“Tumble outta bed and I stumble to the kitchen Pour myself a cup of ambition Yawn and stretch and try to come to life Jump in the shower and the blood starts pumpin’ … Workin’ 9 to 5, what a way to make a livin'” – Dolly Parton

 

Well this week was one for the books. I never thought I would see the day when I had to get up at 4:45 am four days in a row for work. So many of you are laughing right now. But seriously – I was not made to pull 4 all-dayers in a row. 

I started work this week at the hospital and I had orientation ALL WEEK and school at night two of those days … and if you read my last post it was also a heartbreaking week on a personal level. 

But seriously, 4 days of actual real work. What was I thinking? It’s done now. Next week I start my 3 days of 12 hour shifts. I used to work conventions and had to be up early for a week straight but that was years ago. And after those long weeks Duane always gave me a “prize”. Once it was a bike he found with no seat, once it was a light up, pink fishing pole he found and the best was a 1970’s gaudy lamp with crystals dangling from it, he found. I still have the bike and the lamp. The only prizes I got this week were bags under my eyes, a dog sitter bill and a sore back. 

But I loved it. Learning and getting ready to start helping people. Hopefully this week is full of love, helping and sleep on my days off! hahahaha

– xoxo Victoria

 

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“You’ve got a friend in me You’ve got troubles, and I’ve got ’em too There isn’t anything I wouldn’t do for you We stick together and can see it through ‘Cause you’ve got a friend in me” – Randy Newman

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(This picture is from my annual Thanksgiving Eve Costume Party 11/2017)

Where to start?… I had a really funny blog I was going to write tonight and maybe I will tomorrow, but it doesn’t feel important now – but maybe it’s more important. 

Last night we lost another amazing person. Last night ALS took another young husband, dad, friend and bright light from us. Last night ALS broke so many hearts. Last night ALS once again made life unfair and dark. Last night ALS won again. 

I met Alison, about two years ago, in an online support group while Duane was alive and we were living in San Diego. I met her husband Cory when I moved to be close to family in Wake Forest, NC where they lived. It was an instant friendship. We met at the most crucial time in all of our lives. A time where we all needed a new level of support and a deeper level of friendship. This last year and half has been filled with heartache, tears, understanding, support and so much love. 

I am so lucky that I am able to call Cory a friend. When I met him he reminded me so much of Duane, even my family noticed the similarities. His sense of humor, sarcasm, love of adventure and heart all reminded me of him daily. I am so fortunate that I was able to spend time with someone that could make fun of me in one moment and in the next one be supporting one of my crazy ideas. He was always there to answer a boat question, a lawn question, offer advice or make fun of me for something dumb I did. He was always supportive and there to listen. 

Last night I laid in bed and talked to Duane. I told him it was his turn. Cory (and Alison) had welcomed me with open arms and hearts, it was his turn to welcome Cory.

My heart is broken for Alison, their boys, their families and friends. ALS is a brutal disease. It sucks the life out of the patient and those around them. It makes everyone a shell of what they used to be. There is no cure and that has to change. Families cannot continue to be devastated by this horrible disease. 

If you have any questions or would like more information about ALS or research please ask me. 

– xoxo Victoria

“Day after day, I must face a world of strangers Where I don’t belong, I’m not that strong … I can take all the madness the world has to give But I won’t last a day without you” – Paul H Williams / Roger S Nichols

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So I don’t think I complain a lot.. maybe I do, but I try not to. I try to make the best of every situation. But tonight I’m sitting on my couch crying. It’s no one’s fault. I think I am stressed about starting work next week (Yes! I got job!) and school and the dogs being alone while I’m at both, a dog sitter I really don’t know (but seems amazing and comes VERY highly recommended) and figuring out how to do my taxes for the first time and a broken car, a falling down carport, a cracking ceiling and well … just life. And it’s been raining and crappy weather for about 3 weeks straight – that really bums me out more than anything else. 

