“The first rule of hurricane coverage is that every broadcast must begin with palm trees bending in the wind.” – Carl Hiaasen

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“Come to North Carolina,” they said. “You’ll love it here,” they said. WTF?????

As I said earlier today, “with a hurricane you get a few days warning… with an earthquake, it just happens”. 

I’m not a doomsday prepper, I’m not really even a prepper, but today I did buy beer, wine, pop tarts and lettuce. I think I’m well prepared. I have water and lanterns and some food. As long as the dogs and I are fine nothing else matters. That’s what insurance is for. 

Seriously though, there is gas in the cars (and the boats… just incase), everything is as best protected from trees as possible. I know how to work a generator and cook on propane. I have dog food. I’ll fill the tubs with water to flush the toilet and I have a ton of unread books. 

Thank you fo all the messages and concern! Love you all!

– xoxo Victoria

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“I ain’t lonely, but I spend a lot of time alone More than I’d like to, but I’m okay with stayin’ home My how the last few months have changed … I breathe in, I breathe out Got friends to call who let me talk about What ain’t workin’, what’s still hurtin’ All the things I feel like cussin’ out Now and then I let it go, I ride the waves I can’t control I’m learnin’ how to build a better boat” – Liz Rose and Travis Meadows

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This is a blog that I have wanted to write for a while, but I knew it would be hard to write and I knew it would be a hard to follow, it’s a jumbling mess – just like inside my head right now. Here goes … 

Lately my mind has been a jumble of so many things. I’m angry and frustrated and sad and confused. I am a pretty calm and happy person, I don’t like raised voices, I meditate, defuse lavender, sit in a sauna… But I have a level of anxiety I have never experienced before. I can’t quite tie it to one particular thing. It’s not school, work, the dogs, house stuff … it’s just a general feeling of being incredibly overwhelmed. I feel like no matter what decision I make I am letting someone down – who? No idea. Myself? No idea.

It started about 8 months ago, at that point I could manage it by having only two commitments in a day (grocery store & work, dinner at my parents & working out). If I added something else – like I needed to take my car in or I had to pick something up somewhere, or I took on another freelance job – I lost it. Like broke down, hysterically crying, hyperventilating, lost it. I settled into that but recently it got bad again. It is now to the point where I am not sleeping again, I have acid reflux (which I’ve never had before) and any little thing can set me off. I’ll just be driving and start crying. My stomach is constantly burning and I’m always exhausted. 

Before anyone responds here, yes I see a counselor, originally it was every few weeks, then once an month and now its back to every week or so. 

I am loving school. I am so motivated to get done and start helping people. I can’t wait to actually be making a difference in people’s lives. I love the competition of class (I know it’s not a competition! hahahaha, but it is!) and realizing that I KNOW this. I CAN do this and I can be amazing at it. I love discovering that for the two years I was a caregiver, I was doing it right. I also love knowing that although it was heartbreaking and pushed me to my limits on a daily basis it prepared me for my life now. I feel such a sense of accomplishment. (so it’s not that!)

I love my house. I am doing a lot around the house to make it a home; carport, extending my deck, shoveling 10 tons of rock, mowing 2 acres hahahahaha But I love it and feel settled and feel like I have a real home for the first time in years. (This maybe be part of the overwhelming part – I have to make all these decisions alone… the color of the roof of the carport? I don’t know let me call my dad. 5 tons of gravel or 4? I don’t know let me call my dad. Riding mower? I don’t know let me call my dad. Quotes on extending my deck? Seems high, let me call my dad. My poor dad!)

Two dogs … should have done it sooner. They are happy and I love them. 

Work – happy to be working again. 

This is where it really gets jumbley… 

The triggers are emotional and I need to get over them. I need to figure out how to not take other people’s actions personally. But I want to shake them!!  How can you take your loved ones, your friends, your family for granted? How can you treat these people like an after thought?

I will help anyone, seriously anyone. I will drop what I’m doing to help someone. I also never ask for help, but when I do, I actually need it, but it is always (other than my parents) “I can’t commit to that” or “can you do it another day” or just simply not answering the phone. I know how to “fix” this, I need to stop saying yes to everyone. I need to establish boundaries and take care of me. I need to stop doing things for people that take me for granted. 

I think I need to accept the fact that not everyone has the same heart. People always think of themselves first. I don’t, I really don’t – I think it’s a “hazard” of being a caregiver on the level I was for so long.

