

Shawn was out on the bike for the entire morning, I was so happy for him. He was productive too, got some errands done and made a couple of social calls to boot.

When he got back, Shawn, Sara, Jake and I all headed over to the beach. Too sunny to stay away. Collected a few treasures and I was satisfied.

Then we headed into Boston. Shawn had his trip into the OR and everything went very well, he was out pretty quickly. The Doc said everything looked great, stretching needed but not nearly as much as last time, the lungs looked great and he would see him in 3 weeks. So I was very pleased with that as well.

O.K. so here I think is why I am up at freakin two o'clock in the morning.

My Father .......is dying and I can't even bear the thought of it. I can't bear the thought of seeing him, wasted away, eaten up by the cancer and ravaged by the "treatments".
He was diagnosed in October and I honestly didn't think he would make it through the holidays.
The primary site was lung but he had mets to his brain, liver, ?lymph nodes in his groin.

He was not symptomatic at the time of diagnosis, well he had a lump on his shoulder, they took an x-ray and well you know the rest. I advised him to enjoy himself, take what he needed for symptom relief and live the rest of his days in relative ease.
I know that sort of advice is easy to give and I don't know if I could do it, you always are going to grasp at whatever hope is there, as if # of days are all that matters.
He pursued aggressive treatment, it is a fine facility by all accounts but the result is the same.

He has been miserably ill ever since due to the side effects of the treatment, not the cancer.
My Father was always a very strong man, not the biggest but definately a tough Bastard, raised in Chelsea, poor, ignorant, joined the Navy at 17, had all of his teeth pulled 6 months later because his family couldn't afford dental care, he worked his ass off for his family and he could do just about anything.
By trade he was a plumber, he retired from the National Park Service, he was also well....anyway
he was a lot of things he was my "Fonzie". Big muscled arms in tight white t-shirts, pack of butts rolled into his sleeve, always under the car tinkering, he taught me how to change the oil and filters when I was 11. We spent countless hours together in the driveway, him on his scoot thingy under the car and me handing him tools, pumping brakes or whatever else I could do...just to be with him.

Even at 60 he was still a certified Forest Fire Fighter, he could run 5 miles with a 30lb pack, he was by all accounts in great shape. Ha.

So here I am now. We have moved into our new place, Shawn has been listed and has had his transplant, he has recovered well and is relatively stable. I have the means. I have no excuse.

I have to go see my Father. The thought fills me with dread and I can feel my chest tighten and I want to hold my breath. I don't want to cry, I don't want to hurt, I don't want to fall apart because I've finally been able to pull myself together (somewhat). Shawn is alive and thriving, that horrible weight and pain is gone from me, he is o.k. so can't I be done with this for awhile?

I feel selfish and childish. I know that everyone has to go through these things and some have many many harsh things in their lives but I just don't want it. Not now, not yet.
Of course I have no choice.
I do try and put a 'spin' on it. I have so much to be grateful for, how dare I complain, there are mothers mourning their children. At least this is the way it is supposed to happen ...parents first right?

It's the middle of the night I am tired. I am eating Breyers Black Rasberry Chocolate Chip ice cream from the container, Ugh. I gotta get some rest
Mellow Me Meds take me away.

*P.S. I haven't seen my Father since last February, when Shawn was deathly ill. He lives in Luray Virginia. We were estranged for close to ten years.
Guilt, guilt, guilt

Good News

2009-04-16T18:01:00.003-04:00

Shawn had an appt today actually with a second thoracic surgeon regarding a hiatal hernia he has. (wow that was a lot of H's)

Apparently some of his decrease in lung function could be attributed to reflux/micro aspirations. I don't think they found anything in particular just trying to cover their bases. Prior to transplant they did some testing and it was determined that he had only a very minor amt of reflux but I guess sometimes after surgery it can be worse...I'm guessing due to the manipulation of his guts for lack of a better word. So anyhoo he'll be going in for more GI related tests next week.
Shawn has five hernias in total so it'll be a while before he is all buttoned up.

The good news is that for whatever reason they actually did a set of PFT's and his FEV1% has increased to 50% from just 36% a week ago. Actually now that I look at the two print-outs I see that they used a slightly higher "predicted" so he is even a little better than 50%. I'm no math whiz but now I'm determined to figure it out exactly.

Well his FEV1% in liters 1.66 and today he is 2.32 so although not the big numbers I'd like to see he is still moving in the right direction!!!!

Tomorrow he has surgery again, just the dilatation this time.

Will the drama ever end?

2009-04-14T14:18:00.003-04:00

O.K. so I posted something on my facebook profile because I got my feelings hurt and I got a ration of shit for it and I was asked to take it down and that was after they deleted me from their friends list. So now not only can I not vent on my own page because she will be offended but I can't vent on my own page because a mutual friend of ours might see it and tell her and she might be offended. Oh the humanity.
Really? I mean really does the world revolve around her? I'm not digging this latest development at all.
So now I have to censor myself so as not to upset her. What the fuck.

And why am I giving into this crap? This whole mess is really exhausting me and what good will come of it.
I'll always remember the things she said and she will always remember what I've said so I'm not sure what happens at this point but I have the distinctive feeling that I am the bad guy here.
Oh yeah she said she had all of her friends and family read what I wrote and what? they agree with her?
Oh man what a mess.

Friends

2009-04-13T15:45:00.003-04:00

I feel like I broke up with a boyfriend or something. I had a terrible falling out with a very good friend of mine. I let my keyboard get the best of me and really let her know how I felt. I was not going to be manipulated and I was not going to be made to feel guilty for something I did not do.

The long and short of it is: while I was in Florida at a grocery store I called her for the recipe for Sangria, then she said "...while I have you on the phone, my sitter canceled, can you watch the kids on Fri when you come home?" (I was irritated that she was asking me this when I was on vacation in the first place) I told her that I would like to help her out but I couldn't commit because Shawn was having surgery that week and the date had not been scheduled yet.