Ever since Duane passed I have this inability to do more than 2 or 3 things in a day. If I try to, I get so overwhelmed I can’t handle it. I have a major break down. It’s getting better and I have learned to work with it, but it sucks. I really have to PLAN – not something I’m used to. I have also become way more sensitive – maybe I’ll do a separate post on that later … 

So tonight I rented “A Star is Born” from Redbox. I was super excited to watch it. But the DVD is BROKEN. This is not the first time this has happened at Redbox. I was fine with it until … I called in and they hung up on me. They said they would not refund my money (seriously it’s $1.75 it’s not about the money – it’s about customer service – but when you ship your jobs overseas….), I need to call back in tomorrow and talk to someone else. I asked why and she got quiet so I asked again and she hung up on me. 

Why cant people just be nice. This was the last time I rent from Redbox. And I know it doesn’t matter. I am just one person. But I remember Duane saying, I’ll never buy anything made in China again, I laughed, but, he didn’t (to the best of his knowledge). 

This is such a stupid thing to be upset about, I know. But sometimes this is my reality. Honestly this is my nonexistent life now! HAHAHAHAHA! I obviously need to get out more. I guess this is just leading into a post about PTSD, Caregiver burnout and life changing events. Maybe this is what needed to happen – a broken DVD – to help me get deeper about caregiving and death and widowhood and the toll that they take on a person. 

– xoxo Victoria

Title quote from this this – I love The Carpenters!!

“Sometimes I forget these ten digits ain’t my lifeline anymore Every now and then, I dial ’em up When life gets tough” – Chase Mcgill / Jessi Alexander

I heard this song on the radio while I was driving the other day and immediately burst out laughing. It’s actually a pretty sad song but when I first heard it I could only think about the poor person who has Duane’s old number! hahahahahahah They must be constantly bombarded with calls.

People would randomly call or text Duane months, even years after they met him just to touch base with him – I know, I was one of these people. hahahaha He was great person, always there to lend a hand if you needed it or up to go out and have fun. He very rarely said no.

After I was done laughing I listened to the song again and stopped laughing. I really miss being able to pick up the phone and ask him a question, get advice or tell him a funny story. I still talk to him, but he doesn’t talk back. I’m lucky though, I had so many years of him explaining how things work and teaching me how to do things, that I can usually talk myself through a project.

I’m not sure if anyone one knows this (why would they) but I have a few saved voicemails on my phone from him – I didn’t plan on saving them, they are just there. You can hear the progression of the ALS in his voice, all the voicemails sound like different people. But I can still hear him say I love you in them!

– xoxo Victoria

“…all we need is hope And for that we have each other …We’ll rise up And we’ll do it a thousands times again” – Cassandra Monique Batie / Jennifer Decilveo

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I devote a good amount of my time speaking with caregivers, most of them are young and many of them are in the ALS community. So many of them have the same questions and frustrations. The questions that no one can or will give them the answers to and the frustrations of a broken medical system.

I can’t do much for them but I can talk to them, I can tell them how Duane and I coped. I can reassure them, tell them they are making the right choices, listening to their hearts and that they are doing an amazing job. I can give them everything I know. I can share my story and what worked for us and more importantly what didn’t work for us and what it didn’t. 

In an effort to reach and support as many people as I can I am going to start sharing experiences here. Giving our reasoning behind what we did. How I saw the situation, how Duane saw the situation and what we did to meet in the middle. Most people don’t realize the decisions and planning that go into daily life when you are caring for someone and trying to give them the best life possible. Even a simply trip to Costco takes planning. 

Hopefully the right people will see these posts and get what they need out of them. If you have topics you would like covered or any specific questions please email me at victoriasunnysolitude@gmail.com I would be happy to discuss them in a post!

– xoxo Victoria

“And that life will once more… Be a celebration… And that you will be touched by an Angel” – Stevie Nicks

Life is good right now. I have pink hair!, and it will be back to blonde for me to start my new job on March 4. I have a side business doing well and a book that’s almost finished. I have a cozy house, two crazy dogs and summer is right around the corner.

I’m sure there will still be hard days, but right now – everything is good. 

– xoxo Victoria

“It’s just that simple, S-I-M-P-L-E Simple as can be It’s just that simple, S-I-M-P-L-E Simple as can be Ain’t no need to complicate it, we both know that’s overrated We’ve been there, it’s safe to say it ain’t our style We’re just simple like a six string The way this world was meant to be Like laughin’ love, make a lot out of a little It’s just that simple, S-I-M-P-L-E” – Mark L Holman, Michael Wilson Hardy, Tyler Reed Hubbard

Decisions, decisions, decisions…

I never made any decisions. We needed a new fence – Duane built it, we needed a new roof – I provided popsicles while Duane reroofed the house, a new couch, new kitchen table, new motorhome – Duane picked them out. I didn’t decide anything. I would come home from a week of work and my bathroom would be remodeled or the kitchen would be remodeled. I didn’t have to think about anything. 