I can’t explain how bad this affects my life. I can’t wrap my head around the way people treat others. It’s not my life, not my relationship, not my home and none of my business. BUT, it just seriously hurts my heart that people are so selfish. I don’t know why I can’t let it go. I am working on it!

See it doesn’t take any sense, it’s a jumble. IT MAKES NO SENSE. The only way I can keep the anxiety to a minimum is to keep my daily tasks limited so that I can work around all the mess in my head. If I pile too many “activities” into my day there is no room for all the confusion and feelings in my head to process. I can process everything as long I have time to sit and do it. I am slower at everything now – taking my time and enjoying life, even shoveling rock.  The thing is, this is affecting my live, in a negative way. I am trying to work on it, trying to remember I can only worry about my home and what goes on in there. I can’t control others, their feelings or they actions. I can only worry about how I live my life and if the way someone else lives theirs affects me on this level I need to reconsider having them in my life on a close, personal level until I can get passed this. 

It’s time to take care of me. to make myself my priority.

As I was writing this blog this song kept, at least 5 times, opening on my computer and playing…

It is all so SIMPLE.

– xoxo Victoria

 

“But I love my life Man it’s something to see … It’s the way it’s alright when everything goes wrong It’s the sound of a slow simple song” – Christopher Alvin Stapleton / Darrell Hayes

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WOW! It’s been a while since I’ve blogged. I love my life right now. I have a home, I’m in school, I started a new job today and I have the best two puppies ever! A lot has been going on and I have so much to share. The past few months have been full of personal growth and so much change for me. I have learned so much and am still trying to work through some things. Over the next few days I will be sharing some of my triumphs and some of my struggles. I miss sharing and staying in touch with you! All you support and love has meant me to me these last few years than you could ever imagine!

– xoxo Victoria

“Not My Job” – Me This Last Year… Before I realized it was my job!

Many people don’t know this but there were things that Duane thought were HIS job, he was adamant that I didn’t do them. They weren’t the “normal” things like working on engines or getting covered in grease. Changing oil or pressure washing the house. Yard work or gutting fish. Those were all equal opportunity jobs. These were the day – to- day simple household things that I just didn’t do. Even when he got sick I didn’t do them, he somehow made sure of that. 

I have never shoveled snow. He told me it was his job – to the extreme that Gracie wouldn’t go out to pee for 2 days sometimes until Duane came home to shovel her a path. (Her choice, not mine, she held it). We never lived in the snow after he got sick. This year it snowed … I just stayed home because – not my job.

I didn’t take the trash to the curb. Even in San Diego the trash guy came and got the cans. I still forget almost every week. I do remember, when I’m in bed, at 3am, and have to run out to do it.

AND the worst … I didn’t take my hair out of the drain – WORST. THING. EVER. I  would rather clean poop or vomit. In Reno it never crossed my mind, we had good drains in Arizona and in San Diego I just poured a lot of Draino down there. Well, when you’re living with a septic tank you have to do it. Last week I concurred that. I have LONG hair. It was the absolute most disgusting thing ever. I put on gloves and still gagged at least 5 times. How does so much hair get stuck in there? Why is it still soapy? Why is it so gross? What is all the other stuff in there? How do leaves get in there? Why doesn’t it just go down? I bought this flower hair catcher thing and I’m hoping that helps – until I have to pull it out and change it (because believe me $3 is worth throwing it away and getting a new one.)

I sometimes forget the things he did, before he got sick. He cooked dinner every night he was home, I sat on the floor leaning against the wall, drinking wine and watching (not learning). He took the trash out – if he was going to be at work when they came he took it out before he left, did the major house repairs with my help – which usually consisted of providing popsicles and staying out of the way, fixed the broken toys, changed the oil in the cars and boats, helped me with my business, cuddled with the dog, and cleaned the shower drain. 

This last year has been eye opening. The major things I was aware of – I had to be. I know how to maintain the big things – engines, house renovations, boats, cars and life. I know how to prepare one’s paperwork when they’re dying, I know how to care for someone when they’re dying, I know how to grieve. I know how to figure things out. It’s the small things that are still blowing my mind. As I stand over my kitchen sink eating random parts of meals because it’s too much work to cook for one person I realize it’s the little things that are so hard to wrap my head around.

He was a guys guy. But he always opened the car door, the house door and took care of me. He made sure I was safe and comfortable. He made sure that the little things were done – the things I knew nothing about but took for granted. 