That was that.

I did not call her or hear from her. When I got back Shawn had made plans for us to have lunch with friends, then shopping then going to dinner and to see a band Friday night. When she saw his post on FB, on Monday, she sent me an e-mail saying "Please don't cancel on me!"
I was genuinely surprised. I wrote her back saying that I wasn't canceling because I knew I had not said that I was watching her kids.

Well you can see how this got ugly.
She left me messages on my cell, for me to call her and I didn't. I didn't call because I did not want to deal with her. I knew she was goingt to try to convince me to have Shawn cancel our plans, so I could watch her kids. I knew she was clearly not prepared to take No for an answer and would do whatever she could to make me say yes.

Soooo instead of listening to her, I sent her an e-mail and I told her why I wasn't calling her back and that I know that I had not committed to watching her kids because I did not know when Shawn was having surgery.

Well I know she did find a sitter because I know she did what she had planned.

I figured she got over it but I was wrong. I left her notes and comments on her FB, friendly stuff and it wasn't until last Wed that I realized she hadn't responded to anything I had written. I wrote that I had noticed that she was ignoring me and that we had our traditional Easter Ricotta Pie and Pizza Gaina night coming up and wondering if we were not invited.

Then all hell broke loose.

She wrote me an e-mail saying that she wanted me to acknowledge that a friendship should include respect and courtesy and that was IT for me. I really ripped into her.

I am extremely articulate when I am pissed off and I held nothing back. I was honest, I didn't say anything that wasn't true and I believe that I was in the right but what does it matter now.

Ugh

Not #'s we were hoping for

2009-04-08T11:23:00.003-04:00

Well I guess we expected a big jump in Shawn's FEV1% because he feels so much better since having his dilatation on Monday.

His FEV1% increased by 5% to a whopping 37% or 1.66L

His FVC did increase another 17% to an all time high of 77% or 4.31L so that was very encouraging.

Shawn is pretty bummed out over it, he was quiet all the way home. Yeah suddenly I missed the smart ass ball buster that he has been over the last few days.

Up and down, up and down, up and down. I could go for a little predictability right now.

I didn't feel like it was the right time to lecture him on using his incentive spirometer but I wanted to.

We got home and he headed off to the gym, I guess that's a good sign right? He keeps trying.
He has to go back next Wed for D&D again. Well slow and steady wins the race.

We actually ran into a guy @ clinic who had a single lung tx about a month before Shawn and he has had so many misc complications in addition to stenosis that I really felt like we couldn't complain at all. Plus he lives like two hours away from the hospital so what a bitch that has got to be.
I can't imagine what we would do if we were so far away. At least I know that if Shawn has to be inpt it's only a 20 min drive for me to see him.

So once again in perspective things are going really well, he is having a very nice recovery and our lives are certainly more stable than they have ever really been.

It will be nice though when those #'s look good.

Oh yeah I've forgiven him for the tires.

New Tires

2009-04-07T17:17:00.003-04:00

Ugh Shaw has this thing about new tires.
Every truck he has always desperately needs new tires. I don't think they really need new tires I think he just likes new tires.
A month ago he was going on and on about how the Jeep desperately needed new tires and he couldn't buy three new tires to match the never used spare tire on the back, he wanted to buy four new tires and would then need to buy a fifth tire for a spare since the new ones were going to be bigger than the originals for some reason. So he was very busy on-line looking up tires and of course new wheels because the new tires would be too big for the old wheels. Mind you this Jeep is a real beat up truck, putting fancy tires and rims would be like putting a silk hat on a pig.

Well now he has a new truck. A big Dodge Ram. He got it from a friend of his, some deal was made (he didn't pay for it)I'm not sure of the details but he's thrilled because losing his pick-up and having to drive around in the Jeep was a big blow to his manhood or pride or whatever.

He said it needed some work on the exhaust and something in the front end. He had the exhaust fixed and then I thought he was dropping it off today to have the clunking in the front end fixed.
This afternoon we go to pick it up, he comes out to tell me I can go that he's all set, I asked him if they fixed it and he says yes....it needed new tires! He fucking kills me. New tires! My stupid Jeep barely stops I drive with my tippy toe, the starter grinds, you get dripped on when it rains, and the muffler is swinging and he needed new tires.

Him and his frigging new tires. So I'm a little aggravated.

I asked him what happened to my Jeep desperately needing new tires....he says that he mostly just wanted new tires to make it look better. That is a perfect example of the sneaky Shawn. Fucker.

Oh well I guess it's not a huge deal, but aggravating none-the-less.

He can breathe again....whew

2009-04-06T20:37:00.006-04:00

Shawn getting cranky waiting in pre-op

Here he finally Konked out

This is The Fabulous Dr.Camp, the surgeon who played a HUGE role in saving my husbands life.
He is Shawn's Transplant Surgeon and we love him.

Shawn did great today and he looks, sounds and feels so much better. It really is amazing. We got home from the hospital and Shawn walked up all the steps to our place @ a good clip and was not even slightly winded.

His surgeon (Camp)said that the R side was a pin hole....my poor baby. The L side had shrunk up too but not so bad.
So he was stretched open and now feels like a million bucks.
Camp said that the lungs looked great, no plugging, no nastiness going on and no further debridement needed he's very well healed.
Shawn will have to go back in next week to have that R side stretched a bit more.

But really who could complain, not me and certainly not Shawn. A very small price to pay.

He'll be doing PFT's on Wednesday and I'm dying to see how they look.