It’s kinda sad but really kinda nice. I didn’t have a lot of choice in the way we lived or what we had, but in all honesty I didn’t really care. We had nice things and were really happy.

Once he got sick a lot of decisions fell on me. Major decisions, life and death decisions. I had all my decision making ability sucked out of me in those few years. 

Well now I have decisions to make again. I usually call my dad (he and Duane are both super, super handy and have the same eye for what looks good and what will look janky). So for example when I needed something to store the station wagon and Mastercraft under I went back and forth between a garage and a carport. I sat at the “store” and seriously called my dad no less then 5 times … “What color should the outside be?”, “What color should the trim be?” “How many walls?” … He was answering the phone and I was just saying “Me Again, I have another question”.  HAHAHA 

Well I am getting a job, a real job, and I have two dogs that cannot be trusted to be free range in the house … what was I to do? My parents are not available to come over to help OR make the decision for me. (Before we go any further YES I am an adult and I am totally capable, or should be, of making these decisions by myself, but I don’t. I second guess everything, because Duane was literally an expert on everything, and so is my dad so why would I make a decision?) I was trying to Message my dad (he’s out of the country and ask him questions about a fence vs a dog run … wood or chain link? … black or silver? … include the shed or not? … get a garage? … maybe a fence and a dog door? … maybe just leave them inside in their crates? cameras? maybe just trust them? NO!!!!!

Well I dug deep and made a decision. HAHAHAHA I emptied my “yard equipment” shed, filled it with dog beds and blankets and hired someone to build me a 10 x 20 foot dog run attached to it. It looks pretty good. I haven’t tested how they like being in it yet. But so far they really like peeing on the outside. 

Hopefully between that space and the amazing dog sitter I found, to let them out, Buddy and Lucy will be happy. 

Decision making is hard. My mind can easily decide what meds you need, what dose you need, what to do if you’re choking, not breathing or overdosing. What alternative treatment may work for you, what sauna, oil or constipation remedy may help, but ask me to decide between a fence and a dog run  – give me a week! I’m working on it. I have a flowered comforter, some amazing antique pieces and a pink polka dotted boat.  So yes, I can make decisions. But I am still in the process of second guessing all of the household, daily happening decisions.  

– xoxo Victoria

P.S. My sister told me the other day that she feel like she’s in the “Three’s Company” tv show when she comes over … I said, “Perfect – That’s the look I’m going for”!

“They call me the fireman, that’s my name. Making my rounds all over town, putting out old flames. Well everybody’d like to have a what I got. I can cool ’em down when they’re smoldering hot. I’m the fireman, that’s my name.” – Mack Vickery / Wayne Kemp

unnamed-1Funny story – years ago Duane and I moved to Discovery Bay, he was remodeling our rental in Reno so I started living in California before him so I could keep working there. It was January when we moved in and we had a wood burning fireplace that I used every night. Everyday he asked me if I had bought a fire extinguisher, 2 actually,  everyday I told him no, but I would go out and get them that day… a week or so went by and I still hadn’t gotten around to it. I figured I was careful so there was no way the fire would shoot out of the fireplace and burn the joint down. (Plus he’s the fire expert he should buy them.)

Well one day I was blow drying my hair and guess what happened – the hairdryer started shooting flames out of it. No joke. Flames shooting out of it. Sparkler things were landing on the bath mat and burning holes in it … it was not a good situation. I went out and bought 4 fire extinguishers that day.  I told him that if he just would have told me that that could happen I would have gone out and got them the first day. 

Fast forward 8 years and I have 5 extinguishers in my house, both bathrooms, kitchen, next to the sauna and next to the fireplace. I never leave the clothes dryer on when I leave and always unplug the toaster, hair straightener and coffee pot when I go out. I warn everyone about Christmas tree lights and space heaters. I am house burning down, fire scared. 

