I'm remarried. No longer a widow. I honestly don't know what the hell I am doing.
I forgot about this blog....for years I wrote in paper journals....last summer I stopped. I'm not sure why...
Where do I jump in, do I try to pick up where I left off? I can't. Too much time, too many hard memories, too much pain. Reminding me of what I had, what I lost, what i tried to find again.....but didn't.
Does that sound harsh? It's not meant to. It is reality.
I'm married. I married a man that I truly love. I believe he loves me. I have to believe it because he doesn't show it, at least not in the ways I would recognize.
Shawn's sister introduced us.
(Clearly I have not yet mastered putting F'ing photos on my blog)
Anyhoo we made the trip to Buffalo to see our friends from Florida and to pick up the Trans Am.
We had a really good time. I had two "episodes" one was pretty mild and fleeting and one was hard fucking core.
The ride to Buffalo is 10 fricken hours. Which isn't superlong and frankly is really a nice ride in the proper vehicle but 10 hrs crammed into the cab of the Dodge is a bit much. Shawn drove of course because he had the 4-wheelers on a car trailer and he doesn't trust me to handle it, HA! Really I don't care I'm very content to be just a passenger these days. Sara Lou is creeping up on 5' 6" and I'm 5 ft. So guess who gets to sit in the middle? Yup, me. Shawn is very good about stopping whenever I want so with the breaks it wasn't so bad.
We stayed in our favorite cheesy No-tell Motel, hee hee. The Blue Bird Motel. It's like $40 a night for a double, very clean, quiet and convenient to everything. It's just outdated. Like by 40 yrs! Gorgeous avacado green bathroom. I like it.
Our friends were up in Buffalo for a family wedding. The whole family is wonderful. One of the very few friends we have that we are actually pretty close with ALL of them. Parents, Grandparents, siblings, nieces, nephews, cousins the whole gaggle. They are just really nice unpretentious people.
Mac's wife Kim and I went to see the Body Works exhibit, unbelievable!!!! If you haven't been and you are not squeemish it's a must. I wish it had been around when I was in nursing school. Man it was incredible and I think gives you an even greater appreciation for the intricacy of the human body and the miracle of life itself.
We all went to Niagra Falls, American side. We did the whole shabang and had a great day.
I don't even know where to begin. Two years to the day after my last post my husband Shawn died. Died. Seems ridiculousous to say even still.
I used to love writing in this blog. Then life became more and more complicated and it seemed to me that when I wrote it down, it became real. I didn't want anyone, even people who would never know me, to feel badly. I started keeping paper journals. I hid them. This is my life. All of it.
So now I will try to play catch up. Two years leading up to his death, the end, the fall-out, and pulling myself from the ashes.
Life is still beautiful, I am grateful for all of it.
Let me collect my thoughts.
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.
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.
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
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!
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!
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.
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.
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
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.
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.
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.
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!!!!!
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.
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
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!!!!!!!!!!!!!!!!!!!