( I hate how I can not arrange the fucking pictures on this damn thing! )

Oh P.S.
An update on Mr. Kuckoo pants my beach weirdo....So Thursday I was out all day with Shawn, we picked up Sara Lou from drama @ 5:30 and get home at 6'ish and guess what? Yup...a gift left for me on my doorstep. A very nice plank, painted, distressed and then carefully stenciled with.... 'Swampscott est.1629'. to hang on the side of my house I guess. There was a note written on the back:
" I'll be alone at Rosa's Barbershop 6:30-9:30 cleaning. Why don't you come a knockin and cheer me up. Your Friend, Craig"

Yeah, I know. I have a problem.

Kicking himself...so I don't have to.

2009-04-05T17:45:00.002-04:00

So Shawn is totally regretting his decision to wait until Monday for his D&D surgery. He can't breathe for shit and it's pretty sad.
He actually started admitting this on Friday but he felt it was too late to do anything about it and he's probably right. I don't know maybe not but anyway it's scheduled for tomorrow and tomorrow can't get here soon enough.

Funny it's only been a few months that Shawn has been breathing normally but wow the difference is crazy. I forgot how awful it is. I'm sure he has to.

I think he is especially pissed because I'm having this "problem" with the seaglass guy and he is not in any shape to do anything about it. Not that he should be messing around but he would pretty easily intimidate this guy physically. Shawn has a really mean face that says "Don't Fuck With Me"
and that is pretty much all it has ever taken. He prides himself on scaring off guys. He's fresh like that.

Well anyhoo it's one more night and then whew easy breathing again.

Shocked

2009-04-01T17:56:00.004-04:00

I was shocked by today's clinic appt.

I'm just going to put it out there first and then the details.

Shawn's FEV1% was fucking 35%. I almost shit. He brought the copy into the exam room where Sara Lou and I were waiting while he did his PFT's and the first thing he said was "That's probably not right, right?"

It's a 47% decrease since Feb 3rd. He was @ 65% then. I asked him how many times he took them and he said three times. I told him that it was most likely accurate. I was so shocked by it. I told Sara to go hang in the waiting room because when the doctor came in she was going to check his hernia. I wasn't lying but he certainly wasn't going to be naked.
I was afraid. I was coming unglued and I didn't want to freak her out.

I was afraid that the doctor was going to see those numbers and then come in and deliver some harsh news.

As we sat there and I looked at the numbers, I kept thinking, 'Don't freak him out Tina, Don't you dare freak him out !'

My logical mind had immediately checked out and I was running on fear and disbelief. What the hell? This isn't supposed to happen. Not to Shawn. Not to Shawn because he is a superman, my superman. My Super Transplant Man.
I thought what the fuck it's April Fools Day, of course another pseudo holiday like Valentines Day, New Years, Christmas Eve ugh.
What is with him and these special days? Every frigging one starting with transplant has been eventful.
I tried to make my head work properly...I tried to switch into logical nurse mode but I was really having a hard time. I'm sure it was only a few minutes but it felt like an eternity. I wanted so badly to soothe myself and Shawn too.

Shawn is the one who actually snapped me out of it and got my brain moving in a more productive direction. He said something to the effect of "Babe, I told you I feel like shit when I need to be opened up again, I can't breathe, this just says it on paper, but I knew I guess."

He took on the "I told you so" look and probably was thankful for the validation. He had a damn good reason for feeling short of breathe. That poor bastard.

So all his labs are excellent, his chest x-ray is clear.

The doctor comes in and they weren't shocked by his PFT's, they said it was to be expected based on the narrowing and obstruction of his airways due to the tissue sloughing off. I guess it shrinks up when they go in and debride with electricity and that is why they also dilate to help offset some of that.

He has been needing the procedure roughly every two weeks and tomorrow will be two weeks. He is scheduled to go in on Monday, the doctor offered to do it sooner but Shawn said no. She said this is not the first time they have dealt with this and that it can take many months before it is completely healed up but it's not anything to be worried about. They feel it's maneagable I guess. Probably small fries compared to some of the complications tranplant patients often experience. He is going to have PFT's done next Wed per our request. Shawn says that he feels wide open after the D&D so he wants to see his numbers. Me too.

She told him not to gain anymore weight (187lbs), no more than one beer on an occasion, wear sunblock and was otherwise very pleased with him overall. He is going to the gym on a daily basis, she was happy with that as well. He's down to 7.5mg of Prednisone and has been @ a therapeutic level with 2mg a.m. and 1mg p.m. Prograf. His WBC was a lovely 7.2 and all other labs within normal limits. So YAY for all of that good news.

So o.k. now that it's all out there, I feel better.

But man it did freak me out.

Ugly weather out there

2009-03-30T12:25:00.003-04:00

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?

He is Amazing

2009-03-27T16:23:00.003-04:00

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.

Step 1 sorting

2009-03-25T15:52:00.004-04:00

Three jars of misc blues...you 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

2009-03-25T13:55:00.003-04:00

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!

All is well

2009-03-19T20:49:00.003-04:00

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.

Changes

2009-03-18T18:52:00.004-04:00

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.

Ahhhh soaking up every bit

2009-03-17T18:52:00.005-04:00

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

2009-03-15T14:47:00.003-04:00

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

2009-03-09T19:12:00.003-04:00

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.

Out of sorts

2009-03-06T16:43:00.003-05:00

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.

A Good Day

2009-03-05T13:23:00.003-05:00

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.

Shawn's Shaggy Airway

2009-03-02T20:42:00.005-05:00

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.

Waiting

2009-03-02T10:00:00.003-05:00

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!

Overwhelmed

2009-03-01T17:41:00.004-05:00

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 color...red is the holy grail of seaglass
2)the shape...it is a faceted square piece
3) history....may have been in a ring
4) the size...it 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!

Seaglass everywhere!