– xoxo Victoria 

P.S. One thing I will probably never figure out is direction. I google maps everything. My sense of direction is so off. Duane would get so mad…hahahahahaha

“But it feels like I’ve opened my eyes again And the colors are golden and bright again There’s a song in my heart, I feel like I belong” – Rachel Platten / Sally Seltmann

So much to say and so much to share… Stay tuned this week for blogs about flying on a plane for the first time in 7 months, attending the wonderful wedding of a beautiful friend, hanging out with her cooler than cool baby, moving to a new home and how well school is going. The last 7 days have been amazing and how I, I don’t usually toot my own horn, am really proud of myself.

– xoxo Victoria

“You always had to be right … when the only voice she hears is telling her she can’t”, – David Allen Berg / Sarah Buxton / Nancy Bryant

A year ago today we officially said goodbye to Duane. We took him out on his yacht and, as HE wanted, I “dumped in the ocean”. In that moment, I never would have imagined I would be where I am now.

A year in and I am happy, I am making it work. Next week I am moving – again. I started school to become a CNA, and am thinking about getting Buddy a friend. I know I need to live my life, the way I want to, prepare for my future and be happy. “Live for today, but prepare for tomorrow … just in case” – Duane. 

We had our differences. I was very aware that there were things he thought I was not capable of, he told me. He told me what I wouldn’t be good at and what I wasn’t good at, he didn’t mince words – but that’s why we loved him, right? He taught me so much but he also made it very clear that I could never do what he could. I could never maintain boats, a house and run a buiness. I could never do it without him. But guess what, I am. 

A few years ago I was having a rough day, I had been in the engine room all day, being told I couldn’t do something, feeling defeated. I had spent hours replacing a pump, cleaning up a diesel spill, putting an engine back together and it wasn’t good enough or fast enough. I wrote about it… A very wise man, I’ll him Greg C. called me and told me that the week before he had been working on the same project and that Duane had been teasing him, telling him that I had taken it apart and that he should be able to put put it back together. Apparently when other people were working on things Duane’s go to was “Vic can do it”. I wish he would have said those things to me. He was very, very hard on me. Always expecting more and better. I would be beat down and crying. BUT it made me who I am. I am self sufficient. I can talk care of myself. (I can even help you if you need me to! hahahahaha). 

At this point I like to think that maybe he was so hard on me because he wanted me to succeed. Maybe he knew I needed the doubt of someone to force me do it. Maybe he was hard on me because he knew I would be alone and would need to be able to take care of myself. Who knows. You can no longer tell me I cant do something, you can no longer doubt me. I will prove you wrong.

– xoxo Victoria

“I believe in what I am, I believe in what I was I believe in losing you, I’ve never been given so much I believe it’s been a year, the worst one I’ve ever lived I believe I’m better now than I have ever been” – Kimberly Perry / Neil Perry / Reid Perry

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This is the blog I have been dreading writing for months… years actually.

Today marks 1 year without my best friend. 365 days without the laughter, smiles and sarcasm. 8,760 hours of me having to figure it out myself. 525,600 minutes without the support, advice and guidance from the person who always wanted me to succeed and be the best me possible. 31,536,000 seconds without Duane. 

Today my family and I went out on MY boat. My pink boat. The boat I bought myself. Scraped and sanded myself. Painted myself. Worked on the trailer myself. Worked on the engine myself. All because Duane taught me how. I was able to make this happen because of the lessons and instruction he provided me for years. I am comfortable backing down a trailer, unhooking a boat, driving a boat and working on a boat because Duane taught me how. On the lake today, as we drank bloody mary’s and fished I realized what a gift Duane had given me. He gave me the gift of knowledge. The gift of confidence.

Duane once told me a story about something his dad said to him – I’m paraphrasing here …. Duane needed his car fixed, didn’t know how to do it, he was going to take it somewhere and pay someone else to fix it. His dad asked him why he would do that. And Duane responded with it’s his job, that’s what he does. And his dad said is that guy smarter than you? If he can do it so can you. 

Every time I said “I can’t do it” he got so mad at me. “Yes you can, figure it out!” I could be there crying my eyes out, covered in oil and grease and his response was always the same. As frustrated and mad as I was in those moments, that one lesson has helped me survive this year.

I am thankful today. Thankful for all the “quality” time spent together in the garage, late late at night, in the middle of winter, watching and learning and “helping” rebuild motors. Thankful for all the conversations, life lessons and time spent driving cross country (a large portion of that time spent broken down on the side of the road). Thankful for all the amazing people he brought into my life. Thankful for our time together. Thankful for the love I felt, the patience I learned and the person I have become. 

