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

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

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

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

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?

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