Not Motivated *edited a couple hours later @ 3.49*

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 !

Will the drama ever end?

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

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

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.

Focus Focus Focus

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

I know the usual 'find what you love'

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

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

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

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

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

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

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

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

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

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

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

O.K. Blue earrings. Ready set go!

Health Insurance Nightmares

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

CF'ers read at your own risk: I'm blowing off steam

I feel like shit.
I feel like all the wind was taken out of my sails.
The punched in the stomach, heart sinking, air out of your balloon.
That feeling.
I feel it for Shawn.

That feeling you would get if the kids at school left you out, when you thought you were in.

I am quite certain that my reaction is an exaggerated response. I know in my logical mind that my visceral reaction is a poor match for the catalyst.

So, please with that being said... ("With all due respect...I said with all due respect" *a line from 'Taladega Nights' Ha Ha)

Oh Fuck you!

I know that when you have CF you have to protect your health as much as possible. Avoid picking up bugs to the best of your ability. It's your responsibility to yourself and those that love you to do your best.

I'm a nurse I know and understand that. But it sucks. It sucks when your on the icky end of it.

What provoked this rant?
Well there was going to be a meet-up of Cf'ers from the east coast, adult CF'ers. Shawn has been colonized w/ MRSA. A dangerous "superbug" that reeks havoc on Cf'ers. Soooo, it was decided that pt colonized w/ MRSA would not be able to attend the meet-up. I understand the rationale. I understand that it is the smart and respectful thing to do. I understand but it still sucks.


In the non-Cf world
where Shawn is stared at for wearing oxygen, where he can't participate in most things and people don't understand why, where he is different from everyone else, where he questions his own worth, because he can't support his family any longer, because he can't be the adventurous crazy Dad he was, because he isn't the same husband and lover. In the world where he feel "less than", being excluded from that world, the non-CF world, that sucks.

But in the CF world
he's one of many just like him, others who understand why he coughs that way, why he might talk in short bursts, why he's slim, why he has to walk slower than everyone else, why he can't breathe after pigging out, why he has clubbed fingers. In the CF world, I'm sure it is still somewhat disturbing to see a guy his age on O2, especially when other than the cannula he looks so good, but it doesn't freak you guys out. It's all par for the course.

I wanted Shawn to have that. I wanted him to feel normal and accepted.

So being excluded in that world, the CF world, that really sucks.

I feel for him and it breaks my heart.

A Good Day

I am having a hard time with the daily fluctuations in Shawn's health. Everyday there are so many variables that play into how Shawn feels. The temp, humidity, barometric pressure, air quality/pollen/ozone etc, how he slept, what he eats, hydration, scents/perfumes/laundry detergents, animals, stress etc.
I can't see what's coming next. It's too unpredictable.

I feel like I have so many loose ends. I don't have a plan. I need some direction.

It's not just Shawn either, I'm too up and down, I don't know how much is me and how much is real.

I feel like I am drowning.


On a good note...This morning we got up and went for a ride on the bike. Met up with the usual suspects @ the coffee shop. Today I met a woman a few years older than myself who has battled with breast cancer for the last year, she is now "clean", but still on maintenance meds.
We also met a woman who organizes charity/benefit rides and generously offered her help to plan ours.

So Blah to me for being a downer.

I have my husband and my daughter and I need to focus on enjoying us and not taking every frickin thing to heart.

Good, I have talked myself out of a blue mood!!!!

Why do I have to be really pissed?

Sometimes he makes me nuts.
Why do I have to be totally pissed, disgusted, beaten down or utterly exhausted before he will do something?

We had prescriptions to be picked up, we as in Shawn and I both had scripts that needed to be picked up. I have been asking him to pick them up.
Excuses, excuses, procrastinate, whine, ignore, and whine some more.
His main excuse is "It is such a huge effort for me, get my tanks, walk through the store, get out of breath etc, it's so much easier for you"
Tonight once I got good and pissed, logged out of chat, chg'd my clothes, threw on my shoes, grabbed my purse and headed for the door he sprung into action. Suddenly he was going to go all along.
AHHHHHHH!
So we went together.

What the hell is that? For the love of Pete! I do the lion's share of the work around here, there are not many things I ask of him, that is a task that he can complete. He is not going to drop dead from the effort. He HATES to get SOB. He avoids it at all costs. No wonder he is in the shitty shape that he is in. Exercise Ha!

I just hit him below the belt, almost literally.
This is going to be adult in nature so look away if you must.
Shawn and I have always had a very dynamic physical relationship, if you know what I mean, hubba hubba.
Tonight I told him that I was not ready for that to end. I don't want to know that we will never have that again. That the last big bang so to speak has already happened.

I think I saw a light bulb go off in his head or at least saw some sparks and some smoke.

Maybe that will give him some motivation.

All joking aside, it's true. I miss him in that way.
I love him of course regardless, but I'd be lying if I said it didn't matter at all.

Anyhoo, that's my rant for the night.