– xoxo Victoria

 

“When your legs don’t work like they used to before And I can’t sweep you off of your feet Will your mouth still remember the taste of my love? Will your eyes still smile from your cheeks?…And, baby, your smile’s forever in my mind and memory I’m thinking ’bout how people fall in love in mysterious ways” – Amy Wadge, Ed Sheeran

1 year ago today I failed Duane. He had chosen NO medical intervention. He was very clear on what he wanted. One of the non life saving things he was adamant about not having was a catheter. Did not want one, I mean really did not want one, would never have consented to one. So I held a urinal for him, even when he was out of it, I would put it there in hopes my timing was right, it usually was. We had had a few issues in the previous few days, a few accidents and it seemed that any time he passed urine he was in pain; flinching and grimacing. We thought he may have an infection, but at this stage there was nothing we could do about it. Our main hospice nurse suggested we put a catheter in for his comfort. I went back and forth, know that was the last thing he wanted, but I also knew he was in pain. I wanted his journey to be as painless as possible and I also wanted to honor is wishes. But at around 11 am on July 7, 2017 I agreed to have one placed. 

Journal Excert…..

7/7/2017

There is a huge misconception about sitting and watching someone die. They don’t just go to sleep, they lay and suffer and it’s brutal and heartbreaking. 

This is not at all what I thought. It is in a way peaceful but at the same time not. It’s horrific and crushing and I feel helpless. 

Life sucks watching someone die.

– xoxo Victoria

“Hospice is a Philosophy of care that values life from the moment it begins to the moment it ends.” – Dame Cicely Saunders

 

Here is part of my personal journal from 1 year ago today….

July 6, 2017 A.M.

We started crisis care yesterday. That means Duane has a morphine pump, 2 sub Q ports (under the skin versus an IV into a vein) that are constantly giving him meds. We can also supplement with additional morphine as needed. I give him another shot into one of the ports every few hours. We now have 24 hour a day nursing care. 

So far both nurses have been great and super informative. 

Duane has been in sooo much pain, he’s been having accidents in the morning and he’s miserable. After meeting with hospice we decided it was best to start crisis care. So we will have it until his pain is managed.  Our normal hospice nurse will come daily while everything is going on. We seem to have the pain managed. He only had a little pain when the medicine went in the first time, probably because it was cold. For the rest of the time he slept. He fell asleep at 10pm and is still asleep now, it’s 8:45am. He didn’t stir all night. 

He seems comfortable. 

We will see what today brings. 

July 6, 2017 P.M.

Sitting next to Duane, he is asleep, completely out of it. It’s sad because I don’t know if he’s out of it or really asleep. He seems comfortable and not in any pain. That’s all I can hope for.

Our main nurse was going through his file today and he said that a year ago when we started hospice here, they asked him what his goal for this process was and he said.. “for my wife to be ok”.

That melted my heart. I just love him. I am so glad he is not suffering. 

– xoxo Victoria

I love fireworks. So much potential for third degree burns.

4th of July is by far my favorite holiday. Fireworks, Family, Friends and Fun. Bikinis, Boats, Beer and BBQs. No expectations, no pressure. I am so lucky to have experienced some of the most epic 4th of July’s ever! 

This 4th of July I’m sitting on my couch listening to the fireworks and reminiscing about all the wonderful ones I have been apart of. The photos above show the last 3 … ALS 4th of July’s. 

The first one was July 2015. I had officially stopped working and moved onto the boat in San Diego. We were still full of hope and having fun. (Seriously look how tan we were!) We knew what ALS was and we knew we had a timeline but we still didn’t “get it”. We had spent the day fishing and enjoying family and friends and then cruised the bay for one of the most mind blowing firework shows I have ever seen. We drank and laughed and didn’t think about what life had in store for us. Everything stood still that day. I remember thinking, “we are so lucky to have this much love around us”.

The second was July 2016. We were living in Arizona and had driven in to spend the week on the boat with friends; fishing and enjoying the holiday. Life was getting harder and more effort was needed to make things happen. But we were making it happen. We were still living and enjoying life. I remember thinking, “if this is our life for the rest of our lives, this is not a bad life”.

The last two are from July 2017. There was no pretending ALS wasn’t happening. There was no moment when I thought we will get through this. Duane slept most of the day. He was no longer eating and could no longer speak. He could squeeze my hand and “ask” me to lay with him. I put him in the hospital bed that day and he never got up again. The house was full of love and we watched the firework show on tv. I remember thinking, “this suffering has to end, this pain has to stop, it’s not right”.

– xoxo Victoria