2009-02-24T12:48:00.002-05:00

Arghhh

I have seaglass everywhere, it's making me crazy. I'm having such a hard time focusing on one thing.
It's the Spring coming, my poor little brain is starting to rev up, this is the hard part, the in-between.
Pretty soon mania will set in and watch out I'll be doing a million things at once and they'll all be awesome to me. My creativity goes through the roof, all of the ideas that are scattered in my head will suddenly become crystal clear, I will see the path and I will follow it.

But right now is the disjointed stage.

I'm going to take a shower.

An Amazing Night!

2009-02-22T13:16:00.003-05:00

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.

2009-02-22T13:02:00.004-05:00

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

2009-02-22T12:50:00.002-05:00

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

No Rejection

2009-02-18T12:59:00.005-05:00

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's out of surgery

2009-02-13T15:16:00.003-05:00

Shawn is out of surgery he did great ! The surgeon went in and cleaned up the seams, got rid of some necrotic tissue that was just sort of hanging out in there clogging up the works. According to the surgeon, everything looks good, no purulent secretions, the airways look fine. He said that there are "scabby" type areas from the original trauma, that just take time to slough off, sometimes months and months and months. They took biopsies and sent them off so I'll be waiting for those to come back.

He did have a slightly elevated white count, so the surgeon said the transplant doc might want to put in a PICC line and put him on a couple of weeks of IV abx but we'll see what she says. I'm wondering about the steroids, will he have to go on a higher dose for now? Hmmmm

Shawn looks great his throat is a little raw but it hasn't stopped him from ordering his food, he's starving!

Thanks for all of your well wishes, support and prayers!

Waiting

2009-02-13T12:51:00.003-05:00

I'm down in the library, waiting for Shawn. They took him in right on time @ 11:15. He looked great going in. I brought my camera in today, got a shot of the totally adorable "28 yr old" anesthesiologist. Crap I have to go plug in the laptop.

Oh Damn these Holidays

2009-02-12T15:36:00.003-05:00

My poorBabe, he was admitted. You know when the pager went off I knew it was too soon. They went in and sure enough something is going on at the seam. He knew there was something flopping around in there, he could feel it and you could hear it. They couldn't clean it up.

Thank God he kept bitching about it because he wasn't scheduled for this bronch until the 24th or 27th. There were a lot of secretions, could be pneumonia, could just be that they couldn't get past that "misjoint". They took cultures put him on IV abx for now and tomorrow he will go into the OR so they can put him under and his surgeon will hopefully go in and fix things up. I guess we'll know more after the surgery. They'll take biopsies then too and check for rejection. I guess it doesn't look like rejection whatever the hell that means.

I'm glad he went out for his ride yesterday.

It's alright, he is where he needs to be and we'll get through this.
Thanks for the support guys, I am going to bring Shawn in the laptop so he'll probably be in chat tonight. I hope so.

Bronch and Biopsy Today

2009-02-12T10:49:00.004-05:00

So here I am waiting in the family area once again. I don't mind at all.
Shawn is having a bronchoscopy and biopsy upstairs. Today he is exactly 12 weeks out of transplant. They usually schedule a bronch/biopsy for three months anyway so this is really perfect as far as I'm concerned.
They had scheduled it for Feb 27th, but he has some weird coughing going on so they bumped it up to today.

I don't know what is normal and what isn't for transplanted lungs so it could be totally nothing. His new lungs sound different, than an original healthy set, like mine so I don't really have a clue.
He had this weird flapping sound like a valve opening and closing for a couple of days, which the doctor thought might be a "shaggy" airway. I guess where the new lungs meet the old body, there is an overlap of tissue that eventually sloughs off, so maybe it was a hanging piece of tissue. That sound is gone now and he just has a cough, not a bad one, not constant and not productive but it sounds irritated.

Shawn's transplant has a history with Holidays, as you know he was transplanted on Thanksgiving and we got the call that he was experiencing rejection on New Years Eve so Shawn is wary because tomorrow is Valentines Day, oh that would really be too much so lets hope the biopsy shows no rejection.
Well lets hope there is no rejection anyway.

I know that rejection is always a possibility and I know that it is not unusual in the first year, but I don't want him to have anymore. Thanks but no thanks.

Well it is in Gods hands and whatever the outcome it'll be o.k.

He is Super Bad

2009-02-11T16:08:00.003-05:00

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.

He's got Meds !

2009-02-09T20:44:00.003-05:00

So after an hour and a half on the telephone, driving into Boston, chasing down the social worker, harassing his poor pregnant NP, and hanging out for four hours at the in-house pharmacy he has his meds! Thank God. Yes it was a pain in the ass and yes Shawn nearly blew his top, but he picked up around $1500 worth of meds for $35. How can we not be totally grateful? Phew...I'm glad that is over.

He has some weird thing going on in his lung, when he breathes in and out it sounds like a flap is opening and closing. His O2 sats are fine, no SOB, no pain, no increase in sputum, but a nagging non-productive cough and that weird sound. The doctor thought it might be a "shaggy" airway, I guess where the new and old meet there is a bit if overlap, and that tissue usually sloughs off and is coughed up I guess. So the bronch and biopsy that was scheduled for Feb 27th got bumped to this Thursday.

In other news Shawn's benefit is taking off, tickets are selling well and we're aiming for a sell out.
It's super exciting, a lot of people are working really hard and pulling this all together.
I can't wait!

I have to say I've been thinking alot about Jenn. Jenn is a friend of ours that we met through our online Cystic Fibrosis community. She passed away suddenly and it's just so unfair. She was trying to get ready for transplant, she needed a double lung and liver transplant, but she didn't make it. I'm sure she didn't see it coming, she had just finished making this beautiful pink afghan for a baby shower, she had plans.
Her funeral is this Friday. What a fucking shame.

