Tuesday, October 12, 2010


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.


Saturday, July 3, 2010

Happy Independence Day !

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.

Wednesday, May 5, 2010


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

Tuesday, March 30, 2010


Need I say more?

Monday, March 1, 2010


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.


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!

Tuesday, February 23, 2010

Up and down

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!

Thursday, January 21, 2010

What a difference a day makes

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 !!

Wednesday, January 20, 2010

I got nothing...

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