Well a few weeks ago my heater broke. It was 55 degrees in my house when I woke up, and in the 20s and 30s outside… blah blah blah…The warranty people had a new one in 48 hours so it wasn’t so bad, but in the mean time … I was using my gas fireplace until I ran out of propane and then I switched to space heaters. 

There were plugged-in in my bedroom. While I was getting ready for bed or in the shower they worked perfectly. As soon as I got in bed they shut off and blew the breaker. I would get up, flick the breaker back on, switch outlets, move them around the room and no matter what as soon as I laid down in bed .. the breaker blew. 

Duane is still keeping me safe and teaching me lessons. 

– xoxo Victoria

P.S. When they were replacing my heater they found a pretty good leak under my house. My dad fixed it, but there was one day with no heat and no water … it was like m=being back in the motorhome in winter! hahahahaha

“So this is what the truth feels like This is more of what I had in mind” – Justin Tranter / Julia Michaels / Mattias Per Larsson / Robin Lennart Fredriksson / Gwen Stefani

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In late December I self published my personal journals on amazon. This was something I had told myself I would do before the year was up … I barely made it. I wanted to do this, felt like I needed to do this. I needed to try and reach one person, help at least one person who is in the same heart wrenching position I was in. 

These were journal entries I wrote on and off during Duane and my’s battle with ALS. I was so scared to put it all out there. Scared to show everyone who had supported us and loved us through the last few years what it was really like. What I was feeling. What we went through and how bad some days were. 

This collection of journal entries are the opposite of what this blog was. Here I was able to show everyone all the fun we were having. Share the fishing trips, laughs and all the moves we made in such a short time. #thisisals was uplifting and positive and showed people you can do anything. The blog was originally started to keep all our friends and family updated on Duane’s progression and our adventures. 

This is where the favor comes in … If you have read my journals can you please hop over to amazon and give them an honest review please? I am finishing up a real book and would love to be able to use this to help that. I have had so many people (so many strangers too) email, instagram and message me about the journals. The positive messages and the genuine thanks I have received from people I have never met blows my mind. So I guess what I am asking is – if you have messaged me or emailed me a review would you mind also doing it on amazon? It can be anonymous. (It can also be negative! I mean if that’s what you think).

Thank you all for your continued support and love! I wouldn’t have made it though the last few years without you!

– xoxo Victoria

Live life to the fullest and laugh as much as possible. Life is so short and you need to enjoy every minute, tell people you love them and have no regrets. 

“You better get to livin’, givin’ Don’t forget to throw in a little forgivin’ And lovin’ on the way You better get to knowin’, showin’ A little bit more concerned about where you’re goin’ Just a word unto the wise You better get to livin'”, -Dolly Parton / Michael K. Wells

When I look at these pictures of me as little girl you can see my loves are deeply rooted…. driving boats, bikinis, jumping off things and the sun, not much has changed. This little girl knew she could be whatever she wanted. She was taught that you are capable of anything you put your mind to and as long as you’re happy that’s all that matters. 

Fast forward 34 (shhhhh) years and what has she accomplished? An almost year round tan? Yes. Drawers and drawers full of bikinis? Yes. A master captain’s license? Yes. But that is about as far as it goes… 

I had so many goals over the last 13 years that I never completed or gave up on. Goals that I was told I wasn’t dedicated enough to make happen and things I wanted to do but was told I wouldn’t be good at. So I guess in a way this is my New Years’s Resolution Blog Post. 

In 2019 I plan to start checking things off my list. Compete in ways I have never competed, finish races I never got to start and participate in activities I might not be good at but have always wanted to try. In 2019 I hope to live the way I always dreamed of living; laughing, loving and truly enjoying myself and those around me. I know life is about compromise and it can’t always be “your way”, but some of the time it’s ok to ask for what you want and put forth every effort to make sure that your desires and dreams are fulfilled. 

Here’s the start of my list…

  1. participate in a triathlon 
  2. compete in a paddle board race 
  3. finish school
  4. finish my book 
  5. take a boat down the ICW and through the caribbean (that one may have to wait! hahaha)

These are all more than doable. I’ll add to this list as I have time over the next few weeks and add them to my final list as 2018 ends. Obviously I’ll keep everyone updated on my wins and losses (hopefully there won’t be many!) and share my laughs and tears. 

I hope everyone has a wonderful holiday season and appreciates all those around them. 

– xoxo Victoria