Be grateful for everyday that you have the privalege of walking around on the face of this earth, sitting in traffic, worrying about bills, and all the bothersome stuff. You can see the sun shining and you can love.

Before and After Transplant Photo's

2009-02-08T10:57:00.007-05:00

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

2009-02-06T19:44:00.003-05:00

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

Health Insurance Nightmares

2009-02-06T15:58:00.004-05:00

Poor Shawn, last week we got a notice that his health insurance was being canceled because he didn't fill out a review form, he had of course since there was no way we would jeopardize his coverage. So after making 4 calls and sitting on hold for up to 14 minutes, I e-mailed them. Well we got a call back right away, the rep assured us everything was fine, ignore the notice, they had received the forms back in Dec, don't worry about it. Shawn got her name and a reference number for the call. Thank Goodness.

So today he goes to Walgreens to pick up scripts and they deny him. Shawn is on prednisone which makes him a little on edge, well man he flipped out. I can't say that I blame him I mean these meds are serious shit, it's his life.

Now after calling and calling and getting no answer, he is in the jeep driving to the headquarters, and he is really pissed. Yikes.

I hope he doesn't freak out and get bucked down. I feel so bad for him, insurance is a bitch man.

I texted him he says he's fine but he could be full of shit

The New Old Shawn

2009-02-02T13:56:00.002-05:00

So things are different here at the homestead, better in a ton of ways but definitely an adjustment.
I put my foot down on Saturday and stuck to my guns, I left, boycotted dinner, turned off my ringer and went for a 6 and 1/2 hour ride. Me in my shitbox Jeep, that I love, windows open, fresh cold air blasting in, and listening to Don Henley's "Boys of Summer" 1/2 of a dozen times.

It was great. I stopped along the way splurged and bought myself a Lg. Hot Cappuccino, no sugar, skim milk. What made the concoction even sweeter is that I paid for it with quarters I stole from Shawn's change jar !

When I got back we had a "talk", I told him that I need full disclosure, no bullshit, it's not fair. He agreed. I told him if he ever tried to make me doubt myself, if he tried to convince that what I was wrong about what I knew was right again, I would not be back in 6 1/2 hours. F'er. He's an Effer alright, but I find him totally irresistible.

Want to read something that will make you say "Awwww" seriously, I'll probably go to hell for sharing this but when I was out for my ride, Shawn had texted me a bunch of times, I didn't respond until 8 'ish, he asked me when I was coming home, I texted him back "Why?" and he texted me this: "Because I miss you and I love you and if your not here I can't make things better." He's a sweet talker alright.

So Shawn is back to his spunky old self, he's a challenge, he makes me work in this relationship. It's weird our dynamic is new I think. He couldn't breathe for so long he didn't participate in much anymore, he couldn't. I guess I didn't realize how much had changed, he was a ghost of himself.

That's exactly how I would describe it, like Shawn's light had been fading for the last four years, from November of 04 when we first moved into our house until November of 2008, until transplant.
We were talking about this and I told him that when he was transplanted, it was like he got new batteries. Like when you put new batteries in a flashlight and that dim light becomes super bright. That is what it's like, Shawn is back "on" again. He's funny and cocky, he moves very quickly, he eats like a pig, he cooks dinner, fixes snacks, delegates chores to Sara and insures they are completed, he goes grocery shopping and makes phone calls.
He is reconnecting with friends, reconnecting with life really. He makes me laugh and cry, and he frustrates me and he amazes me. He's arrogant and frightened. He is a super smart-ass, super fresh, super sweet.

Transplant is a funny and amazing and wonderful thing.

Shawn's being a DICK

2009-01-31T11:16:00.004-05:00

So today I hate being broke. We were invited to go out for dinner tonight with family, I love being with them, they are a lot of fun so I've been looking forward to it. Well Wednesday the exhaust falls off the jeep, we got it fixed yesterday..$190.00 there goes our "extra" money and then some.

So I don't want to go for dinner. My husband is pissed, he wants to go "They are treating us, Tina" but I don't want to go because I hate to go without money in my pocket.
I feel like shit.

Plus earlier Shawn kept asking me about when he can travel, crowds etc. Well he's been at all the same fucking meetings as I have, he has the same transplant notebooks etc...he knows because they have told us a million times, "when your prednisone is down to 20 mg". So I keep saying to him why are you going crazy looking for this info, you know it's 20mg, what brought this on? "Nothing, Nothing, I just want to know, are you sure it's 20mg?" and on and on. I know my husband I know that on a regular day to day basis he doesn't give a shit to pay attention to or to know the particulars so WHY THE SUDDEN INTESREST? So I ask him, what's going on, why all of the sudden, what are you thinking about? "Nothing, nothing, I just want to know."
Even though he does know it's 20mg, he wants the paper that says it.

Finally I'm fucking aggravated because now I'm digging through transplant material to find the exact information and can't seem to find it even though I've seen it and heard it a million times.

I get pissed because I know he is full of shit, I know that he has something on his mind, that he's planning something and I'm pretty sure it doesn't involve me, but he won't give it up.
I get pissed, tell him I'm done looking and go upstairs to be pissed by myself because I know he is hiding something.

Then he comes upstairs and tells me that his buddy wants to take him to Florida or some shit, I don't know and it doesn't even matter, but WHY THE FUCK WOULDN"T YOU JUST SAY THAT TO BEGIN WITH!

He knows that it would be fine with me, why the fucking game? Why let my mind spin? Why "hide" something, deny you're hiding something and piss me off? And I'm the bitch here.

So for right now I'm pissed that he has that "character flaw" shall we call it, he's sneaky. I hate a sneak. I hate the feeling that someone is trying to pull something over on me. I hate being the dummy, don't fucking tell me there is NOTHING that you are hiding when THERE IS.
Don't make me doubt myself, my instincts! I hate that. With Shawn it's always something little, something totally insignificant but yet he insists on doing it.
I don't get it.

