Shawn's being a DICK

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?

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

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

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!

Jake says: "I can explain"


Shawn slaving over a hot stove!

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

Cold Beach

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

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

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

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

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

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

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

(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.