My ex-husband would look me in the face and lie, and make me feel like an asshole for doubting him, I was the crazy one. I was right, I knew it, he was lying to my face I knew it but he would say I was wrong. I hated it. Of course he was lying about being out banging some whore, or snorting up his paycheck, big stuff but to me it doesn't matter, big, little it's still telling me that I am wrong, making me not believe myself.

So why does Shawn do that? Why does he lie about stupid things, things that wouldn't matter anyway. Why lie about it? Why lie? Why make me have all of those horrible feelings, why let all of that come back and smack me in the face,"Tina you fool."

I don't get it. I feel horrible right now. I hate not being able to trust myself. Why plant that seed of doubt in my head. Did I do something wrong? Am I being punished?

I don't get it.

For me?

2009-01-26T17:28:00.006-05:00

I am so enjoying getting to be me. I have never been able to do things that just make me happy. I mean doing things just to make myself happy, just me. Very novel idea huh?

I have always done things that bring me joy but it is usually through doing something for someone else. Which I know is a good thing but I'm learning that it is o.k. to do something for me too.

So what's my big thrill? I walk the beach, I walk the beach and pick up seaglass, bits of pottery, interesting stones, and old seashells.

Whenever I feel restless, my mind is starting to get the better of me, I pull on my warm hat, scarf, and coat, grab my cotton sack and away I go. I usually have the whole beach to myself because it's cold out, so it's very serene. Just me the waves, the seagulls, the crunch of sand and stone under my feet and occasionally the jingle of dog tags from up on the sidewalk.

I can stay down there for hours and most times the only reason I come in is because my finger tips are numb.

I am so Blessed to live here

Procrastination and anxiety

2009-01-25T10:11:00.002-05:00

So of course here I am Sunday morning, when I should be busy posting on my other blog I am here busying myself, checking up on all my friends blogs. Ridiculous.
I woke up in the middle of the night, stomach clenched up, sweaty and feeling as though a hot poker was lodged in my upper lip. Yes, I feel a coldsore coming on...gotta love stress that shows up on your face, disgusting. Chomped down some meds, rubbed on my blister crap, gulped water, crawled back into bed popped a "just relax" under my tongue and drifted off.

Dreamed crazy stuff, I was down in Florida, I couldn't find Shawn. Nobody else was worried, everyone kept telling me to "take it easy". But how could I take it easy, where was Shawn and I was trapped, I had no car, I was far away nobody would help me. Where was Shawn?
I kept threatening that I was going to just start walking but I couldn't really just start walking because everyone knows I can't see at night, I'd get lost, plus I was horrified I would sit down on an alligator thinking it was a log. So nobody thought I'd really start walking, where was Shawn?
Everyone was ignoring the fact that Shawn was missing.....Uh huh I thought...they know where he is, that's why they are not worried. Where is he?

So I woke up this morning and my first thought"Where is Shawn?!" and there he was sleeping peacefully, breathing in and out nice and easy, face pink and chubby, smooth sweet skin, sweet face, messy bedhead nestled into his pillow, beside me.
I leaned over and breathed him in....thank God for the soul who gave his lungs to my Shawn.

Now Shawn and Sara are out walking the mall together. They are so lucky to have each other. She's an incredible kid, a pain in the ass and moody this morning but so full of passion I can't help but smile, she rolls her eyes, reminds me of someone.

Better get to the task at hand. Procrastinate no more woman!

Simply Seaglass

2009-01-24T22:06:00.003-05:00

Tonight I designed my "Simply Seaglass" blog. It's in it's infancy, a prototype really so please be patient with me. Here is the link

http://simplyseaglass.blogspot.com/

I am totally chickenshit but I am determined to overcome this. Wahh wahhh!
I have spent an entire lifetime being afraid to do things, afraid to put myself out there because I'm afraid of not being good enough. I'm petrified of being looked down on, ridiculed, embarassed.
Who the hell knows where this shit comes from and frankly I'm amazed I'm even posting about this but I don't care. I am who I am.
I can do anything, amazing, miraculous, wonderful things for others but not for myself.
I became an expert on all things natural for my daughter, I became a nurse for my husband, and here I am. What am I for myself ?
I want to create, I want to take yoga, I want to make soap, I want to go skiing and camping and hiking and bike riding,...my ridiculous fears stop me, I'll look too fat, I don't have the right clothes, I won't follow through, I might fall, I might be no good and on and on and on.

So tonight I am sitting typing and making a promise to myself, just to me. I promise to stop living in fear.

I want to be brave, I want to live fully, I want to be fearless!

2009-01-23T18:49:00.003-05:00

Jake says: "I can explain"

Shawn slaving over a hot stove!

2009-01-19T08:07:00.002-05:00

So last night it snowed but it is gorgeous....

Cold Beach

2009-01-17T08:37:00.006-05:00

This morning I got up and looked out the window and my beach looked particularly sparkly, so I figured there must be glass everywhere. I got dressed and hustled across the street. Yeah, it wasn't sparkly seaglass everywhere it was ice! My beach was frozen!

I had to run back across and grab my camera, isn't it gorgeous?

.......him too.

I am so Blessed

Sea glass jewelery

2009-01-15T06:29:00.002-05:00

First the photos of my seaglass pendants, are the rough ones.
They are not shown on their finished necklaces. I use copper, gold, stainless steel and sterling silver wire, some cording (silk, leather, hemp) depending on the piece. The wire in the picture was just to hold things in place for photos. (I didn't want anyone to think I was using scraps)

So to answer some questions...
1) Yes, these will be for sale
2) I am in the process of setting up a separate site for my seaglass.
3) I only use natural "real" seaglass, not the faux seaglass you can purchase in craft stores
4) Each piece will come with a card detailing where the seaglass was found, a bit about seaglass, and a brief bio
5)Each piece is created freehand, each piece will be unique.

Soooo..... this is just a bit of FYI......rough draft FYI

Honestly, I love the ocean. I love combing the beach for hours, the seaglass just pops up, catches my eye. Turning my little treasures into jewelery just seemed natural, I love to look at it and I hate the idea of it just being hidden away in a mason jar. My husband thinks I'm a nut but that is certainly nothing new.

I came in last night because it was too dark for me to see the beach I was walking on, not because I had lost the feeling in my toes, nose, and multiple fingertips.

I hadn't even noticed I was cold until I got back in the house, mmm yeah it took me a couple of hours, three mugs of tea and a big bowl of hot soup before I fully thawed out.
It's totally hypnotic, I bundle up,and I have this great cotton sack with a drawstring that I put my goodies in. I can't help but feeling like I have a sack of gold or something when I am hustling back across the street. I have a feeling my husband is going to "forbid" that tonight. Last night it was 19 Brrrrr!

Well anyhoo......it's early and I decided my strategy today will be to head across now while the tide is out instead of waiting for the evening low tide. Wish me luck!

Sea Glass

2009-01-14T16:08:00.002-05:00

I love this blue one and I'm going to hate parting with it

Well I love this green too.

So anyhoo there is nothing fancy going on. I just love collecting and then crafting them into necklaces. I gave my very first ( a white frosty piece) one to a very special friend, she has a beautiful long neck and it sits just below her sternal notch, it looks sexy and regal.

I also joined a seaglass site, I am totally enjoying the process. Ooops the tide is just low enough for me to scour the beach before it gets too dark. Time to go freeze my fingers off! I do it happily!

Yesterday Shawn walked with me on the beach

2009-01-09T15:31:00.005-05:00

O.K. folks I know it doesn't sound like much but.....

We used to live in Winthrop, on a beach. (Yes I have a thing about the ocean)

In Winthrop they have a huge bon-fire on the 3rd of July, on the beach.

There is something totally magical about it, the fire is enormous, I'm talking huge. The center of the bonfire is an upright telephone pole and everything is carefully constructed around it. It's fricken huge! So anyhoo you have this huge fire poppin and crackling, the sky is black, you can hear the ocean roaring, everyone is in a great mood, the night is totally ALIVE. Walking in the sand, well it's amazing.

It is something that I really look forward to. This past July, although we were not living in Winthrop, we headed out to the bonfire and I was jacked. We have friends there.

Well what ended up happening is...Shawn couldn't walk onto the beach. He had his oxygen of course, which was no biggie I can carry that, but he couldn't physically walk in the sand.

It was awful, we kind of stood there on the sidewalk and watched. It wasn't awful because boo hoo we couldn't be down on the beach it was just the reality of how sick and weak he had become was in our faces so to speak.

Well the night left a big impression on me and I blogged about it. On my old blog I think.
(It was attatched to a CF web-site "CF.com" and they erased it, Fuckers)

So I blogged and I was so upset by the whole thing, I just felt horrible, for me, for Shawn, for my dgtr I just felt disturbed and beat down. You get the picture.

So after I posted, my CF friends left comments. They understood me, they understood my husband, they understood my heartache. Manyy of them told me that I should be hopeful that someday Shawn would walk with me on the beach again.

He has. Here is to keeping hope alive. Here is to the wonderful friends I have made. Thank you.

Some pictures

2009-01-09T15:17:00.003-05:00

This is sunrise from our bedroom

This is my beautiful dgtr and pooch

This is me

This is Shawn during his most recent hospital stay. This is your brain on solumedrol

2009-01-09T14:52:00.002-05:00

Well I can see i need some assist but I was dying to at least post a couple of pics. The view is from my living room, that's our deck. I'll get some better ones up but you get the gist. The pooch is my Jake

I love that man

2009-01-03T20:10:00.003-05:00

Well I'm actually posting this while sitting in Shawn's hospital room, he is the most handsome patient in the joint if I do say so myself.

He's looking a bit puffy, eating like a pig and in very good spirits at the moment.

It's funny when we were gearing up for transplant they kept telling us that transplant was trading one "disease" for another and I didn't really get it. Now I think I do.

For the last month I have been so high, thinking that my Shawn was the exception to the rule, probably bordering on arrogance but now I feel like I've had a good spanking.
I know that this is not horrible and I know that this is "common" but it's still a bubble burster. (burster is not a real word)

So now I've done a bit of crying and whining.

I'm grateful. I'm grateful for so many things in my life. My beautiful new home, my wonderful family. My friends. People I see everyday who smile back at me and some that don't. I'm grateful, my husband, who was recently dying is now living.

I'm grateful for the gorgeous seaglass that washes up onto my beach with every tide.
I'm grateful I live on a beach.

I am extremely grateful for my friends on CF2Chat. Without their support I would most surely be in a very different state of mind.

I am grateful to God.

B1

2009-01-02T16:36:00.003-05:00

(I didn't realize that my last post, posted so this is sort of repeat info except that it is B1 and not A1 sorry for the repeat)
Well little setback here.
We got a call on New Years Eve from the good old docs at B&W. Shawn had a biopsy and it showed rejection. It is a low level of rejection B1, but rejection none the less.
So, Shawn was just admitted to B&W to be treated for it, hopefully he will be out on Sunday. Hopefully the high doses of super steroids will beat down his immune system so that it stops trying to destroy his new lungs. Yup a lot of hoping going on here.

Rejection rears it's head

2008-12-31T20:44:00.004-05:00

I first posted this on Shawn's caringbridge site, so it's written for a general audience, layman.
I know many of you who understand CF and transplant will think it is simplistic, or maybe I am being unrealistic but hey it's the best I could manage. I didn't want to re-hash so I cheated and copied it from there.

Original Post:

Well tonight we got some disappointing news. Shawn had a biopsy yesterday, a tissue sample from Shawn's lungs was taken to evaluate the health of his new lungs.
The doctor called tonight, there was a low level of rejection detected.

Rejection is the word that evokes a plethora of emotions, fear being my personal one, my heavy hitter.

Shawn will be admitted on Friday and put on very high doses of steroids to knock down his immune system. His is working too well, it recognizes Shawns new lungs as a foreign object, despite his anti-rejection meds.
This will hopefully only be a three day stay, he will be discharged on a high dose prednisone taper.

The Doctor assured the two of us that this was very low-level rejection, very manageable and very common. Par for the course, so to speak.

We got the news while driving to a friends house, a friend who coincidentally is also a mother to a son, Dominic. Dominic has had three liver transplants. Needless to say she is an expert. L listened to me blubber and bawl, as I got my news across to her.
L was very reassuring, she talked me down. Early detection of very low level rejection is not total freakout stuff. It happens, it not unusual and due to the relaxed pace of admission, definitely acceptable, concern worthy, but o.k.

Roll with it.

It is so easy for me to have Faith in God when things are moving happily in a positive direction. When things are scary, I have to fall back and surrender my fear and worry to My Heavenly Father.

The Faith of a mustard seed. I have that, I have much more than that.

Tonight I am at peace.

Happy New Year to all of you !Happy New Year and God Bless You !

I am wishing you all peace for this wonderful season of new beginnings.

We have been so Blessed in 2008, I can't wait to see what excitement lies in store for us in
2009 !!!!

Walking with Shawn

2008-12-29T14:14:00.003-05:00

It seems strange but it's real, we have been going out for real walks everyday. He's obviously still improving but it makes me feel like I'm in great shape, most of my walking partners kill me. I am 5 ft I have pretty short legs, but as a nurse I really learned to hustle.

It's great anyway, exploring the area, up and down the twisting hills through our new neighborhood is a lot of fun, keeps me entertained. There are some beautiful homes, great history.

Anyhoo...I'm still working with my sea glass, I have completed several pieces and I'm pretty proud of them. I'd wear them. I love the glass. The depth and history it has, where has it been?

I'm going to come up with a list...not sure what kind of list but goals of some sort. I need some purpose in my life. I need some structure.
I guess my options are unlimited so who knows what I'll come up with but I know there have been a billion times that I have said, "I have always wanted to do that...or go there or whatever."

My life keeps interfering with my living.

Not this time

Living 2009

Merry Christmas Eve !!!!!

2008-12-24T16:24:00.002-05:00

I have to stop farting around and finish up about two hundred projects that are Christmas gifts. Since our finances are, shall we say sparce, we have what we need.
I decided to make gifts,
I decided to teach myself how to make jewelery with the sea glass that I've collected since we moved here. I love it. Sea glass is so magical.

So far I've made around a dozen little angels. I'm not sure what I want to call them....I feel like they represent my husbands transplant, the sea glass crafted into something giving it a new happy life. Our donor, his lungs giving my husband a beautiful new life. I don't know.

Anyhoo

But now I'm moving on to the serious and excitingly creative jewelery. My head is exploding with ideas. I've been drawing out designs for months. Tonight Adderral and caffeine will keep me focused and in the zone. Tina's workshop

Well that's the plan...

Shawn is sort of trying to stay out of my whirlwind. I love him.

Sara has been the big wrapper, she's a great wrapper.
I love her.

Merry Christmas guys!!! Enjoy each other,

This one is no for the faint of heart

2008-12-22T19:27:00.002-05:00

My Hero My Babe HOME!!!!!!!! Doesn't he look incredible?

2008-12-22T19:26:00.001-05:00

This is Shawn showing off his incision

Tina's river

Tired

Happy Independence Day !

Drifting

Rejection

Agoramania

Up and down

What a difference a day makes

I got nothing...

One official year, What I remember....

Get Moving!!

Busy busy busy makes for crazy crazy crazy

"Holding On"

Boys of Summer

What the ??????????

feeling good

Slooooow Dooooown

A me post

Much better

He's changed ..........* edited a couple of hours later

Getting it together....trying to

I've accomplished something

I want a new drug, I got one.

Thanks Ladies!

A Debbie Downer but I don't give a shit I'm grateful as hell.

Not Motivated *edited a couple hours later @ 3.49*

Grateful - NY meet-up

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

Trip to Virginia and the new Caddie

Still Good....whoa

Great Weekend

Update

Good News and video clip

He's in the clink

he

F'ing Beach nut-bag!

Supplies have arrived!!!

Shawn and Jake

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

Only a Number

Shawn and I going for a ride

Spring has Sprung

A Good Day and a bad day/night..Ha!

Good News

Will the drama ever end?

Friends

Not #'s we were hoping for

New Tires

He can breathe again....whew

Kicking himself...so I don't have to.

Shocked

Ugly weather out there

He is Amazing

Step 1 sorting

Focus Focus Focus

All is well

Changes

Ahhhh soaking up every bit

Along for the ride

Better

Out of sorts

A Good Day

Shawn's Shaggy Airway

Waiting

Overwhelmed

Seaglass everywhere!

An Amazing Night!

Shawn's Big Night

No Rejection

He's out of surgery

Waiting

Oh Damn these Holidays

Bronch and Biopsy Today

He is Super Bad

He's got Meds !

Before and After Transplant Photo's

Check out the Flyers for Shawns Benefit

Health Insurance Nightmares

The New Old Shawn

Shawn's being a DICK

Not Motivated edited a couple hours later @ 3.49